Robijn, Lenzo; Seymour, Jane; Deliens, Luc; Korfage, Ida; Brown, Jayne; Pype, Peter; Van Der Heide, Agnes; Chambaere, Kenneth; Rietjens, Judith
2018-04-01
Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. Qualitative case studies using interviews. Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care.
Harris, Andrew; Walker, Andrew
2018-04-23
The article examines the decision-making process for medical reporting of deaths to a coroner and the statutory basis for coronial decisions whether to investigate. It analyses what is published about the consistency of decision making of coroners and discusses what should be the legal basis for determining whether a particular death is natural or unnatural in English law. There is a review of English case law, including the significance of Touche and Benton and the development of 'unnatural' as a term of art, which informs what the courts have held to be an unnatural death. What case law indicates about multiple causes and the significance of the wording in the Coroners & Justice Act 2009 that triggers an investigation are considered. It highlights the importance of considering the medical cause of death and to what extent information other than the initial death report is required, before making the decision that the coroner's duty to open an investigation is triggered. The article concludes that a two-stage test is required. Firstly, is the cause of death medically unnatural? Secondly, whether the circumstances themselves are unnatural or such as to make a medically natural cause of death unnatural. If the coroner has reason to suspect the medical cause of death is unnatural per se the statutory duty to investigate will be engaged, regardless of the circumstances.
Pennec, Sophie; Monnier, Alain; Pontone, Silvia; Aubry, Régis
2012-12-03
The "Patients' Rights and End of Life Care" Act came into force in France in 2005. It allows withholding/withdrawal of life-support treatment, and intensified use of medications that may hasten death through a double effect, as long as hastening death is not the purpose of the decision. It also specifies the requirements of the decision-making process. This study assesses the situation by examining the frequency of end-of-life decisions by patients' and physicians' characteristics, and describes the decision-making processes. We conducted a nationwide retrospective study of a random sample of adult patients who died in December 2009. Questionnaires were mailed to the physicians who certified/attended these deaths. Cases were weighted to adjust for response rate bias. Bivariate analyses and logistic regressions were performed for each decision. Of all deaths, 16.9% were sudden deaths with no information about end of life, 12.2% followed a decision to do everything possible to prolong life, and 47.7% followed at least one medical decision that may certainly or probably hasten death: withholding (14.6%) or withdrawal (4.2%) of treatments, intensified use of opioids and/or benzodiazepines (28.1%), use of medications to deliberately hasten death (i.e. not legally authorized) (0.8%), at the patient's request (0.2%) or not (0.6%). All other variables held constant, cause of death, patient's age, doctor's age and specialty, and place of death, influenced the frequencies of decisions. When a decision was made, 20% of the persons concerned were considered to be competent. The decision was discussed with the patient if competent in 40% (everything done) to 86% (intensification of alleviation of symptoms) of cases. Legal requirements regarding decision-making for incompetent patients were frequently not complied with. This study shows that end-of-life medical decisions are common in France. Most are in compliance with the 2005 law (similar to some other European countries). Nonetheless, the study revealed cases where not all legal obligations were met or where the decision was totally illegal. There is still a lot to be done through medical education and population awareness-raising to ensure that the decision-making process is compatible with current legislation, the physician's duty of care and the patient's rights.
Mo, Ha Na; Shin, Dong Wook; Woo, Jae Ha; Choi, Jin Young; Kang, Jina; Baik, Young Ji; Huh, Yu Rae; Won, Joo Hee; Park, Myung Hee; Cho, Sang Hee
2012-04-01
We aimed to investigate the current practice of the involvement in decision making from the perspectives of terminal cancer patients, and to explore its possible associations with quality of life and quality of death in Korea. A multi-center, cross-sectional survey was performed on 93 terminal cancer patients. The questionnaire solicited their opinions regarding participation in treatment decision making, as well as quality of life (European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care) and quality of death (Good Death Inventory-Patient Version). A total of 78.5% of the patients had awareness of their terminal status, while 21.5% did not; 42.4% stated that they knew their condition and shared the decision-making responsibility with the medical staff and their family, while 21.7% made decisions on their own, and 35.9% left the decision-making responsibility to others. Patients who were aware of their illness and who actively participated in the decision making did not score higher than others on outcome measures of quality of life and quality of death. Moreover, the former even showed lower scores in some domains, including the 'physical and psychological comfort' (4.99 versus 5.61, p = 0.03), 'environmental comfort' (5.51 versus 6.04, p = 0.08), and 'emotional functioning' (55.70 versus 71.01, p = 0.06). in Korea, patient autonomy is not a universally accepted value from the perspectives of terminal cancer patients, nor is patient involvement in decision making always conducive to high quality of life or quality of death. The level of information and the pace at which it is provided should be tailored to each individual's ability, preference, need, and culture.
Family health care decision making and self-efficacy with patients with ALS at the end of life
NOLAN, MARIE T.; KUB, JOAN; HUGHES, MARK T.; TERRY, PETER B.; ASTROW, ALAN B.; CARBO, CYNTHIA A.; THOMPSON, RICHARD E.; CLAWSON, LORA; TEXEIRA, KENNETH; SULMASY, DANIEL P.
2008-01-01
Objective: Persons with ALS differ from those with other terminal illnesses in that they commonly retain capacity for decision making close to death. The role patients would opt to have their families play in decision making at the end of life may therefore be unique. This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death. Methods: A descriptive correlational design with 16 patient–family member dyads was used. Quantitative findings were enriched with in-depth interviews of a subset of five family members following the patient's death. Results: Eighty-seven percent of patients had issued an advance directive. Patients who would opt to make health care decisions independently (i.e., according to the patient's preferences alone) were most likely to have their families report that decisions were made in the style that the patient preferred. Those who preferred shared decision making with family or decision making that relied upon the family were more likely to have their families report that decisions were made in a style that was more independent than preferred. When interviewed in depth, some family members described shared decision making although they had reported on the survey that the patient made independent decisions. Significance of results: The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families. PMID:18662421
Ahn, Eunmi; Shin, Dong Wook; Choi, Jin Young; Kang, Jina; Kim, Dae Kyun; Kim, Hyesuk; Lee, Eunil; Hwang, Kwan Ok; Oh, Bumjo; Cho, BeLong
2013-12-01
We aimed to assess whether awareness of a terminal illness can affect care decision making processes and the achievement of a good death in advanced cancer patients receiving palliative care services. Awareness of terminal illness at the time of palliative care service admission was assessed by the health care professionals during the routine initial comprehensive assessment process and was recorded in the national terminal cancer patient registry. A follow-up nationwide bereavement survey was conducted, which contained questions regarding decision making processes and the Korean version of the Good Death Inventory. Among the 345 patients included in the final analysis, the majority (68.4%) of the patients were aware of the terminal illness. Awareness of the terminal illness tended to reduce discordances in care decision making (adjusted odds ratio = 0.55; 95% CI: 0.29-1.07), and increased the patients' own decision making when there were discordances between patients and their families (adjusted odds ratio = 3.79; 95% CI: 1.31-10.94). The Good Death Inventory score was significantly higher among patients who were aware of their terminal illnesses compared with those who were not (5.04 vs. 4.80; p = 0.013) and especially in the domains of 'control over the future' (5.18 vs. 4.04; p < 0.001), 'maintaining hope and pleasure' (4.55 vs. 3.92; p = 0.002), and 'unawareness of death' (4.41 vs. 4.26; p = 0.024). Awareness of the terminal illness had beneficial effect on the harmonious decision making, patient autonomy, and patient's quality of death. Disclosure of terminal illness should be encouraged. Copyright © 2013 John Wiley & Sons, Ltd.
Tan, Amy; Manca, Donna
2013-01-22
Substitute decision-makers are integral to the care of dying patients and make many healthcare decisions for patients. Unfortunately, conflict between physicians and surrogate decision-makers is not uncommon in end-of-life care and this could contribute to a "bad death" experience for the patient and family. We aim to describe Canadian family physicians' experiences of conflict with substitute decision-makers of dying patients to identify factors that may facilitate or hinder the end-of-life decision-making process. This insight will help determine how to best manage these complex situations, ultimately improving the overall care of dying patients. Grounded Theory methodology was used with semi-structured interviews of family physicians in Edmonton, Canada, who experienced conflict with substitute decision-makers of dying patients. Purposeful sampling included maximum variation and theoretical sampling strategies. Interviews were audio-taped, and transcribed verbatim. Transcripts, field notes and memos were coded using the constant-comparative method to identify key concepts until saturation was achieved and a theoretical framework emerged. Eleven family physicians with a range of 3 to 40 years in clinical practice participated.The family physicians expressed a desire to achieve a "good death" and described their role in positively influencing the experience of death.Finding Common Ground to Achieve a "Good Death" for the Patient emerged as an important process which includes 1) Building Mutual Trust and Rapport through identifying key players and delivering manageable amounts of information, 2) Understanding One Another through active listening and ultimately, and 3) Making Informed, Shared Decisions. Facilitators and barriers to achieving Common Ground were identified. Barriers were linked to conflict. The inability to resolve an overt conflict may lead to an impasse at any point. A process for Resolving an Impasse is described. A novel framework for developing Common Ground to manage conflicts during end-of-life decision-making discussions may assist in achieving a "good death". These results could aid in educating physicians, learners, and the public on how to achieve productive collaborative relationships during end-of-life decision-making for dying patients, and ultimately improve their deaths.
End-of-life decision making in the ICU.
Siegel, Mark D
2009-03-01
A large proportion of deaths, particularly in the developed world, follows admission to an ICU. Therefore, end-of life decision making is an essential facet of critical care practice. For intensivists, managing death in the critically ill has become a key professional skill. They must be thoroughly familiar with the ethical framework that guides end-of-life decision making. Decisions should generally be made collaboratively by clinicians partnering with patients' families. Treatment choices should be crafted to meet specific, achievable goals. A rational, empathic approach to working with families should encourage appropriate, mutually satisfactory outcomes.
Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death
Barlevy, Dorit; Wasserman, David; Stolerman, Marina; Erskine, Kathleen E.; Dolan, Siobhan M.
2012-01-01
Background With current genetic technology, it is possible to detect mutations associated with long QT syndrome (LQTS), a hereditary cardiac arrhythmia syndrome. As a result, prospective parents diagnosed with LQTS will have to decide whether or not to prevent its transmission to future generations, either by not procreating or through the use of assisted reproductive technologies or prenatal testing. This paper explores how a hereditary predisposition to sudden cardiac death can influence reproductive decision making. Methods This study draws from interviews and focus groups with individuals who have personal or family histories of cardiac arrhythmia or sudden death. A keyword search was conducted on interview transcripts to identify quotes for analysis. Results Participants expressed complex, often ambivalent attitudes about the prospect of having a child with a predisposition to sudden cardiac death. Their comments reveal conflicting understandings of genetic responsibility and reflect the variable effects of personal experience on reproductive decision making. This paper compares attitudes towards LQTS and other genetic conditions in analyzing the themes that emerged in interviews and focus groups. Conclusions The “disability critique” of prenatal testing should be applied carefully to a context of genetic predisposition to sudden cardiac death in order to understand reproductive decision making. Firsthand experience with the condition, among other factors, can weigh heavily in those decisions. PMID:22822470
Advance Directive in End of Life Decision-Making among the Yoruba of South-Western Nigeria
Jegede, Ayodele Samuel; Adegoke, Olufunke Olufunsho
2017-01-01
End-of-life decision making is value-laden within the context of culture and bioethics. Also, ethics committee role is difficult to understand on this, thus need for ethnomethodological perspective in an expanding bioethical age. Anthropological approach was utilized to document Yoruba definition and perspective of death, cultural beliefs about end-of-life decision making, factors influencing it and ethics committee role. Interviews were conducted among selected Yoruba resident in Akinyele LGA, Oyo State, Nigeria. Content analytical approach was used for data analysis. Yoruba culture, death is socially constructed having spiritual, physical and social significance. Relationship between the dying and significant others influences decision making. Hierarchy of authority informs implementing traditional advance directive. Socialization, gender, patriarchy, religious belief and tradition are major considerations in end-of-life decision making. Awareness, resource allocation and advocacy are important ethics committees’ roles. Further research into cultural diversity of end-of-life decision making will strengthen ethical practice in health care delivery. PMID:28344984
Advance Directive in End of Life Decision-Making among the Yoruba of South-Western Nigeria.
Jegede, Ayodele Samuel; Adegoke, Olufunke Olufunsho
2016-11-01
End-of-life decision making is value-laden within the context of culture and bioethics. Also, ethics committee role is difficult to understand on this, thus need for ethnomethodological perspective in an expanding bioethical age. Anthropological approach was utilized to document Yoruba definition and perspective of death, cultural beliefs about end-of-life decision making, factors influencing it and ethics committee role. Interviews were conducted among selected Yoruba resident in Akinyele LGA, Oyo State, Nigeria. Content analytical approach was used for data analysis. Yoruba culture, death is socially constructed having spiritual, physical and social significance. Relationship between the dying and significant others influences decision making. Hierarchy of authority informs implementing traditional advance directive. Socialization, gender, patriarchy, religious belief and tradition are major considerations in end-of-life decision making. Awareness, resource allocation and advocacy are important ethics committees' roles. Further research into cultural diversity of end-of-life decision making will strengthen ethical practice in health care delivery.
Goals of Care or Goals of Trust? How Family Members Perceive Goals for Dying Nursing Home Residents.
Rosemond, Cherie; Hanson, Laura C; Zimmerman, Sheryl
2017-04-01
Dementia affects more than 5 million Americans, and is a leading cause of death. Family members of nursing home (NH) residents with advanced dementia report difficulty making decisions about care toward the end of life. As part of a randomized trial testing an intervention to improve decision making, this qualitative study aimed to understand how family decision makers experienced goal-based decision making in advance of the death of their relative. This qualitative study was conducted as part of the goals of care clinical trial. Study participants (n = 16) were family decision makers in North Carolina whose relative with advanced dementia died after participating in the goals of care intervention. Semi-structured interviews were analyzed using a qualitative description approach. Family members' experience of decision making and death differed based on the presence or absence of trusting relationships with NH staff. Family members who reported trust described a positive end-of-life experience and less need for prescribed goals of care discussions. In the absence of trust, family members reported that goals of care discussions were ignored by staff or created confusion. Among family members of persons who recently died from dementia in NHs, expressions of trust in staff were strongly related to perceptions of decision making about goals of care. Although goals of care discussions may potentially promote communication to earn trust, the presence of pre-existing trust ultimately influenced the decision making and end-of-life experiences of residents and families.
Harris, Kevin R; Eccles, David W; Freeman, Carlos; Ward, Paul
2017-08-01
Research on decision-making under stress has mainly involved laboratory-based studies with few contextual descriptions of decision-making under stress in the natural ecology. We examined how police officers prepared for, coped with and made decisions under threat-of-death stress during real events. A delayed retrospective report method was used to elicit skilled police officers' thoughts and feelings during attempts to resolve such events. Reports were analysed to identify experiences of stress and coping, and thought processes underpinning decision-making during the event. Officers experienced a wide range of events, coped with stress predominantly via problem-focused strategies, and adapted their decision-making under stress based on the available context. Future officer training should involve a greater variety of training scenarios than is involved in current training, and expose trainees to the possible variants of each situation to foster better situational representation and, thus, a more reliable and adaptive mental model for use in decision-making. Practitioner Summary: This study concerns decision-making and coping strategies used by skilled police officers during real threat-of-death situations. Officers' decision-making strategies differed according to the complexity of the situation and they coped with the stress of these situations via attempts to resolve the situations (e.g. by planning responses) and, to a lesser extent, via attempts to deal with their emotions.
Adult patient decision-making regarding implantation of complex cardiac devices: a scoping review.
Malecki-Ketchell, Alison; Marshall, Paul; Maclean, Joan
2017-10-01
Complex cardiac rhythm management device (CRMD) therapy provides an important treatment option for people at risk of sudden cardiac death. Despite the survival benefit, device implantation is associated with significant physical and psychosocial concerns presenting considerable challenges for the decision-making process surrounding CRMD implantation for patients and physicians. The purpose of this scoping review was to explore what is known about how adult (>16 years) patients make decisions regarding implantation of CRMD therapy. Published, peer reviewed, English language studies from 2000 to 2016 were identified in a search across eight healthcare databases. Eligible studies were concerned with patient decision-making for first time device implantation. Quality assessment was completed using the mixed methods appraisal tool for all studies meeting the inclusion criteria. The findings of eight qualitative and seven quantitative studies, including patients who accepted or declined primary or secondary sudden cardiac death prevention devices, were clustered into two themes: knowledge acquisition and the process of decision-making, exposing similarities and distinctions with the treatment decision-making literature. The review revealed some insight in to the way patients approach decision-making but also exposed a lack of clarity and research activity specific to CRMD patients. Further research is recommended to support the development and application of targeted decision support mechanisms.
Bedside nurse involvement in end-of-life decision making: a brief review of the literature.
Erickson, Jodi
2013-01-01
Bedside nurses in the critical care setting deal with death on a regular basis. Historically, end-of-life decision making has been addressed by physicians with the family and patient, yet nurses may be a better resource for families during the decision-making process. The purpose of this article was to provide a brief review of literature surrounding end-of-life decision making. As patient advocates, nurses should be more actively involved with facilitating the end-of-life decision-making process for critically ill patients and their families.
Richards, Tara N; Smith, M Dwayne; Fogel, Sondra J; Bjerregaard, Beth
2015-08-01
Prior research suggests that homicide cases involving familial offenders and victims are subject to a "domestic discount" that reduces sentencing severity. However, the operation of a domestic discount in regard to death penalty sentencing has been rarely examined. The current research uses a near-population of jury decisions in capital murder trials conducted in North Carolina from 1991 to 2009 (n = 800), and a series of logistic regression analyses to determine whether there is (a) a direct effect between offender-victim relationship (e.g., domestic, friend/acquaintance, and stranger) and jury decision making, and/or (b) whether domestic offender-victim relationship (as well as other offender-victim relationships) moderates the effect of legal and extralegal case characteristics on jury assessment of the death penalty. Our findings revealed no empirical support for a "domestic discount" whereby juries are less likely to impose death sentences in cases involving domestic homicides. However, substantial differences in predictors of death sentencing were found across offender-victim dyads; most notably, domestic homicide cases demonstrated the most legalistic model of jury decisions to impose death sentences. (c) 2015 APA, all rights reserved).
Health Care Decisions at the End of Life: Theological and Ethical Foundations for Decision Making.
ERIC Educational Resources Information Center
Allegretti, Joseph G.
This paper provides a framework for making sense of perplexing problems surrounding issues of death and dying by exploring the theological and ethical background to health care decision making at the end of life. The paper first examines several of the basic principles that theologians and secular ethicists employ when analyzing such questions.…
Do neonatologists limit parental decision-making authority? A Canadian perspective.
Albersheim, Susan G; Lavoie, Pascal M; Keidar, Yaron D
2010-12-01
According to the principles of family-centered care, fully informed parents and health care professionals are partners in the care of sick neonates. The aim of this study was to assess the attitudes of Canadian neonatologists towards the authority of parents to make life-and-death decisions for their babies. We interviewed 121 (74%) of the 164 practicing neonatologists in Canada (June 2004-March 2005), using scripted open-ended questions and common clinical scenarios. Data analysis employed interpretive description methodology. The main outcome measure was the intention of neonatologists to limit parental life-and-death decision-making authority, when they disagree with parental decisions. Neonatologists' self-rated respect for parental decision-making authority was 8/10. Most neonatologists thought that parents should be either primary decision-makers or part of the decision-making team. Fifty-six percent of neonatologists would limit parental decision-making authority if the parents' decision is not in the baby's "best interest". In response to common neonatal severe illness scenarios, up to 18% of neonatologists said they would limit parental decision-making, even if the chance of intact survival is very poor. For clinical scenarios with equally poor long-term outcomes, neonatologists were more likely to comply with parental wishes early in the life of a baby, particularly with documented brain injury. Canadian neonatologists espouse high regard for parental decision-making authority, but are prepared to limit parental authority if the parents' decision is not thought to be in the baby's best interest. Although neonatologists advise parents that treatment can be started at birth, and stopped later, this was only for early severe brain injury. Copyright © 2010 Elsevier Ltd. All rights reserved.
Jennings, Wesley G; Richards, Tara N; Smith, M Dwayne; Bjerregaard, Beth; Fogel, Sondra J
2015-07-01
A small body of prior research has examined the impact of victim sex on jury death penalty decision-making and the majority of this research has demonstrated some evidence of a "female victim effect" such that cases involving a female victim are more likely to receive the death penalty than similarly situated cases with a male victim. However, within this line of research studies have suggested that victim sex may work in conjunction with other case characteristics. In order to further explore this phenomenon, the current study examines a near-population of death penalty cases from North Carolina (n=1069) from 1977-2009 using propensity score matching. Results demonstrate that once cases are matched on more than 50 legal and extralegal case characteristics, there is no statistically significant or substantive link between victim sex and death penalty decision-making. Findings suggest that it is concrete differences in the legal and extralegal factors observed in cases with female victims compared to male victims that shape jury death sentence decisions rather than a direct effect of victim sex (before matching: OR=1.53; 95% CI=1.20-1.95; p<.001/after matching: OR=0.90; 95% CI=0.66-1.24; p=.52). Study limitations and implications are also discussed. Copyright © 2015 Elsevier Inc. All rights reserved.
Challenging patient deaths in pediatric oncology.
Granek, Leeat; Bartels, Ute; Scheinemann, Katrin; Barrera, Maru
2015-08-01
Pediatric oncologists look after patients and their families for extended periods of time when they are diagnosed and treated for cancer. Twenty percent of these children will die while under their care. The purpose of this study was to explore what makes patient deaths challenging for pediatric oncologists. Twenty-one Canadian pediatric oncologists were interviewed about their experiences with patient death and were probed about the factors that make patient deaths particularly challenging. Data were analyzed using the grounded theory method. Challenging factors pertaining to patient death were categorized into three main domains. Relational factors included dealing with families perceived as challenging; identifying with parents; and having long-term relationships and special connections with patients and their caregivers. The second domain captured the process of death and dying and included death after curative treatment was stopped; death caused by complications; and unexpected deaths. The third domain encompassed patient factors that included suffering of the child, and the sense that no child should die. The types of relationships pediatric oncologists have with patients and caregivers, and the process by which children die affects pediatric oncologists' perceived level of difficulty in coping with the death. The findings point to the complexity of working with children where parents are included in the decision-making processes around a child's treatment. Implementation of structured review opportunities around patient death and associated decision-making within a multidisciplinary healthcare team may alleviate some of the emotional burden associated with patient deaths.
Religion and Spirituality in Surrogate Decision Making for Hospitalized Older Adults.
Geros-Willfond, Kristin N; Ivy, Steven S; Montz, Kianna; Bohan, Sara E; Torke, Alexia M
2016-06-01
We conducted semi-structured interviews with 46 surrogate decision makers for hospitalized older adults to characterize the role of spirituality and religion in decision making. Three themes emerged: (1) religion as a guide to decision making, (2) control, and (3) faith, death and dying. For religious surrogates, religion played a central role in end of life decisions. There was variability regarding whether God or humans were perceived to be in control; however, beliefs about control led to varying perspectives on acceptance of comfort-focused treatment. We conclude that clinicians should attend to religious considerations due to their impact on decision making.
Religion and Spirituality in Surrogate Decision Making for Hospitalized Older Adults
Geros, Kristin N.; Ivy, Steven S.; Montz, Kianna; Bohan, Sara E.; Torke, Alexia M.
2015-01-01
We conducted semi-structured interviews with 46 surrogate decision makers for hospitalized older adults to characterize the role of spirituality and religion in decision making. Three themes emerged: (1) religion as a guide to decision making, (2) control, and (3) faith, death and dying. For religious surrogates, religion played a central role in end of life decisions. There was variability regarding whether God or humans were perceived to be in control; however beliefs about control led to varying perspectives on acceptance of comfort-focused treatment. We conclude that clinicians should attend to religious considerations due to their impact on decision making. PMID:26337437
Birchley, Giles; Jones, Kerry; Huxtable, Richard; Dixon, Jeremy; Kitzinger, Jenny; Clare, Linda
2016-07-27
In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we conducted a scoping review and thematic synthesis. To capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature. Initial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as 'natural' and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making (in all its forms), its influence on policy and decision-making, and some caveats that arise from the studies. Together these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury.
End-of-life decisions in Dutch neonatal intensive care units.
Verhagen, A A Eduard; Dorscheidt, Jozef H H M; Engels, Bernadette; Hubben, Joep H; Sauer, Pieter J
2009-10-01
To clarify the practice of end-of-life decision making in severely ill newborns. Retrospective descriptive study with face-to-face interviews. The 10 neonatal intensive care units in the Netherlands from October 2005 to September 2006. All 367 newborn infants who died in the first 2 months of life in Dutch neonatal intensive care units. Adequate documentation was available in 359 deaths. Presence of end-of-life decisions, classification of deaths in 3 groups, and physicians' considerations leading to end-of-life decisions. An end-of-life decision preceded death in 95% of cases, and in 5% treatment was continued until death. Of all of the deaths, 58% were classified as having no chance of survival and 42% were stabilized newborns with poor prognoses. Withdrawal of life-sustaining therapy was the main mode of death in both groups. One case of deliberate ending of life was found. In 92% of newborns with poor prognoses, end-of-life decisions were based on patients' future quality of life and mainly concerned future suffering. Considerations regarding the infant's present state were made in 44% of infants. Virtually all deaths in Dutch neonatal intensive care units are preceded by the decision to withdraw life-sustaining treatment and many decisions are based on future quality of life. The decision to deliberately end the life of a newborn may occur less frequently than was previously assumed.
Initiating decision-making conversations in palliative care: an ethnographic discourse analysis.
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; Macdonald, Mary Ellen; Marchand, Robert
2014-01-01
Conversations about end-of-life care remain challenging for health care providers. The tendency to delay conversations about care options represents a barrier that impedes the ability of terminally-ill patients to participate in decision-making. Family physicians with a palliative care practice are often responsible for discussing end-of-life care preferences with patients, yet there is a paucity of research directly observing these interactions. In this study, we sought to explore how patients and family physicians initiated decision-making conversations in the context of a community hospital-based palliative care service. This qualitative study combined discourse analysis with ethnographic methods. The field research lasted one year, and data were generated through participant observation and audio-recordings of consultations. A total of 101 consultations were observed longitudinally between 18 patients, 6 family physicians and 2 pivot nurses. Data analysis consisted in exploring the different types of discourses initiating decision-making conversations and how these discourses were affected by the organizational context in which they took place. The organization of care had an impact on decision-making conversations. The timing and origin of referrals to palliative care shaped whether patients were still able to participate in decision-making, and the decisions that remained to be made. The type of decisions to be made also shaped how conversations were initiated. Family physicians introduced decision-making conversations about issues needing immediate attention, such as symptom management, by directly addressing or eliciting patients' complaints. When decisions involved discussing impending death, decision-making conversations were initiated either indirectly, by prompting the patients to express their understanding of the disease and its progression, or directly, by providing a justification for broaching a difficult topic. Decision-making conversations and the initiation thereof were framed by the organization of care and the referral process prior to initial encounters. While symptom management was taken for granted as part of health care professionals' expected role, engaging in decisions regarding preparation for death implicitly remained under patients' control. This work makes important clinical contributions by exposing the rhetorical function of family physicians' discourse when introducing palliative care decisions.
Santoro, Jonathan D; Bennett, Mariko
2018-04-26
Background: This manuscript reviews unique aspects of end of life decision-making in pediatrics. Methods: A narrative literature review of pediatric end of life issues was performed in the English language. Results: While a paternalistic approach is typically applied to children with life-limiting medical prognoses, the cognitive, language, and physical variability in this patient population is wide and worthy of review. In end of life discussions in pediatrics, the consideration of a child’s input is often not reviewed in depth, although a shared decision-making model is ideal for use, even for children with presumed limitations due to age. This narrative review of end of life decision-making in pediatric care explores nomenclature, the introduction of the concept of death, relevant historical studies, limitations to the shared decision-making model, the current state of end of life autonomy in pediatrics, and future directions and needs. Although progress is being made toward a more uniform and standardized approach to care, few non-institutional protocols exist. Complicating factors in the lack of guidelines include the unique facets of pediatric end of life care, including physical age, paternalism, the cognitive and language capacity of patients, subconscious influencers of parents, and normative values of death in pediatrics. Conclusions: Although there have been strides in end of life decision-making in pediatrics, further investigation and research is needed in this field.
Law & psychiatry: Death row delusions: when is a prisoner competent to be executed?
Appelbaum, Paul S
2007-10-01
This column examines a recent U.S. Supreme Court decision in Panetti v. Quarterman, which embraced a broader view of what makes death row prisoners incompetent to be executed. Although the defendant understood that he was to be executed and the state's purported reason for seeking his death--two criteria suggested by the Court's 1986 decision in Ford v. Wainwright--he suffered from a fixed delusion about the actual reason for his death. The Court indicated that competent prisoners must have a "rational understanding" of the reason that a death penalty is being imposed but declined to define a clear standard.
Medicine, psychiatry and euthanasia: an argument against mandatory psychiatric review.
Parker, M
2000-04-01
The paper critically appraises the argument that requests for active assistance to die should be subject to mandatory psychiatric assessment. The argument for mandatory psychiatric assessment is usually supported by an appeal to the need for safeguards against errors and omissions in both the diagnosis of psychiatric conditions affecting the terminally ill and the exploration of the meanings of their requests. This intuitively appealing view is challenged through a broader analysis which examines connections between medicine's traditional adherence to the moral distinction between acts and omissions and the following issues: the historical relationship between medical practice and dying, the recent development of research into treatment-withdrawal decisions, the scientific status of psychiatry, the logic of rationality and decision-making competence. The analysis reveals a number of hitherto unexamined and unacknowledged influences which would make psychiatric review of requests for assisted death a much less objective and impartial process than is assumed. Mandatory psychiatric review is an instance of the medicalisation of death and dying which could abridge the freedom of certain individuals to make decisions about their deaths.
Ganz, F D; Benbenishty, J; Hersch, M; Fischer, A; Gurman, G; Sprung, C L
2006-04-01
Decisions of patients, families, and health care providers about medical care at the end of life depend on many factors, including the societal culture. A pan-European study was conducted to determine the frequency and types of end of life practices in European intensive care units (ICUs), including those in Israel. Several results of the Israeli subsample were different to those of the overall sample. The objective of this article was to explore these differences and provide a possible explanation based on the impact of culture on end of life decision making. All adult patients admitted consecutively to three Israeli ICUs (n = 2778) who died or underwent any limitation of life saving interventions between 1 January 1999 and 30 June 2000 were studied prospectively (n = 363). These patients were compared with a similar sample taken from the larger study (ethics in European intensive care units: ETHICUS) carried out in 37 European ICUs. Patients were followed until discharge, death, or 2 months from the decision to limit therapy. End of life decisions were prospectively organised into one of five mutually exclusive categories: cardiopulmonary resuscitation (CPR), brain death, withholding treatment, withdrawing treatment, and active shortening of the dying process (SDP). The data also included patient characteristics (gender, age, ICU admission diagnosis, chronic disorders, date of hospital admission, date and time of decision to limit therapy, date of hospital discharge, date and time of death in hospital), specific therapies limited, and the method of SDP. The majority of patients (n = 252, 69%) had treatment withheld, none underwent SDP, 62 received CPR (17%), 31 had brain death (9%), and 18 underwent withdrawal of treatment (5%). The primary reason given for limiting treatment was that the patient was unresponsive to therapy (n = 187). End of life discussions were held with 132 families (36%), the vast majority of which revolved around withholding treatment (91% of the discussions) and the remainder concerned withdrawing treatment (n = 11, 9%). There was a statistically significant association (chi2 = 830.93, df = 12, p < 0.0001) between the type of end of life decision and region-that is, the northern region of Europe, the central region, the southern region, and Israel. Regional culture plays an important part in end of life decision making. Differences relating to end of life decision making exist between regions and these differences can often be attributed to cultural factors. Such cultures not only affect patients and their families but also the health care workers who make and carry out such decisions.
Euthanasia--he illusion of autonomy.
Hartling, O J
2006-03-01
The paper deals with some of the more common arguments used for the legalisation of voluntary euthanasia. It looks at these arguments from an ethical and philosophical point of view. First, the argument that to offer a person the possibility of euthanasia is to respect that person's autonomy is questionable. Can a person's decision on euthanasia be really autonomous? If euthanasia were legal everybody would be conscious of this option: the patient, the doctor, the family and the nursing staff. Thus, there could be indirect pressure on the patient to make a decision. The choice is meant to be free but the patient is not free not to make the choice. Secondly, a choice that seeks to alleviate suffering and thus improve life by annihilating it is irrational. Thirdly, autonomy as to one's own death is hardly exercised freely. Even an otherwise competent person may not be competent in deciding on his own death on account of despair, hopelessness, fear or maybe a feeling of being weak, superfluous and unwanted. This is a very uncertain base for decision-making, especially in the irrevocable decision of euthanasia. Finally, a competent person usually makes any choice in a responsible way and after due consideration; a 'good' decision should consider and respect the wishes and feelings of others. This will be no less the case in making a decision on the so-called free choice of euthanasia. Thus 'normal' behaviour in decision making will only add to the tendency of the already depressed person to feel a burden on his family, the staff and even on society.
ERIC Educational Resources Information Center
Schroeder, Julie; Guin, Cecile C.; Pogue, Rene; Bordelon, Danna
2006-01-01
Providing an effective defense for individuals charged with capital crimes requires a diligent, thorough investigation by a mitigation specialist. However, research suggests that mitigation often plays a small role in the decision for life. Jurors often make sentencing decisions prematurely, basing those decisions on their personal reactions to…
Alonso-Babarro, Alberto; Bruera, Eduardo; Varela-Cerdeira, María; Boya-Cristia, María Jesús; Madero, Rosario; Torres-Vigil, Isabel; De Castro, Javier; González-Barón, Manuel
2011-01-01
Purpose The purpose of this study was to identify factors associated with at-home death among patients with advanced cancer and create a decision-making model for discharging patients from an acute-care hospital. Patients and Methods We conducted an observational cohort study to identify the association between place of death and the clinical and demographic characteristics of patients with advanced cancer who received care from a palliative home care team (PHCT) and of their primary caregivers. We used logistic regression analysis to identify the predictors of at-home death. Results We identified 380 patients who met the study inclusion criteria; of these, 245 patients (64%) died at home, 72 (19%) died in an acute-care hospital, 60 (16%) died in a palliative care unit, and three (1%) died in a nursing home. Median follow-up was 48 days. We included the 16 variables that were significant in univariate analysis in our decision-making model. Five variables predictive of at-home death were retained in the multivariate analysis: caregiver's preferred place of death, patients' preferred place of death, caregiver's perceived social support, number of hospital admission days, and number of PHCT visits. A subsequent reduced model including only those variables that were known at the time of discharge (caregivers' preferred place of death, patients' preferred place of death, and caregivers' perceived social support) had a sensitivity of 96% and a specificity of 81% in predicting place of death. Conclusion Asking a few simple patient- and family-centered questions may help to inform the decision regarding the best place for end-of-life care and death. PMID:21343566
Decision-making in a death investigation: Emotion, families and the coroner.
Tait, Gordon; Carpenter, Belinda; Quadrelli, Carol; Barnes, Michael
2016-03-01
The role of the coroner in common law countries such as Australia, England, Canada and New Zealand is to preside over death investigations where there is uncertainty as to the manner of death, a need to identify the deceased, a death of unknown cause, or a violent or unnatural death. The vast majority of these deaths are not suspicious and thus require coroners to engage with grieving families who have been thrust into a legal process through the misfortune of a loved one's sudden or unexpected death. In this research, 10 experienced coroners discussed how they negotiated the grief and trauma evident in a death investigation. In doing so, they articulated two distinct ways in which legal officers engaged with emotions, which are also evident in the literature. The first engages the script of judicial dispassion, articulating a hierarchical relationship between reason and emotion, while the second introduces an ethic of care via the principles of therapeutic jurisprudence, and thus offers a challenge to the role of emotion in the personae of the professional judicial officer. By using Hochschild's work on the sociology of emotions, this article discusses the various ways in which coroners manage the emotion of a death investigation through emotion work. While emotional distance may be an understandable response by coroners to the grief and trauma experienced by families and directed at cleaner coronial decision-making, the article concludes that coroners may be better served by offering emotions such as sympathy, consideration and compassion directly to the family in those situations where families are struggling to accept, or are resistant to, coroners' decisions.
ERIC Educational Resources Information Center
Wagemans, A.; van Schrojenstein Lantman-de Valk, H.; Proot, I.; Metsemakers, J.; Tuffrey-Wijne, I.; Curfs, L.
2013-01-01
Background: The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods: This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with…
Life and Death Decision Making, by Baruch A. Brody.
Veatch, Robert M
1989-04-01
Veatch considers the pluralistic casuistry theory advocated by Baruch Brody in his 1988 book, Life and Death Decision Making, to be an important contribution to the secular medical ethics literature. The casuistic and pluralistic elements of Brody's new model are described as intriguing but controversial because Brody both excludes several ethical appeals (i.e., classical Hippocratic ethics, virtue theory) and/or limits other questionable appeals (i.e., consequences for families and others in society, the virtue of integrity) without accounting for these decisions. Veatch also questions Brody's use of intuitional judgment to determine what ought to be done after examination of various appeals and their significance because Brody's approach raises serious problems about how various appeals are counted. Veatch does affirm the rich assessment of medical ethical problems made possible by Brody's pluralistic approach but notes the difficulties it raises.
Geographic variation in inquest rates in Australia.
Walter, Simon J; Bugeja, Lyndal; Spittal, Matthew J; Studdert, David M
2012-11-01
This paper examines the relationship between the remoteness of locations in which deaths occur and coroners' decisions to hold inquests. We analysed 16,242 deaths investigated by coroners in three Australian states over 7.5 yrs. We used a choropleth map to show inquest rates in each remoteness locality (excluding deaths for which inquests were mandated by statute). We then used adjusted logistic regression to assess the association between the remoteness of a death's location and the odds coroners would select it for investigation by inquest. We found the remoteness of a death's location strongly and positively predicts the chance that an inquest will be held. Like analogous findings in the delivery of health services, this small-area variation in legal decision making raises questions of appropriateness. Copyright © 2012 Elsevier Ltd. All rights reserved.
Attitudes toward Infection Prophylaxis in Pediatric Oncology: A Qualitative Approach
Diorio, Caroline; Tomlinson, Deborah; Boydell, Katherine M.; Regier, Dean A.; Ethier, Marie-Chantal; Alli, Amanda; Alexander, Sarah; Gassas, Adam; Taylor, Jonathan; Kellow, Charis; Mills, Denise; Sung, Lillian
2012-01-01
Background The risks and benefits of infection prophylaxis are uncertain in children with cancer and thus, preferences should be considered in decision making. The purpose of this report was to describe the attitudes of parents, children and healthcare professionals to infection prophylaxis in pediatric oncology. Methods The study was completed in three phases: 1) An initial qualitative pilot to identify the main attributes influencing the decision to use infection prophylaxis, which were then incorporated into a discrete choice experiment; 2) A think aloud during the discrete choice experiment in which preferences for infection prophylaxis were elicited quantitatively; and 3) In-depth follow up interviews. Interviews were recorded verbatim and analyzed using an iterative, thematic analysis. Final themes were selected using a consensus approach. Results A total of 35 parents, 22 children and 28 healthcare professionals participated. All three groups suggested that the most important factor influencing their decision making was the effect of prophylaxis on reducing the chance of death. Themes of importance to the three groups included antimicrobial resistance, side effects of medications, the financial impact of outpatient prophylaxis and the route and schedule of administration. Conclusion Effect of prophylaxis on risk of death was a key factor in decision making. Other identified factors were antimicrobial resistance, side effects of medication, financial impact and administration details. Better understanding of factors driving decision making for infection prophylaxis will help facilitate future implementation of prophylactic regiments. PMID:23112849
Attitudes toward infection prophylaxis in pediatric oncology: a qualitative approach.
Diorio, Caroline; Tomlinson, Deborah; Boydell, Katherine M; Regier, Dean A; Ethier, Marie-Chantal; Alli, Amanda; Alexander, Sarah; Gassas, Adam; Taylor, Jonathan; Kellow, Charis; Mills, Denise; Sung, Lillian
2012-01-01
The risks and benefits of infection prophylaxis are uncertain in children with cancer and thus, preferences should be considered in decision making. The purpose of this report was to describe the attitudes of parents, children and healthcare professionals to infection prophylaxis in pediatric oncology. THE STUDY WAS COMPLETED IN THREE PHASES: 1) An initial qualitative pilot to identify the main attributes influencing the decision to use infection prophylaxis, which were then incorporated into a discrete choice experiment; 2) A think aloud during the discrete choice experiment in which preferences for infection prophylaxis were elicited quantitatively; and 3) In-depth follow up interviews. Interviews were recorded verbatim and analyzed using an iterative, thematic analysis. Final themes were selected using a consensus approach. A total of 35 parents, 22 children and 28 healthcare professionals participated. All three groups suggested that the most important factor influencing their decision making was the effect of prophylaxis on reducing the chance of death. Themes of importance to the three groups included antimicrobial resistance, side effects of medications, the financial impact of outpatient prophylaxis and the route and schedule of administration. Effect of prophylaxis on risk of death was a key factor in decision making. Other identified factors were antimicrobial resistance, side effects of medication, financial impact and administration details. Better understanding of factors driving decision making for infection prophylaxis will help facilitate future implementation of prophylactic regiments.
McMeekin, Peter; Flynn, Darren; Ford, Gary A; Rodgers, Helen; Gray, Jo; Thomson, Richard G
2015-11-11
Individualised prediction of outcomes can support clinical and shared decision making. This paper describes the building of such a model to predict outcomes with and without intravenous thrombolysis treatment following ischaemic stroke. A decision analytic model (DAM) was constructed to establish the likely balance of benefits and risks of treating acute ischaemic stroke with thrombolysis. Probability of independence, (modified Rankin score mRS ≤ 2), dependence (mRS 3 to 5) and death at three months post-stroke was based on a calibrated version of the Stroke-Thrombolytic Predictive Instrument using data from routinely treated stroke patients in the Safe Implementation of Treatments in Stroke (SITS-UK) registry. Predictions in untreated patients were validated using data from the Virtual International Stroke Trials Archive (VISTA). The probability of symptomatic intracerebral haemorrhage in treated patients was incorporated using a scoring model from Safe Implementation of Thrombolysis in Stroke-Monitoring Study (SITS-MOST) data. The model predicts probabilities of haemorrhage, death, independence and dependence at 3-months, with and without thrombolysis, as a function of 13 patient characteristics. Calibration (and inclusion of additional predictors) of the Stroke-Thrombolytic Predictive Instrument (S-TPI) addressed issues of under and over prediction. Validation with VISTA data confirmed that assumptions about treatment effect were just. The C-statistics for independence and death in treated patients in the DAM were 0.793 and 0.771 respectively, and 0.776 for independence in untreated patients from VISTA. We have produced a DAM that provides an estimation of the likely benefits and risks of thrombolysis for individual patients, which has subsequently been embedded in a computerised decision aid to support better decision-making and informed consent.
Simulation and Modeling Efforts to Support Decision Making in Healthcare Supply Chain Management
Lazarova-Molnar, Sanja
2014-01-01
Recently, most healthcare organizations focus their attention on reducing the cost of their supply chain management (SCM) by improving the decision making pertaining processes' efficiencies. The availability of products through healthcare SCM is often a matter of life or death to the patient; therefore, trial and error approaches are not an option in this environment. Simulation and modeling (SM) has been presented as an alternative approach for supply chain managers in healthcare organizations to test solutions and to support decision making processes associated with various SCM problems. This paper presents and analyzes past SM efforts to support decision making in healthcare SCM and identifies the key challenges associated with healthcare SCM modeling. We also present and discuss emerging technologies to meet these challenges. PMID:24683333
Gkigkitzis, Ioannis
2013-01-01
The aim of this report is to provide a mathematical model of the mechanism for making binary fate decisions about cell death or survival, during and after Photodynamic Therapy (PDT) treatment, and to supply the logical design for this decision mechanism as an application of rate distortion theory to the biochemical processing of information by the physical system of a cell. Based on system biology models of the molecular interactions involved in the PDT processes previously established, and regarding a cellular decision-making system as a noisy communication channel, we use rate distortion theory to design a time dependent Blahut-Arimoto algorithm where the input is a stimulus vector composed of the time dependent concentrations of three PDT related cell death signaling molecules and the output is a cell fate decision. The molecular concentrations are determined by a group of rate equations. The basic steps are: initialize the probability of the cell fate decision, compute the conditional probability distribution that minimizes the mutual information between input and output, compute the cell probability of cell fate decision that minimizes the mutual information and repeat the last two steps until the probabilities converge. Advance to the next discrete time point and repeat the process. Based on the model from communication theory described in this work, and assuming that the activation of the death signal processing occurs when any of the molecular stimulants increases higher than a predefined threshold (50% of the maximum concentrations), for 1800s of treatment, the cell undergoes necrosis within the first 30 minutes with probability range 90.0%-99.99% and in the case of repair/survival, it goes through apoptosis within 3-4 hours with probability range 90.00%-99.00%. Although, there is no experimental validation of the model at this moment, it reproduces some patterns of survival ratios of predicted experimental data. Analytical modeling based on cell death signaling molecules has been shown to be an independent and useful tool for prediction of cell surviving response to PDT. The model can be adjusted to provide important insights for cellular response to other treatments such as hyperthermia, and diseases such as neurodegeneration.
Kryworuchko, Jennifer; Matlock, Dan D.; Volandes, Angelo E.
2011-01-01
Abstract Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. If patients lose capacity, then surrogate decision makers are cast into the decision-making role. The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families. PMID:21895453
Lama, Tsering P; Khatry, Subarna K; Katz, Joanne; LeClerq, Steven C; Mullany, Luke C
2017-12-21
Identification of maternal and newborn illness and the decision-making and subsequent care-seeking patterns are poorly understood in Nepal. We aimed to characterize the process and factors influencing recognition of complications, the decision-making process, and care-seeking behavior among families and communities who experienced a maternal complication, death, neonatal illness, or death in a rural setting of Nepal. Thirty-two event narratives (six maternal/newborn deaths each and 10 maternal/newborn illnesses each) were collected using in-depth interviews and small group interviews. We purposively sampled across specific illness and complication definitions, using data collected prospectively from a cohort of women and newborns followed from pregnancy through the first 28 days postpartum. The event narratives were coded and analyzed for common themes corresponding to three main domains of illness recognition, decision-making, and care-seeking; detailed event timelines were created for each. While signs were typically recognized early, delays in perceiving the severity of illness compromised prompt care-seeking in both maternal and newborn cases. Further, care was often sought initially from informal health providers such as traditional birth attendants, traditional healers, and village doctors. Key decision-makers were usually female family members; husbands played limited roles in decisions related to care-seeking, with broader family involvement in decision-making for newborns. Barriers to seeking care at any type of health facility included transport problems, lack of money, night-time illness events, low perceived severity, and distance to facility. Facility care was often sought only after referral or following treatment failure from an informal provider and private facilities were sought for newborn care. Respondents characterized government facility-based care as low quality and reported staff rudeness and drug type and/or supply stock shortages. Delaying the decision to seek skilled care was common in both newborn and maternal cases. Among maternal cases, delays in receiving appropriate care when at a facility were also seen. Improved recognition of danger signs and increased demand for skilled care, motivated through community level interventions and health worker mobilization, needs to be encouraged. Engaging informal providers through training in improved danger sign identification and prompt referral, especially for newborn illnesses, is recommended.
ERIC Educational Resources Information Center
Carr, Deborah
2012-01-01
Purpose of the Study: I examine whether 5 aspects of a significant other's death quality (pain, decision-making capacity, location, problems with end-of life care, and preparation) affect whether one does advance care planning (ACP). I also identify specific aspects of others' deaths that respondents say triggered their own planning. Design and…
Complex Decision-Making in Heart Failure: A Systematic Review and Thematic Analysis.
Hamel, Aimee V; Gaugler, Joseph E; Porta, Carolyn M; Hadidi, Niloufar Niakosari
Heart failure follows a highly variable and difficult course. Patients face complex decisions, including treatment with implantable cardiac defibrillators, mechanical circulatory support, and heart transplantation. The course of decision-making across multiple treatments is unclear yet integral to providing informed and shared decision-making. Recognizing commonalities across treatment decisions could help nurses and physicians to identify opportunities to introduce discussions and support shared decision-making. The specific aims of this review are to examine complex treatment decision-making, specifically implantable cardiac defibrillators, ventricular assist device, and cardiac transplantation, and to recognize commonalities and key points in the decisional process. MEDLINE, CINAHL, PsycINFO, and Web of Science were searched for English-language studies that included qualitative findings reflecting the complexity of heart failure decision-making. Using a 3-step process, findings were synthesized into themes and subthemes. Twelve articles met criteria for inclusion. Participants included patients, caregivers, and clinicians and included decisions to undergo and decline treatment. Emergent themes were "processing the decision," "timing and prognostication," and "considering the future." Subthemes described how participants received and understood information about the therapy, making and changing a treatment decision, timing their decision and gauging health status outcomes in the context of their decision, the influence of a life or death decision, and the future as a factor in their decisional process. Commonalities were present across therapies, which involved the timing of discussions, the delivery of information, and considerations of the future. Exploring this further could help support patient-centered care and optimize shared decision-making interventions.
Rady, Mohamed Y; McGregor, Joan L; Verheijde, Joseph L
2013-11-01
We respond to Morgan and Feeley's critique on our article "Mass Media in Organ Donation: Managing Conflicting Messages and Interests." We noted that Morgan and Feeley agree with the position that the primary aims of media campaigns are: "to educate the general public about organ donation process" and "help individuals make informed decisions" about organ donation. For those reasons, the educational messages in media campaigns should not be restricted to "information from pilot work or focus groups" but should include evidence-based facts resulting from a comprehensive literature research. We consider the controversial aspects about organ donation to be relevant, if not necessary, educational materials that must be disclosed in media campaigns to comply with the legal and moral requirements of informed consent. With that perspective in mind, we address the validity of Morgan and Feeley's claim that media campaigns have no need for informing the public about the controversial nature of death determination in organ donation. Scientific evidence has proven that the criteria for death determination are inconsistent with the Uniform Determination of Death Act and therefore potentially harmful to donors. The decision by campaign designers to use the statutory definition of death without disclosing the current controversies surrounding that definition does not contribute to improved informed decision making. We argue that if Morgan and Feeley accept the important role of media campaigns to enhance informed decision making, then critical controversies should be disclosed. In support of that premise, we will outline: (1) the wide-spread scientific challenges to brain death as a concept of death; (2) the influence of the donor registry and team-huddling on the medical care of potential donors; (3) the use of authorization rather than informed consent for donor registration; (4) the contemporary religious controversy; and (5) the effects of training desk clerks as organ requestors at the Department of Motor Vehicles offices. We conclude that organ donation is a medical procedure subject to all the ethical obligations that the medical profession must uphold including that of transparency and truthfulness.
Informed consent for the diagnosis of brain death: a conceptual argument.
Muramoto, Osamu
2016-10-13
This essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for over 2 years illustrates how such a consent would have made a crucial difference. Conceptual, philosophical, and ethical analysis. I first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as "allow cardiac death", whose parallel logic with "allow natural death" is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act. My intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death.
Clarke, Gemma; Galbraith, Sarah; Woodward, Jeremy; Holland, Anthony; Barclay, Stephen
2015-06-11
Some people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining informed consent for medical interventions are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team. A three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process? Decision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: (1) Risks, burdens and benefits; (2) Treatment goals; (3) Normative ethical values; (4) Interested parties. Decision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of 'who decides' cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum.
Amyotrophic lateral sclerosis and assisted ventilation: how patients decide.
Lemoignan, Josée; Ells, Carolyn
2010-06-01
Throughout the course of their illness, people with amyotrophic lateral sclerosis (ALS) must make many treatment decisions; however, none has such a significant impact on quality of life and survival as decisions about assisted ventilation. The purpose of this study was to better understand the experience of decision-making about assisted ventilation for ALS patients. Using qualitative phenomenology methodology, 10 semi-structured interviews were conducted with persons with ALS and their caregivers to elicit factors that are pertinent to their decision-making process about assisted ventilation. Six main themes emerged from the interviews. (1) the meaning of the intervention - participants made a sharp distinction between non-invasive ventilation, which they viewed as a means to relieve symptoms of respiratory failure, and invasive ventilation, which they viewed as taking over their breathing and thereby saving their life when they otherwise would die, (2) the importance of context - including functional status, available supports, and financial implications, (3) the importance of values - with respect to communication, relationships, autonomy, life, and quality of life, (4) the effect of fears - particularly respiratory distress, chocking, running out of air, and the process of death itself, (5) the need for information - how use of assisted ventilation would impact daily life, how death from respiratory failure would occur, how caregivers and persons with ALS differ in their information needs and common misconceptions, and (6) adaptation to or acceptance of the intervention - a lengthy process that involved gradual familiarization with the equipment and its benefits. People with ALS and caregivers value autonomy in decision-making about assisted ventilation. Their decision-making process is neither wholly rational nor self-interested, and includes factors that health professionals should anticipate and address. Discussions about assisted ventilation and timing should be tailored to each individual and undertaken periodically.
Cognitive influences on self-care decision making in persons with heart failure.
Dickson, Victoria V; Tkacs, Nancy; Riegel, Barbara
2007-09-01
Despite advances in management, heart failure is associated with high rates of hospitalization, poor quality of life, and early death. Education intended to improve patients' abilities to care for themselves is an integral component of disease management programs. True self-care requires that patients make decisions about symptoms, but the cognitive deficits documented in 30% to 50% of the heart failure population may make daily decision making challenging. After describing heart failure self-care as a naturalistic decision making process, we explore cognitive deficits known to exist in persons with heart failure. Problems in heart failure self-care are analyzed in relation to neural alterations associated with heart failure. As a neural process, decision making has been traced to regions of the prefrontal cortex, the same areas that are affected by ischemia, infarction, and hypoxemia in heart failure. Resulting deficits in memory, attention, and executive function may impair the perception and interpretation of early symptoms and reasoning and, thereby, delay early treatment implementation. There is compelling evidence that the neural processes critical to decision making are located in the same structures that are affected by heart failure. Because self-care requires the cognitive ability to learn, perceive, interpret, and respond, research is needed to discern how neural deficits affects these abilities, decision-making, and self-care behaviors.
Sanders, Justin J; Chow, Vinca; Enzinger, Andrea C; Lam, Tai-Chung; Smith, Patrick T; Quiñones, Rebecca; Baccari, Andrew; Philbrick, Sarah; White-Hammond, Gloria; Peteet, John; Balboni, Tracy A; Balboni, Michael J
2017-10-01
People with serious illness frequently rely on religion/spirituality to cope with their diagnosis, with potentially positive and negative consequences. Clergy are uniquely positioned to help patients consider medical decisions at or near the end of life within a religious/spiritual framework. We aimed to examine clergy knowledge of end-of-life (EOL) care and beliefs about the role of faith in EOL decision making for patients with serious illness. Key informant interviews, focus groups, and survey. A purposive sample of 35 active clergy in five U.S. states as part of the National Clergy End-of-Life Project. We assessed participant knowledge of and desire for further education about EOL care. We transcribed interviews and focus groups for the purpose of qualitative analysis. Clergy had poor knowledge of EOL care; 75% desired more EOL training. Qualitative analysis revealed a theological framework for decision making in serious illness that balances seeking life and accepting death. Clergy viewed comfort-focused treatments as consistent with their faith traditions' views of a good death. They employed a moral framework to determine the appropriateness of EOL decisions, which weighs the impact of multiple factors and upholds the importance of God-given free will. They viewed EOL care choices to be the primary prerogative of patients and families. Clergy described ambivalence about and a passive approach to counseling congregants about decision making despite having defined beliefs regarding EOL care. Poor knowledge of EOL care may lead clergy to passively enable congregants with serious illness to pursue potentially nonbeneficial treatments that are associated with increased suffering.
Schmid, Margareta; Zellweger, Ueli; Bosshard, Georg; Bopp, Matthias
2016-01-01
In Switzerland, the prevalence of medical end-of-life practices had been assessed on a population level only once - in 2001 - until in 2013/14 an identical study was conducted. We aimed to compare the results of the 2001 and 2013 studies with a special focus on shared decision-making and patients' decision-making capacity. Our study encompassed a 21.3% sample of deaths among residents of the German-speaking part of Switzerland aged 1 year or older. From 4998 mailed questionnaires, 3173 (63.5%) were returned. All data were weighted to adjust for age- and sex-specific differences in response rates. Cases with at least one reported end-of-life practice significantly increased from 74.5% (2001) to 82.3% (2013) of all deaths eligible for an end-of-life decision (p <0.001). In 51.2% there was a combination of at least two different end-of-life decisions in one case. In relation to discussion with patients or relatives and otherwise expressed preferences of the patient, 76.5% (74.5-78.4%) of all cases with reported medical end-of-life practice in 2013 (2001: 74.4%) relied on shared decision-making, varying from 79.8% (76.5-82.7%) among not at all capable patients to 87.8% (85.0-90.2%) among fully capable patients. In contrast to a generally increasing trend, the prevalence of end-of-life practices discussed with fully capable patients decreased from 79.0% (75.3-82.3%) in 2001 to 73.2% (69.6-76.0%) in 2013 (p = 0.037). Despite a generally high incidence of end-of-life practices in Switzerland, there remains potential for further improvement in shared decision-making. Efforts to motivate physicians to involve patients and relatives may be a win-win situation.
Donatelli, Luke A; Geocadin, Romergryko G; Williams, Michael A
2006-09-01
Cardiac arrest results in global hypoxic-ischemic brain injury from which there is a range of possible neurological outcomes. In most cases, patients may require a surrogate to make decisions regarding end-of-life care, including the withdrawal of life-sustaining therapies. This article reviews ethical considerations that arise in the clinical care of patients following cardiac arrest, including decisions to continue or withdraw life-sustaining therapies; brain death determination; and organ donation in the context of brain death and cardiac death (so-called non-heart-beating donation). This article also discusses ethical concerns pertaining to the design and conduct of resuscitation research that is necessary for the development of effective therapies to prevent anoxic brain injury or promote neurological recovery.
Where Health and Death Intersect: Insights from a Terror Management Health Model.
Arndt, Jamie; Goldenberg, Jamie L
2017-01-01
This paper offers an integrative understanding of the intersection between "health" and "death" from the perspective of the terror management health model. After highlighting the potential for health-related situations to elicit concerns about mortality, we turn to the question, how do thoughts of death influence health decision-making? Across varied health domains, the answer depends on whether these cognitions are in conscious awareness or not. When mortality concerns are conscious, people engage in healthy intentions and behavior if efficacy and coping resources are present. In contrast, when contending with accessible but non-conscious thoughts of death, health relevant decisions are guided more by esteem implications of the behavior. Lastly, we present research suggesting how these processes can be leveraged to facilitate health promotion and reduce health risk.
End-of-life decision-making and terminal sedation among very old patients.
De Gendt, Cindy; Bilsen, Johan; Mortier, Freddy; Vander Stichele, Robert; Deliens, Luc
2009-01-01
About half of the persons who die in developed countries are very old (aged 80 years or older) and this proportion is still rising. In general, there is little information available concerning the circumstances and quality of the end of life of this group. This study aims (1) to describe the incidence and characteristics of medical end-of-life decisions with a possible or certain life-shortening effect (ELDs) and terminal sedation among very old patients who died nonsuddenly, (2) to describe the characteristics of the preceding decision-making process, and (3) to compare this with the deaths of younger patients. A sample of 5,005 death certificates was selected from all deaths in Flanders (Belgium) in the second half of 2001 (before euthanasia was legalized). Questionnaires were mailed to the certifying physicians. Response rate was 58.9%. An ELD was made for 53.6% very old (aged 80+) patients who died nonsuddenly (vs. 63.3% for the younger patients). Use of life-ending drugs occurred among 1.1% (six times less frequently than in younger patients), with no euthanasia cases, pain and symptom alleviation with a possible life-shortening effect among 27.3% (two times less frequently), and withholding or withdrawing life-prolonging treatments among 25.2% (slightly more frequently). Terminal sedation occurred among 6.9% of the cases, two times less frequently than for the younger patients. ELDs were not often discussed with very old patients. Among competent patients this was less than compared with younger patients. ELDs are less common for very old than for younger patients. Physicians seem to have a more reluctant attitude towards the use of lethal drugs, terminal sedation and participation in decision-making when dealing with very old patients. Advance care planning should increase the involvement of very old competent and noncompetent patients in end-of-life decision-making. (c) 2008 S. Karger AG, Basel.
ERIC Educational Resources Information Center
Liu, Wendy; Aaker, Jennifer
2007-01-01
In this research, we investigate the impact of significant life experiences on intertemporal decisions among young adults. A series of experiments focus specifically on the impact of experiencing the death of a close other by cancer. We show that such an experience, which bears information about time, is associated with making decisions that favor…
ERIC Educational Resources Information Center
Waldrop, Deborah
2014-01-01
Decisions about treatment and options for care at the end stage of an advanced chronic illness are important determinants of the quality of a person's death and of how family members adapt in bereavement. This article describes the steps taken to secure federal funding to study how people make the decision to enroll in hospice. The National…
How Does the Brain Implement Adaptive Decision Making to Eat?
Walsh, B. Timothy; Kaye, Walter; Geliebter, Allan
2015-01-01
Adaptive decision making to eat is crucial for survival, but in anorexia nervosa, the brain persistently supports reduced food intake despite a growing need for energy. How the brain persists in reducing food intake, sometimes even to the point of death and despite the evolution of multiple mechanisms to ensure survival by governing adaptive eating behaviors, remains mysterious. Neural substrates belong to the reward-habit system, which could differ among the eating disorders. The present review provides an overview of neural circuitry of restrictive food choice, binge eating, and the contribution of specific serotonin receptors. One possibility is that restrictive food intake critically engages goal-directed (decision making) systems and “habit,” supporting the view that persistent caloric restriction mimics some aspects of addiction to drugs of abuse. SIGNIFICANCE STATEMENT An improved understanding of the neural basis of eating disorders is a timely challenge because these disorders can be deadly. Up to 70 million of people in the world suffer from eating disorders. Anorexia nervosa affects 1–4% of women in United States and is the first cause of death among adolescents in Europe. Studies relying on animal models suggest that decision making to eat (or not) can prevail over actual energy requirements due to emotional disturbances resulting in abnormal habitual behavior, mimicking dependence. These recent studies provide a foundation for developing more specific and effective interventions for these disorders. PMID:26468187
Hemorrhage Detection and Segmentation in Traumatic Pelvic Injuries
Davuluri, Pavani; Wu, Jie; Tang, Yang; Cockrell, Charles H.; Ward, Kevin R.; Najarian, Kayvan; Hargraves, Rosalyn H.
2012-01-01
Automated hemorrhage detection and segmentation in traumatic pelvic injuries is vital for fast and accurate treatment decision making. Hemorrhage is the main cause of deaths in patients within first 24 hours after the injury. It is very time consuming for physicians to analyze all Computed Tomography (CT) images manually. As time is crucial in emergence medicine, analyzing medical images manually delays the decision-making process. Automated hemorrhage detection and segmentation can significantly help physicians to analyze these images and make fast and accurate decisions. Hemorrhage segmentation is a crucial step in the accurate diagnosis and treatment decision-making process. This paper presents a novel rule-based hemorrhage segmentation technique that utilizes pelvic anatomical information to segment hemorrhage accurately. An evaluation measure is used to quantify the accuracy of hemorrhage segmentation. The results show that the proposed method is able to segment hemorrhage very well, and the results are promising. PMID:22919433
Lambert, Heather C; McColl, Mary Ann; Gilbert, Julie; Wong, Jiahui; Murray, Gale; Shortt, Samuel E D
2005-10-01
The purpose of this study was to describe factors contributing to the decision-making processes of elderly persons as they formulate advance directives in long-term care. This study was qualitative, based on grounded theory. Recruitment was purposive and continued until saturation was reached. Nine residents of a long-term-care facility were interviewed by use of a semistructured format. Open and axial coding of interview transcripts were carried out and the factors contributing to the decision process were defined. Elders based their decisions primarily on information gathered from personal experiences with death and illness. They obtained very little information from professionals or the media. Major factors considered by elders as they weighed information included spiritual, emotional, and social considerations. The factors considered during the decision-making process were oriented more toward the individual's experiences and less on contributions from objective sources than anticipated. Decision making for advance directives is a highly personalized process. The approach of health professionals when assisting with end-of-life decision making should be planned with these contributing factors in mind, so that the services offered to the individuals in this population best meet their needs.
Using Drugs to End Life without an Explicit Request of the Patient
ERIC Educational Resources Information Center
Rietjens, Judith A.C.; Bilsen, Johan; Fischer, Susanne; van der Heide, Agnes; van der Maas, Paul J.; Miccinessi, Guido; Norup, Michael; Onwuteaka-Philipsen, Bregje D.; Vrakking, Astrid M.; van der Wal, Gerrit.
2007-01-01
A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their…
Who Foregoes Survivor Protection in Employer-Sponsored Pension Annuities? (Brief Article)
ERIC Educational Resources Information Center
Johnson, Richard W.; Uccello, Cori E.; Goldwyn, Joshua H.
2005-01-01
Purpose: Retirees in traditional pension plans must generally choose between single life annuities, which provide regular payments until death, and joint and survivor annuities, which pay less each month but continue to make payments to the spouse after the death of the retired worker. This article examines the payout decision and measures the…
Martins Pereira, Sandra; Fradique, Emília; Hernández-Marrero, Pablo
2018-05-01
End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. Qualitative secondary analysis. Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.
Cultural differences in end-of-life care.
Vincent, J L
2001-02-01
The exact time of death for many intensive care unit patients is increasingly preceded by an end-of-life decision. Such decisions are fraught with ethical, religious, moral, cultural, and legal difficulties. Key questions surrounding this issue include the difference between withholding and withdrawing, when to withhold/withdraw, who should be involved in the decision-making process, what are the relevant legal precedents, etc. Cultural variations in attitude to such issues are perhaps expected between continents, but key differences also exist on a more local basis, for example, among the countries of Europe. Physicians need to be aware of the potential cultural differences in the attitudes not only of their colleagues, but also of their patients and families. Open discussion of these issues and some change in our attitude toward life and death are needed to enable such patients to have a pain-free, dignified death.
Cremer, R; Binoche, A; Noizet, O; Fourier, C; Leteurtre, S; Moutel, G; Leclerc, F
2007-01-01
Objective To evaluate feasibility of the guidelines of the Groupe Francophone de Réanimation et Urgence Pédiatriques (French‐speaking group of paediatric intensive and emergency care; GFRUP) for limitation of treatments in the paediatric intensive care unit (PICU). Design A 2‐year prospective survey. Setting A 12‐bed PICU at the Hôpital Jeanne de Flandre, Lille, France. Patients Were included when limitation of treatments was expected. Results Of 967 children admitted, 55 were included with a 2‐day median delay. They were younger than others (24 v 60 months), had a higher paediatric risk of mortality (PRISM) score (14 v 4), and a higher paediatric overall performance category (POPC) score at admission (2 v 1); all p<0.002. 34 (50% of total deaths) children died. A limitation decision was made without meeting for 7 children who died: 6 received do‐not‐resuscitate orders (DNROs) and 1 received withholding decision. Decision‐making meetings were organised for 31 children, and the following decisions were made: 12 DNROs (6 deaths and 6 survivals), 4 withholding (1 death and 3 survivals), with 14 withdrawing (14 deaths) and 1 continuing treatment (survival). After limitation, 21 (31% of total deaths) children died and 10 survived (POPC score 4). 13 procedures were interrupted because of death and 11 because of clinical improvement (POPC score 4). Parents' opinions were obtained after 4 family conferences (for a total of 110 min), 3 days after inclusion. The first meeting was planned for 6 days after inclusion and held on the 7th day after inclusion; 80% of parents were immediately informed of the decision, which was implemented after half a day. Conclusions GFRUPs procedure was applicable in most cases. The main difficulties were anticipating the correct date for the meeting and involving nurses in the procedure. Children for whom the procedure was interrupted because of clinical improvement and who survived in poor condition without a formal decision pointed out the need for medical criteria for questioning, which should systematically lead to a formal decision‐making process. PMID:17329379
How modifiable factors influence parental decision-making about organ donation.
Luberda, Kamila; Cleaver, Karen
2017-11-07
A global shortage of organs from children and adults available for transplantation is compounded by the failure of next of kin to consent for organs to be donated after death. Non-modifiable and modifiable factors influence decision-making in this area. Modifiable factors are of interest when examining families' decision-making about the donation of organs from their deceased child. A scoping review was undertaken to determine how modifiable factors influence parental decision-making about organ donation. Thematic analysis identified two themes: interactions with healthcare professionals and pre-disposition to organ donation. Satisfaction with experiences of hospital care, the information provided and the way it was communicated, as well as interactions pertaining to emotional support were all found to be modifiable factors that influenced decision making. Likewise, a predisposition to organ donation and knowing the deceased's wishes were associated with the consent decision. Nurses working in critical care environments need to be able to support parents during this difficult time. This article aims to raise awareness of modifiable factors that influence parental decision-making, highlighting their relevance for children's nursing practice. ©2017 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.
Recovery After Stroke: Coping with Emotions
... gain Being unable to concentrate, remember or make decisions like you used to Feeling worthless or helpless Feelings of guilt Ongoing thoughts of death or suicide, suicide planning ...
Onakpoya, Igho J; Heneghan, Carl J; Aronson, Jeffrey K
2017-05-01
Several medicinal products have been withdrawn from the market because of drug-attributed deaths. However, there has been no investigation of whether such withdrawals were justified, and the extent to which confirmatory studies are used to investigate drug-adverse event relationships when deaths are reported is uncertain. We documented medicinal products withdrawn from the market because of drug-attributed deaths, identified confirmatory studies investigating the drug-adverse event relationships, examined whether withdrawals of medicinal products because of drug-attributed deaths after marketing were justified based on a mechanistic analysis, and examined the trends over time. We searched electronic and non-electronic sources to identify medicinal products that were withdrawn because of drug-attributed deaths. We used a previously published algorithm to examine whether the withdrawals of products were justified. We then searched PubMed and Google Scholar to identify studies investigating the drug-adverse event relationships, used the Oxford Centre for Evidence-Based Medicine criteria to document the levels of evidence, and assessed whether the evidence of an association was confirmed. We included 83 medicinal products. The reasons for withdrawal appeared to have been justified in 80 cases (96%). The median interval between the first reported adverse reaction that was related to the cause of death and the first reported death was 1 year (interquartile range = 1-3); products were withdrawn sooner when the interval between the first reported relevant adverse reaction and the first death was shorter. Confirmatory studies were conducted in 57 instances (69%), and there was evidence of an association in 52 cases (63%). Four products (5%) were re-introduced after initial withdrawal. Regulatory authorities have been justified in making withdrawal decisions when deaths have been attributed to medicinal products, using the precautionary principle when alternative decisions could have been made. Medicinal products are likely to be quickly withdrawn from the market when there is a short interval to the first reported deaths. The use of an algorithm such as we have used in this study could help to expedite the process of decision making.
Socioeconomic inequity in survival for deliveries at 22-24 weeks of gestation.
Morisaki, Naho; Isayama, Tetsuya; Samura, Osamu; Wada, Kazuko; Kusuda, Satoshi
2018-05-01
Guidelines recommend individual decision making on resuscitating infants of 22-24 weeks' gestational age (GA) at birth. When the decision not to resuscitate is made, infants would likely die soon after delivery, and under some circumstances such neonatal deaths may be registered as stillbirths occurring during delivery (intrapartum stillbirth). Thus we assessed whether socioeconomic factors are associated with peridelivery deaths (during or within 1 hour of delivery) of infants delivered at 22-24 weeks' gestation. We analysed 14 726 singletons of 22-24 weeks' GA using the 2003-2011 Japanese vital statistics, and assessed how maternal characteristics influence risk of peridelivery death as well as intrauterine fetal death (IUFD) and death after 1 hour of age until 40 weeks postmenstrual age. Living in a municipality with low-average income (lowest tertile (risk ratio 1.32, 95% CI 1.20 to 1.44), middle tertile (risk ratio 1.08, 95% CI 0.98 to 1.19)), younger maternal age (age <20 (risk ratio 1.43, 95% CI 1.17 to 1.75), age 20-34 (risk ratio 1.14, 95% CI 1.03 to 1.27)) and having previous live births (risk ratio 1.08, 95% CI 1.01 to 1.17) increased risk of peridelivery deaths, but did not increase risk of IUFD or deaths after 1 hour of age. Peridelivery death was twice as likely to occur in births to multiparous teenage mothers in a low-income municipality, compared with those of older primiparous mothers in a wealthier municipality. Socioeconomic factors substantially influence whether births of 22-24 weeks' GA survive delivery and the first hour of life. Such disparities may reflect the impact of socioeconomic situations on decision making for resuscitation. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
2013-01-01
Background Patients, identified to be at risk for but who have never experienced a potentially lethal cardiac arrhythmia, have the option of receiving an implantable cardioverter defibrillator (ICD) as prophylaxis against sudden cardiac death - a primary prevention indication. In Canada, there is no clear framework to support patients’ decision-making for these devices. Decision support, using a decision aid, could moderate treatment-related uncertainty and prepare patients to make well-informed decisions. Patient decision aids provide information on treatment options, risks, and benefits, to help patients clarify their values for outcomes of treatment options. The objectives of this research are: 1) develop a decision aid, 2) evaluate the decision aid, and 3) determine the feasibility of conducting a trial. Methods/design A development panel comprised of the core investigative team, health service researchers, decision science experts, cardiovascular healthcare practitioners, and ICD patient representatives will collaborate to provide input on the content and format of the aid. To generate probabilities to include in the aid, we will synthesize primary prevention ICD evidence. To obtain anonymous input about the facts and content, we will employ a modified Delphi process. To evaluate the draft decision aid will invite ICD patients and their families (n = 30) to rate its acceptability. After we evaluate the aid, to determine the feasibility, we will conduct a feasibility pilot randomized controlled trial (RCT) in new ICD candidates (n = 80). Participants will be randomized to receive a decision aid prior to specialist consultation versus usual care. Results from the pilot RCT will determine the feasibility of research processes; inform sample size calculation, measure decision quality (knowledge, values, decision conflict) and the influence of health related quality of life on decision-making. Discussion Our study seeks to develop a decision aid, for patients offered their first ICD for prophylaxis against sudden cardiac death. This paper outlines the background and methods of a pilot randomized trial which will inform a larger multicenter trial. Ultimately, decision support prior to specialist consultation could enhance the decision-making process between patients, physicians, and families, associated with life-prolonging medical devices like the ICD. Trial registration ClinicalTrials.gov: NCT01876173 PMID:24148851
Carroll, Sandra L; McGillion, Michael; Stacey, Dawn; Healey, Jeff S; Browne, Gina; Arthur, Heather M; Thabane, Lehana
2013-10-22
Patients, identified to be at risk for but who have never experienced a potentially lethal cardiac arrhythmia, have the option of receiving an implantable cardioverter defibrillator (ICD) as prophylaxis against sudden cardiac death - a primary prevention indication. In Canada, there is no clear framework to support patients' decision-making for these devices. Decision support, using a decision aid, could moderate treatment-related uncertainty and prepare patients to make well-informed decisions. Patient decision aids provide information on treatment options, risks, and benefits, to help patients clarify their values for outcomes of treatment options. The objectives of this research are: 1) develop a decision aid, 2) evaluate the decision aid, and 3) determine the feasibility of conducting a trial. A development panel comprised of the core investigative team, health service researchers, decision science experts, cardiovascular healthcare practitioners, and ICD patient representatives will collaborate to provide input on the content and format of the aid. To generate probabilities to include in the aid, we will synthesize primary prevention ICD evidence. To obtain anonymous input about the facts and content, we will employ a modified Delphi process. To evaluate the draft decision aid will invite ICD patients and their families (n = 30) to rate its acceptability. After we evaluate the aid, to determine the feasibility, we will conduct a feasibility pilot randomized controlled trial (RCT) in new ICD candidates (n = 80). Participants will be randomized to receive a decision aid prior to specialist consultation versus usual care. Results from the pilot RCT will determine the feasibility of research processes; inform sample size calculation, measure decision quality (knowledge, values, decision conflict) and the influence of health related quality of life on decision-making. Our study seeks to develop a decision aid, for patients offered their first ICD for prophylaxis against sudden cardiac death. This paper outlines the background and methods of a pilot randomized trial which will inform a larger multicenter trial. Ultimately, decision support prior to specialist consultation could enhance the decision-making process between patients, physicians, and families, associated with life-prolonging medical devices like the ICD. ClinicalTrials.gov: NCT01876173.
ERIC Educational Resources Information Center
Steinberg, Laurence; Scott, Elizabeth S.
2003-01-01
The authors use a developmental perspective to examine questions about the criminal culpability of juveniles and the juvenile death penalty. Under principles of criminal law, culpability is mitigated when the actor's decision-making capacity is diminished, when the criminal act was coerced, or when the act was out of character. The authors argue…
Visvanathan, Akila; Dennis, Martin; Mead, Gillian; Whiteley, William N; Lawton, Julia; Doubal, Fergus Neil
2017-12-01
People who are well may regard survival with disability as being worse than death. However, this is often not the case when those surviving with disability (e.g. stroke survivors) are asked the same question. Many routine treatments provided after an acute stroke (e.g. feeding via a tube) increase survival, but with disability. Therefore, clinicians need to support patients and families in making informed decisions about the use of these treatments, in a process termed shared decision making. This is challenging after acute stroke: there is prognostic uncertainty, patients are often too unwell to participate in decision making, and proxies may not know the patients' expressed wishes (i.e. values). Patients' values also change over time and in different situations. There is limited evidence on successful methods to facilitate this process. Changes targeted at components of shared decision making (e.g. decision aids to provide information and discussing patient values) increase patient satisfaction. How this influences decision making is unclear. Presumably, a "shared decision-making tool" that introduces effective changes at various stages in this process might be helpful after acute stroke. For example, by complementing professional judgement with predictions from prognostic models, clinicians could provide information that is more accurate. Decision aids that are personalized may be helpful. Further qualitative research can provide clinicians with a better understanding of patient values and factors influencing this at different time points after a stroke. The evaluation of this tool in its success to achieve outcomes consistent with patients' values may require more than one clinical trial.
Steinberg, Laurence; Scott, Elizabeth S
2003-12-01
The authors use a developmental perspective to examine questions about the criminal culpability of juveniles and the juvenile death penalty. Under principles of criminal law, culpability is mitigated when the actor's decision-making capacity is diminished, when the criminal act was coerced, or when the act was out of character. The authors argue that juveniles should not be held to the same standards of criminal responsibility as adults, because adolescents' decision-making capacity is diminished, they are less able to resist coercive influence, and their character is still undergoing change. The uniqueness of immaturity as a mitigating condition argues for a commitment to a legal environment under which most youths are dealt with in a separate justice system and none are eligible for capital punishment. ((c) 2003 APA, all rights reserved)
Lin, Yanxia; Myall, Michelle; Jarrett, Nikki
2017-12-01
To understand how decisions are made to transfer dying patients home from critical care units. Many people prefer a home death, but a high proportion die in critical care units. Transferring dying patients home is recognized to be complex but transfer decision-making itself remains unclear. Integrative review. Seven bibliographic databases (origin-2015), grey literature and reference lists were searched. An integrative review method was used to synthesize data from diverse sources. Papers were selected through title and abstract screening and full-text reviewing, using inclusion and exclusion criteria derived from review questions. Following quality appraisal, data were extracted and synthesized using normalization process theory as a framework. The number of patients transferred home ranged from 1-346, with most papers reporting on the transfer of one or two patients. Four themes regarding transfer decision-making work were generated: divergent views and practice, multiple stakeholders' involvement in decision-making, collective work and limited understanding of individuals' experiences. The practice of transferring patients home to die and its decision-making varies internationally and is usually influenced by the care system, culture or religion. It is less common to transfer patients home to die from critical care units in western societies. A better understanding of the decision-making work was obtained but mainly from the perspective of hospital-based healthcare professionals. Further research is needed to develop decision-making practice guidance to facilitate patients' wishes to die at home. © 2017 John Wiley & Sons Ltd.
Death Penalty Decisions: Instruction Comprehension, Attitudes, and Decision Mediators.
Patry, Marc W; Penrod, Steven D
2013-01-01
A primary goal of this research was to empirically evaluate a set of assumptions, advanced in the Supreme Court's ruling in Buchanan v. Angelone (1998), about jury comprehension of death penalty instructions. Further, this research examined the use of evidence in capital punishment decision making by exploring underlying mediating factors upon which death penalty decisions may be based. Manipulated variables included the type of instructions and several variations of evidence. Study 1 was a paper and pencil study of 245 undergraduate mock jurors. The experimental design was an incomplete 4×2×2×2×2 factorial model resulting in 56 possible conditions. Manipulations included four different types of instructions, presence of a list of case-specific mitigators to accompany the instructions, and three variations in the case facts: age of the defendant, bad prior record, and defendant history of emotional abuse. Study 2 was a fully-crossed 2×2×2×2×2 experiment with four deliberating mock juries per cell. Manipulations included jury instructions (original or revised), presence of a list of case-specific mitigators, defendant history of emotional abuse, bad prior record, and heinousness of the crime. The sample of 735 jury-eligible participants included 130 individuals who identified themselves as students. Participants watched one of 32 stimulus videotapes based on a replication of a capital sentencing hearing. The present findings support previous research showing low comprehension of capital penalty instructions. Further, we found that higher instruction comprehension was associated with higher likelihood of issuing life sentence decisions. The importance of instruction comprehension is emphasized in a social cognitive model of jury decision making at the sentencing phase of capital cases.
Death Penalty Decisions: Instruction Comprehension, Attitudes, and Decision Mediators
Patry, Marc W.; Penrod, Steven D.
2013-01-01
A primary goal of this research was to empirically evaluate a set of assumptions, advanced in the Supreme Court’s ruling in Buchanan v. Angelone (1998), about jury comprehension of death penalty instructions. Further, this research examined the use of evidence in capital punishment decision making by exploring underlying mediating factors upon which death penalty decisions may be based. Manipulated variables included the type of instructions and several variations of evidence. Study 1 was a paper and pencil study of 245 undergraduate mock jurors. The experimental design was an incomplete 4×2×2×2×2 factorial model resulting in 56 possible conditions. Manipulations included four different types of instructions, presence of a list of case-specific mitigators to accompany the instructions, and three variations in the case facts: age of the defendant, bad prior record, and defendant history of emotional abuse. Study 2 was a fully-crossed 2×2×2×2×2 experiment with four deliberating mock juries per cell. Manipulations included jury instructions (original or revised), presence of a list of case-specific mitigators, defendant history of emotional abuse, bad prior record, and heinousness of the crime. The sample of 735 jury-eligible participants included 130 individuals who identified themselves as students. Participants watched one of 32 stimulus videotapes based on a replication of a capital sentencing hearing. The present findings support previous research showing low comprehension of capital penalty instructions. Further, we found that higher instruction comprehension was associated with higher likelihood of issuing life sentence decisions. The importance of instruction comprehension is emphasized in a social cognitive model of jury decision making at the sentencing phase of capital cases. PMID:24072981
Dying cancer patients talk about physician and patient roles in DNR decision making.
Eliott, Jaklin A; Olver, Ian
2011-06-01
Within medical and bioethical discourse, there are many models depicting the relationships between, and roles of, physician and patient in medical decision making. Contestation similarly exists over the roles of physician and patient with regard to the decision not to provide cardiopulmonary resuscitation (CPR) following cardiac arrest [the do-not-resuscitate or do-not-resuscitate (DNR) decision], but there is little analysis of patient perspectives. Analyse what patients with cancer within weeks before dying say about the decision to forego CPR and the roles of patient and physician in this decision. Discursive analysis of qualitative data gathered during semi-structured interviews with 28 adult cancer patients close to death and attending palliative or oncology clinics of an Australian teaching hospital. Participants' descriptions of appropriate patient or physician roles in decisions about CPR appeared related to how they conceptualized the decision: as a personal or a medical issue, with patient and doctor respectively identified as appropriate decision makers; or alternatively, both medical and personal, with various roles assigned embodying different versions of a shared decision-making process. Participants' endorsement of physicians as decision makers rested upon physicians' enactment of the rational, knowledgeable and compassionate expert, which legitimized entrusting them to make the DNR decision. Where this was called into question, physicians were positioned as inappropriate decision makers. When patients' and physicians' understandings of the best decision, or of the preferred role of either party, diverge, conflict may ensue. In order to elicit and negotiate with patient preferences, flexibility is required during clinical interactions about decision making. © 2010 Blackwell Publishing Ltd.
Opening Life's Gifts: Facing Death for a Second Time.
Hold, Judith L; Blake, Barbara J; Byrne, Michelle; Varga, Michael
Prior to the development of effective antiretroviral therapy, persons diagnosed with HIV thought they were going to die. Now, long-term survivors are contemplating death again as they age and develop other chronic diseases. The purpose of our study was to understand the experiences of adults living with HIV for 20 or more years as they faced death for a second time. Hermeneutic phenomenology guided the research as participants shared their lived experience through storytelling. Each person's story was audiotaped and transcribed verbatim. Transcript analysis occurred as data were collected. Three common themes from the narratives were identified: Making Choices, Transformation of Fear, and Meaning of Death. Positive and negative pathways influenced each participants' decision-making. Over time, fear of dying was transformed and energy was directed toward living. Even though the participants in this study were facing death again, they recognized it as a natural part of life. Published by Elsevier Inc.
Dying cancer patients talk about physician and patient roles in DNR decision making
Eliott, Jaklin A.; Olver, Ian
2011-01-01
Abstract Background Within medical and bioethical discourse, there are many models depicting the relationships between, and roles of, physician and patient in medical decision making. Contestation similarly exists over the roles of physician and patient with regard to the decision not to provide cardiopulmonary resuscitation (CPR) following cardiac arrest [the do‐not‐resuscitate or do‐not‐resuscitate (DNR) decision], but there is little analysis of patient perspectives. Objective Analyse what patients with cancer within weeks before dying say about the decision to forego CPR and the roles of patient and physician in this decision. Design and participants Discursive analysis of qualitative data gathered during semi‐structured interviews with 28 adult cancer patients close to death and attending palliative or oncology clinics of an Australian teaching hospital. Results Participants’ descriptions of appropriate patient or physician roles in decisions about CPR appeared related to how they conceptualized the decision: as a personal or a medical issue, with patient and doctor respectively identified as appropriate decision makers; or alternatively, both medical and personal, with various roles assigned embodying different versions of a shared decision‐making process. Participants’ endorsement of physicians as decision makers rested upon physicians’ enactment of the rational, knowledgeable and compassionate expert, which legitimized entrusting them to make the DNR decision. Where this was called into question, physicians were positioned as inappropriate decision makers. Conclusion When patients’ and physicians’ understandings of the best decision, or of the preferred role of either party, diverge, conflict may ensue. In order to elicit and negotiate with patient preferences, flexibility is required during clinical interactions about decision making. PMID:20860782
Toward a coherent account of pediatric decision making.
Iltis, Ana S
2010-10-01
Within and among societies, there are competing understandings of the status of children, including debates over whether they can bear rights and, if so, which rights they bear and against whom, and their capacity to make decisions and be held responsible and accountable for actions. There also are different understandings of what constitutes a family; what authority parents have over and regarding their children; and what should happen to children who are without parents because of death, desertion, or imprisonment. These and other related debates reflect deep differences in worldviews, in how one understands the legitimate role of the state, in how one comes to know the proper way to raise children, and so on. The United Nations Convention on the Rights of the Child purports to reflect international convergence on the rights of children, on how decisions concerning children should be made, and on how children ought to be treated by the state and by their parents. This paper examines whether the Convention's framework for decision making concerning children is an appropriate framework for pediatric bioethics. Questions about how to make health care decisions for children ultimately are questions of who is in authority to make and judge such decisions. Establishing who is in authority, determining whether there are any limits to that authority and, if so, defining those limits should be the focus of efforts to develop and implement a pediatric decision-making framework.
Brinchmann, B S
2000-03-01
In this article, the vitality of premature infants will be described and discussed. Vitality was one of the main factors in a grounded theory study in which the aim was to generate knowledge concerning the ethical decision-making processes with which nurses and physicians are faced in a neonatal unit. Which assessments underlie decisions about whether to start, continue or stop medical treatment of very sick premature babies? A descriptive study design, including 120 hours of field observations and 22 qualitative in-depth interviews with doctors and nurses, was chosen. Strauss and Glaser's comparative method was used to analyse the field observations and interviews. The findings indicate that life-and-death decisions are somewhat ambivalent; experience does not always make them easier. In situations of ambiguity, decisions also seem to be based upon the vitality of the babies concerned.
Stroope, Samuel
2015-09-01
Research on the social determinants of health in developing countries is increasingly focusing on the importance of gender. Cardiovascular conditions such as hypertension are a growing concern in developing countries, where they are now the leading cause of death. Researchers have documented differences in hypertension between men and women, but the importance of gendered practices in shaping these differences has been left unexamined. Using national data from the India Human Development Survey 2005 (N=101,593), this study assesses the moderating role of two salient and widespread gendered practices-women's seclusion and decision-making power-on hypertension disparities between women and men. Both seclusion and low decision-making power are associated with increased odds of hypertension for women, but in the case of seclusion reduced hypertension for men. Results also show the gender gap in hypertension is exacerbated with women's seclusion and low decision-making power. Copyright © 2015 Elsevier Inc. All rights reserved.
Brooks, S A
1985-06-01
Some form of utilitarian approach can be discerned as underlying much current medical ethical decision-making. Criticisms of the practical effects of such an approach are not parried by asserting the fundamental strengths of utilitarianism as theory.
Trends in Continuous Deep Sedation until Death between 2007 and 2013: A Repeated Nationwide Survey
Cohen, Joachim; Rietjens, Judith
2016-01-01
Background Continuous deep sedation until death is a highly debated medical practice, particularly regarding its potential to hasten death and its proper use in end-of-life care. A thorough analysis of important trends in this practice is needed to identify potentially problematic developments. This study aims to examine trends in the prevalence and practice characteristics of continuous deep sedation until death in Flanders, Belgium between 2007 and 2013, and to study variation on physicians’ degree of palliative training. Methods Population-based death certificate study in 2007 and 2013 in Flanders, Belgium. Reporting physicians received questionnaires about medical practices preceding the patient’s death. Patient characteristics, clinical characteristics (drugs used, duration, artificial nutrition/hydration, intention and consent), and palliative care training of attending physician were recorded. We posed the following question regarding continuous deep sedation: ‘Was the patient continuously and deeply sedated or kept in a coma until death by the use of one or more drugs’. Results After the initial rise of continuous deep sedation to 14.5% in 2007 (95%CI 13.1%-15.9%), its use decreased to 12.0% in 2013 (95%CI 10.9%-13.2%). Compared with 2007, in 2013 opioids were less often used as sole drug and the decision to use continuous deep sedation was more often preceded by patient request. Compared to non-experts, palliative care experts more often used benzodiazepines and less often opioids, withheld artificial nutrition/hydration more often and performed sedation more often after a request from or with the consent of the patient or family. Conclusion Worldwide, this study is the first to show a decrease in the prevalence of continuous deep sedation. Despite positive changes in performance and decision-making towards more compliance with due care requirements, there is still room for improvement in the use of recommended drugs and in the involvement of patients and relatives in the decision-making process. PMID:27337064
Turner-Stokes, Lynne
2017-07-01
Best interests decision-making and end-of-life care for patients in permanent vegetative or minimally conscious states (VS/MCS) is a complex area of clinical and legal practice, which is poorly understood by most clinicians, lawyers and members of the public. In recent weeks, the Oxford Shrieval lecture by Mr Justice Baker ('A Matter of Life and Death', 11 October 2016) and its subsequent reporting in the public press has sparked debate on the respective roles of clinicians, the Court of Protection and the Mental Capacity Act 2005 in decisions to withhold or withdraw life-sustaining treatments from patients with disorders of consciousness. The debate became polarised and confused by misquotation and inaccurate terminology, and highlighted a lack of knowledge about how patients in VS/MCS die in the absence of court approval. This article sets out the background and discussion and attempts to give a more accurate representation of the facts. In the spirit of transparency, I present a mortality review of all the patients in VS/MCS who have died under the care of my own unit in the last decade-with or without referral to the court, but always in accordance with the law. These data demonstrate that clinicians regularly undertake best interests decision-making in conjunction with families that may include life and death decisions (sometimes even the withdrawal or withholding of clinically assisted nutrition and hydration); and that these can be made within the current legal framework without necessarily involving the court in all cases. This is the first published case series of its kind. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Hope, Life, and Death: A Qualitative Analysis of Dying Cancer Patients' Talk about Hope
ERIC Educational Resources Information Center
Eliott, Jaklin A.; Olver, Ian N.
2009-01-01
Although deemed vital to patient well-being, hope in persons who are terminally ill is often thought to be problematic, particularly when centered on cure. As part of a study on end-of-life decision-making, we asked 28 patients with cancer, believed to be within weeks of their death, to talk about hope. Responses were transcribed and discursively…
[Each person has to make their own individual decision - arguments for physician assisted suicide].
Posa, Andreas
2016-06-01
Since November 2015, businesslike assisted suicide is punishable in Germany. But who acts businesslike? The majority of the German population prefers to make own decisions about the circumstances of their arriving death, and many of them would also accept (physician) assisted suicide if necessary. Only a minority of physicians plead for prohibiting assisted suicide in general. In the end everyone should be able to take position on his own. No one is obliged to use or execute assisted suicide. © Georg Thieme Verlag KG Stuttgart · New York.
[Limits of intensive care--decision making on the way between life and death].
Uehlinger-Walter, J
1994-05-03
Survival and death are closely related in intensive-care medicine. Both have to be accepted and accounted for when decisions have to be made and activity is required. Only then a sound and truthful process of decision-making is guaranteed. Both, the experienced as well as the novice, need guidelines in this process. The basis of these guidelines lies in quite different aspects of life: juridical, philosophic-ethical and religious. The first part of this paper focuses on the specific setting of neonatal intensive care. Three issues must be considered: The patient is not the direct partner in conversation; illness and its consequences have an impact on the social network of the whole family; mothers quite often suffer from severe guilt feelings, which have to be understood and addressed. The second part describes the essential elements of support on the journey' between life and death. They can be summarized under seven headings: urgent acquisition of all necessary data; the need for medical intervention before optimal level of relevant information is available; the importance of allowing for human time factors; the process of arriving at certain decisions; the dealing with unexpected changes in the course and development of the disease; the cessation of therapy; the parental support in bereavement. The overall emphasis of medical intervention should be to view the patient as human being, not as a treatable subject amongst a setting of numerous medical intervention techniques.
2013-01-01
Background Substitute decision-makers are integral to the care of dying patients and make many healthcare decisions for patients. Unfortunately, conflict between physicians and surrogate decision-makers is not uncommon in end-of-life care and this could contribute to a “bad death” experience for the patient and family. We aim to describe Canadian family physicians’ experiences of conflict with substitute decision-makers of dying patients to identify factors that may facilitate or hinder the end-of-life decision-making process. This insight will help determine how to best manage these complex situations, ultimately improving the overall care of dying patients. Methods Grounded Theory methodology was used with semi-structured interviews of family physicians in Edmonton, Canada, who experienced conflict with substitute decision-makers of dying patients. Purposeful sampling included maximum variation and theoretical sampling strategies. Interviews were audio-taped, and transcribed verbatim. Transcripts, field notes and memos were coded using the constant-comparative method to identify key concepts until saturation was achieved and a theoretical framework emerged. Results Eleven family physicians with a range of 3 to 40 years in clinical practice participated. The family physicians expressed a desire to achieve a “good death” and described their role in positively influencing the experience of death. Finding Common Ground to Achieve a “Good Death” for the Patient emerged as an important process which includes 1) Building Mutual Trust and Rapport through identifying key players and delivering manageable amounts of information, 2) Understanding One Another through active listening and ultimately, and 3) Making Informed, Shared Decisions. Facilitators and barriers to achieving Common Ground were identified. Barriers were linked to conflict. The inability to resolve an overt conflict may lead to an impasse at any point. A process for Resolving an Impasse is described. Conclusions A novel framework for developing Common Ground to manage conflicts during end-of-life decision-making discussions may assist in achieving a “good death”. These results could aid in educating physicians, learners, and the public on how to achieve productive collaborative relationships during end-of-life decision-making for dying patients, and ultimately improve their deaths. PMID:23339822
Medical examiner/death investigator training requirements in state medical examiner systems.
Prahlow, J A; Lantz, P E
1995-01-01
Comprehensive and properly performed investigation of suspicious, unusual, unnatural, and various natural deaths is necessary to maintain the health, safety, and well-being of society as a whole. Adequate investigation requires the combined efforts and cooperation of law-enforcement and other public-service agencies, medical professionals, and those within the forensic community. As such, the "death investigator" plays a crucial role in the investigation process. These front-line investigators, whether they be coroners, medical examiners, physicians, other medical professionals, or lay-people, are required to make important decisions which have far-reaching consequences on how death investigation cases proceed. Death investigation practices vary greatly among medico-legal jurisdictions. A recent publication has categorized state death investigation systems by type of system. In an attempt to better delineate death investigation practices with specific regard to investigators' training and continuing education requirements, we surveyed the 20 systems categorized as state medical examiner systems and the five states with combined state medical examiner and county coroner/medical examiner systems. We present our findings and make recommendations which address the attributes and deficiencies of current death investigation practices.
Brooks, S A
1985-01-01
Some form of utilitarian approach can be discerned as underlying much current medical ethical decision-making. Criticisms of the practical effects of such an approach are not parried by asserting the fundamental strengths of utilitarianism as theory. PMID:4009639
Carroll, Sandra L.; Strachan, Patricia H.; de Laat, Sonya; Schwartz, Lisa; Arthur, Heather M.
2011-01-01
Abstract Background Patients are offered implantable defibrillators (ICDs) for the prevention of sudden cardiac death (SCD). However, patients’ decision‐making process (DMP) of whether or not to accept an ICD has not been explored. We asked patients about their decision making when offered an ICD. Design/Setting A grounded theory methodology was employed. Patients were recruited from three ICD centres. Those who received an ICD underwent interviews the first month after implant. Declining patients had interviews at their convenience. In‐depth analysis of transcripts was completed. Identified themes were placed along process pathways in a DMP model and tested. Findings Forty‐four patients consented to participate (25% women). Thirty‐four accepted an ICD and 10 (23%) declined. Ages ranged from 26 to 87 (mean = 65; SD = 12.5). Participants were retired (65%), had ischaemic heart disease (64%) and some post‐secondary education (52%). The DMP was triggered when patient’s risk for SCD was communicated. The physician’s recommendation and a new awareness SCD risk were motivators to accept the ICD. Patient’s decision‐making approaches fell along a continuum, from active and engaged to passive and indifferent. Patient’s approaches were influenced most by the following: (i) trust; (ii) social influences and (iii) health state. Conclusions Health‐care providers need to recognize the DMP pathways in which ICD candidacy and SCD risk are understood. The factors that influence a patient’s decision warrant discussion pre‐implant. It is imperative that patients comprehend the meaning of ICD candidacy to make an informed decision. Participants did not recall alternatives to receiving ICD therapy. PMID:21645190
Flemming, Kate; Murtagh, Fliss E.M.; Johnson, Miriam J.
2015-01-01
Background and objective To ensure that decisions to start and stop dialysis in ESRD are shared, the factors that affect patients and health care professionals in making such decisions must be understood. This systematic review sought to explore how and why different factors mediate the choices about dialysis treatment. Design, setting, participants, & measurements MEDLINE, Embase, CINAHL, and PsychINFO were searched for qualitative studies of factors that affect patients’ or health care professionals’ decisions to commence or withdraw from dialysis. A thematic synthesis was conducted. Results Of 494 articles screened, 12 studies (conducted from 1985 to 2014) were included. These involved 206 patients (most receiving hemodialysis) and 64 health care professionals (age ranges: patients, 26–93 years; professionals, 26–61 years). For commencing dialysis, patients based their choice on "gut instinct," as well as deliberating over the effect of treatment on quality of life and survival. How individuals coped with decision-making was influential: Some tried to take control of the problem of progressive renal failure, whereas others focused on controlling their emotions. Health care professionals weighed biomedical factors and were led by an instinct to prolong life. Both patients and health care professionals described feeling powerless. With regard to dialysis withdrawal, only after prolonged periods on dialysis were the realities of life on dialysis fully appreciated and past choices questioned. By this stage, however, patients were physically dependent on treatment. As was seen with commencing dialysis, individuals coped with treatment withdrawal in a problem- or emotion-controlling way. Families struggled to differentiate between choosing versus allowing death. Health care teams avoided and queried discussions regarding dialysis withdrawal. Patients, however, missed the dialogue they experienced during predialysis education. Conclusions Decision-making in ESRD is complex and dynamic and evolves over time and toward death. The factors at work are multifaceted and operate differently for patients and health professionals. More training and research on open communication and shared decision-making are needed. PMID:25943310
Withdrawing may be preferable to withholding
Vincent, Jean-Louis
2005-01-01
The majority of deaths on the intensive care unit now occur following a decision to limit life-sustaining therapy, and end-of-life decision making is an accepted and important part of modern intensive care medical practice. Such decisions can essentially take one of two forms: withdrawing – the removal of a therapy that has been started in an attempt to sustain life but is not, or is no longer, effective – and withholding – the decision not to make further therapeutic interventions. Despite wide agreement by Western ethicists that there is no ethical difference between these two approaches, these issues continue to generate considerable debate. In this article, I will provide arguments why, although the two actions are indeed ethically equivalent, withdrawing life-sustaining therapy may in fact be preferable to withholding. PMID:15987405
Somé, Donmozoun Télesphore; Sombié, Issiaka; Meda, Nicolas
2013-02-07
Delay in decision-making to use skilled care during pregnancy and childbirth is an important factor for maternal death in many developing countries. This paper examines how decisions for maternal care are made in two rural communities in Burkina Faso. Focus group discussions (FGDs) and individual interviews (IDIs)) were used to collect information with 30 women in Ouargaye and Diapaga medical districts. All interviews were tape recorded and analyzed using QSR Nvivo 2.0. Decision-making for use of obstetric care in the family follows the logic of the family's management. Husbands, brothers-in-law and parents-in-law make the decision about whether to use a health facility for antenatal care or for delivery. In general, decision-makers are those who can pay, including the woman herself. Payment of care is the responsibility of men, according to women interviewed, because of their social role and status. To increase use of health facilities in Ouargaye and Diapaga, the empowerment of women could be helpful as well as exemption of fees or cost sharing for care.
Decision making by relatives about brain death organ donation: an integrative review.
de Groot, Jack; Vernooij-Dassen, Myrra; Hoedemaekers, Cornelia; Hoitsma, Andries; Smeets, Wim; van Leeuwen, Evert
2012-06-27
Deciding about the organ donation of one's brain-dead beloved often occurs in an unexpected and delicate situation. We explored the decision making of the relatives of potential brain-dead donors, its evaluation, and the factors influencing decision making. We used the integrative review method. Our search included 10 databases. Inclusion criteria were presence of the donation request or the subsequent decision process. Three authors independently assessed the eligibility of identified articles. Content analysis of 70 included articles led to three themes: decision, evaluation, and support. We extracted results and recommendations concerning these three themes. The timing of the request and understandable information influence the decision. The relatives evaluate their decision differently: in case of refusal, approximately one third regret their decision, and in case of consent, approximately one tenth mention regret. The relatives are often ambivalent about their values (protection, altruism, and respect) and the deceased's wishes, not wanting additional suffering either for their beloved or for themselves. Support is mainly focused on increasing consent rates and less on satisfaction with the decision. Evaluation of decision making by the relatives of potential brain-dead donors reveals possibilities for improving the decision process. Special skills of the requester, attention to the circumstances, and unconditional support for the relatives might prevent the relatives' regret about refusal and unnecessary loss of organs. We hypothesize that support in exploring the relatives' values and the deceased's wishes can lead to stable decisions. This hypothesis deserves further investigation.
Schenker, Yael; Crowley-Matoka, Megan; Dohan, Daniel; Tiver, Greer A; Arnold, Robert M; White, Douglas B
2012-12-01
Although numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision making that have received little attention. To characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies. Qualitative interview study. Thirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one. We conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods. Surrogates experience significant emotional conflict between the desire to act in accordance with their loved one's values and 1) not wanting to feel responsible for a loved one's death, 2) a desire to pursue any chance of recovery, and 3) the need to preserve family well-being. Associated coping strategies included 1) recalling previous discussions with a loved one, 2) sharing decisions with family members, 3) delaying or deferring decision making, 4) spiritual/religious practices, and 5) story-telling. Surrogates' struggle to reconcile personal and family emotional needs with their loved ones' wishes, and utilize common coping strategies to combat intrapersonal tensions. These data suggest reasons surrogates may struggle to follow a strict substituted judgment standard. They also suggest ways clinicians may improve decision making, including attending to surrogates' emotions, facilitating family decision making, and eliciting potential emotional conflicts and spiritual needs.
Ethical considerations in the regulation of euthanasia and physician-assisted death in Canada.
Landry, Joshua T; Foreman, Thomas; Kekewich, Michael
2015-11-01
On February 6th 2015 the Supreme Court of Canada (SCC) released their decision on Carter v Canada (Attorney General) to uphold a judgment from a lower court which determined that the current prohibition in Canada on physician-assisted dying violated the s. 7 [Charter of Rights and Freedoms] rights of competent adults whose medical condition causes intolerable suffering. The purpose of this piece is to briefly examine current regulations from Oregon (USA), Belgium, and the Netherlands, in which physician-assisted death and/or euthanasia is currently permitted, as well as from the province of Quebec which recently passed Bill-52, "An Act Respecting End-of-Life Care." We present ethical considerations that would be pertinent in the development of policies and regulations across Canada in light of this SCC decision: patient and provider autonomy, determining a relevant decision-making standard for practice, and explicating challenges with the SCC criteria for assisted-death eligibility with special consideration to the provision of assisted-death, and review of assisted-death cases. [It is not the goal of this paper to address all questions related to the regulation and policy development of euthanasia and assisted death in Canada, but rather to stimulate and guide the conversations in these areas for policy makers, professional bodies, and regulators.]. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Revisiting the Decision of Death in Hurst v. Florida.
Cooke, Brian K; Ginory, Almari; Zedalis, Jennifer
2016-12-01
The United States Supreme Court has considered the question of whether a judge or a jury must make the findings necessary to support imposition of the death penalty in several notable cases, including Spaziano v. Florida (1984), Hildwin v. Florida (1989), and Ring v. Arizona (2002). In 2016, the U.S. Supreme Court revisited the subject in Hurst v. Florida Florida Statute § 921.141 allows the judge, after weighing aggravating and mitigating circumstances, to enter a sentence of life imprisonment or death. Before Hurst, Florida's bifurcated sentencing proceedings included an advisory sentence from jurors and a separate judicial hearing without juror involvement. In Hurst, the Court revisited the question of whether Florida's capital sentencing scheme violates the Sixth Amendment, which requires a jury, not a judge, to find each fact necessary to impose a sentence of death in light of Ring In an eight-to-one decision, the Court reversed the judgment of the Florida Supreme Court, holding that the Sixth Amendment requires a jury to find the aggravating factors necessary for imposing the death penalty. The role of Florida juries in capital sentencing proceedings was thereby elevated from advisory to determinative. We examine the Court's decision and offer commentary regarding this shift from judge to jury in the final imposition of the death penalty and the overall effect of this landmark case. © 2016 American Academy of Psychiatry and the Law.
Berger, T M; Steurer, M A; Bucher, H U; Fauchère, J C; Adams, M; Pfister, R E; Baumann-Hölzle, R; Bassler, D
2017-06-15
The aim of this research is to assess causes and circumstances of deaths in extremely low gestational age neonates (ELGANs) born in Switzerland over a 3-year period. Population-based, retrospective cohort study. All nine level III perinatal centres (neonatal intensive care units (NICUs) and affiliated obstetrical services) in Switzerland. ELGANs with a gestational age (GA) <28 weeks who died between 1 July 2012 and 30 June 2015. A total of 594 deaths were recorded with 280 (47%) stillbirths and 314 (53%) deaths after live birth. Of the latter, 185 (59%) occurred in the delivery room and 129 (41%) following admission to an NICU. Most liveborn infants dying in the delivery room had a GA ≤24 weeks and died following primary non-intervention. In contrast, NICU deaths occurred following unrestricted life support regardless of GA. End-of-life decision-making and redirection of care were based on medical futility and anticipated poor quality of life in 69% and 28% of patients, respectively. Most infants were extubated before death (87%). In Switzerland, most deaths among infants born at less than 24 weeks of gestation occurred in the delivery room. In contrast, most deaths of ELGANs with a GA ≥24 weeks were observed following unrestricted provisional intensive care, end-of-life decision-making and redirection of care in the NICU regardless of the degree of immaturity. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Depression and African Americans
... in daily life and can even lead to suicide. A common myth about depression is that it is “normal” for certain people ... making decisions Thoughts of death or suicide, or suicide attempts ... depression are with antidepressant medication, psychotherapy, or a combination ...
Patient perspectives on informed decision-making surrounding dialysis initiation
Song, Mi-Kyung; Lin, Feng-Chang; Gilet, Constance A.; Arnold, Robert M.; Bridgman, Jessica C.; Ward, Sandra E.
2013-01-01
Background Careful patient–clinician shared decision-making about dialysis initiation has been promoted, but few studies have addressed patient perspectives on the extent of information provided and how decisions to start dialysis are made. Methods Ninety-nine maintenance dialysis patients recruited from 15 outpatient dialysis centers in North Carolina completed semistructured interviews on information provision and communication about the initiation of dialysis. These data were examined with content analysis. In addition, informed decision-making (IDM) scores were created by summing patient responses (yes/no) to 10 questions about the decision-making. Results The mean IDM score was 4.4 (of 10; SD = 2.0); 67% scored 5 or lower. Age at the time of decision-making (r = −0.27, P = 0.006), years of education (r = 0.24, P = 0.02) and presence of a warning about progressing to end-stage kidney disease (t = 2.9, P = 0.005) were significantly associated with IDM scores. Nearly 70% said that the risks and burdens of dialysis were not mentioned at all, and only one patient recalled that the doctor offered the option of not starting dialysis. While a majority (67%) said that they felt they had no choice about starting dialysis (because the alternative would be death) or about dialysis modality, only 21.2% said that they had felt rushed to make a decision. About one-third of the patients perceived that the decision to start dialysis and modality was already made by the doctor. Conclusions A majority of patients felt unprepared and ill-informed about the initiation of dialysis. Improving the extent of IDM about dialysis may optimize patient preparation prior to starting treatment and their perceptions about the decision-making process. PMID:23901048
Communicating about resuscitation: problems and prospects.
Ventres, W B
1993-01-01
The Patient Self-Determination Act of 1991 implicitly encourages physicians to discuss advance directives and no-code orders with their patients. The medical literature to date, however, has done little to place resuscitative decision making in the context of how physicians, patients, and families communicate with one another. This paper investigates how interactions between involved parties affect the process and outcome of this decision making. Participant observation and open-ended interviews were conducted with patients, their families, resident physicians, and family medicine faculty members. This report describes three social and cultural issues that commonly influence and shape the process of do-not-resuscitate decision making: judging competency and capacity, dealing with uncertainty, and recognizing attitudes toward death. Improved understanding of the communicative process can facilitate the establishment of meaningful, therapeutic alliances between physicians, patients, and families at an influential juncture in the family life cycle.
Where Health and Death Intersect: Insights from a Terror Management Health Model
Arndt, Jamie; Goldenberg, Jamie L.
2017-01-01
This paper offers an integrative understanding of the intersection between “health” and “death” from the perspective of the terror management health model. After highlighting the potential for health-related situations to elicit concerns about mortality, we turn to the question, how do thoughts of death influence health decision-making? Across varied health domains, the answer depends on whether these cognitions are in conscious awareness or not. When mortality concerns are conscious, people engage in healthy intentions and behavior if efficacy and coping resources are present. In contrast, when contending with accessible but non-conscious thoughts of death, health relevant decisions are guided more by esteem implications of the behavior. Lastly, we present research suggesting how these processes can be leveraged to facilitate health promotion and reduce health risk PMID:28924332
Djulbegovic, Benjamin; Elqayam, Shira
2017-10-01
Given that more than 30% of healthcare costs are wasted on inappropriate care, suboptimal care is increasingly connected to the quality of medical decisions. It has been argued that personal decisions are the leading cause of death, and 80% of healthcare expenditures result from physicians' decisions. Therefore, improving healthcare necessitates improving medical decisions, ie, making decisions (more) rational. Drawing on writings from The Great Rationality Debate from the fields of philosophy, economics, and psychology, we identify core ingredients of rationality commonly encountered across various theoretical models. Rationality is typically classified under umbrella of normative (addressing the question how people "should" or "ought to" make their decisions) and descriptive theories of decision-making (which portray how people actually make their decisions). Normative theories of rational thought of relevance to medicine include epistemic theories that direct practice of evidence-based medicine and expected utility theory, which provides the basis for widely used clinical decision analyses. Descriptive theories of rationality of direct relevance to medical decision-making include bounded rationality, argumentative theory of reasoning, adaptive rationality, dual processing model of rationality, regret-based rationality, pragmatic/substantive rationality, and meta-rationality. For the first time, we provide a review of wide range of theories and models of rationality. We showed that what is "rational" behaviour under one rationality theory may be irrational under the other theory. We also showed that context is of paramount importance to rationality and that no one model of rationality can possibly fit all contexts. We suggest that in context-poor situations, such as policy decision-making, normative theories based on expected utility informed by best research evidence may provide the optimal approach to medical decision-making, whereas in the context-rich circumstances other types of rationality, informed by human cognitive architecture and driven by intuition and emotions such as the aim to minimize regret, may provide better solution to the problem at hand. The choice of theory under which we operate is important as it determines both policy and our individual decision-making. © 2017 The Authors Journal of Evaluation in Clinical Practice Published by John Wiley & Sons Ltd.
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.
Rapoport, Adam; Shaheed, Jenny; Newman, Christine; Rugg, Maria; Steele, Rose
2013-05-01
Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. All parents were satisfied with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option.
2012-01-01
Background A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the ‘slippery slope’ hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. Method We performed a post-mortem survey among physicians certifying a large representative sample (n = 6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. Results While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. Conclusion Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or among older people, as since the euthanasia law fewer LAWER cases were found. PMID:22708727
Chambaere, Kenneth; Rietjens, Judith A C; Smets, Tinne; Bilsen, Johan; Deschepper, Reginald; Pasman, H Roeline W; Deliens, Luc
2012-06-18
A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the 'slippery slope' hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. We performed a post-mortem survey among physicians certifying a large representative sample (n = 6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or among older people, as since the euthanasia law fewer LAWER cases were found.
Late stillbirth post mortem examination in New Zealand: Maternal decision-making.
Cronin, Robin S; Li, Minglan; Wise, Michelle; Bradford, Billie; Culling, Vicki; Zuccollo, Jane; Thompson, John M D; Mitchell, Edwin A; McCowan, Lesley M E
2018-03-05
For parents who experience stillbirth, knowing the cause of their baby's death is important. A post mortem examination is the gold standard investigation, but little is known about what may influence parents' decisions to accept or decline. We aimed to identify factors influencing maternal decision-making about post mortem examination after late stillbirth. In the New Zealand Multicentre Stillbirth Study, 169 women with singleton pregnancies, no known abnormality at recruitment, and late stillbirth (≥28weeks gestation), from seven health regions were interviewed within six weeks of birth. The purpose of this paper was to explore factors related to post mortem examination decision-making and the reasons for declining. We asked women if they would make the same decision again. Maternal decision to decline a post mortem (70/169, 41.4%) was more common among women of Māori (adjusted odds ratio (aOR) 4.99 95% confidence interval (CI) 1.70-14.64) and Pacific (aOR 3.94 95% CI 1.47-10.54) ethnicity compared to European, and parity two or more (aOR 2.95 95% CI 1.14-7.62) compared to primiparous. The main reason for declining was that women 'did not want baby to be cut'. Ten percent (7/70) who declined said they would not make this decision again. No woman who consented regretted her decision. Ethnic differences observed in women's post mortem decision-making should be further explored in future studies. Providing information of the effect of post mortem on the baby's body and the possible emotional benefits of a post mortem may assist women faced with this decision in the future. © 2018 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.
Vouking, Marius Zambou; Evina, Christine Danielle; Tadenfok, Carine Nouboudem
2014-01-01
The World Health Organization (WHO) estimated in 2012 that 287,000 maternal deaths occurred in 2010; sub-Saharan Africa (56%) and Southern Asia (29%) accounted for the global burden of maternal deaths. Men are also recognized to be responsible for the large proportion of ill reproductive health suffered by their female partners. Male involvement helps not only in accepting a contraceptive but also in its effective use and continuation. The objectives were to assess men's knowledge, attitude, and practice of modern contraceptive methods; determine the level of spousal communication about family planning decision making; and investigate the correlates of men's opinion about their roles in family planning decision making. We searched the following electronic databases from January 1995 to December 2013: Medline, Embase, CINAHL, LILAS, International Bibliography of Social Sciences, Social Services Abstracts, and Sociological Abstracts. Along with MeSH terms and relevant keywords, we used the Cochrane Highly Sensitive Search Strategy for identifying reports of articles in PubMed. There were no restrictions to language or publication status. Of 137 hits, 7 papers met the inclusion criteria. The concept of family planning was well known to men. In the Nigerian study, almost (99%) men were aware of the existence of modern contraceptives, and most of them were aware of at least two modern methods. Awareness of the condom was highest (98%). In the Malawi study, all of the participants reported that they were not using contraception before the intervention. In Ethiopia, above 90% of male respondents have supported and approved using and choosing family planning methods, but none of them practiced terminal methods. Generally, more male respondents disagreed than agreed that men should make decisions about selected family planning issues in the family. Decision-making dynamics around method choice followed a slightly different pattern. According to female participants, decisions regarding method choice were equally made by women or jointly, with male-dominated decisions falling last. There are many challenges to increase male involvement in family planning services. So far very few interventions addressing these challenges have been evaluated scientifically. Health education campaigns to improve beliefs and attitudes of men are absolutely needed. Additionally, improving accessibility, affordability, availability, accommodation and acceptability of family planning service venues will make them more attractive for male partners. PMID:25922638
Vouking, Marius Zambou; Evina, Christine Danielle; Tadenfok, Carine Nouboudem
2014-01-01
The World Health Organization (WHO) estimated in 2012 that 287,000 maternal deaths occurred in 2010; sub-Saharan Africa (56%) and Southern Asia (29%) accounted for the global burden of maternal deaths. Men are also recognized to be responsible for the large proportion of ill reproductive health suffered by their female partners. Male involvement helps not only in accepting a contraceptive but also in its effective use and continuation. The objectives were to assess men's knowledge, attitude, and practice of modern contraceptive methods; determine the level of spousal communication about family planning decision making; and investigate the correlates of men's opinion about their roles in family planning decision making. We searched the following electronic databases from January 1995 to December 2013: Medline, Embase, CINAHL, LILAS, International Bibliography of Social Sciences, Social Services Abstracts, and Sociological Abstracts. Along with MeSH terms and relevant keywords, we used the Cochrane Highly Sensitive Search Strategy for identifying reports of articles in PubMed. There were no restrictions to language or publication status. Of 137 hits, 7 papers met the inclusion criteria. The concept of family planning was well known to men. In the Nigerian study, almost (99%) men were aware of the existence of modern contraceptives, and most of them were aware of at least two modern methods. Awareness of the condom was highest (98%). In the Malawi study, all of the participants reported that they were not using contraception before the intervention. In Ethiopia, above 90% of male respondents have supported and approved using and choosing family planning methods, but none of them practiced terminal methods. Generally, more male respondents disagreed than agreed that men should make decisions about selected family planning issues in the family. Decision-making dynamics around method choice followed a slightly different pattern. According to female participants, decisions regarding method choice were equally made by women or jointly, with male-dominated decisions falling last. There are many challenges to increase male involvement in family planning services. So far very few interventions addressing these challenges have been evaluated scientifically. Health education campaigns to improve beliefs and attitudes of men are absolutely needed. Additionally, improving accessibility, affordability, availability, accommodation and acceptability of family planning service venues will make them more attractive for male partners.
Brummell, Stephen P; Seymour, Jane; Higginbottom, Gina
2016-05-01
Despite media images to the contrary, cardiopulmonary resuscitation in emergency departments is often unsuccessful. The purpose of this ethnographic study was to explore how health care professionals working in two emergency departments in the UK, make decisions to commence, continue or stop resuscitation. Data collection involved participant observation of resuscitation attempts and in-depth interviews with nurses, medical staff and paramedics who had taken part in the attempts. Detailed case examples were constructed for comparative analysis. Findings show that emergency department staff use experience and acquired tacit knowledge to construct a typology of cardiac arrest categories that help them navigate decision making. Categorisation is based on 'less is more' heuristics which combine explicit and tacit knowledge to facilitate rapid decisions. Staff then work as a team to rapidly assimilate and interpret information drawn from observations of the patient's body and from technical, biomedical monitoring data. The meaning of technical data is negotiated during staff interaction. This analysis was informed by a theory of 'bodily' and 'technical' trajectory alignment that was first developed from an ethnography of death and dying in intensive care units. The categorisation of cardiac arrest situations and trajectory alignment are the means by which staff achieve consensus decisions and determine the point at which an attempt should be withdrawn. This enables them to construct an acceptable death in highly challenging circumstances. Copyright © 2016 Elsevier Ltd. All rights reserved.
[The relationship between career decision-making self efficacy and anxiety].
Yao, Chen; Cai, Yun; Liu, Jia; Shan, Dan; Zhou, Xia
2012-03-01
The purpose of the paper is to examine the relationship among Career Decision-Making Self Efficacy, existential anxiety and anxiety in the sample of college students during the professional choice. Data on The Revised Career Decision-Making Self-Efficacy-Shot Form, Existential Anxiety Scale (EAS), SCL-90 and self-identity status were collected and analyzed on a sample of 500 college students. 201 rural students' career decision making self-efficacy scores were as follows: self-appraisal (12.58 ± 3.48), occupational information (12.07 ± 3.05), goal selection (12.48 ± 3.51), planning (12.17 ± 3.10), problem solving (9.75 ± 2.38), all scores were lower than urban students, the difference was statistically significant (P < 0.01). Rural Students' anxiety dimension score were as follows: death and the fate of anxiety (14.75 ± 2.56), the meaningless and empty anxiety (19.32 ± 2.88), condemnation and guilt anxiety (13.72 ± 2.38), alienation and loneliness anxiety (16.82 ± 2.51), all scores are higher than urban students, the difference was statistically significant (P < 0.01). There is negative correlation between Anxiety and career decision making self-efficacy. There is a significant positive correlation between anxiety and existential anxiety. There exists a significant negative correlation among factors of student and career decision making self-efficacy and anxiety. Meaningless and emptiness anxiety on career decision making self-efficacy are significant predictors. There is negative correlation among existential anxiety, occupational information and anxiety during the professional choice.
Panhuyzen-Goedkoop, Nicole M; Smeets, Joep L R M
2014-08-01
Safe sports participation involves protecting athletes from injury and life-threatening situations. Preparticipation cardiovascular screening (PPS) in athletes is intended to prevent exercise-related sudden cardiac death by medical management of athletes at risk, which may include disqualification from sports participation. The screening physician relies on current guidelines and expert recommendations for management and decision-making. There is concern about false-positive screening results and wrongly grounding an athlete. Similarly, there is a concern about false-negative screening results and athletes participating with potentially lethal disorders. Who is legally responsible if an athlete suddenly dies after a proper PPS resulting in low risk? Several consensus documents based on expert opinion describe only a few lines on legal responsibilities in eligibility screening and disqualification decision-making in athletes. This article discusses legal responsibilities and concerns in eligibility decision-making for physicians. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Papavasiliou, Evangelia Evie; Chambaere, Kenneth; Deliens, Luc; Brearley, Sarah; Payne, Sheila; Rietjens, Judith; Vander Stichele, Robert; Van den Block, Lieve
2014-06-01
Research on continuous deep sedation until death has focused on estimating prevalence and describing clinical practice across care settings. However, evidence on sedation practices by physician specialty is scarce. To compare and contrast physician-reported practices on continuous deep sedation until death between general practitioners and medical specialists. A secondary analysis drawing upon data from a large-scale, population-based, retrospective survey among physicians in Flanders, Belgium in 2007. Symptom prevalence and characteristics of sedation (drugs used, artificial nutrition and hydration administered, intentions, and decision-making) were measured. Response rate was 58.4%. The frequency of continuous deep sedation until death among all deaths was 11.3% for general practitioners and 18.4% for medical specialists. General practitioners reported significantly higher rates of severity and mean intensity of pain, delirium, dyspnea, and nausea in the last 24 h of life for sedated patients and a higher number of severe symptoms than medical specialists. No differences were found between groups in the drugs used, except in propofol, reported only by medical specialists (in 15.8% of all cases). Artificial nutrition and hydration was withheld or withdrawn in 97.2% of general practitioner and 36.2% of medical specialist cases. Explicit life-shortening intentions were reported by both groups (for 3%-4% of all cases). Continuous deep sedation until death was initiated without consent or request of either the patient or the family in 27.9% (medical specialists) and 4.7% (general practitioners) of the cases reported. Considerable variation, often largely deviating from professional guidelines, was observed in physician-reported performance and decision-making, highlighting the importance of providing clearer guidance on the specific needs of the context in which continuous deep sedation until death is to be performed. © The Author(s) 2014.
Foundations Invest In Environmental Health.
Sessions, Kathryn; Fortunato, Karla; Johnson, Philip R S; Panek, Amy
2016-11-01
Nearly one in four deaths globally are due to environmental hazards such as air and water pollution, according to the World Health Organization. However, knowledge about how the environment affects health and health equity outcomes has not been well integrated into decisions that shape the conditions in which people live, work, and play. To address this challenge, US foundations have invested millions of dollars to make it easier to incorporate environmental health information into decisions ranging from family purchases and governmental policy making to business, medical, and other professional practices. This article summarizes grant making aimed at improving environmental conditions to improve health and health equity outcomes. We provide examples of environmental health grants that focus on tools that the public, policy makers, and professionals can use in making decisions. We found that the investment in and attention to environmental factors, including in work addressing social determinants of health, have been insufficient to realize the potential for reducing negative environmental impacts on health and health disparities. We argue that the grant making highlighted here has increased knowledge that could enable more widespread consideration of environmental health in many decisions, with positive effects on health and health equity. Project HOPE—The People-to-People Health Foundation, Inc.
Frivold, Gro; Slettebø, Åshild; Heyland, Daren K; Dale, Bjørg
2018-01-01
The aim of this study was to explore family members' satisfaction with care and decision-making during the intensive care units stay and their follow-up needs after the patient's discharge or death. A cross-sectional survey study was conducted. Family members of patients recently treated in an ICU were participating. The questionnaire contented of background variables, the instrument Family Satisfaction in ICU (FS-ICU 24) and questions about follow-up needs. Descriptive and non-parametric statistics and a multiple linear regression were used in the analysis. A total of 123 (47%) relatives returned the questionnaire. Satisfaction with care was higher scored than satisfaction with decision-making. Follow- up needs after the ICU stay was reported by 19 (17%) of the participants. Gender and length of the ICU stay were shown as factors identified to predict follow-up needs.
Chiarello, Elizabeth
2013-12-01
Social science studies of bioethics demonstrate that ethics are highly contextual, functioning differently across local settings as actors make daily decisions "on the ground." Sociological studies that demonstrate the key role organizations play in shaping ethical decision-making have disproportionately focused on physicians and nurses working in hospital settings where they contend with life and death issues. This study broadens our understanding of the contexts of ethical decision-making by empirically examining understudied healthcare professionals - pharmacists - working in two organizational settings, retail and hospital, where they act as gatekeepers to regulated goods and services as they contend with ethical issues ranging from the serious to the mundane. This study asks: How do organizations shape pharmacists' identification, negotiation, and resolution of ethical challenges; in other words, how do organizations shape pharmacists' gatekeeping processes? Based on 95 semi-structured interviews with U.S. pharmacists practicing in retail and hospital pharmacies conducted between September 2009 and May 2011, this research finds that organizations influence ethical decision-making by shaping how pharmacists construct four gatekeeping processes: medical, legal, fiscal, and moral. Each gatekeeping process manifests differently across organizations due to how these settings structure inter-professional power dynamics, proximity to patients, and means of accessing information. Findings suggest new directions for theorizing about ethical decision-making in medical contexts by drawing attention to new ethical actors, new organizational settings, an expanded definition of ethical challenges, and a broader conceptualization of gatekeeping. Copyright © 2012 Elsevier Ltd. All rights reserved.
Medical futility in children's nursing: making end-of-life decisions.
Brien, Irene O; Duffy, Anita; Shea, Ellen O
Caring for infants at end of life is challenging and distressing for parents and healthcare professionals, especially in relation to making decisions regarding withholding or withdrawal of treatment. The concept of medical futility must be considered under these circumstances. Parents and healthcare professionals should be involved together in making these difficult decisions. However, for some parents, emotions and guilt often are unbearable and, understandably, parents can be reluctant to make a decision. Despite the recognition of parental autonomy, if parents disagree with a decision made by medical staff, the case will be referred to and solved by the courts. The courts' decisions are often based on the best interest of the child. In this article, the authors discuss the concepts of 'parental autonomy' and 'the child's best interests' when determining medical futility for infants or neonates. The role of the nurse when caring for the dying child and their family is multifaceted. While nurses do not have a legitimate role in decision making at the end of life, it is often nurses who, through their advocacy role, inform doctors about parents' wishes and it is often nurses who support parents during this difficult time. Furthermore, nurses caring for dying children should be familiar to the family, experienced in end-of-life care and comfortable talking to parents about death and dying and treatment choices. Children's nurses therefore require advanced communication skills and an essential understanding of the ethical and legal knowledge relating to medical futility in end-of-life children's nursing.
Paternina-Caicedo, Angel; De la Hoz-Restrepo, Fernando; Alvis-Guzmán, Nelson
2015-07-01
The competing choices of vaccination with either RV1 or RV5, the potential budget impact of vaccines on the EPI with different prices and new evidence make important an updated analysis for health decision makers in each country. The objective of this study is to assess cost-effectiveness of the monovalent and pentavalent rotavirus vaccines and impact on children deaths, inpatient and outpatient visits in 116 low and middle income countries that represent approximately 99% of rotavirus mortality. A decision tree model followed hypothetical cohorts of children from birth up to 5 years of age for each country in 2010. Inputs were gathered from international databases and previous research on incidence and effectiveness of monovalent and pentavalent vaccines. Costs were expressed in 2010 international dollars. Outcomes were reported in terms of cost per disability-adjusted life-year averted, comparing no vaccination with either monovalent or pentavalent mass introduction. Vaccine price was assumed fixed for all world low-income and middle-income countries. Around 292,000 deaths, 3.34 million inpatient cases and 23.09 million outpatient cases would occur with no vaccination. In the base-case scenario, monovalent vaccination would prevent 54.7% of inpatient cases and 45.4% of deaths. Pentavalent vaccination would prevent 51.4% of inpatient cases and 41.1% of deaths. The vaccine was cost-effective in all world countries in the base-case scenario for both vaccines. Cost per disability-adjusted life-year averted in all selected countries was I$372 for monovalent, and I$453 for pentavalent vaccination. Rotavirus vaccine is cost-effective in most analyzed countries. Despite cost-effectiveness analysis is a useful tool for decision making in middle-income countries, for low-income countries health decision makers should also assess the impact of introducing either vaccine on local resources and budget impact analysis of vaccination.
Janvier, Annie; Lorenz, John M; Lantos, John D
2012-08-01
When physicians are asked for a consult for women in premature labour, they face a complex set of challenges. Policy statements recommend that women be given detailed information about the risks of various outcomes, including death, long-term disability and various specific neonatal problems. Both personal narratives and studies suggest that parents also base their decisions on factors other than the probabilistic facts about expected outcomes. Statistics are difficult to understand at any time. Rational decision-making may be difficult when taking life-and-death decisions. Furthermore, the role of emotions is not discussed in peri-viability guidelines. We argue against trying to tell parents every fact that we think might be relevant to their decision. This may be overwhelming for many parents. Instead, doctors should try to discern, on a case-by-case basis, what particular parents want and need. Information and delivery of information should be personalized. Unfortunately, evidence in this area is limited. © 2012 The Author(s)/Acta Paediatrica © 2012 Foundation Acta Paediatrica.
Mathew, R; Davies, N; Manthorpe, J; Iliffe, S
2016-07-19
Decision-making, when providing care and treatment for a person with dementia at the end of life, can be complex and challenging. There is a lack of guidance available to support practitioners and family carers, and even those experienced in end of life dementia care report a lack of confidence in decision-making. It is thought that the use of heuristics (rules of thumb) may aid decision-making. The aim of this study is to identify whether heuristics are used in end of life dementia care, and if so, to identify the context in which they are being used. A narrative literature review was conducted taking a systematic approach to the search strategy, using the Centre for Reviews and Dissemination guidelines. Rapid appraisal methodology was used in order to source specific and relevant literature regarding the use of heuristics in end of life dementia care. A search using terms related to dementia, palliative care and decision-making was conducted across 4 English language electronic databases (MEDLINE, EMBASE, PsycINFO and CINAHL) in 2015. The search identified 12 papers that contained an algorithm, guideline, decision tool or set of principles that we considered compatible with heuristic decision-making. The papers addressed swallowing and feeding difficulties, the treatment of pneumonia, management of pain and agitation, rationalising medication, ending life-sustaining treatment, and ensuring a good death. The use of heuristics in palliative or end of life dementia care is not described in the research literature. However, this review identified important decision-making principles, which are largely a reflection of expert opinion. These principles may have the potential to be developed into simple heuristics that could be used in practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Mathew, R; Davies, N; Manthorpe, J; Iliffe, S
2016-01-01
Objective Decision-making, when providing care and treatment for a person with dementia at the end of life, can be complex and challenging. There is a lack of guidance available to support practitioners and family carers, and even those experienced in end of life dementia care report a lack of confidence in decision-making. It is thought that the use of heuristics (rules of thumb) may aid decision-making. The aim of this study is to identify whether heuristics are used in end of life dementia care, and if so, to identify the context in which they are being used. Design A narrative literature review was conducted taking a systematic approach to the search strategy, using the Centre for Reviews and Dissemination guidelines. Rapid appraisal methodology was used in order to source specific and relevant literature regarding the use of heuristics in end of life dementia care. Data sources A search using terms related to dementia, palliative care and decision-making was conducted across 4 English language electronic databases (MEDLINE, EMBASE, PsycINFO and CINAHL) in 2015. Results The search identified 12 papers that contained an algorithm, guideline, decision tool or set of principles that we considered compatible with heuristic decision-making. The papers addressed swallowing and feeding difficulties, the treatment of pneumonia, management of pain and agitation, rationalising medication, ending life-sustaining treatment, and ensuring a good death. Conclusions The use of heuristics in palliative or end of life dementia care is not described in the research literature. However, this review identified important decision-making principles, which are largely a reflection of expert opinion. These principles may have the potential to be developed into simple heuristics that could be used in practice. PMID:27436665
2011-01-01
clinical decision- making paradigms, coupled with regula- tory and technical limitations, is just one of the hurdles that has kept advanced information...responses to assist care personnel during the resuscitation phase. CDSSs have been successfully used in the clinical setting for several years (23–24...because of clinical complications, death, or other factors were excluded. The control cohort included only patients who sur- vived for the initial 24
Who foregoes survivor protection in employer-sponsored pension annuities?
Johnson, Richard W; Uccello, Cori E; Goldwyn, Joshua H
2005-02-01
Retirees in traditional pension plans must generally choose between single life annuities, which provide regular payments until death, and joint and survivor annuities, which pay less each month but continue to make payments to the spouse after the death of the retired worker. This article examines the payout decision and measures the share of married retirees with pension annuities who forego survivor protection. The analysis consists of a probit model of the pension payout decision, based on data from the 1992-2000 waves of the Health and Retirement Study. More than one quarter (28%) of married men and two thirds of married women receiving employer-sponsored retirement annuities declined survivor protection. Men with small pensions and limited household wealth, men in better health than their spouses, and men whose spouses have pension coverage from their own employers are more likely than other men to reject survivor protection. Most workers appear to make payout decisions by rationally balancing the costs and benefits of each type of annuity, suggesting that existing measures to encourage joint and survivor annuities are adequate. However, the growth in 401(k) plans, which are generally not covered by existing laws protecting spousal pension rights, may leave widows vulnerable.
Wagemans, Annemieke M A; Van Schrojenstein Lantman-de Valk, Henny M J; Proot, Ireen M; Metsemakers, Job; Tuffrey-Wijne, Irene; Curfs, Leopold M G
2013-09-01
Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.
Caregivers’ perspectives on decision making about lung transplantation in cystic fibrosis
Dellon, Elisabeth P.; Shores, Mitchell D.; Nelson, Katherine I.; Wolfe, Joanne; Noah, Terry L.; Hanson, Laura C.
2013-01-01
Context Lung transplantation extends survival for some patients with advanced cystic fibrosis, but it is complicated, has many potential risks, and its outcomes are difficult to predict. No standards exist for informed decision making about transplantation. Objective To assess decision making from the perspective of caregivers of patients who faced the transplant decision before dying of cystic fibrosis or transplant complications. Design Semistructured interviews with descriptive and qualitative content analysis. Participants Twenty-eight caregivers of patients with cystic fibrosis who received care at our center and died between 1996 and 2006. Results Of 28 patients who considered lung transplantation, 19 (68%) received transplants, 6 (21%) died while waiting for transplant, and 3 (11%) declined transplant. Three caregivers (11%) thought that the patient did not fully understand the reason for transplant referral. Five (18%) thought that the patient did not fully understand potential risks. Ten (36%) thought that alternatives were not fully understood. The only alternatives to transplant identified, progressive illness and the possibility of earlier death without transplant, were unacceptable to most. Thirteen caregivers (46%) reported that the patient thought that declining transplant was not an option. Caregivers described the decision as “easy” for 19 (68%), often expressing a sentiment of “do or die.” Those who described the decision as “easy” recalled fewer elements of informed decision making. Conclusions From caregivers’ reports, patients with cystic fibrosis may not fully understand risks of and alternatives to lung transplantation. Because a strong desire to prolong life necessitates honest communication about potential outcomes, interventions are needed to facilitate high-quality decision making. PMID:20050454
Ladin, Keren; Lin, Naomi; Hahn, Emily; Zhang, Gregory; Koch-Weser, Susan; Weiner, Daniel E
2017-08-01
Although shared decision-making (SDM) can better align patient preferences with treatment, barriers remain incompletely understood and the impact on patient satisfaction is unknown. This is a qualitative study with semistructured interviews. A purposive sample of prevalent dialysis patients ≥65 years of age at two facilities in Greater Boston were selected for diversity in time from initiation, race, modality and vintage. A codebook was developed and interrater reliability was 89%. Codes were discussed and organized into themes. A total of 31 interviews with 23 in-center hemodialysis patients, 1 home hemodialysis patient and 7 peritoneal dialysis patients were completed. The mean age was 76 ± 9 years. Two dominant themes (with related subthemes) emerged: decision-making experiences and satisfaction, and barriers to SDM. Subthemes included negative versus positive decision-making experiences, struggling for autonomy, being a 'good patient' and lack of choice. In spite of believing that dialysis initiation should be the patient's choice, no patients perceived that they had made a choice. Patients explained that this is due to the perception of imminent death or that the decision to start dialysis belonged to physicians. Clinicians and family frequently overrode patient preferences, with patient autonomy honored mostly to select dialysis modality. Poor decision-making experiences were associated with low treatment satisfaction. Despite recommendations for SDM, many older patients were unaware that dialysis initiation was voluntary, held mistaken beliefs about their prognosis and were not engaged in decision-making, resulting in poor satisfaction. Patients desired greater information, specifically focusing on the acuity of their choice, prognosis and goals of care. © The Author 2016. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
Nursing research. Components of a clinical research study.
Bargagliotti, L A
1988-09-01
Nursing research is the systematic collection and analysis of data about clinically important phenomena. While there are norms for conducting research and rules for using certain research procedures, the reader must always filter the research report against his or her nursing knowledge. The most common questions a reader should ask are "Does it make sense? Can I think of any other reasonable explanation for the findings? Do the findings fit what I have observed?" If the answers are reasonable, research findings from carefully conducted studies can provide a basis for making nursing decisions. One of the earliest accounts of nursing research, which indicates the power of making systematic observations, was Florence Nightingale's study. It compared deaths among soldiers in the Crimean War with deaths of soldiers in the barracks of London. Her research demonstrated that soldiers in the barracks had a much higher death rate than did the soldiers at war. On the basis of the study, sanitary conditions in the barracks were changed substantially.
Modelling risk aversion to support decision-making for controlling zoonotic livestock diseases.
van Asseldonk, M A P M; Bergevoet, R H M; Ge, L
2013-12-01
Zoonotic infectious livestock diseases are becoming a significant burden for both animal and human health and are rapidly gaining the attention of decision-makers who manage public health programmes. If control decisions have only monetary components, governments are generally regarded as being risk-neutral and the intervention strategy with the highest expected benefit (lowest expected net costs) should be preferred. However, preferences will differ and alternative intervention plans will prevail if (human) life and death outcomes are involved. A rational decision framework must therefore consider risk aversion in the decision-maker and controversial values related to public health. In the present study, risk aversion and its impact on both the utility for the monetary component and the utility for the non-monetary component is shown to be an important element when dealing with emerging zoonotic infectious livestock diseases and should not be ignored in the understanding and support of decision-making. The decision framework was applied to several control strategies for the reduction of human cases of brucellosis (Brucella melitensis) originating from sheep in Turkey.
1984-08-01
philosophical issues that must be addressed. The definition of death, "do not resuscitate" orders (DNR), ordinary vs extraordinary care, euthanasia , demands to...patient autonomy, quality of life, and alloca- tion of resources. Euthanasia is defined as the action of inducing the painless death of a person for...certain situations for justifying euthanasia , at least on moral grounds. At the end stages of some diseases, cancer for example, patients may endure
Bramstedt, K A; Wenger, N S
2001-05-01
Left ventricular assist devices (LVADs) are a relatively new technology that is increasingly used to preserve cardiac function. These devices work by a mechanism that may complicate ethical decision-making for patients who subsequently lose decision-making capacity and are no longer considered transplant candidates. Using a clinical case from our medical center, we explored the complex ethical issues associated with the discontinuation of LVAD therapy by discussing how this device is distinct from the withdrawal of other treatments. While halting an implanted LVAD may permit a patient to die, the deactivated device itself may contribute to patient death due to the potential for blood backflow and pooling, as well as the disruption of heart contractility. Inadequate informed consent and failure to appoint a surrogate decision-maker in advance of the implant procedure resulted in a complex ethical dilemma for the patient's family and the medical team. Clinicians and families must consider the benefits and burdens of LVAD therapy as they do when considering removal of other life-sustaining treatment. The informed consent process associated with LVADs as bridging technology should include extensive consideration of the purpose of the device, future circumstances in which it may be halted, and how such situations would be recognized and handled. Appointment of a surrogate decision-maker before the surgical procedure is essential.
Disputed family claims to bury or cremate the dead.
Freckelton, Ian
2009-10-01
A significant number of court decisions in Australia have wrestled with the issue of who among equally ranked next-of-kin should have priority in determining the timing and place of a loved one's burial or cremation. The first port of call for such decision-making can be the coroner who must determine to whom to release a body, where a death has been reportable, but disputation occurs also in non-coronial contexts and has repeatedly fallen for resolution by Supreme Court judges. The decisions have identified a variety of practical considerations which have been taken into account. However, there remains considerable uncertainty about the significance of factors such as religious, spiritual and cultural values, as well as the nature and extent of the care-giving role, as influential considerations in respect of courts' decisions. While greater predictability of courts' decision-making might be therapeutic, it may be that the variability of factual situations precludes the construction of a hierarchy of relevant considerations.
Saving can save from death anxiety: mortality salience and financial decision-making.
Zaleskiewicz, Tomasz; Gasiorowska, Agata; Kesebir, Pelin
2013-01-01
Four studies tested the idea that saving money can buffer death anxiety and constitute a more effective buffer than spending money. Saving can relieve future-related anxiety and provide people with a sense of control over their fate, thereby rendering death thoughts less threatening. Study 1 found that participants primed with both saving and spending reported lower death fear than controls. Saving primes, however, were associated with significantly lower death fear than spending primes. Study 2 demonstrated that mortality primes increase the attractiveness of more frugal behaviors in save-or-spend dilemmas. Studies 3 and 4 found, in two different cultures (Polish and American), that the activation of death thoughts prompts people to allocate money to saving as opposed to spending. Overall, these studies provided evidence that saving protects from existential anxiety, and probably more so than spending.
Espinoza, Russ K E; Willis-Esqueda, Cynthia
2015-04-01
The purpose of the research was to determine whether European American and Latino mock jurors would demonstrate bias in death penalty decision making when mitigation evidence and defendant ethnicity and socioeconomic status (SES) were varied. A total of 561 actual venire persons acted as mock jurors and read a trial transcript that varied a defendant's case information (mitigating circumstances: strong/weak, defendant ethnicity: European American/Latino, and defendant SES: low/high). European American jurors recommended the death penalty significantly more often for the low SES Latino defendant when strength of mitigation evidence was weak. In addition, they also assigned this defendant higher culpability ratings and lower ratings on positive personality trait measures compared with all other conditions. Strong mitigation evidence contributed to lower guilt ratings by European American jurors for the high SES European American defendant. Latino jurors did not differ in their death penalty sentencing across defendant mitigation, ethnicity, or SES conditions. Discussion of in-group favoritism and out-group derogation, as well as suggestions for procedures to diminish juror bias in death penalty cases, is provided. (c) 2015 APA, all rights reserved).
Hospice-assisted death? A study of Oregon hospices on death with dignity.
Campbell, Courtney S; Cox, Jessica C
2012-05-01
Nearly 90% of terminally ill patients who have used Oregon's distinctive death with dignity law to receive a medication to end their lives are enrolled in hospice care programs. In 2009-2010, we conducted a study of the policies developed by Oregon hospices to address patient inquiries and requests for death with dignity. The study examined the stated hospice values and positions and identified the boundaries to participation drawn by the hospice programs to protect personal and programmatic integrity. The boundaries were drawn around 6 key caregiving considerations: (1) language regarding physician-assisted death (PAD); (2) informed decision making by patients; (3) collaboration with physicians; (4) provision of lethal medication; (5) assistance in the patient's act of taking the medication; and (6) staff presence at the time of medication ingestion.
Blumenthal-Barby, Jennifer S; Kostick, Kristin M; Delgado, Estevan D; Volk, Robert J; Kaplan, Holland M; Wilhelms, L A; McCurdy, Sheryl A; Estep, Jerry D; Loebe, Matthias; Bruce, Courtenay R
2015-09-01
Several organizations have underscored the crucial need for patient-centered decision tools to enhance shared decision-making in advanced heart failure. The purpose of this study was to investigate the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement. In-depth, structured interviews with LVAD patients, candidates and caregivers (spouse, family members) (n = 45) were conducted. We also administered a Decisional Regret Scale. Participants reported LVAD decision-making to be quick and reflexive (n = 30), and deferred heavily to clinicians (n = 22). They did not perceive themselves as having a real choice (n = 28). The 2 most prevalent informational domains that participants identified were lifestyle issues (23 items), followed by technical (drive-line, battery) issues (14 items). Participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement (n = 31), and to have an involved caregiver (n = 28) to synthesize information. Some participants demonstrated a lack of clarity regarding transplant probability: 9 of 15 patients described themselves as on a transplant trajectory, yet 7 of these were destination therapy patients. Finally, we found that decisional regret scores were low (1.307). Informed consent and shared-decision making should: (a) help patients offered highly invasive technologies for life-threatening disease get past the initial "anything to avoid thinking about death" reaction and make a more informed decision; (b) clarify transplant status; and (c) focus on lifestyle and technical issues, as patients have the most informational needs in these domains. Copyright © 2015 International Society for Heart and Lung Transplantation. Published by Elsevier Inc. All rights reserved.
ERIC Educational Resources Information Center
Tait, John L.; Johnson, Arthur H.
The trends in population distribution and the composition of Iowa's population are reported in this document in order to provide the leaders and citizens of Iowa with information to assist them in making decisions relating to growth and development. Birth and death rates, rural and urban residence, population by race, and age structure are…
2017-12-01
Action Reports .....................................................................9 2. Psychological Impact of Training... INTEGRATION ...................................................................60 D. JOHN BOYD’S OODA LOOP...impact of a school-based active shooter cannot be understated. Beyond the given risk of injury and death, a potential psychological impact exists to all
Simpson, Christopher S; Hoffmaster, Barry; Dorian, Paul
2005-05-15
Implantable cardioverter defibrillators have been shown to reduce all-cause mortality in some patient populations at risk of sudden death. New Canadian guidelines recommend implantable cardioverter defibrillator therapy for these patients. However, the need for these devices exceeds the funded volumes in many Canadian jurisdictions. As a result, rationing of this resource has been necessary. While rationing at the macro (Ministry of Health) and meso (hospital) levels has achieved some level of acceptance by society, the responsibility for the decisions taken at the micro (individual) patient level actually rests with the physician at the bedside. This 'bedside rationing' creates a moral dilemma for physicians, who are torn between their traditional fiduciary role as 'patient advocate' and the competing role of 'gatekeeper'. This 'downward delegation' of rationing decision-making obscures the reality that rationing occurs, and encourages covert, opaque and inconsistent approaches. The remedy is the development of fair, legitimate procedures for making rationing decisions that include guidelines that structure and constrain those decisions. Macro- and meso-level stakeholders must also recognize and take responsibility for their part in restricting resources in a broadly inclusive and transparent process.
Monitoring Hospitalized Adult Patients for Opioid-Induced Sedation and Respiratory Depression.
Jungquist, Carla R; Smith, Kirsten; Nicely, Kelly L Wiltse; Polomano, Rosemary C
2017-03-01
: Opioid analgesics are commonly administered to hospitalized patients to treat acute pain, but these drugs put patients at risk for serious adverse events, such as unintended advancing sedation, respiratory depression, and death. Nurses play an important role in keeping patients safe by making clinical decisions about the frequency and intensity with which patients receiving IV and epidural opioids should be monitored. To make sound clinical judgments, nurses must be aware of the factors that place patients at elevated risk for adverse opioid-related effects and know how to screen and assess patients for these risks. The authors review the literature on unintended advancing sedation and respiratory depression associated with opioid administration and present evidence-based recommendations for clinical decision making and patient monitoring, using both nursing assessments and electronic technologies.
Toward an Effective Long-Term Strategy for Preventing Motor Vehicle Crashes and Injuries
Mawson, Anthony R.; Walley, E. Kenneth
2014-01-01
Casualties due to motor vehicle crashes (MVCs) include some 40,000 deaths each year in the United States and one million deaths worldwide. One strategy that has been recommended for improving automobile safety is to lower speed limits and enforce them with speed cameras. However, motor vehicles can be hazardous even at low speeds whereas properly protected human beings can survive high-speed crashes without injury. Emphasis on changing driver behavior as the focus for road safety improvements has been largely unsuccessful; moreover, drivers today are increasingly distracted by secondary tasks such as cell phone use and texting. Indeed, the true limiting factor in vehicular safety is the capacity of human beings to sense and process information and to make rapid decisions. Given that dramatic reductions in injuries and deaths from MVCs have occurred over the past century due to improvements in safety technology, despite increases in the number of vehicles on the road and miles driven per vehicle, we propose that an effective long-term strategy for reducing MVC-related injury would be continued technological innovation in vehicle design, aimed at progressively removing the driver from routine operational decision-making. Once this is achieved, high rates of speed could be achieved on open highways, with minimal risk of crashes and injury to occupants and pedestrians. PMID:25116634
Toward an effective long-term strategy for preventing motor vehicle crashes and injuries.
Mawson, Anthony R; Walley, E Kenneth
2014-08-11
Casualties due to motor vehicle crashes (MVCs) include some 40,000 deaths each year in the United States and one million deaths worldwide. One strategy that has been recommended for improving automobile safety is to lower speed limits and enforce them with speed cameras. However, motor vehicles can be hazardous even at low speeds whereas properly protected human beings can survive high-speed crashes without injury. Emphasis on changing driver behavior as the focus for road safety improvements has been largely unsuccessful; moreover, drivers today are increasingly distracted by secondary tasks such as cell phone use and texting. Indeed, the true limiting factor in vehicular safety is the capacity of human beings to sense and process information and to make rapid decisions. Given that dramatic reductions in injuries and deaths from MVCs have occurred over the past century due to improvements in safety technology, despite increases in the number of vehicles on the road and miles driven per vehicle, we propose that an effective long-term strategy for reducing MVC-related injury would be continued technological innovation in vehicle design, aimed at progressively removing the driver from routine operational decision-making. Once this is achieved, high rates of speed could be achieved on open highways, with minimal risk of crashes and injury to occupants and pedestrians.
Elders' experiences of the death of an adult child.
Smith, Marilyn E; Nunley, Barbara L; Kerr, Patrick L; Galligan, Hunter
2011-01-01
The death of a child can result in complicated grief. Thirty-one adults, 60 years of age or older, who lost an adult child, participated in a qualitative study using a focus group format that allowed them to discuss their experience. A hermeneutical approach was used to develop an overall thematic description of what it meant to an older person to lose an adult child. Four major themes emerged: losses, limited influence/decision making power, regrets, and decreased quality of life. Suggested interventions to prevent complicated grief in elders who experienced the death of an adult child include attentive listening, storytelling, and the use of metaphors.
Pathophysiology of Myocardial Infarction and Acute Management Strategies.
Tibaut, Miha; Mekis, Dusan; Petrovic, Daniel
2017-01-01
On an annual basis, 13.2% of all deaths are attributable to coronary artery disease (CAD), which makes CAD - with 7.4 million deaths - the leading cause of death in the world. In this review, we discuss current knowledge in the pathophysiology of atherosclerosis with its progression to stable CAD and its destabilization and complication with thrombus formation - myocardial infarction (MI). Next, we describe mechanisms of myocardial cell death in MI, the ischemia-reperfusion injury, leftventricular remodeling and complications of MI. Furthermore, we add acute management strategies concentrating on medical therapy, a decision on the reperfusion strategy, timing and cardiac protection by ischemic preconditioning, post-conditioning and remote ischemic conditioning. Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.
Schuster, Steven R; Pockaj, Barbara A; Bothe, Mary R; David, Paru S; Northfelt, Donald W
2012-09-10
Breast cancer is the most common malignancy among women in the United States with the second highest incidence of cancer-related death following lung cancer. The decision-making process regarding adjuvant therapy is a time intensive dialogue between the patient and her oncologist. There are multiple tools that help individualize the treatment options for a patient. Population-based analysis with Adjuvant! Online and genomic profiling with Oncotype DX are two commonly used tools in patients with early stage, node-negative breast cancer. This case report illustrates a situation in which the population-based prognostic and predictive information differed dramatically from that obtained from genomic profiling and affected the patient's decision. In light of this case, we discuss the benefits and limitations of these tools.
Medicine vs. prayer: the case of Kara Neumann.
O'Mathúna, Dónal P; Lang, Kellie
2008-01-01
Religious beliefs and the use of complementary and alternative medicine can help or hinder health care and the well being of children, who are often unable to make informed decisions for themselves, but instead, depend on their parents or caregivers to make health care decisions for them. Tragically, this can sometimes result in prolonged suffering and death when parents or caregivers refuse treatment due to their own personal beliefs. This two-part article explores the case of Kara Neumann, an 11-year-old girl who died after her parents denied her medical care in lieu of prayer to cure her "spiritual attack," and the role pediatric nurses can play in educating patients and their families.
Wirth-Petrik, Brittney; Guenther, R Kim
2012-12-01
In a study of terror management theory, participants first responded to prompts asking them to imagine their own death or dental pain and later rated the desirability of a generic job described explicitly as extremely stressful. The job description included either an American or foreign company logo. As predicted by terror management theory, the participants shown an American logo ironically desired the stressful job more, having been prompted with reminders of death than with reminders of dental pain. This study is the first to examine terror management theory's prediction of the influence of symbols of cultural worldview on health-related decisions. The authors discuss possible implications of the findings for making unintentionally stress-inducing decisions and for public health campaigns.
Antonio, Michael E
2006-01-01
This paper examines the impact of the defendant's appearance during the trial on capital jurors' punishment decision. The data used in this analysis were gathered by the Capital Jury Project (CJP), a national program of research on the decision-making of capital jurors. A series of multivariate logistic regression analyses were conducted using four aggravating circumstances related to the killing and eight defendant appearance variables as predictors of jurors' punishment decision at three points during the capital trial: (1) after the punishment phase ended, but before formal deliberation began; (2) when the first vote was taken on punishment at jury deliberations; and (3) at the final vote on punishment. Results indicated that when the defendant appeared emotionally involved during the trial (i.e. sorry and sincere) jurors either favored a life sentence or were undecided about punishment; however, when the defendant appeared emotionally uninvolved during the trial (i.e. bored) jurors either sought a death sentence or remained undecided. Policy implications will be discussed. Copyright (c) 2006 John Wiley & Sons, Ltd.
Moral distress in end-of-life care in the intensive care unit.
St Ledger, Una; Begley, Ann; Reid, Joanne; Prior, Lindsay; McAuley, Danny; Blackwood, Bronagh
2013-08-01
To explore moral distress in relatives doctors and nurses, in end-of-life care decision-making, in the adult intensive care unit. Many deaths in intensive care involve decisions about withholding and withdrawing therapy, potentially triggering moral distress. Moral distress occurs when individuals feel constrained from acting in accordance with moral choice, or act against moral judgement, generating painful, unresolved emotions, and problems that continue long after an event. Prior research has focused mainly on nurses; less is known about doctors' experiences and occurrence and impact on relatives is unknown. A narrative inquiry case study approach, funded by a Northern Ireland Health and Social Care Doctorate Fellowship Award (April 2011). In-depth digitally recorded interviews will be conducted with relatives, doctors, and nurses involved in end-of-life cases comprising: (1) withdrawal of therapy, including circulatory death organ donation; (2) non-escalation of therapy; and (3) brain stem death with a request for organ donation. Relatives will be offered the opportunity to share their experiences on 'Healthtalkonline' by copyrighting audio-visual interviews to the Health Experiences Research Group, Oxford University. Research Ethics Committee approval was obtained (April 2012). This is the first time that moral distress is explored, in a case approach, among relatives, doctors, and nurses intimately involved in end-of-life decisions in intensive care. Dissemination of findings will make a large contribution to international knowledge and understanding in this area and alert healthcare professionals and relatives to an otherwise under-recognized, but potentially detrimental, experience. Findings will inform education, practice, and policy. © 2012 Blackwell Publishing Ltd.
De Vries, Kay; Plaskota, Marek
2017-04-01
Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients. Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data. Facilitating a "peaceful death" was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be "comfortable," "relaxed," and "calm" at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, "juggling the drugs," "causing the death," sedating young people, the family "requesting" sedation, and believing that hospice is a place where death is hastened. Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.
Saving Can Save from Death Anxiety: Mortality Salience and Financial Decision-Making
Zaleskiewicz, Tomasz; Gasiorowska, Agata; Kesebir, Pelin
2013-01-01
Four studies tested the idea that saving money can buffer death anxiety and constitute a more effective buffer than spending money. Saving can relieve future-related anxiety and provide people with a sense of control over their fate, thereby rendering death thoughts less threatening. Study 1 found that participants primed with both saving and spending reported lower death fear than controls. Saving primes, however, were associated with significantly lower death fear than spending primes. Study 2 demonstrated that mortality primes increase the attractiveness of more frugal behaviors in save-or-spend dilemmas. Studies 3 and 4 found, in two different cultures (Polish and American), that the activation of death thoughts prompts people to allocate money to saving as opposed to spending. Overall, these studies provided evidence that saving protects from existential anxiety, and probably more so than spending. PMID:24244497
Decision-making tools in prostate cancer: from risk grouping to nomograms.
Fontanella, Paolo; Benecchi, Luigi; Grasso, Angelica; Patel, Vipul; Albala, David; Abbou, Claude; Porpiglia, Francesco; Sandri, Marco; Rocco, Bernardo; Bianchi, Giampaolo
2017-12-01
Prostate cancer (PCa) is the most common solid neoplasm and the second leading cause of cancer death in men. After the Partin tables were developed, a number of predictive and prognostic tools became available for risk stratification. These tools have allowed the urologist to better characterize this disease and lead to more confident treatment decisions for patients. The purpose of this study is to critically review the decision-making tools currently available to the urologist, from the moment when PCa is first diagnosed until patients experience metastatic progression and death. A systematic and critical analysis through Medline, EMBASE, Scopus and Web of Science databases was carried out in February 2016 as per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. The search was conducted using the following key words: "prostate cancer," "prediction tools," "nomograms." Seventy-two studies were identified in the literature search. We summarized the results into six sections: Tools for prediction of life expectancy (before treatment), Tools for prediction of pathological stage (before treatment), Tools for prediction of survival and cancer-specific mortality (before/after treatment), Tools for prediction of biochemical recurrence (before/after treatment), Tools for prediction of metastatic progression (after treatment) and in the last section biomarkers and genomics. The management of PCa patients requires a tailored approach to deliver a truly personalized treatment. The currently available tools are of great help in helping the urologist in the decision-making process. These tests perform very well in high-grade and low-grade disease, while for intermediate-grade disease further research is needed. Newly discovered markers, genomic tests, and advances in imaging acquisition through mpMRI will help in instilling confidence that the appropriate treatments are being offered to patients with prostate cancer.
Renterghem, Veerle Van; Pype, Peter; Aelbrecht, Karolien; Derese, Anselme; Deveugele, Myriam
2015-01-01
Background Many general practitioners (GPs) are willing to provide end-of-life (EoL) home care for their patients. International research on GPs’ approach to care in patients’ final weeks of life showed a combination of palliative measures with life-preserving actions. Aim To explore the GP’s perspective on life-preserving versus “letting go” decision-making in EoL home care. Design Qualitative analysis of semi-structured interviews with 52 Belgian GPs involved in EoL home care. Results Nearly all GPs adopted a palliative approach and an accepting attitude towards death. The erratic course of terminal illness can challenge this approach. Disruptive medical events threaten the prospect of a peaceful end-phase and death at home and force the GP either to maintain the patient’s (quality of) life for the time being or to recognize the event as a step to life closure and “letting the patient go”. Making the “right” decision was very difficult. Influencing factors included: the nature and time of the crisis, a patient’s clinical condition at the event itself, a GP’s level of determination in deciding and negotiating “letting go” and the patient’s/family’s wishes and preparedness regarding this death. Hospitalization was often a way out. Conclusions GPs regard alternation between palliation and life-preservation as part of palliative care. They feel uncertain about their mandate in deciding and negotiating the final step to life closure. A shortage of knowledge of (acute) palliative medicine as one cause of difficulties in letting-go decisions may be underestimated. Sharing all these professional responsibilities with the specialist palliative home care teams would lighten a GP’s burden considerably.Key PointsA late transition from a life-preserving mindset to one of “letting go” has been reported as a reason why physicians resort to life-preserving actions in an end-of-life (EoL) context. We investigated GPs’ perspectives on this matter.Not all GPs involved in EoL home care adopt a “letting go” mindset. For those who do, this mindset is challenged by the erratic course of terminal illness.GPs prioritize the quality of the remaining life and the serenity of the dying process, which is threatened by disruptive medical events.Making the “right” decision is difficult. GPs feel uncertain about their own role and responsibility in deciding and negotiating the final step to life closure. PMID:26654583
Sercu, Maria; Renterghem, Veerle Van; Pype, Peter; Aelbrecht, Karolien; Derese, Anselme; Deveugele, Myriam
2015-01-01
Many general practitioners (GPs) are willing to provide end-of-life (EoL) home care for their patients. International research on GPs' approach to care in patients' final weeks of life showed a combination of palliative measures with life-preserving actions. To explore the GP's perspective on life-preserving versus "letting go" decision-making in EoL home care. Qualitative analysis of semi-structured interviews with 52 Belgian GPs involved in EoL home care. Nearly all GPs adopted a palliative approach and an accepting attitude towards death. The erratic course of terminal illness can challenge this approach. Disruptive medical events threaten the prospect of a peaceful end-phase and death at home and force the GP either to maintain the patient's (quality of) life for the time being or to recognize the event as a step to life closure and "letting the patient go". Making the "right" decision was very difficult. Influencing factors included: the nature and time of the crisis, a patient's clinical condition at the event itself, a GP's level of determination in deciding and negotiating "letting go" and the patient's/family's wishes and preparedness regarding this death. Hospitalization was often a way out. GPs regard alternation between palliation and life-preservation as part of palliative care. They feel uncertain about their mandate in deciding and negotiating the final step to life closure. A shortage of knowledge of (acute) palliative medicine as one cause of difficulties in letting-go decisions may be underestimated. Sharing all these professional responsibilities with the specialist palliative home care teams would lighten a GP's burden considerably. Key Points A late transition from a life-preserving mindset to one of "letting go" has been reported as a reason why physicians resort to life-preserving actions in an end-of-life (EoL) context. We investigated GPs' perspectives on this matter. Not all GPs involved in EoL home care adopt a "letting go" mindset. For those who do, this mindset is challenged by the erratic course of terminal illness. GPs prioritize the quality of the remaining life and the serenity of the dying process, which is threatened by disruptive medical events. Making the "right" decision is difficult. GPs feel uncertain about their own role and responsibility in deciding and negotiating the final step to life closure.
Lapostolle, A; Lefranc, A; Gremy, I; Spira, A
2008-08-01
For many years in France, premature mortality (i.e., deaths before 65 years old) and avoidable deaths have generally been used to monitor health of the population and help to elaborate policies in this area. This paper aims to examine the utility of another indicator of premature mortality, which makes it possible to take into account the impact of deaths, the expected years of life lost (EYLL). Mortality data for France in the years 2000 to 2002 were obtained from the Centre for Epidemiology of the Medical Causes of Death. Premature mortality was defined as death before 65 years of age. For the calculation of EYLL, the mortality norm chosen was French-life expectancy for the years 2001 to 2003. In order to study the spatial distribution of the indicators above defined, standardized ratios were calculated for each administrative area, taking France as the reference population. Irrespective of the gender and indicator considered, ranking of the causes emphasized three major groups of pathological conditions, which are strongly distinguished from the others: cardiovascular diseases, malignant neoplasm and injuries. The ranking of causes varied considerably according to the indicator used. The spatial representation of standardized ratios of expected years of life lost and deaths before 65 showed a strong North-South trend. The concept of premature mortality is difficult to define and discussions persist on the age limit to use for its quantification. The choice of an indicator strongly depends on the use which one wishes to make. The simple analysis of deaths before 65 years currently used to describe premature mortality in France makes it possible to describe its frequency. The use of a summary measure as EYLL allows to quantify the impact of premature mortality by giving different weights to deaths depending on the age of occurrence. EYLL, thus, seems to be an indicator, which is particularly adapted to decision-making in public health, depending on choices and values one wishes to give preference to.
Many faces of rationality: Implications of the great rationality debate for clinical decision‐making
Elqayam, Shira
2017-01-01
Abstract Given that more than 30% of healthcare costs are wasted on inappropriate care, suboptimal care is increasingly connected to the quality of medical decisions. It has been argued that personal decisions are the leading cause of death, and 80% of healthcare expenditures result from physicians' decisions. Therefore, improving healthcare necessitates improving medical decisions, ie, making decisions (more) rational. Drawing on writings from The Great Rationality Debate from the fields of philosophy, economics, and psychology, we identify core ingredients of rationality commonly encountered across various theoretical models. Rationality is typically classified under umbrella of normative (addressing the question how people “should” or “ought to” make their decisions) and descriptive theories of decision‐making (which portray how people actually make their decisions). Normative theories of rational thought of relevance to medicine include epistemic theories that direct practice of evidence‐based medicine and expected utility theory, which provides the basis for widely used clinical decision analyses. Descriptive theories of rationality of direct relevance to medical decision‐making include bounded rationality, argumentative theory of reasoning, adaptive rationality, dual processing model of rationality, regret‐based rationality, pragmatic/substantive rationality, and meta‐rationality. For the first time, we provide a review of wide range of theories and models of rationality. We showed that what is “rational” behaviour under one rationality theory may be irrational under the other theory. We also showed that context is of paramount importance to rationality and that no one model of rationality can possibly fit all contexts. We suggest that in context‐poor situations, such as policy decision‐making, normative theories based on expected utility informed by best research evidence may provide the optimal approach to medical decision‐making, whereas in the context‐rich circumstances other types of rationality, informed by human cognitive architecture and driven by intuition and emotions such as the aim to minimize regret, may provide better solution to the problem at hand. The choice of theory under which we operate is important as it determines both policy and our individual decision‐making. PMID:28730671
Student Participation in University Decision Making.
ERIC Educational Resources Information Center
Morris, Arval A.
The causes of student rebellion against established social and educational systems are rooted in many forces that impinge upon their lives, 3 of which are rapid social change, affluence, and the fear of technological death. The firm conviction of "new left" activists --the third generation of radical, militant students-- is that they must do…
Chattopadhyay, Subrata; Simon, Alfred
2008-06-01
Culture creates the context within which individuals experience life and comprehend moral meaning of illness, suffering and death. The ways the patient, family and the physician communicate and make decisions in the end-of-life care are profoundly influenced by culture. What is considered as right or wrong in the healthcare setting may depend on the socio-cultural context. The present article is intended to delve into the cross-cultural perspectives in ethical decision making in the end-of-life scenario. We attempt to address the dynamics of the roles of patient, family and physician therein across two countries from East and West, namely, India and Germany. In India, where illness is more a shared family affair than an individual incident, a physician is likely to respect the family's wishes and may withhold the [Symbol: see text]naked truth' about the diagnosis of a fatal disease to the patient. In Germany, a physician is legally required to inform the patient about the disease. In India, advance directive being virtually non-existent, the family acts as the locus of the decision-making process, taking into account the economic cost of available medical care. In Germany, advance directive is regarded as mandatory and healthcare is covered by insurance. Family and the physician appear to play larger roles in ethical decision making for patients in India than for those in Germany, who place greater emphasis on autonomy of the individual patient. Our study explicates how culture matters in ethical decision-making and why the bioethical discourse is necessary in the concrete realities of the socio-cultural context. To explore the possibility of finding a common ground of morality across different cultures while acknowledging and respecting cultural diversity, thus remains a formidable challenge for the bioethicists.
Rational decision making in medicine: Implications for overuse and underuse.
Djulbegovic, Benjamin; Elqayam, Shira; Dale, William
2018-06-01
In spite of substantial spending and resource utilization, today's health care remains characterized by poor outcomes, largely due to overuse (overtesting/overtreatment) or underuse (undertesting/undertreatment) of health services. To a significant extent, this is a consequence of low-quality decision making that appears to violate various rationality criteria. Such suboptimal decision making is considered a leading cause of death and is responsible for more than 80% of health expenses. In this paper, we address the issue of overuse or underuse of health care interventions from the perspective of rational choice theory. We show that what is considered rational under one decision theory may not be considered rational under a different theory. We posit that the questions and concerns regarding both underuse and overuse have to be addressed within a specific theoretical framework. The applicable rationality criterion, and thus the "appropriateness" of health care delivery choices, depends on theory selection that is appropriate to specific clinical situations. We provide a number of illustrations showing how the choice of theoretical framework influences both our policy and individual decision making. We also highlight the practical implications of our analysis for the current efforts to measure the quality of care and link such measurements to the financing of health care services. © 2017 The Authors. Journal of Evaluation in Clinical Practice Published by John Wiley & Sons Ltd.
Yang, Qing; Miller, Geoffrey
2015-06-01
The concept of brain death as equivalent to cardiopulmonary death was initially conceived following developments in neuroscience, critical care, and transplant technology. It is now a routine part of medicine in Western countries, including the United States. In contrast, Eastern countries have been reluctant to incorporate brain death into legislation and medical practice. Several countries, most notably China, still lack laws recognizing brain death and national medical standards for making the diagnosis. The perception is that Asians are less likely to approve of brain death or organ transplant from brain dead donors. Cultural and religious traditions have been referenced to explain this apparent difference. In the West, the status of the brain as home to the soul in Enlightenment philosophy, combined with pragmatism and utilitarianism, supports the concept of brain death. In the East, the integration of body with spirit and nature in Buddhist and folk beliefs, along with the Confucian social structure that builds upon interpersonal relationships, argues against brain death. However, it is unclear whether these reasoning strategies are explicitly used when families and medical providers are faced with acknowledging brain death. Their decisions are more likely to involve a prioritization of values and a rationalization of intuitive responses. Why and whether there might be differences between East and West in the acceptance of the brain death concept requires further empirical testing, which would help inform policy-making and facilitate communication between providers and patients from different cultural and ethnic backgrounds.
Inghelbrecht, Els; Bilsen, Johan; Mortier, Freddy; Deliens, Luc
2008-07-01
Although nurses play an important role in end-of-life care for patients, they are not systematically involved in end-of-life decisions with a possible or certain life-shortening effect (ELDs). Until now we know little about factors relating to the involvement of nurses in these decisions. To explore which patient- and decision-characteristics are related to the consultation of nurses and to the administering of life-ending drugs by nurses in actual ELDs in institutions and home care, as reported by physicians. We sampled at random 5005 of all registered deaths in the second half of 2001--before euthanasia was legalized--in Flanders, Belgium. We mailed anonymous questionnaires to physicians who signed the death certificates and asked them to report on ELDs, including nurses' involvement. Response rate was 59% (n=2950). Physicians reported nurses involved in decision making more often in institutions than at home, and more often in care homes for the elderly than in hospitals (OR 1.70, 95% CI 1.15, 2.52). This involvement was more frequently when physicians intended to hasten the patient's death than when they had no such intention (institutions: OR 2.05, 95% CI 1.41, 2.99; home: OR 2.04, 95% CI 1.19, 3.49). In institutions, this involvement was also more likely where patients were of lower rather than higher education (OR 2.95, 95% CI 1.49, 5.84). The administering of life-ending drugs by nurses, as reported by physicians was also found more frequently in institutions than at home, and in institutions more frequently with lower rather than higher educated patients (p=.037). These findings raise questions about physicians' perception of the nurse's role in ELDs, but also about physicians' skills in interacting with all patients. Education and guidelines for physicians and nurses are needed to optimize good communication and to promote a clearer assignment of responsibilities concerning the execution of those decisions.
Goldstein, Nathan E; Back, Anthony L; Morrison, R Sean
2008-09-08
Over the last century, developments in new medical treatments have led to an exponential increase in longevity, but, as a consequence, patients may be left with chronic illness associated with long-term severe functional and cognitive disability. Patients and their families are often forced to make a difficult and complex choice between death and long-term debility, neither of which is an acceptable outcome. Traditional models of medical decision making, however, do not fully address how clinicians should best assist with these decisions. Herein, we present a new paradigm that demonstrates how the role of the physician changes over time in response to the curved relationship between the predictability of a patient's outcome and the chance of returning to an acceptable quality of life. To translate this model into clinical practice, we propose a 5-step model for physicians with which they can (1) determine at which point the patient is on our model; (2) identify the cognitive factors and preferences for outcomes that affect the decision-making process of the patient and his or her family; (3) reflect on their own reaction to the decision at hand; (4) acknowledge how these factors can be addressed in conversation; and (5) guide the patient and his or her family in creating a plan of care. This model can help improve patient-physician communication and decision making so that complex and difficult decisions can be turned into ones that yield to medical expertise, good communication, and personal caring.
Advance directives and outcomes of surrogate decision making before death.
Silveira, Maria J; Kim, Scott Y H; Langa, Kenneth M
2010-04-01
Recent discussions about health care reform have raised questions regarding the value of advance directives. We used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making. Of 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care. Between 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives. 2010 Massachusetts Medical Society
Key factors affecting dying children and their families.
Hinds, Pamela S; Schum, Lisa; Baker, Justin N; Wolfe, Joanne
2005-01-01
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.
[Withdrawal of assisted ventilation in the home: making decisions in paediatric palliative care].
García-Salido, A; Monleón-Luque, M; Barceló-Escario, M; Del Rincón-Fernández, C; Catá-Del Palacio, E; Martino-Alba, Ricardo
2014-03-01
End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients. To adapt the treatment in order to avoid new hospital admissions and to obtain a better quality of life is a desirable objective. The taking of decisions and subsequent withdrawal of mechanical ventilation in the home is presented, along with the underlying disease and the acute event that led to the worsening of the patient. The decision-making and clinical management until the death of the patient is then discussed and reviewed. Copyright © 2013 Asociación Española de Pediatría. Published by Elsevier Espana. All rights reserved.
Hyslop, Brent
2017-09-01
Decision-making capacity is a vital concept in law, ethics, and clinical practice. Two legal cases where capacity literally had life and death significance are NHS Trust v Ms T [2004] and Kings College Hospital v C [2015]. These cases share another feature: unusual beliefs. This essay will critically assess the concept of capacity, particularly in relation to the unusual beliefs in these cases. Firstly, the interface between capacity and unusual beliefs will be examined. This will show that the "using and weighing of information" is the pivotal element in assessment. Next, this essay will explore the relationship between capacity assessment and a decision's "rationality." Then, in light of these findings, the essay will appraise the judgments in NHS v T and Kings v C, and consider these judgments' implications. More broadly, this essay asks: Does capacity assessment examine only the decision-making process (as the law states), or is it also influenced by a decision's rationality? If influenced by rationality, capacity assessment has the potential to become "a search and disable policy aimed at those who are differently orientated in the human life-world" (Gillett 2012, 233). In contentious cases like these, this potential deserves attention.
[Voluntary Refusal of Food and Fluid in palliative care: a mapping literature review].
Klein Remane, Ursula; Fringer, André
2013-12-01
Voluntary Refusal of Food and Fluid (VRFF) is one possibility for patients in palliative situations to hasten death and avoid further suffering. By means of a mapping literature review this article describes the medical, nursing, ethical and legal perspective of care for people who wish to hasten death using VRFF. The results show that the wish to die is affected by psychological, social, spiritual and physical factors. VRFF is a little-known, legal and independently viable method to hasten death. Reducing fluid intake to 40 ml daily, the dying process takes one to three weeks. VRFF can be regarded as a natural death, foregoing treatment or as suicide. In contrast to physician assisted suicide or euthanasia, patients dying by VRFF experience a "natural" dying process and the decision is reversible in the first few days. As authority to act lies with the person wishing to die professionals and family caring for the dying are practicing palliative care, as opposed to assisted suicide or euthanasia. Professionals and family involved in the decision-making process are confronted with various ethical problems. Further research concerning VRFF and its implications for practice is necessary.
Classification System for the Sudden Unexpected Infant Death Case Registry and its Application
Shapiro-Mendoza, Carrie K.; Camperlengo, Lena; Ludvigsen, Rebecca; Cottengim, Carri; Anderson, Robert N.; Andrew, Thomas; Covington, Theresa; Hauck, Fern R.; Kemp, James; MacDorman, Marian
2015-01-01
Sudden unexpected infant deaths (SUID) accounted for 1 in 3 postneonatal deaths in 2010. Sudden infant death syndrome and accidental sleep-related suffocation are among the most frequently reported types of SUID. The causes of these SUID usually are not obvious before a medico-legal investigation and may remain unexplained even after investigation. Lack of consistent investigation practices and an autopsy marker make it difficult to distinguish sudden infant death syndrome from other SUID. Standardized categories might assist in differentiating SUID subtypes and allow for more accurate monitoring of the magnitude of SUID, as well as an enhanced ability to characterize the highest risk groups. To capture information about the extent to which cases are thoroughly investigated and how factors like unsafe sleep may contribute to deaths, CDC created a multistate SUID Case Registry in 2009. As part of the registry, the Centers for Disease Control and Prevention developed a classification system that recognizes the uncertainty about how suffocation or asphyxiation may contribute to death and that accounts for unknown and incomplete information about the death scene and autopsy. This report describes the classification system, including its definitions and decision-making algorithm, and applies the system to 436 US SUID cases that occurred in 2011 and were reported to the registry. These categories, although not replacing official cause-of-death determinations, allow local and state programs to track SUID subtypes, creating a valuable tool to identify gaps in investigation and inform SUID reduction strategies. PMID:24913798
McIlvennan, Colleen K.; Allen, Larry A.; Nowels, Carolyn; Brieke, Andreas; Cleveland, Joseph C.; Matlock, Daniel D.
2014-01-01
Background Destination therapy left ventricular assist devices (DT LVAD) are one of the most invasive medical interventions for end-stage illness. How patients decide whether or not to proceed with device implantation is unknown. We aimed to understand the decision-making processes of patients who either accept or decline DT LVADs. Methods and Results Between October 2012–September 2013, we conducted semi-structured, in-depth interviews to understand patients’ decision-making experiences. Data were analyzed using a mixed inductive and deductive approach. Twenty-two eligible patients were interviewed, 15 with DT LVADs and 7 who declined. We found a strong dichotomy between decision processes with some patients (11 accepters) being “automatic” and others (3 accepters, 7 decliners) being “reflective” in their approach to decision making. The automatic group was characterized by a fear of dying and an overriding desire to live as long as possible: “[LVAD] was the only option I had…that or push up daisies…so I automatically took this”. In contrast, the reflective group went through a reasoned process of weighing risks, benefits, and burdens: “There are worse things than death.” Irrespective of approach, most patients experienced the DT LVAD decision as a highly emotional process and many sought support from their families or spiritually. Conclusion Some patients offered a DT LVAD face the decision by reflecting on a process and reasoning through risks and benefits. For others, the desire to live supersedes such reflective processing. Acknowledging this difference is important when considering how to support patients who are faced with this complex decision. PMID:24823949
McIlvennan, Colleen K; Allen, Larry A; Nowels, Carolyn; Brieke, Andreas; Cleveland, Joseph C; Matlock, Daniel D
2014-05-01
Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medical interventions for end-stage illness. How patients decide whether or not to proceed with device implantation is unknown. We aimed to understand the decision-making processes of patients who either accept or decline DT LVADs. Between October 2012 and September 2013, we conducted semistructured, in-depth interviews to understand patients' decision-making experiences. Data were analyzed using a mixed inductive and deductive approach. Twenty-two eligible patients were interviewed, 15 with DT LVADs and 7 who declined. We found a strong dichotomy between decision processes with some patients (11 accepters) being automatic and others (3 accepters, 7 decliners) being reflective in their approach to decision making. The automatic group was characterized by a fear of dying and an over-riding desire to live as long as possible: "[LVAD] was the only option I had…that or push up daisies…so I automatically took this." By contrast, the reflective group went through a reasoned process of weighing risks, benefits, and burdens: "There are worse things than death." Irrespective of approach, most patients experienced the DT LVAD decision as a highly emotional process and many sought support from their families or spiritually. Some patients offered a DT LVAD face the decision by reflecting on a process and reasoning through risks and benefits. For others, the desire to live supersedes such reflective processing. Acknowledging this difference is important when considering how to support patients who are faced with this complex decision. © 2014 American Heart Association, Inc.
Palliative Management of Malignant Bowel Obstruction in Terminally Ill Patient
Thaker, Darshit A; Stafford, Bruce C; Gaffney, Luke S
2010-01-01
Mr. P was a 57-year-old man who presented with symptoms of bowel obstruction in the setting of a known metastatic pancreatic cancer. Diagnosis of malignant bowel obstruction was made clinically and radiologically and he was treated conservatively (non-operatively)with octreotide, metoclopromide and dexamethasone, which provided good control over symptoms and allowed him to have quality time with family until he died few weeks later with liver failure. Bowel obstruction in patients with abdominal malignancy requires careful assessment. The patient and family should always be involved in decision making. The ultimate goals of palliative care (symptom management, quality of life and dignity of death) should never be forgotten during decision making for any patient. PMID:21811356
[Advance care planning and severe chronic diseases].
Diestre Ortín, Germán; González Sequero, Vanessa; Collell Domènech, Núria; Pérez López, Francisca; Hernando Robles, Pablo
2013-01-01
Advanced care planning (ACP) helps in make decisions on the health problems of people who have lost the capacity for informed consent. It has proven particularly useful in addressing the end of life. The aim of this study was to determine the prevalence of ACP in patients with severe chronic diseases. Review of medical records of patients with dementia, amyotrophic lateral sclerosis, Parkinson's disease, chronic obstructive pulmonary disease or interstitial lung disease, heart failure, chronic kidney disease on dialysis and cancer, all in advanced stages. We collected data on living wills or registered prior decisions by the physician according to clinical planned. A total of 135 patients were studied. There was a record of ACP in 22 patients (16.3%). In most of them it was planned not to start any vital treatment in the event of high risk of imminent death and lacking the ability to make decisions. Only two patients were had a legal living will. The registration of ACP is relatively low, and this can affect decision-making in accordance with the personal values of patients when they do not have the capacity to exercise informed consent. Copyright © 2012 SEGG. Published by Elsevier Espana. All rights reserved.
Schroeder, Julie; Guin, Cecile C; Pogue, Rene; Bordelon, Danna
2006-10-01
Providing an effective defense for individuals charged with capital crimes requires a diligent, thorough investigation by a mitigation specialist. However, research suggests that mitigation often plays a small role in the decision for life. Jurors often make sentencing decisions prematurely, basing those decisions on their personal reactions to the defendant (for example, fear, anger), their confusion about the rules of law, and their lack of understanding regarding their role and responsibilities. This article proposes an evidence-based conceptual model of the complicating problems surrounding mitigation practice and a focused discussion about how traditional social work mitigation strategies might be evolved to a set of best practices that more effectively ensure jurors' careful consideration of mitigation evidence.
Visser, Annemieke; Dijkstra, Geke J; Kuiper, Daphne; de Jong, Paul E; Franssen, Casper F M; Gansevoort, Ron T; Izaks, Gerbrand J; Jager, Kitty J; Reijneveld, Sijmen A
2009-01-01
Elderly patients with end-stage renal disease have to make a difficult decision whether or not to start dialysis. This study explores the considerations taken into account by these patients in decision-making regarding renal replacement therapy. In-depth interviews were conducted to gain an enhanced understanding of the considerations in treatment decision-making. Fourteen patients aged 65 years or older participated in the interviews, of whom 8 patients had made the decision to start, and 6 patients the decision to decline, dialysis. All participating patients had a variety of health problems, but appeared to have normal cognitive functions. Patients who declined dialysis were older and more often men and widow(er)s compared with patients who accepted dialysis. Patients chose to start dialysis because they enjoyed life, were not prepared to face the end of life, felt they had no other choice or had care-giving responsibilities for family members. Patients declined dialysis because of the speculated loss of autonomy, their age-associated decrease in vitality, distance from dialysis center and reluctance to think about the future. Results suggest that patients' decisions to decline or accept dialysis are not based on the effectiveness of the treatment, but rather on personal values, beliefs and feelings toward life, suffering and death, and the expected difficulties in fitting the treatment into their life.
Characterization of Death in Neonatal Encephalopathy in the Hypothermia Era.
Lemmon, Monica E; Boss, Renee D; Bonifacio, Sonia L; Foster-Barber, Audrey; Barkovich, A James; Glass, Hannah C
2017-03-01
This study aimed to characterize the circumstances of death in encephalopathic neonates treated with therapeutic hypothermia. Patients who died after or during treatment with therapeutic hypothermia between 2007-2014 were identified. Patient circumstance of death was characterized using an established paradigm. Thirty-one of 229 patients died (14%) at a median of 3 days of life. Most who died were severely encephalopathic on examination (90%) and had severely abnormal electroencephalographic (EEG) findings (87%). All those who had magnetic resonance images (n = 13) had evidence of moderate-severe brain injury; 6 had near-total brain injury. Cooling was discontinued prematurely in 61% of patients. Most patients (90%) were physiologically stable at the time of death; 81% died following elective extubation for quality of life considerations. Three patients (10%) died following withholding or removal of artificial hydration and nutrition. Characterization of death in additional cohorts is needed to identify differences in decision making practices over time and between centers.
Prostate cancer decision-making, health services, and the family physician workforce.
Bowman, Marjorie A; Neale, Anne Victoria
2012-01-01
Does untreated cancer equal death? Does having a registered nurse versus a licensed practical nurse versus a medical assistant affect diabetes quality outcomes? Do physicians caring for stressed patients experience vicarious traumatic stress? Oregon presents an operationalized definition of a patient-centered medical home for their state. Lots of important clinical topics in family medicine--adult attention deficit disorder office questionnaire; Bell palsy; cancer screening and treatment decisions; lubrication during Papanicolaou testing; changes in maternity care training by residencies; changing prescribing patterns for thiazide diuretics; and night sweats remain a mystery.
Aeronautical Decision Making for Instrument Pilots.
1987-05-01
psychological stressors. o Sociological stressors include: a death in the family, divorce, sick child , demotion or pressure from your boss. Sociological...Error, Editors of Flying Weather Flying, Robert Buck Illusions, Richard Bach " The Bush Pilot Syndrome ," Dr. Michael Mitchell Briefs of Accidents, National... The Impulsivity Hazardous Attitude...........................35 The Invulnerability Hazardous Attitude ................. .... 37 The Macho Hazardous
The Effect of Computer-Based Simulation Training on Fire Ground Incident Commander Decision Making
ERIC Educational Resources Information Center
Hall, Kurt A.
2010-01-01
Since the establishment of the first volunteer fire brigades in the United States, firefighters have lost their lives in fire fighting operations at emergency incidents and live-fire training activities. While there are various reasons for these firefighter deaths and injuries, the United States Fire Administration (2002) reported that many of…
French, Kelley Benham
2017-06-01
Parents and doctors look at a baby from fundamentally different perspectives. Every prognosis expands or contracts a universe for a doctor or a parent. When the clinician and the parent come together to make a life-and-death decision, language matters. Copyright © 2017 Elsevier Inc. All rights reserved.
Sowing seeds: transperineal implantation.
Amerine, E; Nagle, G M; Bollinger, J R
2000-02-01
Prostate cancer, the second leading cause of male deaths in the United States, has increased by 126% since 1987 (Stephenson, 1998). Early diagnosis is attributed to public awareness and technologic advances. Multiple options for definitive treatment with equally positive outcomes dramatically influence the patient's decision-making process. One popular option for these patients is transperineal implantation of radioactive seeds into the prostate.
Cohen, J; van Delden, J; Mortier, F; Löfmark, R; Norup, M; Cartwright, C; Faisst, K; Canova, C; Onwuteaka-Philipsen, B; Bilsen, J
2008-04-01
To examine how physicians' life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large life-stance groups in each country. Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient's death (PAD), physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics (up to 15.7% in The Netherlands) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations.
Decision-making in end of life care. Are we really playing together in the same team?
Lomero-Martínez, M M; Jiménez-Herrera, M F; Bodí-Saera, M A; Llauradó-Serra, M; Masnou-Burrallo, N; Oliver-Juan, E; Sandiumenge-Camps, A
2018-05-18
Limitation of life-sustaining treatment is increasingly common in critical care units, and controlled donation after circulatory death is starting to be included as an option within patient care plans. Lack of knowledge and misunderstandings can place a barrier between healthcare professionals. To determine the perceptions, knowledge and attitudes of physicians and nurses working in intensive care units regarding Limitation of life-sustaining treatment and controlled donation after circulatory death. Cross-sectional study carried out in 13 Spanish hospitals by means of an ad hoc questionnaire. Contingency tables, Pearson's chi-squared test, Student's t-test and the Mann-Whitney u-test were used to carry out descriptive, bivariate and multivariate statistical analyses of responses. Although Limitation of life-sustaining treatment is a widespread practice, the survey revealed that nurses feel excluded from the development of protocols and the decision-making process, whilst the perception of physicians is that they have greater knowledge of the topic, and decisions are reached in consensus. Multi-disciplinary training programmes can help critical healthcare providers to work together with greater coordination, thus benefitting patients and their next of kin by providing excellent end-of-life care. Copyright © 2018 Sociedad Española de Enfermería Intensiva y Unidades Coronarias (SEEIUC). Publicado por Elsevier España, S.L.U. All rights reserved.
[The decision making process of ESRD families during the dialysis withdrawal period].
Lin, Tsai-Rung
2011-08-01
Hemodialysis is a financial burden to the state and families and the cause of much suffering in patients. It is a life prolonging therapy and death-delaying treatment. When the burdens of therapy substantially outweigh its benefits, withdrawal from dialysis is an appropriate option. However, considering the ethical and legal concerns of doing such is something families must face. There has been little research and little understanding of the process of decision-making within families in Taiwan. The process is full of conflicts, worries, guilt, shame, and lack of consensus. Effective communication with the medical team to resolve the conflict and describe the prognosis is necessary in order to reach a consensus and move toward palliative care. The article uses a case report and discusses the process. Finally, the author suggests an approach to making the situation better in the future.
A political economy analysis of decision-making on natural disaster preparedness in Kenya.
Rono-Bett, Karen C
2018-01-01
Most deaths from natural disasters occur in low- or middle-income countries; among them, countries in the Horn of Africa - where Kenya lies. Between September 2015 and September 2016, 23.4 million people in this region faced food insecurity because of the 2015 El Niño, characterised by floods and droughts. The importance of effective government decision-making on preparedness and response are critical to saving lives during such disasters. But this decision-making process occurs in a political context which is marred by uncertainty with other factors at play. Yet, good practice requires making investments on a 'no-regrets' basis. This article looks at the factors influencing Kenya's decision-making process for natural disasters, the preparedness for the 2015 El Niño as a case study. I explored what stakeholders understand by 'no-regrets investments' and its application. I assessed financial allocations by government and donors to disaster preparedness. Based on key informant interviews, focus group discussions and financial analyses, this article presents evidence at national and subnational levels. The findings indicate that in making decisions relating to preparedness, the government seeks information primarily from sources it trusts - other government departments, its communities and the media. With no existing legal frameworks guiding Kenya's disaster preparedness, the coordination of preparedness is not strong. It appears that there is a lack of political will to prioritise these frameworks. The no-regrets approach is applied predominantly by non-state actors. Because there have been 'non-events' in the past, government has become overcautious in committing resources on a no-regrets basis. Government allocation to preparedness exceeds donor funding by almost tenfold.
Uramatsu, Masashi; Fujisawa, Yoshikazu; Mizuno, Shinya; Souma, Takahiro; Komatsubara, Akinori; Miki, Tamotsu
2017-01-01
Objectives We sought to clarify how large a proportion of fatal medical accidents can be considered to be caused by poor non-technical skills, and to support development of a policy to reduce number of such accidents by making recommendations about possible training requirements. Design Summaries of reports of fatal medical accidents, published by the Japan Medical Safety Research Organization, were reviewed individually. Three experienced clinicians and one patient safety expert conducted the reviews to determine the cause of death. Views of the patient safety expert were given additional weight in the overall determination. Setting A total of 73 summary reports of fatal medical accidents were reviewed. These reports had been submitted by healthcare organisations across Japan to the Japan Medical Safety Research Organization between April 2010 and March 2013. Primary and secondary outcome measures The cause of death in fatal medical accidents, categorised into technical skills, non-technical skills and inevitable progress of disease were evaluated. Non-technical skills were further subdivided into situation awareness, decision making, communication, team working, leadership, managing stress and coping with fatigue. Results Overall, the cause of death was identified as non-technical skills in 34 cases (46.6%), disease progression in 33 cases (45.2%) and technical skills in two cases (5.5%). In two cases, no consensual determination could be achieved. Further categorisation of cases of non-technical skills were identified as 14 cases (41.2%) of problems with situation awareness, eight (23.5%) with team working and three (8.8%) with decision making. These three subcategories, or combinations of them, were identified as the cause of death in 33 cases (97.1%). Conclusions Poor non-technical skills were considered to be a significant cause of adverse events in nearly half of the fatal medical accidents examined. Improving non-technical skills may be effective for reducing accidents, and training in particular subcategories of non-technical skills may be especially relevant. PMID:28209605
End-of-life care decisions in the pediatric intensive care unit: roles professionals play
Michelson, Kelly Nicole; Patel, Rachna; Haber-Barker, Natalie; Emanuel, Linda; Frader, Joel
2014-01-01
Objective Describe the roles and respective responsibilities of pediatric intensive care unit (PICU) health care professionals (HCPs) in end-of-life care decisions faced by PICU parents. Design Retrospective qualitative study Setting University based tertiary care children’s hospital Participants Eighteen parents of children who died in the PICU and 48 PICU HCPs (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). Interventions In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. Measurements and Main Results We identified end-of-life care decisions that parents face based on descriptions by parents and HCPs. Participants described medical and non-medical decisions addressed toward the end of a child’s life. From the descriptions, we identified seven roles HCPs play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to HCPs. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents’ understanding. The general care coordinator helps facilitate interactions among HCPs in the PICU, among HCPs from different subspecialty teams, and between HCPs and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during and after dying/death. The point person develops a unique trusting relationship with parents. Conclusions Our results describe a framework for HCPs’ roles in parental end-of-life care decision making in the PICU that includes directive, value-neutral and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these roles during the decision-making process could improve parents’ experiences at the end of a child’s life. PMID:23249788
Chambaere, Kenneth; Bilsen, Johan; Cohen, Joachim; Pousset, Geert; Onwuteaka-Philipsen, Bregje; Mortier, Freddy; Deliens, Luc
2008-01-01
Background Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue. This article presents the protocol drafted for the 2007 ELD Study in Flanders, Belgium, and outlines how the main aims and challenges of the study (i.e. making reliable incidence estimates of end-of-life decisions, even rare ones, and describing their characteristics; allowing comparability with past ELD studies; guaranteeing strict anonymity given the sensitive nature of the research topic; and attaining a sufficient response rate) are addressed in a post-mortem survey using a representative sample of death certificates. Study design Reliable incidence estimates are achievable by using large at random samples of death certificates of deceased persons in Flanders (aged one year or older). This entails the cooperation of the appropriate administrative authorities. To further ensure the reliability of the estimates and descriptions, especially of less prevalent end-of-life decisions (e.g. euthanasia), a stratified sample is drawn. A questionnaire is sent out to the certifying physician of each death sampled. The questionnaire, tested thoroughly and avoiding emotionally charged terms is based largely on questions that have been validated in previous national and European ELD studies. Anonymity of both patient and physician is guaranteed through a rigorous procedure, involving a lawyer as intermediary between responding physicians and researchers. To increase response we follow the Total Design Method (TDM) with a maximum of three follow-up mailings. Also, a non-response survey is conducted to gain insight into the reasons for lack of response. Discussion The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions. There are however also some limitations to the study design. PMID:18752659
Keeping all options open: Parents' approaches to advance care planning.
Beecham, Emma; Oostendorp, Linda; Crocker, Joanna; Kelly, Paula; Dinsdale, Andrew; Hemsley, June; Russell, Jessica; Jones, Louise; Bluebond-Langner, Myra
2017-08-01
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. To investigate how parents of children and young people with LLCs approach and experience ACP. Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made. Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so. This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely. © 2016 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Family Matters: Effects of Birth Order, Culture, and Family Dynamics on Surrogate Decision Making
Su, Christopher T.; McMahan, Ryan D.; Williams, Brie A.; Sharma, Rashmi K.; Sudore, Rebecca L.
2014-01-01
Cultural attitudes about medical decision making and filial expectations may lead some surrogates to experience stress and family conflict. Thirteen focus groups with racially and ethnically diverse English- and Spanish-speakers from county and Veterans hospitals, senior centers, and cancer support groups were conducted to describe participants’ experiences making serious or end-of-life decisions for others. Filial expectations and family dynamics related to birth order and surrogate decision making were explored using qualitative, thematic content analysis and overarching themes from focus group transcripts were identified. The mean age of the 69 participants was 69 years ± 14 and 29% were African American, 26% were White, 26% were Asian/Pacific Islander, and 19% were Latino. Seventy percent of participants engaged in unprompted discussions about birth order and family dynamics. Six subthemes were identified within 3 overarching categories of communication, emotion, and conflict: Communication – (1) unspoken expectations and (2) discussion of death as taboo; Emotion – (3) emotional stress and (4) feelings of loneliness; and Conflict – (5) family conflict and (6) potential solutions to prevent conflict. These findings suggest that birth order and family dynamics can have profound effects on surrogate stress and coping. Clinicians should be aware of potential unspoken filial expectations for firstborns and help facilitate communication between the patient, surrogate, and extended family to reduce stress and conflict. PMID:24383459
Family matters: effects of birth order, culture, and family dynamics on surrogate decision-making.
Su, Christopher T; McMahan, Ryan D; Williams, Brie A; Sharma, Rashmi K; Sudore, Rebecca L
2014-01-01
Cultural attitudes about medical decision-making and filial expectations may lead some surrogates to experience stress and family conflict. Thirteen focus groups with racially and ethnically diverse English and Spanish speakers from county and Veterans Affairs hospitals, senior centers, and cancer support groups were conducted to describe participants' experiences making serious or end-of-life decisions for others. Filial expectations and family dynamics related to birth order and surrogate decision-making were explored using qualitative, thematic content analysis, and overarching themes from focus group transcripts were identified. The mean age of the 69 participants was 69 ± 14, and 29% were African American, 26% were white, 26% were Asian or Pacific Islander, and 19% were Latino. Seventy percent of participants engaged in unprompted discussions about birth order and family dynamics. Six subthemes were identified within three overarching categories: communication (unspoken expectations and discussion of death as taboo), emotion (emotional stress and feelings of loneliness), and conflict (family conflict and potential solutions to prevent conflict). These findings suggest that birth order and family dynamics can have profound effects on surrogate stress and coping. Clinicians should be aware of potential unspoken filial expectations for firstborns and help facilitate communication between the patient, surrogate, and extended family to reduce stress and conflict. © Published 2013. This article is a U.S. Government work and is in the public domain in the U.S.A.
Vergano, Marco; Magavern, Emma; Baroncelli, Francesca; Frisenda, Valeria; Fonsato, Alessia; Artusio, Diego; Castioni, Carlo Alberto; De Piero, Maria Elena; Abelli, Massimo; Ticozzelli, Elena; Livigni, Sergio
2017-04-01
Donation after circulatory death (DCD) is a valuable option for the procurement of organs for transplantation. In Italy, organ procurement after controlled DCD is legally and ethically conceivable within the current legislative framework. However, although formal impediments do not exist, the health care team is faced with many obstacles that may hinder the implementation of such programs. We report the case of Italy's first controlled DCD, specifically discussing the role of the patient's family in the shared decision-making process. In our case, the death of the patient subsequent to the withdrawal of life-sustaining therapies was consistent with the patient's wishes, showing respect for his dignity and honoring his autonomy, as expressed to his family previously. By making donation possible, the medical team was able to fulfill the family's last request on behalf of the patient. This case should stimulate deliberation regarding the potential to shorten the 20-minute no-touch period currently in place in Italy. Such an action would not have injured this patient and would certainly have increased the quality of the procured organs. Copyright © 2016 Elsevier Inc. All rights reserved.
ERIC Educational Resources Information Center
Goetz, William Clark
2013-01-01
Rural Kentucky residents suffer twice as many fire residential deaths than the national average. Fire prevention programs are primarily aimed at elementary school children however these children do not make the decisions nor take the precautions necessary to alter these conditions; their adult parents do. There is little research into the…
Decision making in the neonatal intensive care environment.
Rivers, R P
1996-04-01
Consideration as to whether withdrawal of intensive care support might be a more appropriate line of action than to continue with full intensive care has become a part of the life and death decision making process undertaken in neonatal intensive care units. After outlining the moral objectives of delivery of health care, the arguments for taking quality of life and its various components into account during these deliberations are presented. The circumstances in which the appropriateness of continuing care should be considered are highlighted and the care options presented. The crucial importance of allowing time for parents to come to terms with the situation is emphasised as is the need for giving clear guidelines to junior staff over resuscitation issues. Finally, an environment for providing optimal family support during the process of withdrawal is suggested.
White, Ben; Willmott, Lindy; Allen, John
2010-05-01
The law recognises the right of a competent adult to refuse medical treatment even if this will lead to death. Guardianship and other legislation also facilitates the making of decisions to withhold or withdraw life-sustaining treatment in certain circumstances. Despite this apparent endorsement that such decisions can be lawful, doubts have been raised in Queensland about whether decisions to withhold or withdraw life-sustaining treatment would contravene the criminal law, and particularly the duty imposed by the Criminal Code (Qld) to provide the "necessaries of life". This article considers this tension in the law and examines various arguments that might allow for such decisions to be made lawfully. It ultimately concludes, however, that criminal responsibility may still arise and so reform is needed.
Vess, Matthew; Arndt, Jamie; Cox, Cathy R; Routledge, Clay; Goldenberg, Jamie L
2009-08-01
Decisions to rely on religious faith over medical treatment for health conditions represent an important but understudied phenomenon. In an effort to understand some of the psychological underpinnings of such decisions, the present research builds from terror management theory to examine whether reminders of death motivate individuals strongly invested in a religious worldview (i.e., fundamentalists) to rely on religious beliefs when making medical decisions. The results showed that heightened concerns about mortality led those high in religious fundamentalism to express greater endorsement of prayer as a medical substitute (Study 1) and to perceive prayer as a more effective medical treatment (Study 2). Similarly, high fundamentalists were more supportive of religiously motivated medical refusals (Study 3) and reported an increased willingness to rely on faith alone for medical treatment (Study 4) following reminders of death. Finally, affirmations of the legitimacy of divine intervention in health contexts functioned to solidify a sense of existential meaning among fundamentalists who were reminded of personal mortality (Study 5). The existential importance of religious faith and the health-relevant implications of these findings are discussed.
Solomon, Louis M; Noll, Rebekka C
2008-06-01
End-of-life decisions are among the most difficult to make or study. When we examined these decisions made under the auspices and protection of stringent state laws, we found no gender bias among patients who chose to end their lives in the face of documented debilitating and terminal diseases. However, in the case of euthanasia as practiced by Jack Kevorkian, we found significant statistical bias against women. Moreover, other data have questioned whether all of Kevorkian's patients did, in fact, have debilitating and terminal illnesses. In this article, we explore why a gender disparity exists in end-of-life decision making. We conclude that if physician-assisted suicide and euthanasia are to be integrated into any end-of-life medical care policy, stringent legal and medical safeguards will be required. Institution of these safeguards should prevent selection bias in a vulnerable population hastening death for reasons other than medically justifiable conditions or issues of individual autonomy, and should ensure that end-of-life decisions are truly reflective of competent personal choice, free from economic considerations or societal pressure.
Petrova, Dafina; Garcia-Retamero, Rocio; Catena, Andrés; Cokely, Edward; Heredia Carrasco, Ana; Arrebola Moreno, Antonio; Ramírez Hernández, José Antonio
2017-04-01
Many patients delay seeking medical attention during acute coronary syndromes (ACS), profoundly increasing their risk for death and major disability. Although research has identified several risk factors, efforts to improve patient decision making have generally been unsuccessful, prompting a call for more research into psychological factors. The purpose of this study is to estimate the relationship between ACS decision delay and numeracy, a factor closely related to general decision making skill and risk literacy. About 5 days after experiencing ACS, 102 survivors (mean age = 58, 32-74) completed a questionnaire including measures of numeracy, decision delay, and other relevant factors (e.g., anxiety, depression, symptom severity, knowledge, demographics). Low patient numeracy was related to longer decision delay, OR = 0.64 [95 % confidence interval (CI) 0.44, 0.92], which was in turn related to higher odds of positive troponin on arrival at the hospital, OR = 1.37 [95 % CI 1.01, 2.01]. Independent of the influence of all other assessed factors, a patient with high (vs. low) numeracy was about four times more likely to seek medical attention within the critical first hour after symptom onset (i.e., OR high-low = 3.84 [1.127, 11.65]). Numeracy may be one of the largest decision delay risk factors identified to date. Results accord with theories emphasizing potentially pivotal roles of patient deliberation, denial, and outcome understanding during decision making. Findings suggest that brief numeracy assessments may predict which patients are at greater risk for life-threatening decision delay and may also facilitate the design of risk communications that are appropriate for diverse patients who vary in risk literacy.
Song, Mi-Kyung; Ward, Sandra E; Fine, Jason P; Hanson, Laura C; Lin, Feng-Chang; Hladik, Gerald A; Hamilton, Jill B; Bridgman, Jessica C
2015-11-01
Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β=-0.01; 95% CI, -0.12 to 0.10). 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β=-1.13; 95% CI, -2.23 to -0.03), depression (β=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β=-5.75; 95% CI, -10.9 to -0.64) than controls. Study was conducted in a single US region. SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes. Copyright © 2015 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.
Dupont-Thibodeau, Amélie; Langevin, Rosalie; Janvier, Annie
2014-11-01
Technological and clinical advances have reduced neonatal deaths, and this study explored how the mode and timing of neonatal deaths has changed in a tertiary neonatal intensive care unit (NICU) over 10 years. We carried out a retrospective chart review on NICU deaths in 2000-2002 and 2007-2010, categorising deaths and compared the timing, cause and mode of death in the two cohorts. We analysed 204 neonatal deaths and found that the average age at death doubled from 9.71 days in 2000-2002 to 18.8 days (p = 0.014) in 2007-2010 and that the number of deaths in the first 48 h of life fell from 52% to 29% (p < 0.001). Mode of death and ethical decision-making was similar. In both cohorts, 26% of patients who died had a do not resuscitate order and 9% of the 151 patients without an order died while receiving cardiopulmonary resuscitation. Most neonates received medication to keep them comfortable and their use was similar in both cohorts. Changes in neonatal management have led to a reduction in early deaths and an increase in age at death. The impact of later deaths on families and healthcare providers deserves further research. ©2014 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
SYMPTOM AND FUNCTIONAL TRAITS OF BRIEF MAJOR DEPRESSIVE EPISODES AND DISCRIMINATION OF BEREAVEMENT.
McCabe, Patrick J; Christopher, Paul P
2016-02-01
Despite the removal of the bereavement exclusion from DSM-5, clinicians may feel uncertain on how to proceed when caring for a patient who presents with depressive symptoms following the death of someone close. The ability to better distinguish, on a symptom and functional level, between patients who experience depression in the context of bereavement and those with nonbereavement-related depression, could help guide clinical decision making. Individual and clustered depressive symptom and impairment measures were used for modeling bereavement status within a nationally representative longitudinal cohort. Deviance, linear shrinkage factor, and bias-corrected c-statistic were used for identifying a well-calibrated and discriminating final model. Of the 450 (1.2%) respondents with a single brief major depressive episode, 162 (38.4%) reported the episode as bereavement-related. The bereaved were less likely to endorse worthlessness (P < .001), social conflict (P < .001), distress (P < .001), thoughts of suicide (P = .001), wanting to die (P = .01), self-medicating (P = .01), and being withdrawn (P = .04). In a multivariate model, the bereaved were more likely to have thoughts of their own death (P = .003), guilt coupled with weight or appetite loss (P = .013), and were less likely to report social conflict (P < .001), worthlessness coupled with difficulty making decisions (P < .001), thoughts of suicide (P = .006), distress coupled with weight or appetite gain (P = .022), and self-medicating (P = .045). Traits and trait combinations differentiate individuals who experience brief depressive episodes following the death of a loved one from other brief episodes. These differences can help guide clinical care of patients who present with depressive symptoms shortly after a loved one's death. © 2015 Wiley Periodicals, Inc.
Visual Aids for Improving Patient Decision Making in Severe Symptomatic Carotid Stenosis.
Fridman, Sebastian; Saposnik, Gustavo; Sposato, Luciano A
2017-12-01
Because of the large amount of information to process and the limited time of a clinical consult, choosing between carotid endarterectomy (CEA) and carotid angioplasty with stenting (CAS) can be confusing for patients with severe symptomatic internal carotid stenosis (ICA). We aim to develop a visual aid tool to help clinicians and patients in the decision-making process of selecting between CEA and CAS. Based on pooled analysis from randomized controlled trials including patients with symptomatic and severe ICA (SSICA), we generated visual plots comparing CEA with CAS for 3 prespecified postprocedural time points: (1) any stroke or death at 4 months, and (2) any stroke or death in the first 30 days and ipsilateral stroke thereafter at 5 years and (3) at 10 years. A total of 4574 participants (2393 assigned to CAS, and 2361 to CEA) were included in the analyses. For every 100 patients with SSICA, 6 would develop any stroke or death in the CEA group compared with 9 undergoing CAS at 4 months (hazard ratio [HR] 1.53; 95%CI 1.20-1.95). At 5 years, 7 patients in the CEA group would develop any periprocedural stroke or death and ipsilateral stroke thereafter versus 12 undergoing CAS (HR 1.72; 95%CI 1.24-2.39), compared with 10 patients in the CEA and 13 in the CAS groups at 10 years (HR 1.17; 95%CI 0.82-1.66). Visual aids presented in this study could potentially help patients with severe symptomatic internal carotid stenosis to better weigh the risks and benefits of CEA versus CAS as a function of time, allowing for the prioritization of personal preferences, and should be prospectively assessed. Copyright © 2017 National Stroke Association. Published by Elsevier Inc. All rights reserved.
Palliative sedation: a focus group study on the experiences of relatives.
Bruinsma, Sophie; Rietjens, Judith; van der Heide, Agnes
2013-04-01
Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes. The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation. Focus groups and individual interviews. Various care settings in the Netherlands. A total of 14 relatives of patients who received palliative sedation until death participated. Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of "hastening death" as disadvantages of palliative sedation. Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general.
Buddhist ethics and end-of-life care decisions.
McCormick, Andrew J
2013-01-01
Buddhism has grown in the United States in the past 50 years. Immigrants come following long traditions. American converts are more eclectic. The first Buddhist precept prohibiting harm to living things, the virtue of compassion, and the goal of a peaceful death provide guidance for ethical decision making regarding organ donation, withholding and withdrawing life-sustaining treatment, voluntary cessation of eating, physician aid in dying, and euthanasia. Concepts and views from three Buddhist traditions and views of master practitioners are presented. Case examples illustrate some of the differences within Buddhism. Suggestions for social workers are provided.
Adjuvant Treatment for Older Women with Invasive Breast Cancer
Jolly, Trevor A; Williams, Grant R; Bushan, Sita; Pergolotti, Mackenzi; Nyrop, Kirsten A; Jones, Ellen L; Muss, Hyman B
2016-01-01
Older women experience a large share of breast cancer incidence and death. With the projected rise in the number of older cancer patients, adjuvant chemo-, radiation and endocrine therapy management will become a key component of breast cancer treatment in older women. Many factors influence adjuvant treatment decisions including patient preferences, life expectancy and tumor biology. Geriatric assessment predicts important outcomes, identifies key deficits, and can aid in the decision making process. This review utilizes clinical vignettes to illustrate core principles in adjuvant management of breast cancer in older women and suggests an approach incorporating life expectancy and geriatric assessment. PMID:26767315
Factors associated with family satisfaction with end-of-life care in the ICU: a systematic review.
Hinkle, Laura J; Bosslet, Gabriel T; Torke, Alexia M
2015-01-01
Family satisfaction with end-of-life care in the ICU has not previously been systematically reviewed. Our objective was to perform a review, synthesizing published data identifying factors associated with family satisfaction with end-of-life care in critically ill adult populations. The following electronic databases were searched: MEDLINE (Medical Literature Analysis and Retrieval System Online), MEDLINE Updated, EMBASE (Excerpta Medical Database), CINAHL (Cumulative Index to Nursing and Allied Health Literature), PsycInfo, and PubMed. Two authors reviewed retrieved titles and abstracts. Studies describing nonadult and non-ICU populations or not addressing end-of-life care, family satisfaction, or factors affecting satisfaction were excluded. The remaining articles underwent full review and data extraction by two authors. Quality was assessed using a checklist based on the recommendations of the Consolidated Standards for Reporting Trials group. The search yielded 1,072 articles, with 23 articles describing 14 studies meeting inclusion criteria. All studies obtained satisfaction data from family members via surveys and structured interviews. Specific communication strategies increasing satisfaction included: expressions of empathy, nonabandonment, and assurances of comfort and provision of written information. Additionally, support for shared decision-making, family presence at time of death, and specific patient-care measures such as extubation before death were associated with increased satisfaction. Good-quality communication, support for shared decision-making, and specific patient-care measures were associated with increased satisfaction with end-of-life care. Assessing the family's desire to participate in shared decision-making may also be an important factor. Few interventions increased satisfaction. Future research is needed to further define optimal communication strategies, understand effective integration of palliative care into the ICU, and define significant score changes in survey instruments.
Song, Mi-Kyung; Ward, Sandra E; Lin, Feng-Chang; Hamilton, Jill B; Hanson, Laura C; Hladik, Gerald A; Fine, Jason P
2016-02-01
African Americans' beliefs about end-of-life care may differ from those of whites, but racial differences in advance care planning (ACP) outcomes are unknown. The aim of this study was to compare the efficacy of an ACP intervention on preparation for end-of-life decision making and post-bereavement outcomes for African Americans and whites on dialysis. A secondary analysis of data from a randomized trial comparing an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) with usual care was conducted. There were 420 participants, 210 patient-surrogate dyads (67.4% African Americans), recruited from 20 dialysis centers in North Carolina. The outcomes of preparation for end-of-life decision making included dyad congruence on goals of care, surrogate decision-making confidence, a composite of the two, and patient decisional conflict assessed at 2, 6, and 12 months post-intervention. Surrogate bereavement outcomes included anxiety, depression, and post-traumatic distress symptoms assessed at 2 weeks, and at 3 and 6 months after the patient's death. SPIRIT was superior to usual care in improving dyad congruence (odds ration [OR] = 2.31, p = 0.018), surrogate decision-making confidence (β = 0.18, p = 0.021), and the composite (OR = 2.19, p = 0.028) 2 months post-intervention, but only for African Americans. SPIRIT reduced patient decisional conflict at 6 months for whites and at 12 months for African Americans. Finally, SPIRIT was superior to usual care in reducing surrogates' bereavement depressive symptoms for African Americans but not for whites (β = -3.49, p = 0.003). SPIRIT was effective in improving preparation for end-of-life decision-making and post-bereavement outcomes in African Americans.
[Bioethics in end-of-life decisions in neonatology: Unresolved issues].
Arnaez, Juan; Tejedor, Juan Carlos; Caserío, Sonia; Montes, María Teresa; Moral, María Teresa; González de Dios, Javier; García-Alix, Alfredo
2017-12-01
This document is the result of previous work carried out by different expert groups and submitted to multidisciplinary debate at a Conference about controversial, deficient, or new aspects in the field of neonatal palliative care, such as: 1) the deliberative decision-making process, 2) hospital and domiciliary palliative care, 3) donation after controlled cardiac death, and 4) moral stress in professionals. The most relevant conclusions were: the need to instruct professionals in bioethics and in the deliberative method to facilitate thorough and reasonable decision-making; the lack of development in the field of perinatal palliative care and domiciliary palliative care in hospitals that attend newborns; the need to provide neonatal units with resources that help train professionals in communication skills and in the management of moral distress, as well as delineate operational procedure and guidelines for neonatal organ donation. Copyright © 2017 Asociación Española de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.
Addressing Consent Issues in Donation After Circulatory Determination of Death.
Overby, Kim J; Weinstein, Michael S; Fiester, Autumn
2015-01-01
Given the widening gap between the number of individuals on transplant waiting lists and the availability of donated organs, as well as the recent plateau in donations based on neurological criteria (i.e., brain death), there has been a growing interest in expanding donation after circulatory determination of death. While the prevalence of this form of organ donation continues to increase, many thorny ethical issues remain, often creating moral distress in both clinicians and families. In this article, we address one of these issues, namely, the challenges surrounding patient and surrogate informed consent for donation after circulatory determination of death. First we discuss several general concerns regarding consent related to this form of organ donation, and then we address additional issues that are unique to three different patient categories: adult patients with medical decision-making capacity or potential capacity, adult patients who lack capacity, and pediatric patients.
Discussion of death and dying in surgical textbooks.
Easson, A M; Crosby, J A; Librach, S L
2001-07-01
Quality end-of-life care is an increasing concern for the public and the medical profession. Surgical textbooks could serve as an important educational and reference resource to improve this care. Four general surgical textbooks were scored for helpful information on death and dying for eight surgical diseases. For each disease, nine content domains related to care of the dying patient were evaluated. Three texts included a chapter on cancer that was evaluated separately. Disease epidemiology, prognosis/prevention, progression, and medical interventions were generally well discussed in all textbooks. However, little helpful information was provided with regards to breaking bad news/advanced care planning, mode of death, treatment decision-making, effect on family/surgeon, and symptom management. Cancer chapters also addressed only a few of these concerns. Death and the dying patient are sufficiently frequent in surgical practice that it would be appropriate to increase the amount of information provided.
Márton, Margita; Kurucz, Anita; Lizák, Beáta; Margittai, Éva; Bánhegyi, Gábor; Kapuy, Orsolya
2017-01-05
Accumulation of misfolded/unfolded proteins in the endoplasmic reticulum (ER) leads to the activation of three branches (Protein kinase (RNA)-like endoplasmic reticulum kinase [PERK], Inositol requiring protein 1 [IRE-1] and Activating trascription factor 6 [ATF6], respectively) of unfolded protein response (UPR). The primary role of UPR is to try to drive back the system to the former or a new homeostatic state by self-eating dependent autophagy, while excessive level of ER stress results in apoptotic cell death. Our study focuses on the role of PERK- and IRE-1-induced arms of UPR in life-or-death decision. Here we confirm that silencing of PERK extends autophagy-dependent survival, whereas the IRE-1-controlled apoptosis inducer is downregulated during ER stress. We also claim that the proper order of surviving and self-killing mechanisms is controlled by a positive feedback loop between PERK and IRE-1 branches. This regulatory network makes possible a smooth, continuous activation of autophagy with respect to ER stress, while the induction of apoptosis is irreversible and switch-like. Using our knowledge of molecular biological techniques and systems biological tools we give a qualitative description about the dynamical behavior of PERK- and IRE-1-controlled life-or-death decision. Our model claims that the two arms of UPR accomplish an altered upregulation of autophagy and apoptosis inducers during ER stress. Since ER stress is tightly connected to aging and age-related degenerative disorders, studying the signaling pathways of UPR and their role in maintaining ER proteostasis have medical importance.
Johnson, Jerry; Hayden, Tara; True, Jennifer; Simkin, Daren; Colbert, Louis; Thompson, Beverly; Stewart, Denise; Martin, Latoya
2016-02-01
African Americans underuse palliative care and hospice services because of a combination of factors including faith beliefs. As the spiritual family for many African Americans, the church presents an opportunity to improve communication about palliative care and hospice and end-of-life (EOL) decision making. We conducted a focus group study to understand the cultural and spiritual perspectives that influence decisions about palliative care and hospice among African American church members who visit and support persons with life-limiting illnesses. Our specific aims were to elicit their perceptions, beliefs, and attitudes about: (1) the relation between faith beliefs and EOL care; (2) emotional and family influences on EOL decision making; (3) palliative care and hospice resources; and (4) opportunities to improve communication among lay persons and health professionals and within families. Seven focus groups using purposeful sampling. We partnered with two African American churches. Of 51 persons, 27 were deacons or deaconesses, 17 were members of health or bereavement ministries, and 7 were other members of the congregations. We found that faith beliefs of African Americans can support discussions about palliative care and hospice. Participants perceived that many of their congregants harbor beliefs, perceptions, and feelings about death and dying that were often not communicated to family members or to health providers. Among African Americans, faith beliefs, emotional issues, family dynamics, and insufficient knowledge of palliative care and hospice are intertwined and influence decision making about palliative care and hospice. Our findings confirm the influence of faith beliefs of African Americans on decisions about palliative care and hospice and demonstrate the opportunity to improve communication about palliative care and hospice and EOL through collaborations with the African American church.
Clinical decision making and the expected value of information.
Willan, Andrew R
2007-01-01
The results of the HOPE study, a randomized clinical trial, provide strong evidence that 1) ramipril prevents the composite outcome of cardiovascular death, myocardial infarction or stroke in patients who are at high risk of a cardiovascular event and 2) ramipril is cost-effective at a threshold willingness-to-pay of $10,000 to prevent an event of the composite outcome. In this report the concept of the expected value of information is used to determine if the information provided by the HOPE study is sufficient for decision making in the US and Canada. and results Using the cost-effectiveness data from a clinical trial, or from a meta-analysis of several trials, one can determine, based on the number of future patients that would benefit from the health technology under investigation, the expected value of sample information (EVSI) of a future trial as a function of proposed sample size. If the EVSI exceeds the cost for any particular sample size then the current information is insufficient for decision making and a future trial is indicated. If, on the other hand, there is no sample size for which the EVSI exceeds the cost, then there is sufficient information for decision making and no future trial is required. Using the data from the HOPE study these concepts are applied for various assumptions regarding the fixed and variable cost of a future trial and the number of patients who would benefit from ramipril. Expected value of information methods provide a decision-analytic alternative to the standard likelihood methods for assessing the evidence provided by cost-effectiveness data from randomized clinical trials.
Coronial law and practice: a human rights perspective.
Freckelton, Ian; McGregor, Simon
2014-03-01
Coronial law and practice inevitably impact upon the human rights of those affected by deaths. It is important that such rights be incorporated in how death investigations, up to and including coronial inquests, take place. This article explores the significant impact of the jurisprudence emanating from the European Court of Human Rights, as well as the application of such law by the courts of the United Kingdom and potentially in other countries. It argues that viewing the work of coroners through the lens of human rights is a constructive approach and that, although in the coronial legislation of Australia and New Zealand, many human rights, especially those of family members, and civil liberties are explicitly protected, there remain real advantages in reflecting upon compliance with human rights by death investigation procedures and decision-making.
The Evolution of End-of-Life Care: Ethical Implications for Case Management.
Fink-Samnick, Ellen
2016-01-01
This article: : Applicable to all health care sectors where case management is practiced. Few topics are more intimate and multifaceted for case managers than engaging with today's culturally diverse patient populations around end-of-life processes. The already prominent focus of this issue has been further elevated by a series of events to receive public attention. These include the Institute of Medicine's 2014 report-Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, rising numbers of patients around the globe requesting to end life on their own terms, and corresponding death with dignity initiatives and legislation.Another vital factor in the end-of-life equation involves how the latest generation of shared decision making influences the management of treatment dialogues among practitioners, patients, as well as insurance companies. Case managers are at the intersection of these complex interactions, working to achieve ethical, as well as legal accountability to the patient, employer, and profession while balancing personal perspectives. Professionals strive to effectively intervene with patients and their support systems facing end-of-life care decisions. It is essential case managers actively consider the intricacies of ethical practice and current contexts including death with dignity legislation, shared decision making, and shifts in regulations and reimbursement for end-of-life care.Case management's ethical envelope will continue to be pushed. To that end amid shifting societal constructs, professionals must have mastery of applicable codes, standards, principles, and rules essential for adherence to ethical practice.
Gandsman, Ari
2018-01-01
The right to die is an issue is predicated on larger cultural understandings of autonomy. Autonomy, in turn, is centered around assumptions of choice, that individuals are able to make health-related decisions based on a rational calculation. In such a way, a medically assisted death is differentiated from suicide. Through an ethnographic study of right-to-die activists in North America and Australia and how they understand ideals of "good deaths," this article will complicate this view by examining the ethical subject constructed by such activism that reveals autonomy to be a useful guiding fiction that mask larger ethical relationships.
Gallagher, Ann; Bousso, Regina Szylit; McCarthy, Joan; Kohlen, Helen; Andrews, Tom; Paganini, Maria Cristina; Abu-El-Noor, Nasser Ibrahim; Cox, Anna; Haas, Margit; Arber, Anne; Abu-El-Noor, Mysoon Khalil; Baliza, Michelle Freire; Padilha, Katia Grillo
2015-04-01
Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life-sustaining treatment and the shift to comfort and palliative care. These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses' end-of-life (EoL) decision-making practice across cultures. To understand nurses' EoL decision-making practices in ICUs in different cultural contexts. We collected and analysed qualitative data using Grounded Theory. Interviews were conducted with experienced ICU nurses in university or hospital premises in five countries: Brazil, England, Germany, Ireland and Palestine. Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life (EoL) decision-making. The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant. The core category that emerged was 'negotiated reorienting'. Whilst nurses do not make the 'ultimate' EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving). There was consensus regarding the core concept and core practices employed by nurses in the ICUs in the five countries. However, there were some discernible differences regarding the power dynamics in nurse-doctor relationships, particularly in relation to the cultural perspectives on death and dying and in the development of palliative care. The research suggests the need for culturally sensitive ethics education and bereavement support in different cultural contexts. Copyright © 2015. Published by Elsevier Ltd.
Decision strategies to reduce teenage and young adult deaths in the United States.
Keeney, Ralph L; Palley, Asa B
2013-09-01
This article uses decision analysis concepts and techniques to address an extremely important problem to any family with children, namely, how to avoid the tragic death of a child during the high-risk ages of 15-24. Descriptively, our analysis indicates that of the 35,000 annual deaths among this age group in the United States, approximately 20,000 could be avoided if individuals chose readily available alternatives for decisions relating to these deaths. Prescriptively, we develop a decision framework for parents and a child to both identify and proactively pursue decisions that can lower that child's exposure to life-threatening risks and positively alter decisions when facing such risks. Applying this framework for parents and the youth themselves, we illustrate the logic and process of generating proactive alternatives with numerous examples that each could pursue to lower these life-threatening risks and possibly avoid a tragic premature death, and discuss some public policy implications of our findings. © 2013 Society for Risk Analysis.
Brooten, Dorothy; Youngblut, JoAnne M.; Charles, Donna; Roche, Rosa; Hidalgo, Ivette; Malkawi, Fatima
2015-01-01
Purpose To examine rituals (disposing remains, wakes, funerals/burials, celebrations) of White, Black, Hispanic parents post ICU infant/child death. Design and methods Qualitative design, 63 parents completed English or Spanish semi-structured interviews at 7 & 13 months after infant’s/child’s death. Interviews were audio-recorded, transcribed verbatim, and entered into Atlas.ti for analysis. An inductive approach to thematization was used to develop codes. Results Parents: mean age 35.1 years (SD = 9.03); 33% Black, 27% White, 40% Hispanic; from 17 countries. Three themes emerged: immediately after death - shock and stress, needing help with arrangements, decisions on burial or cremation (conflicts due to finances, religion, culture), when and where to hold wakes, funerals/burials. Wakes and funerals - who prepares child’s body, appropriate dress (deceased child, mourners), who can come (cultural restrictions),-variations by child age, parent choice, culture, religion, country. After burial/cremation - being with family, milestone celebrations. Conclusion Child death is devastating for parents, other children, grandparents, and family members. Practice Implications. Rituals after child death require decisions about the child’s remains, wakes, funerals/burials at time of great pain for parents. This is especially true for newly immigrated parents and those with language barriers where making arrangements is especially hard and often very isolating. Health professionals who provide support need to be cognizant of practice differences based on religion, culture, economics, family traditions, and individual preference and provide as much support and resource as possible. A list of religious leaders representing the community’s cultures and funeral service providers who may provide lower cost burials/cremations is helpful. PMID:26639773
Jensen, Anja M B
2016-09-01
Based on anthropological fieldwork among Danish organ donor families and hospital staff in neurointensive care units, this article explores the transformative practices of hope in Danish organ donation. Focusing on various phases of the organ donation process, I demonstrate how families and professionals practice hope in astounding ways: when hoping for organs, when hoping for the end of patient suffering, when hoping for the usability of the donor body, and when hoping to help future donor families by sharing painful experiences. By focusing on such practices and transformations of hope, this article sheds light on the social negotiations of life and death among families and staffs in medical contexts and describes how the dignity of the deceased donor and the usability of the donor body are closely connected in family attempts to make donation decisions meaningful during and after a tragic death. © 2016 by the American Anthropological Association.
North, Frederick; Fox, Samuel; Chaudhry, Rajeev
2016-07-20
Risk calculation is increasingly used in lipid management, congestive heart failure, and atrial fibrillation. The risk scores are then used for decisions about statin use, anticoagulation, and implantable defibrillator use. Calculating risks for patients and making decisions based on these risks is often done at the point of care and is an additional time burden for clinicians that can be decreased by automating the tasks and using clinical decision-making support. Using Morae Recorder software, we timed 30 healthcare providers tasked with calculating the overall risk of cardiovascular events, sudden death in heart failure, and thrombotic event risk in atrial fibrillation. Risk calculators used were the American College of Cardiology Atherosclerotic Cardiovascular Disease risk calculator (AHA-ASCVD risk), Seattle Heart Failure Model (SHFM risk), and CHA2DS2VASc. We also timed the 30 providers using Ask Mayo Expert care process models for lipid management, heart failure management, and atrial fibrillation management based on the calculated risk scores. We used the Mayo Clinic primary care panel to estimate time for calculating an entire panel risk. Mean provider times to complete the CHA2DS2VASc, AHA-ASCVD risk, and SHFM were 36, 45, and 171 s respectively. For decision making about atrial fibrillation, lipids, and heart failure, the mean times (including risk calculations) were 85, 110, and 347 s respectively. Even under best case circumstances, providers take a significant amount of time to complete risk assessments. For a complete panel of patients this can lead to hours of time required to make decisions about prescribing statins, use of anticoagulation, and medications for heart failure. Informatics solutions are needed to capture data in the medical record and serve up automatically calculated risk assessments to physicians and other providers at the point of care.
Bradshaw, Debbie; Chopra, Mickey; Kerber, Kate; Lawn, Joy E; Bamford, Lesley; Moodley, Jack; Pattinson, Robert; Patrick, Mark; Stephen, Cindy; Velaphi, Sithembiso
2008-04-12
South Africa is one of the few developing countries with a national confidential inquiry into maternal deaths. 164 health facilities obtain audit data for stillbirths and neonatal deaths, and a new audit network does so for child deaths. Three separate reports have been published, providing valuable information about avoidable causes of death for mothers, babies, and children. These reports make health-system recommendations, many of which overlap and are intertwined with the scarcity of progress in addressing HIV/AIDS. The leaders of these three reports have united to prioritise actions to save the lives of South Africa's mothers, babies, and children. The country is off-track for the health-related Millennium Development Goals. Mortality in children younger than 5 years has increased, whereas maternal and neonatal mortality remain constant. This situation indicates the challenge of strengthening the health system because of high inequity and HIV/AIDS. Coverage of services is fairly high, but addressing the gaps in quality and equity is essential to increasing the number of lives saved. Consistent leadership and accountability to address crosscutting health system and equity issues, and to prevent mother-to-child transmission of HIV, would save tens of thousands of lives every year. Audit is powerful, but only if the data lead to action.
Hong Kong Chinese teachers' attitudes towards life-sustaining treatment in the dying patients.
Lee, J C Y; Chen, P P; Yeo, J K S; So, H Y
2003-06-01
To evaluate the attitudes of Hong Kong Chinese teachers towards life-sustaining treatment in the dying patients. Prospective structured questionnaire survey. Hong Kong Institute of Education. All teaching staff at the Hong Kong Institute of Education were sent the survey questionnaire. The questionnaire gathered demographic data, information on experience of 'life and death' decision-making, and views on life-sustaining treatment decisions. Respondents were also requested to respond to statements on life-sustaining treatment using a 5-point Likert Scale (1 representing strong disagreement and 5 representing strong agreement). A total of 436 questionnaires were sent to teaching staff at the Hong Kong Institute of Education. The response rate was 27.8%. More than half (65.8%) of the respondents were aged between 30 and 49 years. There was an equal proportion of men and women among respondents. The respondents agreed with statements supporting end-of-life decisions (mean aggregate score, 3.13; standard deviation, 1.24; P<0.0001), and disagreed with statements against such decisions (mean aggregate score, 2.81; standard deviation, 1.22; P<0.0001). If the patient is competent, half of the respondents agreed that the patient alone should make the decision, while 27.2% believed that it should be a joint decision made by the patient, the family, and the doctor. Conversely, if the patient is incompetent, 52.6% agreed that it should be a joint decision made by the family and the doctor. There was strong support for advanced directives, whereby decisions in relation to life-sustaining treatment were legally recorded in advance (mean score, 3.62; P=0.0001). The teachers in this survey appear to support the practice of withdrawing and withholding life-sustaining treatment in the dying patients when medical treatment is considered futile. Although patient autonomy in decision-making was supported by the greatest number of respondents, joint decision-making by the patient, family members, and doctors was also favoured by a substantial group. There was strong support for the use of advanced directives with respect to life-sustaining treatment.
Seale, Clive
2010-11-01
The prevalence of religious faith among doctors and its relationship with decision-making in end-of-life care is not well documented. The impact of ethnic differences on this is also poorly understood. This study compares ethnicity and religious faith in the medical and general UK populations, and reports on their associations with ethically controversial decisions taken when providing care to dying patients. A postal survey of 3733 UK medical practitioners, of whom 2923 reported on the care of their last patient who died. Specialists in care of the elderly were somewhat more likely to be Hindu or Muslim than other doctors; palliative care specialists were somewhat more likely to be Christian, religious and 'white' than others. Ethnicity was largely unrelated to rates of reporting ethically controversial decisions. Independently of speciality, doctors who described themselves as non-religious were more likely than others to report having given continuous deep sedation until death, having taken decisions they expected or partly intended to end life, and to have discussed these decisions with patients judged to have the capacity to participate in discussions. Speciality was independently related to wide variations in the reporting of decisions taken with some intent to end life, with doctors in 'other hospital' specialities being almost 10 times as likely to report this when compared with palliative medicine specialists, regardless of religious faith. Greater acknowledgement of the relationship of doctors' values with clinical decision-making is advocated.
Medical ethics--a Christian view.
Habgood, J S
1985-01-01
All ethics has a religious dimension. This paper considers how specific Christian insights concerning death, suffering, human nature and human creatureliness can help to expose more fully the moral issues at stake in some of the dilemmas faced by doctors. It ends by acknowledging the crushing burden of decision-making which rests on many in the medical profession, and indicates the importance of religious resources in dealing with this. PMID:3981562
Barnato, Amber E; Arnold, Robert M
2013-07-01
Surrogate decision makers for critically ill patients experience strong negative emotional states. Emotions influence risk perception, risk preferences, and decision making. We sought to explore the effect of emotional state and physician communication behaviors on surrogates' life-sustaining treatment decisions. 5 × 2 between-subject randomized factorial experiment. Web-based simulated interactive video meeting with an intensivist to discuss code status. Community-based participants 35 and older who self-identified as the surrogate for a parent or spouse recruited from eight U.S. cities through public advertisements. Block random assignment to emotion arousal manipulation and each of the four physician communication behaviors. Surrogate's code status decision (cardiopulmonary resuscitation vs do not resuscitate/allow natural death). Two hundred fifty-six of 373 respondents (69%) logged-in and were randomized: average age was 50; 70% were surrogates for a parent; 63.5% were women; 76% were white, 11% black, and 9% Asian; and 81% were college educated. When asked about code status, 56% chose cardiopulmonary resuscitation. The emotion arousal manipulation increased the score on depression-dejection scale (β = 1.76 [0.58 - 2.94]) but did not influence cardiopulmonary resuscitation choice. Physician attending to emotion and framing the decision as the patient's rather than the surrogate's did not influence cardiopulmonary resuscitation choice. Framing no cardiopulmonary resuscitation as the norm rather than cardiopulmonary resuscitation resulted in fewer surrogates choosing cardiopulmonary resuscitation (48% vs 64%, odds ratio, 0.52 [95% CI, 0.32-0.87]), as did framing the alternative to cardiopulmonary resuscitation as "allow natural death" rather than do not resuscitate (49% vs 61%, odds ratio, 0.58 [95% CI, 0.35-0.96]). Experimentally induced emotional state did not influence code status decisions, although small changes in physician communication behaviors substantially influenced this decision.
Management of locally advanced rectal cancer in the elderly: a critical review and algorithm
Maloney-Patel, Nell; Malhotra, Usha; Wang, Shang-Jui; Chokhavatia, Sita; Dalal, Ishita; Poplin, Elizabeth; Jabbour, Salma K.
2018-01-01
Colorectal cancer incidence and death rates have been declining over the past 10 years. However, it remains the second leading cause of death in men ages 60–79 and the third leading cause of death in men over 80 and in women over 60 years old. However, there is little data specific to the treatment of the elder patient, since few of these patients are included in trials. With the advent of improved therapies, there are many alternative options available. Still, no definitive consensus or guidelines have been defined for this particular patient population. The goal of this study is to review the literature on the management of rectal cancer in the elderly and to propose treatment algorithms to help the oncology team in treatment decision-making. PMID:29755777
Uramatsu, Masashi; Fujisawa, Yoshikazu; Mizuno, Shinya; Souma, Takahiro; Komatsubara, Akinori; Miki, Tamotsu
2017-02-16
We sought to clarify how large a proportion of fatal medical accidents can be considered to be caused by poor non-technical skills, and to support development of a policy to reduce number of such accidents by making recommendations about possible training requirements. Summaries of reports of fatal medical accidents, published by the Japan Medical Safety Research Organization, were reviewed individually. Three experienced clinicians and one patient safety expert conducted the reviews to determine the cause of death. Views of the patient safety expert were given additional weight in the overall determination. A total of 73 summary reports of fatal medical accidents were reviewed. These reports had been submitted by healthcare organisations across Japan to the Japan Medical Safety Research Organization between April 2010 and March 2013. The cause of death in fatal medical accidents, categorised into technical skills, non-technical skills and inevitable progress of disease were evaluated. Non-technical skills were further subdivided into situation awareness, decision making, communication, team working, leadership, managing stress and coping with fatigue. Overall, the cause of death was identified as non-technical skills in 34 cases (46.6%), disease progression in 33 cases (45.2%) and technical skills in two cases (5.5%). In two cases, no consensual determination could be achieved. Further categorisation of cases of non-technical skills were identified as 14 cases (41.2%) of problems with situation awareness, eight (23.5%) with team working and three (8.8%) with decision making. These three subcategories, or combinations of them, were identified as the cause of death in 33 cases (97.1%). Poor non-technical skills were considered to be a significant cause of adverse events in nearly half of the fatal medical accidents examined. Improving non-technical skills may be effective for reducing accidents, and training in particular subcategories of non-technical skills may be especially relevant. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
The utility of a Personal Values Report for medical decision-making.
Henderson, W; Corke, C
2015-09-01
Our aim was to determine if a patient's Personal Values Report (PVR) has a positive impact on a doctor's decisions regarding treatment. We conducted a prospective cohort study delivering a short, web-based hypothetical case-centred questionnaire to intensive care doctors practising in Australia and New Zealand. One hundred and twenty-four intensive care consultants and registrars agreed to participate in an online questionnaire in two routine mailings between November 2013 and February 2014. We evaluated the effect of a PVR on clinical decision-making in a case-based scenario. In addition, participants rated the utility of the PVR on their decision-making process. Participants were presented with a difficult scenario in a frail elderly man where death was almost inevitable without aggressive support but survival with severe disability was possible with significant intervention. Most doctors (52.4%) elected to continue ventilation and admit to ICU. After the PVR was made available, only 8.1% of doctors continued to choose to admit the patient to the ICU. In all cases where admission to the ICU was chosen after seeing the PVR, the admission to the ICU was stated to be to permit family to arrive before withdrawing support (an approach which was consistent with the values stated in the PVR). One hundred and twenty-one of the 124 participants (97.6%) agreed or strongly agreed that the PVR helped them get an understanding of the patient's wishes, whereas none of the participants (0%) were unsure, disagreed or strongly disagreed with this statement. The remaining 2.4% did not answer the question. It is surmised that PVRs pre-written by patients are potentially an effective and valuable tool for use in helping doctors make decisions regarding patient care.
Stachura, Peter; Oberender, Peter; Bundscherer, Anika C; Wiese, Christoph H R
2015-02-01
More than 70 % of critically ill patients die in intensive care units (ICUs) after treatment is reduced. End-of-life decision making in the ICU is a grey area that varies in practice, and there are potential economic consequences of over- and under-treatment. The aim of this study was to describe the end-of-life decisions of critically ill patients in a surgical ICU in Germany and to identify how financial incentives may influence decision making. Data on the admission diagnosis, end-of-life decision making and cause of death were obtained for 69 critically ill patients who died in the ICU (Hospital of Bayreuth, Germany) in 2009. A cost-revenue analysis was conducted on the 46 patients who did not die within 3 days of ICU admission. Because we lacked real data on costs, our analysis was based on the average cost for each diagnosis-related group (DRG) from the Institute for the Hospital Remuneration System (InEK). Hospital revenues based on the DRG were considered. Subsequently, we compared the estimated financial impact of earlier and later decisions to withdraw or withhold futile therapy. In this study, we found that end-of-life decision making was poorly documented. Only 11 % of patients had a valid power of attorney and advanced directives, and therapy with presumed consent was performed in 43 % of all cases. From long-stay patients, therapy was withdrawn for 37 % of patients and withheld from 26 % of patients, and 37 % of the patients died receiving maximal therapy. Almost 72 % of DRG-related reimbursements were dependent on ventilation hours. The average total cost estimate (according to InEK) for the 46 long-stay patients was 1,201,000
Walker, Wendy; Broderick, Andrew; Sque, Magi
2013-11-01
This article reports on the process and outcomes of a systematic integrative literature review, designed to enhance understanding of the factors influencing bereaved families' decisions to agree or decline the donation of their deceased relative's organs for transplantation. Research originating from eight Western countries (N = 20 studies) provided an international perspective to the review. Thematic analysis and synthesis of textual data culminated in the development of three global themes (past, present, and future) that captured the temporal dimensions of family decision making. The review findings provide valuable insight into ways of increasing the rate of consent to organ donation through the development family-centered care interventions that reflect the needs of the bereaved. Further research to explore the pathway of donation after circulatory death and the experiences of bereaved families who decline organ donation is essential to providing a more complete understanding of the factors affecting donation decisions.
Neoliberal reform and health dilemmas: social hierarchy and therapeutic decision making in Senegal.
Foley, Ellen E
2008-09-01
In this article, I trace the links among neoliberalism, regional ecological decline, and the dynamics of therapeutic processes in rural Senegal. By focusing on illness management in a small rural community, the article explores how economic reform is mediated by existing social structures, and how household social organization in turn influences therapeutic decision making. The illness episodes relayed here demonstrate how the acute economic and social crisis facing the Ganjool region becomes written on the bodies of young men, and how the fault lines of gender and generation shape illness experiences. These narratives also illuminate the tremendous discrepancy between the lived realities of sickness and death, and the idealized models of health participation and empowerment envisioned by the state. Rather than "neoliberal subjects" who behave as rational economic actors, men and women coping with illness are social beings embedded in fields of power characterized by highly stratified household social relations.
Rönnlund, Michael; Karlsson, Erik; Laggnäs, Erica; Larsson, Lisa; Lindström, Therese
2005-01-01
In the present study, the authors investigated the effects of framing of options on risky decision making in groups of younger adults (M = 23.8 years, n = 192) and older adults (M = 69.1 years, n = 192). The participants were assigned to one of three scenarios varying in the goods at stake (human lives, paintings, money). The authors observed a majority preference in favor of the risky options after negative, but not positive framing. They also found, as they had predicted, that the type of framing effect varied across scenarios, with a bidirectional framing effect for the life-death scenario and unidirectional (risk averse) framing effects when public property (paintings) or personal property (money) were at stake. It is important to note that these choice preference patterns were highly similar across the age groups, which reinforced the conclusion that younger and older adults are equally susceptible to framing effects.
Death, dignity, and moral nonsense.
Pullman, Daryl
2004-01-01
Although the concept of human dignity is widely invoked in discussions regarding end-of-life decision making, the content of the notion is ambiguous. Such ambiguity has led some to conclude that human dignity is a redundant or even useless concept that we would be better off without. This paper argues, to the contrary, that the concept of human dignity is indispensable to moral discourse. Far from dispensing with human dignity, we must work to clarify the concept. The paper outlines two distinct but related conceptions of dignity that are often conflated in contemporary moral discourse. These conceptions are labelled "basic dignity" and "personal dignity", respectively. It is argued that basic dignity functions as a universal meaning constraint on moral discourse in general. Hence, to dispense with the notion could reduce us to speaking moral nonsense. Throughout the discussion, some implications for our understanding of end-of-life decision making are explored.
Commentary: Pursuing justice in death penalty trials.
Watson, Clarence; Eth, Spencer; Leong, Gregory B
2012-01-01
The capital trial, by its nature, is fraught with emotionally disturbing elements that jurors must face when deciding the ultimate fate of a guilty defendant. A confluence of mitigating and aggravating factors influences a capital jury's decision to impose a sentence of death. The presence or absence of defendant remorse in these cases may make all the difference in whether a capital defendant's life is spared. This commentary examines the onerous emotional toll encountered by capital jurors in light of the findings of Corwin and colleagues regarding defendant remorse and juror's need for affect. The commentary also presents practical and ethics-related considerations that should be kept in mind when reflecting on their study.
Albayrak, Turgay; Şencan, İrfan; Akça, Ömer; Koç, Esra Meltem; Aksoy, Hilal; Ünsal, Selim; Bülbül, İskender; Bahadır, Adem; Kasım, İsmail; Kahveci, Rabia; Özkara, Adem
2017-01-01
The participation of the people in health decisions may be structured in various levels. One of these is participation in decisions for the treatment. "Advanced directives" is one of the examples for the participation in decisions for the treatment. We wanted to determine the decisions on advanced life support at the end-stage of life in case of a life-threatening illness for the people themselves and their first degree relatives and the factors effecting these decisions. The cross-sectional study was conducted with volunteers among patients and patient relatives who applied to all polyclinics of the Ankara Numune Training and Research Hospital except the emergency, oncology and psychiatry polyclinics between 15.12.2012 and 15.03.2013. A questionnaire, the Hospital Anxiety Depression (HAD) scale, and Templer's Death Anxiety Scale (TDA) were applied to all individuals. SPSS for Win. Ver. 17.0 and MS-Excel 2010 Starter software bundles were used for all statistical analysis and calculations. The participants want both themselves and their first degree relatives included in end-stage decision-making process. Therefore, the patients and their families should be informed adequately during decision making process and quality communication must be provided. Participants who have given their end-stage decisions previously want to be treated according to these decisions. This desire can just be possible by advanced directives.When moral and material loads of end-stage process are taken into consideration, countries, in which advanced directives are practiced, should be examined well and participants' desire should be evaluated in terms of practicability.
Nelson, Judith E.; Weissman, David E.; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Cortez, Therese B.; Curtis, J. Randall
2012-01-01
Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes. PMID:22396564
The effect of threat of litigation on forensic pathologist diagnostic decision making.
Oliver, William Russell
2011-12-01
Recent litigation involving medical examiners has caused concern over certifying deaths. We administered a survey of 716 medical examiners regarding the effects of the threat of litigation. Two hundred twenty-two medical examiners responded (31%). Of those who responded, approximately 13.5% admitted to having modified their diagnostic findings due to threat of litigation, and approximately 32.5% stated these considerations would affect their decisions in the future. Physicians who indicated they had or would modify their diagnoses expressed more concern over the possibility of litigation. Chiefs of services were less likely than staff members to indicate changing diagnoses. Practitioners whose jurisdictions included rural areas were significantly more likely to indicate that litigation considerations would affect their diagnoses in the future, although this was not true with those who had already modified their diagnoses. No correlation was found with elected versus appointed positions, accreditation status, sex, race, geographic location, or board certification. Although very few medical examiners have actually been sued because of their diagnoses, a demonstrated threat of litigation has a substantial effect on diagnostic decision making.
Do linden trees kill bees? Reviewing the causes of bee deaths on silver linden (Tilia tomentosa).
Koch, Hauke; Stevenson, Philip C
2017-09-01
For decades, linden trees (basswoods or lime trees), and particularly silver linden ( Tilia tomentosa ), have been linked to mass bee deaths. This phenomenon is often attributed to the purported occurrence of the carbohydrate mannose, which is toxic to bees, in Tilia nectar. In this review, however, we conclude that from existing literature there is no experimental evidence for toxicity to bees in linden nectar. Bee deaths on Tilia probably result from starvation, owing to insufficient nectar resources late in the tree's flowering period. We recommend ensuring sufficient alternative food sources in cities during late summer to reduce bee deaths on silver linden. Silver linden metabolites such as floral volatiles, pollen chemistry and nectar secondary compounds remain underexplored, particularly their toxic or behavioural effects on bees. Some evidence for the presence of caffeine in linden nectar may mean that linden trees can chemically deceive foraging bees to make sub-optimal foraging decisions, in some cases leading to their starvation. © 2017 The Author(s).
[Patients in pre-dialysis: decision taking and free choice of treatment].
Sarrias Lorenz, X; Bardón Otero, E; Vila Paz, M L
2008-01-01
Predialysis is a clinical situation in which the patient has significant impairment of kidney function that will ultimately lead to either death or inclusion in kidney replacement therapy (dialysis and/or transplantation). Since a practical and effective dialysis technique was introduced, the length and quality of survival of patients with end-stage renal failure has constantly increased. Contraindications for dialysis are almost never of a renal origin. The obstacles are the concomitant diseases of the patient. The age of the patient may be one of these obstacles. The average age at initiation of dialysis in our country is currently 67 years and over 50% of patients are 60 years old or older. Decision making: From an ethical viewpoint, there is a consensus in stating that anything that can technically be done, should be done. The principle of nonmaleficence and respect for the autonomy of the patients are "prima facie" principles when the physician has doubts as to whether dialysis provides a benefit to the patient. The principle of autonomy, which makes the patient a competent subject of treatment, allows a framework of shared decisions to be created in which the physician uses his knowledge and experiences in assessing the risk and benefits of dialysis including the alternative of no dialysis. The competent patient, duly informed, will chose the option that is best for him and take the decision. Principle of treatment proportionality: This principle states that there is a moral obligation to implement all therapeutic measures that show a relationship of due proportion between the resources used and the expected result. Dialysis is in principle a proportional treatment for end-stage renal failure. However, it may become a disproportional treatment because of the physical and mental conditions of the elderly patient. The good that is sought with institution of treatment can cause a harm to the patient that justifies noninclusion of the patient in dialysis treatment. Because of the impossibility of establishing universal rules of proportionality, it is necessary to make a personal judgment of conscience in each specific case. Recommendations for initiation or not of dialysis: Taking shared decisions between the patient (or relatives and/or advisors) and the physician. These shared decisions will be documented with signing of the proposed informed consent or rejection of the treatment. The medical team should always be sure that the patients has fully understood the consequences of the decision taken. Explanation of the modalities should include: - Types of dialysis treatment available. - Not to initiate dialysis and continue with conservative treatment until death. This situation may cause many problems if we do not have the help of the palliative care service. - Try dialysis for a limited time. - Stop dialysis and receive medical care until death. - Evaluate the prognosis of renal disease and concomitant diseases, life expectancy and family support. Resolution of conflicts: Conflicts may occur: - Between nephrologist and patient/family. - Between members of the nephrological team. - Between nephrologist and other physicians. When conflicts persist and the need for initiation of dialysis is urgent, it is necessary to initiate treatment and continue it until the resolution of these conflicts, making a record of this decision. In such cases, the Hospital Ethics Care Committee can help with appropriate advice to solve the discrepancies. Decisions taken in advance may be useful in this type of patients. Patients with advanced chronic kidney disease with criteria for Noninclusion or withdrawal of dialysis. - Severe or irreversible dementia. - conditions of permanent unconsciousness. - advanced tumors with metastasis. - terminal disease of another nontransplantable organ. - severe physical and/or mental disabilities. (Strength of Recommendation C)
Inghelbrecht, E; Bilsen, J; Mortier, F; Deliens, L
2009-10-01
We investigated on a nationwide level the attitudes of nurses towards end-of-life decisions (ELDs) that may hasten death and towards their role in those decisions. We took a representative random sample of 6000 nurses in Flanders, Belgium. Response rate was 62.5%. Most nurses agreed with the practice of withholding/withdrawing potentially life-prolonging treatments (93%), with decisions to alleviate symptoms with possible life-shortening side effects (96%) and with the practice of euthanasia (92%). Their support for the different decisions existed regardless of whether they had cared for terminally ill patients or not. Most nurses also thought that they have an important role to play especially in the ELD-making process. Nurses' views on their proper role in the administration of drugs in euthanasia and continuous deep sedation showed a large dispersal. Overall, nurses' work setting determines their opinions on nurses' role in ELDs. In conclusion, nurses accept a wide variety of ELDs being practiced with terminally ill patients.
Kouéta, Fla; Ouédraogo Yugbaré, Solange Odile; Dao, Lassina; Dao, Fousséni; Yé, Diarra; Kam, Kobena Ludovic
2011-01-01
To determine the causes of neonatal deaths and their contributing factors. We used the "three-delay model" to conduct an audit of the neonatal deaths that occurred between January 2006 and December 2010 at the Charles de Gaulle University Pediatric Hospital, in Ouagadougou. The neonatal mortality rate was 12.3%. The main direct causes were infections (70%), cerebral distress (10%), respiratory distress (7%), congenital malformations (5.5%), prematurity (4.5%) and hemorrhagic syndromes (3%). All three delays were found: in decision making in 64.4% of cases, in access to health services in 77%, and in receiving appropriate care in 66.9%; they multiplied the risk of death by a factor of 4, 3 and 5, respectively. To reduce deaths of newborn babies, it is necessary to overcome the three delays that contribute to it, pending the improvement of socioeconomic conditions of populations. This combat requires optimizing the implementation of the subsidies for obstetric and neonatal emergency care and strengthening the involvement of all stakeholders, specifically, policy makers, the community and health professionals.
Bedsharing at home, breastfeeding and sudden infant death.Recommendations for health professionals
Jenik, Alejandro; Conti, Roxana
2017-10-01
The Sudden and Unexpected Infant Death Task Force together with the Subcommittee on Breastfeeding of the Sociedad Argentina de Pediatría have issued updated recommendations on bedsharing with the parents, a practice which remains controversial. Sleeping with the mother maximizes breastfeeding, which is protective against Sudden Infant Death. There is a small group of infants that have been associated with an increased risk of Sudden Infant Death and fatal sleeping accidents in certain circumstances. These hazards include parental smoking, sedating drugs or medication and alcohol consumption prior to sleep and sofa sharing situations. Bedsharing by breastfeeding mothers with their infants, in the absence of the above-mentioned risk factors, and with parents aware of how to ensure a safe infant sleep environment has not been shown to be associated with increased risk of Sudden Infant Death. This guidance does not advise on telling parents that they must never sleep with the baby, but rather instructs health professionals to give parents balanced advice to allow informed decision making, emphasizing the concept that parental room sharing without bedsharing is the safest place for the babies to sleep
Code of Federal Regulations, 2010 CFR
2010-07-01
... of 38 U.S.C. 6104 and 6105, issues involved in a survivor's claim for death benefits will be decided... death benefits by survivor-prior unfavorable decisions during veteran's lifetime. 20.1106 Section 20... VETERANS' APPEALS: RULES OF PRACTICE Finality § 20.1106 Rule 1106. Claim for death benefits by survivor...
Quality of death notification forms in North West Bank/Palestine: a descriptive study.
Qaddumi, Jamal A S; Nazzal, Zaher; Yacoup, Allam R S; Mansour, Mahmoud
2017-04-11
The death notification forms (DNFs) are important documents. Thus, inability to fill it properly by physicians will affect the national mortality report and, consequently, the evidence-based decision making. The errors in filling DNFs are common all over the world and are different in types and causes. We aimed to evaluate the quality of DNFs in terms of completeness and types of errors in the cause of death section. A descriptive study was conducted to review 2707 DNFs in North West Bank/Palestine during the year 2012 using data abstraction sheets. SPSS 17.0 was used to show the frequency of major and minor errors committed in filling the DNFs. Surprisingly, only 1% of the examined DNFs had their cause of death section filled completely correct. The immediate cause of death was correctly identified in 5.9% of all DNFs and the underlying cause of death was correctly reported in 55.4% of them. The sequence was incorrect in 41.5% of the DNFs. The most frequently documented minor error was "Not writing Time intervals" error (97.0%). Almost all DNFs contained at least one minor or major error. This high percentage of errors may affect the mortality and morbidity statistics, public health research and the process of providing evidence for health policy. Training workshops on DNF completion for newly recruited employees and at the beginning of the residency program are recommended on a regular basis. As well, we recommend reviewing the national DNFs to simplify it and make it consistent with updated evidence-based guidelines and recommendation.
de Saint Blanquat, L; Cremer, R; Elie, C; Lesage, F; Dupic, L; Hubert, P
2014-01-01
To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. A multicenter survey in 24 French PICUs during the fourth trimester 2010. One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Bell Holleran, Lisa L; Vaughan, Tyler J; Vandiver, Donna M
2016-11-01
Previous studies have found aggravating, mitigating, and null effects of defendant histories of abuse and neglect on punishment preferences in capital sentencing. Perceiving these defendants as more dangerous, jurors may be more likely to favor the death penalty when such evidence is presented. This is counter to the intuition that abuse or neglect reduces culpability, and therefore mitigates the severity of punishment. We investigated the effect of defendant childhood physical abuse, sexual abuse, or neglect on the probability of a prospective juror preferring the death penalty in an between-subject experimental design. Using vignettes and two large samples (students and jurors), defendant histories were found to mitigate the probability that the hypothetical defendant received the death penalty, with sexual abuse having the most salient effect. Further, the effects were conditioned by preference for the death penalty - larger mitigating effects were observed among individuals who favor the death penalty. These findings suggest that initial judgments of abuse and neglect are related to juror leniency, and further research on the interaction of jury instructions and defendant histories is needed. Copyright © 2017 John Wiley & Sons, Ltd. Copyright © 2017 John Wiley & Sons, Ltd.
Biffl, Walter L.; Smith, Wade R.; Moore, Ernest E.; Gonzalez, Ricardo J.; Morgan, Steven J.; Hennessey, Theresa; Offner, Patrick J.; Ray, Charles E.; Franciose, Reginald J.; Burch, Jon M.
2001-01-01
Objective To determine whether the evolution of the authors’ clinical pathway for the treatment of hemodynamically compromised patients with pelvic fractures was associated with improved patient outcome. Summary Background Data Hemodynamically compromised patients with pelvic fractures present a complex challenge. The multidisciplinary trauma team must control hemorrhage, restore hemodynamics, and rapidly identify and treat associated life-threatening injuries. The authors developed a clinical pathway consisting of five primary elements: immediate trauma attending surgeon’s presence in the emergency department, early simultaneous transfusion of blood and coagulation factors, prompt diagnosis and management of associated life-threatening injuries, stabilization of the pelvic girdle, and timely insinuation of pelvic angiography and embolization. The addition of two orthopedic pelvic fracture specialists led to a revision of the pathway, emphasizing immediate emergency department presence of the orthopedic trauma attending to provide joint decision making with the trauma surgeon, closing the pelvic volume in the emergency department, and using alternatives to traditional external fixation devices. Methods Using trauma registry and blood bank records, the authors identified pelvic fracture patients receiving blood transfusions in the emergency department. They analyzed patients treated before versus after the May 1998 revision of the clinical pathway. Results A higher proportion of patients in the late period had blood pressure less than 90 mmHg (52% vs. 35%). In the late period, diagnostic peritoneal lavage was phased out in favor of torso ultrasound as a primary triage tool, and pelvic binding and C-clamp application largely replaced traditional external fixation devices. The overall death rate decreased from 31% in the early period to 15% in the later period, as did the rate of deaths from exsanguination (9% to 1%), multiple organ failure (12% to 1%), and death within 24 hours (16% to 5%). Conclusions The evolution of a multidisciplinary clinical pathway, coordinating the resources of a level 1 trauma center and directed by joint decision making between trauma surgeons and orthopedic traumatologists, has resulted in improved patient survival. The primary benefits appear to be in reducing early deaths from exsanguination and late deaths from multiple organ failure. PMID:11407336
Medical and ethical dilemma in brain death.
Streba, Irina; Damian, Simona; Ioan, Beatrice
2012-01-01
For centuries, death has been defined, medically speaking, as the irreversible cessation of breathing and of nervous and cardiac activity. What radically changed this definition was the introduction of the concept "brain death" in 1968, by the "Ad Hoc Committee of the Harvard Medical School". According to it, the irreversible coma was associated with brain death and considered to be a criterion for the diagnosis of the deceased individual. The evergrowing need for transplant organs (provided this respects the dead honor rule, stipulating that organs can't be harvested unless someone is deceased) lead to making arbitrary decisions regarding the establishment of the exact time of death during the process of "losing life". What actually triggers the controversy related to the concept of brain death is the dilemma of associating this concept with that of biologic death or death of the person, the difference between the two being made by whether the mental characteristics are accepted or not in defining and individualizing the death of the human being. Given these circumstances, a dilemma appears--that of defining the death of the individual: we define death, as it has been for centuries, as the moment when the cardio-respiratory function no longer exists, which leads to the loss of tens of thousands of lives that might have been saved through transplant. Yet, this may lead to manipulating the border between life and death, with the risk of trespassing each individual's right to life.
O'Sullivan, E M; Higginson, I J
2016-03-01
Evidence currently suggests that many people would prefer to die at home. However, optimal end-of-life homecare depends on the patient's ability to express their care preferences, prognostic awareness, complexity of care, concordance of patient/carer preferences and availability of appropriate services/support. This study explores Irish Head and Neck Cancer (HNC) patient and caregivers' views on end-of-life care (EoLC), an area hitherto little studied. Qualitative data were collected using semistructured, one-to-one interviews with HNC patients with therapeutic experience and their nearest caregivers (n=10, 7 patients, 3 carers). Interview topic guide was developed from the PRISMA EoLC survey. Thematic content analysis was employed to interpret findings. Thematic analysis identified five broad EoLC themes: prognostication, decision making, preferred focus of care/advanced care planning (ACP), preferred place of care/death, perceived barriers/supports to home death. Participants were very willing to discuss most aspects of EoLC, exhibiting no signs of distress. Patients were reluctant to discuss preferred focus-of-care and ACP. This seemed linked to an overly optimistic view of aggressive medical intervention. While carers favoured full patient involvement in decision making, patients were divided between wanting autonomy and those preferring a more passive approach. All expressed a preference for homecare, and most felt they would ideally prefer to die at home. However, decision making was considered a complex process intertwined with risks, responsibilities and commitments to others. Carer burden and symptom control were major concerns. Normalising discussions on EoLC may benefit those affected by HNC. However, in HNC, this needs to be done alongside discussions regarding potentially life-extending treatment, symptom management and support. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Assisted suicide in the care of mentally ill patients: the Lucio Magri's case.
Frati, Paola; Gulino, Matteo; Mancarella, Paola; Cecchi, Rossana; Ferracuti, Stefano
2014-01-01
A year after Mario Monicelli's suicide, the death of another famous person in Italy, Lucio Magri, reawakened the Italian debate on social, ethical and juridical issues in end-of-life decisions. Unlike Monicelli, Lucio Magri decided to end his own life in Switzerland with the help of a physician because his mental illness rendered his life unbearable. Both Monicelli and Magri suffered from a severe depression. The authors analyze the ethical issues regarding the right to die for mentally ill patients and neurological disabled patients, discussing the decision-making autonomy in persons suffering from severe depression. The role of the psychiatry in the management of end-of-life decision requests is considered along with pros and cons of suicide prevention and rationale suicide. Copyright © 2013 Elsevier Ltd and Faculty of Forensic and Legal Medicine. All rights reserved.
Chung, Roger Yat-Nork; Wong, Eliza Lai-Yi; Kiang, Nicole; Chau, Patsy Yuen-Kwan; Lau, Janice Y C; Wong, Samuel Yeung-Shan; Yeoh, Eng-Kiong; Woo, Jean W
2017-04-01
According to the 2015 Quality of Death Index published by the Intelligence Unit of the Economist, Hong Kong is ranked 22nd in terms of quality of palliative care in the world, behind many other major developed countries in Asia, including Taiwan, Singapore, Japan, and South Korea. The objectives of the present study were to describe the knowledge, attitude, and preferences of the general Hong Kong adult population across different age groups regarding end-of-life (EOL) care decisions, place of care and death, as well as advance directive (AD). This was a population-based cross-sectional survey conducted by telephone. A total of 1067 adults over 30 years old were contacted through residential telephone lines using a random sampling method and were interviewed. Information on sociodemographic factors, general health status, chronic diseases, knowledge, attitude and preferences of advance decisions, EOL care, and place of death were collected. A total of 85.7% had not heard of AD, but 60.9% would prefer to make their own AD if legislated after explanation; and for those who did not prefer to have an AD, the predominant concern was the possible change of mind afterward. Adjusted logistic regression suggested that female participants were less willing to make an AD, whereas those with prior knowledge of do-not-attempt-cardiopulmonary-resuscitation significantly increased the chance of making an AD. In terms of life-sustaining treatments, a predominant 87.6% preferred to receive appropriate palliative care that gives comfort rather than to prolong life if being diagnosed to be terminally ill; 43% disagreed that doctors should generally try to keep patients alive for as long as possible; and 86.2% agreed that the patient's own wishes should determine what treatment he/she should receive. Adjusted logistic regression showed that palliative care was more preferred by age groups 50 years or above but was less preferred by those who did not care for their family members with chronic diseases. Regarding place of death, 31.2% of the participants would choose to die at home, and among those, 19.5% would still prefer to die at home even if they did not have sufficient support. Adjusted logistic regression showed a decreased trend for all older age groups from 40-49 years to 80+ years, as well as having poor self-rated health, to prefer to die at home. Being a female participant and having education level of tertiary or above, however, had higher preference for death at home. This is the first population-representative survey of the general Hong Kong adult population on the knowledge, attitude, and preferences of AD, EOL care, and place of care/death. The main implication of this study was that preferences to have autonomy over own EOL care, to receive palliative care, and to die at home were greater than the actual practice currently, highlighting the service gaps for better EOL care in the future. Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
2014-01-01
Background Limited information is available about predictors of short-term outcomes in patients with exacerbation of chronic obstructive pulmonary disease (eCOPD) attending an emergency department (ED). Such information could help stratify these patients and guide medical decision-making. The aim of this study was to develop a clinical prediction rule for short-term mortality during hospital admission or within a week after the index ED visit. Methods This was a prospective cohort study of patients with eCOPD attending the EDs of 16 participating hospitals. Recruitment started in June 2008 and ended in September 2010. Information on possible predictor variables was recorded during the time the patient was evaluated in the ED, at the time a decision was made to admit the patient to the hospital or discharge home, and during follow-up. Main short-term outcomes were death during hospital admission or within 1 week of discharge to home from the ED, as well as at death within 1 month of the index ED visit. Multivariate logistic regression models were developed in a derivation sample and validated in a validation sample. The score was compared with other published prediction rules for patients with stable COPD. Results In total, 2,487 patients were included in the study. Predictors of death during hospital admission, or within 1 week of discharge to home from the ED were patient age, baseline dyspnea, previous need for long-term home oxygen therapy or non-invasive mechanical ventilation, altered mental status, and use of inspiratory accessory muscles or paradoxical breathing upon ED arrival (area under the curve (AUC) = 0.85). Addition of arterial blood gas parameters (oxygen and carbon dioxide partial pressures (PO2 and PCO2)) and pH) did not improve the model. The same variables were predictors of death at 1 month (AUC = 0.85). Compared with other commonly used tools for predicting the severity of COPD in stable patients, our rule was significantly better. Conclusions Five clinical predictors easily available in the ED, and also in the primary care setting, can be used to create a simple and easily obtained score that allows clinicians to stratify patients with eCOPD upon ED arrival and guide the medical decision-making process. PMID:24758312
Penders, Yolanda W H; Albers, Gwenda; Deliens, Luc; Vander Stichele, Robert; Van den Block, Lieve
2015-01-01
High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness. Post-death study using random cluster sampling. Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010). Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94). Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents. © The Author(s) 2014.
Adjedj, Julien; De Bruyne, Bernard; Floré, Vincent; Di Gioia, Giuseppe; Ferrara, Angela; Pellicano, Mariano; Toth, Gabor G; Bartunek, Jozef; Vanderheyden, Marc; Heyndrickx, Guy R; Wijns, William; Barbato, Emanuele
2016-02-02
The fractional flow reserve (FFR) value of 0.75 has been validated against ischemic testing, whereas the FFR value of 0.80 has been widely accepted to guide clinical decision making. However, revascularization when FFR is 0.76 to 0.80, within the so-called gray zone, is still debatable. From February 1997 to June 2013, all patients with single-segment disease and an FFR value within the gray zone or within the 2 neighboring FFR strata (0.70-0.75 and 0.81-0.85) were included. Study end points consisted of major adverse cardiovascular events (death, myocardial infarction, and any revascularization) up to 5 years. Of 17 380 FFR measurements, 1459 patients were included. Of them, 449 patients were treated with revascularization and 1010 patients were treated with medical therapy. In the gray zone, the major adverse cardiovascular events rate was similar (37 [13.9%] versus 21 [11.2%], respectively; P=0.3) between medical therapy and revascularization, whereas a strong trend toward a higher rate of death or myocardial infarction (25 [9.4] versus 9 [4.8], P=0.06) and overall death (20 [7.5] versus 6 [3.2], P=0.059) was observed in the medical therapy group. Among medical therapy patients, a significant step-up increase in major adverse cardiovascular events rate was observed across the 3 FFR strata, especially with proximal lesion location. In revascularization patients, the major adverse cardiovascular events rate was not different across the 3 FFR strata. FFR in and around the gray zone bears a major prognostic value, especially in proximal lesions. These data confirm that FFR≤0.80 is valid to guide clinical decision making. © 2016 American Heart Association, Inc.
Point-of-Care-Testing in Acute Stroke Management: An Unmet Need Ripe for Technological Harvest
Eltzov, Evgeni; Seet, Raymond C. S.; Marks, Robert S.; Tok, Alfred I. Y.
2017-01-01
Stroke, the second highest leading cause of death, is caused by an abrupt interruption of blood to the brain. Supply of blood needs to be promptly restored to salvage brain tissues from irreversible neuronal death. Existing assessment of stroke patients is based largely on detailed clinical evaluation that is complemented by neuroimaging methods. However, emerging data point to the potential use of blood-derived biomarkers in aiding clinical decision-making especially in the diagnosis of ischemic stroke, triaging patients for acute reperfusion therapies, and in informing stroke mechanisms and prognosis. The demand for newer techniques to deliver individualized information on-site for incorporation into a time-sensitive work-flow has become greater. In this review, we examine the roles of a portable and easy to use point-of-care-test (POCT) in shortening the time-to-treatment, classifying stroke subtypes and improving patient’s outcome. We first examine the conventional stroke management workflow, then highlight situations where a bedside biomarker assessment might aid clinical decision-making. A novel stroke POCT approach is presented, which combines the use of quantitative and multiplex POCT platforms for the detection of specific stroke biomarkers, as well as data-mining tools to drive analytical processes. Further work is needed in the development of POCTs to fulfill an unmet need in acute stroke management. PMID:28771209
Albayrak, Turgay; Şencan, İrfan; Akça, Ömer; Aksoy, Hilal; Ünsal, Selim; Bülbül, İskender; Bahadır, Adem; Kasım, İsmail; Kahveci, Rabia; Özkara, Adem
2017-01-01
Background The participation of the people in health decisions may be structured in various levels. One of these is participation in decisions for the treatment. “Advanced directives” is one of the examples for the participation in decisions for the treatment. Aim We wanted to determine the decisions on advanced life support at the end-stage of life in case of a life-threatening illness for the people themselves and their first degree relatives and the factors effecting these decisions. Design and setting The cross-sectional study was conducted with volunteers among patients and patient relatives who applied to all polyclinics of the Ankara Numune Training and Research Hospital except the emergency, oncology and psychiatry polyclinics between 15.12.2012 and 15.03.2013. Method A questionnaire, the Hospital Anxiety Depression (HAD) scale, and Templer’s Death Anxiety Scale (TDA) were applied to all individuals. SPSS for Win. Ver. 17.0 and MS-Excel 2010 Starter software bundles were used for all statistical analysis and calculations. Results The participants want both themselves and their first degree relatives included in end-stage decision-making process. Therefore, the patients and their families should be informed adequately during decision making process and quality communication must be provided. Conclusion Participants who have given their end-stage decisions previously want to be treated according to these decisions. This desire can just be possible by advanced directives.When moral and material loads of end-stage process are taken into consideration, countries, in which advanced directives are practiced, should be examined well and participants’ desire should be evaluated in terms of practicability. PMID:28732071
Gambling with your life: the process of breast cancer treatment decision making in Chinese women.
Lam, Wendy Wt; Fielding, Richard; Chan, Miranda; Chow, Louis; Or, Amy
2005-01-01
Treatment decision making (TDM) studies have primarily focused on assessing TDM quality and predominantly presume rational analytic processes as the gold standard. In a grounded theory study of 22 Hong Kong Chinese women following breast surgery who completed an in-depth interview exploring the process of TDM in breast cancer (BC), narrative data showed that discovery of a breast abnormality and emotional responses to BC diagnosis influence the TDM process. Lack of guidance from surgeons impaired TDM. Decisions were, for the most part, made using intuitive, pragmatic and emotionally driven criteria in the absence of complete information. The experience of TDM, which was likened to gambling, did not end once the decision was made but unfolded while waiting for surgery and the post-operative report. In this waiting period, women were emotionally overwhelmed by fear of death and the uncertainty of the surgical outcome, and equivocated over whether they had made the 'right' choice. This suggests that Chinese women feel they are gambling with their lives during TDM. These women are particularly emotionally vulnerable whilst waiting for their surgery and the post-surgical clinical pathology results. Providing emotional support is particularly important at this time when these women are overwhelmed by uncertainty. 2004 John Wiley & Sons, Ltd.
Death Penalty Disposition in China: What Matters?
Li, Yudu; Longmire, Dennis; Lu, Hong
2018-01-01
In theory, sentencing decisions should be driven by legal factors, not extra-legal factors. However, some empirical research on the death penalty in the United States shows significant relationships between offender and victim characteristics and death sentence decisions. Despite the fact that China frequently imposes death sentences, few studies have examined these sanctions to see if similar correlations occur in China's capital cases. Using data from published court cases in China involving three violent crimes-homicide, robbery, and intentional assault-this study examines the net impact of offender's gender, race, and victim-offender relationship on death sentence decisions in China. Our overall multiple regression results indicate that, after controlling for other legal and extra-legal variables, an offender's gender, race, and victim-offender relationship did not produce similar results in China when compared with those in the United States. In contrast, it is the legal factors that played the most significant role in influencing the death penalty decisions. The article concludes with explanations and speculations on the unique social, cultural, and legal conditions in China that may have contributed to these correlations.
Stocker, Martin; van Herk, Wendy; El Helou, Salhab; Dutta, Sourabh; Fontana, Matteo S; Schuerman, Frank A B A; van den Tooren-de Groot, Rita K; Wieringa, Jantien W; Janota, Jan; van der Meer-Kappelle, Laura H; Moonen, Rob; Sie, Sintha D; de Vries, Esther; Donker, Albertine E; Zimmerman, Urs; Schlapbach, Luregn J; de Mol, Amerik C; Hoffman-Haringsma, Angelique; Roy, Madan; Tomaske, Maren; Kornelisse, René F; van Gijsel, Juliette; Visser, Eline G; Willemsen, Sten P; van Rossum, Annemarie M C
2017-08-26
Up to 7% of term and late-preterm neonates in high-income countries receive antibiotics during the first 3 days of life because of suspected early-onset sepsis. The prevalence of culture-proven early-onset sepsis is 0·1% or less in high-income countries, suggesting substantial overtreatment. We assess whether procalcitonin-guided decision making for suspected early-onset sepsis can safely reduce the duration of antibiotic treatment. We did this randomised controlled intervention trial in Dutch (n=11), Swiss (n=4), Canadian (n=2), and Czech (n=1) hospitals. Neonates of gestational age 34 weeks or older, with suspected early-onset sepsis requiring antibiotic treatment were stratified into four risk categories by their treating physicians and randomly assigned [1:1] using a computer-generated list stratified per centre to procalcitonin-guided decision making or standard care-based antibiotic treatment. Neonates who underwent surgery within the first week of life or had major congenital malformations that would have required hospital admission were excluded. Only principal investigators were masked for group assignment. Co-primary outcomes were non-inferiority for re-infection or death in the first month of life (margin 2·0%) and superiority for duration of antibiotic therapy. Intention-to-treat and per-protocol analyses were done. This trial was registered with ClinicalTrials.gov, number NCT00854932. Between May 21, 2009, and Feb 14, 2015, we screened 2440 neonates with suspected early-onset sepsis. 622 infants were excluded due to lack of parental consent, 93 were ineligible for reasons unknown (68), congenital malformation (22), or surgery in the first week of life (3). 14 neonates were excluded as 100% data monitoring or retrieval was not feasible, and one neonate was excluded because their procalcitonin measurements could not be taken. 1710 neonates were enrolled and randomly assigned to either procalcitonin-guided therapy (n=866) or standard therapy (n=844). 1408 neonates underwent per-protocol analysis (745 in the procalcitonin group and 663 standard group). For the procalcitonin group, the duration of antibiotic therapy was reduced (intention to treat: 55·1 vs 65·0 h, p<0·0001; per protocol: 51·8 vs 64·0 h; p<0·0001). No sepsis-related deaths occurred, and 9 (<1%) of 1710 neonates had possible re-infection. The risk difference for non-inferiority was 0·1% (95% CI -4·6 to 4·8) in the intention-to-treat analysis (5 [0·6%] of 866 neonates in the procalcitonin group vs 4 [0·5%] of 844 neonates in the standard group) and 0·1% (-5·2 to 5·3) in the per-protocol analysis (5 [0·7%] of 745 neonates in the procalcitonin group vs 4 [0·6%] of 663 neonates in the standard group). Procalcitonin-guided decision making was superior to standard care in reducing antibiotic therapy in neonates with suspected early-onset sepsis. Non-inferiority for re-infection or death could not be shown due to the low occurrence of re-infections and absence of study-related death. The Thrasher Foundation, the NutsOhra Foundation, the Sophia Foundation for Scientific research. Copyright © 2017 Elsevier Ltd. All rights reserved.
The Antibiotic Prescribing Pathway for Presumed Urinary Tract Infections in Nursing Home Residents.
Kistler, Christine E; Zimmerman, Sheryl; Scales, Kezia; Ward, Kimberly; Weber, David; Reed, David; McClester, Mallory; Sloane, Philip D
2017-08-01
Due to the high rates of inappropriate antibiotic prescribing for presumed urinary tract infections (UTIs) in nursing home (NH) residents, we sought to examine the antibiotic prescribing pathway and the extent to which it agrees with the Loeb criteria; findings can suggest strategies for antibiotic stewardship. Chart review of 260 randomly-selected cases from 247 NH residents treated with an antibiotic for a presumed UTI in 31 NHs in North Carolina. We examined the prescribing pathway from presenting illness, to the prescribing event, illness work-up and subsequent clinical events including emergency department use, hospitalization, and death. Analyses described the decision-making processes and outcomes and compared decisions made with Loeb criteria for initiation of antibiotics. Of 260 cases, 60% had documented signs/symptoms of the presenting illness and 15% met the Loeb criteria. Acute mental status change was the most commonly documented sign/symptom (24%). NH providers (81%) were the most common prescribers and ciprofloxacin (32%) was the most commonly prescribed antibiotic. Fourteen percent of presumed UTI cases included a white blood cell count, 71% included a urinalysis, and 72% had a urine culture. Seventy-five percent of cultures grew at least one organism with ≥100,000 colony-forming units/milliliter and 12% grew multi-drug resistant organisms; 28% of antibiotics were prescribed for more than 7 days, and 7% of cases had a subsequent death, emergency department visit, or hospitalization within 7 days. Non-specific signs/symptoms appeared to influence prescribing more often than urinary tract-specific signs/symptoms. Prescribers rarely stopped antibiotics, and a minority prescribed for overly long periods. Providers may need additional support to guide the decision-making process to reduce antibiotic overuse and antibiotic resistance. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.
Pediatric donation after circulatory determination of death (pDCD): A narrative review.
Weiss, Matthew J; Sherry, Wendy; Hornby, Laura
2018-04-14
Pediatric donation after circulatory death (pDCD) is an established pathway for organ donation. It remains, however, a relatively rare event worldwide, and most clinicians outside of the pediatric intensive care unit (PICU) are unfamiliar with it. The goal of this review is to introduce the processes and concepts of pDCD. While most children die in circumstances that would not allow pDCD, many children that die after withdrawal of life sustaining therapy (WLST) may be eligible for donation of some organs. The potential benefits of this practice to patients on the wait list are well known, but donation can also be an opportunity to honor a patient's or family's desire to altruistically improve the lives of others. Offering the possibility of donation requires careful attention to ethical principles to ensure that conflicts of interest are avoided and that the family is free to make an independent, fully informed decision. Doing so allows families and decision makers the autonomy to decide if donation is something they wish to incorporate into end-of-life care. Copyright © 2018 Elsevier Ltd. All rights reserved.
Families, dependencies, and the moral ground of health savings accounts.
Bishop, Jeffrey P
2012-12-01
Health Savings Accounts have been marginalized in the West. In Singapore, however, they are foundational to the financing of health care. In this brief essay, I shall begin to sketch a justification for Health Savings Accounts. The family has always been thought of as a mere prolegomena to the polis and to be primarily about securing the goods of material life: food, shelter, intimacy. I shall first explore the recent scientific literature on the communal nature of human thriving and follow it with a phenomenological account of human dependency. I shall claim that in securing the material means to sustain life, the family is also involved in the creation of the life-world of the child. That means that the bare necessities of life met in families are not merely about sustaining bodily life but are also part of the meaning-making aspects of life. The family then should have recourse to the material means of life-and-death decisions, because it is in these life-and-death decisions that the families' life-world of values is to be deployed.
Reilly, Deirdre; Huws, Jaci; Hastings, Richard; Vaughan, Frances
2010-12-01
Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured interviews were used to explore the experiences of 6 couples whose child with Down syndrome and a CHC had died. The interviews were analyzed qualitatively using interpretative phenomenological analysis (IPA), and 4 themes emerged: dilemmas associated with the dual diagnosis; treatment decisions during the life and the death of their child ("We had to make a decision"); ways couples coped when bereaved ("We weren't really going through it together"); and ripples from the child's life. There was a high degree of similarity of experience within couples. Differences between couples existed in their experiences of coping and supporting each other. Practical implications include the importance of considering the specific needs of couples, individuals, and fathers within partnerships.
New Elements To Consider When Modeling the Hazards Associated with Botulinum Neurotoxin in Food.
Ihekwaba, Adaoha E C; Mura, Ivan; Malakar, Pradeep K; Walshaw, John; Peck, Michael W; Barker, G C
2016-01-15
Botulinum neurotoxins (BoNTs) produced by the anaerobic bacterium Clostridium botulinum are the most potent biological substances known to mankind. BoNTs are the agents responsible for botulism, a rare condition affecting the neuromuscular junction and causing a spectrum of diseases ranging from mild cranial nerve palsies to acute respiratory failure and death. BoNTs are a potential biowarfare threat and a public health hazard, since outbreaks of foodborne botulism are caused by the ingestion of preformed BoNTs in food. Currently, mathematical models relating to the hazards associated with C. botulinum, which are largely empirical, make major contributions to botulinum risk assessment. Evaluated using statistical techniques, these models simulate the response of the bacterium to environmental conditions. Though empirical models have been successfully incorporated into risk assessments to support food safety decision making, this process includes significant uncertainties so that relevant decision making is frequently conservative and inflexible. Progression involves encoding into the models cellular processes at a molecular level, especially the details of the genetic and molecular machinery. This addition drives the connection between biological mechanisms and botulism risk assessment and hazard management strategies. This review brings together elements currently described in the literature that will be useful in building quantitative models of C. botulinum neurotoxin production. Subsequently, it outlines how the established form of modeling could be extended to include these new elements. Ultimately, this can offer further contributions to risk assessments to support food safety decision making. Copyright © 2015 Ihekwaba et al.
Schweda, Mark; Schicktanz, Silke; Raz, Aviad; Silvers, Anita
2017-02-17
End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. The paper is based on a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel (n = 82). Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. As the group discussions indicate, there are no clear-cut positions anchored in "nationality," "culture," or "religion." Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed.
Shen, Megan Johnson; Nelson, Christian J; Peters, Ellen; Slovin, Susan F; Hall, Simon J; Hall, Matt; Herrera, Phapichaya Chaoprang; Leventhal, Elaine A; Leventhal, Howard; Diefenbach, Michael A
2015-05-01
Prostate cancer survivors with a rising prostate-specific antigen (PSA) level have few treatment options, experience a heightened state of uncertainty about their disease trajectory that might include the possibility of cancer metastasis and death, and often experience elevated levels of distress as they have to deal with a disease they thought they had conquered. Guided by self-regulation theory, the present study examined the cognitive and affective processes involved in shared decision making between physicians and patients who experience a rising PSA after definitive treatment for prostate cancer. In-depth interviews were conducted with 34 prostate cancer survivors who had been diagnosed with a rising PSA (i.e., biochemical failure) within the past 12 months. Survivors were asked about their experiences and affective responses after being diagnosed with a rising PSA and while weighing potential treatment options. In addition, patients were asked about their decision-making process for the initial prostate cancer treatment. Compared with the initial diagnosis, survivors with a rising PSA reported increased negative affect following their diagnosis, concern about the treatability of their disease, increased planning and health behavior change, heightened levels of worry preceding doctor appointments (especially prior to the discussion of PSA testing results), and a strong reliance on physicians' treatment recommendations. Prostate cancer survivors' decision-making processes for the treatment of a rising PSA are markedly different from those of the initial diagnosis of prostate cancer. Because patients experience heightened distress and rely more heavily on their physicians' recommendations with a rising PSA, interactions with the health care provider provide an excellent opportunity to address and assist patients with managing the uncertainty and distress inherent with rising PSA levels. © The Author(s) 2014.
Tarzian, Anita J; Neal, Maggie T; O'Neil, J Anne
2005-02-01
Individuals who are homeless may encounter various barriers to obtaining quality end-of-life (EOL) care, including access barriers, multiple sources of discrimination, and lack of knowledge among health care providers (HCPs) of their preferences and decision-making practices. Planning for death with individuals who have spent so much energy surviving requires an understanding of their experiences and preferences. This study sought to increase HCPs' awareness and understanding of homeless or similarly marginalized individuals' EOL experiences and treatment preferences. Focus groups were conducted with homeless individuals using a semi-structured interview guide to elicit participants' EOL experiences, decision-making practices, and personal treatment preferences. Five focus groups were conducted with 20 inner-city homeless individuals (4 per group) at a free urban health care clinic for homeless individuals in the United States. Sixteen of the 20 participants were African American; 4 were Caucasian. None were actively psychotic. All had experienced multiple losses and drug addiction. Five main themes emerged: valuing an individual's wishes; acknowledging emotions; the primacy of religious beliefs and spiritual experience; seeking relationship-centered care; and reframing advance care planning. The narrative process of this qualitative study uncovered an approach to EOL decision-making in which participants' reasoning was influenced by emotions, religious beliefs, and spiritual experience. Relationship-centered care, characterized by compassion and respectful, two-way communication, was obvious by its described absence--reasons for this are discussed. Recommendations for reframing advance care planning include ways for HCPs to transform advance care planning from that of a legal document to a process of goal-setting that is grounded in human connection, respect, and understanding.
Ko, Winne; Miccinesi, Guido; Beccaro, Monica; Moreels, Sarah; Donker, Gé A; Onwuteaka-Philipsen, Bregje; Alonso, Tomás V; Deliens, Luc; Van den Block, Lieve
2014-01-01
This study aimed to explore clinical and care-related factors associated with fulfilling cancer patients' preference for home death across four countries: Belgium (BE), The Netherlands (NL), Italy (IT), and Spain (ES). A mortality follow-back study was undertaken from 2009 to 2011 via representative networks of general practitioners (GPs). The study included all patients aged 18 and over who had died of cancer and whose home death preference and place of death were known by the GP. Factors associated with meeting home death preference were tested using multivariable logistic regressions. Among 2,048 deceased patients, preferred and actual place of death was known in 42.6 percent of cases. Home death preference met ranged from 65.5 to 90.9 percent. Country-specific factors included older age in BE, and decision-making capacity and being female in the NL. GPs' provision of palliative care was positively associated with meeting home death preference. Odds ratios (ORs) were: BE: 9.9 (95 percent confidence interval [CI] 3.7-26.6); NL: 9.7 (2.4-39.9); and IT: 2.6 (1.2-5.5). ORs for Spain are not shown because a multivariate model was not performed. Those who develop policy to facilitate home death need to examine available resources for primary end-of-life care.
The meaning of self-reported death anxiety in advanced cancer.
Tong, Eryn; Deckert, Amy; Gani, Nina; Nissim, Rinat; Rydall, Anne; Hales, Sarah; Rodin, Gary; Lo, Chris
2016-09-01
Death anxiety is important but understudied in palliative care. New self-report measurements have been developed, but their interpretation and clinical utility may not be evident. To inform our understanding of death anxiety in patients with advanced cancer by exploring the relationship between this self-reported symptom and its clinical presentation. Participants were part of a psychotherapy trial in advanced cancer. First therapy session transcripts were analyzed using interpretive description in patients reporting low, moderate, and high death anxiety on the Death and Dying Distress Scale (DADDS). A total of 16 participants (10 women and 6 men) with advanced or metastatic cancer were sampled from the Princess Margaret Cancer Centre, Toronto, Canada. Six participants reported low death anxiety scores (Death and Dying Distress Scale: 0-19), five moderate (Death and Dying Distress Scale: 20-50), and five high (Death and Dying Distress Scale: 51-75). The low death anxiety group exhibited psychological readiness for death, or contrastingly, non-reflectiveness about death. The moderate group recognized the imminence of mortality, which impacted treatment decisions and future plans. Prior experience with death was discussed as raising the salience of mortality. The high group felt dominated by powerful emotions and could not make sense of their situation. Their distress was exacerbated by substantial relational concerns. Self-reported death anxiety is affected by the awareness and ability to reflect on mortality. Death and Dying Distress Scale scores may facilitate exploration of this symptom as part of a clinical assessment and may serve to guide treatment approaches. Greater attention to death anxiety is consistent with and recommended by contemporary approaches to palliative care. © The Author(s) 2016.
2011-01-01
Background A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve interviews with staff and informal care-givers closely involved in the care of cancer patients who received continuous sedation until death. Discussion To our knowledge, this is one of the few studies which seek to take a qualitative perspective on clinical decision making surrounding the use of continuous sedation until death and the only one which includes the perspectives of nurses, physicians, as well as bereaved informal care-givers. It has several potential strengths, weaknesses, opportunities and threats associated with the specific design of the study, as well as with the sensitive nature of the topic and the different frameworks for ethical review in the participating countries. PMID:21375747
Negative freedom and death in the United States.
Ackerson, Leland K; Subramanian, S V
2010-11-01
Personal freedoms have been characterized as "positive" (freedom to pursue opportunities) and "negative" (freedom from external constraints on decision making). An ecological analysis of US data revealed a strong positive association (r = 0.41; P = .003) between state-level negative personal freedom (defined in terms of regulation of personal behavior) and state-level age-adjusted rates of unintentional injury. A conceptual emphasis on positive freedom construed as freedom to pursue a life without risk of unintentional injury could help motivate a conversation to improve public health.
Survey of United States Army Physician Opinion: The Issue of Written ’Do Not Resuscitate’ Orders
1984-08-01
Westminister Press, 1975), p. 176-7. 71Cushing, p. 29. 72Alexander, p. 26. 73Kevin M. McIntyre, "Mediolegal Aspects of Decision Making in Resuscitation and Life...34Physicians Opinions Toward Legislation Defining Death and Withholding Life Support," Southern Medical Journal 74 (February 1981): 215-18. 82Norman K...Louis S. Let the Patient Decide. Philadelphia: The Westminister Press, 1978. Browning, Mary H. and Lewis, Edith P. comps. The Dying Patient: A Nursing
Prenatal Exposure to Angiotensin II Receptor Blockers and Hemodynamic Effects on the Newborn.
Rodríguez-Castaño, MaJosé; Corredera, Araceli; Aleo, Esther; Arruza, Luis
2015-04-01
Angiotensin II receptor blockers (ARBs) are potent antihypertensive agents that block the renin angiotensin aldosterone system (RAS). Their use in pregnancy may cause malformations, oligoanuria, hypotension, and death. Hypotension is observed up to 15% of cases and is described as refractory to volume and inotropic support, although its pathophysiology is unknown. We present a case of prenatal exposure to ARBs in order to characterize the hemodynamic compromise in the newborn, help in decision-making, and guide the therapeutic approach to these patients.
[Twin pregnancy in a unicornuate uterus with a rudimentary horn].
Ejnès, L; Desprez, B; Bongain, A; Gillet, J Y
2003-01-01
We describe the case of a rudimentary horn pregnancy coexistent with an intrauterine pregnancy. This situation is usually associated with rupture of the rudimentary horn and death of the correspondent twin. This is the first report on a multiple gestation with the two siblings successfully delivered by caesarean section in the two horns of a unicornuate uterus with rudimentary horn before any complication. Since the maternal mortality is higher in this situation, early ultrasound diagnosis is important to make the right decisions.
The Patient Self-Determination Act. A matter of life and death.
Kelley, K
1995-03-01
The Patient Self-Determination Act (PSDA) is a federal law, and compliance is mandatory. It is the purpose of this act to ensure that a patient's right to self-determination in health care decisions be communicated and protected. Through advance directives--the living will and the durable power of attorney--the right to accept or reject medical or surgical treatment is available to adults while competent, so that in the event that such adults become incompetent to make decisions, they would more easily continue to control decisions affecting their health care. Without advance directives and the proper adherence to such directives, former President Richard Nixon and former First Lady Jacqueline Kennedy Onassis might still be alive today, in persistent vegetative states. This article examines the history of the act, its importance to each individual, the clinical, ethical and legal issues, and the role of health care professionals in effectively implementing and ensuring compliance of the PSDA.
Is Israel ready for disease management?
Linden, Ariel
2006-10-01
Approximately 60% of all worldwide deaths are caused by chronic disease resulting from modifiable health behaviors. In the United States, structured programs tailored to identify and modify health behaviors of patients with chronic illness have grown into a robust industry called disease management. DM is premised upon the basic assumption that health services utilization and morbidity can be reduced for those with chronic illness by augmenting traditional episodic medical care services and support between physician visits. Given that Israel and the U.S. have similar demographics in their chronically ill populations, it would make intuitive sense for Israel to replicate efforts made in the U.S. to incorporate DM strategies. This paper provides a conceptual framework of how DM could be integrated within the current organizational structure of the Israeli healthcare system, which is uniquely conducive to the implementation of DM on a population-wide basis. While ultimately the decision to invest in DM lies with stakeholders at various institutional levels in Israel, this paper is intended to provide direction and support for that decision-making process.
Gu, Xiaoli; Cheng, Wenwu; Chen, Menglei; Liu, Minghui; Zhang, Zhe
2015-01-01
There are a number of studies dedicated to characteristics of sedation, but these studies are mostly bound to western country practices. The aim of this study is to describe the characteristics of patients who suffered from cancer and who had been sedated until their death in Shanghai, China. Retrospective medical data of 244 terminally ill cancer patients including 82 sedated patients were collected. Data collected included demographic characteristics, disease-related characteristics and details of the sedation. In sedated cases, patients and/or caregivers gave the consent to start palliative sedation due to unmanageable symptoms. On average, sedation was performed 24.65(±1.78)hours before death. Agitated delirium and dyspnea were the most frequent indications for palliative sedation. There was no significant difference in survival time from admission till death between sedated and non-sedated patients (p > 0.05). Palliative sedation is effective for reducing terminally ill cancer patients' suffering without hastening death. Prospective research is needed to determine the optimal conditions for Chinese patients including indications, decision making process, informed consent, cultural and ethical issues, type of sedation and drugs.
Identification of Barriers to Pediatric Care in Limited-Resource Settings: A Simulation Study.
Shilkofski, Nicole; Hunt, Elizabeth A
2015-12-01
Eighty percent of the 10 million annual deaths in children aged <5 years in developing countries are estimated to be avoidable, with improvements in education for pediatric emergency management being a key factor. Education must take into account cultural considerations to be effective. Study objectives were: (1) to use simulation to identify factors posing barriers to patient care in limited resource settings (LRS); and (2) to understand how simulations in LRS can affect communication and decision-making processes. A qualitative study was conducted at 17 different sites in 12 developing countries in Asia, Latin America, and Africa. Data from observations of 68 in situ simulated pediatric emergencies were coded for thematic analysis. Sixty-two different "key informants" were interviewed regarding perceived benefit of simulations. Coding of observations and interviews yielded common themes: impact of culture on team hierarchy, impact of communication and language barriers on situational awareness, systematic emergency procedures, role delineation, shared cognition and resource awareness through simulation, logistic barriers to patient care, and use of recognition-primed decision-making by experienced clinicians. Changes in clinical environments were implemented as a result of simulations. Ad hoc teams in LRS face challenges in caring safely for patients; these include language and cultural barriers, as well as environmental and resource constraints. Engaging teams in simulations may promote improved communication, identification of systems issues and latent threats to target for remediation. There may be a role for training novices in use of recognition-primed or algorithmic decision-making strategies to improve rapidity and efficiency of decisions in LRS. Copyright © 2015 by the American Academy of Pediatrics.
Yamin, Alicia Ely; Bazile, Junior; Knight, Lucia; Molla, Mitike; Maistrellis, Emily; Leaning, Jennifer
2015-06-01
Driven by the need to better understand the full and intergenerational toll of maternal mortality (MM), a mixed-methods study was conducted in four countries in sub-Saharan Africa to investigate the impacts of maternal death on families and children. The present analysis identifies gender as a fundamental driver not only of maternal, but also child health, through manifestations of gender inequity in household decision making, labor and caregiving, and social norms dictating the status of women. Focus group discussions were conducted with community members, and in depth qualitative interviews with key-informants and stakeholders, in Tanzania, Ethiopia, Malawi, and South Africa between April 2012 and October 2013. Findings highlight that socially constructed gender roles, which define mothers as caregivers and fathers as wage earners, and which limit women's agency regarding childcare decisions, among other things, create considerable gaps when it comes to meeting child nutrition, education, and health care needs following a maternal death. Additionally, our findings show that maternal deaths have differential effects on boy and girl children, and exacerbate specific risks for girl children, including early marriage, early pregnancy, and school drop-out. To combat both MM, and to mitigate impacts on children, investment in health services interventions should be complemented by broader interventions regarding social protection, as well as aimed at shifting social norms and opportunity structures regarding gendered divisions of labor and power at household, community, and society levels. Copyright © 2015 The Authors. Published by Elsevier Ltd.. All rights reserved.
Deaths following prehospital safety incidents: an analysis of a national database.
Yardley, Iain E; Donaldson, Liam J
2016-10-01
Ensuring patient safety in the prehospital environment is difficult due to the unpredictable nature of the workload and the uncontrolled situations that care is provided in. Studying previous safety incidents can help understand risks and take action to mitigate them. We present an analysis of safety incidents related to patient deaths in ambulance services in England. All incidents related to a patient death reported to the National Reporting and Learning System from an ambulance service between 1 June 2010 and 31 October 2012 were subjected to thematic analysis to identify the failings that led to the incident. Sixty-nine incidents were analysed, equating to one safety incident-related death per 168 000 calls received. Just three event categories were identified: delayed response (59%, 41/69), shortfalls in clinical care (35%, 24/69) and injury during transit (6%, 4/69). Primary failures differed for the categories: problems with dispatch caused the majority of delays in response, with equipment problems and bad weather accounting for the remainder. Failure to provide necessary care was predominantly caused by clinical misjudgements by ambulance staff and equipment issues underlay incidents that led to a patient injury. Improvements intended to address safety related mortality in the ambulance service should include ensuring adequate equipping and resourcing of ambulance services, improving coordination and decision-making during dispatch and supporting individual staff members in the difficult decisions they are faced with. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
González-Méndez, M Isabel; López-Rodríguez, Luís
2017-12-11
The decrease in potential donation after brain death has resulted in a need to evaluate alternative sources. Donation after cardiac death is a good option. The objectives of this article are to describe the Maastricht type iii controlled organ donation characteristics and to determine end-of-life care and the role of nurses in the donation process. In this type of donation, cardiocirculatory arrest is predictable after the limitation of life sustaining treatments. These are patients for whom there are no effective therapy options and, in the context of an organised and planned practice involving all the professionals involved in the care of the patient, the decision is made, in consultation with the family, to withdraw life support measures. This limitation of life sustaining treatments is never carried out with the aim of making a Maastricht iii donation, but to avoid prolonging the dying process through useless and possibly degrading interventions. The obligation of the health team is to provide a dignified death and this not only includes the absence of pain, but the patient and their family must be guaranteed a feeling of calmness and serenity. Once the decision has been taken to withhold or withdraw measures, the nurse has an important role in the implementation of a palliative care plan in where physicians, nurses and patients/families should be involved and whose focus should be on patients' dignity and comfort, considering their physical, psychological and spiritual needs. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.
Bakibinga, Pauline; Kamande, Eva; Omuya, Milka; Ziraba, Abdhalah K; Kyobutungi, Catherine
2017-01-01
Introduction Improving maternal and newborn survival remains major aspirations for many countries in the Global South. Slum settlements, a result of rapid urbanisation in many developing countries including Kenya, exhibit high levels of maternal and neonatal mortality. There are limited referral mechanisms for sick neonates and their mothers from the community to healthcare facilities with ability to provide adequate care. In this study, we specifically plan to develop and assess the added value of having community health volunteers (CHVs) use smartphones to identify and track mothers and children in a bid to reduce pregnancy-related complications and newborn deaths in the urban slums of Kamukunji subcounty in Nairobi, Kenya. Methods and analysis This is a quasi-experimental study. We are implementing an innovative, mHealth application known as mobile Partnership for Maternal, Newborn and Child Health (mPAMANECH) which uses dynamic mobile phone and web-portal solutions to enable CHVs make timely decisions on the best course of action in their management of mothers and newborns at community level. The application is based on existing guidelines and protocols in use by CHVs. Currently, CHVs conduct weekly home visits and make decisions from memory or using unwieldy manual tools, and thus prone to making errors. mPAMANECH has an in-built algorithm that makes it easier, faster and more likely for CHVs to make the right management decision. We are working with a network of selected CHVs and maternity centres to pilot test the tool. To measure the impact of the intervention, baseline and end-line surveys will be conducted. Data will be obtained through qualitative and quantitative methods. Ethics and dissemination Ethical approval for the study was obtained from the African Medical Research Foundation. Key messages from the results will be packaged and disseminated through meetings, conference presentations, reports, fact sheets and academic publications to facilitate uptake by policy-makers. PMID:28729309
ERIC Educational Resources Information Center
Tuffrey-Wijne, Irene; Giatras, Nikoletta; Butler, Gary; Cresswell, Amanda; Manners, Paula; Bernal, Jane
2013-01-01
Background: There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim: The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual…
Ganatra, Bela; Johnston, Heidi Bart
2002-01-01
South Asia (Bangladesh, India, Nepal, Pakistan, and Sri Lanka) is home to 28% of the world's people and accounts for about a third (30%) of the world's maternal deaths. Thirteen percent of all maternal deaths in South Asia are attributed to complications of unsafe abortion and are almost entirely preventable. This article reviews the legal, health system, and sociocultural barriers to safe abortion and suggests strategies to reduce abortion-related morbidity and mortality. Restrictive laws hamper safe abortion in most of the region, but even where laws are more liberal, limited awareness of the law has been a barrier to access. Such health system barriers as an insufficient number of trained providers, inequitable distribution of services, and excessive costs have contributed to death from unsafe abortion. Sociocultural attitudes, including the right of male relatives to make reproductive decisions, the emphasis on male heirs, and the strong social stigma against extramarital pregnancy also put women at risk. Government and other institutions must strive to prevent abortion-related death and disability by making safe abortion services accessible to the fullest extent of the law. Health systems need to provide emergency care for complications and postabortion contraceptive counseling, use appropriate technology, and allow nonphysician providers to deliver care. Safe abortion care programs need to address the needs of the local community, particularly the needs of socially and economically vulnerable subgroups, such as the unmarried and adolescents.
Microrisks for medical decision analysis.
Howard, R A
1989-01-01
Many would agree on the need to inform patients about the risks of medical conditions or treatments and to consider those risks in making medical decisions. The question is how to describe the risks and how to balance them with other factors in arriving at a decision. In this article, we present the thesis that part of the answer lies in defining an appropriate scale for risks that are often quite small. We propose that a convenient unit in which to measure most medical risks is the microprobability, a probability of 1 in 1 million. When the risk consequence is death, we can define a micromort as one microprobability of death. Medical risks can be placed in perspective by noting that we live in a society where people face about 270 micromorts per year from interactions with motor vehicles. Continuing risks or hazards, such as are posed by following unhealthful practices or by the side-effects of drugs, can be described in the same micromort framework. If the consequence is not death, but some other serious consequence like blindness or amputation, the microrisk structure can be used to characterize the probability of disability. Once the risks are described in the microrisk form, they can be evaluated in terms of the patient's willingness-to-pay to avoid them. The suggested procedure is illustrated in the case of a woman facing a cranial arteriogram of a suspected arterio-venous malformation. Generic curves allow such analyses to be performed approximately in terms of the patient's sex, age, and economic situation. More detailed analyses can be performed if desired. Microrisk analysis is based on the proposition that precision in language permits the soundness of thought that produces clarity of action and peace of mind.
Pardosi, Jerico Franciscus; Parr, Nick; Muhidin, Salut
2015-11-01
Indonesia's infant mortality rates are among the highest in South-East Asia, and there are substantial variations between its sub-national regions. This qualitative study aims to explore early mortality-related health service provision and gender inequity issues based on mothers' pregnancy, delivery and early-age survival experience in Ende district, Nusa Tenggara Timur province. Thirty-two mothers aged 18-45 years with at least one birth in the previous five years were interviewed in depth in May 2013. The results show most mothers have little knowledge about the danger signs for a child's illness. Mothers with early-age deaths generally did not know the cause of death. Very few mothers had received adequate information on maternal and child health during their antenatal and postnatal visits to the health facility. Some mothers expressed a preference for using a traditional birth attendant, because of their ready availability and the more extensive range of support services they provide, compared with local midwives. Unprofessional attitudes displayed by midwives were reported by several mothers. As elsewhere in Indonesia, the power of health decision-making lies with the husband. Policies aimed at elevating mothers' roles in health care decision-making are discussed as measures that would help to improve early-age survival outcomes. Widening the public health insurance distribution, especially among poorer mothers, and equalizing the geographical distribution of midwives and health facilities are recommended to tackle geographical inequities and to increase early-age survival in Ende district.
Decision modeling in donation after circulatory death liver transplantation.
McLean, Kenneth A; Camilleri-Brennan, Julian; Knight, Stephen R; Drake, Thomas M; Ots, Riinu; Shaw, Catherine A; Wigmore, Stephen J; Harrison, Ewen M
2017-05-01
Donation after circulatory death (DCD) liver allografts are increasingly used for transplantation. However, the posttransplantation clinical and quality of life outcomes of DCD recipients are traditionally considered to be inferior compared with donation after brain death (DBD) allograft recipients. Decision making for such marginal organs can be difficult. This study investigated the optimal decision to accept or decline a DCD liver allograft for a patient based on their current health. A Markov decision process model was constructed to predict the 5-year clinical course of patients on the liver transplant waiting list. Clinical outcomes were determined from the UK transplant registry or appropriate literature. Quality-adjusted life years (QALYs) were determined using the condition-specific short form of liver disease quality of life (SF-LDQoL) questionnaire. There were 293/374 (78.3%) eligible patients who completed the SF-LDQoL questionnaire. A total of 73 respondents (24.9%) were before transplant and 220 were after transplant (DBD recipient, 56.3%; DCD recipient, 8.5%; ischemic cholangiopathy patient, 2.4%; retransplant recipient, 7.9%). Predictive modeling indicated that QALYs gained at 5 years were significantly higher in DCD recipients (3.77; 95% confidence interval [CI], 3.44-4.10) compared with those who remained on the waiting list for a DBD transplant with Model for End-Stage Liver Disease (MELD) scores of 15-20 (3.36; 95% CI, 3.28-3.43), or >20 (3.07; 95% CI, 3.00-3.14). There was no significant advantage for individuals with MELD scores <15 (3.55; 95% CI, 3.47-3.63). In conclusion, this model predicts that patients on the UK liver transplant waiting list with MELD scores >15 should receive an offered DCD allograft based on the QALYs gained at 5 years. This analysis only accounts for donor-recipient risk pairings seen in current practice. The optimal decision for patients with MELD scores <15 remains unclear. However, a survival benefit was observed when a DCD organ was accepted. Liver Transplantation 23 594-603 2017 AASLD. © 2016 by the American Association for the Study of Liver Diseases.
SARS and hospital priority setting: a qualitative case study and evaluation.
Bell, Jennifer A H; Hyland, Sylvia; DePellegrin, Tania; Upshur, Ross E G; Bernstein, Mark; Martin, Douglas K
2004-12-19
Priority setting is one of the most difficult issues facing hospitals because of funding restrictions and changing patient need. A deadly communicable disease outbreak, such as the Severe Acute Respiratory Syndrome (SARS) in Toronto in 2003, amplifies the difficulties of hospital priority setting. The purpose of this study is to describe and evaluate priority setting in a hospital in response to SARS using the ethical framework 'accountability for reasonableness'. This study was conducted at a large tertiary hospital in Toronto, Canada. There were two data sources: 1) over 200 key documents (e.g. emails, bulletins), and 2) 35 interviews with key informants. Analysis used a modified thematic technique in three phases: open coding, axial coding, and evaluation. Participants described the types of priority setting decisions, the decision making process and the reasoning used. Although the hospital leadership made an effort to meet the conditions of 'accountability for reasonableness', they acknowledged that the decision making was not ideal. We described good practices and opportunities for improvement. 'Accountability for reasonableness' is a framework that can be used to guide fair priority setting in health care organizations, such as hospitals. In the midst of a crisis such as SARS where guidance is incomplete, consequences uncertain, and information constantly changing, where hour-by-hour decisions involve life and death, fairness is more important rather than less.
Residential aged care residents and components of end of life care in an Australian hospital.
Leong, Laurence Jee Peng; Crawford, Gregory Brian
2018-06-09
With ageing of Australians, the numbers of residential aged care (RAC) residents is rising. This places a spotlight on decisions about appropriate care for this population, including hospitalisation and end-of-life (EOL) care. The aim was to study a sample of RAC residents who attended and died in hospital, to quantify measurable components of EOL care so as to describe the extent of palliative care required. A retrospective case-note review of hospital records was conducted in Adelaide, Australia. Participants were 109 RAC residents who attended from July 2013 to June 2014 and died in hospital. Measurements were advance care planning, health care input from the RAC facilities to hospital and components of EOL care. Residents with and without advanced dementia were compared. Advance care directives (ACDs) were present from 11 to 50%, and advance care plans (ACPs) at 60%. There were more ACPs, resuscitation orders (for/against) and do-not-hospitalise orders in residents with advanced dementia than those without. General practitioner (GP) and extended care paramedic (ECP) input on decisions for hospital transfer were 30% and 1 %. Mean hospital stay to death was 5.2 days. For residents admitted under non-palliative care teams, specialist palliative care (SPC) was needed for phone advice in 5%, consultation in 45%, transfer to palliative care unit in 37%, and takeover by SPC team in 19%. Mean number of documented goals-of-care discussions with family/caregiver was 1.7. In the last 3 days of life, the mean daily number of doses of EOL medications was 4.2. Continuous subcutaneous infusion was commenced in 35%. Staff in RAC need to be adequately resourced to make complex decisions about whether to transfer to hospital. RAC nurses are mainly making these decisions as GP and ECP input were suboptimal. Ways to support nurses and optimise decision-making are needed. Advance care planning can be improved, especially documentation of EOL wishes and hospitalisation orders. By describing the components of EOL care, it is hoped providers and policy makers have more information to assist with making decisions about what is the most appropriate care for this population.
Hersch, Jolyn; McGeechan, Kevin; Barratt, Alexandra; Jansen, Jesse; Irwig, Les; Jacklyn, Gemma; Houssami, Nehmat; Dhillon, Haryana; McCaffery, Kirsten
2017-10-06
In a randomised controlled trial, we found that informing women about overdetection changed their breast screening decisions. We now present a mediation analysis exploring the psychological pathways through which study participants who received the intervention processed information about overdetection and how this influenced their decision-making. We examined a series of potential mediators in the causal chain between exposure to overdetection information and women's subsequently reported breast screening intentions. Serial multiple mediation analysis within a randomised controlled trial. New South Wales, Australia. 811 women aged 48-50 years with no personal history of breast cancer. Two versions of a decision aid giving women information about breast cancer deaths averted and false positives from mammography screening, either with (intervention) or without (control) information on overdetection. Intentions to undergo breast cancer screening in the next 2-3 years. Knowledge about overdetection, worry about breast cancer, attitudes towards breast screening and anticipated regret. The effect of information about overdetection on women's breast screening intentions was mediated through multiple cognitive and affective processes. In particular, the information led to substantial improvements in women's understanding of overdetection, and it influenced-both directly and indirectly via its effect on knowledge-their attitudes towards having screening. Mediation analysis showed that the mechanisms involving knowledge and attitudes were particularly important in determining women's intentions about screening participation. Even in this emotive context, new information influenced women's decision-making by changing their understanding of possible consequences of screening and their attitudes towards undergoing it. These findings emphasise the need to provide good-quality information on screening outcomes and to communicate this information effectively, so that women can make well-informed decisions. This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ACTRN12613001035718) on 17 September 2013. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Management of the geriatric trauma patient at risk of death: therapy withdrawal decision making.
Trunkey, D D; Cahn, R M; Lenfesty, B; Mullins, R
2000-01-01
The management of geriatric injured patients admitted to a trauma center includes the selective decision to provide comfort care only, including withdrawal of therapy, and a choice to not use full application of standard therapies. The decision makers in this process include multiple individuals in addition to the patient. Retrospective review of documentation by 2 blinded reviewers of the cohort of patients over a recent 5-year period (1993-1997). Trauma service of a level I trauma center. A convenience sample of patients aged 65 years and older who died, and whose medical record was available for review. Patients were categorized as having withdrawal of therapy, and documentation in the medical record of who made the assessment decisions and recommendations, and to what extent the processes of care were documented. Among 87 geriatric trauma patients who died, 47 had documentation interpreted as indicating a decision was made to withdraw therapy. In only a few circumstances was the patient capable of actively participating in these decisions. The other individuals involved in recommendations for withdrawal of therapy were, in order of prevalence, the treating trauma surgeon, family members (as proxy reporting the patient's preferences), or a second physician. Documentation regarding the end-of-life decisions was often fragmentary, and in some cases ambiguous. Copies of legal advance directives were rarely available in the medical record, and ethics committee participation was used only once. Withdrawal of therapy is a common event in the terminal care of geriatric injured patients. The process for reaching a decision regarding withdrawal of therapy is complex because in most circumstances patients' injuries preclude their full participation. Standards for documentation of essential information, including patients' preferences and decision-making ability, should be developed to improve the process and assist with recording these complicated decisions that often occur over several days of discussion.
Clergy Views on a Good Versus a Poor Death: Ministry to the Terminally Ill.
LeBaron, Virginia T; Cooke, Amanda; Resmini, Jonathan; Garinther, Alexander; Chow, Vinca; Quiñones, Rebecca; Noveroske, Sarah; Baccari, Andrew; Smith, Patrick T; Peteet, John; Balboni, Tracy A; Balboni, Michael J
2015-12-01
Clergy are often important sources of guidance for patients and family members making medical decisions at the end-of-life (EOL). Previous research revealed spiritual support by religious communities led to more aggressive care at the EOL, particularly among minority patients. Understanding this phenomenon is important to help address disparities in EOL care. The study objective was to explore and describe clergy perspectives regarding "good" versus "poor" death within the participant's spiritual tradition. This was a qualitative, descriptive study. Community clergy from various spiritual backgrounds, geographical locations within the United States, and races/ethnicities were recruited. Participants included 35 clergy who participated in one-on-one interviews (N = 14) and two focus groups (N = 21). Semistructured interviews explored clergy viewpoints on factors related to a "good death." Principles of grounded theory were used to identify a final set of themes and subthemes. A good death was characterized by wholeness and certainty and emphasized being in relationship with God. Conversely, a "poor death" was characterized by separation, doubt, and isolation. Clergy identified four primary determinants of good versus poor death: dignity, preparedness, physical suffering, and community. Participants expressed appreciation for contextual factors that affect the death experience; some described a "middle death," or one that integrates both positive and negative elements. Location of death was not viewed as a significant contributing factor. Understanding clergy perspectives regarding quality of death can provide important insights to help improve EOL care, particularly for patients highly engaged with faith communities. These findings can inform initiatives to foster productive relationships between clergy, clinicians, and congregants and reduce health disparities.
Modeling the public health impact of malaria vaccines for developers and policymakers
2013-01-01
Background Efforts to develop malaria vaccines show promise. Mathematical model-based estimates of the potential demand, public health impact, and cost and financing requirements can be used to inform investment and adoption decisions by vaccine developers and policymakers on the use of malaria vaccines as complements to existing interventions. However, the complexity of such models may make their outputs inaccessible to non-modeling specialists. This paper describes a Malaria Vaccine Model (MVM) developed to address the specific needs of developers and policymakers, who need to access sophisticated modeling results and to test various scenarios in a user-friendly interface. The model’s functionality is demonstrated through a hypothetical vaccine. Methods The MVM has three modules: supply and demand forecast; public health impact; and implementation cost and financing requirements. These modules include pre-entered reference data and also allow for user-defined inputs. The model includes an integrated sensitivity analysis function. Model functionality was demonstrated by estimating the public health impact of a hypothetical pre-erythrocytic malaria vaccine with 85% efficacy against uncomplicated disease and a vaccine efficacy decay rate of four years, based on internationally-established targets. Demand for this hypothetical vaccine was estimated based on historical vaccine implementation rates for routine infant immunization in 40 African countries over a 10-year period. Assumed purchase price was $5 per dose and injection equipment and delivery costs were $0.40 per dose. Results The model projects the number of doses needed, uncomplicated and severe cases averted, deaths and disability-adjusted life years (DALYs) averted, and cost to avert each. In the demonstration scenario, based on a projected demand of 532 million doses, the MVM estimated that 150 million uncomplicated cases of malaria and 1.1 million deaths would be averted over 10 years. This is equivalent to 943 uncomplicated cases and 7 deaths averted per 1,000 vaccinees. In discounted 2011 US dollars, this represents $11 per uncomplicated case averted and $1,482 per death averted. If vaccine efficacy were reduced to 75%, the estimated uncomplicated cases and deaths averted over 10 years would decrease by 14% and 19%, respectively. Conclusions The MVM can provide valuable information to assist decision-making by vaccine developers and policymakers, information which will be refined and strengthened as field studies progress allowing further validation of modeling assumptions. PMID:23815273
Modeling the public health impact of malaria vaccines for developers and policymakers.
Nunes, Julia K; Cárdenas, Vicky; Loucq, Christian; Maire, Nicolas; Smith, Thomas; Shaffer, Craig; Måseide, Kårstein; Brooks, Alan
2013-07-01
Efforts to develop malaria vaccines show promise. Mathematical model-based estimates of the potential demand, public health impact, and cost and financing requirements can be used to inform investment and adoption decisions by vaccine developers and policymakers on the use of malaria vaccines as complements to existing interventions. However, the complexity of such models may make their outputs inaccessible to non-modeling specialists. This paper describes a Malaria Vaccine Model (MVM) developed to address the specific needs of developers and policymakers, who need to access sophisticated modeling results and to test various scenarios in a user-friendly interface. The model's functionality is demonstrated through a hypothetical vaccine. The MVM has three modules: supply and demand forecast; public health impact; and implementation cost and financing requirements. These modules include pre-entered reference data and also allow for user-defined inputs. The model includes an integrated sensitivity analysis function. Model functionality was demonstrated by estimating the public health impact of a hypothetical pre-erythrocytic malaria vaccine with 85% efficacy against uncomplicated disease and a vaccine efficacy decay rate of four years, based on internationally-established targets. Demand for this hypothetical vaccine was estimated based on historical vaccine implementation rates for routine infant immunization in 40 African countries over a 10-year period. Assumed purchase price was $5 per dose and injection equipment and delivery costs were $0.40 per dose. The model projects the number of doses needed, uncomplicated and severe cases averted, deaths and disability-adjusted life years (DALYs) averted, and cost to avert each. In the demonstration scenario, based on a projected demand of 532 million doses, the MVM estimated that 150 million uncomplicated cases of malaria and 1.1 million deaths would be averted over 10 years. This is equivalent to 943 uncomplicated cases and 7 deaths averted per 1,000 vaccinees. In discounted 2011 US dollars, this represents $11 per uncomplicated case averted and $1,482 per death averted. If vaccine efficacy were reduced to 75%, the estimated uncomplicated cases and deaths averted over 10 years would decrease by 14% and 19%, respectively. The MVM can provide valuable information to assist decision-making by vaccine developers and policymakers, information which will be refined and strengthened as field studies progress allowing further validation of modeling assumptions.
Modeling causes of death: an integrated approach using CODEm
2012-01-01
Background Data on causes of death by age and sex are a critical input into health decision-making. Priority setting in public health should be informed not only by the current magnitude of health problems but by trends in them. However, cause of death data are often not available or are subject to substantial problems of comparability. We propose five general principles for cause of death model development, validation, and reporting. Methods We detail a specific implementation of these principles that is embodied in an analytical tool - the Cause of Death Ensemble model (CODEm) - which explores a large variety of possible models to estimate trends in causes of death. Possible models are identified using a covariate selection algorithm that yields many plausible combinations of covariates, which are then run through four model classes. The model classes include mixed effects linear models and spatial-temporal Gaussian Process Regression models for cause fractions and death rates. All models for each cause of death are then assessed using out-of-sample predictive validity and combined into an ensemble with optimal out-of-sample predictive performance. Results Ensemble models for cause of death estimation outperform any single component model in tests of root mean square error, frequency of predicting correct temporal trends, and achieving 95% coverage of the prediction interval. We present detailed results for CODEm applied to maternal mortality and summary results for several other causes of death, including cardiovascular disease and several cancers. Conclusions CODEm produces better estimates of cause of death trends than previous methods and is less susceptible to bias in model specification. We demonstrate the utility of CODEm for the estimation of several major causes of death. PMID:22226226
Arevalo, Jimmy J; Rietjens, Judith A; Swart, Siebe J; Perez, Roberto S G M; van der Heide, Agnes
2013-05-01
Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of physicians. Nurses' experiences differ from that of physicians; they more often describe that continuous palliative sedation is used with the intention of hastening death and to have experienced serious emotional burden. Therefore, it is important to understand the experience of nurses in continuous palliative sedation. To describe nurses' experiences with the decision-making and performance of continuous palliative sedation in terminally ill patients. Cross-sectional study. In 2008, a structured questionnaire was sent to 576 nurses in six professional home care organizations, ten units for palliative care in nursing homes and in-patient hospices and seven hospitals in the western region of the Netherlands. Respondents provided information about the last patient receiving continuous palliative sedation whom they had cared for. Two-hundred seventy-seven questionnaires were returned and 199 (71.84%) reported a case of continuous palliative sedation. Nurses felt involved in the decision to use sedation in 84% of cases, albeit to a lesser extent in home care (68.75%, p=0.002). They agreed with the performance of continuous palliative sedation in 95.97% of cases and they proposed the use of continuous palliative sedation in 16.16%. Nurses were present at the start of sedation in 81.40% of cases and reported physicians to be present in 45.22%. In 72.77%, arrangements had been made among caregivers about the coordination of health care regarding the sedation. Nurses seem to play an important role in the use of continuous sedation. This role is mainly supportive toward physicians and patients during the decision-making process, but shifts to an active performance of sedation, particularly in settings where they explicitly participate as members of a team. Nurses could develop the practice of palliative sedation by anticipating procedural obstacles in the performance of continuous palliative sedation. We recommend them to become more active participants in the decision-making to improve the care of patients receiving continuous palliative sedation. Copyright © 2012 Elsevier Ltd. All rights reserved.
[End-of-life care and end-of-life medical decisions: the ITAELD study].
Miccinesi, Guido; Puliti, Donella; Paci, Eugenio
2011-01-01
To describe the attitudes towards end of life care and the practice of end-of-life medical decisions with possible life-shortening effect among Italian physicians. Cross sectional study (last death among the assisted patients in the last 12 months was considered). In the year 2007, 5,710 GPs and 8,950 hospital physicians were invited all over Italy to participate in the ITAELDstudy through anonymous mail questionnaire. Proportion of agreement with statements on end-of-life care issues. Proportion of deaths with an end-of-life medical decision. The response rate was 19.2%. The 65% of respondents agreed with the duty to respect any non-treatment request of the competent patient, the 55% agreed with the same duty in case of advanced directives, the 39% in case of proxy's request. The 53% of respondents agreed with the ethical acceptability of active euthanasia in selected cases. Among 1,850 deaths the 57.7% did not receive any end-of-life medical decision. For a further 21.0% no decision was possible, being sudden and unexpected deaths. In the remaining 21.3% at least one end-of-life medical decision was reported: 0.8% was classified as physician assisted death, 20.5% as non-treatment decision. Among all deceased the 19.6% were reported to have been deeply sedated. Being favourable to the use of opioids in terminal patients was associated to non-treatment decisions with possible but non-intentional life shortening effect; agreeing with the duty to fully respect any actual non-treatment request of the competent patient was associated to end-of life medical decisions with intentional life-shortening effect (adjusted OR>10 in both cases). The life stance and ethical beliefs of physicians determine their behaviour at the end of life wherever specific statements of law are lacking. Therefore education and debate are needed on these issues.
[Palliative sedation: Current situation and areas of improvement].
Nabal, Maria; Palomar, Concepción; Juvero, M Teresa; Taberner, M Teresa; León, Miguel; Salud, Antonieta
2014-01-01
To determine the prevalence, epidemiology and registration status of palliative sedation (PS) prevalence in a teaching hospital, and to establish areas for improvement. A descriptive retrospective analysis was designed using the records from cancer patients who died between October and December 2010. The variables included were: epidemiological, inpatient unit, refractory symptom, drugs and dosages, and patient participation in the decision making process. The qualitative analysis followed a Delphi process: each participant received the overall performance of the group referred to as mean, median, 25th and 75th percentile. Items selected were those in which there was total or a high consensus. A total of 53 deaths were identified. Just over half (51.92%) received PS. The mean age was 67.46 and 64% were males. The most frequent diagnosis was lung cancer (32.14%). Fifteen of the patient patients were in the Oncology ward, 7 in Hematology, and 4 at the Emergency Department. The PC team took part in 14 of the sedations performed. A refractory symptom was identified in 20. There were 11 cases of dyspnea and 5 cases of delirium. The mean time between admission and PS was 9.5 days. The mean duration of PS was 1.2 days, with a mean number of 2.6 drugs used. There were 20 informed consents which were all verbal. The mean time from last chemotherapy to death was 82 days. For the Delphi process, 12 oncology or palliative care health professionals were included. A consensus was reached on the minimum data to be recorded in case of PS. This list includes: selection criteria, decision-making process and the sedation evolution. PS was applied in half of the patients who died due to dyspnea or delirium. Selection criteria were identified, as well as the type of PS and patient involvement in decision making process. A consensus was also reached on a minimum dataset that would help the clinician to record relevant information in PS. Copyright © 2013 SECA. Published by Elsevier Espana. All rights reserved.
Eneanya, Nwamaka D; Goff, Sarah L; Martinez, Talaya; Gutierrez, Natalie; Klingensmith, Jamie; Griffith, John L; Garvey, Casey; Kitsen, Jenny; Germain, Michael J; Marr, Lisa; Berzoff, Joan; Unruh, Mark; Cohen, Lewis M
2015-06-12
End-stage renal disease carries a prognosis similar to cancer yet only 20 % of end-stage renal disease patients are referred to hospice. Furthermore, conversations between dialysis team members and patients about end-of-life planning are uncommon. Lack of provider training about how to communicate prognostic data may contribute to the limited number of end-of-life care discussions that take place with this chronically ill population. In this study, we will test the Shared Decision-Making Renal Supportive Care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided. This multi-center study will deploy an intervention to improve end-of-life communication for hemodialysis patients who are at high risk of death in the ensuing six months. The intervention will be carried out as a prospective cohort with a retrospective cohort serving as the comparison group. Patients will be recruited from 16 dialysis units associated with two large academic centers in Springfield, Massachusetts and Albuquerque, New Mexico. Critical input from patient advisory boards, a stakeholder panel, and initial qualitative analysis of patient and caretaker experiences with advance care planning have informed the communication intervention. Rigorous communication training for hemodialysis social workers and providers will ensure that standardized study procedures are performed at each dialysis unit. Nephrologists and social workers will communicate prognosis and provide advance care planning in face-to-face encounters with patients and families using a social work-centered algorithm. Study outcomes including frequency and timing of hospice referrals, patient and caretaker satisfaction, quality of end-of-life discussions, and quality of death will be assessed over an 18 month period. The Shared Decision-Making Renal Supportive Care Communication intervention intends to improve discussions about prognosis and end-of-life care with end-stage renal disease patients. We anticipate that the intervention will help guide hemodialysis staff and providers to effectively participate in advance care planning for patients and caretakers to establish preferences and goals at the end of life. NCT02405312.
Conflict resolution with end of life decisions in critical care settings.
Murphy, C; Sweeney, M A
1995-01-01
This demonstration will present the key modules from an innovative videodisc-based program that was designed as an educational tool for health care professionals. It provides a resource for learning to deal with patients and families regarding the increasing problematic area of end-of-life-decisions. Tough Choices: Ethics, the Elderly, and Life-Sustaining Technologies is an interactive program that combines abstract ethical approaches with the realistic drama of a critical care setting. The format integrates scientific facts about the patient with value questions regarding the utilization of life-sustaining technologies. The unique program provides health care personnel with strategies on how to guide family decision-making as well as examples of the various interventions. This interactive multimedia program opens up an opportunity for health care providers to participate in a clinical case in which life and death decisions are made. Learners can explore various perspectives and treatment options within the framework of the dramatic case presentation without the usual time constraints or worries about causing harm to patients. The program involves learners in a variety of ethical and legal dilemmas that centers around a patient, her family, and a variety of health care professionals. Dramatic advances in the development of life-sustaining medical technologies have given hope to many people whose conditions would have meant certain death only a few years ago. As access to the technologies has expanded, concern for their appropriate utilization has become an issue worthy of increasing attention. Questions about the benefits of life-sustaining treatments are being raised in many quarters, particularly when the technology is viewed as a modern means of postponing death and prolonging suffering. Tough Choices brings to life the story of Irene Sullivan, an elderly widow who has an unexpected heart attack. Suddenly, her very existence depends on the life-support provided by mechanical ventilation and cardiopulmonary resuscitation (CPR). This is a growing area of concern since more than half of the patients who receive CPR and tube feedings and one third of the people receiving mechanical ventilation are 65 or over. Mrs. Sullivan's health care team is forced to deal with the opposing viewpoints of several close family members regarding the utilization of advanced medical technology. The interactive program invites viewers to explore the complex ethical and legal dilemmas involved in making life-and-death decisions about her care. It also permits immediate access to supportive resources in three areas: the clinical chart, abstracts of relevant research studies on life-sustaining technologies, and information from the professional literature on advance directives. The program incorporates practical steps involved in implementing the Patient Self-Determination Act as it follows the patient from the time of hospitalization through a series of life-threatening crises. Two very different aspects of the role of the health care professionals were explored: a crisis mode which covers the steps in managing a full-blown crisis situation, and a prevention mode which analyzes steps that could have been followed to keep an ethical crisis from occurring. The strong role models for practice display many of the characteristics that the helping professions need to foster in an atmosphere of healthcare reform.
Negative Freedom and Death in the United States
Subramanian, S. V.
2010-01-01
Personal freedoms have been characterized as “positive” (freedom to pursue opportunities) and “negative” (freedom from external constraints on decision making). An ecological analysis of US data revealed a strong positive association (r = 0.41; P = .003) between state-level negative personal freedom (defined in terms of regulation of personal behavior) and state-level age-adjusted rates of unintentional injury. A conceptual emphasis on positive freedom construed as freedom to pursue a life without risk of unintentional injury could help motivate a conversation to improve public health. PMID:20167883
The PoET (Prevention of Error-Based Transfers) Project.
Oliver, Jill; Chidwick, Paula
2017-01-01
The PoET (Prevention of Error-based Transfers) Project is one of the Ethics Quality Improvement Projects (EQIPs) taking place at William Osler Health System. This specific project is designed to reduce transfers from long-term care to hospital that are caused by legal and ethical errors related to consent, capacity and substitute decision-making. The project is currently operating in eight long-term care homes in the Central West Local Health Integration Network and has seen a 56% reduction in multiple transfers before death in hospital.
Verheijde, Joseph L; Rady, Mohamed Y; McGregor, Joan
2007-01-01
Organ donation after cardiac or circulatory death (DCD) has been introduced to increase the supply of transplantable organs. In this paper, we argue that the recovery of viable organs useful for transplantation in DCD is not compatible with the dead donor rule and we explain the consequential ethical and legal ramifications. We also outline serious deficiencies in the current consent process for DCD with respect to disclosure of necessary elements for voluntary informed decision making and respect for the donor's autonomy. We compare two alternative proposals for increasing organ donation consent in society: presumed consent and mandated choice. We conclude that proceeding with the recovery of transplantable organs from decedents requires a paradigm change in the ethics of organ donation. The paradigm change to ensure the legitimacy of DCD practice must include: (1) societal agreement on abandonment of the dead donor rule, (2) legislative revisions reflecting abandonment of the dead donor rule, and (3) requirement of mandated choice to facilitate individual participation in organ donation and to ensure that decisions to participate are made in compliance with the societal values of respect for autonomy and self-determination. PMID:17519030
Is expected utility theory normative for medical decision making?
Cohen, B J
1996-01-01
Expected utility theory is felt by its proponents to be a normative theory of decision making under uncertainty. The theory starts with some simple axioms that are held to be rules that any rational person would follow. It can be shown that if one adheres to these axioms, a numerical quantity, generally referred to as utility, can be assigned to each possible outcome, with the preferred course of action being that which has the highest expected utility. One of these axioms, the independence principle, is controversial, and is frequently violated in experimental situations. Proponents of the theory hold that these violations are irrational. The independence principle is simply an axiom dictating consistency among preferences, in that it dictates that a rational agent should hold a specified preference given another stated preference. When applied to preferences between lotteries, the independence principle can be demonstrated to be a rule that is followed only when preferences are formed in a particular way. The logic of expected utility theory is that this demonstration proves that preferences should be formed in this way. An alternative interpretation is that this demonstrates that the independence principle is not a valid general rule of consistency, but in particular, is a rule that must be followed if one is to consistently apply the decision rule "choose the lottery that has the highest expected utility." This decision rule must be justified on its own terms as a valid rule of rationality by demonstration that violation would lead to decisions that conflict with the decision maker's goals. This rule does not appear to be suitable for medical decisions because often these are one-time decisions in which expectation, a long-run property of a random variable, would not seem to be applicable. This is particularly true for those decisions involving a non-trivial risk of death.
Lung cancer risk from radon in Ontario, Canada: how many lung cancers can we prevent?
Peterson, Emily; Aker, Amira; Kim, JinHee; Li, Ye; Brand, Kevin; Copes, Ray
2013-11-01
To calculate the burden of lung cancer illness due to radon for all thirty-six health units in Ontario and determine the number of radon-attributable lung cancer deaths that could be prevented. We calculated the population attributable risk percent, excess life-time risk ratio, life-years lost, the number of lung cancer deaths due to radon, and the number of deaths that could be prevented if all homes above various cut-points were effectively reduced to background levels. It is estimated that 13.6 % (95 % CI 11.0, 16.7) of lung cancer deaths in Ontario are attributable to radon, corresponding to 847 (95 % CI 686, 1,039) lung cancer deaths each year, approximately 84 % of these in ever-smokers. If all homes above 200 Bq/m(3), the current Canadian guideline, were remediated to background levels, it is estimated that 91 lung cancer deaths could be prevented each year, 233 if remediation was performed at 100 Bq/m(3). There was important variation across health units. Radon is an important contributor to lung cancer deaths in Ontario. A large portion of radon-attributable lung cancer deaths are from exposures below the current Canadian guideline, suggesting interventions that install effective radon-preventive measures into buildings at build may be a good alternative population prevention strategy to testing and remediation. For some health units, testing and remediation may also prevent a portion of radon-related lung cancer deaths. Regional attributable risk estimates can help with local public health resource allocation and decision making.
Murillo-Zamora, Efrén; García-Ceballos, Raúl; Delgado-Enciso, Iván; Garza-Guajardo, Raquel; Barboza-Quintana, Oralia; Rodríguez-Sánchez, Irám P; Mendoza-Cano, Oliver
2016-01-01
Excess body weight has become a major public health problem worldwide, and the burden of overweight and obesity was calculated in this work from a health economics perspective. To estimate the burden of disease attributable to overweight and obesity among males and females aged 20 years and older using years of life lost (YLL) and age-standardized YLL rates (ASYLL), and to rank the leading causes of premature death. A cross-sectional study took place (2010-2014) and 6,054 deaths were analyzed. Thirteen basic causes of death associated with overweight or obesity were included. The population attributable fraction (PAF), YLL, and ASYLL were calculated. The overall burden attributable to overweight and obesity was 36,087 YLL, and the estimated ASYLL per 10,000 persons was 1,098 and 1,029 in males and females, respectively. Type 2 diabetes mellitus was the main cause of premature death (males, 968 ASYLL; females, 772 ASYLL). Overweight and obesity are major risk factors of chronic diseases that are main causes of premature death in the study population. Strategies for preventing overweight and obesity may decrease the incidence and mortality associated with these non-communicable diseases. ASYLL seems to be an indicator that is particularly well adapted to decision-making in public health.
[Elisabeth Kübler-Ross-Nurekr renewal center: health care based on the hospice model].
de Santana, M T; Nascimento, M F; de Almeida, C F
2000-01-01
The hospice model is a movement concerned with the care of the dying patient and its family. It's main aim is to comfort and give nursing assistance to terminal patients, giving the patient and family more decision making power than it would have in regular hospitals. The Hospice is not a geographic, territorial space, defined as what we call an "institution". It is more than that, it is an attitude, a behavior towards death and dying. This paper reports on the experience of a multi-professional team' which implemented hospice model care in the Nursing School of the Federal University of Bahia. The study showed that there is a need to understand and study tanathology, to change one's changing attitude towards death and dying, and to develop the ability to deal with one's own terminability.
[Analysis of the Debate on Neonatal Euthanasia Using Present Bioethical Literature].
Martín Hortigüela, María Elena
2015-01-01
Nowadays, most of the deaths in neonatal ages take place in neonatal intensive care units and a significative number of these are involved in decisions of withholding or withdrawing medical care. The growing complexity of the health care in neonatal settings entails that end-of-life decision-making occurs more frequently. Personal views and attitudes on the best care of the severely ill newborns can be different, since to define objectively the ″best interests″ for the infant is not easy at all. The question of how to best care for such infants is ongoing, and there remain deep divisions within the field. The aim of this issue is to review the different criteria used in the western world, Europe, especially in the Netherlands, and the EEUU and the current debate on neonatal euthanasia. Poor vital prognosis, current and future quality of life and, after the Groningen protocol, unbearable suffering are the criteria commonly used in neonatal end-of-life decisions, including euthanasia. It is necessary to distinguish the decisions, in which euthanasia is chosen, of which they are an appropriate limit of therapeutic effort.
Identifying Factors Associated with Maternal Deaths in Jharkhand, India: A Verbal Autopsy Study
Pradhan, Manas Ranjan
2013-01-01
Maternal mortality has been identified as a priority issue in health policy and research in India. The country, with an annual decrease of maternal mortality rate by 4.9% since 1990, now records 63,000 maternal deaths a year. India tops the list of countries with high maternal mortality. Based on a verbal autopsy study of 403 maternal deaths, conducted in 2008, this paper explores the missed opportunities to save maternal lives, besides probing into the socioeconomic factors contributing to maternal deaths in Jharkhand, India. This cross-sectional study was carried out in two phases, and a multistage sampling design was used in selecting deaths for verbal autopsy. Informed consent was taken into consideration before verbal autopsy. The analytical approach includes bivariate analysis using SPSS 15, besides triangulation of qualitative and quantitative findings. Most of the deceased were poor (89%), non-literates (85%), and housewives (74%). Again, 80% died in the community/at home, 28% died during pregnancy while another 26% died during delivery. Any antenatal care was received by merely 28% women, and only 20% of the deliveries were conducted by skilled birth attendants (doctors and midwives). Delays in decision-making, travel, and treatment compounded by ignorance of obstetric complications, inadequate use of maternal healthcare services, poor healthcare infrastructure, and harmful rituals are the major contributing factors of maternal deaths in India. PMID:23930345
Identifying factors associated with maternal deaths in Jharkhand, India: a verbal autopsy study.
Khan, Nizamuddin; Pradhan, Manas Ranjan
2013-06-01
Maternal mortality has been identified as a priority issue in health policy and research in India. The country, with an annual decrease of maternal mortality rate by 4.9% since 1990, now records 63,000 maternal deaths a year. India tops the list of countries with high maternal mortality. Based on a verbal autopsy study of 403 maternal deaths, conducted in 2008, this paper explores the missed opportunities to save maternal lives, besides probing into the socioeconomic factors contributing to maternal deaths in Jharkhand, India. This cross-sectional study was carried out in two phases, and a multistage sampling design was used in selecting deaths for verbal autopsy. Informed consent was taken into consideration before verbal autopsy. The analytical approach includes bivariate analysis using SPSS 15, besides triangulation of qualitative and quantitative findings. Most of the deceased were poor (89%), non-literates (85%), and housewives (74%). Again, 80% died in the community/at home, 28% died during pregnancy while another 26% died during delivery. Any antenatal care was received by merely 28% women, and only 20% of the deliveries were conducted by skilled birth attendants (doctors and midwives). Delays in decision-making, travel, and treatment compounded by ignorance of obstetric complications, inadequate use of maternal healthcare services, poor healthcare infrastructure, and harmful rituals are the major contributing factors of maternal deaths in India.
Thorpe, Sara; VanderEnde, Kristin; Peters, Courtney; Bardin, Lauren; Yount, Kathryn M
2016-01-01
An estimated 1.5 million children under five die annually from vaccine preventable diseases, and 17% of these deaths can be averted with vaccination. Predictors of immunization coverage, such as maternal schooling, are well documented; yet, preventable under-five mortality persists. To understand these patterns, researchers are exploring the mother-child relationship through an empowerment framework. This systematic review assesses evidence of the relationship between women's agency as a component of empowerment and vaccine completion among children <5 years in lower-income countries. We searched in Socindex, Pubmed, Web of Science and Women's Studies International for peer-reviewed articles focused on two measures of women's agency-decision-making and freedom of movement-and child vaccination. Our initial search identified 406 articles and abstracts for screening; 12 studies met the inclusion and exclusion criteria. A majority (83%) of studies revealed at least one positive association of measures for women's agency with immunization coverage. These relationships varied by geographic location, and most studies focused on women's decision making rather than freedom of movement. No included study came from Latin America or the Middle East. Overall, women's agency, typically measured by decision-making, was positively associated with the odds of complete childhood immunizations. Yet, the concept of agency was inconsistently defined and operationalized. Future research should address these inconsistencies and focus on under-represented geographic regions including Latin America and the Middle East.
Hennelly, Marie Oliva; Sly, Jamilia R; Villagra, Cristina; Jandorf, Lina
2015-06-01
Colorectal cancer (CRC) is a preventable yet leading cause of cancer mortality among Latinos in the USA. Cultural targeting and narrative messaging are two strategies to increase the low screening colonoscopy rates among Latinos. This study identifies key messages for educational interventions aiming to increase screening colonoscopy used among Latinos and proposes a model to understand the relationship between factors involved in colonoscopy decision-making. Individual in-depth interviews were conducted with 12 Latino participants primarily of Puerto Rican descent on the topics of CRC knowledge, barriers and facilitators to colonoscopy use, and the use of narrative in colorectal health messaging. Knowledge about colorectal anatomy and the anesthesia component of colonoscopy procedure is low. Fear of procedure-related pain and fear of treatment-related burden following a cancer diagnosis are significant barriers to colonoscopy. Fear of disease-related suffering and death following a cancer diagnosis and fear of regret are strong facilitators and can be augmented by cancer narratives. Storytelling is commonly used in Latino culture and is an acceptable method to educate the Latino community about CRC screening via colonoscopy. Machismo is a unique barrier to colonoscopy for Latino men via homophobia and reluctance to seek healthcare. A preliminary model to understand factors in colonoscopy decision-making among Latinos is presented. Counseling practices and educational interventions that use culturally targeted narrative health messaging to mediate fears and increase colonoscopy knowledge may increase screening colonoscopy use among Latinos.
Yousefi, M; Ferreira, R P M
2017-03-30
This study presents an agent-based simulation modeling in an emergency department. In a traditional approach, a supervisor (or a manager) allocates the resources (receptionist, nurses, doctors, etc.) to different sections based on personal experience or by using decision-support tools. In this study, each staff agent took part in the process of allocating resources based on their observation in their respective sections, which gave the system the advantage of utilizing all the available human resources during the workday by being allocated to a different section. In this simulation, unlike previous studies, all staff agents took part in the decision-making process to re-allocate the resources in the emergency department. The simulation modeled the behavior of patients, receptionists, triage nurses, emergency room nurses and doctors. Patients were able to decide whether to stay in the system or leave the department at any stage of treatment. In order to evaluate the performance of this approach, 6 different scenarios were introduced. In each scenario, various key performance indicators were investigated before and after applying the group decision-making. The outputs of each simulation were number of deaths, number of patients who leave the emergency department without being attended, length of stay, waiting time and total number of discharged patients from the emergency department. Applying the self-organizing approach in the simulation showed an average of 12.7 and 14.4% decrease in total waiting time and number of patients who left without being seen, respectively. The results showed an average increase of 11.5% in total number of discharged patients from emergency department.
Yousefi, M.; Ferreira, R.P.M.
2017-01-01
This study presents an agent-based simulation modeling in an emergency department. In a traditional approach, a supervisor (or a manager) allocates the resources (receptionist, nurses, doctors, etc.) to different sections based on personal experience or by using decision-support tools. In this study, each staff agent took part in the process of allocating resources based on their observation in their respective sections, which gave the system the advantage of utilizing all the available human resources during the workday by being allocated to a different section. In this simulation, unlike previous studies, all staff agents took part in the decision-making process to re-allocate the resources in the emergency department. The simulation modeled the behavior of patients, receptionists, triage nurses, emergency room nurses and doctors. Patients were able to decide whether to stay in the system or leave the department at any stage of treatment. In order to evaluate the performance of this approach, 6 different scenarios were introduced. In each scenario, various key performance indicators were investigated before and after applying the group decision-making. The outputs of each simulation were number of deaths, number of patients who leave the emergency department without being attended, length of stay, waiting time and total number of discharged patients from the emergency department. Applying the self-organizing approach in the simulation showed an average of 12.7 and 14.4% decrease in total waiting time and number of patients who left without being seen, respectively. The results showed an average increase of 11.5% in total number of discharged patients from emergency department. PMID:28380196
Parental Acceptance of HPV Vaccine in Peru: A Decision Framework
Bartolini, Rosario M.; Winkler, Jennifer L.; Penny, Mary E.; LaMontagne, D. Scott
2012-01-01
Objective and Method Cervical cancer is the third most common cancer affecting women worldwide and it is an important cause of death, especially in developing countries. Cervical cancer is caused by human papillomavirus (HPV) and can be prevented by HPV vaccine. The challenge is to expand vaccine availability to countries where it is most needed. In 2008 Peru’s Ministry of Health implemented a demonstration project involving 5th grade girls in primary schools in the Piura region. We designed and conducted a qualitative study of the decision-making process among parents of girls, and developed a conceptual model describing the process of HPV vaccine acceptance. Results We found a nonlinear HPV decision-making process that evolved over time. Initially, the vaccine’s newness, the requirement of written consent, and provision of information were important. If information was sufficient and provided by credible sources, many parents accepted the vaccine. Later, after obtaining additional information from teachers, health personnel, and other trusted sources, more parents accepted vaccination. An understanding of the issues surrounding the vaccine developed, parents overcome fears and rumors, and engaged in family negotiations–including hearing the girl’s voice in the decision-making process. The concept of prevention (cancer as danger, future health, and trust in vaccines) combined with pragmatic factors (no cost, available at school) and the credibility of the offer (information in the media, recommendation of respected authority figure) were central to motivations that led parents to decide to vaccinate their daughters. A lack of confidence in the health system was the primary inhibitor of vaccine acceptance. Conclusions Health personnel and teachers are credible sources of information and can provide important support to HPV vaccination campaigns. PMID:23144719
Rosenfeld, Dana; Ridge, Damien; Catalan, Jose; Delpech, Valerie
2016-08-01
Studies of disclosure amongst older people living with HIV (PLWH) are uninformed by critical social-gerontological approaches that can help us to appreciate how older PLWH see and treat age as relevant to disclosure of their HIV status. These approaches include an ethnomethodologically-informed social constructionism that explores how 'the' life course (a cultural framework depicting individuals' movement through predictable developmental stages from birth to death) is used as an interpretive resource for determining self and others' characteristics, capacities, and social circumstances: a process Rosenfeld and Gallagher (2002) termed 'lifecoursing'. Applying this approach to our analysis of 74 life-history interviews and three focus groups with older (aged 50+) people living with HIV in the United Kingdom, we uncover the central role that lifecoursing plays in participants' decision-making surrounding disclosure of their HIV to their children and/or older parents. Analysis of participants' accounts uncovered four criteria for disclosure: the relevance of their HIV to the other, the other's knowledge about HIV, the likelihood of the disclosure causing the other emotional distress, and the other's ability to keep the disclosed confidential. To determine if these criteria were met in relation to specific children and/or elders, participants engaged in lifecoursing, evaluating the other's knowledge of HIV, and capacity to appropriately manage the disclosure, by reference to their age. The use of assumptions about age and life-course location in decision-making regarding disclosure of HIV reflects a more nuanced engagement with age in the disclosure decision-making process than has been captured by previous research into HIV disclosure, including on the part of people aging with HIV. Copyright © 2016 Elsevier Inc. All rights reserved.
Xafis, Vicki; Wilkinson, Dominic; Sullivan, Jane
2015-04-30
The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.
Verbakel, Jan Y; Lemiengre, Marieke B; De Burghgraeve, Tine; De Sutter, An; Aertgeerts, Bert; Bullens, Dominique M A; Shinkins, Bethany; Van den Bruel, Ann; Buntinx, Frank
2015-08-07
Acute infection is the most common presentation of children in primary care with only few having a serious infection (eg, sepsis, meningitis, pneumonia). To avoid complications or death, early recognition and adequate referral are essential. Clinical prediction rules have the potential to improve diagnostic decision-making for rare but serious conditions. In this study, we aimed to validate a recently developed decision tree in a new but similar population. Diagnostic accuracy study validating a clinical prediction rule. Acutely ill children presenting to ambulatory care in Flanders, Belgium, consisting of general practice and paediatric assessment in outpatient clinics or the emergency department. Physicians were asked to score the decision tree in every child. The outcome of interest was hospital admission for at least 24 h with a serious infection within 5 days after initial presentation. We report the diagnostic accuracy of the decision tree in sensitivity, specificity, likelihood ratios and predictive values. In total, 8962 acute illness episodes were included, of which 283 lead to admission to hospital with a serious infection. Sensitivity of the decision tree was 100% (95% CI 71.5% to 100%) at a specificity of 83.6% (95% CI 82.3% to 84.9%) in the general practitioner setting with 17% of children testing positive. In the paediatric outpatient and emergency department setting, sensitivities were below 92%, with specificities below 44.8%. In an independent validation cohort, this clinical prediction rule has shown to be extremely sensitive to identify children at risk of hospital admission for a serious infection in general practice, making it suitable for ruling out. NCT02024282. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Hemmerich, Joshua A; Elstein, Arthur S; Schwarze, Margaret L; Moliski, Elizabeth G; Dale, William
2013-01-01
The present study tested predictions derived from the Risk as Feelings hypothesis about the effects of prior patients' negative treatment outcomes on physicians' subsequent treatment decisions. Two experiments at The University of Chicago, U.S.A., utilized a computer simulation of an abdominal aortic aneurysm (AAA) patient with enhanced realism to present participants with one of three experimental conditions: AAA rupture causing a watchful waiting death (WWD), perioperative death (PD), or a successful operation (SO), as well as the statistical treatment guidelines for AAA. Experiment 1 tested effects of these simulated outcomes on (n=76) laboratory participants' (university student sample) self-reported emotions, and their ratings of valence and arousal of the AAA rupture simulation and other emotion inducing picture stimuli. Experiment 2 tested two hypotheses: 1) that experiencing a patient WWD in the practice trial's experimental condition would lead physicians to choose surgery earlier, and 2) experiencing a patient PD would lead physicians to choose surgery later with the next patient. Experiment 2 presented (n=132) physicians (surgeons and geriatricians) with the same experimental manipulation and a second simulated AAA patient. Physicians then chose to either go to surgery or continue watchful waiting. The results of Experiment 1 demonstrated that the WWD experimental condition significantly increased anxiety, and was rated similarly to other negative and arousing pictures. The results of Experiment 2 demonstrated that, after controlling for demographics, baseline anxiety, intolerance for uncertainty, risk attitudes, and the influence of simulation characteristics, the WWD experimental condition significantly expedited decisions to choose surgery for the next patient. The results support the Risk as Feelings hypothesis on physicians' treatment decisions in a realistic AAA patient computer simulation. Bad outcomes affected emotions and decisions, even with statistical AAA rupture risk guidance present. These results suggest that bad patient outcomes cause physicians to experience anxiety and regret that influences their subsequent treatment decision-making for the next patient. PMID:22571890
Hemmerich, Joshua A; Elstein, Arthur S; Schwarze, Margaret L; Moliski, Elizabeth Ghini; Dale, William
2012-07-01
The present study tested predictions derived from the Risk as Feelings hypothesis about the effects of prior patients' negative treatment outcomes on physicians' subsequent treatment decisions. Two experiments at The University of Chicago, U.S.A., utilized a computer simulation of an abdominal aortic aneurysm (AAA) patient with enhanced realism to present participants with one of three experimental conditions: AAA rupture causing a watchful waiting death (WWD), perioperative death (PD), or a successful operation (SO), as well as the statistical treatment guidelines for AAA. Experiment 1 tested effects of these simulated outcomes on (n = 76) laboratory participants' (university student sample) self-reported emotions, and their ratings of valence and arousal of the AAA rupture simulation and other emotion-inducing picture stimuli. Experiment 2 tested two hypotheses: 1) that experiencing a patient WWD in the practice trial's experimental condition would lead physicians to choose surgery earlier, and 2) experiencing a patient PD would lead physicians to choose surgery later with the next patient. Experiment 2 presented (n = 132) physicians (surgeons and geriatricians) with the same experimental manipulation and a second simulated AAA patient. Physicians then chose to either go to surgery or continue watchful waiting. The results of Experiment 1 demonstrated that the WWD experimental condition significantly increased anxiety, and was rated similarly to other negative and arousing pictures. The results of Experiment 2 demonstrated that, after controlling for demographics, baseline anxiety, intolerance for uncertainty, risk attitudes, and the influence of simulation characteristics, the WWD experimental condition significantly expedited decisions to choose surgery for the next patient. The results support the Risk as Feelings hypothesis on physicians' treatment decisions in a realistic AAA patient computer simulation. Bad outcomes affected emotions and decisions, even with statistical AAA rupture risk guidance present. These results suggest that bad patient outcomes cause physicians to experience anxiety and regret that influences their subsequent treatment decision-making for the next patient. Copyright © 2012 Elsevier Ltd. All rights reserved.
Value of innovation for hematologic malignancies.
Monia, Marchetti
2016-01-01
Several novel drugs are dramatically improving both lifespan and quality-of-life of patients with blood cancers. Prolonged disease duration and increased treatment costs for hematologic malignancies impose a relevant economic burden onto healthcare services, despite the low incidence of blood cancers. Therefore, an appropriate paradigm for valuing 'innovation' is urgently required in order to refine pricing and reimbursement decisions. Cost-per-QALY-gained is still the standard metric for assessing the 'incremental' value of new drugs; however, the high number of 'comparator' therapies and the huge variety of treatment sequences make plain two-treatment comparisons sub-optimal, while multiple-treatment and multiple-sequence comparisons require complex and less-transparent decision models. A repository of standard backbones for decision models might allow benchmarking and comparability among cost-effectiveness analyses; however, an international effort is required to build it up. Deontology recommends that hematologists act in optimizing healthcare resources while preserving patient-physician alliance, but clinical practice guidelines do not support doctors in balancing cost against clinical outcomes. Decision models of chronic blood cancers unexpectedly proved that cost might be an appropriate value for innovation if treatments avoided severe toxicity and further lines of treatments, despite the eventually long duration of treatment and the competing risk of death due to comorbidity and old age. The improved transparency of decision models allows sharing of relevant structural and analytic parameters (i.e., time horizon, comparator treatments, hierarchy of end-point, assumptions, source of data, sub-group analyses) by stakeholders, physicians and patients, making health economics a noble 'translator' of values for innovation.
Gopčević, A; Rode, B; Vučić, M; Horvat, A; Širanović, M; Gavranović, Ž; Košec, V; Košec, A
2017-11-01
Maternal brain death during pregnancy remains an exceedingly complex situation that requires not only a well-considered medical management plan, but also careful decision-making in a legally and ethically delicate situation. Management of brain dead pregnant patients needs to adhere to special strategies that support the mother in a way that she can deliver a viable and healthy child. Brain death in pregnant women is very rare, with only a few published cases. We present a case of a pregnant woman with previously diagnosed multiple brain cavernomas that led to intracranial hemorrhage and brain stem death during the 21st week of pregnancy. The condition that can be proven unequivocally, using tests that do not endanger viability of the fetus, is brain stem death, diagnosed through absence of cranial reflexes. The patient was successfully treated until delivery of a healthy female child at 29weeks of gestation. The patient received continuous hormone substitution therapy, fetal monitoring and extrinsic regulation of maternal homeostasis over 64days. After delivery, the final diagnosis of brain death was established through multi-slice computerized tomography pan-angiography. This challenging case discusses ethical and medical circumstances arising from a diagnosis of maternal brain death, while showing that prolongation of somatic life support in a multidisciplinary setting can result in a successful pregnancy outcome. Copyright © 2017 Elsevier Ltd. All rights reserved.
The Australian and New Zealand Audit of Surgical Mortality-birth, deaths, and carriage.
Raju, R S; Guy, G S; Majid, A J; Babidge, W; Maddern, G J
2015-02-01
This article outlines the formation of the Australian and New Zealand Audit of Surgical Mortality (ANZASM) and describes its objectives, governance, functioning and challenges. A nationwide audit of surgical mortality provides an overview of the leading causes of death in patients who require surgical care. It identifies system or process errors, trends in deficiency of care and helps develop strategies to reduce deaths in the surgical arena. A standardized tool is used to systematically collect data after every surgical death. Patient details are reviewed by a peer surgeon (and in certain cases a second) to identify issues with patient management and hospital processes. The treating surgeon is then offered confidential feedback and alternate views on patient management. From January 2009 to December 2012, 19,096 deaths were reported to the ANZASM. Eighty-six percent of the audited deaths occurred in patients requiring an emergency admission. Significant criticism of patient care was reported in 13% of cases with 16% of clinical issues perceived to be preventable. Western Australia, which first began the audit process, has shown a 30% reduction in surgical deaths. Nationwide mortality audits are a useful and worthwhile exercise. Recommendations identified in the audit reports direct educational workshops and seminars to address these issues. They allow Departments of Health to make informed decisions in their hospitals. Through this model, and the lessons learnt, we would encourage other countries planning to set up their own audits to follow a similar concept.
Cook, D A
2006-04-01
Models that estimate the probability of death of intensive care unit patients can be used to stratify patients according to the severity of their condition and to control for casemix and severity of illness. These models have been used for risk adjustment in quality monitoring, administration, management and research and as an aid to clinical decision making. Models such as the Mortality Prediction Model family, SAPS II, APACHE II, APACHE III and the organ system failure models provide estimates of the probability of in-hospital death of ICU patients. This review examines methods to assess the performance of these models. The key attributes of a model are discrimination (the accuracy of the ranking in order of probability of death) and calibration (the extent to which the model's prediction of probability of death reflects the true risk of death). These attributes should be assessed in existing models that predict the probability of patient mortality, and in any subsequent model that is developed for the purposes of estimating these probabilities. The literature contains a range of approaches for assessment which are reviewed and a survey of the methodologies used in studies of intensive care mortality models is presented. The systematic approach used by Standards for Reporting Diagnostic Accuracy provides a framework to incorporate these theoretical considerations of model assessment and recommendations are made for evaluation and presentation of the performance of models that estimate the probability of death of intensive care patients.
New paradigms in telemedicine: ambient intelligence, wearable, pervasive and personalized.
Rubel, Paul; Fayn, Jocelyne; Simon-Chautemps, Lucas; Atoui, Hussein; Ohlsson, Mattias; Telisson, David; Adami, Stefano; Arod, Sébastien; Forlini, Marie Claire; Malossi, Cesare; Placide, Joël; Ziliani, Gian Luca; Assanelli, Deodato; Chevalier, Philippe
2004-01-01
After decades of development of information systems dedicated to health professionals, there is an increasing demand for personalized and non-hospital based care. An especially critical domain is cardiology: almost two third of cardiac deaths occur out of hospital, and victims do not survive long enough to benefit from in-hospital treatments. We need to reduce the time before treatment. But symptoms are often interpreted wrongly. The only immediate diagnostic tool to assess the possibility of a cardiac event is the electrocardiogram (ECG). Event and transtelephonic ECG recorders are used to improve decision making but require setting up new infrastructures. The European EPI-MEDICS project has developed an intelligent Personal ECG Monitor (PEM) for the early detection of cardiac events. The PEM embeds advanced decision making techniques, generates different alarm levels and forwards alarm messages to the relevant care providers by means of new generation wireless communication. It is cost saving, involving care provider only if necessary and requiring no specific infrastructure. This solution is a typical example of pervasive computing and ambient intelligence that demonstrates how personalized, wearable, ubiquitous devices could improve healthcare.
Is ‘informed consent’ an ‘understood consent’ in hematopoietic cell transplantation?
D'Souza, A; Pasquini, M; Spellecy, R
2015-01-01
Hematopoietic cell transplantation (HCT) is a complex and highly specialized medical treatment that is associated with significant risks, including death. Furthermore, transplantation is offered to patients who often have no other curative treatment alternatives. The routine-consent process for HCT typically occurs before HCT and is influenced by many factors related to patients, physicians and the transplant per se. These factors can impede the consent process and subsequently result in a failure of proper engagement in and an understanding of the procedure with resultant adverse consequences influencing patients and even the patient–physician relationship. We contend that informed consent is a dynamic and ongoing process and that better patient education can assist in the decision making, fulfill the ethical principle of respect for autonomy and engage the patient to maximize compliance and adherence to therapy. This manuscript reviews the key literature pertaining to the decision-making and consent process in HCT and proposes guidelines for improving the consent process. Strategies for improving patient comprehension, engagement and enhancing consent forms are discussed. PMID:25243618
A case of the birth and death of a high reliability healthcare organisation.
Roberts, K H; Madsen, P; Desai, V; Van Stralen, D
2005-06-01
High reliability organisations (HROs) are those in which errors rarely occur. To accomplish this they conduct relatively error free operations over long periods of time and make consistently good decisions resulting in high quality and reliability. Some organisational processes that characterise HROs are process auditing, implementing appropriate reward systems, avoiding quality degradation, appropriately perceiving that risk exists and developing strategies to deal with it, and command and control. Command and control processes include migrating decision making, redundancy in people or hardware, developing situational awareness, formal rules and procedures, and training. These processes must be tailored to the specific organisation implementing them. These processes were applied to a paediatric intensive care unit (PICU) where care was derived from problem solving methodology rather than protocol. After a leadership change, the unit returned to the hierarchical medical model of care. Important outcome variables such as infant mortality, patient return to the PICU after discharge, days on the PICU, air transports, degraded. Implications for clinical practice include providing caregivers with sufficient flexibility to meet changing situations, encouraging teamwork, and avoiding shaming, naming, and blaming.
Rady, Mohamed Y; Verheijde, Joseph L.
2017-01-01
Mr Justice Baker delivered the Oxford Shrieval Lecture ‘A Matter of Life and Death’ on 11 October 2016. The lecture created public controversies about who can authorise withdrawal of assisted nutrition and hydration (ANH) in disorders of consciousness (DOC). The law requires court permission in ‘best interests’ decisions before ANH withdrawal only in permanent vegetative state and minimally conscious state. Some clinicians favour abandoning the need for court approval on the basis that clinicians are already empowered to withdraw ANH in other common conditions of DOC (e.g. coma, neurological disorders, etc.) based on their best interests assessment without court oversight. We set out a rationale in support of court oversight of best interests decisions in ANH withdrawal intended to end life in any person with DOC (who will lack relevant decision-making capacity). This ensures the safety of the general public and the protection of vulnerable disabled persons in society. PMID:28368210
An approach to and web-based tool for infectious disease outbreak intervention analysis
NASA Astrophysics Data System (ADS)
Daughton, Ashlynn R.; Generous, Nicholas; Priedhorsky, Reid; Deshpande, Alina
2017-04-01
Infectious diseases are a leading cause of death globally. Decisions surrounding how to control an infectious disease outbreak currently rely on a subjective process involving surveillance and expert opinion. However, there are many situations where neither may be available. Modeling can fill gaps in the decision making process by using available data to provide quantitative estimates of outbreak trajectories. Effective reduction of the spread of infectious diseases can be achieved through collaboration between the modeling community and public health policy community. However, such collaboration is rare, resulting in a lack of models that meet the needs of the public health community. Here we show a Susceptible-Infectious-Recovered (SIR) model modified to include control measures that allows parameter ranges, rather than parameter point estimates, and includes a web user interface for broad adoption. We apply the model to three diseases, measles, norovirus and influenza, to show the feasibility of its use and describe a research agenda to further promote interactions between decision makers and the modeling community.
Value and role of intensive care unit outcome prediction models in end-of-life decision making.
Barnato, Amber E; Angus, Derek C
2004-07-01
In the United States, intensive care unit (ICU) admission at the end of life is commonplace. What is the value and role of ICU mortality prediction models for informing the utility of ICU care?In this article, we review the history, statistical underpinnings,and current deployment of these models in clinical care. We conclude that the use of outcome prediction models to ration care that is unlikely to provide an expected benefit is hampered by imperfect performance, the lack of real-time availability, failure to consider functional outcomes beyond survival, and physician resistance to the use of probabilistic information when death is guaranteed by the decision it informs. Among these barriers, the most important technical deficiency is the lack of automated information systems to provide outcome predictions to decision makers, and the most important research and policy agenda is to understand and address our national ambivalence toward rationing care based on any criterion.
Nagaraj, Gayathri; Ma, Cynthia X
2013-03-01
Decisions regarding adjuvant chemotherapy for patients with estrogen receptor (ER)-positive, HER2-negative, lymph node-negative breast cancer have traditionally relied on clinical and pathologic parameters. However, the molecular heterogeneity and the complex tumor genome demand more sophisticated approaches to the problem. Several multigene-based assays have been developed to better prognosticate the risk of recurrence and death and predict benefit of therapy in this patient population. Oncologists are often faced with the challenge of incorporating these various complex genome-based biomarkers along with the traditional biomarkers in clinical decision-making. The NCCN Clinical Practice Guidelines in Oncology for Breast Cancer are helpful in providing a general recommendation. However, uncertainty remains in the absence of definitive data for various clinical scenarios. This case report describes a postmenopausal woman with stage I breast cancer that is low-grade and ER-rich, and has an intermediate Oncotype DX recurrence score of 28.
[Mortality from violent causes in the Americas].
Yunes, J
1993-04-01
With a view to assembling information to aid in decision-making with regard to prevention policies, a study of mortality from violent causes and its trends in the countries of the Americas was carried out. The study focused on persons under 24 years of age and utilized information from 1980 and 1986 taken from the data base of the Pan American Health Organization. The causes of death were grouped in accordance with the International Classification of Diseases, Ninth Revision. Accidental deaths were separated from intentional deaths by means of the following classification: traffic accidents, other accidents, homicides, suicides, and "unknown causes." The information on violent deaths was compared with information on deaths from infectious diseases during the same period. The results indicate that in 1986, 517,465 deaths from violent causes were recorded in the 28 countries of the Region. Violent deaths as a proportion of total deaths ranged from 3.7% in Jamaica to 26.8% in El Salvador. It was observed that between 1980 and 1986 traffic accidents and "other accidents" tended to diminish but there was a moderate increase in suicides. Homicide rates varied markedly between the countries. In the under-1 and 1-4 year age groups, the highest rates corresponded to "other accidents," except in Chile, where among children aged 1-4 the largest proportion of deaths were attributed to "unknown causes." Comparative analysis of deaths from violent causes and from infectious diseases in the population aged 0-24 years showed that the former increase whereas the latter decrease as age increases. The study pointed up the need to promote further research on these phenomena in order to develop appropriate prevention strategies.
Malhotra, Aneil; Banning, Adrian P; Jenkinson, Crispin
2010-01-01
Objectives To systematically assess the type of outcomes selected and the prevalence of patient reported outcomes in contemporary cardiovascular trials and to quantify any misuse or underuse of patient reported outcomes using a specially developed tool that would allow estimation of the relevance of such outcomes to clinical decision making. Design Systematic review. Data sources Medline and Embase. Study selection Randomised controlled trials of the treatment for or prevention of cardiovascular disease published in 10 leading general medical and cardiology journals from January 2005 to December 2008. Results Primary outcomes were patient important (death, morbidity, or patient reported outcomes) in only 93 of 413 trials (23%, SE 2%), whereas another 92 (22%, SE 2%) combined these outcomes with other less important ones into a composite. Sixty five trials (16%; SE 2%) used at least one instrument to measure patient reported outcomes, mostly in trials where such information would have been important or crucial for clinical decision making (52 trials). Patient reported outcomes were judged to be of little incremental value to a large number of, mostly explanatory, cardiovascular trials (152 trials). However, many trials in which patient reported outcomes would have been important or crucial for clinical decision making did not report such outcomes (122 of 174 trials, 70%). These included several trials that primarily aimed to improve symptoms or functional status, trials that tested interventions with a considerable potential for causing harm (mainly bleeding) that were not meaningfully measured, and trials with composite outcomes that were dominated by outcomes of questionable importance to patients. Conclusions Despite a continued rise in the reporting of patient reported outcomes with no evidence for their misuse in more recent cardiovascular trials, they seem to be still underused once their relevance to clinical decision making has been taken into account. This was largely explained by inappropriate use of composite outcomes and inadequate measurement of harms. PMID:21041324
Improving decision making in crisis.
Higgins, Guy; Freedman, Jennifer
2013-01-01
The most critical activity during emergencies or crises is making decisions about what to do next. This paper provides insights into the challenges that people face in making decisions at any time, but particularly during emergencies and crises. It also introduces the reader to the concept of different sense-making/decision-making domains, the human behaviours that can adversely affect decision making - decision derailers - and ways in which emergency responders can leverage this knowledge to make better decisions. While the literature on decision making is extensive, this paper is focused on those aspects that apply particularly to decision making in emergencies or times of crisis.
Telling stories about abortion: abortion-related plots in American film and television, 1916-2013.
Sisson, Gretchen; Kimport, Katrina
2014-05-01
Popular discourse on abortion in film and television assumes that abortions are under- and misrepresented. Research indicates that such representations influence public perception of abortion care and may play a role in the production of social myths around abortion, with consequences for women's experience of abortion. To date, abortion plotlines in American film and television have not been systematically tracked and analyzed. A comprehensive online search was conducted to identify all representations of pregnancy decision making and abortion in American film and television through January 2013. Search results were coded for year, pregnancy decision and mortality outcome. A total of 310 plotlines were identified, with an overall upward trend over time in the number of representations of abortion decision making. Of these plotlines, 173 (55.8%) resulted in abortion, 80 (25.8%) in parenting, 13 (4.2%) in adoption and 21 (6.7%) in pregnancy loss, and 16 (5.1%) were unresolved. A total of 13.5% (n=42) of stories ended with the death of the woman who considered an abortion, whether or not she obtained one. Abortion-related plotlines occur more frequently than popular discourse assumes. Year-to-year variation in frequency suggests an interactive relationship between media representations, cultural attitudes and policies around abortion regulation, consistent with cultural theory of the relationship between media products and social beliefs. Patterns of outcomes and rates of mortality are not representative of real experience and may contribute to social myths around abortion. The narrative linking of pregnancy termination with mortality is of particular note, supporting the social myth associating abortion with death. This analysis empirically describes the number of abortion-related plotlines in American film and television. It contributes to the systematic evaluation of the portrayal of abortion in popular culture and provides abortion care professionals and advocates with an initial accurate window into cultural stories being told about abortion. Copyright © 2014 Elsevier Inc. All rights reserved.
Decision-making in nursing practice: An integrative literature review.
Nibbelink, Christine W; Brewer, Barbara B
2018-03-01
To identify and summarise factors and processes related to registered nurses' patient care decision-making in medical-surgical environments. A secondary goal of this literature review was to determine whether medical-surgical decision-making literature included factors that appeared to be similar to concepts and factors in naturalistic decision making (NDM). Decision-making in acute care nursing requires an evaluation of many complex factors. While decision-making research in acute care nursing is prevalent, errors in decision-making continue to lead to poor patient outcomes. Naturalistic decision making may provide a framework for further exploring decision-making in acute care nursing practice. A better understanding of the literature is needed to guide future research to more effectively support acute care nurse decision-making. PubMed and CINAHL databases were searched, and research meeting criteria was included. Data were identified from all included articles, and themes were developed based on these data. Key findings in this review include nursing experience and associated factors; organisation and unit culture influences on decision-making; education; understanding patient status; situation awareness; and autonomy. Acute care nurses employ a variety of decision-making factors and processes and informally identify experienced nurses to be important resources for decision-making. Incorporation of evidence into acute care nursing practice continues to be a struggle for acute care nurses. This review indicates that naturalistic decision making may be applicable to decision-making nursing research. Experienced nurses bring a broad range of previous patient encounters to their practice influencing their intuitive, unconscious processes which facilitates decision-making. Using naturalistic decision making as a conceptual framework to guide research may help with understanding how to better support less experienced nurses' decision-making for enhanced patient outcomes. © 2017 John Wiley & Sons Ltd.
Family and community concerns about post-mortem needle biopsies in a Muslim society
2011-01-01
Background Post-mortem needle biopsies have been used in resource-poor settings to determine cause of death and there is interest in using them in Bangladesh. However, we did not know how families and communities would perceive this procedure or how they would decide whether or not to consent to a post-mortem needle biopsy. The goal of this study was to better understand family and community concerns and decision-making about post-mortem needle biopsies in this low-income, predominantly Muslim country in order to design an informed consent process. Methods We conducted 16 group discussions with family members of persons who died during an outbreak of Nipah virus illness during 2004-2008 and 11 key informant interviews with their community and religious leaders. Qualitative researchers first described the post-mortem needle biopsy procedure and asked participants whether they would have agreed to this procedure during the outbreak. Researchers probed participants about the circumstances under which the procedure would be acceptable, if any, their concerns about the procedure, and how they would decide whether or not to consent to the procedure. Results Overall, most participants agreed that post-mortem needle biopsies would be acceptable in some situations, particularly if they benefitted society. This procedure was deemed more acceptable than full autopsy because it would not require major delays in burial or remove organs, and did not require cutting or stitching of the body. It could be performed before the ritual bathing of the body in either the community or hospital setting. However, before consent would be granted for such a procedure, the research team must gain the trust of the family and community which could be difficult. Although consent may only be provided by the guardians of the body, decisions about consent for the procedure would involve extended family and community and religious leaders. Conclusions The possible acceptability of this procedure during outbreaks represents an important opportunity to better characterize cause of death in Bangladesh which could lead to improved public health interventions to prevent these deaths. Obstacles for research teams will include engaging all major stakeholders in decision-making and quickly building a trusting relationship with the family and community, which will be difficult given the short window of time prior to the ritual bathing of the body. PMID:21668979
SPIRIT trial: A phase III pragmatic trial of an advance care planning intervention in ESRD.
Song, Mi-Kyung; Unruh, Mark L; Manatunga, Amita; Plantinga, Laura C; Lea, Janice; Jhamb, Manisha; Kshirsagar, Abhijit V; Ward, Sandra E
2018-01-01
Advance care planning (ACP) is a central tenet of dialysis care, but the vast majority of dialysis patients report never engaging in ACP discussions with their care providers. Over the last decade, we have developed and iteratively tested SPIRIT (Sharing Patient's Illness Representation to Increase Trust), a theory-based, patient- and family-centered advance care planning intervention. SPIRIT is a six-step, two-session, face-to-face intervention to promote cognitive and emotional preparation for end-of-life decision making for patients with ESRD and their surrogates. In these explanatory trials, SPIRIT was delivered by trained research nurses. Findings consistently revealed that patients and surrogates in SPIRIT showed significant improvement in preparedness for end-of-life decision making, and surrogates in SPIRIT reported significantly improved post-bereavement psychological outcomes after the patient's death compared to a no treatment comparison condition. As a critical next step, we are conducting an effectiveness-implementation study. This study is a multicenter, clinic-level cluster randomized pragmatic trial to evaluate the effectiveness of SPIRIT delivered by dialysis care providers as part of routine care in free-standing outpatient dialysis clinics, compared to usual care plus delayed SPIRIT implementation. Simultaneously, we will evaluate the implementation of SPIRIT, including sustainability. We will recruit 400 dyads of patients at high risk of death in the next year and their surrogates from 30 dialysis clinics in four states. This trial of SPIRIT will generate novel, meaningful insights about improving ACP in dialysis care. ClinicalTrials.govNCT03138564, registered 05/01/2017. Copyright © 2017 Elsevier Inc. All rights reserved.
Tong, Allison; Sautenet, Benedicte; Poggio, Emilio D; Lentine, Krista L; Oberbauer, Rainer; Mannon, Roslyn; Murphy, Barbara; Padilla, Benita; Chow, Kai Ming; Marson, Lorna; Chadban, Steve; Craig, Jonathan C; Ju, Angela; Manera, Karine E; Hanson, Camilla S; Josephson, Michelle A; Knoll, Greg
2018-02-22
Graft loss, a critically important outcome for transplant recipients, is variably defined and measured, and incompletely reported in trials. We convened a consensus workshop on establishing a core outcome measure for graft loss for all trials in kidney transplantation. Twenty-five kidney transplant recipients/caregivers and 33 health professionals from eight countries participated. Transcripts were analyzed thematically. Five themes were identified. "Graft loss as a continuum" conceptualizes graft loss as a process, but requiring an endpoint defined as a discrete event. In "defining an event with precision and accuracy," loss of graft function requiring chronic dialysis (minimum 90 days) provided an objective and practical definition; re-transplant would capture preemptive transplantation; relisting was readily measured but would overestimate graft loss; and allograft nephrectomy was redundant in being preceded by dialysis. However, the thresholds for renal replacement therapy varied. Conservative management was regarded as too ambiguous and complex to use routinely. "Distinguishing death-censored graft loss" would ensure clarity and meaningfulness in interpreting results. "Consistent reporting for decision-making" by specifying time points and metrics (ie time to event) was suggested. "Ease of ascertainment and data collection" of the outcome from registries could support use of registry data to efficiently extend follow-up of trial participants. A practical and meaningful core outcome measure for graft loss may be defined as chronic dialysis or re-transplant, and distinguished from loss due to death. Consistent reporting of graft loss using standardized metrics and time points may improve the contribution of trials to decision-making in kidney transplantation.
Shared Decision-Making in the Management of Congenital Vascular Malformations.
Horbach, Sophie E R; Ubbink, Dirk T; Stubenrouch, Fabienne E; Koelemay, Mark J W; van der Vleuten, Carine J M; Verhoeven, Bas H; Reekers, Jim A; Schultze Kool, Leo J; van der Horst, Chantal M A M
2017-03-01
In shared decision-making, clinicians and patients arrive at a joint treatment decision, by incorporating best available evidence and the patients' personal values and preferences. Little is known about the role of shared decision-making in managing patients with congenital vascular malformations, for which preference-sensitive decision-making seems obvious. The authors investigated preferences regarding decision-making and current shared decision-making behavior during physician-patient encounters. In two Dutch university hospitals, adults and children with congenital vascular malformations facing a treatment-related decision were enrolled. Before the consultation, patients (or parents of children) expressed their preference regarding decision-making (Control Preferences Scale). Afterward, participants completed shared decision-making-specific questionnaires (nine-item Shared Decision-Making Questionnaire, CollaboRATE, and satisfaction), and physicians completed the Shared Decision-Making Questionnaire-Physician questionnaire. Consultations were audiotaped and patient involvement was scored by two independent researchers using the five-item Observing Patient Involvement instrument. All questionnaire results were expressed on a scale of 0 to 100 (optimum shared decision-making). Fifty-five participants (24 parents and 31 adult patients) were included. Two-thirds preferred the shared decision-making approach (Control Preferences Scale). Objective five-item Observing Patient Involvement scores were low (mean ± SD, 31 ± 15), whereas patient and physician Shared Decision-Making Questionnaire scores were high, with means of 68 ± 18 and 68 ± 19, respectively. The median CollaboRATE score was 93. There was no clear relationship between shared decision-making and satisfaction scores. Although adults and parents of children with vascular malformations express a strong desire for shared decision-making, objective shared decision-making behavior is still lacking, most likely because of poor awareness of the shared decision-making concept among patients, parents, and physicians. To improve shared decision-making practice, targeted interventions (e.g., decision aids, staff training) are essential.
Defibrillator patients should not be denied a peaceful death.
Westerdahl, Annika Kinch; Sutton, Richard; Frykman, Viveka
2015-03-01
Implantable defibrillators (ICDs) prevent sudden cardiac death. With declining health, ICD therapy may prolong death and expose the patient to unnecessary pain and anxiety. Few studies have addressed end of life care in ICD patients. The objective of this study was to investigate end of life in ICD patients, with respect to location of death; duration between do-not-resuscitate (DNR)-orders and deactivation of ICD therapy or DNR and time of death. A descriptive analysis of 65 deceased ICD patients, all whom had a written DNR-order before death, is presented. The majority (86%) was treated in hospitals, mainly (63%) university hospitals, and many (33%) in cardiology wards. Despite DNR-order, ICD shock therapy was active in 51% of all patients. In those with therapy deactivated at death, therapy deactivation was carried out two days or more after DNR-order in more than a third (38%). The time from DNR decision to death in patients with therapy active had a median of four days (IQR 1-38). During the last 24h of life, 24% of the patients experienced shock treatment. The majority of ICD patients with a DNR-order were treated in university hospitals. More than half still had shock treatment active at time of death with a median of four days or more between DNR decision and death. Patients with therapy deactivated, two days or more elapsed in more than a third from DNR decision to deactivation of therapy, exposing patients to a high risk of painful shocks before death. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Decision Making on the Labor and Delivery Unit: An Investigation of Influencing Factors.
Gregory, Megan E; Sonesh, Shirley C; Feitosa, Jennifer; Benishek, Lauren E; Hughes, Ashley M; Salas, Eduardo
2017-09-01
Objective The aim of this study was to describe the relationship between negative affect (NA), decision-making style, time stress, and decision quality in health care. Background Health care providers must often make swift, high-stakes decisions. Influencing factors of the decision-making process in this context have been understudied. Method Within a sample of labor and delivery nurses, physicians, and allied personnel, we used self-report measures to examine the impact of trait factors, including NA, decision-making style, and perceived time stress, on decision quality in a situational judgment test (Study 1). In Study 2, we observed the influence of state NA, state decision-making style, state time stress, and their relationship with decision quality on real clinical decisions. Results In Study 1, we found that trait NA significantly predicted avoidant decision-making style. Furthermore, those who were higher on trait time stress and trait avoidant decision-making style exhibited poorer decisions. In Study 2, we observed associations between state NA with state avoidant and analytical decision-making styles. We also observed that these decision-making styles, when considered in tandem with time stress, were influential in predicting clinical decision quality. Conclusion NA predicts some decision-making styles, and decision-making style can affect decision quality under time stress. This is particularly true for state factors. Application Individual differences, such as affect and decision-making style, should be considered during selection. Training to reduce time stress perceptions should be provided.
Boland, Laura; McIsaac, Daniel I; Lawson, Margaret L
2016-04-01
To explore multiple stakeholders' perceived barriers to and facilitators of implementing shared decision making and decision support in a tertiary paediatric hospital. An interpretive descriptive qualitative study was conducted using focus groups and interviews to examine senior hospital administrators', clinicians', parents' and youths' perceived barriers to and facilitators of shared decision making and decision support implementation. Data were analyzed using inductive thematic analysis. Fifty-seven stakeholders participated. Six barrier and facilitator themes emerged. The main barrier was gaps in stakeholders' knowledge of shared decision making and decision support. Facilitators included compatibility between shared decision making and the hospital's culture and ideal practices, perceptions of positive patient and family outcomes associated with shared decision making, and positive attitudes regarding shared decision making and decision support. However, youth attitudes regarding the necessity and usefulness of a decision support program were a barrier. Two themes were both a barrier and a facilitator. First, stakeholder groups were uncertain which clinical situations are suitable for shared decision making (eg, new diagnoses, chronic illnesses, complex decisions or urgent decisions). Second, the clinical process may be hindered if shared decision making and decision support decrease efficiency and workflow; however, shared decision making may reduce repeat visits and save time over the long term. Specific knowledge translation strategies that improve shared decision making knowledge and match specific barriers identified by each stakeholder group may be required to promote successful shared decision making and decision support implementation in the authors' paediatric hospital.
Yek, J L J; Lee, A K Y; Tan, J A D; Lin, G Y; Thamotharampillai, T; Abdullah, H R
2017-02-02
A cross-sectional study to ascertain what the Singapore population would regard as material risk in the anaesthesia consent-taking process and identify demographic factors that predict patient preferences in medical decision-making to tailor a more patient-centered informed consent. A survey was performed involving patients 21 years old and above who attended the pre-operative evaluation clinic over a 1-month period in Singapore General Hospital. Questionnaires were administered to assess patients' perception of material risks, by trained interviewers. Patients' demographics were obtained. Mann-Whitney U test and Kruskal-Wallis one-way analysis of variance was used. Statistical significance was taken at p < 0.05. Four hundred fourteen patients were eligible of which 26 refused to participate and 24 were excluded due to language barrier. 364 patients were recruited. A higher level of education (p < 0.007), being employed (p < 0.046) and younger age group (p < 0.003) are factors identified in patients who wanted greater participation in medical decisions. Gender, marital status, type of surgery, and previous surgical history did not affect their level of participation. The complications most patients knew about were Nausea (64.8%), Drowsiness (62.4%) and Surgical Wound Pain (58.8%). Patients ranked Heart Attack (59.3%), Death (53.8%) and Stroke (52.7%) as the most significant risks that they wanted to be informed about in greater detail. Most patients wanted to make a joint decision with the anaesthetist (52.2%), instead of letting the doctor decide (37.1%) or deciding for themselves (10.7%). Discussion with the anaesthetist (61.3%) is the preferred medium of communication compared to reading a pamphlet (23.4%) or watching a video (15.4%). Age and educational level can influence medical decision-making. Despite the digital age, most patients still prefer a clinic consult instead of audio-visual multimedia for pre-operative anaesthetic counselling. The local population appears to place greater importance on rare but serious complications compared to common complications. This illustrates the need to contextualize information provided during informed consent to strengthen the doctor-patient relationship.
Decision-making on shared sanitation in the informal settlements of Kisumu, Kenya.
Simiyu, Sheillah; Swilling, Mark; Cairncross, Sandy
2017-10-01
Unlike most quantitative studies that investigate decision-making on investing in sanitation, this study adopted a qualitative approach to investigate decision-making on shared sanitation in the informal settlements of Kisumu city, in Kenya. Using a grounded theory approach, landlords and tenants were interviewed to identify sanitation decisions, individuals involved in decision-making and factors influencing decision-making. The results indicate that the main sanitation decisions are on investment, emptying, repair and cleaning. Landlords make investment, emptying and repair decisions, while tenants make cleaning decisions. Absentee landlords are less involved in most decision-making compared to live-in landlords, who rarely consult tenants in decision-making. Tenants make decisions after consultations with a third party and often collectively with other tenants. Sanitation interventions in informal settlements should thus, target landlords and tenants, with investment efforts being directed at landlords and maintenance efforts at tenants.
Gillespie, Mary
2010-11-01
Nurses' clinical decision-making is a complex process that holds potential to influence the quality of care provided and patient outcomes. The evolution of nurses' decision-making that occurs with experience has been well documented. In addition, literature includes numerous strategies and approaches purported to support development of nurses' clinical decision-making. There has been, however, significantly less attention given to the process of assessing nurses' clinical decision-making and novice clinical educators are often challenged with knowing how to best support nurses and nursing students in developing their clinical decision-making capacity. The Situated Clinical Decision-Making framework is presented for use by clinical educators: it provides a structured approach to analyzing nursing students' and novice nurses' decision-making in clinical nursing practice, assists educators in identifying specific issues within nurses' clinical decision-making, and guides selection of relevant strategies to support development of clinical decision-making. A series of questions is offered as a guide for clinical educators when assessing nurses' clinical decision-making. The discussion presents key considerations related to analysis of various decision-making components, including common sources of challenge and errors that may occur within nurses' clinical decision-making. An exemplar illustrates use of the framework and guiding questions. Implications of this approach for selection of strategies that support development of clinical decision-making are highlighted. Copyright © 2010 Elsevier Ltd. All rights reserved.
Withholding and withdrawing life-support therapy in an Emergency Department: prospective survey.
Le Conte, Philippe; Baron, Denis; Trewick, David; Touzé, Marie Dominique; Longo, Céline; Vial, Irshaad; Yatim, Danielle; Potel, Gille
2004-12-01
Few studies have focused on decisions to withdraw or withhold life-support therapies in the emergency department. Our objectives were to identify clinical situations where life-support was withheld or withdrawn, the criteria used by physicians to justify their decisions, the modalities necessary to implement these decisions, patient disposition, and outcome. Prospective unicenter survey in an Emergency Department of a tertiary care teaching hospital. All non-trauma patients (n=119) for whom a decision to withhold or withdraw life-sustaining treatments was taken between January and September 1998. Choice of criteria justifying the decision to withhold or withdraw life-sustaining treatments, time interval from ED admission to the decision; type of decision implemented, outcome. Fourteen thousand eight hundred and seventy-five non-trauma patients were admitted during the study period, 119 were included, mean age 75+/-13 years. Resuscitation procedures were instituted for 96 (80%) patients before a subsequent decision was taken. Physicians chose on average 6+/-2 items to justify their decision; the principal acute medical disorder and futility of care were the two criteria most often used. Median time interval to reach the decision was 187 min. Withdrawal involved 37% of patients and withholding 63% of patients. The family was involved in the decision-making process in 72% of patients. The median time interval from the decision to death was 16 h (5 min to 140 days). Withdrawing and withholding life-support therapy involved elderly patients with underlying chronic cardiopulmonary disease or metastatic cancer or patients with acute non-treatable illness.
[Decision Making and Electrodermal Activity].
Kobayakawa, Mutsutaka
2016-08-01
Decision making is aided by emotions. Bodily responses, such as sweating, heartbeat, and visceral sensation, are used to monitor the emotional state during decision making. Because decision making in dairy life is complicated and cognitively demanding, these bodily signals are thought to facilitate the decision making process by assigning positive or negative values for each of the behavioral options. The sweat response in a decision making task is measured by skin conductance response (SCR). SCR in decision making is divided into two categories: anticipatory SCR is observed before making decisions, and reward/punishment SCR is observed after the outcome of the decision is perceived. Brain lesion studies in human revealed that the amygdala and ventromedial prefrontal cortex are important in decision making. Patients with lesinon in the amygdala exhibit neither the anticipatory nor reward/punishment SCRs, while patients with the ventromedial prefrontal lesions have deficits only in the anticipatory SCRs. Decision making tasks and SCR analysis have contributed to reveal the implicit aspects of decision making. Further research is necessary for clarifying the role of explicit process of decision making and its relationship with the implicit process.
McGregor, Maurice; Chen, Jun
2004-10-01
New evidence suggests that the implantable cardiac defibrillator (ICD) may be effective for primary prevention of sudden death. High instrumental cost and the potentially large number of candidates will significantly impact hospital budgets. To review the information relevant to hospital policy decisions on the use of ICDs for primary prevention. Modelling based on an evaluation of reported studies and Canadian costs, detailed in a comprehensive review available at
Orom, Heather; Biddle, Caitlin; Underwood, Willie; Nelson, Christian J.; Homish, D. Lynn
2016-01-01
Objective We explored whether active patient involvement in decision making and greater patient knowledge are associated with better treatment decision making experiences and better quality of life (QOL) among men with clinically localized prostate cancer. Localized prostate cancer treatment decision-making is an advantageous model for studying patient treatment decision-making dynamics as there are multiple treatment options and a lack of empirical evidence to recommend one over the other; consequently, it is recommended that patients be fully involved in making the decision. Methods Men with newly diagnosed clinically localized prostate cancer (N=1529) completed measures of decisional control, prostate cancer knowledge, and their decision-making experience (decisional conflict, and decision-making satisfaction and difficulty) shortly after they made their treatment decision. Prostate cancer-specific QOL was assessed 6-months after treatment. Results More active involvement in decision making and greater knowledge were associated with lower decisional conflict and higher decision-making satisfaction, but greater decision-making difficulty. An interaction between decisional control and knowledge revealed that greater knowledge was only associated with greater difficulty for men actively involved in making the decision (67% of sample). Greater knowledge, but not decisional control predicted better QOL 6-months post-treatment. Conclusion Although men who are actively involved in decision making and more knowledgeable may make more informed decisions, they could benefit from decisional support (e.g., decision-making aids, emotional support from providers, strategies for reducing emotional distress) to make the process easier. Men who were more knowledgeable about prostate cancer and treatment side effects at the time they made their treatment decision may have appraised their QOL as higher because they had realistic expectations about side effects. PMID:26957566
Orom, Heather; Biddle, Caitlin; Underwood, Willie; Nelson, Christian J; Homish, D Lynn
2016-08-01
We explored whether active patient involvement in decision making and greater patient knowledge are associated with better treatment decision-making experiences and better quality of life (QOL) among men with clinically localized prostate cancer. Localized prostate cancer treatment decision making is an advantageous model for studying patient treatment decision-making dynamics because there are multiple treatment options and a lack of empirical evidence to recommend one over the other; consequently, it is recommended that patients be fully involved in making the decision. Men with newly diagnosed clinically localized prostate cancer (N = 1529) completed measures of decisional control, prostate cancer knowledge, and decision-making experiences (decisional conflict and decision-making satisfaction and difficulty) shortly after they made their treatment decision. Prostate cancer-specific QOL was assessed at 6 months after treatment. More active involvement in decision making and greater knowledge were associated with lower decisional conflict and higher decision-making satisfaction but greater decision-making difficulty. An interaction between decisional control and knowledge revealed that greater knowledge was only associated with greater difficulty for men actively involved in making the decision (67% of sample). Greater knowledge, but not decisional control, predicted better QOL 6 months after treatment. Although men who are actively involved in decision making and more knowledgeable may make more informed decisions, they could benefit from decisional support (e.g., decision-making aids, emotional support from providers, strategies for reducing emotional distress) to make the process easier. Men who were more knowledgeable about prostate cancer and treatment side effects at the time that they made their treatment decision may have appraised their QOL as higher because they had realistic expectations about side effects. © The Author(s) 2016.
Boland, Laura; McIsaac, Daniel I; Lawson, Margaret L
2016-01-01
OBJECTIVE: To explore multiple stakeholders’ perceived barriers to and facilitators of implementing shared decision making and decision support in a tertiary paediatric hospital. METHODS: An interpretive descriptive qualitative study was conducted using focus groups and interviews to examine senior hospital administrators’, clinicians’, parents’ and youths’ perceived barriers to and facilitators of shared decision making and decision support implementation. Data were analyzed using inductive thematic analysis. RESULTS: Fifty-seven stakeholders participated. Six barrier and facilitator themes emerged. The main barrier was gaps in stakeholders’ knowledge of shared decision making and decision support. Facilitators included compatibility between shared decision making and the hospital’s culture and ideal practices, perceptions of positive patient and family outcomes associated with shared decision making, and positive attitudes regarding shared decision making and decision support. However, youth attitudes regarding the necessity and usefulness of a decision support program were a barrier. Two themes were both a barrier and a facilitator. First, stakeholder groups were uncertain which clinical situations are suitable for shared decision making (eg, new diagnoses, chronic illnesses, complex decisions or urgent decisions). Second, the clinical process may be hindered if shared decision making and decision support decrease efficiency and workflow; however, shared decision making may reduce repeat visits and save time over the long term. CONCLUSIONS: Specific knowledge translation strategies that improve shared decision making knowledge and match specific barriers identified by each stakeholder group may be required to promote successful shared decision making and decision support implementation in the authors’ paediatric hospital. PMID:27398058
Nakao, Takashi; Ohira, Hideki; Northoff, Georg
2012-01-01
Most experimental studies of decision-making have specifically examined situations in which a single less-predictable correct answer exists (externally guided decision-making under uncertainty). Along with such externally guided decision-making, there are instances of decision-making in which no correct answer based on external circumstances is available for the subject (internally guided decision-making). Such decisions are usually made in the context of moral decision-making as well as in preference judgment, where the answer depends on the subject’s own, i.e., internal, preferences rather than on external, i.e., circumstantial, criteria. The neuronal and psychological mechanisms that allow guidance of decisions based on more internally oriented criteria in the absence of external ones remain unclear. This study was undertaken to compare decision-making of these two kinds empirically and theoretically. First, we reviewed studies of decision-making to clarify experimental–operational differences between externally guided and internally guided decision-making. Second, using multi-level kernel density analysis, a whole-brain-based quantitative meta-analysis of neuroimaging studies was performed. Our meta-analysis revealed that the neural network used predominantly for internally guided decision-making differs from that for externally guided decision-making under uncertainty. This result suggests that studying only externally guided decision-making under uncertainty is insufficient to account for decision-making processes in the brain. Finally, based on the review and results of the meta-analysis, we discuss the differences and relations between decision-making of these two types in terms of their operational, neuronal, and theoretical characteristics. PMID:22403525
Pick, Justin M; Batra, Anjan S
2017-01-01
Implantable cardioverter-defibrillators effectively reduce the rate of sudden cardiac death in children. Significant efforts have been made to better characterise the indications for their placement, and over the past two decades there has been a shift in their use from secondary to primary prevention. Primary prevention includes placement in patients thought to be at high risk of sudden cardiac death before the patient experiences any event. Secondary prevention includes placement after a high-risk event including sustained ventricular tachycardia or resuscitated cardiac arrest. Although liberal device implantation may be appealing even in patients having marginal indications, studies have shown high rates of adverse effects including inappropriate device discharges and the need for re-intervention because of hardware malfunction. The indications for placement of an implantable cardioverter-defibrillator, whether for primary or secondary prevention of sudden cardiac death, vary based on cardiac pathology. This review will assist the provider in understanding the risks and benefits of device implantation in order to enhance the shared decision-making capacity of patients, families, and providers.
The Least Bad Option: Unilateral Extubation after Declaration of Death by Neurological Criteria.
Bliss, Sally E; Macauley, Robert C
2015-01-01
Typically, the determination of death by neurological criteria follows a very specific protocol. An apnea test is performed with further confirmation as necessary, and then mechanical ventilation is withdrawn with the consent of the family after they have had an opportunity to "say goodbye," and at such a time to permit organ retrieval (with authorization of the patient or consent of the next of kin). Such a process maximizes transparency and ensures generalizability. In exceptional circumstances, however, it may be necessary to deviate from this protocol in order to spare family members unnecessary suffering and to reduce moral distress felt by clinical staff. It may also be appropriate, we argue, to refrain from even inquiring about organ donation when the next-of-kin is not only certain to refuse, but lacks the decision-making capacity to potentially consent. The case described in this article calls into question generally reliable assumptions about determination of death by neurological criteria, where the best the clinical team could do for the patient and his family was "the least bad option." Copyright 2015 The Journal of Clinical Ethics. All rights reserved.
Study regarding the survival of patients suffering a traumatic cardiac arrest.
Georgescu, V; Tudorache, O; Nicolau, M; Strambu, V
2015-01-01
Severe trauma is the most frequent cause of death in young people, in civilized countries with major social and vital costs. The speed of diagnostic decision making and the precocity of treatment approaches are both essential and depend on the specialists' colaboration. The present study aims to emphasize the actual situation of medical interventions in case of cardiorespiratory arrest due to trauma. 1387 patients who suffered a cardio respiratory arrest both traumatic and non-traumatic were included in order to point out the place of traumatic arrest. Resuscitation of such patients is considered useless and resource consumer by many trauma practitioners who are reporting survival rates of 0%-3.5%. As the determinant of lesions, trauma etiology was as it follows car accidents - 43%, high falls - 30%, suicidal attempts - 3%, domestic violence - 3%, other causes - 21%. Hypovolemia remains the major cause of cardiac arrest and death and that is why the efforts of emergency providers (trauma team) must be oriented towards "hidden death" in order to avoid it. This condition could be revealed and solved easier with minimal diagnostic and therapeutic maneuvers in the emergency department.
One Way of Thinking About Decision Making.
ERIC Educational Resources Information Center
Dalis, Gus T.; Strasser, Ben B.
The authors present the DALSTRA model of decision making, a descriptive statement of ways individuals or groups respond to different kinds of decision-making problems they encounter. Decision making is viewed in two phases: the decision-making antecedents (whether to decide, how to decide) and the modes of decision making (Chance/Impulse,…
Clergy Views on a Good Versus a Poor Death: Ministry to the Terminally Ill
Cooke, Amanda; Resmini, Jonathan; Garinther, Alexander; Chow, Vinca; Quiñones, Rebecca; Noveroske, Sarah; Baccari, Andrew; Smith, Patrick T.; Peteet, John; Balboni, Tracy A.; Balboni, Michael J.
2015-01-01
Abstract Background: Clergy are often important sources of guidance for patients and family members making medical decisions at the end-of-life (EOL). Previous research revealed spiritual support by religious communities led to more aggressive care at the EOL, particularly among minority patients. Understanding this phenomenon is important to help address disparities in EOL care. Objective: The study objective was to explore and describe clergy perspectives regarding “good” versus “poor” death within the participant's spiritual tradition. Methods: This was a qualitative, descriptive study. Community clergy from various spiritual backgrounds, geographical locations within the United States, and races/ethnicities were recruited. Participants included 35 clergy who participated in one-on-one interviews (N = 14) and two focus groups (N = 21). Semistructured interviews explored clergy viewpoints on factors related to a “good death.” Principles of grounded theory were used to identify a final set of themes and subthemes. Results: A good death was characterized by wholeness and certainty and emphasized being in relationship with God. Conversely, a “poor death” was characterized by separation, doubt, and isolation. Clergy identified four primary determinants of good versus poor death: dignity, preparedness, physical suffering, and community. Participants expressed appreciation for contextual factors that affect the death experience; some described a “middle death,” or one that integrates both positive and negative elements. Location of death was not viewed as a significant contributing factor. Conclusions: Understanding clergy perspectives regarding quality of death can provide important insights to help improve EOL care, particularly for patients highly engaged with faith communities. These findings can inform initiatives to foster productive relationships between clergy, clinicians, and congregants and reduce health disparities. PMID:26317801
Strategic Decision Making Paradigms: A Primer for Senior Leaders
2009-07-01
decision making . STRATEGIC DECISION MAKING Strategic Change: There are several strategic...influenced by stakeholders outside of the organization. The Ontology of Strategic Decision Making . Strategic decisions are non-routine and involve...Coates USAWC, July 2009 5 The Complexity of Strategic Decision Making Strategic decisions entail “ill-structured,”6 “messy” or
NASA Astrophysics Data System (ADS)
Gresch, Helge; Hasselhorn, Marcus; Bögeholz, Susanne
2013-10-01
Dealing with socio-scientific issues in science classes enables students to participate productively in controversial discussions concerning ethical topics, such as sustainable development. In this respect, well-structured decision-making processes are essential for elaborate reasoning. To foster decision-making competence, a computer-based programme was developed that trains secondary school students (grades 11-13) in decision-making strategies. The main research question is: does training students to use these strategies foster decision-making competence? In addition, the influence of meta-decision aids was examined. Students conducted a task analysis to select an appropriate strategy prior to the decision-making process. Hence, the second research question is: does combining decision-making training with a task analysis enhance decision-making competence at a higher rate? To answer these questions, 386 students were tested in a pre-post-follow-up control-group design that included two training groups (decision-making strategies/decision-making strategies combined with a task analysis) and a control group (decision-making with additional ecological information instead of strategic training). An open-ended questionnaire was used to assess decision-making competence in situations related to sustainable development. The decision-making training led to a significant improvement in the post-test and the follow-up, which was administered three months after the training. Long-term effects on the quality of the students' decisions were evident for both training groups. Gains in competence when reflecting upon the decision-making processes of others were found, to a lesser extent, in the training group that received the additional meta-decision training. In conclusion, training in decision-making strategies is a promising approach to deal with socio-scientific issues related to sustainable development.
Kon, Alexander A; Davidson, Judy E; Morrison, Wynne; Danis, Marion; White, Douglas B
2016-01-01
Shared decision making is endorsed by critical care organizations; however, there remains confusion about what shared decision making is, when it should be used, and approaches to promote partnerships in treatment decisions. The purpose of this statement is to define shared decision making, recommend when shared decision making should be used, identify the range of ethically acceptable decision-making models, and present important communication skills. The American College of Critical Care Medicine and American Thoracic Society Ethics Committees reviewed empirical research and normative analyses published in peer-reviewed journals to generate recommendations. Recommendations approved by consensus of the full Ethics Committees of American College of Critical Care Medicine and American Thoracic Society were included in the statement. Six recommendations were endorsed: 1) DEFINITION: Shared decision making is a collaborative process that allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient's values, goals, and preferences. 2) Clinicians should engage in a shared decision making process to define overall goals of care (including decisions regarding limiting or withdrawing life-prolonging interventions) and when making major treatment decisions that may be affected by personal values, goals, and preferences. 3) Clinicians should use as their "default" approach a shared decision making process that includes three main elements: information exchange, deliberation, and making a treatment decision. 4) A wide range of decision-making approaches are ethically supportable, including patient- or surrogate-directed and clinician-directed models. Clinicians should tailor the decision-making process based on the preferences of the patient or surrogate. 5) Clinicians should be trained in communication skills. 6) Research is needed to evaluate decision-making strategies. Patient and surrogate preferences for decision-making roles regarding value-laden choices range from preferring to exercise significant authority to ceding such authority to providers. Clinicians should adapt the decision-making model to the needs and preferences of the patient or surrogate.
Clinical decision-making and secondary findings in systems medicine.
Fischer, T; Brothers, K B; Erdmann, P; Langanke, M
2016-05-21
Systems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology (especially systems biology); "big data" statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers working to generate systems medicine knowledge and clinicians working to apply it. This article focuses on three key challenges: First, we will discuss the conflicts in decision-making that can arise when healthcare providers committed to principles of experimental medicine or evidence-based medicine encounter individualized recommendations derived from computer algorithms. We will explore in particular whether controlled experiments, such as comparative effectiveness trials, should mediate the translation of systems medicine, or if instead individualized findings generated through "big data" approaches can be applied directly in clinical decision-making. Second, we will examine the case of the Riyadh Intensive Care Program Mortality Prediction Algorithm, pejoratively referred to as the "death computer," to demonstrate the ethical challenges that can arise when big-data-driven scoring systems are applied in clinical contexts. We argue that the uncritical use of predictive clinical algorithms, including those envisioned for systems medicine, challenge basic understandings of the doctor-patient relationship. Third, we will build on the recent discourse on secondary findings in genomics and imaging to draw attention to the important implications of secondary findings derived from the joint analysis of data from diverse sources, including data recorded by patients in an attempt to realize their "quantified self." This paper examines possible ethical challenges that are likely to be raised as systems medicine to be translated into clinical medicine. These include the epistemological challenges for clinical decision-making, the use of scoring systems optimized by big data techniques and the risk that incidental and secondary findings will significantly increase. While some ethical implications remain still hypothetical we should use the opportunity to prospectively identify challenges to avoid making foreseeable mistakes when systems medicine inevitably arrives in routine care.
Bakibinga, Pauline; Kamande, Eva; Omuya, Milka; Ziraba, Abdhalah K; Kyobutungi, Catherine
2017-07-20
Improving maternal and newborn survival remains major aspirations for many countries in the Global South. Slum settlements, a result of rapid urbanisation in many developing countries including Kenya, exhibit high levels of maternal and neonatal mortality. There are limited referral mechanisms for sick neonates and their mothers from the community to healthcare facilities with ability to provide adequate care. In this study, we specifically plan to develop and assess the added value of having community health volunteers (CHVs) use smartphones to identify and track mothers and children in a bid to reduce pregnancy-related complications and newborn deaths in the urban slums of Kamukunji subcounty in Nairobi, Kenya. This is a quasi-experimental study. We are implementing an innovative, mHealth application known as mobile Partnership for Maternal, Newborn and Child Health (mPAMANECH) which uses dynamic mobile phone and web-portal solutions to enable CHVs make timely decisions on the best course of action in their management of mothers and newborns at community level. The application is based on existing guidelines and protocols in use by CHVs. Currently, CHVs conduct weekly home visits and make decisions from memory or using unwieldy manual tools, and thus prone to making errors. mPAMANECH has an in-built algorithm that makes it easier, faster and more likely for CHVs to make the right management decision. We are working with a network of selected CHVs and maternity centres to pilot test the tool. To measure the impact of the intervention, baseline and end-line surveys will be conducted. Data will be obtained through qualitative and quantitative methods. Ethical approval for the study was obtained from the African Medical Research Foundation. Key messages from the results will be packaged and disseminated through meetings, conference presentations, reports, fact sheets and academic publications to facilitate uptake by policy-makers. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Difficulties in estimating the human burden of canine rabies.
Taylor, Louise H; Hampson, Katie; Fahrion, Anna; Abela-Ridder, Bernadette; Nel, Louis H
2017-01-01
Current passive surveillance data for canine rabies, particularly for the regions where the burden is highest, are inadequate for appropriate decision making on control efforts. Poor enforcement of existing legislation and poor implementation of international guidance reduce the effectiveness of surveillance systems, but another set of problems relates to the fact that canine rabies is an untreatable condition which affects very poor sectors of society. This results in an unknown, but potentially large proportion of rabies victims dying outside the health system, deaths that are unlikely to be recorded by surveillance systems based on health center records. This article critically evaluates the potential sources of information on the number of human deaths attributable to canine rabies, and how we might improve the estimates required to move towards the goal of global canine rabies elimination. Copyright © 2015 The Authors. Published by Elsevier B.V. All rights reserved.
End-of-Life Care and Psychiatry: Current Trends and Future Directions in India
Deodhar, Jayita K.
2016-01-01
Although 80% of the deaths worldwide occur in middle- and low-income countries such as India, there is less awareness of end-of-life care (EOLC) for people with chronic, serious, progressive, or advanced life-limiting illnesses, including dementia. EOLC involves good communication, clinical decision-making, liaison with medical teams and families, comprehensive assessment of and specialized interventions for physical, psychological, spiritual, and social needs of patients and their caregivers. The psychiatrist can play a significant role in each of the above domains in EOLC. The current trends in India are examined, including ambiguities between EOLC and euthanasia. Future directions include formulating a national EOLC policy, providing appropriate services and training. The psychiatrist should get involved in this process, with major responsibilities in providing good quality EOLC for patients with both life-limiting physical illnesses and severe mental disorders, supporting their caregivers, and ensuring dignity in death. PMID:28031629
Dhukaram, Anandhi Vivekanandan; Baber, Chris
2015-06-01
Patients make various healthcare decisions on a daily basis. Such day-to-day decision making can have significant consequences on their own health, treatment, care, and costs. While decision aids (DAs) provide effective support in enhancing patient's decision making, to date there have been few studies examining patient's decision making process or exploring how the understanding of such decision processes can aid in extracting requirements for the design of DAs. This paper applies Cognitive Work Analysis (CWA) to analyse patient's decision making in order to inform requirements for supporting self-care decision making. This study uses focus groups to elicit information from elderly cardiovascular disease (CVD) patients concerning a range of decision situations they face on a daily basis. Specifically, the focus groups addressed issues related to the decision making of CVD in terms of medication compliance, pain, diet and exercise. The results of these focus groups are used to develop high level views using CWA. CWA framework decomposes the complex decision making problem to inform three approaches to DA design: one design based on high level requirements; one based on a normative model of decision-making for patients; and the third based on a range of heuristics that patients seem to use. CWA helps in extracting and synthesising decision making from different perspectives: decision processes, work organisation, patient competencies and strategies used in decision making. As decision making can be influenced by human behaviour like skills, rules and knowledge, it is argued that patients require support to different types of decision making. This paper also provides insights for designers in using CWA framework for the design of effective DAs to support patients in self-management. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
Setta, Susan M; Shemie, Sam D
2015-03-11
This paper explores definitions of death from the perspectives of several world and indigenous religions, with practical application for health care providers in relation to end of life decisions and organ and tissue donation after death. It provides background material on several traditions and explains how different religions derive their conclusions for end of life decisions from the ethical guidelines they proffer. Research took several forms beginning with a review of books and articles written by ethicists and observers of Bön, Buddhism, Christianity, Hinduism, Indigenous Traditions, Islam, Judaism, Shinto and Taoism. It then examined sources to which these authors referred in footnotes and bibliographies. In addition, material was gathered through searches of data bases in religious studies, general humanities, social sciences and medicine along with web-based key word searches for current policies in various traditions. Religious traditions provide their adherents with explanations for the meaning and purpose of life and include ethical analysis for the situations in which their followers find themselves. This paper aims to increase cultural competency in practitioners by demonstrating the reasoning process religions use to determine what they believe to be the correct decision in the face of death. Patterns emerge in the comparative study of religious perspectives on death. Western traditions show their rootedness in Judaism in their understanding of the human individual as a finite, singular creation. Although the many branches of Western religions do not agree on precisely how to determine death, they are all able to locate a moment of death in the body. In Eastern traditions personhood is not defined in physical terms. From prescribing the location of death, to resisting medical intervention and definitions of death, Eastern religions, in their many forms, incorporate the beliefs and practices that preceded them. Adding to the complexity for these traditions is the idea that death is a process that continues after the body has met most empirical criteria for determining death. For Hinduism and Buddhism, the cessation of heart, brain and lung function is the beginning of the process of dying--not the end.
Decision-making in Swiss home-like childbirth: A grounded theory study.
Meyer, Yvonne; Frank, Franziska; Schläppy Muntwyler, Franziska; Fleming, Valerie; Pehlke-Milde, Jessica
2017-12-01
Decision-making in midwifery, including a claim for shared decision-making between midwives and women, is of major significance for the health of mother and child. Midwives have little information about how to share decision-making responsibilities with women, especially when complications arise during birth. To increase understanding of decision-making in complex home-like birth settings by exploring midwives' and women's perspectives and to develop a dynamic model integrating participatory processes for making shared decisions. The study, based on grounded theory methodology, analysed 20 interviews of midwives and 20 women who had experienced complications in home-like births. The central phenomenon that arose from the data was "defining/redefining decision as a joint commitment to healthy childbirth". The sub-indicators that make up this phenomenon were safety, responsibility, mutual and personal commitments. These sub-indicators were also identified to influence temporal conditions of decision-making and to apply different strategies for shared decision-making. Women adopted strategies such as delegating a decision, making the midwife's decision her own, challenging a decision or taking a decision driven by the dynamics of childbirth. Midwives employed strategies such as remaining indecisive, approving a woman's decision, making an informed decision or taking the necessary decision. To respond to recommendations for shared responsibility for care, midwives need to strengthen their shared decision-making skills. The visual model of decision-making in childbirth derived from the data provides a framework for transferring clinical reasoning into practice. Copyright © 2017 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.
Mahmoodi, Neda; Sargeant, Sally
2017-01-01
This interview-based study uses phenomenology as a theoretical framework and thematic analysis to challenge existing explanatory frameworks of shared decision-making, in an exploration of women's experiences and perceptions of shared decision-making for adjuvant treatment in breast cancer. Three themes emerged are as follows: (1) women's desire to participate in shared decision-making, (2) the degree to which shared decision-making is perceived to be shared and (3) to what extent are women empowered within shared decision-making. Studying breast cancer patients' subjective experiences of adjuvant treatment decision-making provides a broader perspective on patient participatory role preferences and doctor-patient power dynamics within shared decision-making for breast cancer.
Measuring Shared Decision Making in Psychiatric Care
Salyers, Michelle P.; Matthias, Marianne S.; Fukui, Sadaaki; Holter, Mark C.; Collins, Linda; Rose, Nichole; Thompson, John; Coffman, Melinda; Torrey, William C.
2014-01-01
Objective Shared decision making is widely recognized to facilitate effective health care; tools are needed to measure the level of shared decision making in psychiatric practice. Methods A coding scheme assessing shared decision making in medical settings (1) was adapted, including creation of a manual. Trained raters analyzed 170 audio recordings of psychiatric medication check-up visits. Results Inter-rater reliability among three raters for a subset of 20 recordings ranged from 67% to 100% agreement for the presence of each of nine elements of shared decision making and 100% for the overall agreement between provider and consumer. Just over half of the decisions met minimum criteria for shared decision making. Shared decision making was not related to length of visit after controlling for complexity of decision. Conclusions The shared decision making rating scale appears to reliably assess shared decision making in psychiatric practice and could be helpful for future research, training, and implementation efforts. PMID:22854725
Representing Chronic Disorders of Consciousness:
Hall, Alice
2014-01-01
This article explores problems of voicelessness in Isabel Allende’s Paula (1995) through a focus on the story of Paula’s illness and subsequent death from porphyria in 1992. I argue that the language, categories and stories through which disorders of consciousness are constructed are central to ethical decision-making and shifting cultural understandings of these conditions. In Paula, Allende uses an experimental, hybrid narrative form that draws on illness narrative, magical realist novel, national history, letters, and memoir to challenge traditional depictions of “coma” and to create a new public space through which these issues of voicelessness can be addressed. PMID:25055709
Linking decision-making research and cancer prevention and control: important themes.
McCaul, Kevin D; Peters, Ellen; Nelson, Wendy; Stefanek, Michael
2005-07-01
This article describes 6 themes underlying the multiple presentations from the Basic and Applied Decision Making in Cancer Control meeting, held February 19-20, 2004. The following themes have important implications for research and practice linking basic decision-making research to cancer prevention and control: (a) Traditional decision-making theories fail to capture real-world decision making, (b) decision makers are often unable to predict future preferences, (c) preferences are often constructed on the spot and thus are influenced by situational cues, (d) decision makers often rely on feelings rather than beliefs when making a decision, (e) the perspective of the decision maker is critical in determining preferences, and (f) informed decision making may--or may not--yield the best decisions.
Marzban, Maryam; Haghdoost, Ali-Akbar; Dortaj, Eshagh; Bahrampour, Abbas; Zendehdel, Kazem
2015-03-01
The incidence and mortality rates of cancer are increasing worldwide, particularly in the developing countries. Valid data are needed for measuring the cancer burden and making appropriate decisions toward cancer control. We evaluated the completeness of death registry with regard to cancer death in Fars Province, I. R. of Iran. We used data from three sources in Fars Province, including the national death registry (source 1), the follow-up data from the pathology-based cancer registry (source 2) and hospital based records (source 3) during 2004 - 2006. We used the capture-recapture method and estimated underestimation and the true age standardized mortality rate (ASMR) for cancer. We used log-linear (LL) modeling for statistical analysis. We observed 1941, 480, and 355 cancer deaths in sources 1, 2 and 3, respectively. After data linkage, we estimated that mortality registry had about 40% underestimation for cancer death. After adjustment for this underestimation rate, the ASMR of cancer in the Fars Province for all cancer types increased from 44.8 per 100,000 (95% CI: 42.8 - 46.7) to 76.3 per 100,000 (95% CI: 73.3 - 78.9), accounting for 3309 (95% CI: 3151 - 3293) cancer deaths annually. The mortality rate of cancer is considerably higher than the rates reported by the routine registry in Iran. Improvement in the validity and completeness of the mortality registry is needed to estimate the true mortality rate caused by cancer in Iran.
Borlase, B C; Baxter, J T; Benotti, P N; Stone, M; Wood, E; Forse, R A; Blackburn, G L; Steele, G
1991-06-01
The rationing of medical care prioritizes the need for early predictors of death in the surgical intensive care unit (SICU). We prospectively studied 100 consecutive SICU admissions, looking for predictors of early death in the SICU and the cost implications of these findings. Serial APACHE II scores on days 1, 3, and 5 were subjected to multinomial logistic regression analysis to determine significant predictors of death in the SICU on day 1. Survivors had significantly lower (p less than 0.05) mean day-1 APACHE II scores than had nonsurvivors (13.6 vs 22.1). Half of the patients with scores greater than 18 died, and all patients with scores on day 1 of 25 or greater died. Significant predictors of death on SICU day 1 were APACHE II scores, Acute Physiology Score, Glasgow Coma Score, creatinine level, and Chronic Health Evaluation Score. Forty-one patients had been transferred from community hospitals as a results of acute illness; this population accounted for two thirds of the deaths in the SICU. Ten of 18 nonsurvivors were predicted on day 1, with these patients incurring a total cost of approximately $1 million. If therapy had been modified on days 5, 10, or 15, the potential cost savings would have been $340,000, $240,000, or $140,000, respectively. Integration of the results of this study into the management decision-making process and treatment guidelines may reduce the cost of care in the SICU.
Story, William T.; Burgard, Sarah A.
2012-01-01
This study examines the association between maternal health service utilization and household decision-making in Bangladesh. Most studies of the predictors of reproductive health service use focus on women’s reports; however, men are often involved in these decisions as well. Recently, studies have started to explore the association between health outcomes and reports of household decision-making from both husbands and wives as matched pairs. Many studies of household decision-making emphasize the importance of the wife alone making decisions; however, some have argued that joint decision-making between husbands and wives may yield better reproductive health outcomes than women making decisions without input or agreement from their partners. Husbands’ involvement in decision-making is particularly important in Bangladesh because men often dominate household decisions related to large, health-related purchases. We use matched husband and wife reports about who makes common household decisions to predict use of antenatal and skilled delivery care, using data from the 2007 Bangladesh Demographic and Health Survey. Results from regression analyses suggest that it is important to consider whether husbands and wives give concordant responses about who makes household decisions since discordant reports about who makes these decisions are negatively associated with reproductive health care use. In addition, compared to joint decision-making, husband-only decision-making is negatively associated with antenatal care use and skilled delivery care. Finally, associations between household decision-making arrangements and health service utilization vary depending on whose report is used and the type of health service utilized. PMID:23068556
Story, William T; Burgard, Sarah A
2012-12-01
This study examines the association between maternal health service utilization and household decision-making in Bangladesh. Most studies of the predictors of reproductive health service utilization focus on women's reports; however, men are often involved in these decisions as well. Recently, studies have started to explore the association between health outcomes and reports of household decision-making from both husbands and wives as matched pairs. Many studies of household decision-making emphasize the importance of the wife alone making decisions; however, some have argued that joint decision-making between husbands and wives may yield better reproductive health outcomes than women making decisions without input or agreement from their partners. Husbands' involvement in decision-making is particularly important in Bangladesh because men often dominate household decisions related to large, health-related purchases. We use matched husband and wife reports about who makes common household decisions to predict use of antenatal and skilled delivery care, using data from the 2007 Bangladesh Demographic and Health Survey. Results from regression analyses suggest that it is important to consider whether husbands and wives give concordant responses about who makes household decisions since discordant reports about who makes these decisions are negatively associated with reproductive health care use. In addition, compared to joint decision-making, husband-only decision-making is negatively associated with antenatal care use and skilled delivery care. Finally, associations between household decision-making arrangements and health service utilization vary depending on whose report is used and the type of health service utilized. Copyright © 2012 Elsevier Ltd. All rights reserved.
Patient-centered outcomes research in appendicitis in children: Bridging the knowledge gap.
Chau, Danielle B; Ciullo, Sean S; Watson-Smith, Debra; Chun, Thomas H; Kurkchubasche, Arlet G; Luks, Francois I
2016-01-01
Patient-centered outcomes research (PCOR) aims to give patients a better understanding of the treatment options to enable optimal decision-making. As nonoperative alternatives are now being evaluated in children for acute appendicitis, we surveyed patients and their families regarding their knowledge of appendicitis and evaluated whether providing basic medical information would affect their perception of the disease and allow them to more rationally consider the treatment alternatives. Families of children aged 5-18 presenting to the Emergency Department with suspected appendicitis were recruited for a tablet-based interactive educational survey. One hundred subjects (caregivers and patients ≥ 15 years) were questioned before and after an education session about their understanding of appendicitis, including questions on three hypothetical treatment options: urgent appendectomy, antibiotics alone, or initial antibiotics followed by elective appendectomy. Subjects were clearly informed that urgent appendectomy is currently the standard of care. Only 14% of respondents correctly identified the mortality rate of appendicitis (17 deaths/year according to the 2010 US census) when compared with other extremely rare causes of death. Fifty-four and 31% thought it was more common than death from lightning (40/year) and hunting-associated deaths (44/year), respectively. Eighty-two percent of respondents believed it "likely" or "very likely" that the appendix would rupture if operation was at all delayed, and 81% believed that rupture of the appendix would rapidly lead to severe complications and death. In univariate analysis, this perception was significantly more prevalent for mothers (odds ratio, (OR) 5.19, confidence interval (CI) 1.33-21.15), and subjects who knew at least one friend or relative who had a negative experience with appendicitis (OR 5.53, CI 1.40-25.47). Following education, these perceptions changed significantly (53% still believed that immediate operation was necessary, and 47% believed perforation led to great morbidity and potential mortality, P<0.001). In a survey of potential appendicitis treatment options, urgent appendectomy was considered a "good" or "very good" option by 74% of subjects, compared with 68% for antibiotics only without appendectomy and 49% for initial antibiotic therapy followed by elective outpatient appendectomy. There was a striking knowledge gap in the participant perception of appendicitis. Appropriate education can correct anecdotally supported misconceptions. Adequate education may empower patients to make better-informed decisions about their medical care and may be important for future studies in alternative treatments for appendicitis in children. Copyright © 2016 Elsevier Inc. All rights reserved.
Thiruganasambandamoorthy, Venkatesh; Taljaard, Monica; Stiell, Ian G; Sivilotti, Marco L A; Murray, Heather; Vaidyanathan, Aparna; Rowe, Brian H; Calder, Lisa A; Lang, Eddy; McRae, Andrew; Sheldon, Robert; Wells, George A
2015-08-01
Variations in emergency department (ED) syncope management have not been well studied. The goals of this study were to assess variations in management, and emergency physicians' risk perception and disposition decision making. We conducted a prospective study of adults with syncope in six EDs in four cities over 32 months. We collected patient characteristics, ED management, disposition, physicians' prediction probabilities at index presentation and followed patients for 30 days for serious outcomes: death, myocardial infarction (MI), arrhythmia, structural heart disease, pulmonary embolism, significant hemorrhage, or procedural interventions. We used descriptive statistics, ROC curves, and regression analyses. We enrolled 3662 patients: mean age 54.3 years, and 12.9 % were hospitalized. Follow-up data were available for 3365 patients (91.9 %) and 345 patients (10.3 %) suffered serious outcomes: 120 (3.6 %) after ED disposition including 48 patients outside the hospital. After accounting for differences in patient case mix, the rates of ED investigations and disposition were significantly different (p < 0.0001) across the four study cities; as were the rates of 30-day serious outcomes (p < 0.0001) and serious outcomes after ED disposition (p = 0.0227). There was poor agreement between physician risk perception and both observed event rates and referral patterns (p < 0.0001). Only 76.7 % (95 % CI 68.1-83.6) of patients with serious outcomes were appropriately referred. There are large and unexplained differences in ED syncope management. Moreover, there is poor agreement between physician risk perception, disposition decision making, and serious outcomes after ED disposition. A valid risk-stratification tool might help standardize ED management and improve disposition decision making.
Shared decision-making in epilepsy management.
Pickrell, W O; Elwyn, G; Smith, P E M
2015-06-01
Policy makers, clinicians, and patients increasingly recognize the need for greater patient involvement in clinical decision-making. Shared decision-making helps address these concerns by providing a framework for clinicians and patients to make decisions together using the best evidence. Shared decision-making is applicable to situations where several acceptable options exist (clinical equipoise). Such situations occur commonly in epilepsy, for example, in decisions regarding the choice of medication, treatment in pregnancy, and medication withdrawal. A talk model is a way of implementing shared decision-making during consultations, and decision aids are useful tools to assist in the process. Although there is limited evidence available for shared decision-making in epilepsy, there are several benefits of shared decision-making in general including improved decision quality, more informed choices, and better treatment concordance. Copyright © 2015 Elsevier Inc. All rights reserved.
[Shared decision-making in medical practice--patient-centred communication skills].
van Staveren, Remke
2011-01-01
Most patients (70%) want to participate actively in important healthcare decisions, the rest (30%) prefer the doctor to make the decision for them. Shared decision-making provides more patient satisfaction, a better quality of life and contributes to a better doctor-patient relationship. Patients making their own decision generally make a well considered and medically sensible choice. In shared decision-making the doctor asks many open questions, gives and requests much information, asks if the patient wishes to participate in the decision-making and explicitly takes into account patient circumstances and preferences. Shared decision-making should remain an individual choice and should not become a new dogma.
Russell, Louise B.; Pentakota, Sri Ram; Toscano, Cristiana Maria; Cosgriff, Ben; Sinha, Anushua
2016-01-01
Background. Despite longstanding infant vaccination programs in low- and middle-income countries (LMICs), pertussis continues to cause deaths in the youngest infants. A maternal monovalent acellular pertussis (aP) vaccine, in development, could prevent many of these deaths. We estimated infant pertussis mortality rates at which maternal vaccination would be a cost-effective use of public health resources in LMICs. Methods. We developed a decision model to evaluate the cost-effectiveness of maternal aP immunization plus routine infant vaccination vs routine infant vaccination alone in Bangladesh, Nigeria, and Brazil. For a range of maternal aP vaccine prices, one-way sensitivity analyses identified the infant pertussis mortality rates required to make maternal immunization cost-effective by alternative benchmarks ($100, 0.5 gross domestic product [GDP] per capita, and GDP per capita per disability-adjusted life-year [DALY]). Probabilistic sensitivity analysis provided uncertainty intervals for these mortality rates. Results. Infant pertussis mortality rates necessary to make maternal aP immunization cost-effective exceed the rates suggested by current evidence except at low vaccine prices and/or cost-effectiveness benchmarks at the high end of those considered in this report. For example, at a vaccine price of $0.50/dose, pertussis mortality would need to be 0.051 per 1000 infants in Bangladesh, and 0.018 per 1000 in Nigeria, to cost 0.5 per capita GDP per DALY. In Brazil, a middle-income country, at a vaccine price of $4/dose, infant pertussis mortality would need to be 0.043 per 1000 to cost 0.5 per capita GDP per DALY. Conclusions. For commonly used cost-effectiveness benchmarks, maternal aP immunization would be cost-effective in many LMICs only if the vaccine were offered at less than $1–$2/dose. PMID:27838677
ERIC Educational Resources Information Center
Perez, Maya; Gati, Itamar
2017-01-01
We tested the associations among the career decision-making difficulties, the career decision status, and either (a) the career decision-making profiles of 575 young adults, or (b) the coping strategies of 379 young adults. As hypothesized, a more advanced decision status was negatively associated with both career decision-making difficulties…
Edwards, Adrian; Elwyn, Glyn
2006-01-01
Abstract Background Shared decision making has practical implications for everyday health care. However, it stems from largely theoretical frameworks and is not widely implemented in routine practice. Aims We undertook an empirical study to inform understanding of shared decision making and how it can be operationalized more widely. Method The study involved patients visiting UK general practitioners already well experienced in shared decision making. After these consultations, semi‐structured telephone interviews were conducted and analysed using the constant comparative method of content analysis. Results All patients described at least some components of shared decision making but half appeared to perceive the decision as shared and half as ‘patient‐led’. However, patients exhibited some uncertainty about who had made the decision, reflecting different meanings of decision making from those described in the literature. A distinction is indicated between the process of involvement (option portrayal, exchange of information and exploring preferences for who makes the decision) and the actual decisional responsibility (who makes the decision). The process of involvement appeared to deliver benefits for patients, not the action of making the decision. Preferences for decisional responsibility varied during some consultations, generating unsatisfactory interactions when actual decisional responsibility did not align with patient preferences at that stage of a consultation. However, when conducted well, shared decision making enhanced reported satisfaction, understanding and confidence in the decisions. Conclusions Practitioners can focus more on the process of involving patients in decision making rather than attaching importance to who actually makes the decision. They also need to be aware of the potential for changing patient preferences for decisional responsibility during a consultation and address non‐alignment of patient preferences with the actual model of decision making if this occurs. PMID:17083558
The Right to Die in Chronic Disorders of Consciousness: Can We Avoid the Slippery Slope Argument?
Calabrò, Rocco Salvatore; Naro, Antonino; De Luca, Rosaria; Russo, Margherita; Caccamo, Lory; Manuli, Alfredo; Bramanti, Alessia; Bramanti, Placido
2016-01-01
Managing individuals with chronic disorders of consciousness raises ethical questions about the appropriateness of maintaining life-sustaining treatments and end-of-life decisions for those who are unable to make decisions for themselves. For many years, the positions fostering the "sanctity" of human life (i.e., life is inviolable in any case) have led to maintaining life-sustaining treatments (including artificial nutrition and hydration) in patients with disorders of consciousness, allowing them to live for as long as possible. Seldom have positions that foster "dignity" of human life (i.e., everyone has the right to a worthy death) allowed for the interruption of life-sustaining treatments in some patients with disorders of consciousness. Indeed, most ethical analyses conclude that the decision to interrupt life-sustaining therapies, including artificial nutrition and hydration, should be guided by reliable information about how the patient wants or wanted to be treated and/or whether the patient wants or wanted to live in such a condition. This would be in keeping with the principles of patient-centered medicine, and would conciliate the duty of respecting both the dignity and sanctity of life and the right to a worthy death. This "right to die" has been recognized in some countries, which have legalized euthanasia and/or physician-assisted suicide, but some groups fear that legalizing end-of-life decisions for some patients may result in the inappropriate use of euthanasia, both voluntary and nonvoluntary forms (slippery slope argument) in other patients. This review describes the current opinions and ethical issues concerning end-of-life decisions in patients with disorders of consciousness, with a focus on the impact misdiagnoses of disorders of consciousness may have on end-of-life decisions, the concept of "dignity" and "sanctity" of human life in view of end-of-life decisions, and the risk of the slippery slope argument when dealing with euthanasia and end-of-life decisions. We argue that the patient's diagnosis, prognosis, and wishes should be central to determining the most appropriate therapeutic approach and end-of-life decisions for that individual. Each patient's diagnosis, prognosis, and wishes should also be central to legislation that guarantees the right to die and prevents the slippery slope argument through the establishment of evidence-based criteria and protocol for managing these patients with disorders of consciousness.
Toward an Expanded Definition of Adaptive Decision Making.
ERIC Educational Resources Information Center
Phillips, Susan D.
1997-01-01
Uses the lifespan, life-space model to examine the definition of adaptive decision making. Reviews the existing definition of adaptive decision making as "rational" decision making and offers alternate perspectives on decision making with an emphasis on the implications of using the model. Makes suggestions for future theory, research,…
Costa, Dorcas Lamounier; Rocha, Regina Lunardi; Chaves, Eldo de Brito Ferreira; Batista, Vivianny Gonçalves de Vasconcelos; Costa, Henrique Lamounier; Costa, Carlos Henrique Nery
2016-01-01
Early identification of patients at higher risk of progressing to severe disease and death is crucial for implementing therapeutic and preventive measures; this could reduce the morbidity and mortality from kala-azar. We describe a score set composed of four scales in addition to software for quick assessment of the probability of death from kala-azar at the point of care. Data from 883 patients diagnosed between September 2005 and August 2008 were used to derive the score set, and data from 1,031 patients diagnosed between September 2008 and November 2013 were used to validate the models. Stepwise logistic regression analyses were used to derive the optimal multivariate prediction models. Model performance was assessed by its discriminatory accuracy. A computational specialist system (Kala-Cal(r)) was developed to speed up the calculation of the probability of death based on clinical scores. The clinical prediction score showed high discrimination (area under the curve [AUC] 0.90) for distinguishing death from survival for children ≤2 years old. Performance improved after adding laboratory variables (AUC 0.93). The clinical score showed equivalent discrimination (AUC 0.89) for older children and adults, which also improved after including laboratory data (AUC 0.92). The score set also showed a high, although lower, discrimination when applied to the validation cohort. This score set and Kala-Cal(r) software may help identify individuals with the greatest probability of death. The associated software may speed up the calculation of the probability of death based on clinical scores and assist physicians in decision-making.
Registered nurses' decision-making regarding documentation in patients' progress notes.
Tower, Marion; Chaboyer, Wendy; Green, Quentine; Dyer, Kirsten; Wallis, Marianne
2012-10-01
To examine registered nurses' decision-making when documenting care in patients' progress notes. What constitutes effective nursing documentation is supported by available guidelines. However, ineffective documentation continues to be cited as a major cause of adverse events for patients. Decision-making in clinical practice is a complex process. To make an effective decision, the decision-maker must be situationally aware. The concept of situation awareness and its implications for making safe decisions has been examined extensively in air safety and more recently is being applied to health. The study was situated in a naturalistic paradigm. Purposive sampling was used to recruit 17 registered nurses who used think-aloud research methods when making decisions about documenting information in patients' progress notes. Follow-up interviews were conducted to validate interpretations. Data were analysed systematically for evidence of cues that demonstrated situation awareness as nurses made decisions about documentation. Three distinct decision-making scenarios were illuminated from the analysis: the newly admitted patient, the patient whose condition was as expected and the discharging patient. Nurses used mental models for decision-making in documenting in progress notes, and the cues nurses used to direct their assessment of patients' needs demonstrated situation awareness at different levels. Nurses demonstrate situation awareness at different levels in their decision-making processes. While situation awareness is important, it is also important to use an appropriate decision-making framework. Cognitive continuum theory is suggested as a decision-making model that could support situation awareness when nurses made decisions about documenting patient care. Because nurses are key decision-makers, it is imperative that effective decisions are made that translate into safe clinical care. Including situation awareness training, combined with employing cognitive continuum theory as a decision-making framework, provides a powerful means of guiding nurses' decision-making. © 2012 Blackwell Publishing Ltd.
Promoting advance directives among African Americans: a faith-based model.
Bullock, Karen
2006-02-01
Studies show that African Americans are less likely than other ethnic groups to complete advance directives. However, what influences African Americans' decisions to complete or not complete advance directives is unclear. Using a faith-based promotion model, 102 African Americans aged 55 years or older were recruited from local churches and community-based agencies to participate in a pilot study to promote advance care planning. Focus groups were used to collect data on participants' preferences for care, desire to make personal choices, values and attitudes, beliefs about death and dying, and advance directives. A standardized interview was used in the focus groups, and the data were organized and analyzed using NUDIST 4 software (QRS Software, Victoria, Australia). Three fourths of the participants refused to complete advance directives. The following factors influenced the participants' decisions about end-of-life care and completion of an advance directive: spirituality; view of suffering, death, and dying; social support networks; barriers to utilization; and mistrust of the health care system. The dissemination of information apprises individuals of their right to self-determine about their care, but educational efforts may not produce a significant change in behavior toward completion of advance care planning. Thus, ongoing efforts are needed to improve the trust that African Americans have in medical and health care providers.
Whitty, Christopher J M
2017-05-26
The tragic West African Ebola epidemic claimed many lives, but would have been worse still if scientific insights from many disciplines had not been integrated to create a strong technical response. Epidemiology and modelling triggered the international response and guided where response efforts were directed; virology, engineering and clinical science helped reduce deaths and transmission in and from hospitals and treatment centres; social sciences were key to reducing deaths from funerals and in the community; diagnostic and operational research made the response more efficient; immunology and vaccine research contributed to the final stages of the epidemic and will help prevent future epidemics. These varied scientific contributions had to be integrated into a combined narrative, communicated to policymakers to inform decisions, and used by courageous local and international responders in the field in real time. Not every area of science was optimal, and in particular, clinical trials of simple interventions such as fluid management were slow to be adopted and sharing of data was initially poor. This Ebola epidemic demonstrated how science can respond to a major emergency, but also has lessons for better responses in future infectious emergencies.This article is part of the themed issue 'The 2013-2016 West African Ebola epidemic: data, decision-making and disease control'. © 2017 The Author(s).
Hinduism and death with dignity: historic and contemporary case examples.
Dewar, Rajan; Cahners, Nancy; Mitchell, Christine; Forrow, Lachlan
2015-01-01
An estimated 1.2 to 2.3 million Hindus live in the United States. End-of-life care choices for a subset of these patients may be driven by religious beliefs. In this article, we present Hindu beliefs that could strongly influence a devout person's decisions about medical care, including end-of-life care. We provide four case examples (one sacred epic, one historical example, and two cases from current practice) that illustrate Hindu notions surrounding pain and suffering at the end of life. Chief among those is the principle of karma, through which one reaps the benefits and penalties for past deeds. Deference to one's spouse or family is another important Hindu value, especially among Hindu women, which can impact the decision-making process and challenge the Western emphasis on autonomy. In addition, the Hindu embrace of astrology can lead to a desire to control the exact time of death. Confounding any generalizations, a Hindu patient may reject or accept treatments based on the individual patient's or family's interpretation of any given tradition. Through an awareness of some of the fundamental practices in Hinduism and the role of individual interpretation within the tradition, clinicians will be better able to support their Hindu patients and families at the end of life. Copyright 2015 The Journal of Clinical Ethics. All rights reserved.
A Youth Suicide Prevention Plan for Canada: A Systematic Review of Reviews.
Bennett, Kathryn; Rhodes, Anne E; Duda, Stephanie; Cheung, Amy H; Manassis, Katharina; Links, Paul; Mushquash, Christopher; Braunberger, Peter; Newton, Amanda S; Kutcher, Stanley; Bridge, Jeffrey A; Santos, Robert G; Manion, Ian G; Mclennan, John D; Bagnell, Alexa; Lipman, Ellen; Rice, Maureen; Szatmari, Peter
2015-06-01
We conducted an expedited knowledge synthesis (EKS) to facilitate evidence-informed decision making concerning youth suicide prevention, specifically school-based strategies and nonschool-based interventions designed to prevent repeat attempts. Systematic review of review methods were applied. Inclusion criteria were as follows: systematic review or meta-analysis; prevention in youth 0 to 24 years; peer-reviewed English literature. Review quality was determined with AMSTAR (a measurement tool to assess systematic reviews). Nominal group methods quantified consensus on recommendations derived from the findings. No included review addressing school-based prevention (n = 7) reported decreased suicide death rates based on randomized controlled trials (RCTs) or controlled cohort studies (CCSs), but reduced suicide attempts, suicidal ideation, and proxy measures of suicide risk were reported (based on RCTs and CCSs). Included reviews addressing prevention of repeat suicide attempts (n = 14) found the following: emergency department transition programs may reduce suicide deaths, hospitalizations, and treatment nonadherence (based on RCTs and CCSs); training primary care providers in depression treatment may reduce repeated attempts (based on one RCT); antidepressants may increase short-term suicide risk in some patients (based on RCTs and meta-analyses); this increase is offset by overall population-based reductions in suicide associated with antidepressant treatment of youth depression (based on observational studies); and prevention with psychosocial interventions requires further evaluation. No review addressed sex or gender differences systematically, Aboriginal youth as a special population, harm, or cost-effectiveness. Consensus on 6 recommendations ranged from 73% to 100%. Our EKS facilitates decision maker access to what is known about effective youth suicide prevention interventions. A national research-to-practice network that links researchers and decision makers is recommended to implement and evaluate promising interventions; to eliminate the use of ineffective or harmful interventions; and to clarify prevention intervention effects on death by suicide, suicide attempts, and suicidal ideation. Such a network could position Canada as a leader in youth suicide prevention.
A Youth Suicide Prevention Plan for Canada: A Systematic Review of Reviews
Bennett, Kathryn; Rhodes, Anne E; Duda, Stephanie; Cheung, Amy H; Manassis, Katharina; Links, Paul; Mushquash, Christopher; Braunberger, Peter; Newton, Amanda S; Kutcher, Stanley; Bridge, Jeffrey A; Santos, Robert G; Manion, Ian G; McLennan, John D; Bagnell, Alexa; Lipman, Ellen; Rice, Maureen; Szatmari, Peter
2015-01-01
Objective: We conducted an expedited knowledge synthesis (EKS) to facilitate evidence-informed decision making concerning youth suicide prevention, specifically school-based strategies and nonschool-based interventions designed to prevent repeat attempts. Methods: Systematic review of review methods were applied. Inclusion criteria were as follows: systematic review or meta-analysis; prevention in youth 0 to 24 years; peer-reviewed English literature. Review quality was determined with AMSTAR (a measurement tool to assess systematic reviews). Nominal group methods quantified consensus on recommendations derived from the findings. Results: No included review addressing school-based prevention (n = 7) reported decreased suicide death rates based on randomized controlled trials (RCTs) or controlled cohort studies (CCSs), but reduced suicide attempts, suicidal ideation, and proxy measures of suicide risk were reported (based on RCTs and CCSs). Included reviews addressing prevention of repeat suicide attempts (n = 14) found the following: emergency department transition programs may reduce suicide deaths, hospitalizations, and treatment nonadherence (based on RCTs and CCSs); training primary care providers in depression treatment may reduce repeated attempts (based on one RCT); antidepressants may increase short-term suicide risk in some patients (based on RCTs and meta-analyses); this increase is offset by overall population-based reductions in suicide associated with antidepressant treatment of youth depression (based on observational studies); and prevention with psychosocial interventions requires further evaluation. No review addressed sex or gender differences systematically, Aboriginal youth as a special population, harm, or cost-effectiveness. Consensus on 6 recommendations ranged from 73% to 100%. Conclusions: Our EKS facilitates decision maker access to what is known about effective youth suicide prevention interventions. A national research-to-practice network that links researchers and decision makers is recommended to implement and evaluate promising interventions; to eliminate the use of ineffective or harmful interventions; and to clarify prevention intervention effects on death by suicide, suicide attempts, and suicidal ideation. Such a network could position Canada as a leader in youth suicide prevention. PMID:26175322
[The metaphysical dimension of animal ethics].
Walz, Norbert
2008-01-01
Utilitarian ethics recognises animals as moral objects, but it does not attribute an absolute value to human or non-human individuals. Animal ethics according to Regan defines the non-human individual as an inherent value, but concedes that humans should be given precedence over animals if a situation involves a decision between life and death. Such life and death decisions relate to the fundamental structures of biological nature. To individuals these fundamental structures (the paradox of life and death) will necessarily appear absurd. The metaphysical dimension of animal ethics tries to shed light on the connections between life and death, body and mind that underly ethical discussions and searches for alternatives to the natural organisation of life.
A timely account of the role of duration in decision making.
Ariely, D; Zakay, D
2001-09-01
The current work takes a general perspective on the role of time in decision making. There are many different relationships and interactions between time and decision making, and no single summary can do justice to this topic. In this paper we will describe a few of the aspects in which time and decision making are interleaved: (a) temporal perspectives of decisions--the various temporal orientations that decision-makers may adopt while making decisions, and the impact of such temporal orientations on the decision process and its outcomes; (b) time as a medium within which decisions take place--the nature of decision processes that occur along time; (c) time as a resource and as a contextual factor--the implications of shortage in time resources and the impact of time limits on decision making processes and performance; (d) time as a commodity--time as the subject matter of decision making. The paper ends with a few general questions on the role of duration in decision making.
What is known about parents' treatment decisions? A narrative review of pediatric decision making.
Lipstein, Ellen A; Brinkman, William B; Britto, Maria T
2012-01-01
With the increasing complexity of decisions in pediatric medicine, there is a growing need to understand the pediatric decision-making process. To conduct a narrative review of the current research on parent decision making about pediatric treatments and identify areas in need of further investigation. Articles presenting original research on parent decision making were identified from MEDLINE (1966-6/2011), using the terms "decision making," "parent," and "child." We included papers focused on treatment decisions but excluded those focused on information disclosure to children, vaccination, and research participation decisions. We found 55 papers describing 52 distinct studies, the majority being descriptive, qualitative studies of the decision-making process, with very limited assessment of decision outcomes. Although parents' preferences for degree of participation in pediatric decision making vary, most are interested in sharing the decision with the provider. In addition to the provider, parents are influenced in their decision making by changes in their child's health status, other community members, prior knowledge, and personal factors, such as emotions and faith. Parents struggle to balance these influences as well as to know when to include their child in decision making. Current research demonstrates a diversity of influences on parent decision making and parent decision preferences; however, little is known about decision outcomes or interventions to improve outcomes. Further investigation, using prospective methods, is needed in order to understand how to support parents through the difficult treatment decisions.
Nahid, Abdullah-Al; Mehrabi, Mohamad Ali; Kong, Yinan
2018-01-01
Breast Cancer is a serious threat and one of the largest causes of death of women throughout the world. The identification of cancer largely depends on digital biomedical photography analysis such as histopathological images by doctors and physicians. Analyzing histopathological images is a nontrivial task, and decisions from investigation of these kinds of images always require specialised knowledge. However, Computer Aided Diagnosis (CAD) techniques can help the doctor make more reliable decisions. The state-of-the-art Deep Neural Network (DNN) has been recently introduced for biomedical image analysis. Normally each image contains structural and statistical information. This paper classifies a set of biomedical breast cancer images (BreakHis dataset) using novel DNN techniques guided by structural and statistical information derived from the images. Specifically a Convolutional Neural Network (CNN), a Long-Short-Term-Memory (LSTM), and a combination of CNN and LSTM are proposed for breast cancer image classification. Softmax and Support Vector Machine (SVM) layers have been used for the decision-making stage after extracting features utilising the proposed novel DNN models. In this experiment the best Accuracy value of 91.00% is achieved on the 200x dataset, the best Precision value 96.00% is achieved on the 40x dataset, and the best F -Measure value is achieved on both the 40x and 100x datasets.
Composite collective decision-making
Czaczkes, Tomer J.; Czaczkes, Benjamin; Iglhaut, Carolin; Heinze, Jürgen
2015-01-01
Individual animals are adept at making decisions and have cognitive abilities, such as memory, which allow them to hone their decisions. Social animals can also share information. This allows social animals to make adaptive group-level decisions. Both individual and collective decision-making systems also have drawbacks and limitations, and while both are well studied, the interaction between them is still poorly understood. Here, we study how individual and collective decision-making interact during ant foraging. We first gathered empirical data on memory-based foraging persistence in the ant Lasius niger. We used these data to create an agent-based model where ants may use social information (trail pheromones), private information (memories) or both to make foraging decisions. The combined use of social and private information by individuals results in greater efficiency at the group level than when either information source was used alone. The modelled ants couple consensus decision-making, allowing them to quickly exploit high-quality food sources, and combined decision-making, allowing different individuals to specialize in exploiting different resource patches. Such a composite collective decision-making system reaps the benefits of both its constituent parts. Exploiting such insights into composite collective decision-making may lead to improved decision-making algorithms. PMID:26019155
Analysis of the decision-making process of nurse managers: a collective reflection.
Eduardo, Elizabete Araujo; Peres, Aida Maris; de Almeida, Maria de Lourdes; Roglio, Karina de Dea; Bernardino, Elizabeth
2015-01-01
to analyze the decision-making model adopted by nurses from the perspective of some decision-making process theories. qualitative approach, based on action research. Semi-structured questionnaires and seminars were conducted from April to June 2012 in order to understand the nature of decisions and the decision-making process of nine nurses in position of managers at a public hospital in Southern Brazil. Data were subjected to content analysis. data were classified in two categories: the current situation of decision-making, which showed a lack of systematization; the construction and collective decision-making, which emphasizes the need to develop a decision-making model. the decision-making model used by nurses is limited because it does not consider two important factors: the limits of human rationality, and the external and internal organizational environments that influence and determine right decisions.
Shared Decision-Making for Nursing Practice: An Integrative Review.
Truglio-Londrigan, Marie; Slyer, Jason T
2018-01-01
Shared decision-making has received national and international interest by providers, educators, researchers, and policy makers. The literature on shared decision-making is extensive, dealing with the individual components of shared decision-making rather than a comprehensive process. This view of shared decision-making leaves healthcare providers to wonder how to integrate shared decision-making into practice. To understand shared decision-making as a comprehensive process from the perspective of the patient and provider in all healthcare settings. An integrative review was conducted applying a systematic approach involving a literature search, data evaluation, and data analysis. The search included articles from PubMed, CINAHL, the Cochrane Central Register of Controlled Trials, and PsycINFO from 1970 through 2016. Articles included quantitative experimental and non-experimental designs, qualitative, and theoretical articles about shared decision-making between all healthcare providers and patients in all healthcare settings. Fifty-two papers were included in this integrative review. Three categories emerged from the synthesis: (a) communication/ relationship building; (b) working towards a shared decision; and (c) action for shared decision-making. Each major theme contained sub-themes represented in the proposed visual representation for shared decision-making. A comprehensive understanding of shared decision-making between the nurse and the patient was identified. A visual representation offers a guide that depicts shared decision-making as a process taking place during a healthcare encounter with implications for the continuation of shared decisions over time offering patients an opportunity to return to the nurse for reconsiderations of past shared decisions.
Ohr, Seok; Jeong, Sarah; Saul, Peter
2017-06-01
To explore specific cultural and religious beliefs and values concerning death and dying, truth telling, and advance care planning, and the preferences for end-of-life care among older persons from culturally and linguistically diverse backgrounds. Whilst literature indicates that culture impacts on end-of-life decision-making significantly, there is limited evidence on the topic. A cross-sectional survey. A total of 171 community older persons who make regular visits to 17 day care centres expressed in a questionnaire their; (1) beliefs about death and dying, truth telling, and advance care planning, and (2) preferences for end-of-life care. More than 92% of respondents believed that dying is a normal part of life, and more than 70% felt comfortable talking about death. Whilst respondents accepted dying as a normal part of life, 64% of Eastern Europeans and 53% of Asia/Pacific groups believed that death should be avoided at all costs. People from the Asia/Pacific group reported the most consensual view against all of the life-prolonging measures. Cultural and religious beliefs and values may have an impact on preferences for treatment at end-of-life. The study offers nurses empirical data to help shape conversations about end-of-life care, and thus to enhance their commitment to help people 'die well'. Information acquisition to extend understanding of each individual before proceeding with documentation of advance care planning is essential and should include retrieval of individuals' cultural and religious beliefs and values, and preferences for care. An institutional system and/or protocol that promote conversations about these among nurses and other healthcare professionals are warranted. © 2016 John Wiley & Sons Ltd.
Does future-oriented thinking predict adolescent decision making?
Eskritt, Michelle; Doucette, Jesslyn; Robitaille, Lori
2014-01-01
A number of theorists, as well as plain common sense, suggest that future-oriented thinking (FOT) should be involved in decision making; therefore, the development of FOT should be related to better quality decision making. FOT and quality of the decision making were measured in adolescents as well as adults in 2 different experiments. Though the results of the first experiment revealed an increase in quality of decision making across adolescence into adulthood, there was no relationship between FOT and decision making. In the second experiment, FOT predicted performance on a more deliberative decision-making task independent of age, but not performance on the Iowa Gambling Task (IGT). Performance on the IGT was instead related to emotion regulation. The study's findings suggest that FOT can be related to reflective decision making but not necessarily decision making that is more intuitive.
Mothers' process of decision making for gastrostomy placement.
Brotherton, Ailsa; Abbott, Janice
2012-05-01
In this article we present the findings of an exploration of mothers' discourses on decision making for gastrostomy placement for their child. Exploring in-depth interviews of a purposive sample, we analyzed the mothers' discourses of the decision-making process to understand how their experiences of the process influenced their subsequent constructions of decision making. Mothers negotiated decision making by reflecting on their personal experiences of feeding their child, either orally or via a tube, and interwove their background experiences with the communications from members of the health care team until a decision was reached. Decision making was often fraught with difficulty, resulting in anxiety and guilt. Experiences of decision making ranged from perceived coercion to true choice, which encompasses a truly child-centered decision. The resulting impact of the decision-making process on the mothers was profound. We conclude with an exploration of the implications for clinical practice and describe how health care professionals can support mothers to ensure that decision-making processes for gastrostomy placement in children are significantly improved.
Path Analysis Examining Self-Efficacy and Decision-Making Performance on a Simulated Baseball Task
ERIC Educational Resources Information Center
Hepler, Teri J.; Feltz, Deborah L.
2012-01-01
The purpose of this study was to examine the relationship between decision-making self-efficacy and decision-making performance in sport. Undergraduate students (N = 78) performed 10 trials of a decision-making task in baseball. Self-efficacy was measured before performing each trial. Decision-making performance was assessed by decision speed and…
ERIC Educational Resources Information Center
Curseu, Petru Lucian; Schruijer, Sandra G. L.
2012-01-01
This study investigates the relationship between the five decision-making styles evaluated by the General Decision-Making Style Inventory, indecisiveness, and rationality in decision making. Using a sample of 102 middle-level managers, the results show that the rational style positively predicts rationality in decision making and negatively…
Rietjens, Judith; Bruinsma, Sophie; Deliens, Luc; Sterckx, Sigrid; Mortier, Freddy; Brown, Jayne; Mathers, Nigel; van der Heide, Agnes
2015-01-01
Background: Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses. Methods: Qualitative case studies using interviews. Setting: Hospitals, the domestic home and hospices or palliative care units. Participants: In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. Results: UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient’s request. Dutch respondents emphasized making an official medical decision informed by the patient’s wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consciousness, concerns about the potential hastening of death, whether they perceived continuous sedation until death as an ‘alternative’ to euthanasia and whether they sought to follow guidelines or frameworks for practice. Conclusion: This qualitative analysis suggests that there is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands. PMID:25062816
Patients' understanding of shared decision making in a mental health setting.
Eliacin, Johanne; Salyers, Michelle P; Kukla, Marina; Matthias, Marianne S
2015-05-01
Shared decision making is a fundamental component of patient-centered care and has been linked to positive health outcomes. Increasingly, researchers are turning their attention to shared decision making in mental health; however, few studies have explored decision making in these settings from patients' perspectives. We examined patients' accounts and understanding of shared decision making. We analyzed interviews from 54 veterans receiving outpatient mental health care at a Department of Veterans Affairs Medical Center in the United States. Although patients' understanding of shared decision making was consistent with accounts published in the literature, participants reported that shared decision making goes well beyond these components. They identified the patient-provider relationship as the bedrock of shared decision making and highlighted several factors that interfere with shared decision making. Our findings highlight the importance of the patient-provider relationship as a fundamental element of shared decision making and point to areas for potential improvement. © The Author(s) 2014.
Supratikto, Gunawan; Wirth, Meg E.; Achadi, Endang; Cohen, Surekha; Ronsmans, Carine
2002-01-01
A district-based audit of maternal and perinatal mortality began during 1994 in three provinces of South Kalimantan, Indonesia. Both medical and non-medical factors were documented and an effort was made to progress from merely assessing substandard care to recommending improvements in access to care and the quality of care. Extensive discussions of cases of maternal death were held during regular meetings with providers, policy-makers and community members. The sources of information included verbal autopsies with family members and medical records. Between 1995 and 1999 the audit reviewed 130 maternal deaths. The leading causes of death were haemorrhage (41%) and hypertensive diseases (32%). Delays in decision-making and poor quality of care in health facilities were seen as contributory factors in 77% and 60% of the deaths, respectively. Economic constraints were believed to have contributed to 37% of the deaths. The distance between a patient's home and a health provider or facility did not appear to have a significant influence, nor did transport problems. The audit led to changes in the quality of obstetric care in the district. Its success was particularly attributable to the process of accountability of both health providers and policy-makers and to improved working relationships between health providers at different levels and between providers and the community. With a view to the continuation and further expansion of the audit it may be necessary to reconsider the role of the provincial team, the need of health providers for confidentiality, the added benefit of facility-based audits, the need to incorporate scientific evidence into the review process, and the possible consideration of severe complications as well as deaths. It may also be necessary to recognize that village midwives are not solely responsible for maternal deaths. PMID:11984609
Supratikto, Gunawan; Wirth, Meg E; Achadi, Endang; Cohen, Surekha; Ronsmans, Carine
2002-01-01
A district-based audit of maternal and perinatal mortality began during 1994 in three provinces of South Kalimantan, Indonesia. Both medical and non-medical factors were documented and an effort was made to progress from merely assessing substandard care to recommending improvements in access to care and the quality of care. Extensive discussions of cases of maternal death were held during regular meetings with providers, policy-makers and community members. The sources of information included verbal autopsies with family members and medical records. Between 1995 and 1999 the audit reviewed 130 maternal deaths. The leading causes of death were haemorrhage (41%) and hypertensive diseases (32%). Delays in decision-making and poor quality of care in health facilities were seen as contributory factors in 77% and 60% of the deaths, respectively. Economic constraints were believed to have contributed to 37% of the deaths. The distance between a patient's home and a health provider or facility did not appear to have a significant influence, nor did transport problems. The audit led to changes in the quality of obstetric care in the district. Its success was particularly attributable to the process of accountability of both health providers and policy-makers and to improved working relationships between health providers at different levels and between providers and the community. With a view to the continuation and further expansion of the audit it may be necessary to reconsider the role of the provincial team, the need of health providers for confidentiality, the added benefit of facility-based audits, the need to incorporate scientific evidence into the review process, and the possible consideration of severe complications as well as deaths. It may also be necessary to recognize that village midwives are not solely responsible for maternal deaths.
National evidence on the use of shared decision making in prostate-specific antigen screening.
Han, Paul K J; Kobrin, Sarah; Breen, Nancy; Joseph, Djenaba A; Li, Jun; Frosch, Dominick L; Klabunde, Carrie N
2013-01-01
Recent clinical practice guidelines on prostate cancer screening using the prostate-specific antigen (PSA) test (PSA screening) have recommended that clinicians practice shared decision making-a process involving clinician-patient discussion of the pros, cons, and uncertainties of screening. We undertook a study to determine the prevalence of shared decision making in both PSA screening and nonscreening, as well as patient characteristics associated with shared decision making. A nationally representative sample of 3,427 men aged 50 to 74 years participating in the 2010 National Health Interview Survey responded to questions on the extent of shared decision making (past physician-patient discussion of advantages, disadvantages, and scientific uncertainty associated with PSA screening), PSA screening intensity (tests in past 5 years), and sociodemographic and health-related characteristics. Nearly two-thirds (64.3%) of men reported no past physician-patient discussion of advantages, disadvantages, or scientific uncertainty (no shared decision making); 27.8% reported discussion of 1 to 2 elements only (partial shared decision making); 8.0% reported discussion of all 3 elements (full shared decision making). Nearly one-half (44.2%) reported no PSA screening, 27.8% reported low-intensity (less-than-annual) screening, and 25.1% reported high-intensity (nearly annual) screening. Absence of shared decision making was more prevalent in men who were not screened; 88% (95% CI, 86.2%-90.1%) of nonscreened men reported no shared decision making compared with 39% (95% CI, 35.0%-43.3%) of men undergoing high-intensity screening. Extent of shared decision making was associated with black race, Hispanic ethnicity, higher education, health insurance, and physician recommendation. Screening intensity was associated with older age, higher education, usual source of medical care, and physician recommendation, as well as with partial vs no or full shared decision making. Most US men report little shared decision making in PSA screening, and the lack of shared decision making is more prevalent in nonscreened than in screened men. Screening intensity is greatest with partial shared decision making, and different elements of shared decision making are associated with distinct patient characteristics. Shared decision making needs to be improved in decisions for and against PSA screening.
Rennie, Sarah C; van Rij, Andre M; Jaye, Chrystal; Hall, Katherine H
2011-06-01
Decision making is a key competency of surgeons; however, how best to assess decisions and decision makers is not clearly established. The aim of the present study was to identify criteria that inform judgments about surgical trainees' decision-making skills. A qualitative free text web-based survey was distributed to recognized international experts in Surgery, Medical Education, and Cognitive Research. Half the participants were asked to identify features of good decisions, characteristics of good decision makers, and essential factors for developing good decision-making skills. The other half were asked to consider these areas in relation to poor decision making. Template analysis of free text responses was performed. Twenty-nine (52%) experts responded to the survey, identifying 13 categories for judging a decision and 14 for judging a decision maker. Twelve features/characteristics overlapped (considered, informed, well timed, aware of limitations, communicated, knowledgeable, collaborative, patient-focused, flexible, able to act on the decision, evidence-based, and coherent). Fifteen categories were generated for essential factors leading to development of decision-making skills that fall into three major themes (personal qualities, training, and culture). The categories compiled from the perspectives of good/poor were predominantly the inverse of each other; however, the weighting given to some categories varied. This study provides criteria described by experts when considering surgical decisions, decision makers, and development of decision-making skills. It proposes a working definition of a good decision maker. Understanding these criteria will enable clinical teachers to better recognize and encourage good decision-making skills and identify poor decision-making skills for remediation.
Autonomy and couples' joint decision-making in healthcare.
Osamor, Pauline E; Grady, Christine
2018-01-11
Respect for autonomy is a key principle in bioethics. However, respecting autonomy in practice is complex because most people define themselves and make decisions influenced by a complex network of social relationships. The extent to which individual autonomy operates for each partner within the context of decision-making within marital or similar relationships is largely unexplored. This paper explores issues related to decision-making by couples (couples' joint decision-making) for health care and the circumstances under which such a practice should be respected as compatible with autonomous decision-making. We discuss the concept of autonomy as it applies to persons and to actions, human interdependency and gender roles in decision-making, the dynamics and outcomes of couples' joint decision-making, and the ethics of couples' joint decision-making. We believe that the extent to which couples' joint decision-making might be deemed ethically acceptable will vary depending on the context. Given that in many traditional marriages the woman is the less dominant partner, we consider a spectrum of scenarios of couples' joint decision-making about a woman's own health care that move from those that are acceptably autonomous to those that are not consistent with respecting the woman's autonomous decision-making. To the extent that there is evidence that both members of a couple understand a decision, intend it, and that neither completely controls the other, couples' joint decision-making should be viewed as consistent with the principle of respect for the woman's autonomy. At the other end of the spectrum are decisions made by the man without the woman's input, representing domination of one partner by the other. We recommend viewing the dynamics of couples' joint decision-making as existing on a continuum of degrees of autonomy. This continuum-based perspective implies that couples' joint decision-making should not be taken at face value but should be assessed against the specific cultural, ethnic, and religious backgrounds and personal circumstances of the individuals in question.
Integrating Decision Making and Mental Health Interventions Research: Research Directions
Wills, Celia E.; Holmes-Rovner, Margaret
2006-01-01
The importance of incorporating patient and provider decision-making processes is in the forefront of the National Institute of Mental Health (NIMH) agenda for improving mental health interventions and services. Key concepts in patient decision making are highlighted within a simplified model of patient decision making that links patient-level/“micro” variables to services-level/“macro” variables via the decision-making process that is a target for interventions. The prospective agenda for incorporating decision-making concepts in mental health research includes (a) improved measures for characterizing decision-making processes that are matched to study populations, complexity, and types of decision making; (b) testing decision aids in effectiveness research for diverse populations and clinical settings; and (c) improving the understanding and incorporation of preference concepts in enhanced intervention designs. PMID:16724158
O'Malley, A James; Cotterill, Philip; Schermerhorn, Marc L; Landon, Bruce E
2011-12-01
When 2 treatment approaches are available, there are likely to be unmeasured confounders that influence choice of procedure, which complicates estimation of the causal effect of treatment on outcomes using observational data. To estimate the effect of endovascular (endo) versus open surgical (open) repair, including possible modification by institutional volume, on survival after treatment for abdominal aortic aneurysm, accounting for observed and unobserved confounding variables. Observational study of data from the Medicare program using a joint model of treatment selection and survival given treatment to estimate the effects of type of surgery and institutional volume on survival. We studied 61,414 eligible repairs of intact abdominal aortic aneurysms during 2001 to 2004. The outcome, perioperative death, is defined as in-hospital death or death within 30 days of operation. The key predictors are use of endo, transformed endo and open volume, and endo-volume interactions. There is strong evidence of nonrandom selection of treatment with potential confounding variables including institutional volume and procedure date, variables not typically adjusted for in clinical trials. The best fitting model included heterogeneous transformations of endo volume for endo cases and open volume for open cases as predictors. Consistent with our hypothesis, accounting for unmeasured selection reduced the mortality benefit of endo. The effect of endo versus open surgery varies nonlinearly with endo and open volume. Accounting for institutional experience and unmeasured selection enables better decision-making by physicians making treatment referrals, investigators evaluating treatments, and policy makers.
Sexual Orientation, Controversy, and Science.
Bailey, J Michael; Vasey, Paul L; Diamond, Lisa M; Breedlove, S Marc; Vilain, Eric; Epprecht, Marc
2016-09-01
SummaryOngoing political controversies around the world exemplify a long-standing and widespread preoccupation with the acceptability of homosexuality. Nonheterosexual people have seen dramatic surges both in their rights and in positive public opinion in many Western countries. In contrast, in much of Africa, the Middle East, the Caribbean, Oceania, and parts of Asia, homosexual behavior remains illegal and severely punishable, with some countries retaining the death penalty for it. Political controversies about sexual orientation have often overlapped with scientific controversies. That is, participants on both sides of the sociopolitical debates have tended to believe that scientific findings-and scientific truths-about sexual orientation matter a great deal in making political decisions. The most contentious scientific issues have concerned the causes of sexual orientation-that is, why are some people heterosexual, others bisexual, and others homosexual? The actual relevance of these issues to social, political, and ethical decisions is often poorly justified, however. © The Author(s) 2016.
1986-06-06
These resuscitation guidelines were developed to "enhance the quality of care while protecting the patient's right to accept or reject therapy and to clarify the physician's role in making decisions to provide, withhold, or withdraw life support." Among the issues covered are the obligation to provide cardiopulmonary resuscitation (CPR), reasons to withhold or withdraw CPR, and the liability risks of CPR providers--laypersons, CPR teachers and organizations, and hospitals. Also discussed are the role of hospital ethics committees and medicolegal considerations in treating minors. The guidelines conclude with recommendations that states enact legislation allowing allied health personnel to render emergency care more effectively outside the hospital, providing "good samaritan" immunity to laypersons administering CPR, requiring basic life support training for police and firefighters, and acknowledging the patient's right to self determination in life-or-death decisions.
Modeling Tool for Decision Support during Early Days of an Anthrax Event.
Rainisch, Gabriel; Meltzer, Martin I; Shadomy, Sean; Bower, William A; Hupert, Nathaniel
2017-01-01
Health officials lack field-implementable tools for forecasting the effects that a large-scale release of Bacillus anthracis spores would have on public health and hospitals. We created a modeling tool (combining inhalational anthrax caseload projections based on initial case reports, effects of variable postexposure prophylaxis campaigns, and healthcare facility surge capacity requirements) to project hospitalizations and casualties from a newly detected inhalation anthrax event, and we examined the consequences of intervention choices. With only 3 days of case counts, the model can predict final attack sizes for simulated Sverdlovsk-like events (1979 USSR) with sufficient accuracy for decision making and confirms the value of early postexposure prophylaxis initiation. According to a baseline scenario, hospital treatment volume peaks 15 days after exposure, deaths peak earlier (day 5), and recovery peaks later (day 23). This tool gives public health, hospital, and emergency planners scenario-specific information for developing quantitative response plans for this threat.
An introduction to behavioural decision-making theories for paediatricians.
Haward, Marlyse F; Janvier, Annie
2015-04-01
Behavioural decision-making theories provide insights into how people make choices under conditions of uncertainty. However, few have been studied in paediatrics. This study introduces these theories, reviews current research and makes recommendations for their application within the context of shared decision-making. As parents are expected to share decision-making in paediatrics, it is critical that the fields of behavioural economics, communication and decision sciences merge with paediatric clinical ethics to optimise decision-making. ©2015 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
Shared decision-making, gender and new technologies.
Zeiler, Kristin
2007-09-01
Much discussion of decision-making processes in medicine has been patient-centred. It has been assumed that there is, most often, one patient. Less attention has been given to shared decision-making processes where two or more patients are involved. This article aims to contribute to this special area. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a shared autonomous decision-making process? Why make the distinction? Examples are drawn from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed.
What Is Known about Parents’ Treatment Decisions? A Narrative Review of Pediatric Decision Making
Lipstein, Ellen A.; Brinkman, William B.; Britto, Maria T.
2013-01-01
Background With the increasing complexity of decisions in pediatric medicine, there is a growing need to understand the pediatric decision-making process. Objective To conduct a narrative review of the current research on parent decision making about pediatric treatments and identify areas in need of further investigation. Methods Articles presenting original research on parent decision making were identified from MEDLINE (1966–6/2011), using the terms “decision making,” “parent,” and “child.” We included papers focused on treatment decisions but excluded those focused on information disclosure to children, vaccination, and research participation decisions. Results We found 55 papers describing 52 distinct studies, the majority being descriptive, qualitative studies of the decision-making process, with very limited assessment of decision outcomes. Although parents’ preferences for degree of participation in pediatric decision making vary, most are interested in sharing the decision with the provider. In addition to the provider, parents are influenced in their decision making by changes in their child’s health status, other community members, prior knowledge, and personal factors, such as emotions and faith. Parents struggle to balance these influences as well as to know when to include their child in decision making. Conclusions Current research demonstrates a diversity of influences on parent decision making and parent decision preferences; however, little is known about decision outcomes or interventions to improve outcomes. Further investigation, using prospective methods, is needed in order to understand how to support parents through the difficult treatment decisions. PMID:21969136
Johnson, Stephanie B; Butow, Phyllis N; Kerridge, Ian; Tattersall, Martin H N
2018-02-01
Patients' are encouraged to participate in advance care planning (ACP) in order to enhance their autonomy. However, controversy exists as to what it means to be autonomous and there is limited understanding of how social and structural factors may influence cancer patients' ability to exercise their autonomy. The objective of this study is to explore oncologists' and palliative care physicians' understanding of patient autonomy, how this influences reported enactment of decision-making at the end of life (EOL), and the role of ACP in EOL care. Qualitative semi-structured interviews were conducted with consultant oncologists (n = 11) and palliative medicine doctors (n = 7) working in oncology centres and palliative care units across Australia. We found that doctors generally conceptualized autonomy in terms of freedom from interference but that there was a profound disconnect between this understanding of autonomy and clinical practice in EOL decision-making. The clinicians in our study privileged care, relationships and a 'good death' above patient autonomy, and in practice were reluctant to 'abandon' their patients to total non-interference in decision-making. Patient autonomy in healthcare is bounded, as while patients were generally encouraged to express their preferences for care, medical norms about the quality and 'reasonableness' of care, the availability of services and the patients' family relationships act to enhance or limit patients' capacity to realize their preferences. While for many, this disconnect between theory and practice did not diminish the rhetorical appeal of ACP; for others, this undermined the integrity of ACP, as well as its relevance to care. For some, ACP had little to do with patient autonomy and served numerous other ethical, practical and political functions. The ethical assumptions regarding patient autonomy embedded in academic literature and policy documents relating to ACP are disconnected from the realities of clinical care. Medical norms and professional boundaries surrounding 'good deaths' have a greater influence on care than patient preference. ACP programs, therefore, may be rejected by healthcare professionals as irrelevant to care or may have the unintended consequence of limiting patient autonomy when used as a professional tool to encourage a 'right' way to die. A singular focus on bureaucratic ACP programs, which reduce patient autonomy to a 'tick box' exercise, may fail to enhance EOL care in any meaningful way.
Administrative decision making: a stepwise method.
Oetjen, Reid M; Oetjen, Dawn M; Rotarius, Timothy
2008-01-01
Today's health care organizations face tremendous challenges and fierce competition. These pressures impact the decisions that managers must execute on any given day, not to mention the ever-present constraints of time, personnel, competencies, and finances. The importance of making quality and informed decisions cannot be underestimated. Traditional decision making methods are inadequate for today's larger, more complex health care organizations and the rapidly changing health care environment. As a result, today's health care managers and their teams need new approaches to making decisions for their organizations. This article examines the managerial decision making process and offers a model that can be used as a decision making template to help managers successfully navigate the choppy health care seas. The administrative decision making model will enable health care managers and other key decision makers to avoid the common pitfalls of poor decision making and guide their organizations to success.
Miller, Keith W; Wolf, Marty J; Grodzinsky, Frances
2017-04-01
In this paper we address the question of when a researcher is justified in describing his or her artificial agent as demonstrating ethical decision-making. The paper is motivated by the amount of research being done that attempts to imbue artificial agents with expertise in ethical decision-making. It seems clear that computing systems make decisions, in that they make choices between different options; and there is scholarship in philosophy that addresses the distinction between ethical decision-making and general decision-making. Essentially, the qualitative difference between ethical decisions and general decisions is that ethical decisions must be part of the process of developing ethical expertise within an agent. We use this distinction in examining publicity surrounding a particular experiment in which a simulated robot attempted to safeguard simulated humans from falling into a hole. We conclude that any suggestions that this simulated robot was making ethical decisions were misleading.
Toward a Psychology of Surrogate Decision Making.
Tunney, Richard J; Ziegler, Fenja V
2015-11-01
In everyday life, many of the decisions that we make are made on behalf of other people. A growing body of research suggests that we often, but not always, make different decisions on behalf of other people than the other person would choose. This is problematic in the practical case of legally designated surrogate decision makers, who may not meet the substituted judgment standard. Here, we review evidence from studies of surrogate decision making and examine the extent to which surrogate decision making accurately predicts the recipient's wishes, or if it is an incomplete or distorted application of the surrogate's own decision-making processes. We find no existing domain-general model of surrogate decision making. We propose a framework by which surrogate decision making can be assessed and a novel domain-general theory as a unifying explanatory concept for surrogate decisions. © The Author(s) 2015.
Group Dynamics and Decision Making: Backcountry Recreationists in Avalanche Terrain
ERIC Educational Resources Information Center
Bright, Leslie Shay
2010-01-01
The purpose of this study was to describe and determine the prevalence of decision-making characteristics of recreational backcountry groups when making a decision of where to travel and ride in avalanche terrain from the perspective of individuals. Decision-making characteristics encompassed communication, decision-making processes, leadership,…
24 CFR 55.20 - Decision making process.
Code of Federal Regulations, 2010 CFR
2010-04-01
... 24 Housing and Urban Development 1 2010-04-01 2010-04-01 false Decision making process. 55.20... Decision making process. The decision making process for compliance with this part contains eight steps... decision making process are: (a) Step 1. Determine whether the proposed action is located in a 100-year...
Field and Experience Influences on Ethical Decision-Making in the Sciences
Mumford, Michael D.; Connelly, Shane; Murphy, Stephen T.; Devenport, Lynn D.; Antes, Alison L.; Brown, Ryan P.; Hill, Jason H.; Waples, Ethan P.
2009-01-01
Differences across fields and experience levels are frequently considered in discussions of ethical decision-making and ethical behavior. In the present study, doctoral students in the health, biological, and social sciences completed measures of ethical decision-making. The effects of field and level of experience with respect to ethical decision-making, metacognitive reasoning strategies, social-behavioral responses, and exposure to unethical events were examined. Social and biological scientists performed better than health scientists with respect to ethical decision-making. Furthermore, the ethical decision-making of health science students decreased as experience increased. Moreover, these effects appeared to be linked to the specific strategies underlying participants' ethical decision-making. The implications of these findings for ethical decision-making are discussed. PMID:19750129
Research on Bidding Decision-making of International Public-Private Partnership Projects
NASA Astrophysics Data System (ADS)
Hu, Zhen Yu; Zhang, Shui Bo; Liu, Xin Yan
2018-06-01
In order to select the optimal quasi-bidding project for an investment enterprise, a bidding decision-making model for international PPP projects was established in this paper. Firstly, the literature frequency statistics method was adopted to screen out the bidding decision-making indexes, and accordingly the bidding decision-making index system for international PPP projects was constructed. Then, the group decision-making characteristic root method, the entropy weight method, and the optimization model based on least square method were used to set the decision-making index weights. The optimal quasi-bidding project was thus determined by calculating the consistent effect measure of each decision-making index value and the comprehensive effect measure of each quasi-bidding project. Finally, the bidding decision-making model for international PPP projects was further illustrated by a hypothetical case. This model can effectively serve as a theoretical foundation and technical support for the bidding decision-making of international PPP projects.
Categorization = Decision Making + Generalization
Seger, Carol A; Peterson, Erik J.
2013-01-01
We rarely, if ever, repeatedly encounter exactly the same situation. This makes generalization crucial for real world decision making. We argue that categorization, the study of generalizable representations, is a type of decision making, and that categorization learning research would benefit from approaches developed to study the neuroscience of decision making. Similarly, methods developed to examine generalization and learning within the field of categorization may enhance decision making research. We first discuss perceptual information processing and integration, with an emphasis on accumulator models. We then examine learning the value of different decision making choices via experience, emphasizing reinforcement learning modeling approaches. Next we discuss how value is combined with other factors in decision making, emphasizing the effects of uncertainty. Finally, we describe how a final decision is selected via thresholding processes implemented by the basal ganglia and related regions. We also consider how memory related functions in the hippocampus may be integrated with decision making mechanisms and contribute to categorization. PMID:23548891
Analyzing the effectiveness of teaching and factors in clinical decision-making.
Hsieh, Ming-Chen; Lee, Ming-Shinn; Chen, Tsung-Ying; Tsai, Tsuen-Chiuan; Pai, Yi-Fong; Sheu, Min-Muh
2017-01-01
The aim of this study is to prepare junior physicians, clinical education should focus on the teaching of clinical decision-making. This research is designed to explore teaching of clinical decision-making and to analyze the benefits of an "Analogy guide clinical decision-making" as a learning intervention for junior doctors. This study had a "quasi-experimental design" and was conducted in a medical center in eastern Taiwan. Participants and Program Description: Thirty junior doctors and three clinical teachers were involved in the study. The experimental group (15) received 1 h of instruction from the "Analogy guide for teaching clinical decision-making" every day for 3 months. Program Evaluation: A "Clinical decision-making self-evaluation form" was used as the assessment tool to evaluate participant learning efficiency before and after the teaching program. Semi-structured qualitative research interviews were also conducted. We found using the analogy guide for teaching clinical decision-making could help enhance junior doctors' self-confidence. Important factors influencing clinical decision-making included workload, decision-making, and past experience. Clinical teaching using the analogy guide for clinical decision-making may be a helpful tool for training and can contribute to a more comprehensive understanding of decision-making.
Father- and Mother-Adolescent Decision-Making in Mexican-Origin Families
Perez-Brena, Norma; Updegraff, Kimberly A.; Umaña-Taylor, Adriana J.
2013-01-01
Understanding the prevalence and correlates of decisional autonomy within specific cultural contexts is necessary to fully understand how family processes are embedded within culture. The goals of this study were to describe mothers’ and fathers’ decision-making with adolescents (M = 12.51 years, SD = 0.58; 51% female), including parent-unilateral, joint, and youth-unilateral decision-making, and to examine the socio-cultural and family characteristics associated with these different types of decision-making in 246 Mexican-origin families. Mothers reported more joint and youth-unilateral decision-making and less parent-unilateral decision-making than did fathers. Fathers reported more youth-unilateral decision-making with sons than with daughters. Further, for mothers, more traditional gender role attitudes and higher levels of mother-adolescent conflict were associated with more parent-unilateral and less joint decision-making. In contrast, for fathers, lower levels of respect values were associated with more youth-unilateral decision-making with sons, and higher levels of parent-adolescent warmth was associated with more youth-unilateral decision-making with daughters. The importance of understanding the different correlates of mothers’ and fathers’ decision-making with sons versus daughters is discussed. PMID:21484288
Weil, R; Mellors, P; Fiske, T; Sorensen, J A
2014-01-01
Machinery entanglements are one of the top three causes of death in farming. Education on the risks of unshielded power take-off (PTO) equipment does not appear to significantly alter farmers' willingness to replace missing or broken shielding. Different assessments conducted in various regions of the U.S. indicate that as many as one-third to one-half of PTOs are inadequately shielded. Qualitative research was conducted with New York farmers to identify the factors that influence the decision to replace damaged or missing PTO driveline shields. Interview topics included: knowledge of entanglement risks, decisions regarding safety in general, decisions relating to PTO driveline shielding specifically, and the barriers and motivators to replacing missing or broken PTO driveline shields. Interviews with 38 farmers revealed the following themes: (1) farmers are fully aware of PTO entanglement risk, (2) insufficient time and money are primary barriers to purchasing or replacing damaged or missing PTO driveline shields, (3) PTO driveline shield designs are problematic and have led to negative experiences with shielding, and (4) risk acceptance and alternate work strategies are preferred alternatives to replacing shields. Our findings indicate that more innovative approaches will be required to make PTO driveline shield use a viable and attractive choice for farmers. New shield designs that address the practical barriers farmers face, as well as the provision of logistical and financial assistance for shield replacement, may alter the decision environment sufficiently to make replacing PTO driveline shielding a more attractive option for farmers.
Teno, Joan M; Mor, Vincent; Ward, Nicholas; Roy, Jason; Clarridge, Brian; Wennberg, John E; Fisher, Elliott S
2005-11-01
To compare the quality of end-of-life care of persons dying in regions of differing practice intensity. Mortality follow-back survey. Geographic regions in the highest and lowest deciles of intensive care unit (ICU) use. Bereaved family member or other knowledgeable informants. Unmet needs, concerns, and rating of quality of end-of-life care in five domains (physical comfort and emotional support of the decedent, shared decision-making, treatment of the dying person with respect, providing information and emotional support to family members). Decedents in high- (n=365) and low-intensity (n=413) hospital service areas (HSAs) did not differ in age, sex, education, marital status, leading causes of death, or the degree to which death was expected, but those in the high-intensity ICU HSAs were more likely to be black and to live in nonrural areas. Respondents in high-intensity HSAs were more likely to report that care was of lower quality in each domain, and these differences were statistically significant in three of five domains. Respondents from high-intensity HSAs were more likely to report inadequate emotional support for the decedent (relative risk (RR)=1.2, 95% confidence interval (CI)=1.0-1.4), concerns with shared decision-making (RR=1.8, 95% CI=1.0-2.9), inadequate information about what to expect (RR=1.5, 95% CI=1.3-1.8), and failure to treat the decedent with respect (RR=1.4, 95% CI=1.0-1.9). Overall ratings of the quality of end-of-life care were also significantly lower in high-intensity HSAs. Dying in regions with a higher use of ICU care is not associated with improved perceptions of quality of end-of-life care.
Premortem interventions in dying children to optimise organ donation: an ethical analysis.
Brierley, Joe; Shaw, David
2016-07-01
A range of interventions in dying patients can improve both the possibility of successful organ donation and the likely long-term success of transplantation. The ethical and legal issues surrounding such interventions, which most frequently occur in the context of donation after circulatory determination of death, are complex, controversial and many remain unresolved. This is true with adults, but even more so with children, where the issue of organ donation and premortem interventions to facilitate it, are highly sensitive. Essentially, such interventions are being undertaken in dying children who cannot medically benefit from them, though arguments have been advanced that becoming a donor might be in a child's extended best interest. However, certain interventions carry a potential risk, although small, of direct harm and of course overall objections to child donation after circulatory determination of death per se are still expressed in the literature. But, unlike the case in critically ill adults, those giving permission for such interventions are normally able to fully participate in decision-making, and indeed to consent, to both donation and premortem interventions. We review the issue of the use of premortem interventions in dying children to facilitate organ donation, including decision-making and ethical justification. Individual interventions are then considered, including an ethical analyse of their use. Finally, we recommend an approach using a combination of welfare checklist strategy, coupled with the establishment of an agreed zone of parental discretion about individual interventions which might be used in dying children to increase the possibility of successful organ donation. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Shared Decision-Making for Nursing Practice: An Integrative Review
Truglio-Londrigan, Marie; Slyer, Jason T.
2018-01-01
Background: Shared decision-making has received national and international interest by providers, educators, researchers, and policy makers. The literature on shared decision-making is extensive, dealing with the individual components of shared decision-making rather than a comprehensive process. This view of shared decision-making leaves healthcare providers to wonder how to integrate shared decision-making into practice. Objective: To understand shared decision-making as a comprehensive process from the perspective of the patient and provider in all healthcare settings. Methods: An integrative review was conducted applying a systematic approach involving a literature search, data evaluation, and data analysis. The search included articles from PubMed, CINAHL, the Cochrane Central Register of Controlled Trials, and PsycINFO from 1970 through 2016. Articles included quantitative experimental and non-experimental designs, qualitative, and theoretical articles about shared decision-making between all healthcare providers and patients in all healthcare settings. Results: Fifty-two papers were included in this integrative review. Three categories emerged from the synthesis: (a) communication/ relationship building; (b) working towards a shared decision; and (c) action for shared decision-making. Each major theme contained sub-themes represented in the proposed visual representation for shared decision-making. Conclusion: A comprehensive understanding of shared decision-making between the nurse and the patient was identified. A visual representation offers a guide that depicts shared decision-making as a process taking place during a healthcare encounter with implications for the continuation of shared decisions over time offering patients an opportunity to return to the nurse for reconsiderations of past shared decisions. PMID:29456779
NASA Astrophysics Data System (ADS)
Daniell, James; Wenzel, Friedemann; McLennan, Amy; Daniell, Katherine; Kunz-Plapp, Tina; Khazai, Bijan; Schaefer, Andreas; Kunz, Michael; Girard, Trevor
2016-04-01
In this study, analysis is undertaken showing disaster fatalities trends from around the world using the CATDAT Natural Disaster and Socioeconomic Indicator databases from 1900-2015. Earthquakes have caused over 2.3 million fatalities since 1900; however absolute numbers of deaths caused by them have remained rather constant over time. However, floods have caused somewhere between 1.7 and 5.4 million fatalities, mostly in the earlier half of the 20th century (depending on the 1931 China floods). Storm and storm surges (ca. 1.3 million fatalities), on the other hand, have shown an opposite trend with increasing fatalities over the century (or a lack of records in the early 1900s). Earthquakes due to their sporadic nature, do not inspire investment pre-disaster. When looking at the investment in flood control vs. earthquakes, there is a marked difference in the total investment, which has resulted in a much larger reduction in fatalities. However, a key consideration for decision-makers in different countries around the world when choosing to implement disaster sensitive design is the risk of a natural disaster death, compared to other types of deaths in their country. The creation of empirical annualised ratios of earthquake, flood and storm fatalities from the year 1900 onwards vs. other methods of fatalities (cancer, diseases, accidents etc.) for each country using the CATDAT damaging natural disasters database is undertaken. On an annualised level, very few countries show earthquakes and other disaster types to be one of the highest probability methods for death. However, in particular years with large events, annual rates can easily exceed the total death count for a particular country. An example of this is Haiti, with the equivalent earthquake death rate in 2010 exceeding the total all-cause death rate in the country. Globally, fatality rates due to disasters are generally at least 1 order of magnitude lower than other causes such as heart disease. However, in some locations in countries such as Armenia, Turkmenistan, Peru and Guatemala, the annual probability of being killed in an earthquake is as high as that of being killed due to heart disease. In this study, around 50 countries have been shown to have at least one single event year for earthquake exceeding that of all traffic fatalities, and 15 countries higher than the equivalent total death rate of the country. China has shown very high death rates due to flood, however, with from 1900-2015, this rate has reduced significantly. Floods are generally an order of magnitude less than traffic accidents measured in micromorts likely due to improved flood risk reduction. However, recent events in Philippines and Myanmar show mortality reduction due to storm surge and cyclones still require much effort. The role of life safety is increasing with risk-based disaster resistant codes becoming more commonplace globally. An examination of government funding around the world shows the correlation between retrofitting investment and disaster fatality reduction. New methods of presenting disaster statistics for political use have been used to present the information upon which such decisions are made.
Composite collective decision-making.
Czaczkes, Tomer J; Czaczkes, Benjamin; Iglhaut, Carolin; Heinze, Jürgen
2015-06-22
Individual animals are adept at making decisions and have cognitive abilities, such as memory, which allow them to hone their decisions. Social animals can also share information. This allows social animals to make adaptive group-level decisions. Both individual and collective decision-making systems also have drawbacks and limitations, and while both are well studied, the interaction between them is still poorly understood. Here, we study how individual and collective decision-making interact during ant foraging. We first gathered empirical data on memory-based foraging persistence in the ant Lasius niger. We used these data to create an agent-based model where ants may use social information (trail pheromones), private information (memories) or both to make foraging decisions. The combined use of social and private information by individuals results in greater efficiency at the group level than when either information source was used alone. The modelled ants couple consensus decision-making, allowing them to quickly exploit high-quality food sources, and combined decision-making, allowing different individuals to specialize in exploiting different resource patches. Such a composite collective decision-making system reaps the benefits of both its constituent parts. Exploiting such insights into composite collective decision-making may lead to improved decision-making algorithms. © 2015 The Author(s) Published by the Royal Society. All rights reserved.
The Relations between Decision Making in Social Relationships and Decision Making Styles
ERIC Educational Resources Information Center
Sari, Enver
2008-01-01
The research reported in this paper aimed to examine the relationships between decisiveness in social relationships, and the decision-making styles of a group of university students and to investigate the contributions of decision-making styles in predicting decisiveness in social relationship (conflict resolution, social relationship selection…
DOE Office of Scientific and Technical Information (OSTI.GOV)
Ernst, Kathleen M; Van Riemsdijk, Dr. Micheline
This article studies the participation of stakeholders in climate change decision-making in Alaska s National Parks. We place stakeholder participation within literatures on environmental and climate change decision-making. We conducted participant observation and interviews in two planning workshops to investigate the decision-making process, and our findings are three-fold. First, the inclusion of diverse stakeholders expanded climate change decision-making beyond National Park Service (NPS) institutional constraints. Second, workshops of the Climate Change Scenario Planning Project (CCSPP) enhanced institutional understandings of participants attitudes towards climate change and climate change decision-making. Third, the geographical context of climate change influences the decision-making process. Asmore » the first regional approach to climate change decision-making within the NPS, the CCSPP serves as a model for future climate change planning in public land agencies. This study shows how the participation of stakeholders can contribute to robust decisions, may move climate change decision-making beyond institutional barriers, and can provide information about attitudes towards climate change decision-making.« less
Hamilton, Jada G; Lillie, Sarah E; Alden, Dana L; Scherer, Laura; Oser, Megan; Rini, Christine; Tanaka, Miho; Baleix, John; Brewster, Mikki; Craddock Lee, Simon; Goldstein, Mary K; Jacobson, Robert M; Myers, Ronald E; Zikmund-Fisher, Brian J; Waters, Erika A
2017-02-01
Informed and shared decision making are critical aspects of patient-centered care, which has contributed to an emphasis on decision support interventions to promote good medical decision making. However, researchers and healthcare providers have not reached a consensus on what defines a good decision, nor how to evaluate it. This position paper, informed by conference sessions featuring diverse stakeholders held at the 2015 Society of Behavioral Medicine and Society for Medical Decision Making annual meetings, describes key concepts that influence the decision making process itself and that may change what it means to make a good decision: interpersonal factors, structural constraints, affective influences, and values clarification methods. This paper also proposes specific research questions within each of these priority areas, with the goal of moving medical decision making research to a more comprehensive definition of a good medical decision, and enhancing the ability to measure and improve the decision making process.
Multi-disciplinary decision making in general practice.
Kirby, Ann; Murphy, Aileen; Bradley, Colin
2018-04-09
Purpose Internationally, healthcare systems are moving towards delivering care in an integrated manner which advocates a multi-disciplinary approach to decision making. Such an approach is formally encouraged in the management of Atrial Fibrillation patients through the European Society of Cardiology guidelines. Since the emergence of new oral anticoagulants switching between oral anticoagulants (OACs) has become prevalent. This case study considers the role of multi-disciplinary decision making, given the complex nature of the agents. The purpose of this paper is to explore Irish General Practitioners' (GPs) experience of switching between all OACs for Arial Fibrillation (AF) patients; prevalence of multi-disciplinary decision making in OAC switching decisions and seeks to determine the GP characteristics that appear to influence the likelihood of multi-disciplinary decision making. Design/methodology/approach A probit model is used to determine the factors influencing multi-disciplinary decision making and a multinomial logit is used to examine the factors influencing who is involved in the multi-disciplinary decisions. Findings Results reveal that while some multi-disciplinary decision-making is occurring (64 per cent), it is not standard practice despite international guidelines on integrated care. Moreover, there is a lack of patient participation in the decision-making process. Female GPs and GPs who have initiated prescriptions for OACs are more likely to engage in multi-disciplinary decision-making surrounding switching OACs amongst AF patients. GPs with training practices were less likely to engage with cardiac consultants and those in urban areas were more likely to engage with other (non-cardiac) consultants. Originality/value For optimal decision making under uncertainty multi-disciplinary decision-making is needed to make a more informed judgement and to improve treatment decisions and reduce the opportunity cost of making the wrong decision.
Decision sidestepping: How the motivation for closure prompts individuals to bypass decision making.
Otto, Ashley S; Clarkson, Joshua J; Kardes, Frank R
2016-07-01
We all too often have to make decisions-from the mundane (e.g., what to eat for breakfast) to the complex (e.g., what to buy a loved one)-and yet there exists a multitude of strategies that allows us to make a decision. This work focuses on a subset of decision strategies that allows individuals to make decisions by bypassing the decision-making process-a phenomenon we term decision sidestepping. Critical to the present manuscript, however, we contend that decision sidestepping stems from the motivation to achieve closure. We link this proposition back to the fundamental nature of closure and how those seeking closure are highly bothered by decision making. As such, we argue that the motivation to achieve closure prompts a reliance on sidestepping strategies (e.g., default bias, choice delegation, status quo bias, inaction inertia, option fixation) to reduce the bothersome nature of decision making. In support of this framework, five experiments demonstrate that (a) those seeking closure are more likely to engage in decision sidestepping, (b) the effect of closure on sidestepping stems from the bothersome nature of decision making, and (c) the reliance on sidestepping results in downstream consequences for subsequent choice. Taken together, these findings offer unique insight into the cognitive motivations stimulating a reliance on decision sidestepping and thus a novel framework by which to understand how individuals make decisions while bypassing the decision-making process. (PsycINFO Database Record (c) 2016 APA, all rights reserved).
Samsi, Kritika; Manthorpe, Jill
2013-06-01
Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored. Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts. Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this. Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.
The badness of death and priorities in health.
Solberg, Carl Tollef; Gamlund, Espen
2016-04-14
The state of the world is one with scarce medical resources where longevity is not equally distributed. Given such facts, setting priorities in health entails making difficult yet unavoidable decisions about which lives to save. The business of saving lives works on the assumption that longevity is valuable and that an early death is worse than a late death. There is a vast literature on health priorities and badness of death, separately. Surprisingly, there has been little cross-fertilisation between the academic fields of priority setting and badness of death. Our aim is to connect philosophical discussions on the badness of death to contemporary debates in health priorities. Two questions regarding death are especially relevant to health priorities. The first question is why death is bad. Death is clearly bad for others, such as family, friends and society. Many philosophers also argue that death can be bad for those who die. This distinction is important for health priorities, because it concerns our fundamental reasons for saving lives. The second question is, 'When is the worst time to die?' A premature death is commonly considered worse than a late death. Thus, the number of good life years lost seems to matter to the badness of death. Concerning young individuals, some think the death of infants is worse than the death of adolescents, while others have contrary intuitions. Our claim is that to prioritise between age groups, we must consider the question of when it is worst to die. Deprivationism provides a more plausible approach to health priorities than Epicureanism. If Deprivationism is accepted, we will have a firmer basis for claiming that individuals, in addition to having a health loss caused by morbidity, will have a loss of good life years due to mortality. Additionally, Deprivationism highlights the importance of age and values for health priorities. Regarding age, both variants of Deprivationism imply that stillbirths are included in the Global Burden of Disease. Finally, we suggest that the Time-Relative Interest Account may serve as an alternative to the discounting and age weighting previously applied in the Global Burden of Disease.
Watanabe, Yoshiko; Takahashi, Miyako; Kai, Ichiro
2008-02-27
Over the last decade, patient involvement in treatment-related decision-making has been widely advocated in Japan, where patient-physician encounters are still under the influence of the long-standing tradition of paternalism. Despite this profound change in clinical practice, studies investigating the actual preferences of Japanese people regarding involvement in treatment-related decision-making are limited. The main objectives of this study were to (1) reveal the actual level of involvement of Japanese cancer patients in the treatment-related decision-making and their overall satisfaction with the decision-making process, and (2) consider the practical implications of increased satisfaction in cancer patients with regard to the decision-making process. We conducted semi-structured interviews with 24 Japanese cancer patients who were recruited from a cancer self-help group in Tokyo. The interviews were qualitatively analysed using the approach described by Lofland and Lofland. The analyses of the patients' interviews focused on 2 aspects: (1) who made treatment-related decisions (the physician or the patient), and (2) the informants' overall satisfaction with the decision-making process. The analyses revealed the following 5 categories of decision-making: 'patient as the active decision maker', 'doctor selection', 'wilfully entrusting the physician', 'compelled decision-making', and 'surrendering decision-making'. While the informants under the first 3 categories were fairly satisfied with the decision-making process, those under the latter 2 were extremely dissatisfied. Informants' views regarding their preferred role in the decision-making process varied substantially from complete physician control to complete patient control; the key factor for their satisfaction was the relation between their preferred involvement in decision-making and their actual level of involvement, irrespective of who the decision maker was. In order to increase patient satisfaction with regard to the treatment-related decision-making process, healthcare professionals in Japan must assess individual patient preferences and provide healthcare accordingly. Moreover, a better environment should be created in hospitals and in society to facilitate patients in expressing their preferences and appropriate resources need to be made available to facilitate their decision-making process.
Ethical Analysis of Withdrawing Total Artificial Heart Support.
DeMartino, Erin S; Wordingham, Sara E; Stulak, John M; Boilson, Barry A; Fuechtmann, Kayla R; Singh, Nausheen; Sulmasy, Daniel P; Pajaro, Octavio E; Mueller, Paul S
2017-05-01
To describe the characteristics of patients who undergo withdrawal of total artificial heart support and to explore the ethical aspects of withdrawing this life-sustaining treatment. We retrospectively reviewed the medical records of all adult recipients of a total artificial heart at Mayo Clinic from the program's inception in 2007 through June 30, 2015. Management of other life-sustaining therapies, approach to end-of-life decision making, engagement of ethics and palliative care consultation, and causes of death were analyzed. Of 47 total artificial heart recipients, 14 patients or their surrogates (30%) requested withdrawal of total artificial heart support. No request was denied by treatment teams. All 14 patients were supported with at least 1 other life-sustaining therapy. Only 1 patient was able to participate in decision making. It is widely held to be ethically permissible to withdraw a life-sustaining treatment when the treatment no longer meets the patient's health care-related goals (ie, the burdens outweigh the benefits). These data suggest that some patients, surrogates, physicians, and other care providers believe that this principle extends to the withdrawal of total artificial heart support. Copyright © 2017 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.
The potential for shared decision-making and decision aids in rehabilitation medicine.
van Til, Janine A; Drossaert, Constance H C; Punter, R Annemiek; Ijzerman, Maarten J
2010-06-01
Shared decision-making and the use of decision aids are increasingly promoted in various healthcare settings. The extent of their current use and potential in rehabilitation medicine is unknown. The aim of the present study was to explore the barriers to and facilitators of shared decision-making and use of decision aids in daily practice, and to explore the perceptions of physical and rehabilitation medicine (PRM) physicians toward them. A cross-sectional survey of 408 PRM physicians was performed (response rate 31%). PRM physicians expressed the highest levels of comfort with shared decision-making as opposed to paternalistic and informed decision-making. The majority reported that shared decision-making constituted their usual approach. The most important barriers to shared decision-making were cases in which the patient received conflicting recommendations and when the patient had difficulty accepting the disease. Key facilitators were the patient's trust in the PRM physician and the patient being knowledgeable about the disease and about treatment options. PRM physicians' attitudes towards the use of decision aids to inform patients were moderately positive. Shared decision-making appears to have great potential in the rehabilitation setting. Increasing the use of decision aids may contribute to the further implementation of shared decision-making.
Winter, Laraine; Parker, Barbara
2007-10-01
As a substantial body of research attests, the acceptability of life-prolonging treatment (e.g., tube feeding) tends to be greater among people in worse health than among healthier ones. Because a decision for or against a life-prolonging treatment represents a choice between two prospects-life (usually in poor health) and death-we propose a decision model, Prospect Theory, as a theoretical account of this phenomenon. Prospect Theory postulates that pairs of distant prospects are less distinguishable than pairs of closer ones. Thus, to healthy individuals, the prospects of death and life in poor health would both be remote, and therefore, the distinction between them, small. To less healthy individuals, however, the difference between the same pairs of prospects would appear greater, and therefore, life-prolonging treatment may be more acceptable. In a cross-sectional study of 304 community-dwelling people, aged 60 years and over in the Philadelphia area, USA, preferences for 4 life-prolonging treatments in 9 health scenarios were examined in relation to participants' current health, operationalized as number of deficits in physical functioning. As predicted, less healthy people expressed stronger preferences for all life-prolonging treatments compared with healthier ones, with differences greatest in the worse-health scenarios. Preferences also varied by health scenario, with any treatment preferred in the better health scenarios. Treatment preferences did not differ by type of treatment, depressed mood or any demographic characteristic except race, with African-Americans expressing stronger treatment preferences. Implications for advance care planning are discussed.
Selection of first-line therapy in multiple sclerosis using risk-benefit decision analysis.
Bargiela, David; Bianchi, Matthew T; Westover, M Brandon; Chibnik, Lori B; Healy, Brian C; De Jager, Philip L; Xia, Zongqi
2017-02-14
To integrate long-term measures of disease-modifying drug efficacy and risk to guide selection of first-line treatment of multiple sclerosis. We created a Markov decision model to evaluate disability worsening and progressive multifocal leukoencephalopathy (PML) risk in patients receiving natalizumab (NTZ), fingolimod (FGL), or glatiramer acetate (GA) over 30 years. Leveraging publicly available data, we integrated treatment utility, disability worsening, and risk of PML into quality-adjusted life-years (QALYs). We performed sensitivity analyses varying PML risk, mortality and morbidity, and relative risk of disease worsening across clinically relevant ranges. Over the entire reported range of NTZ-associated PML risk, NTZ as first-line therapy is predicted to provide a greater net benefit (15.06 QALYs) than FGL (13.99 QALYs) or GA (12.71 QALYs) treatment over 30 years, after accounting for loss of QALYs due to PML or death (resulting from all causes). NTZ treatment is associated with delayed worsening to an Expanded Disability Status Scale score ≥6.0 vs FGL or GA (22.7, 17.0, and 12.4 years, respectively). Compared to untreated patients, NTZ-treated patients have a greater relative risk of death in the early years of treatment that varies according to PML risk profile. NTZ as a first-line treatment is associated with the highest net benefit across full ranges of PML risk, mortality, and morbidity compared to FGL or GA. Integrated modeling of long-term treatment risks and benefits informs stratified clinical decision-making and can support patient counseling on selection of first-line treatment options. © 2017 American Academy of Neurology.
Conflict and Group Decision-Making: A New Approach.
ERIC Educational Resources Information Center
Dace, Karen L.
In the opinion of decision-making scholars, conflict is a natural component of group decision-making. A new direction for conflict and group decision-making theory and research will help dispel the confusion as to the promotive or disruptive nature of disagreement in group decision-making. Conflict literature is replete with descriptions of the…
Dementia, Decision Making, and Capacity.
Darby, R Ryan; Dickerson, Bradford C
After participating in this activity, learners should be better able to:• Assess the neuropsychological literature on decision making and the medical and legal assessment of capacity in patients with dementia• Identify the limitations of integrating findings from decision-making research into capacity assessments for patients with dementia ABSTRACT: Medical and legal professionals face the challenge of assessing capacity and competency to make medical, legal, and financial decisions in dementia patients with impaired decision making. While such assessments have classically focused on the capacity for complex reasoning and executive functions, research in decision making has revealed that motivational and metacognitive processes are also important. We first briefly review the neuropsychological literature on decision making and on the medical and legal assessment of capacity. Next, we discuss the limitations of integrating findings from decision-making research into capacity assessments, including the group-to-individual inference problem, the unclear role of neuroimaging in capacity assessments, and the lack of capacity measures that integrate important facets of decision making. Finally, we present several case examples where we attempt to demonstrate the potential benefits and important limitations of using decision-making research to aid in capacity determinations.
Legal Standards for Brain Death and Undue Influence in Euthanasia Laws.
Pope, Thaddeus Mason; Okninski, Michaela E
2016-06-01
A major appellate court decision from the United States seriously questions the legal sufficiency of prevailing medical criteria for the determination of death by neurological criteria. There may be a mismatch between legal and medical standards for brain death, requiring the amendment of either or both. In South Australia, a Bill seeks to establish a legal right for a defined category of persons suffering unbearably to request voluntary euthanasia. However, an essential criterion of a voluntary decision is that it is not tainted by undue influence, and this Bill falls short of providing adequate guidance to assess for undue influence.
Rosenthal, Sara A; Nolan, Marie T
2013-07-01
To synthesize the existing qualitative literature about parent ethical decision making in the neonatal intensive care unit (NICU) and to investigate the potential impact of culture on parents' decision making experiences. PubMed, CINAHL plus, and PsychInfo using the search terms parental decision making, culture, race, decision making, and parental decisions. Qualitative research studies investigating decision making for infants in the NICU from the parents' perspective were included. Studies involving older pediatric populations were excluded. Ten primary qualitative research articles were included. The primary author read all manuscripts and tabulated themes related to parents' ethical decision making. Study findings were synthesized using meta-ethnography involving translating concepts of separate studies into one another, exploring contradictions, and organizing these concepts into new theories. Key themes included parent involvement in decision making, parental role, necessity of good information, need for communication, desire for hope and compassion conveyed by providers, decision making satisfaction, and trust in caregiving team. A preliminary theoretical framework of ethical parent decision making was modeled based on the proposed relationships between the themes. Parent preferences for their involvement in decision making, their perceptions of communication with providers, and their relationships with providers are all important factors in the experience of making decisions for their infants. Needs of parents were the same regardless the ethnic or racial diversity of study participants. © 2013 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses.
Coxeter, Peter; Del Mar, Chris B; McGregor, Leanne; Beller, Elaine M; Hoffmann, Tammy C
2015-11-12
Shared decision making is an important component of patient-centred care. It is a set of communication and evidence-based practice skills that elicits patients' expectations, clarifies any misperceptions and discusses the best available evidence for benefits and harms of treatment. Acute respiratory infections (ARIs) are one of the most common reasons for consulting in primary care and obtaining prescriptions for antibiotics. However, antibiotics offer few benefits for ARIs, and their excessive use contributes to antibiotic resistance - an evolving public health crisis. Greater explicit consideration of the benefit-harm trade-off within shared decision making may reduce antibiotic prescribing for ARIs in primary care. To assess whether interventions that aim to facilitate shared decision making increase or reduce antibiotic prescribing for ARIs in primary care. We searched CENTRAL (2014, Issue 11), MEDLINE (1946 to November week 3, 2014), EMBASE (2010 to December 2014) and Web of Science (1985 to December 2014). We searched for other published, unpublished or ongoing trials by searching bibliographies of published articles, personal communication with key trial authors and content experts, and by searching trial registries at the National Institutes of Health and the World Health Organization. Randomised controlled trials (RCTs) (individual level or cluster-randomised), which evaluated the effectiveness of interventions that promote shared decision making (as the focus or a component of the intervention) about antibiotic prescribing for ARIs in primary care. Two review authors independently extracted and collected data. Antibiotic prescribing was the primary outcome, and secondary outcomes included clinically important adverse endpoints (e.g. re-consultations, hospital admissions, mortality) and process measures (e.g. patient satisfaction). We assessed the risk of bias of all included trials and the quality of evidence. We contacted trial authors to obtain missing information where available. We identified 10 published reports of nine original RCTs (one report was a long-term follow-up of the original trial) in over 1100 primary care doctors and around 492,000 patients.The main risk of bias came from participants in most studies knowing whether they had received the intervention or not, and we downgraded the rating of the quality of evidence because of this.We meta-analysed data using a random-effects model on the primary and key secondary outcomes and formally assessed heterogeneity. Remaining outcomes are presented narratively.There is moderate quality evidence that interventions that aim to facilitate shared decision making reduce antibiotic use for ARIs in primary care (immediately after or within six weeks of the consultation), compared with usual care, from 47% to 29%: risk ratio (RR) 0.61, 95% confidence interval (CI) 0.55 to 0.68. Reduction in antibiotic prescribing occurred without an increase in patient-initiated re-consultations (RR 0.87, 95% CI 0.74 to 1.03, moderate quality evidence) or a decrease in patient satisfaction with the consultation (OR 0.86, 95% CI 0.57 to 1.30, low quality evidence). There were insufficient data to assess the effects of the intervention on sustained reduction in antibiotic prescribing, adverse clinical outcomes (such as hospital admission, incidence of pneumonia and mortality), or measures of patient and caregiver involvement in shared decision making (such as satisfaction with the consultation; regret or conflict with the decision made; or treatment compliance following the decision). No studies assessed antibiotic resistance in colonising or infective organisms. Interventions that aim to facilitate shared decision making reduce antibiotic prescribing in primary care in the short term. Effects on longer-term rates of prescribing are uncertain and more evidence is needed to determine how any sustained reduction in antibiotic prescribing affects hospital admission, pneumonia and death.
An approach to and web-based tool for infectious disease outbreak intervention analysis
DOE Office of Scientific and Technical Information (OSTI.GOV)
Daughton, Ashlynn R.; Generous, Nicholas; Priedhorsky, Reid
Infectious diseases are a leading cause of death globally. Decisions surrounding how to control an infectious disease outbreak currently rely on a subjective process involving surveillance and expert opinion. However, there are many situations where neither may be available. Modeling can fill gaps in the decision making process by using available data to provide quantitative estimates of outbreak trajectories. Effective reduction of the spread of infectious diseases can be achieved through collaboration between the modeling community and public health policy community. However, such collaboration is rare, resulting in a lack of models that meet the needs of the public healthmore » community. Here we show a Susceptible-Infectious-Recovered (SIR) model modified to include control measures that allows parameter ranges, rather than parameter point estimates, and includes a web user interface for broad adoption. We apply the model to three diseases, measles, norovirus and influenza, to show the feasibility of its use and describe a research agenda to further promote interactions between decision makers and the modeling community.« less
Shimizu, Kazumi; Udagawa, Daisuke
2011-01-01
Since the discovery of the "framing effect" by Kahneman and Tversky, the sensitivity of the "framing effect" - its appearance and in some cases its disappearance - has long been an object of study. However there is little agreement as to the reasons for this sensitivity. The "ambiguity-ambivalence hypothesis" (Wang, 2008) aims to systematically explain the sensitivity of this effect by paying particular attention to people's cue priority: it states that the framing effect occurs when verbal framing is used to compensate for the absence of higher prioritized decision cues. The main purpose of our study is to examine and develop this hypothesis by examining cue priority given differences in people's "group experience." The main result is that the framing effect is absent when the choice problem is presented in a group context that reflects the actual size of the group that the participant has had experience with. Thus, in order to understand the choices that people make in life and death decisions, it is important to incorporate the decision maker's group experience explicitly into the ambiguity-ambivalence hypothesis.
An approach to and web-based tool for infectious disease outbreak intervention analysis
Daughton, Ashlynn R.; Generous, Nicholas; Priedhorsky, Reid; ...
2017-04-18
Infectious diseases are a leading cause of death globally. Decisions surrounding how to control an infectious disease outbreak currently rely on a subjective process involving surveillance and expert opinion. However, there are many situations where neither may be available. Modeling can fill gaps in the decision making process by using available data to provide quantitative estimates of outbreak trajectories. Effective reduction of the spread of infectious diseases can be achieved through collaboration between the modeling community and public health policy community. However, such collaboration is rare, resulting in a lack of models that meet the needs of the public healthmore » community. Here we show a Susceptible-Infectious-Recovered (SIR) model modified to include control measures that allows parameter ranges, rather than parameter point estimates, and includes a web user interface for broad adoption. We apply the model to three diseases, measles, norovirus and influenza, to show the feasibility of its use and describe a research agenda to further promote interactions between decision makers and the modeling community.« less
Decision making about Pap test use among Korean immigrant women: A qualitative study.
Kim, Kyounghae; Kim, Soohyun; Gallo, Joseph J; Nolan, Marie T; Han, Hae-Ra
2017-08-01
Understanding how individuals make decisions about Pap tests concerning their personal values helps health-care providers offer tailored approaches to guide patients' decision making. Yet research has largely ignored decision making about Pap tests among immigrant women who experience increased risk of cervical cancer. To explore decision making about Pap tests among Korean immigrant women. We conducted a qualitative descriptive study using 32 semi-structured, in-depth interviews with Korean immigrant women residing in a north-eastern metropolitan area. Data were audio-recorded, transcribed verbatim and analysed using inductive coding. Although most women with positive decisions made their own decisions, some women deferred to their providers, and others made decisions in collaboration with their providers and significant others. While women making positive decisions tended to consider both barriers to and facilitators of having Pap tests, women making negative decisions predominantly discussed the barriers to having Pap tests, such as modesty and differences between the South Korean and US health-care systems. The women's reflections on their decisions differed regarding their Pap test decisions. Women's desired roles in the decision-making process and reflection on their decision outcome appeared to vary, although most participants with positive decisions made their own decisions and were satisfied with their decisions. Future research should conduct longitudinal, quantitative studies to test our findings regarding decision-making processes and outcomes about Pap tests. The findings should be incorporated into cervical cancer screening practices to fulfil the unmet needs of immigrant women in patient-provider communication and to facilitate women's decision making about Pap tests. © 2016 The Authors. Health Expectations published by John Wiley & Sons Ltd.
Smith-Merry, Jennifer; Caple, Andrew
2014-03-01
Adverse events in mental health care occur frequently and cause significant distress for those who experience them, derailing treatment and sometimes leading to death. These events are clustered around particular aspects of care and treatment and are therefore avoidable if practices in these areas are strengthened. The research reported in this article takes as its starting point coronial recommendations made in relation to mental health. We report on those points and processes in treatment and discharge where coronial recommendations are most frequently made. We then examine the legislative requirements around these points and processes in three Australian States. We find that the key areas that need to be strengthened to avoid adverse events are assessment processes, communication and information transfer, documentation, planning and training. We make recommendations for improvements in these key areas.
Dunn, Sandra I; Cragg, Betty; Graham, Ian D; Medves, Jennifer; Gaboury, Isabelle
2018-05-01
Shared decision-making provides an opportunity for the knowledge and skills of care providers to synergistically influence patient care. Little is known about interprofessional shared decision-making processes in critical care settings. The aim of this study was to explore interprofessional team members' perspectives about the nature of interprofessional shared decision-making in a neonatal intensive care unit (NICU) and to determine if there are any differences in perspectives across professional groups. An exploratory qualitative approach was used consisting of semi-structured interviews with 22 members of an interprofessional team working in a tertiary care NICU in Canada. Participants identified four key roles involved in interprofessional shared decision-making: leader, clinical experts, parents, and synthesizer. Participants perceived that interprofessional shared decision-making happens through collaboration, sharing, and weighing the options, the evidence and the credibility of opinions put forward. The process of interprofessional shared decision-making leads to a well-informed decision and participants feeling valued. Findings from this study identified key concepts of interprofessional shared decision-making, increased awareness of differing professional perspectives about this process of shared decision-making, and clarified understanding of the different roles involved in the decision-making process in an NICU.
Murshid, N S; Ely, G E
2016-10-01
Our objective was to assess whether microfinance participation affords greater contraceptive decision-making power to women. Population based secondary data analysis. In this cross-sectional study using nationally representative data from the Bangladesh Demographic and Health Survey 2011 we conducted multinomial logistic regression to estimate the odds of contraceptive decision-making by respondents and their husbands based on microfinance participation. Microfinance participation was measured as a dichotomous variable and contraceptive decision-making was conceptualized based on who made decisions about contraceptive use: respondents only; their partners or husbands only; or both. The odds of decision-making by the respondent, with the reference case being joint decision-making, were higher for microfinance participants, but they were not significant. The odds of decision-making by the husband, with the reference case again being joint decision-making, were significantly lower among men who were partnered with women who participated in microfinance (RRR = 0.70, P < 0.01). Microfinance participation by women allowed men to share decision-making power with their wives that resulted in higher odds of joint decision-making. Copyright © 2016 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
The Assisted Decision-Making (Capacity) Bill 2013: content, commentary, controversy.
Kelly, B D
2015-03-01
Ireland's Assisted Decision-Making (Capacity) Bill (2013) aims to reform the law relating to persons who require assistance exercising their decision-making capacity. When finalised, the Bill will replace Ireland's outdated Ward of Court system which has an all-or-nothing approach to capacity; does not adequately define capacity; is poorly responsive to change; makes unwieldy provision for appointing decision-makers; and has insufficient provision for review. To explore the content and implications of the Assisted Decision-Making (Capacity) Bill. Review of the content of the Assisted Decision-Making (Capacity) Bill and related literature. The new Bill includes a presumption of capacity and defines lack of capacity. All interventions must minimise restriction of rights and freedom, and have due regard for "dignity, bodily integrity, privacy and autonomy". The Bill proposes legal frameworks for "assisted decision-making" (where an individual voluntarily appoints someone to assist with specific decisions relating to personal welfare or property and affairs, by, among other measures, assisting the individual to communicate his or her "will and preferences"); "co-decision-making" (where the Circuit Court declares the individual's capacity is reduced but he or she can make specific decisions with a co-decision-maker to share authority); "decision-making representatives" (substitute decision-making); "enduring power of attorney"; and "informal decision-making on personal welfare matters" (without apparent oversight). These measures, if implemented, will shift Ireland's capacity laws away from an approach based on "best interests" to one based on "will and preferences", and increase compliance with the United Nations' Convention on the Rights of Persons with Disabilities.
Considering Risk and Resilience in Decision-Making
NASA Technical Reports Server (NTRS)
Torres-Pomales, Wilfredo
2015-01-01
This paper examines the concepts of decision-making, risk analysis, uncertainty and resilience analysis. The relation between risk, vulnerability, and resilience is analyzed. The paper describes how complexity, uncertainty, and ambiguity are the most critical factors in the definition of the approach and criteria for decision-making. Uncertainty in its various forms is what limits our ability to offer definitive answers to questions about the outcomes of alternatives in a decision-making process. It is shown that, although resilience-informed decision-making would seem fundamentally different from risk-informed decision-making, this is not the case as resilience-analysis can be easily incorporated within existing analytic-deliberative decision-making frameworks.
Xiao, Lin; Bechara, Antoine; Palmer, Paula H.; Trinidad, Dennis R.; Wei, Yonglan; Jia, Yong; Johnson, C. Anderson
2010-01-01
The goal of this study was to investigate how parents’ engagement of their child in everyday decision-making influenced their adolescent’s development on two neuropsychological functions, namely, affective decision-making and working memory, and its effect on adolescent binge-drinking behavior. We conducted a longitudinal study of 192 Chinese adolescents. In 10th grade, the adolescents were tested for their affective decision-making ability using the Iowa Gambling Task (IGT) and working memory capacity using the Self-ordered Pointing Test (SOPT). Questionnaires were used to assess perceived parent-child engagement in decision-making, academic performance and drinking behavior. At one-year follow-up, the same neuropsychological tasks and questionnaires were repeated. Results indicate that working memory and academic performance were uninfluenced by parent-child engagement in decision-making. However, compared to adolescents whose parents made solitary decisions for them, adolescents engaged in everyday decision-making showed significant improvement on affective decision capacity and significantly less binge-drinking one year later. These findings suggest that parental engagement of children in everyday decision-making might foster the development of neurocognitive functioning relative to affective decision-making and reduce adolescent substance use behaviors. PMID:21804682
Sepucha, Karen R; Simmons, Leigh H; Barry, Michael J; Edgman-Levitan, Susan; Licurse, Adam M; Chaguturu, Sreekanth K
2016-04-01
Shared decision making is a core component of population health strategies aimed at improving patient engagement. Massachusetts General Hospital's integration of shared decision making into practice has focused on the following three elements: developing a culture receptive to, and health care providers skilled in, shared decision making conversations; using patient decision aids to help inform and engage patients; and providing infrastructure and resources to support the implementation of shared decision making in practice. In the period 2005-15, more than 900 clinicians and other staff members were trained in shared decision making, and more than 28,000 orders for one of about forty patient decision aids were placed to support informed patient-centered decisions. We profile two different implementation initiatives that increased the use of patient decision aids at the hospital's eighteen adult primary care practices, and we summarize key elements of the shared decision making program. Project HOPE—The People-to-People Health Foundation, Inc.
Role of affect in decision making.
Bandyopadhyay, Debarati; Pammi, V S Chandrasekhar; Srinivasan, Narayanan
2013-01-01
Emotion plays a major role in influencing our everyday cognitive and behavioral functions, including decision making. We introduce different ways in which emotions are characterized in terms of the way they influence or elicited by decision making. This chapter discusses different theories that have been proposed to explain the role of emotions in judgment and decision making. We also discuss incidental emotional influences, both long-duration influences like mood and short-duration influences by emotional context present prior to or during decision making. We present and discuss results from a study with emotional pictures presented prior to decision making and how that influences both decision processes and postdecision experience as a function of uncertainty. We conclude with a summary of the work on emotions and decision making in the context of decision-making theories and our work on incidental emotions. Copyright © 2013 Elsevier B.V. All rights reserved.
A decision-making model based on a spiking neural circuit and synaptic plasticity.
Wei, Hui; Bu, Yijie; Dai, Dawei
2017-10-01
To adapt to the environment and survive, most animals can control their behaviors by making decisions. The process of decision-making and responding according to cues in the environment is stable, sustainable, and learnable. Understanding how behaviors are regulated by neural circuits and the encoding and decoding mechanisms from stimuli to responses are important goals in neuroscience. From results observed in Drosophila experiments, the underlying decision-making process is discussed, and a neural circuit that implements a two-choice decision-making model is proposed to explain and reproduce the observations. Compared with previous two-choice decision making models, our model uses synaptic plasticity to explain changes in decision output given the same environment. Moreover, biological meanings of parameters of our decision-making model are discussed. In this paper, we explain at the micro-level (i.e., neurons and synapses) how observable decision-making behavior at the macro-level is acquired and achieved.
Neuroanatomical basis for recognition primed decision making.
Hudson, Darren
2013-01-01
Effective decision making under time constraints is often overlooked in medical decision making. The recognition primed decision making (RPDM) model was developed by Gary Klein based on previous recognized situations to develop a satisfactory solution to the current problem. Bayes Theorem is the most popular decision making model in medicine but is limited by the need for adequate time to consider all probabilities. Unlike other decision making models, there is a potential neurobiological basis for RPDM. This model has significant implication for health informatics and medical education.
ERIC Educational Resources Information Center
Watson, Joanne; Wilson, Erin; Hagiliassis, Nick
2017-01-01
Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.…
Nurse manager cognitive decision-making amidst stress and work complexity.
Shirey, Maria R; Ebright, Patricia R; McDaniel, Anna M
2013-01-01
The present study provides insight into nurse manager cognitive decision-making amidst stress and work complexity. Little is known about nurse manager decision-making amidst stress and work complexity. Because nurse manager decisions have the potential to impact patient care quality and safety, understanding their decision-making processes is useful for designing supportive interventions. This qualitative descriptive study interviewed 21 nurse managers from three hospitals to answer the research question: What decision-making processes do nurse managers utilize to address stressful situations in their nurse manager role? Face-to-face interviews incorporating components of the Critical Decision Method illuminated expert-novice practice differences. Content analysis identified one major theme and three sub-themes. The present study produced a cognitive model that guides nurse manager decision-making related to stressful situations. Experience in the role, organizational context and situation factors influenced nurse manager cognitive decision-making processes. Study findings suggest that chronic exposure to stress and work complexity negatively affects nurse manager health and their decision-making processes potentially threatening individual, patient and organizational outcomes. Cognitive decision-making varies based on nurse manager experience and these differences have coaching and mentoring implications. This present study contributes a current understanding of nurse manager decision-making amidst stress and work complexity. © 2012 Blackwell Publishing Ltd.
Berger-Höger, Birte; Liethmann, Katrin; Mühlhauser, Ingrid; Haastert, Burkhard; Steckelberg, Anke
2015-10-12
Women with breast cancer want to participate in treatment decision-making. Guidelines have confirmed the right of informed shared decision-making. However, previous research has shown that the implementation of informed shared decision-making is suboptimal for reasons of limited resources of physicians, power imbalances between patients and physicians and missing evidence-based patient information. We developed an informed shared decision-making program for women with primary ductal carcinoma in situ (DCIS). The program provides decision coaching for women by specialized nurses and aims at supporting involvement in decision-making and informed choices. In this trial, the informed shared decision-making program will be evaluated in breast care centers. A cluster randomized controlled trial will be conducted to compare the informed shared decision-making program with standard care. The program comprises an evidence-based patient decision aid and training of physicians (2 hours) and specialized breast care and oncology nurses (4 days) in informed shared decision-making. Sixteen certified breast care centers will be included, with 192 women with primary DCIS being recruited. Primary outcome is the extent of patients' involvement in shared decision-making as assessed by the MAPPIN-Odyad (Multifocal approach to the 'sharing' in shared decision-making: observer instrument dyad). Secondary endpoints include the sub-measures of the MAPPIN-inventory (MAPPIN-Onurse, MAPPIN-Ophysician, MAPPIN-Opatient, MAPPIN-Qnurse, MAPPIN-Qpatient and MAPPIN-Qphysician), informed choice, decisional conflict and the duration of encounters. It is expected that decision coaching and the provision of evidence-based patient decision aids will increase patients' involvement in decision-making with informed choices and reduce decisional conflicts and duration of physician encounters. Furthermore, an accompanying process evaluation will be conducted. To our knowledge, this is the first study investigating the implementation of decision coaches in German breast care centers. Current Controlled Trials ISRCTN46305518 , date of registration: 5 June 2015.
Complexity science and participation in decision making among Taiwanese nurses.
Liu, Yi
2008-04-01
The perspective of interconnection in complexity science is used to examine the concept of participation in decision making among Taiwanese nurses in the context of Chinese communication culture. Participation in decision making among nurses has been widely discussed and tested in the Western healthcare systems. Many studies have shown that participation in decision making relates to nurses' autonomy, job satisfaction and quality of care. However, participation in decision making has not been fully discussed in Taiwan's nursing community. In a different cultural environment, participation in decision making may have different effects. The concept of participation in decision making is analysed in three facets of Chinese communication culture: (1) hierarchical social relationship; (2) harmony maintenance; and (3) insider effects. Key issues Taiwanese nurses might establish different levels of participation and need to use different strategies to enhance participation in decision making for desired outcomes. While applying participation in decision making in a different context, it is very important to consider the social and cultural differences. Two implications are made. First, nursing leaders/managers who are working with a multicultural team should be aware of the cultural difference in the pattern of interaction in the process of participation in decision making. Second, leaders/managers should be creative and try to apply different strategies to encourage staff's participation in decision making.
A review of clinical decision making: models and current research.
Banning, Maggi
2008-01-01
The aim of this paper was to review the current literature clinical decision-making models and the educational application of models to clinical practice. This was achieved by exploring the function and related research of the three available models of clinical decision making: information-processing model, the intuitive-humanist model and the clinical decision-making model. Clinical decision making is a unique process that involves the interplay between knowledge of pre-existing pathological conditions, explicit patient information, nursing care and experiential learning. Historically, two models of clinical decision making are recognized from the literature; the information-processing model and the intuitive-humanist model. The usefulness and application of both models has been examined in relation the provision of nursing care and care related outcomes. More recently a third model of clinical decision making has been proposed. This new multidimensional model contains elements of the information-processing model but also examines patient specific elements that are necessary for cue and pattern recognition. Literature review. Evaluation of the literature generated from MEDLINE, CINAHL, OVID, PUBMED and EBESCO systems and the Internet from 1980 to November 2005. The characteristics of the three models of decision making were identified and the related research discussed. Three approaches to clinical decision making were identified, each having its own attributes and uses. The most recent addition to the clinical decision making is a theoretical, multidimensional model which was developed through an evaluation of current literature and the assessment of a limited number of research studies that focused on the clinical decision-making skills of inexperienced nurses in pseudoclinical settings. The components of this model and the relative merits to clinical practice are discussed. It is proposed that clinical decision making improves as the nurse gains experience of nursing patients within a specific speciality and with experience, nurses gain a sense of saliency in relation to decision making. Experienced nurses may use all three forms of clinical decision making both independently and concurrently to solve nursing-related problems. It is suggested that O'Neill's clinical decision-making model could be tested by educators and experienced nurses to assess the efficacy of this hybrid approach to decision making.
Data-Based Decision Making in Education: Challenges and Opportunities
ERIC Educational Resources Information Center
Schildkamp, Kim, Ed.; Lai, Mei Kuin, Ed.; Earl, Lorna, Ed.
2013-01-01
In a context where schools are held more and more accountable for the education they provide, data-based decision making has become increasingly important. This book brings together scholars from several countries to examine data-based decision making. Data-based decision making in this book refers to making decisions based on a broad range of…
ERIC Educational Resources Information Center
Ballantine, R. Malcolm
Decision Support Systems (DSSs) are computer-based decision aids to use when making decisions which are partially amenable to rational decision-making procedures but contain elements where intuitive judgment is an essential component. In such situations, DSSs are used to improve the quality of decision-making. The DSS approach is based on Simon's…
Chong, Wei Wen; Aslani, Parisa; Chen, Timothy F
2013-05-01
Shared decision-making is an essential element of patient-centered care in mental health. Since mental health services involve healthcare providers from different professions, a multiple perspective to shared decision-making may be valuable. The objective of this study was to explore the perceptions of different healthcare professionals on shared decision-making and current interprofessional collaboration in mental healthcare. Semi-structured interviews were conducted with 31 healthcare providers from a range of professions, which included medical practitioners (psychiatrists, general practitioners), pharmacists, nurses, occupational therapists, psychologists and social workers. Findings indicated that healthcare providers supported the notion of shared decision-making in mental health, but felt that it should be condition dependent. Medical practitioners advocated a more active participation from consumers in treatment decision-making; whereas other providers (e.g. pharmacists, occupational therapists) focused more toward acknowledging consumers' needs in decisions, perceiving themselves to be in an advisory role in supporting consumers' decision-making. Although healthcare providers acknowledged the importance of interprofessional collaboration, only a minority discussed it within the context of shared decision-making. In conclusion, healthcare providers appeared to have differing perceptions on the level of consumer involvement in shared decision-making. Interprofessional roles to facilitate shared decision-making in mental health need to be acknowledged, understood and strengthened, before an interprofessional approach to shared decision-making in mental health can be effectively implemented.
Graphic Representations as Tools for Decision Making.
ERIC Educational Resources Information Center
Howard, Judith
2001-01-01
Focuses on the use of graphic representations to enable students to improve their decision making skills in the social studies. Explores three visual aids used in assisting students with decision making: (1) the force field; (2) the decision tree; and (3) the decision making grid. (CMK)
Li, Nancy; Jayasinghe, Yasmin; Kemertzis, Matthew A; Moore, Paddy; Peate, Michelle
2017-06-01
Decisions surrounding fertility preservation (FP) in children, adolescents, and adults can be difficult due to the distress of a cancer diagnosis, time constraints for decision-making, and lack of efficacy data. This review examines the decision-making process of oncology patients and their parents (if patients are in the pediatric or adolescent population) to better understand experiences of decisional conflict and regret. Two electronic databases, Embase and Pubmed, were searched using the terms (Decision-making OR Conflict (Psychology) OR Decision regret) AND (Freezing OR Oocyte OR Ovarian tissue OR Semen preservation OR Fertility preservation OR Cryopreservation) AND (Neoplasms OR Cancer OR Chemotherapy OR Drug therapy OR Radiotherapy). Medical Subject Heading terms were utilized where possible. Included articles discussed FP decision-making from the patient's perspective. Thirty-five articles discussing FP decision-making were included (24 in the adult population, 11 in the pediatric and adolescent population). Key themes from these articles included the following: factors considered in FP decision-making, decision-making in established procedures and experimental procedures, decisional conflict and regret, the perceived importance of information, adolescent involvement in decision-making, and ethical considerations in the pediatric population. Unique ethical issues arise in the pediatric and adolescent population. Considering that the decision to pursue FP is known to be difficult in the adult population, decisional conflict and regret may be greater for parents who are making the decision for their child.
Dettlaff, Alan J; Christopher Graham, J; Holzman, Jesse; Baumann, Donald J; Fluke, John D
2015-11-01
When children come to the attention of the child welfare system, they become involved in a decision-making process in which decisions are made that have a significant effect on their future and well-being. The decision to remove children from their families is particularly complex; yet surprisingly little is understood about this decision-making process. This paper presents the results of a study to develop an instrument to explore, at the caseworker level, the context of the removal decision, with the objective of understanding the influence of the individual and organizational factors on this decision, drawing from the Decision Making Ecology as the underlying rationale for obtaining the measures. The instrument was based on the development of decision-making scales used in prior decision-making studies and administered to child protection caseworkers in several states. Analyses included reliability analyses, principal components analyses, and inter-correlations among the resulting scales. For one scale regarding removal decisions, a principal components analysis resulted in the extraction of two components, jointly identified as caseworkers' decision-making orientation, described as (1) an internal reference to decision-making and (2) an external reference to decision-making. Reliability analyses demonstrated acceptable to high internal consistency for 9 of the 11 scales. Full details of the reliability analyses, principal components analyses, and inter-correlations among the seven scales are discussed, along with implications for practice and the utility of this instrument to support the understanding of decision-making in child welfare. Copyright © 2015 Elsevier Ltd. All rights reserved.
National Evidence on the Use of Shared Decision Making in Prostate-Specific Antigen Screening
Han, Paul K. J.; Kobrin, Sarah; Breen, Nancy; Joseph, Djenaba A.; Li, Jun; Frosch, Dominick L.; Klabunde, Carrie N.
2013-01-01
PURPOSE Recent clinical practice guidelines on prostate cancer screening using the prostate-specific antigen (PSA) test (PSA screening) have recommended that clinicians practice shared decision making—a process involving clinician-patient discussion of the pros, cons, and uncertainties of screening. We undertook a study to determine the prevalence of shared decision making in both PSA screening and nonscreening, as well as patient characteristics associated with shared decision making. METHODS A nationally representative sample of 3,427 men aged 50 to 74 years participating in the 2010 National Health Interview Survey responded to questions on the extent of shared decision making (past physician-patient discussion of advantages, disadvantages, and scientific uncertainty associated with PSA screening), PSA screening intensity (tests in past 5 years), and sociodemographic and health-related characteristics. RESULTS Nearly two-thirds (64.3%) of men reported no past physician-patient discussion of advantages, disadvantages, or scientific uncertainty (no shared decision making); 27.8% reported discussion of 1 to 2 elements only (partial shared decision making); 8.0% reported discussion of all 3 elements (full shared decision making). Nearly one-half (44.2%) reported no PSA screening, 27.8% reported low-intensity (less-than-annual) screening, and 25.1% reported high-intensity (nearly annual) screening. Absence of shared decision making was more prevalent in men who were not screened; 88% (95% CI, 86.2%–90.1%) of nonscreened men reported no shared decision making compared with 39% (95% CI, 35.0%–43.3%) of men undergoing high-intensity screening. Extent of shared decision making was associated with black race, Hispanic ethnicity, higher education, health insurance, and physician recommendation. Screening intensity was associated with older age, higher education, usual source of medical care, and physician recommendation, as well as with partial vs no or full shared decision making. CONCLUSIONS Most US men report little shared decision making in PSA screening, and the lack of shared decision making is more prevalent in nonscreened than in screened men. Screening intensity is greatest with partial shared decision making, and different elements of shared decision making are associated with distinct patient characteristics. Shared decision making needs to be improved in decisions for and against PSA screening. PMID:23835816
Germerott, Tanja; Todt, Melanie; Bode-Jänisch, Stefanie; Albrecht, Knut; Breitmeier, Dirk
2012-01-01
The external post-mortem examination, its deficient quality and possible causes have been the subject of numerous political and professional discussions. The external post-mortem examination is the basis for the decision whether further criminal investigations are required to clarify the cause of death. It is thus an essential instrument to ensure legal certainty. Before cremation, a second external post-mortem examination is performed by a public medical officer to make sure that errors of the first post-mortem are corrected. In the present study, cases were retrospectively analyzed in which a forensic autopsy had been ordered on the basis of the results of the post-mortem examination performed before cremation. The entries on the death certificate regarding the manner and cause of death were compared with the autopsy results. Between 1998 and 2007, 387 autopsies were ordered after external examination before cremation. In 55 cases (14.2%), the autopsy revealed a non-natural death, although a natural death had been attested on the death certificate. In descending order, a wrong manner of death was attested by clinicians, general practitioners and emergency physicians. With regard to the place where the first external post-mortem had been performed the lowest error rate was seen in nursing homes. Concerning the cause of death, discrepancies between the first post-mortem and autopsy were found in 59.4% of the cases. In this respect, general practitioners and clinicians were ranking first, whereas in nursing homes the cause of death was wrongly assessed in over 70% of cases. At present, the medical post-mortem does not meet the required quality standards, especially with regard to legal certainty. Determination of the cause of death on the basis of the external post-mortem examination is a challenging task even for the experienced medical examiner. As to the categorization of the manner of death it has to be stated that non-natural deaths are often not recognized or that the possibility to certify a death as unclear is not sufficiently used. As a result, it seems important to demand intensive, qualified, additional training in external post-mortem examinations for physicians.
Shared decision making in chronic care in the context of evidence based practice in nursing.
Friesen-Storms, Jolanda H H M; Bours, Gerrie J J W; van der Weijden, Trudy; Beurskens, Anna J H M
2015-01-01
In the decision-making environment of evidence-based practice, the following three sources of information must be integrated: research evidence of the intervention, clinical expertise, and the patient's values. In reality, evidence-based practice usually focuses on research evidence (which may be translated into clinical practice guidelines) and clinical expertise without considering the individual patient's values. The shared decision-making model seems to be helpful in the integration of the individual patient's values in evidence-based practice. We aim to discuss the relevance of shared decision making in chronic care and to suggest how it can be integrated with evidence-based practice in nursing. We start by describing the following three possible approaches to guide the decision-making process: the paternalistic approach, the informed approach, and the shared decision-making approach. Implementation of shared decision making has gained considerable interest in cases lacking a strong best-treatment recommendation, and when the available treatment options are equivalent to some extent. We discuss that in chronic care it is important to always invite the patient to participate in the decision-making process. We delineate the following six attributes of health care interventions in chronic care that influence the degree of shared decision making: the level of research evidence, the number of available intervention options, the burden of side effects, the impact on lifestyle, the patient group values, and the impact on resources. Furthermore, the patient's willingness to participate in shared decision making, the clinical expertise of the nurse, and the context in which the decision making takes place affect the shared decision-making process. A knowledgeable and skilled nurse with a positive attitude towards shared decision making—integrated with evidence-based practice—can facilitate the shared decision-making process. We conclude that nurses as well as other health care professionals in chronic care should integrate shared decision making with evidence-based practice to deliver patient-centred care. Copyright © 2014 Elsevier Ltd. All rights reserved.
Shimamoto, Kyoko; Gipson, Jessica D
2015-07-24
Maternal mortality remains unacceptably high in sub-Saharan Africa with 179,000 deaths occurring each year, accounting for 2-thirds of maternal deaths worldwide. Progress in reducing maternal deaths and increasing Skilled Birth Attendant (SBA) use at childbirth has stagnated in Africa. Although several studies demonstrate the important influences of women's status and empowerment on SBA use, this evidence is limited, particularly in Africa. Furthermore, few studies empirically test the operationalization of women's empowerment and incorporate multidimensional measures to represent the potentially disparate influence of women's status and empowerment on SBA use across settings. This study examined the relationship of women's status and empowerment with SBA use in two African countries--Senegal and Tanzania--using the 2010 Demographic and Health Surveys (weighted births n = 10,688 in SN; 6748 in TZ). Factor analysis was first conducted to identify the structure and multiple dimensions of empowerment. Then, a multivariate regression analysis was conducted to examine associations between these empowerment dimensions and SBA use. Overall, women's status and empowerment were positively related to SBA use. Some sociodemographic characteristics showed similar effects across countries (e.g., age, wealth, residence, marital relationship, parity); however, women's status and empowerment influence SBA use differently by setting. Namely, women's education directly and positively influenced SBA use in Tanzania, but not in Senegal. Further, each of the dimensions of empowerment influenced SBA use in disparate ways. In Tanzania women's higher household decision-making power and employment were related to SBA use, while in Senegal more progressive perceptions of gender norms and older age at first marriage were related to SBA use. This study provides evidence of the disparate influences of women's status and empowerment on SBA use across settings. Results indicate that efforts to increase SBA use and to reduce maternal mortality through the improvement of women's status and empowerment should focus both on improving girls' education and delaying marriage, as well as transforming gender norms and decision-making power. However, given the multi-dimensional and contextual nature of women's status and empowerment, it is critical to identify key drivers to increase SBA use in a given setting for contextually tailored policy and programming.
Risk-taking and decision-making in youth: relationships to addiction vulnerability.
Balogh, Kornelia N; Mayes, Linda C; Potenza, Marc N
2013-03-01
Decision-making and risk-taking behavior undergo developmental changes during adolescence. Disadvantageous decision-making and increased risk-taking may lead to problematic behaviors such as substance use and abuse, pathological gambling and excessive internet use. Based on MEDLINE searches, this article reviews the literature on decision-making and risk-taking and their relationship to addiction vulnerability in youth. Decision-making and risk-taking behaviors involve brain areas that undergoing developmental changes during puberty and young adulthood. Individual differences and peer pressure also relate importantly to decision-making and risk-taking. Brain-based changes in emotional, motivational and cognitive processing may underlie risk-taking and decision-making propensities in adolescence, making this period a time of heightened vulnerability for engagement in additive behaviors.
López, Mónica E.; Kaplan, Celia P.; Nápoles, Anna M.; Hwang, E. Shelly; Livaudais, Jennifer C.; Karliner, Leah S.
2013-01-01
Objective To examine differences in treatment decision-making participation, satisfaction, and regret among Latinas and non-Latina whites with DCIS. Methods Survey of Latina and non-Latina white women diagnosed with DCIS. We assessed women’s preferences for involvement in decision-making, primary treatment decision maker, and participatory decision-making. We examined primary outcomes of satisfaction with treatment decision-making and treatment regret by ethnic-language group. Results Among 745 participants (349 Latinas, 396 white) Spanish-speaking Latinas (SSL) had the highest mean preference for involvement in decision-making score and the lowest mean participatory decision-making score and were more likely to defer their final treatment decision to their physicians than English-speaking Latinas or whites (26%, 13%, 18%, p<.05). SSLs reported lower satisfaction with treatment decision-making (OR 0.4; CI 95%, 0.2-0.8) and expressed more regret than whites (OR 6.2; CI 95%, 3.0-12.4). More participatory decision-making increased the odds of satisfaction (OR 1.5; CI 95%, 1.3-1.8) and decreased the odds of treatment regret (OR 0.8; CI 95%, 0.7-1.0), independent of ethnicity-language. Conclusion Language barriers impede the establishment of decision-making partnerships between Latinas and their physicians, and result in less satisfaction with the decision-making process and more treatment regret. Practice Implications Use of professional interpreters may address communication-related disparities for these women. PMID:24207116
López, Mónica E; Kaplan, Celia P; Nápoles, Anna M; Hwang, E Shelley; Livaudais, Jennifer C; Karliner, Leah S
2014-01-01
To examine differences in treatment decision-making participation, satisfaction, and regret among Latinas and non-Latina whites with DCIS. Survey of Latina and non-Latina white women diagnosed with DCIS. We assessed women's preferences for involvement in decision-making, primary treatment decision maker, and participatory decision-making. We examined primary outcomes of satisfaction with treatment decision-making and treatment regret by ethnic-language group. Among 745 participants (349 Latinas, 396 white) Spanish-speaking Latinas (SSL) had the highest mean preference for involvement in decision-making score and the lowest mean participatory decision-making score and were more likely to defer their final treatment decision to their physicians than English-speaking Latinas or whites (26%, 13%, 18%, p<0.05). SSLs reported lower satisfaction with treatment decision-making (OR 0.4; CI 95%, 0.2-0.8) and expressed more regret than whites (OR 6.2; CI 95%, 3.0-12.4). More participatory decision-making increased the odds of satisfaction (OR 1.5; CI 95%, 1.3-1.8) and decreased the odds of treatment regret (OR 0.8; CI 95%, 0.7-1.0), independent of ethnicity-language. Language barriers impede the establishment of decision-making partnerships between Latinas and their physicians, and result in less satisfaction with the decision-making process and more treatment regret. Use of professional interpreters may address communication-related disparities for these women. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.
Narrative Interest Standard: A Novel Approach to Surrogate Decision-Making for People With Dementia.
Wilkins, James M
2017-06-17
Dementia is a common neurodegenerative process that can significantly impair decision-making capacity as the disease progresses. When a person is found to lack capacity to make a decision, a surrogate decision-maker is generally sought to aid in decision-making. Typical bases for surrogate decision-making include the substituted judgment standard and the best interest standard. Given the heterogeneous and progressive course of dementia, however, these standards for surrogate decision-making are often insufficient in providing guidance for the decision-making for a person with dementia, escalating the likelihood of conflict in these decisions. In this article, the narrative interest standard is presented as a novel and more appropriate approach to surrogate decision-making for people with dementia. Through case presentation and ethical analysis, the standard mechanisms for surrogate decision-making for people with dementia are reviewed and critiqued. The narrative interest standard is then introduced and discussed as a dementia-specific model for surrogate decision-making. Through incorporation of elements of a best interest standard in focusing on the current benefit-burden ratio and elements of narrative to provide context, history, and flexibility for values and preferences that may change over time, the narrative interest standard allows for elaboration of an enriched context for surrogate decision-making for people with dementia. More importantly, however, a narrative approach encourages the direct contribution from people with dementia in authoring the story of what matters to them in their lives.
Quigley, Matthew; Dillon, Michael P; Fatone, Stefania
2018-02-01
Shared decision making is a consultative process designed to encourage patient participation in decision making by providing accurate information about the treatment options and supporting deliberation with the clinicians about treatment options. The process can be supported by resources such as decision aids and discussion guides designed to inform and facilitate often difficult conversations. As this process increases in use, there is opportunity to raise awareness of shared decision making and the international standards used to guide the development of quality resources for use in areas of prosthetic/orthotic care. To describe the process used to develop shared decision-making resources, using an illustrative example focused on decisions about the level of dysvascular partial foot amputation or transtibial amputation. Development process: The International Patient Decision Aid Standards were used to guide the development of the decision aid and discussion guide focused on decisions about the level of dysvascular partial foot amputation or transtibial amputation. Examples from these shared decision-making resources help illuminate the stages of development including scoping and design, research synthesis, iterative development of a prototype, and preliminary testing with patients and clinicians not involved in the development process. Lessons learnt through the process, such as using the International Patient Decision Aid Standards checklist and development guidelines, may help inform others wanting to develop similar shared decision-making resources given the applicability of shared decision making to many areas of prosthetic-/orthotic-related practice. Clinical relevance Shared decision making is a process designed to guide conversations that help patients make an informed decision about their healthcare. Raising awareness of shared decision making and the international standards for development of high-quality decision aids and discussion guides is important as the approach is introduced in prosthetic-/orthotic-related practice.
The involvement of the striatum in decision making
Goulet-Kennedy, Julie; Labbe, Sara; Fecteau, Shirley
2016-01-01
Decision making has been extensively studied in the context of economics and from a group perspective, but still little is known on individual decision making. Here we discuss the different cognitive processes involved in decision making and its associated neural substrates. The putative conductors in decision making appear to be the prefrontal cortex and the striatum. Impaired decision-making skills in various clinical populations have been associated with activity in the prefrontal cortex and in the striatum. We highlight the importance of strengthening the degree of integration of both cognitive and neural substrates in order to further our understanding of decision-making skills. In terms of cognitive paradigms, there is a need to improve the ecological value of experimental tasks that assess decision making in various contexts and with rewards; this would help translate laboratory learnings into real-life benefits. In terms of neural substrates, the use of neuroimaging techniques helps characterize the neural networks associated with decision making; more recently, ways to modulate brain activity, such as in the prefrontal cortex and connected regions (eg, striatum), with noninvasive brain stimulation have also shed light on the neural and cognitive substrates of decision making. Together, these cognitive and neural approaches might be useful for patients with impaired decision-making skills. The drive behind this line of work is that decision-making abilities underlie important aspects of wellness, health, security, and financial and social choices in our daily lives. PMID:27069380
Han, S Duke; Boyle, Patricia A; James, Bryan D; Yu, Lei; Bennett, David A
2015-04-01
To test the hypothesis that mild cognitive impairment (MCI) is associated with poorer financial and healthcare decision-making. Community-based epidemiological cohort study. Communities throughout northeastern Illinois. Older persons without dementia from the Rush Memory and Aging Project (N = 730). All participants underwent a detailed clinical evaluation and decision-making assessment using a measure that closely approximates materials used in real-world financial and healthcare settings. This allowed for measurement of total decision-making and financial and healthcare decision-making. Regression models were used to examine whether MCI was associated with a lower level of decision-making. In subsequent analyses, the relationship between specific cognitive systems (episodic memory, semantic memory, working memory, perceptual speed, visuospatial ability) and decision-making was explored in participants with MCI. MCI was associated with lower total, financial, and healthcare decision-making scores after accounting for the effects of age, education, and sex. The effect of MCI on total decision-making was equivalent to the effect of more than 10 additional years of age. Additional models showed that, when considering multiple cognitive systems, perceptual speed accounted for the most variance in decision-making in participants with MCI. Persons with MCI may have poorer financial and healthcare decision-making in real-world situations, and perceptual speed may be an important contributor to poorer decision-making in persons with MCI. © 2015, Copyright the Authors Journal compilation © 2015, The American Geriatrics Society.
Understanding shared decision making in pediatric otolaryngology.
Chorney, Jill; Haworth, Rebecca; Graham, M Elise; Ritchie, Krista; Curran, Janet A; Hong, Paul
2015-05-01
The aim of this study was to describe the level of decisional conflict experienced by parents considering surgery for their children and to determine if decisional conflict and perceptions of shared decision making are related. Prospective cohort study. Academic pediatric otolaryngology clinic. Sixty-five consecutive parents of children who underwent surgical consultation for elective otolaryngological procedures were prospectively enrolled. Participants completed the Shared Decision Making Questionnaire and the Decisional Conflict Scale. Surgeons completed the Shared Decision Making Questionnaire-Physician version. Eleven participants (16.9%) scored over 25 on the Decisional Conflict Scale, a previously defined clinical cutoff indicating significant decisional conflict. Parent years of education and parent ratings of shared decision making were significantly correlated with decisional conflict (positively and negatively correlated, respectively). A logistic regression indicated that shared decision making but not education predicted the presence of significant decisional conflict. Parent and physician ratings of shared decision making were not related, and there was no correlation between physician ratings of shared decision making and parental decisional conflict. Many parents experienced considerable decisional conflict when making decisions about their child's surgical treatment. Parents who perceived themselves as being more involved in the decision-making process reported less decisional conflict. Parents and physicians had different perceptions of shared decision making. Future research should develop and assess interventions to increase parents' involvement in decision making and explore the impact of significant decisional conflict on health outcomes. © American Academy of Otolaryngology-Head and Neck Surgery Foundation 2015.
Navigating the Decision Space: Shared Medical Decision Making as Distributed Cognition.
Lippa, Katherine D; Feufel, Markus A; Robinson, F Eric; Shalin, Valerie L
2017-06-01
Despite increasing prominence, little is known about the cognitive processes underlying shared decision making. To investigate these processes, we conceptualize shared decision making as a form of distributed cognition. We introduce a Decision Space Model to identify physical and social influences on decision making. Using field observations and interviews, we demonstrate that patients and physicians in both acute and chronic care consider these influences when identifying the need for a decision, searching for decision parameters, making actionable decisions Based on the distribution of access to information and actions, we then identify four related patterns: physician dominated; physician-defined, patient-made; patient-defined, physician-made; and patient-dominated decisions. Results suggests that (a) decision making is necessarily distributed between physicians and patients, (b) differential access to information and action over time requires participants to transform a distributed task into a shared decision, and (c) adverse outcomes may result from failures to integrate physician and patient reasoning. Our analysis unifies disparate findings in the medical decision-making literature and has implications for improving care and medical training.
Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography.
Kim, Kyounghae; Heinze, Katherine; Xu, Jiayun; Kurtz, Melissa; Park, Hyunjeong; Foradori, Megan; Nolan, Marie T
2017-08-01
The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.
Watson, Joanne; Wilson, Erin; Hagiliassis, Nick
2017-11-01
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions. Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life. All five case studies identified that supporters were most effective in providing decision-making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference. Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life. © 2017 John Wiley & Sons Ltd.
Fischer, Sophia; Soyez, Katja; Gurtner, Sebastian
2015-05-01
Research testing the concept of decision-making styles in specific contexts such as health care-related choices is missing. Therefore, we examine the contextuality of Scott and Bruce's (1995) General Decision-Making Style Inventory with respect to patient choice situations. Scott and Bruce's scale was adapted for use as a patient decision-making style inventory. In total, 388 German patients who underwent elective joint surgery responded to a questionnaire about their provider choice. Confirmatory factor analyses within 2 independent samples assessed factorial structure, reliability, and validity of the scale. The final 4-dimensional, 13-item patient decision-making style inventory showed satisfactory psychometric properties. Data analyses supported reliability and construct validity. Besides the intuitive, dependent, and avoidant style, a new subdimension, called "comparative" decision-making style, emerged that originated from the rational dimension of the general model. This research provides evidence for the contextuality of decision-making style to specific choice situations. Using a limited set of indicators, this report proposes the patient decision-making style inventory as valid and feasible tool to assess patients' decision propensities. © The Author(s) 2015.
Thamer, Mae; Kaufman, James S; Zhang, Yi; Zhang, Qian; Cotter, Dennis J; Bang, Heejung
2015-12-01
A shared decision-making tool could help elderly patients with advanced chronic kidney disease decide about initiating dialysis therapy. Because mortality may be high in the first few months after initiating dialysis therapy, incorporating early mortality predictors in such a tool would be important for an informed decision. Our objective is to derive and validate a predictive risk score for early mortality after initiating dialysis therapy. Retrospective observational cohort, with development and validation cohorts. US Renal Data System and claims data from the Centers for Medicare & Medicaid Services for 69,441 (aged ≥67 years) patients with end-stage renal disease with a previous 2-year Medicare history who initiated dialysis therapy from January 1, 2009, to December 31, 2010. Demographics, predialysis care, laboratory data, functional limitations, and medical history. All-cause mortality in the first 3 and 6 months. Predicted mortality by logistic regression. The simple risk score (total score, 0-9) included age (0-3 points), low albumin level, assistance with daily living, nursing home residence, cancer, heart failure, and hospitalization (1 point each), and showed area under the receiver operating characteristic curve (AUROC)=0.69 in the validation sample. A comprehensive risk score with additional predictors was also developed (with AUROC=0.72, high concordance between predicted vs observed risk). Mortality probabilities were estimated from these models, with the median score of 3 indicating 12% risk in 3 months and 20% in 6 months, and the highest scores (≥8) indicating 39% risk in 3 months and 55% in 6 months. Patients who did not choose dialysis therapy and did not have a 2-year Medicare history were excluded. Routinely available information can be used by patients with chronic kidney disease, families, and their nephrologists to estimate the risk of early mortality after dialysis therapy initiation, which may facilitate informed decision making regarding treatment options. Copyright © 2015 National Kidney Foundation, Inc. All rights reserved.
A Review of Shared Decision-Making and Patient Decision Aids in Radiation Oncology.
Woodhouse, Kristina Demas; Tremont, Katie; Vachani, Anil; Schapira, Marilyn M; Vapiwala, Neha; Simone, Charles B; Berman, Abigail T
2017-06-01
Cancer treatment decisions are complex and may be challenging for patients, as multiple treatment options can often be reasonably considered. As a result, decisional support tools have been developed to assist patients in the decision-making process. A commonly used intervention to facilitate shared decision-making is a decision aid, which provides evidence-based outcomes information and guides patients towards choosing the treatment option that best aligns with their preferences and values. To ensure high quality, systematic frameworks and standards have been proposed for the development of an optimal aid for decision making. Studies have examined the impact of these tools on facilitating treatment decisions and improving decision-related outcomes. In radiation oncology, randomized controlled trials have demonstrated that decision aids have the potential to improve patient outcomes, including increased knowledge about treatment options and decreased decisional conflict with decision-making. This article provides an overview of the shared-decision making process and summarizes the development, validation, and implementation of decision aids as patient educational tools in radiation oncology. Finally, this article reviews the findings from decision aid studies in radiation oncology and offers various strategies to effectively implement shared decision-making into clinical practice.
Frequencies of decision making and monitoring in adaptive resource management
Johnson, Fred A.
2017-01-01
Adaptive management involves learning-oriented decision making in the presence of uncertainty about the responses of a resource system to management. It is implemented through an iterative sequence of decision making, monitoring and assessment of system responses, and incorporating what is learned into future decision making. Decision making at each point is informed by a value or objective function, for example total harvest anticipated over some time frame. The value function expresses the value associated with decisions, and it is influenced by system status as updated through monitoring. Often, decision making follows shortly after a monitoring event. However, it is certainly possible for the cadence of decision making to differ from that of monitoring. In this paper we consider different combinations of annual and biennial decision making, along with annual and biennial monitoring. With biennial decision making decisions are changed only every other year; with biennial monitoring field data are collected only every other year. Different cadences of decision making combine with annual and biennial monitoring to define 4 scenarios. Under each scenario we describe optimal valuations for active and passive adaptive decision making. We highlight patterns in valuation among scenarios, depending on the occurrence of monitoring and decision making events. Differences between years are tied to the fact that every other year a new decision can be made no matter what the scenario, and state information is available to inform that decision. In the subsequent year, however, in 3 of the 4 scenarios either a decision is repeated or monitoring does not occur (or both). There are substantive differences in optimal values among the scenarios, as well as the optimal policies producing those values. Especially noteworthy is the influence of monitoring cadence on valuation in some years. We highlight patterns in policy and valuation among the scenarios, and discuss management implications and extensions. PMID:28800591
Frequencies of decision making and monitoring in adaptive resource management
Williams, Byron K.; Johnson, Fred A.
2017-01-01
Adaptive management involves learning-oriented decision making in the presence of uncertainty about the responses of a resource system to management. It is implemented through an iterative sequence of decision making, monitoring and assessment of system responses, and incorporating what is learned into future decision making. Decision making at each point is informed by a value or objective function, for example total harvest anticipated over some time frame. The value function expresses the value associated with decisions, and it is influenced by system status as updated through monitoring. Often, decision making follows shortly after a monitoring event. However, it is certainly possible for the cadence of decision making to differ from that of monitoring. In this paper we consider different combinations of annual and biennial decision making, along with annual and biennial monitoring. With biennial decision making decisions are changed only every other year; with biennial monitoring field data are collected only every other year. Different cadences of decision making combine with annual and biennial monitoring to define 4 scenarios. Under each scenario we describe optimal valuations for active and passive adaptive decision making. We highlight patterns in valuation among scenarios, depending on the occurrence of monitoring and decision making events. Differences between years are tied to the fact that every other year a new decision can be made no matter what the scenario, and state information is available to inform that decision. In the subsequent year, however, in 3 of the 4 scenarios either a decision is repeated or monitoring does not occur (or both). There are substantive differences in optimal values among the scenarios, as well as the optimal policies producing those values. Especially noteworthy is the influence of monitoring cadence on valuation in some years. We highlight patterns in policy and valuation among the scenarios, and discuss management implications and extensions.