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。     

Managing end-of-life care: comparing the experiences of terminally Ill patients in managed care and fee for service

There have been no published empirical studies comparing the experiences of terminally ill patients in managed care organizations (MCOs) and those in fee for service (FFS). This investigation represents the first empirical study to systematically compare substantive outcomes between populations of terminally ill patients enrolled in MCO and FFS healthcare delivery systems. The investigators interviewed 988 patients whose physicians judged them to be terminally ill and 893 of their caregivers. Outcomes assessments were made in six domains: patient-physician relationship; access to care and use of health care; prevalence of symptoms; and planning for end-of-life care, care needs, and economic burdens. Overall, the two populations of terminally ill patients were found to have comparable outcomes, but several significant differences were present. MCO patients were more likely than their FFS counterparts to use an inconvenient hospital (P =.02), spend more than 10% of their income on medical care (P =.02), and have been bedridden more than 50% of the time during the last 4 weeks of life (P =.03). Caregivers of MCO patients were as likely as the caregivers of FFS patients to report a substantial caregiving burden (P =.59). Despite concerns about the threats of MCOs to the physician-patient relationship, few differences in the quality of the relationship between the two cohorts were found. Finally, terminally ill patients in MCOs did not show better experiences than those in FFS on any outcome measure. Additional research is required to explore how MCOs may improve upon the care available to dying patients.     

Quality‐of‐Life Trajectories at the End of Life: Assessments over Time by Patients with and without Cancer

OBJECTIVES: To compare quality‐of‐life (QOL) ratings of terminally ill patients with and without cancer over time. DESIGN: Secondary analysis of prospective data from a randomized clinical trial. SETTING: Trial conducted with terminally ill patients in Seattle, Washington, testing the efficacy of massage and guided meditation in improving patients' QOL. PARTICIPANTS: One hundred sixty‐seven trial participants, of whom 127 provided follow‐up data and died before data analysis. MEASUREMENTS: At enrollment, participants reported demographic characteristics, symptom distress, QOL, and primary life‐limiting diagnosis. At enrollment and at follow‐up interviews after every two study‐provided treatment sessions, participants rated their perceived quality of life on a scale from 0 (no quality of life) to 10 (perfect quality). At the end of the study, the investigators added measures of patient's survival status, number of days between study enrollment and death, and receipt of hospice services to the data set. RESULTS: Multilevel models showed significantly steeper QOL declines for patients with cancer than for those without after adjustment for time between study enrollment and death. Over a 4‐month before‐death period, the average patient without cancer was estimated to experience a QOL decline of approximately 0.6 on a scale from 0 to 10, compared with a 1.2‐point decline for patients with cancer. CONCLUSION: Patients with cancer face more‐precipitous end‐of‐life challenges to quality of life than do other terminally ill persons. Therefore, clinicians must address QOL issues—not just symptom burden and distress. By introducing and discussing expected QOL declines at the end of life, clinicians may help to prepare, support, and reassure patients and their families.     

Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?

BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and bereavement is stressful and/or helpful. METHODS: Patients from 6 sites in the United States who were estimated to have 6 months or less to live were interviewed in person and reinterviewed 2 to 6 months later. Their caregivers were interviewed separately. At the end of the interviews, patients and caregivers were asked how stressful and how helpful the interview had been. Of 1131 eligible patients, 988 (87.4%) were interviewed, and of 915 eligible caregivers, 893 (97.6%) were interviewed. RESULTS: At the end of the first interview, 1.9% of the patients reported having experienced a great deal of stress, 7.1% some stress, and 88.7% little or no stress from the interview. Among the caregivers, 1.5% reported a great deal of stress, 8.4% some stress, and 89.7% little or no stress. Slightly more stress was reported to have been caused by the reinterview. Overall, 16.9% of the patients reported the initial interview as very helpful, 29.6% as somewhat helpful, and 49.6% as offering little or no help. Among the caregivers, 19.1% reported the initial interview as very helpful, 34.3% as somewhat helpful, and 44.9% as offering little or no help. The reported helpfulness of the second interview was slightly less. Patients experiencing pain (odds ratio [OR], 1.26; 95% confidence interval [CI], 1.02-1.56), more personal meaning in dying (OR, 3.05; 95% CI, 2.02-4.59), and less ease with talking about the end of life (OR, 1.32; 95% CI, 1.09-1.60) were significantly more likely to report stress. Patients who were from an ethnic minority (OR, 1.85; 95% CI, 1.31-2.63), anxious about the end of their life (OR, 1.39; 95% CI 1.16-1.67), more spiritual (OR, 1.30; 95% CI, 1.06-1.61), and serene (OR, 1.25; 95% CI, 1.08-1.45) were significantly more likely to report the interview helpful. There was no relationship between stress and helpfulness. CONCLUSIONS: Terminally ill patients and their caregivers can discuss death, dying, and bereavement in a structured interview with minimal stress and report that the interview was helpful. Institutional review boards should not preemptively restrict surveys with terminally ill patients without reliable evidence that they will be stressful or otherwise harmful.     

Treating depression in terminally ill patients can optimize their physical comfort at the end of life and provide them the opportunity to confront and prepare for death

The dying process is characterized by feelings of sadness and fear. It is normal for patients at the end of life to worry and grieve the loss of their health. However, when these feelings become excessive and interfere with all aspects of the patient's life, they are abnormal responses to the stress of terminal illness. Screening for depression in terminally ill patients can optimize their physical comfort at the end of life and provide them the opportunity to confront and prepare for death.     

Does Hospice Improve Quality of Care for Persons Dying from Dementia?

OBJECTIVES: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members. DESIGN: Mortality follow‐back survey. SETTING: Death certificates were drawn from five states (AL, FL, TX, MA, and MN). PARTICIPANTS: Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death. MEASUREMENTS: Ratings of the quality of end‐of‐life care, perceptions of unmet needs, and opportunities to improve end‐of‐life care. Two questions were also asked about the peacefulness of dying and quality of dying. RESULTS: Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR)=0.49, 95% confidence interval (CI)=0.33–0.74) and a higher rating of the quality of care (AOR=2.0, 95% CI=1.53–2.72). They also noted better quality of dying than those without hospice services. CONCLUSION: Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying.     

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.     

Characteristics of patients requesting and receiving physician-assisted death

BACKGROUND: Surveys have shown that physicians in the United States report both receiving and honoring requests for physician assistance with a hastened death. The characteristics of patients requesting and receiving physician aid in dying are important to the development of public policy. OBJECTIVE: To determine patient characteristics associated with acts of physician-assisted suicide. DESIGN: Physicians among specialties involved in care of the seriously ill and responding to a national representative prevalence survey on physician-assisted suicide and euthanasia were asked to describe the demographic and illness characteristics of the most recent patient whose request for assisted dying they refused as well as the most recent request honored. RESULTS: Of 1902 respondents (63% of those surveyed), 379 described 415 instances of their most recent request refused and 80 instances of the most recent request honored. Patients requesting assistance were seriously ill, near death, and had a significant burden of pain and physical discomfort. Nearly half were described as depressed at the time of the request. The majority made the request themselves, along with family. In multivariate analysis, physicians were more likely to honor requests from patients making a specific request who were in severe pain (odds ratio, 2.4; 95% confidence interval, 1.01-5.7) or discomfort (odds ratio, 6.5; 95% confidence interval, 2.6-16.1), had a life expectancy of less than 1 month (odds ratio, 4.3; 95% confidence interval, 1.7-10.8), and were not believed to be depressed at the time of the request (odds ratio, 0.2; 95% confidence interval, 0.1-0.5). CONCLUSION: Persons requesting and receiving assistance in dying are seriously ill with little time to live and a high burden of physical suffering.     

Haemophilia Utilization Group Study – Part Va (HUGS Va): design,methods and baseline data

Summary. To describe the study design, procedures and baseline characteristics of the Haemophilia Utilization Group Study – Part Va (HUGS Va), a US multi‐center observational study evaluating the cost of care and burden of illness in persons with factor VIII deficiency. Patients with factor VIII level ≤30%, age 2–64 years, receiving treatment at one of six federally supported haemophilia treatment centres (HTCs) were enrolled in the study. Participants completed an initial interview including questions on socio‐demographical characteristics, health insurance status, co‐morbidities, access to care, haemophilia treatment regimen, factor utilization, self‐reported joint pain and motion limitation and health‐related quality of life. A periodic follow‐up survey collected data regarding time lost from usual activities, disability days, health care utilization and outcomes of care. HTC clinicians documented participants’ baseline clinical characteristics and pharmacy dispensing records for 2 years. Between July 2005 and July 2007, 329 participants were enrolled. Average age was 9.7 years for children and 33.5 years for adults; two‐thirds had severe haemophilia. The distributions of age, marital status, education level and barriers to haemophilia care were relatively consistent across haemophilic severity categories. Differences were found in participants’ employment status, insurance status and income. Overall, children with haemophilia had quality of life scores comparable to healthy counterparts. Adults had significantly lower physical functioning than the general US population. As one of the largest economic studies of haemophilia care, HUGS Va will provide detailed information regarding the burden of illness and health care utilization in the US haemophilia A population.     

Experience of dying: concerns of dying patients and of carers

Background: Terminally ill patients frequently express concerns about what dying will be like: how their bodies may change as disease progresses, how medication may alter the effect of these changes and whether and how their preferences will be respected as they become more ill. Methods: Thirty‐six patients admitted to a hospice were interviewed and 18 carers of patients of the Palliative Care service, who had died participated in focus groups. Thirty‐three patients had advanced malignant disease, 13 were women; their mean age was 68 years (range 44–92 years). Results: The areas of concern consistently identified by patients were (i) privacy and autonomy, principally in regard to families, (ii) a lack of information about physical changes and medication use as death approached and (iii) the desire to shorten life, which was expressed by all patients. Carers recalled problems accessing services and support and had needed more help with practical issues such as medication timing and dose. They believed that not enough information about the patients’ illnesses had been given to them and they were insistent that carers should have information against the wishes of patients. Conclusion: Some of the patients’ and carers’ concerns can be readily addressed. Others, particularly access to confidential information, cannot be addressed without a realignment of professional ethical standards and community expectations. The patients’ discussions of their desire to shorten life may have implications for the debate on euthanasia and physician‐assisted suicide.     

Audit of the care of the dying in a network of hospitals and institutions in Queensland

Background: Most Australians die in institutions and there is evidence to suggest that the care of these patients is not always optimal. Care pathways for the dying have been designed to transfer benchmarked hospice care to other settings (e.g. acute hospitals and residential age‐care facilities) by defining goals of best care, providing guidelines to provide that care and documenting outcome. Method: A retrospective audit was undertaken across a network of health‐care institutions in Queensland. The 18 goals considered essential for the care of the dying within the Liverpool Care Pathway were taken as a benchmark. Documentation of achievement of each of these goals was sought. Results: The notes of 160 patients who had died in eight institutions (four hospitals, three hospices, one nursing home) were reviewed. Several areas for improvement were identified, particularly in those goals relating to communication, resuscitation orders and care after death. Few units documented the provision of written information to families. Most patients were prescribed medications in anticipation of pain and agitation but less were prescribed drugs for other common symptoms in the dying. Most of the goals were achieved in a higher percentage of cases in hospice units. Marked differences in practice were noted between different institutions. Conclusion: The audit identified several aspects in the care of the terminally ill that could be improved. End‐stage pathways may provide a model for improving the care of patients dying in hospitals and institutions in Australia.     

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.     

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.     

Longitudinal changes in attitudes of offspring concerning life-sustaining measures for their terminally ill parents

OBJECTIVES: To define longitudinal changes in the attitudes of offspring concerning life-sustaining measures for their older, terminally ill parents and to determine whether experience of a "life event" influences such decisions. DESIGN: An attitudinal survey of three groups. SETTING: The geriatric department of a university-affiliated general hospital. PARTICIPANTS: Fifty-one subjects who had been interviewed regarding life-sustaining treatment for their terminally ill parents were reinterviewed 6 years later. In addition, a control group composed of 116 participants was generated from patients visiting hospital outpatient clinics. The control group had no prior experience involving hospitalization of a first-degree relative as a result of a life-threatening situation. INTERVENTIONS: Each subject took part in a personal interview. MAIN OUTCOME MEASURES: Attitudes regarding life-sustaining measures were assessed, and the subjects' sociodemographic and religious characteristics were noted. RESULTS: The attitudes of offspring in the acute phase situation and after the passage of 6 years were strikingly consistent. Twenty-one percent had requested the initiation of resuscitation in the acute phase ("real time"), and 27.4% said the same 6 years later. The provision of nutrition and medication was requested by approximately 70% of participants both at the acute phase and 6 years later. When comparing each individual's personal views at the interviews with all others, consistency in attitude was found among answers to most questions. When comparing the acute phase group with the control group, a significantly higher percentage of the former requested the initiation of resuscitation (48.3% vs 25%), whereas a smaller percentage preferred that the decision be made by the physician (3.5% vs 21.3%). Active euthanasia was requested by 6.5% of the acute phase group and 12.9% of the control group. CONCLUSIONS: The decisions made by offspring regarding life-sustaining measures for their terminally ill parent at real time remain unchanged 6 years after the event. Exposure to a life event significantly affects the decision-making of the offspring of a terminally ill parent. However, the subject's attitude toward extreme solutions--opposing active euthanasia and requesting the administration of nutrition and medication--was not influenced by the fact that the subject had undergone a life event.     

The last 48 hours of life in long-term care: a focused chart audit

OBJECTIVES: As a component of palliative care educational program development, the faculty at the University of Ottawa Institute of Palliative Care wished to assess end-of-life care for patients in long-term care (LTC) settings to develop an educational strategy for physicians. DESIGN: A chart audit, focusing on the last 48 hours of life of residents dying in LTC facilities. SETTING: Five LTC facilities in a city in Canada. PARTICIPANTS: Residents who died in the LTC facilities in a 12-month period. Those who died suddenly (i.e., with no palliation period) or in a hospital were excluded. MEASUREMENTS: Symptoms highlighted in the literature as commonly found in the terminally ill and the matching treatments were recorded on an audit form created by the authors. Included were pain, dyspnea, noisy breathing, delirium, dysphagia, fever, and myoclonus. RESULTS: One hundred eighty-five charts were reviewed. A large number of patients were cognitively impaired. Cancer was the final diagnosis in 14% of cases. Respiratory symptoms were the most prevalent symptom, with dyspnea being first and noisy breathing third. Pain was second, with a prevalence similar to that found in studies of cancer patients. Dyspnea was not treated in 23% of the patients with this symptom; opioids were used in only 27% of cases with dyspnea. Ninety-nine percent of patients who experienced pain were treated for it. Less than one-third of patients with noisy breathing were treated. Delirium was not treated in 38% of the cases, and no anti-dopaminergic medications were administered. Nurses were primarily responsible for documenting end-of-life issues, supporting the families of the dying residents, and communicating with other team members. CONCLUSION: The focused chart audit identified the high prevalence of cognitive impairment in the patient population, which complicates symptom management. Respiratory symptoms predominated in the last 48 hours of life. This symptom profile differs from that of cancer patients, who, according to the literature, have more pain and less respiratory trouble. Management of symptoms was variable. Nurses played a crucial role in the care of dying residents through their documentation and communication of end-of-life issues. Appropriate palliative care education can provide knowledge and skills to all health-care professionals, including physicians, and assist them in the control of symptoms and improvement of quality of life for patients dying in LTC facilities.     

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.