Clozapine (Clozaril) is a new, powerful, costly anti-psychotic medicine, with a possible serious side effect (agranulocytosis) that entails weekly blood monitoring. In a three hundred bed state mental hospital that is allotted thirty clozapine slots (high costs effectively rationing this drug), a woman with schizophrenia responds minimally to this medication. Her attending physician wishes to withdraw the medicine and give it to another patient with schizophrenia on the ward who might have a better response. The woman's family threatens to make (...) a public outcry. Both the attending physician and the family ask the HEC for a consult. (shrink)

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that the protracted clinical course of (...) dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

Advance directives for withholding life-saving treatment are controversial for dementia patients whose previously expressed wishes conflict with their currently expressed desires. To illustrate this ethical dilemma, McMahan conceives a hypothetical case in which an intellectually proud creative woman signs an advance directive stipulating her refusal to receive life-saving treatment if she contracts a fatal condition with dementia. However, when she develops dementia and forgets this advance directive, she contracts pneumonia and now expresses a desire to live. In response to such (...) dilemmas, scholars like Norman Cantor have defended the moral authority of advance directives by giving credence to one’s prior competent wishes over one’s current incompetent preferences. I argue that their arguments, which are rooted in the principle of respect for autonomy, operate under ableist assumptions about incompetent persons and exclude other important features of respect. I propose an ethics of care model as an alternative moral approach that reconceptualises respect as a matter of caring about people’s contemporaneous interests, even if they are not competently conceived. It fosters the virtues of care by encouraging healthcare providers to recognise dementia patients as legitimate narrative agents capable of authoring their own evolving life story. I argue that the ethics of care model not only provides an ethical defence of the creative woman’s current incompetent desire to live despite her advance directive, but also vindicates our moral intuitions about what it means to demonstrate respect to dementia patients. (shrink)

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)

Should advance directives (ADs) such as living wills be employed to direct the care of the severely demented? In considering this question, I focus primarily on the claims of Rebecca Dresser who objects in principle to the use of ADs in this context. Dresser has persuasively argued that ADs are both theoretically incoherent and ethically dangerous. She proceeds to advocate a Best Interest Standard as the best way for deciding when and how the demented ought to be treated. I put (...) forth a compromise position: both ADs and the Best Interest Standard have roles to play in guiding the care of the severely demented. (shrink)

As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives of refusing life-saving treatments or requesting euthanasia of persons with dementia who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs’ current wishes based on minimal autonomy represented (...) by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs’ current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone. (shrink)

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...) decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

Some of the concerns that have been raised in connection to the use of advance directives are of the epistemic variety. Such concerns highlight the possibility that adhering to an advance directive may conflict with what the author of the directive actually wants at the time of treatment. However, at least one objection to the employment of advance directives is metaphysical in nature. The objection to be discussed here, first formulated by Rebecca Dresser and labeled by Allen Buchanan as the (...) slavery argument and David DeGrazia the someone else problem, aims to undermine the legitimacy of certain uses of advance directives by concluding that such uses rest upon an incorrect assumption about the identity over time of those ostensibly governed by the directives. There have been numerous attempts to respond to this objection. This paper aims to assess two strategies that have been pursued to cope with the problem. (shrink)

Ever since the 1960s, when medical science became capable of prolonging the dying process beyond bounds that many patients would find acceptable, people have sought “death with dignity,” or “a natural death,” or “a good death.” Once debilitation from a fatal affliction has reached a personally intolerable point, dying patients have sought to control the manner and timing of death via diverse techniques. Some sought the disconnection of life-sustaining medical interventions, such as respirators and dialysis machines. Beyond freedom from unwelcome (...) interventions, some patients intent on avoiding suffering sought access to pain relief medication—even in dosages posing some risk of hastening death. Other dying patients sought access to deep sedation, even knowing that they would never emerge from the resultant unconsciousness. Still other patients voluntarily refused to eat or drink or to accept artificial nutrition and hydration. (shrink)

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. (shrink)

Heathcare spending, which was almost 13% of the gross national product last year, is estimated to jump to 14% in 1992. For the first time, hosital expenditures are projected to exceed $300 biilion, representing over 38% of the nation's total healthcare bill. In an effort to reduce federal and state budget deficits and to stimulate institutional cost containment, Medicare and Medicaid officials are becoming even more parsimonious in negotitation reimbursement levels.