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)

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)

In this article, I consider whether the advance directive of a person in minimally conscious state ought to be adhered to when its prescriptions conflict with her current wishes. I argue that an advance directive can have moral significance after its issuer has succumbed to minimally conscious state. I also defend the view that the patient can still have a significant degree of autonomy. Consequently, I conclude that her advance directive ought not to be applied. Then I (...) briefly assess whether considerations pertaining to respecting the patient's autonomy could still require obedience to the desire expressed in her advance directive and arrive at a negative answer. (shrink)

This paper presents the results of a qualitative interview study exploring English and French physicians’ moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the role of advance directives in each context. The interviews focus on problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; decision-making procedures and the participation (...) of proxies/relatives; previous experience with ADs and views on their usefulness; and perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice. (shrink)

BackgroundAdvance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people’s (...) attitudes towards ADs.MethodsAn online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a –form—which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale—was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023.ResultsA total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence.ConclusionThe results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens’ autonomy in end-of-life care planning. (shrink)

How ought we respond to advance directives that appear to fly in the face of a severely mentally impaired patient's quality of life? An advance directive is a legal instrument wherein a person records instructions regarding the medical treatment that she is to receive in the event that she becomes persistently incapable of refusing or giving informed consent to treatment. Where these instructions are legally binding, they enable a person to exercise control over her future medical treatment. This has (...) been welcomed by some on the grounds that it increases patient autonomy, but there has also been concern that in cases in which a patient is left conscious but severely mentally impaired, the person's advance .. (shrink)

The medical profession consistently strives to uphold patient empowerment, equality and safety. It is ironic that now, at a time where advances in technology and knowledge have given us an increased capacity to preserve and prolong life, we find ourselves increasingly asking questions about the value of the lives we are saving. A recent editorial by Professor Raanan Gillon questions the emphasis that English law places on the sanctity of life doctrine. In what was described by Reverend Nick Donnelly as (...) a “manifesto for killing patients”, Professor Gillon argues that the sanctity of life law has gone too far because of its disregard for distributive justice and an incompetent person’s previously declared autonomy. This review begins by outlining the stance of the sanctity of life doctrine on decisions about administering, withholding and withdrawing life-prolonging treatment. Using this as a foundation for a rebuttal, a proposal is made that Professor Gillon’s assertions do not take the following into account. (shrink)

This chapter contains sections titled: What Are Advance Directives and Why Do We Have Them? The Origins, and Limitations, of the “Living Will” Legislatively Authorized “Instruction Directives” Legislatively Authorized “Appointment Directives” Advance Directives Outside the United States Conceptual Problems and Practical Difficulties Barriers Remaining to the Effective Use of Advance Directives References Further reading.

In lieu of an abstract, here is a brief excerpt of the content:Carmen MirandaJessica LesCarmen Miranda, she called herself today. She suffered from decades of schizoaffective disorder and now more recently, end–stage renal disease from uncontrolled diabetes. I first met Carmen two weeks prior when she had been brought to the hospital on a 72 hour psychiatric hold for self–harm. She failed to go to dialysis for a week, an act that would kill her if allowed to continue. Now she (...) was here again, for the same reason.Everyone of competent mind has the right to refuse medical treatment. Unfortunately, Carmen’s mind was not currently grounded in reality. So against her will, our family medicine team admitted her to the hospital and arranged for dialysis early the next morning. None of us liked doing this. Fortunately, when the time came for the dialysis tech to insert the dialysis catheter into her shunt, Carmen agreed peacefully. After her dialysis, we had no right to keep her in the hospital because her life was no longer in danger, at least until the next week. We discharged her to home. However the question remained, what about next time?To navigate this ethical gray zone, we called an ethics committee meeting. An ethicist, nurses, hospital social workers, the inpatient family medicine resident team, and most importantly, two people who knew her very well—her caseworker and long–term psychiatrist—discussed her case for an [End Page 103] hour. Our medicine team learned that in her last period of clarity two months prior, Carmen made contradictory statements regarding her wishes. Carmen told her caseworker she was tired of dialysis and being sick and stated it was time to let herself go. During the same lucid week she told her psychiatrist that she was grateful she had been forced to complete dialysis against her wishes after a run of non–adherence while suffering psychosis a couple of months prior. Now months later she was in a downward spiral, exacerbated by the deterioration of her mentally ill husband. If she missed a dialysis treatment here and there, it was okay, but when she went on a run missing several treatments, it was slow suicide.The ethics meeting concluded that Carmen needed to complete an advanced directive and select a power of attorney other than her gravely incompetent husband as soon as she was deemed competent. If she did not become lucid again, her psychiatric team should apply for conservatorship, a legally appointed person who serves as guardian for a gravely disabled mentally ill person. However, conservatorship would take months. In the interim, the ethics committee ruled that our medicine team would continue to provide lifesaving treatment for her, against her wishes if necessary.The ethics meeting adjourned but our medicine team remained in a gray area. To what length should we go to treat her? If she continued to refuse dialysis would we hold her in the hospital until she became sufficiently docile by inevitable uremia that we could peacefully dialyze her? Possibly. Would we go so far as to put her under anesthesia to complete her dialysis? Personally, I hoped not.Just three days after the ethics committee meeting, her caseworker found Carmen yelling nonsensical phrases through the front door of her home while her husband held the door shut with his beer belly and good shoulder. After gaining entry later in the day, Carmen’s caseworker found their mutual medication collection strewn in the bathtub and no food in the house. He placed Carmen on a psychiatric hold and transported her to the hospital. The emergency department paged me when Carmen arrived. I braced myself for the possibilities that lay ahead. When I reached Carmen, she was sitting in a room reserved for psychiatric patients and under watch by a friendly police officer accustomed to these situations.“Hi, Carmen,” I said, one step into her room. She sat on the edge of the gurney, wrapped in three blankets.“Cold,” she said.The police officer spoke from behind my shoulder, “She has been requesting cup after cup of ice water, she won’t take anything else.”“Let’s get you more comfortable.” I returned with a warm blanket and draped it over her... (shrink)

It is commonly believed thatgeriatric medicine generates a distinctive setof ethical problems. Implicated are such issuesas resource allocation, competence and consent,advance directives, medical futility anddeliberate death. It is also argued that itwould be unjust to allow the elderly to competewith younger populations for expensive andscarce health care resources because theelderly “have already lived,” and that treatingthem the same as these other populations woulddiminish the available resources unfairly,prolong a life of inevitably failing health andresult in increased health care expenditures.In fact, however, (...) this perception of ethicaluniqueness is mistaken. Differences in medicalconditions, demographics and aetiology shouldnot be allowed to obscure the fact that ethicalissues in geriatric medicine are essentiallythe same as those faced in any other area ofhealth care, and that the solutions that areadopted in the geriatric context must beconsistent with the ethical principles that arefollowed elsewhere. The paper argues that theroot of the mistaken perception lies in theabandonment of the Hippocratic mandate ofmedicine and in an unreflective adherence tothe belief that medical advances are inevitablybeneficial. It is suggested that a return topatient-centred medicine and the use of ethicsimpact analyses before introducing medicaladvances may be ethically appropriate. (shrink)

In Speaking for the Dying: Life‐and‐Death Decisions in Intensive Care, Susan Shapiro attempts to penetrate and organize the chaotic communications between physicians and family members who are making medical decisions for people who have lost the capacity to make their own medical decisions. The work is based on observations undertaken by Shapiro and a coresearcher of one thousand encounters between physicians and the family members of two hundred patients too sick to participate. Their ethnographic work, which is both traditional and (...) innovative, leads to stunning findings. They reveal an inadequacy among surrogates that is undeniable, vast, and potentially tragic—if measured by the questionable standard of adhering to the patient's preferences. Further confirming research would be helpful, but what Shapiro has recognized already should shake the foundations of advance care planning. (shrink)

Advance patient directives are various forms of anticipatory medical directives made by competent individuals for the eventuality of future incompetence. They are therefore appropriate instruments for competent patients in the early stage of Alzheimer's disease to document their self-determined will in the advanced stages of dementia. Theoretical objections have been expressed against the concept of advance patient directives (problems of authenticity and identity) which, however, cannot negate the fundamental moral authority of advance patient directives. Therefore, patients, family members, and (...) physicians should make use of the appropriate form of advance directive as part of common treatment and care planning. Advance directives, when utilized intelligently, represent appropriate instruments for shared decision-making by patient, family members and physician. They should be utilized to a greater extent, particularly for the treatment planning of demented patients. (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)

In lieu of an abstract, here is a brief excerpt of the content:Comment on Hospice of Washington's PolicyJohn A. Robertson (bio)The recent history of medical ethics may accurately be described as a history of coming to terms with personal autonomy and informed consent across the range of medical practice. Nowhere has this recognition been more important than in decisions to withhold or withdraw life-sustaining medical procedures from terminal and chronically ill patients.Despite the widespread acceptance of autonomy in these decisions, many (...) people—physicians, families, and policymakers—have balked at extending it to the withdrawal of artificially supplied fluids and nutrition. The symbolic connotations of food and water have led some persons to perceive cessation of medically-supplied fluids and nutrition to be a cruel, barbarous act, rather than the merciful respect for the dying patient that such withdrawal usually represents.Two recent events might help resolve the controversy, and ensure that decisions about artificial fluid and nutrition are handled like any other medical intervention—according to patient and family choice and patient welfare. One event is the Supreme Court decision in Cruzan (Cruzan v. Director of Missouri Department of Health, 110 S.Ct. 2841, 1990). Although the Supreme Court upheld Missouri's constitutional power to require artificial nutrition for a patient in a persistent vegetative state, its decision was not based on the symbolic importance of artificial fluids and nutrition. No Supreme Court justice saw a significant difference between medically-supplied nutrition and hydration and other medical interventions, thus allowing them to be discontinued either directly or by advance directive on the same basis as other medical interventions.The second event is the publication of the statement of "Philosophy Regarding Medical Intervention to Supply Fluids and Nutrition" by Hospice of Washington (or similar statements by other organizations). This statement is useful and important because it removes the issue of food and water from its symbolic overlay [End Page 139] and places it in the real context of dying hospice patients. It makes clear that the overriding consideration should be benefit to the patient "in accord with the patient's wishes or those of the appropriate surrogate(s) for the patient." Depending on those wishes and their impact on the patient, this position may or may not involve medically-supplied fluids and nutrition.This statement is also helpful in showing the medical complexity of such decisions in terms of their actual effect on dying patients. Rather than an either/or position, it recognizes that fluids may harm a dying patient by increasing discomfort, and that "persons near death do not ordinarily tolerate substantial volumes of enteral feedings." Thus rather than adhere to a symbolically-based position about the meaning of food and water to a dying patient, the important thing is to look to that patient's needs and give fluids or not, as the patient's wishes and situation demand.Fortunately, the law in most jurisdictions will recognize such a position. In those few jurisdictions that have made a fetish of artificial fluids and nutrition, the law should be changed, for the HOW statement makes clear that such a position may actually end up harming dying patients. Patient welfare should be privileged above all else, and patient welfare may often entail that fluids and nutrition not be medically supplied. Even then, however, caregivers will look to patient comfort and remedy dry mouths and lips with lubricants and ice chips.The HOW statement is, in my view, a very useful guideline not only for hospices but for hospitals, too—for any situation in which a patient is terminally ill and soon to die. A somewhat different set of issues arises, however, when the patient is chronically ill and incompetent, and will survive for long periods with medically-supplied fluids and nutrition. Recognition of patient rights in those situation should also permit cessation of fluids and nutrition on the same basis that respirators, antibiotics, and other life-sustaining measures may be withheld. But the withholding of medically-supplied fluids and nutrition from a patient who no longer has interests in surviving in an extremely debilitated condition raises different issues from withholding fluids that could cause such discomfort and nutrition when the patient is imminently dying. In either case, patient... (shrink)

As an incapacitated patient is unable to make decisions regarding their care, physicians turn to next-of-kin when appointing a surrogate decision-maker in the absence of an advanced directive. With the increasing complexity of modern families, physicians are facing new ethical dilemmas when choosing the individual to make end-of-life decisions for their patients. Legal definitions and hierarchies are no longer adhering to the purpose of a surrogate-decision maker, which is to maintain a patient’s autonomy. Moral criteria for surrogates, which (...) emphasize the importance of making decisions that align with the patient’s desires and wishes and negate biological relationships over emotional connections, are becoming much more important. This paper explores a case study in which physicians must appoint a surrogate decision-maker for an incapacitated patient, forced to choose between a biological relationship and a strong emotional connection. (shrink)

A high level of confidence in the identity of individuals is required to let them die as ordered by an advance directive. Thus, if we are animalists, then we should lack the confidence required to apply lethal advance directives to the cheerfully demented, or so I argue. In short, there is consensus among animalists that the best way to avoid serious objections to their account is to adopt an ontology that denies the existence of brains, hands, tables, chairs, iced-tea, (...) and lemonade. The adoption of such an ontology reduces the justificatory force of commonsense, which is key in arguing that we are animals and that we persist as long as we are biologically alive. With this loss of justification comes the loss of a high level of confidence that Quinn-pre-dementia’s lethal advanced directive applies to Quinn-post-dementia, via identity. If we do not have a high level of confidence that Quinn-pre-dementia’s advanced directive applies to Quinn-post- dementia, then it is not enough (on its own) to let Quinn-post-dementia die. (shrink)

The accuracy of proxies when they interpret advance directives or apply substituted decision-making criteria has been called into question. It therefore became important to know if the Andalusian Advance Directive Form (AADF) can help to increase the accuracy of proxies' predictions. The aim of this research was to compare the effect of the AADF on the accuracy of proxies' predictions about patients' preferences with that gained from informative and deliberative sessions about end-of-life decision making. A total of 171 pairs (...) of patients and their proxies were randomized to three groups. The control group's answers to the Life Sustaining Preferences Questionnaire (LSPQ) were compared with their proxies' answers to the same questionnaire. In one intervention group, the patients had already completed the AADF and given it to their proxies, who used it to guide their own answers to the LSPQ. In the second intervention (discussion) group, both patients and proxies attended two educative sessions guided by trained nurses and later filled in the LSPQ. Comparisons of accuracy and other variables showed a strong association with the discussion group. The findings show that promoting communication between patients and their proxies improves the accuracy of proxies' predictions much more than isolated use of the AADF form. (shrink)

Advance directives are not a part of the healthcare service in Turkey. This may be related with the fact that paternalism is common among the healthcare professionals in the country, and patients are not yet integrated in the decision-making process adequately. However, starting from the enactment of the Regulation of Patient Rights in 1998, this situation started to change. While the paternalist tradition still appears to be strong in Turkey, the Ministry of Health has been taking concrete measures in the (...) recent years to ensure that patient rights are implemented in healthcare practice. Therefore, Turkey now seems to be in a transitional period where a move towards a more patient-autonomy centred approach is being supported by the regulatory authorities, as well as the academic circles and the public at large. In the light of this background, this paper aims to examine the potential benefits of advance directives, particularly with regard to their possible effect in the clinical decision-making process of Turkey's context. It will be argued that advance directives, if correctly understood and implemented in the right settings, may be beneficial, particularly for improving communication between patients and healthcare professionals and for implementing of the right to refuse treatment. (shrink)

The long-running discourse on respect for human dignity and autonomy in the physician-patient relationship pertaining to persons with dementia (PwDs) is explored deeply in this paper through the use of a real-life case, to highlight the complex interplay between autonomy and best interest when it comes to a PwD's experiential and critical interests. Many scenarios and perspectives are described and applies to the case. However, there are a few perspectives, which are touched upon that could do with further scrutiny. Firstly, (...) it has been argued that rigid adherence to the advance directives of PwDs means that PwDs will be the only people who are not allowed to ever change their minds. This withdrawal of a fundamental freedom hardly accords with respect for human dignity, or for any residual autonomy that these individuals may still enjoy. Secondly, viewing this case through the lens of care ethics, and incorporating the recently proposed conceptual framework of anthropological vulnerability, may reveal valuable insights regarding care provision and caring physician-patient relationships. These perspectives would analyse the role of relational ontology, particularly in relation to significant others, significant communities, and caregivers. (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 this commentary, I critique three aspects of Emily Walsh's proposal to reduce the moral and legal weight of advance directives: (1) the ambiguity of its initial thesis, (2) its views about the ethics and legality of clinical practice, and (3) its interpretation and application of Ronald Dworkin’s account of advance directives and L.A. Paul's view on transformative experience. I also consider what Walsh’s proposal would mean for people facing the prospect of dementia. I conclude that our reasons to honor (...) many advance directives survive the move to a transformative experience framework. (shrink)

Spain is one of the most advanced European countries in terms of the legislative and administrative development of ADs. Article 11 of Law 41/2002, concerning Patient Autonomy, regulates ‘advance directives’ and has prompted various Autonomous Regions to develop legislation in this area. Nevertheless, whilst the variety of legislations in different territories presents advantages, the disparity of criteria also presents problems.Despite significant legislative development, only 23,000 Spanish citizens have filled in an AD. Clearly, AD use is confined to a minority. (...) Several surveys, however, show that the Spanish population views these documents in a positive light. Thus, we must analyse this discrepancy between attitude and practice. A similar situation exists amongst health professionals. Whilst they generally feel that the use of ADs is positive and necessary, they are frequently unwilling to employ them.Bioethical literature and research on ADs has significantly increased in Spain over the last six years. It is likely that this trend will continue in the foreseeable future; but more resources and effort are required if ADs are to become consolidated. (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)

Advance directives convey consumers’ wishes about accepting or refusing future treatment if they become incompetent. They are designed to communicate a competent consumer’s perspective regarding the preferred treatment, should the consumer later become incompetent. There are associated ethical issues for health practitioners and this article considers the features that are relevant to nurses. In New Zealand, consumers have a legal right to use an advance directive that is not limited to life-prolonging care and includes general health procedures. Concerns may (...) arise regarding a consumer’s competence and the document’s validity. Nurses need to understand their legal and professional obligations to comply with an advance directive. What role does a nurse play and what questions arise for a nurse when advance directives are discussed with consumers? This article considers the cultural dimensions, legal boundaries, consumers’ and providers’ perspectives, and the medical and nursing positions in New Zealand. (shrink)

Advance directives, a set of written instructions that a person gives that specify what actions should be taken for their health if they are no longer able to make decisions due to illness or incapacity, are a well-implemented tool in America, but few European countries have specific provisions about them in the law. Significant differences exist regarding the way advance directives are regulated and implemented between countries. The authors analyze the attitudes of several professional categories in Romania and Lithuania towards (...) the advance directive using data obtained by conducting several interviews in Lithuania and a focus group in Romania. Both Romania and Lithuania are post-communist, now European Union member countries. All respondents thought that advance directives should be introduced in the law, but their social acceptance is expected to be low in Lithuania. (shrink)

As increasing proportions of our global population age, transgender people are experiencing higher rates of dementia, and many are afraid to enter long-term care. Structural interventions such as advance directives may help mitigate fears around entering long-term care by managing specific anxieties that transgender people may have about dementia, loss of decision-making capacity, and discrimination in long-term care settings.

Modern medicine has put a new twist on one of our most fundamental values: self-determination. Although advance directives may be used to request treatment, this volume limits its focus to their more common function--the refusal of treatment. Timely and comprehensive, it provides a stimulating overview of this relevant topic, addressing such questions as: What are the individual and societal benefits of advance directives? Does an advance directive tamper with the sanctity of life? Will normalizing directives have an adverse effect (...) on the practice of medicine? Should a patient specify treatments to be withheld within a directive? What legal sanctions should apply against those who ignore directives? and What is a physician's role in helping his patient formulate an appropriate directive? (shrink)

Advance directives enable individuals to project their healthcare preferences into a period of anticipated incapacity. With advance directives, individuals can designate whom they would like to have make healthcare decisions for them, or give their healthcare provider advice on what to do, or both. Canada has an unusually wide variety of legislative approaches to advance directives. In what follows we describe and evaluate these, with the aim of pointing the way toward the ideally best legislation and policies on such directives.

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)

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)

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)

Definition of the problemAdvance directives involve evaluative assumptions about the further course of one’s life that can be more or less appropriate and thus call for ethical reflection. This contribution focuses on the basis and criteria of such assumptions. We argue that considerations regarding the temporal structure of a good life constitute a particularly relevant perspective in this context.ArgumentsEmpirical studies on the individual composition of advance directives point to the important role of personal values and life plans that can change (...) over time. Therefore, we first contextualize advance directives from the perspective of an ethics of the good life and then discuss their implications with regard to different levels of temporality, comprising fundamental parameters of human existence in time, cultural models of the life course, as well as narratives of the individual trajectory of life.ConclusionConceptions of a good life and its temporal structure represent an important perspective for drafting and interpreting advance directives. Their consideration provides a more nuanced understanding of the evaluative implications of advance care planning. This can benefit individual patients, service providers, as well as policy makers. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 32-41, January/February 2022.

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)

This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual’s rights over that body can support (...) the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify. (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 Western societies advance directives are widely recognised as important means to extend patient self-determination under circumstances of incapacity. Following other countries, England and France have adopted legislation aiming to clarify the legal status of advance directives. In this paper, I will explore similarities and differences in both sets of legislation, the arguments employed in the respective debates and the socio-political structures on which these differences are based. The comparison highlights how different legislations express different concepts emphasising different values accorded (...) to the duty to respect autonomy and to protect life, and how these differences are informed by different socio-political contexts. Furthermore each country associates different ethical concerns with ADs which raise doubts about whether these directives are a theoretical idea which is hardly applicable in practice. (shrink)

Research Objective: This study focuses on ADs in the Netherlands and introduces a cross-cultural perspective by comparing it with other countries. Methods: A questionnaire was sent to a panel comprising 1621 people representative of the Dutch population. The response was 86%. Results: 95% of the respondents didn't have an AD, and 24% of these were not familiar with the idea of drawing up an AD. Most of those familiar with ADs knew about the Advanced Euthanasia Directive (AED, 64%). (...) Both low education and the presence of a religious conviction that plays an important role in one's life increase the chance of not wanting to draw up an AD. Also not having experienced a request for euthanasia from someone else, and the inconceivability of asking for euthanasia yourself, increase the chance of not wanting to draw up an AD. Discussion: This study shows that the subjects of palliative care and end-of-life-decision-making were very much dominated by the issue of euthanasia in the Netherlands. The AED was the best known AD; and factors that can be linked to euthanasia play an important role in whether or not people choose to draw up an AD. This differentiates the Netherlands from other countries and, when it comes to ADs, the global differences between countries and cultures are still so large that the highest possible goals, at this moment in time, are observing and possibly learning from other cultural settings. (shrink)

Advance directives (ADs), which are also sometimes referred to as ‘living wills’, are statements made by a person that indicate what treatment she should not be given in the event that she is not competent to consent or refuse at the future moment in question. As such, ADs provide a way for patients to make decisions in advance about what treatments they do not want to receive, without doctors having to find proxy decision-makers or having recourse to the doctrine of (...) necessity. While patients can request particular treatments in an AD, only refusals are binding. This paper will examine whether ADs safeguard the autonomy and best interests of the incompetent patient, and whether legislating for the use of ADs is justified, using the specific context of the legal situation in the United Kingdom to illustrate the debate. The issue of whether the law should permit ADs is itself dependent on the issue of whether ADs are ethically justified; thus we must answer a normative question in order to answer the legislative one. It emerges that ADs suffer from two major problems, one related to autonomy and one to consent. First, ADs’ emphasis on precedent autonomy effectively sentences some people who want to live to death. Second, many ADs might not meet the standard criteria for informed refusal of treatment, because they fail on the crucial criterion of sufficient information. Ultimately, it transpires that ADs are typically only appropriate for patients who temporarily lose physical or mental capacity. (shrink)

Advance directives typically have two defects. First, most advance directives fail to enable people to effectively avoid unwanted medical intervention. Second, most of them have the potential of ending your life in ways you never intended, years before you had to die.

Next SectionThe personal identity problem expresses the worry that due to disrupted psychological continuity, one person’s advance directive could be used to determine the care of a different person. Even ethicists, who strongly question the possibility of the scenario depicted by the proponents of the personal identity problem, often consider it to be a very potent objection to the use of advance directives. Aiming to question this assumption, I, in this paper, discuss the personal identity problem’s relevance to the (...) moral force of advance directives. By putting the personal identity argument in relation to two different normative frameworks, I aim to show that whether or not the personal identity problem is relevant to the moral force of advance directives, and further, in what way it is relevant, depends entirely on what normative reasons we have for respecting advance directives in the first place. (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)

Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a (...) life-threatening illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body. (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)

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)