Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy (...) and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Although advance directives are widely believed to be a key way to safeguard the autonomy of incompetent medical patients, significant questions exist about their moral authority. The main philosophical concern involves cases in which an incompetent patient no longer possesses the desires on which her advance directive was based. The question is, does that entail that prior expressions of medical choices are no longer morally binding? I believe that the answer is “yes.” I argue that a patient’s autonomy is not (...) respected by honoring the desires she used to have but no longer does. I also consider and reject the view that honoring an advance directive that reflects the patient’s previous values must be in that patient’s best interests. If that is correct, then advance directives in the kind of case at issue are not morally binding. (shrink)

With the passage by virtually every state legislature of healthcare proxy laws, the medical profession increasingly can expect to rely on the participation of surrogates in making decisions on behalf of incompetent patients. Several concerns about the legitimacy of proxy decision making have been discussed in the ethical and general medical literature: the lack of concordance between the views of patients and their surrogates have been documented on multiple occasions, and cases of abuse by proxies or potential conflict of interest (...) have been reported. Another dilemma that deserves discussion arises when proxies demand withdrawal of treatment that physicians and nurses regard as essential to the wellbeing of the patient. The following case highlights this dilemma. (shrink)

This discussion aims to give a normative theoretical basis for a “best judgment” model of surrogate decision making rooted in a regulative ideal of love. Currently, there are two basic models of surrogate decision making for incompetent patients: the “substituted judgment” model and the “best interests” model. The former draws on the value of autonomy and responds with respect; the latter draws on the value of welfare and responds with beneficence. It can be difficult to determine which of these two (...) models is more appropriate for a given patient, and both approaches may seem inadequate for a surrogate who loves the patient. The proposed “best judgment” model effectively draws on the values incorporated in each of the traditional standards, but does so because these values are important to someone who loves a patient, since love responds to the patient as the specific person she is. (shrink)

Aid‐in‐dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision‐making capacity would be invalid. However, many people are more concerned about avoiding living into (...) severe dementia for years—a time when they will lack decision‐making capacity—than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life.Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: “Every day I lose bits of myself, and it’s obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full‐time care.”A major problem with Bennett’s solution, however, is that the individual is likely thereby to be giving up some “good time.” A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life‐sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves. (shrink)

A persistent question in discussions of the ethics of advance directives for euthanasia is whether patients who go through deep psychological changes retain their identity. Rather than seek an account of identity that answers this question, I argue that responsible policy should directly address indeterminacy about identity directly. Three sorts of indeterminacy are distinguished. Two of these—epistemic indeterminacy and metaphysical indeterminacy—should be addressed in laws/policies regarding advance directives for euthanasia.

As medical technology becomes more sophisticate the ability to manipulate nature and manage disease forces the dilemma of when can becomes ought. Indeed, most bioethical discourse is framed in terms of balancing the values and interests and the benefits and burdens that inform principled decisions about how, when, and whether interventions should occur. Yet, despite advances in science and technology, one caregiver mandate remains as constant and compelling as it was for the earliest shaman—the relief of pain. Even when cure (...) is impossible, the physician's duty of care includes palliation. Moreover, the centrality of this obligation is both unquestioned and universal, transcending time and cultural boundaries.Although universally acknowledged, pain is a complex phenomenon for both the patient and the caregiver, influenced as much by personal values and cultural traditions as by physiological injury and disease. (shrink)

The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for planning (...) medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient’s changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer’s disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients’ values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact. I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual’s directive would be an unacceptable form of discrimination towards those patients. (shrink)

Refusal of lifesaving treatment, and such refusal by advance directive, are widely recognized as ethically and legally permissible. Voluntarily stopping eating and drinking is not. Ethically and legally, how does VSED compare with these two more established ways for patients to control the end of life? Is it more questionable because with VSED the patient intends to cause her death, or because those who assist it with palliative care could be assisting a suicide?In fact the ethical and legal basis for (...) VSED is virtually as strong as for refusing lifesaving treatment and less problematic than the basis for refusing treatment by advance directive. VSED should take its proper place among the accepted, permissible ways by which people can control the time and manner of death. (shrink)

Volume 20, Issue 8, August 2020, Page 80-82.

Physician-assisted suicide laws in Oregon and Washington require the person's current competency and a prognosis of terminal illness. In The Netherlands voluntariness and unbearable suffering are required for euthanasia. Many people are more concerned about the loss of autonomy and independence in years of severe dementia than about pain and suffering in their last months. To address this concern, people could write advance directives for physician-assisted death in dementia. Should such directives be implemented even though, at the time, the person (...) is no longer competent and would not be either terminally ill or suffering unbearably? We argue that in many cases they should be, and that a sliding scale which considers both autonomy and the capacity for enjoyment provides the best justification for determining when: when written by a previously well-informed and competent person, such a directive gains in authority as the later person's capacities to generate new critical interests and to enjoy life decrease. Such an extension of legalized death assistance is grounded in the same central value of voluntariness that undergirds the current more limited legalization. (shrink)

Almost all jurisdictions where physician-assisted death is legal require that the requesting individual be competent to make medical decisions at time of assistance. The requirement of contemporary competence is intended to ensure that PAD is limited to people who really want to die and have the cognitive ability to make a final choice of such enormous import. Along with terminal illness, defined as prognosis of death within six months, contemporary competence is regarded as an important safeguard against mistake and abuse, (...) arguably the strongest objections to legalizing PAD.The insistence on contemporary competence is problematic. It means that someone who has dementia is ruled out as a candidate for PAD, even if she is terminally ill and suffering terrible and unrelievable pain. It also rules out individuals with strong and unwavering desires not to end their life in dementia. (shrink)

Competent patients have considerable legal authority to control life‐and‐death care. They may refuse medical life support, including medically delivered food and fluids. Even when they are not in need of any life‐saving care, they may expedite death by refusing food and water by mouth—voluntarily stopping eating and drinking, or VSED. Neither right is limited to terminal illness. In addition, in four U.S. states, competent patients, if terminally ill, may obtain lethal drugs for aid‐in‐dying.For people who have dementia and are no (...) longer competent, however, control over the end of life is much less extensive. They may have written a clear advance directive for refusing life‐saving care in specified circumstances yet subsequently find themselves living for years in severe dementia with no need for life‐saving care that could be refused. Chronic progressive dementia is not itself life threatening until its very final stage. Even in jurisdictions that permit active aid‐in‐dying, individuals with advanced dementia are not eligible; they lack the required current competence, and they are seldom deemed terminally ill. As for the right to VSED, its very name—voluntarily stopping eating and drinking—is seen as excluding noncompetent persons.One option for ensuring that one does not live years in severe dementia is to use advance directives to withhold food and water by mouth. The driving element behind VSED is that forcing people to ingest food is as objectionable an intrusion on bodily integrity, privacy, and liberty as imposing unwanted medical treatment. Thus, if incompetent people do not lose their rights to refuse life‐saving treatment, and if people when competent have just as strong a right to VSED as they do to refuse life‐saving treatment, then people do not lose their right to VSED when incompetent either. They only have to exercise it by AD. (shrink)

How should the hospital’s ethics consultation service respond to this request from the Emergency Department for advice about “how to proceed” in caring for ED patient Benjamin? In order to off...

There are at least three related issues that need to be resolved in this case: Who should be the patient’s medical decision-maker?, Should the patient be treated and possibly admitted?, and...

BackgroundThe terminal illness of late-stage Alzheimer’s and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die—which many advance directives cannot provide. Proxies/agents’ substituted judgment may not be concordant with patients’ requests. While advance directives can be patients’ last resort (...) to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive’s requests to cease assisted feeding.AimThis article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters’ selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from “dementia-specific” directives or supplements that exemplify each flaw—mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests “Cease assisted feeding” but the incapacitated patient apparently expresses the desire to “Continue assisted feeding.” Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities’ additional clinical criteria as a prerequisite to honor the requests in patients directives.ConclusionThis critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients’ wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care? (shrink)

Advance directives for psychiatric care are the subject of debate in a number of Western societies. By using psychiatric advance directives , it would be possible for mentally ill persons who are competent and with their disease in remission, and who want timely intervention in case of future mental crisis, to give prior authorisation to treatment at a later time when they are incompetent, have become non-compliant, and are refusing care. Thus the devastating consequences of recurrent psychosis could be minimised.Ulysses (...) contracts raise a number of ethical questions. In this article the central issues of concern and debate are discussed from a narrative perspective. Ulysses contracts are viewed as elements of an ongoing narrative in which patient and doctor try to make sense of and get a hold on the recurrent crises inherent in the patient's psychiatric condition. (shrink)

The principle of autonomy is widely recognized to be of utmost importance in bioethics; however, we argue that this principle is often misapplied when one fails to distinguish two different contexts in medicine. When a particular patient is offered treatment options, she has the ultimate say in whether to proceed with any of those treatments. However, when deciding whether a particular intervention should be regarded as a form of medical treatment in the first place, it is the medical community who (...) has the ultimate say. Some argue that particular interventions should be allowed by virtue of the fact that they are autonomously requested. But making such an argument fails to distinguish between these two contexts and misapplies the principle of autonomy, ultimately having the potential to instigate problematic changes in the practice of medicine. (shrink)

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)

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)

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)

The legalisation of physician assisted suicide in Oregon and physician assisted death in the Netherlands has revitalised the debate over whether and under what conditions individuals should be able to determine the time and manner of their deaths, and whether they should be able to enlist the help of physicians in doing so. Although the change in the law is both dramatic and recent, the basic arguments for and against have not really changed since the issue was debated by Glanville (...) Williams and Yale Kamisar nearly 50 years ago. In this paper, the author argues in favour of Kamisar’s consequentialist framework. Any change in law and social policy should not be based solely on individual cases, heart wrenching though these may be. Instead, we need to assess the need for PAS, and weigh this against the risks of mistake and abuse. (shrink)

BackgroundThe purpose of this study is to make a philosophical argument against the phenomenological critique of standardization in clinical ethics. We used the context of clinical ethics in Saudi Arabia to demonstrate the importance of credentialing clinical ethicists.MethodsPhilosophical methods of argumentation and conceptual analysis were used.ResultsWe found the phenomenological critique of standardization to be flawed because it relies on a series of false dichotomies.ConclusionsWe concluded that the phenomenological framing of the credentialing debate relies upon two extreme views to be navigated (...) between, not chosen among, in the credentialing of clinical ethicists. (shrink)

ZusammenfassungPatientenverfügungen für spätere Zustände schwerer kognitiver Beeinträchtigungen, wie sie für Spätphasen der Demenz typisch sind, stoßen auf weitergehende Vorbehalte als Patientenverfügungen für anderweitige Zustände eingeschränkter Einwilligungsfähigkeit. Einer der Gründe dafür scheinen die ethischen und psychologischen Konflikte im Gefolge von Patientenverfügungen zu sein, mit denen Patienten in gesunden Tagen für bestimmte Phasen der Erkrankung die Nichtbehandlung interkurrenter Erkrankungen oder die Unterlassung künstlicher Ernährung verfügt haben, während sich unter den in der Patientenverfügung gemeinten Bedingungen keine Anzeichen finden, dass sie unter ihrer Situation (...) leiden. Der Beitrag argumentiert für diese Situation für eine „gemischte“ ethische Strategie: Patientenverfügungen im rechtlichen Sinne sollten insbesondere dann, wenn sie im Rahmen eines Advance Care Planning erstellt sind, befolgt werden, um zu verhindern, dass den Vorausverfügenden das Vertrauen in die spätere Befolgung ihres Wunsches nach Abbruch oder Nichtaufnahme medizinischer Behandlungen genommen wird. Dagegen sollten darüber hinausgehende „Pflegeverfügungen“ ohne rechtlich verbindlichen Status nur in Fällen beachtet werden, in denen zwischen vorausverfügtem und „natürlichem“ Willen Konkordanz besteht. (shrink)

This paper explores the use of advance directives in clinical dementia research. The focus is on advance consent to participation of demented patients in non-therapeutic research involving more than minimal risks and/or burdens. First, morally relevant differences between advance directives for treatment and care, and advance directives for dementia research are discussed. Then attention is paid to the philosophical issue of dementia and personal identity, and the implications for the moral authority of research advance directives. Thirdly, a number of practical (...) shortcomings of advance directives for non-therapeutic dementia research are explored and attention is paid to the role of proxies. It is concluded that upon a closer look the initial attractiveness of advance directives for dementia research is lessened, and that it is doubtful whether these instruments can compensate for the lack of subject consent in case of non-therapeutic dementia research involving more than minimal risks and/or burdens for the incompetent demented subject. (shrink)

I consider the current best interests of patients who were once thought to be either completely unaware (to be in PVS) or only minimally aware (MCS), but who, because of advanced fMRI studies, we now suspect have much more “going on” inside their minds, despite no ability to communicate with the world. My goal in this chapter is twofold: (1) to set out and defend a framework that I think should always guide thinking about the best interests of highly cognitively (...) compromised patients, and then (2) to defend a particular conclusion that applies to this specific patient population. The framework requires us to ask two questions: Is the individual suffering? Is the individual gaining any benefit from life? There must be benefit of some sort for life to be worth preserving, and the benefit must outweigh any suffering (if there is suffering present). I then argue it would be best overall to allow these patients to die. Either these patients are not really very aware at all, in which case they are most likely not suffering, but not benefiting from life either, or they are mentally intact enough to make benefit a theoretical possibility, but in fact they are not benefiting because they cannot communicate with anyone. Such patients would most likely suffer. As there is no way currently to address their suffering, we should allow them to die. No matter the truth about their cognitive lives, death would either be a neutral event, or a blessing. (shrink)