Should advance directives (ADs) such as living wills be employed to direct the care of the severely demented? In considering this question, I focus primarily on the claims of Rebecca Dresser who objects in principle to the use of ADs in this context. Dresser has persuasively argued that ADs are both theoretically incoherent and ethically dangerous. She proceeds to advocate a Best Interest Standard as the best way for deciding when and how the demented ought to (...) be treated. I put forth a compromise position: both ADs and the Best Interest Standard have roles to play in guiding the care of the severely demented. (shrink)

In this commentary, I critique three aspects of Emily Walsh's proposal to reduce the moral and legal weight of advance directives: (1) the ambiguity of its initial thesis, (2) its views about the ethics and legality of clinical practice, and (3) its interpretation and application of Ronald Dworkin’s account of advance directives and L.A. Paul's view on transformative experience. I also consider what Walsh’s proposal would mean for people facing the prospect of dementia. I conclude that (...) our reasons to honor many advance directives survive the move to a transformative experience framework. (shrink)

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 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)

The doctor-patient relationship has evolved to respect “the autonomy and patients’ rights”. One of the cornerstones in such autonomy is the opportunity for patients to draw living wills, also known as advance directives. However, information about AD available to patients remains scarce largely due to the lack of involvement of General practitioners for several reasons. The aim of our study was to evaluate current general practitioner residents’ behavior concerning their role in informing their patients about AD. (...) We built a French nationwide survey from GPR class of 2012 to 2014. Two thousand three hundred ten residents completed our survey. 89.8% declared their willingness to offer patients the opportunity of writing AD. When asked about the usefulness of AD, 73.6% of residents responded that these are a suitable help for patients, but 19.7% considered that AD are essentially geared towards frail patients. Among residents who want to inform patients about AD, 14.7% wanted to involve all patients. Only 20.5% thought that elderly people should be systematically informed about AD. When the question involves other frail people in various disease areas, information seems relevant for 60.1% of GPR considering patient with cancer or malignant hematologic disease and for 56.2% about patients affected by neurodegenerative disease. When considering the routine use of AD, 20.5% of GPR would take them into account only if they are in agreement with the patient’s decision. The results of the survey indicate that GPR would rather choose to decide who should be informed about AD, and when to take AD into account for ethical concerns. (shrink)

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

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

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)

In the literature three mechanisms are commonly distinguished to make decisions about the care of incompetent patients: A living will, a substituted judgment by a surrogate (who may or may not hold the power of attorney ), and a best interest judgment. Almost universally, the third mechanism is deemed the worst possible of the three, to be invoked only when the former two are unavailable. In this article, I argue in favor of best interest judgments. The evermore common aversion (...) of best interest judgments entails a risk that health care providers withdraw from the decision-making process, abandoning patients (or their family members) to these most difficult of decisions about life and death. My approach in this article is primarily negative, that is, I criticize the alleged superiority of the living will and substituted judgment. The latter two mechanisms gain their alleged superiority because they are supposedly morally neutral, whereas the best interest judgment entails a value judgment on behalf of the patient. I argue that on closer inspection living wills and substituted judgments are not morally neutral; indeed, they generally rely on best interest judgments, even if those are not made explicit. (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)

Advance directives are useful ways to express one's wishes about end of life care, but even now most people have not completed one of the documents. David Doukas and William Reichel strongly encourage planning for end of life care. Although Planning for Uncertainty is at times fairly abstract for the general reader, it does provide useful background and practical steps.

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

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)

In the last decade the use of advance directives or living wills has become increasingly common. This paper is concerned with those advance directives in which the user opts for withdrawal of active treatment in a future situation where he or she is incompetent to consent to conservative management but where that incompetence is potentially reversible. This type of directive assumes that the individual is able accurately to determine the type of treatment he or (...) she would have adopted had he or she been competent in this future scenario. The paper argues that this assumption is flawed and provides theoretical and empirical evidence for this. If the assumption is false, and those taking out advance directives do not realise this, then the ethical bases for the use of these advance directives-the maximisation of the individual's autonomy and minimisation of harm-are undermined. The paper concludes that this form of advance directive should be abolished. (shrink)

Defenders of patient autonomy have successfully supported the legal adoption of advance directives. More recently, some defenders of patient autonomy have also supported the legalization of voluntary active euthanasia. This paper explores the wisdom of combining both practices. If euthanasia were to become legal, should it be permitted by advance directives? The paper juxtaposes the most significant doubts about advance directives, with the most significant doubts about euthanasia. It argues that the doubts together raise (...) more concern about the combined practices than about either euthanasia or advance directives separately. Not all cases of voluntary euthanasia by advance directive are equally problematic, however. Advance directives can help in the defense of euthanasia for patients who make the request in advance and reaffirm it under circumstances of severe suffering. Keywords: advance directives, durable power of attorney, euthanasia, living will, patient interests CiteULike Connotea Del.icio.us What's this? (shrink)

Advance directives such as living wills are attractive in that they give us a sense of control over our futures. But they also tend to obscure conflicts between a patient's competent wishes and later, incompetent interests. They allow caregivers to avoid evaluating quality of life in assessing the best interests of incompetent patients.

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, (...) even though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician–patient–family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached. (shrink)

Advanced directives and living wills have improved our ability to dictate end-of-life care, but even these cannot guarantee that we will be allowed the dignity of a natural death. Designed by two sisters-one a doctor, one a lawyer-and drawing on their decades of experience, the five-step Compassion Protocol outlined in A Better Way of Dying offers a simple and effective framework for leaving caretakers concrete, unambiguous, and legally binding instructions about your wishes for your last days. Meant (...) for people in every walk of life-from the elderly, to those in the early stages of mentally degenerative diseases like Alzheimer's, to healthy young people planning for an unpredictable future-this book creates space for a discussion we all must have if we wish to ensure comfort and control at the end of our lives.." -- from publisher's website. (shrink)

Context: A growing number of Japanese people have completed advance directives, especially living wills, even though there is no legislation recognising such documents and little empirical research on their impact on clinical care at the end of life in Japan.Objectives: To investigate physicians’ attitudes about living wills and their experiences with patients who had completed a living will and later died.Design: Self administered survey and qualitative study using open question and content analysis.Setting: Japan.Participants: (...) Physicians known to have cared for a patient who had presented a living will prior to death.Measurements: The physician’s response to receiving a living will, communication about the living will, the impact of the living will on clinical care, demographics, and their opinion on advance directives, especially living wills.Main results: Fifty five per cent of respondents approved of advance directives in general, and 34% had more opportunities to communicate with a patient and his/her family after receiving the living will. Sixty nine per cent of the physicians who received a living will did not, however, change their course of therapy as a consequence of receiving the living wills. Based on the analysis, we identified three areas of concern in the comments on living wills: concerns relative to patients, physicians, and families; social context, and clinical and administrative concerns. The physicians raised various topics for discussion; they tended to describe the issues from a clinical perspective.Conclusions: Our identified areas of concern should prove helpful in better understanding the clinical and ethical implications of living wills in Japan. (shrink)

Advance directives are useful ways to express one's wishes about end of life care, but even now most people have not completed one of the documents. David Doukas and William Reichel strongly encourage planning for end of life care. Although Planning for Uncertainty is at times fairly abstract for the general reader, it does provide useful background and practical steps.

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)

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)

Background Following passage of the Patient Self Determination Act in 1990, health care institutions that receive Medicare and Medicaid funding are required to inform patients of their right to make their health care preferences known through execution of a living will and/or to appoint a surrogate-decision maker. We evaluated the impact of external factors and perceived patient preferences on physicians’ decisions to honor or forgo previously established advance directives (ADs). In addition, physician views regarding legal risk, patients’ (...) ability to comprehend complexities involved with their care, and impact of medical costs related to end-of-life care decisions were explored. Methods Attendees of two Mayo Clinic continuing medical education courses were surveyed. Three scenarios based in part on previously court-litigated matters assessed impact of external factors and perceived patient preferences on physician compliance with patient-articulated wishes regarding resuscitation. General questions measured respondents’ perception of legal risk, concerns over patient knowledge of idiosyncrasies involved with their care, and impact medical costs may have on compliance with patient preferences. Responses indicating strength of agreement or disagreement with statements were treated as ordinal data and analyzed using the Cochran Armitage trend test. Results Three hundred eighty-eight of 951 surveys were completed (41% response rate). Eighty percent reported they were likely to honor a patient’s AD despite its 5 year age. Fewer than half (41%) would honor the AD of a patient in ventricular fibrillation who had expressed a desire to “pass away in peace.” Few (17%) would forgo an AD following a family’s request for continued resuscitative treatment. A majority (52%) considered risk of liability to be lower when maintaining someone alive against their wishes than mistakenly failing to provide resuscitative efforts. A large percentage (74%) disagreed that patients could not appreciate complexities surrounding their care while 69% agreed that costs should never impact a physician’s decision as to whether to comply with a patient’s AD. Conclusions Our findings highlight the impact, albeit small, external factors have on physician AD compliance. Most respondents based their decision on the clinical situation at hand and interpretation of the patient’s initial wishes and preferences expressed by the AD. (shrink)

The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example of this (...) discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive. (shrink)

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)

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)

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

In the face of mounting criticism against advance directives, we describe how a novel, computer-based decision aid addresses some of these important concerns. This decision aid, Making Your Wishes Known: Planning Your Medical Future , translates an individual's values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by (1) educating users about advance care planning; (2) helping individuals (...) identify, clarify, and prioritize factors that influence their decision-making about future medical conditions; (3) explaining common end-of-life medical conditions and life-sustaining treatment; (4) helping users articulate a coherent set of wishes with regard to advance care planning—in the form of an advance directive readily interpretable by physicians; and (5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and health care providers in discussions about advance care planning. (shrink)

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

In April 2002 a new law regarding euthanasia came into effect in the Netherlands. This law holds that euthanasia remains a criminal offence unless it is performed by a physician who acts according to six specified rules of due care and reports the case to a review committee. The six rules of due care are similar to those of the previous regulation and are largely based on jurisprudence. Completely new, however, is the article concerning a competent patient who has written (...) an advance directive requesting euthanasia under certain circumstances. The law stipulates that a physician may act according to that written request, as long as he or she fulfils all other rules of due care. The author defends the view that these requests are neither feasible nor ethically justifiable, and presents both moral and practical arguments for this, claiming that for consistency reasons one cannot act on the basis of a written statement and fulfil the other rules of due care at the same time. The author also examines a difficult case of a demented, severely depressed woman who had written a living will requesting euthanasia before she became demented. (shrink)

Background: The Albanian medical system and Albanian health legislation have adopted a paternalistic position with regard to individual decision making. This reflects the practices of a not-so-remote past when state-run facilities and a totalitarian philosophy of medical care were politically imposed. Because of this history, advance directives concerning treatment refusal and do-not-resuscitate decisions are still extremely uncommon in Albania. Medical teams cannot abstain from intervening even when the patient explicitly and repeatedly solicits therapeutic abstinence. The Albanian law on (...) health care has no provisions regarding limits or withdrawal of treatment. This restricts the individual's healthcare choices.DiscussionThe question of 'medically futile' interventions and pointless life-prolonging treatment has been discussed by several authors. Dutch physicians call such interventions 'medisch zinloos' (senseless), and the Netherlands, as one of the first states to legislate on end-of-life situations, actually regulates such issues through appropriate laws. In contrast, leaving an 'advance directive' is not a viable option for Albanian ailing individuals of advanced age. Verbal requests are provided during periods of mental competence, but unfortunately such instructions are rarely taken seriously, and none of them has ever been upheld in a legal or other official forum.SummaryEnd-of-life decisions, treatment refusal and do-not-resuscitate policies are hazardous options in Albania, from the legal point of view. Complying with them involves significant risk on the part of the physician. Culturally, the application of such instructions is influenced from a mixture of religious beliefs, death coping-behaviors and an immense confusion concerning the role of proxies as decision-makers. Nevertheless, Albanian tradition is familiar with the notion of 'amanet', a sort of living will that mainly deals the property and inheritance issues. Such living wills, verbally transmitted, may in certain cases include advance directives regarding end-of-life decisions of the patient including refusal or termination of futile medical treatments. Since these living wills are never formally and legally validated, their application is impossible and treatment refusal remains still non practicable. Tricks to avoid institutional treatment under desperate conditions are used, aiming to provide legal coverage for medical teams and relatives that in extreme situations comply with the advice of withholding senseless treatment. (shrink)

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

"Since at least 1980 Godard’s cinema has been explicitly looking for (its) music, as if for its outside. In Sauve qui peut (la vie) Paul Godard hears, and asks about it, coming through the hotel room wall, and it follows him down to the lobby, but remains “off,” like Marguerite Duras’s voice, in spite of his questions, until the final sequence. At that moment, at the end of the section entitled “Music,” the protagonist is at the same time struck by (...) a car and struck by the entrance of the music into the diegetic present of the film, as the camera pans past an orchestra playing on the sidewalk while Paul fades off under the quizzical gaze of his daughter. By 2004, with Notre musique , it would seem to have taken over the whole text, for the film was announced as being about the collaboration between Godard and German record label ECM. In the context of that film it is difficult to determine both what that music is and who we are, although this discussion will try to advance a hypothesis in that regard. In fact, my main contention will be that music in Godard’s films functions as something like the absent image ( s ), not those it has lost but rather its cinema to come, what remains to be discovered and live within it, the survival of it. Not a cinema that cannot be seen, rather the image that can perhaps only be heard; and not the romantic or psychedelic dream of a synaesthetic apotheosis either, rather the technological coincidence of sonimage that has also been the precise direction of Godard’s cinematic research for more than thirty years. For the argument I will be making here is inscribed within my own investigation of what I call “technological life,” the means by which, in “prosthetic” symbiosis, or “dorsal” umbrality, a form lives beyond the simplistic opposition of animate and inanimate, or against the reductive presuppositions of autokinetic ipseity...". (shrink)

Historically, the sociology of emotion has been relatively long on theory and short on methods. This collection of articles seeks to remedy this by introducing new ways to capture the four factors of emotion, as articulated by Thoits (1989): meaning, expression, label, and physiology. As a group, these studies reify existing dichotomies in the literature—that is, emotional experience versus emotional expression—and seek to reconcile them. Additionally, they all champion the use of mixed methods—either simultaneously or sequentially—adopting some combination of direct (...) or indirect observation, subjective understanding/experience, and physiological change. Using examples drawn for their own research, the authors provide new ways to capture emotion that will carry emotion scholars into the next four decades of research. (shrink)

This article seeks to shed light on the beliefs that influence nurses’ intention of respecting or not respecting an advance directive document, namely a living will or a durable power of attorney. Nurses’ beliefs were measured using a 44-statement questionnaire. The sample was made up of 306 nurses working either in a long-term care centre or in a hospital centre offering general and specialized care in the province of Québec. The results indicate that nurses have a strong intention (...) of complying with advance directives written by patients. The analysis also shows that four variables determine the strength of this intention: respect for autonomy; the location of the workplace; justice; and the dimension of relationships and emotions. Although these documents favour the expression of patients’ wishes, nurses should be aware that they do not systematically guarantee respect of a patient’s autonomy, nor do they replace a relationship based on trust between patients and health care professionals. (shrink)

Approximately one in three American adults has executed a living will or healthcare declaration stating personal preferences regarding medical treatment in the event that he or she becomes terminally ill and unable to communicate. This figure stands in striking contrast to the 90% of Americans who, when asked, express specific wishes regarding their choice of care under such circumstances. Congress attempted to increase the number of Americans with advance directives when it passed the Patient Self Determination Act (...) in 1990, billed at the time as the “Miranda Warning” of medicine, which requires hospitals and nursing homes receiving federal funds both to inform patients of their right to refuse life-sustaining care and to record all written directive in patients’ charts. (shrink)

Following the first enactment of living will legislation in California in 1976 the majority of the states of the USA have now passed similar laws. However, flaws have been identified in the way they work in practice and many states are considering reviewing their legislation. In Britain there is no legislation but the subject is currently commanding considerable interest. This paper assesses the future prospects for living wills in both the USA and Britain, analysing the different options (...) available and comparing the two countries. If patients who become permanently incompetent are to have their previous autonomous decision-making respected, there is general agreement that advance directives for health care must be introduced. The difficulty is in deciding how to implement them, and especially whether this should be by statutory or non-statutory means, the traditions in the two countries being very different in this respect. It is concluded that whichever route is taken, promoting respect for patient autonomy is as much a matter for education and persuasion of doctors as of the adoption of particular instruments. Doctors should therefore be trained in what constitutes good medical practice in this area and, to ensure that it can be carried out properly, the general level of medical facilities for these patients must also be protected and promoted. (shrink)

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

Background: Ethical and legal issues are increasingly being reported by health caregivers; however, little is known about the nature of these issues in geriatric care. These issues can improve work and care conditions in healthcare, and consequently, the health and welfare of older people. Aim: This literature review aims to identify research focusing on ethical and legal issues in geriatric care, in order to give nurses and other health care workers an overview of existing grievances and possible solutions to take (...) care of old patients in a both ethical and legally correct way. Methods: Using a systematic approach based on Aveyard, a search of the PubMed, CINAHL, and Ethicshare databases was conducted to find out the articles published on ethical and legal issues in geriatric care. Ethical considerations: The approval for the study was obtained from UMIT-The Health and Life Sciences University, Austria. Results: Only 50 articles were included for systematic analysis reporting ethical and legal issues in the geriatric care. The results presented in this article showed that the main ethical issues were related to the older people’s autonomy, respect for their needs, wishes and values, and respect for their decision-making. The main legal issues were related to patients’ rights, advance directives, elderly rights, treatment nutrition dilemma, and autonomy. Conclusion: Further education for professional caregivers, elderly people, and their families is needed on following topics: care planning, directive and living wills, and caregiver-family member relationships to guide and support the elderly people within their decision-making processes and during the end-of-life care. (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)

In the present chapter, we seek to better understand how lay people reason about the “true self” of a person with advancing dementia. We are also interested in how such reasoning bears on laypeople’s views about the validity or invalidity of an advance directive (AD) regarding that person’s treatment. Toward that end, we will report the results of two empirical studies we undertook to gain insights into this relationship: namely, between judgments about the true self and whether to follow (...) an AD. We find that many participants judge that a hypothetical person with dementia, stipulated to be non-autonomous with respect to her healthcare decision-making, is nevertheless still her “true self” and that her current apparent preference (to be treated) should be honored despite conflicting with the autonomous preference (not to be treated) previously recorded in her AD. We discuss potential normative implications of our findings, drawing on arguments from the emerging literature on experimental philosophical bioethics, also known experimental bioethics or “bioxphi.”. (shrink)

The purpose of this study was to evaluate the effectiveness of an educational intervention regarding end-of-life discussion directed at older Japanese adults and their attitude to and acceptance of this intervention. A quasi-experimental design was used. A total of 121 older adults, aged 65 years and over, consented to participate. Data from 55 intervention and 57 control participants were used for the analysis. The intervention consisted of an education program comprising a video, a lecture using a handout, and discussion among (...) participants. The control group received only the handout. Both groups were followed up after one month. The intervention group’s attitude became more favorable towards advance directives, especially living wills (P = 0.024). In addition, their expression of preference for life-sustaining treatment by means of artificial nutrition was less at follow up, demonstrating that these older adults had become more autonomous (P = 0.008). There was greater acceptance of the intervention as a whole by the intervention group compared with the control group (P = 0.011). Although few participants overall completed living wills, at follow up twice as many in the intervention group had discussed end-of-life matters with family members and/or their physician. (shrink)

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who should (...) make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life. (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 are intended to extend patient autonomy by enabling patients to prospectively direct the care of their future incapacitated selves. There has been much discussion about issues such as whether the future incompetent self is identical to the agent who issues the advance directives or whether advance directives can legitimately secure patient autonomy. However, there is another important question to ask: to what extent and in what conditions is it ethically appropriate for one (...) to limit the liberty or agency of one’s future incompetent self by issuing an advance directive? -/- In this paper, I use a virtue-ethical approach to explore this question, focusing on the case of an advance directive for the future self with moderate dementia. First, I examine virtuous attitudes with regard to autonomy and argue that one can manifest vices or ethically undesirable character traits in trying to intervene in the future self’s life. In particular, I argue that this case can manifest vices such as disdainfulness, intellectual arrogance, and self-dictatorship, which is the vice of trying to control one’s life to an excessive degree, and that a self-dictator fails to give due moral consideration to the future self’s liberty or agency. I then introduce the Daoist idea of wu-wei, which recommends embracement of what happens in one’s life, as one of the possible remedies for the overemphasis on the value of autonomy and control. (shrink)

Background: A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the ‘Let Me Decide’ advance care planning programme in long-term-care. Research design: This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes and one community (...) hospital. Ethical considerations: The local research ethics committee granted ethical approval. Findings: Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. Discussion: The challenges encountered were largely concerned with preserving resident’s autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. Conclusions: Although it may be too late for many long-term-care residents to complete their own advance care directive, the ‘ Let Me Decide’ programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice. (shrink)

People have understandable concerns over what happens to their bodies, both during their life and after they die. Consent to organ donation is often perceived as an altruistic decision made by individuals prior to their death so that others can benefit from use of their organs once they have died. More recently, live organ donation has also been possible, where an individual chooses to donate an organ or body tissue that will not result in their death (such as a kidney). (...) Although these live organ donations can be purely altruistic, they are usually done to benefit a close family member. An additional complicating factor with both kinds of donation is whether forms of extended decision-making can be used as a means of consent. This is where instructions are issued through some form of advance directive giving specific written instructions as to donation or by appointing a proxy surrogate decision-maker to determine such issues. In the case of deceased donation, there is a question as to whether an advance directive can override the wishes of family members. In the case of live organ donation, there is a largely untested concern as to whether advance directives or surrogates can provide acceptable consent to donation when an individual, though still alive, has lost the capacity to consent for themselves. In this paper, I will focus predominantly on the second of these issues concerning live organ donation and the challenges this poses for donors who have lost capacity to consent. I argue that the limitations on advance directives and surrogate decision-making mean that they can only give us an indication of preference and cannot serve as an authoritative consent where there is any dispute over donation. Instead, in turns out that family members have a significant and usually determinate role to play in these decisions. Although I am focusing on organ donation, the implications for this potentially extend to the use of other tissues and even gametes, which could be used for reproductive purposes. (shrink)

This article will explore whether the law should allow people with anorexia nervosa to refuse nutrition and hydration with special reference to the English decision in Re E (Medical Treatment: Anorexia). It argues that the judge in that case made the correct decision in holding that the patient, who suffered from severe anorexia nervosa, lacked capacity to make valid advance directives under the Mental Capacity Act 2005 of the United Kingdom, and that medical procedures that are apparently against (...) her wishes should be carried out for the sake of preserving her life. The law should generally not permit patients with anorexia nervosa to decline nutrition and hydration, precisely because their autonomous ability to make such decisions has been substantially circumscribed by this psychiatric condition. (shrink)