ABSTRACT It is accepted that treatment of previously competent, now incompetent patients can be limited if that is what the patient would desire, if she were now competent. Expressed past preferences or an advance directive are often taken to constitute sufficient evidence of what a patient would now desire. I distinguish between desires and rational desires. I argue that for a desire to be an expression of a person's autonomy, it must be or satisfy that person's rational desires. A person (...) rationally desires a course of action if that person desires it while being in possession of all available relevant facts, without committing relevant error of logic, and “vividly imagining” what its consequences would be like for her. I argue that some competent, expressed desires obstruct autonomy. I show that several psychological mechanisms operate to prevent a person rationally evaluating what future life in a disabled state would be like. Rational evaluation is difficult. However, treatment limitation, if it is to respect autonomy, must be in accord with a patient's rational desires, and not merely her expressed desires. I illustrate the implications of these arguments for the use of advance directives and for the treatment of competent patients. (shrink)

Im Rahmen des Modellvorhabens „Patienten als Partner—Tumorpatienten und ihr Mitwirken bei medizinischen Entscheidungen“ wurden zwischen März 2002 und August 2003 272 palliativ behandelte Tumorpatienten nach ihrer Einstellung zur Patientenverfügung und zur gewünschten Beteiligung an medizinischen Entscheidungen befragt. Von den Befragten kannten 30% Patientenverfügungen nicht, darunter signifikant mehr Befragte mit formal niedrigerem Bildungsabschluss. Es hatten bereits 11% eine Patientenverfügung abgeschlossen, 22% wollten wahrscheinlich eine abschließen, und 30% wollten keine abschließen. Es fand sich ein statistisch signifikanter Zusammenhang zwischen dem Abschluss einer Patientenverfügung (...) und dem Wunsch nach mehr eigener Entscheidungsverantwortung. Die Einstellung zur Patientenverfügung und der Wunsch nach partizipativer Entscheidungsfindung stehen in keinem statistisch signifikanten Zusammenhang. Patienten mit schriftlichen Vorausverfügungen haben einen erhöhten Kommunikations- und Rückkopplungsbedarf, auf den Ärzte sensibel eingehen sollten. Bei der Information über Patientenverfügungen sollten Menschen mit niedrigerem Bildungsstand mehr als bisher berücksichtigt werden. (shrink)

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. (shrink)

In September 1998 the Bundesrztekammer, i.e., the German Medical Association, published new principles concerning terminal medical care. Even before publication, a draft of these principles was very controversial, and prompted intense public debate in the mass media. Despite some of the critics' suspicions that the principles prepared the way for liberalization of active euthanasia, euthanasia is unequivocally rejected in the principles. Physician-assisted suicide is considered to violate professional medical rules. In leaving aside some of the notions customarily used in the (...) euthanasia debate, e.g., passive euthanasia, the principles emphasize the obligation of physicians to offer and the right of patients to receive palliative care. The principles explicitly list modalities of basic treatment that are indispensable in all cases, such as the obligation to satisfy hunger and thirst. This statement is meant to resolve the dispute on nutrition and hydration at the end of life, as it shifts the focus of care from maintaining physiological parameters to satisfying subjective needs. For patients in a persistent vegetative state, artificial feeding is held to be obligatory. Yet, the principles make reference to recent German jurisdiction which permit the stopping of artificial feeding if it is in accordance with the patient's presumed will. Additionally, the wording concerning this issue is found to remain unclear. Patients' autonomy is strengthened by explicitly welcoming advance directives as a means to ascertain patients' wills. The principles mark some changes compared to earlier documents. They deserve careful analysis and should be considered in the international debate on issues concerning the end of life. (shrink)

In pursuit of the dream that patients' exercise of autonomy could extend beyond their span of competence, living wills have passed from controversy to conventional wisdom, to widely promoted policy. But the policy has not produced results, and should be abandoned.

ABSTRACT This paper critically examines the liberal model of decision making for the terminally ill and contrasts it with the familial model that can be found in some Asian cultures. The contrast between the two models shows that the liberal model is excessively patient‐centred, and misconceives and marginalises the role of the family in the decision making process. The paper argues that the familial model is correct in conceiving the last journey of one's life as a sharing process rather than (...) a process of exercising one's prior or counterfactual choice, and concludes by suggesting a policy framework for the practice of familialism that can answer the liberal challenge that familialism cannot safeguard the patient from abuse and neglect. (shrink)

Objectives: After years of public discussion too little is still known about willingness to accept the idea of writing an advance directive among various groups of people in EU countries. We investigated knowledge about and willingness to accept such a directive in cancer patients, healthy controls, physicians, and nursing staff in Germany.Methods: Cancer patients, healthy controls, nursing staff, and physicians were surveyed by means of a structured questionnaire.Results: Only 18% and 19% of the patients and healthy controls respectively, and 10% (...) of the medical staff had written an advance directive. However, 50–81% of those surveyed indicated that they wished to write one. This intention was associated with deteriorating health . Only 29% of the healthy controls and 43% of the patients knew about the possibility of appointing a health care proxy. A majority in all groups believed that advance directives may influence the course of treatment , yet half of those surveyed in all groups fear that patients could be pressurised into writing an advance directive, and 38–65% thought that relatives could abuse such documents.Conclusions: Only a minority of the participants had written an advance directive and knew about the possibility of authorising a health care proxy. Deteriorating health was associated with increasing willingness to make a directive. Despite a majority belief that advance directives may influence treatment at the end of life, other factors limit their employment, such as fear of abuse. (shrink)

In the last decade the use of advance directives or living wills has become increasingly common. This paper is concerned with those advance directives in which the user opts for withdrawal of active treatment in a future situation where he or she is incompetent to consent to conservative management but where that incompetence is potentially reversible. This type of directive assumes that the individual is able accurately to determine the type of treatment he or she would have adopted had he (...) or she been competent in this future scenario. The paper argues that this assumption is flawed and provides theoretical and empirical evidence for this. If the assumption is false, and those taking out advance directives do not realise this, then the ethical bases for the use of these advance directives-the maximisation of the individual's autonomy and minimisation of harm-are undermined. The paper concludes that this form of advance directive should be abolished. (shrink)

Advance directives such as living wills are attractive in that they give us a sense of control over our futures. But they also tend to obscure conflicts between a patient's competent wishes and later, incompetent interests. They allow caregivers to avoid evaluating quality of life in assessing the best interests of incompetent patients.

ZusammenfassungIm Rahmen des Modellvorhabens „Patienten als Partner—Tumorpatienten und ihr Mitwirken bei medizinischen Entscheidungen“ wurden zwischen März 2002 und August 2003 272 palliativ behandelte Tumorpatienten nach ihrer Einstellung zur Patientenverfügung und zur gewünschten Beteiligung an medizinischen Entscheidungen befragt. Von den Befragten kannten 30% Patientenverfügungen nicht, darunter signifikant mehr Befragte mit formal niedrigerem Bildungsabschluss. Es hatten bereits 11% eine Patientenverfügung abgeschlossen, 22% wollten wahrscheinlich eine abschließen, und 30% wollten keine abschließen. Es fand sich ein statistisch signifikanter Zusammenhang zwischen dem Abschluss einer Patientenverfügung (...) und dem Wunsch nach mehr eigener Entscheidungsverantwortung. Die Einstellung zur Patientenverfügung und der Wunsch nach partizipativer Entscheidungsfindung stehen in keinem statistisch signifikanten Zusammenhang. Patienten mit schriftlichen Vorausverfügungen haben einen erhöhten Kommunikations- und Rückkopplungsbedarf, auf den Ärzte sensibel eingehen sollten. Bei der Information über Patientenverfügungen sollten Menschen mit niedrigerem Bildungsstand mehr als bisher berücksichtigt werden. (shrink)