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)

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)

Due to the rapid changes in the medical world and the aging population, the need for advanced care planning grows. Despite efforts to make this topic discussed, only a minority of patients discusses the advance directive with their general practitioner. This study aimed to map thresholds: What barriers are identified by GPs and patients in preparing and discussing an advance directive? A cross section survey in patients and GP’s was performed. Citizens were recruited by multimedia and (...) by street interviews. GP’s were recruited by mailing. Most of the 502 citizens already heard of an advance directive but only 17 had declared one while 21 never want one. Eighty percent wants to take the initiative themselves but half of the participants wants the GP to be actively involved. Thirty percent finds the document too difficult to understand. The need to draw an advance directive grew with increasing age. Of the 117 GP’s involved, 65% drafted five or less advance directives the past year. A lack of time, experience and a poor access to the correct administrative requirements were only a few of the barriers. Preparing and drafting an advance directive is a time-consuming and difficult procedure. Patients and GP’s have the right to be informed and instructed on how to prepare an advance directive. (shrink)

Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes or whether or not to utilize particular interventions, both of which about most laypersons know little and, (...) more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility—creating a burden for which most patients are unprepared—and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients and physicians for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue—or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity. (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 ...

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better‐informed decisions has led to the development of dementia‐specific advance directives, in which people are given tools to help them communicate what their preferences (...) are while they are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia‐specific directives and addresses some of the criticisms raised about them. (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)

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)

Bioethicists are widely agreed that patients have a right of self-determination over how they are treated. Our duty to respect this is said to be based on the principle of respect for autonomy. In end-of-life care the patient may be incompetent and unable to exercise that right. One solution is to exercise it in advance. Advance directives, which include living wills and powers of attorney for health care, enable people to decide what medical treatment (...) they will receive later, when they become incompetent. Advance directives have been criticized in two general ways. First, many critics contend that advance directives fail on a practical level to effect a patient's autonomous choices because, for example, people cannot foresee their futures well enough to make informed decisions in advance. Second, many critics contend that, practical problems aside, there is no moral authority for exercising control over one's incompetent future self. (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)

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)

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)

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)

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)

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)

BackgroundEverybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet (...) common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD.MethodWe intend to recruit at leastN = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed.DiscussionThe results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD.Trial RegistrationDRKS, DRKS00026691, registered 15th of October 2021,https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691. (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)

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)

BackgroundCurrently, intensive care medicine strives to define a generally accepted way of dealing with end-of-life decisions, therapy limitation and therapy discontinuation.In 2006 a new advance directive legislation was enacted in Austria. Patients may now document their personal views regarding extension of treatment. The aim of this survey was to explore Austrian intensive care physicians' experiences with and their acceptance of the new advance directive legislation two years after enactment (2008).MethodsUnder the aegis of the OEGARI (Austrian Society (...) of Anaesthesiology, Resuscitation and Intensive Care) an anonymised questionnaire was sent to the medical directors of all intensive care units in Austria. The questions focused on the physicians' experiences regarding advance directives and their level of knowledge about the underlying legislation.ResultsThere were 241 questionnaires sent and 139 were turned, which was a response rate of 58%. About one third of the responders reported having had no experience with advance directives and only 9 directors of intensive care units had dealt with more than 10 advance directives in the previous two years. Life-supporting measures, resuscitation, and mechanical ventilation were the predominantly refused therapies, wishes were mainly expressed concerning pain therapy.ConclusionA response rate of almost 60% proves the great interest of intensive care professionals in making patient-oriented end-of-life decisions. However, as long as patients do not make use of their right of co-determination, the enactment of the new law can be considered only a first important step forward. (shrink)

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

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)

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)

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

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 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)

The Texas Advance Directive Act allows physicians and hospitals to overrule patient or family requests for futile care. Purposefully not defining futility, the law leaves its determination in specific cases to an institutional process. While the law has received several criticisms, it does seem to work constructively in the cases that come to the review process. We introduce a new criticism: While the law has been justified by an appeal to professional values such as avoiding harm to patients, (...) avoiding the provision of unseemly care, and good stewardship of medical resources, it is applied incompletely. It allows physicians and institutional committees to refuse “futile” treatments desired by patients and families while at the same time providing no way of regulating physicians who recommend or even push “futile” treatments in similar cases. In this sense, the TADA is incomplete on its own terms. (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)

OBJECTIVES: The subject of patient self-determination in health care has gained broad interest because of the increasing number of incompetent patients. In an attempt to solve the problems related to doctors' decision making in such circumstances, advance directives have been developed. The purpose of this study was to examine relationships between public attitudes towards patient autonomy and advance directives. SUBJECTS AND MAIN OUTCOME MEASURES: A stratified random sample of 600 adults in northern Sweden was surveyed (...) by a questionnaire with a response rate of 78.2%. The subjects were asked about their wish for control of their health care, their concerns about health care, their treatment preferences in a life-threatening situation (both reversible and irreversible), and their attitudes towards the application of advance directives. RESULTS: Numerous relationships between various aspects of self-determination in health care (desire for control, fears of over-treatment, and choice of treatment level) in general and advance directives, in particular, were found. Those who wanted to have a say in their health care (about 94%) also mainly supported the use of an advance directive. CONCLUSIONS: The fact that almost 30% of the respondents were undecided concerning their personal use of advance directives points to a lack of knowledge and to the necessity of education of the public on these issues. (shrink)

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

We examined the management of completed advance directives including why participants completed a document, what procedures and values they chose, with whom they held end-of-life conversations, and where they stored their document. Participants elected to complete a SurveyMonkey survey that was made available to individuals who wrote an advance directive through Texas-LivingWill.org; 491 individuals elected to fill out the survey, aged 19 to 94 years. The survey asked multiple questions about why participants completed an advance directive, (...) where they would store it, and with whom they had conversations about their end-oflife wishes. A list of procedures and values allowed participants to indicate what they refused or requested in their advance directive. Advance directives are most often completed to allow patients to prepare and control the healthcare they wish to receive when dying. One-half to two-thirds of individuals refuse common end-of-life medical procedures, and the rest request the procedures. We found a correlation between the choice to refuse or request a procedure and the age of the participant. Participants reported that their end-of-life conversations most often occurred with their spouse. Respondents often reported that their advance directive was stored with their physician and power of attorney for healthcare, conversations with those individuals rarely happened. Advance directives document patients’ requests for and refusals of end-of-life care. Physicians and surrogates need to be better educated so that the documents are part of a meaningful conversation with the patient. Because patients’ choices change over their lifespan, these documents need to be revisited regularly and not completed as a onetime event. (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)

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)

In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. A self-administered questionnaire (...) was sent via mail to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure. (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: (1) advance directives, and (2) the role of the family in decisions to withhold or withdraw life-support. (shrink)

OBJECTIVES: This study was designed to identify and compare the attitudes of patients and health care professionals towards advance directives. Advance directives promote recognition of the patient's autonomy, letting the individual exercise a certain measure of control over life-sustaining care and treatment in the eventuality of becoming incompetent. DESIGN: Attitudes to advance directives were evaluated using a 44-item self-reported questionnaire. It yields an overall score as well as five factor scores: autonomy, beneficence, (...) justice, external norms, and the affective dimension. SETTING: Health care institutions in the province of Québec, Canada. Survey sample: The sampling consisted of 921 subjects: 123 patients, 167 physicians, 340 nurses and 291 administrators of health care institutions. RESULTS: Although the general attitude of each population was favourable to the expression of autonomy, multivariate analysis of variance (MANOVA) indicated that physicians attached less importance to this subscale than did other populations (p < .001). Above all, they favoured legal external norms and beneficence. Physicians and administrators also attached less importance to the affective dimension than did patients and nurses. Specifically, physicians' attitudes towards advance directives were shown to be less positive than patients' attitudes. CONCLUSION: More attention should be given to the importance of adequately informing patients about advance directives because they may not represent an adequate means for patients to assert their autonomy. (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)

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

This study describes the results of a retrospective review of patients' charts who had an advanced directive (AD) and who were hospitalized in a tertiary, acute care teaching hospital. The purpose of the review was to understand from clinical, sociological, ethical and legal perspectives the nature and utility of ADs. Findings and implications of the review are discussed in terms of: patient demographics; diagnoses; quality of ADs; influence of ADs on clinical decisions; and legal aspects of ADs.

Background In Spain, there has been great effort by lawmakers to put Advance Directives into practice since 2002. At the same time, the field of bioethics has been on the rise, a discipline that has spurred debate on the right of patients to exercise their autonomy. Despite all this, the implementation of ADs can be said to have failed in Spain, because its prevalence is very low, there is a great lack of knowledge about them and they have (...) very little impact on clinical decisions. The purpose of this article is to analyze and discuss the main reasons for the failure of ADs in Spain. Main body The main reasons why ADs have no impact on clinical practice in Spain have been fundamentally four: the training of health professionals about the end of life and AD is lacking; there has been no public process to increase awareness about AD, and therefore people know little about them; the bureaucratic procedure to document and implement ADs is excessively complex and cumbersome, creating a significant barrier to their application; in Spain, the remnants of a paternalistic medical culture continue to exist, which causes shared decision-making to be difficult. Conclusion Due to the four reasons mentioned above, AD have not been a useful tool to help honor patients’ autonomous decisions about their future care and, therefore, they have not achieved their objective. However, despite the difficulties and problems identified, it has also been observed that health care professionals and the Spanish public have a very positive view of AD. Having identified the problems which have kept AD from being successful, strategies must be developed to help improve their implementation into the future. (shrink)

Background In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. Method A (...) self-administered questionnaire was sent via mail to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. Results Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. Conclusions Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure. (shrink)

Advance directives (ADs) are assumed to reflect the patients’ preferences, even if these are not clearly expressed. Research into whether this assumption is correct has been lacking. This study explores to what extent ADs reflect the true wishes of the signatories.

It is unknown whether hospital-based medical professionals in Spain educate patients about advance directives. The objective of this research was to determine the frequency of hospital-based physicians’ and nurses’ engagement in AD discussions in the hospital and which patient populations merit such efforts. A short question-and-answer-based survey of physicians and nurses taking care of inpatients was conducted at a university hospital in Madrid, Spain. In total, 283 surveys were collected from medical professionals, of whom 71 (...) per cent were female, with an average age of thirty-four years. Eighty-four per cent had never educated patients about ADs because of lack of perceived responsibility, time, or general knowledge of ADs. Patient populations that warranted AD discussions included those with terminal illnesses, chronic diseases, and elderly patients. Regarding degree of AD understanding in medical professionals: 57 per cent of medical professionals claimed sufficient general knowledge of ADs, 19 per cent understood particulars regarding AD document creation, and 16 per cent were aware of AD regulatory policies. Engagement in AD discussions was considered important by 83 per cent of medical professionals, with 79 per cent interested in participating in such discussions themselves. The majority of hospital physicians and nurses do not educate their patients about ADs, despite acknowledging their importance. Patient populations of highest priority included those with terminal diseases or chronic illness or who are of advanced age. (shrink)

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

Advance directives are written documents that give patients the opportunity to communicate their preferences regarding treatments they do or do not want to receive in case they become unable to make decisions. Commonly used pre-printed forms have different formats. Some offer space for patients to appoint a surrogate decision maker, and/or to determine future medical treatments and/or give a statement of personal values. So far it is unknown which forms GPs preferably use and why they decide to (...) do so. 23 semi-structured interviews with GPs were analysed using content analysis. Interviewees mainly use short templates and medium length templates with checkboxes to indicate patients’ preferences in regards to life prolonging measures. Especially when patients faced the progression of a disease, participants use the latter version. Only then, the interviewees remarked, patients are capable to rate concrete situations reliably. GPs also realize the importance of the verbal assessment of patients’ preferences; however they rarely keep a written form of the conversation. Some GPs hand out one or more templates and ask their patients to read and think about them at home with the option to talk to them about it later on, while others prefer their patients to fill them out alone at home. Regardless of template usage, most GPs emphasize that ADs require regular updates. GPs tend to see standardized advance directives mainly as a tool to start a conversation with their patients and to identify their real preferences and values. When the patient is still not facing the progression of an already existing disease it could be sufficient to only appoint a surrogate decision maker instead of creating a full AD. However, in all other situations, appointing a surrogate decision maker should be backed up by a written statement of a patient’s general values. Patients and their relatives should always have the opportunity to ask their GP for medical advice when drafting an AD. It is crucial to regularly verify and update existing ADs within the course of a disease. (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)

Numerous studies have shown almost uniformly positive opinions among patients and physicians regarding theconceptof advance directives (either a healthcare proxy or living will). Several of these studies have also shown that the actual use of advance directives is significantly lower than this enthusiasm would suggest, but they have not explained the apparent discordance. Nor have researchers explained why members of minority groups are much less likely to complete advance directives than are white patients. In (...) this study, we used a focus group methodology to examine the ways in which diverse populations of patients view the medical, philosophical, and practical issues surrounding advance directives. We were motivated by the significantly lower prevalence of advance directives among African-American and Hispanic patients at one urban teaching hospital (18% for Caucasians, 4% for African-Americans, and 2% for Hispanics). Our premise was that African-American and Hispanic populations, who have had higher rates of morbidity and mortality across numerous disease categories, and historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right of autonomy that an advance directive is designed to ensure. (shrink)

Persons infected with the Human Immunodeficiency Virus often experience intermittent life-threatening infections, a progressive decrease in cognitive abilities, and a loss of capacity to communicate their wishes to their family and medical care providers. Accordingly, AIDS patients are among those most likely to benefit from the increased availability of legally recognized forms of advance care planning. Although the three countries examined in this article differ greatly in the prevalence of HIV infection, the legal status of (...) class='Hi'>advance directives, and in the attitudes toward their use, a collection of case studies is used to demonstrate that an ability to address the specific needs, values and goals of individual patients is promoted by the availability of a variety of options for implementing advance directives or health care proxies. The conclusion of the analysis is that the best option in a specific context will depend upon differences in individual values and medical objectives of the sort discussed in the case studies. Das mit der HIV-Infektion verbundene Krankheitsbild ist durch wechselnde lebensbedrohliche Infektionen und den fortschreitenden Verfall kognitiver Fähigkeiten gekennzeichnet. Es führt zudem häufig zum Verlust der Möglichkeit, Behandlungswünsche gegenüber Ärzten und Angehörigen zu äußern. Deshalb gehören besonders AIDS-Patienten zu denjenigen, die von rechtlich anerkannten vorsorglichen Patientenverfügungen profitieren werden.In diesem Artikel werden drei Länder betrachtet, die sich hinsichtlich der Häufigkeit des Auftretens der HIV-Infektion sowie des rechtlichen Status von und der Einstellung zu Patientenverfügungen erheblich unterscheiden. Fallstudien belegen allerdings, daß nicht allein die kulturellen und sozialen Bedingungen für die jeweils beste Form der Patientenverfügung ausschlaggebend sind. Voraussetzung für die Möglichkeit, den Bedingungen, Wert- und Zielvorstellungen des individuellen Patienten zu entsprechen, ist auf jeden Fall die Verfügbarkeit unterschiedlicher Formen von Patienten- und Betreuungsverfügungen. Auch innerhalb eines Kulturkreises müssen daher verschiedene Formen vorsorglicher Willensäußerungen des Patienten rechtlich anerkannt werden. Welche Art von Verfügung jeweils die beste Option darstellt, ist dabei abhängig von medizinischen Bedingungen und persönlichen Wertvorstellungen, wie sie in den Fallstudien diskutiert werden. (shrink)