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。     

Non-medical palliative care and education to improve end-of-life care at geriatric health services facilities: A nationwide questionnaire survey of chief nurses

Background:   Geriatric health services facilities (GHSF) are expected to assume a growing role in caring for the dying elderly. However, research in this area has so far been scant. The purpose of the present study is to reveal the status of non-medical palliative care and staff education aiming at improving and enhancing end-of-life care at GHSF.
Methods:   The subjects were 2876 chief nurses of GHSF. Data was collected through a mailed questionnaire in 2003. The questionnaire covered the following: (i) staff perception of end-of-life care policies; (ii) staff education; and (iii) available non-medical care. To evaluate the factors correlated with end-of-life care policies at GHSF, we divided the facilities into two groups.
Results:   We analyzed the answers collected from 313 facilities with a progressive policy toward end-of-life care (PP group) and 818 with a regressive policy toward it (RP group). It was found that staff training was conducted more frequently among PP facilities. Generally, nurses in the PP facilities were more confident that they could provide comprehensive on-site end-of-life care and grieving support, but did not feel so sure about their ability to provide better end-of-life environments for dying residents and family by organizing outside support from voluntary and/or governmental organizations and religious organization for healing and to pursue appropriately a written follow-up communication with the bereaved family.
Conclusions:   Our results suggest that providing GHSF staff with education about end-of-life issues or setting up collaboration with the outside is an important factor to enhance overall end-of-life care at these facilities.     

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.     

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.     

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.     

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.     

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.     

HIV-positive women and minority patients' satisfaction with inpatient hospital care

Although patient satisfaction has been examined in relation to HIV services for ambulatory and managed care, less is known about perceptions of hospital care, particularly for HIV-positive women and minorities. The purpose of this study was to examine HIV-positive women and minority patients' satisfaction with hospital care. The study was part of a larger funded study that explored potential health care disparities for HIV-positive women and minority persons in the era of HIV combination drug therapy. A convenience sample of 50 HIV-positive persons was recruited from four medical centers/hospitals in a South Florida community. The multi-ethnic sample included 31 women and 19 men. The survey tool used was Cleary's HIV-Infected Patient's In-Hospital Questionnaire. Findings revealed that participants were generally satisfied with their hospital care. Physicians, nurses, and the hospital environment received satisfactory ratings. However, several problem areas were identified, including pain management and education on side effects of HIV medications, indicating the need for interventions to improve care. Experimental AIDS drugs were discussed with less than half of the participants, suggesting that HIV-positive women and minority patients may not have equal access to clinical drug trials. Further research is also needed to determine whether attitudes conveyed by health care providers influence HIV-positive patients to be wary of advance directives. The competence of nurses experienced in acute-care nursing of persons with HIV/AIDS was an important factor in patient satisfaction. A lack of experienced acute-care AIDS nurses may ultimately lead to a decrease in HIV-positive patients' satisfaction with hospital care.     

Factors associated with older patients' satisfaction with care in an inner-city emergency department

STUDY OBJECTIVES: We sought to assess older patients' satisfaction with care in the emergency department and to identify factors associated with global satisfaction with care. METHODS: We performed a prospective cohort study of 778 patients 65 years of age and older presenting to an urban academic ED between 1995 and 1996, of whom 79% were black and 63% were female. A baseline survey at presentation to the ED asked for demographic information, medical history, and health-related quality of life information. A follow-up satisfaction survey asked patients to rate the care they received in the ED on a 5-point Likert scale (1=excellent, 5=poor). Overall satisfaction with care, dichotomized into responses of "excellent" versus all others, was the primary dependent variable in our bivariate analyses. RESULTS: Of respondents, 40% rated their ED care as "excellent." Variables significantly correlated with high satisfaction include having the perception of time spent in the ED as not "too long," having the emergency physicians and nurses clearly answer patients' questions, having a relationship of trust with an ED staff member, being told why tests were done, feeling involved in decisions about care as much as they wanted, having pain addressed fully, having a perception of greater health status, and having fewer comorbid conditions at the time of the ED visit. Results may be applicable only to urban academic EDs and may be limited by time elapsed between ED visits and follow-up surveys. CONCLUSION: To improve quality of care for older adults in the ED, physicians should be more attentive to older patients' concerns and questions, recognize and aggressively treat pain, and reduce the patients' perception of a long waiting time.     

Impact of a comprehensive supportive care team on management of hopelessly ill patients with multiple organ failure

We developed a supportive care team for hopelessly ill patients in an urban emergency/trauma hospital. The team includes a clinical nurse specialist and a faculty physician as well as a chaplain and social worker. The supportive care team provides an alternative to intensive care or conventional ward management of hopelessly ill patients and concentrates on the physical and psychosocial comfort needs of patients and their families. We describe our experience with 20 hopelessly ill patients with multiple organ failure vs a similar group treated before the development of the supportive care team. Although there was no difference in mortality (100 percent), the length of stay in the medical ICU for patients with multiple organ failure decreased by 12 days to 6 days. Additionally, there were 50 percent fewer therapeutic interventions provided by the supportive care team vs intensive care or conventional ward treatment of multiple organ failure patients. We describe the methods that the supportive care team uses in an attempt to meet the physical and psychosocial comfort needs of hopelessly ill multiple organ failure patients and their families. This multidisciplinary approach to the care of the hopelessly ill may have applications in other institutions facing the ethical, medical, and administrative challenges raised by these patients.     

Shared care with task delegation to nurses for type 2 diabetes: prospective observational study

BACKGROUND: To study the effects of two different structured shared care interventions, tailored to local needs and resources, in an unselected patient population with type 2 diabetes mellitus. METHODS: A three-year prospective observational study of two interventions and standard care. The interventions involved extensive (A) or limited (B) task delegation from general practitioners to hospital-liaised nurses specialised in diabetes and included a diabetes register, structured recall, facilitated generalist-specialist communication, audit and feedback, patient-specific reminders, and emphasised patient education. The target population consisted of 2660 patients with type 2 diabetes treated in the primary care setting. Patients who were terminally ill or who had been diagnosed with dementia were excluded from the study. RESULTS: The participation rates were high (90%) for patients, and none of the 64 GPs discontinued their participation in the study. Longitudinal analyses showed significant improvements in quality indicators for both intervention groups (process parameters and achieved target values on the individual patient level); in standard care, performance remained stable or deteriorated. Both patients and caregivers appeared satisfied with the project. CONCLUSION: This study shows that structured shared care with task delegation to nurses, targeted at a large unselected general practice population, is feasible and can positively affect the quality of care for patients with type 2 diabetes.