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)

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)

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.

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)

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)

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)

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 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.

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)

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)

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)

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.

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)

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)

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)

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)

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)

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.

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)

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)

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)

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)

"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)

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)

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)

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

As the prevalence of dementia rises, it is increasingly important to determine how to best respect incapable individuals' autonomy during end‐of‐life decisions. Many philosophers advocate for the use of advance directives in these situations to allow capable individuals to outline preferences for their future incapable selves. In this paper, however, I consider whether advance directives lack moral authority in instances of dementia. First, I introduce several scholars who have argued that changes in peoplewith dementia's values throughout (...) disease progression reduce the validity of their advanced wishes. I then outline Karin Jongsma's rejection of this claim, which she calls the “losing and choosing” distinction. Jongsma argues that changes in people with dementia's values should not be respected, because they are unchosen and dictated by the disease. I critique her claim that the process of value change is morally relevant when determining which values we respect. I argue that if individuals with dementia are capable of valuing, their contemporary values should be respected, even when they conflict with past preferences outlined in an advance directive. As such, situations of value change diminish the moral authority of advance directives for individuals with dementia. (shrink)

BackgroundAdvance directives imply the promise of determining future medical treatment in case of decisional incapacity. However, clinical practice increasingly indicates that standardized ADs often fail to support patients’ autonomy. To date, little data are available about the quality and impact of ADs on end-of-life decisions for incapacitated acute stroke patients.MethodsWe analyzed the ADs of patients with fatal stroke, focusing on: their availability and type, stated circumstances to which the AD should apply, and stated wishes regarding specific treatment options.ResultsBetween 2011 (...) and 2014, 143 patients died during their hospitalization on our stroke unit. Forty-two of them had a completed and signed, written AD, as reported by their family, but only 35 ADs were available. The circumstances in which the AD should apply were stated by 21/35 as a “terminal condition that will cause death within a relatively short time” or an ongoing “dying process.” A retrospective review found only 16 of 35 ADs described circumstances that, according to the medical file, could have been considered applicable by the treating physicians. A majority of patients objected to cardiopulmonary resuscitation, mechanical ventilation, and artificial nutrition, while almost all directed that treatment for alleviation of pain or discomfort should be provided at all times even if it could hasten death.ConclusionsThe prevalence of ADs among patients who die from acute stroke is still low. A major flaw of the ADs in our cohort was their attempt to determine single medical procedures without focusing on a precise description of applicable scenarios. Therefore, less than half of the ADs were considered applicable for severe acute stroke. These findings stress the need to foster educational programs for the general public about advance care planning to facilitate the processing of timely, comprehensive, and individualized end-of-life decision-making. (shrink)

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid (...) total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

Dr Neil Campbell suggests that when patients suffering extremes of protracted pain ask for help to end their lives, their requests should be discounted as made under compulsion. I contend that the doctors concerned should be referred to and then act upon advance directives made by those patients when of sound and calm mind and afflicted by no such intolerable compulsion.

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)

A psychiatric advance directive (PAD) is a communication tool that promotes patients’ autonomy and gives capacitated adults who live with serious mental illnesses the ability to record their preferences for care and designate a proxy decision maker before a healthcare crisis. Despite a high degree of interest by patients and previous studies that recommend that clinicians facilitate the completion of PADs, the rate of implementation of PADs remains low. Research indicates that many clinicians lack the necessary experience to facilitate (...) the completion of PADs and to use them, and, as a consequence, do not effectively engage patients about PADs. This study developed practical recommendations for clinicians to improve their ability to communicate and facilitate PADs. We (1) thematically analyze definitions of PADs published in 118 articles across disciplines, and (2) present our recommendations for enhanced communication in clinical practice that emphasize patient-centeredness, usefulness, and clarity, aligned with evidence-based practices that put patients’ autonomy and understanding first. While there is no one-sizefits- all script to engage patients in complex conversations, our recommended strategies include an emphasis on patients’ autonomy, the adaptation of word choices, the use of metaphor not simile, and checking for patients’ understanding as effective methods of clinical communication. (shrink)

The continuing debate about the use of human embryonic stem cell researchThere is a growing consensus among scientists worldwide that embryonic stem cell research will lead to the development of therapies for common diseases or conditions that affect millions of people, including neurological disease or injury, diabetes, and myocardial infarction. HES cells are also valuable tools in understanding early human developmental processes, cell division and differentiation mechanisms, drug discovery and toxicity testing, and for developing models of human diseases. At the (...) same time many individuals profess to be outraged by the prospect of using human embryos for research and therapeutic purposes and some countries or states have declared such research to be unethical and have banned it. Many people also think it would be immoral to benefit from what they consider to be evil.Obviously all those who think HES cell research is immoral will wish to ensure not only that no HES cell therapies are developed but that they will not openly or inadvertently benefit from such therapies when they can avoid it. I have accordingly designed the following Advance Directive and here offer it as a service to all those offended by therapeutic and research use of human embryos.The design of this advance directive to protect embryos highlights an important point that is often overlooked, namely that those who object to HES cell research as unethical and block such research are committed in consistency to the rejection of any benefits or therapies, which may flow from such research. It is questionable whether these people will fully accept this consequence of opposition to HES cell research, and whether this rejection of HES cell research will be practically possible. (Once …. (shrink)

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...) decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

Voluntades anticipadas: desafíos éticos en el cuidado del paciente Diretivas antecipadas de vontade: desafios éticos no cuidado do paciente Advance healthcare directives are intended for the individual to personally express their will and preferences about healthcare and treatment ahead of time. This literature review aims to describe the concept and structure of advance directives and the ethical aspects involved in patient care. Using the keywords “Advance Healthcare Directive” AND “Ethical Implication” and its Spanish equivalents, five (...) databases were accessed: ProQuest, Philosophy, PubMed, Web of Science and Scielo. Publications were narrowed down to the 2010-2018 period. Thirty-one articles were obtained and read critically. Results of this review were grouped into the following categories: concept, structure, clinical situations in which advance directives apply, strengths and limitations, as well as the ethical aspects involved. End of life-related experiences in which a person loses their ability to make decisions and cannot express their wishes, so it is impossible to know their will, are more common nowadays. Most health workers are not appropriately trained in the preparation and application of advance directives, which becomes an opportunity to research and delve deeper into the subject. Advance directives are a tool that gives health workers reliable information on a patient’s values and wishes, so it is vital to train them to provide respectful quality care. Para citar este artículo / To reference this article / Para citar este artigo Forero J, Vargas I, Bernales M. Voluntades anticipadas: desafíos éticos en el cuidado del paciente. Pers Bioet. 2019;23:224-244. DOI: https://doi.org/10.5294/pebi.2019.23.2.5 Recibido: 26/01/2019 Aceptado: 22/08/2019. (shrink)

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

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

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)

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)

The end of Roe v. Wade has significant implications for the autonomy of pregnant patients at the end of life. At least thirty states restrict the choice to withhold/withdraw life-sustaining treatments from pregnant patients without decisional capacity, invalidating prior advance directives and prohibiting others from choosing these options for the patient. Many restrictions are based on the Roe framework, applying after “viability” or similar considerations of fetal development or prospect for live birth. Scholars have also relied on the (...) abortion framework, arguing that the restrictions impose an undue burden. The end of Roe will free states from having to craft limited restrictions designed to work around prior abortion jurisprudence. Similarly, advocates will no longer be able to draw support from the abortion framework, forcing them to rely instead on cases supporting rights to autonomy/bodily integrity in medical decision-making. (shrink)

Advance directives are instructions on health care. Executed by a mentally competent individual, an advance directive becomes active in the event that the person loses mental capacity to make health care decisions. Many social workers have embraced advance directives on the basis that they promote self-determination at the end of life. However, on closer inspection, undergirding the rationale for advance directives are complex philosophical theories and concepts that include: self-determination; the good death; congruity (...) between the former mentally competent person and the current incapacitated self; and ethics of care. This paper discusses the philosophy, more specifically, bioethics?the discipline that deals with ethical questions that result from advances in medicine?as it relates to advance directives. In order to contextualize the discussion on a macro level, the United States will be used as a case study. Clinical examples will present ideological conflicts that have the potential to result in social work practice dilemmas. Addressed also are recommendations for social workers in both direct and indirect practice. (shrink)

Despite the wide and daunting array of cross-cultural obstacles that the formulation of a global policy on advance directives will clearly pose, the need is equally evident. Specifically, the expansion of medical services driven by medical tourism, just to name one important example, makes this issue urgently relevant. While ensuring consistency across national borders, a global policy will have the additional and perhaps even more important effect of increasing the use of advance directives in clinical settings (...) and enhancing their effectiveness within each country, regardless of where that country's state of the law currently stands. One cross-cultural issue that may represent a major obstacle in formulating, let alone applying, a global policy is whether patient autonomy as the underlying principle for the use of advance directives is a universal norm or a construct of western traditions that must be reconciled with alternative value systems that may place lesser significance on individual choice. A global policy, at a minimum, must emphasize respect for patient autonomy, provision of medical information, limits to the obligations for physicians, and portability. And though the development of a global policy will be no easy task, active engagement in close collaboration with the World Health Organization can make it possible. (shrink)

Despite the wide and daunting array of cross-cultural obstacles that the formulation of a global policy on advance directives will clearly pose, the need is equally evident. Specifically, the expansion of medical services driven by medical tourism, just to name one important example, makes this issue urgently relevant. While ensuring consistency across national borders, a global policy will have the additional and perhaps even more important effect of increasing the use of advance directives in clinical settings (...) and enhancing their effectiveness within each country, regardless of where that country's state of the law currently stands. One cross-cultural issue that may represent a major obstacle in formulating, let alone applying, a global policy is whether patient autonomy as the underlying principle for the use of advance directives is a universal norm or a construct of western traditions that must be reconciled with alternative value systems that may place lesser significance on individual choice. A global policy, at a minimum, must emphasize respect for patient autonomy, provision of medical information, limits to the obligations for physicians, and portability. And though the development of a global policy will be no easy task, active engagement in close collaboration with the World Health Organization can make it possible. (shrink)

Background: Homeless persons in the United States have disproportionately high rates of illness, injury, and mortality and tend to believe that the quality of their end-of-life care will be poor. No studies were found as to whether nurses or nursing students require moral courage to help homeless persons or members of any other demographic complete advance directives. Research hypothesis: We hypothesized that baccalaureate nursing students require moral courage to help homeless persons complete advance directives. Moral courage (...) was defined as a trait of a person or an action that overcomes fears or other challenges to achieve something of great moral worth. Research design: The hypothesis was investigated through a qualitative descriptive study. Aside from the pre-selection of a single variable to study (i.e. moral courage), our investigation was a naturalistic inquiry with narrative hues insofar as it attended to specific words and phrases in the data that were associated with that variable. Participants and research context: A total of 15 baccalaureate nursing students at a public university in the United States responded to questionnaires that sought to elicit fears and other challenges that they both expected to experience and actually experienced while helping homeless persons complete advance directives at a local, non-profit service agency. Ethical considerations: The study was approved by the Internal Review Board of the authors’ university, and each participant signed an informed consent form, which stated that the study involved no reasonably foreseeable risks and that participation was voluntary. Findings: Before meeting with homeless persons, participants reported that they expected to experience two fears and a challenge: fear of behaving in ways that a homeless person would deem inappropriate, fear of discussing a homeless person’s dying and death, and the challenge of adequately conveying the advance directive’s meaning and accurately recording a homeless person’s end-of-life wishes. In contrast, after their meetings with homeless persons, relatively few participants reported having encountered those obstacles. So, while participants required moral courage to assist homeless persons with advance directives, they required greater moral courage as they anticipated their meetings than during those meetings. Discussion: Our study breaks new ground at the intersection of nursing, moral courage, and advance directives. It might also have important implications for how to improve the training that US nursing students receive before they provide this service. Conclusion: Our results cannot be generalized, but portions of our approach are likely to be transferable to similar social contexts. For example, because homeless persons are misunderstood and marginalized throughout the United States, our design for training nursing students to provide this service is also likely to be useful across the United States. Internationally, however, it is not yet known whether our participants’ fears and the challenge they faced are also experienced by those who assist homeless persons or members of other vulnerable populations in documenting healthcare wishes. (shrink)