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PubMed2006

Justified paternalism: the nature of beneficence in the care of dementia patients.

The issue of patient autonomy in cases of permanent dementia has recently received a great deal of philosophical attention. Specifically, many have worried about ethical issues surrounding advance directives in which people specify how they shall be treated when they are no longer competent to make their own medical decisions. Ronald Dworkin has been a staunch defender of what he calls precedent autonomy in these cases, believing persons have a right to control, to some degree, how their lives will end, despite the common intuition that the principle of beneficence requires us to improve the experiential quality of patients' lives. Objections have been brought against Dworkin on a number of fronts, including worries about personal identity theory and informed consent. Here, I offer an objection to Dworkin's assessment of the nature of paternalism as it relates to cases of permanent dementia.

Advance Directive Adherence↗
PubMed1993

Ethical issues in the nursing home.

The nursing home is the site of many ethical dilemmas. The majority of these are linked to the high prevalence of dementia and other disorders that affect decisional capacity, thus dictating the need for surrogate decision-making. Even when nursing home residents have utilized advance directives to guide their future care, many issues remain in the decision-making process. This article explores the challenges of medical decision-making for a frail elderly population.

Advance Directive Adherence↗
PubMed1996

Advance directives and withdrawal of dialysis in the United States, Germany, and Japan.

OBJECTIVE: To determine the role of advance directives in decisions to withdraw chronic dialysis in the United States, Germany, and Japan. DESIGN: Survey by questionnaire. PARTICIPANTS: Seventy-two American, 87 German, and 73 Japanese nephrologists. MAIN OUTCOME MEASURES: Each nephrologist's total number of (1) dialysis patients, (2) cases of withdrawal of dialysis, (3) patients with advance directives, and (4) uses of such directives. Nephrologists also stated whether they would continue or stop dialysis in 8 hypothetical cases. RESULTS: American, German, and Japanese nephrologists reported withdrawing dialysis for 5.1%, 1.6%, and 0.7% of their patients in the last year, respectively. Thirty percent of American patients had advance directives, and such directives were used in decision making for 3.2% of all patients. Only 0.3% of German and Japanese patients had advance directives, and such directives were used in decision making for 0.09% of patients. When asked about a hypothetical mentally incompetent patient whose family requests withdrawal of dialysis, American nephrologists were much more likely to stop dialysis in the absence of an advance directive than German or Japanese nephrologists. However, almost all nephrologists from the 3 countries would stop dialysis when a family request to withdraw was supported by a patient advance directive. CONCLUSIONS: There is a high prevalence of advance directives among American dialysis patients, and such directives frequently play a role in decision making. German and Japanese nephrologists appear willing to follow advance directives, but the low prevalence of such directives limits the frequency of their use.

Advance Directive Adherence↗
PubMed1997

Nephrologists' subjective attitudes towards end-of-life issues and the conduct of terminal care.

Decisions which determine the duration and outcome of terminal care should be influenced by patient autonomy. Studies suggest, however, that end-of-life decision-making is more complex than a single principle and that physicians may be responsible for selected aspects of terminal care independent of patient choice. To study how nephrologists' perceptions toward end-of-life issues may affect decision-making, we anonymously surveyed 125 of them. The study employed the straightforward terminology of "hastening death" rather than adopting the ambiguous term "euthanasia" or the narrow term "assisted suicide." Subjective physician profiles demonstrated that nephrologists who are less comfortable with dying patients were significantly less likely to report that they omitted life-prolonging measures (p = 0.02) and more likely to report that they would not initiate measures in order to hasten death even were it legal (p = 0.04). Ninety-eight percent of nephrologists reported omissions in terminal care with patient knowledge and 80% without patient knowledge. In contrast, forty-three percent of the nephrologists said that were it to become legal to initiate measures in order to hasten death, they would "never" do so. The ethical framework utilized for discontinuation of dialysis decisions incorporated medical benefit (cancer as criterion, 48%; multisystem complications, 84%; dementia 79%) and quality of life criteria. Twenty-five percent of nephrologists admitted difficulty with advance directives if the directives clashed with heir beliefs. ESRD end-of-life decision-making in the USA may be altered by the subjective characteristics of nephrologists. In particular, nephrologists' level of discomfort with patient mortality is linked with their reported management of terminal patients.

Adult↗
PubMed2005

Would they follow what has been laid down? Cancer patients' and healthy controls' views on adherence to advance directives compared to medical staff.

UNLABELLED: Advance directives are propagated as instruments to maintain patients' autonomy in case they can no longer decide for themselves. It has been never been examined whether patients' and healthy persons themselves are inclined to adhere to these documents. Patients' and healthy persons' views on whether instructions laid down in advance directives should be followed because that is (or is not) "the right thing to do", not because one is legally obliged to do so, were studied and compared with that of medical staff. METHOD: Vignette study presenting five cases. Cancer patients, healthy persons, nursing staff and physicians (n = 100 in each group) were interviewed. An adherence score was calculated (maximum value 5). The adherence score is found to be low in all groups, yet lowest in patients (1.55; standard deviation 1.13) and healthy controls (1.60; 1.37). The scores are significantly different between nursing staff on the one hand and patients and healthy controls on the other (p < 0.005 and p < 0.05, respectively), and between doctors and patients (p < 0.05). Interviewees who want these documents to be followed tend to live alone and to have already written an advance directive. CONCLUSIONS: Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff do. Only a minority tends to adhere more to advance directives. To improve decision-making at the end of life when patients are no longer able to decide for themselves alternative concepts, such as advanced care planning, should be considered.

Adult↗
PubMed2006

Commentary: the climate for physician adherence to psychiatric advance directives.

Factors that may be significant in rationalizing physician overrides of psychiatric advance directives (PADs) are not only features of individual clinical scenarios, but also are artifacts of the faltering mental health system being navigated by both provider and patient. This system, frequently viewed as hostile to consumer choice and increasingly focused on reacting to recurrent crises, is not predisposed to accepting proactive, person-centered measures such as PADs. In fact, PADs may hold great promise in improving clinical outcomes and even reducing system costs. But to realize the full potentials of PADs requires that providers understand their roles in challenging or perpetuating problems in the larger mental health system.

Advance Directives↗