The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.

In current Western societies, increasing numbers of people express their desire to choose when to die. Allowing people to choose the moment of their death is an ethical issue that should be embedded in sound clinical and legal frameworks. In the case of persons with dementia, it raises further ethical questions such as: Does the person have the capacity to make the choice? Is the person being coerced? Who should be involved in the decision? Is the person’s suffering untreatable? (...) The use of Advance Euthanasia Directives (AED) is suggested as a way to deal with end-of-life wishes of persons with dementia. However, in the Netherlands—the only country in which this practice is legal—the experiences of patients, doctors, and relatives have been far from satisfactory.Our paper analyses this complex ethical challenge from a Dignity-Enhancing Care approach, starting from the Dutch experiences with AED as a case. We first consider the lived experiences of the different stakeholders, seeking out a dialogical-interpretative understanding of care. We aim to promote human dignity as a normative standard for end-of-life care practices. Three concrete proposals are then presented in which this approach can be operationalised in order to deal respectfully with the end-of-life choices of persons with dementia. (shrink)

The response to feeding needs in advanced dementia patients is a subject of ethical inquiry. Advanced dementia is the debilitating result of a range of neurodegenerative diseases. As this terminal illness progresses, patients develop mild to severe dysphagia that can make swallowing difficult. Of the two available options, artificial tube feeding or oral hand feeding, an estimated one-third of these patients will receive artificial tube feeding. However, observational studies have failed to validate the clinical benefits of (...) tube feeding. Ethics of care, the feminist philosophical perspective, and Ubuntu philosophy offer arguments for the choice of oral hand-feeding as a preferrable first option by caregivers as far as possible. These moral theories acknowledge that human beings can be dependent for long periods, mostly early and later years of life. Both views reflect an approach that draws people into a system of interdependent caring relationships. They encourage hand feeding as a way of exhibiting solidarity and respecting human dignity even at the end of life. (shrink)

The authors offer a fresh look at the debate about the use of assisted nutrition and hydration in advanced dementia. The philosophical and ethical issues are presented. The importance of distinguishing basic care from medical acts is explained. A key question is addressed: Does ANH nourish and hydrate the patient with dementia? The ANH debate is placed in its cultural context and contrasted with the Catholic response. A clinical analysis of the evidence for benefit and harm of (...) ANH in advanced dementia is given. The authors point out the lack of hard evidence against ANH, discuss questions that need further clinical research, and argue that there is sufficient evidence for a presumption, in principle, in favor of ANH in patients with advanced dementia. National Catholic Bioethics Quarterly 14.1 : 53–63. (shrink)

Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration showing (...) the impact of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care for the individual patient. (shrink)

Patients suffering from advanced dementia present ethicists and caregivers with a difficult issue: we do not know how they feel or how they want to be treated, and they have no way of telling us. We do not know, therefore, whether we ought to prolong their lives by providing them with nutrition and hydration, or whether we should not provide them with food and water and let them die. Since providing food and water to patients is considered to (...) be basic care that is morally required, it is usually only the provision of nutrition and hydration by artificial means that is considered to require ethical justification. Building on what I call a virtue-based conception of autonomy, I argue that, at least for some patients suffering from advanced dementia, even providing food and liquid by hand is morally wrong. (shrink)

Truth telling to persons living with dementia is a nuanced problem that demands negotiating between the hazards of principlism and the loving deceiver’s demand to lie as needed. To ban deception, as we do restraints, would be misguided and cruel. So too to demand we always tell the truth. We ought to adopt a practice called “creative care.” It begins with the premise that person’s living with dementia are capable of creativity. Creative care breaks down the mysterious fourth (...) wall we build around persons living with dementia, especially persons with advanced dementia. It invites us to see a person living with dementia as a person who is capable of creating something beautiful. They need our time and words, not our lies and sedatives. (shrink)

Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient‐centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing (...) malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision‐making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end‐of‐life care. (shrink)

Patients with advanced dementia are less likely than those with other terminal illnesses to receive palliative care. Due to the nature and course of dementia, there may be a failure to recognize the terminal stage of the disease. A possible and under-investigated explanation for this healthcare disparity is the healthcare practitioner who plays a primary role in end-of-life decision-making. Two potential areas that might impact provider decision-making are cognitive biases and moral considerations. In this analysis, we demonstrate (...) how the cognitive biases and moral considerations of practitioners related to clinical decision-making are inherent in clinical practice and may impact on providers’ accuracy related to diagnostic and treatment related decision-making associated with patients with advanced dementia. Anchoring, default, availability, representativeness and framing biases are cognitive biases based on the "Two System Model" that relate to decision-making in end-of-life care. In patients with advanced dementia, those biases may result in a tendency to adhere to traditional mandatory care, involving an aggressive approach to care, which values saving lives at all costs, without taking into account the possible suffering and long-term consequences. Aspects such as moral sensitivity and moral courage play an important role in ethical decision-making related to advanced dementia. Investigations of clinical decision-making that include the cognitive biases and ethical considerations of practitioners might advance the comprehensive understanding of the clinical decision-making process related to care of patients with advanced dementia and promote the quality of care given to this population. (shrink)

Euthanasia and physician-assisted suicide are common practice in the Netherlands. In response to increasing requests from patients to end their lives, physicians are finding themselves placed in particularly precarious situations because of advance directives written by patients suffering from severe dementia. In April 2020, the Supreme Court of the Netherlands issued two judgments in the so-called Dormicum case: a case involving the deliberate termination of the life of a 74-year-old woman suffering from advanced dementia by a geriatrician (...) in a nursing home in The Hague. The judgment of the lower criminal court was upheld, but the sanction imposed by the appellate disciplinary court was quashed. In this paper, the author reviews the two Supreme Court rulings, argues that both are fundamentally flawed and raises questions as to what they mean for Dutch criminal law, physicians, and patients going forward. (shrink)

End-of-life care, particularly for patients with advanced dementia, tests the medical covenant, both the integrity and aptness of what physicians have to offer and the fidelity with which they offer it. This article considers five ways of justifying the unilateral withholding of future treatment: (1) an affirmation of professional autonomy; (2) a defense of professional integrity; (3) a parentalist exercise of power on behalf of the patient and/or family; (4) a protection of the interests of third parties (footing (...) the bill); or (5) a protection of the interests of second parties (the physician or other providers). The article concludes with a sixth response to care for the stricken patient and family that seeks to attend more fully to the clinical reality of bonded humans in the throes of disease and death. (shrink)

Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a ‘right to die’. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD (...) is legally permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor’s freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups. (shrink)

A word, first, about the religious sensibility that I have found helpful to describe the care professionals owe to dying patients, particularly patients with advanced dementia.That word is covenant. It is a biblical term; but, today, it covers such dubious devices as real estate covenants. A real estate covenant often operates below the moral level of a contract to wall some people out of a neighborhood. Classically understood, however, the word covenant helps probe the obligations of doctors to (...) their patients more deeply than the notion of a contract. Covenants of the sort I have in mind and contracts appear to be first cousins; they both include an agreement and an exchange between parties. But, in spirit, contracts and covenants differ markedly. Contracts are external; covenants are internal to the parties involved. We sign contracts in order to discharge them expediently. Contracts are limited and time-bound — whether a contract to fix plumbing or to charge such and such for a medical procedure. (shrink)

This study aimed to understand the preserved elements of self-identity in persons with moderate to severe dementia attributable to Alzheimer’s disease. A semi-structured interview was developed to explore the narrative self among residents with dementia in a residential care facility and residents without dementia in an independent living setting. The interviews were transcribed verbatim from audio recordings and analyzed for common themes, while being sensitive to possible differences between the groups. The participants with dementia showed evidence (...) of self-reference even though losses in explicit memory were evident. The most noticeable difference between the two groups was time frame reference. Nonetheless, all participants showed understanding of their role in relationships and exhibited concrete preferences. Our findings suggest that memory loss and other cognitive deficits associated with moderate to severe dementia do not necessarily lead to a loss of “self.”. (shrink)

Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. Physicians are the locus of decision making for persons with dementia. It is the responsibility of the physician to assure that the surrogate understands the nature and trajectory of the disease and then to elicit the desired goal of care. Physicians need to ascertain whether any advance directives are available, and if so, whether they apply to the situation (...) of advanced dementia. Finally, physicians should help surrogates understand how the goals of care are best translated into practice. When the goal is comfort, this is achieved by assuring dignity, minimizing suffering, and promoting caring. In general, comfort should be the default goal of care, best implemented through palliative care or hospice. (shrink)

Nutrition and hydration—including artificially delivered, or assisted, nutrition and hydration (ANH)—are typically considered ordinary or proportionate care in the Roman Catholic moral tradition. They are thus morally obligatory, except when the benefit to the patient does not justify the burden their administration places on the patient or when they no longer prolong life (e.g., in end-stage disease when death is imminent). A review of Church documents and the medical literature provides convincing evidence that there are cases in which ANH provides (...) little hope of benefit and may impose an excessive burden on the patient. This paper closely examines advanced dementia of the Alzheimer’s (DAT) type and shows how ANH can be properly considered extraordinary care and hence is not obligatory in patients with advanced DAT. National Catholic Bioethics Quarterly 8.2 (Summer 2008): 291–305. (shrink)

Several religious traditions are widely believed to advocate the use of life-sustaining treatment in all circumstances. Hence, many believe that these faiths would require the use of a feeding tube in patients with advanced dementia who have lost interest in or the capacity to swallow food. This article explores whether one such tradition—halachic Judaism—in fact demands the use of artificial nutrition and hydration in this setting. Traditional arguments have been advanced holding that treatment can be withheld in (...) persons who are dying, in individuals whose condition causes great suffering, or in the event that the treatment would produce suffering. Individuals with advanced dementia can be considered to be dying, often suffer as a result of their dementia, and are likely to suffer from the use of a feeding tube. Given these observations and the absence of a compelling case for distinguishing between tube feeding and other forms of medical treatment, traditional Judaism appears compatible with withholding artificial nutrition for individuals with advanced dementia. (shrink)

Nutrition and hydration—including artificially delivered, or assisted, nutrition and hydration (ANH)—are typically considered ordinary or proportionate care in the Roman Catholic moral tradition. They are thus morally obligatory, except when the benefit to the patient does not justify the burden their administration places on the patient or when they no longer prolong life (e.g., in end-stage disease when death is imminent). A review of Church documents and the medical literature provides convincing evidence that there are cases in which ANH provides (...) little hope of benefit and may impose an excessive burden on the patient. This paper closely examines advanced dementia of the Alzheimer’s (DAT) type and shows how ANH can be properly considered extraordinary care and hence is not obligatory in patients with advanced DAT. National Catholic Bioethics Quarterly 8.2 (Summer 2008): 291–305. (shrink)

America is aging. But even more striking than the rise in the proportion of the population over age 65 is the unprecedented number of individuals who are living into their eighties and nineties. While many people remain robust well into advanced age, the dramatic increase in the number of the oldest old has brought with it an epidemic of Alzheimer’s disease and other dementias. Dementia is a highly prevalent condition — currently 5.4 million Americans have Alzheimer’s disease, a (...) number which may rise to 16 million by 2050 if there is no breakthrough in the prevention or treatment of the disease — but it disproportionately affects those over age 85, striking between one-third and one-half of this cohort. Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. (shrink)

Cases of dementia present us with difficult ethical dilemmas as we strive to care for those unable to care for themselves. In this article, I review the relevant Islamic texts on caring for the ill, alleviating suffering, and feeding the hungry-all in light of the modern clinical environment. I find that the ethical appropriateness of tube feeding at the end of life is not as clear-cut as it may seem. My analysis, however, suggests that Muslim scholars ought to favor (...) insertion of a feeding tube in patients who can no longer respond to assisted feeding. Nonetheless, several important issues require further clarification in this clinically important but neglected area of ethical inquiry. (shrink)

Objective: Previous research suggests a positive association between pain, depression and sleep. In this study, we investigate how sleep correlates with varying levels of pain and depression in nursing home patients with dementia.Materials and methods: Cross-sectional study with sleep-related data, derived from two multicenter studies conducted in Norway. We included NH patients with dementia according to the Mini-Mental State Examination from the COSMOS trial and the DEP.PAIN.DEM trial whose sleep was objectively measured with actigraphy. In the COSMOS trial, (...) NH patients were included if they were ≥65 years of age and with life expectancy >6 months. In the DEP.PAIN.DEM trial, patients were included if they were ≥60 years and if they had depression according to the Cornell Scale for Depression in Dementia. In both studies, pain was assessed with the Mobilization-Observation-Behavior-Intensity-Dementia-2 Pain Scale, and depression with CSDD. Sleep parameters were total sleep time, sleep efficiency, sleep onset latency, wake after sleep onset, early morning awakening, daytime total sleep time and time in bed. We registered use of sedatives, analgesics, opioids and antidepressants from patient health records and adjusted for these medications in the analyses.Results: Mean age was 86.2 years and 76.3% were female. Hierarchical regressions showed that pain was associated with higher TST and SE, less WASO and more DTS. More severe dementia was associated with more WASO and TiB. More severe depression was associated with less TST, less DTS and less TiB. Use of sedative medications was associated with less TiB.Conclusion: When sleep was measured with actigraphy, NH patients with dementia and pain slept more than patients without pain, in terms of higher total sleep time. Furthermore, their sleep efficiency was higher, indicating that the patients had more sleep within the time they spent in bed. Patients with more severe dementia spent more time awake during the time spent in bed. Furthermore, people with more severe depression slept less at daytime and had less total sleep time Controlling for concomitant medication use did not affect the obtained results. (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)

In “On Avoiding Deep Dementia,” Norman Cantor astutely notes that, for some individuals, the concept of “protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect.” This cannot be argued with. Cantor's solution, however—that in the wake of a dementia diagnosis, patients should have the option to direct, in advance, instructions for voluntary stopping of eating and drinking should they develop a state of deep dementia—is more ethically challenging than it may first appear.Respect for (...) autonomy is one of the most fundamental principles of bioethics, and it requires that we allow patients with capacity to refuse life‐sustaining treatment, even when that treatment is something as seemingly innocuous as nutrition and hydration. If a capacitated person uses an advance directive to prospectively refuse artificial nutrition or hydration, then that treatment must be withheld if the person develops dementia and loses the ability or willingness to eat. Cantor is incorrect, however, in suggesting that an advance directive can require that nutrition and hydration be withheld from a patient with dementia who actively requests to eat or drink. Regardless of the language in an advance directive, caregivers cannot be compelled to abandon their duty to attend to the person's human dignity, nor can physicians be compelled to sedate a person with moderate or severe dementia because that person continues to be receptive to eating and drinking. (shrink)

Seasoned clinical ethics consultants are likely familiar with concerns brought to them about the home environment for a vulnerable patient not meeting criteria for a “safe discharge.” For some pati...

In a recent paper in JME, Shelton and Geppert use an approach by Menzel and Chandler-Cramer to sort out ethical dilemmas about the oral feeding of patients in advanced dementia, ultimately arguing that the usefulness of advance directives about such feeding is highly limited. They misunderstand central aspects of Menzel’s and Chandler-Cramer’s approach, and in making their larger claim that such directives are much less useful than typically presumed, they fail to account for five important elements in writing (...) good directives for dementia and implementing them properly: (1) Directives should be paired with appointment of trusted agents. (2) Appointed agents’ authority can be greatly weakened without advance directives to guide them. (3) Directives’ implementation does not require clinically precise assessment of dementia’s stage. (4) Palliative support is typically required for withholding of oral feeding to be compassionate. (5) The central purpose of stopping feeding is often not the avoidance of suffering but not prolonging unwanted life. (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)

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)

Advance directives permit competent adult patients to provide guidance regarding their care in the event that they lose the capacity to make medical decisions. One concern about the use of advance directives is the possibility that, in certain cases in which a patient undergoes massive psychological change, the individual who exists after such change is literally a (numerically) distinct individual from the person who completed the directive. If this is true, there is good reason to question the authority of the (...) directive Ð which is supposed to apply to the individual who completed it, not to someone else. This is `the someone else problem'. After briefly introducing advance directives as a basis for medical decision-making, this paper elaborates `the someone else problem' in the context of severe dementia. The paper then reconstructs the reasoning that leads to this putative problem and exposes the important underlying assumption that we are essentially persons. An alternative view of what we are, one that regards personhood as inessential, is then considered, before several arguments are advanced in favor of that alternative view. The paper next explores implications for advance directives: `The someone else problem' is effectively dissolved, while it is noted that a related problem (one beyond the paper's scope) may persist. A few implications beyond advance directives are also identified. (shrink)

In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we (...) conducted a qualitative study. We explored the opinions and arguments of researchers in the field of dementia, aiming to map the possibilities and constraints of ARDs. It was argued that a positive ARD could be valuable to discuss research participation with proxies, and patients with a negative ARD will be excluded from research trials. However, it is argued that an ARD cannot replace the informed consent procedure, and in practice proxy dissent will overrule written consent. The practical use of these directives is thus limited, as most researchers will not comply with positive directives. (shrink)

In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second (...) position.I agree with several of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients. (shrink)

Background:Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures.Aim:To explore the view of people in the early stage of dementia on planning for future care.Research design:The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven.Participants and research context:Dementia nurses assisted in the recruiting of people with dementia for participation in the (...) study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study.Ethical considerations:People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information.Findings:The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now.Discussion:High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group.Conclusion:The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

The authors of the paper ‘Advance euthanasia directives: a controversial case and its ethical implications’ articulate concerns and reasons with regard to the conduct of euthanasia in persons with dementia based on advance directives. While we agree on the conclusion that there needs to be more attention for such directives in the preparation phase, we disagree with the reasons provided by the authors to support their conclusions. We will outline two concerns with their reasoning by drawing on empirical research (...) and by providing reasons that contradict their assumptions about competence of people with dementia and the importance of happiness in reasoning about advance directives of people with dementia. We will draw attention to the important normative questions that have been overstepped in their paper, and we will outline why further research is required. (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)

As the prevalence of dementia increases across the Western world, there is a growing interest in advance care planning, by which patients may make decisions on behalf of their future selves. Under which ethical principles is this practice justified? I assess the justification for advance care planning put forward by the philosopher Ronald Dworkin, which he rationalises through an integrity-based conception of autonomy. I suggest his judgement is misguided by arguing in favour of two claims. First, that patients with (...) dementia qualify for some right to contemporary autonomy conceptualised under the ‘sense of liberty’ it provides. Second, that respecting precedent autonomy, such as an advance care plan, is not essential to Dworkin’s integrity-based account of autonomy. Together, my claims problematise the practice of using advance decisions in the context of dementia. (shrink)

Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients’ Advance Directives (ADs) regarding end-of-life care. The applicability and standing of ADs prepared by Alzheimer’s patients is a persistent issue in bioethics. Those who argue against giving ADs full status take two main approaches: (1) appealing to beneficence on behalf of the Alzheimer’s patient and (2) claiming that there is no longer any personal equivalence between the AD’s creator and the subject (...) of the AD. In this paper, I present profound arguments against both approaches. Firstly, I argue that the principle of beneficence cannot apply in the case of Alzheimer’s patients, and, secondly, that the moral and legal authority of the AD need not depend on strict equivalence of personal identity. I conclude by arguing that valid ADs protect the dignity and autonomy of Alzheimer’s patients and that, therefore, there are moral obligations to uphold ADs which should be reflected in public policy and legislation. (shrink)

Dementia is a growing issue at the end of life that presents unique challenges for advance care planning. Advance directives are a useful and important component of end-of-life planning, but standard advance directives have less utility in cases of loss of capacity due to dementia. An advance directive designed to specifically address end-of-life issues in the setting of dementia can provide patients with increased autonomy and caregivers with improved information about the desires of the individual in question. (...) The Dartmouth Dementia Directive is a dementia-specific advance directive, available online, that seeks to address common concerns of individuals who are planning for dementia-related end-of-life care. This directive was piloted in a community-based workshop, which provided important details and perspective on the best use of dementia-specific advance directives in the greater population. (shrink)

Many people are worried about developing dementia, fearing the losses and burdens that accompany the condition. Dementia‐specific advance directives are intended to address dementia's progressive effects, allowing individuals to express their treatment preferences for different stages of the condition. But enthusiasm for dementia‐specific advance directives should be tempered by recognition of the legal, ethical, and practical issues they raise. Dementia‐specific advance directives are a simplistic response to a complicated situation. Although they enable people to register (...) their future care preferences, in many cases, those preferences will not, and should not, determine their later care. (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)

Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient’s preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to (...) show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients. (shrink)

Ronald Dworkin argued that Advance Directives informed by a principle of autonomy ought to guide decisions in relation to the treatment of those in care for dementia. The principle of autonomy in play presupposes a form of competence that is tied to the individual person making the Directive. This paper challenges this individualist assumption. It does so by pointing out that the competence of a patient is inherently relational, and the key illustrative case to make this point is the (...) case of music therapy. In music therapy, a relatively recent treatment modality in aged care, patients previously thought to be permanently unresponsive are shown on the contrary to be capable of significant levels of social agency. The conclusion to draw is that Advance Directives that fail to acknowledge the real possibility of such relational competence are misapplied. (shrink)

A competent person can avoid the onset of dementia by refusing life‐sustaining medical care and by voluntarily stopping eating and drinking, bringing life to an end well before any health crisis. A competent person can also try to limit the duration of dementia by drafting an advance directive that sets bounds on the life‐sustaining care, including artificial nutrition and hydration, that medical caregivers can provide when the person no longer has the capacity to make her own medical decisions. (...) But between these two strategies there can lie a significant gap. A person could live with moderate to severe dementia for a considerable time, no longer able to voluntarily stop eating and drinking yet also not yet requiring the life‐sustaining care forbidden by advance directive.This gap has been much discussed in recent years in the Hastings Center Report. Several years ago (in the May‐June 2014 issue), Paul Menzel and M. Colette Chandler‐Cramer argued for what they described as a moderate correction to the dominant view that food and water should always be offered to a patient with dementia if the patient expresses a desire to eat and drink. The problem is taken up again by the legal scholar Norman L. Cantor in this issue (July‐August 2018), and Cantor, too, tries to find a moderate alternative. (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)

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)

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)

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such directives. (...) The author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don’t, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, “reciprocity” is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making. (shrink)

Advance directives are critically important for capable individuals who wish to avoid the burdens of life-prolonging interventions in the advanced stages of dementia. However, this paper will argue that advance directives should have less application to questions about feeding patients during the clinical course of dementia than often has been presumed. The argument will be framed within the debate between Ronald Dworkin and Rebecca Dresser regarding the moral authority of precedent autonomy to determine an individual’s future end-of-life (...) care plan. We will use a brief analysis of the positions taken in two important papers that come out of the Dworkin/Dresser debate and a hypothetical patient, John, who will be followed from diagnosis of dementia to death, to show how advance directives should apply to key points in the progression of his disease, particularly in relation to food and nutrition. (shrink)

Euthanasia advocates have recently begun counseling people to create advance directives calling for oral food and water to be withheld if the person reaches a certain stage of dementia. The author shows that these directives are in fact requests for euthanasia, and they leave vulnerable people subject to poor-quality care. Both surrogate decision makers and Catholic institutions have a moral obligation not to implement such directives, and surrogates, rather than withdrawing as proxies, have a moral obligation to advocate for (...) the life and proper care of the incompetent person. Finally, the author argues that society is morally culpable if it does not strongly resist euthanasia in all its forms. National Catholic Bioethics Quarterly 16.3 : 421–434. (shrink)

Research represents an avenue through which patients can contribute to the knowledge base surrounding their condition. However, persons with dementia cannot legally consent to participation in most scientific research. One possible avenue to preserve patient autonomy in the sphere of research is through an advance planning document. Scholars of medicine, ethics, and law have largely approached this topic from a theoretical angle, compelling the authors to develop and implement a tangible research-specific advance planning tool. In order to inform the (...) creation of this novel legal instrument, the present study leveraged semistructured telephone interviews with cognitively intact older adults in the Upper Connecticut River Valley region of New Hampshire. Participants were prompted to reflect on their attitudes toward participation in scientific research, should they develop dementia. They were also asked to consider the possibility of incorporating research into their advance planning regime, their preferred format for a research-specific advance planning tool, and the potential relationship between an advance planning tool and their surrogate decision maker in the context of research participation. Qualitative analysis was employed to extract themes from interview responses, revealing a pervasive desire for an advance planning tool that embraces specificity, flexibility, practicality, and the integral role of the surrogate decision maker. Ultimately, through collaboration with physicians and an elder law attorney in the region, these findings were translated into a research-specific advance planning component within the Dartmouth Dementia Directive. (shrink)