Autonomy, liberalism and advance care planning.
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The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (+info)
The value of taking an 'ethics history'.
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OBJECTIVES: To study the value of taking an ethics history as a means of assessing patients' preferences for decision making and for their relatives' involvement. DESIGN: Questionnaire administered by six junior doctors to 56 mentally competent patients, admitted into general and geriatric medical beds. SETTING: A large district general hospital in the United Kingdom. MAIN MEASURES: To establish whether patients were adequately informed about their illness and whether they minded the information being communicated to their relatives. To establish their preference regarding truthful disclosure and participation in decision making with risk attached. To establish whether they wished to be involved in CPR decision making, and if not, who should make the decision. To establish whether they knew of living wills and whether they had any advance directives. RESULTS: Twenty-four (43%) were inadequately informed of their illness. Forty-six (82%) said they would want to know were something serious to be found. Twenty-eight (50%) wanted to make their own decision if requiring risky treatment and 11 (20%) wanted family members involved. Thirty-one (55%) wanted to make a cardiopulmonary resuscitation (CPR) decision and five of these decisions differed from those made by the doctors. Twenty-five (45%) preferred the doctors to decide. Eleven (20%) of the patients had heard of living wills but only one had executed such a will. Seven (13%) of the patients wished to provide advance directives. Three (5%) did not find the history taking helpful but none were discomforted. CONCLUSION: Taking an ethics history is a simple means of obtaining useful information about patients' preferences. (+info)
Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients.
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BACKGROUND: There has been little research on the potential value of palliative care for dialysis patients. In this pilot study, we sought (i) to identify symptom burden, health-related quality of life (HRQoL) and advance directives in extremely ill haemodialysis patients to determine their suitability for palliative care and (ii) to determine the acceptability of palliative care to patients and nephrologists. METHODS: Nineteen haemodialysis patients with modified Charlson co-morbidity scores of > or =8 were recruited. Each completed surveys to assess symptom burden, HRQoL and prior advance care planning. Palliative care specialists then visited patients twice and generated recommendations. Patients again completed the surveys, and dialysis charts were reviewed to assess nephrologists' (i) compliance with recommendations and (ii) documentation of symptoms reported by patients on the symptom assessment survey. Patients and nephrologists then completed surveys assessing their satisfaction with palliative care. RESULTS: Patients reported 10.5 symptoms, 40% of which were noted by nephrologists in patients' charts. HRQoL was significantly impaired. Thirty-two percent of patients had living wills. No differences were observed in symptoms, HRQoL or number of patients establishing advance directives as a result of the intervention. Sixty-eight percent of patients and 76% of nephrologists rated the intervention worthwhile. CONCLUSIONS: Extremely ill dialysis patients have marked symptom burden, considerably impaired HRQoL and frequently lack advance directives, making them appropriate candidates for palliative care. Patients and nephrologists perceive palliative care favourably despite its lack of effect in this study. A more sustained palliative care intervention with a larger sample size should be attempted to determine its effect on the care of this population. (+info)
Advance care planning in nursing homes: correlates of capacity and possession of advance directives.
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PURPOSE: The identification of nursing home residents who can continue to participate in advance care planning about end-of-life care is a critical clinical and bioethical issue. This study uses high quality observational research to identify correlates of advance care planning in nursing homes, including objective measurement of capacity. DESIGN AND METHODS: The authors used cross-sectional, cohort study between 1997 and 1999. Seventy-eight residents (M age = 83.97, SD = 8.2) and their proxies (M age = 59.23, SD = 11.77) were included across five nursing homes. The authors obtained data via chart review, proxy interviews, resident assessments, survey completion by certified nursing assistants, and direct observation of residents' daily behaviors. RESULTS: Capacity assessments revealed that most residents could state a simple treatment preference (82.4%), but a sizable number did not retain capacity to understand treatment alternatives or appreciate the consequences of their choice. Global cognitive ability (Mini-Mental State Examination score) was related to understanding and appreciation. When the authors removed the effects of global cognitive ability, understanding and appreciation were related to time spent by residents in verbal interaction with others. Residents were more likely to possess advance directives when proxies possessed advance directives, proxies were less religious, and residents were socially engaged. IMPLICATIONS: Assessment of proxy beliefs and direct determination of residents' decisional capacity and social engagement may help nursing home staff identify families who may participate in advance planning for end-of-life medical care. Measures of global cognitive ability offer limited information about resident capacity for decision making. Decisional capacity assessments should enhance the verbal ability of individuals with dementia by reducing reliance on memory in the assessment process. Interventions to engage residents and families in structured discussions for end-of-life planning are needed. (+info)
Chronic obstructive pulmonary disease: the last year of life.
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Nearly one quarter million Americans die with or of advanced chronic obstructive pulmonary disease (COPD) each year. Many patients die after a prolonged functional decline that is accompanied by much suffering. Though difficult prognostically and emotionally, anticipation of death opens the door to planning and preparing for terminal care. Epidemiologists have begun to identify characteristics of COPD patients who are most likely to die within 6-12 months, including severe, irreversible airflow obstruction, severely impaired and declining exercise capacity and performance status, older age, concomitant cardiovascular or other co-morbid disease, and a history of recent hospitalizations for acute care. Clinicians are encouraged to raise the difficult subject of planning for death when many of these characteristics apply. Patients with far-advanced disease are often receptive to the recommendation of a dual agenda: "Hope for and expect the best, and prepare for the worst." Medical advance planning is best pursued in an out-patient office during a prescheduled, 3-way conversation between patient, health care proxy, and physician. An advance directive can be written after the meeting to summarize the conversation. Clinicians should consider recommending hospice care when a COPD patient is at high risk of respiratory failure from the next chest infection and in need of frequent or specialized home care. Preparation for death should include a realistic appraisal of the prospects for dying peacefully at home and a contingency plan for terminal hospitalization, should the need arise. (+info)
Patient-physician communication about end-of-life care for patients with severe COPD.
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Since patients with chronic obstructive pulmonary disease (COPD) infrequently discuss treatment preferences about end-of-life care with physicians, the goal of the present study was to identify which specific areas of communication about end-of-life care occur between patients with severe COPD and their physicians, and how patients rate the quality of this communication. A total of 115 patients with oxygen-dependent COPD, identified in pulmonary clinics in three hospitals and through an oxygen delivery company, were enrolled in this study. A 17-item quality of communication questionnaire (QOC) was administered to patients, along with other measures, including satisfaction with care. The patients reported that most physicians do not discuss how long the patients have to live, what dying might be like or patients' spirituality. Patients rated physicians highly at listening and answering questions. Areas patients rated relatively low included discussing prognosis, what dying might be like and spirituality/religion. Patients' assessments of physicians' overall communication and communication about treatment correlated well with the QOC. Patients' overall satisfaction with care also correlated significantly with the QOC. In conclusion, this study identifies areas of communication that physicians do not address and areas that patients rate poorly, including talking about prognosis, dying and spirituality. These areas may provide targets for interventions to improve communication about end-of-life care for patients with chronic obstructive pulmonary disease. Future studies should determine the responsiveness of these items to interventions, and the effect such interventions have on patient satisfaction and quality of care. (+info)
Relatives' knowledge of decision making in intensive care.
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BACKGROUND/AIM: The law on consent has changed in Scotland with the introduction of the Adults with Incapacity (Scotland) Act 2000. This Act introduces the concept of proxy consent in Scotland. Many patients in intensive care are unable to participate in the decision making process because of their illness and its treatment. It is normal practice to provide relatives with information on the patient's condition, treatment, and prognosis as a substitute for discussion directly with the patient. The relatives of intensive care patients appeared to believe that they already had the right to consent on behalf of an incapacitated adult. The authors' aim was to assess the level of knowledge among relatives of intensive care patients of both the old and new law using a structured questionnaire. METHODS: The next of kin of 100 consecutive patients completed a structured questionnaire. Each participant had the questions read to them and their answers recorded. Patients were not involved in the study. RESULTS: Few (10%) were aware of the changes. Most (88%) thought that they previously could give consent on behalf of an incapacitated adult. Only 13% have ever discussed the preferences for life sustaining treatment with the patient but 84% felt that they could accurately represent the patient's wishes. CONCLUSIONS: There appeared to be a lack of public awareness of the impending changes. The effectiveness of the Act at improving the care of the mentally incapacitated adult will depend largely on how successful it is at encouraging communication and decision making in advance of incapacity occurring. (+info)
Advance care planning and end of life decision making.
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BACKGROUND: Aging populations with greater rates of cognitive decline demand increased attention to the issues of end of life decision making and advance care planning (ACP). Legislatures have passed statutes that recognise the necessity for both substitute decision making and the declaration in advance of wishes relating to health care. OBJECTIVE: This article discusses ACP and the role of the general practitioner. DISCUSSION: Advance care planning provides patients, relatives and doctors with greater confidence about the future. There is good evidence that patients desire to discuss end of life care, and GPs are in a good position to engage their patients in considering the issues. They have a responsibility to confirm the decision making capacity of patients who write advance health directive documents, to inform and educate their patients about future health care, and to keep the ACP conversation going. (+info)