Twenty years beyond medical school: physicians' attitudes toward death and terminally ill patients.

BACKGROUND: In response to consumer demands and recent changes in health care, the American Medical Association and the Association of American Medical Colleges have expressed concern about how physicians relate to patients, especially those who are seriously ill. OBJECTIVE: To determine the impact of 20 years of medical practice on the attitudes of physicians toward terminally ill patients and their families. METHODS: Data were gathered from questionnaires mailed in 1976 and again in 1996 to physicians who graduated from medical school between 1972 and 1975. RESULTS: Responses were received from 71% and 63% of the 1664 and 1109 physicians surveyed in 1976 and 1996, respectively. Using a t test for paired variables, statistically significant differences were noted for physicians' responses to all of the 11 Likert-type attitudinal statements on death and terminally ill patients and their families. Physicians in 1996 were more willing to inform terminally ill patients of their prognosis and in general seemed more confident with dying patients than they were in 1976. CONCLUSIONS: After 2 decades of practicing medicine, physicians' attitudes toward terminally ill patients seem to have changed; physicians appear to be more open to communicating with terminally ill patients and their families on issues concerning death and dying.     

Mind frames towards dying and factors motivating their adoption by terminally ill elders

OBJECTIVE: This study was designed to advance the understanding of the physical and psychosocial factors that motivate terminally ill elders not only to consider a hastened death but also not to consider such a death. METHODS: I conducted face-to-face in-depth qualitative interviews with 96 terminally ill elders. An inductive approach was taken to locating themes and patterns regarding factors motivating terminally ill elders to consider or not to consider hastening death. RESULT: Six mind frames towards dying emerged: (a) neither ready nor accepting; (b) not ready but accepting; (c) ready and accepting; (d) ready, accepting, and wishing death would come; (e) considering a hastened death but having no specific plan; and (f) considering a hastened death with a specific plan. From the data emerged approaches towards dying and accompanying emotions characterizing each mind frame, as well as factors motivating their adoption by elders. The results showed that psychosocial factors served more often than physical factors as motivators. DISCUSSION: The results demonstrate the importance of assessing the mind frame adopted by a terminally ill elder and his or her level of satisfaction with it. Terminally ill elders may experience a higher quality dying process when a traditional medical care approach is replaced by a holistic approach that addresses physical, spiritual, emotional, and social needs.     

宁养医疗服务与有尊严的死亡

随着科技的进步和文明的发展,临终与死亡问题越来越受到人们的关注。而医疗水平的提高以及人口的逐渐老龄化则使得终末期疾病患者的数量持续增加,病程延长。终末期患者的宁养医疗服务又称之为安宁缓和医疗,旨在最大程度的减轻患者的痛苦、避免无谓的治疗从而提高生活质量并做到有尊严的死亡。目前国内在该领域的研究起步较晚,投入尚嫌不足,存在许多亟待解决的问题。临床现状凸显了宁养服务的重要性和紧迫性,本文拟就相关问题做一阐述。     

Factors influencing death at home in terminally ill cancer patients

Aim: The purpose of this study is to investigate factors affecting terminally ill cancer patients dying at home. Material: Ninety‐two terminally ill cancer patients who were receiving home medical care services and died between April 2005 and December 2006 were included in the study. The data included patients' and caregivers' demographic characteristics, disease‐related information, place of death, and status of home care support. To identify the factors predicting the place of death, multivariate logistic regression analyses were performed. Results: Patients of families who had no preference regarding the place of death or a preference for death at home were more likely to die at home (vs preference for hospital death, odds ratio = 5.87, 95% confidence interval = 1.02–36.53; odds ratio = 90.35, 95% confidence interval = 8.15–1001.51, respectively) after adjusting for potential confounders. Meanwhile, if the patient's family preferred that the patient not die at home, the patient's place of death was not at his/her home irrespective of his/her preference. Conclusion: The results suggested the stronger involvement of families' preferences regarding the patients' place of death over patients' own preferences. Therefore, factors affecting families' preferences need to be clarified for the dissemination of death at home for terminally ill cancer patients.     

Dying well after discontinuing the life-support treatment of dialysis

BACKGROUND: Cessation of life-prolonging treatments precedes death in an increasing number of cases, but little attention has been accorded to the quality of dying. OBJECTIVE: To examine the quality of dying following dialysis termination. PATIENTS AND METHODS: A prospective cohort, observational study involved 6 dialysis clinics in the United States and 2 clinics in Canada, and 131 adult patients receiving maintenance dialysis who died after treatment cessation. Sixty percent (n = 79) underwent patient (n = 23) and/or family (n = 76) interviews and follow-up with caretakers. A quality of dying tool quantified duration, pain and suffering, and psychosocial factors. RESULTS: The sample was 59% female, the age was 70.0+/-1.2 years old, the duration of dialysis was 34.0+/-2.8 months, and death occurred 8.2+/-0.7 days after the last dialysis treatment. (Data are given as mean +/- SE.) Thirty-eight percent of the subjects who completed the protocol were judged to have had very good deaths, 47% had good deaths, and 15% had bad deaths. During the last day of life, 81% of the sample did not suffer, although 42% had some pain and an additional 5% had severe pain. According to the psychosocial domain of the quality of dying measure, patients who died at home or with hospice care had better deaths than those who died in a hospital or nursing home. CONCLUSIONS: Most deaths following withdrawal of dialysis were good or very good. The influence of site of death and physician attitudes about decisions to stop life support deserves more research attention. Quality of dying tools can be used to establish benchmarks for the provision of terminal care.     

Hospice care and the emergency department: rules, regulations, and referrals

Emergency clinicians often care for patients with terminal illness who are receiving hospice care and many more patients who may be in need of such care. Hospice care has been shown to successfully address the multidimensional aspects of the end-of-life concerns of terminally ill patients: dying with dignity, dying without pain, reducing the burden on family and caregivers, and achieving a home death, when desired. Traditional emergency medicine training may fail to address hospice as a system of care. When they are unfamiliar with the hospice model, emergency clinicians, patients, and caregivers may find it difficult to properly use and interact with these care services. Potential poor outcomes include the propagation of misleading or inaccurate information about the hospice system and the failure to guide appropriate patient referrals. This article reviews the hospice care service model and benefits offered, who may qualify for hospice care, common emergency presentations in patients under hospice care, and a stepwise approach to initiating a hospice care referral in the emergency department.     

Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine

When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.     

The physician's role with the terminally ill patient

The physician encounters many issues and problems when working with the terminally ill. It is important to remember that the most important aspect of care for the dying is to maintain open and honest communication among the doctor, the patient, and the family. In brief, the physician should play a major role in helping the dying patient. Open communication and support must be continually provided by the physician, both to the dying patient and to the family. All it takes, basically, is common sense and human compassion. No matter how often the physician treats dying patients, he or she should never be casual or matter-of-fact about death. Death should always command respect and awe, but it need never terrorize us or cause us to turn away from providing help to the dying patient. Those who care for the terminally ill may find, to their surprise, that great satisfaction can be derived from this work. One becomes enriched by observing the courage of many dying patients. Therein lies the challenge and the reward.     

The status of medical education in end-of-life care

OBJECTIVE: To assess the status of medical education in end-of-life care and identify opportunities for improvement. DESIGN: Telephone survey. SETTING: U.S. academic medical centers. PARTICIPANTS: National probability sample of 1,455 students, 296 residents, and 287 faculty (response rates 62%, 56%, and 41%, respectively) affiliated with a random sample of 62 accredited U.S. medical schools. MEASUREMENTS AND MAIN RESULTS: Measurements assessed attitudes, quantity and quality of education, preparation to provide or teach care, and perceived value of care for dying patients. Ninety percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. However, fewer than 18% of students and residents received formal end-of-life care education, 39% of students reported being unprepared to address patients' fears, and nearly half felt unprepared to manage their feelings about patients' deaths or help bereaved families. More than 40% of residents felt unprepared to teach end-of-life care. More than 40% of respondents reported that dying patients were not considered good teaching cases, and that meeting psychosocial needs of dying patients was not considered a core competency. Forty-nine percent of students had told patients about the existence of a life-threatening illness, but only half received feedback from residents or attendings; nearly all residents had talked with patients about wishes for end-of-life care, and 33% received no feedback. CONCLUSIONS: Students and residents in the United States feel unprepared to provide, and faculty and residents unprepared to teach, many key components of good care for the dying. Current educational practices and institutional culture in U.S. medical schools do not support adequate end-of-life care, and attention to both curricular and cultural change are needed to improve end-of-life care education.     

Responding to legal requests for physician-assisted suicide. University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel

In 1998, 15 terminally ill Oregon residents ended their lives with overdoses of medications supplied legally by their physicians. Many more people consider this possibility. This paper examines the ways in which the physician's response to requests for assisted suicide may change in an era of legalization, articulates some of the resulting conceptual challenges, and provides practical advice to physicians facing such requests. In areas where it is legal, assisted dying becomes one of the many options that can be freely considered for terminally ill patients with extreme suffering. Some patients even view assisted death as a right that can be expected on demand. We consider the ethical implications of disclosing assisted dying to patients as an option of last resort and suggest that physicians working in environments where assisted dying is legal are obliged to do so. However, we conclude that physicians should not encourage patients to hasten death even when practicing in jurisdictions that allow assisted dying. Furthermore, without abandoning the model, we suggest that strict informed consent does not fully address patients' needs at this time. Physicians must also focus on patients' broader biopsychosocial concerns and help them identify solutions through empathic listening and emotional support. We provide a framework and vocabulary for physicians to use when responding to requests for assisted suicide. Physicians should clarify the request, explore and address the patient's concerns, achieve a shared understanding of the goals of treatment, search for less harmful alternatives, express to the patient what they are willing to do, discuss the relevant legal issues, and share their decision making with colleagues.     

What do family members notice following an intervention to improve mobility and incontinence care for nursing home residents? An analysis of open-ended comments

PURPOSE: The purpose of this study was to evaluate the sensitivity of family members' responses to open-ended interview questions about an intervention to improve incontinence and mobility care for their relative in a nursing home. DESIGN AND METHODS: The study was a randomized, controlled intervention trial with incontinent nursing home residents (N = 145), wherein research staff provided toileting and walking assistance of sufficient intensity to significantly improve continence and mobility outcomes in the treatment group. Interviewers posed open-ended interview questions to family members after 8 weeks of intervention to assess if they noticed a difference in care. RESULTS: Family responses to open-ended questions showed that, compared to the control group, the intervention group noticed significant overall improvement in incontinence and mobility care and in residents' outcomes in mobility. IMPLICATIONS: Families' responses to open-ended questions were sensitive to improvements in incontinence and mobility care and may provide evidence for important care quality differences that would be missed if only direct satisfaction and discrepancy-based closed-ended questions were asked.     

Attitudes and practices of U.S. oncologists regarding euthanasia and physician-assisted suicide

BACKGROUND: The practices of euthanasia and physician-assisted suicide remain controversial. OBJECTIVE: To achieve better understanding of attitudes and practices regarding euthanasia and physician-assisted suicide in the context of end-of-life care. DESIGN: Cohort study. SETTING: United States. PARTICIPANTS: 3299 oncologists who are members of the American Society of Clinical Oncology. MEASUREMENTS: Responses to survey questions on attitudes toward euthanasia and physician-assisted suicide for a terminally ill patient with prostate cancer who has unremitting pain, requests for and performance of euthanasia and physician-assisted suicide, and sociodemographic characteristics. RESULTS: Of U.S. oncologists surveyed, 22.5% supported the use of physician-assisted suicide for a terminally ill patient with unremitting pain and 6.5% supported euthanasia. Oncologists who were reluctant to increase the dose of intravenous morphine for terminally ill patients in excruciating pain (odds ratio [OR], 0.61 [95% CI, 0.48 to 0.77]) and had sufficient time to talk to dying patients about end-of-life care issues (OR, 0.79 [CI, 0.71 to 0.87]) were less likely to support euthanasia or physician-assisted suicide. During their career, 3.7% of surveyed oncologists had performed euthanasia and 10.8% had performed physician-assisted suicide. Oncologists who were reluctant to increase the morphine dose for patients in excruciating pain (OR, 0.58 [CI, 0.43 to 0.79]) and those who believed that they had received adequate training in end-of-life care (OR, 0.86 [CI, 0.79 to 0.95]) were less likely to have performed euthanasia or physician-assisted suicide. Oncologists who reported not being able to obtain all the care that a dying patient needed were more likely to have performed euthanasia (P = 0.001). CONCLUSIONS: Requests for euthanasia and physician-assisted suicide are likely to decrease as training in end-of-life care improves and the ability of physicians to provide this care to their patients is enhanced.     

Physicians’ Responsibilities for Deaths Occurring at Home

Deaths occurring at home are increasing in the United States. Primary care physicians and trainees may not be explicitly taught about management of deaths in the home. Physician responsibilities for expected and unexpected deaths at home are summarized. The medical examiner should be contacted if death was due to natural disease processes but occurred suddenly or when a physician was not treating the decedent. Police and emergency personnel are often called after terminally ill individuals have died at home, which may cause significant family distress and is typically not necessary if the death was expected. Clinicians should counsel patients and families on managing expected deaths without involving emergency personnel. There is also the question of autopsy, which has become less common throughout the country. Although there are no requirements for physicians to ask families whether they want an autopsy if the death occurred at home, unexpected deaths should be referred to the medical examiner for possible forensic or medicolegal autopsy. If the medical examiner declines the case, the family can be offered private‐pay autopsy; costs can exceed $3000. Regarding the completion of death certificates, it is appropriate for the physician to write “probable’’ or “presumed” for diagnoses when the precise cause of death at home is uncertain. After a person has died, clinicians can still offer significant postmortem guidance and closure to the family.     

Asking the Right Questions: Views on Genetic Variation Research Among Black and White Research Participants

Background  Genetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported. Objective  To dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race. Design  Cross-sectional study. Participants  801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS). Measures  Qualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race. Results  Open-ended queries about GVR resulted in few “negative” responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p = 0.008), not benefit minorities (29% vs. 14%, p=<0.001), reinforce racism (32% vs. 20%, p = 0.002), and use minorities as guinea pigs (27% vs. 6%, p < 0.001). Overall, after adjustment for potential confounding factors, African-American race remained inversely associated with feeling “very positive” about GVR (46% vs. 57%, p = 0.035). In contrast, African Americans were as likely as whites to express willingness to participate in future GVR studies (46%). Conclusions  Open-ended questions about GVR were unlikely to spontaneously generate “negative” responses. In contrast, when presented specific examples of potentially negative implications, more respondents agreed, and minorities were more likely to express concerns. This suggests that while participants appear generally positive about GVR, their inability to articulate views regarding these complex concepts may require that researchers engage lay audiences, ensure accurate understanding, and provide them with language to express concerns.