This code of practice for health professionals was prepared by a multi-professional group and reflects good clinical practice in encouraging dialogue about individuals' wishes concerning their future treatment. It has a broad practical approach, considers a range of advance statements, advises of dangers and benefits of making treatment decisions in advance and combines annotated code of practice with a quick pull out guide for easy reference.

Advance directives are specific competent consumers’ wishes about future medical plans in the event that they become incompetent. Awareness of a patient’s autonomy particularly, in relation to their right to refuse or withdraw treatment, a right for the patient to die from natural causes and interest in end of life issues were among the main reasons for developing and legalizing advance medical directives in developed countries. However, in many circumstances cultural and religious aspects are (...) among many factors that can hamper implementation of advance directives. Islam and Muslims in general have a good understanding of death and dying. Islam allows the withholding or withdrawal of treatments in some cases where the intervention is considered futile. However, there is lack of literature and debate about such issues from an Islamic point of view. This article provides the Islamic perspective with regards to advance medical directive with the hope that it will generate more thoughts and evoke further discussion on this important topic. (shrink)

Authorising euthanasia and assisted suicide with advance euthanasia directives is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer’s disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since the 2002 Dutch (...) euthanasia law was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs. (shrink)

The fourth amendment to the German Medicinal Products Act (Arzneimittelgesetz) states that nontherapeutic research in incompetent populations is permissible under the condition that potential research participants expressly declare their wish to participate in scientific research in an advance research directive. This article explores the implementation of advance research directives in Germany against the background of the international legal and ethical framework for biomedical research. In particular, it addresses a practical problem that arises from the disclosure requirement for (...) advance research directives. We show that, if the disclosure standard for advance research directives is set at a token level, nontherapeutic research in incompetent populations becomes practically impossible. To resolve this issue, we suggest the disclosure standard be set at a type level. (shrink)

Background: Advance healthcare decision-making presumes that a prior treatment preference expressed with sufficient mental capacity ("T1 preference") should trump a contrary preference expressed after significant cognitive decline ("T2 preference"). This assumption is much debated in normative bioethics, but little is known about lay judgments in this domain. This study investigated participants' judgments about which preference should be followed, and whether these judgments differed depending on a first-person (deciding for one's future self) versus third-person (deciding for a friend or stranger) (...) perspective. (shrink)

In a recent Dutch euthanasia case, a woman underwent euthanasia on the basis of an advance directive, having first been sedated without her knowledge and then restrained by members of her family while the euthanasia was administered. This article considers some implications of the criminal court’s acquittal of the doctor who performed the euthanasia. Supporters of advance euthanasia directives have welcomed the judgement as providing a clarification of the law, especially with regard to the admissibility of contextual (...) evidence in interpreting advance euthanasia directives, but suggested that the law regarding advance euthanasia directives should be further relaxed to remove the requirement of current suffering and that an unfortunate consequence of the prosecution is that it is likely to deter doctors from performing euthanasia even in more straightforward cases. This article argues that the court’s endorsement of the use of contextual evidence is problematic, that the case for prioritising prior decisions over current interests has not been advanced by the discussion surrounding this case and that worries about the alleged deterrent effect are not well founded. (shrink)

BackgroundAdvance research directives (ARD) have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). The introduction of ARDs could thus establish a double standard in the sense that within (...) the context of ARDs, type disclosure would be considered sufficient, while beyond this context, token disclosure would remain necessary.Main bodyThis paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include type disclosure can be acceptable under suitable circumstances. Such an approach raises a number of objections. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach.ConclusionThe approach presented in this paper avoids introducing a double standard. It is, therefore, more suitable for the implementation of ARDs than established approaches. (shrink)

BackgroundJunior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors’ decision-making processes when treating people with dementia who have advance care directives, or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: their legal compliance and decision-making process related to treatment decisions; the factors influencing their clinical decision-making; (...) and the factors associated with accurate responses to one hypothetical vignette. MethodA cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: bacterial pneumonia; or suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette.ResultsOverall, 116 junior doctors responded. In Vignette 1, 58% of respondents selected the legally compliant option. Participants who chose the legally compliant option perceived ‘following patient wishes’ and ‘legal requirements to follow ACDs’ as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the ‘ACD is relevant in my decision-making process, but other factors are more relevant’. In Vignette 2, 72% of respondents indicated they would commence treatment and 18% selected they would not commence treatment.. Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario.ConclusionsThere are critical gaps in junior doctors’ compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors’ clinical decision-making and ensure compliance with the law is required. (shrink)

Advance care directives for health care have been promoted as a way to improve end-of-life decision making. These documents allow a patient to state, in advance of incapacity, the types of medical treatments they would like to receive, to name a surrogate to make those decisions, or to do both. Although studies have shown that both physicians and patients generally have positive attitudes about the use of these documents, relatively few individuals have actually completed one.What underlies (...) this discrepancy between attitudes and behavior with regard to advance care directives? One obvious explanation is lack of access. Emanuel et al. estimated that approximately 90 percent of the population desire an advance care directive, and they pointed to access as the major barrier. Yet interventions that increase accessibility have typically failed to yield more than a 20 percent completion rate. Thus, it appears that access is not the sole determinant of advance care directive completion. (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)

Attorneys regularly prepare advance healthcare directives for their clients. However, attorneys, lacking medical knowledge, are often considered ill-equipped to prepare such documents. While recognizing and respecting the fact that advance healthcare directives pertain to decisions about medical care, this article proposes that attorneys who prepare advance healthcare directives nevertheless provide a valuable service.

BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an AED (...) or were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (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)

ObjectivesTo investigate which of two sources of information about an older adult’s wishes—choices made in an advance directive or proxy’s opinion—provides better insight into the older adult’s preferences measured in hypothetical clinical situations involving decisional incapacity.MethodsSecondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express (...) healthcare preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult’s answers in each of the seven scenarios.ResultsEighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies’ guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios.ConclusionsFindings suggest that a directive might provide better insight into a person’s wishes than the person’s proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own.Trial registration numberISRCTN89993391; Post-results. (shrink)

Out of 288 Hong Kong cancer patients, 92.3% include themselves in decision-making, 71% prefer joint decision-making: with family, with doctor, with doctor plus family, with family minus doctor, and with doctor minus family. <5% want decision-making by “doctor-alone” and <1% desire decision-making by “family-alone”. Harmony, communication and responsibility are reasons for family participation. Most patients prefer “specialist” for information, followed by “family”, “friends”, and “GP”. Trust in doctors and prospects for controlling/curing disease are important factors in decision-making. Patients want to (...) participate and be listened to rather than make decisions. Doctors should not disclose information to family without patients’ permission, nor withhold information from patient [End Page 109] on family’s request. Only 25% of patients have discussed post-competent treatment with others and 7% have heard of Advance Directive ; 24% refuse to discuss it. After AD has been explained to them, 66% remain reluctant to sign one, preferring to leave oral instructions or appoint family as proxy decision-makers. The family’s decision-making role increases when patients become incompetent. The top reason for signing AD is to receive preferred post-competent treatments, and for not signing it, difficulty with making a prospective decision. The implications of these findings will be discussed. (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)

This volume gives an overview on the currently debated ethical issues regarding advance directives from an international perspective. It focuses on a wider understanding of the known and widely accepted concept of patient self-determination for future situations. Although advance directives have been widely discussed since the 1980s, the ethical bases of advance directives still remain a matter of heated debates. The book aims to contribute to these controversial debates by integrating fundamental ethical issues on (...) advance directives with practical matters of their implementation. Cultural, national and professional differences in how advance directives are understood by health care professions and by patients, as well as in laws and regulations, are pinpointed. (shrink)

While still developing in Germany, a consensus has emerged in the United States on the use of advance directives for guiding future medical decision making. This article outlines three phases in the evolution of advance directive forms—the legal phase, the checklist phase, and the story phase. The story-based approach is discussed as the best method for assessing patient values and incorporating them into advance directives, and a story-based advance directive form, which has been (...) developed and tested during the past two years, is presented. (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)

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)

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)

When medical assistance in dying (MAiD) was legalized in Canada in June 2016, the question of allowing decisionally capable persons to make advance requests in anticipation of later incapacity was reserved for further consideration during the mandatory parliamentary review originally scheduled to begin in June 2020 (but since delayed by COVID-19). In its current form the legislation does not permit such requests, since it stipulates that at the time at which the procedure is to be administered the patient (...) must give “express consent” to receiving it. Since express consent presupposes decisional capacity, this requirement rules out administering MAiD to a patient who has lost capacity. Amendments to the legislation passed by Parliament in March 2021 open the door slightly by allowing advance requests by patients after they have been approved for MAiD, if they fear losing capacity before the procedure can be administered. But this provision would apply only to patients whose natural death was deemed to be “reasonably foreseeable”, and would continue to exclude (a) requests made after diagnosis of a “grievous and irremediable medical condition” but in advance of approval for MAiD, and (b) requests made before such a diagnosis. My aim in this paper is twofold: to explore the ethical and legal issues concerning advance requests for MAiD, and to argue for expanding provision for such requests to include both of these further scenarios. (shrink)

By issuing an advance treatment directive, an autonomous person can formally express what kinds of treatment she wishes and does not wish to receive in case she becomes ill or injured and unable to autonomously decide about her treatment. While many jurisdictions and medical associations endorse them, advance treatment directives have also been criticized. According to an important criticism, when a person irreversibly loses her autonomy what she formerly autonomously desired ceases to be of importance in (...) deciding about her treatment. The medical ethical debate regarding different possible ways of solving the problem on which the criticism is based has grown exceedingly intricate. Instead of assessing the developments made in the debate so far, I present a thought experiment—built around a suicide case—which suggests that the problem is not as intractable as it has generally been deemed to be. (shrink)

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

In the first part of this article, we considered how Thandi, a 15-year-old girl, was treated when taken by her mother to their GP, Dr Randera. Dr Randera notified them that Thandi was pregnant, HIV positive, and had syphilis and herpes. Dr Randera also informed them that there was a substantial risk that the baby would be born HIV positive. Both Thandi and her mother wanted an abortion. However, Dr Randera, who was morally opposed to abortions, refused to provide the (...) service and did not refer Thandi to another doctor who would perform the abortion.The saga continues:. (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)

Background The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD. Methods A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients (...) with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD. Results Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a “person of trust” would be more appropriate than utilizing AD. Conclusion Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD. (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.

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 (...) class='Hi'>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)

Objectives: After years of public discussion too little is still known about willingness to accept the idea of writing an advance directive among various groups of people in EU countries. We investigated knowledge about and willingness to accept such a directive in cancer patients, healthy controls, physicians, and nursing staff in Germany.Methods: Cancer patients, healthy controls, nursing staff, and physicians were surveyed by means of a structured questionnaire.Results: Only 18% and 19% of the patients and healthy controls respectively, and (...) 10% of the medical staff had written an advance directive. However, 50–81% of those surveyed indicated that they wished to write one. This intention was associated with deteriorating health . Only 29% of the healthy controls and 43% of the patients knew about the possibility of appointing a health care proxy. A majority in all groups believed that advance directives may influence the course of treatment , yet half of those surveyed in all groups fear that patients could be pressurised into writing an advance directive, and 38–65% thought that relatives could abuse such documents.Conclusions: Only a minority of the participants had written an advance directive and knew about the possibility of authorising a health care proxy. Deteriorating health was associated with increasing willingness to make a directive. Despite a majority belief that advance directives may influence treatment at the end of life, other factors limit their employment, such as fear of abuse. (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)

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)

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)

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)

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)

This book offers a new perspective on advance directives through a combined legal, ethical and philosophical inquiry. In addition to making a significant and novel theoretical contribution to the field, the book has an interdisciplinary and international appeal. The book will help academics, healthcare professionals, legal practitioners and the educated reader to understand the challenges of creating and implementing advance directives, anticipate clinical realities, and preparing advance directives that reflect a higher degree of assurance (...) in terms of implementation. (shrink)

ABSTRACTI consider objections to the use of living wills based upon the discontinuity of personal identity between the time of the execution of the directive anbd the time the person becomes incompetent. Recent authors, following Derek Parfit's “Complex View” of personal identity, have argued that there is often not sufficient identity interests between the competent person who executes the living will and the incompetent patient to warrant the use of the advance directive. I argue that such critics err by (...) seeking personal identity in a purely descriptive manner. By exploring Buchanan and Brock's concept of “surviving interests”, an argument is developed that certain future‐oriented acts have a normative force that contributes to the narrative unity which is constitutive of personal ideality. This narrative concept of the self is entailed by many of the our ordinary practices and challenges the philosophical consensus to view the self in a more dynamic and communitarian manner. (shrink)

This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, (...) a study was designed to examine health professionals’ understanding and preferences related to advance directives. In addition, the study sought to explore the views of health care professionals of the application of Advance Directives in clinical practice in Lithuania. A cross-sectional survey was conducted by interviewing 478 health professionals based at major health care centers in Kaunas district, Lithuania. The design of the study included the use of a questionnaire developed for this study and validated by a pilot study. The collected data were analyzed using standard descriptive statistical methods. The analysis of knowledge about AD revealed some statistically significant differences when comparing the respondents’ profession and gender. The analysis also indicated key emerging themes among respondents including tranquility of mind, the longest possible life expectancy and freedom of choice. Further, the study findings revealed that more than half of the study participants preferred to express their will while alive by using advance directives. The study findings revealed a low level of knowledge on advance directives among health professionals. Most health professionals agreed that AD’s improved end-of-life decision making while the majority of physicians appreciated AD as the best tool for sharing responsibilities in clinical practice in Lithuania. More physicians than nurses preferred the presence of advance directives to support their decision making in end-of-life situations. (shrink)

In New Zealand an advance directive can be either an oral statement or a written document. Such directives give individuals the opportunity to make choices about future medical treatment in the event they are cognitively impaired or otherwise unable to make their preferences known. All consumers of health care have the right to make an advance directive in accordance with the common law. When we consider New Zealand's rapidly ageing population, the fact that more people now (...) live with and die of chronic rather than acute conditions, the importance given to respecting autonomous decision-making, increasing numbers of individuals who require long-term residential care, and financial pressures in the allocation of medical resources, there would seem to be a number of compelling reasons to encourage individuals to write or verbalise an advance directive. Indeed the promotion of advance directives is encouraged. However, caution should be exercised in promoting advance directives to older people, especially in light of several factors: ageist attitudes and stereotypes towards them, challenges in the primary healthcare setting, and the way in which advance directives are currently focused and formulated. This paper considers some of the specific challenges that need to be addressed if the promotion of advance directives are to improve outcomes of patient treatment and care near the end of life. (shrink)

Several studies have explored differences between North American and European doctor patient relationships. They have focused primarily on differences in philosophical traditions and historic and socioeconomic factors between these two regions that might lead to differences in behaviour, as well as divergent concepts in and justifications of medical practice. However, few empirical intercultural studies have been carried out to identify in practice these cultural differences. This lack of standard comparative empirical studies led us to compare differences between France and (...) the USA regarding end-of-life decision-making. We tested certain assertions put forward by bioethicists concerning the impact of culture on the acceptance of advance directives in such decisions. In particular, we compared North American and French intensive care professional's attitudes toward: advance directives, and the role of the family in decisions to withhold or withdraw life-support. (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 (...) class='Hi'>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)

By providing an interdisciplinary reading of advance directives regulation in international, European and domestic law, this book offers new insights into the most controversial legal issues surrounding the debate over dignity and autonomy ...

Several studies have explored differences between North American and European doctor patient relationships. They have focused primarily on differences in philosophical traditions and historic and socioeconomic factors between these two regions that might lead to differences in behaviour, as well as divergent concepts in and justifications of medical practice. However, few empirical intercultural studies have been carried out to identify in practice these cultural differences. This lack of standard comparative empirical studies led us to compare differences between France and (...) the USA regarding end-of-life decision-making. We tested certain assertions put forward by bioethicists concerning the impact of culture on the acceptance of advance directives in such decisions. In particular, we compared North American and French intensive care professional's attitudes toward: (1) advance directives, and (2) the role of the family in decisions to withhold or withdraw life-support. (shrink)

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)

This article evaluates the potential role of advance directives outside of their original North American context. In order to do this, the article first analyses the historical process which has promoted advance directives in recent years. Next, it brings to light certain presuppositions which have given them force: atomistic individualism, contractualism, consumerism and entrepreneurialism, pluralism, proceduralism, and American moralism. The article next studies certain European cultural peculiarities which could affect advance directives: the importance of (...) virtue versus rights, stoicism versus consumerist utilitarianism, rationalism versus empiricism, statism versus citizens' initiative, and justice versus autonomy.The article concludes by recognising that autonomy has a transcultural value, although it must be balanced with other principles. Advance Directives can have a function in certain cases. But it does not seem adequate to delegate to advance directives more and more medical decisions, and to make them more binding everyday. It is indispensable to develop other decision-making criteria. (shrink)

This article evaluates the potential role of advance directives outside of their original North American context. In order to do this, the article first analyses the historical process which has promoted advance directives in recent years. Next, it brings to light certain presuppositions which have given them force: atomistic individualism, contractualism, consumerism and entrepreneurialism, pluralism, proceduralism, and “American moralism.” The article next studies certain European cultural peculiarities which could affect advance directives: the importance of (...) virtue versus rights, stoicism versus consumerist utilitarianism, rationalism versus empiricism, statism versus citizens' initiative, and justice versus autonomy.The article concludes by recognising that autonomy has a transcultural value, although it must be balanced with other principles. Advance Directives can have a function in certain cases. But it does not seem adequate to delegate to advance directives more and more medical decisions, and to make them more binding everyday. It is indispensable to develop other decision-making criteria. (shrink)