A primary goal of clinical practice is to respect patient autonomy. To promote this goal for patients who have lost the ability to make their own decisions, commentators recommend that surrogates make their treatment decisions based on the substituted judgment standard. This standard is commonly interpreted as directing surrogates to make the decision the patient would have made in the circumstances, if the patient were competent. However, recent commentators have argued that this approach—attempting to make the decision the patient would (...) have made if competent—is theoretically problematic, practically infeasible, and ignores the interests of the patient9s family and loved ones. These commentators conclude that the substituted judgment standard should be revised significantly, or abandoned altogether. While this response would avoid the cited problems, it also would require substantial changes to clinical practice and would raise significant problems of its own. The present paper thus considers the possibility that the criticisms do not point to problems with the substituted judgment standard itself; instead, they point to problems with the way it is most commonly interpreted. This analysis suggests that the substituted judgment standard need not be dramatically revised or abandoned. Instead, it should be interpreted in a way that effectively promotes respect for the autonomy of incompetent patients. The ‘endorsed life’ interpretation described here helps clinicians and surrogates to achieve this important goal. To clarify this approach, we explain how it differs from three other recently proposed alternatives to the standard interpretation of the substituted judgment standard. (shrink)

In W v M and Others (Re M) the Court of Protection considered whether withdrawal of artificial nutrition and hydration was in the best interests of a person in minimally conscious state. The Mental Capacity Act 2005 states that in determining best interests the decision-maker must consider, so far as is reasonably ascertainable, the patient's wishes, feelings, beliefs and values. Baker J. indicated that a high level of specificity is required in order to attribute significant weight to these factors. It (...) is preservation of life which carries substantial weight in the best interests' balance sheet. Could the (prior) values of a patient ever meet the probative standard necessary to offset the weight accorded to preservation of life? Rather than referencing the patient's values to specific circumstances and treatments they could be more effectively considered as part of the patient narrative, how the patient would want her life story to continue/cease. (shrink)

On a traditional interpretation of the substituted judgement standard a person who makes treatment decisions on behalf of a non-competent patient ought to decide as the patient would have decided had she been competent. I propose an alternative interpretation of SJS in which the surrogate is required to infer what the patient actually thought about these end-of-life decisions. In clarifying SJS it is also important to differentiate the patient's consent and preference. If SJS is part of an autonomy ideal of (...) the sort found in Kantian ethics, consent seems more important than preference. From a utilitarian perspective a preference-based reading of SJS seems natural. I argue that the justification of SJS within a utilitarian framework will boil down to the question whether a non-competent patient can be said to have any surviving preferences. If we give a virtue-ethical justification of SJS the relative importance of consent and preferences depends on which virtue one stresses-respect or care. I argue that SJS might be an independent normative method for extending the patient's autonomy, both from a Kantian and a virtue ethical perspective. (shrink)

The ethics of involving persons with cognitive impairments and/or mental illness in research continues to gain academic and public attention. Concerns about the ability of such persons to provide ethically and legally valid consent and about the appropriateness of their research involvement in certain categories of studies have resulted in publication of guidelines, position papers, standards, and court decisions. These analyses address not only when and from whom informed consent may be obtained but also under what conditions it is ethically (...) permissible to involve persons in research who are too decisionally impaired to provide their own consent.It is an advance in research ethics that there is heightened appreciation of the need for greater protections for, and possibly research participation limitations on, persons unable to give their own consent. In our zeal to protect potentially vulnerable subjects, however, we must craft new protections carefully. Prudence is required in shaping and implementing any new protections. (shrink)

The ethics of involving persons with cognitive impairments and/or mental illness in research continues to gain academic and public attention. Concerns about the ability of such persons to provide ethically and legally valid consent and about the appropriateness of their research involvement in certain categories of studies have resulted in publication of guidelines, position papers, standards, and court decisions. These analyses address not only when and from whom informed consent may be obtained but also under what conditions it is ethically (...) permissible to involve persons in research who are too decisionally impaired to provide their own consent.It is an advance in research ethics that there is heightened appreciation of the need for greater protections for, and possibly research participation limitations on, persons unable to give their own consent. In our zeal to protect potentially vulnerable subjects, however, we must craft new protections carefully. Prudence is required in shaping and implementing any new protections. (shrink)

The laws and ethical guidelines governing decision making for incompetent patients evolved from controversies in which family members refused life-sustaining interventions. These cases led to a consensus that advance directives to limit interventions should be respected and that a surrogate designated by the patient or specified by statute could refuse interventions, even when other relatives disagreed. Surrogate decision-making statutes and ethical principles about respect for delegated autonomy promote an active role for family members or other surrogates in medical decisions for (...) incompetent patients. Inviting surrogates to participate actively in medical decisions recognizes the importance of the patient's personal community and assures that decisions will reflect the patient's own preferences and values.The standard approach to decisions for incompetent adults gives advance directives priority over a surrogate's substituted judgment, which in turn has priority over assessments of the patient's best interest. A patient may express advance directives by appointing a proxy, stating specific preferences, or articulating general values. We use case examples to illustrate the limitations of all three types of advance directives. (shrink)

The laws and ethical guidelines governing decision making for incompetent patients evolved from controversies in which family members refused life-sustaining interventions. These cases led to a consensus that advance directives to limit interventions should be respected and that a surrogate designated by the patient or specified by statute could refuse interventions, even when other relatives disagreed. Surrogate decision-making statutes and ethical principles about respect for delegated autonomy promote an active role for family members or other surrogates in medical decisions for (...) incompetent patients. Inviting surrogates to participate actively in medical decisions recognizes the importance of the patient's personal community and assures that decisions will reflect the patient's own preferences and values.The standard approach to decisions for incompetent adults gives advance directives priority over a surrogate's substituted judgment, which in turn has priority over assessments of the patient's best interest. A patient may express advance directives by appointing a proxy, stating specific preferences, or articulating general values. We use case examples to illustrate the limitations of all three types of advance directives. (shrink)