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Sample records for aggressive end-of-life care

  1. Trends in the Aggressiveness of End-of-Life Care for Advanced Stomach Cancer Patients

    PubMed Central

    Hong, Ji Hyung; Rho, Sang-Young

    2013-01-01

    Purpose It is important to balance the appropriateness of active cancer treatments and end-of-life care to improve the quality of life for terminally ill cancer patients. This study describes the treatment patterns and end-of-life care in terminal gastric cancer patients. Materials and Methods We retrospectively analyzed the records of 137 patients with advanced gastric cancer receiving chemotherapy and dying between June 1, 2006 and May 31, 2011. We recorded interval between last chemotherapy dose and death; frequency of emergency room visits or admission to the intensive care unit in the last month before death; rate of hospice referral and agreement with written do-not-resuscitate orders; and change in laboratory values in the last three months before death. Results During the last six months of life, 130 patients (94.9%) received palliative chemotherapy; 86 (62.7%) during the final two months; 41 (29.9%) during the final month. During the final month, 53 patients (38.7%) visited an emergency room more than once; 21 (15.3%) were admitted to the intensive care unit. Hospice referral occurred in 54% (74 patients) of the patients; 93.4% (128 patients) gave written do-not-resuscitate orders. Platelets, aspartate aminotransferase and creatinine changed significantly two weeks before death; total bilirubin, one month before; and C-reactive protein, between four and two weeks before death. Conclusion Our results demonstrated that a significant proportion of gastric cancer patients received palliative chemotherapy to the end of life and the patients who stopped the chemotherapy at least one month before death had a lower rate of intensive care unit admission and longer overall survival than those who sustained aggressive chemotherapy until the last months of their lives. PMID:24453999

  2. Video Eases End-of-Life Care Discussions

    Cancer.gov

    Patients with advanced cancer who watched a video that depicts options for end-of-life care were more certain of their end-of-life decision making than patients who only listened to a verbal narrative.

  3. End-of-life care: Indian perspective.

    PubMed

    Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

    2013-01-01

    According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues. PMID:23858271

  4. End-of-life care: Indian perspective.

    PubMed

    Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

    2013-01-01

    According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues.

  5. End-of-life care: Indian perspective

    PubMed Central

    Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

    2013-01-01

    According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues. PMID:23858271

  6. Caring at the End of Life

    ERIC Educational Resources Information Center

    Olson, Sandy

    2008-01-01

    Dying and death have become more and more complicated for everyone. Technology and the patient autonomy movement have come together to create a host of possible end of life treatment dilemmas. The introduction of advance directives in medical decision-making has raised further issues about projecting treatment wishes into future, unknowable…

  7. Internists' attitudes towards terminal sedation in end of life care

    PubMed Central

    Kaldjian, L; Jekel, J; Bernene, J; Rosenthal, G; Vaughan-Sarrazin, M; Duffy, T

    2004-01-01

    Objective: To describe the frequency of support for terminal sedation among internists, determine whether support for terminal sedation is accompanied by support for physician assisted suicide (PAS), and explore characteristics of internists who support terminal sedation but not assisted suicide. Design: A statewide, anonymous postal survey. Setting: Connecticut, USA. Participants: 677 Connecticut members of the American College of Physicians. Measurements: Attitudes toward terminal sedation and assisted suicide; experience providing primary care to terminally ill patients; demographic and religious characteristics. Results: 78% of respondents believed that if a terminally ill patient has intractable pain despite aggressive analgesia, it is ethically appropriate to provide terminal sedation (diminish consciousness to halt the experience of pain). Of those who favoured terminal sedation, 38% also agreed that PAS is ethically appropriate in some circumstances. Along a three point spectrum of aggressiveness in end of life care, the plurality of respondents (47%) were in the middle, agreeing with terminal sedation but not with PAS. Compared with respondents who were less aggressive or more aggressive, physicians in this middle group were more likely to report having more experience providing primary care to terminally ill patients (p = 0.02) and attending religious services more frequently (p<0.001). Conclusions: Support for terminal sedation was widespread in this population of physicians, and most who agreed with terminal sedation did not support PAS. Most internists who support aggressive palliation appear likely to draw an ethical line between terminal sedation and assisted suicide. PMID:15467087

  8. Care management role in end-of-life discussions.

    PubMed

    Meyer, Star

    2012-01-01

    How do we prepare our patients for decisions that will need to be made for end-of-life care? End-of-life care discussions should occur early on in the patient's disease process and often requires a great deal of coordination between multiple caregivers. There are also ethical, cultural social and spiritual considerations during this very important time in the disease process. Research suggests that we are not doing an adequate job of addressing end-of-life care with our patients and that a great deal of money and resources are being spent in the last days of life when there may be no clinical indication to do so. Registered nurse case managers have a unique knowledge base to serve in the role of coordinating care and leading the multidisciplinary care team in an effort to use resources responsibly while providing patients and families with options for end-of-life care.

  9. Caring for People with Diabetes at the End of Life.

    PubMed

    Dunning, Trisha; Duggan, Nicole; Savage, Sally

    2016-11-01

    End-of-life care planning is assuming global significance. While general end-of-life care guidelines apply to diabetes, there are some diabetes-specific issues that need to be considered. These include the usual long trajectory to end-of-life care that enables clinicians and people with diabetes to proactively discuss when to change the focus of care from preventing diabetes complications (tight control) to a palliative approach. Palliative care aims to promote comfort and quality of life and reduce the unnecessary burden of care on individuals and their families. The aim of this paper is to discuss common disease trajectories and their relationship to diabetes care, outline strategies for proactively discussing these issues and suggest indications that palliative care is warranted. PMID:27658931

  10. Promoting excellence in end-of-life care in ALS.

    PubMed

    Mitsumoto, Hiroshi; Bromberg, Mark; Johnston, Wendy; Tandan, Rup; Byock, Ira; Lyon, Mary; Miller, Robert G; Appel, Stanley H; Benditt, Josh; Bernat, James L; Borasio, Gian Domenico; Carver, Alan C; Clawson, Lora; Del Bene, Maura L; Kasarskis, Edward J; LeGrand, Susan B; Mandler, Raul; McCarthy, Jane; Munsat, Theodore; Newman, Daniel; Sufit, Robert L; Versenyi, Andrea

    2005-09-01

    The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.

  11. Hospice care at the end of life.

    PubMed

    Herbst, Laurel

    2004-11-01

    Hospice care in the United States has evolved from a movement and philosophy to a new medical specialty that addresses sources of suffering at many levels. Hospice interdisciplinary teams use Maslow's hierarchy of human need to integrate the multiple domains that influence patients' well-being and assists in the development of treatment plans to prevent or alleviate suffering. Contributing to the effectiveness of this care is the Medicare Hospice Benefit, which since 1983 has served as a model and a reimbursement mechanism that has encouraged proliferation of hospices to deliver care in homes, hospitals, and long-term care facilities. The whole-person approach of hospice care may benefit all patients and can be integrated into all medical management.

  12. Theodicy and End-of-Life Care

    PubMed Central

    Swinton, John; Abbas, Syed Qamar

    2013-01-01

    This article examines theodicy—the vindication of God's goodness and justice in the face of the existence of evil from the perspectives of Judaism, Christianity, and Islam. We focus on the thought processes that chaplains, social workers, and other professionals may use in their care interventions to address issues of theodicy for patients. Theodical issues may cause anxiety and distress for believers, but they can also potentially be a source of relief and release. Palliative care patients with a religious worldview often struggle with whether God cares about, or has sent, their pain. How social workers and other clinicians respond to such questions will have a great impact on how patients express themselves and use their religious beliefs to cope with their situations. For patients holding religious/spiritual perspectives, discussion of theodicy may facilitate closer relationships between patients and their caregivers and result in more compassionate and empathic care. PMID:23777234

  13. Ethical care at the end of life.

    PubMed

    Latimer, E J

    1998-06-30

    In treating dying patients, who by virtue of their physical and emotional situation are frail and vulnerable, physicians must meet a high standard of professional, ethical care. Such a standard is based upon a philosophy of care that recognizes the patients' inherent worth as human beings and their uniqueness as individuals. The ethical and virtuous physician will practice in accordance with the principles of biomedical ethics that form the foundations of thought and treatment approaches in this area and will seek to do the best for the patient and the family. "Doing the best" includes respecting autonomy through gentle truth-telling, helping the patient and family to set treatment goals, and providing for symptom control, continuing attentive care and accompaniment throughout the course of the illness. Total care includes physical, emotional and spiritual aspects, is sensitive to cultural values and is best provided by an interdisciplinary team. Practices of symptom control in routine care and in crisis situations, as well as the cessation and non-initiation of treatment, will have as their goals the relief and comfort of the patient. The ethical physician will not act with the intention of bringing about the death of the patient, whether by ordering medication in excess of that required for symptom control, administering a lethal injection or any other means.

  14. End-of-life care in a psychiatric hospital

    PubMed Central

    Waterman, Lauren Z.; Denton, David; Minton, Ollie

    2016-01-01

    Since the Liverpool Care Pathway has been withdrawn in the UK, clinicians supporting the palliative needs of patients have faced further challenges, particularly for patients with dementia who are unable to go to a hospice owing to challenging behaviours. It is becoming more important for different services to provide long-term palliative care for patients with dementia. Mental health trusts should construct end-of-life care policies and train staff members accordingly. Through collaborative working, dying patients may be kept where they are best suited. We present the case study of a patient who received end-of-life care at a psychiatric hospital in the UK. We aim to demonstrate how effective end-of-life care might be provided in a psychiatric hospital, in accordance with recent new palliative care guidelines, and highlight potential barriers. PMID:27280036

  15. Jewish medical ethics and end-of-life care.

    PubMed

    Kinzbrunner, Barry M

    2004-08-01

    While Judaism espouses the infinite value of human life, Judaism recognizes that all life is finite and, as such, its teachings are compatible with the principles of palliative medicine and end-of-life care as they are currently practiced. Jewish medical ethics as derived from Jewish law, has definitions for the four cardinal values of secular medical ethics: autonomy, beneficence, nonmaleficence, and justice, with the major difference between Jewish law and secular medical ethics being that orthodox or traditional Jews are perceived to limit their autonomy by choosing, with the assistance and advice of their rabbis, to follow God's law as defined by the Bible and post-Biblical sources. With an understanding of Jewish medical ethics as defined by Jewish law, various issues pertaining to the care of Jewish patients who are near the end-of-life can be better understood. Jewish tradition contains within its textual sources the concept of terminal illness. The shortening of life through suicide, assisted suicide, or euthanasia is categorically forbidden. For patients who are terminally ill, treatments that are not potentially curative may be refused, especially when harm may result. Under certain circumstances, treatments may be withheld, but active treatment already started may not usually be withdrawn. While patients should generally not be lied to regarding their conditions, withholding information or even providing false information may be appropriate when it is felt that the truth will cause significant harm. Pain and suffering must be treated aggressively, even if there is an indirect risk of unintentionally shortening life. Finally, patients may execute advance directives, providing that the patient's rabbi is involved in the process.

  16. Symptom management in palliative care and end of life care.

    PubMed

    Bookbinder, Marilyn; McHugh, Marlene E

    2010-09-01

    There is a need for generalist- and specialist-level palliative care clinicians proficient in symptom management and care coordination. Major factors contributing to this need include changed disease processes and trajectories, improved medical techniques and diagnostic testing, successful screening for chronic conditions, and drugs that often prolong life. The rapid progressive illnesses and deaths that plagued the first half of the twentieth century have been replaced in the twenty-first century by increased survival rates. Conditions that require ongoing medical care beyond a year define the current chronic illness population. Long years of survival are often accompanied by a reduced quality of life that requires more medical and nursing care and longer home care. This article reviews the management of selected symptoms in palliative and end of life care.

  17. Bioethics for clinicians: 15. Quality end-of-life care.

    PubMed

    Singer, P A; MacDonald, N

    1998-07-28

    A physician who receives a call from the emergency department to see a patient with heart failure will have a clear framework within which to approach this problem. The thesis of this article is that physicians do not have an analogous conceptual framework for approaching end-of-life care. The authors present and describe a framework for end-of-life care with 3 main elements: control of pain and other symptoms, the use of life-sustaining treatments and support of those who are dying and their families. This 3-part framework can be used by clinicians at the bedside to focus their effort in improving the quality of end-of-life care.

  18. End of Life Issues in the Intensive Care Units

    PubMed Central

    Datta, Rashmi; Chaturvedi, R.; Rudra, A.; Jaideep, C.N.

    2012-01-01

    A structured discussion of End-of-Life (EOL) issues is a relatively new phenomenon in India. Personal beliefs, cultural and religious influences, peer, family and societal pressures affect EOL decisions. Indian law does not provide sanction to contentious issues such as do-not-resuscitate (DNR) orders, living wills, and euthanasia. Finally, published data on EOL decisions in Indian ICUs is lacking. What is needed is a prospective determination of which patients will benefit from aggressive management and life-support. A consensus regarding the concept of Medical Futility is necessary to give impetus to further discussion on more advanced policies including ideas such as Managed Care to restrict unnecessary health care costs, euthanasia, the principle of withhold and/or withdraw, ethical and moral guidelines that would govern decisions regarding futile treatment, informed consent to EOL decisions and do-not-resuscitate orders. This review examines the above concepts as practiced worldwide and looks at some landmark judgments that have shaped current Indian policy, as well as raising talking points for possible legislative intervention in the field. PMID:24532934

  19. Approach to optimal care at end of life.

    PubMed

    Nichols, K J

    2001-10-01

    At no other time in any patient's life is the team approach to care more important than at the end of life. The demands and challenges of end-of-life care (ELC) tax all physicians at some point. There is no other profession that is charged with this ultimate responsibility. No discipline in medicine is immune to the issues of end-of-life care except perhaps, ironically, pathology. This presentation addresses the issues, options, and challenges of providing optimal care at the end of life. It looks at the principles of ELC, barriers to good ELC, and what patients and families expect from ELC. Barriers to ELC include financial restrictions, inadequate care-givers, community support, legal issues, legislative issues, training needs, coordination of care, hospice care, and transitions for the patients and families. The legal aspects of physician-assisted suicide is presented as well as the approach of the American Osteopathic Association to ensure better education for physicians in the principles of ELC. PMID:11681166

  20. Hospital at home: home-based end of life care

    PubMed Central

    Shepperd, Sasha; Wee, Bee; Straus, Sharon E

    2014-01-01

    Background The policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and patients with a terminal illness would prefer to receive end of life care at home. Objectives To determine if providing home-based end of life care reduces the likelihood of dying in hospital and what effect this has on patients’ symptoms, quality of life, health service costs and care givers compared with inpatient hospital or hospice care. Search methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library) to October 2009, Ovid MED-LINE(R) 1950 to March 2011, EMBASE 1980 to October 2009, CINAHL 1982 to October 2009 and EconLit to October 2009. We checked the reference lists of articles identified for potentially relevant articles. Selection criteria Randomised controlled trials, interrupted time series or controlled before and after studies evaluating the effectiveness of home-based end of life care with inpatient hospital or hospice care for people aged 18 years and older. Data collection and analysis Two authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible we presented the data in narrative summary tables. Main results We included four trials in this review. Those receiving home-based end of life care were statistically significantly more likely to die at home compared with those receiving usual care (RR 1.33, 95% CI 1.14 to 1.55, P = 0.0002; Chi 2 = 1.72, df = 2, P = 0.42, I2 = 0% (three trials; N=652)). We detected no statistically significant differences for functional status (measured by the Barthel Index), psychological well-being or cognitive status, between patients receiving home-based end of life care compared with those receiving standard care (which

  1. End of life care services for patients with heart failure.

    PubMed

    Charnock, Louise A

    2014-08-26

    Heart failure has high incidence and prevalence in the UK. However, access to palliative care services for patients with heart failure is inequitable. Patients with heart failure often do not receive specialist palliative care at the end of life, or referral is made only in the last days of life. This results in lost opportunities for advance care planning, psychological support for patients and families and symptom management. Prognostic tools are useful in ensuring appropriate referral. However, the controversy regarding the Liverpool Care Pathway has created uncertainty for healthcare professionals, patients and families. This article examines palliative care and end of life care services for patients with heart failure. It presents the case for service development and examines the benefits for patients who traditionally may not have had access to this care. PMID:25138875

  2. Measuring End-of-Life Care Processes in Nursing Homes

    ERIC Educational Resources Information Center

    Temkin-Greener, Helena; Zheng, Nan; Norton, Sally A.; Quill, Timothy; Ladwig, Susan; Veazie, Peter

    2009-01-01

    Purpose: The objectives of this study were to develop measures of end-of-life (EOL) care processes in nursing homes and to validate the instrument for measuring them. Design and Methods: A survey of directors of nursing was conducted in 608 eligible nursing homes in New York State. Responses were obtained from 313 (51.5% response rate) facilities.…

  3. Improving end of life care for people with dementia.

    PubMed

    Regan, Ann; Tapley, Michael; Jolley, Davis

    2014-08-01

    Nurses caring for older patients across diverse settings will provide care for people with dementia approaching the end of their lives. Demographic changes mean that the number of people dying with dementia will increase, however nurses and other healthcare professionals may be unprepared to meet their needs. Factors that are essential to provide compassionate and dignified end of life care for people with dementia include effective communication with those with cognitive impairment and an awareness of likely causes of anxiety, fear and resistance to care when carrying out interventions. Accurate assessment and pain relief are required to ensure good end of life care. Knowledge of challenging and complex issues around maintenance of nutrition and hydration requirements, and communication skills to discuss the issues with families and carers are also required. PMID:25074121

  4. [Precarity, vulnerability, anticipating end-of-life care at home].

    PubMed

    Bonneval, Camille

    2016-02-01

    Many patients want to end their life at home. Care teams adapt to these wishes and organise a form of treatment which blends safety of care and the respect of the expectations of the patients and family members. When factors of precarity increase the vulnerability inherent to the end of life, caregivers anticipate and support as best as they can the difficulties encountered as testified by a hospital at home team in Dax. PMID:26861082

  5. Reflections on Hope and Its Implications for End-of-Life Care.

    PubMed

    Mattes, Malcolm D; Sloane, Michelle A

    2015-05-01

    Physicians caring for individuals with life-altering, incurable illnesses often have a desire to convey a sense of hope while also helping their patients prepare for the end of life to minimize unnecessary suffering and grief. Unfortunately, in the United States, most people receive more-aggressive treatments toward the end of life than studies would suggest that they desire. This reflects the challenging task of balancing optimism and realism, and how providing a false sense of hope for a cure for too long a time while avoiding advance care planning may contribute significantly to the problem. This article explores the interplay of hope and advance care planning, and suggests a need for excellent individualized communication in the setting of advanced cancer to improve end-of-life care.

  6. The changing nature of end of life care

    PubMed Central

    Cauldwell, Katrine; Stone, Paddy

    2015-01-01

    Good end of life care (EOLC) for patients with incurable cancer is becoming a greater priority for oncologists in recent years. Frameworks such as the Liverpool Care Pathway (LCP) have often been helpful in guiding good care at the end of life. However, in the past year, the LCP has been phased out of use in the United Kingdom (UK), following concerns that it was poorly implemented. This review describes the LCP's origins in the UK, its strengths and limitations, and the concerns that prompted a review of its use. It describes the recommendations for change made by an independent review, and the alternative strategies now being developed in the UK to guide good EOLC. Although the LCP is still being widely used worldwide, the lessons learned from the UK can be widely applied in other countries. PMID:26157285

  7. Control and end-of-life care: Does ethnicity matter?

    PubMed Central

    Volker, Deborah L.

    2006-01-01

    Patient control and autonomy are core values in Western bioethics and important components of end-of-life (EOL) care. However, the centrality of the patient as decision maker may not be relevant to culturally diverse groups of people. The purpose of this article is to present results of a literature review of patient control and ethnicity within the context of EOL care. The review revealed that the interplay between control and ethnicity in EOL care is complex and unpredictable. Implications for clinical care and future research are presented. PMID:16329196

  8. End-of Life Care and Barriers for Female Inmates

    PubMed Central

    Loeb, Susan J.; Penrod, Janice; Hollenbeak, Christopher S.; Smith, Carol A.

    2011-01-01

    The number of female inmates is growing, and their average age is increasing. As a result, end-of-life care is situated in a highly restrictive environment with a focus on security rather than comfort. We describe the need for and potential barriers to humane care and provide care strategies that can be useful in a complex organizational system. Frontline workers such as nurses who understand the balance between care and control must promote change in the women’s prison system. PMID:21645114

  9. End-of-life care in a children's hospice program.

    PubMed

    Steele, Rose; Davies, Betty; Collins, John B; Cook, Karen

    2005-01-01

    A project was completed in 1999 to evaluate the Canuck Place children's hospice program. This article reports only on the end-of-life care component. Results are provided from mail-out surveys with families who required end-of-life care and are supplemented by qualitative data which were collected from interviews with individuals prior to the survey. Eighteen families completed face-to-face interviews and another 70 families completed the mail-out questionnaire developed from the initial interviews. A total of 39 parents responded to the survey section about end-of-life care services. Results indicated that parents were reasonably comfortable discussing death with staff; they generally felt well prepared for their child's death because of the staff; the death of another child had a significant effect on families; parents' wishes at the time of their child's death were very supported by staff; and families were well supported by staff at the time of a child's death. Implications for practice and suggestions for future research are discussed.

  10. Pediatric End-of-Life Issues and Palliative Care

    PubMed Central

    Michelson, Kelly Nicole; Steinhorn, David M.

    2007-01-01

    Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care. In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information. PMID:18438449

  11. Compassionate communities: end-of-life care as everyone's responsibility.

    PubMed

    Kellehear, Allan

    2013-12-01

    In early 2013, an online survey of over 200 UK palliative care services published in the British Medical Journal found that most of these services were prioritizing 'community engagement' initiatives, most commonly adopting a 'compassionate community' model. Later this same year, a report released by the National Council for Palliative Care and the charity Murray Hall Community Trust, described the increasing uptake of compassionate communities by palliative care services in England. This review examines this new policy and practice development in British end-of-life care explaining its conceptual origins and describing its policy importance to current practice. Why services are increasingly turning to community partnerships and the reasons they believe that this approach might enhance the effectiveness and reach of their clinical work are described.

  12. End-of-life care in advanced dementia.

    PubMed

    Heron, Christopher R; Simmons, B Brent

    2014-10-01

    In the next 30 years, the average age of the population will continue to increase, as will the prevalence of dementia. The management of advanced dementia requires the careful orchestration of communication, prognostication, patient care, and caregiver education. Understanding the specific tools available to establish prognosis and guide medical management in these complicated medical patients greatly improves patient and caregiver satisfaction at the end of the patient's life. In caring for patients with advanced-stage dementia, providers should be knowledgeable regarding the terminal nature of the condition and its common comorbid diseases, and should be prepared to educate the patients' caregivers, building a structure of support for the patient's benefit and navigating the complexities of end-of-life care. PMID:25414940

  13. End-of-life care in patients with advanced lung cancer.

    PubMed

    Lim, Richard B L

    2016-10-01

    Despite advances in the detection, pathological diagnosis and therapeutics of lung cancer, many patients still develop advanced, incurable and progressively fatal disease. As physicians, the duties to cure sometimes, relieve often and comfort always should be a constant reminder to us of the needs that must be met when caring for a patient with lung cancer. Four key areas of end-of-life care in advanced lung cancer begin with first recognizing 'when a patient is approaching the end of life'. The clinician should be able to recognize when the focus of care needs to shift from an aggressive life-sustaining approach to an approach that helps prepare and support a patient and family members through a period of progressive, inevitable decline. Once the needs are recognized, the second key area is appropriate communication, where the clinician should assist patients and family members in understanding where they are in the disease trajectory and what to expect. This involves developing rapport, breaking bad news, managing expectations and navigating care plans. Subsequently, the third key area is symptom management that focuses on the goals to first and foremost provide comfort and dignity. Symptoms that are common towards the end of life in lung cancer include pain, dyspnoea, delirium and respiratory secretions. Such symptoms need to be anticipated and addressed promptly with appropriate medications and explanations to the patient and family. Lastly, in order for physicians to provide quality end-of-life care, it is necessary to understand the ethical principles applied to end-of-life-care interventions. Misconceptions about euthanasia versus withholding or withdrawing life-sustaining treatments may lead to physician distress and inappropriate decision making. PMID:27585597

  14. Strengthening end-of-life care through specialty nursing certification.

    PubMed

    Esper, Peg; Lockhart, Joan Such; Murphy, Cynthia Miller

    2002-01-01

    The purpose of this study was to determine the adequacy of content related to end-of-life (EOL) care in materials used in the nursing certification process across clinical nursing specialties. Thirty-eight certification examination blueprints, 18 specialty nursing scope and standards of practice documents, and 28 specialty nursing core curriculum text books were analyzed by using descriptive statistics to determine the quantity and quality of content related to nine critical areas of EOL content contained in them. Fifteen (38 per cent) of the certification examination blueprints contained at least one of the critical EOL content areas. Eight (44 per cent) of the scope and standards of practice documents contained at least one sentence on EOL care. Seven (25 per cent) of the 28 textbooks contained at least one chapter dedicated to EOL care content, and 129.5 (0.8 per cent) of the 15,706 textbook pages reviewed were dedicated to EOL care content. Expert ratings regarding the overall accuracy, currency, and comprehensiveness of EOL content found in the textbooks were poor to good. An increased focus on EOL care in the nursing specialty certification process is warranted. The content of nursing specialty certification examinations has a direct influence on nursing education as well as a significant impact on nursing practice in clinical specialty areas. PMID:12096361

  15. End-of-life care in the neonatal intensive care unit: applying comfort theory.

    PubMed

    Marchuk, Allison

    2016-07-01

    The provision of quality end-of-life care is essential when a neonate is dying. End-of-life care delivered in a neonatal intensive care unit (NICU) must consider the needs of both the newborn and their family. The purpose of this paper is to demonstrate how comfort theory and its associated taxonomic structure can be used as a conceptual framework for nurses and midwives providing end-of-life care to neonates and their families. Comfort theory and its taxonomic structure are presented and issues related to end-of-life care in the NICU are highlighted. A case study is used to illustrate the application of comfort theory and issues related to implementation are discussed. The delivery of end-of-life care in the NICU can be improved through the application of comfort.

  16. End-of-Life Care Policies in Flemish Residential Care Facilities Accommodating Persons with Intellectual Disabilities

    ERIC Educational Resources Information Center

    D'Haene, I.; Pasman, H. R. W.; Deliens, L.; Bilsen, J.; Mortier, F.; Stichele, R. Vander

    2010-01-01

    Objective: This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end-of-life care. Methods: A…

  17. End-of-Life Care Interventions: An Economic Analysis

    PubMed Central

    Pham, B; Krahn, M

    2014-01-01

    Background The annual cost of providing care for patients in their last year of life is estimated to account for approximately 9% of the Ontario health care budget. Access to integrated, comprehensive support and pain/symptom management appears to be inadequate and inequitable. Objective To evaluate the cost-effectiveness of end-of-life (EoL) care interventions included in the EoL care mega-analysis. Data Sources Multiple sources were used, including systematic reviews, linked health administration databases, survey data, planning documents, expert input, and additional literature searches. Review Methods We conducted a literature review of cost-effectiveness studies to inform the primary economic analysis. We conducted the primary economic analysis and budget impact analysis for an Ontario cohort of decedents and their families and included interventions pertaining to team-based models of care, patient care planning discussions, educational interventions for patients and caregivers, and supportive interventions for informal caregivers. The time horizon was the last year of life. Costs were in 2013 Canadian dollars. Effectiveness measures included days at home, percentage dying at home, and quality-adjusted life-days. We developed a Markov model; model inputs were obtained from a cohort of Ontario decedents assembled from Institute for Clinical Evaluative Sciences databases and published literature. Results In-home palliative team care was cost-effective; it increased the chance of dying at home by 10%, increased the average number of days at home (6 days) and quality-adjusted life-days (0.5 days), and it reduced costs by approximately $4,400 per patient. Expanding in-home palliative team care to those currently not receiving such services (approximately 45,000 per year, at an annual cost of $76–108 million) is likely to improve quality of life, reduce the use of acute care resources, and save $191–$385 million in health care costs. Results for the other

  18. Defining end-of-life care from perspectives of nursing ethics.

    PubMed

    Izumi, Shigeko; Nagae, Hiroko; Sakurai, Chihoko; Imamura, Emiko

    2012-09-01

    Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based on a medical model and are restrictive in terms of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers.

  19. Empowering family members in end-of-life care decision making in the intensive care unit.

    PubMed

    Browning, Annette M

    2009-01-01

    Critical care nurses are often faced with working with families during the end-of-life care of a loved one. Often there is indecisiveness in family members of critically ill patients when faced with making these difficult decisions. The purpose of this manuscript is to describe origins of indecisiveness in family members of critically ill patients who are faced with end-of-life care decisions. Strategies to empower family members during this crucial time are also discussed. PMID:19104247

  20. Australian nursing students' stories of end-of-life care simulation.

    PubMed

    Gillan, Pauline Catherine; van der Riet, Pamela; Jeong, Sarah

    2016-03-01

    Because nurses are at the forefront of end-of-life care, it is imperative that nursing students are prepared for this role upon graduation. Research suggests that many nursing students are unprepared to deliver compassionate and quality end-of-life care. There have been many attempts to address this need; one emerging method is end-of-life care simulation. This paper explores the experiences of 18 undergraduate nursing students of end-of-life care simulation. Participants' stories were obtained via observation during end-of-life care simulation, audio-recorded post simulation debriefing, and semi-structured interviews. Using Clandinin and Connolly's three dimensions of Narrative Inquiry (temporality, spatiality, and sociality) participants' stories reflected convergence of time, place, and person. Findings revealed three distinct plotlines along a time continuum, specifically surrounding time of death: (i) "The privilege of end-of-life care;" (ii) "Witnessing death as surreal;" and (iii) "The honor of providing after-death care." Participants' narratives suggest that end-of-life care simulation is an important means of preparing students for clinical end-of-life care experiences. This has implications for nursing educators wishing to consider simulation in end-of-life care education.

  1. Palliative and end of life care for people living with dementia in care homes: part 1.

    PubMed

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-22

    The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death. The policies and tools used in the provision of palliative and end of life care are discussed, including advance care planning and The Gold Standards Framework. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. The second part of this article will discuss end of life care and the best practices for providing end of life care, including nutrition and hydration, oral hygiene, pain management and spiritual care. PMID:27332611

  2. End-of-Life Care in an Acute Care Hospital: Linking Policy and Practice

    ERIC Educational Resources Information Center

    Sorensen, Ros; Iedema, Rick

    2011-01-01

    The care of people who die in hospitals is often suboptimal. Involving patients in decisions about their care is seen as one way to improve care outcomes. Federal and state government policymakers in Australia are promoting shared decision making in acute care hospitals as a means to improve the quality of end-of-life care. If policy is to be…

  3. Barriers to optimum end-of-life care for minority patients.

    PubMed

    Krakauer, Eric L; Crenner, Christopher; Fox, Ken

    2002-01-01

    Although major efforts are underway to improve end-of-life care, there is growing evidence that improvements are not being experienced by those at particularly high risk for inadequate care: minority patients. Ethnic disparities in access to end-of-life care have been found that reflect disparities in access to many other kinds of care. Additional barriers to optimum end-of-life care for minority patients include insensitivity to cultural differences in attitudes toward death and end-of-life care and understandable mistrust of the healthcare system due to the history of racism in medicine. These barriers can be categorized as institutional, cultural, and individual. Efforts to better understand and remove each type of barrier are needed. Such efforts should include quality assurance programs to better assess inequalities in access to end-of-life care, political action to address inadequate health insurance and access to medical school for minorities, and undergraduate and continuing medical education in cultural sensitivity.

  4. Innovative Models for Developing Post-Masters Curriculum in End-of-Life Care

    ERIC Educational Resources Information Center

    Berzoff, Joan; Dane, Barbara; Cait, Cheryl-Anne

    2005-01-01

    Given two million deaths annually in the U. S., social work education and training have been cited as woefully inadequate in end-of-life care. In response, two of the authors developed two post-Masters programs in end-of-life care for social work. This paper describes their curricula and the methods used to evaluate both programs, including…

  5. Cultural differences with end-of-life care in the critical care unit.

    PubMed

    Doolen, Jessica; York, Nancy L

    2007-01-01

    Critical care nurses are providing healthcare for an increasingly multicultural population. This ever-increasing diversity in cultures and subcultures presents a challenge to nurses who want to provide culturally competent care. It is common for patients and families to face difficult decisions about end-of-life care in critical care units, and minority cultures do not always believe in the Westerner's core values of patient autonomy and self-determination. Knowledge of these cultural differences is fundamental if critical care nurses wish to provide appropriate and culturally competent information regarding end-of-life decisions. PMID:17704674

  6. Do Personality Traits Moderate the Impact of Care Receipt on End-of-Life Care Planning?

    ERIC Educational Resources Information Center

    Ha, Jung-Hwa; Pai, Manacy

    2012-01-01

    Purpose of the Study: This study examines (a) the association between being a care recipient and end-of-life care planning (EOLCP) and (b) the extent to which personality traits moderate the relationship between care receipt and EOLCP. Design and Methods: Data are drawn from the Wisconsin Longitudinal Study, a survey of Wisconsin high school…

  7. Social, Economic, and Political Issues Affecting End-of-Life Care.

    PubMed

    Sopcheck, Janet

    2016-02-01

    For many decades, Americans showed a preference for delaying death through a technological imperative that often created challenges for nurses in caring for dying patients and their families. Because of their vast knowledge of health and healing, and their proximity to patients' bedsides, nurses are often well positioned to advocate for healthcare reform and legislation to improve end-of-life care. This article provides an overview of the social, economic, and political factors that are shaping end-of-life care in the United States. First, historical perspectives on end-of-life care are presented to enhance understanding of why some clinicians and patients seem to resist change to current practices. Second, end of care issues related to advanced technology utilization, societal expectations of care, clinical practices, financial incentives, palliative care services, and policy reforms are discussed. Finally, future recommendations are provided to encourage nurses and other healthcare providers to improve care for individuals facing end-of-life care decisions.

  8. End-of-Life Decisions: An Important Theme in the Care for People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Wagemans, A.; van Schrojenstein Lantman-de-Valk, H.; Tuffrey-Wijne, I.; Widdershoven, G.; Curfs, L.

    2010-01-01

    Background: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method: A…

  9. Pharmacy Students' Attitudes Toward Death and End-of-life Care

    PubMed Central

    Broeseker, Amy E.

    2010-01-01

    Objectives To assess pharmacy students' attitudes toward death and end-of-life care. Methods Third-year pharmacy students enrolled in the Ethics in Christianity and Health Care course were administered a survey instrument prior to introduction of the topic of end-of-life care. Students' attitudes toward different professions' roles in end-of-life care and their comfort in discussing end-of-life issues were assessed. The survey instrument was readministered to the same students at the end of their fourth year. Results On most survey items, female students responded more favorably toward death and end-of-life care than male students. One exception was the perceived emotional ability to be in the room of a dying patient or loved one. Post-experiential survey responses were generally more favorable toward death and end-of-life care than were pre-discussion responses. Conclusions In general, when surveyed concerning death and end-of-life care, female students responded more favorably than male students, and responses at the end of the fourth year were more favorable than at the beginning of the course. PMID:21045946

  10. Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making.

    PubMed

    Waters, C M

    2001-05-01

    Ethnicity has been found to explain some differences across ethnic groups regarding end-of-life care choices. African Americans appear to be less likely to know about advance directives and to complete them. Five community-based focus groups, consisting of 27 African Americans, were convened to explore their perspectives of end-of-life care planning and decision making. Content analysis revealed six themes: death is not an option, religiosity and end-of-life care planning is a paradox, the health care system is a microcosm of societal and historical events, a "trusted" family member or friend is the contract for life-and-death options, ethnically relevant initiatives are essential to increase advance directives participation, and people are people. These themes serve to guide health care professionals in minimizing actions that increase African Americans' mistrust of the health care system not only in end-of-life situations but also in all of health care-related interactions.

  11. Embracing a broad spirituality in end of life discussions and advance care planning.

    PubMed

    Churchill, Larry R

    2015-04-01

    Advance care planning for end of life typically focuses on the mechanics of completing living wills and durable power of attorney documents. Even when spiritual aspects of end of life care are discussed, the dominant assumptions are those of traditional religious systems. A broad view of spirituality is needed, one that may involve traditional religious beliefs but also includes personal understandings of what is holy or sacred. Embracing this broad practice of spirituality will help both familial and professional caregivers honor an essential aspect of end of life discussions and promote greater discernment of the deep meaning in advance care documents.

  12. Good end-of-life care according to patients and their GPs

    PubMed Central

    Borgsteede, Sander D; Graafland-Riedstra, Corrie; Deliens, Luc; Francke, Anneke L; van Eijk, Jacques ThM; Willems, Dick L

    2006-01-01

    Background Most patients prefer to die at home, where a GP provides end-of-life care. A few previous studies have been directed at the GPs' values on good end-of-life care, yet no study combined values of patients and their own GP. Aim To explore the aspects valued by both patients and GPs in end-of-life care at home, and to reflect upon the results in the context of future developments in primary care. Design of study Interviews with patients and their own GP. Setting Primary care in the Netherlands. Method Qualitative, semi-structured interviews with 20 GPs and 30 of their patients with a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. Results Patients and GPs had comparable perceptions of good end-of-life care. Patients and GPs identified four core items that they valued in end-of-life care: availability of the GP for home visits and after office-hours, medical competence and cooperation with other professionals, attention and continuity of care. Conclusions Future developments in the organisation of primary care such as the restriction of time for home visits, more part-time jobs and GP cooperatives responsible for care after office hours, may threaten valued aspects in end-of-life care. PMID:16438811

  13. Long-term care benefits may reduce end-of-life medical care costs.

    PubMed

    Holland, Stephen K; Evered, Sharrilyn R; Center, Bruce A

    2014-12-01

    Abstract This study explores whether personal care services for functionally dependent or cognitively impaired individuals paid for by a long-term care (LTC) insurance policy can reduce health care utilization and costs at the end of life. This retrospective study uses propensity score matching methodology, hierarchical multiple regression, and Poisson regression to compare 830 decedents who utilized benefits from a voluntary LTC insurance plan ("claimants") to 6860 decedents who never purchased coverage but were similar to claimants on 17 variables, including age, sex, frailty, burden of illness markers, and propensity to have needed LTC services. Claimants using LTC benefits experienced significantly lower health care costs at end of life, including 14% lower total medical costs, 13% lower pharmacy costs, 35% lower inpatient admission costs, and 16% lower outpatient visit costs. They also experienced 8% fewer inpatient admissions and 10% fewer inpatient days. The presence of dementia at the end of life moderated these effects. This study suggests that use of insurance-based LTC services measurably reduces health care expenditures at the end of life. (Population Health Management 2014;17:332-339).

  14. Educational Intervention in End-of-Life Care: An Evidence-Based Analysis

    PubMed Central

    Nevis, I

    2014-01-01

    Background End-of-life care is a complex service. The education of health care providers, patients nearing end of life, and informal caregivers plays a vital role in increasing knowledge about the care options available. This review looks at whether education helps improve outcomes for patients nearing the end of life and for their informal caregivers. Objectives To systematically review and study the effectiveness of educational interventions for health care providers, patients nearing the end of life, and informal caregivers to improve patient and informal caregiver outcomes. Data Sources We performed a literature search using Ovid MEDLINE, Ovid MEDLINE In-Process and Other Non-Indexed Citations, Ovid Embase, Cumulative Index to Nursing & Allied Health Literature (CINAHL), and EBM Reviews for studies published from January 1, 2003, to October 31, 2013. Review Methods We conducted this review according to published guidelines and using a prespecified protocol. We included primary studies that evaluated any educational intervention in end-of-life care for health care providers, patients, or informal caregivers and measured patient or informal caregiver quality of life using validated scales. Results The database search yielded 2,468 citations; we included 6 studies in the review. Studies reported on educational interventions for health care providers, patients nearing the end of life, and informal caregivers. After an educational intervention, patients nearing the end of life had better symptom control and informal caregivers had improved quality of life. However, there was no significant change in patient quality of life or pain control, or in informal caregiver or health care provider satisfaction. There was no decrease in resource utilization. Limitations Most studies did not report data adequately, did not define “routine care” and were not blinded. Allocation concealment was also inadequately reported. Conclusions Based on moderate quality evidence

  15. Look at End-of-Life Care Issues for Native Americans

    MedlinePlus

    ... palliative care, hospice, and end-of-life services lags behind the rest of the nation. The AI/ ... partners and collaborators have been working on an educational approach designed, Dr. Kaur said, “to bring these ...

  16. Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes.

    PubMed

    Manheim, Chelsea E; Haverhals, Leah M; Jones, Jacqueline; Levy, Cari R

    2016-01-01

    The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans' family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans' families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans' needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans' end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran's death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.

  17. [The role of care assistants at the end of life].

    PubMed

    Estrate, Margot; Lacour, Frédérique

    2015-02-01

    Personal care assistants have a special place, at home, with patients at the end of their life. At the interface between carers, relatives and the person they take care of, they often live intense situations, in close contact. The Parisian palliative care network Quiétude shares their voice. PMID:26144828

  18. Parent Perspectives of Neonatal Intensive Care at the End-of-Life.

    PubMed

    Currie, Erin R; Christian, Becky J; Hinds, Pamela S; Perna, Samuel J; Robinson, Cheryl; Day, Sara; Meneses, Karen

    2016-01-01

    This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death. PMID:27261370

  19. Getting the priorities right in end-of-life care.

    PubMed

    Anderson, Pat

    The Leadership Alliance for the Care of Dying People has drawn up five priorities for the care of dying people. The priorities replace the Liverpool Care Pathway, which was widely criticised for promoting a tick-box approach to the care of the dying. The five priorities focus on: recognising that someone is dying; communicating sensitively with them and their family; involving them in decisions; supporting them and their family; and creating an individual plan of care that includes adequate nutrition and hydration. The alliance has outlined the duties and responsibilities of nurses and other health professionals when caring for people at the end of their lives, with an emphasis on compassionate care. PMID:25188966

  20. Ethics and end of life care: the Liverpool Care Pathway and the Neuberger Review.

    PubMed

    Wrigley, Anthony

    2015-08-01

    The Liverpool Care Pathway for the Dying has recently been the topic of substantial media interest and also been subject to the independent Neuberger Review. This review has identified clear failings in some areas of care and recommended the Liverpool Care Pathway be phased out. I argue that while the evidence gathered of poor incidences of practice by the Review is of genuine concern for end of life care, the inferences drawn from this evidence are inconsistent with the causes for the concern. Seeking to end an approach that is widely seen as best practice and which can genuinely deliver high quality care because of negative impressions that have been formed from failing to implement it properly is not a good basis for radically overhauling our approach to end of life care. I conclude that improvements in training, communication and ethical decision-making, without the added demand to end the Liverpool Care Pathway, would have resulted in a genuine advance in end of life care.

  1. Process evaluation of an educational intervention to improve end-of-life care: the Education for Physicians on End-of-Life Care (EPEC) program.

    PubMed

    VanGeest, J B

    2001-01-01

    Despite the growing importance of end-of-life care and the need to improve it, physicians receive little formal training in palliative care. The Education for Physicians on End-of-life Care (EPEC) project, developed by the American Medical Association and the Robert Wood Johnson Foundation, tested a train-the-trainer educational intervention to address this deficiency. This paper presents data from a process evaluation of the initial rollout of EPEC. By all accounts, EPEC provided a state-of-the-art curriculum covering important and clinically relevant topics to the care of the dying patient. It was less clear, however, if EPEC adequately prepared trainees to teach these new skills to other practicing physicians. Factors that may advance efforts to generalize EPEC to other settings and improve future applications of the program are discussed.

  2. Using routine data to improve palliative and end of life care

    PubMed Central

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-01-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data. PMID:26928173

  3. Using routine data to improve palliative and end of life care.

    PubMed

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-09-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

  4. Type of Disease May Dictate End-Of-Life Care

    MedlinePlus

    ... the University of Colorado School of Medicine in Aurora. "This is called the 'terrible choice,' " he said. " ... care physician, University of Colorado School of Medicine, Aurora; Eric Widera, M.D., associate professor, medicine, University ...

  5. Instrument Development Measuring Critical Care Nurses’ Attitudes and Behaviors with End-of-Life Care

    PubMed Central

    Zomorodi, Meg; Lynn, Mary R.

    2010-01-01

    Background Although critical care nurses are expected to focus on providing life-sustaining measures, many intensive care patients actually receive end-of-life care. Objectives To develop an instrument to measure nursing attitudes and behaviors with end-of-life care. Method Phase I was focused on item development from a content analysis of the literature and qualitative interviews of critical care nurses. Phase II consisted of content validity assessment and pilot testing. Phase III included field testing, factor analysis, and reliability estimation. Results The Values of Intensive Care Nurses for End-of-Life (INTEL-Values; n = 695) was found to have four factors: Self-appraisal, Appraisal of Others, Emotional Strain, and Moral Distress. Reliability estimates (alpha) were acceptable at .59–.78, but the interitem (.12–.78) range was wider than desirable. Test-retest reliability was deemed adequate based on Pearson’s correlations (.68–.81) and intraclass correlation coefficients (.65–.79) but less so when considering kappa (.05–.30). The Behaviors of Intensive Care Nurses for End-of-Life (INTEL-Behaviors; n = 682) was found to have two factors: Communication and Nursing Tasks. Reliability estimates were adequate when considering internal consistency (alpha .67 and .78, respectively), item total correlations (.30–.61) and test-retest as judged by Pearson’s and ICCs (.77–.81), but not when Kappa was considered (.02–.40). The interitem correlations (.20–.35) were also lower than desirable. Discussion Both the INTEL-Values and the INTEL-Behaviors were found to have conceptually linked factors and acceptable internal consistency estimates (alpha). However, test-retest estimates were inconsistent, suggesting further work needs to be done on the stability of these instruments. PMID:20467339

  6. Staff Carers' Understanding of End of Life Care

    ERIC Educational Resources Information Center

    Friedman, Sandra L.; Choueiri, Roula; Gilmore, Dana

    2008-01-01

    Staff carers in pediatric skilled nursing facilities (PSNF) deal directly with dying residents, and are on the forefront of communication with families. These providers have expressed misunderstandings regarding the meaning of resuscitation status and redirection of care. This descriptive study evaluated perceptions and understanding of end of…

  7. [Palliative care: accompanying persons at the end of life].

    PubMed

    Espinar Cid, Victoria

    2012-01-01

    The philosophy, the essence and the therapeutic goals of palliative care help the health professionals offer the patients a high quality assistance on their last stage of life. With both, a human and scientific view, it's possible to deal with the relief of suffer on all dimensions. PMID:22548665

  8. [Palliative care: accompanying persons at the end of life].

    PubMed

    Espinar Cid, Victoria

    2012-01-01

    The philosophy, the essence and the therapeutic goals of palliative care help the health professionals offer the patients a high quality assistance on their last stage of life. With both, a human and scientific view, it's possible to deal with the relief of suffer on all dimensions.

  9. Economic implications of end-of-life care in the ICU

    PubMed Central

    Khandelwal, Nita; Curtis, J. Randall

    2014-01-01

    Purpose of review Advance care planning and palliative care interventions can improve the quality of end-of-life care by reducing unwanted high intensity care at the end of life. This may have important economic implications and may reduce financial burden of patients' families. We review the literature to examine the impact advance care planning and palliative care have on ICU utilization, specifically ICU admissions and ICU LOS, to provide insight into ways to reduce costs and financial burden of care while simultaneously improving quality of care. Recent findings We identified 3 studies assessing the impact of palliative care consultation on ICU admissions for patients with life-limiting illness; all 3 demonstrate reduced ICU admissions for patients receiving palliative care consultation. Among 16 studies evaluating ICU LOS as an outcome, 5 report no change and 11 report decrease in LOS for patients receiving advance care planning or palliative care. These studies are heterogeneous in design and target population; however, a trend towards reduced ICU utilization exists. Summary Advance care planning and palliative care can reduce ICU utilization at the end of life. The degree to which reducing ICU utilization decreases emotional and financial burden of end-of-life care for patients and families is unknown. PMID:25222642

  10. A Systematic Review of Measures of End-of-Life Care and Its Outcomes

    PubMed Central

    Mularski, Richard A; Dy, Sydney M; Shugarman, Lisa R; Wilkinson, Anne M; Lynn, Joanne; Shekelle, Paul G; Morton, Sally C; Sun, Virginia C; Hughes, Ronda G; Hilton, Lara K; Maglione, Margaret; Rhodes, Shannon L; Rolon, Cony; Lorenz, Karl A

    2007-01-01

    Objective To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies. Data Sources English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care. Study Design Systematic review of end-of-life care literature. Extraction Methods Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies. Principal Findings Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies. Conclusions In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards. PMID:17850523

  11. Achieving Quality Care at the End of Life: A Focus of the End-of-Life Nursing Education Consortium (ELNEC) Curriculum.

    ERIC Educational Resources Information Center

    Sherman, Deborah Witt; Matzo, Marianne LaPorte; Rogers, Susan; McLaughlin, Maureen; Virani, Rose

    2002-01-01

    Describes one of nine modules in the End-of-Life Nursing Education Consortium Curriculum, a train-the-trainer course to prepare nurses for palliative care. Discuses teaching strategies to achieve high-quality care and includes a list of print and web resources. (SK)

  12. Interviews on end-of-life care with older people: reflections on six european studies.

    PubMed

    Pleschberger, Sabine; Seymour, Jane E; Payne, Sheila; Deschepper, Reginald; Onwuteaka-Philipsen, Bregje D; Rurup, Mette L

    2011-11-01

    Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European countries: Belgium, Germany, the Netherlands, and the United Kingdom. The reflection process was informed by four full-day meetings between the authors and referral to sources including the study interview guides, summary "pen portraits" about key issues encountered in the interviews, and key sections of the interview transcripts. We identified as major challenges accessing people, the introduction of end-of-life issues in an interview, managing emotions, the presence of companions, and reciprocity. Formal ethical review committees rarely take into account these complex issues. We concluded that is it necessary to maintain an ongoing reflexive stance to enhance qualitative research practice in the intersecting fields of aging and end-of-life studies.

  13. Dignity and psychotherapeutic considerations in end-of-life care.

    PubMed

    Chochinov, Harvey Max; Hack, Thomas; Hassard, Thomas; Kristjanson, Linda J; McClement, Susan; Harlos, Mike

    2004-01-01

    The basic tenets of palliative care are frequently subsumed under the goal of helping patients to die with dignity. Our research group has studied the issue of dignity, with dying patients serving as the primary informants. This paper reviews some of our findings, including an overview of the Dignity Model that derives from our empirical work. Furthermore, this paper summarizes various psychotherapeutic approaches which have been considered for this vulnerable patient population. Finally, we provide the rationale based on the Dignity Model for a psychotherapeutic intervention we have coined Dignity Therapy. This brief, individualized therapeutic approach has been informed by our dignity work, and specifically designed for application in patients nearing death.

  14. Effect of end-of-life care education using humanistic approach in Korea.

    PubMed

    Jo, Kae-Hwa; An, Gyeong-Ju

    2015-01-01

    The essential concept of hospice and palliative care nursing is a humanistic approach to patient care. The purpose of this study was to examine the effects of a humanistic end-of-life care course on South Korean undergraduate nursing students' attitudes toward death, death anxiety, and communication skills. A nonequivalent control group design was used. Thirty-nine students from two universities were allocated to the control (n = 20) and experimental (n = 19) groups. Participants in the experimental group were enrolled in an end-of-life care course that utilized humanistic approach two hours per week for 16 weeks. The data were analyzed using the SPSS WIN 17.0. Attitudes toward death and communication skills in the experimental group were found to have increased compared with those of the control group. In conclusion, the humanistic end-of-life care course is effective in reducing negative attitudes toward death and increasing the communication skills of Korean nursing students. PMID:26285413

  15. Effect of end-of-life care education using humanistic approach in Korea.

    PubMed

    Jo, Kae-Hwa; An, Gyeong-Ju

    2015-01-01

    The essential concept of hospice and palliative care nursing is a humanistic approach to patient care. The purpose of this study was to examine the effects of a humanistic end-of-life care course on South Korean undergraduate nursing students' attitudes toward death, death anxiety, and communication skills. A nonequivalent control group design was used. Thirty-nine students from two universities were allocated to the control (n = 20) and experimental (n = 19) groups. Participants in the experimental group were enrolled in an end-of-life care course that utilized humanistic approach two hours per week for 16 weeks. The data were analyzed using the SPSS WIN 17.0. Attitudes toward death and communication skills in the experimental group were found to have increased compared with those of the control group. In conclusion, the humanistic end-of-life care course is effective in reducing negative attitudes toward death and increasing the communication skills of Korean nursing students.

  16. The important role for nurses in supporting the Asian Hindu patient and family at end of life: providing culturally sensitive end-of-life care.

    PubMed

    Singh, Anuradha; Freeman, Michelle

    2011-01-01

    As cultural ecology of Canada evolves with daily arrival of new immigrants, Canadians welcome them and feel very proud of preserving their multicultural heritage. As minority groups, especially South Asian Hindus, continue to grow, there is a need to understand their cultural perspectives and accommodate their cultural preferences for end-of-life care. This article addresses end-of-life care from a point of view of Hindu culture and religion and provides a brief overview of their beliefs and rituals related to it. This article also guides nurses to understand diverse Hindu cultural practices and beliefs to help support their patients and families at this difficult time of life. PMID:21462877

  17. An appraisal of ethical issues in end-of-life care.

    PubMed

    Ilemona, Ekore Rabi

    2014-01-01

    Caring for patients at the end-of-life period could involve a number of situations and incidents that pose moral dilemma for both the health workers and the patients' family members or loved ones. Some of these issues include shared decision-making, the right to refuse medical treatment, medical futility, and euthanasia versus assisted suicide, information disclosure (truth-telling), substitute decision-making, and confidentiality. They may seem improbable or remote, until one is confronted with them real-time. Providing good care for dying patients requires that physicians and other members of the health care team be knowledgeable of ethical issues pertinent to end-of-life care.

  18. Medical education in end-of-life care: the status of reform.

    PubMed

    Block, Susan D

    2002-04-01

    Deficiencies in education about end-of-life care are widely recognized, both in the "formal" or structured curriculum, and in the "informal" curriculum (the culture in which students are immersed as they learn medicine). Numerous approaches to addressing these deficiencies have been identified. These approaches include developing palliative care leaders; improving curricula; creating standards and a process for certification of competence; creating and enhancing educational resources for end-of-life education; faculty development; growing palliative care clinical programs as venues for education; textbook revision; and creating palliative care fellowship training opportunities. Current efforts in these areas are reviewed, and barriers to their implementation are highlighted. PMID:12006224

  19. End-of-life care in an acute care hospital: linking policy and practice.

    PubMed

    Sorensen, Ros; Iedema, Rick

    2011-07-01

    The care of people who die in hospitals is often suboptimal. Involving patients in decisions about their care is seen as one way to improve care outcomes. Federal and state government policymakers in Australia are promoting shared decision making in acute care hospitals as a means to improve the quality of end-of-life care. If policy is to be effective, health care professionals who provide hospital care will need to respond to its patient-centered purpose. Health services will also be called upon to train health care professionals to work with dying people in a more participatory way and to assist them to develop the clinical processes that support shared decision making. Health professionals who manage clinical workplaces become central in reshaping this practice environment by promoting patient-centered care policy objectives and restructuring health service systems to routinely incorporate patient and family preferences about care at key points in the patient's care episode.

  20. End-of-life care for people with dementia from ethnic minority groups: a systematic review.

    PubMed

    Connolly, Amanda; Sampson, Elizabeth L; Purandare, Nitin

    2012-02-01

    A systematic review of the literature was conducted to examine the relationship between ethnic minority status and provision of end-of-life care for people with dementia. It included all empirical research on people with dementia or severe cognitive impairment or their caregivers and with ethnic minority people as a subgroup in examining an outcome involving end-of-life care processes or attitudes toward end-of-life care. Two authors independently rated quality of included studies; 20 studies met eligibility criteria and were included in the review: 19 quantitative and one qualitative. All articles were based in the United States, with African American, Hispanic, and Asian groups being the ethnic minorities. Artificial nutrition and other life-sustaining treatments were more frequent and decisions to withhold treatment less common in African American and Asian groups. The qualitative evidence, albeit limited, found that attitudes toward end-of-life care were more similar than different between different ethnic groups. Differences in hospice usage patterns were less consistent and potentially influenced by factors such as study setting and dementia severity. Caregivers' experiences differed between ethnic groups, whereas levels of strain experienced were similar. Disparities in end-of-life care for people with dementia from ethnic minority groups appear to exist and may be due to the double disadvantage of dementia and ethnic minority status. Further research is needed in other western multicultural countries, with a focus on prospective qualitative studies to understand the underlying reasons for these differences, not just their occurrence.

  1. Community nursing quality indicators for end-of-life care in England: identification, preparation, and coordination.

    PubMed

    Cook, Jane; Horrocks, Susan

    2016-03-01

    High-quality community nursing is essential to ensure that end-of-life care can be provided in community settings in line with patient preferences. This article examines the quality priorities commissioners sought to incentivise in end-of-life care, by reviewing a survey of Commissioning for Quality and Innovation (CQUIN) indicators for community nursing conducted in England in 2014-2015. Findings from the survey suggest that end-of-life care was not given a high priority with the CQUIN indicators for community nursing. Vigorous quality standards, including training and development, need to be in place to make sure that the potential of community nursing is being used to sensitively engage with people nearing the end of their lives and support them to plan their future care, if they so wish. PMID:26940613

  2. Concerns about end-of-life care and support for euthanasia.

    PubMed

    Givens, Jane L; Mitchell, Susan L

    2009-08-01

    Popular support for euthanasia is known to vary according to sociodemographic characteristics. However, little is known about whether support is associated with concerns regarding the emotional, physical, and economic burdens of end-of-life care. This study used data from the 1998 General Social Survey, a national survey of community-dwelling adults. The outcome variable assessed the respondents' support for a doctor's right to end life in the setting of terminal illness. Independent variables assessed the following concerns: 1) concern about the emotional burden of end-of-life decision making for family members; 2) worry about the economic burden of terminal illness; 3) concern about pain at the end of life; 4) worry that lack of money or insurance will result in second-class end-of-life care; and 5) belief that their religious community will be helpful at the end of life. Multivariable logistic regression estimated the independent effect of these concerns on support for euthanasia, adjusting for sociodemographic characteristics. Of 786 respondents, 70.6% approved of euthanasia in the setting of terminal illness. In adjusted analyses, respondents with concerns about the emotional toll of decision making on family members, economic burden, and poor health care because of lack of insurance were significantly more likely to support euthanasia. Respondents with faith in the helpfulness of their religious community were less likely to support euthanasia. In conclusion, emotional and economic concerns about end-of-life care were associated with support for the right to euthanasia. Future work can evaluate whether alleviating these concerns may reduce the perceived desire for euthanasia by patients near the end of life.

  3. Nurse Executives' Perceptions of End-of-Life Care Provided in Hospitals

    PubMed Central

    Garner, Kimberly K.; Goodwin, Julia A.; McSweeney, Jean C.; Kirchner, JoAnn E.

    2012-01-01

    Context With the aging of our population, almost one in five adults, or 19% of the population, will be over the age of 65 years by 2030. Many persons have expressed concern about the inadequate preparation of hospitals to provide high value end-of-life care for the current and anticipated population of older adults. Objectives The purpose of this study was to explore the perceptions of nurse executives about the provision of end-of-life care in the hospital setting. Methods We conducted a pilot, descriptive, naturalistic, qualitative study using in-person interviews to capture nurse executives’ understandings, beliefs and perceptions of end-of-life care in their facilities. Results Data were collected from 10 nurse executives. We identified five major factors, three barriers and two facilitators, in their descriptions of provision of end-of-life care provided in the hospital: 1) communication inadequacies, 2) education inadequacies, 3) hospital system constraints, 4) hospice services availability, and 5) nurse executive advocacy. Conclusion These findings highlight the need for interventions that focus on improving communication at the bedside and in transitions of care, enhancing educational interventions, and developing patient-centered care systems, which translate into a higher quality end-of-life experience for patients and their family members. Nurse executives are currently an underutilized resource in end-of-life care but are poised to be able to champion innovative models and a culture of change that integrates high-value care for patients with serious and chronic illnesses. PMID:22926091

  4. Electronic end-of-life care registry: the Utah ePOLST initiative.

    PubMed

    Duncan, Jeffrey; Taillac, Peter; Nangle, Barry; Henry, Maureen; Houston, Janice; Talebreza, Shaida; Finch, Leisa; Brunker, Cherie; Rajeev, Deepthi; Smith, Heidi J; North, Christie

    2013-01-01

    As a patient's end-of-life approaches, it is typical for the disease to be the focus of treatment instead of the dying patient. There is limited congruence between the care preferred by patients and the treatment actually delivered to patients during their end-of-life. The Physician Orders for Life-Sustaining Treatment Paradigm has been endorsed or is in development in all but three states and the District of Columbia in an effort to ensure that patients are provided with adequate opportunities to specify their end-of-life care preferences. However, most states are using paper forms to document these preferences which may be inaccessible when needed. We have developed an electronic end-of-life care registry that allows authorized users to store and retrieve information pertaining to patients' end-of-life care preferences. In this paper, we describe (a) the requirements identified for the registry from the users' perspective and (b) the design and development of the electronic registry. PMID:24551342

  5. Electronic End-of-Life Care Registry: the Utah ePOLST Initiative

    PubMed Central

    Duncan, Jeffrey; Taillac, Peter; Nangle, Barry; Henry, Maureen; Houston, Janice; Talebreza, Shaida; Finch, Leisa; Brunker, Cherie; Rajeev, Deepthi; Smith, Heidi J.; North, Christie

    2013-01-01

    As a patient’s end-of-life approaches, it is typical for the disease to be the focus of treatment instead of the dying patient. There is limited congruence between the care preferred by patients and the treatment actually delivered to patients during their end-of-life. The Physician Orders for Life-Sustaining Treatment Paradigm has been endorsed or is in development in all but three states and the District of Columbia in an effort to ensure that patients are provided with adequate opportunities to specify their end-of-life care preferences. However, most states are using paper forms to document these preferences which may be inaccessible when needed. We have developed an electronic end-of-life care registry that allows authorized users to store and retrieve information pertaining to patients’ end-of-life care preferences. In this paper, we describe (a) the requirements identified for the registry from the users’ perspective and (b) the design and development of the electronic registry. PMID:24551342

  6. End-of-life care beliefs among Hindu physicians in the United States.

    PubMed

    Ramalingam, Vijaya Sivalingam; Saeed, Fahad; Sinnakirouchenan, Ramapriya; Holley, Jean L; Srinivasan, Sinnakirouchenan

    2015-02-01

    Several studies from the United States and Europe showed that physicians' religiosity is associated with their approach to end-of-life care beliefs. No such studies have focused exclusively on Hindu physicians practicing in the United States. A 34-item questionnaire was sent to 293 Hindu physicians in the United States. Most participants believed that their religious beliefs do not influence their practice of medicine and do not interfere with withdrawal of life support. The US practice of discussing end-of-life issues with the patient, rather than primarily with the family, seems to have been adopted by Hindu physicians practicing in the United States. It is likely that the ethical, cultural, and patient-centered environment of US health care has influenced the practice of end-of-life care by Hindu physicians in this country. PMID:24052431

  7. LGBT people's knowledge of and preparedness to discuss end-of-life care planning options.

    PubMed

    Hughes, Mark; Cartwright, Colleen

    2014-09-01

    Despite the devastating impact of HIV/AIDS, end-of-life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under-researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end-of-life care. The focus of this paper is their preparedness to discuss with healthcare providers any end-of-life care plans. The results highlight that while the majority of respondents were aware of three of the four key end-of-life care planning options available in New South Wales--enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives)--a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end-of-life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end-of-life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients.

  8. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care.

    ERIC Educational Resources Information Center

    American Association of Colleges of Nursing, Washington, DC.

    A group of health care ethicists and palliative care experts convened by the American Association of Colleges of Nursing developed a set of competencies that should be achieved through nursing curricula. The purpose of the 15 competency statements is to assist nurse educators in incorporating end-of-life content into nursing curricula. Every…

  9. Hospice in Assisted Living: Promoting Good Quality Care at End of Life

    ERIC Educational Resources Information Center

    Cartwright, Juliana C.; Miller, Lois; Volpin, Miriam

    2009-01-01

    Purpose: The purpose of this study was to describe good quality care at the end of life (EOL) for hospice-enrolled residents in assisted living facilities (ALFs). Design and Methods: A qualitative descriptive design was used to obtain detailed descriptions of EOL care provided by ALF medication aides, caregivers, nurses, and hospice nurses in…

  10. The Allied Health Care Professional's Role in Assisting Medical Decision Making at the End of Life

    ERIC Educational Resources Information Center

    Lambert, Heather

    2012-01-01

    As a patient approaches the end of life, he or she faces a number of very difficult medical decisions. Allied health care professionals, including speech-language pathologists (SLPs) and occupational therapists (OTs), can be instrumental in assisting their patients to make advance care plans, although their traditional job descriptions do not…

  11. Training Providers and Patients to Talk about End-of-Life Care | Division of Cancer Prevention

    Cancer.gov

    It has been observed and documented widely; most doctors and patients do not want to talk about death and dying. But failing to discuss transitions of care—from active cancer treatment to end-of-life care once treatment options have been exhausted—can leave doctors unsure of what a patient truly wants at the end of his or her life. And failing to receive end-of-life care in line with their values and wishes can cause both patients and their families great distress. |

  12. Completing the circle: elders speak about end-of-life care with aboriginal families in Canada.

    PubMed

    Hampton, Mary; Baydala, Angelina; Bourassa, Carrie; McKay-McNabb, Kim; Placsko, Cheryl; Goodwill, Ken; McKenna, Betty; McNabb, Pat; Boekelder, Roxanne

    2010-01-01

    In this article, we share words spoken by Aboriginal elders from Saskatchewan, Canada, in response to the research question, "What would you like non-Aboriginal health care providers to know when providing end-of-life care for Aboriginal families?" Our purpose in publishing these results in a written format is to place information shared by oral tradition in an academic context and to make the information accessible to other researchers. Recent theoretical work in the areas of death and dying suggests that cultural beliefs and practices are particularly influential at the end of life; however, little work describing the traditional beliefs and practices of Aboriginal peoples in Canada exists to guide culturally appropriate end-of-life care delivery. Purposive sampling procedures were used to recruit five elders from culturally diverse First Nations in southern Saskatchewan. Key informant Aboriginal elder participants were videotaped by two Aboriginal research assistants, who approached the elders at powwows. Narrative analysis of the key informant interview transcripts was conducted to identify key concepts and emerging narrative themes describing culturally appropriate end-of-life health care for Aboriginal families. Six themes were identified to organize the data into a coherent narrative: realization; gathering of community; care and comfort/transition; moments after death; grief, wake, funeral; and messages to health care providers. These themes told the story of the dying person's journey and highlighted important messages from elders to non-Aboriginal health care providers.

  13. End-of-life care as a field of practice in the social work curriculum.

    PubMed

    Murty, Susan Alsop; Sanders, Sara; Stensland, Meredith

    2015-01-01

    Attention to end-of-life care in social work education and practice is growing. With funding from the Project on Death in America, in 2001, the University of Iowa, School of Social Work developed and implemented an End-of-Life Field of Practice. Unlike a concentration, a Field of Practice is a set of integrated courses focused on one specific area of focus. This article describes the Field of Practice, the community-based partnerships, and the curriculum that serves as a basis for training the students enrolled in this area. Strategies for other social work programs interested in developing a similar Field of Practice or specialty area in their MSW curricula are provided. These include faculty committed to the content area, comprehensive course offerings to encompass all aspects of end-of-life care, and field sites willing to help train students.

  14. Tolstoy, stories, and facilitating insight in end of life care: exploring ethics through vicarious experience.

    PubMed

    Begley, Ann Marie; Glackin, Marie; Henry, Richard

    2011-07-01

    Facilitating moral insight in end of life care can be challenging, and the purpose of this paper is to illustrate how this can be nurtured by means of creative literature. Tolstoy's Death of Ivan Ilych is presented as an example of such literature. Aristotle's Nichomean Ethics provides the philosophical underpinning for the method used. Sources also include the nursing literature, and students' evaluations of the impact of Tolstoy's novella on their ability to perceive the ethical issues arising in end of life care. Comments from evaluations were analysed and significant themes emerged. Students' comments clearly support the suggestion that use of this novella has facilitated insight into ethical issues at the end of life. Evaluations also indicate that vicarious experience gained through reading this novella has helped to nurture sensitivity and professional insight into the importance of compassion and offering 'comfort' to the dying person. PMID:20974506

  15. The dialectics of care: communicative choices at the end of life.

    PubMed

    Considine, Jennifer; Miller, Katherine

    2010-03-01

    Communication at the end of life poses important challenges for patients, families, and caregivers. Previous research on end-of-life communication has concentrated on areas including the provision of bad news and clinical and personal decision making. In this study, we turn our attention to the processes through which caregivers provide comfort in palliative care. Our ethnographic and interview study of spiritual communication among hospice workers and their patients is guided by a dialectical framework. We find a central dialectic in which hospice workers recognize the tension between "leading" and "following" patients and families in discussions of spirituality at the end of life. Our analysis reveals that though some care providers choose one pole of this dialectic, most workers try to manage the dialectic by shifting between leading and following in different situations or different points in time or by transcending the dialectic and addressing the multiple goals of interaction.

  16. The dialectics of care: communicative choices at the end of life.

    PubMed

    Considine, Jennifer; Miller, Katherine

    2010-03-01

    Communication at the end of life poses important challenges for patients, families, and caregivers. Previous research on end-of-life communication has concentrated on areas including the provision of bad news and clinical and personal decision making. In this study, we turn our attention to the processes through which caregivers provide comfort in palliative care. Our ethnographic and interview study of spiritual communication among hospice workers and their patients is guided by a dialectical framework. We find a central dialectic in which hospice workers recognize the tension between "leading" and "following" patients and families in discussions of spirituality at the end of life. Our analysis reveals that though some care providers choose one pole of this dialectic, most workers try to manage the dialectic by shifting between leading and following in different situations or different points in time or by transcending the dialectic and addressing the multiple goals of interaction. PMID:20390682

  17. End-of-life care as a field of practice in the social work curriculum.

    PubMed

    Murty, Susan Alsop; Sanders, Sara; Stensland, Meredith

    2015-01-01

    Attention to end-of-life care in social work education and practice is growing. With funding from the Project on Death in America, in 2001, the University of Iowa, School of Social Work developed and implemented an End-of-Life Field of Practice. Unlike a concentration, a Field of Practice is a set of integrated courses focused on one specific area of focus. This article describes the Field of Practice, the community-based partnerships, and the curriculum that serves as a basis for training the students enrolled in this area. Strategies for other social work programs interested in developing a similar Field of Practice or specialty area in their MSW curricula are provided. These include faculty committed to the content area, comprehensive course offerings to encompass all aspects of end-of-life care, and field sites willing to help train students. PMID:25869145

  18. Characteristics of Prison Hospice Patients: Medical History, Hospice Care, and End-of-Life Symptom Prevalence.

    PubMed

    Cloyes, Kristin G; Berry, Patricia H; Martz, Kim; Supiano, Katherine

    2015-07-01

    Increasing numbers of prisoners in the United States are dying from age-related and chronic illnesses while incarcerated. This study is among the first to document characteristics of a population of prison hospice patients. Retrospective review of medical records for all patients admitted to the Louisiana State Penitentiary prison hospice program between January 1, 2004, and May 31, 2012 (N = 79) examined demographics, medical history, hospice diagnosis, length of stay, and end-of-life symptom prevalence on admission and during final 72 hours before death. Resulting data were contrasted with community-based end-of-life care study data, demonstrating a unique clinical profile of this group. As prisons consider adopting programs to meet the growing need for inmate end-of-life care, more research concerning the particular characteristics and unique needs of prison hospice patients will inform these efforts.

  19. Family members’ perceptions of end-of-life care across diverse locations of care

    PubMed Central

    2013-01-01

    Background The goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life. Methods A previously validated instrument was used in a telephone survey with bereaved family members (n=90) of patients who died within an organization in British Columbia. Results Bereaved family members had many unmet needs for information about the patient’s changing condition, the process of dying, how symptoms would be managed and what to do at the time of death. In addition, many bereaved relatives felt that the patient or resident had an unmet need for emotional support and that their own emotional needs were not addressed adequately. The last place of care had the most significant effect on all of these variables, with acute care and residential care having the most unmet needs. Hospice had the fewest unmet needs, followed by the palliative and the intensive care units. Conclusions We discuss these findings in relation to overall satisfaction with care, focus on individual, ethno-cultural and diversity issues, information and decision-making, symptom management and attending to the family. We conclude by offering possible practices address the end-of-life needs of patients and family members. PMID:23870101

  20. End-of-Life Care for Undocumented Immigrants With Advanced Cancer: Documenting the Undocumented.

    PubMed

    Jaramillo, Sylvia; Hui, David

    2016-04-01

    There are approximately 11.1 million undocumented immigrants in the United States, with a majority being Latino. Cancer is now the leading cause of death in Latinos. There is little research guiding providers on how to deliver optimal end-of-life care in this population. We describe a case of an undocumented Latino patient with advanced cancer, and provide a review of the literature on end-of-life care in undocumented immigrants. Our patient encountered many challenges as he navigated through the healthcare system in the last months of life. These included delayed diagnosis, limited social support, financial issues, fear of deportation, and language and cultural barriers, which resulted in significant physical and psychological distress. Within the undocumented patient population, there is often a lack of advance care planning, prognostic understanding, mistrust, religious practices, and cultural beliefs that may affect decision making. Given the growing number of undocumented immigrants in the United States, it is important for clinicians and policy makers to have a better understanding of the issues surrounding end-of-life care for undocumented immigrants, and work together to improve the quality of life and quality of end-of-life care for these disadvantaged individuals.

  1. The Social Stratification of Older Adults' Preparations for End-of-Life Health Care

    ERIC Educational Resources Information Center

    Carr, Deborah

    2012-01-01

    I use data from the Wisconsin Longitudinal Study (n = 4,971) to evaluate the extent to which socioeconomic status affects three health-related (living will, durable power of attorney for health care, and discussions) and one financial (will) component of end-of-life planning. Net worth is positively associated with all four types of planning,…

  2. Planning for End-of-Life Care: Findings from the Canadian Study of Health and Aging

    ERIC Educational Resources Information Center

    Garrett, Douglas D.; Tuokko, Holly; Stajduhar, Kelli I.; Lindsay, Joan; Buehler, Sharon

    2008-01-01

    Steps involved in formalizing end-of-life care preferences and factors related to these steps are unclear in the literature. Using data from the third wave of the Canadian Study of Health and Aging (CSHA-3), we examined the relations between demographic and health predictors, on the one hand, and three outcomes, on the other (whether participants…

  3. Excellence in Teaching End-of-Life Care. A New Multimedia Toolkit for Nurse Educators.

    ERIC Educational Resources Information Center

    Wilkie, Diana J.; Judge, Kay M.; Wells, Marjorie J.; Berkley, Ila Meredith

    2001-01-01

    Describes a multimedia toolkit for teaching palliative care in nursing, which contains modules on end-of-life topics: comfort, connections, ethics, grief, impact, and well-being. Other contents include myths, definitions, pre- and postassessments, teaching materials, case studies, learning activities, and resources. (SK)

  4. Planning and Providing End-of-life Care in Rural Areas

    ERIC Educational Resources Information Center

    Wilson, Donna M.; Justice, Christopher; Sheps, Sam; Thomas, Roger; Reid, Pam; Leibovici, Karen

    2006-01-01

    Context: Approximately 20% of North Americans and 25% of Europeans reside in rural areas. Planning and providing end-of-life (EOL) care in rural areas presents some unique challenges. Purpose: In order to understand these challenges, and other important issues or circumstances, a literature search was conducted to assess the state of science on…

  5. End-of-Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

    ERIC Educational Resources Information Center

    Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

    2011-01-01

    Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative…

  6. The ethics of end-of-life care for prison inmates.

    PubMed

    Cohn, F

    1999-01-01

    Author contends that the philosophical arguments involving the value of persons, social contract theory, the definition of justice, the notion of just desserts, and a utilitarian calculus of societal benefits and burdens provide support for an ethical imperative to provide end-of-life care to dying prisoners. PMID:11067602

  7. Rural-Urban Differences in End-of-Life Nursing Home Care: Facility and Environmental Factors

    ERIC Educational Resources Information Center

    Temkin-Greener, Helena; Zheng, Nan Tracy; Mukamel, Dana B.

    2012-01-01

    Purpose of the study: This study examines urban-rural differences in end-of-life (EOL) quality of care provided to nursing home (NH) residents. Data and Methods: We constructed 3 risk-adjusted EOL quality measures (QMs) for long-term decedent residents: in-hospital death, hospice referral before death, and presence of severe pain. We used…

  8. Integrating end-of-life care with disease management programs: a new role for case managers.

    PubMed

    Lazarus, A

    2001-03-01

    Case managers are crucial to any well-designed disease management program. However, in the progressive course of serious illness, patients, their families, and MCOs need the skills of case manager more than ever to help them through end-of-life care choices. The author describes what case managers will need in their "toolbox" to provide insight to these health plan members.

  9. A Framework for Categorizing Social Interactions Related to End-of-Life Care in Nursing Homes

    ERIC Educational Resources Information Center

    Bern-Klug, Mercedes

    2009-01-01

    Purpose: Almost half of people age 85 and older who die annually in the United States die as nursing home residents, yet because it is not always clear who is close to death, not all residents who might benefit from end-of-life care receive it. The purpose of this study is to develop a framework for organizing social interactions related to…

  10. Family Perspectives on End-of-Life Care Experiences in Nursing Homes

    ERIC Educational Resources Information Center

    Wetle, Terrie; Shield, Renee; Teno, Joan; Miller, Susan C.; Welch, Lisa

    2005-01-01

    Purpose: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. Design and Methods: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578…

  11. Measuring Experience With End-of-Life Care: A Systematic Literature Review

    PubMed Central

    Lendon, Jessica Penn; Ahluwalia, Sangeeta C.; Walling, Anne M.; Lorenz, Karl A.; Oluwatola, Oluwatobi A.; Price, Rebecca Anhang; Quigley, Denise; Teno, Joan M.

    2016-01-01

    Context Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members’ or caregivers’ experiences of care. Objectives To evaluate the instruments currently in use to inform next steps for research and policy in this area. Methods We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS® for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed. Results We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated. Conclusion This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings. PMID:25543110

  12. The attitudes of social work students toward end-of-life care planning.

    PubMed

    Kwon, Sung Ae; Kolomer, Stacey; Alper, Jamie

    2014-01-01

    This study examined the attitudes of social work students toward end-of-life care planning, as well as their degree of willingness to engage in this area of social work practice. Factors associated with their attitudes were measured through structured surveys completed by 102 social work students (N = 102) at a school of social work in the southeast. Results indicated that these social work students tended to have positive attitudes toward end-of-life care planning in general. Moreover, these attitudes were positively associated with preference for pain relief treatment, higher levels of comfort when discussing death, more emphasis on self-determination, and apprehension of conflicts of self-determination. The results of this study underscored the increased societal need for recognition of personal preferences in end-of-life care, higher levels of comfort when discussing death, and an increased commitment of social workers' to maintaining the ethical principle of the client's right to self-determination in end-of-life planning. While this is not surprising, it points to a continuing need to re-assess where the field stands in its preparation of social work professionals who will work closely with people who are dying and their families.

  13. Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis

    PubMed Central

    Maio, Laura; Rait, Greta; Iliffe, Steve

    2014-01-01

    Background: People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care. Aim: We explored what quality end-of-life care for dementia is from the perspective of family carers. Design: A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council. Data sources: Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken. Results: Eight studies were included. There was an overarching theme of ‘A family’s belief of death and their choice of treatment’. Three further themes were then identified to explain family carers’ beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers’ ability to think about death and dying. Conclusion: It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this. PMID:24625567

  14. Hospice family members’ perceptions and experiences with end-of-life care in the nursing home

    PubMed Central

    Washington, Karla; Kruse, Robin L.; Albright, David L; Lewis, Alexandria; Demiris, George

    2014-01-01

    Objective Despite the fact that more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had two research questions; 1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared to family members of community dwelling hospice patients? 2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting? Methods This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family member of hospice patients residing in the community. Results Outcome measures for family members of nursing home residents were compared (n=176) with family members of community dwelling hospice patients (n=267). The family members of nursing home residents reported higher quality of life however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for

  15. Speaking to the deceased child: Australian health professional perspectives in paediatric end-of-life care.

    PubMed

    Forster, Elizabeth M; Windsor, Carol

    2014-10-01

    Supporting a dying child and family surrounding the child's death is one of the most significant and challenging roles undertaken by health professionals in paediatric end-of-life care. An Australian study of parent and health-professional constructions of meanings around post-mortem care and communication revealed the practice of health professionals speaking to a child after death. This practice conveyed respect for the personhood of the deceased child, recognised the presence of the deceased child, and assisted in involving parents in their child's post-mortem care. Such findings illuminate an area of end-of-life-care practice that is not often addressed. Talking to a deceased child appeared to be a socially symbolic practice that may promote a continued bond between parent and child.

  16. Palliative and end-of-life decision-making in dementia care.

    PubMed

    Mitchell, Gary

    2015-11-01

    This paper will highlight some of the pertinent issues associated with palliative and end-of-life decision-making in relation to dementia. To achieve this, the author will consider why there is disparity in relation to shared decision-making practices across non-malignant disease through exploration of models of disease trajectories. The author will then go on to highlight how people living with dementia, a non-malignant disease, have a human right to receive palliative care and be an active agent in the shared decision-making process about their future and care preferences. The challenges of shared decision-making in dementia care will be discussed along with some implications for nursing practice. The aim of this paper is to provide nurses, practising across all settings, with an overview of the fundamental importance of timely palliative and end-of-life shared decision-making in dementia care.

  17. An appraisal of ethical issues in end-of-life care.

    PubMed

    Ilemona, Ekore Rabi

    2014-01-01

    Caring for patients at the end-of-life period could involve a number of situations and incidents that pose moral dilemma for both the health workers and the patients' family members or loved ones. Some of these issues include shared decision-making, the right to refuse medical treatment, medical futility, and euthanasia versus assisted suicide, information disclosure (truth-telling), substitute decision-making, and confidentiality. They may seem improbable or remote, until one is confronted with them real-time. Providing good care for dying patients requires that physicians and other members of the health care team be knowledgeable of ethical issues pertinent to end-of-life care. PMID:25470866

  18. An appraisal of ethical issues in end-of-life care.

    PubMed

    Ilemona, Ekore Rabi

    2014-01-01

    Caring for patients at the end-of-life period could involve a number of situations and incidents that pose moral dilemma for both the health workers and the patients' family members or loved ones. Some of these issues include shared decision-making, the right to refuse medical treatment, medical futility, and euthanasia versus assisted suicide, information disclosure (truth-telling), substitute decision-making, and confidentiality. They may seem improbable or remote, until one is confronted with them real-time. Providing good care for dying patients requires that physicians and other members of the health care team be knowledgeable of ethical issues pertinent to end-of-life care. PMID:25508493

  19. End of life in the intensive care unit: should French law be adapted?

    PubMed Central

    2014-01-01

    Background Longstanding concerns regarding end of life in the ICU led in France to the publication of guidelines, updated in 2009, that take into account the insights provided by a recent law (Leonetti’s law) regarding patients’ rights. After the French President asked a specific expert to review end of life issues, the French Intensive Care Society (SRLF) surveyed their members (doctors and paramedics) about various aspects of end of life in the ICU. Methods SRLF members were invited to respond to a questionnaire, sent by Email, designed to assess their knowledge of Leonetti’s law and to determine how many caregivers would agree with the authorization of lethal drug administration in selected end of life situations. Results Questionnaires returned by 616 (23%) of 2,700 members were analyzed. Most members (82.5%) reported that they had a good knowledge of Leonetti’s law, which most (88%) said they have often applied. One third of respondents had received ‘assisted death’ requests from patients and more than 50% from patients’ relatives. One quarter of respondents had experienced the wish to give lethal drugs to end of life patients. Assuming that palliative care in the ICU is well-managed, 25.7% of the respondents would approve a law authorizing euthanasia, while 26.5% would not. Answers were influenced by the fear of a possible risk of abuse. Doctors and nurses answered differently. Conclusion ICU caregivers appear to be well acquainted with Leonetti’s law. Nevertheless, in selected clinical situations with suitable palliative care, one quarter of respondents were in favor of a law authorizing administration of lethal drugs to patients. PMID:24568144

  20. Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care.

    PubMed

    Thieleman, Kara J; Wallace, Cara; Cimino, Andrea N; Rueda, Heidi A

    2016-01-01

    The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective. PMID:27462957

  1. Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care.

    PubMed

    Thieleman, Kara J; Wallace, Cara; Cimino, Andrea N; Rueda, Heidi A

    2016-01-01

    The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.

  2. [Attitudes towards patient care at the end of life. A survey of directors of neurological departments].

    PubMed

    Borasio, G D; Weltermann, B; Voltz, R; Reichmann, H; Zierz, S

    2004-12-01

    In view of the increasing importance of palliative medicine and end-of-life care of neurological patients, a survey from the American Academy of Neurology was translated in a validated fashion and sent to all medical directors of neurological departments in Germany. The topics of the survey comprised-based on clinical scenarios-the withdrawal or withholding of life-sustaining measures, physician-assisted suicide (PAS) and euthanasia, advance directives and health care proxies, principles of palliative care, and ethical and legal questions in end-of-life care. Of 411 directors of departments, 152 participated in the survey. Almost all respondents support a patient's right to refuse life-sustaining treatment. Thirty-two percent think it is illegal to administer analgesics in doses that risk respiratory depression. Forty-five percent believe that treating terminal dyspnea with morphine is the same as euthanasia. Despite the fact that 88% of the respondents regard advance directives as helpful, only an average of 4% of their patients have completed one. About one third of the respondents have been confronted with a request by patients for PAS or euthanasia. Thirty-five percent believe that PAS should be made explicitly legal for terminally ill patients. Forty-six percent of the respondents believe that their training in end-of-life care was insufficient, and 91% express interest in education programs on palliative care. PMID:15221065

  3. Managing the emotional aspects of end of life care for children and young people.

    PubMed

    Pearson, Helen

    2010-09-01

    Caring for a child at the end of life stage is one of the greatest challenges a nurse can encounter in practice. The way professionals help support, maintain and give comfort to the child and his or her family helps shape the experience the young patient is about to face. Whatever the stage of your nursing career it is likely you will provide end of life care to a child or young person and their family. This article is designed to help enable professionals to cope emotionally and provide the best quality of care in an emotionally charged situation. The information contained may be used as a guidance tool through is challenging and difficult time.

  4. Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care.

    PubMed

    Duffy, Sonia A; Jackson, Frances C; Schim, Stephanie M; Ronis, David L; Fowler, Karen E

    2006-01-01

    This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age+/-standard deviation was 67+/-8.5 (range 50-83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues. Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient "bad news." Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying. As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately.

  5. Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care.

    PubMed

    Duffy, Sonia A; Jackson, Frances C; Schim, Stephanie M; Ronis, David L; Fowler, Karen E

    2006-01-01

    This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age+/-standard deviation was 67+/-8.5 (range 50-83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues. Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient "bad news." Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying. As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately. PMID:16420213

  6. A Literature Review on Care at the End-of-Life in the Emergency Department

    PubMed Central

    Forero, Roberto; McDonnell, Geoff; Gallego, Blanca; McCarthy, Sally; Mohsin, Mohammed; Shanley, Chris; Formby, Frank; Hillman, Ken

    2012-01-01

    The hospitalisation and management of patients at the end-of-life by emergency medical services is presenting a challenge to our society as the majority of people approaching death explicitly state that they want to die at home and the transition from acute care to palliation is difficult. In addition, the escalating costs of providing care at the end-of-life in acute hospitals are unsustainable. Hospitals in general and emergency departments in particular cannot always provide the best care for patients approaching end-of-life. The main objectives of this paper are to review the existing literature in order to assess the evidence for managing patients dying in the emergency department, and to identify areas of improvement such as supporting different models of care and evaluating those models with health services research. The paper identified six main areas where there is lack of research and/or suboptimal policy implementation. These include uncertainty of treatment in the emergency department; quality of life issues, costs, ethical and social issues, interaction between ED and other health services, and strategies for out of hospital care. The paper concludes with some areas for policy development and future research. PMID:22500239

  7. End-of-life care ethical decision-making: Shiite scholars' views.

    PubMed

    Mobasher, Mina; Aramesh, Kiarash; Zahedi, Farzaneh; Nakhaee, Nouzar; Tahmasebi, Mamak; Larijani, Bagher

    2014-01-01

    Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars' views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, and was analyzed through deductive content analysis. Analysis revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria ('urf) such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts (as a sign that the soul has control over the body and the faculty of thinking) are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient's autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients' care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God's will, boundaries of man's authority, and the physician's ethical duties and obligations should be developed.

  8. General principles and approaches to wound prevention and care at end of life: an overview .

    PubMed

    Langemo, Diane

    2012-05-01

    The incidence and prevalence of wounds in persons at the end of life is largely unknown, but wounds are estimated to occur in at least one third of hospice patients. At the end of life, healthcare professionals must help the patient and/ or family decide whether the goals of wound prevention and care should focus on healing or palliation. At all times, it is important to consider that a palliative approach does not negate the potential for wound improvement or even closing before death. A review of the literature suggests that, in general, few differences exist between the general principles of wound prevention and care and an optimal palliative care plan. For example, maintenance of a moist wound environment is recommended to facilitate healing in general protocols of care. In end-of-life patients, dressings should be used for general comfort and prevention of skin exposure to wound exudate and to reduce the number of potentially painful dressing changes. Risk factors for tissue breakdown and pressure ulcer development are also similar. Palliative care patients with limited mobility and physical activity are at highest risk for developing pressure ulcers, but measures to help prevent these wounds may have to be adjusted to meet the overall goals of palliative care for a particular patient. Wounds encountered mainly in cancer patients - eg, fungating and radiation wounds - can pose important challenges for healthcare professionals and are very stressful for the patient. Pressure ulcers, fungating, and radiation wounds at the end of life are to be managed palliatively with the overall goal to minimize pain and odor, enhance comfort, and potentially improve the condition of the ulcer. Although research remains limited, it is clear the clinician and patient must balance best wound prevention and management practices while promoting patient dignity, self-esteem, and quality of life.

  9. End-of-life care ethical decision-making: Shiite scholars’ views

    PubMed Central

    Mobasher, Mina; Aramesh, Kiarash; Zahedi, Farzaneh; Nakhaee, Nouzar; Tahmasebi, Mamak; Larijani, Bagher

    2014-01-01

    Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars’ views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, and was analyzed through deductive content analysis. Analysis revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria (‘urf) such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts (as a sign that the soul has control over the body and the faculty of thinking) are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient’s autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients’ care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God’s will, boundaries of man’s authority, and the physician’s ethical duties and obligations should be developed. PMID:25512823

  10. Innovation can improve and expand aspects of end-of-life care in low- and middle-income countries.

    PubMed

    Steedman, Mark R; Hughes-Hallett, Thomas; Knaul, Felicia Marie; Knuth, Alexander; Shamieh, Omar; Darzi, Ara

    2014-09-01

    Provision for end-of-life care around the world is widely variable and often poor, which leads to millions of deaths each year among people without access to essential aspects of care. However, some low- and middle-income countries have improved specific aspects of end-of-life care using innovative strategies and approaches such as international partnerships, community-based programs, and philanthropic initiatives. This article reviews the state of current global end-of-life care and examines how innovation has improved end-of-life care in Nigeria, Uganda, India, Bangladesh, Myanmar, and Jordan. Specifically, we examine how opioids have been made more available for the treatment of pain, and how training and education programs have expanded the provision of care to the dying population. Finally, we recommend actions that policy makers and individuals can take to improve end-of-life care, regardless of the income level in a country. PMID:25201666

  11. Innovation can improve and expand aspects of end-of-life care in low- and middle-income countries.

    PubMed

    Steedman, Mark R; Hughes-Hallett, Thomas; Knaul, Felicia Marie; Knuth, Alexander; Shamieh, Omar; Darzi, Ara

    2014-09-01

    Provision for end-of-life care around the world is widely variable and often poor, which leads to millions of deaths each year among people without access to essential aspects of care. However, some low- and middle-income countries have improved specific aspects of end-of-life care using innovative strategies and approaches such as international partnerships, community-based programs, and philanthropic initiatives. This article reviews the state of current global end-of-life care and examines how innovation has improved end-of-life care in Nigeria, Uganda, India, Bangladesh, Myanmar, and Jordan. Specifically, we examine how opioids have been made more available for the treatment of pain, and how training and education programs have expanded the provision of care to the dying population. Finally, we recommend actions that policy makers and individuals can take to improve end-of-life care, regardless of the income level in a country.

  12. End-of-life care policy: An integrated care plan for the dying

    PubMed Central

    Myatra, Sheila Nainan; Salins, Naveen; Iyer, Shivakumar; Macaden, Stanley C.; Divatia, Jigeeshu V.; Muckaden, Maryann; Kulkarni, Priyadarshini; Simha, Srinagesh; Mani, Raj Kumar

    2014-01-01

    Purpose: The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process. Evidence: The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005 [1] which was later revised in 2012.[2] Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying.[3] Method: An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India. PMID:25249748

  13. Preparing the Ground: Contributions of the Preclinical Years to Medical Education for Care Near the End of Life.

    ERIC Educational Resources Information Center

    Barnard, David; Quill, Timothy; Hafferty, Frederic W.; Arnold, Robbert; Plumb, James; Bulger, Roger; Field, Marilyn

    1999-01-01

    The Working Group on the Pre-Clinical Years of the 1997 National Consensus Conference on Medical Education for Care Near the End of Life identifies promising settings and suggests how they might be used for maximum benefit in end-of-life education. Basic-care competencies are in five domains: psychological/social/cultural/spiritual issues;…

  14. Parent's Perspectives on the End-of-life Care of their Child with Cancer: Indian Perspective

    PubMed Central

    Latha, Sneha Magatha; Scott, Julius Xavier; Kumar, Satish; Kumar, Suresh M; Subramanian, Lalitha; Rajendran, Aruna

    2016-01-01

    Context: Parents report that end-of-life decisions are the most difficult treatment-related decisions that they face during their child cancer experience. Research from the parent's perspective of the quality of end-of-life care of their cancer children is scarce, particularly in developing countries like India. Aims: This study aimed to identify the symptoms (medical/social/emotional) that most concerned parents at the end-of-life care of their cancer child and to identify the strategies parents found to be helpful during this period. Settings and Design: We wanted to conduct this to focus on the parents perspectives on their cancer child's end-of-life care and to address the issues that could contribute to the comfort of the families witnessing their child's suffering. Materials and Methods: The study was conducted at Sri Ramachandra University, Chennai, a Tertiary Care Pediatric Hemato Oncology Unit. Parents who lost their child to cancer, treated in our institution were interviewed with a validated prepared questionnaire. Statistical analysis was performed using SAS statistical software package. Results: Toward death, dullness (30%), irritability (30%), and withdrawn from surroundings (10%) were the most common symptoms encountered. About 30% of the children had fear to be alone. About 50% of the children had the fear of death. Pain, fatigue, loss of appetite were the main distressful symptoms that these children suffered from parents’ perspective. Though the parents accepted that the child was treated for these symptoms, the symptom relief was seldom successful. Conclusion: The conclusion of the study was that at the end of their child's life, parents value obtaining adequate information and communication, being physically present with the child, preferred adequate pain management, social support, and empathic relationships by the health staff members. PMID:27559262

  15. End-of-life care in a cardiology department: have we improved?

    PubMed Central

    Ruiz-Garcia, Juan; Diez-Villanueva, Pablo; Ayesta, Ana; Bruña, Vanessa; Figueiras-Graillet, Lourdes M; Gallego-Parra, Laura; Fernández-Avilés, Francisco; Martínez-Sellés, Manuel

    2016-01-01

    Background End-of-life care is not usually a priority in cardiology departments. We sought to evaluate the changes in end-of-life care after the introduction of a do-not-resuscitate (DNR) order protocol. Methods & Results Retrospective analysis of all deaths in a cardiology department in two periods, before and after the introduction of the protocol. Comparison of demographic characteristics, use of DNR orders, and end-of-life care issues between both periods, according to the presence in the second period of the new DNR sheet (Group A), a conventional DNR order (Group B) or the absence of any DNR order (Group C). The number of deaths was similar in both periods (n = 198 vs. n = 197). The rate of patients dying with a DNR order increased significantly (57.1% vs. 68.5%; P = 0.02). Only 4% of patients in both periods were aware of the decision taken about cardiopulmonary resuscitation. Patients in Group A received the DNR order one day earlier, and 24.5% received it within the first 24 h of admission (vs. 2.6% in the first period; P < 0.001). All patients in Group A with an implantable cardioverter defibrillator (ICD) had shock therapies deactivated (vs. 25.0% in the first period; P = 0.02). Conclusions The introduction of a DNR order protocol may improve end-of-life care in cardiac patients by increasing the use and shortening the time of registration of DNR orders. It may also contribute to increase ICD deactivation in patients with these orders in place. However, the introduction of the sheet in late stages of the disease failed to improve patient participation.

  16. End-of-life care in a cardiology department: have we improved?

    PubMed Central

    Ruiz-Garcia, Juan; Diez-Villanueva, Pablo; Ayesta, Ana; Bruña, Vanessa; Figueiras-Graillet, Lourdes M; Gallego-Parra, Laura; Fernández-Avilés, Francisco; Martínez-Sellés, Manuel

    2016-01-01

    Background End-of-life care is not usually a priority in cardiology departments. We sought to evaluate the changes in end-of-life care after the introduction of a do-not-resuscitate (DNR) order protocol. Methods & Results Retrospective analysis of all deaths in a cardiology department in two periods, before and after the introduction of the protocol. Comparison of demographic characteristics, use of DNR orders, and end-of-life care issues between both periods, according to the presence in the second period of the new DNR sheet (Group A), a conventional DNR order (Group B) or the absence of any DNR order (Group C). The number of deaths was similar in both periods (n = 198 vs. n = 197). The rate of patients dying with a DNR order increased significantly (57.1% vs. 68.5%; P = 0.02). Only 4% of patients in both periods were aware of the decision taken about cardiopulmonary resuscitation. Patients in Group A received the DNR order one day earlier, and 24.5% received it within the first 24 h of admission (vs. 2.6% in the first period; P < 0.001). All patients in Group A with an implantable cardioverter defibrillator (ICD) had shock therapies deactivated (vs. 25.0% in the first period; P = 0.02). Conclusions The introduction of a DNR order protocol may improve end-of-life care in cardiac patients by increasing the use and shortening the time of registration of DNR orders. It may also contribute to increase ICD deactivation in patients with these orders in place. However, the introduction of the sheet in late stages of the disease failed to improve patient participation. PMID:27605939

  17. Existential loneliness and end-of-life care: A systematic review

    PubMed Central

    Derksen, Louise D.; van Leeuwen, Evert

    2010-01-01

    Patients with a life-threatening illness can be confronted with various types of loneliness, one of which is existential loneliness (EL). Since the experience of EL is extremely disruptive, the issue of EL is relevant for the practice of end-of-life care. Still, the literature on EL has generated little discussion and empirical substantiation and has never been systematically reviewed. In order to systematically review the literature, we (1) identified the existential loneliness literature; (2) established an organising framework for the review; (3) conducted a conceptual analysis of existential loneliness; and (4) discussed its relevance for end-of-life care. We found that the EL concept is profoundly unclear. Distinguishing between three dimensions of EL—as a condition, as an experience, and as a process of inner growth—leads to some conceptual clarification. Analysis of these dimensions on the basis of their respective key notions—everpresent, feeling, defence; death, awareness, difficult communication; and inner growth, giving meaning, authenticity—further clarifies the concept. Although none of the key notions are unambiguous, they may function as a starting point for the development of care strategies on EL at the end of life. PMID:20440564

  18. End-of-life practices in a tertiary intensive care unit in Saudi Arabia.

    PubMed

    Aldawood, Abdulaziz S; Alsultan, Mohammad; Arabi, Yaseen M; Baharoon, Salim A; Al-Qahtani, S; Al-Qahtani, M; Haddad, Samir H; Al-Dorzi, Hasan M; Al-Jahdali, Hamdan; Jahdali, Hamdan A; Alatassi, Abdulaleem; Rishu, Asgar H

    2012-01-01

    Our aim was to evaluate end-of-life practices in a tertiary intensive care unit in Saudi Arabia. A prospective observational study was conducted in the medical-surgical intensive care unit of a teaching hospital in Riyadh, Saudi Arabia. Over the course of the one-year study period, 176 patients died and 77% of these deaths were preceded by end-of-life decisions. Of these, 66% made do-not-resuscitate decisions, 30% decided to withhold life support and 4% withdrew life support. These decisions were made after a median time of four days (Q1 to Q3: 1 to 9) and at least one day before death (Q1 to Q3: 1 to 4). The patients' families or surrogates were informed for 88% of the decisions and all decisions were documented in the patients' medical records. Despite religious and cultural values, more than three-quarters of the patients whose deaths were preceded by end-of-life decisions gave do-not-resuscitate decisions before death. These decisions should be made early in the patients' stay in the intensive care unit. PMID:22313074

  19. Working with Russian-Jewish immigrants in end-of-life care settings.

    PubMed

    Newhouse, Leonid

    2013-01-01

    This article examines Russian-Jewish immigrant clients' attitudes toward death and dying in the context of today's health care system. Aspects of individuals' collective past--such as the traumatic history of their country of origin; cultural prohibitions against discussing pain, suffering, and death; and the lack of familiarity with palliative care that are likely to affect their decisions about end-of-life care--are discussed. Case vignettes are provided, with a discussion on how best to engage these clients in therapeutic work.

  20. Palliative and End-of-Life Ethical Dilemmas in the Intensive Care Unit.

    PubMed

    Wiegand, Debra L; MacMillan, Julia; dos Santos, Maiara Rogrigues; Bousso, Regina Szylit

    2015-01-01

    Critical care nurses and advanced practice registered nurses frequently face bioethical dilemmas in clinical practice that are related to palliative and end-of-life care. Many of these dilemmas are associated with decisions made concerning continuing, limiting, or withdrawing life-sustaining treatments. The purpose of this article is to describe common ethical challenges through case study presentations and discuss approaches that critical care nurses and advanced practice registered nurses in collaboration with the interdisciplinary team can use to address these challenges. Resources that may be helpful in managing ethical dilemmas are identified.

  1. Goals of care toward the end of life: a structured literature review.

    PubMed

    Kaldjian, Lauris C; Curtis, Ann E; Shinkunas, Laura A; Cannon, Katrina T

    Goals of care are often mentioned as an important component of end-of-life discussions, but there are diverse assessments regarding the type and number of goals that should be considered. To address this lack of consensus, we searched MEDLINE (1967-2007) for relevant articles and identified the number, phrasing, and type of goals they addressed. An iterative process of categorization resulted in a list of 6 practical, comprehensive goals: (1) be cured, (2) live longer, (3) improve or maintain function/quality of life/ independence, (4) be comfortable, (5) achieve life goals, and (6) provide support for family/caregiver. These goals can be used to articulate goal-oriented frameworks to guide decision making toward the end of life and thereby harmonize patients' treatment choices with their values and medical conditions.

  2. [Nursing and the humanization of the end- of-life care within healthcare systems].

    PubMed

    Gómez Arca, Marina

    2014-01-01

    The reflection upon the humanisation of the end-of-life process within healthcare systems and the implication of healthcare professionals is the main objective of this article. The evolution of the model of care and nurses leadership role at the end-of-life process is evaluated. This analysis starts from the first European references regarding advance wills, made in 1997 at the Oviedo Convention, until the introduction of the idea of advance directives incorporated into Spanish law in 2002. It sets the concept of advance planning in health-related decisions, which establishes a process of voluntary dialogue where every person can clarify values, preferences and wishes regarding the final moments of life, with the support of the healthcare professionals.

  3. [Nursing and the humanization of the end- of-life care within healthcare systems].

    PubMed

    Gómez Arca, Marina

    2014-01-01

    The reflection upon the humanisation of the end-of-life process within healthcare systems and the implication of healthcare professionals is the main objective of this article. The evolution of the model of care and nurses leadership role at the end-of-life process is evaluated. This analysis starts from the first European references regarding advance wills, made in 1997 at the Oviedo Convention, until the introduction of the idea of advance directives incorporated into Spanish law in 2002. It sets the concept of advance planning in health-related decisions, which establishes a process of voluntary dialogue where every person can clarify values, preferences and wishes regarding the final moments of life, with the support of the healthcare professionals. PMID:25132259

  4. Clinical review: Ethics and end-of-life care for critically ill patients in China

    PubMed Central

    2013-01-01

    Critical care medicine in China has made great advances in recent decades. This has led to an unavoidable issue: end-of-life ethics. With advances in medical technology and therapeutics allowing the seemingly limitless maintenance of life, the exact time of death of an individual patient is often determined by the decision to limit life support. How to care for patients at the end of life is not only a medical problem but also a social, ethical, and legal issue. A lot of factors, besides culture, come into play in determining a person’s ethical attitudes or behaviors, such as experience, education, religion, individual attributes, and economic considerations. Chinese doctors face ethical problems similar to those of their Western counterparts; however, since Chinese society is different from that of Western countries in cultural traditions, customs, religious beliefs, and ethnic backgrounds, there is a great difference between China and the Western world in regard to ethics at the end of life, and there is also a huge controversy within China. PMID:24313980

  5. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia.

    PubMed

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-05-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively 'dead'. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma's position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death.

  6. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia

    PubMed Central

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-01-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively ‘dead’. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma’s position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death. PMID:27211055

  7. Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia.

    PubMed

    Soh, Tze Ling Gwendoline Beatrice; Krishna, Lalit Kumar Radha; Sim, Shin Wei; Yee, Alethea Chung Peng

    2016-05-01

    Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively 'dead'. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma's position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death. PMID:27211055

  8. The international observatory on end of life care: a global view of palliative care development.

    PubMed

    Clark, David; Wright, Michael

    2007-05-01

    The International Observatory on End of Life Care (IOELC) was established at Lancaster University, UK, in 2003. Its aims are to provide clear and accessible research-based information about hospice and palliative care provision in the international context. Dissemination is via the Observatory web site (www.eolc-observatory.net), as well as through published articles, monographs, reports, and other media, in ways that facilitate cross-national comparative analysis and stimulate practical development. Primary research studies and reviews are undertaken to generate relevant information. We describe the methods adopted by the IOELC and the range of projects recently undertaken. In particular, we give details of the IOELC categorization of hospice and palliative care development, which can be applied at the country level to facilitate international comparison. We show how this has been used to create a "world map" of hospice and palliative care provision and indicate some of the uses to which this can be put and the ways in which it can be refined over time.

  9. Evaluation of an Educational Workshop to Increase Comfort Levels of Professional Caregivers with End-of-Life Care.

    PubMed

    Corcoran, Karen

    2016-01-01

    A workshop to enable professional caregivers to meet the needs of patients, families, and themselves during the end-of-life process is described. This quality initiative sought to improve professional caregivers' comfort with end-of-life care through use of an education intervention. PMID:27323469

  10. Evaluation of an Educational Workshop to Increase Comfort Levels of Professional Caregivers with End-of-Life Care.

    PubMed

    Corcoran, Karen

    2016-01-01

    A workshop to enable professional caregivers to meet the needs of patients, families, and themselves during the end-of-life process is described. This quality initiative sought to improve professional caregivers' comfort with end-of-life care through use of an education intervention.

  11. End of Life Care and the Chaplain's Role on the Medical Team

    PubMed Central

    Lahaj, Mary

    2012-01-01

    This article depicts a chaplain’s role in various learning and teaching situations, including end-of-life care and cases requiring cultural competency and gender preferences. The cases exemplify and underscore the difference between the role of a chaplain and the imam, as well as the necessity to have imams and both male and female chaplains in the hospital. It also describes the training, education, pastoral formation, pastoral identity, and roots of pastoral care in the Islamic tradition. The article explores the challenges of this new profession and advocates having a Muslim chaplain available in the hospital to serve Muslim patients, families, and the non-Muslim staff. PMID:23610504

  12. Palliative Care and the Humanities: Centralizing the Patient at the End of Life

    PubMed Central

    Franke, Richard J.

    2016-01-01

    Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike. PMID:27505023

  13. Palliative Care and the Humanities: Centralizing the Patient at the End of Life.

    PubMed

    Franke, Richard J

    2016-03-01

    Palliative care is a quickly growing facet of modern medicine. While scientific advancements have broken new ground for the possibilities of end-of-life care, sensitive treatment of the patient as an individual has lagged behind and has frequently led to an unsatisfactory experience for patients, families, and the medical community at large. This essay argues that centralizing patients during the terminal phases of treatment by using humanistic perspectives has the potential to bring new meaning and improved effectiveness to patients and physicians alike. PMID:27505023

  14. Effect of end of life education on medical students' and health care workers' death attitude.

    PubMed

    Hegedus, K; Zana, A; Szabó, G

    2008-04-01

    One of the goals of education in end of life care is to make communication more open by exploring critical issues related to fear of dying and death in order to reduce anxiety and improve an individual's attitude to dying patients. The aim of our research was to evaluate the effects of courses for health care workers and medical students in care at the end of life. One hundred and twenty-seven health care professionals and 41 undergraduate medical students completed the Multidimensional Fear of Death Scale (MFODS) on the first and last day of the course. The most significant factors of fear of death are: Fear for Significant Others, Fear of the Dying Process and Fear of the Unknown. Overall fear of death scores were reduced as an effect of the courses. Changes in the components and level of fear of death are influenced by the participants' gender, age and profession. Improvement was evident in the attitudes to dying patients in both groups, which was related to an increase in knowledge of high-quality care of dying patients.

  15. Health care professionals’ comprehension of the legal status of end-of-life practices in Quebec

    PubMed Central

    Marcoux, Isabelle; Boivin, Antoine; Arsenault, Claude; Toupin, Mélanie; Youssef, Joseph

    2015-01-01

    Abstract Objective To determine health care professionals’ understanding of the current legal status of different end-of-life practices and their future legal status if medical aid in dying were legalized, and to identify factors associated with misunderstanding surrounding the current legal status. Design Cross-sectional survey using 6 clinical scenarios developed from a validated European questionnaire and from a validated classification of end-of-life practices. Setting Quebec. Participants Health care professionals (physicians and nurses). Main outcome measures Perceptions of the current legal status of the given scenarios and whether or not the practices would be authorized in the event that medical aid in dying were legalized. Results Among the respondents (n = 271, response rate 88.0%), more than 98% knew that the administration or prescription of lethal medication was currently illegal. However, 45.8% wrongly thought that it was not permitted to withdraw a potentially life-prolonging treatment at the patient’s request, and this misconception was more common among nurses and professionals who had received their diplomas longer ago. Only 39.5% believed that, in the event that medical aid in dying were legalized, the use of lethal medication would be permitted at the patient’s request, and 34.6% believed they would be able to give such medication to an incompetent patient upon a relative’s request. Conclusion Health care professionals knew which medical practices were illegal, but some wrongly believed that current permitted practices were not legal. There were various interpretations of what would or would not be allowed if medical aid in dying were legalized. Education on the clinical implications of end-of-life practice legislation should be promoted. PMID:26052600

  16. Detained and Dying: Ethical Issues Surrounding End-of-Life Care in Prison.

    PubMed

    Stensland, Meredith; Sanders, Sara

    2016-01-01

    Prisons are increasingly being called upon to provide end-of-life (EOL) care within the restrictive correctional environment. Several relatively recent phenomena have brought medical ethics to the forefront of prison EOL care-including aging behind bars, a paradigm shift in prison culture, the increasing rate of in-prison deaths, and the corresponding prison hospice movement. This article examines prominent ethical issues that emerge for prison personnel who are tasked with providing care to terminally ill offenders by presenting three offender composite characters that exemplify dying offenders and emergent ethical issues surrounding their care. Identification and critical analysis of these ethical issues demonstrate the need for strong commitment to ethical practice and highlights specific issues for prisons to examine in their own EOL care practice.

  17. Detained and Dying: Ethical Issues Surrounding End-of-Life Care in Prison.

    PubMed

    Stensland, Meredith; Sanders, Sara

    2016-01-01

    Prisons are increasingly being called upon to provide end-of-life (EOL) care within the restrictive correctional environment. Several relatively recent phenomena have brought medical ethics to the forefront of prison EOL care-including aging behind bars, a paradigm shift in prison culture, the increasing rate of in-prison deaths, and the corresponding prison hospice movement. This article examines prominent ethical issues that emerge for prison personnel who are tasked with providing care to terminally ill offenders by presenting three offender composite characters that exemplify dying offenders and emergent ethical issues surrounding their care. Identification and critical analysis of these ethical issues demonstrate the need for strong commitment to ethical practice and highlights specific issues for prisons to examine in their own EOL care practice. PMID:27462955

  18. A novel interprofessional approach to end-of-life care education: A pilot study.

    PubMed

    Sinha, Pranay; Murphy, Susan Perrin; Becker, Chelsea Marie; Poarch, Hunter Jameson; Gade, Kristine Elizabeth; Wolf, Alexander Thomas; Martindale, James Robert; Owen, John Alexander; Brashers, Valentina

    2015-01-01

    Navigating the biomedical, emotional, and logistical complexity of end-of-life (EOL) care requires seamless interprofessional teamwork. Unfortunately, EOL care, interprofessional collaboration, and the role of support services such as hospice are not adequately emphasized in nursing and medical curricula. This article describes a student-run program, entitled the "HeArt of Medicine", which was designed to foster a reflective and collaborative approach to EOL care. The program consists of three workshops with a novel blend of art, science, and practical information, highlighting the need for interprofessional teamwork. Participants were surveyed before and after the workshops on their attitudes toward EOL care. Composite participant scores after workshops demonstrated increased comfort with and knowledge of EOL care topics (p = 0.001). The results show that this program has had a positive impact on participants' knowledge, comfort, and collaboration in EOL settings.

  19. Prognosis terminal: truth-telling in the context of end-of-life care.

    PubMed

    Rich, Ben A

    2014-04-01

    Recent contributions to the medical literature have raised yet again the issue of whether the term "terminal" is an intelligible one and whether there is a consensus view of its meaning that is sufficient to justify or even require its use in discussing end-of-life care and treatment options with patients. Following a review of the history and development of informed consent, persistent problems with the communication of prognosis and the breaking of bad news are analyzed. The author argues that candid but compassionate communication between physicians and patients about prognosis is essential to informed decisions about both disease-directed (curative) and palliative therapies.

  20. The importance of patient-provider communication in end-of-life care.

    PubMed

    Rice, Timothy R; Dobry, Yuriy; Novakovic, Vladan; Appel, Jacob M

    2012-12-01

    Successful formulation and implementation of end-of-life care requires ongoing communication with the patient. When patients, for reasons of general medical or psychiatric illness, fail to verbally communicate, providers must be receptive to messages conveyed through alternate avenues of communication. We present the narrative of a man with schizophrenia who wished to forgo hemodialysis as a study in the ethical importance of attention to nonverbal communication. A multilayered understanding of the patient, as may be provided by both behavioral and motivational models, can inform the provider's ability to receive, process, and represent communicated content to the patient or his or her surrogate decision-maker.

  1. Better care for the dying. Hawaii healthcare system develops a manual for end-of-life care.

    PubMed

    Kalua, P M; Tan, S Y; Bacon, J G

    1999-01-01

    In early 1996, as it became clear that Americans were becoming increasingly concerned about end-of-life care, the leaders of St. Francis Healthcare System (SFHS), Honolulu, convened a meeting at which local people--community and parish representatives as well as healthcare professionals--discussed the matter. The meeting's participants identified 10 issues as essential in end-of-life care: decision making, pain management and comfort care, pastoral and spiritual care, psychosocial care, hospice and home care, cardiopulmonary resuscitation, futility, withholding and withdrawing treatment, artificial nutrition and hydration, physician-assisted suicide and euthanasia. The participants then divided themselves into 10 teams, each of which spent six months studying one of the identified essential issues. In each case, the team reviewed the relevant SFHS policies and procedures and compared them with national standards. The team also interviewed staff members about the policies and procedures, comparing the written versions with actual practices. Each team then wrote a chapter on its assigned issue, after which a core committee wove the chapters into an end-of-life care manual for SFHS. The manual was published in June 1997. The system's leaders currently use the manual to educate staff members in good end-of-life care. PMID:10351504

  2. Better care for the dying. Hawaii healthcare system develops a manual for end-of-life care.

    PubMed

    Kalua, P M; Tan, S Y; Bacon, J G

    1999-01-01

    In early 1996, as it became clear that Americans were becoming increasingly concerned about end-of-life care, the leaders of St. Francis Healthcare System (SFHS), Honolulu, convened a meeting at which local people--community and parish representatives as well as healthcare professionals--discussed the matter. The meeting's participants identified 10 issues as essential in end-of-life care: decision making, pain management and comfort care, pastoral and spiritual care, psychosocial care, hospice and home care, cardiopulmonary resuscitation, futility, withholding and withdrawing treatment, artificial nutrition and hydration, physician-assisted suicide and euthanasia. The participants then divided themselves into 10 teams, each of which spent six months studying one of the identified essential issues. In each case, the team reviewed the relevant SFHS policies and procedures and compared them with national standards. The team also interviewed staff members about the policies and procedures, comparing the written versions with actual practices. Each team then wrote a chapter on its assigned issue, after which a core committee wove the chapters into an end-of-life care manual for SFHS. The manual was published in June 1997. The system's leaders currently use the manual to educate staff members in good end-of-life care.

  3. Psychosocial, Cultural, and Spiritual Health Disparities in End of Life and Palliative Care: Where We Are and Where We Need to Go

    PubMed Central

    Evans, Bronwynne C.; Ume, Ebere

    2012-01-01

    Background Although health disparities are well documented, the extent to which they affect end of life care is unknown. Limited research funding leads to sparse and often contradictory palliative care literature, with few studies on causal mechanisms. Purpose The purpose of this article is to explore the psychosocial, cultural and spiritual health disparities existing in palliative and end of life care with the goal of identifying future research needs. Method To determine knowledge gaps related to health disparities in psychosocial, cultural, and spiritual aspects of end of life care we draw upon recent literature from multiple databases. Discussion Although there are few data, we do know minorities make little use of hospice, often because of lack of knowledge about hospice or palliative care, family-centered cultures, and preferences for more aggressive end of life care than hospice allows. Conclusion Future research should include a search for theoretical and causal mechanisms; prospective longitudinal investigations; diverse patients, conditions, contexts, and settings; methodological diversity and rigor; and interdisciplinary, culturally sensitive interventions. PMID:23141196

  4. A residential aged care end-of-life care pathway (RAC EoLCP) for Australian aged care facilities.

    PubMed

    Reymond, Liz; Israel, Fiona J; Charles, Margaret A

    2011-08-01

    The objective of this study was to develop, implement and evaluate an end-of-life (terminal) care pathway and associated infrastructure suitable for Australian residential aged care facilities that improves resident and health system outcomes. The residential aged care end-of-life care pathway was developed by a multidisciplinary collaboration of government and non-government professionals and incorporated best clinical management for dying residents to guide care and increase palliative care capacity of generalist staff. Implementation included identifying and up-skilling Link Nurses to champion the pathway, networking facilities with specialist palliative care services, delivering education to generalists and commencing a Palliative Care Medication Imprest System in each facility. The primary outcome measure for evaluation was transfer to hospital; secondary measures included staff perceived changes in quality of palliative care provided and family satisfaction with care. Results indicated that the pathway, delivered within a care framework that guides provision of palliative care, resulted in improved resident outcomes and decreased inappropriate transfers to acute care settings. PMID:21871198

  5. End of Life Issues

    MedlinePlus

    ... difficult. But by deciding what end-of-life care best suits your needs when you are healthy, ... making choices about the following: The goals of care (for example, whether to use certain medicines during ...

  6. Improving End-of-Life Care Prognostic Discussions: Role of Advanced Practice Nurses.

    PubMed

    Kalowes, Peggy

    2015-01-01

    Research has validated the desire of patients and families for ongoing prognostic information; however, few conversations occur before patients reach the advanced stages of their disease trajectory. Physician hesitance and delay in discussing unfavorable prognoses deny patients and families optimal time to prepare for critical decision making. Advanced practice registered nurses can play a crucial, complementary role with the critical care interdisciplinary team to implement strategies to improve communication about prognosis and end of life with patients and families. Clinicians should discuss deterioration in disease-specific characteristics and changes (decline) in functional status. Functional status can serve as an accurate guide for forecasting prognosis, particularly in patients with heart failure, stroke, chronic lung disease, and end-stage renal disease. This article provides an overview of effective intensive care unit prognostic systems and discusses barriers and opportunities for nurses to use evidence-based knowledge related to disease trajectory and prognosis to improve communication and the quality of palliative and end-of-life care for patients.

  7. Difficulties of residents in training in end-of-life care. A qualitative study.

    PubMed

    Luthy, C; Cedraschi, C; Pautex, S; Rentsch, D; Piguet, V; Allaz, A F

    2009-01-01

    Residents in training are first-line physicians in hospital settings and they are in the process of developing knowledge and mastering clinical skills. They have to confront complex tasks calling upon their personal background, professional identity and relationships with the patients. We conducted a qualitative study investigating the difficulties they perceive in end-of-life care. In all, 24 consecutive residents were presented with a written query asking them to indicate the difficulties they identify in the management of patients hospitalised for end-of-life care. Their responses were submitted to content analysis. Physicians' mean age was 28 +/- 2.2 years, 37% were women, average postgraduate training duration was 2.5 +/- 1.3 years. Content analysis elicited eight categories of difficulties: ability to provide adequate explanations, understand the patients' needs, have sufficient theoretical knowledge, avoid flight, avoid false reassurance, manage provision of time, face one's limits as a physician and be able to help despite everything. Residents' responses showed that they identify the complexity of care in terminally-ill patients early in their training. Their responses pointed to the 'right distance' in-between getting involved and preserving oneself as a dimension of major importance. PMID:18996979

  8. Equality for followers of South Asian religions in end-of-life care.

    PubMed

    Samanta, Jo

    2013-06-01

    Significant minority populations confer richness and diversity to British society. Responsive end-of-life care is a universal need that has ascended the public agenda following myriad reports of inadequate provision. Nevertheless, the potential exists for unwitting discrimination when caring for terminally ill patients on the basis of their religion or faith. Recent implementation of the Equality Act 2010, together with the government and professional initiatives, promises to positively impact upon this area of contemporary relevance and concern, although the extent to which facilitative policies can truly enhance patient care will depend upon how these are translated into care at the bedside. The contributions of health professionals will be central in meeting the challenges and seizing the opportunities for meeting the religion and faith interests of patients of South Asian descent.

  9. End-of-life issues: a survey of English-speaking Canadian nurses in AIDS care.

    PubMed

    Young, M G; Ogden, R D

    1998-01-01

    This anonymous postal survey explored attitudes and experiences concerning end-of-life decisions. Respondents were English-speaking members of the Canadian Association for Nurses in AIDS Care (CANAC) and other nurses identified as working primarily in HIV/AIDS settings. Seventy-three percent believed that the law should be changed to allow physicians to practice voluntary euthanasia (VE) and assisted suicide (AS). Fifty-three percent indicated that nurses should be allowed to practice VE and AS. Although VE and AS are illegal, fewer than one in five nurses would report a colleague whom they knew to be involved in such acts. More than one in five nurses have received requests from patients to hasten their deaths by VE. Nearly 98% believe that the nursing profession should be involved in policy development concerning VE and AS, and nearly 78% believe that nurses should be involved in the decision-making process with patients if such acts were legal. Given that ethical codes for Canadian nurses promote client self-determination and that nurses are the largest group of care providers for the terminally ill, the profession must promote discussion and research if it is to take a leadership role with respect to end-of-life issues. PMID:9513132

  10. Dignity in end-of-life care: results of a national survey of US physicians

    PubMed Central

    Antiel, Ryan M.; Curlin, Farr A.; James, Katherine M.; Sulmasy, Daniel P.; Tilburt, Jon C.

    2014-01-01

    Context Debates persist about the relevance of “dignity” as an ethical concept in US healthcare, especially in end-of-life care. Objective To describe the attitudes and beliefs regarding the usefulness and meaning of the concept of dignity and to examine judgments about a clinical scenario in which dignity might be relevant. Methods 2000 practicing U.S. physicians, from all specialties, were mailed a survey. Main measures included physician’s judgments about an end-of-life clinical scenario (criterion variable), attitudes about the concept of dignity (predictors), and their religious characteristics (predictors). Results 1032 eligible physicians (54%) responded. Nine out of ten (90%) physicians reported that dignity was relevant to their practice. After controlling for age, gender, region, and specialty, physicians who judged that the case patient had either some dignity or full dignity, and who agreed that dignity is given by a creator, were all positively associated with believing that the patient’s life was worth living [OR 10.2 (5.8–17.8), OR 20.5 (11.4–36.8), OR 4.7 (3.1–7.0), respectively]. Respondents who strongly agreed that “all living humans have the same amount of dignity” were also more likely to believe that the patient’s life was worth living [OR 1.8 (1.2–2.7)]. Religious characteristics were also associated with believing that the case patient’s life was worth living [OR 4.1 (2.4–7.2), OR 3.2 (1.6–6.3), OR 9.2 (4.3–19.5), respectively]. Conclusion US physicians view the concept of dignity as useful. Those views are associated with their judgments about common end-of-life scenarios in which dignity concepts may be relevant. PMID:22762966

  11. Improving and validating children's nurses communication skills with standardized patients in end of life care.

    PubMed

    Kenny, Gerard; Cargil, Jamie; Hamilton, Catherine; Sales, Rachel

    2016-06-01

    Children's nurse education is experiencing increases in recruitment targets at the same time that clinical placements are decreasing. With regard to end-of-life care, it is has become a challenge to ensure that all students come into contact with a satisfactory range of experience as part of the requirement for competency at the point of registration. The aim of our study was to find out if students at the end of their course were able to use communication skills acquired in their three years of training and adapt and transfer them to a specific palliative care context even if they had never worked in that area of care. Focus groups were conducted after the simulations which explored the students' experiences of being involved in the scenarios. Four themes emerged that students identified either inhibited or enabled their communication skills, which included anxiety and fear, the need for professional props, the experience of it being real and feeling empowered.

  12. Practicing End-of-Life Conversations: Physician Communication Training Program in Palliative Care.

    PubMed

    Rucker, Bronwyn; Browning, David M

    2015-01-01

    A Physician Communication Training Program (PCTP) utilizing scripts based on actual family conferences with patients, families, and the health care team was developed at one medical center in the Northeast. The program was designed, adapted, and directed by a palliative care social worker. The primary goal of the program is to help residents and attending physicians build better communication skills in establishing goals of care and in end-of-life planning. The scripts focus on improving physicians' basic skills in conducting family meetings, discussing advance directives, prognosis, brain death, and withdrawal of life support. Excerpts from the scripts utilized in the program are included. Feedback from participants has been positive, with all respondents indicating improvement in their capacity to take part in these challenging conversations.

  13. Valuing end-of-life care in the United States: the case of new cancer drugs.

    PubMed

    Sorenson, Corinna

    2012-10-01

    New cancer therapies offer the hope of improved diagnosis to patients with life-threatening disease. Over the past 5-10 years, a number of specialty drugs have entered clinical practice to provide better systemic therapy for advanced cancers that respond to few therapeutic alternatives. To date, however, such advances have been only modestly effective in extending life and come with a high price tag, raising questions about their value for money, patient access and implications for health care costs. This article explores some of the key issues present in valuing end-of-life care in the United States in the case of advanced cancer drugs, from the difficult trade-offs between their limited health benefits and high costs to the technical, political and social challenges in assessing their value and applying such evidence to inform policy and practice. A number of initial steps are discussed that could be pursued to improve the value of advanced cancer care. PMID:23079300

  14. Using sociodrama and psychodrama to teach communication in end-of-life care.

    PubMed

    Baile, Walter F; De Panfilis, Ludovica; Tanzi, Silvia; Moroni, Matteo; Walters, Rebecca; Biasco, Guido

    2012-09-01

    End-of-life discussions can be stressful and can elicit strong emotions in the provider as well as the patient and family. In palliative care, understanding and effectively addressing emotions is a key skill that can enhance professional competency and patient/family satisfaction with care. We illustrate how in coursework for a Master's degree in palliative medicine we used dramatic "action methods" derived from sociodrama and psychodrama in the portrayal of two challenging cases to train providers in the emotional aspects of caring for patients with advanced cancer. We describe the specific techniques of constructing and enacting case scenarios using warm-ups, role-creation, doubling and role-reversal. In particular, we illustrate how these techniques and others were used to reveal and address the "hidden" emotions, attitudes, and values that were central to the communication dilemma. Finally, we present an evaluation completed by the 26 participants who attended the course.

  15. Physician Religion and End-of-Life Pediatric Care: A Qualitative Examination of Physicians' Perspectives.

    PubMed

    Bateman, Lori Brand; Clair, Jeffrey Michael

    2015-01-01

    Physician religion/spirituality has the potential to influence the communication between physicians and parents of children at the end of life. In order to explore this relationship, the authors conducted two rounds of narrative interviews to examine pediatric physicians' perspectives (N=17) of how their religious/spiritual beliefs affect end-of-life communication and care. Grounded theory informed the design and analysis of the study. As a proxy for religiosity/spirituality, physicians were classified into the following groups based on the extent to which religious/spiritual language was infused into their responses: Religiously Rich Responders (RRR), Moderately Religious Responders (MRR), and Low Religious Responders (LRR). Twelve of the 17 participants (71%) were classified into the RRR or MRR groups. The majority of participants suggested that religion/spirituality played a role in their practice of medicine and communication with parents in a myriad of ways and to varying degrees. Participants used their religious/spiritual beliefs to support families' spirituality, uphold hope, participate in prayer, and alleviate their own emotional distress emerging from their patients' deaths.

  16. Care of Patients at the End of Life: Management of Nonpain Symptoms.

    PubMed

    Baralatei, Florence T; Ackermann, Richard J

    2016-08-01

    Management of nonpain symptoms can improve quality of life for patients at the end of life and their family members. Constipation is the most common nonpain symptom. It can be related to opioid therapy and/or medical conditions. After abdominal examination to detect masses or evidence of bowel obstruction and rectal examination to exclude fecal impaction, constipation should be managed with a stimulant laxative (eg, senna) or an osmotic laxative (eg, sorbitol). Dyspnea also is common, and often improves with use of a fan to blow air into the face, as well with breathing and relaxation exercises. However, many patients require titrated doses of opioids to address respiratory depression, and anxiolytics such as haloperidol may be needed to manage dyspnea-related anxiety. Oxygen typically is not effective in dyspnea management in nonhypoxemic patients at the end of life. Cough is managed with antitussives. Nausea and vomiting occur in 70% of patients in palliative care units. If no reversible etiology can be identified, dopamine antagonists and motility-enhancing drugs can be used. There are no clearly effective treatments to manage noisy respiratory secretions, but position change, decrease in fluid intake, and drugs such as scopolamine or glycopyrrolate may be effective. PMID:27490069

  17. Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

    PubMed

    Williams, Allison M; Wang, Li; Kitchen, Peter

    2016-03-01

    This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. PMID:25727849

  18. Communication skills training for dialysis decision-making and end-of-life care in nephrology.

    PubMed

    Schell, Jane O; Green, Jamie A; Tulsky, James A; Arnold, Robert M

    2013-04-01

    Nephrology fellows often face difficult conversations about dialysis initiation or withdrawal but are frequently unprepared for these discussions. Despite evidence that communication skills are teachable, few fellowship programs include such training. A communication skills workshop for nephrology fellows (NephroTalk) focused on delivering bad news and helping patients define care goals, including end-of-life preferences. This 4-hour workshop, held in October and November 2011, included didactics and practice sessions with standardized patients. Participants were nephrology fellows at Duke University and the University of Pittsburgh (n=22). Pre- and post-workshop surveys evaluated efficacy of the curriculum and measured changes in perceived preparedness on the basis on workshop training. Overall, 14% of fellows were white and 50% were male. Less than one-third (6 of 22) reported prior palliative care training. Survey response rate varied between 86% and 100%. Only 36% (8 of 22) and 38% (8 of 21) of respondents had received structured training in discussions for dialysis initiation or withdrawal. Respondents (19 of 19) felt that communication skills were important to being a "great nephrologist." Mean level of preparedness as measured with a five-point Likert scale significantly increased for all skills (range, 0.5-1.14; P<0.01), including delivering bad news, expressing empathy, and discussing dialysis initiation and withdrawal. All respondents (21 of 21) reported they would recommend this training to other fellows. NephroTalk is successful for improving preparedness among nephrology fellows for having difficult conversations about dialysis decision-making and end-of-life care.

  19. Cost accounting for end-of-life care: recommendations to the field by the Cost Accounting Workgroup.

    PubMed

    Seninger, Stephen; Smith, Dean G

    2004-01-01

    Accurate measurement of economic costs is prerequisite to progress in improving the care delivered to Americans during the last stage of life. The Robert Wood Johnson Excellence in End-of-Life Care national program assembled a Cost Accounting Workgroup to identify accurate and meaningful methods to measure palliative and end-of-life health care use and costs. Eight key issues were identified: (1) planning the cost analysis; (2) identifying the perspective for cost analysis; (3) describing the end-of-life care program; (4) identifying the appropriate comparison group; (5) defining the period of care to be studied; (6) identifying the units of health care services; (7) assigning monetary values to health care service units; and (8) calculating costs. Economic principles of cost measurement and cost measurement issues encountered by practitioners were reviewed and incorporated into a set of recommendations.

  20. Biofield therapies for symptom management in palliative and end-of-life care.

    PubMed

    Henneghan, Ashley M; Schnyer, Rosa N

    2015-02-01

    Terminally ill patients experience negative symptoms at end of life (EOL) that hinder well-being and quality of life (QOL). Current intervention strategies are not always effective or feasible. A focused literature review to evaluate the use of biofield therapies (ie, Therapeutic Touch, Healing Touch, and Reiki) to manage the symptoms in EOL revealed no studies on the use these therapies, specifically in this population. Evidence from studies on relevant populations (patients with cancer, elderly patients, and patients experiencing chronic pain), which addressed the outcomes relevant to palliative and EOL care (EOLC; pain levels, changes in psychological symptoms, well-being, and QOL), supports the use of biofield therapies in relieving pain, improving QOL and well-being, and reducing psychological symptoms of stress. Further research to assess the use of biofield therapies in EOLC is clearly needed.

  1. Biofield therapies for symptom management in palliative and end-of-life care.

    PubMed

    Henneghan, Ashley M; Schnyer, Rosa N

    2015-02-01

    Terminally ill patients experience negative symptoms at end of life (EOL) that hinder well-being and quality of life (QOL). Current intervention strategies are not always effective or feasible. A focused literature review to evaluate the use of biofield therapies (ie, Therapeutic Touch, Healing Touch, and Reiki) to manage the symptoms in EOL revealed no studies on the use these therapies, specifically in this population. Evidence from studies on relevant populations (patients with cancer, elderly patients, and patients experiencing chronic pain), which addressed the outcomes relevant to palliative and EOL care (EOLC; pain levels, changes in psychological symptoms, well-being, and QOL), supports the use of biofield therapies in relieving pain, improving QOL and well-being, and reducing psychological symptoms of stress. Further research to assess the use of biofield therapies in EOLC is clearly needed. PMID:24259404

  2. Diversity in Defining End of Life Care: An Obstacle or the Way Forward?

    PubMed Central

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Higginson, Irene J.; Harding, Richard; Pool, Robert

    2013-01-01

    Aim The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to understand its current usage and meanings. Method A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to experts in the field identified through the literature, European EoL care associations, and conferences targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis. Results Responses were received from 167 individuals (33% response rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice and only 14% offered a standard definition (WHO, or local institution). 2% said that the concept of EoL care was not used in their country, and 5% said that there was opposition to the concept for religious or cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively by drawing boundaries through setting time frames, and inclusively by approaching its scope in an integrative way. This led to reflections about terminology and whether defining EoL care is desirable. Conclusion The global expansion of EoL care contributes to the variety of interpretations of what it means. This complicates the endeavour of defining the field. However, when diversity is taken seriously it can open up new perspectives to underpin the ethical framework of EoL care. PMID:23844145

  3. Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia?

    PubMed

    Procter, Elizabeth

    2012-07-01

    The UK End of Life Care Strategy (EoLCS) requires specialist palliative care services to contribute to end-of-life care for all. This systematic review aims to critically appraise literature published in the UK to identify how specialist palliative care professionals can collaborate with other health professionals within four of the key National Service Framework areas: heart failure, chronic obstructive pulmonary disease, neurological conditions, and dementia. Relevant literature was identified by electronic searches of various databases and websites and via secondary sources. A limited amount of quality research was found. Thematic analysis was applied and the over-riding themes were barriers to collaboration, organizational issues, and patients' and carers' views. The review concludes that when a collaborative approach to care is used, quality end-of-life care is achieved. Each disease pathway needs greater clarity regarding how it links with the EoLCS. PMID:22885966

  4. Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia?

    PubMed

    Procter, Elizabeth

    2012-07-01

    The UK End of Life Care Strategy (EoLCS) requires specialist palliative care services to contribute to end-of-life care for all. This systematic review aims to critically appraise literature published in the UK to identify how specialist palliative care professionals can collaborate with other health professionals within four of the key National Service Framework areas: heart failure, chronic obstructive pulmonary disease, neurological conditions, and dementia. Relevant literature was identified by electronic searches of various databases and websites and via secondary sources. A limited amount of quality research was found. Thematic analysis was applied and the over-riding themes were barriers to collaboration, organizational issues, and patients' and carers' views. The review concludes that when a collaborative approach to care is used, quality end-of-life care is achieved. Each disease pathway needs greater clarity regarding how it links with the EoLCS.

  5. Sedation, alimentation, hydration, and equivocation: careful conversation about care at the end of life.

    PubMed

    Jansen, Lynn A; Sulmasy, Daniel P

    2002-06-01

    In the recent medical ethics literature, several authors have recommended terminal sedation and refusal of hydration and nutrition as important, morally acceptable, and relatively uncontroversial treatment options for end-of-life suffering. However, not all authors use these terms to refer to the same practices. This paper examines the various ways that the terms terminal sedation and refusal of hydration and nutrition have been used in the medical literature. Although some of these practices are ethically appropriate responses to end-of-life suffering, others (at least as they are currently described in the medical ethics literature) are not. This paper identifies and discusses the principles that morally distinguish these practices from one another and specifically describes different features of medical practices and moral principles that affect the moral acceptability of various medical treatments. These distinctions reveal the complexity of the issues surrounding terminal sedation and refusal of hydration and nutrition, a complexity that has not been adequately addressed in recent discussions.

  6. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

    PubMed

    Yu, Mo; Guerriere, Denise N; Coyte, Peter C

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

  7. Culture and End of Life Care: A Scoping Exercise in Seven European Countries

    PubMed Central

    Gysels, Marjolein; Evans, Natalie; Meñaca, Arantza; Andrew, Erin; Toscani, Franco; Finetti, Sylvia; Pasman, H. Roeline; Higginson, Irene; Harding, Richard; Pool, Robert

    2012-01-01

    Aim Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. Methods We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. Results A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. Conclusion This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of Eo

  8. 76 FR 59145 - Submission for OMB Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-09-23

    ...-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of Authors) Summary: Under... Care Science Needs Assessment: Funding Source (Survey of Authors). Type of Information Collection Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science Palliative Care (EOL...

  9. Is there a color line in death? An examination of end-of-life care in the African American community.

    PubMed

    Hazin, Ribhi; Giles, Cheryl A

    2011-07-01

    Although the goals of end-of-life care and hospice are to mitigate suffering and improve quality of life for patients with terminal illnesses, they remain underutilized by a significant number of African Americans. While sociocultural issues play a role in the underutilization of these resources among African Americans, other confounding factors affect the ability of African Americans to adequately access quality care at the end of life. Here, the authors examine the various barriers preventing increased use of hospice care and palliative therapy among African Americans. A particular focus of this examination will revolve around suggestions for increasing the use of end-of-life care among African Americans in the future.

  10. End-of-life care curricula in undergraduate medical education: a comparison of allopathic and osteopathic medical schools.

    PubMed

    Rothman, Margaret D; Gugliucci, Marilyn R

    2008-01-01

    End-of-life care curricula in osteopathic medical schools were compared with allopathic school offerings. An 8-question online survey of undergraduate medical education administrators at all United States osteopathic medical schools (n = 26) and 26 allopathic schools geographically closest to them was conducted in 2007. Responses from 80% (n = 21) of osteopathic schools and 77% (n = 20) of allopathic schools revealed that both osteopathic and allopathic medical schools offered end-of-life care education. Of note is that 71% of the osteopathic medical school respondents had a course that concentrates on end-of-life care compared with 37% of allopathic school respondents (P = .03). This disparity in percentages may be due to a number of reasons, 2 of which may include course identification methods and the primary care orientation and philosophy inherent in osteopathic medical schools.

  11. Strategies for the economic evaluation of end-of-life care: making a case for the capability approach.

    PubMed

    Coast, Joanna

    2014-08-01

    Economic evaluation of end of life care is increasingly expected from both research funders and those making decisions about the use of health and social care resources. There are, however, difficulties in applying the currently established evaluative methods to end of life. These are partly associated with the sensitivity of the topic and the feasibility of data collection but also, more fundamentally, a lack of agreement about the terms in which such care should be evaluated. This paper examines different theoretical perspectives from which economic evaluation of end of life care could be conducted, and argues for the application of a capability approach focusing on the opportunity for a good death. It then examines challenges with taking forward such an approach, including defining, measuring and valuing appropriate outcomes. It concludes that such an approach is viable, and explores how it might be taken forward to assist with resource allocation decisions.

  12. Intensive Care Unit Cultures and End-of-Life Decision Making

    PubMed Central

    Baggs, Judith Gedney; Norton, Sally A.; Schmitt, Madeline H.; Dombeck, Mary T.; Sellers, Craig R.; Quinn, Jill R.

    2007-01-01

    Purpose: Prior researchers studying end-of-life decision making (EOLDM) in intensive care units (ICUs) often have collected data retrospectively and aggregated data across units. There has been little research, however, about how cultures differ among ICUs. This research was designed to study limitation of treatment decision making in real time, to evaluate similarities and differences in the cultural contexts of four ICUs and the relationship of those contexts to EOLDM. Materials and Methods: Ethnographic field work took place in four adult ICUs in a tertiary care hospital. Participants were health care providers (e.g., physicians, nurses, and social workers), patients and their family members. Participant observation and interviews took place 5 days/week for 7 months in each unit. Results: The ICUs were not monolithic. There were similarities, but important differences in EOLDM were identified in formal and informal rules, meaning and uses of technology, physician roles and relationships, processes such as unit rounds, and timing of initiation of EOLDM. Conclusions: As interventions to improve EOLDM are developed, it will be important to understand how they may interact with unit cultures. Attempting to develop one intervention to be used in all ICUs is unlikely to be successful. PMID:17548028

  13. [Options for the improvement of communication and self-determination in end-of-life decisions in intensive care units].

    PubMed

    Zubek, László

    2016-04-24

    The end-of-life decision making process normally based on patient autonomy or substituted judgement. If the patient can express his/her wishes, one must take note of his autonomy. If he/she is unable to self-determination, the importance of advanced directives or substituted judgement increases in the field of end-of-life care. The most important target of the efforts is to improve end-of-life care at intensive care units. Based on bioethical studies of the author and international literature this paper analizes the practice of end-of-life care and presents recommendations for lawmakers. The author proposes to divide patients with organ failure into three parts (end-of-life triage). The first part includes definitely salvageable, the second part definitely unsalvageable, and the third part possibly salvageable groups. This classification depends on the development of medical science and the local options of medical treatment. The quality of the decision-making process can be improved, but all participants must participate and medio-legal regulation must be improved. PMID:27084441

  14. [Continuous sedation until death. A French way for the end-of-life care?].

    PubMed

    Zittoun, Robert

    2016-01-01

    Continuous sedation until death (CSUD) is a practice which has developed recently in several countries, appearing more acceptable than euthanasia and medically assisted suicide, since more close to a "natural death". The French parliament has just adopted a law which stipulates CSUD on request of the patient in a definite number of circumstances, especially in incurable diseases near to the terminal stage with suffering refractory to treatments. Thus France has adopted a unique international position for the end-of-life care. However several ethical problems raised by CSUD, which corresponds to a psycho-social death preceding the biological one, have been raised in the literature. The legitimacy of CSUD, especially if sedation is deep and not proportional to the degree of suffering, or if it is performed in case of a purely existential distress, is a matter of discussion. The primacy allocated to autonomy is questionable for the more vulnerable patients, who deserve mainly a social solidarity. The double-effect principle is replaced actually in CSUD by a co-intention both to relieve suffering and meanwhile eventually to hasten death, especially when stopping nutrition and hydration. CSUD is thus located in a grey zone between palliative care and euthanasia.

  15. [Continuous sedation until death. A French way for the end-of-life care?].

    PubMed

    Zittoun, Robert

    2016-01-01

    Continuous sedation until death (CSUD) is a practice which has developed recently in several countries, appearing more acceptable than euthanasia and medically assisted suicide, since more close to a "natural death". The French parliament has just adopted a law which stipulates CSUD on request of the patient in a definite number of circumstances, especially in incurable diseases near to the terminal stage with suffering refractory to treatments. Thus France has adopted a unique international position for the end-of-life care. However several ethical problems raised by CSUD, which corresponds to a psycho-social death preceding the biological one, have been raised in the literature. The legitimacy of CSUD, especially if sedation is deep and not proportional to the degree of suffering, or if it is performed in case of a purely existential distress, is a matter of discussion. The primacy allocated to autonomy is questionable for the more vulnerable patients, who deserve mainly a social solidarity. The double-effect principle is replaced actually in CSUD by a co-intention both to relieve suffering and meanwhile eventually to hasten death, especially when stopping nutrition and hydration. CSUD is thus located in a grey zone between palliative care and euthanasia. PMID:27217260

  16. A Literature Review of Randomized Controlled Trials of the Organization of Care at the End of Life

    ERIC Educational Resources Information Center

    Thomas, Roger E.; Wilson, Donna; Sheps, Sam

    2006-01-01

    We searched nine electronic databases for randomized controlled trials (RCTs) about care at the end of life and found 23 RCTs. We assessed their quality using the criteria of the Cochrane Collaboration. The RCTs researched three themes: (a) the effect of providing palliative care through dedicated community teams on quality of life, on the…

  17. Canadian Rural-urban Differences in End-of-life Care Setting Transitions

    PubMed Central

    Wilson, Donna M.; Thomas, Roger; Burns, Katharina Kovacs; Hewitt, Jessica A.; Jane, Osei-Waree; Sandra, Robertson

    2012-01-01

    Few studies have focused on the care setting transitions that occur in the last year of life. A three part mixed-methods study was conducted to gain an understanding of the number and implications or impact of care setting transitions in the last year of life for rural Canadians. Provincial health services utilization data, national online survey data, and local qualitative interview data were analyzed to gain general and specific information for consideration. Rural Albertans had significantly more healthcare setting transitions than urbanites in the last year of life (M=4.2 vs 3.3). Online family respondents reported 8 moves on average occurred for family members in the last year of life. These moves were most often identified (65%) on a likert-type scale as “very difficult,” with the free text information revealing these trips were often emotionally painful for themselves and physically painful for their ill family member. Eleven informants were then interviewed until data saturation, with constant-comparative data analysis conducted for a more in-depth understanding of rural transitions. Moving from place to place for needed care in the last year of life was identified as common and concerning for rural people and their families, with three data themes developing: (a) needed care in the last year of life is scattered across many places, (b) travelling is very difficult for terminally-ill persons and their caregivers, and (c) local rural services are minimal. These findings indicate planning is needed to avoid unnecessary end-of-life care setting transitions and to make needed moves for essential services in the last year of life less costly, stressful, and socially disruptive for rural people and their families. PMID:22980372

  18. Health Care Costs in the Last Week of Life: Associations with End of Life Conversations

    PubMed Central

    Zhang, Baohui; Wright, Alexi A.; Huskamp, Haiden A.; Nilsson, Matthew E.; Maciejewski, Matthew L.; Earle, Craig C.; Block, Susan D.; Maciejewski, Paul K.; Prigerson., Holly G.

    2010-01-01

    Background Life-sustaining medical care of cancer patients at the end-of-life (EOL) is costly. Patient-physician discussions about EOL wishes were found to be associated with lower rates of intensive interventions. Methods Coping with Cancer (CwC) is an NCI/NIMH-funded, longitudinal, multi-institutional study of 627 advanced cancer patients. Patients were interviewed at baseline and followed through death. Costs for ICU/hospital stays, hospice care and life-sustaining procedures (e.g., ventilation, resuscitation) received in the last week of life were aggregated. Generalized linear models were applied to test for cost differences in EOL care. Propensity score matching was used to reduce selection biases. Results 188 patients (31.2%) reported EOL discussions at baseline. After propensity score matching, the remaining 145 patients did not differ in socio-demographic characteristics, recruitment sites, illness acknowledgement or treatment preferences. Further analyses, adjusted by quintiles of propensity scores and significant confounders, revealed that the aggregate costs of care were $1876 (SE=177) for patients who reported EOL discussions compared with $2917 (SE=285) for patients who did not (in 2008 US dollars), a cost difference of $1041 (35.7% lower among patients who reported EOL discussions) [p=0.002]. Patients with higher costs had worse quality of death (Pearson partial r=-0.17, p=0.006) in their final week. Conclusions Advanced cancer patients who reported EOL conversations with physicians had significantly lower health care costs in their final week of life. Higher costs were associated with worse quality of death. PMID:19273778

  19. Framework for decision-making and management of end-of-life decisions in Intensive Care Units: A modified protocol.

    PubMed

    Kumar, Arun; Psirides, Alex; Maheshwari, Namrata; Chawla, Vipal; Mandal, Amit K

    2015-11-01

    End-of-life decisions are being made daily in Intensive Care Units worldwide. The spectrum of options varies from full-continued care, withholding treatment, withdrawing treatment, and active life-ending procedures depending on the institutional practices and legal framework. Considering the complexity of the situation and the legalities involved, it is important to have a structured approach toward these sensitive decisions. It does make sense to have a protocol that ensures proper documentation and helps ease the physicians involved in such decisions. Clear documentation in the format of a checklist would ensure consistency and help the entire medical team to be uniformly informed about the end-of-life plan.

  20. Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions

    PubMed Central

    Gillam, Lynn; Hynson, Jenny; Sullivan, Jane; Cossich, Mary; Wilkinson, Dominic

    2015-01-01

    Abstract Background: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. Aim: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. Design: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. Setting/Participants: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. Results: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. Conclusions: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians. PMID:26418215

  1. End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

    PubMed Central

    2011-01-01

    Background End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence. Methods Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format. Results Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and

  2. End-of-life care for homeless patients: "she says she is there to help me in any situation".

    PubMed

    Kushel, Margot B; Miaskowski, Christine

    2006-12-27

    Homelessness annually affects an estimated 2.3 million to 3.5 million individuals living in the United States. Homeless people face difficulties in meeting their basic needs. Many have substance abuse problems and mental illness, lack social support, and have no medical insurance. These challenges complicate the homeless patient's ability to engage in end-of-life advanced planning, adhere to medications, and find an adequate site to receive terminal care. Employing a multidisciplinary team to care for homeless patients can help address their needs and improve care. For patients who continue to use illicit substances while receiving end-of-life care, experts recommend scheduling frequent clinic visits, using long-acting pain medications, dispensing small quantities of medications at a time, and using a written pain agreement. Homeless people are less likely to have a surrogate decision maker. Clinicians should have frequent, well-documented conversations with these patients about end-of-life wishes. Homeless people can rarely use hospice services because they lack the financial resources for inpatient hospice and have neither the home nor the social support required for home hospice. Developing inpatient palliative care services at hospitals that serve many homeless people could improve the end-of-life care homeless people receive.

  3. Care of Patients at the End of Life: Pharmacotherapeutic Management of Pain.

    PubMed

    Scheetz, Allison; Ackermann, Richard J

    2016-08-01

    End-of-life care often involves management of pain. A patient's pain should be assessed using the Visual Analogue Scale, which uses a 0 to 10 score, with 0 indicating no pain and 10 the worst pain imaginable. Mild pain typically is managed with nonopioids (eg, acetaminophen, nonsteroidal anti-inflammatory drugs). More severe pain is managed with opioids. Opioid therapy should start with an immediate-release opioid to determine the dose needed to achieve pain control. This can be used to create a regimen with an extended-release formulation for daily pain management plus an immediate-release formulation for breakthrough pain. The breakthrough dose should be 10% to 15% of the total daily dosage administered every 2 to 3 hours. If there is a need to change opioids or convert from oral to parenteral opioids, a conversion table should be used to estimate the new dosage. Patients taking opioids often experience constipation, so also prescribing a laxative (eg, senna, sorbitol) is advised. Other adverse effects of opioids mainly occur when starting or increasing the dosage. These effects include nausea, sedation, neurotoxicity, and itching, and typically resolve in several days. Adjuvant drugs (eg, antidepressants, anticonvulsants) often are added to the opioid regimen, particularly for management of neuropathic pain. PMID:27490068

  4. Care of Patients at the End of Life: Surrogate Decision Making for Incapacitated Patients.

    PubMed

    Patel, Ami V; Ackermann, Richard J

    2016-08-01

    Competence is determined by a court of law, whereas physicians determine medical decision-making capacity (DMC). When patients lack DMC, a surrogate should be identified to make decisions. Ideally, patients will have created a durable power of attorney for health care. If a patient did not do this, state statutes specify which individuals can serve as surrogates; a current spouse typically is the first choice. Ideally, surrogates should use substituted judgment in making decisions. If this is not possible because the patient never shared end-of-life wishes with the surrogate, the surrogate can make decisions that, in the surrogate's opinion, are in the patient's best interests or that a reasonable individual would make. When no surrogate can be identified and a patient has no written advance directive, hospital ethics committees can assist with decisions, or, for some patients, a court will need to appoint a guardian. When there is a surrogate, difficulties can arise when family members disagree with the surrogate's decisions or when surrogates request treatments that, in the physician's opinion, would be futile or nonbeneficial. Hospital ethics committees may be able to assist in these situations, but appropriately conducted family meetings often resolve such difficulties. PMID:27490071

  5. Sedatives and Analgesics Given to Infants in Neonatal Intensive Care Units at the End of Life

    PubMed Central

    Zimmerman, Kanecia O.; Hornik, Christoph P.; Ku, Lawrence; Watt, Kevin; Laughon, Matthew M.; Bidegain, Margarita; Clark, Reese H.; Smith, P. Brian

    2015-01-01

    Objective To describe the administration of sedatives and analgesics at the end of life in a large cohort of infants in North American neonatal intensive care units (NICUs). Study design Data on mortality and sedative and analgesic administration were obtained from infants who died from 1997–2012 in 348 NICUs managed by the Pediatrix Medical Group. Sedatives and analgesics of interest included opioids (fentanyl, methadone, morphine), benzodiazepines (clonazepam, diazepam, lorazepam, midazolam), central alpha-2 agonists (clonidine, dexmedetomidine), ketamine, and pentobarbital. We used multivariable logistic regression to evaluate the association between administration of these drugs on the day of death and infant demographics and illness severity. Results We identified 19,726 infants who died. Of these, 6188 (31%) received a sedative or analgesic on the day of death; opioids were most frequently administered, 5366/19,726 (27%). Administration of opioids and benzodiazepines increased during the study period, from 16/283 (6%) for both in 1997 to 523/1465 (36%) and 295/1465 (20%) in 2012, respectively. Increasing gestational age, increasing postnatal age, invasive procedure within 2 days of death, more recent year of death, mechanical ventilation, inotropic support, and antibiotics on the day of death were associated with exposure to sedatives or analgesics. Conclusions Administration of sedatives and analgesics increased over time. Infants of older gestational age and those more critically ill were more likely to receive these drugs on the day of death. These findings suggest that drug administration may be driven by severity of illness. PMID:26012893

  6. Palliative and end of life care communication as emerging priorities in postgraduate medical education

    PubMed Central

    des Ordons, Amanda Roze; Ajjawi, Rola; Macdonald, John; Sarti, Aimee; Lockyer, Jocelyn; Hartwick, Michael

    2016-01-01

    Background Reliance on surveys and qualitative studies of trainees to guide postgraduate education about palliative and end of life (EOL) communication may lead to gaps in the curriculum. We aimed to develop a deeper understanding of internal medicine trainees’ educational needs for a palliative and EOL communication curriculum and how these needs could be met. Methods Mixed methods, including a survey and focus groups with trainees, and interviews with clinical faculty and medical educators, were applied to develop a broader perspective on current experiences and needs for further education. Quantitative descriptive and thematic analyses were conducted. Results Surveyed trainees were least confident and least satisfied with teaching in counseling about the emotional impact of emergencies and discussing organ donation. Direct observation with feedback, small group discussion, and viewing videos of personal consultations were perceived as effective, yet infrequently identified as instructional methods. Focus groups and interviews identified goals of care conversations as the highest educational priority, with education adapted to learner needs and accompanied by feedback and concurrent clinical and organizational support. Conclusions Our work expands on previous research describing needs for postgraduate education in palliative and EOL communication to include the importance of support, culture change, and faculty development, and provides insight into why such needs exist. PMID:27103952

  7. Improving end of life care: an information systems approach to reducing medical errors.

    PubMed

    Tamang, S; Kopec, D; Shagas, G; Levy, K

    2005-01-01

    -known precedent cases. The prototype uses the opensource CASPIAN shell developed by the University of Aberystwyth, Wales and is available by anonymous FTP. We will discuss and analyze the preliminary results we have obtained using this CBR tool. Our research suggests that automated information systems can be used to improve the quality of care at the end of life and disseminate expert level 'know how' to palliative care clinicians. We will present how our CBR prototype can be successfully deployed, capable of securely transferring information using a Secure File Transfer Protocol (SFTP) and using a JAVA CBR engine. PMID:15923765

  8. Education and training to enhance end-of-life care for nursing home staff: a systematic literature review

    PubMed Central

    Anstey, Sally; Powell, Tom; Coles, Bernadette; Hale, Rachel; Gould, Dinah

    2016-01-01

    Background The delivery of end-of-life care in nursing homes is challenging. This situation is of concern as 20% of the population die in this setting. Commonly reported reasons include limited access to medical care, inadequate clinical leadership and poor communication between nursing home and medical staff. Education for nursing home staff is suggested as the most important way of overcoming these obstacles. Objectives To identify educational interventions to enhance end-of-life care for nursing home staff and to identify types of study designs and outcomes to indicate success and benchmark interventions against recent international guidelines for education for palliative and end-of-life care. Design Thirteen databases and reference lists of key journals were searched from the inception of each up to September 2014. Included studies were appraised for quality and data were synthesised thematically. Results Twenty-one studies were reviewed. Methodological quality was poor. Education was not of a standard that could be expected to alter clinical behaviour and was evaluated mainly from the perspectives of staff: self-reported increase in knowledge, skills and confidence delivering care rather than direct evidence of impact on clinical practice and patient outcomes. Follow-up was often short term, and despite sound economic arguments for delivering effective end-of-life care to reduce burden on the health service, no economic analyses were reported. Conclusions There is a clear and urgent need to design educational interventions that have the potential to improve end-of-life care in nursing homes. Robust evaluation of these interventions should include impact on residents, families and staff and include economic analysis. PMID:27329513

  9. Practitioner-Raised Issues and End-of-Life Care for Adults with Down Syndrome and Dementia

    ERIC Educational Resources Information Center

    Watchman, Karen

    2005-01-01

    The author interviewed a small group of practitioners working in intellectual disability and palliative care settings about their perceptions of a number of end-of-life issues related to people with Down syndrome who were affected by dementia. The study, which took place in Scotland, identified a number of issues and perceptions expressed by the…

  10. End-of-Life and Palliative Care Issues in Medical and Nursing Schools in the United States

    ERIC Educational Resources Information Center

    Dickinson, George E.

    2007-01-01

    Medical and nursing schools in the United States have traditionally had a limited emphasis on end-of-life care. The present study is a comparison of these 2 professional programs' current offerings on death education. Data were gathered via a mailed survey from the 122 medical schools in 2005 and the 580 baccalaureate nursing programs in 2006.…

  11. Social Work and End-of-Life Care for Older People: A Historical Perspective

    ERIC Educational Resources Information Center

    Luptak, Marilyn

    2004-01-01

    End-of-life issues became increasingly complicated during the 20th century as profound shifts occurred in who died, how they died, and when they died. This article reviews societal changes related to death in the United States and chronicles the developments in social work practice with and for dying people and their families in the 20th century,…

  12. Pathways From Religion to Advance Care Planning: Beliefs About Control Over Length of Life and End-of-Life Values

    PubMed Central

    Garrido, Melissa M.

    2013-01-01

    Purpose of the Study: To evaluate the extent to which religious affiliation and self-identified religious importance affect advance care planning (ACP) via beliefs about control over life length and end-of-life values. Design and Methods: Three hundred and five adults aged 55 and older from diverse racial and socioeconomic groups seeking outpatient care in New Jersey were surveyed. Measures included discussion of end-of-life preferences; living will (LW) completion; durable power of attorney for healthcare (DPAHC) appointment; religious affiliation; importance of religion; and beliefs about who/what controls life length, end-of-life values, health status, and sociodemographics. Results: Of the sample, 68.9% had an informal discussion and 46.2% both discussed their preferences and did formal ACP (LW and/or DPAHC). Conservative Protestants and those placing great importance on religion/spirituality had a lower likelihood of ACP. These associations were largely accounted for by beliefs about God’s controlling life length and values for using all available treatments. Implications: Beliefs and values about control account for relationships between religiosity and ACP. Beliefs and some values differ by religious affiliation. As such, congregations may be one nonclinical setting in which ACP discussions could be held, as individuals with similar attitudes toward the end of life could discuss their treatment preferences with those who share their views. PMID:23161430

  13. Conflict resolution with end of life decisions in critical care settings.

    PubMed

    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

  14. Variation between End-of-Life Health Care Costs in Los Angeles and San Diego: Why Are They So Different?

    PubMed Central

    2011-01-01

    Abstract Context Small area differences in health care use between Boston, Massachusetts, and New Haven, Connecticut, are well known. However, we do not know whether factors believed to account for these variations explain differences between other geographic areas. Objective To explore differences in health care use between the California counties of Los Angeles (LA) and San Diego. Method Medicare data were obtained form the Dartmouth interactive website. In addition, hospital-level data were obtained for the California Office of Statewide Health Planning and Development (OSPHD). Health outcomes and self-reported disease prevalence were estimated from the California Health Interview Survey (CHIS). Results Physician supply was comparable between LA and San Diego. Fees per unit service were also equivalent. Hospital beds beds per 10,000 population were 35% higher in LA. Intensity of service use, particularly during the last 2 years of life, was significantly higher in LA, and costs were dramatically higher. Most of the differences were explained by discretionary hospital admissions, end-of-life care, and lower use of hospice care. Quality indicators favor San Diego. Conclusions Medical care, particularly at the end of life, is significantly more expensive in LA than in San Diego, yet quality measures tend to favor in San Diego. Non-emergent hospital admissions and inpatient care at the end of life are important contributors to the cost differences. There is little reason to believe that the greater spending for health care in LA results in better patient outcomes. PMID:21314574

  15. Public preferences and priorities for end-of-life care in Kenya: a population-based street survey

    PubMed Central

    2014-01-01

    Background End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. Methods Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. Results 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. Conclusion This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens’ preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home. PMID:24529217

  16. Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe

    PubMed Central

    2013-01-01

    Background Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology. Methods Nationwide representative Networks of General Practitioners (GPs) – ie epidemiological surveillance systems representative of all GPs in a country or large region of a country – in Belgium, the Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009–2010). All GPs were asked to identify patients who had died “non-suddenly”. The last three months of these patients’ lives was surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality. Results A total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in the Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries. Conclusion Via the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries

  17. End-of-life care for persons with advanced chronic obstructive pulmonary disease: report of a national interdisciplinary consensus meeting.

    PubMed

    Goodridge, D M; Marciniuk, D D; Brooks, D; van Dam, A; Hutchinson, S; Bailey, P; Baxter, S; Dorasamy, P; Dumont, S; Hassan, S; Hernandez, P; Kerigan, A; Rocker, G; Wilson, D; Young, J

    2009-01-01

    While systemic shortcomings in meeting the needs of individuals with progressive chronic illnesses at the end of life have been well documented, there is growing interest in improving both care and quality of life for persons with advanced chronic obstructive pulmonary disease (COPD). For instance, the American Thoracic Society has issued an official statement on palliative care for patients with respiratory diseases, affirming that the prevention, relief, reduction and soothing of symptoms "without affecting a cure" must become an integral component of standard care. A recent Medline search located 1015 articles related to palliative or end-of life care for people with COPD published between 2001 and 2008, compared with only 336 articles published before 2001. To address the needs of Canadian patients, an interdisciplinary consensus meeting, funded by the Canadian Institutes of Health Research and supported by the Canadian Thoracic Society, the Canadian Respiratory Health Professionals and the Canadian Lung Association was convened in Toronto, Ontario, on November 22, 2008, to begin examining the quality of end-of-life care for individuals with COPD in Canada. The present report summarizes the background to and outcomes of this consensus meeting.

  18. [Definitions, decision-making and documentation in end of life situations in the intensive care unit].

    PubMed

    Friesenecker, Barbara; Fruhwald, Sonja; Hasibeder, Walter; Hörmann, Christoph; Hoffmann, Maria Luise; Krenn, Claus G; Lenhart-Orator, Andrea; Likar, Rudolf; Pernerstorfer, Thomas; Pfausler, Bettina; Roden, Christian; Schaden, Eva; Valentin, A; Wallner, Jürgen; Weber, Günther; Zink, Michael; Peintinger, Michael

    2013-04-01

    The present work provides assistance for physicians concerning decision making in clinical borderline situations in the ICU. Based on a structured checklist the two fundamental aspects of any medical decision, the medical indication and the patient's preference are queried in a systematic way. Four possible steps of withholding and/or withdrawing therapy are discussed. Finally, recommendations regarding appropriate documentation of end of life decisions are provided.

  19. Preferences for professional versus informal care at end of life amongst African-American drug users with HIV/AIDS.

    PubMed

    Mitchell, Mary M; Robinson, Allysha C; Nguyen, Trang Q; Smith, Thomas J; Knowlton, Amy R

    2015-01-01

    With the advent of antiretroviral therapies, persons living with HIV/AIDS (PLHIVs) are living longer but with increased impairment and care needs. The purpose of this study was to assess whether a vulnerable population of PLHIVs preferred informal versus professional care when unable to care for themselves, and individual and support network factors associated with preference for informal care. The findings have potential implications for facilitating the population's informal care at end of life. Data were from the BEACON study, which examined social factors associated with health outcomes among former or current drug-using PLHIVs in Baltimore, MD. Structural equation modeling was used to identify individual and support network characteristics associated with PLHIVs' preference for informal (family or friends) compared to professional care. The structural equation model indicated preference for informal care was associated with female sex, greater informal care receipt, reporting one's main partner (i.e., boy/girlfriend or spouse) as the primary source of informal care, and a support network comprised greater numbers of female kin and persons supportive of the participant's HIV treatment adherence. Not asking for needed help to avoid owing favors was associated with preferring professional care. Findings suggest that interventions to promote informal end of life care should bolster supportive others' resources and skills for care provision and treatment adherence support, and should address perceived norms of reciprocity. Such intervention will help ensure community caregiving in a population with high needs for long-term care.

  20. Care of Patients at the End of Life: Advance Care Planning.

    PubMed

    Ackermann, Richard J

    2016-08-01

    Advance directives are legal documents that give instructions about how to provide care when patients develop life-threatening illnesses and can no longer communicate their wishes. Two types of documents are widely used-a living will and a durable power of attorney for health care. Most states also authorize physician orders for life-sustaining treatment. Physicians should encourage patients, particularly those with severe chronic or terminal conditions, to prepare advance directives. Medicare now reimburses billing codes for advance care consultations. Directions regarding cardiopulmonary resuscitation and artificial ventilation often are included in advance care plans, and use of artificial nutrition and hydration (ANH) also should be addressed, particularly for patients with advanced dementia. Evidence shows that in such patients, ANH does not prolong survival, increase comfort, or improve quality of life. Given the lack of benefit, physicians should recommend against use of ANH for patients with dementia. Finally, physicians should encourage use of hospice services by patients whose life expectancy is 6 months or less. Although Medicare and most other health care insurers cover hospice care, and despite evidence that patient and family satisfaction increase when hospice services are used, many patients do not use these services. PMID:27490070

  1. Advance Directives for End-of-Life Care and the Role of Health Education Specialists: Applying the Theory of Reasoned Action

    ERIC Educational Resources Information Center

    Tremethick, Mary Jane; Johnson, Maureen K.; Carter, Mary R.

    2011-01-01

    Quality end-of-life care is subjective and based on individual values and beliefs. An advance directive provides a legal means of communicating these values and beliefs, as well as preferences in regards to end-of-life care when an individual is no longer able to make his or her desires known. In many nations, advance directives are underused…

  2. Association of Early Patient-Physician Care Planning Discussions and End-of-Life Care Intensity in Advanced Cancer

    PubMed Central

    Tisnado, Diana M.; Walling, Anne M.; Dy, Sydney M.; Asch, Steven M.; Ettner, Susan L.; Kim, Benjamin; Pantoja, Philip; Schreibeis-Baum, Hannah C.; Lorenz, Karl A.

    2015-01-01

    Abstract Background: Early patient-physician care planning discussions may influence the intensity of end-of-life (EOL) care received by veterans with advanced cancer. Objective: The study objective was to evaluate the association between medical record documentation of patient-physician care planning discussions and intensity of EOL care among veterans with advanced cancer. Methods: This was a retrospective cohort study. Subjects were 665 veteran decedents diagnosed with stage IV colorectal, lung, or pancreatic cancer in 2008, and followed till death or the end of the study period in 2011. We estimated the effect of patient-physician care planning discussions documented within one month of metastatic diagnosis on the intensity of EOL care measured by receipt of acute care, intensive interventions, chemotherapy, and hospice care, using multivariate logistic regression models. Results: Veterans in our study were predominantly male (97.1%), white (74.7%), with an average age at diagnosis of 66.4 years. Approximately 31% received some acute care, 9.3% received some intensive intervention, and 6.5% had a new chemotherapy regimen initiated in the last month of life. Approximately 41% of decedents received no hospice or were admitted within three days of death. Almost half (46.8%) had documentation of a care planning discussion within the first month after diagnosis and those who did were significantly less likely to receive acute care at EOL (OR: 0.67; p=0.025). Documented discussions were not significantly associated with intensive interventions, chemotherapy, or hospice care. Conclusion: Early care planning discussions are associated with lower rates of acute care use at the EOL in a system with already low rates of intensive EOL care. PMID:26186553

  3. Using the Medical Record to Evaluate the Quality of End-of-Life Care in the Intensive Care Unit

    PubMed Central

    Glavan, Bradford J.; Engelberg, Ruth A.; Downey, Lois; Randall Curtis, J.

    2009-01-01

    Rationale We investigated whether proposed “quality markers” within the medical record are associated with family assessment of the quality of dying and death in the ICU. Objective To identify chart-based markers that could be used as measures for improving the quality of end-of-life care. Design A multi-center study conducting standardized chart abstraction and surveying families of patients who died in the ICU or within 24 hours of being transferred from an ICU. Setting ICUs at ten hospitals in the Northwest US. Patients 356 patients who died in the ICU or within 24 hours of transfer from an ICU. Measurements 1) the 22-item family-assessed Quality of Dying and Death (QODD-22); 2) a single item rating of the overall quality of dying and death (QODD-1). Analysis The associations of chart-based quality markers with QODD scores were tested using Mann-Whitney tests, Kruskal Wallis tests, or Spearman correlation coefficients as appropriate. Results Higher QODD-22 scores were associated with documentation of a living will (p = 0.03), absence of CPR performed in the last hour of life (p = 0.01), withdrawal of tube feeding (p = 0.04), family presence at time of death (p=0.02), and discussion of the patient’s wish to withdraw life support during a family conference (p<0.001). Additional correlates with a higher QODD-1 score included use of standardized comfort care orders and occurrence of a family conference (p≤0.05). Conclusions We identified chart-based variables associated with higher QODD scores. These could serve as targets for measuring and improving the quality of end-of-life care in the ICU. PMID:18379239

  4. End-of-life care in the intensive care unit: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine.

    PubMed

    Myburgh, John; Abillama, Fayez; Chiumello, Davide; Dobb, Geoff; Jacobe, Stephen; Kleinpell, Ruth; Koh, Younsuk; Martin, Claudio; Michalsen, Andej; Pelosi, Paolo; Torra, Lluis Blanch; Vincent, Jean-Louis; Yeager, Susan; Zimmerman, Janice

    2016-08-01

    End-of-life care in the intensive care unit (ICU) was identified as an objective in a series of Task Forces developed by the World Federation of Societies of Intensive and Critical Care Medicine Council in 2014. The objective was to develop a generic statement about current knowledge and to identify challenges relevant to the global community that may inform regional and local initiatives. An updated summary of published statements on end-of-life care in the ICU from national Societies is presented, highlighting commonalities and differences within and between international regions. The complexity of end-of-life care in the ICU, particularly relating to withholding and withdrawing life-sustaining treatment while ensuring the alleviation of suffering, within different ethical and cultural environments is recognized. Although no single statement can therefore be regarded as a criterion standard applicable to all countries and societies, the World Federation of Societies of Intensive and Critical Care Medicine endorses and encourages the role of Member Societies to lead the debate regarding end-of-life care in the ICU within each country and to take a leading role in developing national guidelines and recommendations within each country.

  5. End of life and ethnicity.

    PubMed

    Valente, Sharon M

    2004-01-01

    The anticipated rise in the elderly population with chronic and life-threatening illness has been well documented. The purpose of this article is to recommend educational programs in end-of-life care, with an emphasis on culture and therapeutic responses to terminally ill patients to help nurses facilitate end-of-life discussions, consultation, and advocacy.

  6. Illicit drug use as a challenge to the delivery of end-of-life care services to homeless persons: perceptions of health and social services professionals.

    PubMed

    McNeil, Ryan; Guirguis-Younger, Manal

    2012-06-01

    Homeless persons tend to die younger than the housed population and have complex, often unmet, end-of-life care needs. High levels of illicit drug use among this population are a particular challenge for health and social services professionals involved in end-of-life care services delivery. This article explores the challenges of end-of-life care services to homeless illicit drug users based on data collected during a national study on end-of-life care services delivery to homeless persons in Canada. The authors conducted qualitative interviews with 50 health and social services professionals involved in health services delivery to homeless persons in five cities. Interviews were transcribed verbatim and analysed thematically. Themes were organised into two domains. First, barriers preventing homeless illicit drug users from accessing end-of-life care services, such as competing priorities (e.g. withdrawal management), lack of trust in healthcare providers and discrimination. Second, challenges to end-of-life care services delivery to this population in health and social care settings, including non-disclosure of illicit drug use, pain and symptom management, interruptions in care, and lack of experience with addictions. The authors identify a need for increased research on the role of harm reduction in end-of-life care settings to address these challenges.

  7. Truth Telling and Treatment Strategies in End-of-Life Care in Physician-Led Accountable Care Organizations: Discrepancies Between Patients' Preferences and Physicians' Perceptions.

    PubMed

    Huang, Hsien-Liang; Cheng, Shao-Yi; Yao, Chien-An; Hu, Wen-Yu; Chen, Ching-Yu; Chiu, Tai-Yuan

    2015-04-01

    Providing patient-centered care from preventive medicine to end-of-life care in order to improve care quality and reduce medical cost is important for accountable care. Physicians in the accountable care organizations (ACOs) are suitable for participating in supportive end-of-life care especially when facing issues in truth telling and treatment strategy. This study aimed to investigate patients' attitudes toward truth telling and treatment preferences in end-of-life care and compare patients' attitudes with their ACOs physicians' perceptions.This nationwide study applied snowball sampling to survey physicians in physician-led ACOs and their contracted patients by questionnaire from August 2010 to July 2011 in Taiwan. The main outcome measures were beliefs about palliative care, attitudes toward truth telling, and treatment preferences.The data of 314 patients (effective response rate = 88.7%) and 177 physicians (88.5%) were analyzed. Regarding truth telling about disease prognosis, 94.3% of patients preferred to be fully informed, whereas only 80% of their physicians had that perception (P < 0.001). Significant differences were also found in attitudes toward truth telling even when encountering terminal disease status (98.1% vs 85.3%). Regarding treatment preferences in terminal illness, nearly 90% of patients preferred supportive care, but only 15.8% of physicians reported that their patients had this preference (P < 0.001).Significant discrepancies exist between patients' preferences and physicians' perceptions toward truth telling and treatment strategies in end-of-life care. It is important to enhance physician-patient communication about end-of-life care preferences in order to achieve the goal of ACOs. Continuing education on communication about end-of-life care during physicians' professional development would be helpful in the reform strategies of establishing accountable care around the world.

  8. Experiences in end-of-life care in the Intensive Care Unit: A survey of resident physicians

    PubMed Central

    Mohamed, Zubair Umer; Muhammed, Fazil; Singh, Charu; Sudhakar, Abish

    2016-01-01

    Background and Aims: The practice of intensive care includes withholding and withdrawal of care, when appropriate, and the goals of care change around this time to comfort and palliation. We decided to survey the attitudes, training, and skills of intensive care residents in relation to end-of-life (EoL) care. All residents at our institute who has worked for at least a month in an adult Intensive Care Unit were invited to participate. Materials and Methods: After Institutional Ethics Committee approval, a Likert-scale questionnaire, divided into five composite measures of EoL skills including training and attitude, was handed over to individual residents and completed data were anonymized. Frequency and descriptive analysis was performed for the demographic variables. Central tendency, variability, and reliability were examined for the five composite measures. Scale internal consistency was checked by Cronbach's coefficient alpha. Multivariate forward conditional regression analysis was conducted to examine the association of demographic data or EoL experience to composite measures. Results: Of the 170 eligible residents, we received 120 (70.5%) responses. Conclusions: Internal medicine residents have more experience in caring for dying patients and conducting EoL discussions. Even though majority of participants reported that they are comfortable with the concept of EoL care, this does not always reflect the actual practice in the hospital. There is a need for further training in skills around EoL care. As this is a self-assessment survey, the specific measures of attitudes and skills in EoL are poorly reflected, indicating a need for further research. PMID:27630457

  9. Experiences in end-of-life care in the Intensive Care Unit: A survey of resident physicians

    PubMed Central

    Mohamed, Zubair Umer; Muhammed, Fazil; Singh, Charu; Sudhakar, Abish

    2016-01-01

    Background and Aims: The practice of intensive care includes withholding and withdrawal of care, when appropriate, and the goals of care change around this time to comfort and palliation. We decided to survey the attitudes, training, and skills of intensive care residents in relation to end-of-life (EoL) care. All residents at our institute who has worked for at least a month in an adult Intensive Care Unit were invited to participate. Materials and Methods: After Institutional Ethics Committee approval, a Likert-scale questionnaire, divided into five composite measures of EoL skills including training and attitude, was handed over to individual residents and completed data were anonymized. Frequency and descriptive analysis was performed for the demographic variables. Central tendency, variability, and reliability were examined for the five composite measures. Scale internal consistency was checked by Cronbach's coefficient alpha. Multivariate forward conditional regression analysis was conducted to examine the association of demographic data or EoL experience to composite measures. Results: Of the 170 eligible residents, we received 120 (70.5%) responses. Conclusions: Internal medicine residents have more experience in caring for dying patients and conducting EoL discussions. Even though majority of participants reported that they are comfortable with the concept of EoL care, this does not always reflect the actual practice in the hospital. There is a need for further training in skills around EoL care. As this is a self-assessment survey, the specific measures of attitudes and skills in EoL are poorly reflected, indicating a need for further research.

  10. Ethical issues in end-of-life geriatric care: the approach of three monotheistic religions-Judaism, Catholicism, and Islam.

    PubMed

    Clarfield, A Mark; Gordon, Michael; Markwell, Hazel; Alibhai, Shabbir M H

    2003-08-01

    Ethical dilemmas pervade modern geriatric medicine. What is considered right or wrong will differ depending on, among other things, the patient's religion. The three Abrahamic monotheistic religions, Judaism, Christianity (its Catholic variant), and Islam all have carefully considered positions on medical ethics. Although much is held in common, there are significant differences. The authors present three clinical cases, each of which presents ethical dilemmas typical of geriatric care, especially at the end of life. On the basis of these scenarios, the normative ethical position of each religion is compared and contrasted. It is hoped that this approach will offer the geriatrician a useful approach to treating patients in an increasingly multicultural society.

  11. Speaking about dying in the intensive care unit, and its implications for multidisciplinary end-of-life care.

    PubMed

    Iedema, Rick; Sorensen, Ros; Braithwaite, Jeffrey; Turnbull, Elizabeth

    2004-01-01

    This article addresses how professionals working in an intensive care unit in Australia speak about dying, with particular reference to the contradictions and complexities that characterize their work in this setting. The article reflects on the incommensurabilities in these clinicians' talk, and the consequences of this for how different professionals work together and care for extremely ill patients. Examples are drawn from talk recorded during ward rounds and focus groups. The article argues that intensive care units are settings where being reflexive about one's work and assumptions is especially difficult because it involves negotiating decisions and taking moral responsibility for decisions affecting very sick patients. These decisions and responsibilities put into sharp relief the 'wicked problems and tragic choices' of end-of-life existence and of intensive care in specific. This article shows some of the complex ways in which specific clinicians' discourse absorbs and manifests these tensions and responsibilities. The article concludes that these kinds of complexities are unlikely to be resolved with reference to formal knowledge or in-principle conviction, and that a new interactive basis needs to be found where clinicians can rehearse alternative ways of speaking with which to approach each other, the dying, and their families.

  12. Non-response in a survey of physicians on end-of-life care for the elderly

    PubMed Central

    2011-01-01

    Background Physicians are quite often surveyed with the aim to investigate their opinions regarding provision and improvement of health care. However, in many cases response rates tend to be rather low. The aim of the study is to reflect methodological aspects regarding survey conduction and to analyse factors that cause physicians to take part in a study on delivering end-of-life care for the elderly. Methods N = 4,727 physicians in Lower Saxony, Germany, received a standardised questionnaire on their attitudes about end-of-life care for the elderly. Non-responders were asked to state the reasons for non-participation. Comparison of the sociodemographic characteristics between responders and non-responders, and evaluation of the reasons for non-participation were made. Results The response rate to the questionnaire on end-of-life care for the elderly was 40% (n = 1,892). Of the non-responders to the questionnaire, 12.8% (n = 364) stated the reasons for non-participation. Overall, the response rate to the questionnaire varied with specialty and location of the practice: radiotherapists answered significantly more frequently than other categories of physician (e.g. general practitioners) and physicians in rural areas significantly more frequently than their colleagues in urban areas. The reasons most frequently given for non-participation were "Not concerned with the subject" and "No time". Conclusions The varying rates of response indicate that the survey was not sufficiently relevant to all groups of physicians, or that the awareness of the topic may be partly underdeveloped. PMID:21943379

  13. Directly Observed Patient–Physician Discussions in Palliative and End-of-Life Care: A Systematic Review of the Literature

    PubMed Central

    Reid, M. Carrington; Shengelia, Rouzi; Adelman, Ronald D.

    2010-01-01

    Abstract Objectives To review studies that used direct observation (i.e., videotaping or audiotaping) methods in palliative/end-of-life care communication research. Design Descriptive thematic analysis. Setting : Multinational studies were conducted in both the outpatient and inpatient setting. Measurements Extensive bibliographic searches (January 1, 1998 to July 31, 2009) of English-language literature involving physician–patient (or physician–family) interactions were conducted and augmented by reviews of reference listings. Three investigators independently abstracted key information from each article. Results Of the 20 retained articles, most enrolled young-old participants (mean age, 60 years) who were white and had a cancer diagnosis. Patient/family participation rates ranged from 68% to 89% demonstrating feasibility of this approach when studying palliative/end-of-life care communication issues. Four common themes were identified: (1) physicians focus on medical/technical and avoid emotional/quality of life issues; (2) sensitive topics are perceived by physicians to take longer to discuss and often do take longer to discuss; (3) physicians dominate discussions; and (4) patient/family satisfaction is associated with supportive physician behaviors. Conclusions This study demonstrates that direct observation methods can be feasibly used when studying physician–patient/physician–family communication in palliative/end-of-life care, but few investigations have utilized this approach. This article highlights areas that need improvement, including physicians' ability to address patient/family emotional issues and provide what patients and families find most satisfying (participation and support). A particular focus on older patients and patients with end-stage or late-stage chronic (noncancer) illness, the adaptation/application of existing communication measurement tools to capture palliative care communication issues, and development of corresponding

  14. Providing hospice care to children and young adults: A descriptive study of end-of-life organizations

    PubMed Central

    Lindley, Lisa; Mark, Barbara; Lee, Shoou-Yih Daniel

    2010-01-01

    Over the past two decades, end-of-life organizations have served an increasing number of children and young adults and expanded services important to terminally ill youth, and yet we know little about these organizations. The purpose of this study was to describe the characteristics of end-of-life care organizations that admitted children and young adults to hospice care. Using data from the 2007 National Hospice and Palliative Care Organization (NHPCO) Survey, we conducted a descriptive analysis of operational, mission, market, and financial characteristics, and explored a sub-analysis by age group. Our analysis revealed that these organizations had similar profit status, ownership, and payer mix when compared to the hospice industry. However, they differed in agency type, referrals, organizational size, geographic location, team member caseload, and revenues. We also found important differences in organizations that provided hospice care by age groups (infants, toddler, school-age children, and adolescents/young adults) in geographic location, region, agency type, accreditation, and team member caseload. These findings have managerial and policy implications. PMID:20606723

  15. First Medicare Demonstration of Concurrent Provision of Curative and Hospice Services for End-of-Life Care.

    PubMed

    Harrison, Krista L; Connor, Stephen R

    2016-08-01

    Hospice developed in the United States in the 1970s as a way to address unmet needs for end-of-life care: support for pain and symptom management provided in the location and manner that the patient and family prefer. In Europe and Australia, hospice is available from the time of diagnosis of an advanced life-limiting illness onward, but in the United States, the Medicare hospice benefit restricts eligibility for these services to patients who no longer receive curative treatment. We provide background and analysis of the first Medicare hospice demonstration in 35 years that will test the concurrent provision of curative and hospice services for terminally ill individuals with a life expectancy of six months or less. This demonstration is a harbinger of potential policy changes to hospice and palliative care in the United States that could reduce barriers to end-of-life care that aligns with patient and family preferences as the demand for care increases with an aging population. PMID:27310352

  16. First Medicare Demonstration of Concurrent Provision of Curative and Hospice Services for End-of-Life Care.

    PubMed

    Harrison, Krista L; Connor, Stephen R

    2016-08-01

    Hospice developed in the United States in the 1970s as a way to address unmet needs for end-of-life care: support for pain and symptom management provided in the location and manner that the patient and family prefer. In Europe and Australia, hospice is available from the time of diagnosis of an advanced life-limiting illness onward, but in the United States, the Medicare hospice benefit restricts eligibility for these services to patients who no longer receive curative treatment. We provide background and analysis of the first Medicare hospice demonstration in 35 years that will test the concurrent provision of curative and hospice services for terminally ill individuals with a life expectancy of six months or less. This demonstration is a harbinger of potential policy changes to hospice and palliative care in the United States that could reduce barriers to end-of-life care that aligns with patient and family preferences as the demand for care increases with an aging population.

  17. Something's ironic in Denmark: an otherwise progressive welfare state lags well behind in care of patients at the end of life.

    PubMed

    Hoefler, James M; Vejlgaard, Tove Bahn

    2011-12-01

    Tremendous strides have been made in the last two decades with regard to the quality of palliative care available to patients at the end of life. But progress has not been uniform, even among countries in the same region of the world. The objective of this study is to describe, in a comparative context, the current status of end-of-life palliative care in Denmark using quantitative research published in the past five years. This study's conclusions, based on a synthesis of the research, suggest that despite its well earned reputation as a generally progressive welfare state, Denmark tends to trail well behind its European neighbors when it comes to end-of-life care. Understanding the cultural forces that underlie this reality may help Danish health care professionals and policy makers overcome the barriers that stand in the way of providing state-of-the-art medical care to patients who suffer at the end of life.

  18. Mentoring the Next Generation of Social Workers in Palliative and End-of-Life Care: The Zelda Foster Studies Program.

    PubMed

    Gardner, Daniel S; Gerbino, Susan; Walls, Jocelyn Warner; Chachkes, Esther; Doherty, Meredith J

    2015-01-01

    As Americans live longer with chronic illnesses, there is a growing need for social workers with the knowledge and skills to deliver quality palliative care to older adults and their families. Nevertheless, there remains a critical shortage of social workers prepared to provide quality palliative and end-of-life care (PELC) and to maintain the field into the next generation. Formal mentorship programs represent an innovative approach to enhancing practice, providing support and guidance, and promoting social work leadership in the field. This article reviews the literature on mentorship as an approach to professional and leadership development for emerging social workers in PELC. The Zelda Foster Studies Program in Palliative and End-of-Life Care bolsters competencies and mentors social workers in PELC over the trajectory of their careers, and enhances the capacity in the field. Findings from the first six years of two components of the ZF Program are examined to illustrate the feasibility, benefits, and challenges of formal mentorship programs. The authors describe the background, structure, and evaluation of the initiative's mentorship programs, and discuss the implications of mentorship in PELC for social work education, practice, and research. PMID:26380922

  19. Nurses' perceptions of factors influencing patient decision support for place of care at the end of life.

    PubMed

    Murray, Mary Ann; Wilson, Keith; Kryworuchko, Jennifer; Stacey, Dawn; O'Connor, Annette

    2009-01-01

    Although patients have more choices about where to receive care as death approaches, they often need help with decision making. This study identified factors that influence nurses' provision of decision support. A total of 22 nurses, from 3 health networks, participated in semistructured interviews. Overall, nurses held favorable attitudes toward providing decision support for place of care at end of life. Overlap between other professionals' roles and nurses' clinical experience affected nurses' decision support behaviors. Although nurses considered decision support to be part of patient-centered care, they report a lack of skills, confidence, and tools to help them provide it. These findings confirm the need to develop practical postlicensure education strategies and ways to embed patient decision support tools into systems of care.

  20. Direct Engagement With Communities and Interprofessional Learning to Factor Culture Into End-of-Life Health Care Delivery.

    PubMed

    Boucher, Nathan A

    2016-06-01

    Aging patients with advanced or terminal illnesses or at the end of their lives become highly vulnerable when their cultural needs-in terms of ethnic habits, religious beliefs, and language-are unmet. Cultural diversity should be taken into account during palliative care delivery (i.e., noncurative, supportive care during advanced illness or at the end of life). Providers and systems deliver disparate palliative care to diverse patients. I present 2 strategies to improve how culturally diverse populations are served during advanced illness: (1) health service provider assessment of local populations to understand service populations' cultural needs and guide services and policy; and (2) interprofessional education to improve multicultural understanding among the health care workforce. PMID:26985609

  1. Formative evaluation of a multi-component, education-based intervention to improve processes of end-of-life care.

    PubMed

    Williams, Beverly R; Woodby, Lesa L; Bailey, F Amos; Burgio, Kathryn L

    2014-01-01

    A multicomponent, palliative care, education-based intervention was implemented in six Veterans Affairs Medical Centers in the southeast United States. The intervention comprised onsite staff training plus supporting written materials, installation of an electronic order set, and follow-up consultations. Training included large-group didactic presentations, small-group clinical demonstrations, and one-on-one consultations. The intervention strategy was targeted broadly to hundreds of hospital providers, including physician, nursing, and ancillary staff. The purpose was to train staff in identifying actively dying patients and implementing best practices of home-based hospice care. A formative evaluation was conducted utilizing semistructured telephone interviews with key informants from each site. Qualitative data analysis revealed processes that facilitated or impeded uptake of the intervention. Results will be used to inform ongoing and future clinical initiatives and optimize future implementation of education-based interventions to improve adoption of best practices for end-of-life care within acute care settings.

  2. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy

    PubMed Central

    2011-01-01

    Background Evidence of low end-of-life (EoL) care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. Methods Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. Results Thirteen reviews (2001-2009) met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven). The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. Conclusions A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter-relatedness of factors leading to low service use was recognised and reflected in reviews' recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy's evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias. PMID:21635738

  3. Symptom Control at the End of Life.

    PubMed

    Kreher, Margaret

    2016-09-01

    Symptom control at the end of life is an identified ongoing gap in end-of-life care. Increased demand for high-quality symptom control; limited supply of specialty trained clinicians; lack of consistent high-quality evidence-based interventions; and education deficits among clinicians, patients, and families in end-of-life processes contribute to this gap. High-value end-of-life care is centered on high-quality communication about goals of care. This article reviews primary palliative care concepts of communication and symptom control to provide a framework for primary care physicians to use in the care of patients at the end of life. PMID:27542430

  4. Toward a population-based approach to end-of-life care surveillance in Canada: initial efforts and lessons.

    PubMed

    Lau, Francis; Downing, Michael; Tayler, Carolyn; Fassbender, Konrad; Lesperance, Mary; Barnett, Jeff

    2013-01-01

    This paper describes a project undertaken by the Hospice Palliative End-of-Life Care Surveillance Team Network--one of four Cancer Surveillance and Epidemiology Networks established by the Canadian Partnership Against Cancer in 2009 to create information products that can be used to inform cancer control. The project was designed to improve the quality and use of existing electronic patient databases in its member organizations. The project's intent was to better understand terminally ill cancer patients in their final year of life, with noncancer as comparison. The network created an early design for a Web-based end-of-life care surveillance system prototype. Using a flagging process, anonymized data sets on cancer/ noncancer palliative patients and those who died in 2008-2009 were extracted and analyzed. The Australian palliative approach was adapted as the conceptual model based on the data sets available. Common data elements were defined then mapped to local data sets to create a common data set. Information products were created as online reports. Throughout the project, members were engaged in knowledge translation. Overall, the project was well received by network members. There are still major data-quality and linkage issues that require further work.

  5. [Advance Care Planning and Decisions to limit treatment at the end of life - the view from medical ethics and psychooncology].

    PubMed

    Winkler, Eva C; Heußner, Pia

    2016-03-01

    Decisions to limit treatment are important in order to avoid overtreatment at the end of life. They proceed more than half of expected deaths in Europe and the US, but are not always communicated with the patient in advance. One reason for non-involvement is that conversations that prepare patients for end-of-life decisions and work out their preferences do not take place on a regular basis. At the same time there is growing evidence that such communication improves patients' quality of life, reduces anxiety and depression and allows patients to develop a realistic understanding of their situation - which in turn is a prerequisite for shared decision making about limiting treatment. In this paper we define "treatment limitation" and explain the medical ethics perspective. The main focus, however, is on the causes that hinder advanced care planning and conversations about limiting treatment in the care of patients with advanced disease. Finally the evidence for approaches to improve the situation is presented with concrete suggestions for solutions.

  6. Is a good death possible in Australian critical and acute settings?: physician experiences with end-of-life care

    PubMed Central

    2014-01-01

    Background In Australia approximately 70% of all deaths are institutionalised but over 15% of deaths occur in intensive care settings where the ability to provide a “good death” is particularly inhibited. Yet, there is a growing trend for death and dying to be managed in the ICU and physicians are increasingly challenged to meet the new expectations of their specialty. This study examined the unexplored interface between specialised Australian palliative and intensive care and the factors influencing a physician’s ability to manage deaths well. Method A qualitative investigation was focused on palliative and critical/acute settings. A thematic analysis was conducted on semi-structured in-depth interviews with 13 specialist physicians. Attention was given to eliciting meanings and experiences in Australian end-of-life care. Results Physicians negotiated multiple influences when managing dying patients and their families in the ICU. The way they understood and experienced end-of-life care practices was affected by cultural, institutional and professional considerations, and personal values and beliefs. Interpersonal and intrapsychic aspects highlighted the emotional and psychological relationship physicians have with patients and others. Many physicians were also unaware of what their cross-disciplinary colleagues could or could not do; poor professional recognition and collaboration, and ineffective care goal transition impaired their ability to assist good deaths. Experience was subject to the efficacy of physicians in negotiating complex bedside dynamics. Conclusions Regardless of specialty, all physicians identified the problematic nature of providing expert palliation in critical and acute settings. Strategies for integrating specialised palliative and intensive care were offered with corresponding directions for future research and clinical development. PMID:25147481

  7. End-of-life communication in Korean older adults: With focus on advance care planning and advance directives.

    PubMed

    Shin, Dong Wook; Lee, Ji Eun; Cho, BeLong; Yoo, Sang Ho; Kim, SangYun; Yoo, Jun-Hyun

    2016-04-01

    The present article aimed to provide a comprehensive review of current status of end-of-life (EOL) care and sociocultural considerations in Korea, with focus on the EOL communication and use of advance directives (AD) in elderly Koreans. Through literature review, we discuss the current status of EOL care and sociocultural considerations in Korea, and provide a look-ahead. In Korea, patients often receive life-sustaining treatment until the very end of life. Advance care planning is rare, and most do-not-resuscitate decisions are made between the family and physician at the very end of patient's life. Koreans, influenced mainly by Confucian tradition, prefer a natural death and discontinuation of life-sustaining treatment. Although Koreans generally believe that death is natural and unavoidable, they tend not to think about or discuss death, and regard preparation for death as unnecessary. As a result, AD are completed by just 4.7% of the general adult population. This situation can be explained by several sociocultural characteristics including opting for natural death, wish not to burden others, preference for family involvement and trust in doctor, avoidance of talking about death, and filial piety. Patients often receive life-sustaining treatment until the very EOL, advance care planning and the use of AD is not common in Korea. This was related to unique sociocultural characteristics of Korea. A more active role of physicians, development of a more deliberate EOL discussion process, development of culturally appropriate AD and promotion of advance care planning might be required to provide good EOL care in Korea.

  8. Death in the Digital Age: A Systematic Review of Information and Communication Technologies in End-of-Life Care

    PubMed Central

    Killoran, Peter; Shegog, Ross; Bruera, Eduardo

    2016-01-01

    Abstract Background: End-of-life (EOL) communication plays a critical role in ensuring that patients receive care concordant with their wishes and experience high quality of life. As the baby boomer population ages, scalable models of end-of-life communication will be needed to ensure that patients receive appropriate care. Information and communication technologies (ICTs) may help address the needs of this generation; however, few resources exist to guide the use of ICTs in EOL care. Objective: The primary objective was to identify the ICTs being used in EOL communication. The secondary objective was to compare the effectiveness of different ICTs in EOL communication. Methods: The study was a systematic review, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched seven databases for experimental and observational studies on EOL communication between doctors and patients using ICTs, published in 1997–2013. Results: The review identified 38 relevant articles. Eleven types of technology were identified: video, website, telephone, videoconferencing, e-mail, telemonitoring, Internet search, compact disc, fax, PalmPilot, and short message service (SMS) text messaging. ICTs were most commonly used to provide information or education, serve as decision aids, promote advance care planning (ACP), and relieve physical symptom distress. Conclusions: The use of ICTs in EOL care is a small but growing field of research. Additional research is needed to adapt older, analog technologies for use in the digital age. Many of the interventions discussed in this review do not take full advantage of the affordances of mobile, connected health ICTs. The growing evidence base for e-health applications in related fields should guide future interventions in EOL care. PMID:26713368

  9. Drugs, cancer and end-of-life care: A case study of pharmaceuticalization?

    PubMed Central

    Davis, Courtney

    2015-01-01

    There is evidence from some countries of a trend towards increasingly aggressive pharmacological treatment of patients with advanced, incurable cancer. To what extent should this be understood as a progressive development in which technological innovations address previously unmet needs, or is a significant amount of this expansion explained by futile or even harmful treatment? In this article it is argued that while some of this growth may be consistent with a progressive account of medicines consumption, part of the expansion is constituted by the inappropriate and overly aggressive use of drugs. Such use is often explained in terms of individual patient consumerism and/or factors to do with physician behaviour. Whilst acknowledging the role of physicians and patients' expectations, this paper, drawing on empirical research conducted in the US, the EU and the UK, examines the extent to which upstream factors shape expectations and drive pharmaceuticalisation, and explores the value of this concept as an analytical tool. PMID:25533871

  10. Drugs, cancer and end-of-life care: a case study of pharmaceuticalization?

    PubMed

    Davis, Courtney

    2015-04-01

    There is evidence from some countries of a trend towards increasingly aggressive pharmacological treatment of patients with advanced, incurable cancer. To what extent should this be understood as a progressive development in which technological innovations address previously unmet needs, or is a significant amount of this expansion explained by futile or even harmful treatment? In this article it is argued that while some of this growth may be consistent with a progressive account of medicines consumption, part of the expansion is constituted by the inappropriate and overly aggressive use of drugs. Such use is often explained in terms of individual patient consumerism and/or factors to do with physician behaviour. Whilst acknowledging the role of physicians and patients' expectations, this paper, drawing on empirical research conducted in the US, the EU and the UK, examines the extent to which upstream factors shape expectations and drive pharmaceuticalisation, and explores the value of this concept as an analytical tool. PMID:25533871

  11. Improving end-of-life care for ESRD patients: an initiative for professionals.

    PubMed

    Moss, Alvin H; Armistead, Nancy C

    2013-09-01

    The Coalition for Supportive Care of Kidney Patients convened subject matter experts (SMEs) to assess the current state of palliative care for pre-dialysis (chronic kidney disease) and end-stage renal disease patients (stages 3-5). The SMEs noted that in the final month of life, dialysis patients have the higher percentage of hospitalizations, longer length of stay, greater intensive care admissions, and higher number of deaths in hospitals than cancer or heart failure patients, but use hospice only half as much as these two groups. The group identified a strategic approach and framework for achieving specific aims to improve palliative care education of health care providers, raise awareness of supportive care resources, define palliative care skills for nephrologists, and continue the implementation of shared decision-making for individualized patient-centered care. PMID:24266270

  12. Cancer Care Experiences and the Use of Complementary and Alternative Medicine at End of Life in Nova Scotia’s Black Communities

    PubMed Central

    Maddalena, Victor J.; Bernard, Wanda Thomas; Etowa, Josephine; Murdoch, Sharon Davis; Smith, Donna; Jarvis, Phyllis Marsh

    2016-01-01

    Purpose This qualitative study examines the meanings that African Canadians living in Nova Scotia, Canada, ascribe to their experiences with cancer, family caregiving, and their use of complementary and alternative medicine (CAM) at end of life. Design Case study methodology using in-depth interviews were used to examine the experiences of caregivers of decedents who died from cancer in three families. Findings For many African Canadians end of life is characterized by care provided by family and friends in the home setting, community involvement, a focus on spirituality, and an avoidance of institutionalized health services. Caregivers and their families experience multiple challenges (and multiple demands). There is evidence to suggest that the use of CAM and home remedies at end of life are common. Discussion The delivery of palliative care to African Canadian families should consider and support their preference to provide end-of-life care in the home setting. PMID:20220031

  13. A Palliative Approach to Dialysis Care: A Patient-Centered Transition to the End of Life

    PubMed Central

    Moss, Alvin H.; Cohen, Lewis M.; Fischer, Michael J.; Germain, Michael J.; Jassal, S. Vanita; Perl, Jeffrey; Weiner, Daniel E.; Mehrotra, Rajnish

    2014-01-01

    As the importance of providing patient-centered palliative care for patients with advanced illnesses gains attention, standard dialysis delivery may be inconsistent with the goals of care for many patients with ESRD. Many dialysis patients with life expectancy of <1 year may desire a palliative approach to dialysis care, which focuses on aligning patient treatment with patients’ informed preferences. This commentary elucidates what comprises a palliative approach to dialysis care and describes its potential and appropriate use. It also reviews the barriers to integrating such an approach into the current clinical paradigm of care and existing infrastructure and outlines system-level changes needed to accommodate such an approach. PMID:25104274

  14. Documentation of patients' participation in care at the end of life.

    PubMed

    Lindström, Irma; Gaston-Johansson, Fannie; Danielson, Ella

    2006-07-01

    The aim of this study was to describe how patients' participation in the care they received was documented in their health care records during the last three months of their lives. Two hundred and twenty-nine deceased adult persons were randomly identified from 12 municipalities in a Swedish county and their records were selected from different health care units. Content analysis was used to analyse the text. Four categories of patient participation were described: refusing offered care and treatments; appealing for relief; desire for everyday life; and making personal decisions. The most common way for these patients to be involved in their care at the end of their life was by refusal of the treatment and care offered. Characteristic of the different ways of participation were the diverse activities represented. The description of patients' involvement in their life situation at this time indicated their dissociation from the health care offered more than consenting to it.

  15. A workshop to teach medical students communication skills and clinical knowledge about end-of-life care.

    PubMed

    Torke, Alexia M; Quest, Tammie E; Kinlaw, Kathy; Eley, J William; Branch, William T

    2004-05-01

    We describe a half-day workshop to teach third-year medical students three focused end-of-life care skills: breaking bad news, discussing advance directives, and assessing and managing pain. Our workshop included a readers' theater exercise and three role-play exercises. In two of the workshops, faculty members played the role of patients. We used readers' theater to engage the students on an emotional level and set a reflective tone for the workshop. Evaluations reflected that most respondents felt that the workshop enhanced their understanding and ability to address these skills with patients. By 6 months, many students reported applying these skills to patient care in a way they thought was effective.

  16. Preparing the Pediatric Dentist for Palliative and End-of-life Care.

    PubMed

    Sarvas, Elise W; Schwantes, Scott A; Karp, Jeffrey M

    2016-01-01

    Pediatric dentists are the primary providers of dental homes for children with life-threatening and complex chronic conditions. These children are increasingly living at home and seeking health care in community-based settings, including dental offices. Pediatric dentists may feel ill prepared to assume the roles and responsibilities of a pediatric palliative care provider due to limited education and training during dental school and residency; however, they should be sensitive to the palliative care needs of children and families. The purpose of this clinical article was to highlight palliative care scenarios in pediatric dentistry and provide actionable resources to empower pediatric dentists to gather health care information, make informed ethical decisions, promote patient- and family-centered care, and prepare dentists and their dental teams for episodes of death and bereavement when providing a dental home to patients with life-threatening and complex chronic conditions.

  17. Preparing the Pediatric Dentist for Palliative and End-of-life Care.

    PubMed

    Sarvas, Elise W; Schwantes, Scott A; Karp, Jeffrey M

    2016-01-01

    Pediatric dentists are the primary providers of dental homes for children with life-threatening and complex chronic conditions. These children are increasingly living at home and seeking health care in community-based settings, including dental offices. Pediatric dentists may feel ill prepared to assume the roles and responsibilities of a pediatric palliative care provider due to limited education and training during dental school and residency; however, they should be sensitive to the palliative care needs of children and families. The purpose of this clinical article was to highlight palliative care scenarios in pediatric dentistry and provide actionable resources to empower pediatric dentists to gather health care information, make informed ethical decisions, promote patient- and family-centered care, and prepare dentists and their dental teams for episodes of death and bereavement when providing a dental home to patients with life-threatening and complex chronic conditions. PMID:27557917

  18. End-of-Life Decisions and Palliative Care in Advanced Heart Failure.

    PubMed

    Meyers, Deborah E; Goodlin, Sarah J

    2016-09-01

    Advanced heart failure (HF) therapies are focused on extending life and improving function. In contrast, palliative care is a holistic approach that focuses on symptom alleviation and patients' physical, psychosocial, and spiritual needs. HF clinicians can integrate palliative care strategies by incorporating several important components of planning and decision-making for HF patients. Future care planning (FCP) for HF patients should incorporate the basic tenets of shared decision-making (SDM). These include understanding the patient's perspective and care preferences, articulating what is medically feasible, and integrating these considerations into the overall care plan. Use of defined triggers for FCP can stimulate important patient-caregiver conversations. Guidelines advocate an annual review of HF status and future care preferences. Advance directives are important for any individual with a chronic, life-limiting illness and should be integrated into FCP. Nevertheless, use of advance directives by HF patients is extremely low. Consideration of illness trajectories and risk-scoring tools might facilitate prognostication and delivery of appropriate HF care. Decisions about heart transplantation or left ventricular assist device implantation should include planning for potential complications associated with these therapies. Such decisions also should include a discussion of palliative management, as an alternative to intervention and also as an option for managing symptoms or adverse events after intervention. Palliative care, including FCP and SDM, should be integrated into the course of all patients with advanced HF. Clinicians who provide HF care should acquire the skills necessary for conducting FCP and SDM discussions.

  19. Symptom Management and End-of-Life Care in Amyotrophic Lateral Sclerosis.

    PubMed

    Jackson, Carlayne E; McVey, April L; Rudnicki, Stacy; Dimachkie, Mazen M; Barohn, Richard J

    2015-11-01

    The number of available symptomatic treatments has markedly enhanced the care of patients with amyotrophic lateral sclerosis (ALS). Once thought to be untreatable, patients with ALS today clearly benefit from multidisciplinary care. The impact of such care on the disease course, including rate of progression and mortality, has surpassed the treatment effects commonly sought in clinical drug trials. Unfortunately, there are few randomized controlled trials of medications or interventions addressing symptom management. In this review, the authors provide the level of evidence, when available, for each intervention that is currently considered standard of care by consensus opinion.

  20. End-of-Life Decisions and Palliative Care in Advanced Heart Failure.

    PubMed

    Meyers, Deborah E; Goodlin, Sarah J

    2016-09-01

    Advanced heart failure (HF) therapies are focused on extending life and improving function. In contrast, palliative care is a holistic approach that focuses on symptom alleviation and patients' physical, psychosocial, and spiritual needs. HF clinicians can integrate palliative care strategies by incorporating several important components of planning and decision-making for HF patients. Future care planning (FCP) for HF patients should incorporate the basic tenets of shared decision-making (SDM). These include understanding the patient's perspective and care preferences, articulating what is medically feasible, and integrating these considerations into the overall care plan. Use of defined triggers for FCP can stimulate important patient-caregiver conversations. Guidelines advocate an annual review of HF status and future care preferences. Advance directives are important for any individual with a chronic, life-limiting illness and should be integrated into FCP. Nevertheless, use of advance directives by HF patients is extremely low. Consideration of illness trajectories and risk-scoring tools might facilitate prognostication and delivery of appropriate HF care. Decisions about heart transplantation or left ventricular assist device implantation should include planning for potential complications associated with these therapies. Such decisions also should include a discussion of palliative management, as an alternative to intervention and also as an option for managing symptoms or adverse events after intervention. Palliative care, including FCP and SDM, should be integrated into the course of all patients with advanced HF. Clinicians who provide HF care should acquire the skills necessary for conducting FCP and SDM discussions. PMID:27568873

  1. Researching a Best-Practice End-of-Life Care Model for Canada

    ERIC Educational Resources Information Center

    Wilson, Donna M.; Birch, Stephen; Sheps, Sam; Thomas, Roger; Justice, Christopher; MacLeod, Rod

    2008-01-01

    The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs.…

  2. The Myth Regarding the High Cost of End-of-Life Care

    PubMed Central

    Kelley, Amy S.

    2015-01-01

    Health care reform debate in the United States is largely focused on the highly concentrated health care costs among a small proportion of the population and policy proposals to identify and target this “high-cost” group. To better understand this population, we conducted an analysis for the Institute of Medicine Committee on Approaching Death using existing national data sets, peer-reviewed literature, and published reports. We estimated that in 2011, among those with the highest costs, only 11% were in their last year of life, and approximately 13% of the $1.6 trillion spent on personal health care costs in the United States was devoted to care of individuals in their last year of life. Public health interventions to reduce health care costs should target those with long-term chronic conditions and functional limitations. PMID:26469646

  3. Policies to improve end-of-life decisions in Flemish hospitals: communication, training of health care providers and use of quality assessments

    PubMed Central

    2009-01-01

    Background The prevalence and implementation of institutional end-of-life policies has been comprehensively studied in Flanders, Belgium, a country where euthanasia was legalised in 2002. Developing end-of-life policies in hospitals is a first step towards improving the quality of medical decision-making at the end-of-life. Implementation of policies through quality assessments, communication and the training and education of health care providers is equally important in improving actual end-of-life practice. The aim of the present study is to report on the existence and nature of end-of-life policy implementation activities in Flemish acute hospitals. Methods A cross-sectional mail survey was sent to all acute hospitals (67 main campuses) in Flanders (Belgium). The questionnaire asked about hospital characteristics, the prevalence of policies on five types of end-of-life decisions: euthanasia, palliative sedation, alleviation of symptoms with possible life-shortening effect, do-not-resuscitate decision, and withdrawing or withholding of treatment, the internal and external communication of these policies, training and education on aspects of end-of-life care, and quality assessments of end-of-life care on patient and family level. Results The response rate was 55%. Results show that in 2007 written policies on most types of end-of-life decisions were widespread in acute hospitals (euthanasia: 97%, do-not-resuscitate decisions: 98%, palliative sedation: 79%). While standard communication of these policies to health care providers was between 71% and 91%, it was much lower to patients and/or family (between 17% and 50%). More than 60% of institutions trained and educated their caregivers in different aspects on end-of-life care. Assessment of the quality of these different aspects at patient and family level occurred in 25% to 61% of these hospitals. Conclusions Most Flemish acute hospitals have developed a policy on end-of-life practices. However, communication

  4. CHOICES: promoting early access to end-of-life care through home-based transition management.

    PubMed

    Stuart, Brad; D'Onofrio, Carol N; Boatman, Susanne; Feigelman, Glen

    2003-08-01

    CHOICES is a comprehensive home-based care coordination program designed to bridge the gap between home health and hospice for Medicare + Choice enrollees with advanced chronic illness in San Francisco's East Bay region. Key elements of the program include physician education, enrollment of patients with high disease burden who may not be terminally ill, co-management of care with the primary physician, and an advanced practice clinical team that provides comprehensive in-home assessments, a flexible mix of life-prolonging and palliative care that evolves with disease progression, focused education and advance planning, and caregiver support. During a 42-month demonstration, 208 patients were enrolled in the program. Eighty percent had a non-cancer diagnosis; 40% were people of color. After an 8-month follow-up, 44% of the study cohort had died in the program or after transfer to hospice, 51% had been discharged, and 5% remained active. Median length of stay for decedents was 260 days. Preliminary evidence supports the program's feasibility and acceptability to patients, families, physicians, and agency partners. However, the uncertain future of Medicare + Choice and of managed care may jeopardize the program's sustainability. Policymakers and taxpayers will need to determine how to care for the growing number of chronically ill elderly who wish to remain at home as illness advances. The care needs of these patients and their families may overwhelm a health system organized around hospital treatment of acute illness.

  5. The Positive Association of End-of-Life Treatment Discussions and Care Satisfaction in the Nursing Home.

    PubMed

    Reinhardt, Joann P; Boerner, Kathrin; Downes, Deirdre

    2015-01-01

    With the progression of dementia, the need for families and health care providers to have discussions about end-of-life (EOL) treatments arises. EOL treatment decisions often involve whether or not medical interventions intended to prolong life-such as resuscitation, artificial nutrition and hydration, and use of antibiotics-are desired. It is unclear if family satisfaction with care in the nursing home may be associated with involvement in EOL treatment discussions. The frequency of discussions that family members reported having with health care team members regarding multiple life-sustaining treatments and symptom management for their relatives with advanced dementia were examined over a 6-month period along with the association of these particular discussions with care satisfaction over time. Results showed that greater frequency of discussion of EOL treatment wishes was positively associated with higher care satisfaction scores among family members of nursing home residents with dementia. When considered together, greater frequency of discussion of artificial hydration was uniquely associated with greater care satisfaction and increased care satisfaction over time. Social workers must ensure that EOL treatment discussions with older adults in the nursing home and their family members take place and that preferences are communicated among the various interdisciplinary health team members.

  6. How Death Anxiety Impacts Nurses’ Caring for Patients at the End of Life: A Review of Literature

    PubMed Central

    Peters, L; Cant, R; Payne, S; O’Connor, M; McDermott, F; Hood, K; Morphet, J; Shimoinaba, K

    2013-01-01

    Nurses are frequently exposed to dying patients and death in the course of their work. This experience makes individuals conscious of their own mortality, often giving rise to anxiety and unease. Nurses who have a strong anxiety about death may be less comfortable providing nursing care for patients at the end of their life. This paper explores the literature on death anxiety and nurses’ attitudes to determine whether fear of death impacts on nurses’ caring for dying patients. Fifteen quantitative studies published between 1990 and 2012 exploring nurses’ own attitudes towards death were critically reviewed. Three key themes identified were: i). nurses’ level of death anxiety; ii). death anxiety and attitudes towards caring for the dying, and iii). death education was necessary for such emotional work. Based on quantitative surveys using valid instruments, results suggested that the level of death anxiety of nurses working in hospitals in general, oncology, renal, hospice care or in community services was not high. Some studies showed an inverse association between nurses’ attitude towards death and their attitude towards caring for dying patients. Younger nurses consistently reported stronger fear of death and more negative attitudes towards end-of-life patient care. Nurses need to be aware of their own beliefs. Studies from several countries showed that a worksite death education program could reduce death anxiety. This offers potential for improving nurses’ caring for patients at the end of their life. PMID:23400515

  7. Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England

    PubMed Central

    Seymour, Jane E; Kumar, Arun; Froggatt, Katherine

    2011-01-01

    Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of ‘key’ external advocates and leverage of additional resources by adoption of care pathway tools. PMID:21282349

  8. The circle of life: end-of-life care and death rituals for Hmong-American elders.

    PubMed

    Gerdner, Linda A; Cha, Dia; Yang, Deu; Tripp-Reimer, Toni

    2007-05-01

    The Hmong are an ethnic minority from Southeast Asia who constitute a growing U.S. population. Gerontological nurses need to understand the cultural meaning and rituals associated with dying, death, and the bereavement process of Hmong Americans. Critical to this is the structure and role of clan and family as a source of support and their involvement in the decision-making process. In this article, we provide an overview of the traditional spiritual beliefs related to life and death with implications for end-of-life and postmortem care. Information was acquired through invited field experiences. Published literature and consultation with Hmong elders were used to clarify, enhance, and validate this understanding.

  9. Creating Discursive Order at the End of Life: The Role of Genres in Palliative Care Settings

    ERIC Educational Resources Information Center

    Schryer, Catherine; McDougall, Allan; Tait, Glendon R.; Lingard, Lorelei

    2012-01-01

    This article investigates an emerging practice in palliative care: dignity therapy. Dignity therapy is a psychotherapeutic intervention that its proponents assert has clinically significant positive impacts on dying patients. Dignity therapy consists of a physician asking a patient a set of questions about his or her life and returning to the…

  10. Midwifing the End of Life: Expanding the Scope of Modern Midwifery Practice to Reclaim Palliative Care.

    PubMed

    Van Hoover, Cheri; Holt, Lisa

    2016-05-01

    Historically, midwives held an important role in society as cradle-to-grave practitioners who eased individuals, families, and communities through difficult transitions across the life span. In the United States, during the first half of the 20th century, physicians assumed care for people during birth and death, moving these elements of the human experience from homes into the hospital setting. These changes in practice resulted in a dehumanization of birth and death experiences and led to detachment from what it means to be human among members of society. There is a current movement across the United States to incorporate palliative care and hospice care into both the home setting and the inpatient setting. Through their education and training, certified nurse-midwives/certified midwives (CNMs/CMs) are well equipped to serve as hospice and palliative care clinicians. Current midwives, skilled in assisting women and families through the transition of pregnancy to motherhood, can use their education and skills to help individuals and their families through the transition from life to death. The similarities between these states of the human experience (pregnancy to birth and terminal illness to death) allow for a fluidity between these experiences from the midwife perspective. The many parallels between these 2 elements of the human condition include stress, anxiety, and pain. Training in holistic approaches to symptom management and supporting individuals through difficult experiences (eg, birth) gives midwives a unique perspective that is readily translatable to assist individuals and families through the passage between life and death. PMID:27148997

  11. Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

    ERIC Educational Resources Information Center

    Pollens, Robin D.

    2012-01-01

    Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…

  12. [Psychiatric disorders in palliative care and at the end of life].

    PubMed

    Reich, Michel

    2015-04-01

    Patients confronted to advanced organic diseases at a palliative stage can present psychological distress that might announce the occurrence of genuine psychiatric disorders. Some frequent and comprehensible symptoms such as sadness, mild agitation, anxiety or more disturbing such as hallucinations, delusions or suicidal ideations must alert the clinician who should not minimize them by attributing them in a reactive way to the consequences of the evolution of physical disease or treatment's side effects. Literature data regarding psychiatric disorders (mainly anxiety disorders, delirium and depressive disorders) in palliative care are emerging and can guide clinicians in their role to detect them and providing early and efficient management. Occurrence of warning symptoms of psychiatric disorders can impaired quality of life and impact the prognosis of patients already weakened by the context of an advanced physical disease. The clinician will have to be careful to any psychiatric prodromic symptom and not hesitate to treat and to refer if necessary to a heath mental professional.

  13. [Psychiatric disorders in palliative care and at the end of life].

    PubMed

    Reich, Michel

    2015-04-01

    Patients confronted to advanced organic diseases at a palliative stage can present psychological distress that might announce the occurrence of genuine psychiatric disorders. Some frequent and comprehensible symptoms such as sadness, mild agitation, anxiety or more disturbing such as hallucinations, delusions or suicidal ideations must alert the clinician who should not minimize them by attributing them in a reactive way to the consequences of the evolution of physical disease or treatment's side effects. Literature data regarding psychiatric disorders (mainly anxiety disorders, delirium and depressive disorders) in palliative care are emerging and can guide clinicians in their role to detect them and providing early and efficient management. Occurrence of warning symptoms of psychiatric disorders can impaired quality of life and impact the prognosis of patients already weakened by the context of an advanced physical disease. The clinician will have to be careful to any psychiatric prodromic symptom and not hesitate to treat and to refer if necessary to a heath mental professional. PMID:25767042

  14. Caring for Pediatric Patients' Families at the Child's End of Life.

    PubMed

    Mullen, Jodi E; Reynolds, Melissa R; Larson, Jennifer S

    2015-12-01

    Nurses play an important role in supporting families who are faced with the critical illness and death of their child. Grieving families desire compassionate, sensitive care that respects their wishes and meets their needs. Families often wish to continue relationships and maintain lasting connections with hospital staff following their child's death. A structured bereavement program that supports families both at the end of their child's life and throughout their grief journey can meet this need. PMID:26628545

  15. End-of-life care around the world: achievements to date and challenges remaining.

    PubMed

    Clark, David

    From the moment her interest in terminal care was awakened, Cicely Saunders was alert to the international dimensions of the subject. Her first patient in the late 1940s was an emigré Polish Jew dying alone and in isolation in a busy London hospital. Her letters from the 1950s onwards show an unquenchable thirst for new knowledge and a span of contacts and communications that was global in its reach. By the early 1960s, she was making fact-finding visits to the United States and Europe. Even before it opened to patients, St Christopher's Hospice was a beacon of inspiration to like-minded colleagues from many countries, eager to see how the model of practice was being operationalized and--more important still--how it could be adapted and modified in other settings. In the later years of her life, Cicely Saunders remained in contact with colleagues all over the world. She wrote introductions to numerous textbooks and collections; recorded interviews that were broadcast at international conferences; harnessed her name and energies to major efforts to promote palliative care globally; and, to the very end, served as a source of inspiration to palliative care activists, policy makers, educators, and researchers. As this special issue of the journal demonstrates so eloquently, that legacy lives on.

  16. The Colorado State University Pet Hospice program: end-of-life care for pets and their families.

    PubMed

    Bishop, Gail A; Long, Christie C; Carlsten, Kelly S; Kennedy, Katie C; Shaw, Jane R

    2008-01-01

    While the concept of hospice care for humans has existed for decades and is an integral part of the dying process, providing hospice care for companion animals is a new and growing service. Veterinarians and pet-owners have recently recognized that there is a need and a demand to care for pets with terminal illnesses. The Colorado State University Pet Hospice program meets those needs through supporting pets, their owners, and veterinarians, and educating professional veterinary students in end-of-life care. Developed in 2003, Pet Hospice is a student-run program that trains veterinary students in animal hospice care, and matches them with the family and veterinarian of a terminally ill pet in the community. Since its inception, 101 veterinary student volunteers have been trained and provided support to 68 families. Continued expansion of the client base, enlargement of the network of veterinarians and volunteers, and positive program evaluations reflect the strong impact of Pet Hospice and its support from veterinary students, veterinarians, and the community. PMID:19228904

  17. The Colorado State University Pet Hospice program: end-of-life care for pets and their families.

    PubMed

    Bishop, Gail A; Long, Christie C; Carlsten, Kelly S; Kennedy, Katie C; Shaw, Jane R

    2008-01-01

    While the concept of hospice care for humans has existed for decades and is an integral part of the dying process, providing hospice care for companion animals is a new and growing service. Veterinarians and pet-owners have recently recognized that there is a need and a demand to care for pets with terminal illnesses. The Colorado State University Pet Hospice program meets those needs through supporting pets, their owners, and veterinarians, and educating professional veterinary students in end-of-life care. Developed in 2003, Pet Hospice is a student-run program that trains veterinary students in animal hospice care, and matches them with the family and veterinarian of a terminally ill pet in the community. Since its inception, 101 veterinary student volunteers have been trained and provided support to 68 families. Continued expansion of the client base, enlargement of the network of veterinarians and volunteers, and positive program evaluations reflect the strong impact of Pet Hospice and its support from veterinary students, veterinarians, and the community.

  18. End-of-Life Care Intensity among Adolescent and Young Adult Cancer Patients in Kaiser Permanente Southern California

    PubMed Central

    Mack, Jennifer W.; Chen, Lie H.; Cannavale, Kimberley; Sattayapiwat, Olivia; Cooper, Robert M.; Chao, Chun R.

    2015-01-01

    Importance Cancer is the leading disease-related cause of death among adolescents and young adults (AYAs), but little is known about the care that AYA patients with cancer receive at the end of life (EOL). Objective To evaluate the intensity of EOL care among AYA cancer patients. Design Cross-sectional study using cancer registry and electronic health record data. Setting Kaiser Permanente Southern California (KSPC), an integrated health care delivery system. Participants 663 AYA patients with either (1) stage I-III cancer and evidence of cancer recurrence or (2) stage IV cancer at diagnosis who received care in KPSC and died in the years 2001–2010. Patients were eligible if they were aged 15–39 at death. Main Outcome Measures Chemotherapy use in the last 14 days of life, intensive care unit (ICU) care in the last 30 days of life, more than one emergency room (ER) visit in the last 30 days of life, hospitalization in the last 30 days of life, and a composite measure of medically intensive EOL care comprising any of the aforementioned measures. Results 11% of patients (72/663) received chemotherapy within 14 days of death. In the last 30 days of life, 22% of patients (144/663) were admitted to the ICU; 22% (147/663) had >1 ER visit; and 62% (413/663) were hospitalized. Overall, 68% (449/663) of subjects received at least one medically intensive EOL care measure. Conclusions and Relevance Most AYA patients receive at least one form of medically intensive EOL care. These findings suggest the need to better understand EOL care preferences and decision-making in this young population. PMID:26181778

  19. After the Liverpool Care Pathway—development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study

    PubMed Central

    Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S

    2015-01-01

    Introduction End of life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of one of the main end of life care guidelines which offered some structure, the Liverpool Care Pathway. This guidance gap may be eased with the development of heuristics (rules of thumb) which offer a fast and frugal form of decision-making. Objective To develop a toolkit of heuristics (rules of thumb) for practitioners to use when caring for people with dementia at the end of life. Method and analysis A mixed-method study using a co-design approach to develop heuristics in three phases. In phase 1, we will conduct at least six focus groups with family carers, health and social care practitioners from both hospital and community care services, using the ‘think-aloud’ method to understand decision-making processes and to develop a set of heuristics. The focus group topic guide will be developed from the findings of a previous study of 46 interviews of family carers about quality end-of-life care for people with dementia and a review of the literature. A multidisciplinary development team of health and social care practitioners will synthesise the findings from the focus groups to devise and refine a toolkit of heuristics. Phase 2 will test the use of heuristics in practice in five sites: one general practice, one community nursing team, one hospital ward and two palliative care teams working in the community. Phase 3 will evaluate and further refine the toolkit of heuristics through group interviews, online questionnaires and semistructured interviews. Ethics and dissemination This study has received ethical approval from a local NHS research ethics committee (Rec ref: 15/LO/0156). The findings of this study will be presented in peer-reviewed publications and national and international conferences. PMID:26338688

  20. Opinion on the ethical aspects of health care of patients at the end of life.

    PubMed

    Serrão, D

    1999-01-01

    Demographic evolution and scientific progress in the treatment of fatal diseases have brought about a large number of disabled old persons and of greatly dependent persons. Nowadays, the dying process of people in such conditions is slower, though irreversible, and it has created a new form of medical care known as palliative medicine. Seven situations of this kind are discussed, with the corresponding ethical appraisal of the possible medical decisions in each case. The opinion on this matter by the Portuguese National Council of Ethics for the Life Sciences, based on the initial report, is then reproduced. It is against euthanasia strictu sensu being legalised and no longer a criminal offence, recommending however the development of all forms of palliative medicine.

  1. Ethical reflections on end-of-life signs and symptoms in the intensive care setting: a place for neuromuscular blockers?

    PubMed Central

    2014-01-01

    The death of a loved one is often an ordeal and a tragedy for those who witness it, as death is not merely the end of a life, but also the end of an existence, the loss of a unique individual who is special and irreplaceable. In some situations, end-of-life signs, such as agonal gasps, can be an almost unbearable “sight” because the physical manifestations are hard to watch and can lead to subjective interpretation and irrational fears. Ethical unease arises as the dying patient falls prey to death throes and to the manifestations of ebbing life and the physician can only stand by and watch. From this point on, medicine can put an end to suffering by the use of neuromuscular blockade, but in so doing life ceases at the same time. It is difficult, however, not to respond to the distress of loved ones and caregivers. The ethical problem then becomes the shift from the original ethical concern, i.e. the dying patient, to the patient’s loved ones. Is such a rupture due to a difference in nature or a difference in degree, given that the dying patient remains a person and not a thing as long as the body continues to lead its own life, expressed through movement and sound? Because there cannot be any simple and unequivocal answer to this question, the SRLF Ethics Commission is offering ethical reflections on end-of-life signs and symptoms in the intensive care setting, and on the use of neuromuscular blockade in this context, with presentations on the subject by two philosophers and members of the SRLF Ethics Commission, Ms Lise Haddad and Prof Dominique Folscheid. The SRLF Ethics Commission hopes to provide food for thought for everyone on this topic, which undoubtedly calls for further contributions, the aim being not to provide ready-made solutions or policy, but rather to allow everyone to ponder this question in all conscience. PMID:25045580

  2. Ethical reflections on end-of-life signs and symptoms in the intensive care setting: a place for neuromuscular blockers?

    PubMed

    Daubin, Cédric; Haddad, Lise; Folscheid, Dominique; Boyer, Alexandre; Chalumeau-Lemoine, Ludivine; Guisset, Olivier; Hubert, Philippe; Pillot, Jérôme; Robert, René; Dreyfuss, Didier

    2014-12-01

    The death of a loved one is often an ordeal and a tragedy for those who witness it, as death is not merely the end of a life, but also the end of an existence, the loss of a unique individual who is special and irreplaceable. In some situations, end-of-life signs, such as agonal gasps, can be an almost unbearable "sight" because the physical manifestations are hard to watch and can lead to subjective interpretation and irrational fears. Ethical unease arises as the dying patient falls prey to death throes and to the manifestations of ebbing life and the physician can only stand by and watch. From this point on, medicine can put an end to suffering by the use of neuromuscular blockade, but in so doing life ceases at the same time. It is difficult, however, not to respond to the distress of loved ones and caregivers. The ethical problem then becomes the shift from the original ethical concern, i.e. the dying patient, to the patient's loved ones. Is such a rupture due to a difference in nature or a difference in degree, given that the dying patient remains a person and not a thing as long as the body continues to lead its own life, expressed through movement and sound? Because there cannot be any simple and unequivocal answer to this question, the SRLF Ethics Commission is offering ethical reflections on end-of-life signs and symptoms in the intensive care setting, and on the use of neuromuscular blockade in this context, with presentations on the subject by two philosophers and members of the SRLF Ethics Commission, Ms Lise Haddad and Prof Dominique Folscheid. The SRLF Ethics Commission hopes to provide food for thought for everyone on this topic, which undoubtedly calls for further contributions, the aim being not to provide ready-made solutions or policy, but rather to allow everyone to ponder this question in all conscience. PMID:26187156

  3. Ethical reflections on end-of-life signs and symptoms in the intensive care setting: a place for neuromuscular blockers?

    PubMed

    Daubin, Cédric; Haddad, Lise; Folscheid, Dominique; Boyer, Alexandre; Chalumeau-Lemoine, Ludivine; Guisset, Olivier; Hubert, Philippe; Pillot, Jérôme; Robert, René; Dreyfuss, Didier

    2014-01-01

    The death of a loved one is often an ordeal and a tragedy for those who witness it, as death is not merely the end of a life, but also the end of an existence, the loss of a unique individual who is special and irreplaceable. In some situations, end-of-life signs, such as agonal gasps, can be an almost unbearable "sight" because the physical manifestations are hard to watch and can lead to subjective interpretation and irrational fears. Ethical unease arises as the dying patient falls prey to death throes and to the manifestations of ebbing life and the physician can only stand by and watch. From this point on, medicine can put an end to suffering by the use of neuromuscular blockade, but in so doing life ceases at the same time. It is difficult, however, not to respond to the distress of loved ones and caregivers. The ethical problem then becomes the shift from the original ethical concern, i.e. the dying patient, to the patient's loved ones. Is such a rupture due to a difference in nature or a difference in degree, given that the dying patient remains a person and not a thing as long as the body continues to lead its own life, expressed through movement and sound? Because there cannot be any simple and unequivocal answer to this question, the SRLF Ethics Commission is offering ethical reflections on end-of-life signs and symptoms in the intensive care setting, and on the use of neuromuscular blockade in this context, with presentations on the subject by two philosophers and members of the SRLF Ethics Commission, Ms Lise Haddad and Prof Dominique Folscheid. The SRLF Ethics Commission hopes to provide food for thought for everyone on this topic, which undoubtedly calls for further contributions, the aim being not to provide ready-made solutions or policy, but rather to allow everyone to ponder this question in all conscience. PMID:25045580

  4. Update on End-of-Life Care Training During Nephrology Fellowship: A Cross-sectional National Survey of Fellows

    PubMed Central

    Combs, Sara A.; Culp, Stacey; Matlock, Daniel D.; Kutner, Jean S.; Holley, Jean L.; Moss, Alvin H.

    2014-01-01

    Background Patients with end-stage renal disease have high mortality and symptom burden. Past studies demonstrated that nephrologists do not feel prepared to care for their patients at the end of life (EOL). We sought to characterize current palliative and EOL care education received during nephrology fellowship and compare this to data from 2003. Study Design Cross-sectional online survey of second year nephrology trainees. Responses were compared to a similar survey in 2003. Setting & Participants 104 US nephrology fellowship programs in 2013. Measurements Quality of training in and attitudes toward EOL care, and knowledge and preparedness to provide nephrology-specific EOL care. Results Of the 204 fellows included for analysis (response rate, 65%), significantly more thought it was moderately to very important to learn to provide care at EOL in 2013 compared to 2003 (95% vs. 54%; p<0.001). Nearly all (99%) fellows in both surveys believed physicians have a responsibility to help patients at EOL. Ranking of teaching quality during fellowship in all areas (mean, 4.1 ± 0.8 on a scale of 0-5 [0, poor; 5, excellent) and specific to EOL care (mean, 2.4 ± 1.1) was unchanged from 2003, but knowledge of the annual gross mortality rate for dialysis patients was nominally worse in 2013, as only 57% vs. 67% in 2003 answered correctly (p=0.05). To an open-ended question asking what would most improve fellows’ EOL care education, the most common response was a required palliative medicine rotation during fellowship. Limitations Assessments were based on fellows’ subjective perceptions. Conclusions Nephrology fellows increasingly believe they should learn to provide EOL care during fellowship. However, perceptions about the quality of this teaching have not improved during the past decade. Palliative care training should be integrated into nephrology fellowship curricula. PMID:25245300

  5. Providing end-of-life care in care homes for older people: a qualitative study of the views of care home staff and community nurses.

    PubMed

    Goddard, Cassie; Stewart, Frances; Thompson, Genevieve; Hall, Sue

    2013-02-01

    The study aimed to explore the views of care home staff (CHS) and community nurses (CNs) on providing end-of-life care (EOLC) in care homes. Participants were randomly selected and qualitative interviews conducted with 80 CHS and 10 CNs. Themes emerging from the data included the following: The meaning of EOLC; starting EOLC; dying in the care home; stress of providing EOLC; improving EOLC; and the role of the CN. CHS felt that planning for the end of life was important before residents reached the dying phase, which some found difficult to determine. Although CHS wished to avoid residents being transferred to hospital to die, they acknowledged that improvements in their skills and the resources available to them were needed to manage EOLC effectively. CNs were critical of the EOLC provided in some care homes, reporting tensions over their relationship with CHS. As the number of older people who die in care homes increases, there is a need to overcome these barriers to provide good EOLC. PMID:25473926

  6. Clinical review: The role of the intensivist and the rapid response team in nosocomial end-of-life care

    PubMed Central

    2013-01-01

    In-hospital end-of-life care outside the ICU is a new and increasing aspect of practice for intensive care physicians in countries where rapid response teams have been introduced. As more of these patients die from withdrawal or withholding of artificial life support, determining whether a patient is dying or not has become as important to intensivists as the management of organ support therapy itself. Intensivists have now moved to making such decisions in hospital wards outside the boundaries of their usual closely monitored environment. This strategic change may cause concern to some intensivists; however, as custodians of the highest technology area in the hospital, intensivists are by necessity involved in such processes. Now, more than ever before, intensive care clinicians must consider the usefulness of key concepts surrounding nosocomial death and dying and the importance and value of making a formal diagnosis of dying in the wards. In this article, we assess the conceptual background, reference points, challenges and implications of these emerging aspects of intensive care medicine. PMID:23672813

  7. Improving confidence and competence of healthcare professionals in end-of-life care: an evaluation of the ‘Transforming End of Life Care’ course at an acute hospital trust

    PubMed Central

    Robinson, Vicky; Klass, Lara; Khan, Shaheen; George, Rob; Shepherd, Kate; Burman, Rachel; Koffman, Jonathan

    2016-01-01

    Background UK policymakers, clinicians and public wish to see improvements in end-of-life care (EoLC). However, healthcare professionals’ skills and knowledge to deliver high-quality care are often lacking. Since May 2012, palliative care staff in an inner-city tertiary hospital have run a 2-day Transforming End of Life Care (TEoLC) course to improve EoLC confidence, and competence among hospital and community staff. Aim To evaluate course participants’ self-rated confidence, competence and knowledge of EoLC topics. Evaluation design A before-and-after design using self-completion questionnaires, precourse and postcourse. 14 self-assessment questions examined confidence, understanding and knowledge of EoLC topics. Mean change scores and paired t tests were calculated and free-text responses analysed thematically. Participants 236 staff members completed the course between May 2012 and April 2014. 42% worked in hospitals and 55% in the community; the most frequent staff roles were qualified nurses (49%), senior nurses (16%) and general practitioners (15%). Results All 14 self-assessment topics improved significantly (p<0.001); most improved was ‘understanding and implementing Fast Track discharge’. Qualitative data showed increased knowledge and confidence in EoLC, particularly in communication, commitment to team work and holistic care. Overall, 217 (92%) participants would recommend the course and 215 (98%) indicated it would influence their practice. Conclusions The TEoLC course improved participants’ self-rated confidence, competence and knowledge in EoLC. Findings have utility beyond the UK in light of the international policy recommendations to improve the palliative care skills of generalist healthcare providers. PMID:26597902

  8. End of Life Care

    MedlinePlus

    ... impossible. In such a situation, treatment that only prolongs life may be appropriately withheld. In fact, the ... residents is to relieve discomfort rather than to prolong life. If individuals or their surrogates turn down ...

  9. Perceived outcomes of music therapy with Body Tambura in end of life care – a qualitative pilot study

    PubMed Central

    2014-01-01

    Background In recent years, music therapy is increasingly used in palliative care. The aim of this pilot study was to record and describe the subjective experiences of patients and their relatives undergoing music therapy with a Body Tambura in a German hospice and to develop hypotheses for future studies. Methods In a qualitative interview pilot study, data collection and analyses were performed according to the methodological framework of grounded theory. We included German-speaking patients, or relatives of patients, receiving end of life care in an inpatient hospice setting. Results 11 persons consisting of 8 patients (age range 51–82 years, 4 male and 4 female) and 3 relatives were treated and interviewed. All patients suffered from cancer in an advanced stage. The most often described subjective experiences were a relaxing and calming effect, sensations that the body feels lighter, and the generation of relaxing images and visualizations. Family members enjoyed listening to the music and felt more connected with the sick family member. Conclusion Patient reported beneficial aspects. The small sample size could be seen as a limitation. Assessment instruments measuring relaxation, stress, quality of life and should be included in future quantitative studies. PMID:24708801

  10. Challenges to Providing End-of-Life Care to Low-Income Elders with Advanced Chronic Disease: Lessons Learned from a Model Program

    ERIC Educational Resources Information Center

    Kramer, Betty J.; Auer, Casey

    2005-01-01

    Purpose: This study explored the challenges in providing end-of-life care to low-income elders with multiple comorbid chronic conditions in a fully "integrated" managed care program, and it highlighted essential recommendations. Design and Methods: A case-study design was used that involved an extensive analysis of qualitative data from five focus…

  11. The Role of Health Care Provider Goals, Plans, and Physician Orders for Life-Sustaining Treatment (POLST) in Preparing for Conversations About End-of-Life Care.

    PubMed

    Russell, Jessica

    2016-09-01

    The Physician Orders for Life-Sustaining Treatment (POLST) is a planning tool representative of an emerging paradigm aimed at facilitating elicitation of patient end-of-life care preferences. This study assessed the impact of the POLST document on provider goals and plans for conversations about end-of-life care treatment options. A 2 (POLST: experimental, control) × 3 (topic of possible patient misunderstanding: cardiopulmonary resuscitation, medical intervention, artificially administered nutrition) experimental design was used to assess goals, plan complexity, and strategies for plan alterations by medical professionals. Findings suggested that the POLST had little impact on plan complexity or reaction time with initial plans. However, preliminary evidence suggested that the utility of the POLST surfaced with provider responses to patient misunderstanding, in which differences in conditions were identified. Significant differences in goals reported as most important in driving conversational engagement emerged. Implications for findings are discussed. PMID:27442346

  12. Effect of end-of-life care education on the attitudes of nurses in infants’ and children's wards

    PubMed Central

    Zargham-Boroujeni, Ali; Bagheri, Sayed Hamid Sayed; Kalantari, Mehrdad; Talakoob, Sadigheh; Samooai, Farangis

    2011-01-01

    BACKGROUND: Infants palliative care becomes an important aspect of nursing when providing welfare and promoting children's life quality are the objectives of care. The number of children with life threatening diseases has increased alongside the developments in technology and medical treatment in medicine. It is a pure fact that our attitudes are related to our behaviors and performances. This research was conducted with the aim of assessing the effect of intensive course of children's palliative care on the attitudes of children and infants’ nurses in Isfahan University of Medical Sciences. METHODS: This was a quasi-experimental, two-group and two-stage study in which 56 nurses working at Infants’ and children's wards who met inclusion criteria were divided into experiment and control groups. The participants of experiment group attended in the infants’ palliative care training course which lasted for 3 weeks. A reliable and already validated questionnaire of Infants and Children Wards Nurses’ Attitudes Regarding the Dying Children was used before and after training. RESULTS: There was no significant difference between the two groups regarding demographic characteristics, except for marital status which was found the study findings were not confounded by it. There was a significant difference between mean test and re-test scores in the experiment group and also between the mean scores of control and experiment groups after training. There was no significant difference between mean scores before and after training in the control group. CONCLUSIONS: End-of-life children care is one of the issues in modern medicine which has not gained a definite status in Iran. It is hoped that nurses would be the forerunners of this modern science in Iran. PMID:22039385

  13. Conceptualizing Surrogate Decision-Making at End of Life in the Intensive Care Unit using Cognitive Task Analysis

    PubMed Central

    Dionne-Odom, J. Nicholas; Willis, Danny G.; Bakitas, Marie; Crandall, Beth; Grace, Pamela J.

    2014-01-01

    Background Surrogate decision-makers (SDMs) face difficult decisions at end of life (EOL) for decisionally incapacitated intensive care unit (ICU) patients. Purpose Identify and describe the underlying psychological processes of surrogate decision-making for adults at EOL in the ICU. Method Qualitative case study design using a cognitive task analysis (CTA) interviewing approach. Participants were recruited from October 2012 to June 2013 from an academic tertiary medical center’s ICU located in the rural Northeastern United States. Nineteen SDMs for patients who had died in the ICU completed in-depth semi-structured CTA interviews. Discussion The conceptual framework formulated from data analysis reveals that three underlying, iterative, psychological dimensions: gist impressions, distressing emotions, and moral intuitions impact a SDM’s judgment about the acceptability of either the patient’s medical treatments or his or her condition. Conclusion The framework offers initial insights about the underlying psychological processes of surrogate decision-making and may facilitate enhanced decision support for SDMs. PMID:25982772

  14. Nationwide monitoring of end-of-life care via the Sentinel Network of General Practitioners in Belgium: the research protocol of the SENTI-MELC study

    PubMed Central

    Van den Block, Lieve; Van Casteren, Viviane; Deschepper, Reginald; Bossuyt, Nathalie; Drieskens, Katrien; Bauwens, Sabien; Bilsen, Johan; Deliens, Luc

    2007-01-01

    Background End-of-life care has become an issue of great clinical and public health concern. From analyses of official death certificates, we have societal knowledge on how many people die, at what age, where and from what causes. However, we know little about how people are dying. There is a lack of population-based and nationwide data that evaluate and monitor the circumstances of death and the care received in the final months of life. The present study was designed to describe the places of end-of-life care and care transitions, the caregivers involved in patient care and the actual treatments and care provided to dying patients in Belgium. The patient, residence and healthcare characteristics associated with these aspects of end-of-life care provision will also be studied. In this report, the protocol of the study is outlined. Methods/Design We designed a nationwide mortality follow-back study with data collection in 2005 and 2006, via the nationwide Belgian Sentinel Network of General Practitioners (GPs) i.e. an existing epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian population. All GPs were asked to report weekly, on a standardized registration form, every patient (>1 year) in their practice who had died, and to identify patients who had died "non-suddenly." The last three months of these patients' lives were surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality. Discussion In 2005 and 2006, respectively 1385 and 1305 deaths were identified of which 66% and 63% died non-suddenly. The first results are expected in 2007. Via this study, we will build a descriptive epidemiological database on end-of-life care provision in Belgium, which might serve as baseline measurement to monitor end-of-life care over time. The study will inform medical practice as well as healthcare authorities in setting up an end-of-life care policy. We publish the

  15. The role of narrative in discussing end-of-life care: eliciting values and goals from text, context, and subtext.

    PubMed

    Young, Amanda J; Rodriguez, Keri L

    2006-01-01

    This article reports a qualitative study of elderly veterans' perceptions of and preferences for end-of-life care. At a large urban Veterans Affairs (VA) hospital, we asked 30 veterans and 30 health care providers to define 4 terms in the VA form of the advance directive: life-sustaining treatment, terminal condition, state of permanent unconsciousness, and decision-making capacity. The veterans commonly used narratives to construct meaning, and analysis showed that the resulting texts had both a subtext (the values and goals driving the narrative) and a context (life experiences that filter and shape the current interpretation). We found that all 3 components--text, subtext, and context--are crucial to understanding the central theme of an individual's narrative and the decision-making processes associated with it. In this article we examine 1 lengthy narrative using Chafe's (1994) notion of intonation units. We then present a series of short narratives to demonstrate 3 subthemes that emerged from the data: quality of life versus quantity of life, benefit of treatment versus cost of treatment, and, most common, control versus lack of control. Our goal was to demonstrate the centrality and usefulness of storytelling in the patient-provider interaction when listeners are willing to consider the subtext and context of the story and its role in the decision-making process. As demonstrated in this study, deciphering people's stories gives us insight into their values, the mental constructs that drive their decision making, and the goals that they have for their own health care.

  16. Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe

    PubMed Central

    Daveson, Barbara A.; Alonso, Juan P.; Calanzani, Natalia; Ramsenthaler, Christina; Gysels, Marjolein; Antunes, Barbara; Moens, Katrien; Groeneveld, Esther I.; Albers, Gwenda; Finetti, Silvia; Pettenati, Francesca; Bausewein, Claudia; Higginson, Irene J.; Harding, Richard; Deliens, Luc; Toscani, Franco; Ferreira, Pedro L.; Ceulemans, Lucas; Gomes, Barbara

    2014-01-01

    Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery. PMID:23487548

  17. How should nations measure the quality of end-of-life care for older adults? Recommendations for an international minimum data set.

    PubMed

    Casarett, David J; Teno, Joan; Higginson, Irene

    2006-11-01

    Nations face numerous challenges in providing high-quality end-of-life care for their citizens, and an aging population that has a prolonged trajectory of decline and substantial needs for care magnifies these challenges. As nations begin to address these challenges, it will be essential to determine whether their responses are effective, but current national data collection efforts are sporadic, and data are often collected only for patients who receive care through certain funding programs or provider organizations or in selected sites of care. Therefore, governments do not know whether their citizens are receiving adequate care, whether current programs are improving care, or how their outcomes compare with those of other countries. This article describes the importance of developing national minimum data sets that can be used to assess the quality of end-of-life care that older adults receive and recommends key variables that these data sets should include.

  18. End of Life: An Overview

    ERIC Educational Resources Information Center

    Toner, Mary Ann; Shadden, Barbara B.

    2012-01-01

    Speech-language pathologists (SLPs) provide services to patients confronting the end of life (EOL) in a variety of settings. Instead of targeting improvement of health or sustaining life, EOL services focus primarily on quality of life. Although SLPs may not consider themselves core members of the health care team providing EOL services, the…

  19. Mixed Methods Research in the Development and Evaluation of Complex Interventions in Palliative and End-of-Life Care: Report on the MORECare Consensus Exercise

    PubMed Central

    Preston, Nancy; Evans, Catherine J.; Grande, Gunn; Short, Vicky; Benalia, Hamid; Higginson, Irene J.; Todd, on behalf of MORECare, Chris

    2013-01-01

    Abstract Background: Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods. Objective: The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care. Methods: A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise. Results: There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed. Conclusions: There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications. PMID:24195755

  20. Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life?

    PubMed Central

    Fraser, L K; van Laar, M; Miller, M; Aldridge, J; McKinney, P A; Parslow, R C; Feltbower, R G

    2013-01-01

    Background: Despite advances in the treatment of childhood cancer, some children continue to die from their disease. This study aimed to assess the impact of specialist paediatric palliative care services (SPPCSs) on the number of hospital admissions in children who subsequently died from cancer in Yorkshire, UK. Methods: An extract of patients aged 0–19 years from the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) diagnosed from 1990 to 2009 were linked to inpatient hospital episodes data and a SPPCS database. Deaths were included if they occurred before 31 August 2011. Differences in hospital admission patterns were assessed using negative binomial regression and presented as incidence rate ratios (IRRs). Results: Of 2508 children on the YSRCCYP, 657 (26%) had died by the censoring date. A total of 211 children had been referred to the local SPPCS, of whom 182 (86%) had subsequently died. Referral to SPPCS was associated with a significant reduction in the rate of planned hospital admissions (IRR=0.60, 95% CI 0.43–0.85). Central nervous system tumours showed significant decreases for all planned and emergency admissions compared with all other diagnostic groups. Conclusion: Referral to SPPCS significantly reduced the number of planned hospital admissions for children and young people with cancer before their death, which are often integral to paediatric oncology treatment regimens. Overall, our findings show that SPPCS have a role in reducing hospital admissions during end of life care of paediatric cancer patients with potential personal, social and economic benefits. PMID:23449361

  1. Barriers to Advance Care Planning at the End of Life: An Explanatory Systematic Review of Implementation Studies

    PubMed Central

    Lund, Susi; Richardson, Alison; May, Carl

    2015-01-01

    Context Advance Care Plans (ACPs) enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges. Objective To investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice. Design An explanatory systematic review of qualitative implementation studies. Data sources Empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched. Methods Direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes. Results 13 papers identified from 166 abstracts were included in the review. Key factors facilitating implementation were: specially prepared staff utilizing a structured approach to interactions around ACPs. Barriers to implementation were competing demands of other work, the emotional and interactional nature of patient-professional interactions around ACPs, problems in sharing decisions and preferences within and between healthcare organizations. Conclusions This review demonstrates that doing more of the things that facilitate delivery of ACPs will not reduce the effects of those things that undermine them. Structured tools are only likely to be partially effective and the creation of a specialist cadre of ACP facilitators is unlikely to be a sustainable solution. The findings underscore both the challenge and need to find ways to routinely incorporate ACPs in clinical settings where multiple and competing demands impact on practice. Interventions most likely to meet with success are those that make elements of Advance Care Planning workable within complex and time pressured clinical workflows. PMID:25679395

  2. End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

    ERIC Educational Resources Information Center

    Wiese, Michele; Stancliffe, Roger J.; Balandin, Susan; Howarth, Glennys; Dew, Angela

    2012-01-01

    Background: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. Materials and Methods: Focus groups and individual interviews were conducted, guided by grounded theory methodology. Results: The current status of…

  3. Harm reduction services as a point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs: a qualitative analysis

    PubMed Central

    2012-01-01

    Background Homeless and marginally housed persons who use alcohol and/or illicit drugs often have end-of-life care needs that go unmet due to barriers that they face to accessing end-of-life care services. Many homeless and marginally housed persons who use these substances must therefore rely upon alternate sources of end-of-life care and support. This article explores the role of harm reduction services in end-of-life care services delivery to homeless and marginally housed persons who use alcohol and/or illicit drugs. Methods A qualitative case study design was used to explore end-of-life care services delivery to homeless and marginally housed persons in six Canadian cities. A key objective was to explore the role of harm reduction services. 54 health and social services professionals participated in semi-structured qualitative interviews. All participants reported that they provided care and support to this population at end-of-life. Results Harm reduction services (e.g., syringe exchange programs, managed alcohol programs, etc.) were identified as a critical point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs. Where possible, harm reduction services facilitated referrals to end-of-life care services for this population. Harm reduction services also provided end-of-life care and support when members of this population were unable or unwilling to access end-of-life care services, thereby improving quality-of-life and increasing self-determination regarding place-of-death. Conclusions While partnerships between harm reduction programs and end-of-life care services are identified as one way to improve access, it is noted that more comprehensive harm reduction services might be needed in end-of-life care settings if they are to engage this underserved population. PMID:22545586

  4. End-of-life care in Germany: Study design, methods and first results of the EPACS study (Establishment of Hospice and Palliative Care Services in Germany)

    PubMed Central

    2010-01-01

    Background In order to tackle the deficits in the provision of palliative home care, profound structural changes in the outpatient sector were introduced by law in Germany in 2007. The EPACS study was carried out (Research Accompanying the Establishment of Hospice and Palliative Care Services in Rhineland-Palatinate, Germany) to document the quality of inpatient and outpatient end-of-life care in Rhineland-Palatinate, Germany, before the implementation of these changes. With this article we focus on the study design and methods of the EPACS-Study. We further report first results regarding several aspects of outpatient end-of-life care. Methods The cross-sectional survey was based on a random sample of 5000 inhabitants of Rhineland-Palatinate that had died from May 25 until August 24 of the year 2008. Relatives of these randomly drawn deceased persons were interviewed by means of a written survey. Results The overall response proportion considering only those questionnaires that actually were delivered (n = 3833) was 36.0%. Factors influencing participation were age, sex, and marital status. 355 (25.8%) deceased persons had used professional home care in the four weeks prior to their death, but only very few persons had used a specialised palliative home care service (n = 30; 8.5%). There was a clear gap between the need for specialised outpatient care and the actual utilisation of these services. Conclusions Satisfaction with professional home care was relatively high, but physicians were rated less favourable than nurses. There were deficits especially with respect to physicians' communicative and supportive skills. Further analyses are necessary to provide more detailed information about quality of care in different care settings and for distinct groups. Predictors of good care, as well as obstacles to it, must be further investigated. In the long run, a follow-up survey must be conducted to compare quality of home care before and after the structural changes in

  5. A social work practice reflection on issues arising for LGBTI older people interfacing with health and residential care: rights, decision making and end-of-life care.

    PubMed

    Duffy, Francis; Healy, John Paul

    2014-01-01

    This article is a social work practice reflection on issues arising for lesbian, gay, bisexual, transgender, and intersex (LGBTI) older people interfacing with health and residential care in Australia; focusing on clients, families, and carers in relation to rights, decision making, and end-of-life care. The article explores relevant case examples from social work practice in a health and residential care setting that highlight some specific complexities of working with this client group. This article brings greater attention to issues arising for older LBGTI when interfacing with health and residential care and has the potential to improve practice for social workers and other health professionals and improve outcomes for LGBTI older people.

  6. Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

    PubMed Central

    2010-01-01

    Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end-of-life care retrospectively from

  7. Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

    PubMed Central

    Jones, Louise; Candy, Bridget; Davis, Sarah; Elliott, Margaret; Gola, Anna; Harrington, Jane; Kupeli, Nuriye; Lord, Kathryn; Moore, Kirsten; Scott, Sharon; Vickerstaff, Victoria; Omar, Rumana Z; King, Michael; Leavey, Gerard; Nazareth, Irwin; Sampson, Elizabeth L

    2015-01-01

    Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia. PMID:26354388

  8. End of life issues in a palliative care framework for a critically ill adult African American with cystic fibrosis: a case study.

    PubMed

    McNeal, Gloria J

    2002-01-01

    The purpose of this investigation, using case study methodology, was to explore the end of life issues and to give meaning to the biopsychosocial experiences of the study participant, an adult African American female patient diagnosed with Cystic Fibrosis. Two theoretical frameworks were used to guide the investigation of the study: Kubler-Ross Model of the Stages of Dying and the Conceptual Framework for Palliative Care Practice. Data analysis included review of medical records and patient journals, interviews, observations and clinical assessment. The findings indicated that end of life issues can be articulated within the context of a palliative care framework and that the biopsychosocial experiences of the dying person acquire meaning when situated within life history, ethical values and metaphysical belief systems.

  9. "Must do CPR??": strategies to cope with the new College of Physicians and Surgeons of Ontario policy on end-of-life care.

    PubMed

    Hawryluck, Laura; Oczkowski, Simon J W; Handelman, Mark

    2016-08-01

    The College of Physicians and Surgeons of Ontario recently released a new policy, Planning for and Providing Quality End-of-Life Care. The revised policy is more accurate in its consideration of the legal framework in which physicians practice and more reflective of ethical issues that arise in end-of-life (EOL) care. It also recognizes valid instances for not offering cardiopulmonary resuscitation (CPR). Nevertheless, the policy poses a significant ethical and legal dilemma-i.e., if disputes over EOL care arise, then physicians must provide CPR even when resuscitation would fall outside this medical standard of care. While the policy applies in Ontario, it is likely to influence other physician colleges across Canada as they review their standards of practice. This paper explores the rationale for the mandated CPR, clarifies the policy's impact on the medical standard of care, and discusses strategies to improve EOL care within the policy. These strategies include understanding the help-hurt line, changing the language used when discussing cardiac arrest, clarifying care plans during the perioperative period, engaging the intensive care unit team early in goals-of-care discussions, mentoring hospital staff to improve skills in goals-of-care discussions, avoiding use of the "slow code", and continuing to advocate for quality EOL care and a more responsive legal adjudication process. PMID:27126679

  10. Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Scale: The Caregiver's Perception of Patient Care Near Death

    PubMed Central

    Higgins, Philip C.; Prigerson, Holly G.

    2013-01-01

    Purpose End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care. Patients and Methods Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52–0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = −2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = −.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = −2.06; p≤.05). Conclusion CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment. PMID:23762467

  11. Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at end of life.

    PubMed

    Melhado, Lolita; Bushy, Angeline

    2011-11-01

    African Americans over 65 represent 3.5 of the 35.6 million Americans. Morbidity and mortality rates are highest among this group; associated with lack of resources and awareness of health problems. But health needs are the same at end of life, yet care is less than optimal. African Americans are less likely to have advance directives nonetheless desire communication, information, respect, and a trusting doctor-patient relationship. Low health literacy may contribute to this disparity. This scholarly review examines the health literacy in advance care planning and refines concepts of uncertainty in illness theory deriving a model for advance care planning in African Americans.

  12. Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at end of life.

    PubMed

    Melhado, Lolita; Bushy, Angeline

    2011-11-01

    African Americans over 65 represent 3.5 of the 35.6 million Americans. Morbidity and mortality rates are highest among this group; associated with lack of resources and awareness of health problems. But health needs are the same at end of life, yet care is less than optimal. African Americans are less likely to have advance directives nonetheless desire communication, information, respect, and a trusting doctor-patient relationship. Low health literacy may contribute to this disparity. This scholarly review examines the health literacy in advance care planning and refines concepts of uncertainty in illness theory deriving a model for advance care planning in African Americans. PMID:21398263

  13. 'I don't want to talk about it.' Raising public awareness of end-of-life care planning in your locality.

    PubMed

    Hickey, Deb; Quinn, Sharon

    2012-05-01

    The UK Department of Health's (2008) End of Life Care Strategy highlighted the need for greater public awareness around planning and the choices available as people approach the end of their life. Despite efforts to 'normalise' death and dying and recognise that they are an inevitable part of life, a taboo persists and open communication about these issues is often limited or restricted to periods of crisis. Translating national policy into meaningful local dialogue requires creative interventions that are adaptable to each community. This article explores these key themes and reports on the responses of the first 304 people to complete an end-of-life survey as part of local engagement with the general public in South West Essex regarding issues around death and dying. PMID:22885861

  14. Pain medicine and palliative care as an alternative to euthanasia in end-of-life cancer care

    PubMed Central

    Erdek, Michael

    2015-01-01

    There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population. PMID:25999611

  15. Pain medicine and palliative care as an alternative to euthanasia in end-of-life cancer care.

    PubMed

    Erdek, Michael

    2015-05-01

    There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population. PMID:25999611

  16. Chemotherapy at end-of-life: an integration of oncology and palliative team.

    PubMed

    Chan, Wing-lok; Lam, Ka-on; Siu, Wai-kwan; Yuen, Kwok-keung

    2016-03-01

    Palliative chemotherapy is increasingly used in cancer patients near end of life. With the development of newer anticancer agents which have less side effects and higher expected efficacy, the decision on palliative chemotherapy in patients near end of life is complex. This article illustrates how oncologist and palliative care physicians can work together effectively. This article also gives an overview about the risks of palliative chemotherapy near end of life, patients' and physicians' perspectives in choosing the aggressive treatment and describes what an oncologist should do when facing this challenging situation.

  17. Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in Belgium

    PubMed Central

    Deschepper, Reginald; Bilsen, Johan; Bossuyt, Nathalie; Van Casteren, Viviane; Deliens, Luc

    2009-01-01

    Objective To explore the relation between the care provided in the final three months of life and the prevalence and types of end of life decisions in Belgium. Design Two year nationwide retrospective study, 2005-6 (SENTI-MELC study). Setting Data collection via the sentinel network of general practitioners, an epidemiological surveillance system representative of all general practitioners in Belgium. Subjects 1690 non-sudden deaths in practices of the sentinel general practitioners. Main outcome measures Non-sudden deaths of patients (aged >1 year) reported each week. Reported care provided in the final three months of life and the end of life decisions made. Multivariable regression analysis controlled for age, sex, cause, and place of death. Results Use of specialist multidisciplinary palliative care services was associated with intensified alleviation of symptoms (odds ratio 2.1, 95% confidence interval 1.6 to 2.6), continuous deep sedation forgoing food/fluid (2.9, 1.7 to 4.9), and the total of decisions explicitly intended to shorten life (1.5, 1.1 to 2.1) but not with euthanasia or physician assisted suicide in particular. To a large extent receiving spiritual care was associated with higher frequencies of euthanasia or physician assisted suicide than receiving little spiritual care (18.5, 2.0 to 172.7). Conclusions End of life decisions that shorten life, including euthanasia or physician assisted suicide, are not related to a lower use of palliative care in Belgium and often occur within the context of multidisciplinary care. PMID:19643825

  18. Communication Tools for End-of-Life Decision-Making in Ambulatory Care Settings: A Systematic Review and Meta-Analysis

    PubMed Central

    Chung, Han-Oh; Hanvey, Louise; Mbuagbaw, Lawrence; You, John J.

    2016-01-01

    Background Patients with serious illness, and their families, state that better communication and decision-making with healthcare providers is a high priority to improve the quality of end-of-life care. Numerous communication tools to assist patients, family members, and clinicians in end-of-life decision-making have been published, but their effectiveness remains unclear. Objectives To determine, amongst adults in ambulatory care settings, the effect of structured communication tools for end-of-life decision-making on completion of advance care planning. Methods We searched for relevant randomized controlled trials (RCTs) or non-randomized intervention studies in MEDLINE, EMBASE, CINAHL, ERIC, and the Cochrane Database of Randomized Controlled Trials from database inception until July 2014. Two reviewers independently screened articles for eligibility, extracted data, and assessed risk of bias. Grading of Recommendations Assessment, Development, and Evaluation (GRADE) was used to evaluate the quality of evidence for each of the primary and secondary outcomes. Results Sixty-seven studies, including 46 RCTs, were found. The majority evaluated communication tools in older patients (age >50) with no specific medical condition, but many specifically evaluated populations with cancer, lung, heart, neurologic, or renal disease. Most studies compared the use of communication tools against usual care, but several compared the tools to less-intensive advance care planning tools. The use of structured communication tools increased: the frequency of advance care planning discussions/discussions about advance directives (RR 2.31, 95% CI 1.25–4.26, p = 0.007, low quality evidence) and the completion of advance directives (ADs) (RR 1.92, 95% CI 1.43–2.59, p<0.001, low quality evidence); concordance between AD preferences and subsequent medical orders for use or non-use of life supporting treatment (RR 1.19, 95% CI 1.01–1.39, p = 0.028, very low quality evidence, 1

  19. Is Public Communication about End-of-Life Care Helping to Inform All?: Cancer News Coverage in African American vs. Mainstream Media

    PubMed Central

    Fishman, Jess M.; Ten Have, Thomas; Casarett, David

    2014-01-01

    Background Because cancers are a leading cause of death, these diseases receive a great deal of news attention. However, because news media frequently target specific racial or ethnic audiences, some populations may receive different information, and it is unknown whether reporting equally informs all about options for care at the end of life. This study of US news reporting compares “mainstream” (general market) media to African American media, which serves the largest minority group. The specific goal of this study was to determine whether these news media communicate differently about cure-directed cancer treatment and end-of-life alternatives. Methods This content analysis includes 660 cancer news stories from online and print media that target either African American or mainstream audiences. The main outcome measures include whether reporting discussed: adverse events of cancer treatment; cancer treatment failure; cancer death/dying; and end-of-life palliative or hospice care. Results Unadjusted and adjusted analyses indicate that the news stories in the African American media are less likely than those in mainstream media to discuss each of the topics studied. Comparing the proportions of news stories in mainstream vs. African American media , 31.6% vs. 13.6% discussed adverse events (OR 2.92; 95% CI 1.51-5.66; P=0.001); 14.1% vs. 4.2% mentioned treatment failure (OR, 3.79; 95% CI 1.45-9.88; P=0.006); and 11.9% vs. 3.8% focused on death/dying (OR, 3.42; 95% CI 1.39-8.38; P=.007). Lastly, although very few news stories discussed end-of-life hospice or palliative care, all were found in mainstream media (7/396 vs. 0/264). Conclusion The African American news media sampled are less likely than mainstream news media to portray negative cancer outcomes and end-of-life care. Given media's segmented audiences, these findings raise concerns that not all audiences are being informed equally well. Because media content is modifiable, there may be opportunities to

  20. Measuring patient treatment preferences in end-of-life care research: applications for advance care planning interventions and response shift research.

    PubMed

    Schwartz, Carolyn E; Merriman, Melanie P; Reed, George W; Hammes, Bernard J

    2004-04-01

    Understanding the dynamics of patient treatment preferences can be important for end-of life are research, and has particular salience not only to guide a process of advance care planning (ACP) but also as an outcome measure. Ascertaining the reliability and responsiveness of preferences for life-sustaining treatments within and between patients is a necessary foundation for utilizing patient-agent congruence as an outcome for ACP interventions. This study validated a modified version of the Emanuel and Emanuel Medical Directive for use in both research and clinical applications. Seriously ill patients (n = 168) were asked at baseline and 21 days to consider four common end-of-life health state scenarios, to indicate their goals for treatment, and to state their preferences for six specific treatments. We investigated the reliability and validity of this tool. We found that preferences for life-sustaining treatments were highly intercorrelated, and internally consistent across treatments by scenario and across scenarios by treatment. Preferences for pain medications were, however, distinct from preferences for other treatments. Preference scores exhibited stability over follow-up, and demonstrated both concurrent and discriminant validity. We detected a small effect size for change in preferences as a function of health state change, suggesting that re-prioritization response shifts do occur but are small in magnitude in these patient samples over this time frame. We conclude that this measure is reliable and valid for use in clinical settings and for evaluating interventions designed to improve patient-agent congruence about patient preferences for life-sustaining treatments. Clinical applications of the tool are discussed. PMID:15130201

  1. Video May Aid End-of-Life Decision-Making

    MedlinePlus

    ... page: https://medlineplus.gov/news/fullstory_159659.html Video May Aid End-of-Life Decision-Making Brief ... THURSDAY, June 30, 2016 (HealthDay News) -- Watching a video about end-of-life care options may help ...

  2. Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

    PubMed Central

    Fleming, Jane; Farquhar, Morag; Brayne, Carol; Barclay, Stephen

    2016-01-01

    Introduction Increasing longevity means more people will be dying in very old age, but little is known about the preferences of the ‘oldest old’ regarding their care at the end of life. Aims To understand very old people’s preferences regarding care towards the end of life and attitudes towards dying, to inform policy and practice. Methods Qualitative data collection for n = 42 population-based cohort study participants aged 95–101 (88% women, 42% in long-term-care): topic-guided interviews with n = 33 participants and n = 39 proxy informants, most with both (n = 30: 4 jointly + separate interviews for 26 dyads). Results Death was a part of life: these very old people mainly live day-to-day. Most were ready to die, reflecting their concerns regarding quality of life, being a nuisance, having nothing to live for and having lived long enough. Contrasting views were rare exceptions but voiced firmly. Most were not worried about death itself, but concerned more about the dying process and impacts on those left behind; a peaceful and pain-free death was a common ideal. Attitudes ranged from not wanting to think about death, through accepting its inevitable approach to longing for its release. Preferring to be made comfortable rather than have life-saving treatment if seriously ill, and wishing to avoid hospital, were commonly expressed views. There was little or no future planning, some consciously choosing not to. Uncertainty hampered end-of-life planning even when death was expected soon. Some stressed circumstances, such as severe dependency and others’ likely decision-making roles, would influence choices. Carers found these issues harder to raise but felt they would know their older relatives’ preferences, usually palliative care, although we found two discrepant views. Conclusions This study’s rare data show ≥95-year-olds are willing to discuss dying and end-of-life care but seldom do. Formal documentation of wishes is extremely rare and may not be

  3. Dying in a rural residential aged care facility: an action research and reflection project to improve end-of-life care to residents with a non-malignant disease.

    PubMed

    Rowley, Joanne; Taylor, Beverley

    2011-12-01

    This article describes a qualitative research project that explored issues around end-of-life care provided to residents dying from non-malignant diseases in two, rural Australian, residential aged care facilities. Reflective processes and action research were combined to work in collaboration with 14 aged nurses, associated staff and relatives of dying residents. Reflection featured in the research and included group reflection on practice stories, critical reflection during thematic analysis and reflection on action research cycles. Themes and subthemes emerged, indicating that aspects of end-of-life care needed further improvement. Major thematic concerns were prioritized for action and included the need for better pain management practices which will be discussed. Identifying these clinical issues was an important step in creating, implementing and evaluating actions. Participants reported varying degrees of success in attempting to improve end-of-life care.

  4. Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia

    PubMed Central

    Crowther, Jacqueline; Wilson, Kenneth CM; Horton, Siobhan; Lloyd-Williams, Mari

    2013-01-01

    Objectives A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care. Design Qualitative in-depth interviews with bereaved informal carers of people with dementia. Setting United Kingdom. Participants Forty bereaved carers – 31 women and nine men – with an age range of 18–86 years and from wide socioeconomic backgrounds participated. Main outcome measures Experiences of carers of care for person with dementia during last year of life. Results The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices. Conclusion The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settings – examples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care. PMID:24108538

  5. Identifying patients with advanced chronic conditions for a progressive palliative care approach: a cross-sectional study of prognostic indicators related to end-of-life trajectories

    PubMed Central

    Amblàs-Novellas, J; Murray, S A; Espaulella, J; Martinez-Muñoz, M; Blay, C; Gómez-Batiste, X

    2016-01-01

    Objectives 2 innovative concepts have lately been developed to radically improve the care of patients with advanced chronic conditions (PACC): early identification of palliative care (PC) needs and the 3 end-of-life trajectories in chronic illnesses (acute, intermittent and gradual dwindling). It is not clear (1) what indicators work best for this early identification and (2) if specific clinical indicators exist for each of these trajectories. The objectives of this study are to explore these 2 issues. Setting 3 primary care services, an acute care hospital, an intermediate care centre and 4 nursing homes in a mixed urban–rural district in Barcelona, Spain. Participants 782 patients (61.5% women) with a positive NECPAL CCOMS-ICO test, indicating they might benefit from a PC approach. Outcome measures The characteristics and distribution of the indicators of the NECPAL CCOMS-ICO tool are analysed with respect to the 3 trajectories and have been arranged by domain (functional, nutritional and cognitive status, emotional problems, geriatric syndromes, social vulnerability and others) and according to their static (severity) and dynamic (progression) properties. Results The common indicators associated with early end-of-life identification are functional (44.3%) and nutritional (30.7%) progression, emotional distress (21.9%) and geriatric syndromes (15.7% delirium, 11.2% falls). The rest of the indicators showed differences in the associations per illness trajectories (p<0.05). 48.2% of the total cohort was identified as advanced frailty patients with no advanced disease criteria. Conclusions Dynamic indicators are present in the 3 trajectories and are especially useful to identify PACC for a progressive PC approach purpose. Most of the other indicators are typically associated with a specific trajectory. These findings can help clinicians improve the identification of patients for a palliative approach. PMID:27645556

  6. Interactional communication challenges in end-of-life care: dialectical tensions and management strategies experienced by home hospice nurses.

    PubMed

    Gilstrap, Cristina M; White, Zachary M

    2015-01-01

    This study examines the dialectical tensions experienced by home hospice nurses in interactions with patients, families, and health care providers. In-depth, semistructured interviews were conducted with 24 home hospice nurses from a mid-size for-profit hospice organization serving approximately 230 patients on an annual basis. Interviews revealed hospice nurses experience both interpersonal and organizational dialectics during hospice interactions: authoritative-nonauthoritative, revelation-concealment, independence-collaboration, and quality of care-business of care. Dialectics often resulted as a by-product of (a) responding to expectations and care choices of patients and families particular to the emotionally charged home context, (b) obtaining authorization from health care providers who are not members of the interdisciplinary team, and (c) pressures associated with providing quality patient care while fulfilling organizational role requirements. The praxis strategies used to negotiate tensions included segmentation, balance, recalibration, and spiraling inversion. Specifically, nurses employed strategies such as ascertaining family/patient acceptance, using persuasive tactics when communicating with external health care providers, relying on effective time management, and working off the clock to provide more in-person care. Although functional for patients and hospice organizations, nurses who continually rely on these strategies may experience job stress when their interpersonal commitments repeatedly conflict with organizational role demands.

  7. 76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-16

    ... the data collection plans and instruments, contact Dr. Amanda Greene, Science Evaluation Officer... Palliative Care Science Needs Assessment: Funding Source Questionnaire (Survey of Authors) SUMMARY: In... opportunity for public comment on proposed data collection projects, the National Institute of...

  8. The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop

    PubMed Central

    Evans, Catherine J.; Benalia, Hamid; Preston, Nancy J.; Grande, Gunn; Gysels, Marjolein; Short, Vicky; Daveson, Barbara A.; Bausewein, Claudia; Todd, Chris; Higginson, Irene J.

    2013-01-01

    Context A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. Objectives To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points. Methods An international expert “workshop” was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments. Results There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline. Conclusion Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement. PMID:23628515

  9. Evaluation of measurement equivalence of the Family Satisfaction with the End-of-Life Care in an ethnically diverse cohort: Tests of differential item functioning

    PubMed Central

    Teresi, Jeanne A; Ocepek-Welikson, Katja; Ramirez, Mildred; Kleinman, Marjorie; Ornstein, Katherine; Siu, Albert

    2016-01-01

    Background The Family Satisfaction with End-of-Life Care is an internationally used measure of satisfaction with cancer care. However, the Family Satisfaction with End-of-Life Care has not been studied for equivalence of item endorsement across different socio-demographic groups using differential item functioning. Aims The aims of this secondary data analysis were (1) to examine potential differential item functioning in the family satisfaction item set with respect to type of caregiver, race, and patient age, gender, and education and (2) to provide parameters and documentation of differential item functioning for an item bank. Design A mixed qualitative and quantitative analysis was conducted. A priori hypotheses regarding potential group differences in item response were established. Item response theory and Wald tests were used for the analyses of differential item functioning, accompanied by magnitude and impact measures. Results Very little significant differential item functioning was observed for patient's age and gender. For race, 13 items showed differential item functioning after multiple comparison adjustment, 10 with non-uniform differential item functioning. No items evidenced differential item functioning of high magnitude, and the impact was negligible. For education, 5 items evidenced uniform differential item functioning after adjustment, none of high magnitude. Differential item functioning impact was trivial. One item evidenced differential item functioning for the caregiver relationship variable. Conclusion Differential item functioning was observed primarily for race and education. No differential item functioning of high magnitude was observed for any item, and the overall impact of differential item functioning was negligible. One item, satisfaction with “the patient's pain relief,” might be singled out for further study, given that this item was both hypothesized and observed to show differential item functioning for race and education

  10. Family Caregivers Who Would Be Unwilling to Provide Care at the End of Life Again: Findings from the Health Survey for England Population Survey

    PubMed Central

    Johnson, Miriam J.; Allgar, Victoria; Macleod, Una; Jones, Annie; Oliver, Steven; Currow, David

    2016-01-01

    Background Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances. Methods Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted. Findings HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data. Conclusions A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome. PMID:26809029

  11. Canada's Compassionate Care Benefit: Is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

    PubMed Central

    2011-01-01

    Background An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. Methods As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Results Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. Conclusions This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to

  12. [End of life in France].

    PubMed

    Vacheron, André

    2013-01-01

    Two major changes in end-of-life management have occured in recent decades: first, because of the increase in life expectancy and the resulting aging of the population, most deaths now involve old or very old people; second, more than two-thirds of deaths occur in a hospital or an institution. Our fellow citizens are afraid of suffering and death. They wish for a peaceful death, as rapid as possible and, in recent surveys, say they favour euthanasia. Yet euthanasia is illegal in France and in most other Western countries (with the exception of the Benelux nations). Palliative care ensures dignity in death, without anxiety of suffering, and is expanding rapidly in France. Léonetti's law of 22 April 2005 ensures the protection of the weakest, who should never be considered unworthy of life, yet is poorly known to the public and even to physicians. It now needs to be applied in practice. PMID:25518160

  13. [Physician-assisted suicide and advance care planning--ethical considerations on the autonomy of dementia patients at their end of life].

    PubMed

    Gather, Jakov; Vollmann, Jochen

    2014-10-01

    Physician-assisted suicide (PAS), which is currently the subject of intense and controversial discussion in medical ethics, is barely discussed in psychiatry, albeit there are already dementia patients in Germany and other European countries who end their own lives with the assistance of physicians. Based on the finding that patients who ask for medical assistance in suicide often have in mind the loss of their mental capacity, we submit PAS to an ethical analysis and put it into a broader context of patient autonomy at the end of life. In doing so, we point to advance care planning, through which the patient autonomy of the person concerned can be supported as well as respected in later stages of the disease. If patients adhere to their autonomous wish for PAS, physicians find themselves in an ethical dilemma. A further tabooing of the topic, however, does not provide a solution; rather, an open societal and professional ethical discussion and regulation are essential. PMID:25068685

  14. [Physician-assisted suicide and advance care planning--ethical considerations on the autonomy of dementia patients at their end of life].

    PubMed

    Gather, Jakov; Vollmann, Jochen

    2014-10-01

    Physician-assisted suicide (PAS), which is currently the subject of intense and controversial discussion in medical ethics, is barely discussed in psychiatry, albeit there are already dementia patients in Germany and other European countries who end their own lives with the assistance of physicians. Based on the finding that patients who ask for medical assistance in suicide often have in mind the loss of their mental capacity, we submit PAS to an ethical analysis and put it into a broader context of patient autonomy at the end of life. In doing so, we point to advance care planning, through which the patient autonomy of the person concerned can be supported as well as respected in later stages of the disease. If patients adhere to their autonomous wish for PAS, physicians find themselves in an ethical dilemma. A further tabooing of the topic, however, does not provide a solution; rather, an open societal and professional ethical discussion and regulation are essential.

  15. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important

    PubMed Central

    Virdun, Claudia; Luckett, Tim; Davidson, Patricia M; Phillips, Jane

    2015-01-01

    Background: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. Aim and design: This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. Data sources: Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. Results: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. Conclusion: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals. PMID:25921707

  16. They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes

    PubMed Central

    Bollig, Georg; Gjengedal, Eva; Rosland, Jan Henrik

    2015-01-01

    Background: Residents living in long-term care facilities are a vulnerable population. For many residents, a nursing home is their place of death. Palliative care and end-of-life decisions are important components of their care provision. Aim: To study the views of cognitively able residents and relatives on advance care planning, end-of-life care, and decision-making in nursing homes. Design: A qualitative study with in-depth interviews with nursing home residents and focus group interviews with relatives of nursing home residents. Analysis is based on interpretive description. Setting/participants: In total, 43 informants from nine nursing homes participated in the study (25 nursing home residents and 18 relatives). All included residents had capacity to provide informed consent and lived in long-term care. Results: The main findings of this study were the differing views about decision-making and advance care planning of residents and relatives. Residents do trust relatives and staff to make important decisions for them. The relatives are in contrast insecure about the residents’ wishes and experience decision-making as a burden. The majority of the residents had not participated in advance care planning. None of the residents stated challenges connected to end-of-life care or mentioned the wish for euthanasia. Conclusion: Although most residents seem to be satisfied with decision-making and end-of life care, there is a need for systematic advance care planning. Advance care planning could help to explore future wishes for care and ease decision-making for the relatives, physicians, and staff and should be offered to all cognitively able nursing homes residents. PMID:26396227

  17. Rituals at End-of-Life.

    PubMed

    Pace, James C; Mobley, Tyree S

    2016-09-01

    Understanding the significance of rituals at the end-of-life enables health care professionals to offer meaningful and compassionate interventions that enhance quality of life and support those dying and those who grieve. Rituals contribute to the strength, capacity, and health of providers who cope with death events. Rituals help the living create continuing bonds with those dying, help with coping skills, and allow healthy growth through opportunities for naming, honoring, and memorializing. The display of respect and a nonjudgmental attitude create a space for support, trust, sharing of emotion, empowerment, and quality of care during end-of-life events. PMID:27497020

  18. Futility and the common cold. How requests for antibiotics can illuminate care at the end of life.

    PubMed

    Prendergast, T J

    1995-03-01

    The dominant approach to futility in medicine assumes that the probability and utility of medical interventions may be separated to provide a quantitative (probabilistic) definition of futility. This assumption is not only misleading but also responsible for much of the confusion that futility has engendered in medical discussions. The divorce of utility from probability is the opposite of how clinicians reason: an improbable intervention looks different if it is cheap, easy, and without morbidity than if it is technology intensive, expensive, and likely to involve great pain and suffering. Futility is how physicians describe the sense of being compelled to proceed with resource intensive care for marginal benefits. Outside the intensive care unit, physicians weigh and sometimes reject patient requests without the need to invoke futility. By examining the ways that physicians can legitimately evaluate patient requests, we can show that appeals to futility are both unnecessary and counterproductive. In cases where such appeals are unavoidable, the outpatient model suggests a process to adjudicate the competing claims of patient autonomy and physician responsibility. PMID:7874961

  19. Sequential occurrence of dyspnea at the end of life in palliative care, according to the underlying cancer

    PubMed Central

    Guirimand, Frédéric; Sahut d'izarn, Marine; Laporte, Lucy; Francillard, Marie; Richard, Jean-François; Aegerter, Philippe

    2015-01-01

    Dyspnea is a symptom that severely affects the quality of life of terminally ill patients. Its frequency differs considerably between studies. We aimed to characterize the frequency of dyspnea in a palliative care hospital (PCH) and to identify factors predisposing to dyspnea, particularly during the very last days of life, as a function of the underlying disease. Episodes of dyspnea were identified by the computerized extraction of prospectively collected data from the reports of care assistants or from medical observations recorded in the medical files for all stays at our PCH during the last 6 years. There were 6455 hospital stays, 88% ending in the death of the patient; 13,282 episodes of dyspnea were recorded during 2608 hospital stays (40%). Dyspnea was more frequently observed in cases of cancer than in other conditions (RR = 1.30; 95% CI: 1.14–1.48). Pulmonary metastasis increased the risk of dyspnea from 37% to 51% (RR = 1.37; 95% CI: 1.29–1.46). Dyspnea frequency varied with the primary cancer site, from 24% (brain cancer) to 60% (esophageal cancer). The data for cancer patients staying for more than 6 days who subsequently died indicated that 8% of patients experienced dyspnea exclusively during the last 4 days of the life, independently of the site of the primary cancer. Dyspnea during the last few days of life requires systematic assessment. Exclusively terminal dyspnea should be distinguished from more precocious dyspnea, as the pathophysiological mechanisms and treatments of these two forms are probably different. PMID:25644607

  20. Using a public health approach to improve end-of-life care: results and discussion of a health needs assessment undertaken in a large city in northern England.

    PubMed

    Ingold, Kathryn; Hicks, Fiona

    2015-06-01

    A detailed health needs assessment (HNA) for end-of-life care (EoLC) services was led by public health in Leeds to inform a commissioning strategy. To answer the question: are we delivering the best possible EoLC services within the resources available? Mixed methods were used with three approaches: epidemiological, corporate and comparative. More people from deprived communities die in hospital. 18% of people who die each year are on a palliative care register, reflecting a lack of recognition and planning for EoLC given that 75% of people who die need EoLC. Over 100 staff, patients and carers were interviewed and over 200 staff returned questionnaires. Staff highlighted concerns about capacity of services; pressure on out-of-hospital care; problems at physical and electronic interfaces between services; suboptimal hospital discharge; need for earlier recognition of the EoL stage for patients. Patients and carers stressed the importance of communication, coordination and continuity of care; full involvement in care planning; honesty and support for the bereaved; an advocate for patients and families; accessible information; improved urgent care; integrated team working; pain relief, dignity and respect. Issues from comparator sites included the need for sustainable leadership for change, lack of interoperability between IT systems; building advance care planning into working culture; gaps in psychological services, bereavement and pastoral support; integration within all clinical areas; lack of district nurses; few investment opportunities; getting home care support right; concerns about 111; incentives for general practitioners to deliver EoLC; variability in service and the Liverpool Care Pathway controversy. Ethical approval was not sought as the HNA was undertaken as a service evaluation. Local policy is that ethical approval is not required for service evaluation. PMID:25193016

  1. A conceptual model of family surrogate end-of-life decision-making process in the nursing home setting: goals of care as guiding stars.

    PubMed

    Bern-Klug, Mercedes

    2014-01-01

    An increasing proportion of dying is occurring in America's nursing homes (NH). Family members are involved in (and affected by) medical decision-making on behalf of NH residents approaching the end of life, especially when the resident is cognitively impaired. This article proposes an empirically derived conceptual model of the key factors NH family surrogate decision-makers consider when establishing or changing goals of care and the iterative process as applied to the NH setting. This model also establishes the importance of family social role expectations toward their loved one as well as the concept, "stance toward dying," as key in establishing or changing the main goal of care. NH staff and physicians can use the model as a framework for providing information and support to family members. Research is needed to better understand how to prepare staff and settings to support family surrogate decision-makers, in particular around setting goals of care. The model can be generalized beyond nursing homes.

  2. PalliPA: How can general practices support caregivers of patients at their end of life in a home-care setting? A study protocol

    PubMed Central

    2012-01-01

    best practice to successfully support family caregivers of patients at the end of life. PMID:22583663

  3. Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care

    PubMed Central

    Calanzani, Natalia; Higginson, Irene J; Koffman, Jonathan; Gomes, Barbara

    2016-01-01

    Background Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey. Methods Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4–10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants. Findings The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52–8.00, ref: 20–49yrs) and female informants (AOR 1.70, 95%CI: 1.33–2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46–0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32–0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920). Conclusions Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase

  4. A Legal and Ethical Analysis of the Effects of Triggering Conditions on Surrogate Decision-Making in End-of-Life Care in the US.

    PubMed

    Clint Parker, J; Goldberg, Daniel S

    2016-03-01

    The central claim of this paper is that American states' use of so-called "triggering conditions" to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts do not satisfy the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations (including epistemic difficulties), and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. PMID:26084270

  5. End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care.

    PubMed

    Ullrich, Christina K; Dussel, Veronica; Hilden, Joanne M; Sheaffer, Jan W; Lehmann, Leslie; Wolfe, Joanne

    2010-05-13

    The end-of-life (EOL) experience of children who undergo stem cell transplantation (SCT) may differ from that of other children with cancer. To evaluate perspectives and patterns of EOL care after SCT, we surveyed 141 parents of children who died of cancer (response rate, 64%) and their physicians. Chart review provided additional information. Children for whom SCT was the last cancer therapy (n = 31) were compared with those for whom it was not (n = 110). SCT parents and physicians recognized no realistic chance for cure later than non-SCT peers (both P < .001) and were more likely to have a primary goal of cure at death (parents, P < .001; physicians, P = .02). SCT children were more likely to suffer highly from their last cancer therapy and die in the intensive care unit (both P < .001), with less opportunity for EOL preparation. SCT parents who recognized no realistic chance for cure more than 7 days before death along with the physician were more likely to prepare for EOL, and if their primary goal was to reduce suffering, to achieve this (P < .001). SCT is associated with significant suffering and less opportunity to prepare for EOL. Children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals, and opportunities to maximize quality of life.

  6. Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach

    PubMed Central

    Amador, Sarah; Mathie, Elspeth; Nicholson, Caroline

    2016-01-01

    In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their

  7. Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach.

    PubMed

    Amador, Sarah; Goodman, Claire; Mathie, Elspeth; Nicholson, Caroline

    2016-01-01

    In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their

  8. Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach.

    PubMed

    Amador, Sarah; Goodman, Claire; Mathie, Elspeth; Nicholson, Caroline

    2016-06-03

    In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved. We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process. Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their

  9. Constructing Understandings of End-of-Life Care in Europe: A Qualitative Study Involving Cognitive Interviewing with Implications for Cross-National Surveys

    PubMed Central

    Bechinger-English, Dorothee; Bausewein, Claudia; Simon, Steffan T.; Harding, Richard; Higginson, Irene J.; Gomes, Barbara

    2011-01-01

    Abstract Background Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown. Purpose To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey. Methods An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC. Results Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios. Conclusion Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe. PMID:21306232

  10. Administering anticipatory medications in end-of-life care: A qualitative study of nursing practice in the community and in nursing homes

    PubMed Central

    Morbey, Hazel; Brown, Jayne; Payne, Sheila; Seale, Clive; Seymour, Jane

    2015-01-01

    Background: In the United Kingdom, an approach to improving end-of-life care has been the introduction of ‘just in case’ or ‘anticipatory’ medications. Nurses are often responsible for deciding when to use anticipatory medications, but little is known about their experiences. Aim: To examine nurses’ decisions, aims and concerns when using anticipatory medications. Design: An ethnographic study in two UK regions, using observations and interviews with nurses working in community and nursing home teams (n = 8). Findings: Observations (n = 83) and interviews (n = 61) with community nurses. Nurses identified four ‘conditions’ that needed to be established before they implemented anticipatory medications: (1) irreversibility; (2) inability to take oral medication; (3) where the patient was able, they should consent and (4) decision had to be independent of demands or requests from patient’s relatives. By using anticipation medications, nurses sought to enable patients to be ‘comfortable and settled’ by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call-out, while adhering to local prescribing policies. Worries included distinguishing between pain and agitation, balancing risks of under- and over-medication and the possibility of hastening death. Conclusion: Nurses take a leading role in the administration of anticipatory medications. Nurses apply consideration and caution to the administration of anticipatory medications but some experience emotional burden. Education, training and experience played a role in the nurses’ confidence and should continue to be central to efforts to improving the quality of palliative care in the community and nursing homes. PMID:25070861

  11. Making decisions at the end of life when caring for a person with dementia: a literature review to explore the potential use of heuristics in difficult decision-making

    PubMed Central

    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

  12. Performance of the Family Satisfaction with the End-of-Life Care (FAMCARE) measure in an ethnically diverse cohort: Psychometric analyses using item response theory

    PubMed Central

    Teresi, Jeanne A.; Ornstein, Katherine; Ocepek-Welikson, Katja; Ramirez, Mildred; Siu, Albert

    2013-01-01

    The Family Satisfaction with End-of-Life Care (FAMCARE) has been used widely among caregivers to individuals with cancer. The aim of this study was to evaluate the psychometric properties of this measure using item response theory (IRT). Methods The analytic sample was comprised of caregivers to 1983 patients with advanced cancer. Among the patients, 56% were female, with mean age 59.9 (s.d. = 11.8); 20% were non-Hispanic Black. The majority were family members either living with (44%) or not living with (35%) the patient. Factor analyses and IRT were used to examine the dimensionality, information and reliability of the FAMCARE. Results Although a bi-factor model fit the data slightly better than did a unidimensional model, the loadings on the group factors were very low. Thus, a unidimensional model appears to provide adequate representation for the item set. The reliability estimates, calculated along the satisfaction (theta) continuum were adequate (>0.80) for all levels of theta for which subjects had scores. Examination of the category response functions from IRT showed overlap in the lower categories with little unique information provided; moreover the categories were not observed to be interval. Based on these analyses, a three response category format was recommended: very satisfied, satisfied and not satisfied. Most information was provided in the range indicative of either dissatisfaction or high satisfaction. Conclusions These analyses support the use of fewer response categories, and provide item parameters that form a basis for developing shorter-form scales. Such a revision has the potential to reduce respondent burden. PMID:24091717

  13. A Comparison of Web-based and Small-Group Palliative and End-of-Life Care Curricula: A Quasi-Randomized Controlled Study at One Institution

    PubMed Central

    Day, Frank C.; Srinivasan, Malathi; Der-Martirosian, Claudia; Griffin, Erin; Hoffman, Jerome R.; Wilkes, Michael S.

    2014-01-01

    Purpose Few studies have compared the effect of web-based eLearning versus small-group learning on medical student outcomes. Palliative and end-of-life (PEOL) education is ideal for this comparison, given uneven access to PEOL experts and content nationally. Method In 2010, the authors enrolled all third-year medical students at the University of California, Davis School of Medicine into a quasi-randomized controlled trial of web-based interactive education (eDoctoring) compared to small-group education (Doctoring) on PEOL clinical content over two months. All students participated in three 3-hour PEOL sessions with similar content. Outcomes included a 24-item PEOL-specific self-efficacy scale with three domains (diagnosis/treatment [Cronbach’s alpha = 0.92, CI: 0.91–0.93], communication/prognosis [alpha = 0.95; CI: 0.93–0.96], and social impact/self-care [alpha = 0.91; CI: 0.88–0.92]); eight knowledge items; ten curricular advantage/disadvantages, and curricular satisfaction (both students and faculty). Results Students were randomly assigned to web-based eDoctoring (n = 48) or small-group Doctoring (n = 71) curricula. Self-efficacy and knowledge improved equivalently between groups: e.g., prognosis self-efficacy, 19%; knowledge, 10–42%. Student and faculty ratings of the web-based eDoctoring curriculum and the small group Doctoring curriculum were equivalent for most goals, and overall satisfaction was equivalent for each, with a trend towards decreased eDoctoring student satisfaction. Conclusions Findings showed equivalent gains in self-efficacy and knowledge between students participating in a web-based PEOL curriculum, in comparison to students learning similar content in a small-group format. Web-based curricula can standardize content presentation when local teaching expertise is limited, but may lead to decreased user satisfaction. PMID:25539518

  14. [End of life and vulnerability, a public health issue].

    PubMed

    Boucomont, Aude

    2016-02-01

    End of life and precarity, two words which were linked by the French national observatory for end of life care in its work carried out in 2014. The study provided an overview of current support practices in different areas, highlighting certain lessons to be learned and making recommendations to the different partners involved. PMID:26861080

  15. [Volunteer support at home, at the end of life].

    PubMed

    de Baudus, Sabine

    2015-11-01

    Volunteers work alongside nurses providing social support to people at the end of life at home. As partners in the patient management, they can contribute to finding innovative solutions and are important players in the "shared caring".

  16. Intercultural differences and communication at the end of life.

    PubMed

    Hallenbeck, J L

    2001-06-01

    Cross-cultural encounters at the end of life are common and can result in misunderstandings and conflicts. The primary care physician is ideally suited to facilitate communication that can promote understanding and conflict resolution. PMID:11406443

  17. Weaving interdisciplinary and discipline-specific content into palliative care education: one successful model for teaching end-of-life care.

    PubMed

    Supiano, Katherine P

    2013-01-01

    While palliative care is best delivered in an interdisciplinary format, courses teaching the interdisciplinary approach to palliative care are rare in healthcare education. This article describes a graduate-level course in palliative care for students in nursing, pharmacy, social work, and gerontology taught by faculty from each discipline. The overarching goals of this course are to convey core palliative care knowledge across disciplines, articulate the essential contribution of each discipline in collaborative care, and to define interdisciplinary processes learners need to understand and navigate interdisciplinary palliative care. Learning outcomes included increased knowledge in palliative care, enhanced attitudes in practice and application of skills to clinical practice settings, increased ability to contribute discipline-specific knowledge to their teams' discussions, and a sense of increasing confidence in participating in the care of complex patients, communicating with families, and contributing to the team as a member of their own discipline. PMID:23977797

  18. Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers

    PubMed Central

    Walczak, Adam; Butow, Phyllis N; Clayton, Josephine M; Tattersall, Martin H N; Davidson, Patricia M; Young, Jane; Epstein, Ronald M

    2014-01-01

    Introduction Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients’ and caregivers’ efforts to communicate about these issues with their healthcare team. Methods and analysis This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL—an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients’ and caregivers’ participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators. Ethics and dissemination Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations. Trial registration number Australian New Zealand Clinical

  19. End-of-life management in pediatric cancer.

    PubMed

    Epelman, Claudia L

    2012-04-01

    Pediatric palliative care at the end-of-life is focused on ensuring the best possible quality of life for patients with life-threatening illness and their families. To achieve this goal, important needs include: engaging with patients and families; improving communication and relationships; relieving pain and other symptoms, whether physical, psychosocial, or spiritual; establishing continuity and consistency of care across different settings; considering patients and families in the decision-making process about services and treatment choices to the fullest possible and desired degree; being sensitive to culturally diverse beliefs and values about death and dying; and responding to suffering, bereavement, and providing staff support. Any effort to improve quality of palliative and end-of-life care in pediatric oncology must be accompanied by an educational strategy to enhance the level of competence among health care professionals with regard to palliative care and end-of-life management skills as well as understanding of individualized care planning and coordination processes.

  20. Valuing QALYs at the end of life.

    PubMed

    Pinto-Prades, Jose-Luis; Sánchez-Martínez, Fernando-Ignacio; Corbacho, Belen; Baker, Rachel

    2014-07-01

    The possibility of weighting QALYs differently for different groups of patients has been a source of debate. Most recently, this debate has been extended to the relative value of QALYs at the end of life (EoL). The objective of this study is to provide evidence of societal preferences in relation to this topic. Three cross-sectional surveys were conducted amongst Spanish general population (n = 813). Survey 1 compared increases in life expectancy for EoL patients with health gains from temporary health problems. Survey 2 compared health gains for temporary health problems with quality of life gains at the EoL (palliative care). Survey 3 compared increases in life expectancy with quality of life gains, both for EoL patients. Preferences were elicited using Person Trade-Off (PTO) and Willingness to pay (WTP) techniques presenting two different durations of health benefit (6 and 18 months). Health benefits, measured in QALYs, were held constant in all comparisons. In survey 1 mean WTP was higher for life extending treatments than for temporary health problems and the majority of respondents prioritised life extension over temporary health problems in response to the PTO questions. In survey 2 mean WTP was higher for palliative care than for temporary health problems and 83% prioritized palliative care (for both durations) in the PTO questions. In survey 3 WTP values were higher for palliative care than for life extending treatments and more than 60% prioritized palliative care in the PTO questions. Our results suggest that QALYs gained from EoL treatments have a higher social value than QALYs gained from treatments for temporary health problems. Further, we found that people attach greater weight to improvements in quality of life than to life extension at the end of life. PMID:24820408

  1. Uncharted terrain: preference construction at the end of life.

    PubMed

    White, Mary T

    2014-01-01

    Respect for patients' self-determination has long been considered central to efforts to improve end-of-life care, yet efforts to promote advance directives or engage patients in end-of-life discussions are often unsuccessful. In this article, I contend that this is because the shared decision-making approach typically used in healthcare assumes patients' capacity to make rational choices, which is not always possible in end-of-life decisions. Drawing on decision theory, behavioral psychology, and related studies of end-of-life care, I present a growing body of evidence that suggests the novelty, complexity, and uncertainty of end-of-life circumstances make rational and stable preferences difficult to establish. I argue that an effective decision-making approach for the terminally ill must recognize and respond to the unique characteristics of end-of-life choices, including their nonrational dimensions. I conclude with a description of an initiative that appears to do so, resulting in increased patients' satisfaction.

  2. Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

    PubMed Central

    Denvir, Martin A; Highet, Gill; Robertson, Shirley; Cudmore, Sarah; Reid, Janet; Ness, Andrea; Hogg, Karen; Weir, Christopher; Murray, Scott; Boyd, Kirsty

    2014-01-01

    Objective To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals. Design Qualitative interview and focus group study. Setting Community and hospital-based focus groups and interviews. Participants Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11). Results PC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial. Conclusions PC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease. PMID:25023130

  3. What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life?: results from a realist evaluation of new palliative care services in two English counties

    PubMed Central

    2014-01-01

    Background We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes. Methods Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached. Results Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths. Conclusions With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system. PMID:25075202

  4. Do models of care designed for terminally ill 'home alone' people improve their end-of-life experience? A patient perspective.

    PubMed

    Aoun, Samar; O'Connor, Moira; Skett, Kim; Deas, Kathleen; Smith, Joanna

    2012-11-01

    Palliative care patients who live alone report greater psychological distress, and are less likely to die at home than those living with a family carer. However, there is a lack of research on the value of models of care that specifically address this disadvantage. This article describes the experiences of terminally ill 'home alone' people using one of two models of care aimed at maintaining participants' need for independent living, focusing on the effect of these two models of care on their physical, social and emotional needs. Twenty six palliative care patients of Silver Chain Hospice Care, in Western Australia, were randomly assigned to either having a personal alarm or additional care-aide hours in their home. An in-depth qualitative study was conducted in two phases in 2010 using face-to-face interviews. The care-aide model of care resulted in benefits such as easing the burden of everyday living; supporting well-being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer. By providing a safer, more secure environment through the use of a personal alarm or additional care-aide hours, patients were able to continue their activities of daily living, could build a sense of 'normality' into their lives, and they could live independently through support and dignity.

  5. Personality, neuroticism, and coping towards the end of life.

    PubMed

    Chochinov, Harvey Max; Kristjanson, Linda J; Hack, Thomas F; Hassard, Thomas; McClement, Susan; Harlos, Mike

    2006-10-01

    The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.

  6. The influence of culture on home-based family caregiving at end-of-life: a case study of Dutch reformed family care givers in Ontario, Canada.

    PubMed

    Donovan, Rhonda; Williams, Allison; Stajduhar, Kelli; Brazil, Kevin; Marshall, Denise

    2011-02-01

    Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers' (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and culturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.

  7. Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK

    PubMed Central

    Noble, B; King, N; Woolmore, A; Hughes, P; Winslow, M; Melvin, J; Brooks, J; Bravington, A; Ingleton, C; Bath, PA

    2015-01-01

    The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere. PMID:24735122

  8. Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.

    PubMed

    Noble, B; King, N; Woolmore, A; Hughes, P; Winslow, M; Melvin, J; Brooks, J; Bravington, A; Ingleton, C; Bath, P A

    2015-03-01

    The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere. PMID:24735122

  9. Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.

    PubMed

    Noble, B; King, N; Woolmore, A; Hughes, P; Winslow, M; Melvin, J; Brooks, J; Bravington, A; Ingleton, C; Bath, P A

    2015-03-01

    The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere.

  10. Institution of the health care agent in Polish legislation: position of the Polish Working Group on End-of-Life Ethics.

    PubMed

    Szeroczyńska, Małgorzata; Czarkowski, Marek; Krajnik, Małgorzata; Krajewski, Romuald; Pawłowski, Leszek; Adamczyk, Anna; Barczak-Oplustil, Agnieszka; Aszyk, Piotr; Kobyliński, Andrzej; Pasierski, Tomasz; Sobański, Piotr; Bołoz On Behalf Of The Polish Working Group On End-Of-Life Ethics, Wojciech

    2016-05-01

    INTRODUCTION In numerous countries legislation has been put in place allowing citizens to appoint persons authorized to make medical decisions on their behalf, should the principal lose such decision‑making capacity. OBJECTIVES The paper aimed to prepare a draft proposal of legal regulations introducing into Polish legislation the institution of the health care agent. PATIENTS AND METHODS The draft proposal has been grounded in 6 expertise workshops, in conjunction with several online debates. RESULTS The right to appoint a health care agent should apply to all persons of full legal capacity, and to minors over 16 years of age. Every non-legally incapacitated adult person would be eligible to be appointed a health care agent. Appointment of substitute agents should also be legally provided for. The prerogatives of health care agents would come into effect upon the principals' loss of their decisionmaking capacity, or upon the principals' waiving their right to be provided with pertinent information on their health status. The health care agents would make decisions in all matters pertaining to medical treatment, while remaining under no obligation to perform any hands-on caring duties for their principals. The term of medical power-of-attorney should be discretionary, while its revocation or resignation should be possible at any time. In the event of health care agents' inactivity, or in the event that their actions should appear contrary to the principals' best interests, an attending physician should notify a pertinent court of law whose prerogatives would facilitate revocation of a medical power-of-attorney.  CONCLUSIONS Statutory appointment of a health care agent allows every citizen to appoint in this capacity a person who, to the best of his or her knowledge, would best represent his or her interests in the event that the principal should ultimately lose the capacity to make medical decisions on his or her own behalf. PMID:27149104

  11. Institution of the health care agent in Polish legislation: position of the Polish Working Group on End-of-Life Ethics.

    PubMed

    Szeroczyńska, Małgorzata; Czarkowski, Marek; Krajnik, Małgorzata; Krajewski, Romuald; Pawłowski, Leszek; Adamczyk, Anna; Barczak-Oplustil, Agnieszka; Aszyk, Piotr; Kobyliński, Andrzej; Pasierski, Tomasz; Sobański, Piotr; Bołoz On Behalf Of The Polish Working Group On End-Of-Life Ethics, Wojciech

    2016-05-01

    INTRODUCTION In numerous countries legislation has been put in place allowing citizens to appoint persons authorized to make medical decisions on their behalf, should the principal lose such decision‑making capacity. OBJECTIVES The paper aimed to prepare a draft proposal of legal regulations introducing into Polish legislation the institution of the health care agent. PATIENTS AND METHODS The draft proposal has been grounded in 6 expertise workshops, in conjunction with several online debates. RESULTS The right to appoint a health care agent should apply to all persons of full legal capacity, and to minors over 16 years of age. Every non-legally incapacitated adult person would be eligible to be appointed a health care agent. Appointment of substitute agents should also be legally provided for. The prerogatives of health care agents would come into effect upon the principals' loss of their decisionmaking capacity, or upon the principals' waiving their right to be provided with pertinent information on their health status. The health care agents would make decisions in all matters pertaining to medical treatment, while remaining under no obligation to perform any hands-on caring duties for their principals. The term of medical power-of-attorney should be discretionary, while its revocation or resignation should be possible at any time. In the event of health care agents' inactivity, or in the event that their actions should appear contrary to the principals' best interests, an attending physician should notify a pertinent court of law whose prerogatives would facilitate revocation of a medical power-of-attorney.  CONCLUSIONS Statutory appointment of a health care agent allows every citizen to appoint in this capacity a person who, to the best of his or her knowledge, would best represent his or her interests in the event that the principal should ultimately lose the capacity to make medical decisions on his or her own behalf.

  12. The Impact of Personal Loss on the Experience of Health Professions: Graduate Students in End-of-Life and Bereavement Care

    ERIC Educational Resources Information Center

    Supiano, Katherine P.; Vaughn-Cole, Beth

    2011-01-01

    This study explored the impact of prior personal experience with grief on self-reported personal and professional development of graduate students in nursing, social work, counseling, pastoral care, and genetic counseling involved as cofacilitators in bereavement support groups, and of medical students observing interdisciplinary inpatient…

  13. End-of-life issues.

    PubMed

    Gordon, A S

    2001-02-01

    In the Western world we have not fully accepted the fact that dying is indeed part of the process of living. Even today in the 21st century, physicians who have historically been taught to diagnose and treat disease with the expectation of cure, still regard death as a failure. We need to be reminded of the 15th-century definition of medical care, "To cure sometimes, to relieve often, to comfort always." We must realise that we cannot defy death and that every individual on earth has no choice but to travel the journey, be it long or short, from birth to ultimate death.

  14. Making a difference in end-of-life decisions.

    PubMed

    Danko, Helen

    2004-01-01

    In summary, this process is painful for family and caregivers, particularly after an extended relationship as the one experienced above. It requires a strong commitment on the part of the health care team who embrace a dignified end-of-life process and the decisions that must be made. The health care team that cared so well for S.R. in life was able to assist and be part of his dignified closure. PMID:15453241

  15. “It is not the fading candle that one expects”: general practitioners’ perspectives on life-preserving versus “letting go” decision-making in end-of-life home care

    PubMed Central

    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

  16. End-of-life care in advanced kidney disease: ethical and legal issues and key challenges for black and minority ethnic groups.

    PubMed

    Cronin, Antonia J

    2014-09-01

    Advances in modern medical technology have gone so far that it is now possible for machinery to keep people alive. To some extent this has led to a misperception in society that death can almost always be postponed because life-sustaining extracorporeal machinery of some sort or another, for example a dialysis machine, can prevent it. However, for some, being kept alive connected to a dialysis machine for four hours three times a week does not represent or even come close to an existence or quality of life they consider valuable. It may even cause unnecessary distress. This may be because they have reached a point at the end of their lives where they would like the focus of their treatment or care to become that which enables them to live as well as possible until they die. In these circumstances treatment and care should properly be that which enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. Identifying and acknowledging the importance of such a paradigm shift in the delivery of healthcare, and above all facilitating it, includes taking on the responsibility, incumbent upon us all, to address the ethical issues that are brought into focus. In this paper, I examine some of these issues. I consider the ways in which underlying theoretical ethical principles have informed the development of professional guidance and highlight the dynamic relationship this guidance has with the law. Finally, I demonstrate the ways in which it can be usefully applied to inform and assist clinical decision-making. Key challenges for BAME groups are addressed.

  17. Do Older Korean Immigrants Engage in End-of-Life Communication?

    ERIC Educational Resources Information Center

    Ko, Eunjeong; Roh, Soonhee; Higgins, Doreen

    2013-01-01

    End-of-life communication is an important process as it allows individuals' treatment preferences to be known, yet not every culture is receptive to such discussions. Planning for end-of-life care is not readily supported in Asian culture, and little is known about individuals' communication with family and health care professionals…

  18. The Impact of an End-of-Life Communication Skills Intervention on Physicians-in-Training

    ERIC Educational Resources Information Center

    Pekmezaris, Renee; Walia, Rajni; Nouryan, Christian; Katinas, Lori; Zeitoun, Nancy; Alano, Gloria; Guzik, Howard J.; Lester, Paula E.; Sunday, Suzanne; Wolf-Klein, Gisele; Steinberg, Harry

    2011-01-01

    The palliative medicine literature consistently documents that physicians are poorly prepared to help patients experience a "good death" and are often unaware of their ill patients' preferences for end-of-life care. The present study, enrolling 150 physicians, sought to improve their communication skills for end-of-life care. We found significant…

  19. Servicing multi-cultural needs at the end of life.

    PubMed

    Koffman, Jonathan

    2014-09-01

    Ethnic and cultural diversity are widespread across the world, but there is growing concern that end-of-life care is not offering Black Asian and Minority Ethnic (BAME) groups the most appropriate services. This article explores the experiences of BAME patients with advanced disease and the response of the healthcare professionals who care for them. Key questions include cultural influences on symptoms of advanced disease, communication and the role of religion and spirituality.

  20. [Implantable cardioverter-defibrillator at the end of life].

    PubMed

    Pfeiffer, D; Hagendorff, A; Kühne, C; Reinhardt, S; Klein, N

    2015-06-01

    Brady- and tachyarrhythmias at the end of life are common observations. Implantable cardioverter-defibrillators answer with antibrady and antitachycardia pacing, which will not be associated with any complaints of the dying patient. In contrast, defibrillation and cardioversion shocks are extremely painful. Therefore shocks should be inactivated at the end of life. Family doctors, internists, emergency physicians and paramedics are unable to inactivate shocks. Deactivation of shocks at the end of life is not comparable to euthanasia or assisted suicide, but allow the patient to die at the end of an uncurable endstage disease. Deactivation of shocks should be discussed with the patient before initial implantation of the devices. The precise moment of the inactivation at the end of life should be discussed with patients and relatives. There is no common recommendation for the time schedule of this decision; therefore it should be based on the individual situation of the patient. Emergency health care physicians need magnets and sufficient information to inactivate defibrillators. The wishes of the patient have priority in the decision process and should be written in the patient's advance directive, which must be available in the final situation. However the physician must not necessarily follow every wish of the patient. As long as the laws in the European Union are not uniform, German recommendations are needed. PMID:26001358

  1. Cardiovascular implanted electronic devices in people towards the end of life, during cardiopulmonary resuscitation and after death: guidance from the Resuscitation Council (UK), British Cardiovascular Society and National Council for Palliative Care.

    PubMed

    Pitcher, David; Soar, Jasmeet; Hogg, Karen; Linker, Nicholas; Chapman, Simon; Beattie, James M; Jones, Sue; George, Robert; McComb, Janet; Glancy, James; Patterson, Gordon; Turner, Sheila; Hampshire, Susan; Lockey, Andrew; Baker, Tracey; Mitchell, Sarah

    2016-06-01

    The Resuscitation Council (UK), the British Cardiovascular Society (including the British Heart Rhythm Society and the British Society for Heart Failure) and the National Council for Palliative Care recognise the importance of providing clear and consistent guidance on management of cardiovascular implanted electronic devices (CIEDs) towards the end of life, during cardiorespiratory arrest and after death. This document has been developed to provide guidance for the full range of healthcare professionals who may encounter people with CIEDs in the situations described and for healthcare managers and commissioners. The authors recognise that some patients and people close to patients may also wish to refer to this document. It is intended as an initial step to help to ensure that people who have CIEDs, or are considering implantation of one, receive explanation of and understand the practical implications and decisions that this entails; to promote a good standard of care and service provision for people in the UK with CIEDs in the circumstances described; to offer relevant ethical and legal guidance on this topic; to offer guidance on the delivery of services in relation to deactivation of CIEDs where appropriate; to offer guidance on whether any special measures are needed when a person with a CIED receives cardiopulmonary resuscitation; and to offer guidance on the actions needed when a person with a CIED dies.

  2. Cardiovascular implanted electronic devices in people towards the end of life, during cardiopulmonary resuscitation and after death: guidance from the Resuscitation Council (UK), British Cardiovascular Society and National Council for Palliative Care.

    PubMed

    Pitcher, David; Soar, Jasmeet; Hogg, Karen; Linker, Nicholas; Chapman, Simon; Beattie, James M; Jones, Sue; George, Robert; McComb, Janet; Glancy, James; Patterson, Gordon; Turner, Sheila; Hampshire, Susan; Lockey, Andrew; Baker, Tracey; Mitchell, Sarah

    2016-06-01

    The Resuscitation Council (UK), the British Cardiovascular Society (including the British Heart Rhythm Society and the British Society for Heart Failure) and the National Council for Palliative Care recognise the importance of providing clear and consistent guidance on management of cardiovascular implanted electronic devices (CIEDs) towards the end of life, during cardiorespiratory arrest and after death. This document has been developed to provide guidance for the full range of healthcare professionals who may encounter people with CIEDs in the situations described and for healthcare managers and commissioners. The authors recognise that some patients and people close to patients may also wish to refer to this document. It is intended as an initial step to help to ensure that people who have CIEDs, or are considering implantation of one, receive explanation of and understand the practical implications and decisions that this entails; to promote a good standard of care and service provision for people in the UK with CIEDs in the circumstances described; to offer relevant ethical and legal guidance on this topic; to offer guidance on the delivery of services in relation to deactivation of CIEDs where appropriate; to offer guidance on whether any special measures are needed when a person with a CIED receives cardiopulmonary resuscitation; and to offer guidance on the actions needed when a person with a CIED dies. PMID:27277710

  3. A relational ethical approach to end-of-life delirium.

    PubMed

    Wright, David Kenneth; Brajtman, Susan; Macdonald, Mary Ellen

    2014-08-01

    Delirium is a condition of acute onset and fluctuating course in which a person's level of consciousness and cognition become disturbed. Delirium is a common and distressing phenomenon in end-of-life care, yet it is underrecognized and undertreated. In this article, we review qualitative descriptions of the delirium experience in end-of-life care, found through a systematic search of academic databases, to generate insight into the intersubjective nature of the delirium experience. Our analysis of retrieved studies advances an understanding of the relational ethical dimensions of this phenomenon, that is, how delirium is lived by patients, families, and health care providers and how it affects the relationships and values at stake. We propose three themes that explain the distressing nature of delirium in palliative care: 1) experiences of relational tension; 2) challenges in recognizing the delirious person; and 3) struggles to interpret the meaning of delirious behaviors. By approaching end-of-life delirium from a perspective of relational ethics, attention is focused on the implications for the therapeutic relationship with patients and families when delirium becomes part of the dying trajectory.

  4. Ensuring pain relief for children at the end of life

    PubMed Central

    Grégoire, Marie-Claude; Frager, Gerri

    2006-01-01

    Pain management in the context of pediatric palliative care can be challenging. The present article reviews, through a case-based presentation, the nonpharmacological and pharmacological methods used to ensure adequate pain control in children facing end of life. Details on the impressive range of opioid dosages required and routes of administration are highlighted from published literature and clinical experience. Where available, evidence-based recommendations are provided. Potential side effects of pain medication and barriers to good pain control are discussed. Novel analgesics and innovative delivery methods are presented as future tools enhancing pain relief at the end of life. Some challenges to ethically grounded research in this important context of care are reviewed. PMID:16960633

  5. Infusing End-of-Life Issues into the Rehabilitation Counselor Education Curriculum

    ERIC Educational Resources Information Center

    Wadsworth, John; Harley, Debra; Smith, S. Mae; Kampfe, Charlene

    2008-01-01

    Rehabilitation counselors are assisting consumers with end-of-life issues. Counselors who have the capacity to assist with end-of-life issues in a culturally sensitive manner possess pre-established self-care networks, an understanding of death from multiple perspectives, knowledge of communication interventions, and appropriate outcome…

  6. Ethical obligations and clinical goals in end-of-life care: deriving a quality-of-life construct based on the Islamic concept of accountability before God (taklīf).

    PubMed

    Padela, Aasim; Mohiuddin, Afshan

    2015-01-01

    End-of-life medical decision making presents a major challenge to patients and physicians alike. In order to determine whether it is ethically justifiable to forgo medical treatment in such scenarios, clinical data must be interpreted alongside patient values, as well as in light of the physician's ethical commitments. Though much has been written about this ethical issue from religious perspectives (especially Christian and Jewish), little work has been done from an Islamic point of view. To fill the gap in the literature around Islamic bioethical perspectives on the matter, we derive a theologically rooted rubric for goals of care. We use the Islamic obligation for Muslims to seek medical treatment as the foundation for determining the clinical conditions under which Muslim physicians have a duty to treat. We next link the theological concept of accountability before God (taklīf) to quality-of-life assessment. Using this construct, we suggest that a Muslim physician is not obligated to maintain or continue clinical treatment when patients who were formerly of, or had the potential to be, mukallaf (the term for a person who has taklīf), are now not expected to regain that status by means of continued clinical treatment.

  7. End-of-life decision making in hematopoietic cell transplantation recipients.

    PubMed

    Tee, M Encarlita; Balmaceda, Gayle Z; Granada, Myra A; Fowler, Clara S; Payne, Judith K

    2013-12-01

    Discussions about futile treatment options for patients undergoing hematopoietic cell transplantation (HCT) can be difficult for healthcare providers. These discussions often are not initiated before transplantation, but only after a patient's healthcare status deteriorates. Nurses are in a key position to provide support and advocate for patients and their families in end-of-life (EOL) decisions. A need exists for increased autonomy for nurses as patient advocates. Implementation of multidisciplinary nursing education, both in schools and in the workplace, will support these new responsibilities. This article will provide a review of the literature related to the nurse role in the transition from active treatment (aggressive care) to EOL care in the HCT population.

  8. Are end-of-life patient education materials readable?

    PubMed

    Ache, K A; Wallace, L S

    2009-09-01

    Although established guidelines for developing low-literacy patient education materials are available, poorly designed material continue to be disseminated. We evaluated the readability and layout of English-language end-of-life patient education materials available on the Internet. Internet websites of five national palliative care organizations were searched to identify patient education materials for review. A convenience sample of 15 patient education materials per palliative care organization (n = 75) was downloaded and printed. The Simplified Measure of Gobbledygook (SMOG) was used to calculate the reading grade level (readability) of the text, while the layout features was assessed using criteria from the User-Friendliness Tool (UFT). The reading grade level of patient education materials ranged from 7(th) to 12(th) grade (mean +/- SD = 11.1 +/- 1.9). None of the patient education materials scored high on all UFT criteria. In particular, the greatest need was increasing the amount of white space and improving the way in which information was organized visually. Healthcare providers can only aid in the decision process, patients and their loved ones are ultimately responsible for making these choices. These decisions are important as choices need to be made about end-of-life care while patients are still cognitively able to do so. Well designed end-of-life patient education materials can offer a wealth of knowledge to assist and guide decision making. On the basis of these results, end-of-life patient education materials should be revised so that the average adult is able to understand the message presented, thereby enhancing his/her ability to make informed decisions.

  9. [Nutrition and hydration at the end of life].

    PubMed

    Devalois, Bernard; Broucke, Marion

    2015-04-01

    At the end of life the pleasure function of alimentation is to be preferred to its nutritive function. Artificial nutrition and hydration in an enteral or parenteral way are artificial life support techniques. Artificial nutrition and hydration are systematically justified for patients in curative phase that require it but not for patients in a terminal or agonal phase. The fear of death from hunger and thirst is not justified. It is more relevant of a symbolic and phantasmic dimension than of an objective reality. The practice of oral care is much more effective than installing an artificial hydration to improve the comfort of a patient at the very end of life. Withdrawing or withholding an artificial nutrition and hydration can prevent an unreasonable obstinacy prohibited by law.

  10. End-of-life treatment decision making: American Indians' perspective.

    PubMed

    Colclough, Yoshiko Yamashita; Brown, Gary M

    2014-08-01

    This study explored American Indians' end-of-life experiences in treatment decision making. Scarce knowledge about this population's perspective regarding end-of-life treatments has resulted in health care providers (HCPs) functioning at less than optimum levels. Using a community-based participatory research approach, open-ended interview data were collected and analyzed using a grounded theory method. Patient and family participants generally stated that the physicians made the treatment decisions for them, while HCPs believed that patients participated in informed autonomous treatment decision making. Both parties (HCPs and patients and families) were not aware of American Indian's psychological aspect that interfered with the exercise of the right of informed consent. This additional understanding would benefit them in order to result in ethically and legally sound practice of patient's autonomous treatment decision making.

  11. Contemporary psychological approaches to life at the end of life.

    PubMed

    Carpenter, Brian D

    2014-01-01

    When people have a serious life-limiting illness, physical symptoms are often prominent, both in the experience of the illness and in its treatment. No less important, however, are psychological symptoms. A holistic, bio-psycho-social-spiritual approach to quality of life near the end of life must address psychological distress of all types, including frank psychopathology, more moderate problems with living, and existential distress. Responding to mental health issues at the end of life requires (1) systematic and careful assessment, and (2) deployment of evidence-based treatments. In recent years, standardized assessment tools have been adapted or developed for use with people who have serious illness, and the same has happened with psychological treatments. Practitioners have several resources available to them. Given their practice orientation centered on meaningful engagement, occupational therapists can play an important role in responding to mental distress in patients with serious illness whose lives are becoming more circumscribed because of their medical condition or because of the mental distress itself. High-quality end-of-life care depends on scrupulous attention to the full spectrum of thoughts, feelings, and behaviors that unfold as death draws near.

  12. Legal aspects of end-of-life decisions in Italy: the penal relevance of the limitation of treatment in the terminally ill and the problem of causality by omission. The legal puzzle of end-of-life care in Italy: is therapeutic limitation in the terminally ill patients a crime of omission liable to prosecution?

    PubMed

    Fabris, E P; Piccinni, M

    2008-01-01

    The interruption of life support poses different problems for he who interrogates himself regarding the possible juridical role of omissible behaviour or activities by part of the physician when dealing with end-of-life interventions within the boundary of life and death. The present contribution proposes to trace the coordinates necessary to answer the main query regarding the obligations which may be incumbent on the physician. For this reason, the necessity to interpret the legal sanctions in a technical key is highlighted. This is performed in sight of a progressive and inevitable adaptation to problems which are the result of a social evolution, and to the conception of values which constitute an object responsibility, as renewed by the constitution. The laws that discipline crimes against life and individual integrity must be interpreted while keeping in mind that the objective of maintaining the patient in life must be integrated with the control of suffering and the guarantee of a dignified death. When identifying the principles which have to inspire the decisions during 'borderline or boundary situations', it is highlighted the way the physician has to resort to a just equilibrium between benefit, which can be reasonably expected, and sacrifice, which should be imposed, taking into consideration the criteria of good clinical practice, among which attention to the patient's will must be taken into consideration.

  13. How Can an Emergency Department Assist Patients and Caregivers at the End of Life?

    MedlinePlus

    ... Assist in the recognition and understanding of the natural changes associated with the end of life and ... of life to attempt the reversal of the natural death process and seek care starting in the ...

  14. Ethnic and cultural challenges at the end of life: setting the scene.

    PubMed

    Brown, Edwina A

    2014-09-01

    Patients with advanced kidney disease come from diverse ethnic, cultural and religious backgrounds. This potentially causes conflict when considering end-of-life management for patients from minority ethnic groups in a Western healthcare system that is dominated by the principles of patient autonomy, beneficence, non-maleficence and avoiding futile care. This article explores the impact of religion and culture on truth telling and futile care at end of life.

  15. End of life: a family narrative.

    PubMed

    Black, Helen K; Moss, Miriam S; Rubinstein, Robert L; Moss, Sidney Z

    2011-01-01

    This paper is based on ethnographic research that examines family reaction to an elderly husband and father's end of life. From a group of 30 families in our study (family defined as a widow aged 70 and over and two adult biological children between the ages of 40 and 60), we offer an extreme case example of family bereavement. We report our findings through the open-ended responses of a widow and two children who were interviewed ten months after the death of the husband and father. Three general themes emerged: (1) how the family imputes meaning to the end of life, (2) changes in the roles of family members, and (3) the family's ways of coping with the death, particularly through their belief system. A key finding is that the meaning family members find in their loved one's death is tied to the context of his death (how and where he died), their perception of his quality of life as a whole, and their philosophical, religious, and spiritual beliefs about life, death, and the afterlife that are already in place. PMID:21629740

  16. End of Life: A Family Narrative

    PubMed Central

    Black, Helen K.; Moss, Miriam S.; Rubinstein, Robert L.; Moss, Sidney Z.

    2011-01-01

    This paper is based on ethnographic research that examines family reaction to an elderly husband and father's end of life. From a group of 30 families in our study (family defined as a widow aged 70 and over and two adult biological children between the ages of 40 and 60), we offer an extreme case example of family bereavement. We report our findings through the open-ended responses of a widow and two children who were interviewed ten months after the death of the husband and father. Three general themes emerged: (1) how the family imputes meaning to the end of life, (2) changes in the roles of family members, and (3) the family's ways of coping with the death, particularly through their belief system. A key finding is that the meaning family members find in their loved one's death is tied to the context of his death (how and where he died), their perception of his quality of life as a whole, and their philosophical, religious, and spiritual beliefs about life, death, and the afterlife that are already in place. PMID:21629740

  17. Relational dialectics theory: Disentangling physician-perceived tensions of end-of-life communication.

    PubMed

    Amati, Rebecca; Hannawa, Annegret F

    2014-01-01

    Existing literature evidences the centrality of interpersonal communication during end-of-life care, but several barriers currently compromise its effectiveness. One of them is a common lack of communication skills among physicians in this challenging context. Several strategies have been suggested to enhance end-of-life interactions; however, a solid theoretical framework is needed for the development of effective systematic guidelines and interventions that can facilitate this goal. The present research study addresses this gap, choosing to focus particularly on the physician's perspective. It relies on Baxter and Montgomery's (1996) Relational Dialectics Theory to illuminate the complexity of reality doctors commonly face in interactions with their patients during end-of-life care. Semistructured interviews were conducted with 11 physicians in a southern canton of Switzerland who had experienced at least one end-of-life encounter with a patient. The interviews probed whether and under what conditions Baxter and Montgomery's theoretical contradictions translate to physicians' end-of-life communication with their patients and the patients' family members. The results replicated and extended the original theoretical contradictions, evidencing that Relational Dialectics Theory is very applicable to end-of-life conversations. Thus, this study adds a theoretically framed, empirically grounded contribution to the current literature on the communicative challenges physicians commonly face during end-of-life interactions with their patients and their patients' family members.

  18. Gross Hematuria: Assessment and Management at the End of Life

    PubMed Central

    Groninger, Hunter; Phillips, Jayne M.

    2013-01-01

    A distressing complication for patients and families, gross hematuria at the end of life challenges hospice and palliative care clinicians to utilize skills in medical and nursing management, communication and clarification of patient goals, and relief of symptom burden. Massive hemorrhage in the genitourinary tract can radically alter the terminal trajectory for patients and necessitate intensive interventions aimed at promoting comfort. Here, a case of gross hematuria in an adult hospice patient serves to broaching decision-making challenges and management strategies. PMID:24826082

  19. A demographic and prognostic approach to defining the end of life.

    PubMed

    Lamont, Elizabeth B

    2005-01-01

    Studies examining individuals' preferences reflect a broad consensus that the end of life is a period during which medical care should be different from that in other periods in patients' lives. More specifically, patients, families, and health care providers believe that medical care during this unique period should be home-based and focused on ameliorating patient symptoms through minimally invasive means rather than hospital-based acute care, and focused on extending life through invasive approaches. Of great concern is that other, empirical research shows that there is a large disparity between these preferred types of medical care at the end of life and the actual patterns of medical care that is observed before death, with most patients dying in acute-care hospitals while receiving invasive therapies. Without prospective recognition of this period, medical care cannot be appropriately changed. Existing research suggests that there are few clinical tools available to health care providers to aid in making prognostic estimates. Opportunities for future research include efforts to improve the prospective identification of the end of life and communication about the end of life. Specifically, development of valid and reliable predictive algorithms to help patients, families, and health care providers to identify the beginning of the end of life would be welcomed and should ideally be focused at the population level to ensure wide applicability. Similarly, research that works to improve communication between patients and health care providers on the matter of prognosis is also needed.

  20. Balancing dual roles in end-of-life research.

    PubMed

    Martin, Wanda; Grey, Meredith; Webber, Terry; Robinson, Linnea; Hartt, Nancy; Cairns, Moira; Stajduhar, Kelli

    2007-01-01

    Ethical and practical issues are sure to arise from the majority of research studies done with palliative populations. Whether it is feeling opportunistic, being emotionally available, or struggling with witnessing a gap in service and needs of the participants receiving care, nurses involved in research find a way to balance both roles to meet the needs of the participants as well as the study (McIlfatrick, Sullivan, & McKenna, 2006). This paper highlights some of the practical and ethical issues that arise when frontline nurses also take on the role of research assistant for studies with palliative populations. Specifically, the authors highlight their personal experiences based on their research assistant work on a study examining family caregiver coping in end-of-life cancer care. The authors discuss the "balancing act" of taking on these dual roles and offer recommendations on how to be with and approach people when doing research at the end of life using a framework based on Swanson's Theory of Caring (1991). PMID:17944314

  1. Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.

    PubMed

    Bernheim, Jan L; Distelmans, Wim; Mullie, Arsène; Ashby, Michael A

    2014-12-01

    This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

  2. Use of Opioids and Sedatives at End-of-Life

    PubMed Central

    Sim, Shin Wei; Ho, Shirlynn; Kumar, Radha Krishna Lalit

    2014-01-01

    Despite their proven efficacy and safety, opioid and sedative use for palliation in patients afflicted with cancer in Singapore have been shown to be a fraction of that in other countries. This paper explores the various psychosocial and system-related factors that appear to propagate this conservative approach to care in what is largely a western-influenced care practice. A search for publications relating to sedative and opioid usage in Asia was performed on PubMed, Google, Google Scholar, World Health Organization, and Singapore's government agency websites using search terms such as “opioids,” “sedatives,” “palliation,” “end-of-life-care,” “pain management,” “palliative care,” “cancer pain,” “Asia,” “Singapore,” and “morphine.” Findings were classified into three broad groups – system-related, physician-related, and patient-related factors. A cautious medico-legal climate, shortage of physicians trained in palliative care, and lack of instruments for symptom assessment of patients at the end of life contribute to system-related barriers. Physician-related barriers include delayed access to palliative care due to late referrals, knowledge deficits in non-palliative medicine physicians, and sub-optimal care provided by palliative physicians. Patients' under-reporting of symptoms and fear of addiction, tolerance, and side effects of opioids and sedatives may lead to conservative opioid use in palliative care as well. System-related, physician-related, and patient-related factors play crucial roles in steering the management of palliative patients. Addressing and increasing the awareness of these factors may help ensure patients receive adequate relief and control of distressing symptoms. PMID:25125876

  3. SVN 9 End-Of-Life testing

    NASA Technical Reports Server (NTRS)

    Hatten, Gregory E.

    1995-01-01

    SVN 9 was a GPS Block I research and development satellite. When it was launched in Jun. 1984, questions regarding the future performance of atomic frequency standards in orbit remained to be answered. In Mar. 1994, after performing for twice its designed life span, SVN 9 was deactivated as a member of the operational GPS satellite constellation. During the next two months, U.S. Air Force and Rockwell personnel performed various tests to determine just how well the atomic frequency standards had withstood ten years in the space environment. The results of these tests are encouraging. With a full constellation of Block II/IIA satellites on orbit, as well as the anticipated launch of the Block IIR satellites, results from the end of life testing will be helpful in assuring the continued success of the GPS program.

  4. Concordance of Family and Staff Member Reports about End of Life in Assisted Living and Nursing Homes

    ERIC Educational Resources Information Center

    Rich, Shayna E.; Williams, Christianna S.; Zimmerman, Sheryl

    2010-01-01

    Purpose: To identify differences in perspectives that may complicate the process of joint decision making at the end of life, this study determined the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care/assisted living communities and whether family and staff roles, involvement in care,…

  5. Developmental and Contextual Correlates of Elders' Anticipated End-of-Life Treatment Decisions

    ERIC Educational Resources Information Center

    Decker, Ilene M.; Reed, Pamela G.

    2005-01-01

    The purpose of this study was to gain insight into developmental and contextual correlates of the aggressiveness in treatment that community-based elders anticipate they will desire at the end of life. Elders completed questionnaires to measure 4 developmental factors (integrated moral reasoning, self-transcendence, past experience with…

  6. A preliminary study examining chaplains' support for veterans at the end of life.

    PubMed

    Kopacz, Marek S; Feldstein, Bruce D; Asekoff, Cecille Allman; Kaprow, Maurice S; Smith-Coggins, Rebecca; Connery, April L

    2016-06-01

    This descriptive study examines the involvement of professional chaplains in addressing loss of dignity, inconsequential life or not having a legacy, fear of burdensomeness, and fear of pain in veterans at the end of life. A convenience sample of Jewish chaplains responded to an online survey gauging their involvement in these areas. Results are presented descriptively. Most respondents stated either rarely (≤1 x month) or sometimes (≥1 x month) encountering veterans with end-of-life issues. Respondents reported varying degrees of involvement in supporting veterans at the end of life with respect to the aforementioned areas. As research into the end-of-life care needs of veterans continues to develop, recognising chaplains as a source of both spiritual and psychosocial support can serve as an opportunity for better meeting the needs of this population. PMID:27349849

  7. The End of Life Nursing Education Nursing Consortium project.

    PubMed

    Ferrell, Betty; Malloy, Pam; Virani, Rose

    2015-04-01

    In 2000, the City of Hope Medical Center and the American Association of Colleges of Nursing (AACN) developed the End-of-Life Nursing Education Consortium (ELNEC)-Core curriculum to educate nurses and other healthcare professionals on end of life care, so that attention to the dying could be improved and their unique needs addressed. Since its inception, over 19,500 nurses and other professionals have attended the ELNEC train-the-trainer courses. Upon course completion, the participants, often nurse educators, returned to their schools, healthcare systems, and communities and introduced the ELNEC content into nursing curricula, annual competencies, and new employee orientation. In 2005, the national ELNEC Project Team concluded that an international curriculum should be developed. The first ELNEC International course was launched in 2006 in Salzburg, Austria. Since that time, trainers have come from 85 countries world-wide, and the curriculum has been translated into eight languages. In 2015, three international courses will be presented: in Beijing, China, Kipkaren, Kenya, and Salzburg, Austria.

  8. Ethics review: End of life legislation – the French model

    PubMed Central

    Baumann, Antoine; Audibert, Gérard; Claudot, Frédérique; Puybasset, Louis

    2009-01-01

    French law 2005-370 of April 22, 2005 (Leonetti's law) brings new rights to patients and clarifies medical practices regarding end of life care. This new law prohibits unreasonable obstinacy in investigations or therapeutics and authorizes the withholding or withdrawal of treatments when they appear "useless, disproportionate or having no other effect than solely the artificial preservation of life". Relief from pain is a fundamental right of patients. With regard to pain control, the law also allows doctors to dispense to patients "in an advanced or final phase of a serious and incurable affliction" anti-pain treatments as needed, even if these treatments, as a side effect, hasten their death. The drafting of advance directives regarding end of life constitutes a new right of patients. The decision to withdraw or withhold a treatment from a patient unable to express their will has to take into account the wishes they might have expressed through advance directives, and/or the wishes of a trusted person or, lastly, of the family. Before making any decision, physicians should respect a collegial medical procedure. Euthanasia defined as the act of terminating one's life on a patient's explicit request remains illegal. PMID:19291258

  9. The role of palliative rehabilitation in the preservation of personhood at the end of life

    PubMed Central

    R Krishna, L K; Yong, C Y L; Koh, S M C

    2014-01-01

    Progressive advancements in the fields of medicine, oncology and palliative care have seen significant gains in the life expectancy but have also resulted in patients living longer with the burdens of cancer. It is within the sphere of end-of-life care that the role of palliative rehabilitation comes into its own in addressing the effects of increased physical and psychological morbidity that accompany many of these prognostic gains. Focusing on the cancer journey, we highlight the impact of rehabilitative measures on efforts to preserve the personhood of a patient with metastatic renal cell carcinoma and thus maintain her dignity and quality of life and provide her with appropriate and effective holistic care at the end of life. Through employing the Ring Theory of Personhood, the critical role of the complementary aspects of palliative rehabilitation in end-of-life care is brought to the fore. PMID:25008339

  10. Integration of end-of-life education into a community health nursing course.

    PubMed

    Pullis, Bridgette Crotwell

    2013-01-01

    Student nurses and novice nurses report that they received little in their nursing education to adequately prepare them for the death of a patient. The American Association of Colleges of Nursing's (AACN) competencies for end-of-life care assert the need for competent nursing care at the time of death. To prepare students to care for dying patients and their families, a hospice clinical experience in a community health nursing course was designed to facilitate the development of competence in caring for adults and children at the end of life. At the end of the semester, the students were able to demonstrate principles of pain and symptom management and to communicate the goals and philosophy of hospice care to dying patients and their families. The students also demonstrated the ability to advocate for individuals at the end of life through the provision of information about hospice care, especially the benefits for timely referral to hospice and palliative care. The incorporation of a clinical experience into a community health nursing course that focuses on end-of-life care is an effective approach to teaching both community health concepts and care of dying patients. Such an approach incorporates essential content without adding to already extensive nursing curricula.

  11. Help patients and families as they struggle with end-of-life issues.

    PubMed

    2016-05-01

    When patients appear to be reaching the end of life, case managers should find out their wishes, alert the treating physician and the rest of the staff, and ensure that patients' wishes are carried out. In an effort to encourage discussions about end-of-life care, the Centers for Medicare & Medicaid Services (CMS) has begun paying physicians for consultations on advance care planning. CMS' push toward pay for performance and bundled payments creates financial incentives for hospitals to consider alternatives to admitting patients as inpatients. Providers' feelings sometimes make them hesitant to talk about end-of-life issues with patients and family members. Case managers should take a patient-centered approach and find out patients' goals before bringing up hospice care, and educate family members on what to expect when they get home. PMID:27183773

  12. Choices at Space Station End of Life

    NASA Astrophysics Data System (ADS)

    Burke, J. D.; Coderre, K. M.; Dator, J. A.

    Extending International Space Station (ISS) operations will expand the scope for deciding its fate at its end of life. In this paper we examine the choices likely to be available at that distant unknown day when it is decided, for whatever reasons, to bring crew-directed engineering and science operations to a close. Of course a premature accidental termination is possible at any time, and measures to cope with that (and return to normal if possible) should be kept ready and augmented as ISS service capacities improve, but here we do not focus on accidents. Rather, we consider what may be done with an old but functioning spacecraft after it is declared surplus. We use the technique of Futures Studies to look at the choices. Without attempting prediction, futurists develop a set of empirically-based alternate futures, describe the likely consequences of each, and point to preferred outcomes. For the ISS at end of scheduled operation the choices are in three classes: DOWN, STAY, or UP. In the DOWN choice, after possible salvage and transfer of long-running investigations to another (e.g., Chinese-led) international station, the ISS is commanded to descend and burn up. The STAY choice, not viable in the long run, might be chosen to provide time for later decisions, but eventually it would prove impractical to continue re-boosting to maintain the station in Low Earth Orbit (LEO). In the UP choice the ISS is propelled, by heavy-lift boost impulses or a low-thrust spiral-out or a combination of both, into a high orbit with a lifetime of hundreds of years, opening the prospect of a wide variety of options to be compared in search of a preferred longer-term future. The decision to boost the ISS into a high orbit could be completely rational based on any of several arguments, or it could be partly irrational as in the case of the USS Constitution, an eighteenth- century warship saved from the ship-breakers by a poem.

  13. When Safe Oral Feeding Is Threatened: End-of-Life Options and Decisions

    ERIC Educational Resources Information Center

    Groher, Michael E.; Groher, Tammy Peutz

    2012-01-01

    Managing one's dysphagia at the end-of-life is challenging for the patient and the medical care team. Decisions surrounding oral feeding safety and the use of artificially administered hydration and nutrition require the medical care team to provide its best advice, taking into consideration the patient's health-related goals and the impact the…

  14. End-of-life management in patients with amyotrophic lateral sclerosis.

    PubMed

    Connolly, Sheelah; Galvin, Miriam; Hardiman, Orla

    2015-04-01

    Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often rapid decline and death of people with terminal illnesses such as amyotrophic lateral sclerosis (ALS). By contrast, data suggest that early and open discussion of end-of-life issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear. Patients' perspectives regarding end-of-life interventions and use of technologies might differ from those of the health professionals involved in their care, and health-care professionals should recognise this and respect the patient's autonomy. Advance care directives can preserve autonomy, but their legal validity and use varies between countries. Clinical management of the end of life should aim to maximise quality of life of both the patient and caregiver and, when possible, incorporate appropriate palliation of distressing physical, psychosocial, and existential distress. Training of health-care professionals should include the development of communication skills that help to sensitively manage the inevitability of death. The emotional burden for health-care professionals caring for people with terminal neurological disease should be recognised, with structures and procedures developed to address compassion, fatigue, and the moral and ethical challenges related to providing end-of-life care. PMID:25728958

  15. End-of-life management in patients with amyotrophic lateral sclerosis.

    PubMed

    Connolly, Sheelah; Galvin, Miriam; Hardiman, Orla

    2015-04-01

    Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often rapid decline and death of people with terminal illnesses such as amyotrophic lateral sclerosis (ALS). By contrast, data suggest that early and open discussion of end-of-life issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear. Patients' perspectives regarding end-of-life interventions and use of technologies might differ from those of the health professionals involved in their care, and health-care professionals should recognise this and respect the patient's autonomy. Advance care directives can preserve autonomy, but their legal validity and use varies between countries. Clinical management of the end of life should aim to maximise quality of life of both the patient and caregiver and, when possible, incorporate appropriate palliation of distressing physical, psychosocial, and existential distress. Training of health-care professionals should include the development of communication skills that help to sensitively manage the inevitability of death. The emotional burden for health-care professionals caring for people with terminal neurological disease should be recognised, with structures and procedures developed to address compassion, fatigue, and the moral and ethical challenges related to providing end-of-life care.

  16. Safety issues at the end of life in the home setting.

    PubMed

    Edwards, Susanna B; Galanis, Effie; McGarvey, Kay; Prestwich, Catherine; Ritcey, Sheila; Wulf, Karina

    2014-01-01

    Patients who choose care in a home setting at the end of life may be at risk because of their declining cognitive or physical abilities, environmental hazards in the home, or caregiving issues. Although safety concerns in hospitals have been well documented, knowledge about safety issues in the home setting is limited. This qualitative, focused-ethnographic study was conducted to understand the safety issues that occur in the home setting from the perspective of home care clinicians who manage these issues for end-of-life patients. PMID:24978573

  17. [Cultural aspects of ethical decisions at the end of life and cultural competence].

    PubMed

    Ilkilic, Ilhan

    2008-08-01

    Advances in medical science and technology offer new medical interventions at the end of life. These new medical measures create new ethical issues, which increase in complexity in a multicultural society. This paper discusses three cases, in which cultural value systems play a decisive role. Change in the goals of therapy, truth telling of diagnosis and prognosis and presumed will of the patient are the key ethical points in these cases. Because of growth in minority populations in Germany, it is foreseeable that the number of these issues will increase in the near future. The author of this paper argues that concepts and measurements must be urgently developed in health care systems to help the medical staff in their daily practises. According to him, cultural competence and cultural sensitive advanced directives can be helpful for solving complex ethical problems at the end of life. Other interventions and measurements were also described for improved end-of-life care in multicultural setting.

  18. [Quality end of life in uremic patients: theory and practice].

    PubMed

    Galassi, Andrea; Giovenzana, Maria Enrica; Prolo, Federico; Colombo, Anna Maria; Orsi, Luciano; Fucci, Sergio; Sorbara, Loredana; Viganò, Silvia; Clementi, Chiara; Falcaro, Susi; Auricchio, Sara; Dozio, Beatrice; Scanziani, Renzo

    2016-01-01

    The rate of fragile elderly patients affected by chronic kidney disease stage 5-5D is rapidly increasing. The decision making process regarding the start and the withdrawal of dialysis is often difficult for all those involved: patients, relatives, nephrologists and renal nurses. Therefore nephrologists and renal nurses are called to rapidly improve their theoretical and practical competence about the end-of-life care. The quality of clinical intervention and management requires a sound expertise in the ethical, legal, organizational and therapeutic aspects, not trivial nor even deductible from purely private and individual opinions nor from traditional medical practice. The present paper discusses the ethical and legal implications related to the start rather than to withdrawn from dialysis, preferring a non-dialysis medical treatment and / or palliative care. Operational aspects regarding the regional network of palliative care, the path of shared decision making process and a systematic approach to optimize medical and nursing interventions through the Liverpool Care Pathway program are discussed thereafter. PMID:27374389

  19. Parental needs in infant's end-of-life and bereavement in NICU: A qualitative study

    PubMed Central

    Hasanpour, Marzieh; Sadeghi, Narges; Heidarzadeh, Mohammad

    2016-01-01

    Background and Aims: Newborn death is an unexpected outcome for parents. Parents face with several needs in infant end-of-life. The health care team is responsible for meet these needs. This qualitative study aim was to explore of parental needs in infant end-of-life and bereavement. Materials and Methods: For this qualitative study, 24 single semi-structure interviews were done. A qualitative content analysis method was used. Sampling conducted on purposeful with maximum variation in five Neonatal Intensive Care Unit (NICU) environments in Isfahan city. Inclusion criteria for nurses and doctors were having at least one experience of caring for an infant and their family at end-of-life. Inclusion criteria for parents and their families were having at least one infant at end-of-life or had lost their infant for 6 months before in NICU. Results: Data analysis uncovered two main themes. Family's support needs with two subthemes (family's support needs before infant's death and family's support needs after infant's death) and family's preparatory needs upon infant's death with two subthemes (management of the bad news of infant's death by treatment team and management of the bad news of infant's death by family). Discussion: Mourning mother's need for her husband's presence by her side, getting hospitalized in a separate room, and management of infant's death news by father and family were among items rarely pointed out in other studies. Exploration of these needs cab be helpful for the health care team for providing care. PMID:27500172

  20. Physician orders for life-sustaining treatment form: honoring end-of-life directives for nursing home residents.

    PubMed

    Meyers, Judy L; Moore, Crystal; McGrory, Alice; Sparr, Jennifer; Ahern, Melissa

    2004-09-01

    Physician Orders for Life-Sustaining Treatment (POLST) form provides choices about end-of-life care and gives these choices the power of physician orders. The POLST form assures end-of-life choices can be implemented in all settings, from the home through the health-care continuum. The use of the POLST form was evaluated in a pilot study in nursing homes in two eastern Washington counties. Chart reviews and template analysis of interviews revealed the POLST form accurately conveyed end-of-life wishes in 19 of 21 cases. An informed consent process was evidenced in 16 of 21 cases, and the POLST form was congruent with residents' existing advance directives for health care. The findings support the continued use, development, and evaluation of this promising tool for improving end-of-life care. PMID:15471062

  1. [The End-of-life Clinic: results from the first year].

    PubMed

    Snijdewind, Marianne C; Onwuteaka-Philipsen, Bregje D; Willems, Dick L

    2016-01-01

    In 2012 the Dutch Dying with Dignity Society (NVVE) founded the End-of-life Clinic, which provides euthanasia or help with assisted suicide at the request of people whose own doctor will not carry out euthanasia if the legal requirements of due care can been fulfilled. As part of an independent evaluation, we looked at the applications received by the End-of-life Clinic during its first year and at the outcomes of these applications. We wrote an extensive article on this subject which was published in JAMA Internal Medicine. One of the most important outcomes is that the End-of-life Clinic rejected a large percentage of the requests for its services, mainly as these came from people with psychiatric conditions. This means that the fears that some people have concerning the alleged End-of-life Clinic policy 'you ask, we comply', appear to be unfounded. On the other hand, the End-of-life Clinic is certainly not the solution for all those people whose requests to their own doctor fall on deaf ears. PMID:26840939

  2. [Fear of progression and end-of-life fear in COPD patients].

    PubMed

    Stenzel, N; Rief, W; Kühl, K; Pinzer, S; Kenn, K

    2012-02-01

    Anxiety and depression are prevalent comorbid conditions in COPD. Furthermore, diseases related anxieties (fear of progression, end-of-life fear) occur very often. Anxiety can have a negative impact on patients' quality of life and is sometimes even considered as a risk factor for re-hospitalisation. There are only a few studies that focus on disease related anxieties in COPD. The aim of our study was to investigate the associations between disease related anxieties (fear of progression, end-of-life fear), psychological health status and quality of life in COPD patients. 132 patients with COPD (GOLD II-IV) participated in the study. Results of a MANOVA showed no differences between diseases related anxieties among patients with different disease severity (GOLD II-IV). Furthermore, the results showed significant associations between end-of-life fear, fear of progression, depression and quality of life. Further analyses showed that there is a need for managing end-of-life fears and improving end-of-life care. Overall, our study showed, that health disease related anxieties play an important role in COPD and still do not receive enough attention.

  3. Preparing for the End of Life

    MedlinePlus

    ... Thanks in large part to advances in public health, medicine, and health care, most Americans no longer die suddenly from ... National Institute on Aging | U.S. National Library of Medicine | National Institutes of Health | U.S. Department of Health & Human Services Contact us | ...

  4. [Issues and Challenges of End of Life at Home for the Treating Physician].

    PubMed

    Marthy, Sibylle

    2015-02-25

    Palliative care and end of life at home remains a challenge for the general practitioner. The success is related to many factors, including the situation of the patient, his social and family environment, the presence of the various health professionals and the physician's engagement. Beyond the medical-technical skills, he plays a central coordinating role in an interdisciplinary team regularly adjusted according to the patient's evolution. The positive emotional impact on bereaved relatives after the end of life at home is often underestimated by the physician. PMID:25711786

  5. [Dementia, end of life and euthanasia].

    PubMed

    Bier, J C; Salmon, E; Ivanoiu, A

    2014-09-01

    Among legislative criteria granting the right to practice euthanasia or assisted suicide, there are systematically four major elements. Precisely, any request must be voluntary, persistent, to be well thought and well informed. Such euthanasia raises numerous difficult questions in case of dementia. It also justifies thinking about possibilities that can offer specific arrangements of anticipated demands in such peculiar cases. Empirical experiences show us that it applies with difficulties in practice. Finally, to avoid that a big majority of these demands would find themselves not applied in practice, it would certainly be necessary to add to it structural valuation of advance care planning, and assure its recognition and development. These should not be limited to a single pathological target but would address all of us to increase advance care planning initiation, which remains the most limiting factor of such any early but continuous procedure. PMID:25675648

  6. [Dementia, end of life and euthanasia].

    PubMed

    Bier, J C; Salmon, E; Ivanoiu, A

    2014-09-01

    Among legislative criteria granting the right to practice euthanasia or assisted suicide, there are systematically four major elements. Precisely, any request must be voluntary, persistent, to be well thought and well informed. Such euthanasia raises numerous difficult questions in case of dementia. It also justifies thinking about possibilities that can offer specific arrangements of anticipated demands in such peculiar cases. Empirical experiences show us that it applies with difficulties in practice. Finally, to avoid that a big majority of these demands would find themselves not applied in practice, it would certainly be necessary to add to it structural valuation of advance care planning, and assure its recognition and development. These should not be limited to a single pathological target but would address all of us to increase advance care planning initiation, which remains the most limiting factor of such any early but continuous procedure.

  7. End-of-life issues in advanced dementia

    PubMed Central

    Arcand, Marcel

    2015-01-01

    Abstract Objective To answer frequently asked questions about management of end-stage pneumonia, poor nutritional intake, and dehydration in advanced dementia. Sources of information Ovid MEDLINE was searched for relevant articles published until February 2015. No level I studies were identified; most articles provided level III evidence. The symptom management suggestions are partially based on recent participation in a Delphi procedure to develop a guideline for optimal symptom relief for patients with pneumonia and dementia. Main message Feeding tubes are not recommended for patients with end-stage dementia. Comfort feeding by hand is preferable. Use of parenteral hydration might be helpful but can also contribute to discomfort at the end of life. Withholding or withdrawing artificial nutrition and hydration is generally not associated with manifestations of discomfort if mouth care is adequate. Because pneumonia usually causes considerable discomfort, clinicians should pay attention to symptom control. Sedation for agitation is often useful in patients with dementia in the terminal phase. Conclusion Symptomatic care is an appropriate option for end-stage manifestations of advanced dementia. The proposed symptom management guidelines are based on a literature review and expert consensus. PMID:25873701

  8. End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making

    PubMed Central

    Schüklenk, Udo; Van Delden, Johannes J M; Downie, Jocelyn; Mclean, Sheila A M; Upshur, Ross; Weinstock, Daniel

    2011-01-01

    This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. PMID:22085416

  9. [Two Cases of Caudal Alcohol Block for Perineal Pain that Occurred in Cancer End-of-Life].

    PubMed

    Takahashi, Masahiro; Takahara, Hiroshi; Wakabayashi, Takanobu

    2016-06-01

    We experienced two cases of end-of-life cancer patients with perineal pain, whose pain was relieved by 5 ml absolute ethanol caudal block. Although the first injection was ineffective, the second injection resulted in significant relief of pain in both cases. Although the indication should be carefully considered, alcohol caudal block is an analgesic method worth considering for the end-of-life cancer patients complaining of perineal pain. PMID:27483665

  10. End-of-Life Preference Discussions between Elderly Japanese American Men and Their Families: The Honolulu-Asia Aging Study

    PubMed Central

    Okamoto, Lauren; Bell, Christina; Fong, Kaon; Masaki, Kamal

    2015-01-01

    Background: Challenging cases in geriatrics often involve lack of communication regarding end-of-life preferences and cultural issues. There have been no previous population-based studies on acculturation and end-of-life preference discussions among older Japanese-Americans. Methods: The Honolulu-Asia Aging Study is a continuation of the Honolulu Heart Program, a longitudinal cohort study in Japanese-American men in Hawai‘i that began in 1965. In the 2009–10 exam, participants identified a proxy informant who answered questions about their knowledge of the men's end-of-life preferences. We studied the relationship between end-of-life preference discussions and completion of a written advance directive and actual preferences for end-of-life care, as well as associations between discussions and demographic and cultural factors. The Cultural Assimilation Scale (CAS) consisted of 8 questions assessing degree of Japanese identity and lifestyle. Results: Among 350 participants aged 89–108 years, proxy informants were wives (29.4%), daughters (29.4%), sons (22.0%), other relatives (8.0%) and others (mostly paid caregivers, 11.1%). On proxy interview, 70.7% reported end-of-life preference discussions and 29.3% did not. Those who had end-of-life preference discussions were more likely to have completed a written advance directive compared to those without discussions (93.6% vs 61.5%, P < .0001). Even among those with discussions, many proxies were unsure about certain preferences, including tube feeding (27.4%), nursing home care (23.8%) and dementia care (20.2%). Factors associated with having end-of-life preference discussions included Christian religion (vs Buddhist/Shinto, OR = 1.85, 95% CI = 1.00−3.41, P < .05) and daughter as proxy informant (vs wife, OR = 2.34, 95% CI = 1.20−4.54, P = .01), but no associations with age, education, marital status or acculturation scores. Conclusion: Among this oldest-old population, there were almost 30% who did not have end-of-life

  11. Predicting hospital aggression in secure psychiatric care

    PubMed Central

    Priday, Lee J.; Ireland, Carol A.; Chu, Simon; Kilcoyne, Jennifer; Mulligan, Caroline

    2016-01-01

    Background Risk assessment instruments have become a preferred means for predicting future aggression, claiming to predict long-term aggression risk. Aims To investigate the predictive value over 12 months and 4 years of two commonly applied instruments (Historical, Clinical and Risk Management - 20 (HCR-20) and Violence Risk Appraisal Guide (VRAG)). Method Participants were adult male psychiatric patients detained in a high secure hospital. All had a diagnosis of personality disorder. The focus was on aggression in hospital. Results The actuarial risk assessment (VRAG) was generally performing better than the structured risk assessment (HCR-20), although neither approach performed particularly well overall. Any value in their predictive potential appeared focused on the longer time period under study (4 years) and was specific to certain types of aggression. Conclusions The value of these instruments for assessing aggression in hospital among patients with personality disorder in a high secure psychiatric setting is considered. Declaration of interest J.L.I., C.A.M. and J.K. are employed by the trust where the data were collected. Copyright and usage © The Royal College of Psychiatrists 2016. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) licence. PMID:27703760

  12. End-of-Life and Palliative Care for People with Intellectual Disabilities Who Have Cancer or Other Life-Limiting Illness: A Review of the Literature and Available Resources

    ERIC Educational Resources Information Center

    Tuffrey-Wijne, Irene; Hogg, James; Curfs, Leopold

    2007-01-01

    Background: As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods: A range of databases and the World Wide Web were searched for relevant…

  13. Supporting family caregivers at the end of life: "they don't know what they don't know".

    PubMed

    Rabow, Michael W; Hauser, Joshua M; Adams, Jocelia

    2004-01-28

    Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.

  14. Meeting the needs of Somali patients at the end of life.

    PubMed

    Swetz, Keith M; Jama, Abdi A; Quirindongo-Cedeno, Onelis; Hatchett, Lena

    2011-12-01

    Given the large number of Somali refugees living in Minnesota, it is likely that Minnesota physicians will encounter Somali patients, some of whom will have serious illnesses. Although our knowledge of Somali expectations about health care is growing, little has been written about the Somali people's views of treatment for life-threatening illnesses or their ideas about end-of-life care. After encountering a Somali man with advanced cancer in our practice, we attempted to learn about the Somali view of death and dying and the kind of treatment Somali patients might want during their final days. We share what we learned so that others might provide more culturally competent end-of-life care for Somali patients in the future.

  15. Challenges Facing Families at the End of Life in Three Settings

    PubMed Central

    Kehl, Karen A.; Kirchhoff, Karin T.; Kramer, Betty J.; Hovland-Scafe, Cyndi

    2010-01-01

    This study examined the challenges faced by family members at the end of life in different care settings and how those challenges compare across settings. A total of 30 participants, who had a family member die in inpatient hospice, a skilled nursing facility or a community support program were interviewed. Semi-structured interviews were recorded and transcribed. Text was coded using qualitative thematic analysis. Themes were determined by consensus. Twelve challenges were identified across care sites. Two themes emerged in all three settings: bearing witness and the experience of loss. The study findings contribute to our knowledge of family perceptions of care in different settings and raises awareness of the need for further research describing the experiences at the end of life in different settings and the importance of creating and testing interventions for both setting specific needs and universal issues. PMID:20563315

  16. Meeting the needs of Somali patients at the end of life.

    PubMed

    Swetz, Keith M; Jama, Abdi A; Quirindongo-Cedeno, Onelis; Hatchett, Lena

    2011-12-01

    Given the large number of Somali refugees living in Minnesota, it is likely that Minnesota physicians will encounter Somali patients, some of whom will have serious illnesses. Although our knowledge of Somali expectations about health care is growing, little has been written about the Somali people's views of treatment for life-threatening illnesses or their ideas about end-of-life care. After encountering a Somali man with advanced cancer in our practice, we attempted to learn about the Somali view of death and dying and the kind of treatment Somali patients might want during their final days. We share what we learned so that others might provide more culturally competent end-of-life care for Somali patients in the future. PMID:22372048

  17. Mediation and surrogate decision-making for LGBTQ families in the absence of an advance directive : comment on "Ethical challenges in end-of-life care for GLBTI individuals" by Colleen Cartwright.

    PubMed

    Wahlert, Lance; Fiester, Autumn

    2012-09-01

    In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors advocate for the implementation of clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable. PMID:23180338

  18. Continuous subcutaneous levetiracetam in the management of seizures at the end of life: a case report.

    PubMed

    Wells, Geoffrey Howard; Mason, Louise D; Foreman, Emma; Chambers, John

    2016-03-01

    We report the case of a man who developed seizures on a background of recurrent metastatic squamous cell carcinoma with intracranial involvement. Initial seizure control with enteral levetiracetam was achieved, and when enteral and intravenous (i.v.) access was no longer available, a continuous subcutaneous infusion (CSCI) of levetiracetam successfully controlled his seizures without the need for sedating anticonvulsants. As a result, end-of-life care was able to be given with the patient retaining the ability to communicate with his family and healthcare staff. This report adds to the sparse but growing evidence base for the use of subcutaneous levetiracetam to manage seizures in palliative and end-of-life care. PMID:26744359

  19. People with chronic obstructive pulmonary disease at the end of life: a review of the literature.

    PubMed

    Goodridge, Donna

    2006-08-01

    Based on 2004 data, chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death in the world, surpassed only by cardiovascular disease, pneumonia and HIV/AIDS. The terminal trajectory of patients with COPD is distinct from that of cancer patients. The unpredictability of prognosis for people with COPD poses different challenges in end-of-life decision-making from those faced by individuals with terminal cancer. The use of a traditional cancer-based service model to predict the need for palliative care services is not helpful for people with COPD. Drastic improvements in end of life care for the people with COPD are essential, especially with the projected rise in cases over the coming years.

  20. Informed shared decision-making in planning for the end of life.

    PubMed

    Price, Jane

    In recent years, a number of shortcomings in the NHS have been identified in end-of-life care delivered in hospital for people with long-term conditions other than terminal cancer. This article gives an overview of the findings of a Dignity in Care travel scholarship, which was undertaken to establish whether an American shared informed decision aid, specifically designed to initiate therapeutic conversations for this patient group, might reasonably be adopted in an NHS setting. One tool specifically for this purpose was in use in the USA at the time, and its efficacy formed part of a broader research study being carried out at Dartmouth Hitchcock Medical Center (DHMC) in New England. Concurrently in the UK, The Health Foundation supported a 3-year study that focused exclusively on the development of a range of 'option grids' for clinical interventions and did not include an end-of-life model.

  1. Beyond advance directives: importance of communication skills at the end of life.

    PubMed

    Tulsky, James A

    2005-07-20

    Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal. In the context of the case of a man with metastatic cancer for whom an advance directive was unable to prevent a traumatic death, I review the challenges in creating and implementing advance directives, discuss factors that can affect clear decision making; including trust, uncertainty, emotion, hope, and the presence of multiple medical providers; and offer practical suggestions for physicians. Advance care planning remains a useful tool for approaching conversations with patients about the end of life. However, such planning should occur within a framework that emphasizes responding to patient and family emotions and focuses more on goals for care and less on specific treatments.

  2. Self-determination, end-of-life decisions, and the role of nurse practitioners.

    PubMed

    Bradley, Heather

    2015-01-01

    Nurse practitioners should be aware that societal changes could lead to their being asked to actively assist terminally ill patients who wish to end their lives, as opposed to their current supportive role in palliative care. With physician staff shortages and the need for nurse practitioners to fill the gaps, end-of-life responsibilities could be placed in the hands of nurse practitioners, rather than being reserved for physicians alone (Sagon, 2013). End-of-life matters raise uncertainties about the nurse practitioner role because it differs state by state, relates to ethics, reflects the religious beliefs of those involved, and concerns the conflict of nurses simultaneously caring for their patients while advocating for their right to self-determination in choosing to end their lives.

  3. [Desire to die, desire to live at the end of life].

    PubMed

    Mazzocato, C; Benaroyo, L

    2009-05-13

    Since a couple of years, physicians are confronted with an increasing request of end of life patients asking for a dying facilitated process. The reasons for this are multiple and complex. Existential suffering, increased by depression, a feeling of loss of meaning or dignity and/or being a burden, seems to be a significant factor. Social isolation and physical symptoms seem to be only contributory. The identification of "protecting elements" such as spiritual well-being or a preserved sense of dignity offers new opportunities for care. Providing a space for dialogue by exploring the patient's expectations and fears, his knowledge of care options available at the end of life, his own resources and difficulties frequently contribute to decrease suffering. PMID:19526978

  4. Informed shared decision-making in planning for the end of life.

    PubMed

    Price, Jane

    In recent years, a number of shortcomings in the NHS have been identified in end-of-life care delivered in hospital for people with long-term conditions other than terminal cancer. This article gives an overview of the findings of a Dignity in Care travel scholarship, which was undertaken to establish whether an American shared informed decision aid, specifically designed to initiate therapeutic conversations for this patient group, might reasonably be adopted in an NHS setting. One tool specifically for this purpose was in use in the USA at the time, and its efficacy formed part of a broader research study being carried out at Dartmouth Hitchcock Medical Center (DHMC) in New England. Concurrently in the UK, The Health Foundation supported a 3-year study that focused exclusively on the development of a range of 'option grids' for clinical interventions and did not include an end-of-life model. PMID:27081732

  5. End-of-Life Preferences: A Theory-Driven Inventory

    ERIC Educational Resources Information Center

    Bonin-Scaon, Sylvie; Munoz Sastre, Maria Teresa; Chasseigne, Gerard; Sorum, Paul C.; Mullet, Etienne

    2009-01-01

    The study aimed at making a theory-driven inventory of end-of-life preferences. Participants were asked about a variety of preferences representing all eight motivational states described in Apter's Metamotivational Theory (AMT; Apter, 2001). Data from a convenience sample of 965 community participants and a convenience sample of 81 persons…

  6. Evidence-based guidelines for pressure ulcer management at the end of life.

    PubMed

    Langemo, Diane; Haesler, Emily; Naylor, Wayne; Tippett, Aletha; Young, Trudie

    2015-05-01

    It is important to develop an individualised plan of care for people at the end of life to prevent pressure ulcers, and to treat them if they do occur. This article discusses patient and risk assessment, prevention and care for pressure ulcers for the palliative care patient and the recommendations given in the palliative care section of the Prevention and Treatment of Pressure Ulcers: Clinical Practice Guideline (National Pressure Ulcer Advisory Panel, European Pressure Ulcer Advisory Panel and Pan Pacific Pressure Injury Alliance, 2014).

  7. [End-of-life with dementia in Dutch antroposofic and traditional nursing homes].

    PubMed

    Gijsberts, M J H E; van der Steen, J T; Muller, M T; Deliens, L

    2008-12-01

    Every year more than 20,000 people with dementia die in Dutch nursing homes and this number steadily increases. Therefore, the importance of good end-of-life care for these patients including physical, psychosocial and spiritual care is evident. Although the training standards for Dutch nursing home physicians and nurses share a common standard, the philosophy of a nursing home may affect end-of-life care strategies for the residents. We compared end of life of nursing home residents with dementia in two anthroposophic and two traditional nursing homes in a retrospective study using the most specific instrument available: the End-of-Life in Dementia scales (EOLD). Family caregivers completed the EOLD questionnaire. There was no difference in mean Satisfaction With Care scale scores between both types of nursing homes: 32.9 (SD 4.3) and 31.6 (SD 4.9), respectively. The anthroposophic nursing homes had significant higher scores on the 'Symptom Management' ((32.9 (SD 7.5) versus 26.9 (SD 9.5)), and 'Comfort Assessment in Dying' scales (34.0 (SD 3.9) versus 30.8 (SD 5.8)) and on its subscale Well Being (7.7 (SD 1.2) versus 6.7 (SD 2.1)). Our results suggest that death with dementia was more favourable in anthroposophic nursing homes than in regular homes. The results inform further prospective studies on nursing homes how this and other philosophies are translated into daily nursing home practice, including decision making in multi-disciplinary teams, family consultation, and complementary non-pharmacological therapies.

  8. Talking about end-of-life preferences in marriage: applying the theory of motivated information management.

    PubMed

    Rafferty, Katherine A; Cramer, Emily; Priddis, DeAnne; Allen, Mike

    2015-01-01

    The theory of motivated information management (TMIM) provides one framework to examine information-seeking behaviors, especially in conversations involving sensitive or difficult information such as preferences for end-of-life (EOL) care. The spouse plays a significant role in decision making surrounding EOL care. Consequently, individuals need information about spouses' EOL preferences in order to ensure carrying out those desires. Our findings support the value of TMIM as a framework to understand factors that influence couples' EOL care information-seeking behaviors. In support of the theory, we provide factors that influence the initiation or avoidance of EOL conversations between spouses.

  9. Physician-perceived contradictions in end-of-life communication: toward a self-report measurement scale.

    PubMed

    Amati, Rebecca; Hannawa, Annegret F

    2015-01-01

    Communication is undoubtedly a critical element of competent end-of-life care. However, physicians commonly lack communication skills in this particular care context. Theoretically grounded, evidence-based guidelines are needed to enhance physicians' communication with patients and their families in this important time of their lives. To address this need, this study tests and validates a Contradictions in End-of-Life Communication (CEOLC) scale, which disentangles the relational contradictions physicians commonly experience when communicating with end-of-life patients. Exploratory factors analysis confirmed the presence of eight physician-perceived dialectical tensions, reflecting three latent factors of (1) integration, (2) expression, and (3) dominance. Furthermore, a number of significant intercultural differences were found in cross-cultural comparisons of the scale in U.S., Swiss, and Italian physician samples. Thus, this investigation introduces a heuristic assessment tool that aids a better understanding of the dialectical contradictions physicians experience in their interactions with end-of-life patients. The CEOLC scale can be used to gather empirical evidence that may eventually support the development of evidence-based guidelines and skills training toward improved end-of-life care.

  10. Physician-perceived contradictions in end-of-life communication: toward a self-report measurement scale.

    PubMed

    Amati, Rebecca; Hannawa, Annegret F

    2015-01-01

    Communication is undoubtedly a critical element of competent end-of-life care. However, physicians commonly lack communication skills in this particular care context. Theoretically grounded, evidence-based guidelines are needed to enhance physicians' communication with patients and their families in this important time of their lives. To address this need, this study tests and validates a Contradictions in End-of-Life Communication (CEOLC) scale, which disentangles the relational contradictions physicians commonly experience when communicating with end-of-life patients. Exploratory factors analysis confirmed the presence of eight physician-perceived dialectical tensions, reflecting three latent factors of (1) integration, (2) expression, and (3) dominance. Furthermore, a number of significant intercultural differences were found in cross-cultural comparisons of the scale in U.S., Swiss, and Italian physician samples. Thus, this investigation introduces a heuristic assessment tool that aids a better understanding of the dialectical contradictions physicians experience in their interactions with end-of-life patients. The CEOLC scale can be used to gather empirical evidence that may eventually support the development of evidence-based guidelines and skills training toward improved end-of-life care. PMID:24911593

  11. Research participation by older adults at end of life: barriers and solutions.

    PubMed

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2009-07-01

    The purpose of this article is to elaborate on barriers to research participation by older adults at end of life. We focus on the hospice setting and classify barriers to research participation into six domains: societal attitudes toward death, research procedures, health care organizations, agency staff, patients' families and caregivers, and patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, and infringements on patient self-determination, as well as potential solutions to these research challenges. Our observation of the complex palliative context includes the realization that a singular change will not have large enough impact on participation. We conclude that, along with the responsibility to expand the research base addressing the needs of dying individuals, there is also a need to understand the challenges of implementing research projects with older adults at end of life. PMID:20078006

  12. End of Life Operations for LEO and GEO Satellites: 30 Years of Continuous Improvement

    NASA Astrophysics Data System (ADS)

    Fremeaux, Claire; Moussi, Aurelie; Vintenat, Lionel; Moulin, Michel

    2013-08-01

    CNES is celebrating in 2013 its 40th year of satellites operations with nearly 40 satellites cared for from Symphony 1 (1973) to Pleiades 1B (2012). Half of them reached its end of mission. Although they were not designed for it, CNES imagined, prepared and executed end-of life operations for geostationary and low earth orbit satellites, in accordance with its strong involvement at international level in favour of space activity sustainability and space debris mitigation. With increasing experience, efficiency and completeness of operations have strongly improved: optimization of resources, precise orbit and eccentricity management, collision risk concern, controlled fluidic and electric passivation, concern for degraded or emergency cases… This paper presents the evolution and improvement of end of life operations handled by CNES for 30 years, with a highlight on the last evolutions in the whole process since the French Space Act came into force.

  13. Research Participation by Older Adults at the End-of-Life: Barriers and Solutions

    PubMed Central

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2013-01-01

    The purpose of this paper is to elaborate upon barriers to research participation by older adults at end-of-life. We focus on the hospice setting and classify barriers to research participation into six domains:1) societal attitudes towards death; 2) research procedures; 3) health care organizations; 4) agency staff; 5) patients’ families and caregivers; and 6) patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, infringements upon patient self-determination, as well as, potential solutions to these research challenges. Our observation of the complex palliative context included the realization that a singular change would not have large enough impact. We concluded that simultaneous with the need to expand the research base addressing the needs of dying persons is a need to understand the challenges of implementing research projects with older persons at end-of-life. PMID:20078006

  14. 76 FR 47596 - Notice of Scientific Summit; The Science of Compassion-Future Directions in End-of-Life and...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-08-05

    ... improve the quality of life for those with life-limiting conditions through increased use of evidence...--Future Directions in End-of-Life and Palliative Care SUMMARY: Notice is hereby given that the National...-Life and Palliative Care.'' The summit is cosponsored by the NIH Office of Rare Diseases Research,...

  15. Can the NICE "end-of-life premium" be given a coherent ethical justification?

    PubMed

    Cookson, Richard

    2013-12-01

    In 2009 the UK National Institute for Health and Clinical Excellence (NICE) announced that its health technology appraisal committees would henceforth give special additional weight to health gains from life-extending end-of-life treatments. This was a response to mounting concern from NICE's stakeholders that effective new drugs for end-stage cancer often fail NICE's standard test of cost effectiveness. This change of policy may be justifiable on procedural grounds as the result of a democratic political process responding to stakeholder concerns. However, according to the "accountability for reasonableness" framework proposed by the philosopher Norman Daniels and endorsed by NICE, there also needs to be transparency about the substantive ethical grounds for public health care resource allocation decisions. In that spirit, I analyze eleven potentially relevant justifications for the NICE "end-of-life premium," drawn from the economics and philosophy literature: (1) rule of rescue, (2) fair chances, (3) ex post willingness to pay, (4) caring externality, (5) financial protection, (6) symbolic value, (7) diminishing marginal value of future life years, (8) concentration of benefits, (9) dread, (10) time to set your affairs in order, and (11) severity of illness. I conclude that none of them yields a coherent ethical justification for the NICE end-of-life premium.

  16. Psychosocial issues in end-of life care.

    PubMed

    Shubha, R

    2007-08-01

    Interest in aging and dying has increased substantially, in large part because of recent biomedical advances, the shift from a sacred to a secular conception of death, and the death awareness movement. The importance of mental health professionals in helping people through the aging and dying process is now more widely recognized. In addition, because societies are becoming increasingly multicultural, a greater need exists for appreciation of the cultural aspects involved. This article discusses the various psychosocial factors involved in aging and dying. It also touches on cultural factors that mental health and nursing professionals should be aware of to remain in tune with the changing times and better serve their patients. PMID:17848041

  17. [End of life in neonatology: palliative care integration].

    PubMed

    Soares, Célia; Rodrigues, Manuela; Rocha, Gustavo; Martins, Angelina; Guimarães, Hercília

    2013-01-01

    Introdução: A limitação terapêutica e a implementação dos cuidados paliativos em Neonatologia revestem-se de extrema relevância na atualidade e são já uma realidade com tendência crescente em vários países. Não obstante, em Portugal, os estudos, recomendações e protocolos oficiais no que diz respeito às questões em fim de vida são ainda escassos.Material e Métodos: Analisamos retrospetivamente os processos clínicos dos recém-nascidos falecidos na Unidade de Cuidados Intensivos do Centro Hospitalar de São João no período de 2010 a 2012 e comparamos os resultados com os obtidos num estudo realizado na mesma Unidade correspondente aos períodos 1992-1995 e 2002-2005.Resultados: Na população estudada as anomalias congénitas foram a causa de morte em 57,1% casos, a prematuridade extrema em 18,4% casos e a infeção em 16,3%. No que refere ao ‘modo de morrer’, a paragem cardiorrespiratória irreversível às manobras de reanimação observou-se em 57,1% casos; 20,4% faleceram após abstenção de tratamento e 22,4% após suspensão de tratamento. Verificaram-se diferenças significativas para o ‘modo de morrer’ e as variáveis tempo de internamento e presença dos pais no momento da morte. Em 28,6% casos houve registo de tomada de decisão pela limitação terapêutica e adoção de cuidados paliativos e em 16,3% decisão de não reanimar. Para as duas últimas registou-se um aumento ao longo das três décadas analisadas. Também se registou uma tendência crescente para a utilização de escala de avaliação de dor neonatal, opióides e sedativos, presença parental no momento da morte, reuniões entre pais e neonatologistas, reuniões interdisciplinares e apoio psicológico aos pais.Conclusão: Este estudo revela uma tendência crescente para a integração de medidas de limitação terapêutica e de cuidados paliativos na UCIN estudada. Contudo, há ainda muito a desenvolver, nomeadamente no que refere à investigação, formação dos profissionais e debate ético.

  18. End-of-Life Care for People Who Have Cancer

    MedlinePlus

    ... people often have episodes of confusion or waking dreams. They may get confused about time, place, and ... They can let them share their visions and dreams, not trying to talk them out of what ...

  19. Culturally Diverse Communities and End-of-Life Care

    MedlinePlus

    ... resuscitation, feeding tubes) and preferences: to know a terminal diagnosis; to die at home, in the hospital, ... study, Latinos differed in wanting to know a terminal diagnosis (Sullivan, 2001). Hospices serve primarily Whites (83%), ...

  20. Zinc-catalyzed depolymerization of end-of-life polysiloxanes.

    PubMed

    Enthaler, Stephan

    2014-03-01

    Polymers occupy an important role in our current society. Besides their great success, an issue is the accumulation of huge amounts of end-of-life polymers. Currently, the waste management is based primarily on landfills, thermal recycling, and downcycling. Notably, only a small portion of end-of-life materials is recycled by depolymerization, which refers to the creation of synthetic precursors that can be polymerized to new polymers to close the cycle. Widely used polymers in modern times are silicones (polysiloxanes), the intrinsic properties of which make their depolymerization demanding; only a few high-temperature or less environmentally friendly processes have been reported. In this regard, we have established an efficient low-temperature protocol for the depolymerization of silicones with benzoyl fluoride in the presence of cheap zinc salts as precatalysts to yield defined products. Notably, the products can be useful synthetic precursors for the preparation of new polymers, so that an overall recycling process is feasible. PMID:24501107

  1. Typology of end-of-life priorities in Saudi females: averaging analysis and Q-methodology

    PubMed Central

    Hammami, Muhammad M; Hammami, Safa; Amer, Hala A; Khodr, Nesrine A

    2016-01-01

    Background Understanding culture-and sex-related end-of-life preferences is essential to provide quality end-of-life care. We have previously explored end-of-life choices in Saudi males and found important culture-related differences and that Q-methodology is useful in identifying intraculture, opinion-based groups. Here, we explore Saudi females’ end-of-life choices. Methods A volunteer sample of 68 females rank-ordered 47 opinion statements on end-of-life issues into a nine-category symmetrical distribution. The ranking scores of the statements were analyzed by averaging analysis and Q-methodology. Results The mean age of the females in the sample was 30.3 years (range, 19–55 years). Among them, 51% reported average religiosity, 78% reported very good health, 79% reported very good life quality, and 100% reported high-school education or more. The extreme five overall priorities were to be able to say the statement of faith, be at peace with God, die without having the body exposed, maintain dignity, and resolve all conflicts. The extreme five overall dis-priorities were to die in the hospital, die well dressed, be informed about impending death by family/friends rather than doctor, die at peak of life, and not know if one has a fatal illness. Q-methodology identified five opinion-based groups with qualitatively different characteristics: “physical and emotional privacy concerned, family caring” (younger, lower religiosity), “whole person” (higher religiosity), “pain and informational privacy concerned” (lower life quality), “decisional privacy concerned” (older, higher life quality), and “life quantity concerned, family dependent” (high life quality, low life satisfaction). Out of the extreme 14 priorities/dis-priorities for each group, 21%–50% were not represented among the extreme 20 priorities/dis-priorities for the entire sample. Conclusion Consistent with the previously reported findings in Saudi males, transcendence and dying in

  2. Teaching end-of-life issues in US medical schools: 1975 to 2005.

    PubMed

    Dickinson, George E

    2006-01-01

    This study examined medical school offerings on end-of-life issues between 1975 and 2005. Seven national surveys of US medical schools were conducted in 1975, 1980, 1985, 1990, 1995, 2000, and 2005 (response rates in percentages of 95, 96, 90, 90, 93, 92, and 81, respectively). Results revealed that between 1975 and 2005, the overall offerings in death and dying increased so that 100% of US medical schools, beginning in 2000, offered something on death and dying. A multidisciplinary-team approach continued over the 30-year period. Palliative care is offered in 94% of US medical schools, to some extent, and about a fourth of the schools offer students an opportunity to have a continuing relationship for several weeks with a terminally ill patient. Numerous end-of-life topics are currently covered in the curriculum. This increased attention to end-of-life issues in medical schools should enhance each medical student's relationship with terminally ill patients and their families.

  3. Identifying changes in the support networks of end-of-life carers using social network analysis.

    PubMed

    Leonard, Rosemary; Horsfall, Debbie; Noonan, Kerrie

    2015-06-01

    End-of-life caring is often associated with reduced social networks for both the dying person and for the carer. However, those adopting a community participation and development approach, see the potential for the expansion and strengthening of networks. This paper uses Knox, Savage and Harvey's definitions of three generations social network analysis to analyse the caring networks of people with a terminal illness who are being cared for at home and identifies changes in these caring networks that occurred over the period of caring. Participatory network mapping of initial and current networks was used in nine focus groups. The analysis used key concepts from social network analysis (size, density, transitivity, betweenness and local clustering) together with qualitative analyses of the group's reflections on the maps. The results showed an increase in the size of the networks and that ties between the original members of the network strengthened. The qualitative data revealed the importance between core and peripheral network members and the diverse contributions of the network members. The research supports the value of third generation social network analysis and the potential for end-of-life caring to build social capital.

  4. Choice and compassion at the end of life: A critical analysis of recent English policy discourse.

    PubMed

    Borgstrom, Erica; Walter, Tony

    2015-07-01

    End of life care in England has recently been framed by two very different discourses. One (connected to advance care planning) promotes personal choice, the other promotes compassionate care; both are prominent in professional, policy and media settings. The article outlines the history of who promoted each discourse from 2008 to early 2015, when, why and how and this was done. Each discourse is then critically analysed from a standpoint that takes account of bodily decline, structural constraints, and human relationality. We focus on the biggest group of those nearing the end of their life, namely frail very old people suffering multiple conditions. In their care within contemporary healthcare organisations, choice becomes a tick box and compassion a commodity. Informed choice, whether at the end of life or in advance of it, does not guarantee the death the person wants, especially for those dying of conditions other than cancer and in the absence of universally available skilled and compassionate care. Enabling healthcare staff to provide compassionate, relational care, however, implies reversing the philosophical, political and financial direction of healthcare in the UK and most other Anglophone countries. PMID:25989003

  5. End of Life and Life After Death - Issues to be Addressed.

    PubMed

    Sridhar, Poojar; Renuka, Pramod Kallur Parameshwar; Bonanthaya, Ravikiran

    2012-09-01

    Being an Oncologist, I have seen many patients suffering from cancer. It pains a lot looking at them fighting the battle of life, though knowing that they would lose miserably and surrender meekly as majority of the patients report to the hospital at an advanced stage of disease and only palliative care may be the option. There is an urgent need to create - Cancer Awareness in the villages and also about the end of life care in all terminally ill patients. 20 patients in the terminal phase were questioned regarding end of life care. The common questions they asked are, why has God punished me like this? Why me on earth? Should I die so early? Why should I leave my near and dear ones and go far away, from the point of no return? Do I ever see them again? With deep sorrow and sigh, they suffer till the last breath, having the feeling of insecurity as what would happen to their dear ones. In the terminal phase, the patients wishes must be respected and their needs must be fulfilled. The health care professionals should plan an appropriate care for each patient. Most of them feel that the best place to be in end of life is the home. Research has shown that Hospice care may improve the quality of life of a patient who is dying and of the patient's family. Communication about end of life care and decision making during the final moments of a person's life are very important. The patients suffering are mainly due to the physical, psychological, social and spiritual issues. Death of a terminally ill patient should never be a sudden loss. All healthcare professionals, Social workers and Non-Governmental Organisations must install the life after death of the person, who has struggled for every breath and assure that he/she shall rest in peace and shall smile seeing their near and dear ones living with dignity and pride in the society. Ultimately, the patient must have dignity in dying.

  6. Institutional disposition and management of end-of-life electronics.

    PubMed

    Babbitt, Callie W; Williams, Eric; Kahhat, Ramzy

    2011-06-15

    Institutions both public and private face a challenge to develop policies to manage purchase, use, and disposal of electronics. Environmental considerations play an increasing role in addition to traditional factors of cost, performance and security. Characterizing current disposition practices for end-of-life electronics is a key step in developing policies that prevent negative environmental and health impacts while maximizing potential for positive social and economic benefits though reuse. To provide a baseline, we develop the first characterization of quantity, value, disposition, and flows of end-of-life electronics at a major U.S. educational institution. Results of the empirical study indicate that most end-of-first-life electronics were resold through public auction to individuals and small companies who refurbish working equipment for resale or sell unusable products for reclamation of scrap metal. Desktop and laptop computers sold for refurbishing and resale averaged U.S. $20-100 per unit, with computers sold directly to individuals for reuse reaching $250-350 per unit. This detailed assessment was coupled with a benchmarking survey of end-of-life electronics management practices at other U.S. universities. Survey results indicate that while auctions are still commonplace, an increasing number of institutions are responding to environmental concerns by creating partnerships with local recycling and resale entities and mandating domestic recycling. We use the analyses of current disposition practices as input to discuss institutional strategies for managing electronics. One key issue is the tension between benefits of used equipment sales, in terms of income for the institution and increased reuse for society, and the environmental risks because of unknown downstream practices. PMID:21553865

  7. Death Is Certain, Strategy Isn't: Assessing the Robert Wood Johnson Foundation's End-of-Life Grant Making

    ERIC Educational Resources Information Center

    Patrizi, Patricia A.

    2010-01-01

    The author discusses an assessment of the Robert Wood Johnson Foundation's work over a 20-year period to improve end-of-life care in America. The case illustrates the evolution of the strategy from one focused on a multiyear randomized control trial of a series of hospital-based interventions that produced findings of "no effects" into several…

  8. End-of-Life Decision Making: A Preliminary Outline for Preparing Counselors to Work with Terminally Ill Individuals

    ERIC Educational Resources Information Center

    Duba, Jill D.; Magenta, Mary

    2008-01-01

    End-of-life care is continuously becoming an issue of paramount importance given an increase in medical advances, the aging of the population, and the movement toward contributing toward a quality of life among terminally ill patients. However, there is a dearth in literature related to this topic specifically in terms of preparing counselors to…

  9. The influence of end-of-life education on attitudes of nursing students.

    PubMed

    Barrere, Cynthia C; Durkin, Anne; LaCoursiere, Sheryl

    2008-01-01

    Palliative care is an important aspect of nursing when comfort and quality of life are the patient goals. The End-of-Life Nursing Education Consortium (ELNEC) developed a comprehensive program of teaching care of the dying to nurses and nursing students. This pretest-posttest study evaluated the influence of the integration of the ELNEC curriculum into a baccalaureate nursing program on students' attitudes toward care of the dying. The Frommelt Attitudes toward Care of the Dying Scale for nurses (FATCOD) was administered to traditional and accelerated baccalaureate students before and after exposure to a nursing curriculum that integrated essential ELNEC elements. Multiple regression analyses indicated that no previous experience with death and an age of 18-22 accounted for the most variance in attitude change. The findings suggest that integrating the ELNEC curriculum throughout a baccalaureate program positively affects the attitudes of nursing students toward the care of patients who are dying.

  10. Assessing the end-of-life impacts of buildings.

    PubMed

    Vieira, Pedro Santos; Horvath, Arpad

    2008-07-01

    This paper builds on previous research on end of life of products by synthesizing some of the theories proposed in the literature and presenting a method for environmental decision-making related to buildings. This is achieved through different solutions, but most significantly through the use of hybrid life-cycle assessment and the definition of allocation boundaries in a way that decreases the uncertainty associated with technologicalforecasting. Results show that there is no significant difference between the results of two major end-of-life assessment approaches (attributional and consequential), and that the choice between the use of one or the other for buildings may not be a critical decision. Assessing the impacts of recycling polices requires accounting for product substitutions, market analysis, and the full supply chain impacts of the recycling chains. Increasing the recycling of concrete from deconstructed buildings from the current 27% rate to 50% could yield a 2-3% (2.7-5.6 million metric tons of CO2 equivalents) reduction in buildings' greenhouse gas emissions, or the equivalent of removing 408,000-847,000 typical cars from U.S. roads.

  11. Assessing the end-of-life impacts of buildings.

    PubMed

    Vieira, Pedro Santos; Horvath, Arpad

    2008-07-01

    This paper builds on previous research on end of life of products by synthesizing some of the theories proposed in the literature and presenting a method for environmental decision-making related to buildings. This is achieved through different solutions, but most significantly through the use of hybrid life-cycle assessment and the definition of allocation boundaries in a way that decreases the uncertainty associated with technologicalforecasting. Results show that there is no significant difference between the results of two major end-of-life assessment approaches (attributional and consequential), and that the choice between the use of one or the other for buildings may not be a critical decision. Assessing the impacts of recycling polices requires accounting for product substitutions, market analysis, and the full supply chain impacts of the recycling chains. Increasing the recycling of concrete from deconstructed buildings from the current 27% rate to 50% could yield a 2-3% (2.7-5.6 million metric tons of CO2 equivalents) reduction in buildings' greenhouse gas emissions, or the equivalent of removing 408,000-847,000 typical cars from U.S. roads. PMID:18677988

  12. Narrative autonomy: three literary models of healthcare in the end of life.

    PubMed

    Casado da Rocha, Antonio

    2014-04-01

    This article proposes a concept of narrative autonomy to supplement existing accounts in healthcare ethics. This is done by means of a comparison between three end-of-life scenarios: Tolstoy's The Death of Ivan Ilyich and two related contemporary stories by Lorrie Moore and Bernhard Schlink, which explore some problems arising when extremely individualistic notions of patient autonomy are put into practice. It is argued that the best model for palliative care is a cooperative one in which patient autonomy is understood as essentially social, and that involves decisional, executive, informational, and narrative dimensions. PMID:24534741

  13. Narrative autonomy: three literary models of healthcare in the end of life.

    PubMed

    Casado da Rocha, Antonio

    2014-04-01

    This article proposes a concept of narrative autonomy to supplement existing accounts in healthcare ethics. This is done by means of a comparison between three end-of-life scenarios: Tolstoy's The Death of Ivan Ilyich and two related contemporary stories by Lorrie Moore and Bernhard Schlink, which explore some problems arising when extremely individualistic notions of patient autonomy are put into practice. It is argued that the best model for palliative care is a cooperative one in which patient autonomy is understood as essentially social, and that involves decisional, executive, informational, and narrative dimensions.

  14. Technology survey of nursing programs: implications for electronic end-of-life teaching tool development.

    PubMed

    Wells, Marjorie J; Wilkie, Diana J; Brown, Marie-Annette; Corless, Inge B; Farber, Stuart J; Judge, M Kay M; Shannon, Sarah E

    2003-01-01

    From an online survey of current technological capabilities of US undergraduate nursing programs, we found almost universal use of Microsoft Windows-based computers and Microsoft Office Suite software. Netscape and Microsoft Internet Explorer were the most popular browsers for Internet access. The survey also assessed faculty preferences for end-of-life care teaching materials and found that nurse educators preferred simple easy-to-use tools provided on CD-ROM or the Internet, with instructions provided via CD-ROM, the Internet, and demonstration workshops. Our findings have numerous implications for the development of electronic teaching materials for nursing.

  15. Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families.

    PubMed

    Winzelberg, Gary S; Hanson, Laura C; Tulsky, James A

    2005-06-01

    Efforts to improve end-of-life decision-making quality have emphasized the principle of individual autonomy to better ensure that patients receive care consistent with their preferences. This principle has primarily been defined through court decisions during the past 3 decades as a patient's right to refuse medical technologies and avoid life-prolonging treatments. However, autonomy as traditionally defined only serves a small segment of dying patients. Patients might not value autonomy or consider autonomy important but define it differently than decision-making self-determination. Some patients also think in terms of their care goals rather than individual treatment preferences. Patients' functional and cognitive abilities, age, racial and ethnic backgrounds, and desire to avoid burdening loved ones may influence attitudes and definitions regarding autonomy. To improve end-of-life decision-making for an increasingly multicultural and aging population, the following priorities should be set: (1) Increase the flexibility of advance care planning and decision-making strategies used with capable patients to encompass diverse perceptions of autonomy; and (2) Improve communication between physicians and patients' families when patients lack decision-making capacity to facilitate decision-making and address families' emotional burdens. The goal of these priorities is to promote understanding of patients' and families' decision-making preferences and goals and to minimize decision-making burdens on families.

  16. Valuing health at the end of life: a stated preference discrete choice experiment.

    PubMed

    Shah, Koonal K; Tsuchiya, Aki; Wailoo, Allan J

    2015-01-01

    A source of debate in the field of health care priority setting is whether health gains should be weighted differently for different groups of patients. The debate has recently focused on the relative value of life extensions for patients with short life expectancy. However, few studies have examined empirically whether society is prepared to fund life-extending end-of-life treatments that would not meet the reimbursement criteria used for other treatments. A web-based discrete choice experiment was conducted in 2012 using a sample of 3969 members of the general public in England and Wales. The study design was informed by the National Institute for Health and Care Excellence's supplementary policy for the appraisal of life-extending end-of-life treatments. The choice tasks involved asking respondents which of two hypothetical patients they would prefer to treat, assuming that the health service has enough funds to treat only one of them. Conditional logit regressions were used for modelling. Choices about which patient to treat were influenced more by the sizes of treatment gains than by patients' life expectancy without treatment. Some respondents appear to support a health-maximisation type objective throughout, whilst a small minority always seek to treat those who are worse off without treatment. The majority of respondents, however, seem to advocate a mixture of the two approaches. Overall, we find little evidence that members of the general public prefer to give higher priority to life-extending end-of-life treatments than to other types of treatment. When asked to make decisions about the treatment of hypothetical patients with relatively short life expectancies, most people's choices are driven by the size of the health gains offered by treatment.

  17. Abandonment at the end of life from patient and clinician perspectives

    PubMed Central

    Back, Anthony L; Young, Jessica P; McCown, Ellen; Engelberg, Ruth A; Vig, Elizabeth K; Reinke, Lynn F; Wenrich, Marjorie D; McGrath, Barbara B; Curtis, J Randall

    2010-01-01

    Background Surveys and anecdotes suggest that patients and family members sometimes feel abandoned by their physicians at the transition to end-of-life care. To our knowledge, no prior studies describe abandonment prospectively. Methods We conducted a longitudinal, qualitative study of patients, family caregivers, physicians and nurses using a community-based sample. Using a purposive recruitment strategy, we identified 31 physicians, who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease (COPD), 36 family caregivers, and 25 nurses. Eligible patients met the prognostic criterion that their physician ‘would not be surprised’ if death occurred within a year. Qualitative semi-structured interviews were performed at enrollment, 4–6 months and 12 months, and were audiotaped, transcribed and coded by an interdisciplinary team. When asked to talk about hope and prognostic information, participants spontaneously raised concerns about abandonment, and we incorporated this topic into our interview guide. Results Two themes were identified: (1) before death, abandonment worries related to loss of continuity between patient and physician; (2) at the time of death or after, feelings of abandonment resulted from lack of closure for patients and families. Physicians reported lack of closure but did not discuss this as abandonment. Conclusion The professional value of nonabandonment at the end of life consists of two different elements: (1) providing continuity, of both expertise and the patient-clinician relationship; and (2) facilitating closure of an important therapeutic relationship. Framing this professional value as continuity and closure could promote the development of interventions to improve this aspect of end-of-life care. PMID:19273777

  18. End-of-life decision-making in India.

    PubMed

    Freckelton, Ian

    2014-09-01

    The extraordinary circumstances and the tragic life of Aruna Shanbaug, together with the landmark Supreme Court of India decision in Shanbaug v Union of India (2011) 4 SCC 454, have provided a fillip and focus to debate within India about end-of-life decision-making. This extends to passive euthanasia, decision-making about withdrawal of nutrition, hydration and medical treatment from persons in a permanent vegetative or quasi-vegetative state, the role of the courts in such matters, the risks of corruption and misconduct, the criminal status of attempted suicide, and even the contentious issue of physician-assisted active euthanasia. The debates have been promoted further by important reports of the Law Commission of India. This editorial reviews the current state of the law and debate about such issues in India.

  19. Is the doctrine of double effect irrelevant in end-of-life decision making?

    PubMed

    Allmark, Peter; Cobb, Mark; Liddle, B Jane; Tod, Angela Mary

    2010-07-01

    In this paper, we consider three arguments for the irrelevance of the doctrine of double effect in end-of-life decision making. The third argument is our own and, to that extent, we seek to defend it. The first argument is that end-of-life decisions do not in fact shorten lives and that therefore there is no need for the doctrine in justification of these decisions. We reject this argument; some end-of-life decisions clearly shorten lives. The second is that the doctrine of double effect is not recognized in UK law (and similar jurisdictions); therefore, clinicians cannot use it as the basis for justification of their decisions. Against this we suggest that while the doctrine might have dubious legal grounds, it could be of relevance in some ways, e.g. in marking the boundary between acceptable and unacceptable practice in relation to the clinician's duty to relieve pain and suffering. The third is that the doctrine is irrelevant because it requires there to be a bad effect that needs justification. This is not the case in end-of-life care for patients diagnosed as dying. Here, bringing about a satisfactory dying process for a patient is a good effect, not a bad one. What matters is that patients die without pain and suffering. This marks a crucial departure from the double-effect doctrine; if the patient's death is not a bad effect then the doctrine is clearly irrelevant. A diagnosis of dying allows clinicians to focus on good dying and not to worry about whether their intervention affects the time of death. For a patient diagnosed as dying, time of death is rarely important. In our conclusion we suggest that acceptance of our argument might be problematic for opponents of physician-assisted death. We suggest one way in which these opponents might argue for a distinction between such practice and palliative care; this relies on the double-effect doctrine's distinction between foresight and intention.

  20. End-of-life and brain death in acute coma and disorders of consciousness.

    PubMed

    Greer, David M; Curiale, Gioacchino G

    2013-04-01

    Consulting neurologists are often asked to evaluate patients in acute nontraumatic coma. The authors review prognostication of functional outcomes, determining brain death, and managing end-of-life care. Prognostication of outcome after cardiac arrest in comatose patients is a frequently encountered scenario with high-stakes implications. However, current guidelines are limited by a failure to address the use of therapeutic hypothermia and thus may lead to overly pessimistic outcome prediction. Pupillary light responses and corneal reflexes remain highly predictive clinical signs of a poor prognosis. Motor responses have a high false-positive rate for predicting a poor outcome, especially in patients treated with therapeutic hypothermia. Ancillary testing with electroencephalography, somatosensory evoked potentials, serum neuron-specific enolase, and neuroimaging is often useful in predicting outcomes. Brain death is a clinical condition of irreversible coma of known cause with absent brainstem reflexes and apnea. An understanding of the value of confirmatory testing and the potential for confounding factors is essential in making a correct diagnosis. As coma carries a high mortality rate, neurologists must be capable of guiding goals of care, discussing end-of-life issues, and understanding organ-procurement procedures. PMID:23888399

  1. Predictive Modeling for End-of-Life Pain Outcome using Electronic Health Records

    PubMed Central

    Lodhi, Muhammad K.; Stifter, Janet; Yao, Yingwei; Ansari, Rashid; Kee-nan, Gail M.; Wilkie, Diana J.; Khokhar, Ashfaq A.

    2016-01-01

    Electronic health record (EHR) systems are being widely used in the healthcare industry nowadays, mostly for monitoring the progress of the patients. EHR data analysis has become a big data problem as data is growing rapidly. Using a nursing EHR system, we built predictive models for determining what factors influence pain in end-of-life (EOL) patients. Utilizing different modeling techniques, we developed coarse-grained and fine-grained models to predict patient pain outcomes. The coarse-grained models help predict the outcome at the end of each hospitalization, whereas fine-grained models help predict the outcome at the end of each shift, thus providing a trajectory of predicted outcomes over the entire hospitalization. These models can help in determining effective treatments for individuals and groups of patients and support standardization of care where appropriate. Using these models may also lower the cost and increase the quality of end-of-life care. Results from these techniques show significantly accurate predictions. PMID:27500287

  2. Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning.

    PubMed

    Thorne, Sally; Roberts, Della; Sawatzky, Richard

    2016-01-01

    An increasing appreciation for the burden that chronic conditions represent for people and for societies has triggered an evolving body of popular and professional conceptualizations of the nature of the chronic disease challenge. In this discussion article, we trace the trajectory of thinking about chronic illness care, surfacing underlying assumptions and drivers that have shaped current dominant models of service delivery. We note significant gaps in these conceptualizations, especially with respect to the reality that many chronic conditions are life limiting. Contrasting chronic disease theorizing with the conversations that have arisen around end-of-life care for other kinds of health conditions, we argue for a shift in our thinking to accommodate the implications of life limitation in our service delivery planning. We see significant leadership potential in optimizing the role nurses can play across the chronic disease trajectory by integrating the healthy optimism of self-care management with the profound compassion of a person-centered palliative approach.

  3. Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning.

    PubMed

    Thorne, Sally; Roberts, Della; Sawatzky, Richard

    2016-01-01

    An increasing appreciation for the burden that chronic conditions represent for people and for societies has triggered an evolving body of popular and professional conceptualizations of the nature of the chronic disease challenge. In this discussion article, we trace the trajectory of thinking about chronic illness care, surfacing underlying assumptions and drivers that have shaped current dominant models of service delivery. We note significant gaps in these conceptualizations, especially with respect to the reality that many chronic conditions are life limiting. Contrasting chronic disease theorizing with the conversations that have arisen around end-of-life care for other kinds of health conditions, we argue for a shift in our thinking to accommodate the implications of life limitation in our service delivery planning. We see significant leadership potential in optimizing the role nurses can play across the chronic disease trajectory by integrating the healthy optimism of self-care management with the profound compassion of a person-centered palliative approach. PMID:27333631

  4. Nursing home social worker skills and end-of-life planning.

    PubMed

    Lacey, Debra

    2005-01-01

    Little empirical information exists on nursing home social worker's involvement in advance care planning and end-of-life decision- making with nursing home residents and their family members. The purpose of this exploratory study was twofold: (1) to identify the frequency of skills associated with advance care planning that social workers use, and (2) to explore the factor structure of the scale used in the study. Results from 138 nursing home social worker respondents from New York State showed high frequency of advance directive discussions, care planning, and conflict resolution with families. The instrument factors clustered around administrative duties, and grief issues. There was substantial interest in continuing education in grief counseling with families. PMID:15911502

  5. The role of chemotherapy at the end of life: "when is enough, enough?".

    PubMed

    Harrington, Sarah Elizabeth; Smith, Thomas J

    2008-06-11

    Patients face difficult decisions about chemotherapy near the end of life. Such treatment might prolong survival or reduce symptoms but cause adverse effects, prevent the patient from engaging in meaningful life review and preparing for death, and preclude entry into hospice. Palliative care and oncology clinicians should be logical partners in caring for patients with serious cancers for which symptom control, medically appropriate goal setting, and communication are paramount, but some studies have shown limited cooperation. We illustrate how clinicians involved in palliative care and oncology can more effectively work together with the story of Mr L, a previously healthy 56-year-old man, who wanted to survive his lung cancer at all costs. He lived 14 months with 3 types of chemotherapy, received chemotherapy just 6 days before his death, and resisted entering hospice until his prognosis and options were explicitly communicated. Approaches to communication about prognosis and treatment options and questions that patients may want to ask are discussed.

  6. Social Work Practice with LGBT Elders at End of Life: Developing Practice Evaluation and Clinical Skills Through a Cultural Perspective.

    PubMed

    Arthur, Darren P

    2015-01-01

    This article focuses on culturally sensitive clinical issues related to best practices with lesbian, gay, bisexual, transgender (LGBT) elder patients at end-of-life (EOL) at key points in the therapeutic relationship. Vital concepts, including practice evaluation and clinical skills, are presented through a cultural and oncology lens. There is a paucity of LGBT research and literature as well as a shortfall of MSW graduate school education specific to social work palliative and end-of-life care (PELC) practice with LGBT elders. The content of this article is designed to be adapted and used as an educational tool for institutions, agencies, graduate programs, medical professions, social work, and students. Learning the unique elements of LGBT cultural history and their implications on EOL care can improve social work practice. This article provides an examination from assessment and engagement basics to advance care planning incorporating specific LGBT EOL issues. PMID:26380926

  7. Social Work Practice with LGBT Elders at End of Life: Developing Practice Evaluation and Clinical Skills Through a Cultural Perspective.

    PubMed

    Arthur, Darren P

    2015-01-01

    This article focuses on culturally sensitive clinical issues related to best practices with lesbian, gay, bisexual, transgender (LGBT) elder patients at end-of-life (EOL) at key points in the therapeutic relationship. Vital concepts, including practice evaluation and clinical skills, are presented through a cultural and oncology lens. There is a paucity of LGBT research and literature as well as a shortfall of MSW graduate school education specific to social work palliative and end-of-life care (PELC) practice with LGBT elders. The content of this article is designed to be adapted and used as an educational tool for institutions, agencies, graduate programs, medical professions, social work, and students. Learning the unique elements of LGBT cultural history and their implications on EOL care can improve social work practice. This article provides an examination from assessment and engagement basics to advance care planning incorporating specific LGBT EOL issues.

  8. “This is Our Last Stop”: Negotiating End of Life Transitions in Assisted Living

    PubMed Central

    Ball, Mary M.; Kemp, Candace L.; Hollingsworth, Carole; Perkins, Molly M.

    2014-01-01

    Where people die has important implications for end-of-life (EOL) care. Assisted living (AL) increasingly is becoming a site of EOL care and a place where people die. AL residents are moving in older and sicker and with more complex care needs, yet AL remains largely a non-medical care setting that subscribes to a social rather than medical model of care. The aims of this paper are to add to the limited knowledge of how EOL is perceived, experienced, and managed in AL and to learn how individual, facility, and community factors influence these perceptions and experiences. Using qualitative methods and a grounded theory approach to study eight diverse AL settings, we present a preliminary model for how EOL care transitions are negotiated in AL that depicts the range of multilevel intersecting factors that shape EOL processes and events in AL. Facilities developed what we refer to as an EOL presence, which varied across and within settings depending on multiple influences, including, notably, the dying trajectories and care arrangements of residents at EOL, the prevalence of death and dying in a facility, and the attitudes and responses of individuals and facilities towards EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on residents and staff. Our findings indicate that in the majority of cases, EOL care must be supported by collaborative arrangements of care partners and that hospice care is a critical component. PMID:24984903

  9. "This is our last stop": Negotiating end-of-life transitions in assisted living.

    PubMed

    Ball, Mary M; Kemp, Candace L; Hollingsworth, Carole; Perkins, Molly M

    2014-08-01

    Where people die has important implications for end-of-life (EOL) care. Assisted living (AL) increasingly is becoming a site of EOL care and a place where people die. AL residents are moving in older and sicker and with more complex care needs, yet AL remains largely a non-medical care setting that subscribes to a social rather than medical model of care. The aims of this paper are to add to the limited knowledge of how EOL is perceived, experienced, and managed in AL and to learn how individual, facility, and community factors influence these perceptions and experiences. Using qualitative methods and a grounded theory approach to study eight diverse AL settings, we present a preliminary model for how EOL care transitions are negotiated in AL that depicts the range of multilevel intersecting factors that shape EOL processes and events in AL. Facilities developed what we refer to as an EOL presence, which varied across and within settings depending on multiple influences, including, notably, the dying trajectories and care arrangements of residents at EOL, the prevalence of death and dying in a facility, and the attitudes and responses of individuals and facilities toward EOL processes and events, including how deaths were communicated and formally acknowledged and the impact of death and dying on the residents and staff. Our findings indicate that in the majority of cases, EOL care must be supported by collaborative arrangements of care partners and that hospice care is a critical component.

  10. Information and Communication Needs of Parents in Infant End-of-Life: A Qualitative Study

    PubMed Central

    Sadeghi, Narges; Hasanpour, Marzieh; Heidarzadeh, Mohamad

    2016-01-01

    Background Hospitalization of a neonate in the neonatal intensive care unit (NICU) can be a stressful event for parents. They need specific information and communication to alleviate their stress, but these parental needs are not met by NICU staff. Exploration of these needs can help health professionals to provide better healthcare services. Objectives The purpose of this study was to explore the information and communication needs of families in neonatal end-of-life and bereavement in the NICU. Materials and Methods A qualitative content analysis method was used for this study. Data were collected through single semi-structured interviews with 24 participants. Sampling was conducted based on the purposive sampling method in five NICU environments in Iran. All interviews were taped and transcribed verbatim. Results Data analysis revealed two main themes: information and communication. For information, there were two subthemes (true information about the infant’s health and true information about the infant’s death), and communication needs also developed two subthemes (communication with healthcare professionals and communication with the infant before, during and after the infant’s death). Conclusions According to the results, parents need accurate information about the health and the death of their neonates in the NICU. They also need to communicate with healthcare professionals and their babies. Communication is regarded as a channel for obtaining information. Therefore, the healthcare team needs to address these families’ needs and attempt to fulfill their requirements in neonatal end-of-life and bereavement in the NICU. PMID:27621926

  11. SMART-1 end of life shallow regolith impact simulations

    NASA Astrophysics Data System (ADS)

    Burchell, M. J.; Cole, M. J.; Ramkissoon, N. K.; Wozniakiewicz, P. J.; Price, M. C.; Foing, B.

    2015-08-01

    The SMART-1 end-of-life impact with the lunar surface was simulated with impacts in a two stage light-gas gun onto inclined basalt targets with a shallow surface layer of sand. This simulated the probable impact site, where a loose regolith will have overlaid a well consolidated basaltic layer of rock. The impact angles used were at 5° and 10° from the horizontal. The impact speed was ~2 km s-1 and the projectiles were 2.03 mm diameter aluminum spheres. The sand depth was between approximately 0.8 and 1.8 times the projectile diameter, implying a loose lunar surface regolith of similar dimensions to the SMART-1 spacecraft. A crater in the basement rock itself was only observed in the impact at 10° incidence, and where the depth of loose surface material was less than the projectile diameter, in which case the basement rock also contained a small pit-like crater. In all cases, the projectile ricocheted away from the impact site at a shallow angle. This implies that at the SMART-1 impact site the crater will have a complicated structure, with exposed basement rock and some excavated rock displaced nearby, and the main spacecraft body itself will not be present at the main crater.

  12. End-of-life decision making is more than rational.

    PubMed

    Eliott, Jaklin A; Olver, Ian N

    2005-01-01

    Most medical models of end-of-life decision making by patients assume a rational autonomous adult obtaining and deliberating over information to arrive at some conclusion. If the patient is deemed incapable of this, family members are often nominated as substitutes, with assumptions that the family are united and rational. These are problematic assumptions. We interviewed 23 outpatients with cancer about the decision not to resuscitate a patient following cardiopulmonary arrest and examined their accounts of decision making using discourse analytical techniques. Our analysis suggests that participants access two different interpretative repertoires regarding the construct of persons, invoking a 'modernist' repertoire to assert the appropriateness of someone, a patient or family, making a decision, and a 'romanticist' repertoire when identifying either a patient or family as ineligible to make the decision. In determining the appropriateness of an individual to make decisions, participants informally apply 'Sanity' and 'Stability' tests, assessing both an inherent ability to reason (modernist repertoire) and the presence of emotion (romanticist repertoire) which might impact on the decision making process. Failure to pass the tests respectively excludes or excuses individuals from decision making. The absence of the romanticist repertoire in dominant models of patient decision making has ethical implications for policy makers and medical practitioners dealing with dying patients and their families.

  13. Review of End-of-Life Thermal Control Coating Performance

    NASA Technical Reports Server (NTRS)

    Jaworske, Donald A.; Kline, Sara E.

    2008-01-01

    White thermal control coatings capable of long term performance are needed for Fission Surface Power (FSP) where heat from a nuclear reactor placed on the surface of the Moon must be rejected to the environment. The threats to thermal control coating durability on the lunar surface are electrons, protons, and ultraviolet radiation. The anticipated damage to the coating is a gradual darkening over time. The increase in solar absorptance would, in essence, add a cyclic heat load to the radiator. The greater the darkening, the greater the added heat load. The cyclic heat load could ultimately impart a cyclic influence on FSP system performance. No significant change in emittance is anticipated. Optical properties degradation data were found in the open literature for the Z-93 series of thermal control paints. Additional optical properties degradation data were found from the Lunar Orbiter V mission, the Optical Properties Monitor, and the Materials International Space Station Experiment. Anticipated end-of-life thermal control coating performance for a FSP installation is postulated. With the FSP installation located away from landing and launching areas, and out of line-of-sight, lunar dust from human activity may not be a threat. The benefits of investing in next generation thermal control paint chemistry are explored.

  14. Hyperspectral imaging applied to end-of-life concrete recycling

    NASA Astrophysics Data System (ADS)

    Serranti, Silvia; Bonifazi, Giuseppe

    2014-03-01

    In this paper a new technology, based on HyperSpectral Imaging (HSI) sensors, and related detection architectures, is investigated in order to develop suitable and low cost strategies addressed to: i) preliminary detection and characterization of the composition of the structure to dismantle and ii) definition and implementation of innovative smart detection engines for sorting and/or demolition waste flow stream quality control. The proposed sensing architecture is fast, accurate, affordable and it can strongly contribute to bring down the economic threshold above which recycling is cost efficient. Investigations have been carried out utilizing an HSI device working in the range 1000-1700 nm: NIR Spectral Camera™, embedding an ImSpector™ N17E (SPECIM Ltd, Finland). Spectral data analysis was carried out utilizing the PLS_Toolbox (Version 6.5.1, Eigenvector Research, Inc.) running inside Matlab® (Version 7.11.1, The Mathworks, Inc.), applying different chemometric techniques, selected depending on the materials under investigation. The developed procedure allows assessing the characteristics, in terms of materials identification, such as recycled aggregates and related contaminants, as resulting from end-of-life concrete processing. A good classification of the different classes of material was obtained, being the model able to distinguish aggregates from other materials (i.e. glass, plastic, tiles, paper, cardboard, wood, brick, gypsum, etc.).

  15. Scenario for Hollow Cathode End-Of-Life

    NASA Technical Reports Server (NTRS)

    Sarver-Verhey, Timothy R.

    2000-01-01

    Recent successful hollow cathode life tests have demonstrated that lifetimes can meet the requirements of several space applications. However, there are no methods for assessing cathode lifetime short of demonstrating the requirement. Previous attempts to estimate or predict cathode lifetime were based on relatively simple chemical depletion models derived from the dispenser cathode community. To address this lack of predicative capability, a scenario for hollow cathode lifetime under steady-state operating conditions is proposed. This scenario has been derived primarily from the operating behavior and post-test condition of a hollow cathode that was operated for 28,000 hours. In this scenario, the insert chemistry evolves through three relatively distinct phases over the course of the cathode lifetime. These phases are believed to correspond to demonstrable changes in cathode operation. The implications for cathode lifetime limits resulting from this scenario are examined, including methods to assess cathode lifetime without operating to End-of- Life and methods to extend the cathode lifetime.

  16. Does end-of-life decision making matter? Perspectives of older homeless adults.

    PubMed

    Ko, Eunjeong; Nelson-Becker, Holly

    2014-03-01

    This qualitative pilot study explored perspectives, needs, and concerns relating to advance care planning among older homeless adults. Twenty-one older adults residing at a transitional housing facility in an urban area of the West coast were interviewed in person. Key emergent themes included discomfort with the topic, trust in God's decisions, physicians preferred as decision makers, and planning is important but not an immediate concern. Further, people who are homeless want to be approached with sensitivity. Instead of simply eliciting life-sustaining treatment preferences of homeless people, health care professionals should assess their unique concerns and needs regarding death and dying, prepare them to consider their possible end-of-life situation, and assist them to plan in accordance with their needs.

  17. [Medicine and Law: abdication of therapy by practitioners at the end of life].

    PubMed

    Rogler, Gerhard; Mausbach, Julian

    2013-12-31

    The question, how and when an individual decision for and end of medical treatment or abdication of therapy should be made remains difficult. Ethical considerations have to be taken into account with respect to a humane and dignified decease. The goal of our manuscript there for is to achieve more certainty with respect to juridical and legal preconditions and frameworks. The conditions in Switzerland support general practitioners and family doctors to fulfill patients' requests, wishes and wills in an outpatient setting. An awareness and sensitization for a dignified and humane care at the end of life - despite social changes and an increased importance of health economics - as well increasing support of outpatient palliative care become more and more important. Existing legal certainty and security of practitioners, therefore, will be outlined in the following.

  18. Ethos, mythos, and thanatos: spirituality and ethics at the end of life.

    PubMed

    Sulmasy, Daniel P

    2013-09-01

    Every ethos implies a mythos in the sense that every systematic approach to ethics is inevitably based on some fundamental religious or religion-like story that gives answers to questions such as: Where did I come from? Where am I going? How am I to live? These narratives generally lay hidden beneath the plane of the interpersonal interactions that characterize all clinical encounters, but caring for patients who are approaching death brings them closer to the surface. For many patients and practitioners, these narratives will be expressed in explicitly religious language; others may invoke a sense of "immanent transcendence" that affords a spiritual perspective without requiring theism or notions of eternity. In caring for patients at the end of life, practitioners should strive to be more conscious of the narratives that undergird their own spiritual and ethical positions as well as seek to understand those of the patients they serve.

  19. Ethos, mythos, and thanatos: spirituality and ethics at the end of life.

    PubMed

    Sulmasy, Daniel P

    2013-09-01

    Every ethos implies a mythos in the sense that every systematic approach to ethics is inevitably based on some fundamental religious or religion-like story that gives answers to questions such as: Where did I come from? Where am I going? How am I to live? These narratives generally lay hidden beneath the plane of the interpersonal interactions that characterize all clinical encounters, but caring for patients who are approaching death brings them closer to the surface. For many patients and practitioners, these narratives will be expressed in explicitly religious language; others may invoke a sense of "immanent transcendence" that affords a spiritual perspective without requiring theism or notions of eternity. In caring for patients at the end of life, practitioners should strive to be more conscious of the narratives that undergird their own spiritual and ethical positions as well as seek to understand those of the patients they serve. PMID:23810453

  20. Personhood within the context of sedation at the end of life in Singapore

    PubMed Central

    Radha Krishna, Lalit Kumar

    2013-01-01

    The concept of personhood is critical to the provision of holistic, patient-centred, palliative care yet no common definition of this term exists. Some characterise personhood by the presence of consciousness-related features such as self-awareness while others deem personhood present by virtue of Divine endowment or as a result of one's social relations. Efforts to appropriately delineate this concept come under scrutiny following suggestions that patients rendered deeply and irreversibly unconscious lack personhood and ought to be considered ‘dead’. This case report studies the views of a family caring for a deeply sedated terminally ill patient, to appropriately site local views of personhood within the context of sedation at the end of life. The resultant Ring Theory of Personhood dispenses with concerns that personhood is solely dependent upon consciousness and distances sedative treatments of last resort such as continuous deep sedation from euthanasia. PMID:23749859