Recognizing dying in terminal illness.

PubMed

Taylor, Paul M; Johnson, Miriam

2011-08-01

Recognizing dying in terminally ill patients is a complex clinical skill. This article outlines the approach to the decision, common difficulties encountered in patients with both malignant and non-malignant disease, and a simple approach to considering the question 'Is this patient dying?'

Assessing Hopelessness in Terminally Ill Cancer Patients: Development of the Hopelessness Assessment in Illness Questionnaire

ERIC Educational Resources Information Center

Rosenfeld, Barry; Pessin, Hayley; Lewis, Charles; Abbey, Jennifer; Olden, Megan; Sachs, Emily; Amakawa, Lia; Kolva, Elissa; Brescia, Robert; Breitbart, William

2011-01-01

Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended…

Shelter-based palliative care for the homeless terminally ill.

PubMed

Podymow, Tiina; Turnbull, Jeffrey; Coyle, Doug

2006-03-01

The homeless have high rates of mortality, but live in environments not conducive to terminal care. Traditional palliative care hospitals may be reluctant to accept such patients, due to behavior or lifestyle concerns. The Ottawa Inner City Health Project (OICHP) is a pilot study to improve health care delivery to homeless adults. This is a retrospective analysis of a cohort of terminally ill homeless individuals and the effectiveness of shelter-based palliative care. As proof of principle, a cost comparison was performed. 28 consecutive homeless terminally ill patients were admitted and died at a shelter-based palliative care hospice. Demographics, diagnoses at admission and course were recorded. Burden of illness was assessed by medical and psychiatric diagnoses, addictions, Karnofsky scale and symptom management. An expert panel was convened to identify alternate care locations. Using standard costing scales, direct versus alternate care costs were compared. 28 patients had a mean age 49 years; average length of stay 120 days. DIAGNOSES: liver disease 43%, HIV/AIDS 25%, malignancy 25% and other 8%. Addiction to drugs or alcohol and mental illness in 82% of patients. Karnofsky performance score mean 40 +/- 16.8. Pain management with continuous opiates in 71%. The majority reunited with family. Compared to alternate care locations, the hospice projected 1.39 million dollars savings for the patients described. The homeless terminally ill have a heavy burden of disease including physical illness, psychiatric conditions and addictions. Shelter-based palliative care can provide effective end-of-life care to terminally ill homeless individuals at potentially substantial cost savings.

Death Education and Attitudes toward Euthanasia and Terminal Illness.

ERIC Educational Resources Information Center

Nagi, Mostafa H.; Lazerine, Neil G.

1982-01-01

Analyzed attitudes of 614 Protestant and Catholic Cleveland clergy toward terminal illness and euthanasia. Clergy responses revealed that, although eager to prolong life, terminally ill patients feared prolonged illness more than death. The controversial nature of euthanasia became more apparent with clergy who had more training in death…

Terminally ill cancer patients' wish to hasten death.

PubMed

Kelly, B; Burnett, P; Pelusi, D; Badger, S; Varghese, F; Robertson, M

2002-07-01

This exploratory study investigated factors associated with the wish to hasten death among a sample of terminally ill cancer patients. Semi-structured interviews conducted on a total of 72 hospice and home palliative care patients were subjected to qualitative analysis using QSR-NUDIST. The main themes to emerge suggested that patients with a high wish to hasten death had greater concerns with physical symptoms and psychological suffering, perceived themselves to be more of a burden to others, and experienced higher levels of demoralization, while also reporting less confidence in symptom control, fewer social supports, less satisfaction with life experiences and fewer religious beliefs when compared with patients who had a moderate or no wish to hasten death. The implications of these findings will be discussed.

Rational suicide in the terminally ill.

PubMed

Fontana, Joyce S

2002-01-01

To examine the current debate over the right to die specific to the rational suicide of terminally ill patients. Literature was reviewed for information concerning historical end-of-life practices and the past acceptance of suicide. Another review showed philosophical opinions and perspectives that spanned from ancient Greece and the Roman Empire to modern philosophical discourse. A case study of a terminally ill woman who chose suicide is presented to apply the history and philosophy to nursing care today. As more nursing care is delivered in patients' homes, nurses will face this situation with increasing frequency. A call is made for organizations to provide guidelines for nursing practice.

Hope in terminal illness: an evolutionary concept analysis.

PubMed

Johnson, Sarah

2007-09-01

to clarify the concept of hope as perceived by patients with a terminal illness, to develop hope as an evidence-based nursing concept, to contribute new knowledge and insights about hope to the relatively new field of palliative care; endeavouring to maximize the quality of life of terminally ill patients in the future. utilizing Rodgers' (2000a) evolutionary concept analysis methodology and thematic content analysis, 17 pieces of research-based literature on hope as perceived by adult patients with any terminal illness pathology, from the disciplines of nursing and medicine have been reviewed and analyzed. An exemplary case of the concept in action is presented along with the evolution of the concept hope in terminal illness. Ten essential attributes of the concept were identified: positive expectation; personal qualities; spirituality; goals; comfort; help/caring; interpersonal relationships; control; legacy; and life review. Patients' hopes and goals are scaled down and refocused in order to live in the present and enjoy the time they have left with loved ones. By completing all the steps to Rodgers' (2000a) evolutionary view of concept analysis, a working definition and clarification of the concept in its current use has been achieved. This provides a solid conceptual foundation for further study.

The use of life review to enhance spiritual well-being in patients with terminal illnesses: An integrative review.

PubMed

Kwan, Cecilia W M; Ng, Marques S N; Chan, Carmen W H

2017-12-01

To conduct an integrative review of the current literature on using life review as an intervention to address the spiritual need of patients with terminal illnesses. Palliative care highlights the holistic approach of care including the spiritual aspect. Life review has been used in palliative nursing intending to enhance patients' emotional and spiritual well-being, and quality of life. However, there is a lack of publications that provide a structured overview on life review programmes and their effectiveness. Integrative review. The Whittemore and Knafl integrative review method was used. Five major online databases were included in our literature search. The keywords used were "life review" and "palliative care, terminal care, terminally ill, death & dying, hospice, spiritual wellbeing, spirituality". Seven primary papers were identified, critically appraised and synthesised in the final review. There are limited clinical studies on life review programmes for patients with terminal illness. The research design of these studies is too widely varied for meta-analysis. Here, we identified two major programmes of life review as an intervention to address the spiritual well-being of patients with terminal illness. However, repeated studies on the effectiveness of these two programmes are lacking. The shorter programme of life review is more likely to be applicable and effective for terminal patients. Further research in this area is required to provide strong evidence on the effectiveness and applicability of life review in patients receiving palliative care. This review adds weight to the need of a better understanding on the use of life review in addressing the spiritual needs of patients with terminal illness. Such understanding would provide evidence for the use of life review as an alternative approach in palliative care delivery. © 2017 John Wiley & Sons Ltd.

The influence of family adaptability and cohesion on anxiety and depression of terminally ill cancer patients.

PubMed

Park, Young-Yoon; Jeong, Young-Jin; Lee, Junyong; Moon, Nayun; Bang, Inho; Kim, Hyunju; Yun, Kyung-Sook; Kim, Yong-I; Jeon, Tae-Hee

2018-01-01

This study investigated the effect of family members on terminally ill cancer patients by measuring the relationship of the presence of the family caregivers, visiting time by family and friends, and family adaptability and cohesion with patient's anxiety and depression. From June, 2016 to March, 2017, 100 terminally ill cancer patients who were admitted to a palliative care unit in Seoul, South Korea, were surveyed, and their medical records were reviewed. The Korean version of the Family Adaptability and Cohesion Evaluation Scales III and Hospital Anxiety-Depression Scale was used. Chi-square and multiple logistic regression analyses were used. The results of the chi-square analysis showed that the presence of family caregivers and family visit times did not have statistically significant effects on anxiety and depression in terminally ill cancer patients. In multiple logistic regression, when adjusted for age, sex, ECOG PS, and the monthly average income, the odds ratios (ORs) of the low family adaptability to anxiety and depression were 2.4 (1.03-5.83) and 5.4 (1.10-26.87), respectively. The OR of low family cohesion for depression was 5.4 (1.10-27.20) when adjusted for age, sex, ECOG PS, and monthly average household income. A higher family adaptability resulted in a lower degree of anxiety and depression in terminally ill cancer patients. The higher the family cohesion, the lower the degree of depression in the patient. The presence of the family caregiver and the visiting time by family and friends did not affect the patient's anxiety and depression.

Common myths about caring for patients with terminal illness: opportunities to improve care in the hospital setting.

PubMed

Cherlin, Emily; Morris, Victor; Morris, Jensa; Johnson-Hurzeler, Rosemary; Sullivan, Gail M; Bradley, Elizabeth H

2007-11-01

Shortcomings in the quality of care of hospitalized patients at the end of life are well documented. Although hospitalists and residents are often involved in the care of hospitalized patients with terminal illness, little is known about their knowledge and beliefs concerning terminal illness, despite the importance of such physicians to the quality of care at the end of life. In 2006 we conducted an exploratory study at a large academic medical center to examine the knowledge, attitudes, and practices of hospitalists and residents (n = 52, response rate = 85.2%) about the care of terminally ill patients. Data were collected using a 22-item survey instrument adapted from previously published instruments. Several common myths about treating terminally ill patients were identified. These myths pertained to essential aspects of end-of-life care including pain and symptom control, indications for various medications, and eligibility for hospice. Physicians reported positive attitudes about hospice care as well as the belief that many patients who would benefit from hospice do not receive hospice at all or only late in the course of their illness. Our findings identified misunderstandings that hospitalists and residents commonly have, including about facts essential to know in order to provide appropriate pain and symptom management. Future interventions to improve knowledge need to focus on specific clinical knowledge about opioid therapy, as well as information about eligibility rules for hospice. (c) 2007 Society of Hospital Medicine.

The management of diabetes in terminal illness related to cancer.

PubMed

King, E J; Haboubi, H; Evans, D; Baker, I; Bain, S C; Stephens, J W

2012-01-01

The management of diabetes during terminal illness is complex, with lack of agreement and consensus among physicians and multidisciplinary teams. Despite the plethora of guidelines available for the management of diabetes, there exists no agreed, evidence-based strategy for managing diabetes during terminal illness and at the end of life. A number of physiological factors may influence glycaemic control during terminal illness. These include anorexia, cachexia, malabsorption, renal and hepatic failure. Furthermore, controversy exists on the frequency of blood glucose monitoring, the optimum blood glucose range and how to achieve this. We review the factors influencing blood glucose during terminal illness and provide a suggested approach to managing patients with type 1 and type 2 diabetes during the early and late stages of terminal illness.

Suicide and Terminal Illness.

ERIC Educational Resources Information Center

Marzuk, Peter M.

1994-01-01

Reviews epidemiology of suicide among terminally ill. Discusses clinical assessment and management of suicidal terminally ill, emphasizing differences from evaluation and treatment of other suicidal individuals. Focuses on methodological issues inherent in studying treatment and characteristics of this population. Suggests blurring of line between…

Preference for place-of-death among terminally ill cancer patients in Denmark.

PubMed

Neergaard, Mette Asbjoern; Jensen, Anders Bonde; Sondergaard, Jens; Sokolowski, Ineta; Olesen, Frede; Vedsted, Peter

2011-12-01

Achieving home death is often seen as an important endpoint in palliative care, but no studies of the preferred place-of-death have yet been conducted in Scandinavia. Furthermore, we do not know if professionals' report on deceased patients' preference of place-of-death is a valid information. The aim of this study was to describe where terminally ill Danish cancer patients prefer to die and to determine if their preference changed during the palliative period, as reported retrospectively by bereaved relatives, general practitioners (GPs) and community nurses (CNs) and to assess the agreement of their accounts. The study was a population-based, cross-sectional combined register and questionnaire study in Aarhus County, Denmark. The population comprised 599 deceased adult cancer patients who had died from 1 March to 30 November 2006 and were identified through merging of health registers. Relatives returned 198 questionnaires about patients' preferred place-of-death, GPs 333 and CNs 201. The study showed that most terminally ill cancer patients preferred home death (up to 80.7%). The reported preference for home death weakened as death approached (down to 64.4%). A better congruence was seen between relatives' and GPs' accounts of preference for place of death at the end of the palliative period (κ 0.71) than between relatives' and CNs' accounts (κ 0.37). In conclusion, bereaved relatives (and GPs and CNs) report retrospectively that most terminally ill cancer patients wish to die at home. The preference weakened significantly as death approached. The agreement between relatives' and GPs' accounts on patients' preferences at the end of the palliative period was 'substantial', whereas the agreement between relatives' and CNs' accounts at the same time was significantly less outspoken. This indicates that CNs may be facing a problem in assessing their patients' wishes retrospectively. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic

Meaninglessness in terminally ill cancer patients: a validation study and nurse education intervention trial.

PubMed

Morita, Tatsuya; Murata, Hisayuki; Hirai, Kei; Tamura, Keiko; Kataoka, Jun; Ohnishi, Hideki; Akizuki, Nobuya; Kurihara, Yukie; Akechi, Tatsuo; Uchitomi, Yosuke

2007-08-01

Recent empirical studies revealed that fostering patients' perception of meaning in their life is an essential task for palliative care clinicians. However, few studies have reported the effects of training programs for nurses specifically aimed at improving skills to relieve the meaninglessness of terminally ill cancer patients, and we have had no specific measurement instruments. The primary aims of this study were 1) to validate measurement tools to quantify nurses' self-reported practice and attitudes toward caring for terminally ill cancer patients feeling meaninglessness and 2) to explore the effects of the five-hour educational workshop focusing on meaninglessness on nurses' self-reported practice, attitudes toward caring for such patients, confidence, burnout, death anxiety, and meaning of life. A quasi-experimental pre-post questionnaire survey was performed on 147 nurses. The questionnaire was distributed before the intervention workshop and one and six months after. The workshop consisted of lecture, role-play, and the exercise of assessment and care planning based on two vignette verbatim records. First, using the first questionnaire sample and an additional sample of 20 nurses for the test-retest examination, we validated a six-item Self-Reported Practice scale, and an eight-item Attitudes Toward Caring for Patients Feeling Meaninglessness scale with three subscales (Willingness to Help, Positive Appraisal, and Helplessness). The nurses also completed a scale to assess confidence in caring for terminally ill patients with meaninglessness, the Maslach Burnout Inventory, the Death Attitude Inventory, the Frommelt Attitudes Toward Care of the Dying scale, the Self-Reported Practice Score in General Communication, and the three pain-related items from the Palliative Care Quiz for Nursing. For the Self-Reported Practice scale and the subscales of the Attitudes Toward Caring for Patients Feeling Meaninglessness scale, the Cronbach's alpha coefficients were 0

Effect of nutritional support on terminally ill patients with cancer in a palliative care unit.

PubMed

Amano, Koji; Morita, Tatsuya; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Uemura, Minako; Kobayashi, Yuka; Hori, Moeko; Wakayama, Hiroshi

2013-11-01

The role of nutritional support on terminally ill patients with cancer in a palliative care unit has not been clarified. A total of 63 patients were retrospectively investigated; the patients receiving individualized nutritional support (intervention group [n = 22]) were compared to the others (control group [n = 41]). The intervention group received individualized nutritional support. There were no significant differences in the characteristics of patients between the groups. The prevalence of bedsores was significantly lower in the intervention group (14% vs 46%, P = .012). The prevalence of edema and the use of antibiotic therapies tended to be lower in the intervention group than in the control group (36% vs 54%, P = .19; 14% vs 27%, P = .34, respectively). Some terminally ill patients with cancer in a palliative care unit might benefit from nutritional support.

Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death.

PubMed

Tang, Siew Tzuh; Chang, Wen-Cheng; Chen, Jen-Shi; Wang, Hung-Ming; Shen, Wen Chi; Li, Chung-Yi; Liao, Yen-Chi

2013-06-01

Few studies have investigated the impact of providing end-of-life care on family caregivers' depressive symptoms over time, especially until the patient's death. The purpose of this study was to identify the course and predictors of depressive symptoms in caregivers of terminally ill cancer patients until they died. For this prospective, longitudinal study of 193 caregivers, data were collected using the Center for Epidemiological Studies Depression Scale, Symptom Distress Scale, Medical Outcomes Study Social Support Survey, and Caregiver Reaction Assessment scale. The course and predictors of depressive symptoms were analyzed using the generalized estimating equation model. Caregivers' depressive symptoms increased as the patient's death approached. Spousal or adult child family caregivers suffered more depressive symptoms if they self-identified as lacking social support and confidence in offering substantial assistance for younger terminally ill cancer patients with higher levels of symptom distress. Caregivers were susceptible to higher levels of depressive symptoms if they were heavily burdened by caregiving, that is, experienced more disruptions in schedules, greater health deterioration, stronger sense of family abandonment, and lower caregiver esteem. Psychological well-being of caregivers of terminally ill cancer patients deteriorated in response to progression of the patient's disease and impending death. Effective interventions should be developed and provided to high-risk caregivers as identified in our study. Increasing caregivers' strength of perceived social support, facilitating their confidence in caregiving, and alleviating their subjective burden may lessen the development of depressive symptoms in caregivers of terminally ill cancer patients throughout the dying process. Copyright © 2012 John Wiley & Sons, Ltd.

Impact of awareness of terminal illness and use of palliative care or intensive care unit on the survival of terminally ill patients with cancer: prospective cohort study.

PubMed

Yun, Young Ho; Lee, Myung Kyung; Kim, Seon Young; Lee, Woo Jin; Jung, Kyung Hae; Do, Young Rok; Kim, Samyong; Heo, Dae Seog; Choi, Jong Soo; Park, Sang Yoon; Jeong, Hyun Sik; Kang, Jung Hun; Kim, Si-Young; Ro, Jungsil; Lee, Jung Lim; Park, Sook Ryun; Park, Sohee

2011-06-20

We conducted this study to evaluate the validity of the perception that awareness of their terminal prognosis and use of palliative care or nonuse of an intensive care unit (ICU) causes patients to die sooner than they would otherwise. In this prospective cohort study at 11 university hospitals and the National Cancer Center in Korea, we administered questionnaires to 619 consecutive patients immediately after they were determined by physicians to be terminally ill. We followed patients during 6 months after enrollment and assessed how their survival was affected by the disclosure of terminal illness and administration of palliative care or nonuse of the ICU. In a follow-up of 481 patients and 163.8 person-years, we identified 466 deceased patients. Nineteen percent of the patients died within 1 month, while 41.3% lived for 3 months, and 17.7% lived for 6 months. Once the cancer was judged terminal, the median survival time was 69 days. On multivariate analysis, neither patient awareness of terminal status at baseline (adjusted hazard ratio [aHR], 1.20; 95% CI, 0.96 to 1.51), use of a palliative care facility (aHR, 0.96; 95% CI, 0.76 to 1.21), nor general prostration (aHR, 1.23; 95% CI, 0.96 to 1.57) was associated with reduced survival. Use of the ICU (aHR, 1.47; 95% CI, 1.06 to 2.05) and poor Eastern Cooperative Oncology Group performance status (aHR, 1.37; 95% CI, 1.10 to 1.71) were significantly associated with poor survival. Patients' being aware that they are dying and entering a palliative care facility or ICU does not seem to influence patients' survival.

Employment status and work-related difficulties among family members of terminally ill patients compared with the general population.

PubMed

Kim, Seon Young; Chang, Yoon-Jung; Do, Young Rok; Kim, Sam Yong; Park, Sang Yoon; Jeong, Hyun Sik; Kang, Jung Hun; Kim, Si-Yung; Ro, Jung Sil; Lee, Jung Lim; Lee, Woo Jin; Park, Sook Ryun; Yun, Young Ho

2013-01-01

Although caregiving to patients with terminal illness is known to be a stressful burden to family members, little attention has been focused on work-related problems. We aimed to investigate employment status and work-related difficulties of family caregivers of terminal cancer patients, comparing with the general population. Using structured questionnaires, we assessed family caregivers of 481 cancer patients determined by physicians to be terminally ill, from 11 university hospitals and the National Cancer Center in Korea. Among 381 family caregivers of terminal cancer patients (response rate, 87.6%), 169 (43.9%) were not working before cancer diagnosis, but currently 233 (63.7%) were not working. Compared with the general population (36.5%), the percentage of not working among the family caregivers was higher (OR = 2.39; 95% CI= 1.73-3.29). A major reason for not working was to provide assistance to the patients (71.6%). 40.6% of those who continued working and 32.3% of those who not working family members reported extreme fatigue. Caregivers of old age, those who were female, those with a lower household income, and those caring for patients with a low performance status were not working at a more significant rate. Family caregivers of terminal cancer patients suffer job loss and severe work-related difficulties, probably due to caregiving itself and to fatigue. We need to develop supportive programs to overcome the burden of caregivers of the terminally ill.

Should we involve terminally ill patients in teaching medical students? A systematic review of patient's views.

PubMed

Harris, Dylan Gareth; Coles, Bernadette; Willoughby, Hannah May

2015-12-01

To review available published research that has explored how terminally ill patients feel about being involved in undergraduate medical teaching. A systematic review using narrative synthesis. Qualitative or quantitative publications were included if they directly explored the views of adult patients, with a terminal diagnosis, about their involvement in undergraduate clinical teaching. Seven publications met the inclusion criteria: one case report, one qualitative study and five questionnaire-based studies. A total of 269 patients were included across all studies. Patients were predominantly studied in a hospice or hospice day care setting. Both patients who had, and who had not, previously been involved in student teaching were captured by the included publications. In general, the views of patients were highly positive: overall 85%-100% were in favour of involvement in teaching. There were also some negative aspects, such as: concerns about being physically examined by a student; finding involvement in teaching tiring; feeling unable to decline consent to participate. An assumption that clinical undergraduate medical teaching involving terminally ill patients may be too burdensome is not reflected overall in studies that have sought the views of the patients themselves. Understanding the patient's perspective provides a number of practical points in relation to how clinical teaching should be adapted in this patient group; for example, using smaller student group sizes; direct supervision if physical examination performed; short encounters with multiple patients rather than a longer encounter with one patient; adequate informed consent beforehand and without the students automatically being present. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Ethics of physiotherapy practice in terminally ill patients in a developing country, Nigeria.

PubMed

Chigbo, N N; Ezeome, E R; Onyeka, T C; Amah, C C

2015-12-01

Physiotherapy has been widely defined as a healthcare profession that assesses, diagnoses, treats, and works to prevent disease and disability through physical means. The World Confederation for Physical Therapy describes physiotherapy as providing services to people and populations to develop, maintain, and restore maximum movement and functional ability throughout the lifespan. Physiotherapists working with terminally ill patients face a myriad of ethical issues which have not been substantially discussed in bioethics especially in the African perspective. In the face of resource limitation in developing countries, physiotherapy seems to be a cost-effective means of alleviating pain and distressing symptoms at the end-of-life, ensuring a more dignified passage from life to death, yet referrals to physiotherapy are not timely. Following extensive literature search using appropriate keywords, six core ethical themes related to physiotherapy in terminally ill patients were identified and using the four principles of bioethics (patient's autonomy, beneficence, nonmaleficence, and justice), an ethical analysis of these themes was done to highlight the ethical challenges of physiotherapists working in a typical African setting such as Nigeria.

Continuous subcutaneous infusion of compound oxycodone for the relief of dyspnea in patients with terminally ill cancer: a retrospective study.

PubMed

Kawabata, Masahiro; Kaneishi, Keisuke

2013-05-01

Pain and dyspnea are the most prevalent and distressing symptoms in patients with terminally ill cancer. Evidences have accumulated for the effects of morphine on dyspnea, whereas little is known about the effects of oxycodone on dyspnea. We investigated the effectiveness of oxycodone for dyspnea in patients with terminally ill cancer. The injectable form of compound oxycodone (iOC) containing hydrocotarnine was administered continuously via subcutaneous route. We administered iOC to 136 patients. The effect on dyspnea was less conspicuous than pain, yet iOC was effective for dyspnea with varying degrees. None of the adverse effects observed were serious. These results suggest that continuous subcutaneous administration of oxycodone could be one of the reasonable alternatives in the management of dyspnea in patients with terminally ill cancer.

Nicole: Suicide and Terminal Illness.

ERIC Educational Resources Information Center

Saunders, Judith M.; And Others

1993-01-01

Presents case summary of 58-year-old woman, terminally ill with cancer, who is contemplating suicide. Includes comments from Kjell Rudestam from the Fielding Institute and from Margaret Battin from the University of Utah who debate appropriate responses to people who contemplate suicide because of terminal illness. (NB)

Risk Management for Opioid Prescribing in the Treatment of Patients With Pain From Cancer or Terminal Illness: Inadvertent Oversight or Taboo?

PubMed

Copenhaver, David J; Karvelas, Nicolas B; Fishman, Scott M

2017-11-01

As the United States experiences an epidemic of prescription drug abuse, and guidelines on safe practices in prescribing opioids in chronic pain have subsequently emerged from professional organizations and governmental agencies, limited guidance exists for prescribers of opioids to treat pain in patients with cancer or terminal illness. Patients with active cancer or terminal illness often have pain and are frequently prescribed opioids and other controlled substances. Current studies suggest that patients with cancer have similar rates of risk for misuse, abuse, and addiction as the general public. Moreover, palliative care and hospice programs appear poorly prepared for assessing or managing patients with aberrant behaviors or evidence of drug abuse. Further research and professional consensus are needed to help address the challenges associated with misuse, abuse, and addiction in patients with cancer and terminal illness.

Palliative sedation for terminally ill cancer patients in a tertiary cancer center in Shanghai, China.

PubMed

Gu, Xiaoli; Cheng, Wenwu; Chen, Menglei; Liu, Minghui; Zhang, Zhe

2015-01-01

There are a number of studies dedicated to characteristics of sedation, but these studies are mostly bound to western country practices. The aim of this study is to describe the characteristics of patients who suffered from cancer and who had been sedated until their death in Shanghai, China. Retrospective medical data of 244 terminally ill cancer patients including 82 sedated patients were collected. Data collected included demographic characteristics, disease-related characteristics and details of the sedation. In sedated cases, patients and/or caregivers gave the consent to start palliative sedation due to unmanageable symptoms. On average, sedation was performed 24.65(±1.78)hours before death. Agitated delirium and dyspnea were the most frequent indications for palliative sedation. There was no significant difference in survival time from admission till death between sedated and non-sedated patients (p > 0.05). Palliative sedation is effective for reducing terminally ill cancer patients' suffering without hastening death. Prospective research is needed to determine the optimal conditions for Chinese patients including indications, decision making process, informed consent, cultural and ethical issues, type of sedation and drugs.

Relationships between personal attitudes about death and communication with terminally ill patients: How oncology clinicians grapple with mortality.

PubMed

Rodenbach, Rachel A; Rodenbach, Kyle E; Tejani, Mohamedtaki A; Epstein, Ronald M

2016-03-01

Clinician discomfort with death may affect care of patients but has not been well-studied. This study explores oncology clinicians' attitudes surrounding their own death and how these attitudes both affect and are affected by their care of dying patients and their communication with them. Qualitative interviews with physicians (n=25), nurse practitioners (n=7), and physician assistants (n=1) in medical or hematologic oncology clinical practices about communication styles, care of terminally ill patients, and personal perspectives about mortality. Clinicians described three communication styles used with patients about death and dying: direct, indirect, or selectively direct. Most reported an acceptance of their mortality that was "conditional," meaning that that they could not fully know how they would respond if actually terminally ill. For many clinicians, caring for dying patients affected their outlook on life and death, and their own perspectives on life and death affected their approach to caring for dying patients. An awareness of personal mortality may help clinicians to discuss death more openly with patients and to provide better care. Efforts to promote self-awareness and communication training are key to facilitating clear communication with and compassionate care of terminally ill patients. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Comforts of Home: Home Care of the Terminally Ill

PubMed Central

Fraser, Jacqueline

1990-01-01

When a terminal illness is diagnosed, it is appropriate for the family physician to take a primary role in future management. Care goals change from being disease-focused and cure-directed to being person-focused and comfort-targeted. The patient and family comprise the unit of care. Care of the terminally ill in the home requires good planning, teamwork, excellent symptom management, and a commitment by the family physician to be available or provide alternate coverage. Death in the home should be an option for the patient and family whenever feasible. Caring for patients until death and supporting their families and friends are rewarding and positive parts of family practice. PMID:21233972

Open communication with terminally ill cancer patients about illness and death: a comparison between spouses of Ashkenazi and Sephardi ethnic origins.

PubMed

Bachner, Yaacov G; Yosef-Sela, Nili; Carmel, Sara

2014-01-01

Studies document that caregivers face severe difficulties in communicating with their loved ones about both illness and death. To date, a paucity of studies has examined caregiver-patient communication at the end of life within the context of ethnic origin. This study compares the level of open communication between caregivers from 2 ethnic groups and examines the contribution of different caregiver characteristics and situational variables to the explanation of open communication. A total of 77 spouse caregivers of terminally ill cancer patients (comprising 41 Jews of Sephardi origin and 36 Jews of Ashkenazi origin) participated in the study. The questionnaire included measures of caregiver communication, caregiver characteristics (ie, age, gender, education level, optimism, self-efficacy), and situational variables (ie, duration and intensity of care). Spouses of Ashkenazi origin communicated more with their loved ones about illness and death compared with their Sephardi counterparts. Ethnic origin accounted for 16.6% of the explained variance, caregiver characteristics added 20.3%, and situation variables lent a modest contribution of 3.5%. Four variables emerged as significant predictors of caregivers' level of open communication: self-efficacy (β = .33, P < .05), gender (β = .32, P < .01), ethnic origin (β = .25, P <.05), and duration of care (β = .20, P < .05). These findings demonstrate the importance of ethnic origin to caregivers' open communication with terminal cancer patients about illness and death. Moreover, communication level with patients is mostly explained by the caregiver characteristics. Caregiver characteristics should be considered by nurses when developing intervention programs for increasing caregivers' level of open communication with dying patients.

The Relationship between Dignity Status and Quality of Life in Iranian Terminally Ill Patients with Cancer

PubMed Central

Hosseini, Abbas; Rezaei, Masoud; Bahrami, Masoud; Abbasi, Mohammad; Hariri, Hesammodin

2017-01-01

Background: Palliative care is an approach that has been used to care for terminally ill patients. The current study was performed to assess the association between the status of patient dignity and quality of life (QOL) in Iranian terminally ill patients with cancer. Materials and Methods: This descriptive correlational study was conducted on 210 end-stage cancer patients (102 men and 108 women) who were referred to Seyed Al-Shohada Hospital, Isfahan, Iran, in 2015. To assess dignity status, we used the Patient Dignity Inventory. The Persian version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire was used for QOL assessment. Results: There was a significant negative association between total dignity status and QOL scales. In addition, significant negative relationship was observed between dignity-related domains (loss of worth sense: r = −0.50, P < 0.001; anxiety and uncertainty: r = −0.51, P < 0.001; symptom distress: r = −0.62, P < 0.001; and loss of autonomy: r = −0.61, P < 0.001) and functional scale and some subscales of the QOL scale. In contrast, a significant positive relationship was found between dignity-related domains, and total symptom scale and fatigue. No significant relationship was observed between different items of dignity and global health status/QOL scale. Conclusions: High dignity status in terminally ill patients was associated with higher QOL in terms of functional intactness and lower symptom distress. Further studies are necessary to shed light to our findings. PMID:28706540

The impact of awareness of terminal illness on quality of death and care decision making: a prospective nationwide survey of bereaved family members of advanced cancer patients.

PubMed

Ahn, Eunmi; Shin, Dong Wook; Choi, Jin Young; Kang, Jina; Kim, Dae Kyun; Kim, Hyesuk; Lee, Eunil; Hwang, Kwan Ok; Oh, Bumjo; Cho, BeLong

2013-12-01

We aimed to assess whether awareness of a terminal illness can affect care decision making processes and the achievement of a good death in advanced cancer patients receiving palliative care services. Awareness of terminal illness at the time of palliative care service admission was assessed by the health care professionals during the routine initial comprehensive assessment process and was recorded in the national terminal cancer patient registry. A follow-up nationwide bereavement survey was conducted, which contained questions regarding decision making processes and the Korean version of the Good Death Inventory. Among the 345 patients included in the final analysis, the majority (68.4%) of the patients were aware of the terminal illness. Awareness of the terminal illness tended to reduce discordances in care decision making (adjusted odds ratio = 0.55; 95% CI: 0.29-1.07), and increased the patients' own decision making when there were discordances between patients and their families (adjusted odds ratio = 3.79; 95% CI: 1.31-10.94). The Good Death Inventory score was significantly higher among patients who were aware of their terminal illnesses compared with those who were not (5.04 vs. 4.80; p = 0.013) and especially in the domains of 'control over the future' (5.18 vs. 4.04; p < 0.001), 'maintaining hope and pleasure' (4.55 vs. 3.92; p = 0.002), and 'unawareness of death' (4.41 vs. 4.26; p = 0.024). Awareness of the terminal illness had beneficial effect on the harmonious decision making, patient autonomy, and patient's quality of death. Disclosure of terminal illness should be encouraged. Copyright © 2013 John Wiley & Sons, Ltd.

Coping with Loneliness among the Terminally Ill

ERIC Educational Resources Information Center

Rokach, Ami

2007-01-01

Loneliness is a universal phenomenon, and its pain is intensified by a diagnosis of a terminal illness. The present study is an investigation of the strategies used by patients with Multiple sclerosis (MS), by individuals diagnosed with cancer, and by the general population to cope with loneliness. Three hundred and twenty nine MS patients, 315…

Subcutaneous morphine infusion by syringe driver for terminally ill patients.

PubMed

Cools, H J; Berkhout, A M; De Bock, G H

1996-05-01

The study aimed to find whether subcutaneous morphine administration by syringe driver for terminally ill patients in a Dutch nursing home led to higher morphine doses and earlier death than routine morphine administration. The data comprised the files of all patients dying over a 2 year period in a 355-bed nursing home in Delft in the Netherlands. Thirty-eight per cent of the patients had been given morphine, 29% by continuous subcutaneous syringe driver. In comparing the patients given morphine with and without a syringe driver no differences emerged in mean age, sex, length of admission, type of ward, diagnosis, duration of morphine administration and mean dose. The data indicate that subcutaneous morphine administration by syringe driver decreases dose frequency problems and improves the control of pain and other symptoms in the last week before death. There was no evidence that administration of morphine in this way shortens survival.

Psychosocial Impact of Terminal Chronic Illness.

ERIC Educational Resources Information Center

Chubon, Robert A.

1988-01-01

Development of a terminal chronic illness creates a spectrum of problems which call for counseling interventions to assist in the individual's adjustment. This overview, intended to raise the consciousness of rehabilitation counselors, outlines the three stages of terminal illness, followed by an examination of resulting lifestyle and relationship…

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2013 CFR

2013-10-01

... 42 Public Health 3 2013-10-01 2013-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2012 CFR

2012-10-01

... 42 Public Health 3 2012-10-01 2012-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2014 CFR

2014-10-01

... 42 Public Health 3 2014-10-01 2014-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2011 CFR

2011-10-01

... 42 Public Health 3 2011-10-01 2011-10-01 false Certification of terminal illness. 418.22 Section... Certification of terminal illness. (a) Timing of certification—(1) General rule. The hospice must obtain written certification of terminal illness for each of the periods listed in § 418.21, even if a single election...

Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences.

PubMed

Smith, Alexander K; McCarthy, Ellen P; Paulk, Elizabeth; Balboni, Tracy A; Maciejewski, Paul K; Block, Susan D; Prigerson, Holly G

2008-09-01

Despite well-documented racial and ethnic differences in advance care planning (ACP), we know little about why these differences exist. This study tested proposed mediators of racial/ethnic differences in ACP. We studied 312 non-Hispanic white, 83 non-Hispanic black, and 73 Hispanic patients with advanced cancer in the Coping with Cancer study, a federally funded multisite prospective cohort study designed to examine racial/ethnic disparities in ACP and end-of-life care. We assessed the impact of terminal illness acknowledgment, religiousness, and treatment preferences on racial/ethnic differences in ACP. Compared with white patients, black and Hispanic patients were less likely to have an ACP (white patients, 80%; black patients, 47%; Hispanic patients, 47%) and more likely to want life-prolonging care even if he or she had only a few days left to live (white patients, 14%; black patients, 45%; Hispanic patients, 34%) and to consider religion very important (white patients, 44%; black patients, 88%; Hispanic patients, 73%; all P < .001, comparison of black or Hispanic patients with white patients). Hispanic patients were less likely and black patients marginally less likely to acknowledge their terminally ill status (white patients, 39% v Hispanic patients, 11%; P < .001; white v black patients, 27%; P = .05). Racial/ethnic differences in ACP persisted after adjustment for clinical and demographic factors, terminal illness acknowledgment, religiousness, and treatment preferences (has ACP, black v white patients, adjusted relative risk, 0.64 [95% CI, 0.49 to 0.83]; Hispanic v white patients, 0.65 [95% CI, 0.47 to 0.89]). Although black and Hispanic patients are less likely to consider themselves terminally ill and more likely to want intensive treatment, these factors did not explain observed disparities in ACP.

Terminal illness and access to Phase 1 experimental agents, surgeries and devices: reviewing the ethical arguments.

PubMed

Schüklenk, Udo; Lowry, Christopher

2009-01-01

The advent of AIDS brought about a group of patients unwilling to accept crucial aspects of the methodological standards for clinical research investigating Phase 1 drugs, surgeries or devices. Their arguments against placebo controls in trials, which depended--at the time--on the terminal status of patient volunteers led to a renewed discussion of the ethics of denying patients with catastrophic illnesses access to last-chance experimental drugs, surgeries or devices. Existing ethics and health policy literature on the topic of access to experimental drugs. The positions of those arguing for or against free access to experimental drugs for terminally ill patients are irreconcilable. At stake are questions about the kinds of personal sacrifices society can reasonably expect patients in clinical trials to make to ensure statistically predictive results. These would benefit by necessity a much larger number of current and future patients--the conflict is about individual versus public interests. It is also about the question of whether or not the state can legitimately prevent patients with terminal illnesses from unfettered access to experimental drugs, surgeries or devices in order to motivate them to participate in clinical trials. We review the ethical arguments for and against the provision of access to Phase 1 agents for terminally ill patients. Finding a compromise between providing free or no access to Phase 1 drugs for terminally ill patients. We ought to investigate means to increase access to experimental drugs for terminally ill patients without sacrificing necessary clinical trials' sounds scientific methods.

The arterial blood pressure associated with terminal cardiovascular collapse in critically ill patients: a retrospective cohort study.

PubMed

Brunauer, Andreas; Koköfer, Andreas; Bataar, Otgon; Gradwohl-Matis, Ilse; Dankl, Daniel; Dünser, Martin W

2014-12-19

blood pressure associated with terminal cardiovascular collapse in critically ill patients was very low and varied with individual co-morbid conditions (for example, congestive heart failure, left main stem stenosis, severe valvular aortic stenosis, acute right heart failure), drug exposure (for example, sedatives or opioids) and the type of acute illness (for example, sepsis).

THE ADOPTION OF BUDDHISM'S PRINCIPLES AS A MEANS OF IMPROVING PHYSICIANS' WORK WITH TERMINALLY ILL PATIENTS.

PubMed

Wolf, Ruth

2014-10-01

The medical approach as summarized by Leibowitz--"We must treat the person, not just the disease"--highlights the importance of treating the sick person and not only the illness' pathology. This approach calls for healing not only the physical side, but also--and mainly--the mental aspect of the patient. One of the goals of this article is to turn physicians' attention towards the compassion necessary in treating a person with a severe or chronic illness, or a person who is dying--precisely because sometimes there is no medical cure for the physical state of such a patient. Therefore, physicians' attention does need to be directed to providing emotional assistance to such a patient. Sometimes, the emotional strength the patient draws from the medical team that is treating him can change his view of, and approach to, the illness, and can enable his body to muster the emotional strength necessary to deal with his situation. Buddhism's approach enables the sick patient to experience his illness in a different way, by making peace with one's situation and, sometimes, even viewing the situation differently--viewing the illness as a type of renewal. Buddhism, therefore, enables a sick person to choose a different point of view when his energy is exhausted and he loses hope, providing quality of life to patients. In such a situation, a sick person finds emotional strength in the knowledge that the end of his life is actually a renewal somewhere else. The limited life expectancy of the terminally ill patient demands that he be able to spend his time with minimal concerns and worries, and does not leave much time for treating the emotional side--the patient's fear. In light of this fact, the patient's ability to look ahead and grasp at hope is the most important issue. As much as possible, this is accomplished in an atmosphere of acceptance and with the absence, or reduction, of fear. The freedom to decide for oneself how to behave, according to one's own approach, is what

How reliable are relatives' retrospective reports of terminal illness? Patients and relatives' accounts compared.

PubMed

Hinton, J

1996-10-01

To assess the accuracy of relatives' recollections of patients' terminal illness 71 out of 77 caring relatives were re-interviewed about 4 months after they and the patients had given regular interviews throughout care. Current and retrospective ratings of problems and feelings have been compared for agreement, using the kappa index. Several volunteered symptoms showed poor agreement, notably pain, anorexia and depression (kappa = 0.03-0.21), but vomiting, dyspnoea and immobility ratings agreed moderately well (kappa = 0.43-0.68). Current ratings from patients' and relatives' were always in better agreement with each other than with the relatives retrospective ratings. Bias sometimes altered apparent prevalence; pain was described as more severe in retrospect, but weakness, malaise, depression and relatives' stress were under-rated later. Ratings of "discomfort only" became less common for all symptoms retrospectively. The regular current assessments of patients' and relatives' emotional state also agreed only slightly with relatives' follow-up accounts of depression but somewhat better for anxiety. Patients stated knowledge of diagnosis, awareness and acceptance of dying matched the relatives' retrospective assessments moderately well (kappa = 0.70, 0.50 and 0.41). This study and other available evidence indicate that relatives' retrospective reports of terminal illness, measured against current ratings, are moderately reliable for some items but can vary or be potentially misleading over other aspects, including pain. This could affect evaluations of care.

The impact of loneliness on the relationship between depression and pain of Hong Kong Chinese terminally ill patients.

PubMed

Chan, Wallace Chi Ho; Kwan, Chi Wai; Chi, Iris; Chong, Alice Ming Lin

2014-05-01

Depression and pain often coexist in terminally ill patients, but few studies have examined their relationship among larger samples. Other psychosocial factors experienced by patients may become barriers to pain management and affect the relationship between depression and pain. This study aims to examine the relationship between depression and pain in terminally ill Chinese elders in Hong Kong and explore the moderating effect of psychosocial factors such as loneliness, communication, and being at ease interacting with others. A secondary data analysis was conducted on a large cohort of community-dwelling Chinese elders applying for long-term care service in Hong Kong between 2004 and 2009. A total of 312 elders who had a prognosis of less than 6 months were included. Depression was associated positively and significantly with pain. However, loneliness moderated this relationship, and for participants who felt lonely, depression and pain were no longer significantly associated. Findings support the positive relationship between depression and pain in terminally ill elders. Feeling lonely may affect the tendency to report pain. To ensure optimal pain management for patients in palliative and end-of-life care, assessment and intervention should focus on the impact of psychosocial factors such as loneliness, and how they may affect elders' reporting of pain.

The clinical use of N-terminal-pro brain natriuretic peptide in elderly patients with mental illness.

PubMed

Nilsson, Karin; Gustafson, Lars; Hultberg, Björn

2010-11-01

Serum N-terminal-pro brain natriuretic peptide (NT-proBNP) is regarded as a marker of vascular disease and has previously been shown to exhibit an increased frequency of pathological values in elderly patients with mental illness with vascular disease compared to patients without vascular disease. Vascular disease plays an important role in cognitive impairment in elderly patients with mental illness. We have investigated the relation between NT-proBNP, vascular disease and cognition in consecutively enrolled elderly patients with mental illness. NT-proBNP level is increased in patients with vascular disease compared to patients without vascular disease, and a logistic regression analysis showed that NT-proBNP was a significant predictor of vascular disease. However, NT-proBNP level did not predict cognition as assessed by MMSE score. NT-proBNP level also showed a highly significant relation to mortality in all patients. Determinations of NT-proBNP could be used in elderly patients with mental illness to detect patients in need of control and treatment of vascular risk factors. The levels of NT-proBNP may also provide prognostic information. Copyright © 2010 The Canadian Society of Clinical Chemists. Published by Elsevier Inc. All rights reserved.

The preference of place of death and its predictors among terminally ill patients with cancer and their caregivers in China.

PubMed

Gu, Xiaoli; Cheng, Wenwu; Cheng, Menglei; Liu, Minghui; Zhang, Zhe

2015-12-01

To describe the preference of place of death among Chinese patients with cancer and their caregivers and to identify factors associated with the preference. A prospective questionnaire research was conducted in terminally ill patients with cancer and their caregivers. Questions included sociodemographic characteristics and information about patients' diseases and patients' preference of place of death. Home (53.64%) was the first choice for 522 patients, 51.34% of participated caregivers chose home as the preferred place of death, and patient-caregiver dyads achieved 84.10% agreement. Patients who lived in rural area, with lower education level and lived with relatives, expressed more preference to die at home. This study described information about the preference of place of death and its potential predictive factors in terminally ill patients with cancer in mainland of China. © The Author(s) 2014.

Characteristics of Oral Problems and Effects of Oral Care in Terminally Ill Patients With Cancer.

PubMed

Nakajima, Nobuhisa

2017-06-01

Various distresses appear in the terminal stage of cancer. Oral problems including dry mouth, stomatitis and candidiasis are one of the important problems which should be resolved. The purpose of this study was to investigate oral problems in this stage and improvement of dry mouth by oral care. The study subjects were consecutive terminally ill cancer patients admitted over the past 2 years. Patients were divided based on the status of oral food intake into good oral food intake group (≥30%) and poor oral food intake group. The following 3 items were retrospectively investigated: 1) The incidences of these oral problems, 2) Severity of dry mouth and complication with other oral problems, 3) Improvement of dry mouth using standard oral care by nursing staff and specialist oral care including dentists as needed. There were 115 and 158 patients in good and poor oral intake groups, respectively. 1) The incidences of dry mouth, stomatitis, and candidiasis were significantly higher in poor oral intake group ( p < 0.001). 2) Severe cases of dry mouth (Grade-2&3) were noted in 20.0% and 64.8% in good and poor oral intake groups, respectively ( p < 0.0001). Candidiasis complication rate was significantly higher in poor oral intake group ( p = 0.0002). 3) The rate of dry mouth improvement by oral care was 100% in Grade-1, 86% in Grade-2 and 81% in Grade-3. Oral problems occur in many of terminally ill cancer patients. Accurate diagnosis of oral problems and corresponding appropriate interventions are important for improving quality of end-of-life care.

Favored subjects and psychosocial needs in music therapy in terminally ill cancer patients: a content analysis.

PubMed

Preissler, Pia; Kordovan, Sarah; Ullrich, Anneke; Bokemeyer, Carsten; Oechsle, Karin

2016-05-12

Research has shown positive effects of music therapy on the physical and mental well-being of terminally ill patients. This study aimed to identify favored subjects and psychosocial needs of terminally ill cancer patients during music therapy and associated factors. Forty-one Patients receiving specialized inpatient palliative care prospectively performed a music therapy intervention consisting of at least two sessions (total number of sessions: 166; per patient average: 4, range, 2-10). Applied music therapy methods and content were not pre-determined. Therapeutic subjects and psychosocial needs addressed in music therapy sessions were identified from prospective semi-structured "field notes" using qualitative content analysis. Patient- and treatment-related characteristics as well as factors related to music and music therapy were assessed by questionnaire or retrieved from medical records. Seven main categories of subjects were identified: "condition, treatment, further care", "coping with palliative situation", "emotions and feelings", "music and music therapy", "biography", "social environment", and "death, dying, and spiritual topics". Patients addressed an average of 4.7 different subjects (range, 1-7). Some subjects were associated with gender (p = .022) and prior impact of music in patients' life (p = .012). The number of subjects per session was lower when receptive music therapy methods were used (p = .040). Psychosocial needs were categorized into nine main dimensions: "relaxing and finding comfort", "communication and dialogue", "coping and activation of internal resources", "activity and vitality", "finding expression", "sense of self and reflection", "finding emotional response", "defocusing and diversion", and "structure and hold". Patients expressed an average of 4.9 psychosocial needs (range, 1-8). Needs were associated with age, parallel art therapy (p = .010), role of music in patient's life (p = .021), and the applied music

Truth-telling to patients' terminal illness: what makes oncology nurses act individually?

PubMed

Huang, Shu-He; Tang, Fu-In; Liu, Chang-Yi; Chen, Mei-Bih; Liang, Te-Hsin; Sheu, Shuh-Jen

2014-10-01

Nurses encounter the challenge of truth-telling to patients' terminal illness (TTPTI) in their daily care activities, particularly for nurses working in the pervasive culture of family protectiveness and medical paternalism. This study aims to investigate oncology nurses' major responses to handling this issue and to explore what factors might explain oncology nurses' various actions. A pilot quantitative study was designed to describe full-time nurses' (n = 70) truth-telling experiences at an oncology centre in Taipei. The potential influencing factors of nurses' demographic data, clinical characteristics, and truth-telling attitudes were also explored. Most nurses expressed that truth-telling was a physician's responsibility. Nevertheless, 70.6% of nurses responded that they had performed truth-telling, and 20 nurses (29.4%) reported no experience. The reasons for inaction were "Truth-telling is not my duty", "Families required me to conceal the truth", and "Truth-telling is difficult for me". Based on a stepwise regression analysis, nurses' truth-telling acts can be predicted based on less perceived difficulty of talking about "Do not resuscitate" with patients, a higher perceived authorisation from the unit, and more oncology work experience (adjusted R² = 24.1%). Oncology care experience, perceived comfort in communication with terminal patients, and unit authorisation are important factors for cultivating nurses' professional accountability in truth-telling. Nursing leaders and educators should consider reducing nursing barriers for truth-telling, improving oncology nurses' professional accountability, and facilitating better quality care environments for terminal patients. Copyright © 2014 Elsevier Ltd. All rights reserved.

Health services utilization during terminal illness in Addis Ababa, Ethiopia

PubMed Central

Reniers, Georges; Tesfai, Rebbeca

2009-01-01

Objectives We describe modern and alternative health services use in terminal illness of adults, and assess whether utilization patterns of TB/AIDS patients are distinct from those of patients suffering from other illnesses. Methods Data are from post-mortem interviews with close relatives or caretakers of the deceased. We provide descriptive statistics of health care utilization in adults and discuss their covariates in multivariate analyses. Results Over 85% of terminally sick patients visited a modern medical facility, but less than 40% spent more than 24 hours in a medical facility and only 25% died in one. Traditional healer (11%) and holy water (46%) visits offer a common treatment and healing alternative, but these visits do not co-vary in any consistent manner with the utilization of modern medical services. In terms of the cause of death, we find a higher contact rate with both modern and alternative medical service providers among TB/AIDS patients compared with those suffering from other medical conditions. The duration of illness seems to account for a good share of that variability. Other covariates of health services utilization are socio-economic status, education and age. Conclusions The contact rate of adults with modern medical facilities in terminal illness is almost universal, but their usage intensity is rather low. Alternative curative options are less commonly used, and do not exclude modern health services use. This suggests that both types of services are considered complements rather than alternatives for each other. Because the contact rate with health service providers is greatest for TB/AIDS patients, it is unlikely that HIV/AIDS-related stigma is an impediment to seeking care. We cannot exclude, however, that it delays health-seeking behaviour. PMID:19372240

Health services utilization during terminal illness in Addis Ababa, Ethiopia.

PubMed

Reniers, Georges; Tesfai, Rebbeca

2009-07-01

OBJECTIVES We describe modern and alternative health services use in terminal illness of adults, and assess whether utilization patterns of TB/AIDS patients are distinct from those of patients suffering from other illnesses. METHODS Data are from post-mortem interviews with close relatives or caretakers of the deceased. We provide descriptive statistics of health care utilization in adults and discuss their covariates in multivariate analyses. RESULTS Over 85% of terminally sick patients visited a modern medical facility, but less than 40% spent more than 24 hours in a medical facility and only 25% died in one. Traditional healer (11%) and holy water (46%) visits offer a common treatment and healing alternative, but these visits do not co-vary in any consistent manner with the utilization of modern medical services. In terms of the cause of death, we find a higher contact rate with both modern and alternative medical service providers among TB/AIDS patients compared with those suffering from other medical conditions. The duration of illness seems to account for a good share of that variability. Other covariates of health services utilization are socio-economic status, education and age. CONCLUSIONS The contact rate of adults with modern medical facilities in terminal illness is almost universal, but their usage intensity is rather low. Alternative curative options are less commonly used, and do not exclude modern health services use. This suggests that both types of services are considered complements rather than alternatives for each other. Because the contact rate with health service providers is greatest for TB/AIDS patients, it is unlikely that HIV/AIDS-related stigma is an impediment to seeking care. We cannot exclude, however, that it delays health-seeking behaviour.

Treatment of nausea and vomiting in terminally ill cancer patients.

PubMed

Glare, Paul A; Dunwoodie, David; Clark, Katherine; Ward, Alicia; Yates, Patsy; Ryan, Sharon; Hardy, Janet R

2008-01-01

Nausea and vomiting is a common and distressing symptom complex in patients with far-advanced cancer, affecting up to 60% of individuals at some stage of their illness. The current approach to the palliative care of patients with nausea and vomiting is based on identifying the cause, understanding its pathophysiology and knowing the pharmacology of the drugs available for its amelioration. The following six main syndromes are identified: gastric stasis, biochemical, raised intracranial pressure, vestibular, mechanical bowel obstruction and ileus. A careful history, focused physical examination and appropriate investigations are needed to elucidate the syndrome and its cause, so that therapy is rational. Drugs are the mainstay of treatment in terminal cancer, and the main classes of antiemetic agents are prokinetics, dopamine antagonists, antihistamines, anticholinergics and serotonin antagonists. Dexamethasone and octreotide are also used, especially in bowel obstruction. Non-drug measures are important in relieving the associated distress. Patients should be able to die comfortably, without tubes. Despite decades of practice affirming this approach, the evidence base is weak and well designed studies are urgently needed.

Experiences of sexuality and intimacy in terminal illness: a phenomenological study.

PubMed

Taylor, Bridget

2014-05-01

There is a paucity of research considering sexuality and intimacy in palliative care. It is therefore unclear whether palliative care professionals have a role in addressing these issues with patients and their partners. To understand people's experiences of sexuality and intimacy when living with a terminal illness. A Heideggerian hermeneutic (interpretive) phenomenological study was undertaken. Data were collected using one-to-one conversational interviews. An iterative approach to analysing the narratives was used to reveal shared meanings. A total of 27 patients and 14 partners of patients with either cancer or motor neuron disease were recruited from outpatient, community and hospice inpatient units. All participants were aware that the illness was life-limiting. When someone is living with a life-limiting illness, their coupled relationship is also dying. In their being-towards-death-of-the-couple, patients and partners of patients with motor neuron disease and terminal cancer experienced connecting and disconnecting within their coupled relationship. Becoming-apart-as-a-couple was experienced as loss of spontaneity, as lack of reciprocity and as rejection. This was influenced by a range of factors including medical treatments, disfigurement and the disabling effects of equipment. Some participants experienced re-connecting through becoming-closer-as-a-couple, although this was not always sustained. This study sheds new light on people's experiences of sexuality and intimacy when living with a terminal illness. The ethos of holistic care requires palliative care professionals to provide opportunities for patients and their partners to discuss any concerns they might have about their coupled relationship and to understand the meanings symptoms have for them.

Compatibility and stability of tramadol and dexamethasone in solution and its use in terminally ill patients.

PubMed

Negro, S; Salama, A; Sánchez, Y; Azuara, M L; Barcia, E

2007-10-01

Delivery of drug admixtures by continuous subcutaneous infusion is common practice in palliative medicine, but analytical confirmation of their compatibility and stability is not always available. To study the compatibility and stability of tramadol hydrochloride and dexamethasone sodium phosphate combined in solution and to report on its use in terminally ill patients. Twelve different solutions containing tramadol hydrochloride (8.33-33.33 mg/mL) and dexamethasone sodium phosphate (0.33-3.33 mg/mL) were prepared in saline and stored in polypropylene syringes for 5 days (25 degrees C). Analysis was performed on days 1, 3 and 5 days with simultaneous determination by HPLC. pH was measured at 0 and 5 days. Clinical performance was assessed retrospectively in six terminal-ill oncology patients. Maximum losses of 7% and 6% were observed for tramadol and dexamethasone. Pain was completely controlled in four patients. Local tolerance resulted in haematoma in three patients, which resolved by switching to a butterfly insertion site. Tramadol hydrochloride (100-400 mg/day) and dexamethasone sodium phosphate (4-40 mg/day) are stable for at least 5 days when combined in saline and stored at 25 degrees C. These results are only valid for the type of syringes and the specific commercial preparations tested.

The experience and expectations of terminally ill patients receiving music therapy in the palliative setting: a systematic review.

PubMed

Qi He Mabel, Leow; Drury, Vicki Blair; Hong, Poon Wing

Music therapy is a popular form of complementary therapy used in the hospice in Western countries, as people who are terminally ill have several needs arising directly from the disease process. In the area of palliative care, no systematic review has been conducted on the experience of patients using music therapy from the qualitative perspective. Hence, a synthesized summary of the experience of music therapy is presented. The aim of this review was to critically analyse and synthesize existing evidence related to terminally ill patients' experiences of using music therapy in the palliative setting. This review considered quantitative descriptive studies, and qualitative research with adult participants who were terminally ill receiving palliative care in a hospital, an in-patient hospice, a nursing home, or their own homes, regardless of their diagnosis who had undergone at least one music therapy session with a trained music therapist and were not cognitively impaired. Healthcare workers who have witnessed patients participating in music therapy were also included in the review. Only published primary research studies were included in the review. This review was limited to papers in English. A three-step search strategy was undertaken. First, an initial limited search of CINAHL and MEDLINE was done. Second, an extensive search using all identified keywords and index terms across all included databases was done. Finally, a hand search of the reference lists and bibliographies of included articles was conducted METHODOLOGICAL QUALITY: Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (QARI) for qualitative papers, and Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) for quantitative descriptive papers

Rational Suicide and the Crisis of Terminal Illness.

ERIC Educational Resources Information Center

Lokhandwala, Tasneem M.; Westefeld, John S.

1998-01-01

Whether or not suicide may be considered a rational choice for clients with terminal illness is controversial. Rational suicide and the literature and statistics pertaining to suicide and terminal illness are reviewed. Implications of accepting rational suicide as a treatment option, including moral and ethical issues, are addressed. (Author/EMK)

Illness awareness in terminal cancer patients: an Italian study.

PubMed

Corli, O; Apolone, G; Pizzuto, M; Cesaris, L; Cozzolino, A; Orsi, L; Enterri, L

2009-06-01

The amount and quality of information and awareness in cancer patients' is a topic frequently debated, but few studies have focussed on terminal patients. This is the objective of the present study that involved two different palliative home-care units in Italy, which recruited 550 terminal cancer patients. Data from patients and their caregivers was prospectively collected with special attention to information patients were provided with when their cancer was diagnosed and patients' awareness of their current health condition. In the case of the information, 67.0% of patients reported they were previously informed about their diagnosis, but only 58.0% seemed to be aware of their terminal condition. The comparison between the caregivers opinions about the level of information provided to the patients and their present awareness and what the patients really know about their own disease shows a high degree of correspondence. Some variables such as age and education level of patients were associated with patient's awareness.

[Palliative care support teams and the commitment of primary care teams to terminally ill patients in their homes].

PubMed

Rocafort Gil, Javier; Herrera Molina, Emilio; Fernández Bermejo, Félix; Grajera Paredes María, María Eulalia; Redondo Moralo, María José; Díaz Díez, Fátima; Espinosa Rojas, José Armando

2006-10-15

To find out if the activity of palliative care support teams (PCST) does not negatively influences the performance of the primary care "care of terminally ill patients" service. Terminally ill patients cared for at home. Multicentre observational study. The observed variable is the increase in the number of registered patients in primary care, and the number of patients covered between the years 2002 and 2003 and the 4 intervention variables are: total visits, joint visits, assessments, and teaching sessions. The number of patients covered in 2002 was 41.19%, increasing to 45.44% in 2003. The activity rate of the PCST for each 100 000 inhabitants was 526 home visits in 2003, 86.15 joint visits, 313.68 professional assessments, and 23.14 teaching sessions. The joint visits and the teaching sessions were strongly associated with an improvement in the coverage of primary care (Pearson correlation of 0.784 and 0.759, respectively). The total visits were moderately associated (0.525) and the assessments were weakly associated (0.245). Joint visits and teaching sessions of a PCST are associated to an increase in the activity of primary care teams. Assessments and total visits did not have a negative influence.

[A clinical study using octreotide in relieving gastrointestinal symptoms due to bowel obstruction in a terminally ill cancer patient].

PubMed

Shima, Yasuo; Yamaguchi, Kensei; Miyata, Yoshinori; Hyodo, Ichinosuke; Yagi, Yasuo; Honke, Yoshifumi

2004-09-01

Terminally ill cancer patients with complicated bowel obstructions often have poor quality of life (QOL) due to gastrointestinal symptoms such as nausea and vomiting. Many of these patients are inoperable because of poor general conditions, and half of these patients can't be managed by conventional antiemetics. There are many reports indicating octreotide is effective for these patients. In the present study, 13 patients (5 patients without a nasogastric tube and 8 patients with) were administered octreotide at 300 microg/day by 24 hours continuous subcutaneous infusion. Among the effectively evaluable 10 cases, 6 cases (60.0%) were assessed as effective according to the efficacy criteria based on the JCOG toxicity scale. In the 6 cases who had nasogastric tubes, the nasogastric aspirates decreased from 890 ml (550-1,950) to 480 ml (180-1,790). Vomiting was successfully controlled after the removals of nasogastric tubes in 4 out of 6 cases (66.7%), regarding safety, 2 out of 13 cases (15.4%) showed an excess of liver enzymes but no clinically suspected adverse effect was observed. Octreotide is effective and well tolerated in terminally ill cancer patients with malignant bowel obstruction.

Hospital-Based Physicians' Intubation Decisions and Associated Mental Models when Managing a Critically and Terminally Ill Older Patient.

PubMed

Haliko, Shannon; Downs, Julie; Mohan, Deepika; Arnold, Robert; Barnato, Amber E

2018-04-01

Variation in the intensity of acute care treatment at the end of life is influenced more strongly by hospital and provider characteristics than patient preferences. We sought to describe physicians' mental models (i.e., thought processes) when encountering a simulated critically and terminally ill older patient, and to compare those models based on whether their treatment plan was patient preference-concordant or preference-discordant. Seventy-three hospital-based physicians from 3 academic medical centers engaged in a simulated patient encounter and completed a mental model interview while watching the video recording of their encounter. We used an "expert" model to code the interviews. We then used Kruskal-Wallis tests to compare the weighted mental model themes of physicians who provided preference-concordant treatment with those who provided preference-discordant treatment. Sixty-six (90%) physicians provided preference-concordant treatment and 7 (10%) provided preference-discordant treatment (i.e., they intubated the patient). Physicians who intubated the patient were more likely to emphasize the reversible and emergent nature of the patient situation (z = -2.111, P = 0.035), their own comfort (z = -2.764, P = 0.006), and rarely focused on explicit patient preferences (z = 2.380, P = 0.017). Post-decisional interviewing with audio/video prompting may induce hindsight bias. The expert model has not yet been validated and may not be exhaustive. The small sample size limits generalizability and power. Hospital-based physicians providing preference-discordant used a different mental model for decision making for a critically and terminally ill simulated case. These differences may offer targets for future interventions to promote preference-concordant care for seriously ill patients.

Prospective Study on Music Therapy in Terminally Ill Cancer Patients during Specialized Inpatient Palliative Care.

PubMed

Kordovan, Sarah; Preissler, Pia; Kamphausen, Anne; Bokemeyer, Carsten; Oechsle, Karin

2016-04-01

This study was a prospective evaluation of feasibility, acceptance, and potential beneficial effects of music therapy in terminally ill cancer patients on a specialized palliative care inpatient ward. Intervention had to consist of at least two sessions, but frequency and duration was left to the patients` decision. Different music therapy methods were offered to the patient at the beginning of every session. Patients rated their subjective benefit. Disease-related and sociodemographic factors were considered as potentially influencing factors. A total of 166 music therapy sessions were performed with 41 patients (average, 4; range, 2-10). Average session duration was 41 minutes (range, 20-70). Most favored methods were therapeutic conversation in 84% of sessions; listening to relaxing music, 39%; playing an instrument, 31%; and music-lead imagination, 11%. Receptive music therapy was applied in 45%, active forms in 25%, a combination of both in 7%, and therapeutic conversation only in 23%. Music therapy was rated to be "helpful" in 68%. Positive effects were significantly associated with frequency (p = 0.009) and duration (p = 0.040), living in a partnership (p = 0.017), having children (p = 0.035), psycho-oncologic therapy (p = 0.043), experience with music therapy (p = 0.007), role of music in life (p = 0.035), playing an instrument (p = 0.021), and singing regularly (p = 0.003). Music therapy techniques, especially receptive methods, are feasible and well accepted in terminally ill cancer patients. Therapeutic conversation seems to play an important role. Frequency and duration of music therapy, previous experience with music and music therapy, as well as sociodemographic factors influence positive effects of music therapy.

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

PubMed

Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

2014-05-01

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

Do Incarcerated Offenders Experience the Five Stages of Grief as Do Terminally Ill Patients?

ERIC Educational Resources Information Center

Pledger, Carolyn Brastow

1985-01-01

Examines Kubler-Ross' five stages of grief (denial, anger, bargaining, depression, acceptance) as they are experienced not by terminally ill persons, but by 20 criminal offenders and their families during incarceration. Concludes that shock of arrest and incarceration stimulates reactions similar to those of persons coping with terminal diagnosis.…

The effects of spiritual care on quality of life and spiritual well-being among patients with terminal illness: A systematic review.

PubMed

Chen, Jingyi; Lin, Yazhu; Yan, Jie; Wu, Yong; Hu, Rong

2018-04-01

Terminal illness not only causes physical suffering but also spiritual distress. Spiritual care has been widely implemented by healthcare professionals to assist patients coping with spiritual distress. However, the effects of spiritual care need to be clear. To evaluate the effects of spiritual care on quality of life and spiritual well-being among patients with terminal illness. Systematic review according to the recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidance. A comprehensive search was conducted in nine electronic databases from date of inception to May 2017. Hand searches of the bibliographies of relevant articles were also performed. The studies were independently reviewed by two investigators who scored them for methodological quality using the Cochrane Risk of Bias Tool. No statistical pooling of outcomes was performed and a narrative summary was chosen to describe the included studies. A total of 19 studies with 1548 participants were identified in the systematic review, corresponding to seven kinds of interventions. The risk of bias for these studies were all rated as moderate. A majority of studies indicated that spiritual care had a potential beneficial effect on quality of life and spiritual well-being among patients with terminal illness. It is suggested that healthcare professionals integrate spiritual care with usual care in palliative care. When providing spiritual care, healthcare professionals should take into consideration patients' spiritual needs, preference, and cultural background. More multicenter and disciplinary studies with rigorous designs are needed in the future.

Construction of a new, objective prognostic score for terminally ill cancer patients: a multicenter study.

PubMed

Suh, Sang-Yeon; Choi, Youn Seon; Shim, Jae Yong; Kim, Young Sung; Yeom, Chang Hwan; Kim, Daeyoung; Park, Shin Ae; Kim, Sooa; Seo, Ji Yeon; Kim, Su Hyun; Kim, Daegyeun; Choi, Sung-Eun; Ahn, Hong-Yup

2010-02-01

The goal of this study was to develop a new, objective prognostic score (OPS) for terminally ill cancer patients based on an integrated model that includes novel objective prognostic factors. A multicenter study of 209 terminally ill cancer patients from six training hospitals in Korea were prospectively followed until death. The Cox proportional hazard model was used to adjust for the influence of clinical and laboratory variables on survival time. The OPS was calculated from the sum of partial scores obtained from seven significant predictors determined by the final model. The partial score was based on the hazard ratio of each predictor. The accuracy of the OPS was evaluated. The overall median survival was 26 days. On the multivariate analysis, reduced oral intake, resting dyspnea, low performance status, leukocytosis, elevated bilirubin, elevated creatinine, and elevated lactate dehydrogenase (LDH) were identified as poor prognostic factors. The range of OPS was from 0.0 to 7.0. For the above cutoff point of 3.0, the 3-week prediction sensitivity was 74.7%, the specificity was 76.5%, and the overall accuracy was 75.5%. We developed the new OPS, without clinician's survival estimates but including a new prognostic factor (LDH). This new instrument demonstrated accurate prediction of the 3-week survival. The OPS had acceptable accuracy in this study population (training set). Further validation is required on an independent population (testing set).

Abandonment of terminally ill patients in the Byzantine era. An ancient tradition?

PubMed

Lascaratos, J; Poulakou-Rebelakou, E; Marketos, S

1999-06-01

Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content.

Abandonment of terminally ill patients in the Byzantine era. An ancient tradition?

PubMed Central

Lascaratos, J; Poulakou-Rebelakou, E; Marketos, S

1999-01-01

Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content. PMID:10390682

Coping with terminal illness: the experience of attending Specialist Palliative Day Care.

PubMed

Bradley, Sarah Elizabeth; Frizelle, Dorothy; Johnson, Miriam

2010-10-01

The provision of supportive and palliative care for people with life-shortening illness has been emphasized throughout Department of Health and National Institute of Clinical Excellence (NICE) cancer guidance. However, the question of whether services are achieving this aim has been sparsely researched to date particularly in relation to Specialist Palliative Day Care (SPDC) services. The current study aims to explore the experiences of patients attending SPDC with regard to coping with a terminal illness. The views of 11 patients attending SPDC were explored using semistructured interviews. An exploratory methodology (Interpretative Phenomenological Analysis [IPA]) was used to analyze the data to allow for an in-depth investigation. Emerging themes suggest that SPDC provides an environment in which patients are helped to cope with stressors through a sense of self, belonging, acceptance of the reality of death, and a focus on life. This work provides a piece of the puzzle in the exploration of the processes underpinning attendance at SPDC from a patient's perspective. It suggests that SPDC provides an environment in which patients receive help in coping with terminal illness. In such an under researched area it provides an insight regarding SPDC attendance which can be built upon or challenged by future research.

The ethical challenges of providing fertility care to patients with chronic illness or terminal disease.

PubMed

Chilvers, Rebecca A; Hossain, Amjad; Phelps, John Y

2010-07-01

The field of fertility is rapidly evolving, bringing opportunities for improvement in our patients' quality of life as well as bringing new ethical dilemmas. As medical science continues to advance, significant numbers of the reproductive-aged population are living with chronic and/or terminal conditions but have reasonable odds of lengthy survival and wish to have children. Likewise, there are adolescents diagnosed with cancer who are increasingly expected to achieve an improved, if not normal, life expectancy after treatment. Oftentimes these children are told they must sacrifice their ability to later have genetically related offspring; however, technologies to preserve fertility are changing this prognosis. Patients with chronic infection are living longer, more normal lives and are increasingly seeking reproductive assistance. Moreover, there is an increasing number of patients' families desiring posthumous use of gametes, which also raises ethical and legal issues. This article discusses ethical principles of bioethics and then highlights specific ethical issues through four plausible cases that may be seen in a fertility practice providing medical care to patients with chronic illness or terminal disease. It concludes that prompt referral of patients to the reproductive endocrinologist, along with a multidisciplinary approach to care, provides increased chances of successful treatment of this group of patients. Thieme Medical Publishers.

Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study.

PubMed

Clayton, Josephine M; Butow, Phyllis N; Arnold, Robert M; Tattersall, Martin H N

2005-08-01

Discussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers. We conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants' narratives were analysed using qualitative methodology. Distinct content areas emerged for discussing end-of-life issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons' fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death. This paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.

Teaching Third-Year Medical Students how to Care for Terminally Ill Patients.

ERIC Educational Resources Information Center

Martin, Robert W.; Wylie, Norma

1989-01-01

A successful seven-day course offered to third-year medical students is an integrated program for teaching them how to deal with terminal illness. The course uses lectures, audiovisual aids, and group and individual sessions to enhance self-awareness and practical application of the material in a clinical setting. (Author/MSE)

Spiritual Well-being May Reduce the Negative Impacts of Cancer Symptoms on the Quality of Life and the Desire for Hastened Death in Terminally Ill Cancer Patients.

PubMed

Wang, Yin-Chih; Lin, Chia-Chin

2016-01-01

Spirituality is a central component of the well-being of terminally ill cancer patients. The aim of this study was to examine the mediating or moderating role of spiritual well-being in reducing the impact of cancer-related symptoms on quality of life and the desire for hastened death in terminally ill cancer patients. Eighty-five terminally ill cancer patients were assessed using the Taiwanese version of the M. D. Anderson Symptom Inventory, the Functional Assessment of Cancer Therapy-General, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being, the Beck Hopelessness Scale, and the Schedule of Attitudes Toward Hastened Death. Spiritual well-being was significantly negatively correlated with symptom severity (r = -0.46, P < .01). Symptom severity negatively correlated with quality of life (r = -0.54) and positively correlated with hopelessness (r = 0.51, P < .01) and the desire for hastened death (r = 0.61, P < .01). Spiritual well-being was a partial mediator and moderator between symptom severity and quality of life. Spiritual well-being was a partial mediator between symptom severity and the desire for hastened death. The meaning subscale of spiritual well-being was a more significant predictor of the desire for hastened death and quality of life than the faith subscale was. Spiritual well-being may reduce the negative impacts of cancer on quality of life and the desire for hastened death. Appropriate spiritual care may reduce the negative impact of severe cancer symptoms on quality of life and the desire for hastened death in terminally ill cancer patients.

A review on how meditation could be used to comfort the terminally ill.

PubMed

Ball, Michael Stephen; Vernon, Bryan

2015-10-01

Our objective was to review how meditation could comfort the terminally ill. Our methodology was a literature search, which included books, journals, papers in collections, and online databases. The main search engines employed were Google Scholar and the Durham University Library. The main databases consulted were the Christian Meditation Centre, Project Meditation, and Stress-Related Facts and Well-Being at Monash. We were specifically interested in data acquired from clinical and nonclinical trials. The arguments needed to be based on qualitative and quantitative scientific data. Papers were published between 1985 and 2014. We then subdivided the review into three subcategories: physical, emotional, and self-awareness. When reviewing each category, we put our results into tabular form. In each table, we noted the percentage of terminally ill patients (TIPs) and non-terminally ill patients (NTIPs), and whether meditation had comforted them. Our review demonstrated that there are many areas that have yet to be researched. First, very little work has been done on how meditation affects the physical health of TIPs, including such variables as blood pressure, chronic pain, and sleeping patterns. However, no research has been done on heart disease, hypertension, depression, among others. Second, virtually no research has been conducted on how meditation affects the mental health of TIPs. Notably neglected areas include anxiety, compliance, depression, and stress. Third, no research has been done on whether meditation increases self-awareness in TIPs. In each of these cases, most NTIPs reacted positively; however, no research has been done on why TIPs reacted differently. Our results demonstrate the need for further research on how meditation affects terminally ill patients. In turn, this would enrich the debate on whether meditation should be prescribed for the dying.

Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): validation of a scale to assess acceptance and struggle with terminal illness.

PubMed

Mack, Jennifer W; Nilsson, Matthew; Balboni, Tracy; Friedlander, Robert J; Block, Susan D; Trice, Elizabeth; Prigerson, Holly G

2008-06-01

The role of emotional acceptance of a terminal illness in end-of-life (EOL) care is not known. The authors developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision-making and care. The authors developed the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire to measure the extent to which patients with advanced cancer have a sense of peaceful acceptance of their terminal illness. The scale was administered to 160 patients with advanced cancer along with measures of other attributes that hypothetically are related to acceptance, including cognitive acceptance of terminal illness. EOL outcomes in 56 patients who died during the study also were examined. The 12-item PEACE questionnaire had 2 subscales: a 7-item Struggle With Illness subscale (Cronbach alpha = .81) and a 5-item Peaceful Acceptance subscale (alpha = .78). Both subscales were associated with patients' self-reported peacefulness (correlation coefficient [r] = 0.66 for acceptance [P <.0001]; r = -0.37 for struggle [P < .0001]). Struggle With Illness scores were associated with cognitive terminal illness acknowledgment (mean scores, 14.9 vs 12.4 for patients who were not aware that their illness was terminal; P = .001) and with some aspects of advance care planning (living will or healthcare proxy: mean scores, 13.9 vs 11.5; P = .02). In addition, among patients who had died, the use of a feeding tube at the EOL was associated inversely with Peaceful Acceptance (P = .015). The current study indicated that the PEACE questionnaire is a valid and reliable measure of peaceful acceptance and struggle with illness. Scores were associated with some choices for EOL care among patients with advanced cancer. (c) 2008 American Cancer Society.

'Song of Life': music therapy in terminally ill patients with cancer.

PubMed

Warth, Marco; Kessler, Jens; van Kampen, Josien; Ditzen, Beate; Bardenheuer, Hubert J

2018-06-01

Music therapy (MT) holds a promising potential to meet emotional and existential needs in palliative care patients. The aim of the present pilot study was to assess the feasibility, acceptance and potential effectiveness of a novel MT intervention to improve life closure and spiritual well-being of terminally ill patients with cancer receiving palliative care. The 'Song of Life' (SOL) intervention was provided on two consecutive sessions containing a biographical interview and a live performance of a song with high biographical relevance to the patient in a lullaby style. Pre-to-post intervention assessments comprised brief self-report measures on life closure, well-being, stress, worry and pain. 13 out of 15 patients were able to complete the protocol as intended. The chosen songs were associated with a close person, an important place or event or with a religious belief. The results showed medium-sized improvements with regard to life closure, well-being, relaxation, worry and pain. 'SOL' proved to be a feasible and highly accepted intervention for patients approaching the end of their lives. Further consideration with regard to the procedures and outcomes is necessary before implementation of a randomised trial. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

The essence of spirituality of terminally ill patients.

PubMed

Chao, Co-Shi Chantal; Chen, Ching-Huey; Yen, Miaofen

2002-12-01

The purpose of this hermeneutic study was to investigate the essence of spirituality of terminally ill patients. In-depth unstructured interviews were used as the method for data collection. In the six-month period of data collection, the researcher was in the role of a hospice palliative care consultant who directly took care of the subject patients in a hospice ward of a teaching hospital. The six subjects were selected purposively according to various demographic backgrounds. Interview transcripts provided the data for analysis. The results were composed of four constitutive patterns and ten themes. The first constitutive pattern was "Communion with Self" which included three themes: (1) Self-identity--spirituality is the discovery of the authentic self. (2) Wholeness--a human being is full of contradictions but still in wholeness. (3) Inner peace--spirituality is negotiating conflicts for self-reconciliation. The second constitutive pattern was "Communion with others" which included two themes: (1) Love--spirituality is a caring relationship but not an over-attachment to others. (2) Reconciliation--spirituality is to forgive and to be forgiven. The third constitutive pattern was "Communion with Nature" which included two themes: (1) Inspiration from the nature--spirituality is the resonance of the marvelous beauty of nature. (2) Creativity--spirituality is conceiving imaginatively. The fourth constitutive pattern was "Communion with Higher Being" which included three themes: (1) Faithfulness--spirituality is keeping the trust dependably. (2) Hope--spirituality is claiming possibilities. (3) Gratitude--spirituality is giving thanks and embracing grace. The scientific rigor of this qualitative research as well as the strength and limitations of the study are reported. Implications for hospice palliative care and future research are recommended.

Family members' views on the benefits of harp music vigils for terminally-ill or dying loved ones.

PubMed

Ganzini, Linda; Rakoski, Alexa; Cohn, Sharilyn; Mularski, Richard A

2015-02-01

Music-thanatology is a palliative modality that uses harp and voice to provide bedside vigils, particularly for terminally ill or actively dying. We sought to determine the benefits of music vigils for terminally ill patients. Survey of 55 family members, whose terminally ill loved one experienced a music vigil during hospitalization, regarding effects on the patient's breathing, relaxation, comfort, pain and ability to sleep. Written comments on negative and positive results of the vigils were coded using content analysis. Family members perceived that the vigils resulted in modest improvement in the patients' breathing, relaxation, comfort, and ability to sleep, with fewer positive effects on pain, and almost no negative effects. Open ended comments focused on the positive benefit in increasing calm, relaxation, comfort. Comments on the positive effects for the family were almost as common as comments on the positive results for the patient. The use of music-vigils in palliative care should be investigated more extensively as our study supports that this intervention has benefits, almost no risk, minimal cost, and may improve patient-family experience of the dying process.

Integrated Care for the Terminally Ill: Variations in the Utilization of Formal Services.

ERIC Educational Resources Information Center

Meyers, Allan R.; And Others

1983-01-01

A review of 85 patients who received home care for terminal illness showed that a small proportion of patients use a relatively high volume of both in-patient and home care services. Data suggest that there are two dimensions of service utilization: a medical dimension and a social dimension. (Author/RC)

Economic impact of terminal illness and the willingness to change it.

PubMed

Emanuel, Natalia; Simon, Melissa Andrea; Burt, Michael; Joseph, Aneeja; Sreekumar, Nirmala; Kundu, Tapas; Khemka, Vivek; Biswas, Basudeb; Rajagopal, M R; Emanuel, Linda

2010-08-01

To gather pilot data on the economic impact of terminal illness on families and on the feasibility of training caregivers as a method of stemming illness-related poverty. Exploratory, descriptive study involving semistructured interviews with patient and caregiver dyads. Pallium India Palliative Care Clinic in Trivandrum, Kerala, India. Eleven patient-caregiver dyads (22 individual participants) visiting Pallium India in 2008. Trained interviewers conducted face-to-face interviews consisting of 114 questions with the patient and caregiver separately. Questions covered topics of economic impact of illness on household, family, and individual. Questions included if the illness had so impacted families that they needed to sell assets or significantly reduce work and/or schooling. All families reported that patients were obliged to give up work as a result of illness. In seven families, the caregiver also had to change work habits. All respondents stated illness had forced them to sell assets. Ten households reported that their children were obliged to miss school due to the illness. All respondents indicated they would use trained caregivers to help with the care burden if available. Nine respondents thought that use of trained caregivers would have reduced or prevented some of the household's illness-related change. Nine caregivers said they would be interested in becoming a trained caregiver. These data indicate that a definitive study would be feasible and would reveal how much assistance caregiver training could lend to household socio-economic resilience.

The Stigma of Dying: Attitudes Toward the Terminally Ill

ERIC Educational Resources Information Center

Epley, Rita J.; McCaghy, Charles H.

1978-01-01

Using a range of semantic differential adjectives, 233 college students indicated attitudes toward young and old people who were healthy, ill, or terminally ill. Attitudes toward each state of health category separate into three factors: attitudes toward healthy, ill, and dying persons. (Author)

Terminal illness and the increased mortality risk of conventional antipsychotics in observational studies: a systematic review.

PubMed

Luijendijk, Hendrika J; de Bruin, Niels C; Hulshof, Tessa A; Koolman, Xander

2016-02-01

Numerous large observational studies have shown an increased risk of mortality in elderly users of conventional antipsychotics. Health authorities have warned against use of these drugs. However, terminal illness is a potentially strong confounder of the observational findings. So, the objective of this study was to systematically assess whether terminal illness may have biased the observational association between conventional antipsychotics and risk of mortality in elderly patients. Studies were searched in PubMed, CINAHL, Embase, the references of selected studies and articles referring to selected studies (Web of Science). Inclusion criteria were (i) observational studies that estimated (ii) the risk of all-cause mortality in (iii) new elderly users of (iv) conventional antipsychotics compared with atypical antipsychotics or no use. Two investigators assessed the characteristics of the exposure and reference groups, main results, measured confounders and methods used to adjust for unmeasured confounders. We identified 21 studies. All studies were based on administrative medical and pharmaceutical databases. Sicker and older patients received conventional antipsychotics more often than new antipsychotics. The risk of dying was especially high in the first month of use, and when haloperidol was administered per injection or in high doses. Terminal illness was not measured in any study. Instrumental variables that were used were also confounded by terminal illness. We conclude that terminal illness has not been adjusted for in observational studies that reported an increased risk of mortality risk in elderly users of conventional antipsychotics. As the validity of the evidence is questionable, so is the warning based on it. Copyright © 2015 John Wiley & Sons, Ltd.

'To call it work somehow demeans it': the social construction of talk in the care of terminally ill patients.

PubMed

May, C

1995-09-01

The nurse has an important role in helping the terminally ill patient come to terms with the imminence of death. Such work is highly demanding and often stressful, but is work which is accorded a high moral priority by respondents in the study reported in this paper. The paper explores the ways in which nurses work to respond to patients' expressed psychosocial problems and the emphasis that they placed on providing opportunities for patients to speak about their impending death.

A Structured Approach to End-of-Life Decision Making Improves Quality of Care for Patients With Terminal Illness in a Teaching Hospital in Ghana.

PubMed

Edwin, Ama Kyerewaa; Johnson McGee, Summer; Opare-Lokko, Edwina Addo; Gyakobo, Mawuli Kotope

2016-03-01

To determine whether a structured approach to end-of-life decision-making directed by a compassionate interdisciplinary team would improve the quality of care for patients with terminal illness in a teaching hospital in Ghana. A retrospective analysis was done for 20 patients who consented to participate in the structured approach to end-of-life decision-making. Twenty patients whose care did not follow the structured approach were selected as controls. Outcome measures were nociceptive pain control, completing relationships, and emotional response towards dying. These measures were statistically superior in the study group compared to the control group. A structured approach to end-of-life decision-making significantly improves the quality of care for patients with terminal illness in the domains of pain control, completing relationships and emotional responses towards dying. © The Author(s) 2014.

Perceptions of terminally ill patients and family members regarding home and hospice as places of care at the end of life.

PubMed

Luijkx, K G; Schols, J M G A

2011-09-01

To enable demand-based palliative care, it is important to know the perceptions of terminally ill patients and their family members regarding home and hospice as places of care at the end of life. Eight women and five men suffering from cancer and with a life expectancy of 3 months or less were interviewed. In each case one of the family members was also interviewed. Four patients spent their last phase of life at home, nine in a hospice. This paper provides further insight in the patient perspective in palliative care. The results reveal that a cohabiting partner seems an important prerequisite for terminally ill patients to stay at home. For spouses it is an obvious choice to facilitate the patients' stay at home, even when it becomes too demanding, something not discussed between spouse and patient. When sufficient care at home seems impossible and the negotiation between patients and family members results in the opinion that living at home is no longer an option, it is decided that the patient moves to a hospice. The choice for the specific setting of the patients' new residence seems to be random; one possibility is pointed out to them and seems appropriate. © 2010 Blackwell Publishing Ltd.

Health Care Reform and Concurrent Curative Care for Terminally Ill Children: A Policy Analysis

PubMed Central

Lindley, Lisa C.

2012-01-01

Within the Patient Protection and Affordable Care Act of 2010 or health care reform, is a relatively small provision about concurrent curative care that significantly affects terminally ill children. Effective on March 23, 2010, terminally ill children, who are enrolled in a Medicaid or state Children’s Health Insurance Plans (CHIP) hospice benefit, may concurrently receive curative care related to their terminal health condition. The purpose of this article was to conduct a policy analysis of the concurrent curative care legislation by examining the intended goals of the policy to improve access to care and enhance quality of end of life care for terminally ill children. In addition, the policy analysis explored the political feasibility of implementing concurrent curative care at the state-level. Based on this policy analysis, the federal policy of concurrent curative care for children would generally achieve its intended goals. However, important policy omissions focus attention on the need for further federal end of life care legislation for children. These findings have implications nurses. PMID:22822304

Unfinished Business in Families of Terminally Ill With Cancer Patients.

PubMed

Yamashita, Ryoko; Arao, Harue; Takao, Ayumi; Masutani, Eiko; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho; Miyashita, Mitsunori

2017-12-01

Unfinished business often causes psychological issues after bereavement. Providing care for families of terminally ill patients with cancer to prevent unfinished business is important. To clarify the prevalence and types of unfinished business in families of end-of-life patients with cancer admitted to palliative care units (PCUs), explore depression and grief associated with unfinished business, and explore the factors affecting unfinished business. We conducted a cross-sectional, anonymous, self-report questionnaire survey with 967 bereaved families of patients with cancer admitted to PCUs. The questionnaire assessed the presence or the absence of unfinished business, content of unfinished business, depression, grief, process of preparedness, condition of the family and patient, and the degree of involvement of health care professionals. Questionnaires were sent to 967 families, and 73.0% responded. In total, 26.0% of families had some unfinished business, with improvement of the patient-family relationship being a common type of unfinished business. Families with unfinished business had significantly higher depression and grief scores after bereavement compared with those without. Factors that influenced the presence or the absence of unfinished business were preparedness for the patient's death (P = 0.001), discussion between the patient and family about the disease trajectory and way to spend daily life (P < 0.001), good patient-family relationship (P = 0.011), and family and health care professionals considering together the appropriate timing to accomplish the family's wishes (P = 0.021). Many families have unfinished business. Health care professionals should coordinate the appropriate timing for what the family wishes to do, with consideration of family dynamics, including the family's preparedness, communication pattern, and relationships. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights

Associations of prognostic awareness/acceptance with psychological distress, existential suffering, and quality of life in terminally ill cancer patients' last year of life.

PubMed

Tang, Siew Tzuh; Chang, Wen-Cheng; Chen, Jen-Shi; Chou, Wen-Chi; Hsieh, Chia-Hsun; Chen, Chen H

2016-04-01

Whether prognostic awareness benefits terminally ill cancer patients' psychological-existential well-being and quality of life (QOL) is unclear because of lack of well-controlled longitudinal studies. This study longitudinally evaluated the associations of accurate prognostic awareness and prognostic acceptance with psychological distress, existential suffering, and QOL while comprehensively controlling for confounders in Taiwanese terminally ill cancer patients' last year of life. A convenience sample of 325 cancer patients was followed until death. Psychological distress and existential suffering were assessed by severe anxiety and depressive symptoms and high self-perceived sense of burden to others, respectively. Dichotomized and continuous (QOL) outcome variables were evaluated by multivariate logistic and linear regression modeling with the generalized estimating equation, respectively. Accurate prognostic awareness was not associated with the likelihood of severe anxiety or depressive symptoms but significantly increased the likelihood of high self-perceived sense of burden to others and was associated with poorer QOL in participants' last year of life. Participants who knew and highly accepted their prognosis were significantly less likely to experience severe anxiety symptoms than those who were unaware of or knew their prognosis but had difficulty accepting it. Knowing one's poor prognosis and confronting one's impending death without full acceptance and adequate professional psycho-spiritual support may harm more than benefit terminally ill cancer patients' psychological state, existential well-being, and QOL. These findings highlight the importance of tailoring psycho-spiritual support to cancer patients' psychological and existential needs when prognostic information is disclosed. Copyright © 2015 John Wiley & Sons, Ltd.

Creating the final conversations scale: a measure of end-of-life relational communication with terminally ill individuals.

PubMed

Generous, Mark Alan; Keeley, Maureen P

2014-01-01

Final conversations (FCs) are defined as the communicative interactions, both verbal and nonverbal, that occur between terminally ill patients and relational partners. In this study, the "Final Conversations Scale" was developed and tested. A total of 152 participants that had engaged in final conversations with individuals that were terminally ill completed the newly developed instrument. Factor analysis produced a five-factor structure, including: messages of spirituality/religion; expressions of love; proactive difficult relationship talk; everyday communication; and talk about illness/death. Participants' perceptions of the relational closeness and difficulty with the deceased significantly influenced the individuals' recalled frequency of FCs messages. Practical and scholarly implications focus on the needs of the family members regarding their communication with terminally ill individuals, as well as directions for future research with the FCs Scale.

Economic Impact of Terminal Illness and the Willingness to Change It

PubMed Central

Emanuel, Natalia; Simon, Melissa Andrea; Burt, Michael; Joseph, Aneeja; Sreekumar, Nirmala; Kundu, Tapas; Khemka, Vivek; Biswas, Basudeb; Rajagopal, M.R.

2010-01-01

Abstract Objective To gather pilot data on the economic impact of terminal illness on families and on the feasibility of training caregivers as a method of stemming illness-related poverty. Design Exploratory, descriptive study involving semistructured interviews with patient and caregiver dyads. Setting Pallium India Palliative Care Clinic in Trivandrum, Kerala, India. Participants Eleven patient–caregiver dyads (22 individual participants) visiting Pallium India in 2008. Methods Trained interviewers conducted face-to-face interviews consisting of 114 questions with the patient and caregiver separately. Questions covered topics of economic impact of illness on household, family, and individual. Questions included if the illness had so impacted families that they needed to sell assets or significantly reduce work and/or schooling. Results All families reported that patients were obliged to give up work as a result of illness. In seven families, the caregiver also had to change work habits. All respondents stated illness had forced them to sell assets. Ten households reported that their children were obliged to miss school due to the illness. All respondents indicated they would use trained caregivers to help with the care burden if available. Nine respondents thought that use of trained caregivers would have reduced or prevented some of the household's illness-related change. Nine caregivers said they would be interested in becoming a trained caregiver. Conclusion These data indicate that a definitive study would be feasible and would reveal how much assistance caregiver training could lend to household socio-economic resilience. PMID:20712463

Dignity-based approaches in the care of terminally ill patients.

PubMed

Thompson, Genevieve N; Chochinov, Harvey M

2008-03-01

Promoting dignified dying is an altruistic goal in palliative care. Until recently, what was meant by this construct was poorly understood. This review seeks to clarify what is meant by dignity at the end of life, what threatens dignity, and evidence of the domains that define dignity. A model of dignity is proposed from which interventions can be derived. A paucity of research exists exploring the concept of dignity. What can be gleaned from this work is that dignity is socially constructed and mediated in our relationships with others. Research has noted that self-perceived burden, depression, hopelessness, and 'the reflection patients see of themselves in the eye of the beholder' are intimately connected to one's notion of dignity. A model of dignity in the terminally ill has been developed that outlines three areas that are most influential in shaping dignity. Interventions such as dignity therapy and critical personal reflection are proposed as tools to promote dignity. Despite the fact that little research exists exploring the notion of dignity at the end of life, a robust model of dignity exists and is helpful in directing interventions aimed at improving care at the end of life.

Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): Validation of a scale to assess acceptance and struggle with terminal illness

PubMed Central

Mack, Jennifer W.; Nilsson, Matthew; Balboni, Tracy; Friedlander, Robert J.; Block, Susan D.; Trice, Elizabeth; Prigerson, Holly G.

2013-01-01

Objectives The role of emotional acceptance of a terminal illness in end-of-life (EOL) care is not known. We developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision-making and care. Methods We developed the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire to measure the extent to which patients with advanced cancer feel a sense of peaceful acceptance of their terminal illness. The scale was administered to 160 advanced cancer patients along with measures of other attributes hypothesized to be related to acceptance, including cognitive acceptance of terminal illness. EOL outcomes in 56 patients who died during the study were also examined. Results The 12-item PEACE questionnaire had two subscales: a 7-item Struggle with Illness (Cronbach's α =.81) and a 5-item Peaceful Acceptance (α = .78) subscale. Both subscales were associated with patients’ self-reported peacefulness (r=.66 for acceptance, P<.0001; r=−.37 for struggle, P<.0001.) Struggle with Illness scores were associated with cognitive terminal illness acknowledgement (mean scores 14.9 versus 12.4, P=.001) and some aspects of advance care planning (living will or health care proxy, mean scores 13.9 versus 11.5, P=.02). In addition, among patients who had died, use of a feeding tube at the EOL was inversely associated with Peaceful Acceptance (P=.015). Conclusion The PEACE questionnaire is a valid and reliable measure of Peaceful Acceptance and Struggle with Illness. Scores are associated with some choices for EOL care among patients with advanced cancer. PMID:18429006

Ultimate journey of the terminally ill

PubMed Central

Daneault, Serge; Lussier, Véronique; Mongeau, Suzanne; Yelle, Louise; Côté, Andréanne; Sicotte, Claude; Paillé, Pierre; Dion, Dominique; Coulombe, Manon

2016-01-01

Objective To better understand the role of hope among terminally ill cancer patients. Design Qualitative analysis. Setting A tertiary specialized cancer centre in Canada. Participants Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12). Methods Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred. Main findings Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life. Conclusion Approaches aimed at sustaining hope need to reflect that patients’ reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients’ perceptions and acceptance of their treatments. PMID:27521394

Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review.

PubMed

He Leow, Mabel Qi; Wai Chi Chan, Sally

from the JBI-MAStARI (Joanna Briggs Institute-Meta Analysis of Statistics Assessment and Review Instrument). Quantitative data were extracted from included papers using standardised data extraction tools from the JBI-MAStARI. Findings were presented in narrative form, as statistical pooling was not possible. Seven studies were included in the review. All the studies used a cross-sectional descriptive survey for the collection of data. Four main factors that influenced caregivers' perception of caregiving burden were identified: 1. Caregiver characteristics, 2. Patient characteristics, 3. Social support, and 4. Caregivers' personal protective resources. Caregiver characteristics, patient characteristics, social support, and attitude of caregiver towards the caregiving situation, were found to influence caregivers' perceived caregiving burden. Additional support is required for caregivers who are employed, known to have financial difficulties, caring for patient indicating symptom distress, and caring for a patient at the terminal stage (Level III). Future studies may attempt to develop a framework to identify factors that impact on caregiver burden. More studies on caregiver burden in males, caregiver burden of patients who were at the terminal stages of the various chronic illnesses should be explored.

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients.

PubMed

Rose, K E

1999-01-01

This article discusses issues relating to information arising from a qualitative study of the experiences of informal carers of terminally ill cancer patients. Qualitative data analysis, drawing on methods of literary criticism, revealed that information was a key area in carers' experience. The findings are presented in the context of needing to provide individualized care to every family and deal with information needs relating to the illness and prognosis. The question of who is in possession of what information is raised, and the effect that this can have on couples is discussed, together with the issue of false information which carers may receive. The discussion centres on the complexity of understanding carers' information needs and considers how these are affected by the context within which carers operate. The work of Glaser and Strauss on awareness contexts is discussed in this respect. Finally, the importance of the nurse's role as a sensitive mediator of information is considered.

Preparation for Counseling Adults with Terminal Illness: Personal and Professional Parallels

ERIC Educational Resources Information Center

Manis, Amie A.; Bodenhorn, Nancy

2006-01-01

This article presents a review of the literature on counseling adults with terminal illness, particularly the literature on the nature of preparation that counselors and other professionals who attend to the needs of adults with a terminal illness require. The authors review information and findings from philosophical, psychological, practical,…

Caregiver Grief in Terminal Illness and Bereavement: A Mixed-Methods Study

ERIC Educational Resources Information Center

Waldrop, Deborah P.

2007-01-01

Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression,…

Cardiopulmonary Resuscitation in Patients With Terminal Illness: An Evidence-Based Analysis.

PubMed

Sehatzadeh, S

2014-01-01

Cardiopulmonary resuscitation (CPR) was first introduced in 1960 for people who unexpectedly experience sudden cardiac arrest. Over the years, it became routine practice in all institutions to perform CPR for all patients even though, for some patients with fatal conditions, application of CPR only prolongs the dying process through temporarily restoring cardiac function. This analysis aims to systematically review the literature to provide an accurate estimate of survival following CPR in patients with terminal health conditions. A literature search was performed for studies published from January 1, 2004, until January 10, 2014. The search was updated monthly to March 1, 2014. Abstracts and full text of studies that met eligibility criteria were reviewed. Reference lists were also examined for any additional relevant studies not identified through the search. Cancer patients have lower survival rates following CPR than patients with conditions other than cancer, and cancer patients who receive CPR in intensive care units have one-fifth the rate of survival to discharge of cancer patients who receive CPR in general wards. While the meta-analysis of studies published between 1967 and 2005 reported a lower survival to discharge for cancer patients (6.2%), more recent studies reported higher survival to discharge or to 30-day survival for these patients. Higher survival rates in more recent studies could originate with more "do not attempt resuscitation" orders for patients with end-stage cancer in recent years. Older age does not significantly decrease the rate of survival following CPR while the degree, the type, and the number of chronic health conditions; functional dependence; and multiple CPRs (particularly in advanced age) do reduce survival rates. Emergency Medical Services response time have a significant impact on survival following out-of-hospital CPR. Survival after CPR depends on the severity of illness, type and number of health conditions, functional

Dying in hospital: Qualitative study among caregivers of terminally ill patients who are transferred to the emergency department.

PubMed

Pillet, Martin; Chassagne, Aline; Aubry, Régis

2018-05-01

Most people in France die in the hospital, even though a majority would like to die at home. These end-of-life hospital admissions sometimes occur in the emergency setting, in the hours preceding death. To understand the motives that incite main natural caregivers to transfer terminally ill patients at the end of life to the emergency department. A qualitative study was performed among caregivers of terminally ill patients receiving palliative care and living at home, and who died within 72hours of being admitted to the emergency department of the University Hospital of Besançon, France. Eight interviews were performed; average duration 48minutes. The caregivers described the difficult conditions of daily life, characterised by marked anguish about what the future might hold. Although they were aware that the patient was approaching the end of life, the caregivers did not imagine the death at all. The transfer to the emergency department was considered as a logical event, occurring in the continuity of the home care, and was not in any way criticised, even long after death had occurred. Overall, the caregivers had a positive opinion of how the end-of-life accompaniment went. Difficulty in imagining death at home is underpinned by its unpredictable nature, and by the accumulation of suffering and anguish in the caregiver. Hospital admission and medicalisation of death help to channel the caregiver's anguish. In order to improve end-of-life accompaniment, it is mandatory to make home management more reassuring for the patient and their family. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Beethoven's terminal illness and death.

PubMed

Mai, F M M

2006-10-01

There is dispute about the cause of Beethoven's death; alcoholic cirrhosis, syphilis, infectious hepatitis, lead poisoning, sarcoidosis and Whipple's disease have all been proposed. In this article all primary source documents related to Beethoven's terminal illness and death are reviewed. The documents include his letters, the report of his physician Andreas Wawruch, his Conversation Books, the autopsy report, and a new toxicological report of his hair. His terminal illness was characterised by jaundice, ascites, ankle oedema and abdominal pain. The autopsy data indicate that Beethoven had cirrhosis of the liver, and probably also renal papillary necrosis, pancreatitis and possibly diabetes mellitus. His lifestyle for at least the final decade of his life indicated that he overindulged in alcohol in the form of wine. Alcohol was by far the most common cause of cirrhosis at that period. Toxicological analysis of his hair showed that the level of lead was elevated. During the eighteenth and early nineteenth centuries, lead was added illegally to inexpensive wines to sweeten and refresh them. These findings strongly suggest that liver failure secondary to alcoholic cirrhosis, associated with terminal spontaneous bacterial peritonitis, was the cause of death. This was complicated in the end stages by renal failure. If the presence of endogenous lead was verified by analysis of Beethoven's skeletal remains, it would suggest that the lead was derived from wine that he drank. Lead poisoning may account for some of his end-of-life symptoms. There is little clinical or autopsy evidence that Beethoven suffered from syphilis.

Remaining Lifetime After Recognition of Terminal Illness Depends on Diagnosis: A Nationwide Population-Based Cohort Study.

PubMed

Bell, Cathrine; Nielsen, Mette K; Neergaard, Mette A; Guldin, Mai-Britt; Jensen, Anders B

2017-01-01

Timely recognition of the terminal phase of life will benefit patients and caregivers as it may facilitate advance care planning and support. The objective of this study was to investigate the remaining lifetime of patients entering a physician-assessed terminal phase and to analyze variation in remaining lifetime according to diagnosis and sociodemographic factors. Danish National Health Registers were used to establish a prospective cohort of adult patients formally registered with drug reimbursement due to terminal illness in 2012 and followed until June 2014. Of the 11,062 included patients, the median remaining lifetime was 55 days and 37% of the patients died within the first month. The majority suffered from cancer (89%). Patients with a noncancer disease had the shortest remaining lifetime (17 days), considerably shorter than patients with cancer (59 days). Patients with prostate cancer had the longest remaining lifetime (76 days), whereas those with hematologic cancer had the shortest among cancer patients (41 days). Compared with lung cancer patients, the probability of death within 30 days were higher for patients with noncancer disease and lower for those with prostate or colorectal cancer. Male gender and high age were associated with higher risk of dying within 30 days. This study found a median remaining lifetime of 55 days after recognition of terminal illness. Remaining lifetime differed between cancer and noncancer patients and according to age and gender. Increased attention should be directed toward timely recognition of the transition into the terminal phase, especially for patients with noncancer disease. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Interventions and decision-making at the end of life: the effect of establishing the terminal illness situation.

PubMed

Campos-Calderón, C; Montoya-Juárez, R; Hueso-Montoro, C; Hernández-López, E; Ojeda-Virto, F; García-Caro, M P

2016-11-07

Many 'routine' interventions performed in hospital rooms have repercussions for the comfort of the patient, and the decision to perform them should depend on whether the patient is identified as in a terminal phase. The aim of this study is to analyse the health interventions performed and decisions made in the last days of life in patients with advanced oncological and non-oncological illness to ascertain whether identifying the patient's terminal illness situation has any effect on these decisions. Retrospective study of the clinical histories of deceased patients in four hospitals in Granada (Spain) in 2010. Clinical histories corresponding to the last three months of the patient's life were reviewed. A total of 202 clinical histories were reviewed, 60 % of which were those of non-oncology patients. Opioid prescriptions (58.4 %), palliative sedation (35.1 %) and Do Not Resuscitate (DNR) orders (34.7 %) were the decisions most often reflected in the histories, and differences in these decisions were found between patients registered as terminal and those who were not registered as terminal. The most frequent interventions in the final 14 days and 48 h were parenteral hydration (96-83 %), peripheral venous catheter (90.1-82 %) and oxygen therapy (81.2-70.5 %). There were statistically significant differences between the patients who were registered as terminal and those not registered as terminal in the number of interventions applied in the final 14 days and 48 h (p = 0.01-p = 0.00) and in many of the described treatments. The recognition of a patient's terminal status in the clinical history conditions the decisions that are made and is generally associated with a lower number of interventions.

Judgments of laypersons and general practitioners on justifiability and legality of providing assistance to die to a terminally ill patient: a view from New Zealand.

PubMed

Mitchell, Kay; Glynn Owens, R

2004-07-01

As part of a larger study, four decisions related to a vignette scenario of the elective death of a terminally ill patient suffering intractable pain are examined (doctor supplying information and drugs, assisting patient to take the drugs, or administering a lethal injection). Judgments on justifiability and legality of actions were obtained from laypersons and general practitioners (GPs) in Auckland, New Zealand. The results show that over 72% of laypersons and over 30% of GPs judged all four actions justified. Despite illegality a significant number of laypersons and some doctors were unsure of the legal status of actions. The current law in New Zealand prohibiting physician-assisted death may not reflect judgments by the majority of laypersons or 30% of general practitioners on the justifiability of elective death options for a terminally ill patient with intractable pain. Judgments on justifiability may be related to confusion over the legality of actions.

Reciprocal empathy and working alliance in terminal oncological illness: the crucial role of patients' attachment style.

PubMed

Calvo, Vincenzo; Palmieri, Arianna; Marinelli, Sara; Bianco, Francesca; Kleinbub, Johann R

2014-01-01

Security of attachment is described as an inner resource that may also facilitate the adaptation of individuals during critical life adversity, even when facing end-stage illness and death. This study assessed the relation between attachment styles, patient-caregiver reciprocal empathy, and patient-physician working alliance, in the terminal phase of an oncological disease. We hypothesized that the attachment security of patients, as measured by the Relationship Questionnaire (RQ), is related to the reciprocal empathy with the caregiver, as measured by the Perception of Partner Empathy (PPE) questionnaire, and to the working alliance with the physician, as measured by the Working Alliance Inventory-Short Form (WAI-S). Thirty-seven end-stage cancer patients, their caregivers, and physicians participated in the study. The PPE and WAI-S were administered twice: immediately after the hospice recovery and a week later. Results showed a significant improvement in patient-caregiver empathy and in patient-physician alliance after a week at the hospice. Findings indicated that the patients' attachment style influenced their perception of reciprocal empathy with the caregiver and the working alliance with the physician. Patients with a secure attachment had a greater capacity to show empathic closeness with their caregivers and enjoyed a better working alliance with their physicians. Caregivers' attachment security, otherwise, did not show the same influence on empathy and alliance. Findings support the hypothesis that patients' attachment security plays a crucial role in the relation with their own caregiver and with the physician, even at the terminal phase. Theoretical and clinical implications of these findings are explored in the discussion.

Finding Boundaries Inside Prison Walls: Case Study of a Terminally Ill Inmate

ERIC Educational Resources Information Center

O'Connor, Mary-Frances

2004-01-01

The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing…

Cardiopulmonary Resuscitation in Patients With Terminal Illness: An Evidence-Based Analysis

PubMed Central

Sehatzadeh, S

2014-01-01

Background Cardiopulmonary resuscitation (CPR) was first introduced in 1960 for people who unexpectedly experience sudden cardiac arrest. Over the years, it became routine practice in all institutions to perform CPR for all patients even though, for some patients with fatal conditions, application of CPR only prolongs the dying process through temporarily restoring cardiac function. Objectives This analysis aims to systematically review the literature to provide an accurate estimate of survival following CPR in patients with terminal health conditions. Data Sources A literature search was performed for studies published from January 1, 2004, until January 10, 2014. The search was updated monthly to March 1, 2014. Review Methods Abstracts and full text of studies that met eligibility criteria were reviewed. Reference lists were also examined for any additional relevant studies not identified through the search. Results Cancer patients have lower survival rates following CPR than patients with conditions other than cancer, and cancer patients who receive CPR in intensive care units have one-fifth the rate of survival to discharge of cancer patients who receive CPR in general wards. While the meta-analysis of studies published between 1967 and 2005 reported a lower survival to discharge for cancer patients (6.2%), more recent studies reported higher survival to discharge or to 30-day survival for these patients. Higher survival rates in more recent studies could originate with more “do not attempt resuscitation” orders for patients with end-stage cancer in recent years. Older age does not significantly decrease the rate of survival following CPR while the degree, the type, and the number of chronic health conditions; functional dependence; and multiple CPRs (particularly in advanced age) do reduce survival rates. Emergency Medical Services response time have a significant impact on survival following out-of-hospital CPR. Conclusions Survival after CPR depends on

Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints.

PubMed

McHugh, Neil; van Exel, Job; Mason, Helen; Godwin, Jon; Collins, Marissa; Donaldson, Cam; Baker, Rachel

2018-02-01

Criteria used by the National Institute for Health and Care Excellence (NICE) to assess life-extending, end-of-life (EoL) treatments imply that health gains from such treatments are valued more than other health gains. Despite claims that the policy is supported by societal values, evidence from preference elicitation studies is mixed and in-depth research has shown there are different societal viewpoints. Few studies elicit preferences for policies directly or combine different approaches to understand preferences. Survey questions were designed to investigate support for NICE EoL guidance at national and regional levels. These 'Decision Rule' and 'Treatment Choice' questions were administered to an online sample of 1496 UK respondents in May 2014. The same respondents answered questions designed to elicit their agreement with three viewpoints (previously identified and described) in relation to provision of EoL treatments for terminally ill patients. We report the findings of these choice questions and examine how they relate to each other and respondents' viewpoints. The Decision Rule questions described three policies: DA - a standard 'value for money' test, applied to all health technologies; DB - giving special consideration to all treatments for terminal illnesses; and DC - giving special consideration to specific categories of treatments for terminal illnesses e.g. life extension (as in NICE EoL guidance) or those that improve quality-of-life (QoL). Three Treatment Choices were presented: TA - improving QoL for patients with a non-terminal illness; TB - extending life for EoL patients; and TC - improving QoL at the EoL. DC received most support (45%) with most respondents giving special consideration to EoL only when treatments improved QoL. The most commonly preferred treatment choices were TA (51%) and TC (43%). Overall, this study challenges claims about public support for NICE's EoL guidance and the focus on life extension at EoL and substantiates

The use of N-terminal pro-brain natriuretic Peptide to evaluate vascular disease in elderly patients with mental illness.

PubMed

Nilsson, Karin; Gustafson, Lars; Hultberg, Björn

2012-01-01

Serum N-terminal pro-brain natriuretic peptide (NT-proBNP) is regarded as a sensitive marker of cardiovascular disease. Vascular disease plays an important role in cognitive impairment. In 447 elderly patients with mental illness, serum NT-proBNP level and the presence or absence of vascular disease according to the medical record were used to categorize patients in different subgroups of vascular disease. Patients with vascular disease and elevated serum NT-proBNP level had a lower cognition level, shorter survival time, lower renal function and a higher percentage of pathological brain imaging than patients with vascular disease and normal NT-proBNP level. Thus, elevated serum NT-proBNP level might be helpful to detect patients who have a more severe cardiovascular disease.

Just caring: health care rationing, terminal illness, and the medically least well off.

PubMed

Fleck, Leonard M

2011-01-01

What does it mean to be a "just" and "caring" society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? That question is the focus of this essay. Put another way: relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? On the one hand, we might see the terminally ill as being among the "medically least well off" and therefore deserving very high priority. On the other hand, we might see them as squandering vast medical resources for marginal medical benefits, thereby denying needed resources to others who would benefit much more. We begin the essay by making a number of morally relevant distinctions with regard to the category of "being terminally ill." We note, given contemporary medicine, that individuals may be terminally ill several times in the course of a life. Not all such circumstances make equal just claims to needed health care. We also note that our conceptions of health care justice are ultimately incapable of making very fine-grained, morally justified rationing judgments in complex medical circumstances. We conclude that we must finally rely upon fair processes of rational democratic deliberation to articulate such judgments for our own future, possibly terminally ill selves, thereby undercutting the rhetoric of "death panels." © 2011 American Society of Law, Medicine & Ethics, Inc.

Intentions to work during terminal illness: an exploratory study of antecedent conditions.

PubMed

Westaby, James D; Versenyi, Andrea; Hausmann, Robert C

2005-11-01

Facing a terminal illness is an unimaginably difficult experience, yet many individuals intend to work despite their prognosis. However, research has not systematically examined the potential antecedents underlying such intentions. Using behavioral intention theory as an underlying framework, this study hypothesized that reasons for working (intrinsic and extrinsic), the will to live, disability severity, accessibility of travel, and age would predict intentions to work during terminal illness. A representative sample of medically diagnosed amyotrophic lateral sclerosis (a.k.a. Lou Gehrig's disease) patients with a mean life expectancy of approximately 3 years participated (mean age=57.8 years). Controlling for length of diagnosis, employment status, and demographic variables, results indicated that intrinsic reasons were particularly strong predictors of intentions, followed by age, disability severity, and accessibility of travel. Exploratory findings also indicated that behavioral intentions were positively related to future employment status, consistent with past theory. ((c) 2005 APA, all rights reserved).

Terminal Illness: Counseling with a Family Perspective

ERIC Educational Resources Information Center

Krieger, G. W.; Bascue, L. O.

1975-01-01

When facing terminal illness, the dying individual needs to accept death and his feelings about it, deal with potential isolation from friends and relatives, and find meaning in his remaining time. Family members need also to accept death. Family counseling offers a treatment method for responding to these needs. (Author)

Attachment style dimensions can affect prolonged grief risk in caregivers of terminally ill patients with cancer.

PubMed

Lai, Carlo; Luciani, Massimiliano; Galli, Federico; Morelli, Emanuela; Cappelluti, Roberta; Penco, Italo; Aceto, Paola; Lombardo, Luigi

2015-12-01

The aim of the present study was to evaluate the predictive role of attachment dimensions on the risk of prolonged grief. Sixty caregivers of 51 terminally ill patients with cancer who had been admitted in a hospice were selected. Caregivers were interviewed using Attachment Scale Questionnaire, Hamilton Depression Rating Scale, Hamilton Anxiety Rating Scale, and Prolonged Grief Disorder 12 (PG-12). The consort caregivers showed higher PG-12 level compared to the sibling caregivers. Anxiety, depression, need for approval, and preoccupation with relationships levels were significantly correlated with PG-12 scores. Female gender, high levels of depression, and preoccupation with relationships significantly predicted higher levels of prolonged grief risk. © The Author(s) 2014.

Sources of meaning in family caregivers of terminally ill patients supported by a palliative nursing care team: A naturalistic three-month cohort study.

PubMed

Valdés-Stauber, Juan; Lemaczyk, Rafael; Kilian, Reinhold

2018-06-01

ABSTRACTObjective:Our aim was to identify possible patterns of change or durability in sources of meaning for family caregivers of terminally ill patients after the onset of support at home by an outreach palliative nursing team during a three-month survey period. The Sources of Meaning and Meaning in Life Questionnaire (SoMe) was administered to 100 caregivers of terminally ill patients at four measurement timepoints: immediately before the onset of the palliative care (t0), and at 1 week, 1 month, and 3 months after t0. Time-dependent changes were assessed for the completed subsample (n = 24) by means of bivariate linear as well as quadratic regression models. Multivariate regressions with dimensions of meaning in life as dependent variables were performed for the whole sample by means of random-effects models: dependent variables changed over time (four timepoints), whereas regressors remained constant. No significant differences were found for psychosocial and clinical variables or for sources of meaning between the uncompleted and completed subsamples. Growth curve analyses revealed no statistically significant but tendentiously parabolic changes for any dimensions or for single sources of meaning. In multivariate models, a negative association was found between patient age, psychological burden of family caregivers, and changes in total SoMe score, as well as for the superordinate dimensions. According to our hypothesis, sources of meaning and meaning in life seem to remain robust in relatives caring for terminally ill family members during the three-month survey period. A parabolic development pattern of single sources of meaning indicates an adjustment process. An important limitation of our study is the small number of participants compared with larger multivariate models because of high dropout rates, primarily due to the death of three-quarters of the participants during the survey period.

Cultural diversity: family path through terminal illness.

PubMed

Baider, L

2012-04-01

In trying to comprehend a culture and its ways of structuring the world, much can be learned from addressing the manner in which intimate family relationships are ordered and family crises channeled toward care. A family's experience with illness cannot be considered in isolation from the cultural milieu in which it occurs. Family adaptation to cancer diagnosis is a continuous motion between many critical strata--a fragile oscillation between hope and desperation. Processes for optimal functioning and the well-being of members are seen to vary over time, as challenges unfold and families evolve across the life cycle and illness trajectory. The manner in which the healthcare system and family manage illness and terminal care is a particularly helpful window into the cultural, religious and traditional values of every family in a particular society.

Pain Control Research in the Terminally Ill.

ERIC Educational Resources Information Center

Levy, Michael H.

1988-01-01

Two main goals in the care of the terminally ill are to optimize the quality of their remaining life and to alleviate the distress of their survivors. Pain control research has contributed significantly to meeting those goals, but continued progress is needed in both basic studies and expanded applications of new techniques. (Author/NB)

Patients’ Experiences of Being a Burden on Family in Terminal Illness

PubMed Central

Johnson, Julia Overturf; Sulmasy, Daniel P.; Nolan, Marie T.

2009-01-01

Studies of persons with chronic and life-threatening illness have revealed a fear of being a burden on family. The purpose of this case study was to explore that concern in-depth in three persons with different terminal illnesses. Participants were part of a larger study of end-of-life decision making and were selected for this study because their illnesses are characterized by a steady decline in health (amyotrophic lateral sclerosis), a rapid decline (stage IV lung cancer), or an uncertain trajectory of decline (advanced heart failure). Content analysis of their interviews resulted in four themes: managing the burden, spirituality, supportive relationships, and planning for the future. Themes contained specific categories of thoughts, feelings, and actions related to fear of being a burden. These themes should be explored in greater depth in future larger studies of persons with terminal illness. PMID:19183701

[Dignity in the care of terminal ill and dying patients. Definitions and supportive interventions in palliative care].

PubMed

Mehnert, A; Schröder, A S; Puhlmann, K; Müllerleile, U; Koch, U

2006-11-01

Most patients, family members, health care professional as well as volunteers would agree that dignified care and being allowed to die with dignity are superior and unquestionable goals of palliative care. Although the majority of people have a more or less vague concept of dignity and despite its significance for palliative care, only a few empirical approaches to describe the sense of dignity from patients' and health care professionals' perspectives have been undertaken. However, individual descriptions of the dignity concept and definitions can serve as an impetus to improve the current palliative care practice by the development and evaluation of psychotherapeutic interventions for patients near the end of life and the allocation of resources. This article considers an internationally developed empirical-based model of dignity in severe and terminal ill patients by Chochinov et al. Furthermore, it illustrates the understanding of dignity as well as self-perceived exertions of influence on a patient's dignity from the perspective of health care professionals and volunteers. Psychotherapeutic interventions and strategies are introduced that can help conserve the sense of dignity of patients during palliative care.

Talking with a child about a parent's terminal illness

MedlinePlus

... gov/ency/patientinstructions/000848.htm Talking with a child about a parent's terminal illness To use the ... your child's anxiety. How to Talk to Your Child You may wonder when it is the right ...

42 CFR 418.22 - Certification of terminal illness.

Code of Federal Regulations, 2010 CFR

2010-10-01

... certification of terminal illness for each of the periods listed in § 418.21, even if a single election... certification. Certification will be based on the physician's or medical director's clinical judgment regarding... certification or recertification form, in addition to the physician's signature on the certification or...

Changes in health-related quality of life and quality of care among terminally ill cancer patients and survival prediction: Multicenter prospective cohort study.

PubMed

Lee, Myung Kyung; Lee, Woo Jin; Do, Young Rok; Lee, Keun Seok; Jung, Kyung Hae; Heo, Dae Seog; Kim, Sam Yong; Park, Sang Yoon; Jeong, Hyun Sik; Kang, Jung Hun; Kim, Si-Young; Park, Sook Ryun; Yun, Young Ho

2015-08-01

This study examined changes in health-related quality of life (HRQoL) and quality of care (QoC) as perceived by terminally ill cancer patients and a stratified set of HRQoL or QoC factors that are most likely to influence survival at the end of life (EoL). We administered questionnaires to 619 consecutive patients immediately after they were diagnosed with terminal cancer by physicians at 11 university hospitals and at the National Cancer Center in Korea. Subjects were followed up over 161.2 person-years until their deaths. We measured HRQoL using the core 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and QoC using the Quality Care Questionnaire-End of Life (QCQ-EoL). We evaluated changes in HRQoL and QoC issues during the first three months after enrollment, performing sensitivity analysis by using data generated via four methods (complete case analysis, available case analysis, the last observation carried forward, and multiple imputation). Emotional and cognitive functioning decreased significantly over time, while dyspnea, constipation, and pain increased significantly. Dignity-conserving care, care by healthcare professionals, family relationships, and QCQ-EoL total score decreased significantly. Global QoL, appetite loss, and Eastern Cooperative Oncology Group Performance Status (ECOG-PS) scores were significantly associated with survival. Future standardization of palliative care should be focused on assessment of these deteriorated types of quality. Accurate estimates of the length of life remaining for terminally ill cancer patients by such EoL-enhancing factors as global QoL, appetite loss, and ECOG-PS are needed to help patients experience a dignified and comfortable death.

Threatened with death but growing: changes in and determinants of posttraumatic growth over the dying process for Taiwanese terminally ill cancer patients.

PubMed

Tang, Siew Tzuh; Lin, Kuan-Chia; Chen, Jen-Shi; Chang, Wen-Cheng; Hsieh, Chia-Hsun; Chou, Wen-Chi

2015-02-01

Posttraumatic growth at end of life, a positive psychological consequence of dealing with a life crisis, may be catalyzed by the trauma of facing mortality. Studies on cancer patients' posttraumatic growth have overwhelmingly examined early-stage survivors. Of the few studies on advanced cancer patients, none anchored posttraumatic growth with the patient's death. Therefore, the purposes of this study were to describe longitudinal changes in and to identify determinants of posttraumatic growth over the dying process. A convenience sample of 313 cancer patients was recruited and followed until death. Posttraumatic growth was measured by the Posttraumatic Growth Inventory. Determinants were evaluated from sociodemographics, cancer characteristics, social context variables, and coping strategies using a multiple linear regression model. The dying process may be too threatening and stressful for cancer patients to experience profound posttraumatic growth as manifested by low Posttraumatic Growth Inventory scores (26.13 ± 21.59 to 40.33 ± 27.71 on a 0-105 scale) without significant changes as death approached. However, terminally ill cancer patients who were not defeated by the initial threat of death experienced posttraumatic growth. Patients were at risk for low-level posttraumatic growth if they were male, were non-middle aged, had low educational attainment, had a non-metastatic disease, recently recognized terminally ill status, had severe symptom distress, had high functional dependence and weak social support, and were unaware or had low acceptance of their prognosis. Interventions are needed to appropriately relieve symptom distress, facilitate functional independence, enhance social support, and improve prognostic awareness and acceptance to inspire positive changes for cancer patients at end of life. Copyright © 2014 John Wiley & Sons, Ltd.

Personal dignity in the terminally ill from the perspective of caregivers: a survey among trained volunteers and physicians.

PubMed

Albers, Gwenda; de Vet, Henrica C W; Pasman, H Roeline W; Deliens, Luc; Onwuteaka-Philipsen, Bregje D

2013-09-01

Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. The study is a survey questionnaire study. Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n=236) and end-of-life consultants (SCEN physicians; n=427). Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life. Overall, volunteers indicated items more frequently as influential to dignity and as problematic in maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items. It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity.

Death - whose decision? Euthanasia and the terminally ill

PubMed Central

Fraser, S.; Walters, J.

2000-01-01

In Australia and Oregon, USA, legislation to permit statutory sanctioned physician-assisted dying was enacted. However, opponents, many of whom held strong religious views, were successful with repeal in Australia. Similar opposition in Oregon was formidable, but ultimately lost in a 60-40% vote reaffirming physician-assisted dying. This paper examines the human dilemma which arises when technological advances in end-of-life medicine conflict with traditional and religious sanctity-of-life values. Society places high value on personal autonomy, particularly in the United States. We compare the potential for inherent contradictions and arbitrary decisions where patient autonomy is either permitted or forbidden. The broader implications for human experience resulting from new legislation in both Australia and Oregon are discussed. We conclude that allowing autonomy for the terminally ill, within circumscribed options, results in fewer ethical contradictions and greater preservation of dignity. Key Words: Physician-assisted suicide • voluntary euthanasia • patient autonomy • religious belief PMID:10786323

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

PubMed

Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

Preferred Place of Care and Death in Terminally Ill Patients with Lung and Heart Disease Compared to Cancer Patients.

PubMed

Skorstengaard, Marianne H; Neergaard, Mette A; Andreassen, Pernille; Brogaard, Trine; Bendstrup, Elisabeth; Løkke, Anders; Aagaard, Susanne; Wiggers, Henrik; Bech, Per; Jensen, Anders B

2017-11-01

The dual aim of this study is, first, to describe preferred place of care (PPOC) and preferred place of death (PPOD) in terminally ill patients with lung and heart diseases compared with cancer patients and second, to describe differences in level of anxiety among patients with these diagnoses. Previous research on end-of-life preferences focuses on cancer patients, most of whom identify home as their PPOC and PPOD. These preferences may, however, not mirror those of patients suffering from nonmalignant fatal diseases. The study was designed as a cross-sectional study. Eligible patients from the recruiting departments filled in questionnaires regarding sociodemographics, PPOC and PPOD, and level of anxiety. Of the 354 eligible patients, 167 patients agreed to participate in the study. Regardless of their diagnosis, most patients wished to be cared for and to die at home. Patients with cancer and heart diseases chose hospice as their second most common preference for both PPOC and PPOD, whereas patients with lung diseases chose nursing home and hospice equally frequent as their second most common preference. Regardless of their diagnosis, all patients had a higher level of anxiety than the average Danish population; patients with heart diseases had a much higher level of anxiety than patients with lung diseases and cancer. Patient preferences for PPOC and PPOD vary according to their diagnoses; tailoring palliative needs to patients' preferences is important regardless of their diagnosis.

Attitudes of Acutely Ill Patients Towards Euthanasia in Hong Kong

PubMed Central

Lam, R.C.S; Chien, Wai-Tong

2007-01-01

The global euthanasia debate by health care professionals has raised important ethical issues concerning the professional duties and responsibilities of nurses caring for terminal patients. The purpose of this study was to examine the attitudes of acutely ill patients towards the practice of euthanasia in Hong Kong. A modified form of the 23-item Questionnaire for General Household Survey scale was used. This cross-sectional survey study was conducted with a stratified sample of in-patients recruited from a wide variety of departments in a regional, acute general hospital. Seventy-seven out of 129 patients responded (59.7%) and a high proportion of patients agreed with the use of euthanasia in the following circumstances: ‘where they were a third party’, if ‘someone they loved’ was affected, or if ‘they themselves were the patient’. Of the 77 patients, 54 agreed with active euthanasia (70.1%) and 65 with passive (84.4%). The results also indicated that a few socio-demographic characteristics (such as age, gender and household income) statistically significantly correlated with patients’ attitudes towards euthanasia. These findings highlight that Chinese patients with acute illness generally accept the use of euthanasia. Further research on the attitudes and perceptions of patients towards the use of euthanasia is recommended, particularly in diverse groups of Chinese and Asian patients with acute or terminal illness. PMID:19319212

Pressure ulcers among terminally ill nursing home residents.

PubMed

Kayser-Jones, Jeanie; Kris, Alison E; Lim, Kyung-Choon; Walent, Ronald J; Halifax, Elizabeth; Paul, Steven M

2008-01-01

The purpose of this prospective, anthropological study was to describe and analyze the experiences and care of terminally ill nursing home residents who were admitted with or acquired pressure ulcers (PUs) after admission. Data were collected in two proprietary nursing homes. Participant observation, in-depth interviews, event analysis, and chart review were used to obtain data. A total of 64 (54.7%) of the 117 terminally ill residents in the study had PUs; 52 (81.3%) of whom died with PUs. The findings disclosed that the absence of family advocacy, inability to speak English, and inadequate staffing and lack of supervision, along with other previously reported risk factors, contributed to the development of PUs. Specifically, inadequate staffing and lack of supervision led to inadequate assistance at mealtime, infrequent repositioning, and inadequate continence care, which in turn led to weight loss, unrelieved pressure on bony prominences, and moist, irritated skin. The outcome was a high rate of residents dying with PUs. Knowledge of and attention to these risk factors can guide nurses in the prevention and management of PUs. Copyright 2008, SLACK Incorporated.

Clinical changes in terminally ill cancer patients and death within 48 h: when should we refer patients to a separate room?

PubMed

Hwang, In Cheol; Ahn, Hong Yup; Park, Sang Min; Shim, Jae Yong; Kim, Kyoung Kon

2013-03-01

There is scant research concerning the prediction of imminent death, and current studies simply list events "that have already occurred" around 48 h of the death. We sought to determine what events herald the onset of dying process using the length of time from "any change" to death. This is a prospective observational study with chart audit. Inclusion criteria were terminal cancer patients who passed away in a palliative care unit. The analysis was limited to 181 patients who had medical records for their final week. Commonly observed events in the terminally ill were determined and their significant changes were defined beforehand. We selected the statistically significant changes by multiple logistic regression analysis and evaluated their predictive values for "death within 48 h." The median age was 67 years and there were 103 male patients. After adjusting for age, sex, primary cancer site, metastatic site, and cancer treatment, multiple logistic regression analyses for association between the events and "death within 48 h" revealed some significant changes: confused mental state, decreased blood pressure, increased pulse pressure, low oxygen saturation, death rattle, and decreased conscious level. The events that had higher predictability for death within 48 h were decreased blood pressure and low oxygen saturation, and the positive and negative predictive values of their combination were 95.0 and 81.4%, respectively. The most reliable events to predict impending death were decreased blood pressure and low oxygen saturation.

Longitudinal changes and predictors of prolonged grief for bereaved family caregivers over the first 2 years after the terminally ill cancer patient's death.

PubMed

Tsai, Wei-I; Prigerson, Holly G; Li, Chung-Yi; Chou, Wen-Chi; Kuo, Su-Ching; Tang, Siew Tzuh

2016-05-01

A significant minority of bereaved caregivers experience prolonged grief. However, few longitudinal studies have examined prolonged grief, especially in an Asian context. We explored longitudinal changes and factors predicting prolonged grief in bereaved caregivers of terminally ill Taiwanese cancer patients. Observational, prospective, and longitudinal. Prolonged grief symptoms were measured with the PG-13 at 6, 13, 18, and 24 months postloss. A convenience sample of 493 caregivers (83.3% participation rate) of terminally ill cancer patients was recruited from a medical center in Taiwan. The prevalence of prolonged grief decreased significantly over time from the patient's death (7.73%, 1.80%, 2.49%, and 1.85% at 6, 13, 18, and 24 months postloss, respectively, p < 0.05 at all times in reference to 6 months postloss). Caregivers' likelihood of prolonged grief was significantly higher if they had severe preloss depressive symptoms, negatively perceived their relative's dying situation, and were poorly prepared for the patient's death. However, the likelihood of prolonged grief decreased significantly with greater perceived concurrent social support and subjective caregiving burden right before the patient's death. Prolonged grief in bereavement diminished over time and was predicted by modifiable factors before, during, and after bereavement. To facilitate bereavement adjustment and avoid prolonged grief, healthcare professionals should develop and provide at-risk caregivers with effective interventions starting when patients are still alive to improve their dying experience, to facilitate preparedness for the patient's forthcoming death, to alleviate caregivers' preloss depressive symptoms, and to enhance their perceived postloss social support. © The Author(s) 2015.

Patients With Hepatocellular Carcinoma Near the End of Life: A Longitudinal Qualitative Study of Their Illness Experiences.

PubMed

Hansen, Lissi; Rosenkranz, Susan J; Vaccaro, Gina M; Chang, Michael F

2015-01-01

In the United States, the incidence of hepatocellular carcinoma (HCC) is rising. For those diagnosed with terminal HCC, there is no curative treatment and duration of survival is typically 1 to 2 years. Research on illness and treatment experiences toward the end of life for patients with terminal HCC is limited. The aim of this study was to explore the illness experiences of patients with terminal HCC as they approached the end of life. This study used a prospective, longitudinal descriptive design. Interview data were collected from 14 patients once a month for up to 6 months, for a total of 45 interviews. Data were analyzed using conventional content analysis. Three major themes (illness perceptions, decision to start treatment, and navigating treatment over time) and 10 subthemes were identified that were reflected across time in all patient experiences. Patients faced challenges with symptom experiences, treatment decisions, and unmet information needs affecting their quality of life. Gaining knowledge about the challenges facing patients with HCC is crucial for designing interventions that optimize their quality of life. Healthcare professionals may improve the quality of life of patients with terminal HCC by eliciting patients' perceptions of their illness and treatment decisions, symptom experiences, and information needs as the disease progresses and providing symptom management and offering information tailored to their needs. Care for patients with HCC who are approaching the end of life should be multidisciplinary and include timely referral to palliative care.

Discussions of Life Expectancy and Changes in Illness Understanding in Patients With Advanced Cancer.

PubMed

Epstein, Andrew S; Prigerson, Holly G; O'Reilly, Eileen M; Maciejewski, Paul K

2016-07-10

Accurate illness understanding enables patients to make informed decisions. Evidence of the influence of prognostic discussions on the accuracy of illness understanding by patients would demonstrate the value of discussions. Recent and past oncology provider-patient discussions about prognosis/life expectancy were examined for their association with changes in illness understanding by patients. Patients (N = 178) with advanced cancers refractory to prior chemotherapy whom oncologists expected to die within 6 months were interviewed before and after a visit in which cancer restaging scan results were discussed. Illness understanding scores were the sum of four indicator variables: patient terminal illness acknowledgment, recognition of incurable disease status, knowledge of the advanced stage of the disease, and expectation to live months as opposed to years. Before the restaging scan visit, nine (5%) of 178 patients had completely accurate illness understanding (ie, correctly answered each of the four illness understanding questions). Eighteen patients (10%) reported only recent discussions of prognosis/life expectancy with their oncologists; 68 (38%) reported only past discussions; 24 (13%) reported both recent and past discussions; and 68 (38%) reported that they never had discussions of prognosis/life expectancy with their oncologists. After adjustment for potential confounders (ie, education and race/ethnicity), analysis identified significant, positive changes in illness understanding scores for patients in groups that reported recent only (least-squares mean change score, 0.62; 95% CI, 0.23 to 1.01; P = .002) and both recent and past (least-squares mean change score, 0.37; 95% CI, 0.04 to 0.70; P = 0.028) discussions of prognosis/life expectancy with their oncologists. Patients with advanced cancer who report recent discussions of prognosis/life expectancy with their oncologists come to have a better understanding of the terminal nature of their illnesses. �

Discussions of Life Expectancy and Changes in Illness Understanding in Patients With Advanced Cancer

PubMed Central

Epstein, Andrew S.; O’Reilly, Eileen M.; Maciejewski, Paul K.

2016-01-01

Purpose Accurate illness understanding enables patients to make informed decisions. Evidence of the influence of prognostic discussions on the accuracy of illness understanding by patients would demonstrate the value of discussions. Methods Recent and past oncology provider-patient discussions about prognosis/life expectancy were examined for their association with changes in illness understanding by patients. Patients (N = 178) with advanced cancers refractory to prior chemotherapy whom oncologists expected to die within 6 months were interviewed before and after a visit in which cancer restaging scan results were discussed. Illness understanding scores were the sum of four indicator variables: patient terminal illness acknowledgment, recognition of incurable disease status, knowledge of the advanced stage of the disease, and expectation to live months as opposed to years. Results Before the restaging scan visit, nine (5%) of 178 patients had completely accurate illness understanding (ie, correctly answered each of the four illness understanding questions). Eighteen patients (10%) reported only recent discussions of prognosis/life expectancy with their oncologists; 68 (38%) reported only past discussions; 24 (13%) reported both recent and past discussions; and 68 (38%) reported that they never had discussions of prognosis/life expectancy with their oncologists. After adjustment for potential confounders (ie, education and race/ethnicity), analysis identified significant, positive changes in illness understanding scores for patients in groups that reported recent only (least-squares mean change score, 0.62; 95% CI, 0.23 to 1.01; P = .002) and both recent and past (least-squares mean change score, 0.37; 95% CI, 0.04 to 0.70; P = 0.028) discussions of prognosis/life expectancy with their oncologists. Conclusion Patients with advanced cancer who report recent discussions of prognosis/life expectancy with their oncologists come to have a better understanding of the

Population pharmacodynamic modelling of midazolam induced sedation in terminally ill adult patients

PubMed Central

de Winter, Brenda C. M.; Masman, Anniek D.; van Dijk, Monique; Baar, Frans P. M.; Tibboel, Dick; Koch, Birgit C. P.; van Gelder, Teun; Mathot, Ron A. A.

2017-01-01

Aims Midazolam is the drug of choice for palliative sedation and is titrated to achieve the desired level of sedation. A previous pharmacokinetic (PK) study showed that variability between patients could be partly explained by renal function and inflammatory status. The goal of this study was to combine this PK information with pharmacodynamic (PD) data, to evaluate the variability in response to midazolam and to find clinically relevant covariates that may predict PD response. Method A population PD analysis using nonlinear mixed effect models was performed with data from 43 terminally ill patients. PK profiles were predicted by a previously described PK model and depth of sedation was measured using the Ramsay sedation score. Patient and disease characteristics were evaluated as possible covariates. The final model was evaluated using a visual predictive check. Results The effect of midazolam on the sedation level was best described by a differential odds model including a baseline probability, Emax model and interindividual variability on the overall effect. The EC50 value was 68.7 μg l–1 for a Ramsay score of 3–5 and 117.1 μg l–1 for a Ramsay score of 6. Comedication with haloperidol was the only significant covariate. The visual predictive check of the final model showed good model predictability. Conclusion We were able to describe the clinical response to midazolam accurately. As expected, there was large variability in response to midazolam. The use of haloperidol was associated with a lower probability of sedation. This may be a result of confounding by indication, as haloperidol was used to treat delirium, and deliria has been linked to a more difficult sedation procedure. PMID:28960387

On the Edge of Life, I: Assessment of, Reaction to, and Management of the Terminally Ill Recorded in an Intensive Care Unit Journal

PubMed Central

Sekeres, Mikkael A.; Stern, Theodore A.

2002-01-01

Background: In a general hospital, few clinical settings match the intensity of the intensive care unit (ICU) experience. Clinical rotations in ICUs elicit and emphasize the struggles house officers face on a daily basis throughout their training. Method: These struggles were recorded by hundreds of residents in a journal maintained in the Massachusetts General Hospital's Medical ICU for the past 20 years. We systematically reviewed these unsolicited entries to define and to illustrate how house officers respond to caring for terminally ill patients. The 3 overarching topics that surfaced repeatedly were assessment of terminally ill patients, reaction to their prognosis, and management of their disease or their eventual demise. Results: House officers record affective reactions and cognitive assessments to cope with the stress and dysfunction associated with the care of the critically ill and to facilitate their management of these patients. Journal entries by residents reveal a deep concern for the welfare of their patients, conflict about the technological advances and limitations of the system, and reflection on how involved physicians should become with their patients. Conclusion: House officer journal entries reflect a combination of newly gained medical knowledge and coping strategies in managing terminally ill patients. House officers also demonstrate a deep concern for the welfare of their patients. Insight from years of reflection from past house officers can help prepare trainees and residency programs for the breadth and intensity of the ICU experience and for work in clinical practice settings that follow completion of training. PMID:15014705

The illness/non-illness model: hypnotherapy for physically ill patients.

PubMed

Navon, Shaul

2014-07-01

This article proposes a focused, novel sub-set of the cognitive behavioral therapy approach to hypnotherapy for physically ill patients, based upon the illness/non-illness psychotherapeutic model for physically ill patients. The model is based on three logical rules used in differentiating illness from non-illness: duality, contradiction, and complementarity. The article discusses the use of hypnotic interventions to help physically ill and/or disabled patients distinguish between illness and non-illness in their psychotherapeutic themes and attitudes. Two case studies illustrate that patients in this special population group can be taught to learn the language of change and to use this language to overcome difficult situations. The model suggests a new clinical mode of treatment in which individuals who are physically ill and/or disabled are helped in coping with actual motifs and thoughts related to non-illness or non-disability.

Current approaches to helping children cope with a parent's terminal illness.

PubMed

Christ, Grace H; Christ, Adolph E

2006-01-01

Much has been learned about childhood bereavement in the last few decades as studies have increasingly focused on the direct interviewing of children about their recovery from the tragic loss of a parent. It has been shown that children do indeed mourn, although differently from adults. Important moderating and mediating variables have been identified that impact their recovery from the loss of a parent, which can be the focus of intervention. When death is expected, the terminal phase of an illness has been found to be particularly stressful for children, yet seldom investigated. Similarly, few studies have explored the impact of development on children's experience and expression of grief. We present research findings that clarify phases in children's experience during the terminal illness, hospital visits, the death, and its immediate aftermath, as well as how the parent is mourned and issues in longer term reconstitution. Variations in children's responses in these phases are described as they were experienced by 87 children from 3 different developmental groupings: 3 to 5 years, 6 to 8 years, and 9 to 11 years. Recommendations are suggested for parents and professionals about ways to understand and support children during the terminal illness, at the time of death, and during the phase of reconstitution.

Intentions in wishes to die: analysis and a typology – A report of 30 qualitative case studies of terminally ill cancer patients in palliative care

PubMed Central

Ohnsorge, K; Gudat, H; Rehmann-Sutter, C

2014-01-01

Objective To investigate the variations in and intentions of wishes to die (WTD) of palliative care cancer patients. Methods Thirty terminally ill cancer patients, their caregivers and relatives in a hospice, an oncology palliative care ward of a general hospital, and an outpatient palliative care service. 116 semistructured qualitative interviews analyzed by a combined approach using Grounded Theory and Interpretive Phenomenological Analysis. Results A WTD is dynamic and interactive. Its subjective phenomenology can be described by three aspects: intentions, motivations, and interactions. In this article, we present a typology of the possible intentions. We identified nine different (ideal) types of intentions that WTD statements might have, other than wishing to live and accepting death. Many WTD statements do not imply a desire to hasten death. The intentions of statements differ according to whether a WTD is related to as imaginary or as an action. Often WTD statements contain several partial wishes, which can be in tension with each other and form a dynamic, sometimes unstable equilibrium. Conclusions Terminally ill persons' WTD statements differ in their intention, and deeper knowledge about these differences is ethically relevant. PMID:24706488

Recruiting terminally ill patients into non-therapeutic oncology studies: views of health professionals.

PubMed

Kleiderman, Erika; Avard, Denise; Black, Lee; Diaz, Zuanel; Rousseau, Caroline; Knoppers, Bartha Maria

2012-12-05

Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at all, or should be greatly restricted, while some proponents doubt whether such restrictions are appropriate. Our objective was to explore clinician-researcher attitudes and concerns when recruiting patients who are in advanced stages of cancer into non-therapeutic research. We conducted a qualitative exploratory study by carrying out open-ended interviews with health professionals, including physicians, research nurses, and study coordinators. Interviews were audio-recorded and transcribed. Analysis was carried out using grounded theory. The analysis of the interviews unveiled three prominent themes: 1) ethical considerations; 2) patient-centered issues; 3) health professional issues. Respondents identified ethical issues surrounding autonomy, respect for persons, beneficence, non-maleficence, discrimination, and confidentiality; bringing to light that patients contribute to science because of a sense of altruism and that they want reassurance before consenting. Several patient-centered and health professional issues are having an impact on the recruitment of patients for non-therapeutic research. Facilitators were most commonly associated with patient-centered issues enhancing communication, whereas barriers in non-therapeutic research were most often professionally based, including the doctor-patient relationship, time constraints, and a lack of education and training in research. This paper aims to contribute to debates on the overall

Impact of palliative care consultative service on disease awareness for patients with terminal cancer.

PubMed

Chou, Wen-Chi; Hung, Yu-Shin; Kao, Chen-Yi; Su, Po-Jung; Hsieh, Chia-Hsun; Chen, Jen-Shi; Liau, Chi-Ting; Lin, Yung-Chang; Liaw, Chuang-Chi; Wang, Hung-Ming

2013-07-01

Awareness of the status of disease among terminally ill cancer patients is an important part of the end-of-life care. We have evaluated how palliative care consultative service (PCCS) affects patient disease awareness and determined who may benefit from such services in Taiwan. In total, 2,887 terminally ill cancer patients consecutively received PCCS between January 2006 and December 2010 at a single medical center in Taiwan, after which they were evaluated for disease awareness. At the beginning of PCCS, 31 % of patients (n = 895) were unaware of their disease status. The characteristics of these 895 patients were analyzed retrospectively to determine variables pertinent to patient disease awareness after PCCS. In total, 485 (50 %) of the 895 patients became aware of their disease at the end of PCCS. Factors significantly associated with higher disease awareness included a longer interval between the date of hospital admission and that of PCCS referral (>4 weeks versus ≤2 weeks), a longer duration of PCCS (>14 days versus ≤7 days), the male gender, divorced marital status (versus married), and family awareness (versus lack of family awareness). Lower disease awareness was associated with older age (age > 75 years versus age = 18-65 years), referral from non-oncology departments, and primary cancer localization (lung, colon-rectum, or urological versus liver). Disease awareness is affected by multiple factors related to the patients, their families, and the clinicians. The promotion of PCCS increased disease awareness among terminally ill cancer patients in Taiwan.

Contending with advanced illness: patient and caregiver perspectives.

PubMed

Meeker, Mary Ann; Waldrop, Deborah P; Schneider, Jaclyn; Case, Amy A

2014-05-01

Despite improvements in end-of-life care, some unrelieved suffering persists for patients with advanced illness and their family members. Hospice and palliative care services can reduce suffering, but these services remain under-used. To investigate how patients with advanced illness and their primary caregivers experienced and responded to health care needs and decision making and how some dyads moved toward comfort-focused care. This was a qualitative study using the grounded theory method for sample selection, data collection, and analysis. Dyadic semi-structured interviews were audio-recorded and transcribed for analysis. Twenty-two participants, 12 patients and 10 family surrogates, provided 16 interviews for this study. Participants engaged in a process of contending with advanced illness. The major phases comprising this process were suffering, struggling, and settling. Struggling included enduring the experience and fighting the illness. During the phase of settling, the focus shifted away from curative efforts and toward supportive care. Conditions that facilitated the movement into this phase included receiving clear and consistent information about the patient's health status, trusting health care providers, having attended to advance care planning in some form, and being aware of and able to acknowledge the terminal nature of the illness. Findings from this pilot study offer a preliminary theoretical model to enhance the understanding of patient and family caregiver needs during advanced illness. Awareness of their perspective can inform the timing and content of clinicians' communication and interventions. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Understanding death with limited experience in life: dying children's and adolescents' understanding of their own terminal illness and death.

PubMed

Bates, Alan T; Kearney, Julia A

2015-03-01

An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients' ability to develop an understanding. It also reviews sources of insight into pediatric patients' understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.

Qualitative Study on the Perceptions of Terminally Ill Cancer Patients and Their Family Members Regarding End-of-Life Experiences Focusing on Palliative Sedation.

PubMed

Eun, Young; Hong, In-Wha; Bruera, Eduardo; Kang, Jung Hun

2017-06-01

Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication. To explore patient experiences regarding end-of-life status and PS. The study was performed between October and December, 2013 with eligible terminal cancer patients and their families in a non-religious, tertiary healthcare facility in Korea. Eligibility criteria were a hospitalized cancer patient with a life expectancy of less than three months and who had never experienced PS. Data were collected via face-to-face in-depth interviews and analyzed using the constant comparative method of qualitative analysis. Saturation was achieved after conducting interviews with 13 patients or care-giving family members. Enrolled patients raised the following issues: 1) simultaneously harboring the hope of prolonging life and wishing for a peaceful death, 2) experiencing difficulties in having honest conversations with caregivers regarding death, 3) possessing insufficient knowledge and information regarding PS, and 4) hoping for the decision on PS to be made before suffering becomes too great. Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Accurate Prognostic Awareness Facilitates, Whereas Better Quality of Life and More Anxiety Symptoms Hinder End-of-Life Care Discussions: A Longitudinal Survey Study in Terminally Ill Cancer Patients' Last Six Months of Life.

PubMed

Tang, Siew Tzuh; Chen, Chen Hsiu; Wen, Fur-Hsing; Chen, Jen-Shi; Chang, Wen-Cheng; Hsieh, Chia-Hsun; Chou, Wen-Chi; Hou, Ming-Mo

2018-04-01

Terminally ill cancer patients do not engage in end-of-life (EOL) care discussions or do so only when death is imminent, despite guidelines for EOL care discussions early in their disease trajectory. Most studies on patient-reported EOL care discussions are cross sectional without exploring the evolution of EOL care discussions as death approaches. Cross-sectional studies cannot determine the direction of association between EOL care discussions and patients' prognostic awareness, psychological well-being, and quality of life (QOL). We examined the evolution and associations of accurate prognostic awareness, functional dependence, physical and psychological symptom distress, and QOL with patient-physician EOL care discussions among 256 terminally ill cancer patients in their last six months by hierarchical generalized linear modeling with logistic regression and by arranging time-varying modifiable variables and EOL care discussions in a distinct time sequence. The prevalence of physician-patient EOL care discussions increased as death approached (9.2%, 11.8%, and 18.3% for 91-180, 31-90, and 1-30 days before death, respectively) but only reached significance in the last month. Accurate prognostic awareness facilitated subsequent physician-patient EOL care discussions, whereas better patient-reported QOL and more anxiety symptoms hindered such discussions. The likelihood of EOL care discussions was not associated with levels of physical symptom distress, functional dependence, or depressive symptoms. Physician-patient EOL care discussions for terminally ill Taiwanese cancer patients remain uncommon even when death approaches. Physicians should facilitate EOL care discussions by cultivating patients' accurate prognostic awareness early in their cancer trajectory when they are physically and psychologically competent, with better QOL, thus promoting informed and value-based EOL care decision making. Copyright © 2017 American Academy of Hospice and Palliative

When should managed care firms terminate private benefits for chronically mentally ill patients?

PubMed

Gerson, S N

1994-01-01

Corporate America's healthcare cost crisis and the country's budget deficit are forcing limits on the resources used to finance healthcare, including mental healthcare. At the same time, the 1990 Americans with Disabilities Act bars discrimination against patients with chronic illnesses, including chronic mental illness. Therefore, corporate benefits managers need guidance on how to ethically and rationally allocate scarce clinical resources to those high-morbidity insureds who utilize disproportionate amounts of these resources. In particular, how should we define the public/private interface: When do patients who repeatedly fail to respond to treatment fall out of the private sector's responsibility? The author, medical director for a leading behavioral healthcare utilization management company, offers the following guidelines recommending reasonable and practical limitations on trials of treatment for seven common categories of difficult psychiatric patients.

Ultimate journey of the terminally ill: Ways and pathways of hope.

PubMed

Daneault, Serge; Lussier, Véronique; Mongeau, Suzanne; Yelle, Louise; Côté, Andréanne; Sicotte, Claude; Paillé, Pierre; Dion, Dominique; Coulombe, Manon

2016-08-01

To better understand the role of hope among terminally ill cancer patients. Qualitative analysis. A tertiary specialized cancer centre in Canada. Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12). Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred. Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life. Approaches aimed at sustaining hope need to reflect that patients' reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients' perceptions and acceptance of their treatments. Copyright© the College of Family Physicians of Canada.

Three lessons from a randomized trial of massage and meditation at end of life: patient benefit, outcome measure selection, and design of trials with terminally ill patients.

PubMed

Downey, Lois; Engelberg, Ruth A; Standish, Leanna J; Kozak, Leila; Lafferty, William E

2009-01-01

Improving end-of-life care is a priority in the United States, but assigning priorities for standard care services requires evaluations using appropriate study design and appropriate outcome indicators. A recent randomized controlled trial with terminally ill patients produced no evidence of benefit from massage or guided meditation, when evaluated with measures of global quality of life or pain distress over the course of patient participation. However, reanalysis using a more targeted outcome, surrogates' assessment of patients' benefit from the study intervention, suggested significant gains from massage-the treatment patients gave their highest preassignment preference ratings. The authors conclude that adding a menu of complementary therapies as part of standard end-of-life care may yield significant benefit, that patient preference is an important predictor of outcome, and that modifications in trial design may be appropriate for end-of-life studies.

Teachers' Knowledge and Support Systems Regarding Students with Terminal Illness

ERIC Educational Resources Information Center

Heller, Kathryn Wolff; Coleman, Mari Beth; Best, Sherwood J.; Emerson, Judith

2013-01-01

This study examined teachers' knowledge and support when working with students with terminal illness or having experienced a student death. One hundred and ninety teachers of students with physical or multiple disabilities responded to a 40 item questionnaire that was distributed nationally. Results indicated that teachers have greater knowledge…

For patients with terminal chronic illness, does more face-to-face time with a healthcare provider decrease aggressive end-of-life (EOL) care such as ICU admission, feeding tube placement, CPR, or intubation?

PubMed Central

Seaberg, Preston; Hamm, Robert M.; McCarthy, Laine H.

2016-01-01

Clinical Question For patients with terminal chronic illness, does more face-to-face time with a healthcare provider decrease aggressive end-of-life (EOL) care such as ICU admission, feeding tube placement, CPR, or intubation? Answer Inconclusive. Existing evidence does not provide a conclusive answer to this particular question. While multiple prospective, randomized, controlled trials demonstrate an association between increased patient-provider contact time and decreased aggressive EOL care, interventions in those studies contain multiple confounding elements that preclude isolation of the time factor from the other elements in the interventions. There is a need for research focusing on physician-patient communication time and EOL care. Level of Evidence for the Answer A Search Terms Terminal care, palliative care, terminal illness, communication, patient-provider relations, time factors, life support care, resuscitation orders, enteral nutrition Inclusion Criteria Systematic reviews, meta-analyses, and comparative studies published between 2008 and the current date comparing EOL care or EOL care preferences of patients who spend more face-to-face time with a healthcare provider to those of patients who spend less face-to-face time with a healthcare provider. Exclusion Criteria Studies that do not report the primary outcome of interest (EOL care or EOL care preferences) or that do not measure discussion time or provide interventions that include face-to-face discussion. PMID:25796765

Finding boundaries inside prison walls: case study of a terminally ill inmate.

PubMed

O'Connor, Mary-Frances

2004-01-01

The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing from existential therapy, the review of meaningful life events in the client's life clarifies current goals and the value of the current final stage of life. Ethical issues that arose are discussed, including pain management and compassionate release. Creative solutions to these ethical dilemmas were implemented through consideration of the overt and underlying goals of the inmate, the necessary rules and protocols of the prison, and in conjunction with professional codes of ethics.

Palliative pharmacological sedation for terminally ill adults.

PubMed

Beller, Elaine M; van Driel, Mieke L; McGregor, Leanne; Truong, Shani; Mitchell, Geoffrey

2015-01-02

Terminally ill people experience a variety of symptoms in the last hours and days of life, including delirium, agitation, anxiety, terminal restlessness, dyspnoea, pain, vomiting, and psychological and physical distress. In the terminal phase of life, these symptoms may become refractory, and unable to be controlled by supportive and palliative therapies specifically targeted to these symptoms. Palliative sedation therapy is one potential solution to providing relief from these refractory symptoms. Sedation in terminally ill people is intended to provide relief from refractory symptoms that are not controlled by other methods. Sedative drugs such as benzodiazepines are titrated to achieve the desired level of sedation; the level of sedation can be easily maintained and the effect is reversible. To assess the evidence for the benefit of palliative pharmacological sedation on quality of life, survival, and specific refractory symptoms in terminally ill adults during their last few days of life. We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2014, Issue 11), MEDLINE (1946 to November 2014), and EMBASE (1974 to December 2014), using search terms representing the sedative drug names and classes, disease stage, and study designs. We included randomised controlled trials (RCTs), quasi-RCTs, non-RCTs, and observational studies (e.g. before-and-after, interrupted-time-series) with quantitative outcomes. We excluded studies with only qualitative outcomes or that had no comparison (i.e. no control group or no within-group comparison) (e.g. single arm case series). Two review authors independently screened titles and abstracts of citations, and full text of potentially eligible studies. Two review authors independently carried out data extraction using standard data extraction forms. A third review author acted as arbiter for both stages. We carried out no meta-analyses due to insufficient data for pooling on any outcome; therefore, we reported

Fear of Death, Mortality Communication, and Psychological Distress among Secular and Religiously Observant Family Caregivers of Terminal Cancer Patients

ERIC Educational Resources Information Center

Bachner, Yaacov G.; O'Rourke, Norm; Carmel, Sara

2011-01-01

Previous research suggests that caregivers and terminally ill patients face substantial difficulties discussing illness and death. Existing research, however, has focused primarily on the experience of patients. The current study compared responses as well as the relative strength of association between mortality communication, fear of death, and…

When Terminal Illness Is Worse Than Death: A Multicenter Study of Health-Care Providers' Resuscitation Desires.

PubMed

Chavez, Luis O; Einav, Sharon; Varon, Joseph

2017-11-01

To investigate how a terminal illness may affect the health-care providers' resuscitation preferences. We conducted a cross-sectional survey in 9 health-care institutions located in 4 geographical regions in North and Central America, investigating attitudes toward end-of-life practices in health-care providers. Statistical analysis included descriptive statistics and χ 2 test for the presence of associations ( P < 0.05 being significant) and Cramer V for the strength of the association. The main outcome measured the correlation between the respondents' present code status and their preference for cardiopulmonary resuscitation (CPR) in case of terminal illness. A total of 852 surveys were completed. Among the respondents, 21% (n = 180) were physicians, 36.9% (n = 317) were nurses, 10.5% (n = 90) were medical students, and 265 participants were other staff members of the institutions. Most respondents (58.3%; n = 500) desired "definitely full code" (physicians 73.2%; n = 131), only 13.8% of the respondents (physicians 8.33%; n = 15) desired "definitely no code" or "partial support," and 20.9% of the respondents (n = 179; among physicians 18.4%; n = 33) had never considered their code status. There was an association between current code status and resuscitation preference in case of terminal illness ( P < .001), but this association was overall quite weak (Cramer V = 0.180). Subgroup analysis revealed no association between current code status and terminal illness code preference among physicians ( P = .290) and nurses ( P = .316), whereupon other hospital workers were more consistent ( P < .01, Cramer V = .291). Doctors and nurses have different end-of-life preferences than other hospital workers. Their desire to undergo CPR may change when facing a terminal illness.

Effect of dignity therapy on end-of-life psychological distress in terminally ill Portuguese patients: A randomized controlled trial.

PubMed

Julião, Miguel; Oliveira, Fátima; Nunes, Baltazar; Carneiro, António Vaz; Barbosa, António

2017-12-01

Dignity therapy (DT) is a brief form of psychotherapy developed for patients living with a life-limiting illness that has demonstrated efficacy in treating several dimensions of end-of-life psychological distress. Our aim was to determine the influence of DT on demoralization syndrome (DS), the desire for death (DfD), and a sense of dignity (SoD) in terminally ill inpatients experiencing a high level of distress in a palliative care unit. A nonblinded phase II randomized controlled trial was conducted with 80 patients who were randomly assigned to one of two groups: the intervention group (DT + standard palliative care [SPC]) or the control group (SPC alone). The main outcomes were DS, DfD, and SoD, as measured according to DS criteria, the Desire for Death Rating Scale, and the Patient Dignity Inventory (PDI), respectively. All scales were assessed at baseline (day 1) and at day 4 of follow-up. This study is registered with http://www.controlled-trials.com/ISRCTN34354086. Of the 80 participants, 41 were randomized to DT and 39 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in DS compared with SPC (DT DS prevalence = 12.1%; SPC DS prevalence = 60.0%; p < 0.001). Similarly, DT was associated with a significant decrease in DfD prevalence (DT DfD prevalence = 0%; SPC DfD prevalence = 14.3%; p = 0.054). Compared with participants allocated to the control group, those who received DT showed a statistically significant reduction in 19 of 25 PDI items. Dignity therapy had a beneficial effect on the psychological distress encountered by patients near the end of life. Our research suggests that DT is an important psychotherapeutic approach that should be included in clinical care programs, and it could help more patients to cope with their end-of-life experiences.

On withholding nutrition and hydration in the terminally ill: has palliative medicine gone too far?

PubMed Central

Craig, G M

1994-01-01

This paper explores ethical issues relating to the management of patients who are terminally ill and unable to maintain their own nutrition and hydration. A policy of sedation without hydration or nutrition is used in palliative medicine under certain circumstances. The author argues that this policy is dangerous, medically, ethically and legally, and can be disturbing for relatives. The role of the family in management is discussed. This issue requires wide debate by the public and the profession. PMID:7527863

Caregiver grief in terminal illness and bereavement: a mixed-methods study.

PubMed

Waldrop, Deborah P

2007-08-01

Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression, and trouble concentrating, remembering, and getting things done. Following the death, caregiver grief became a state of sustained reactivity: Overall distress was diminished and anxiety and hostility decreased significantly, but loneliness, sadness, and tears increased. Overwhelming responses were triggered by unforeseen visual or auditory reminders of the person. Sleep disturbances began during end-stage care and continued after the death. At both times, caregiver grief was highly influenced by the social context; relationships with family and friends (more cohesive versus conflicted) shaped responses. Social work practitioners can help caregivers who may be unaware they are experiencing grief to identify and integrate these normal responses to loss.

Educating medical students about the personal meaning of terminal illness using the film, "Wit".

PubMed

Ozcakir, Alis; Bilgel, Nazan

2014-08-01

Addressing the emotional needs of dying patients is rarely found to have a place in formal medical curriculum and is also a difficult area to teach through classical medical lectures. "Cinemeducation" is a wonderful way to educate health care providers about the magnitude of emotions that arise during those difficult situations. The aims of this study were to test the relevance and usefulness of the movie 'Wit' in teaching medical students about the personal meaning of terminal illness and to assess the impact of this teaching method on students' attitudes toward palliative care. This was an education study using qualitative and quantitative data analysis of 518 first-year medical students in a single medical faculty in Turkey. Students watched the entire film, filled out an evaluation questionnaire, and answered questions about the film. Students also expressed their own feelings and thoughts about palliative care. Overall, 88% rated the film as excellent, very good, or good. According to 54% of the students, the emotions of terminally ill patients were fully portrayed in the film and in a very realistic way. Approximately 61.4% of the students found this film emotional. Most students (80.5%) stated that this film made them think about the emotional and spiritual suffering that dying patients go through and found this learning approach about palliative care more useful than didactic lectures and journal article readings but not more useful than bedside rounds. It was thought that caring for dying patients would be very or fairly personally satisfying for 65.3% of the students. The film 'Wit' gave the students an opportunity to explore their beliefs, values and attitudes in terms of the bio-psycho-social-spiritual aspects of health care and encouraged them to think more about the humanitarian issues of the medical profession.

[A nursing experience of holistic care on total suffering of a patient with terminal illness].

PubMed

Yang, Wan-Ping; Lai, Wei-Shu; Chao, Co-Shi Chantal

2008-12-01

The purpose of this article was to describe a nursing experience using holistic care to relieve total suffering resulting from complex interactions amongst physical, psychological, social and spiritual aspects in a patient with terminal illness. Each aspect of problems was identified by means of direct participant care, observation, empathetic communication and holistic assessment. Such included: (1) physical aspect: distress caused by pain, nausea, vomiting and poor intake, infection and hypercalcaemia; (2) psychosocial aspect: caregiver's overwhelming burdens and financial concerns; (3) spiritual aspect: yearn for being with a higher-being and receiving unconditional love, pursuit of the meaning of suffering, proceed to the next stage to develop a unique care plan and nursing intervention program. Nursing goals were set up based on the patient's "life expectancy" represented by the hope for a painless and peaceful death. The author helped to provide unique, holistic and continued care for the purpose of humanity. The main nursing interventions included active control of symptoms, encouraging the expression of emotional distress, caring and emotional resonance with caregiver's overwhelming burdens, reconciling with a higher being through art therapy, pursuit of the meaning of suffering and sharing the darkness. This nursing experience of holistic care may be shared with other healthcare professionals and has been recorded as a positive response to the following quote from Dame Cicely Saunders: "The way care is given can reach the most hidden places and give space for unexpected development."

Transitions in Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life Examined by Multi-State Markov Modeling.

PubMed

Hsiu Chen, Chen; Wen, Fur-Hsing; Hou, Ming-Mo; Hsieh, Chia-Hsun; Chou, Wen-Chi; Chen, Jen-Shi; Chang, Wen-Cheng; Tang, Siew Tzuh

2017-09-01

Developing accurate prognostic awareness, a cornerstone of preference-based end-of-life (EOL) care decision-making, is a dynamic process involving more prognostic-awareness states than knowing or not knowing. Understanding the transition probabilities and time spent in each prognostic-awareness state can help clinicians identify trigger points for facilitating transitions toward accurate prognostic awareness. We examined transition probabilities in distinct prognostic-awareness states between consecutive time points in 247 cancer patients' last 6 months and estimated the time spent in each state. Prognostic awareness was categorized into four states: (a) unknown and not wanting to know, state 1; (b) unknown but wanting to know, state 2; (c) inaccurate awareness, state 3; and (d) accurate awareness, state 4. Transitional probabilities were examined by multistate Markov modeling. Initially, 59.5% of patients had accurate prognostic awareness, whereas the probabilities of being in states 1-3 were 8.1%, 17.4%, and 15.0%, respectively. Patients' prognostic awareness generally remained unchanged (probabilities of remaining in the same state: 45.5%-92.9%). If prognostic awareness changed, it tended to shift toward higher prognostic-awareness states (probabilities of shifting to state 4 were 23.2%-36.6% for patients initially in states 1-3, followed by probabilities of shifting to state 3 for those in states 1 and 2 [9.8%-10.1%]). Patients were estimated to spend 1.29, 0.42, 0.68, and 3.61 months in states 1-4, respectively, in their last 6 months. Terminally ill cancer patients' prognostic awareness generally remained unchanged, with a tendency to become more aware of their prognosis. Health care professionals should facilitate patients' transitions toward accurate prognostic awareness in a timely manner to promote preference-based EOL decisions. Terminally ill Taiwanese cancer patients' prognostic awareness generally remained stable, with a tendency toward developing

Trajectories of Terminally Ill Patients' Cardiovascular Response to Receptive Music Therapy in Palliative Care.

PubMed

Warth, Marco; Kessler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J

2016-08-01

Relaxation interventions are frequently used to promote symptom relief in palliative care settings, but little is known about the underlying mechanisms. The present analysis aimed at examining the psychophysiological pathways of terminally ill patients' cardiovascular response to a live music therapy vs. prerecorded mindfulness exercise. Eighty-four patients of a palliative care unit were randomly assigned to either of the two interventions. Multilevel modeling was used to analyze trajectories of physiological change. Vagally mediated heart rate variability (VM-HRV) and blood volume pulse amplitude (BVP-A) served as indices of autonomic nervous system response. Participants' gender, age, baseline scores, self-rated pain, and assignment to treatment were entered to the models as predictors. Both VM-HRV and BVP-A showed significant linear and quadratic trends over time, as well as substantial heterogeneity among individuals' trajectories. Baseline scores, pain, and treatment significantly accounted for random variation in VM-HRV intercepts. BVP-A levels were significantly higher in women than in men. Moreover, assignment to treatment significantly accounted for differences in the linear slopes of peripheral blood flow. Higher levels of VM-HRV in the music therapy group highlight the importance of a therapeutic relationship for the effectiveness of relaxation interventions in end-of-life care settings. Music therapy caused significantly stronger reductions of vascular sympathetic tone and, therefore, may be indicated in the treatment of pain and stress-related symptoms in palliative care. Initial self-ratings of pain moderated patients' physiological response and need to be taken into account in clinical practice and future theory building. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Informed consent of minors--emphasizing the terminally ill].

PubMed

Niv-Yagoda, Adi

2007-06-01

The article deals with the capacity of a minor about to undergo medical treatment to give informed consent, or the right to refuse and withhold such treatment. The paper discusses the applicability of the principles of The Patient's Rights Law to minors, in view of the provisions of the Legal Capacity and Guardianship Law, which categorically denies all minors the option to be involved in or participate in legal decisions, including those concerning their medical treatment. In view of the mental capacity of present day minors, and the principle on which informed consent is based, it seems that the "modern" minor's developing skills surpass those that were attributed to the minor in the 1960s, at the time when the Legal Capacity Law was enacted. It is suggested that it is our legal and moral obligation to modify the current legal state, as minors do not possess the right to participate in decisions concerning their own medical procedures, but for rare specific exceptions. This article was written in line with the practice adopted worldwide concerning the rights available to minors within the medical system, the United Nations Convention on the Rights of the Child, the Report of Judge Rotlevy's Commission and the Terminally Ill Patient Law. The paper attempts to generate a conceptual and cultural change in the attitude of the medical system towards the care of minors and their families.

Effects of dignity therapy on terminally ill patients: a systematic review.

PubMed

Donato, Suzana Cristina Teixeira; Matuoka, Jéssica Yumi; Yamashita, Camila Cristófero; Salvetti, Marina de Goés

2016-01-01

Analyzing the evidence of the effects of dignity therapy onterminally ill patients. A Systematic review of the literature conducted using the search strategy in six databases. Inclusion criteria were primary studies, excluding literature reviews (systematic or not) and conceptual articles. Ten articles were analyzed regarding method, results and evidence level. Dignity therapy improved the sense of meaning andpurpose, will to live, utility, quality of life, dignity and family appreciationin studies with a higher level of evidence. The effects are not well established in relation to depression, anxiety, spirituality and physical symptoms. Studies with a moderate to high level of evidence have shown increased sense of dignity, will to live and sense of purpose. Further studies should be developed to increase knowledge about dignity therapy. Analisar as evidências sobre os efeitos da terapia da dignidade para pacientes em fase terminal de vida. Revisão sistemática da literatura realizada em seis bases de dados na estratégia de busca. Os critérios de inclusão foram estudos primários, excluindo-se revisões da literatura (sistemáticas ou não) e artigos conceituais. Dez artigos foram analisados quanto ao método, aos resultados e nível de evidência. Nos estudos com maior nível de evidência, a terapia da dignidade melhorou o senso de significado, propósito, vontade de viver, utilidade, qualidade de vida, dignidade e apreciação familiar.Os efeitos não estão bem estabelecidos em relação à depressão, ansiedade, espiritualidade e aos sintomas físicos. Os estudos de nível de evidência de moderado a alto demonstraram aumento do senso de dignidade, vontade de viver e senso de propósito. Mais estudos devem ser desenvolvidos para ampliar o conhecimento sobre a terapia da dignidade.

Extensions to regret-based decision curve analysis: an application to hospice referral for terminal patients.

PubMed

Tsalatsanis, Athanasios; Barnes, Laura E; Hozo, Iztok; Djulbegovic, Benjamin

2011-12-23

Despite the well documented advantages of hospice care, most terminally ill patients do not reap the maximum benefit from hospice services, with the majority of them receiving hospice care either prematurely or delayed. Decision systems to improve the hospice referral process are sorely needed. We present a novel theoretical framework that is based on well-established methodologies of prognostication and decision analysis to assist with the hospice referral process for terminally ill patients. We linked the SUPPORT statistical model, widely regarded as one of the most accurate models for prognostication of terminally ill patients, with the recently developed regret based decision curve analysis (regret DCA). We extend the regret DCA methodology to consider harms associated with the prognostication test as well as harms and effects of the management strategies. In order to enable patients and physicians in making these complex decisions in real-time, we developed an easily accessible web-based decision support system available at the point of care. The web-based decision support system facilitates the hospice referral process in three steps. First, the patient or surrogate is interviewed to elicit his/her personal preferences regarding the continuation of life-sustaining treatment vs. palliative care. Then, regret DCA is employed to identify the best strategy for the particular patient in terms of threshold probability at which he/she is indifferent between continuation of treatment and of hospice referral. Finally, if necessary, the probabilities of survival and death for the particular patient are computed based on the SUPPORT prognostication model and contrasted with the patient's threshold probability. The web-based design of the CDSS enables patients, physicians, and family members to participate in the decision process from anywhere internet access is available. We present a theoretical framework to facilitate the hospice referral process. Further rigorous

Terminal weaning or immediate extubation for withdrawing mechanical ventilation in critically ill patients (the ARREVE observational study).

PubMed

Robert, René; Le Gouge, Amélie; Kentish-Barnes, Nancy; Cottereau, Alice; Giraudeau, Bruno; Adda, Mélanie; Annane, Djillali; Audibert, Juliette; Barbier, François; Bardou, Patrick; Bourcier, Simon; Bourenne, Jeremy; Boyer, Alexandre; Brenas, François; Das, Vincent; Desachy, Arnaud; Devaquet, Jérôme; Feissel, Marc; Ganster, Frédérique; Garrouste-Orgeas, Maïté; Grillet, Guillaume; Guisset, Olivier; Hamidfar-Roy, Rebecca; Hyacinthe, Anne-Claire; Jochmans, Sebastien; Jourdain, Mercé; Lautrette, Alexandre; Lerolle, Nicolas; Lesieur, Olivier; Lion, Fabien; Mateu, Philippe; Megarbane, Bruno; Merceron, Sybille; Mercier, Emmanuelle; Messika, Jonathan; Morin-Longuet, Paul; Philippon-Jouve, Bénédicte; Quenot, Jean-Pierre; Renault, Anne; Repesse, Xavier; Rigaud, Jean-Philippe; Robin, Ségolène; Roquilly, Antoine; Seguin, Amélie; Thevenin, Didier; Tirot, Patrice; Vinatier, Isabelle; Azoulay, Elie; Reignier, Jean

2017-12-01

The relative merits of immediate extubation versus terminal weaning for mechanical ventilation withdrawal are controversial, particularly regarding the experience of patients and relatives. This prospective observational multicentre study (ARREVE) was done in 43 French ICUs to compare terminal weaning and immediate extubation, as chosen by the ICU team. Terminal weaning was a gradual decrease in the amount of ventilatory assistance and immediate extubation was extubation without any previous decrease in ventilatory assistance. The primary outcome was posttraumatic stress symptoms (Impact of Event Scale Revised, IES-R) in relatives 3 months after the death. Secondary outcomes were complicated grief, anxiety, and depression symptoms in relatives; comfort of patients during the dying process; and job strain in staff. We enrolled 212 (85.5%) relatives of 248 patients with terminal weaning and 190 relatives (90.5%) of 210 patients with immediate extubation. Immediate extubation was associated with airway obstruction and a higher mean Behavioural Pain Scale score compared to terminal weaning. In relatives, IES-R scores after 3 months were not significantly different between groups (31.9 ± 18.1 versus 30.5 ± 16.2, respectively; adjusted difference, -1.9; 95% confidence interval, -5.9 to 2.1; p = 0.36); neither were there any differences in complicated grief, anxiety, or depression scores. Assistant nurses had lower job strain scores in the immediate extubation group. Compared to terminal weaning, immediate extubation was not associated with differences in psychological welfare of relatives when each method constituted standard practice in the ICU where it was applied. Patients had more airway obstruction and gasps with immediate extubation. ClinicalTrials.gov identifier: NCT01818895.

Rapid response to methylphenidate as an add-on therapy to mirtazapine in the treatment of major depressive disorder in terminally ill cancer patients: a four-week, randomized, double-blinded, placebo-controlled study.

PubMed

Ng, Chong Guan; Boks, Marco P M; Roes, Kit C B; Zainal, Nor Zuraida; Sulaiman, Ahmad Hatim; Tan, Seng Beng; de Wit, Niek J

2014-04-01

This is a 4 week, randomized, double-blind, placebo-controlled study to examine the effects of methylphenidate as add-on therapy to mirtazapine compared to placebo for treatment of depression in terminally ill cancer patients. It involved 88 terminally ill cancer patients from University of Malaya Medical Centre, Kuala Lumpur, Malaysia. They were randomized and treated with either methylphenidate or placebo as add on to mirtazapine. The change in Montgomery-Åsberg Depression Rating Scale (MADRS) score from baseline to day 3 was analyzed by linear regression. Changes of MADRS and Clinical Global Impression-Severity Scale (CGI-S) over 28 days were analyzed using mixed model repeated measures (MMRM). Secondary analysis of MADRS response rates, defined as 50% or more reduction from baseline score. A significantly larger reduction of Montgomery-Åsberg Depression Rating Scale (MADRS) score in the methylphenidate group was observed from day 3 (B=4.14; 95% CI=1.83-6.45). Response rate (defined as 50% or more reduction from baseline MADRS score) in the methylphenidate treated group was superior from day 14. Improvement in Clinical Global Impression-Severity Scale (CGI-S) was greater in the methylphenidate treated group from day 3 until day 28. The drop-out rates were 52.3% in the methylphenidate group and 59.1% in the placebo group (relative risk=0.86, 95%CI=0.54-1.37) due to cancer progression. Nervous system adverse events were more common in methylphenidate treated subjects (20.5% vs 9.1%, p=0.13). In conclusions, methylphenidate as add on therapy to mirtazapine demonstrated an earlier antidepressant response in terminally ill cancer patients, although at an increased risk of the nervous system side effects. Copyright © 2014 Elsevier B.V. and ECNP. All rights reserved.

Religious care required for Japanese terminally ill patients with cancer from the perspective of bereaved family members.

PubMed

Okamoto, Takuya; Ando, Michiyo; Morita, Tatsuya; Hirai, Kei; Kawamura, Ryo; Mitsunori, Miyashita; Sato, Kazuki; Shima, Yasuo

2010-02-01

The aim of this study was to explore the most suitable religious care for Japanese terminally ill patients with cancer based on the opinions of bereaved family members. A multicenter questionnaire survey on palliative care service was sent to 592 bereaved family members of patients with cancer who were admitted to palliative care units in Japan, and 430 responded by mail. In the section of the questionnaire about religious care, 382 responses were used for quantitative analysis, and 71 responses about religious care for qualitative analysis. In the current study, the 71 responses were grouped into families with and without a religion and were analyzed qualitatively. Families with a religion (N = 28) chose answers such as ''Instrumental care'' such as music or a religious event, ''Freedom of choice of kinds for religious care,'' ''Staff involvement of religious care,'' ''Meeting with a pastoral care workers,'' and ''Burden of offering a different kind of personal religion.'' In contrast, families without a religion (N = 44) chose answers such as ''Instrumental care,'' ''Freedom of choice whether patients receive religious care or not,'' ''Spiritual care,'' ''Not being able to accept religious care,'' and ''Burden of thinking about a religion and nuisance.'' These findings suggest that Japanese bereaved families with a religion generally regard religious care positively and prefer care through their own religion, whereas some families without a religion require religious care but some do not prefer it.

End of living: maintaining a lifeworld during terminal illness.

PubMed

Wrubel, Judith; Acree, Michael; Goodman, Steffanie; Folkman, Susan

2009-12-01

The narrative responses of 32 people with AIDS or cancer with survival prognoses of 6 months to a year to monthly interview questions about their daily lives were analysed with a team-based qualitative methodology. Two groups emerged: (a) a Maintained Lifeworld Group characterised by one or more of the following: continued engagement with family, friends, and community; the ability to relinquish untenable goals and substitute new, realistic ones; engagement in spirituality and a spiritual practice; and, (b) a Lifeworld Interrupted Group characterised by one or more of the following: relocation just before or during the study, cognitive impairment, commitment to untenable goals, ongoing substance abuse. Understanding how people with a terminal illness can maintain a lifeworld and experience well-being while also managing the physical challenges of their illness could help inform the support offered by professional and family caregivers to improve care recipients' quality of life.

Investigation of Optimal Time for Starting Betamethasone Using Fatigue Scores and Prognostic Nutritional Index in Terminally Ill Patients With Cancer-Related Fatigue.

PubMed

Koyama, Nanako; Matsumura, Chikako; Morii, Hiroaki; Hasegawa, Chiaki; Hira, Daiki; Daigo, Yataro; Terada, Tomohiro; Yano, Yoshitaka

2017-06-01

Corticosteroids are frequently used to treat cancer-related fatigue (CRF), but it is yet to be established as standard care, and few reports have defined the appropriate time to start treatment. We investigated the optimal time for starting betamethasone and evaluated the clinical validity of using the prognostic nutritional index (PNI) for this purpose. Data were retrospectively collected for patients with terminal cancer receiving betamethasone for palliative care. Fatigue strength was evaluated by the daily occurrence of fatigue, using proportion of adequate fatigue, AF(%), defined as the average of the daily score for all treatment days, AF(%) all , the initial 5 days, AF(%) initi5 , or the last 5 days, AF(%) last5 . We examined (1) the relationship between survival time and adequate fatigue for CRF and (2) the correlation between survival time and PNI (based on serum albumin and lymphocytes). Data from 24 patients were included. The AF(%) all was approximately 50% at 42 days before death and gradually decreased as the survival time shortened ( R 2 =.41, P <.001). There was a clear positive correlation between AF(%) all and AF(%) initi5 ( R 2 =.84, P <.001). At 42 days before death, PNI was approximately 30 and significantly correlated with the survival time ( R 2 = .873, P <.001). The adequate fatigue appears to be dependent on survival time, and PNI might be useful for identifying patients that will benefit from betamethasone use. It is hoped that these results will contribute to individualized pharmacotherapy of terminally ill patients with CRF.

Health benefits for the terminally ill: reality and perception.

PubMed

Gabel, J R; Hurst, K M; Hunt, K A

1998-01-01

This paper examines the availability and scope of hospice benefits as well as employers' attitudes and knowledge about care for the terminally ill. Data are drawn from a national random sample of 1,502 employers with 200 or more workers and from focus groups with employee benefits managers and their insurance advisers, brokers, and consultants. Major findings are that 83 percent of employers offer explicit hospice benefits, with most other firms covering hospice through high-cost case management. Most employers support the concept of hospice care because they believe that it reduces medical expenses.

Continuing Care of the Terminally Ill

PubMed Central

Sky, Ruth; Smith, David

1978-01-01

Terminal care has specific goals for the attending medical team. In truth, most dying patients do not expect miracles. What they ask for is assurance that they will not be abandoned or discarded because they have an incurable condition. Truth can be gentle and merciful, and not necessarily without hope. Grieving is normal for patients, families, nurses and doctors. Weeping with sad friends is not evidence of weakness, rather it displays great empathy, and can be therapeutic for patients and doctors together. PMID:11662497

Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial.

PubMed

Matlock, Dan D; Keech, Tarah A E; McKenzie, Marlene B; Bronsert, Michael R; Nowels, Carolyn T; Kutner, Jean S

2014-02-01

Patients nearing the end of their lives face an array of difficult decisions. This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness. We conducted a pilot randomized clinical trial of Health Dialog's Looking Ahead: choices for medical care when you're seriously ill DA (booklet and DVD) applied to patients on a hospital-based palliative care (PC) service. University of Colorado Hospital - December 2009 and May 2010. All adult, English-speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying. All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA. Measurements Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews. Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier. While the DA was acceptable, feasibility was limited by late-life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self-efficacy and confidence. © 2011 John Wiley & Sons Ltd.

Defining dignity in terminally ill cancer patients: a factor-analytic approach.

PubMed

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

2004-10-01

The construct of 'dignity' is frequently raised in discussions about quality end of life care for terminal cancer patients, and is invoked by parties on both sides of the euthanasia debate. Lacking in this general debate has been an empirical explication of 'dignity' from the viewpoint of cancer patients themselves. The purpose of the present study was to use factor-analytic and regression methods to analyze dignity data gathered from 213 cancer patients having less than 6 months to live. Patients rated their sense of dignity, and completed measures of symptom distress and psychological well-being. The results showed that although the majority of patients had an intact sense of dignity, there were 99 (46%) patients who reported at least some, or occasional loss of dignity, and 16 (7.5%) patients who indicated that loss of dignity was a significant problem. The exploratory factor analysis yielded six primary factors: (1) Pain; (2) Intimate Dependency; (3) Hopelessness/Depression; (4) Informal Support Network; (5) Formal Support Network; and (6) Quality of Life. Subsequent regression analyses of modifiable factors produced a final two-factor (Hopelessness/Depression and Intimate Dependency) model of statistical significance. These results provide empirical support for the dignity model, and suggest that the provision of end of life care should include methods for treating depression, fostering hope, and facilitating functional independence. Copyright 2004 John Wiley & Sons, Ltd.

Storytelling by Adults Diagnosed with Terminal Illness: Narrative Identifying through Dialogical Research

ERIC Educational Resources Information Center

Sauer, Michael Paul

2012-01-01

The purpose of this dialogical qualitative research study was to gain insight into the process of storytelling with adults diagnosed with terminal illness as a way of making meaning of their experiences and lives. The study was informed by the conceptual frameworks of story, storytelling, and story listening which are grounded in the theory of…

Current status of accurate prognostic awareness in advanced/terminally ill cancer patients: Systematic review and meta-regression analysis.

PubMed

Chen, Chen Hsiu; Kuo, Su Ching; Tang, Siew Tzuh

2017-05-01

No systematic meta-analysis is available on the prevalence of cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. To examine the prevalence of advanced/terminal cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. Systematic review and meta-analysis. MEDLINE, Embase, The Cochrane Library, CINAHL, and PsycINFO were systematically searched on accurate prognostic awareness in adult patients with advanced/terminal cancer (1990-2014). Pooled prevalences were calculated for accurate prognostic awareness by a random-effects model. Differences in weighted estimates of accurate prognostic awareness were compared by meta-regression. In total, 34 articles were retrieved for systematic review and meta-analysis. At best, only about half of advanced/terminal cancer patients accurately understood their prognosis (49.1%; 95% confidence interval: 42.7%-55.5%; range: 5.4%-85.7%). Accurate prognostic awareness was independent of service received and publication year, but highest in Australia, followed by East Asia, North America, and southern Europe and the United Kingdom (67.7%, 60.7%, 52.8%, and 36.0%, respectively; p = 0.019). Accurate prognostic awareness was higher by clinician assessment than by patient report (63.2% vs 44.5%, p < 0.001). Less than half of advanced/terminal cancer patients accurately understood their prognosis, with significant variations by region and assessment method. Healthcare professionals should thoroughly assess advanced/terminal cancer patients' preferences for prognostic information and engage them in prognostic discussion early in the cancer trajectory, thus facilitating their accurate prognostic awareness and the quality of end-of-life care decision-making.

Extensions to Regret-based Decision Curve Analysis: An application to hospice referral for terminal patients

PubMed Central

2011-01-01

Background Despite the well documented advantages of hospice care, most terminally ill patients do not reap the maximum benefit from hospice services, with the majority of them receiving hospice care either prematurely or delayed. Decision systems to improve the hospice referral process are sorely needed. Methods We present a novel theoretical framework that is based on well-established methodologies of prognostication and decision analysis to assist with the hospice referral process for terminally ill patients. We linked the SUPPORT statistical model, widely regarded as one of the most accurate models for prognostication of terminally ill patients, with the recently developed regret based decision curve analysis (regret DCA). We extend the regret DCA methodology to consider harms associated with the prognostication test as well as harms and effects of the management strategies. In order to enable patients and physicians in making these complex decisions in real-time, we developed an easily accessible web-based decision support system available at the point of care. Results The web-based decision support system facilitates the hospice referral process in three steps. First, the patient or surrogate is interviewed to elicit his/her personal preferences regarding the continuation of life-sustaining treatment vs. palliative care. Then, regret DCA is employed to identify the best strategy for the particular patient in terms of threshold probability at which he/she is indifferent between continuation of treatment and of hospice referral. Finally, if necessary, the probabilities of survival and death for the particular patient are computed based on the SUPPORT prognostication model and contrasted with the patient's threshold probability. The web-based design of the CDSS enables patients, physicians, and family members to participate in the decision process from anywhere internet access is available. Conclusions We present a theoretical framework to facilitate the hospice

Attitudes toward euthanasia among Polish physicians, nurses and people who have no professional experience with the terminally ill.

PubMed

Glebocka, A; Gawor, A; Ostrowski, F

2013-01-01

Euthanasia is an issue that generates an extensive social debate. Euthanasia is generally classified as either active or passive. The former is usually defined as taking specific steps to cause the patient's death, while the latter is described as withdrawal of medical treatment with the deliberate intention of bringing the patient's life to an end. The dispute on euthanasia involves a multitude of aspects including religious, legal, cultural, ethical, medical, and spiritual issues. The purpose of the present study was to examine the views of medical professionals toward the highly controversial issue of euthanasia. Accordingly, the research has been conducted among a group of Polish nurses and physicians working in Intensive Care and Oncology Units. Their views have been compared to those of the control group, which included the members of the general public, who do not work in medical profession. It was expected that the education and training and the day-to-day exposure to vegetative patients might influence the views of medical personnel concerning euthanasia. The research demonstrated that the members of all groups supported liberal views. Conservative views were not popular among the respondents. The physicians turned out to be the least conservative group. The survey has also demonstrated that there is a broad consensus that informational and psychological support should be provided to terminally ill patients and their relatives. The attitude toward the passive form of euthanasia seems to have broad support. In particular doctors tend to approve this form of bringing a terminally ill patient's life to an end. The active euthanasia is regarded with much less favor and physicians, in particular, appear to disapprove of it.

N-terminal pro-brain natriuretic peptide and high-sensitivity troponin T exhibit additive prognostic value for the outcome of critically ill patients.

PubMed

Lenz, Max; Krychtiuk, Konstantin A; Goliasch, Georg; Distelmaier, Klaus; Wojta, Johann; Heinz, Gottfried; Speidl, Walter S

2018-04-01

Patients treated at medical intensive care units suffer from various pathologies and often present with elevated troponin T (TnT) and N-terminal pro-brain natriuretic peptide (NT-proBNP) levels. Both markers may reflect different forms of cardiac involvement in critical illness. Therefore, the aim of our study was to examine the synergistic prognostic potential of NT-proBNP and high-sensitivity TnT (hs)TnT in unselected critically ill patients. We included all consecutive patients admitted to our intensive care unit within one year, excluding those suffering from acute myocardial infarction or undergoing cardiac surgery and measured NT-proBNP and TnT plasma levels on the day of admission and 72 hours thereafter. Of the included 148 patients, 52% were male, mean age was of 64.2 ± 16.8 years and 30-day mortality was 33.2%. Non-survivors showed significantly higher NT-proBNP and TnT plasma levels as compared with survivors ( p<0.01). An elevation of both markers exhibited an additive effect on mortality, as those with both NT-proBNP and TnT levels above the median had a 30-day mortality rate of 51.0%, while those with both markers below the median had a 16.7% mortality rate (hazard ratio 3.7). These findings were independent of demographic and clinical parameters ( p<0.05). Our findings regarding the individual predictive properties of NT-proBNP and TnT are in line with literature. However, we were able to highlight that they exhibit additive prognostic potential which exceeds their individual value. This might be attributed to a difference in underlying pathomechanisms and an assessment of synergistic risk factors.

Dependency in Critically Ill Patients

PubMed Central

Yang, Rumei

2016-01-01

By necessity, critically ill patients admitted to intensive care units (ICUs) have a high level of dependency, which is linked to a variety of negative feelings, such as powerlessness. However, the term dependency is not well defined in the critically ill patients. The concept of “dependency” in critically ill patients was analyzed using a meta-synthesis approach. An inductive process described by Deborah Finfgeld-Connett was used to analyze the data. Overarching themes emerged that reflected critically ill patients’ experience and meaning of being in dependency were (a) antecedents: dependency in critically ill patients was a powerless and vulnerable state, triggered by a life-threatening crisis; (b) attributes: the characteristic of losing “self” was featured by dehumanization and disembodiment, which can be alleviated by a “self”-restoring process; and (c) outcomes: living with dependency and coping with dependency. The conceptual model explicated here may provide a framework for understanding dependency in critically ill patients. PMID:28462328

Preparing Classroom Teachers for the Impending Death of a Student with Terminal Illness.

ERIC Educational Resources Information Center

Rice, Craig J.; Gourley, Junean Krajewski

2003-01-01

This article discusses students with terminal illnesses and the challenges teachers face in dealing with the issue of death. Classroom strategies for dealing with death are described and include using children's literature that explores death, using deaths of pets as teachable moments, and using children's films. (Contains references.) (CR)

Cautious Application of Pleural N-Terminal Pro-B-Type Natriuretic Peptide in Diagnosis of Congestive Heart Failure Pleural Effusions among Critically Ill Patients

PubMed Central

Yeh, Jiann-Horng; Huang, Chun-Ta; Liu, Chia-Hsiung; Ruan, Sheng-Yuan; Tsai, Yi-Ju; Chien, Ying-Chun; Yang, Ching-Yao; Huang, Chun-Kai; Hsu, Chia-Lin; Kuo, Lu-Cheng; Lee, Pei-Lin; Ku, Shih-Chi; Kuo, Ping-Hung; Yu, Chong-Jen

2014-01-01

Background and Objective Several studies on diagnostic accuracy of pleural N-terminal pro-B-type natriuretic peptide (NT-pro-BNP) for effusions from congestive heart failure (CHF) conclude that pleural NT-pro-BNP is a useful biomarker with high diagnostic accuracy for distinguishing CHF effusions. However, its applicability in critical care settings remains uncertain and requires further investigations. Methods NT-proBNP was measured in pleural fluid samples of a prospective cohort of intensive care unit patients with pleural effusions. Receiver operating characteristic curve analysis was performed to determine diagnostic accuracy of pleural NT-proBNP for prediction of CHF effusions. Results One hundred forty-seven critically ill patients were evaluated, 38 (26%) with CHF effusions and 109 (74%) with non-CHF effusions of various causes. Pleural NT-proBNP levels were significantly elevated in patients with CHF effusions. Pleural NT-pro-BNP demonstrated the area under the curve of 0.87 for diagnosing effusions due to CHF. With a cutoff of 2200 pg/mL, pleural NT-proBNP displayed high sensitivity (89%) but moderate specificity (73%). Notably, 29 (27%) of 109 patients with non-CHF effusions had pleural NT-proBNP levels >2200 pg/mL and these patients were more likely to experience septic shock (18/29 vs. 10/80, P<0.001) or acute kidney injury (19/29 vs. 9/80, P<0.001). Conclusions Among critically ill patients, pleural NT-proBNP measurements remain a useful diagnostic aid in evaluation of pleural effusions. However, patients with non-CHF effusions may exhibit high pleural NT-proBNP concentrations if they suffer from septic shock or acute kidney injury. Accordingly, it is suggested that clinical context should be taken into account when interpreting pleural NT-proBNP values in critical care settings. PMID:25502236

Is it useful to ask "Está deprimido?" ("Are you depressed?") to terminally-ill Portuguese patients? Results from outpatient research.

PubMed

Julião, Miguel; Nunes, Baltazar; Sobral, Maria Ana; Dias, Daniela; Inocêncio, Inês; Barbosa, António

2016-04-01

Depression is a serious psychological problem in the palliative care setting. Brief screening tools for depression are lacking and need to be brief and acceptable. This study aimed to identify the properties of the single Portuguese question "Está deprimido?" ("Are you depressed?") to screen for depression. Retrospective study from 100 patient's medical records identifying the answers on the single Portuguese question for depression "Está deprimido?" ("Are you depressed?") and the HADS depression sub-scale, using a score ≥11 on the latter as the gold standard for clinically significant depressive symptoms. Sensitivity, specificity, positive predictive and negative values were calculated. Response rate for the single Portuguese question for depression was 100%. Prevalence of depression symptoms (HADS-d ≥ 11) was 43%. To the question "Está deprimido?" 60 patients responded "yes." Sixteen patients who replied "no" to the single question had clinically significant depressive symptoms based on the HADS depression sub-scale. The single tool had 65.2% sensitivity, 49.2% specificity and 50.0% and 64.4% of positive predictive and negative values, respectively. In this first preliminary retrospective Portuguese study, the single question for depression has shown poor screening properties. Future research in larger and mixed patientś samples of Portuguese terminally ill is necessary to find more accurate and robust properties of this brief tool.

Men With a Terminal Illness Relax Their Criteria for Facial Attractiveness.

PubMed

Danel, Dariusz P; Siennicka, Agnieszka E; Fedurek, Pawel; Frackowiak, Tomasz; Sorokowski, Piotr; Jankowska, Ewa A; Pawlowski, Boguslaw

2017-07-01

According to the life history paradigm, in life-threatening conditions, sexual selection criteria are relaxed in order to increase the probability of a last resort reproduction, ultimately contributing to reproductive success. This should be reflected in loosened mating preferences - a process observed in nonhuman animals. Studies investigating this aspect in humans, however, are scarce. This study explored the aesthetic preferences towards facial and nonfacial stimuli in terminally ill patients with heart failure (HF) and their healthy, same-sex peers. The aim was to examine if these two groups of men demonstrate different patterns of aesthetic judgments. Using a 7-point scale, 65 male patients with HF and 143 healthy men evaluated the perceived attractiveness of 15 photographs (five adult male faces, five adult female faces, and five nonfacial pictures). A mixed-design analysis of variance was run to assess group differences in aesthetic preferences. Compared to healthy controls, stimuli. HF patients rated the pictures using significantly higher scores, but this applied only to male and female, but not nonfacial, stimuli. We propose that lower criteria for facial attractiveness in HF patients are linked to relaxation of mate preferences as a result of a life-threatening conditions, and that this process can be an adaptive mating strategy from an ultimate, evolutionary perspective. However, other mechanisms (e.g., seeking social support) may be also responsible for the observed patterns.

Men With a Terminal Illness Relax Their Criteria for Facial Attractiveness

PubMed Central

Danel, Dariusz P.; Siennicka, Agnieszka E.; Fedurek, Pawel; Frackowiak, Tomasz; Sorokowski, Piotr; Jankowska, Ewa A.; Pawlowski, Boguslaw

2017-01-01

According to the life history paradigm, in life-threatening conditions, sexual selection criteria are relaxed in order to increase the probability of a last resort reproduction, ultimately contributing to reproductive success. This should be reflected in loosened mating preferences — a process observed in nonhuman animals. Studies investigating this aspect in humans, however, are scarce. This study explored the aesthetic preferences towards facial and nonfacial stimuli in terminally ill patients with heart failure (HF) and their healthy, same-sex peers. The aim was to examine if these two groups of men demonstrate different patterns of aesthetic judgments. Using a 7-point scale, 65 male patients with HF and 143 healthy men evaluated the perceived attractiveness of 15 photographs (five adult male faces, five adult female faces, and five nonfacial pictures). A mixed-design analysis of variance was run to assess group differences in aesthetic preferences. Compared to healthy controls, stimuli. HF patients rated the pictures using significantly higher scores, but this applied only to male and female, but not nonfacial, stimuli. We propose that lower criteria for facial attractiveness in HF patients are linked to relaxation of mate preferences as a result of a life-threatening conditions, and that this process can be an adaptive mating strategy from an ultimate, evolutionary perspective. However, other mechanisms (e.g., seeking social support) may be also responsible for the observed patterns. PMID:28625113

[Ethics in intensive care and euthanasia : With respect to inactivating defibrillators at the end of life in terminally ill patients].

PubMed

Trappe, H-J

2017-04-01

In critically ill patients, intensive care medical procedures allow diseases to be cured or controlled that were considered incurable many years ago. For patients with terminal heart failure or heart disease with other severe comorbidities (cancer, stroke), the questions whether the deactivation of defibrillators is appropriate or must be regarded as active euthanasia may arise. Notable cases from the author's hospital are analyzed. The literature on the topic euthanasia and basic literature regarding defibrillator therapy are discussed. It is undisputed that patients as part of their self-determination have the right to renounce treatment. Active euthanasia and the thereby deliberate induction of death is prohibited by law in Germany and will be prosecuted. Passive euthanasia is the omission or reduction of possibly life-prolonging treatment measures. Passive euthanasia requires the patient's consent and is legally and ethically permissible. Indirect euthanasia takes into account acceleration of death as a side effect of a medication. Unpunishable assisted suicide ("assisted suicide") is the mere assistance of self-controlled and self-determined death. Assisted suicide is fundamentally not a criminal offense in Germany. Deactivation of a defibrillator is a treatment discontinuation, which is only permitted in accordance with the wishes of the patient. It is not a question of passive or active euthanasia. Involvement of a local ethics committee and/or legal consultation is certainly useful and sometimes also allows previously unrecognized questions to be answered.

Physical Illness, Psychiatric Illness, and the Acceptability of Suicide.

ERIC Educational Resources Information Center

Deluty, Robert H.

1989-01-01

Assessed whether attitudes toward suicide vary as function of type of illness that precipitates suicide. College students (N=455) responded to scenarios of suicide victim. Evaluations of suicide were most favorable when it occurred in response to terminal physical illness; less favorable in response to chronic, non-terminal physical illness; and…

[Validation of the Scale of Hope in Terminal Illness for relatives brief version (SHTI-b). Validity and reliability analysis.

PubMed

Villacieros, M; Bermejo, J C; Hassoun, H

2017-12-29

Bermejo and Villacieros' Scale of Hope in Terminal Disease (SHTD) specifically collects meanings of hope facing terminal disease, including considerations relating to psycho-emotional support and that have a transcendental sense. The objective of this paper is to validate the SHTD abbreviated and rephrased to adapt all the items to a single domain. Starting from the published SHTD, an exploratory factor analysis (EFA) was carried out with a sample of 177 valid questionnaires. In a second study, with another sample of 180 valid questionnaires, a confirmatory factor analysis (CFA) and a correlation analysis with other measurements of spiritual wellbeing (Functional Assessment of Chronic Illness Therapy-Sp) and hope (Herth Hope Index) were done. A bidimensional model with satisfactory goodness of fit index values was obtained (GFI = 0.991; CFI = 0.984; SRMR = 0.08; RMSEA = 0.057); the Relations of Transcendence factor obtained a Cronbach's alpha of 0.872 and Personal Relations an alpha of 0.762. The correlations of the SHTI-rb with external measures were: r = 0.527with FACIT; r = 0.266 with HHI; r = 0.667 with the Spirituality subscale of FACIT; and r = 0.348 with the Interrelation factor of HHI. The Relations of Transcendence subscale correlated with both Layout and Expectation and Interrelation of HHI (r = 0.162 and r = 0.329 respectively), while the scale of Personal Relations only correlated with Interrelation of HHI (r = 0.244). The Scale of Hope in Terminal Illness for relatives (brief version) is a valid and reliable specific instrument for terminal patients.

Unsolicited written narratives as a methodological genre in terminal illness: challenges and limitations.

PubMed

O'Brien, Mary R; Clark, David

2012-02-01

Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease--the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here.

Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients.

PubMed

Schrank, Beate; Ebert-Vogel, Alexandra; Amering, Michaela; Masel, Eva K; Neubauer, Marie; Watzke, Herbert; Zehetmayer, Sonja; Schur, Sophie

2016-07-01

Female family caregivers consistently report higher levels of stress and burden compared to male caregivers. Explanations for the apparently higher psychological vulnerability of female caregivers are largely missing to date. This study assesses the correlates and determinants of caregiver burden in family caregivers of advanced cancer patients with a specific focus on gender differences. Three hundred and eight self-identified main informal caregivers of advanced cancer patients were cross-sectionally assessed using structured questionnaires for caregiver burden and hypothesised determinants of burden, including sociodemographic characteristics, caring arrangements, support needs, hope and coping style. Gender differences and predictors of burden were assessed using t-tests, chi-squared tests and univariate linear regression. Significant univariate predictors were entered in an analysis of covariance separately for men and women. Burden was significantly higher in women. Hope was the most significant protective factor against burden in both genders, together with perceived fulfilment of support needs. Only in women emotion-oriented coping and being in employment while caring were significantly predictive of higher burden in the multivariate analysis. The model explained 36% of the variance in burden in men and 29% in women. Psychological support interventions for family caregivers should take gender-specific risk factors into account. Interventions focusing on keeping up hope while caring for a terminally ill family member may be a valuable addition to palliative services to improve support for family carers. Women may benefit from interventions that address adaptive coping and strategies to deal with the dual demands of employment and caring. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.

PubMed

Ohnsorge, Kathrin; Gudat, Heike; Rehmann-Sutter, Christoph

2014-01-01

Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach. THREE DIMENSIONS WERE FOUND TO BE CRUCIAL FOR UNDERSTANDING AND ANALYSING WTD STATEMENTS: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical 'meanings' were identified in the study, including "to let death put an end to severe suffering", "to move on to another reality", and - more frequently- "to spare others from the burden of oneself". The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding

Terminal (Mis)diagnosis and the Physician–Patient Relationship in LM Montgomery’s The Blue Castle

PubMed Central

2010-01-01

LM Montgomery’s The Blue Castle was first published in 1926, yet contains many insights into medical practice that remain relevant today. The protagonist, Valancy, mistakenly receives a terminal diagnosis in a letter from her physician, who has sent her a note intended for another patient. Her interactions with the physician raise issues that are still relevant in contemporary medical education and practice, primarily the importance of effective communication in the physician–patient relationship, especially in the context of diagnosing terminal illness and handling a diagnostic error. The Blue Castle offers a useful starting point for debate and discussion in medical education about these topics. PMID:20473640

Palliative sedation at home for terminally ill children with cancer.

PubMed

Korzeniewska-Eksterowicz, Aleksandra; Przysło, Łukasz; Fendler, Wojciech; Stolarska, Małgorzata; Młynarski, Wojciech

2014-11-01

The presence of symptoms that are difficult to control always requires adjustment of treatment, and palliative sedation (PS) should be considered. We analyzed our experience in conducting PS at home for terminally ill children with cancer during a seven-year period. We performed a retrospective analysis of medical records of children with cancer treated at home between the years 2005 and 2011. We analyzed the data of 42 cancer patients (18% of all patients); in 21 cases, PS was initiated (solid tumors n = 11, brain tumors [5], bone tumors [4], leukemia [1]). Sedation was introduced because of pain (n = 13), dyspnea (9), anxiety (5), or two of those symptoms (6). The main drug used for sedation was midazolam; all patients received morphine. There were no significant differences in the dose of morphine or midazolam depending on the patient's sex; age was correlated with an increase of midazolam dose (R = 0.68; P = 0.005). Duration of sedation (R = 0.61; P = 0.003) and its later initiation (R = 0.43; P = 0.05) were correlated with an increase of the morphine dose. All patients received adjuvant treatment; in patients who required a morphine dose increase, metoclopramide was used more often (P = 0.0002). Patients did not experience any adverse reactions. Later introduction of sedation was associated with a marginally higher number of intervention visits and a significantly higher number of planned visits (R = 0.53; P = 0.013). Sedation may be safely used at home. It requires close monitoring and full cooperation between the family and hospice team. Because of the limited data on home PS in pediatric populations, further studies are needed. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Revisiting biographical disruption: exploring individual embodied illness experience in people with terminal cancer.

PubMed

Reeve, Joanne; Lloyd-Williams, Mari; Payne, Sheila; Dowrick, Christopher

2010-03-01

Biographical accounts of illness offer useful insights into the social and adaptive processes of living with chronic illness. Yet there are concerns that the underlying theoretical assumptions of a reflexive self seeking to maintain meaning may not reflect the lived experience of individuals. A narrative emphasis may neglect the importance of emotional/felt experiences; while an analytical focus on disruptive processes may not adequately reflect the totality of actual events. In this study, we explored how well biographical theory supports understanding of individual lived experience. Narratives from 19 individuals identified from General Practice lists with a terminal diagnosis of cancer were analysed using the holistic-form approach described by Lieblich. Participants described an ongoing process of living their life, 'managing' disruptive events and maintaining an overall sense of well-being (narrative form = biographical flow). For a minority, continuity was lost when people's capacity to continue living their everyday lives was overwhelmed (narrative form = fracture). The identified emphasis was on individual creative capacity in the face of terminal illness, highlighting the importance of embodied experience in understanding outcome and need. Maintaining continuity was draining: exhaustion precipitated fracture and thus need for external help to restore continuity. By focusing on feelings associated with overall narrative form, rather than individual disruptive events, we highlight the context in which disruptive events are experienced, and individual perceptions of their relative importance. We conclude that combining narrative and emotion offers new insights into the value of understanding of biographical accounts of illness in the context of individual creative capacity. We discuss the possibilities for new approaches to clinical assessment and management of need.

N-terminal pro-B-type natriuretic peptide is an independent predictor of outcome in an unselected cohort of critically ill patients.

PubMed

Meyer, Brigitte; Huelsmann, Martin; Wexberg, Paul; Delle Karth, Georg; Berger, Rudolf; Moertl, Deddo; Szekeres, Thomas; Pacher, Richard; Heinz, Gottfried

2007-10-01

Natriuretic peptides emerged during recent years as potent prognostic markers in patients with heart failure and acute myocardial infarction. In addition, natriuretic peptides show strong predictive value in patients with pulmonary embolism, sepsis, renal failure, and shock. The present study tests the prognostic information of N-terminal pro-B-type natriuretic peptide (NT-pro-BNP) in an unselected cohort of critically ill patients. Prospective, observational study. A tertiary intensive care unit in a university hospital. A total of 289 consecutive patients admitted to the intensive care unit during a 16-month period with the following data: age 64 +/- 14 yrs, male n = 191, Simplified Acute Physiology Score II of 52 +/- 24, mechanical ventilation n = 180 (62%), vasopressors n = 179 (62%), renal failure n = 24 (8%). None. Plasma NT-pro-BNP samples (Roche Diagnostics) were obtained on intensive care unit admission. Data are given as median [range]. Intensive care unit survivors had significantly lower NT-pro-BNP values compared with intensive care unit nonsurvivors (3394 [24-35,000] vs. 6776 [303-35,000] pg/mL, survivors vs. nonsurvivors, respectively, p = .001). Hospital survivors were characterized by significantly lower NT-pro-BNP values (2656 [24-35,000] vs. 8390 [303-35,000] pg/mL, survivors vs. nonsurvivors, respectively, p = .001). NT-pro-BNP levels were not significantly different in patients with primary cardiac diagnosis compared with those with a noncardiac admission diagnosis (4794 [26-35,000], n = 202 vs. 3349 [24-35,000], n = 87, cardiac vs. noncardiac, respectively, p = .28). In a logistic regression model, Simplified Acute Physiology Score II and NT-pro-BNP were independently associated with hospital survival (chi = 35.6, p = .0001 and chi = 11.3, p = .0008, Simplified Acute Physiology Score II and NT-pro-BNP, respectively). Areas under the receiver operating characteristic curves of NT-pro-BNP and Simplified Acute Physiology Score II were not

Severity of Illness Scores May Misclassify Critically Ill Obese Patients.

PubMed

Deliberato, Rodrigo Octávio; Ko, Stephanie; Komorowski, Matthieu; Armengol de La Hoz, M A; Frushicheva, Maria P; Raffa, Jesse D; Johnson, Alistair E W; Celi, Leo Anthony; Stone, David J

2018-03-01

Severity of illness scores rest on the assumption that patients have normal physiologic values at baseline and that patients with similar severity of illness scores have the same degree of deviation from their usual state. Prior studies have reported differences in baseline physiology, including laboratory markers, between obese and normal weight individuals, but these differences have not been analyzed in the ICU. We compared deviation from baseline of pertinent ICU laboratory test results between obese and normal weight patients, adjusted for the severity of illness. Retrospective cohort study in a large ICU database. Tertiary teaching hospital. Obese and normal weight patients who had laboratory results documented between 3 days and 1 year prior to hospital admission. None. Seven hundred sixty-nine normal weight patients were compared with 1,258 obese patients. After adjusting for the severity of illness score, age, comorbidity index, baseline laboratory result, and ICU type, the following deviations were found to be statistically significant: WBC 0.80 (95% CI, 0.27-1.33) × 10/L; p = 0.003; log (blood urea nitrogen) 0.01 (95% CI, 0.00-0.02); p = 0.014; log (creatinine) 0.03 (95% CI, 0.02-0.05), p < 0.001; with all deviations higher in obese patients. A logistic regression analysis suggested that after adjusting for age and severity of illness at least one of these deviations had a statistically significant effect on hospital mortality (p = 0.009). Among patients with the same severity of illness score, we detected clinically small but significant deviations in WBC, creatinine, and blood urea nitrogen from baseline in obese compared with normal weight patients. These small deviations are likely to be increasingly important as bigger data are analyzed in increasingly precise ways. Recognition of the extent to which all critically ill patients may deviate from their own baseline may improve the objectivity, precision, and generalizability of ICU mortality

Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients', carers' and clinicians' understanding of heart failure prognosis and its management.

PubMed

Stocker, Rachel; Close, Helen; Hancock, Helen; Hungin, A Pali S

2017-12-01

Communication and planning for heart failure (HF) care near the end of life is known to be complex. Little is known about how the patient experience of palliative assessment and communication needs change over time, and how this might inform management. Our aim was to explore experiences of giving or receiving a prognosis and advanced palliative care planning (ACP) for those with HF. We carried out a longitudinal grounded theory study, employing in-depth interviews with 14 clinicians (primary and secondary care) and observations of clinic and home appointments, followed by a series of interviews with 13 patients with HF and 9 carers. Overall, the majority of participants rejected notions of HF as a terminal illness in favour of a focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Clinicians revealed frustration about the uncertain nature of HF prognosis, leading to difficulties in planning. Others highlighted the need to deliver problem-based, individualised care but felt constrained sometimes by the lack of multidisciplinary ACP. Patients reported an absence of prognostic discussions with clinicians. This is the first study exploring the experiences of prognostic communication at all stages of HF. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. Findings support the incorporation of a problem-based approach to management, which recognises the importance of everyday functioning for patients and carers as well as the opportunity for ACP. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Cost of illness and illness perceptions in patients with fibromyalgia.

PubMed

Vervoort, Vera M; Vriezekolk, Johanna E; Olde Hartman, Tim C; Cats, Hans A; van Helmond, Toon; van der Laan, Willemijn H; Geenen, Rinie; van den Ende, Cornelia H

2016-01-01

The disease impact and economic burden of fibromyalgia (FM) are high for patients and society at large. Knowing potential determinants of economic costs may help in reducing this burden. Cognitive appraisals (perceptions) of the illness could affect costs. The present study estimated costs of illness in FM and examined the association between these costs and illness perceptions. Questionnaire data of FM severity (FIQ), illness perceptions (IPQ-R-FM), productivity losses (SF-HLQ) and health care use were collected in a cohort of patients with FM. Costs were calculated and dichotomised (median split). Univariate and hierarchic logistic regression models examined the unique association of each illness perception with 1) health care costs and 2) costs of productivity losses. Covariates were FM severity, comorbidity and other illness perceptions. 280 patients participated: 95% female, mean age 42 (SD=12) years. Annualised costs of FM per patient were €2944 for health care, and €5731 for productivity losses. In multivariate analyses, a higher disease impact (FIQ) and two of seven illness perceptions (IPQ-R-FM) were associated with high health care costs: 1) high scores on 'cyclical timeline' reflecting a fluctuating, unpredictable course and 2) low scores on 'emotional representations', thus not perceiving a connection between fibromyalgia and emotions. None of the variables was associated with productivity losses. Our study indicates that perceiving a fluctuating course and low emotional representation, which perhaps reflects somatic fixation, are associated with health care costs in FM. Future studies should examine whether targeting these illness perceptions results in reduction of costs.

Gender differences in the evolution of illness understanding among patients with advanced cancer

PubMed Central

Fletcher, Kalen; Prigerson, Holly G.; Paulk, Elizabeth; Temel, Jennifer; Finlay, Esme; Marr, Lisa; McCorkle, Ruth; Rivera, Lorna; Munoz, Francisco; Maciejewski, Paul K.

2014-01-01

Background Patient understanding of advanced metastatic disease is central to decisions about care near death. Prior studies have focused on gender differences in communication style rather than on illness understanding. Objectives To evaluate gender differences in terminal illness acknowledgement (TIA), understanding that the disease is incurable and the advanced stage of the disease. To evaluate gender differences in patients’ reports of discussions of life expectancy with oncology providers and its effect on differences in illness understanding. Methods Coping with Cancer 2 patients (N = 68) were interviewed before and after a visit with their oncology providers to discuss scan results. Results At the prescan interview, there were no statistically significant gender differences in patient measures of illness understanding. At the postscan interview, women were more likely than men to recognize that their illness was incurable (Adjusted Odds Ratio, [AOR] = 5.29; P = .038), know that their cancer was at an advanced stage (AOR = 6.38; P = .013), and report having had discussions of life expectancy with their oncologist (AOR = 4.77; P = .021). Controlling discussions of life expectancy, women were more likely than men to report that their cancer was at an advanced stage (AOR = 9.53; P = .050). Controlling for gender, discussions of life expectancy were associated with higher rates of TIA (AOR = 4.65; P = .036) and higher rates of understanding that the cancer was incurable (AOR = 4.09; P = .085). Conclusions Due largely to gender differences in communication, women over time have a better understanding of their illness than men. More frequent discussions of life expectancy should enhance illness understanding and reduce gender differences. PMID:24400392

What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care

PubMed Central

2014-01-01

Background Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. Methods Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach. Results Three dimensions were found to be crucial for understanding and analysing WTD statements: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical ‘meanings’ were identified in the study, including “to let death put an end to severe suffering”, “to move on to another reality”, and – more frequently– “to spare others from the burden of oneself”. Conclusions The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer

Expanding the Use of Continuous Sedation Until Death: Moving Beyond the Last Resort for the Terminally Ill.

PubMed

LiPuma, Samuel H; DeMarco, Joseph P

2015-01-01

As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a "last resort," and a position statement from the American Academy of Hospice and Palliative Medicine describe it as "an intervention reserved for extreme situations." Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of "last resort." Copyright 2015 The Journal of Clinical Ethics. All rights reserved.

Aging and the Right to Terminate Medical Treatment

ERIC Educational Resources Information Center

Haug, Marie

1978-01-01

Belief in right to terminate medical care in case of irreversible terminal illness is analyzed by age, education, health, and attitudes to patient rights. Although age is related to supporting right to halt treatment, with those over 65 least supportive, relation to professional care in general has more explanatory power. (Author)

[Terminal sedation: consultation with a second physician as is the case in euthanasia and assisted suicide].

PubMed

Ponsioen, B P; Schuurman, W H A Elink; van den Hurk, A J P M; van der Poel, B N M; Runia, E H

2005-02-26

In terminally-ill patients in the Netherlands deep sedation by means of a continuous subcutaneous infusion with midazolam occurs more frequently than euthanasia and assisted suicide. Deep terminal sedation is applied to relieve symptoms during the phase of dying, but in contrast to euthanasia and assisted suicide, does not hasten death. In three terminally-ill patients, a 65-year-old man suffering from pulmonary carcinoma, a 94-year-old woman with general malaise, nausea and anorexia, and a 79-year-old woman in the final stage of ovarian carcinoma, a general-practitioner advisor was consulted about an end-of-life decision--deep terminal sedation versus euthanasia or assisted suicide. The first two patients were given deep sedation until death, in both cases a day and a half later. The third patient's request for euthanasia was considered to meet the legal criteria for euthanasia. Compliance with the Dutch statutory criteria for due care in euthanasia and assisted suicide might also be helpful when deciding about terminal deep sedation, but the role and responsibility of the attending physician may differ. However, the radical effects of sedation on the terminally-ill patient and the rapid changes in the clinical situation of the patient when the decision to sedate is taken, both emphasize the need for consultation with another physician.

When Is Depression a Terminal Illness? Deliberative Suicide in Chronic Mental Illness.

PubMed

George, Constance E

2016-06-01

This commentary explores the utility of hope as a therapeutic tool for intervention in the case of a patient with a mental illness that is refractory to treatment over time, who expresses her intention to commit suicide. It begins with a short discussion differentiating a deliberative consideration of suicide from an impulsive act. Then the commentary defines hope, how it might be used as a therapeutic tool, and which limitations a clinician might confront in such a case. This commentary also considers the role of a physician in orientation not only to the patient but also to her own thoughts, feelings, and emotions regarding a patient's expressed desire to end her life. © 2016 American Medical Association. All Rights Reserved. ISSN 2376-6980.

Nothing left to chance? The impact of locus of control on physical and mental quality of life in terminal cancer patients.

PubMed

Brown, Alaina J; Thaker, Premal H; Sun, Charlotte C; Urbauer, Diana L; Bruera, Eduardo; Bodurka, Diane C; Ramondetta, Lois M

2017-06-01

The purpose of this study is to evaluate if locus of control (LOC) predicts various quality of life (QOL) and mental well-being measures among terminally ill cancer patients at the time of palliative care consult. Multi-site analysis of patients with advanced cancer being seen as new patients in a Palliative and Supportive Care outpatient clinic. Patients completed the following surveys: locus of control (LOC) scale, Functional Assessment of Chronic Illness Therapy-General (FACT-G), Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp), Hospital Anxiety Depression Scale (HADS), and Herth Hope Index (HHI). Regression models were created to examine the effect of LOC upon QOL, symptoms, and other measures of mental well-being. These models adjusted for the effect of age, gender, race, partnership status, education, and months since diagnosis as potential confounders. This study enrolled 100 patients. After adjusting for site, race, and partnership status, higher levels of LOC chance predicted decreased QOL (FACT-G) (p < 0.01). Higher levels of LOC chance also correlated with increased depression and anxiety (p ≤ 0.01) and decreased meaning/peace and faith (p ≤ 0.01). Additionally, higher levels of LOC chance predicted decreased hope (HHI) (p ≤ 0.001). Terminally ill cancer patients with a high LOC chance may be at risk for decreased physical and mental well-being at the end of life. Efforts should be made to identify these patients and design interventions to increase their feeling of control over the situation in order to improve physical and mental well-being at the end of life.

C-terminal and intact FGF23 in critical illness and their associations with acute kidney injury and in-hospital mortality.

PubMed

Rygasiewicz, Karolina; Hryszko, Tomasz; Siemiatkowski, Andrzej; Brzosko, Szymon; Rydzewska-Rosolowska, Alicja; Naumnik, Beata

2018-03-01

FGF23 proved its value in prognostication of cardiovascular events and mortality among renal patients and general population. Limited data exist whether FGF23 may have any use in prediction of negative outcomes among critically ill patients admitted to intensive care unit (ICU). Single center cohort study performed among patients admitted to ICU. The primary exposure was FGF23 plasma concentration measured within 24 h of ICU admission. The primary outcome was incident Acute Kidney Injury (AKI) and in-hospital mortality during the ICU stay. The study enrolled 79 patients admitted to ICU. C-terminal FGF23 (cFGF23) but not intact FGF23 (iFGF23) concentration was significantly elevated in patients, who acquired AKI and non-survivors (p < .001). ROC analysis of cFGF23 yielded an AUC of 0.81 and 0.85 for prediction of incident AKI and death during ICU stay, respectively. Multivariate analysis showed higher odds for AKI (OR 1.80; 95% CI 1.10-2.96) and in-hospital mortality (OR 2.85; 95% CI 1.60-5.06) for one unit increase of log transformed cFGF23. cFGF23 measurement may serve as a novel biomarker for incident AKI and death among critically ill patients. Copyright © 2017 Elsevier Ltd. All rights reserved.

Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial.

PubMed

Chochinov, Harvey Max; Kristjanson, Linda J; Breitbart, William; McClement, Susan; Hack, Thomas F; Hassard, Tom; Harlos, Mike

2011-08-01

Dignity therapy is a unique, individualised, short-term psychotherapy that was developed for patients (and their families) living with life-threatening or life-limiting illness. We investigated whether dignity therapy could mitigate distress or bolster the experience in patients nearing the end of their lives. Patients (aged ≥18 years) with a terminal prognosis (life expectancy ≤6 months) who were receiving palliative care in a hospital or community setting (hospice or home) in Canada, USA, and Australia were randomly assigned to dignity therapy, client-centred care, or standard palliative care in a 1:1:1 ratio. Randomisation was by use of a computer-generated table of random numbers in blocks of 30. Allocation concealment was by use of opaque sealed envelopes. The primary outcomes--reductions in various dimensions of distress before and after completion of the study--were measured with the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale, Patient Dignity Inventory, Hospital Anxiety and Depression Scale, items from the Structured Interview for Symptoms and Concerns, Quality of Life Scale, and modified Edmonton Symptom Assessment Scale. Secondary outcomes of self-reported end-of-life experiences were assessed in a survey that was undertaken after the completion of the study. Outcomes were assessed by research staff with whom the participant had no previous contact to avoid any possible response bias or contamination. Analyses were done on all patients with available data at baseline and at the end of the study intervention. This study is registered with ClinicalTrials.gov, number NCT00133965. 165 of 441 patients were assigned to dignity therapy, 140 standard palliative care, and 136 client-centred care. 108, 111, and 107 patients, respectively, were analysed. No significant differences were noted in the distress levels before and after completion of the study in the three groups. For the secondary outcomes, patients reported that

An investigation of models of illness in carers of schizophrenia patients using the Illness Perception Questionnaire.

PubMed

Barrowclough, C; Lobban, F; Hatton, C; Quinn, J

2001-11-01

Although carers' reactions to schizophrenic illness in a close family member may have important implications for the patient and for themselves, little is known of factors that influence the way carers respond. In the area of physical health problems, people's models of their illness or illness representations have been found to be related to the ways they react and cope with their illness. This study examines the use of a modified form of the Illness Perception Questionnaire (IPQ) to investigate illness models in a sample of carers of schizophrenia patients. Forty-seven carers participated. The psychometric properties of the modified IPQ were examined, and a number of carer and patient outcomes were investigated in relation to carer scores on the illness identity, consequences, control-cure and timeline subscales of the modified IPQ. These outcomes included measures of carer distress and burden, expressed emotion dimensions, and patient functioning. The modified IPQ was found to be a reliable measure of carers' perceptions of schizophrenia. Carer functioning, the patient-carer relationship and patient illness characteristics were associated with different dimensions of illness perceptions. The findings support the proposal that carer cognitive representations of the illness may have important implications for both carer and patient outcomes in schizophrenia.

Ethical Guidelines for Counselors when Working with Clients with Terminal Illness Requesting Physician Aid in Dying

ERIC Educational Resources Information Center

Kurt, Layla J.; Piazza, Nick J.

2012-01-01

In 2005, the American Counseling Association (ACA) introduced a new ethical standard for counselors working with clients with terminal illness who are considering hastened death options. The authors' purpose is to inform counselors of the Death With Dignity Act and explore relevant ethical guidelines in the "ACA Code of Ethics" (ACA, 2005).

Is short-term PEG-tube placement beneficial in acutely ill cognitively intact elderly patients? A proposed decision making algorithm

PubMed Central

Abraham, Rtika R; Girotra, Mohit; Wei, Jeanne Y.; Azhar, Gohar

2014-01-01

Aim Percutaneous Endoscopic Gastrostomy (PEG) tube is an important method of enteral feeding for patients who require temporary or long-term artificial nutritional support to prevent or correct disease-related malnutrition. However, there is paucity of data on the utility of short-term PEG tube placements in acute illnesses in cognitively intact elderly. Methods We present a series of seven, cognitively intact patients (age range = 72 to 93 years), who had PEG tubes placed for short periods. These patients were diagnosed with “failure to thrive” and were managed by placing a PEG tube temporarily for nutritional management. None of these patients had terminal illness or hospice eligibility and all of our patients were community dwellers. Results All our elderly patients experienced good outcomes in terms of their functional status and nutritional support. Conclusions Our series clearly supports the notion that short-term PEG tube placement in cognitively-intact elderly patients could be a successful strategy to support them during an episode of acute illness and to improve their nutritional deficits and survival. PMID:25109444

Zidovudine adherence in persons with AIDS. The relation of patient beliefs about medication to self-termination of therapy.

PubMed

Smith, M Y; Rapkin, B D; Morrison, A; Kammerman, S

1997-04-01

To examine the relation of patient beliefs about medication usage and adherence to zidovudine (ZDV) therapy in persons with AIDS. Face-to-face interviews were used to determine attitudes of persons with AIDS toward ZDV and other prescribed medications, history of ZDV usage, and sociodemographics. A public hospital infectious disease clinic, an AIDS day care program, and an inpatient unit in a voluntary hospital where care was provided cooperatively by staff and an informal-care partner. One hundred forty-one people with the acquired immunodeficiency syndrome agreed to be reinterviewed as part of a longitudinal, New York City-based study examining outcomes related to quality of life. Initial recruitment procedures were to approach all active AIDS patients at each of the three sites between January and July of 1992: reinterviews, which were conducted an average of 6 months later, occurred from mid-1992 through May of 1993. The Zidovudine Drug Attitude Inventory was used to assess subjective feelings and attitudes concerning ZDV and prescribed medications in general. Respondents were grouped into five categories on the basis of their ZDV usage history: (1) "short-term" users (i.e., those who had been taking ZDV for 25 months or less); (2) "long-term" users (i.e., those who had been taking ZDV for more than 25 months); (3) self-terminated users; (4) doctor-terminated users; and (5) never users. Long-term users were likely to view ZDV as an illness prophylactic. In contrast, self-terminated users and never users were most likely to believe that ZDV caused adverse side effects and that medicine need not be taken as prescribed. Patients' beliefs about ZDV were significantly associated with adherence-related behavior. In particular, those who had self-terminated ZDV treatment believed that taking the drug was harmful, were skeptical of its ability to prevent illness, and felt that physician's directives about medication usage in general could be disregarded. These findings

OA24 Support for terminally-ill cancer patients: perceptions of religious leaders about end-of-life spiritual care in lagos, nigeria.

PubMed

Onibogi, Olanrewaju

2015-04-01

Religious leaders are well respected in most Nigerian communities and are often called in to provide support for terminally-ill patients. Many Nigeria communities still view cancer as a stigmatised disease. This study sought to elicit the perceptions of Christian and Islamic religious leaders and explore problems associated with their involvement in end-of-life care for cancer patients. Participants were recruited among 114 religious leaders. Four focus group discussion sessions were then conducted with open-ended questions on previous involvement in end-of-life care of cancer patients and whether they would like to do more. There were thirty (30) willing participants in all. The discussions were audiotaped, transcribed and coded using the NUDIST software. Ninety of the respondents (62%) would not be involved in end-of-life care. This is because of the fear of peer pressure. The responses could be classified under three major themes were identified: (1) Care supposed to be provided by all religious leaders (2) End-of-Life care in institutions are safer (3) End-of-Life care consumes time. Statements made by respondents include "I will fall out with many if I am found ministering to dying patients". We observe that peer pressure played an important role in the acceptability of end-of-life activities in this group. This could be used in the positive light in designing interventions. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Strategies for healthcare professionals to facilitate patient illness understanding.

PubMed

Nunstedt, Håkan; Rudolfsson, Gudrun; Alsén, Pia; Pennbrant, Sandra

2017-12-01

To describe how healthcare professionals facilitate patient illness understanding. Healthcare professionals and patients differ in their illness understanding. If the information provided by healthcare professionals is not adapted to the patient's daily life, it may be unusable for the patient. Previous research has found that healthcare professionals should individualise the information to enable the patient to apply the knowledge to the personal situation and to develop illness understanding. However, little is known of how healthcare professionals can facilitate patient illness understanding. A qualitative descriptive study based on individual, semi-structured, open-ended and face-to-face interviews was conducted with healthcare professionals (n = 11) concerning how they facilitate patients illness understanding. Three health centres were involved during the period of March to November 2014. The interviews were analysed with qualitative content analysis. The result identified a continuous and collaborative process with three strategies used by healthcare professionals to facilitate the patient's illness understanding: (i) assess the patient's illness understanding, (ii) interact with the patient to develop illness understanding and (iii) support the patient's personal development for illness understanding. The steps in the process depend on each other. The results of our analysis indicate that healthcare professionals can use the continuous and collaborative process to enhance the patient's self-care ability and turn his or her knowledge into action for improving illness understanding. The three continuous and collaborative process strategies involving pedagogical approaches can create conditions for healthcare professionals to obtain a holistic view of the patient's life and to be a key resource for person-centred care. © 2017 John Wiley & Sons Ltd.

Energy Requirements in Critically Ill Patients.

PubMed

Ndahimana, Didace; Kim, Eun-Kyung

2018-04-01

During the management of critical illness, optimal nutritional support is an important key for achieving positive clinical outcomes. Compared to healthy people, critically ill patients have higher energy expenditure, thereby their energy requirements and risk of malnutrition being increased. Assessing individual nutritional requirement is essential for a successful nutritional support, including the adequate energy supply. Methods to assess energy requirements include indirect calorimetry (IC) which is considered as a reference method, and the predictive equations which are commonly used due to the difficulty of using IC in certain conditions. In this study, a literature review was conducted on the energy metabolic changes in critically ill patients, and the implications for the estimation of energy requirements in this population. In addition, the issue of optimal caloric goal during nutrition support is discussed, as well as the accuracy of selected resting energy expenditure predictive equations, commonly used in critically ill patients.

[Anesthetic care for fibrobronchoscopy in patients with chronic terminal respiratory insufficiency undergoing evaluation for isolated lung transplantation].

PubMed

Solca, M; Elena, A; Croci, M; Damia, G

1993-01-01

During the first 18 month operation of the isolated lung transplantation program at or Institution, eight patients with terminal chronic respiratory failure underwent fiberoptic bronchoscopy and broncho-alveolar lavage as part of their evaluation for isolated lung transplantation. Four patients had severe obstructive, three restrictive, and one mixed, obstructive and restrictive, disease; all of them were on continuous supplemental oxygen. Procedures were performed under topical anaesthesia, with either light sedation or simple monitored anaesthesia care. Monitoring included non-invasive blood pressure measurement, pulse oximeter and precordial stethoscope. No adverse events were recorded, except in one case, when pulse oximeter reading precipitously dropped below 80%, to a minimum of 68-69%. The procedures was terminated short of its completion, and the patient was briefly assisted with manual bag ventilation on oxygen 100%. Pulse oximeter quickly returned to normal levels (above 90%), and the patient promptly recovered, without complications. The importance of monitored anaesthesia care during fiberoptic bronchoscopy (a usually benign procedure) in critically ill patients is greatly emphasized.

Nutritional requirements of the critically ill patient.

PubMed

Chan, Daniel L

2004-02-01

The presence or development of malnutrition during critical illness has been unequivocally associated with increased morbidity and mortality in people. Recognition that malnutrition may similarly affect veterinary patients emphasizes the need to properly address the nutritional requirements of hospitalized dogs and cats. Because of a lack in veterinary studies evaluating the nutritional requirements of critically ill small animals, current recommendations for nutritional support of veterinary patients are based largely on sound clinical judgment and the best information available, including data from experimental animal models and human studies. This, however, should not discourage the veterinary practitioner from implementing nutritional support in critically ill patients. Similar to many supportive measures of critically ill patients, nutritional interventions can have a significant impact on patient morbidity and may even improve survival. The first step of nutritional support is to identify patients most likely to benefit from nutritional intervention. Careful assessment of the patient and appraisal of its nutritional needs provide the basis for a nutritional plan, which includes choosing the optimal route of nutritional support, determining the number of calories to provide, and determining the composition of the diet. Ultimately, the success of the nutritional management of critically ill dogs and cats will depend on close monitoring and frequent reassessment.

Wound management in patients with advanced illness.

PubMed

Maida, Vincent

2013-03-01

To emphasize that the management of wounds represents a significant component within the overall supportive and palliative care of patients with advanced illness. It is also intended to clarify the linguistics that are commonly used around patients with wounds. New paradigms for wound management, wound outcomes, and goal setting have been defined and graphically depicted. Recent studies show that wounds may be used as prognostic factors for patients with advanced illness. Data from recent studies also demonstrate that marginal levels of wound healing are possible for all wound classes affecting patients with advanced illness. When indicated, time-limited trials of wound healing strategies should be facilitated by the Wound Bed Preparation Paradigm. Wound palliation may be guided through the use of the Toronto Symptom Assessment System for Wounds (TSAS-W). Wound management must continue to evolve as a tenet within the overall supportive and palliative care of patients with advanced illness.

Preferences for Life-Sustaining Treatments and Associations With Accurate Prognostic Awareness and Depressive Symptoms in Terminally Ill Cancer Patients' Last Year of Life.

PubMed

Tang, Siew Tzuh; Wen, Fur-Hsing; Hsieh, Chia-Hsun; Chou, Wen-Chi; Chang, Wen-Cheng; Chen, Jen-Shi; Chiang, Ming-Chu

2016-01-01

The stability of life-sustaining treatment (LST) preferences at end of life (EOL) has been established. However, few studies have assessed preferences more than two times. Furthermore, associations of LST preferences with modifiable variables of accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms have been investigated in cross-sectional studies only. To explore longitudinal changes in LST preferences and their associations with accurate prognostic awareness, physician-patient EOL care discussions, and depressive symptoms in terminally ill cancer patients' last year. LST preferences (cardiopulmonary resuscitation, intensive care unit [ICU] care, intubation, and mechanical ventilation) were measured approximately every two weeks. Changes in LST preferences and their associations with independent variables were examined by hierarchical generalized linear modeling with logistic regression. Participants (n = 249) predominantly rejected cardiopulmonary resuscitation, ICU care, intubation, and mechanical ventilation at EOL without significant changes as death approached. Patients with inaccurate prognostic awareness were significantly more likely than those with accurate understanding to prefer ICU care, intubation, and mechanical ventilation than to reject these LSTs. Patients with more severe depressive symptoms were less likely to prefer ICU care and to be undecided about wanting ICU care and mechanical ventilation than to reject such LSTs. LST preferences were not associated with physician-patient EOL care discussions, which were rare in our sample. LST preferences are stable in cancer patients' last year. Facilitating accurate prognostic awareness and providing adequate psychological support may counteract the increasing trend for aggressive EOL care and minimize emotional distress during EOL care decisions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights

Illness Perception of Patients with Functional Gastrointestinal Disorders.

PubMed

Xiong, Na-Na; Wei, Jing; Ke, Mei-Yun; Hong, Xia; Li, Tao; Zhu, Li-Ming; Sha, Yue; Jiang, Jing; Fischer, Felix

2018-01-01

To investigate the illness perception characteristics of Chinese patients with functional gastrointestinal disorders (FGID), and the mediating role between symptoms, psychopathology, and clinical outcomes. Six illness groups from four outpatient departments of a general hospital in China were recruited, including the FGID patient group. The modified and validated Chinese version of the illness perception questionnaire-revised was utilized, which contained three sections: symptom identity, illness representation, and causes. The 12-item short-form health survey was utilized to reflect the physical and mental health-related quality of life (HRQoL). The Toronto alexithymia scale was used to measure the severity of alexithymia. Additional behavioral outcome about the frequency of doctor visits in the past 12 months was measured. Pathway analyses with multiple-group comparisons were conducted to test the mediating role of illness perception. Overall, 600 patients were recruited. The illness perceptions of FGID patients were characterized as with broad non-gastrointestinal symptoms (6.8 ± 4.2), a negative illness representation (more chronic course, worse consequences, lower personal and treatment control, lower illness coherence, and heavier emotional distress), and high numbers of psychological and culture-specific attributions. Fit indices of the three hypothesized path models (for physical and mental HRQoL and doctor-visit frequency, respectively) supported the mediating role of illness perceptions. For example, the severity of alexithymia and non-gastrointestinal symptoms had significant negative effect on mental quality of life through both direct (standardized effect: -0.085 and -0.233) and indirect (standardized effect: -0.045 and -0.231) influence via subscales of consequences, emotional representation, and psychological and risk factor attributions. Multi-group confirmatory factor analysis showed similar psychometric properties for FGID patients and the

Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying.

PubMed

Pino, Marco; Parry, Ruth; Land, Victoria; Faull, Christina; Feathers, Luke; Seymour, Jane

2016-01-01

To examine how palliative medicine doctors engage patients in end-of-life (hereon, EoL) talk. To examine whether the practice of "eliciting and responding to cues", which has been widely advocated in the EoL care literature, promotes EoL talk. Conversation analysis of video- and audio-recorded consultations. Unselected terminally ill patients and their companions in consultation with experienced palliative medicine doctors. Outpatient clinic, day therapy clinic, and inpatient unit of a single English hospice. Doctors most commonly promoted EoL talk through open elaboration solicitations; these created opportunities for patients to introduce-then later further articulate-EoL considerations in such a way that doctors did not overtly ask about EoL matters. Importantly, the wording of elaboration solicitations avoided assuming that patients had EoL concerns. If a patient responded to open elaboration solicitations without introducing EoL considerations, doctors sometimes pursued EoL talk by switching to a less participatory and more presumptive type of solicitation, which suggested the patient might have EoL concerns. These more overt solicitations were used only later in consultations, which indicates that doctors give precedence to patients volunteering EoL considerations, and offer them opportunities to take the lead in initiating EoL talk. There is evidence that doctors treat elaboration of patients' talk as a resource for engaging them in EoL conversations. However, there are limitations associated with labelling that talk as "cues" as is common in EoL communication contexts. We examine these limitations and propose "possible EoL considerations" as a descriptively more accurate term. Through communicating-via open elaboration solicitations-in ways that create opportunities for patients to volunteer EoL considerations, doctors navigate a core dilemma in promoting EoL talk: giving patients opportunities to choose whether to engage in conversations about EoL whilst

Illnesses in siblings of US patients with bipolar disorder relate to multigenerational family history and patients severity of illness.

PubMed

Post, Robert M; Altshuler, Lori L; Kupka, Ralph; McElroy, Susan L; Frye, Mark A; Rowe, Michael; Grunze, Heinz; Suppes, Trisha; Keck, Paul E; Nolen, Willem A

2017-01-01

Patients with bipolar disorder from the US have more early-onset illness and a greater familial loading for psychiatric problems than those from the Netherlands or Germany (abbreviated here as Europe). We hypothesized that these regional differences in illness burden would extend to the patients siblings. Outpatients with bipolar disorder gave consent for participation in a treatment outcome network and for filling out detailed questionnaires. This included a family history of unipolar depression, bipolar disorder, suicide attempt, alcohol abuse/dependence, drug abuse/dependence, and "other" illness elicited for the patients' grandparents, parents, spouses, offspring, and siblings. Problems in the siblings were examined as a function of parental and grandparental problems and the patients' adverse illness characteristics or poor prognosis factors (PPFs). Each problem in the siblings was significantly (p<0.001) more prevalent in those from the US than in those from Europe. In the US, problems in the parents and grandparents were almost uniformly associated with the same problems in the siblings, and sibling problems were related to the number of PPFs observed in the patients. Family history was based on patient report. Increased familial loading for psychiatric problems extends through 4 generations of patients with bipolar disorder from the US compared to Europe, and appears to "breed true" into the siblings of the patients. In addition to early onset, a variety of PPFs are associated with the burden of psychiatric problems in the patients' siblings and offspring. Greater attention to the multigenerational prevalence of illness in patients from the US is indicated. Copyright © 2016 Elsevier B.V. All rights reserved.

Clinicians' Experience with and Attitudes toward Discussing Advance Directives with Terminally Ill Patients and Their Families in a Chinese Community.

PubMed

Luk, Yan; Ngai, Cheong; Chau, Shi San; Lam, Ming Yin Alison; Wong, On Wai; Holm, Marianne

2015-09-01

Although advance directives (ADs) are already exercised in many Western countries, cultural differences surrounding death and dying may potentially pose challenges to the implementation of ADs in a Chinese community. It is therefore relevant to explore the experience with and attitudes towards ADs of health care professionals, who are trained in Western medicine but working in a Chinese cultural setting. Hong Kong represents a unique setting for this. The study objective was to evaluate clinicians' experience with and attitudes towards discussing ADs with terminally ill patients and their families. In this descriptive pilot study, we conducted a cross-sectional questionnaire survey among doctors working in the largest teaching hospital at the University of Hong Kong. Seventy-seven out of 269 doctors working in the surveyed departments completed the questionnaire. The majority of participants (n=72; 94%) indicated willingness to initiate discussions about ADs and 62% (n=48) supported the AD to be recognized as a legally binding document but only 49% (n=38) had past experience of such discussions. Clinicians were generally receptive of the concept of the AD, willing to practice it clinically, and supported its legal recognition. However, AD discussions were an infrequent encounter, hence many clinicians lack experience and are unfamiliar with relevant guidelines. Large-scale studies within the health care professions as well as qualitative studies further exploring potential barriers should follow.

Palliative care needs of terminally ill people living alone: a service provider perspective.

PubMed

Aoun, Samar M; Wall, David; Kristjanson, Linda J; Shahid, Shaouli

2013-01-01

Community-based palliative care services face challenges in meeting the needs of terminally ill clients who live alone without a primary caregiver. Yet, there is a dearth of literature on the perceptions of health service providers (HSPs) regarding the care needs and possible management options to assist this growing group to remain at home. This paper investigated the support needs of people living alone with a terminal illness from a service provider perspective. In depth semi-structured interviews were conducted with nine HSPs from community based services in three Australian states. Four main themes emerged: care challenges, differences in care provision, appropriate approaches to care and essentials for an effective service such as 24 h care, cost-free provision of personal alarm systems, supported and coordinated housekeeping services, funded respite care and financial care packages. HSPs expressed a respect for the autonomy and independence of the clients, yet felt pressured to ensure that safe and attentive care was possible. HSPs recognised the central importance of maintaining the independence and autonomy of palliative care clients living alone. This study is the first in-depth account of what HSPs perceive they need to effectively look after home alone dying clients. The study provided directions to inform service planning for this growing and challenging population group regarding adequate and timely services that will lead to more complying with the clients' wishes, more care being delivered at home, a reduction in hospitalisations, a better quality of life and a capacity to die at home.

Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying

PubMed Central

Parry, Ruth; Land, Victoria; Faull, Christina; Feathers, Luke; Seymour, Jane

2016-01-01

Objective To examine how palliative medicine doctors engage patients in end-of-life (hereon, EoL) talk. To examine whether the practice of “eliciting and responding to cues”, which has been widely advocated in the EoL care literature, promotes EoL talk. Design Conversation analysis of video- and audio-recorded consultations. Participants Unselected terminally ill patients and their companions in consultation with experienced palliative medicine doctors. Setting Outpatient clinic, day therapy clinic, and inpatient unit of a single English hospice. Results Doctors most commonly promoted EoL talk through open elaboration solicitations; these created opportunities for patients to introduce–then later further articulate–EoL considerations in such a way that doctors did not overtly ask about EoL matters. Importantly, the wording of elaboration solicitations avoided assuming that patients had EoL concerns. If a patient responded to open elaboration solicitations without introducing EoL considerations, doctors sometimes pursued EoL talk by switching to a less participatory and more presumptive type of solicitation, which suggested the patient might have EoL concerns. These more overt solicitations were used only later in consultations, which indicates that doctors give precedence to patients volunteering EoL considerations, and offer them opportunities to take the lead in initiating EoL talk. There is evidence that doctors treat elaboration of patients’ talk as a resource for engaging them in EoL conversations. However, there are limitations associated with labelling that talk as “cues” as is common in EoL communication contexts. We examine these limitations and propose “possible EoL considerations” as a descriptively more accurate term. Conclusions Through communicating–via open elaboration solicitations–in ways that create opportunities for patients to volunteer EoL considerations, doctors navigate a core dilemma in promoting EoL talk: giving

Hypophosphatemia in critically ill patients.

PubMed

Suzuki, Satoshi; Egi, Moritoki; Schneider, Antoine G; Bellomo, Rinaldo; Hart, Graeme K; Hegarty, Colin

2013-08-01

The aim of this study was to assess the association of phosphate concentration with key clinical outcomes in a heterogeneous cohort of critically ill patients. This was a retrospective observational study at a general intensive care unit (ICU) of an Australian university teaching hospital enrolling 2730 adult critically ill patients. We studied 10504 phosphate measurements with a mean value of 1.17 mmol/L (measurements every 28.8 hours on average). Hyperphosphatemia (inorganic phosphate [iP] concentration > 1.4 mmol/L) occurred in 45% and hypophosphatemia (iP ≤ 0.6 mmol/L) in 20%. Among patients without any episodes of hyperphosphatemia, patients with at least 1 episode of hypophosphatemia had a higher ICU mortality than those without hypophosphatemia (P = .004). In addition, ICU nonsurvivors had lower minimum phosphate concentrations than did survivors (P = .009). Similar results were seen for hospital mortality. However, on multivariable logistic regression analysis, hypophosphatemia was not independently associated with ICU mortality (adjusted odds ratio, 0.86 [95% confidence interval, 0.66-1.10]; P = .24) and hospital mortality (odds ratio, 0.89 [0.73-1.07]; P = .21). Even when different cutoff points were used for hypophosphatemia (iP ≤ 0.5, 0.4, 0.3, or 0.2 mmol/L), hypophosphatemia was not an independent risk factor for ICU and hospital morality. In addition, timing of onset and duration of hypophosphatemia were not independent risk factor for ICU and hospital mortality. Hypophosphatemia behaves like a general marker of illness severity and not as an independent predictor of ICU or in-hospital mortality in critically ill patients. Copyright © 2013 Elsevier Inc. All rights reserved.

Significance of End-of-life Dreams and Visions Experienced by the Terminally Ill in Rural and Urban India.

PubMed

Dam, Abhijit Kanti

2016-01-01

End-of-life dreams and visions (ELDVs) are not uncommon and are experienced by many near the time of death. These visions can occur months, weeks, days or hours before death. We wanted to document ELDVs, if any, in rural and urban settings in India, where talking about death is usually considered a taboo and also to compare its incidence with the urban population. Do terminally ill patients receiving home care in rural and urban India experience ELDVs? If yes, then an enquiry into the nature of such ELDVs. Prospective, cohort based, with a mixed-methods research design. 60 terminally ill patients with Palliative Performance Scale of <40, who consented to participate in the study were enrolled and questioned about the occurrence of ELDVs if any. Questions were both closed-ended and open ended regarding the content, frequency, recall, associated symptom burden, etc. 63.3% cases reported experiencing ELDVs. 55.5% of the rural patients reported ELDVs while 66.6% of the urban patients did the same. 78.9% (30) of the subjects were able to recall the ELDVs vividly and in detail, 13.1% (5) subjects were able to recall somewhat and 7.8% (3) subjects had trouble in recalling them. 84.2% (32) subjects reported the ELDVs as 'distressing'. 30 subjects (78.9%) reported seeing 'deceased' people, be it relatives, friends or acquaintances. 12 (31.5%) saw living friends and relatives, 52.6% (20) saw people or forms that they did not recognize, 21% (8) visualized making preparations or going on a journey. 76.3% (29) patients had a symptom burden of >7 (on a VAS of 1-10), which corresponded to 'severe distress'. 94.7% (36) patients felt much better having discussed their ELDVs with the team. The results of our study suggest that ELDVs are not uncommon in India and the incidence does not differ significantly between rural and urban population. Our subjects found them to be distressing initially, but felt better after discussing it with our team. There was a direct correlation between

Significance of End-of-life Dreams and Visions Experienced by the Terminally Ill in Rural and Urban India

PubMed Central

Dam, Abhijit Kanti

2016-01-01

Background: End-of-life dreams and visions (ELDVs) are not uncommon and are experienced by many near the time of death. These visions can occur months, weeks, days or hours before death. We wanted to document ELDVs, if any, in rural and urban settings in India, where talking about death is usually considered a taboo and also to compare its incidence with the urban population. Principle Research Question: Do terminally ill patients receiving home care in rural and urban India experience ELDVs? If yes, then an enquiry into the nature of such ELDVs. Study Design: Prospective, cohort based, with a mixed-methods research design. Methodology: 60 terminally ill patients with Palliative Performance Scale of <40, who consented to participate in the study were enrolled and questioned about the occurrence of ELDVs if any. Questions were both closed-ended and open ended regarding the content, frequency, recall, associated symptom burden, etc. Results: 63.3% cases reported experiencing ELDVs. 55.5% of the rural patients reported ELDVs while 66.6% of the urban patients did the same. 78.9% (30) of the subjects were able to recall the ELDVs vividly and in detail, 13.1% (5) subjects were able to recall somewhat and 7.8% (3) subjects had trouble in recalling them. 84.2% (32) subjects reported the ELDVs as 'distressing'. 30 subjects (78.9%) reported seeing 'deceased' people, be it relatives, friends or acquaintances. 12 (31.5%) saw living friends and relatives, 52.6% (20) saw people or forms that they did not recognize, 21% (8) visualized making preparations or going on a journey. 76.3% (29) patients had a symptom burden of >7 (on a VAS of 1-10), which corresponded to 'severe distress'. 94.7% (36) patients felt much better having discussed their ELDVs with the team. Conclusions: The results of our study suggest that ELDVs are not uncommon in India and the incidence does not differ significantly between rural and urban population. Our subjects found them to be distressing initially

Nitrogen Balance and Protein Requirements for Critically Ill Older Patients.

PubMed

Dickerson, Roland N

2016-04-18

Critically ill older patients with sarcopenia experience greater morbidity and mortality than younger patients. It is anticipated that unabated protein catabolism would be detrimental for the critically ill older patient. Healthy older subjects experience a diminished response to protein supplementation when compared to their younger counterparts, but this anabolic resistance can be overcome by increasing protein intake. Preliminary evidence suggests that older patients may respond differently to protein intake than younger patients during critical illness as well. If sufficient protein intake is given, older patients can achieve a similar nitrogen accretion response as younger patients even during critical illness. However, there is concern among some clinicians that increasing protein intake in older patients during critical illness may lead to azotemia due to decreased renal functional reserve which may augment the propensity towards worsened renal function and worsened clinical outcomes. Current evidence regarding protein requirements, nitrogen balance, ureagenesis, and clinical outcomes during nutritional therapy for critically ill older patients is reviewed.

Nitrogen Balance and Protein Requirements for Critically Ill Older Patients

PubMed Central

Dickerson, Roland N.

2016-01-01

Critically ill older patients with sarcopenia experience greater morbidity and mortality than younger patients. It is anticipated that unabated protein catabolism would be detrimental for the critically ill older patient. Healthy older subjects experience a diminished response to protein supplementation when compared to their younger counterparts, but this anabolic resistance can be overcome by increasing protein intake. Preliminary evidence suggests that older patients may respond differently to protein intake than younger patients during critical illness as well. If sufficient protein intake is given, older patients can achieve a similar nitrogen accretion response as younger patients even during critical illness. However, there is concern among some clinicians that increasing protein intake in older patients during critical illness may lead to azotemia due to decreased renal functional reserve which may augment the propensity towards worsened renal function and worsened clinical outcomes. Current evidence regarding protein requirements, nitrogen balance, ureagenesis, and clinical outcomes during nutritional therapy for critically ill older patients is reviewed. PMID:27096868

Illness perception differences between Russian- and Hebrew-speaking Israeli oncology patients.

PubMed

Popov, Nadia; Heruti, Irit; Levy, Sigal; Lulav-Grinwald, Doron; Bar-Sela, Gil

2014-03-01

Illness perception influences health and illness behaviors. This study was designed to estimate illness perception differences between Russian-speaking and Hebrew-speaking Israeli oncology patients. Changes in illness perception associated with time spent in Israel among Russian-speaking patients were also evaluated. Additionally, we evaluated differences in illness perception of patients exposed to Chernobyl's consequences. A total of 144 oncology patients (77 Hebrew-speaking, 67 Russian-speaking) completed personal data questionnaires and The illness perception questionnaire revised, translated into Russian for this study. Significantly more Russian-speaking oncology patients perceived their illness as chronic and having negative consequences on life (p < .01). Russian-speaking oncology patients tend to have a more negative perception of cancer compared to Hebrew-speaking patients. Time spent in Israel may create more positive perceptions of cancer among these patients. No illness perception differences were found concerning Chernobyl consequences.

Psychiatric patients awareness of their illnesses and medications.

PubMed

Al Hathloul, Abdullah M; Al Jafer, Mohammad A; Al Fraih, Ibrahim A

2016-01-01

To assess awareness of Saudi psychiatric patients of their illnesses and medications at Prince Sultan Military Medical City (PSMMC). A cross sectional study was conducted at the outpatients clinics of PSMMC, Riyadh, Kingdom of Saudi Arabia from January to December 2012. The study included 647 patients undergoing treatment for their psychiatric illnesses. The patients were interviewed using a structured questionnaire. Most of the adult patients 555 (86.6%) had enough awareness of their diagnosis (58.2%); however, it was insignificant compared with other groups. The adult group (n=301, 87.2%) had more medication knowledge than the younger group (55.8%). Gender association with diagnosis (p≥=0.058) and medications (p≥=0.094) was not quite significant. In education, most of the patients were illiterate, next were secondary school, elementary graduates, intermediate, and university graduated. Most of illiterate and elementary graduates were unaware of both diagnosis and medications, while higher education reflected better diagnosis and medications knowledge, with extreme significance (p<0.000). Illness duration showed a majority in awareness for those with longer periods of illness. Admission times reflected extreme significance (p<0.000) of both levels of awareness. Patient illnesses also showed extreme significance (p=0.000 and p=0.002) of both awareness levels. Although lack of awareness is common, in this study most patients were aware of their diagnosis and medications. Less than half of the patients could neither specify their illnesses nor their medications, which could be attributed to the limited information provided.

Terminal sedation and euthanasia: a comparison of clinical practices.

PubMed

Rietjens, Judith A C; van Delden, Johannes J M; van der Heide, Agnes; Vrakking, Astrid M; Onwuteaka-Philipsen, Bregje D; van der Maas, Paul J; van der Wal, Gerrit

2006-04-10

An important issue in the debate about terminal sedation is the extent to which it differs from euthanasia. We studied clinical differences and similarities between both practices in the Netherlands. Personal interviews were held with a nationwide stratified sample of 410 physicians (response rate, 85%) about the most recent cases in which they used terminal sedation, defined as administering drugs to keep the patient continuously in deep sedation or coma until death without giving artificial nutrition or hydration (n = 211), or performed euthanasia, defined as administering a lethal drug at the request of a patient with the explicit intention to hasten death (n = 123). We compared characteristics of the patients, the decision-making process, and medical care of both practices. Terminal sedation and euthanasia both mostly concerned patients with cancer. Patients receiving terminal sedation were more often anxious (37%) and confused (24%) than patients receiving euthanasia (15% and 2%, respectively). Euthanasia requests were typically related to loss of dignity and a sense of suffering without improving, whereas requesting terminal sedation was more often related to severe pain. Physicians applying terminal sedation estimated that the patient's life had been shortened by more than 1 week in 27% of cases, compared with 73% in euthanasia cases. Terminal sedation and euthanasia both are often applied to address severe suffering in terminally ill patients. However, terminal sedation is typically used to address severe physical and psychological suffering in dying patients, whereas perceived loss of dignity during the last phase of life is a major problem for patients requesting euthanasia.

Rational suicide among patients who are terminally ill.

PubMed

Valente, S M; Trainor, D

1998-08-01

Patients' end-of-life decisions challenge nurses. Often, aggressive, life prolonging strategies create ethical dilemmas for nurses when patients decide to stop treatment. In Oregon, assisted suicide is legal and will have a profound effect on nursing practice. When a patient considers suicide, nurses need to examine the patient's mental health, symptom management, and rational decision-making ability. Evaluation of suicide risk is a priority. Nurses need to recognize that medical land psychological symptoms often trigger thoughts of suicide, but prompt treatment of pain and symptoms also reduces suicide risk. Ethical issues and guidelines for management of patients considering suicide and evaluation of rationality are presented.

The development of a model of dignity in illness based on qualitative interviews with seriously ill patients.

PubMed

van Gennip, Isis E; Pasman, H Roeline W; Oosterveld-Vlug, Mariska G; Willems, Dick L; Onwuteaka-Philipsen, Bregje D

2013-08-01

While knowledge on factors affecting personal dignity of patients nearing death is quite substantial, far less is known about how patients living with a serious disease understand dignity. To develop a conceptual model of dignity that illuminates the process by which serious illness can undermine patients' dignity, and that is applicable to a wide patient population. Qualitative interview study. 34 patients with either cancer, early stage dementia, or a severe chronic illness were selected from an extensive cohort study into advance directives. In-depth interviews were carried out exploring the experiences of seriously ill patients with regard to their personal dignity. The interview transcripts were analyzed using thematic analysis and a conceptual model was constructed based on the resulting themes. We developed a two-step dignity model of illness. According to this model, illness related conditions do not affect patients' dignity directly but indirectly by affecting the way patients perceive themselves. We identified three components shaping self-perception: (a) the individual self: the subjective experiences and internally held qualities of the patient; (b) the relational self: the self within reciprocal interaction with others; and, (c) the societal self: the self as a social object in the eyes of others. The merits of the model are two-folded. First, it offers an organizing framework for further research into patients' dignity. Secondly, the model can serve to facilitate care for seriously ill patients in practice by providing insight into illness and dignity at the level of the individual patient where intervention can be effectively targeted. Copyright © 2013 Elsevier Ltd. All rights reserved.

[Enteral nutrition and the critically ill patient].

PubMed

Planas, M

1999-09-01

Critically ill patients often suffer from malnutrition y loss of muscle weight throughout the whole time they are ill, even when they receive nutritional therapy, due to the tremendous amount of stress they undergo accompanied by a high degree of hypercatabolism. The most recent theories all coincide in the importance of the intestine as the preferred way for nutrients to enter the bodies of these patients because besides fulfilling its function to absorb and digest nutrients, the intestine plays an important role as a barrier to bacteria and their toxins. For these reasons, enteral nutrition should be the first option to consider whenever we must feed a critically ill patient by artificial means.

Illness perceptions predict survival in haemodialysis patients.

PubMed

Chilcot, Joseph; Wellsted, David; Farrington, Ken

2011-01-01

Illness perceptions have been shown to be important determinants of functional and psychosocial outcomes, including quality of life and treatment adherence in end-stage renal disease patients. The aim of this prospective study was to determine whether haemodialysis patients' illness perceptions impact upon survival. Haemodialysis patients from a UK renal service completed the Revised Illness Perception Questionnaire. Over the study period (May 2007 to December 2010), all-cause mortality was recorded as the endpoint. 223 patients were followed up for a median of 15.9 months (min. 10 days, max. 42.7 months). The median dialysis vintage was 17.6 months (min. 4 days, max. 391.3 months). Treatment control perceptions demonstrated a significant association with mortality (HR = 0.91, 95% CI: 0.83-0.99, p = 0.03). After controlling for covariates, including age, albumin, extra renal comorbidity and depression scores, perception of treatment control remained a significant predictor of mortality (HR = 0.89, 95% CI: 0.80-0.99, p = 0.03). Patients' perceptions of treatment control (dialysis therapy) predict survival independently of survival risk factors, including comorbidity. Studies are required to test whether psychological interventions designed to modify maladaptive illness perceptions influence clinical outcomes in this patient setting. Copyright © 2011 S. Karger AG, Basel.

Barriers and facilitators to care for the terminally ill: a cross-country case comparison study of Canada, England, Germany, and the United States.

PubMed

Klinger, Christopher A; Howell, Doris; Zakus, David; Deber, Raisa B

2014-02-01

Why do many patients not die at their preferred location? Analyze system-level characteristics influencing the ability to implement best practices in delivering care for terminally ill adults (barriers and facilitators). Cross-country comparison study from a "most similar-most different" perspective, triangulating evidence from a scoping review of the literature, document analyses, and semi-structured key informant interviews. Case study of Canada, England, Germany, and the United States. While similar with regard to leading causes of death, patient needs, and potential avenues to care, different models of service provision were employed in the four countries studied. Although hospice and palliative care services were generally offered with standard care along the disease continuum and in various settings, and featured common elements such as physical, psycho-social, and spiritual care, outcomes (access, utilization, etc.) varied across jurisdictions. Barriers to best practice service provision included legislative (including jurisdictional), regulatory (e.g. education and training), and financial issues as well as public knowledge and perception ("giving up hope") challenges. Advance care planning, dedicated and stable funding toward hospice and palliative care, including caregiver benefits, population aging, and standards of practice and guidelines to hospice and palliative care, were identified as facilitators. Successful implementation of effective and efficient best practice approaches to care for the terminally ill, such as shared care, requires concerted action to align these system-level characteristics; many factors were identified as being essential but not sufficient. Policy implementation needs to be tailored to the respective health-care system(s), monitored, and fine-tuned.

The Adolescent with a Life-Threatening Illness: Cultural Myths and Social Realities.

ERIC Educational Resources Information Center

Nannis, Ellen D.; And Others

This paper discusses the attitudes of terminally ill adolescent patients towards their illness and their behaviors during their treatment. Preliminary results are reported on an ongoing study of 12 boys and six girls (age 8-21) with metastatic pediatric solid tumors and lymphomas that failed to respond to conventional treatment. Interviews of…

Respiratory Therapists' Experiences and Attitudes Regarding Terminal Extubations and End-of-Life Care.

PubMed

Grandhige, Anjali P; Timmer, Marjorie; O'Neill, Michael J; Binney, Zachary O; Quest, Tammie E

2016-07-01

Respiratory therapists (RTs) routinely care for patients with life-limiting illnesses and in some hospitals are responsible for terminal extubations. Data on how such experiences affect RTs are scarce. The objective of this work was to survey RTs at 2 academic medical centers about their experiences caring for patients with terminal extubations. An online survey was distributed to the hospitals' RTs. Survey data included demographics and experiences with end-of-life care and terminal extubations. The survey was derived from previously published questionnaires plus input from hospital RT leaders. Sixty-five of 173 RTs (37.6%) responded. Of these, 42.4% were ≥50 y old, and 62.7% were female. 20.3% had ≤5 y experience; 52.5% had ≥16 y. 93.8% self-reported being involved in at least one terminal extubation; of those, 36.1% reported performing ≥20. Nearly half (47.5%) wanted to be involved in family meetings discussing terminal extubations, but just 6.6% were frequently involved. Only 32.3% felt that they received adequate education regarding terminal illness in RT school; 32.3% reported gathering this knowledge while working. 60.0% wanted more formal education around terminal patient care. 27.9% reported sometimes being uncomfortable with performing a terminal extubation; most of these rarely felt that they had the option not to perform the extubation. RTs are rarely involved in end-of-life discussions despite a desire to be, and they experience situations that generate discomfort. There is demand for more formal RT training around care for terminal patients. Clinical protocols that involve RTs in meetings before ventilator withdrawal should be considered. Copyright © 2016 by Daedalus Enterprises.

Strategies to enhance patient recruitment and retention in research involving patients with a first episode of mental illness.

PubMed

Furimsky, Ivana; Cheung, Amy H; Dewa, Carolyn S; Zipursky, Robert B

2008-11-01

Recruitment and retention of research participants is often the most labor-intensive and difficult component of clinical trials. Poor recruitment and retention frequently pose as a major barrier in the successful completion of clinical trials. In fact, many studies are prematurely terminated, or their findings questioned due to low recruitment and retention rates. The conduct of clinical trials involving youth with a first episode of mental illness comes with additional challenges in recruitment and retention including barriers associated with engagement and family involvement. To develop effective early interventions for first episode mental illness, it is necessary to develop strategies to enhance recruitment and retention in this patient population. This article presents the recruitment and retention challenges experienced in two clinical trials: one involving participants experiencing a first episode of depression and one involving participants experiencing a first episode psychosis. Challenges with recruitment and retention are identified and reviewed at both the patient level and clinician level. Strategies that were implemented to enhance recruitment and retention in these two studies are also discussed. Finally, ethical issues to consider when implementing these strategies are also highlighted.

Is refeeding syndrome relevant for critically ill patients?

PubMed

Koekkoek, Wilhelmina A C; Van Zanten, Arthur R H

2018-03-01

To summarize recent relevant studies regarding refeeding syndrome (RFS) in critically ill patients and provide recommendations for clinical practice. Recent knowledge regarding epidemiology of refeeding syndrome among critically ill patients, how to identify ICU patients at risk, and strategies to reduce the potential negative impact on outcome are discussed. RFS is a potentially fatal acute metabolic derangement that ultimately can result in marked morbidity and even mortality. These metabolic derangements in ICU patients differ from otherwise healthy patients with RFS, as there is lack of anabolism. This is because of external stressors inducing a hypercatabolic response among other reasons also reflected by persistent high glucagon despite initiation of feeding. Lack of a proper uniform definition complicates diagnosis and research of RFS. However, refeeding hypophosphatemia is commonly encountered during critical illness. The correlations between risk factors proposed by international guidelines and the occurrence of RFS in ICU patients remains unclear. Therefore, regular phosphate monitoring is recommended. Based on recent trials among critically ill patients, only treatment with supplementation of electrolytes and vitamins seems not sufficient. In addition, caloric restriction for several days and gradual increase of caloric intake over days is recommendable.

Dysfunctional beliefs about symptoms and illness in patients with hypochondriasis.

PubMed

Weck, Florian; Neng, Julia M B; Richtberg, Samantha; Stangier, Ulrich

2012-01-01

The cognitive model and empirical research underline the importance of dysfunctional beliefs about bodily symptoms and illness in health anxiety and hypochondriasis. However, specificity of such beliefs has not yet been adequately demonstrated for patients with hypochondriasis. This study examined whether dysfunctional beliefs about bodily symptoms and illness are elevated in comparison to patients with anxiety disorders and, therefore, specific for patients with hypochondriasis. Patients with hypochondriasis (n = 38), patients with anxiety disorders (n = 40), and healthy controls (n = 42) completed the Symptom and Outcomes Scale (SOS) measuring participants' estimation of the likelihood of various symptoms being indicative of a particular illness. Additionally, participants' general psychopathology (Brief Symptom Inventory), depressive (Beck Depression Inventory-II), and anxiety symptoms (Beck Anxiety Inventory) were evaluated. In comparison to patients with anxiety disorders and healthy controls, patients with hypochondriasis estimated bodily symptoms to be more likely an indicator for a catastrophic illness. Patients with anxiety disorders took a middle position between patients with hypochondriasis and healthy controls. Regarding the estimation of the likelihood of symptoms indicating a minor illness, no differences were found between the three groups. Dysfunctional beliefs about symptoms and illness are important and specific for patients with hypochondriasis, which is in line with the cognitive model. In order to reduce misinformation about serious illnesses in patients with hypochondriasis, more attention should be paid to psychoeducational strategies. Copyright © 2012 The Academy of Psychosomatic Medicine. Published by Elsevier Inc. All rights reserved.

Illness perceptions and coping determine quality of life in COPD patients.

PubMed

Tiemensma, Jitske; Gaab, Erin; Voorhaar, Maarten; Asijee, Guus; Kaptein, Adrian A

2016-01-01

A key goal of chronic obstructive pulmonary disease (COPD) care is to improve patients' quality of life (QoL). For outcomes such as QoL, illness perceptions and coping are important determinants. The primary aim was to assess the associations between illness perceptions, coping and QoL in COPD patients. A secondary aim was to compare illness perceptions and coping of patients with reference values derived from the literature. A total of 100 patients were included in the study. Patients were asked to complete the Brief Illness Perception Questionnaire (B-IPQ), the Utrecht Proactive Coping Competence scale (UPCC), and a QoL item. Correlations and linear regression models were used to analyze the data. Student's t-tests were used to compare patients with COPD with reference values derived from the literature. Patients with better understanding of COPD utilized more proactive coping strategies (P=0.04). A more intense emotional response to COPD was related to less proactive coping (P=0.02). Patients who reported using more proactive coping techniques also reported to have a better QoL (P<0.01). Illness perceptions were also related to QoL: more positive illness perceptions were related to a better QoL (all P<0.05). Patients with COPD reported more negative illness perceptions than people with a common cold or patients with asthma (all P<0.01), but reported similar perceptions compared with patients with diabetes. Patients with COPD reported a moderate QoL, but appeared to be proficient in proactive coping. Illness perceptions, coping, and QoL were all associated with each other. Patients reported more strongly affected illness perceptions compared to people with a cold and patients with asthma. We postulate that a self-management intervention targeting patients' illness perceptions leads to improved QoL.

Pressure ulcer prevention in patients with advanced illness.

PubMed

White-Chu, E Foy; Reddy, Madhuri

2013-03-01

Pressure ulcers can be challenging to prevent, particularly in patients with advanced illnesses. This review summarizes the relevant literature since 2011. Through a MEDLINE and CINAHL database search from January 1, 2011 to June 1, 2012, a total of 14 abstracts were found addressing the prevention of pressure ulcers in persons with advanced illness. Search terms included pressure ulcer, prevention, and control. Advanced illness was defined as patients transitioning from curative to supportive and palliative care. Ten original studies and four review articles specifically addressed pressure ulcer prevention. There were four articles that specifically addressed patients with advanced illness. The studies varied in quality. One systematic review, one randomized controlled trial, three prospective trials, two retrospective trials, one cost-effectiveness analysis, one quality improvement project, one comparative descriptive design, and four review articles were found. The interventions for pressure ulcer prevention were risk assessment, repositioning, surface selection, nutritional support and maintenance of skin integrity with or without incontinence. The quality of pressure ulcer prevention studies in persons with advanced illness is poor. Increased number and higher quality studies are needed to further investigate this important topic for these fragile patients.

Health care utilization during terminal child illness in squatter settlements of Karachi.

PubMed

Hasan, I J; Khanum, A

2000-12-01

Information on health seeking behavior and health care utilization has important policy implications in health systems development. The paper presents some of the issues related to health care utilization and health seeking behavior in case of terminal child illness in seven squatter settlements of Karachi. From seven squatter settlements of Karachi, with a population of 100,000 approximately, we collected information, using pretested structured questionnaire, from the mothers on health care utilization during the final illness of under five children dying during 1995-1996. These deaths were identified from an earlier baseline health and demographic survey in these areas. Interviews were completed for 259 infant and child deaths of which 57% were boys. Of all deaths 72% were taken to a health care provider, of which 82% went as soon as the child got ill. Private sector is the most preferred first choice i.e., 83%. Of all those who had been to a health care provider, 65% were referred to some other place and 72% of them took more than 12 hours altogether to reach the referred facility. Children in older age categories (OR 4.4 95% CI 2.22-8.67 and OR 5.0, 95% CI 2.09-12.31), boys (OR 2.6, 95% CI 1.46-4.77) and those with appropriate or incomplete immunization (OR 4.1, 95% CI 2.13-7.94) were significantly associated with the health care utilization as compared to their counterparts. Living in urban areas does not ensure accessibility to effective health care. In poor urban communities, referral to other facility delay the initiation of effective treatment in case of child illness leading to death which could be prevented otherwise. Private sector constitutes an important segment of our health care system, which requires strengthening and back up support. Furthermore, the study finding is suggestive of gender discrimination in health seeking behavior.

AIDE-Acute Illness and Depression in Elderly Patients. Cognitive Behavioral Group Psychotherapy in Geriatric Patients With Comorbid Depression: A Randomized, Controlled Trial.

PubMed

Hummel, Jana; Weisbrod, Cecilia; Boesch, Leila; Himpler, Katharina; Hauer, Klaus; Hautzinger, Martin; Gaebel, Andrea; Zieschang, Tania; Fickelscherer, Andrea; Diener, Slawomira; Dutzi, Ilona; Krumm, Bertram; Oster, Peter; Kopf, Daniel

2017-04-01

Comorbid depression is highly prevalent in geriatric patients and associated with functional loss, frequent hospital re-admissions, and a higher mortality rate. Cognitive behavioral psychotherapy (CBT) has shown to be effective in older depressive patients living in the community. To date, CBT has not been applied to older patients with acute physical illness and comorbid depression. To evaluate the effectiveness of CBT in depressed geriatric patients, hospitalized for acute somatic illness. Randomized controlled trial with waiting list control group. Postdischarge intervention in a geriatric day clinic; follow-up evaluations at the patients' homes. A total of 155 randomized patients, hospitalized for acute somatic illness, aged 82 ± 6 years and suffering from depression [Hospital Anxiety and Depression Scale (HADS) scores >7]. Exclusion criteria were dementia, delirium, and terminal state of medical illness. Fifteen, weekly group sessions based on a CBT manual. Commencement of psychotherapy immediately after discharge in the intervention group and a 4-month waiting list interval with usual care in the control group. HADS depression total score after 4 months. Secondary endpoints were functional, cognitive, psychosocial and physical status, resource utilization, caregiver burden, and amount of contact with physician. The intervention group improved significantly in depression scores (HADS baseline 18.8; after 4 months 11.4), whereas the control group deteriorated (HADS baseline 18.1; after 4 months 21.6). Significant improvement in the intervention group, but not in the control group, was observed for most secondary outcome parameters such as the Barthel and Karnofsky indexes. Intervention effects were less pronounced in patients with cognitive impairment or acute fractures. CBT is feasible and highly effective in geriatric patients. The benefits extend beyond effective recovery and include improvement in physical and functional parameters. Early diagnosis

Patients´ Variations of Reflection About and Understanding of Long-Term Illness- Impact of Illness Perception on Trust in Oneself or Others

PubMed Central

Nunstedt, Håkan; Rudolfsson, Gudrun; Alsen, Pia; Pennbrant, Sandra

2017-01-01

Background: Patients' understanding of their illness is of great importance for recovery. Lacking understanding of the illness is linked with the patients' level of reflection about and interest in understanding their illness. Objective: To describe patients’ variations of reflection about and understanding of their illness and how this understanding affects their trust in themselves or others. Method: The study is based on the “Illness perception” model. Latent content analysis was used for the data analysis. Individual, semi-structured, open-ended and face-to-face interviews were conducted with patients (n=11) suffering from a long-term illness diagnosed at least six months prior to the interview. Data collection took place in the three primary healthcare centres treating the participants. Results: The results show variations in the degree of reflection about illness. Patients search for deeper understanding of the illness for causal explanations, compare different perspectives for preventing complication of their illness, trust healthcare providers, and develop own strategies to manage life. Conclusion: Whereas some patients search for deeper understanding of their illness, other patients are less reflective and feel they can manage the illness without further understanding. Patients' understanding of their illness is related to their degree of trust in themselves or others. Patients whose illness poses an existential threat are more likely to reflect more about their illness and what treatment methods are available. PMID:28567169

An examination of anxiety levels of nursing students caring for patients in terminal period

PubMed Central

Sancar, Behire; Yalcin, Ayse Saba; Acikgoz, Inci

2018-01-01

Objective: To investigate the anxiety levels of the nursing students who are caring for the patients in the terminal period and to determine whether there is a difference between 3rd, 4th grade in this direction. Methods: A 40-item “State and Trait Anxiety Scale” was used together with the questionnaire on “Determining the Level of Anxiety Levels of Nursing Students Caring for the Patient at the Terminal Period” for determining the data. Results: The mean scores and standard deviations of all students from the state and trait anxiety scales were respectively 41.95±5.06, 48.15±5.44. Averages of 3rd state anxiety scale score was 42.03 ± 5.26, trait anxiety scale averages were 48.08 ± 5.59; Averages of 4th state anxiety scale score was 41.85 ± 4.83, trait anxiety scale averages were 48.24 ± 5.30. Conclusion: In our study, it was found that there wasn't significant difference between the 3rd, 4th grade students related to ill patient care in terms of high level of state and trait anxiety during communication and patient care. The state and trait anxiety scores of the students in both grades were found to be higher than the average scores of the scale's previous applications. PMID:29643886

Religious faith in coping with terminal cancer: what is the nursing experience?

PubMed

Granero-Molina, J; Díaz Cortés, M M; Márquez Membrive, J; Castro-Sánchez, A M; López Entrambasaguas, O M; Fernández-Sola, C

2014-05-01

This qualitative study describes nurses' reports on the role played by religious faith in the care of patients with terminal cancer. Using Gadamer's philosophical hermeneutics and C. Roy's adaptation model as a base, in-depth interviews were carried out with 23 nurses who had cared for patients with terminal cancer for at least 6 months. Three main themes emerged when a Gadamerian-based hermeneutic research method was applied: faith facilitates the coping process in cases of terminal cancer, faith hinders the coping process in cases of terminal cancer and terminal illness impacts faith. The lack of univocal results indicates that the role of faith in coping with death is essentially practical, individualised and changeable. The nurse-patient relationship can help to determine the spiritual needs of cancer patients at the end of life. This source of knowledge held by the nurse, together with the rest of the multidisciplinary team, can help to improve end-of-life care. © 2013 John Wiley & Sons Ltd.

Life threatening illness in popular movies-a first descriptive analysis.

PubMed

Drukarczyk, Laura; Klein, Carsten; Ostgathe, Christoph; Stiel, Stephanie

2014-01-01

In the last two decades, public attention towards illness, dying and death has evolved. In particular, advance care planning, living wills, end-of-life care, and autonomy are increasingly discussed. How this change in public awareness has influenced the presentation of dying and death in cinema needs clarification. Over a one year period, November 2011 until October 2012, a systematic search was conducted to identify movies dealing with incurable diseases produced in 1991-2010 35 movies could be identified and were analyzed in detail and investigated the presentation of illness and death. The number of movies focusing on terminal illness, dying, and death has increased since 1991. The total number of movies that made the yearly German Federal Film Board (FFA) hit list and included a focus on terminal illness, dying, and death increased from 1991 (1 movie) to 2011 (6 movies). The gender of the main characters suffering from terminal illness was distributed equally; three movies portrayed terminally ill children. More than one third of the terminally ill characters died in hospital. The terms "palliative" or "hospice care" were not mentioned once in any films. The number of movies dealing with terminal illness continues to increase and a considerable audience has shown interest in these films. Due to a limited true-to-life performance in the films, a presentation closer to reality could be a major public educational resource.

On Sinking and Swimming: The Dialectic of Hope, Hopelessness, and Acceptance in Terminal Cancer

PubMed Central

Sachs, Emily; Kolva, Elissa; Pessin, Hayley; Rosenfeld, Barry; Breitbart, William

2016-01-01

For terminally ill cancer patients, hope and hopelessness are constructs that significantly impact the quality of life. The aim of this study was to examine the relationship between hope and hopelessness in advanced cancer and to identify factors that maintain hope and increase vulnerability to hopelessness. Semistructured interviews were conducted with 22 terminally ill cancer patients. Interview transcripts were analyzed using thematic content analysis to identify patient definitions of these terms and associated cognitions and emotions. Hope and hopelessness were identified as distinct, often co-occurring, and dialectically interacting constructs. The relationship between hope and hopelessness often balanced on acceptance, perceived as diametrically opposed to hopelessness, and conducive to redirecting hope toward new goals. Positive interpersonal relationships enhanced hope, and uncontrolled physical pain increased vulnerability to hopelessness. PMID:22556280

Diastolic dysfunction in the critically ill patient.

PubMed

Suárez, J C; López, P; Mancebo, J; Zapata, L

2016-11-01

Left ventricular diastolic dysfunction is a common finding in critically ill patients. It is characterized by a progressive deterioration of the relaxation and the compliance of the left ventricle. Two-dimensional and Doppler echocardiography is a cornerstone in its diagnosis. Acute pulmonary edema associated with hypertensive crisis is the most frequent presentation of diastolic dysfunction critically ill patients. Myocardial ischemia, sepsis and weaning failure from mechanical ventilation also may be associated with diastolic dysfunction. The treatment is based on the reduction of pulmonary congestion and left ventricular filling pressures. Some studies have found a prognostic role of diastolic dysfunction in some diseases such as sepsis. The present review aims to analyze thoroughly the echocardiographic diagnosis and the most frequent scenarios in critically ill patients in whom diastolic dysfunction plays a key role. Copyright © 2016 Elsevier España, S.L.U. y SEMICYUC. All rights reserved.

Chronically Critically Ill Patients

PubMed Central

Douglas, Sara L.; Daly, Barbara J.; Kelley, Carol Genet; O’Toole, Elizabeth; Montenegro, Hugo

2007-01-01

Background Chronically critically ill patients often have high costs of care and poor outcomes and thus might benefit from a disease management program. Objectives To evaluate how adding a disease management program to the usual care system affects outcomes after discharge from the hospital (mortality, health-related quality of life, resource use) in chronically critically ill patients. Methods In a prospective experimental design, 335 intensive care patients who received more than 3 days of mechanical ventilation at a university medical center were recruited. For 8 weeks after discharge, advanced practice nurses provided an intervention that focused on case management and interdisciplinary communication to patients in the experimental group. Results A total of 74.0% of the patients survived and completed the study. Significant predictors of death were age (P = .001), duration of mechanical ventilation (P = .001), and history of diabetes (P = .04). The disease management program did not have a significant impact on health-related quality of life; however, a greater percentage of patients in the experimental group than in the control group had “improved” physical health-related quality of life at the end of the intervention period (P = .02). The only significant effect of the intervention was a reduction in the number of days of hospital readmission and thus a reduction in charges associated with readmission. Conclusion The intervention was not associated with significant changes in any outcomes other than duration of readmission, but the supportive care coordination program could be provided without increasing overall charges. PMID:17724242

Bereaved parents' experiences of music therapy with their terminally ill child.

PubMed

Lindenfelser, Kathryn J; Grocke, Denise; McFerran, Katrina

2008-01-01

The purpose of this study was to investigate bereaved parents' experiences of music therapy with their terminally ill child. In-depth interviews were conducted with 7 bereaved parents who were recruited through a community-based palliative care program. The parent participants' experiences varied as their children who received music therapy ranged in ages from 5 months to 12 years old. The interview transcripts were analyzed using phenomenological strategies. Five global themes emerged from the analysis. These included (a) music therapy was valued as a means of altering the child's and family's perception of their situation in the midst of adversity, (b) music therapy was a significant component of remembrance, (c) music therapy was a multifaceted experience for the child and family, (d) music therapy enhanced communication and expression, and (e) parents shared perceptions of and recommendations for improving music therapy services. These emergent themes yield knowledge into the relevance of music therapy within pediatric palliative care.

Effects of a physician-led home care team on terminal care.

PubMed

Zimmer, J G; Groth-Juncker, A; McCusker, J

1984-04-01

Inconsistent results in studies of cost-effectiveness of home health care have led to the need for identification of target populations for whom cost-savings can be anticipated if expanded home care programs are introduced. This analysis of results of a randomized controlled study of efficacy of a physician/geriatric nurse practitioner/social worker home care team identifies such a potential target population. The team provides round-the-clock on-call medical services in the home when needed, in addition to usual nursing and other home care services, to home-bound chronically or terminally ill elderly patients. Overall health services utilization and estimated costs were not substantially different for the patients who did not die while in the study; however, for those who did die, team patients had considerably lower rates of hospitalization and overall cost than controls, and more frequently died at home. Of 21 team and 12 control patients who died but had at least two weeks of utilization experience in the study, team patients had about half the number of hospital days compared with controls during the terminal two weeks, and although they had more home care services, had only 69 per cent of the estimated total health care costs of the controls. Satisfaction with care received was significantly greater among the total group of team patients, and especially among their family caretakers, than among controls. This model is effective in providing appropriate medical care for seriously ill and terminal patients, and in enabling them to die at home if they so wish, while at the same time reducing costs of care during the terminal period.

Psychological responses to terminal illness and eventual death in Koreans with cancer.

PubMed

Kang, Kyung-Ah; Miller, Jean R; Lee, Won-Hee

2006-01-01

This qualitative study describes the psychological responses of Korean participants with terminal cancer (stages III-IV) from time of diagnosis to death. Eighteen participants, ages 48 to 73, were interviewed at various phases of dying. Using analytic induction, three categories (nonacceptance, resignation, submission), characteristic patterns of responses over the course of illness and typical responses within categories were generated. Nonaccepters denied the possibility of death while struggling to live; their typical response was resistance. Resigners displayed sorrow, thoughts about their destiny, and growing acceptance of their fate. Their typical response was nonresistance. Submitters were shocked initially, searched for God's will, and prepared for death with hope. Their typical response was hopeful that God would care for them and their families. Participants' ages, physical pain, burden to family, and beliefs played important roles in the patterns of responses.

[Compassionate care for terminally ill term and preterm infants].

PubMed

Schulze, A; Wermuth, I

2007-04-01

Involvement of the family in decisions to withhold or withdraw intensive care and parental involvement in care planning for terminally ill infants does not aggravate or prolong parents' grief responses, their feelings of guilt, or the incidence of pathological grief responses. Effective physical pain and symptom management is critically important. Compassionate care plans, however, need to implement a number of other and equally important components. Parents are not uniform in their perceived needs to make various kinds of contacts with their dying infant. They should be allowed to make their individual choices regarding contact with their baby during that time. The perinatal loss of a twin infant appears to evoke no less serious stress and risks to parents' compared to the loss of a singleton. The disruption of family life during a perinatal loss affects siblings of the baby, and their specific needs should be acknowledged. Post-death or post-autopsy meetings with the family should routinely be scheduled a few weeks after death, and bereavement support should actively be offered. Parents need to be informed about differences to be expected between maternal and paternal grief responses. The risk of pathological grief variants and chronic grief should be mentioned to parents because professional help is required in such occurrence.

The optimal blood glucose level for critically ill adult patients.

PubMed

Lv, Shaoning; Ross, Paul; Tori, Kathleen

2017-09-01

Glycaemic control is recognized as one of the important aspects in managing critically ill patients. Both hyperglycaemia and hypoglycaemia independently increase the risk of patient mortality. Hence, the identification of optimal glycaemic control is of paramount importance in the management of critically ill patients. The aim of this literature review is to examine the current status of glycaemic control in critically ill adult patients. This literature review will focus on randomized controlled trials comparing intensive insulin therapy to conventional insulin therapy, with an objective to identify optimal blood glucose level targets for critically ill adult patients. A literature review was conducted to identify large randomized controlled trials for the optimal targeted blood glucose level for critically ill adult patients published since 2000. A total of eight studies fulfilled the selection criteria of this review. With current human and technology resources, the results of the studies support commencing glycaemic control once the blood glucose level of critically ill patients reaches 10 mmol/L and maintaining this level between 8 mmol/L and 10 mmol/L. This literature review provides a recommendation for targeting the optimal blood glucose level for critically ill patients within moderate blood glucose level target range (8-10 mmol/L). The need for uniformed glucometrics for unbiased reporting and further research for optimal blood glucose target is required, especially in light of new technological advancements in closed-loop insulin delivery and monitoring devices. This literature review has revealed a need to call for consensus in the measurement and reporting of glycaemic control using standardized glucometrics. © 2017 British Association of Critical Care Nurses.

Alcohol-Use Disorders in the Critically Ill Patient

PubMed Central

Jones, Drew G.; Sessler, Curtis N.; Zilberberg, Marya D.; Weaver, Michael F.

2010-01-01

Alcohol abuse and dependence, referred to as alcohol-use disorders (AUDs), affect 76.3 million people worldwide and account for 1.8 million deaths per year. AUDs affect 18.3 million Americans (7.3% of the population), and up to 40% of hospitalized patients have AUDs. This review discusses the development and progression of critical illness in patients with AUDs. In contrast to acute intoxication, AUDs have been linked to increased severity of illness in a number of studies. In particular, surgical patients with AUDs experience higher rates of postoperative hemorrhage, cardiac complications, sepsis, and need for repeat surgery. Outcomes from trauma are worse for patients with chronic alcohol abuse, whereas burn patients who are acutely intoxicated may not have worse outcomes. AUDs are linked to not only a higher likelihood of community-acquired pneumonia and sepsis but also a higher severity of illness and higher rates of nosocomial pneumonia and sepsis. The management of sedation in patients with AUDs may be particularly challenging because of the increased need for sedatives and opioids and the difficulty in diagnosing withdrawal syndrome. The health-care provider also must be watchful for the development of dangerous agitation and violence, as these problems are not uncommonly seen in hospital ICUs. Despite studies showing that up to 40% of hospitalized patients have AUDs, relatively few guidelines exist on the specific management of the critically ill patient with AUDs. AUDs are underdiagnosed, and a first step to improving patient outcomes may lie in systematically and accurately identifying AUDs. PMID:20923804

A Clinical Study on Administration of Opioid Antagonists in Terminal Cancer Patients: 7 Patients Receiving Opioid Antagonists Following Opioids among 2443 Terminal Cancer Patients Receiving Opioids.

PubMed

Uekuzu, Yoshihiro; Higashiguchi, Takashi; Futamura, Akihiko; Ito, Akihiro; Mori, Naoharu; Murai, Miyo; Ohara, Hiroshi; Awa, Hiroko; Chihara, Takeshi

2017-03-01

There have been few detailed reports on respiratory depression due to overdoses of opioids in terminal cancer patients. We investigated the situation of treatment with opioid antagonists for respiratory depression that occurred after administration of opioid at optimal doses in terminal cancer patients, to clarify pathological changes as well as causative factors. In 2443 terminal cancer patients receiving opioids, 7 patients (0.3%) received opioid antagonists: 6, morphine (hydrochloride, 5; sulfate, 1); 1, oxycodone. The median dosage of opioids was 13.3 mg/d, as converted to morphine injection. Respiratory depression occurred on this daily dose in 4 patients and after changed dose and route in 3 patients. Opioids were given through the vein in 6 patients and by the enteral route in 1 patient. Concomitant drugs included nonsteroidal anti-inflammatory drugs in 3 patients and zoledronic acid in 2 patients. In morphine-receiving patients, renal functions were significantly worsened at the time of administration of an opioid antagonist than the day before the start of opioid administration. These findings indicate that the proper use of opioids was safe and acceptable in almost all terminal cancer patients. In rare cases, however, a risk toward respiratory depression onset is indicated because morphine and morphine-6-glucuronide become relatively excessive owing to systemic debility due to disease progression, especially respiratory and renal dysfunctions. At the onset of respiratory depression, appropriate administration of an opioid antagonist mitigated the symptoms. Thereafter, opioid switching or continuous administration at reduced dosages of the same opioids prevented the occurrence of serious adverse events.

Insight and illness perception in Mexican patients with psychosis.

PubMed

Gómez-de-Regil, Lizzette

2015-03-01

Insight and illness perception are two concepts of interest in the study of factors related to clinical outcome in patients with psychosis. Insight implies a risk of emotional distress for the patient. Illness perceptions, regardless of their accuracy, might be favorable or not to illness. Literature provides evidence of significant correlates of these factors with clinical outcome, but they are rarely included in a single study. 1) assessing insight and illness perception in a sample of Mexican patients who have experienced psychosis and, 2) analyzing how insight and illness perception relate to each other and how they relate to clinical status (i.e., positive, negative, and general psychopathology, depression, and anxiety). Sixty-one participants (55.7% females) were recruited from a public psychiatric hospital; insight and illness perceptions were assessed with the SUMD and the Brief-IPQ, respectively. Clinical status was assessed with the PANSS, CDS and BAI scales. Participants showed good insight, favorable illness perceptions for the cognitive and comprehension dimensions, but unfavorable for the emotional dimension. Clinical status of sample was characterized by mild symptoms. Poor insight related to positive symptoms and general psychopathology. Cognitive and emotional perceptions of illness were significantly associated to most clinical status parameters, whereas comprehension showed no significant results. The study not only replicates the significant association on insight and illness perception with clinical outcome, but shows how their patterns of interactions are different, reinforcing the idea that they are two distinct factors worthy of being habitually acknowledged in research and clinical practice.

Perceived illness intrusions among continuous ambulatory peritoneal dialysis patients.

PubMed

Bapat, Usha; Kedlya, Prashanth G

2012-09-01

To study the perceived illness intrusion of continuous ambulatory peritoneal dialysis (CAPD) patients, to examine their demographics, and to find out the association among demographics, duration of illness as well as illness intrusion, 40 chronic kidney disease stage V patients on CAPD during 2006-2007 were studied. Inclusion criteria were patients' above 18 years, willing, stable, and completed at least two months of dialysis. Those with psychiatric co-morbidity were excluded. Sociodemographics were collected using a semi-structured interview schedule. A 14-item illness intrusion checklist covering various aspects of life was administered. The subjects had to rate the illness intrusion in their daily life and the extent of intrusion. The data was analyzed using descriptive statistics and chi square test of association. The mean age of the subjects was 56.05 ± 10.05 years. There was near equal distribution of gender. 82.5% were married, 70.0% belonged to Hindu religion, 45.0% were pre-degree, 25.0% were employed, 37.5% were housewives and 30.0% had retired. 77.5% belonged to the upper socioeconomic strata, 95.0% were from an urban background and 65.0% were from nuclear families. The mean duration of dialysis was 19.0 ± 16.49 months. Fifty-eight percent of the respondents were performing the dialysis exchanges by themselves. More than 95.0%were on three or four exchanges per day. All the 40 subjects reported illness intrusion in their daily life. Intrusion was perceived to some extent in the following areas: health 47.5%, work 25.0%, finance 37.5%, diet 40.0%, and psychological 50.0%. Illness had not intruded in the areas of relationship with spouse 52.5%, sexual life 30.0%, with friends 92.5%, with family 85.5%, social functions 52.5%, and religious functions 75.0%. Statistically significant association was not noted between illness intrusion and other variables. CAPD patients perceived illness intrusion to some extent in their daily life. Elderly, educated

Relationships between perceived diagnostic disclosure, patient characteristics, psychological distress and illness perceptions in Indian cancer patients.

PubMed

Chittem, Mahati; Norman, Paul; Harris, Peter R

2013-06-01

Non-disclosure of a cancer diagnosis is a common practice in many Asian cultures where family-based medical decision making is the norm. The present study sought to compare Indian cancer patients who were aware versus unaware of their cancer diagnosis on a range of patient characteristics, levels of psychological distress and illness perceptions. A sample of 329 Indian cancer patients were interviewed about their understanding of their illness (to assess awareness of a cancer diagnosis) and administered the following measures: the modified Rotterdam Symptom Checklist, the Hospital Anxiety and Depression Scale, and the Brief Illness Perceptions Questionnaire. Demographic and medical details were also obtained. Over half of the sample (54.1%) was unaware of their cancer diagnosis. A logistic regression analysis predicting perceived diagnostic disclosure indicated that awareness of a cancer diagnosis was associated with being involved in medical decisions, receiving multiple treatments, longer treatment durations, greater perceived understanding of one's illness (illness coherence) and citing a cause for one's illness. The results highlight the importance of the context in which decisions about the patient's illness are made (e.g. by whom) as well as illness perceptions relating to patients' understanding of their illness. Copyright © 2012 John Wiley & Sons, Ltd.

Proposal for Development of EBM-CDSS (Evidence-based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients

DTIC Science & Technology

2012-10-01

critically ill patients using artificial neural network synthesised by genetic algorithm,” The Lancet, vol. 347, (no. 9009), pp. 1146-1150, 1996...criterion (Table 2). Statistical Analysis Annual progress report page 46 Data synthesis was conducted according to the study design separately as... synthesis of results across included studies was not performed in the study by Detterbeck and Gibson4 which was undertaken in our study. Another unique

Attitudes Toward Euthanasia for Patients Who Suffer From Physical or Mental Illness.

PubMed

Levin, Kfir; Bradley, Graham L; Duffy, Amanda

2018-01-01

This study examined whether attitudes toward euthanasia vary with type of illness and with the source of the desire to end the patient's life. The study used a 3 (illness type: cancer, schizophrenia, depression) × 2 (euthanasia type: patient-initiated, family-initiated) between-groups experimental design. An online questionnaire was administered to 324 employees and students from a Australian public university following random assignment of participants to one of the six vignette-based conditions. Attitudes toward euthanasia were more positive for patients with a physical illness than a mental illness. For a patient with cancer or depression, but not schizophrenia, approval was greater for patient-, than, family-, initiated euthanasia. Relationships between illness type and attitudes were mediated by perceptions of patient autonomy and illness controllability. Findings have implications for debate, practices, and legislation regarding euthanasia.

Oral intake evaluation in patients following critical illness: an ICU cohort study.

PubMed

Jarden, Rebecca J; Sutton-Smith, Lynsey; Boulton, Catherine

2018-04-16

Timely and adequate nutrition improves health outcomes for the critically ill patient. Despite clinical guidelines recommending early oral nutrition, survivors of critical illness experience significant nutritional deficits. This cohort study evaluates the oral nutrition intake in intensive care unit (ICU) patients who have experienced recent critical illness. The oral nutrition intake of a convenience sample of ICU patients post-critical illness was observed during a 1-month period. Data pertaining to both the amount of oral nutrition intake and factors impacting optimal oral nutrition intake were collected and analysed. Inadequate oral intake was identified in 62% of the 79 patients assessed (n = 49). This was noted early in the ICU stay, around day 1-2, for most of the patients. A significant proportion (25%) of patients remained in the hospital with poor oral intake that persisted beyond ICU day 5. Unsurprisingly, these were the patients who had longer ICU stays. Critical illness weakness was a factor in the assessment of poor oral intake. To conclude, patients who have experienced critical illness also experience suboptimal oral nutrition. The three key factors that were identified as impacting optimal oral nutrition were early removal of nasogastric tubes, critical illness weakness and poor appetite post-critical illness. Seven key recommendations are made based on this cohort study. These recommendations are related to patient assessment, monitoring, documentation and future guidelines. Future research opportunities are highlighted, including the investigation of strategies to improve the transition of patients' post-critical illness to oral nutrition. © 2018 British Association of Critical Care Nurses.

Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series.

PubMed

Noje, Corina; Bernier, Meghan L; Costabile, Philomena M; Klein, Bruce L; Kudchadkar, Sapna R

2017-01-01

To present our single-center's experience with three palliative critical care transports home from the PICU for terminal extubation. We performed a retrospective chart review of patients transported between January 1, 2012, and December 31, 2014. All cases were identified from our institutional pediatric transport database. Patients were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home for terminal extubation and end-of-life care according to their families' wishes. Patients underwent palliative care transport home for terminal extubation. The rate of palliative care transports home for terminal extubation during the study period was 2.6 per 100 deaths. The patients were 7 months, 6 years, and 18 years old and had complex chronic conditions. The transfer process was protocolized. The families were approached by the PICU staff during multidisciplinary goals-of-care meetings. Parental expectations were clarified, and home hospice care was arranged pretransfer. All transports were performed by our pediatric critical care transport team, and all terminal extubations were performed by physicians. All patients had unstable medical conditions and urgent needs for transport to comply with the families' wishes for withdrawal of life support and death at home. As such, all three cases presented similar logistic challenges, including establishing do-not-resuscitate status pretransport, having limited time to organize the transport, and coordinating home palliative care services with available community resources. Although a relatively infrequent practice in pediatric critical care, transport home for terminal extubation represents a feasible alternative for families seeking out-of-hospital end-of-life care for their critically ill technology-dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports to include patient screening tools

[Illness related costs for spouses of patients suffering from a mental illness: results of a study with repeated measurements].

PubMed

Wilms, H-Ulrich; Mory, Claudia; Angermeyer, Matthias C

2004-05-01

Aim of this study is the documentation of illness-associated costs for spouses, whose relative is suffering from a mental illness. Over a period of 12 month, 117 spouses of patients who are suffering from schizophrenia, depression or anxiety disorders repeatedly filled in a standardized questionnaire about illness related expenses and financial losses. 90 % of the spouses reported direct cash expenditures on behalf of the patients' illness. On average, these costs amounted to yearly expenditures of euro 1146 (range: euro 0 - 11 910). Costs did not differ significantly across types of illness and income was not found to be a significant covariate. Spouses reported substantial direct cash expenditures on behalf of the patients' illness. Since these expenditures varied to a large extent over the three points of measurement, repeated measurement designs seem to be a prerequisite for a reliable assessment of illness-associated costs. Since living together with a mentally ill partner is associated with an increased risk of developing a burden-related psychiatric illness for spouses themselves which may lead to double costs and double decreases in income, these aspects should be taken into consideration when planning changes in health policy.

Illness Perceptions in Patients of Schizophrenia: A Preliminary Investigation from Lahore, Pakistan.

PubMed

Hussain, Sadia; Imran, Nazish; Hotiana, Usman Amin; Mazhar, Nauman; Asif, Aftab

2017-01-01

Patient's perception of their illness influences their healthcare decisions. The objectives of this study were to explore patient's own beliefs about their illness (Schizophrenia) and perceived social support, and its impact on their attitudes toward pharmacological treatment in Lahore, Pakistan. This study was conducted at Mayo Hospital Lahore from March to September 2016. Hundred individuals suffering from Schizophrenia completed four questionnaires; a socio-demographic questionnaire, the Illness Perception Questionnaire for Schizophrenia(IPQ-S), Drug attitude Inventory-10 (DAI) and Multidimensional Scale of Perceived Social Support (PSS). Stress, family problems, lack of friends & financial worries were endorsed strongly by patients as cause of their mental illness. Ambiguity regarding their mental illness duration and personal control was observed. Patients' perceived significant negative consequences, negative emotional response, as well as had poor understanding of their mental illness and treatment effectiveness. Statistically significant gender differences in treatment control and illness coherence subscales of IPQS were observed. Drug attitude inventory was positively correlated with Treatment control subscale (p < .01) and negatively correlated with Illness coherence subscale of IPQS (p < .05). The negative consequences subscale and perceived social support was negatively correlated (p < .01). Patient's perception about their own illness is predictor of their drug taking attitude and perceived social support. Study results should help to develop new interventions to correct inaccurate beliefs in patients with schizophrenia to improve illness outcome.

The shift to early palliative care: a typology of illness journeys and the role of nursing.

PubMed

Wittenberg-Lyles, Elaine; Goldsmith, Joy; Ragan, Sandra

2011-06-01

For the current study, clinical observations of communication between patients, families, and clinicians during chronic, serious, or terminal illness in a cancer care trajectory were examined for patterns and trends. Five communication characteristics were concluded, which informed a typology of illness journeys experienced by patients with cancer and their families. The isolated journey characterizes an illness path in which communication about terminal prognosis and end-of-life care options are not present; communication is restricted by a curative-only approach to diagnosis as well as the structure of medical care. The rescued journey signifies a transition between curative care (hospital narrative) to noncurative care (hospice narrative), challenging patients and their families with an awareness of dying. The rescued journey allows communication about prognosis and care options, establishes productive experiences through open awareness, and affords patients and families opportunities to experience end-of-life care preferences. Finally, palliative care prior to hospice provides patients and families with an illness journey more readily characterized by open awareness and community, which facilitates a comforted journey. Nurses play a pivotal role in communicating about disease progression and plans of care. The typology presented can inform a structured communication curriculum for nurses and assist in the implementation of early palliative care.

Advances in Biomarkers in Critical Ill Polytrauma Patients.

PubMed

Papurica, Marius; Rogobete, Alexandru F; Sandesc, Dorel; Dumache, Raluca; Cradigati, Carmen A; Sarandan, Mirela; Nartita, Radu; Popovici, Sonia E; Bedreag, Ovidiu H

2016-01-01

The complexity of the cases of critically ill polytrauma patients is given by both the primary, as well as the secondary, post-traumatic injuries. The severe injuries of organ systems, the major biochemical and physiological disequilibrium, and the molecular chaos lead to a high rate of morbidity and mortality in this type of patient. The 'gold goal' in the intensive therapy of such patients resides in the continuous evaluation and monitoring of their clinical status. Moreover, optimizing the therapy based on the expression of certain biomarkers with high specificity and sensitivity is extremely important because of the clinical course of the critically ill polytrauma patient. In this paper we wish to summarize the recent studies of biomarkers useful for the intensive care unit (ICU) physician. For this study the available literature on specific databases such as PubMed and Scopus was thoroughly analyzed. Each article was carefully reviewed and useful information for this study extracted. The keywords used to select the relevant articles were "sepsis biomarker", "traumatic brain injury biomarker" "spinal cord injury biomarker", "inflammation biomarker", "microRNAs biomarker", "trauma biomarker", and "critically ill patients". For this study to be carried out 556 original type articles were analyzed, as well as case reports and reviews. For this review, 89 articles with relevant topics for the present paper were selected. The critically ill polytrauma patient, because of the clinical complexity the case presents with, needs a series of evaluations and specific monitoring. Recent studies show a series of either tissue-specific or circulating biomarkers that are useful in the clinical status evaluation of these patients. The biomarkers existing today, with regard to the critically ill polytrauma patient, can bring a significant contribution to increasing the survival rate, by adapting the therapy according to their expressions. Nevertheless, the necessity remains to

Supporting patients with mental illness: Deconstructing barriers to community pharmacist access.

PubMed

Calogero, Samantha; Caley, Charles F

To discuss the barriers faced by individuals with mental health conditions attempting to access their community pharmacists and to propose solutions toward deconstructing those barriers. Given the prevalence of mental illness and the frequency at which psychotropic medications are dispensed, community pharmacists have a daily opportunity to engage patients with mental illness and be active participants in community-based mental health care. Yet multiple barriers affect patient access to community pharmacists. Some barriers, such as heavy dispensing workload, can be considered as "external" to the pharmacist. Other barriers, such as negative attitudes about mental illness, are considered to be "internal." Research about mental illness stigma in pharmacy often reports that community pharmacists are uncomfortable with, or have little time for, mental health patients. Patients also report experiencing stigma from pharmacists and pharmacy staff. Expanded efforts are needed by the pharmacy profession to deconstruct barriers that patients with mental illness are faced with in community pharmacy, especially related to stigma. Specifically, these efforts should include critically evaluating and addressing the quality of didactic and experiential opportunities in psychiatric pharmacotherapy for pharmacy students, transforming the physical layout of community pharmacies to offer true counseling privacy, educating community pharmacists and pharmacy staff about mental illness, and educating patients about what to expect from community pharmacists. There are opportunities for community pharmacy to improve its impact on mental health treatment outcomes by resolving mental illness stigma and other barriers that prevent patients with mental illness from accessing their community pharmacist. Copyright © 2017 American Pharmacists Association®. Published by Elsevier Inc. All rights reserved.

Relation between response to illness and compliance in haemodialysis patients.

PubMed

Saounatsou, M

1999-01-01

The treatment schedule of the haemodialysis patient has many restrictions and the long-term haemodialysis patient's response to illness is characterised by various emotional reactions. Compliance with their medical regimens remains a significant problem which influences the progress of health and by extension quality of life. The preconceived idea that a patient's response to illness may influence his adherence to medical regimen led to this study. The main variables examined were the relationship between the patient's response to illness and compliance and the relationship between compliance and age, education and the length of time on haemodialysis.

Illness perception in patients with androgenetic alopecia and alopecia areata in China.

PubMed

Yu, Nan-Lan; Tan, Huan; Song, Zhi-Qiang; Yang, Xi-Chuan

2016-07-01

The aim of the present study was to provide more information on the role of illness perception in patients with androgenetic alopecia (AGA) and those with alopecia areata (AA), and to further investigate the relationship of illness perception with psychological disorders and dermatological QoL. The study included 342 patients who were diagnosed with AGA (n=212) or AA (n=130) for the first time at our institution between October 2013 and December 2014. All patients were surveyed before clinical examination by several questionnaires including the Brief Illness Perception, Self-rating Depression Scale, Self-rating Anxiety Scale, and Dermatology Life Quality Index (DLQI). In the AGA patients, the illness perception and QoL were low, whereas the prevalence of clinical depression and anxiety was higher compared to the AA patients. Illness perception was associated with psychological distress and low QoL in both groups, and some illness perception dimensions were found to be significant predictors of the DLQI scores. Illness perception plays an important role in AGA and AA patients, and is associated with psychological distress and low QoL. The identification of critical components of illness perception in alopecia patients could help to understand alopecia specificities, to design consultations and interventions according to the perception, and to improve physical and mental outcomes as well as QoL in alopecia patients. Copyright © 2016 Elsevier Inc. All rights reserved.

Illness perception of dropout patients followed up at bipolar outpatient clinic, Turkey.

PubMed

Oflaz, Serap; Guveli, Hulya; Kalelioglu, Tevfik; Akyazı, Senem; Yıldızhan, Eren; Kılıc, Kasım Candas; Basyigit, Sehnaz; Ozdemiroglu, Filiz; Akyuz, Fatma; Gokce, Esra; Bag, Sevda; Kurt, Erhan; Oral, Esat Timucin

2015-06-01

Dropout is a common problem in the treatment of psychiatric illnesses including bipolar disorders (BD). The aim of the present study is to investigate illness perceptions of dropout patients with BD. A cross sectional study was done on the participants who attended the Mood Disorder Outpatient Clinic at least 3 times from January 2003 through June 2008, and then failed to attend clinic till to the last one year, 2009, determined as dropout. Thirty-nine dropout patients and 39 attendent patients with BD were recruited for this study. A sociodemographic form and brief illness perception questionnaire were used to capture data. The main reasons of patients with BD for dropout were difficulties of transport (31%), to visit another doctor (26%), giving up drugs (13%) and low education level (59%) is significant for dropout patients. The dropout patients reported that their illness did not critically influence their lives, their treatment had failed to control their illnesses, they had no symptoms, and that their illness did not emotionally affect them. In conclusion, the nonattendance of patients with serious mental illness can result in non-compliance of therapeutic drug regimens, and a recurrence of the appearance symptoms. The perception of illness in dropout patients with BD may be important for understanding and preventing nonattendance. Copyright © 2015 Elsevier B.V. All rights reserved.

Terminal patients in Belgian nursing homes: a cost analysis.

PubMed

Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Vanden Berghe, Paul; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan

2013-06-01

Policy makers and health care payers are concerned about the costs of treating terminal patients. This study was done to measure the costs of treating terminal patients during the final month of life in a sample of Belgian nursing homes from the health care payer perspective. Also, this study compares the costs of palliative care with those of usual care. This multicenter, retrospective cohort study enrolled terminal patients from a representative sample of nursing homes. Health care costs included fixed nursing home costs, medical fees, pharmacy charges, other charges, and eventual hospitalization costs. Data sources consisted of accountancy and invoice data. The analysis calculated costs per patient during the final month of life at 2007/2008 prices. Nineteen nursing homes participated in the study, generating a total of 181 patients. Total mean nursing home costs amounted to 3,243 € per patient during the final month of life. Total mean nursing home costs per patient of 3,822 € for patients receiving usual care were higher than costs of 2,456 € for patients receiving palliative care (p = 0.068). Higher costs of usual care were driven by higher hospitalization costs (p < 0.001). This study suggests that palliative care models in nursing homes need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients.

Wait times in the emergency department for patients with mental illness

PubMed Central

Atzema, Clare L.; Schull, Michael J.; Kurdyak, Paul; Menezes, Natasja M.; Wilton, Andrew S.; Vermuelen, Marian J.; Austin, Peter C.

2012-01-01

Background: It has been suggested that patients with mental illness wait longer for care than other patients in the emergency department. We determined wait times for patients with and without mental health diagnoses during crowded and noncrowded periods in the emergency department. Methods: We conducted a population-based retrospective cohort analysis of adults seen in 155 emergency departments in Ontario between April 2007 and March 2009. We compared wait times and triage scores for patients with mental illness to those for all other patients who presented to the emergency department during the study period. Results: The patients with mental illness (n = 51 381) received higher priority triage scores than other patients, regardless of crowding. The time to assessment by a physician was longer overall for patients with mental illness than for other patients (median 82, interquartile range [IQR] 41–147 min v. median 75 [IQR 36–140] min; p < 0.001). The median time from the decision to admit the patient to hospital to ward transfer was markedly shorter for patients with mental illness than for other patients (median 74 [IQR 15–215] min v. median 152 [IQR 45–605] min; p < 0.001). After adjustment for other variables, patients with mental illness waited 10 minutes longer to see a physician compared with other patients during noncrowded periods (95% confidence interval [CI] 8 to 11), but they waited significantly less time than other patients as crowding increased (mild crowding: −14 [95% CI −12 to −15] min; moderate crowding: −38 [95% CI −35 to −42] min; severe crowding: −48 [95% CI −39 to −56] min; p < 0.001). Interpretation: Patients with mental illness were triaged appropriately in Ontario’s emergency departments. These patients waited less time than other patients to see a physician under crowded conditions and only slightly longer under noncrowded conditions. PMID:23148052

Predicting depression from illness severity in cardiovascular disease patients: self-efficacy beliefs, illness perception, and perceived social support as mediators.

PubMed

Greco, A; Steca, P; Pozzi, R; Monzani, D; D'Addario, M; Villani, A; Rella, V; Giglio, A; Malfatto, G; Parati, G

2014-04-01

Many studies have investigated the relationships between cardiovascular diseases and patients' depression; nevertheless, few is still known as regard the impact of illness severity on depression and whether psychosocial variables mediate this association. The aim of this study is to investigate the putative mediating role of illness representations, self-efficacy beliefs, and perceived social support on the relationship between illness severity and depression. A total of 75 consecutive patients with cardiovascular disease (80 % men; mean age = 65.44, SD = 10.20) were enrolled in an Italian hospital. Illness severity was measured in terms of left ventricular ejection fraction, whereas psychological factors were assessed using self-report questionnaires. The relationship between left ventricular ejection fraction and depression was mediated by identity illness perception, self-efficacy beliefs in managing cardiac risk factors, and perceived social support. The treatment of depression in cardiovascular disease patients may therefore benefit from a psychological intervention focused on patients' illness representations, self-efficacy beliefs, and their perceived social support.

Psychotherapy Termination Practices with Older Adults: Impact of Patient and Therapist Characteristics.

PubMed

Sullivan, Daniel J; Zeff, Patricia; Zweig, Richard A

2018-02-06

The aims of this study were to survey clinicians' opinions regarding psychotherapy practices in mutual termination with a specified population (depressed older adult outpatients) and to examine the patient and therapist characteristics that may influence such practices. We surveyed psychologists' (N = 96) psychotherapy termination practices, using a hypothetical depressed older adult as a referent, to assess consensus on the appropriateness of various guidelines to termination and to examine whether these differ as a function of patient and therapist characteristics. Several practices were generally agreed to be "extremely appropriate" when terminating psychotherapy with older adults, including collaborating to determine the end date of treatment and discussing patient growth. Data also indicate that patient factors, such as personality pathology, and therapist factors, such as having an Integrative theoretical orientation were associated with differential endorsement of termination practices. Identification as a geropsychologist or working regularly with older adults were associated with a more cautious approach to termination. There is substantial consensus regarding many approaches to termination, but modifications might be appropriate depending on patient characteristics. Clinicians agree on a set of fundamental termination practices when working with older adults, but modify these based on orientation and diagnosis.

Extreme Obesity and Outcomes in Critically Ill Patients

PubMed Central

Martino, Jenny L.; Wang, Miao; Day, Andrew G.; Cahill, Naomi E.; Dixon, Anne E.; Suratt, Benjamin T.; Heyland, Daren K.

2011-01-01

Background: Recent literature suggests that obese critically ill patients do not have worse outcomes than patients who are normal weight. However, outcomes in extreme obesity (BMI ≥ 40 kg/m2) are unclear. We sought to determine the association between extreme obesity and ICU outcomes. Methods: We analyzed data from a multicenter international observational study of ICU nutrition practices that occurred in 355 ICUs in 33 countries from 2007 to 2009. Included patients were mechanically ventilated adults ≥ 18 years old who remained in the ICU for > 72 h. Using generalized estimating equations and Cox proportional hazard modeling with clustering by ICU and adjusting for potential confounders, we compared extremely obese to normal-weight patients in terms of duration of mechanical ventilation (DMV), ICU length of stay (LOS), hospital LOS, and 60-day mortality. Results: Of the 8,813 patients included in this analysis, 3,490 were normal weight (BMI 18.5-24.9 kg/m2), 348 had BMI 40 to 49.9 kg/m2, 118 had BMI 50 to 59.9 kg/m2, and 58 had BMI ≥ 60 kg/m2. Unadjusted analyses suggested that extremely obese critically ill patients have improved mortality (OR for death, 0.77; 95% CI, 0.62-0.94), but this association was not significant after adjustment for confounders. However, an adjusted analysis of survivors found that extremely obese patients have a longer DMV and ICU LOS, with the most obese patients (BMI ≥ 60 kg/m2) also having longer hospital LOS. Conclusions: During critical illness, extreme obesity is not associated with a worse survival advantage compared with normal weight. However, among survivors, BMI ≥ 40 kg/m2 is associated with longer time on mechanical ventilation and in the ICU. These results may have prognostic implications for extremely obese critically ill patients. PMID:21816911

Preload assessment and optimization in critically ill patients.

PubMed

Voga, Gorazd

2010-01-01

Preload assessment and optimization is the basic hemodynamic intervention in critically ill. Beside clinical assessment, non-invasive or invasive assessment by measurement of various pressure or volume hemodynamic variables, are helpful for estimation of preload and fluid responsiveness. The use of dynamic variables is useful in particular subgroup of critically ill patients. In patients with inadequate preload, fluid responsiveness and inadequate flow, treatment with crystalloids or colloids is mandatory. When rapid hemodynamic response is necessary colloids are preferred.

Proximal gastric motility in critically ill patients with type 2 diabetes mellitus.

PubMed

Nguyen, Nam Q; Fraser, Robert J; Bryant, Laura K; Chapman, Marianne; Holloway, Richard H

2007-01-14

To investigate the proximal gastric motor response to duodenal nutrients in critically ill patients with long-standing type 2 diabetes mellitus. Proximal gastric motility was assessed (using a barostat) in 10 critically ill patients with type 2 diabetes mellitus (59 +/- 3 years) during two 60-min duodenal infusions of Ensure (1 and 2 kcal/min), in random order, separated by 2 h fasting. Data were compared with 15 non-diabetic critically ill patients (48 +/- 5 years) and 10 healthy volunteers (28 +/- 3 years). Baseline proximal gastric volumes were similar between the three groups. In diabetic patients, proximal gastric relaxation during 1 kcal/min nutrient infusion was similar to non-diabetic patients and healthy controls. In contrast, relaxation during 2 kcal/min infusion was initially reduced in diabetic patients (P < 0.05) but increased to a level similar to healthy humans, unlike non-diabetic patients where relaxation was impaired throughout the infusion. Duodenal nutrient stimulation reduced the fundic wave frequency in a dose-dependent fashion in both the critically ill diabetic patients and healthy subjects, but not in critically ill patients without diabetes. Fundic wave frequency in diabetic patients and healthy subjects was greater than in non-diabetic patients. In patients with diabetes mellitus, proximal gastric motility is less disturbed than non-diabetic patients during critical illness, suggesting that these patients may not be at greater risk of delayed gastric emptying.

Belief in supernatural causes of mental illness among Malay patients: impact on treatment.

PubMed

Razali, S M; Khan, U A; Hasanah, C I

1996-10-01

The concept of aetiology of mental illness in 134 Malay patients was investigated by means of a 20-item checklist. About 53% of the patients attributed their illnesses to supernatural agents. Witchcraft and possession by evil spirits were regarded as common causes of illness. The number of patients who believed in supernatural causes of their mental illness was significantly higher among those who had consulted bomohs (Malay traditional healers) than among those who had not consulted them. The belief that mental illness is caused by supernatural agents is firmly held by bomohs, who reinforce this notion in those who seek their advice. Belief in supernatural causes of mental illness was not significantly associated with age, gender, level of education or occupation of the patients. Patients who believed in supernatural causes of mental illness were also found to show poor drug compliance, and the number of such patients at 6 months follow-up was significantly lower than the corresponding figure for those who did not believe in supernatural causes. The importance of understanding the patients' cultural background when treating psychiatric patients is highlighted.

On a personal note: a music therapist's reflections on working with those who are living with a terminal illness.

PubMed

Hartley, N A

2001-01-01

Music therapists are constantly called upon to justify their work through research projects and evaluation processes. Rarely do we get the opportunity to talk personally about our work, the effects it has on us as music therapists, indeed, as human beings. This paper traces my own journey as a music therapist working with the terminally ill. Using audio extracts of music improvised with patients at the end of their lives, the concept of "attention" in music is addressed and explored. The paper will investigate: a) What is the difference between the quality of attention that is available to ourselves and our patients "in" music, as opposed to other ways of being together?; b) What does musical experience, particularly when achieved through improvisation, enable us and our patients to be that we cannot achieve in other ways?; c) Can "being in music" with another person fulfill a sense of longing that is evident in people at the end of their lives? In her book Waiting For God, Simone Weil suggests, "Those who are unhappy have no need for anything else in this world other than people capable of giving them their attention..." (1). Can the improvisation of music offer a unique and uncomplicated medium for being close?

The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

PubMed

Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

2016-07-01

The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

[Home parenteral nutrition for terminal stage of cancer patient].

PubMed

Takamura, S; Sakuyama, T; Nakamura, Y; Takahashi, N; Hattori, M

1997-12-01

In the last 6 years, we have experienced 20 cancer patients who received home parenteral nutrition for terminal stage. The patients had 13 gastric cancers, 3 esophageal cancers and 5 others. The prognosis of upper G-I cancer is known to be poorer than that of colon cancer. The home care of our cases, the gastric cancer lasted 25 days on average, which was shorter than others. So the home care for patients in the terminal stage of gastric cancer is very short. Therefore we decide the home care for the terminal stage of gastric cancer as soon as possible. We conducted a questionnaire survey of our cases and family. We finally found that the most important thing is the safety of patient for the maintenance of home care. Our home care system is made up of a 3-way relationship among the patient, support system and doctor. The doctor is on call for the problems of the patient for 24 hours. Therefore, we believe that this system is comfortable for both the patient and family.

Rectal administration of metronidazole in severely ill patients.

PubMed Central

Barker, E M; Aitchison, J M; Cridland, J S; Baker, L W

1983-01-01

Ten severely ill patients with life threatening sepsis received metronidazole as suppositories and blood concentrations of the drug were measured twice daily over five days. Therapeutic blood concentrations of metronidazole were maintained at all times in all patients. Rectal administration of metronidazole is accepted as effective prophylaxis against infection associated with surgery and as treatment of established infection. This study shows that in gravely ill patients metronidazole administered as suppositories gives perfectly adequate therapeutic serum concentrations of the drug, but that to achieve these concentrations rapidly the first suppository should be given with an intravenous loading dose. PMID:6409287

Illness denial questionnaire for patients and caregivers.

PubMed

Rossi Ferrario, Silvia; Giorgi, Ines; Baiardi, Paola; Giuntoli, Laura; Balestroni, Gianluigi; Cerutti, Paola; Manera, Marina; Gabanelli, Paola; Solara, Valentina; Fornara, Roberta; Luisetti, Michela; Omarini, Pierangela; Omarini, Giovanna; Vidotto, Giulio

2017-01-01

Interest in assessing denial is still present, despite the criticisms concerning its definition and measurement. We tried to develop a questionnaire (Illness Denial Questionnaire, IDQ) assessing patients' and caregivers' denial in relation to their illness/disturbance. After a preliminary study, a final version of 24 dichotomous items (true/false) was selected. We hypothesized a theoretical model with three dimensions: denial of negative emotions, resistance to change, and conscious avoidance, the first two composing the actual Denial and the last representing an independent component of the illness denial behavior. The IDQ was administered to 400 subjects (219 patients and 181 caregivers) together with the Anxiety-Depression Questionnaire - Reduced form (AD-R), in order to assess concurrent validity. Confirmatory factor analysis (CFA), internal consistency indices (Cronbach's α and McDonald's ω), and test-retest analysis were performed. CFA and internal consistency indices (Cronbach's α: 0.87-0.96) indicated a clear and meaningful three-factor structure of IDQ, for both patients and caregivers. Further analyses showed good concurrent validity, with Denial and its subscale negatively associated with anxiety and depression and avoidance positively associated with anxiety and depression. The IDQ also showed a good stability ( r from 0.71 to 0.87). The IDQ demonstrated good psychometric properties. Denial of negative emotions and resistance to change seem to contribute to a real expression of denial, and conscious avoidance seems to constitute a further step in the process of cognitive-affective elaboration of the illness.

Dancing around death: hospitalist-patient communication about serious illness.

PubMed

Anderson, Wendy G; Kools, Susan; Lyndon, Audrey

2013-01-01

Hospital physicians care for most seriously ill patients in the United States. We employed dimensional analysis to describe communication about death and dying in audio-recorded admission encounters between seriously ill patients and hospitalists. Acknowledging or not acknowledging the possibility of dying emerged as a key process. Acknowledgment was rare, and depended on synergistic communication behaviors between patient and physician. Facilitators included patients cuing for information and disclosing emotional distress, and physicians exploring the patient's understanding of his or her illness and emotional distress. When hospitalists focused on acute issues, stated that they were awaiting test results, and deferred to other physicians, discussion moved away from acknowledgment. Meaningful discussion of end-of-life issues, including goals and values, fears about death and dying, prognosis, and options for palliative care followed open acknowledgment. This acknowledgment process can serve as a guide for providers to sensitively and honestly discuss essential end-of-life issues.

Severe mental illness - patients' children needs.

PubMed

Svab, Vesna

2009-09-01

Care for families and children of people with severe mental illness is a professionally and politically neglected issue. The majority of countries provide only services for several needs of the patients' families, i.e. treatment, custody and counselling. Management of stress and resolving of common problems are rarely addressed. Children of people with mental illness reflect and call professional attention to this issues. The deficiency of services is to be addressed by multidisciplinary team efforts. In the Slovenian organization of health services coordination could be provided by family physicians.

Patient communication self-efficacy, self-reported illness symptoms, physician communication style and mental health and illness in hospital outpatients.

PubMed

Capone, Vincenza

2016-07-01

In this cross-sectional study, we investigated the associations between patient communication self-efficacy and self-reported symptoms in doctor-patient communication, as perceived by patients, and the mental health and illness of hospital outpatients. Using data from a sample of 74 outpatients (mean age = 37.58 years, standard deviation = 12.54), a structural equation model was calculated. The results showed that communication self-efficacy and respectful behaviour were associated with mental health and illness. Furthermore, self-reported symptoms were correlated with mental illness. Gender and educational differences also occurred. The findings suggest that enhancing patients' communication skills could benefit outpatients in general, but female and less educated patients in particular. © The Author(s) 2014.

A prospective observational study of the relationship of critical illness associated hyperglycaemia in medical ICU patients and subsequent development of type 2 diabetes

PubMed Central

2010-01-01

Introduction Critical illness is commonly complicated by hyperglycaemia caused by mediators of stress and inflammation. Severity of disease is the main risk factor for development of hyperglycaemia, but not all severely ill develop hyperglycemia and some do even in mild disease. We hypothesised that acute disease only exposes a latent disturbance of glucose metabolism which puts those patients at higher risk for developing diabetes. Methods Medical patients with no history of impaired glucose metabolism or other endocrine disorder admitted to an intensive care unit between July 1998 and June 2004 were considered for inclusion. Glucose was measured at least two times a day, and patients were divided into the hyperglycaemia group (glucose ≥7.8 mmol/l) and normoglycaemia group. An oral glucose tolerance test was performed within six weeks after discharge to disclose patients with unknown diabetes or pre-diabetes who were excluded. Patients treated with corticosteroids and those terminally ill were also excluded from the follow-up which lasted for a minimum of five years with annual oral glucose tolerance tests. Results A five-year follow-up was completed for 398 patients in the normoglycaemia group, of which 14 (3.5%) developed type 2 diabetes. In the hyperglycaemia group 193 patients finished follow-up and 33 (17.1%) developed type 2 diabetes. The relative risk for type 2 diabetes during five years after the acute illness was 5.6 (95% confidence interval (CI) 3.1 to 10.2). Conclusions Patients with hyperglycaemia during acute illness who are not diagnosed with diabetes before or during the hospitalization should be considered a population at increased risk for developing diabetes. They should, therefore, be followed-up, in order to be timely diagnosed and treated. PMID:20615210

Journey of a Woman With Terminal Cervical Cancer.

PubMed

Kessler, Theresa A

2016-06-01

When a cervical cancer diagnosis is made during a terminal stage, a woman is faced with many challenges. Although a terminal illness has many negative effects, such as physical pain, scarring, fear, and sexual dysfunction, women may experience a positive impact on their life, such as improved well-being and a greater appreciation of daily life. The individual experience can lead to personal revelations. Sometimes, the diagnosis can even be seen as a blessing. Understanding a personal experience in a real-life context of the terminal stages of disease is important. This story shares the day-to-day journey of a woman living with a terminal illness of cervical cancer.

Violent victimization of adult patients with severe mental illness: a systematic review

PubMed Central

Latalova, Klara; Kamaradova, Dana; Prasko, Jan

2014-01-01

The aims of this paper are to review data on the prevalence and correlates of violent victimization of persons with severe mental illness, to critically evaluate the literature, and to explore possible approaches for future research. PubMed/MEDLINE and PsycINFO databases were searched using several terms related to severe mental illness in successive combinations with terms describing victimization. The searches identified 34 studies. Nine epidemiological studies indicate that patients with severe mental illness are more likely to be violently victimized than other community members. Young age, comorbid substance use, and homelessness are risk factors for victimization. Victimized patients are more likely to engage in violent behavior than other members of the community. Violent victimization of persons with severe mental illness has long-term adverse consequences for the course of their illness, and further impairs the quality of lives of patients and their families. Victimization of persons with severe mental illness is a serious medical and social problem. Prevention and management of victimization should become a part of routine clinical care for patients with severe mental illness. PMID:25336958

Violent victimization of adult patients with severe mental illness: a systematic review.

PubMed

Latalova, Klara; Kamaradova, Dana; Prasko, Jan

2014-01-01

The aims of this paper are to review data on the prevalence and correlates of violent victimization of persons with severe mental illness, to critically evaluate the literature, and to explore possible approaches for future research. PubMed/MEDLINE and PsycINFO databases were searched using several terms related to severe mental illness in successive combinations with terms describing victimization. The searches identified 34 studies. Nine epidemiological studies indicate that patients with severe mental illness are more likely to be violently victimized than other community members. Young age, comorbid substance use, and homelessness are risk factors for victimization. Victimized patients are more likely to engage in violent behavior than other members of the community. Violent victimization of persons with severe mental illness has long-term adverse consequences for the course of their illness, and further impairs the quality of lives of patients and their families. Victimization of persons with severe mental illness is a serious medical and social problem. Prevention and management of victimization should become a part of routine clinical care for patients with severe mental illness.

Investigational tests and treatments performed in terminal stage cancer patients in two weeks before death: Turkish oncology group (TOG) study.

PubMed

Türker, İbrahim; Kömürcü, Şeref; Arıcan, Ali; Doruk, Hatice; Özyılkan, Özgür; Coşkun, Hasan Şenol; Colak, Dilşen; Üçgül Çavuşoğlu, Emel; Ata, Alper; Sezer, Ahmet; Yeşil Çınkır, Havva; Şenler, Filiz Cay; Arpacı, Fikret

2014-12-01

Although more palliative care is necessary for terminally ill cancer patients, excess investigational tests, invasive procedures, and treatments are given instead. Between November 2009 and December 2013, six hundred and twenty-four patients with end-stage cancer who were died at inpatient setting evaluated retrospectively. Patients' characteristics, sites of tumor and metastasis, tests and invasive procedures, treatments performed in the last 2 weeks before death were collected from the hospital files and analyzed. Median age of 624 patients was 58 (range 16-96) years. More than half of the patients (370, 59.3%) were men. The most frequent cancer sites were gastrointestinal (GI) system (32.2%), lung (24.0%), and breast (11.1%). Frequent metastatic sites were liver (34.8%), bone (31.5%), lung (23.3%), and/or brain (16.9%). Causes of death were respiratory failure, infections, and/or liver failure in 49.9, 23.9, and 19.4% of patients, respectively. Radiological tests performed in the last 2 weeks before death were ultrasonography, computed tomography, magnetic resonance imaging, bone scan in 25.6, 16.3, 11.4, and 3.8% of patients, respectively. Treatments received were intravenous (i.v) serum infusion, blood transfusion, total parenteral nutrition (TPN), human albumin infusion in 55.9, 44.1, 34.9, and 9.5% of patients, respectively. Invasive procedures such as invasive pain relief, terminal sedation, and chemotherapy performed in 12.6, 4.4, and 10.0% of patients, respectively. Central venous catheter application, paracentesis, thoracentesis, and GI endoscopy were applied in 41.7, 9.8, 5.6, and 3.4% of the patients, respectively. Radiological tests, invasive procedures, TPN, and human albumin transfusion were used excessively in terminal stage cancer patients in our medical oncology inpatient clinics. Invasive pain relief and terminal sedation were still underused in our cancer clinics. There is an urgent need in developing national palliative care program to improve

Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series

PubMed Central

Noje, Corina; Bernier, Meghan L.; Costabile, Philomena M.; Klein, Bruce L.; Kudchadkar, Sapna R.

2016-01-01

Objective To present our single-center’s experience with three palliative critical care transports home from the pediatric intensive care unit (PICU) for terminal extubation. Design, Setting, Patients All cases were identified from our institutional Pediatric Transport database. Patients in the case series were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home between January 1, 2012 and December 31, 2014 for terminal extubation and end-of-life care according to their families’ wishes. Interventions, Measurements, Main Results The rate of palliative care transports home for terminal extubation during the study period was 2.6 per 100 deaths. The patients were 7 months, 6 years, and 18 years old and had complex chronic conditions. The transfer process was protocolized. The families were approached by the PICU staff during multidisciplinary goals-of-care meetings. Parental expectations were clarified and home hospice care was arranged pre-transfer. All transports were performed by our pediatric critical care transport team, and all terminal extubations were performed by physicians. All patients had unstable medical conditions and urgent needs for transport to comply with the families’ wishes for withdrawal of life-support and death at home. As such, all three cases presented similar logistical challenges, including establishing do-not-resuscitate status pre-transport, having limited time to organize the transport, and coordinating home palliative care services with available community resources. Conclusions Though a relatively infrequent practice in pediatric critical care, transport home for terminal extubation represents a feasible alternative for families seeking out-of-hospital end-of-life care for their critically ill technology-dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports to include patient screening

Comparison of piperacillin exposure in the lungs of critically ill patients and healthy volunteers.

PubMed

Felton, T W; Ogungbenro, K; Boselli, E; Hope, W W; Rodvold, K A

2018-01-29

Severe infections of the respiratory tracts of critically ill patients are common and associated with excess morbidity and mortality. Piperacillin is commonly used to treat pulmonary infections in critically ill patients. Adequate antibiotic concentration in the epithelial lining fluid (ELF) of the lung is essential for successful treatment of pulmonary infection. To compare piperacillin pharmacokinetics/pharmacodynamics in the serum and ELF of healthy volunteers and critically ill patients. Piperacillin concentrations in the serum and ELF of healthy volunteers and critically ill patients were compared using population methodologies. Median piperacillin exposure was significantly higher in the serum and the ELF of critically ill patients compared with healthy volunteers. The IQR for serum piperacillin exposure in critically ill patients was six times greater than for healthy volunteers. The IQR for piperacillin exposure in the ELF of critically ill patients was four times greater than for healthy volunteers. The median pulmonary piperacillin penetration ratio was 0.31 in healthy volunteers and 0.54 in critically ill patients. Greater variability in serum and ELF piperacillin concentrations is observed in critically ill patients compared with healthy adult subjects and must be considered in the development of dosage regimens. Pulmonary penetration of antimicrobial agents should be studied in critically ill patients, as well as healthy volunteers, during drug development to ensure appropriate dosing of patients with pneumonia. © The Author(s) 2018. Published by Oxford University Press on behalf of the British Society for Antimicrobial Chemotherapy. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Body Consciousness, Illness-Related Impairment, and Patient Adherence in Hemodialysis.

ERIC Educational Resources Information Center

Christensen, Alan J.; And Others

1996-01-01

Examined the joint effects of private body consciousness (PBC) and degree of illness-related physical impairment on treatment regimen adherence in a sample of 52 hemodialysis patients. Predicted the effect of PBC on adherence would vary as a function of patients' level of illness-related physical impairment. Results are discussed in terms of…

[Acceptance of patients with mental illness: a family perspective].

PubMed

Vicente, Jéssica Batistela; Mariano, Pamela Patrícia; Buriola, Aline Aparecida; Paiano, Marcelle; Waidman, Maria Angélica Pagliarini; Marcon, Sonia Silva

2013-06-01

The aim of this descriptive and qualitative study is to analyse how acceptance of mental illness is perceived by family members of the patient and the surrounding community. This study was conducted with the help of 10 families of patients with mental disorders admitted to the psychiatric emergency unit of the Municipal Hospital of Maringá, state of Parana, Brazil. Data were collected from October to December 2010, in open interviews and submitted to thematic content analysis, resulting in three categories: "Care, a constant requirement", "Living with a patient with mental illness: a whirlwind of emotions", "A wall constructed with stigma and prejudgement: the need for deconstruction". The conclusion is that an understanding of the disease is vital for acceptance of the illness itself and of the patient, and that healthcare professionals must remain close to the family to provide support, answer queries related to the disease, and help the family to face the difficulties of everyday life.

Dancing Around Death: Hospitalist-Patient Communication About Serious Illness

PubMed Central

Anderson, Wendy G.; Kools, Susan; Lyndon, Audrey

2012-01-01

Hospital physicians care for most seriously ill patients in the United States. We employed dimensional analysis to describe communication about death and dying in audio-recorded admission encounters between seriously ill patients and hospitalists. Acknowledging or not acknowledging the possibility of dying emerged as a key process. Acknowledgment was rare, and depended on synergistic communication behaviors between patient and physician. Facilitators included patients cuing for information and disclosing emotional distress, and physicians exploring the patient’s understanding of his or her illness and emotional distress. When hospitalists focused on acute issues, stated that they were awaiting test results, and deferred to other physicians, discussion moved away from acknowledgment. Meaningful discussion of end-of-life issues, including goals and values, fears about death and dying, prognosis, and options for palliative care followed open acknowledgment. This acknowledgment process can serve as a guide for providers to sensitively and honestly discuss essential end-of-life issues. PMID:23034778

Comorbidity profile and healthcare utilization in elderly patients with serious mental illnesses.

PubMed

Hendrie, Hugh C; Lindgren, Donald; Hay, Donald P; Lane, Kathleen A; Gao, Sujuan; Purnell, Christianna; Munger, Stephanie; Smith, Faye; Dickens, Jeanne; Boustani, Malaz A; Callahan, Christopher M

2013-12-01

Patients with serious mental illness are living longer. Yet, there remain few studies that focus on healthcare utilization and its relationship with comorbidities in these elderly mentally ill patients. Comparative study. Information on demographics, comorbidities, and healthcare utilization was taken from an electronic medical record system. Wishard Health Services senior care and community mental health clinics. Patients age 65 years and older-255 patients with serious mental illness (schizophrenia, major recurrent depression, and bipolar illness) attending a mental health clinic and a representative sample of 533 nondemented patients without serious mental illness attending primary care clinics. Patients having serious mental illness had significantly higher rates of medical emergency department visits (p = 0.0027) and significantly longer lengths of medical hospitalizations (p <0.0001) than did the primary care control group. The frequency of medical comorbidities such as diabetes, coronary artery disease, congestive heart failure, chronic obstructive pulmonary disease, thyroid disease, and cancer was not significantly different between the groups. Hypertension was lower in the mentally ill group (p <0.0001). Reported falls (p <0.0001), diagnoses of substance abuse (p = 0.02), and alcoholism (p = 0.0016) were higher in the seriously mentally ill. The differences in healthcare utilization between the groups remained significant after adjusting for comorbidity levels, lifestyle factors, and attending primary care. Our findings of higher rates of emergency care, longer hospitalizations, and increased frequency of falls, substance abuse, and alcoholism suggest that seriously mentally ill older adults remain a vulnerable population requiring an integrated model of healthcare. Copyright © 2013 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

Older Patients' Perspectives on Quality of Serious Illness Care in Primary Care.

PubMed

Abu Al Hamayel, Nebras; Isenberg, Sarina R; Hannum, Susan M; Sixon, Joshua; Smith, Katherine Clegg; Dy, Sydney M

2018-01-01

Despite increased focus on measuring and improving quality of serious illness care, there has been little emphasis on the primary care context or incorporation of the patient perspective. To explore older patients' perspectives on the quality of serious illness care in primary care. Qualitative interview study. Twenty patients aged 60 or older who were at risk for or living with serious illness and who had participated in the clinic's quality improvement initiative. We used a semistructured, open-ended guide focusing on how older patients perceived quality of serious illness care, particularly in primary care. We transcribed interviews verbatim and inductively identified codes. We identified emergent themes using a thematic and constant comparative method. We identified 5 key themes: (1) the importance of patient-centered communication, (2) coordination of care, (3) the shared decision-making process, (4) clinician competence, and (5) access to care. Communication was an overarching theme that facilitated coordination of care between patients and their clinicians, empowered patients for shared decision-making, related to clinicians' perceived competence, and enabled access to primary and specialty care. Although access to care is not traditionally considered an aspect of quality, patients considered this integral to the quality of care they received. Patients perceived serious illness care as a key aspect of quality in primary care. Efforts to improve quality measurement and implementation of quality improvement initiatives in serious illness care should consider these aspects of care that patients deem important, particularly communication as an overarching priority.

Systematic review of β blocker, aspirin, and statin in critically ill patients: importance of severity of illness and cardiac troponin.

PubMed

Rothenberg, Florence G; Clay, Michael B; Jamali, Hina; Vandivier-Pletsch, Robin H

2017-04-01

Non-cardiac critically ill patients with type II myocardial infarction (MI) have a high risk of mortality. There are no evidence-based interventions to mitigate this risk. We systematically reviewed the literature regarding the use of medications known to reduce mortality in patients with cardiac troponin (cTn) elevation due to type I MI (β blockers, statin, and aspirin) in studies of critically ill patients without Type I MI. All PubMed publications between 1976-2/19/16 were reviewed. Search terms included: β blocker or aspirin or statin and intensive care unit (ICU) or critically ill or sepsis; 497 primary references were obtained. Inclusion criteria were as follows: (1) study population consisted of critically ill patients in the ICU with non-cardiovascular illnesses, (2) mortality end point, (3) severity of illness (or injury) was measured, and (4) the antiplatelet agent was primarily aspirin. Retrospective investigations, prospective observational studies, meta-analysis, systematic review, and randomized controlled trials were included; case reports were excluded. 25 primary references were obtained. The data were extracted and tabulated using data collection headings as follows: article title, first author/year/reference number, study type/design, population studied, outcome and intervention, and study question addressed. Evidence was not graded as the majority of studies were non-randomized (low-to-moderate quality). 11 studies were found through bibliography reviews for a total of 36 references. In conclusion, β blockers, statins, and aspirin may play a role in reducing mortality in non-cardiac critically ill patients. Benefit appears to be related to severity of illness, for which cTn may be a marker. Copyright © 2017 American Federation for Medical Research.

[Quality of diagnosis information given to terminal cancer patients].

PubMed

Font-Ritort, Sergi; Martos-Gutiérrez, José Antonio; Montoro-Lorite, Mercedes; Mundet-Pons, Lluís

To determine the information that terminal cancer patients have about their diagnosis, identifying key words used, and quantifying the conspiracy of silence. A cross-sectional, analytical study was conducted by reviewing the hospice support team data base which contains the medical history and a semi-structured interview with terminal cancer patients in the first visit to the hospice. Demographic and socioeconomic data was collected, as well as relevant clinical information (diagnosis, prevalent symptoms, number of symptoms, patient functionality, QoL, information given, and words used). Out of total of sample of 723 records, 77.87% (95% CI: 74.70-80.74) of the patients were properly informed about their diagnosis. The most used words were cancer in 26% of the patients, tumour in 51.59%, and for the remaining 10.65%, the word inflammation was used. Statistically significant differences of information were found between sexes, age, types of cancer, and hospital ward. Terminal cancer patients have knowledge on their diagnosis, suggesting that the conspiracy of silence is present to a lesser extent. This knowledge is transmitted using different words and with euphemisms. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Factors influencing intensive care unit survival for critically ill elderly patients.

PubMed

Kleinpell, R M; Ferrans, C E

1998-01-01

To examine factors influencing intensive care unit (ICU) survival for critically ill elderly patients and to compare survivors and nonsurvivors of ICU on demographic and illness-related variables. Retrospective, ex post facto research design. Adult medical and surgical ICUs. The records of 164 survivors and 111 nonsurvivors from 2 medical-surgical ICUs were examined. Patients were placed into 3 age groups (middle-aged, young-old, and old-old) to compare outcomes for elderly ICU patients. ICU survival, ICU treatments received, severity of illness. The Acute Physiology Age and Chronic Health Evaluation II (APACHE II) was used to assess illness severity. Additional illness-related information was collected by chart review. Predictors of ICU nonsurvival were severity of illness (measured by APACHE II scores) and intubation. Comparison of survivors and nonsurvivors revealed no statistically significant differences in sex or age. For all age groups, nonsurvivors had significantly higher mean days of ICU hospitalization (F (1,239) = 7.20 P < .0078) and higher APACHE II scores (F (1,239) = 106.5 P < .0001). Analysis of ICU treatments received by the 3 age groups of survivors revealed a significant difference only on oxygen therapy, (chi-square = 10.2, df = 2, P = .006), with more young-old (aged 65 to 79) and old-old (aged 80 and older) ICU patients receiving oxygen therapy than middle-aged patients (aged 45 to 64). The findings of this study demonstrated that severity of illness was a predictor of ICU outcome; age was not. Additionally, age was not related to ICU treatments received.

The attitudes of general hospital doctors toward patients with comorbid mental illness.

PubMed

Noblett, Joanne E; Lawrence, Robert; Smith, Jared G

2015-01-01

What are the attitudes of general hospital doctors toward patients with comorbid mental illness? Do certain characteristics of the health professional related to attitude valence to patients with comorbid mental illness? An anonymous questionnaire was sent out to a cohort of doctors working in three General Hospitals in South West London. The questionnaire included vignettes to assess the respondents' attitudes toward eight patients presenting with a physical compliant with different clinical histories, including depression, schizophrenia, personality disorder, diabetes, and criminal behavior. A total of 52 participants completed the questionnaire; 40 females and 12 males. Across all domains, the most positive attitudes were held toward patients without a diagnosis of mental illness. The least positive attitudes were toward patients with schizophrenia, personality disorder, and those classified as "criminals," and negative attitudes relating to the unpredictability of patients was identified in these categories. There was no statistically significant difference in attitudes depending on age or level of training. However, female participants tended to endorse more positive attitudinal responses, most clearly toward patients with depression and heroin addiction. Negative attitudes of doctors were identified toward certain mental illness diagnoses and are likely to contribute the physical health disparity between patients with and without a comorbid mental illness. This raises the question as to how these attitudes can be changed in order to improve the parity of physical health care between patient with and without mental illness. © The Author(s) 2015.

Vitamin D Status in Hospitalized Chronically Ill Patients.

PubMed

Botros, Raef Malak; AbdElsalam Besibes, Mona Mohamed; Bahaaeldin, Ahmed Mohamed; Abo Elyazed, Sherihan

2018-04-13

Vitamin D deficiency is rarely considered or treated in critically ill patients. Deficiency of 25-hydroxy vitamin D [25(OH)D] prior to hospital admission might be a significant predictor of short- and long-term all cause patient mortality in a critically ill patient. The aim of this work is to investigate the prevalence of vitamin D deficiency in hospitalized patients and its relation to the length of stay and outcome of hospitalization. Prospective cohort study performed on 80 patients admitted with acute deterioration of their chronic illness. Four groups of diseases were included, namely, chronic liver diseases (CLD), chronic obstructive pulmonary diseases (COPD), cerebrovascular stroke (CVS), and heart failure (HF). The patients were followed up until their discharge, or transfer, or death. Patients were sampled for their vitamin D level on admission and were divided according to their vitamin D status into sufficient, insufficient, and deficient. Statistical methods and analysis of the present study were conducted using the SPSS V17 program. Vitamin D level had a significant inverse correlation with length of hospital stay (r = -0.648) (p < 0.001). In vitamin D-deficient and -insufficient groups, there was a significant difference between survivors and nonsurvivors as regards vitamin D levels and an inverse correlation between vitamin D level and outcome of hospital admission. Vitamin D deficiency and insufficiency are significantly associated with a longer hospital stay and a poor outcome of hospital admission in comparison to control.

Chloride toxicity in critically ill patients: What's the evidence?

PubMed

Soussi, Sabri; Ferry, Axelle; Chaussard, Maité; Legrand, Matthieu

2017-04-01

Crystalloids have become the fluid of choice in critically ill patients and in the operating room both for fluid resuscitation and fluid maintenance. Among crystalloids, NaCl 0.9% has been the most widely used fluid. However, emerging evidence suggests that administration of 0.9% saline could be harmful mainly through high chloride content and that the use of fluid with low chloride content may be preferable in major surgery and intensive care patients. Administration of NaCl 0.9% is the leading cause of metabolic hyperchloraemic acidosis in critically ill patients and side effects might target coagulation, renal function, and ultimately increase mortality. More balanced solutions therefore may be used especially when large amount of fluids are administered in high-risk patients. In this review, we discuss physiological background favouring the use of balanced solutions as well as the most recent clinical data regarding the use of crystalloid solutions in critically ill patients and patients undergoing major surgery. Copyright © 2016 Société française d'anesthésie et de réanimation (Sfar). Published by Elsevier Masson SAS. All rights reserved.

Illness Perceptions are Associated with Quality of Life in Patients with Fibrous Dysplasia.

PubMed

Majoor, B C J; Andela, C D; Quispel, C R; Rotman, M; Dijkstra, P D S; Hamdy, N A T; Kaptein, A A; Appelman-Dijkstra, N M

2018-01-01

Fibrous dysplasia (FD) is a rare bone disorder in which normal bone is replaced by fibrous tissue resulting in pain, deformities, pathological fractures or asymptomatic disease. Illness perceptions are patients' cognitions and emotions about their illness and its treatment, which may impact on Quality of Life (QoL). Here, we explore illness perceptions in patients with FD compared to other disorders, identify factors associated with illness perceptions and evaluate their relationship with QoL. Ninety-seven out of 138 eligible patients from the LUMC FD cohort completed the Illness Perception Questionnaire-Revised (IPQ-R) and the Short Form-36 (SF-36). Age, Gender, Skeletal Burden Score (SBS), FGF-23 levels, type of FD and SF-36 scores were analysed for an association with illness perceptions. We observed significant (p < 0.01) differences in patients' illness perceptions between FD subtypes in the domains: identity, timeline acute/chronic and consequences. Patients with craniofacial FD reported to perceive more consequences (p = 0.022). High SBS was associated with perceiving more negative consequences and attributing the cause of FD to psychological factors (p < 0.01), and high FGF-23 levels with attributing more symptoms to the disease and perceiving more consequences (p < 0.01). The IPQ-R domain identity, timeline acute/chronic, timeline cyclical, consequences, emotional representations and treatment control were significantly associated with impairments in QoL. Illness perceptions in patients with FD relate to QoL, differ from those in patients with other disorders, and are associated with disease severity. Identifying and addressing maladaptive illness perceptions may improve quality of life in patients with FD.

Adaptation to illness in relation to pain perceived by patients after surgery.

PubMed

Chabowski, Mariusz; Junke, Michał; Juzwiszyn, Jan; Milan, Magdalena; Malinowski, Maciej; Janczak, Dariusz

2017-01-01

Pain is one of the factors that decrease quality of life. Undergoing surgery is inevitably associated with the sensation of pain, which can affect a patient's level of acceptance of an illness. The aim of the study was to evaluate the level of acceptance of illness in patients undergoing surgical treatment with relation to the pain perceived by them during surgical treatment and to determine other factors that affect adaptation to illness among patients subjected to invasive treatment. The study was conducted on a group of 100 patients with mean age of 51.27 (SD=18.98) hospitalized in surgery departments in the Provincial Specialist Hospital in Wrocław, Poland, in April 2016. The Acceptance of Illness Scale (AIS) and the Visual Analog Scale (VAS) for pain were used. The mean score of VAS was 3.86 (SD =2.02). The mean score of AIS was 24.42 (SD =7.35). The level of acceptance of illness was significantly negatively correlated with the intensity of pain ( p <0.001; r =-0.498), the number of coexisting diseases ( p =0.002; r =-0.31), age ( p <0.001; r =-0.391), and the period of time since the operation ( p =0.007; r =-0.266). Patients taking analgesics showed a significantly lower acceptance of illness than those who did not ( p =0.009). A patient's place of living, education, and sex had no significant impact on their acceptance of illness. A higher level of pain translates into a lower adaptation to illness despite the use of analgesics, which may indicate that inadequate pain control leads to a decrease in the acceptance of illness. Further research on monitoring postoperative pain, as well as the development of postoperative prevention programs, is required.

Vesical schistosomiasis with terminal hematuria in sub-Saharan patients.

PubMed

Pereira, J; Calleja, E; Marne, C; Borque, A

2014-03-01

To know the characteristics of vesical schistosomiasis caused by schistosoma hematobium in immigrant patients. The retrospective study of 41 cases microbiologically diagnosed in our hospital over the last 16 years is presented. Data was collected on origin, age, presentation form, diagnostic tests and treatment. All were African patients whose ages ranged from 4 to 32 years and who had terminal macroscopic hematuria. Most of the patients (85%) were men. In all of the cases, diagnosis was by a urinary microbiological study and in one case, cystoscopy with a biopsy of a typical vesical lesion. Terminal hematuria is the most representative clinical sign. They were treated with praziquantel. The epidemiology and intermittent terminal hematuria in African patients should lead to the suspicion of vesical schistosomiasis as the first diagnostic option. Urinary microbiological study is a rapid, non-invasive, test with high diagnostic yield that would avoid performing invasive studies. Its simple treatment assures high level of compliance and consequent efficacy. Copyright © 2013 AEU. Published by Elsevier Espana. All rights reserved.

John Paul Jones: An Overlooked Autopsy Finding that May Explain His Terminal Illness.

PubMed

Hamrell, Burt B

2016-03-01

A finding in the autopsy of John Paul Jones, the American Revolutionary War naval hero, may explain his terminal illness. During his last 2 years, he had a persistent productive cough and dyspnea. Ten days before death, he developed rapidly progressive dependent edema and ascites. He died in France in 1792. His body, preserved in alcohol in a lead coffin, was, in 1905, removed to the United States. Glomerulonephritis was noted on an autopsy, performed in France, but there was no comment then or since about ventricular wall thickness being the same in both ventricles at 5-6 mm. Hypertrophy and dilatation with biventricular failure followed by tissue shrinkage during 113 years in alcohol could have resulted in these ventricular wall findings. Systemic hypertension and left ventricular failure are consistent with his respiratory symptoms complicated perhaps by pulmonary emboli, right ventricular failure with tricuspid regurgitation, peripheral congestion, and jaundice. © 2015 American Academy of Forensic Sciences.

Does health status influence acceptance of illness in patients with chronic respiratory diseases?

PubMed

Kurpas, D; Mroczek, B; Brodowski, J; Urban, M; Nitsch-Osuch, A

2015-01-01

The level of illness acceptance correlates positively with compliance to the doctor's recommendations, and negatively with the frequency and intensity of complications of chronic diseases. The purpose of this study was to determine the influence of the clinical condition on the level of illness acceptance, and to find variables which would have the most profound effect on the level of illness acceptance in patients with chronic respiratory diseases. The study group consisted of 594 adult patients (mean age: 60 ± 15 years) with mixed chronic respiratory diseases, recruited from patients of 136 general practitioners. The average score in the Acceptance of Illness Scale was 26.2 ± 7.6. The low level of illness acceptance was noted in 174 (62.6 %) and high in 46 (16.6 %) patients. Analysis of multiple regressions was used to examine the influence of explanatory variables on the level of illness acceptance. The variables which shaped the level of illness acceptance in our patients included: improvement of health, intensity of symptoms, age, marital status, education level, place of residence, BMI, and the number of chronic diseases. All above mentioned variables should be considered during a design of prevention programs for patients with mixed chronic respiratory diseases.

A Comparative Study of Terminally Ill Hospice and Hospital Patients.

ERIC Educational Resources Information Center

Labus, Janet G.; Dambrot, Faye H.

1986-01-01

Investigated differences between 28 hospice and 28 hospital patients who died. Comparison found that hospice patients were younger, had more people living in the home, and had shorter disease history. Age, number of people living in the home, and primary cancer site significantly discriminated between hospice and hospital patients and predicted…

Proliferation and differentiation of adipose tissue in prolonged lean and obese critically ill patients.

PubMed

Goossens, Chloë; Vander Perre, Sarah; Van den Berghe, Greet; Langouche, Lies

2017-12-01

In prolonged non-obese critically ill patients, preservation of adipose tissue is prioritized over that of the skeletal muscle and coincides with increased adipogenesis. However, we recently demonstrated that in obese critically ill mice, this priority was switched. In the obese, the use of abundantly available adipose tissue-derived energy substrates was preferred and counteracted muscle wasting. These observations suggest that different processes are ongoing in adipose tissue of lean vs. overweight/obese critically ill patients. We hypothesize that to preserve adipose tissue mass during critical illness, adipogenesis is increased in prolonged lean critically ill patients, but not in overweight/obese critically ill patients, who enter the ICU with excess adipose tissue. To test this, we studied markers of adipogenesis in subcutaneous and visceral biopsies of matched lean (n = 24) and overweight/obese (n = 24) prolonged critically ill patients. Secondly, to further unravel the underlying mechanism of critical illness-induced adipogenesis, local production of eicosanoid PPARγ agonists was explored, as well as the adipogenic potential of serum from matched lean (n = 20) and overweight/obese (n = 20) critically ill patients. The number of small adipocytes, PPARγ protein, and CEBPB expression were equally upregulated (p ≤ 0.05) in subcutaneous and visceral adipose tissue biopsies of lean and overweight/obese prolonged critically ill patients. Gene expression of key enzymes involved in eicosanoid production was reduced (COX1, HPGDS, LPGDS, ALOX15, all p ≤ 0.05) or unaltered (COX2, ALOX5) during critical illness, irrespective of obesity. Gene expression of PLA2G2A and ALOX15B was upregulated in lean and overweight/obese patients (p ≤ 0.05), whereas their end products, the PPARγ-activating metabolites 15s-HETE and 9-HODE, were not increased in the adipose tissue. In vitro, serum of lean and overweight/obese prolonged critically ill

[Continuous drug infusion in terminal cancer].

PubMed

Ottesen, S; Manger, A T; Monrad, L

1992-05-30

Today's technology provides portable pumps which facilitate continuous infusion of drugs to relieve suffering in terminal disease. Subcutaneous and epidural infusion is now frequently used in our hospital. The most common indications are gastrointestinal obstruction, impaired absorption of drugs, refractory side effects of oral medication or poor compliance because good pain relief is no longer possible orally. During the last days of life, this method may be the only possible approach to good comfort and relief from terminal agitation and anxiety. Of the patients referred to the advisory group for seriously ill and dying in 1990, 64% received subcutaneous infusions and 15% epidural infusions during the last days or weeks of life. Continuous infusion of drugs from portable pumps has become an almost indispensible method of treatment in an ordinary clinic.

Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

ERIC Educational Resources Information Center

Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

2016-01-01

Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

Length of home hospice care, family-perceived timing of referrals, perceived quality of care, and quality of death and dying in terminally ill cancer patients who died at home.

PubMed

Yamagishi, Akemi; Morita, Tatsuya; Kawagoe, Shohei; Shimizu, Megumi; Ozawa, Taketoshi; An, Emi; Kobayakawa, Makoto; Tsuneto, Satoru; Shima, Yasuo; Miyashita, Mitsunori

2015-02-01

This study aims to clarify the length of home hospice care, family-perceived timing of referrals, and their effects on the family-perceived quality of care and quality of death and dying of terminally ill cancer patients who died at home and identify the determinants of perceived late referrals. A multicenter questionnaire survey was conducted involving 1,052 family members of cancer patients who died at home supported by 15 home-based hospice services throughout Japan. A total of 693 responses were analyzed (effective response rate, 66 %). Patients received home-based hospice care for a median of 35.0 days, and 8.0 % received home hospice care for less than 1 week. While 1.5 % of the families reported the timing of referrals as early, 42 % reported the timing as late or too late. The families of patients with a length of care of less than 4 weeks were more likely to regard the timing of referrals as late or too late. The patients of family members who regarded the timing of referrals as late or too late had a significantly lower perceived quality of care (effect size, 0.18; P = 0.039) and lower quality of death and dying (effect size, 0.15, P = 0.063). Independent determinants of higher likelihoods of perceived late referrals included: frequent visits to emergency departments, patient being unprepared for worsening condition, and patient having concerns about relationship with new doctor. Discharge nurse availability was independently associated with lower likelihoods of perceived late referrals. A significant number of bereaved families regarded the timing of referrals to home hospices as late, and the perceived timing was associated with the family-perceived quality of care and quality of death and dying. Systematic strategies to overcome the barriers related to perceived late referrals are necessary.

Cytokines in chronically critically ill patients after activity and rest.

PubMed

Winkelman, Chris; Higgins, Patricia A; Chen, Yea Jyh Kathy; Levine, Alan D

2007-04-01

Inflammation, a common problem for patients in the intensive care unit (ICU), frequently is associated with serious and prolonged critical illnesses. To date, no study has examined whether physical activity influences inflammatory factors in critically ill adults. The objectives of this study were to (a) examine the relationships between type and duration of physical activity and serum levels of interleukin 6 (IL-6), a proinflammatory cytokine; IL-10, an anti-inflammatory cytokine; and their ratio and (b) determine if there are associations between cytokines or their ratio and activity or outcomes. This descriptive feasibility study investigated the approaches to measuring levels of physical activity and its relationship to serum levels of IL-6 and IL-10 and the ratio between them in patients with prolonged mechanical ventilation during periods of activity and rest. Measurements included serum IL-6 and IL-10 levels, direct observation and actigraphy, and prospective chart review. Ten critically ill patients who were mechanically ventilated for an average of 10 days in a large, urban, teaching hospital were enrolled. The average ratio of IL-6 to IL-10 improved after an average of 14.7 min of passive physical activity, typically multiple in-bed turns associated with hygiene. IL-6, IL-10, and their ratio were not associated with patient outcomes of weaning success or length of stay. High levels of IL-6 were associated with mortality. Cytokine balance may be improved by low levels of activity among patients with prolonged critical illness. The pattern of cytokines produced after activity may improve patients' recovery from prolonged critical illness and mechanical ventilation.

Patients understanding of depression associated with chronic physical illness: a qualitative study

PubMed Central

2014-01-01

Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. Methods A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. Results We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. Conclusions People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment. PMID:24555886

Citrate Pharmacokinetics in Critically Ill Patients with Acute Kidney Injury

PubMed Central

Zhu, Qiuyu; Liu, Junfeng; Qian, Jing; You, Huaizhou; Gu, Yong; Hao, Chuanming; Jiao, Zheng; Ding, Feng

2013-01-01

Introduction Regional citrate anticoagulation (RCA) is gaining popularity in continous renal replacement therapy (CRRT) for critically ill patients. The risk of citrate toxicity is a primary concern during the prolonged process. The aim of this study was to assess the pharmacokinetics of citrate in critically ill patients with AKI, and used the kinetic parameters to predict the risk of citrate accumulation in this population group undergoing continuous veno-venous hemofiltration (CVVH) with RCA. Methods Critically ill patients with AKI (n = 12) and healthy volunteers (n = 12) were investigated during infusing comparative dosage of citrate. Serial blood samples were taken before, during 120 min and up to 120 min after infusion. Citrate pharmacokinetics were calculated and compared between groups. Then the estimated kinetic parameters were applied to the citrate kinetic equation for validation in other ten patients’ CVVH sessions with citrate anticoagulation. Results Total body clearance of citrate was similar in critically ill patients with AKI and healthy volunteers (648.04±347.00 L/min versus 686.64±353.60 L/min; P = 0.624). Basal and peak citrate concentrations were similar in both groups (p = 0.423 and 0.247, respectively). The predicted citrate curve showed excellent fit to the measurements. Conclusions Citrate clearance is not impaired in critically ill patients with AKI in the absence of severe liver dysfunction. Citrate pharmacokinetic data can provide a basis for the clinical use of predicting the risk of citrate accumulation. Trial Registration ClinicalTrials.gov Identifier NCT00948558 PMID:23824037

Patient compliance in hypertension: role of illness perceptions and treatment beliefs.

PubMed

Ross, S; Walker, A; MacLeod, M J

2004-09-01

Despite many years of study, questions remain about why patients do or do not take medicines and what can be done to change their behaviour. Hypertension is poorly controlled in the UK and poor compliance is one possible reason for this. Recent questionnaires based on the self-regulatory model have been successfully used to assess illness perceptions and beliefs about medicines. This study was designed to describe hypertensive patients' beliefs about their illness and medication using the self-regulatory model and investigate whether these beliefs influence compliance with antihypertensive medication. We recruited 514 patients from our secondary care population. These patients were asked to complete a questionnaire that included the Beliefs about Medicines and Illness Perception Questionnaires. A case note review was also undertaken. Analysis shows that patients who believe in the necessity of medication are more likely to be compliant (odds ratio (OR)) 3.06 (95% CI 1.74-5.38), P<0.001). Other important predictive factors in this population are age (OR 4.82 (2.85-8.15), P<0.001), emotional response to illness (OR 0.65 (0.47-0.90), P=0.01) and belief in personal ability to control illness (OR 0.59 (0.40-0.89), P=0.01). Beliefs about illness and about medicines are interconnected; aspects that are not directly related to compliance influence it indirectly. The self-regulatory model is useful in assessing patients health beliefs. Beliefs about specific medications and about hypertension are predictive of compliance. Information about health beliefs is important in achieving concordance and may be a target for intervention to improve compliance.

Liaison psychiatry professionals' views of general hospital care for patients with mental illness: The care of patients with mental illness in the general hospital setting.

PubMed

Noblett, J; Caffrey, A; Deb, T; Khan, A; Lagunes-Cordoba, E; Gale-Grant, O; Henderson, C

2017-04-01

Explore the experiences of liaison psychiatry professionals, to gain a greater understanding of the quality of care patients with mental illness receive in the general hospital setting; the factors that affect the quality of care; and their insights on interventions that could improve care. A survey questionnaire and qualitative in depth interviews were used to collect data. Data collection took place at the Royal College of Psychiatrists Faculty of Liaison Psychiatry Annual conference. Qualitative analysis was done using thematic analysis. Areas of concern in the quality of care of patients with co-morbid mental illness included 'diagnostic overshadowing', 'poor communication with patient', 'patient dignity not respected' and 'delay in investigation or treatment'. Eleven contributing factors were identified, the two most frequently mentioned were 'stigmatising attitudes of staff towards patients with co-morbid mental illness' and 'complex diagnosis'. The general overview of care was positive with areas for improvement highlighted. Interventions suggested included 'formal education' and 'changing the liaison psychiatry team'. The cases discussed highlighted several areas where the quality of care received by patients with co-morbid mental illness is lacking, the consequences of which could be contributing to physical health disparities. It was acknowledged that it is the dual responsibility of both the general hospital staff and liaison staff in improving care. Copyright © 2017 Elsevier Inc. All rights reserved.

Care Coordination for the Chronically Ill: Understanding the Patient's Perspective

PubMed Central

Maeng, Daniel D; Martsolf, Grant R; Scanlon, Dennis P; Christianson, Jon B

2012-01-01

Objective To identify factors associated with perception of care coordination problems among chronically ill patients. Methods Patient-level data were obtained from a random-digit dial telephone survey of adults with chronic conditions. The survey measured respondents' self-report of care coordination problems and level of patient activation, using the Patient Activation Measure (PAM-13). Logistic regression was used to assess association between respondents' self-report of care coordination problems and a set of patient characteristics. Results Respondents in the highest activation stage had roughly 30–40 percent lower odds of reporting care coordination problems compared to those in the lowest stage (p < .01). Respondents with multiple chronic conditions were significantly more likely to report coordination problems than those with hypertension only. Respondents' race/ethnicity, employment, insurance status, income, and length of illness were not significantly associated with self-reported care coordination problems. Conclusion We conclude that patient activation and complexity of chronic illness are strongly associated with patients' self-report of care coordination problems. Developing targeted strategies to improve care coordination around these patient characteristics may be an effective way to address the issue. PMID:22985032

[Patient-caregiver relationship: when illness blogs step in].

PubMed

Rondi, Céline; Berney, Alexandre

2014-02-12

The use of social media as a communication tool is rapidly growing in the community, and more specifically in patients, through illness blogs. This has been true for several years in North America, but is becoming a reality in Europe as well. We report here the first results of studies on the putative psychological benefits and risks of illness blogs for their authors. We also explore the possible impact of blogging on the patient-caregiver relationship. Social media are expected to have a growing influence in certain areas of health care. Physicians should therefore stay informed about them, take advantage of their benefits, and anticipate their risks.