Advance Directives

We aim to establish the following claim: other factors held constant, the relative weights of the epistemic burdens of competing treatment options serve to determine the options that patient surrogates pursue. Simply put, surrogates confront an incentive, ceteris paribus, to pursue treatment options with respect to which their knowledge is most adequate to the requirements of the case. Regardless of what the patient would choose, options that require more knowledge than the surrogate possesses (or is likely to learn) will either (...) be neglected altogether or deeply discounted in the surrogate’s incentive structure. We establish this claim by arguing that the relation between epistemic burdens and incentives in decision-making is a general feature of surrogate decision-making. After establishing the claim, we draw out some of the implications for surrogate decision-making in medicine and offer philosophical and psychological explanations of the phenomenon. (shrink)

Ever since the debate concerning euthanasia was ignited, the distinction between active and passive euthanasia – or, letting die and killing – has been marked as one of its key issues. In this paper I will argue that a) the borderline between act and omission is an altogether blurry one, and it gets even vaguer when it comes to euthanasia, b) there is no morally significant difference between active and passive euthanasia, and c) if there is any, it seems to (...) favor active instead of passive euthanasia. Therefore, while the distinction between active and passive euthanasia might be meaningful in terms of description, if it is considered to be endowed with moral weight and used on purpose of justifying one type of euthanasia instead of the other, it becomes morally problematic and misleading. (shrink)

Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of advance (...) care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will. (shrink)

Some people in Japan are still comfortable with the paternalistic role of doctors, but others wish that their own decisions would receive a greater amount of respect. A total of 747 students of universities and colleges and 114 parents of these students participated in a questionnaire survey. Most of the participants thought that autonomy should be respected in situations involving death with dignity and euthanasia, whereas it should not be respected in attempted suicide and involuntary admission of individuals with mental (...) illness. A cluster analysis revealed that the participants could be divided into the following groups: aid in dying advocates, complete libertarians, protectors of the mentally ill, complete paternalists, and questionables. The assertion of independence score of the Scale for Independent and Interdependent Construal of the Self showed a significant difference among the 5 clusters. These findings suggest that the traditional paternalistic relationship between doctor and patient is undergoing a gradual transformation in Japan. (shrink)

This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual’s rights over that body can support (...) the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify. (shrink)

It has been argued that a biomarker-informed classification system for antisocial individuals has the potential to overcome many obstacles in current conceptualizations of forensic and psychiatric constructs and promises better targeted treatments. However, some have expressed ethical worries about the social impact of the use of biological information for classification. Many have discussed the ethical and legal issues related to possibilities of using biomarkers for predicting antisocial behaviour. We argue that prediction should not raise the most pressing ethical worries. Instead, (...) issues connected with ‘biologisation’, such as stigmatization and negative effects on self-image, need more consideration. However, we conclude that also in this respect there are no principled ethical objections against the use of biomarkers to guide classification and treatment of adult antisocial individuals. (shrink)

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

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

This chapter discusses the moral framework for surrogate decision-making for incompetent medical patients. The chapter focuses on the question of how we can respect the autonomy of those who are no longer competent to make such decisions. The standard counterfactual account of how to respect the autonomy of the incompetent is evaluated, along with accounts that ground respect for autonomy on the patient’s most recent desires and values (regardless of whether the patient still possesses those desires and values) as well (...) as accounts according to which only the current desires and values of the patient matter. Other issues discussed include whether questions of personal identity should affect decision-making for incompetent patients, whether a patient’s former desires and values factor in to the patient’s current well-being, and whether an incompetent patient’s “investment interests” should guide decisions on the patient’s behalf. (shrink)

Background: The knowledge of scientific dishonesty is scarce and heterogeneous. Therefore this study investigates the experiences with and the attitudes towards various forms of scientific dishonesty among PhD-students at the medical faculties of all Norwegian universities.MethodAnonymous questionnaire distributed to all post graduate students attending introductory PhD-courses at all medical faculties in Norway in 2010/2011. Descriptive statistics. Results: 189 of 262 questionnaires were returned (72.1%). 65% of the respondents had not, during the last year, heard or read about researchers who committed (...) scientific dishonesty. One respondent had experienced pressure to fabricate and to falsify data, and one had experienced pressure to plagiarize data. On average 60% of the respondents were uncertain whether their department had a written policy concerning scientific conduct. About 11% of the respondents had experienced unethical pressure concerning the order of authors during the last 12 months. 10% did not find it inappropriate to report experimental data without having conducted the experiment and 38% did not find it inappropriate to try a variety of different methods of analysis to find a statistically significant result. 13% agreed that it is acceptable to selectively omit contradictory results to expedite publication and 10% found it acceptable to falsify or fabricate data to expedite publication, if they were confident of their findings. 79% agreed that they would be willing to report misconduct to a responsible official. Conclusion: Although there is less scientific dishonesty reported in Norway than in other countries, dishonesty is not unknown to doctoral students. Some forms of scientific misconduct are considered to be acceptable by a significant minority. There was little awareness of relevant policies for scientific conduct, but a high level of willingness to report misconduct. (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)

Although advance directives are widely believed to be a key way to safeguard the autonomy of incompetent medical patients, significant questions exist about their moral authority. The main philosophical concern involves cases in which an incompetent patient no longer possesses the desires on which her advance directive was based. The question is, does that entail that prior expressions of medical choices are no longer morally binding? I believe that the answer is “yes.” I argue that a patient’s autonomy is not (...) respected by honoring the desires she used to have but no longer does. I also consider and reject the view that honoring an advance directive that reflects the patient’s previous values must be in that patient’s best interests. If that is correct, then advance directives in the kind of case at issue are not morally binding. (shrink)

The standard by which we apply decision-making for those unable to do so for themselves is an important practical ethical issue with substantial implications for the treatment and welfare of such individuals. The approach to proxy or surrogate decision-making based upon substituted judgement is often seen as the ideal standard to aim for but suffers from a need to provide a clear account of how to determine the validity of the proxy's judgements. Proponents have responded to this demand by providing (...) the truth-conditions for the substituted judgement in terms of counterfactual reasoning using a possible worlds semantics. In this paper, I show how these underpinnings fail to support the substituted judgement approach as a reasonable standard for decision-making. Firstly, I show how this counterfactual element has been poorly interpreted. I then explain how various accounts have failed to reflect problems and limitations associated with providing an interpretation of their truth-conditions using counterfactuals. Finally, I argue that, even when we attend to the initial problems of providing a counterfactual analysis, it still deeply problematic as a means of determining the validity of substituted judgements for two main reasons. Firstly, making determinate judgements as to the truth-value of these judgements will often not be possible and, secondly, there is a strong requirement when interpreting many counterfactual claims to charitably accede to their being true. I conclude that substituted judgements, as interpreted through counterfactual reasoning and possible worlds semantics, do not therefore provide an adequate standard for surrogate decision-making. (shrink)

Background: There is a shortage of reports on what potential recipients of implantable cardioverter–defibrillators need to be informed about and what role they can and want to play in the decision-making process when it comes to whether or not to implant an ICD.Aims: To explore how patients with heart failure and previous episodes of malignant arrhythmia experience and view their role in the decision to initiate ICD treatment.Patients and methods: A qualitative content analysis of semistructured interviews was used. The study (...) population consisted of 31 outpatients with moderate heart failure at the time of their first ICD implantation.Setting: The study was performed at Sahlgrenska University Hospital, Göteborg, Sweden.Results: None of the respondents had discussed the alternative option of receiving treatment with anti-arrhythmic drugs, the estimated risk of a fatal arrhythmia, or the expected time of survival from heart failure in itself. Even so, very little criticism was directed at the lack of information or the lack of participation in the decision-making process. The respondents felt that they had to rely on the doctors’ recommendation when it comes to such a complex and important decision. None of them regretted implantation of the ICD.Conclusions: The respondents were confronted by a matter of fact. They needed an ICD and were given an offer they could not refuse, simply because life was precious to them. Being able to give well-informed consent seemed to be a matter of less importance for them. (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)

Hunger strikes potentially present a serious challenge for attending physicians. Though rare, in certain cases, a conflict can occur between the obligations of beneficence and autonomy. On the one hand, physicians have a duty to preserve life, which entails intervening in a hunger strike before the hunger striker loses his life. On the other hand, physicians’ duty to respect autonomy implies that attending physicians have to respect hunger strikers’ decisions to refuse nutrition. International medical guidelines state that physicians should follow (...) the strikers’ unpressured advance directives. When physicians encounter an unconscious striker, in the absence of reliable advance directives, the guidelines advise physicians to make a decision on the basis of the patient’s values, previously expressed wishes, and best interests. I argue that if there are no advance directives and the striker has already lost his competence, the physician has the responsibility to resuscitate the striker. Once the striker regains his decision-making capacity, he should be asked about his decision. If he is determined to continue fasting and refuses treatment, the physician has a moral obligation to respect this decisions and follow his advance directives. (shrink)

The connections between medicine and well-being are myriad. This paper focuses on the place of well-being in clinical medicine. It is here that different views of well-being, and their connection to concepts like “autonomy” and “authenticity”, both illuminate and are illuminated by looking closely at the kinds of interactions that routinely take place between clinicians, patients, and family members. -/- In the first part of the paper, I explore the place of well-being in a paradigmatic clinical encounter, one where a (...) competent patient interacts with a clinician. The main question here is how, or even whether, the pursuit of patient well-being – however we construe it – figures into a paradigmatic clinical encounter. In the second part of the paper, I consider what I will call a marginal clinical encounter – one where the patient is, as Agnieska Jaworska (1999) puts it, at the “margins of agency” – to theorize about the nature of well-being and to show how different theories of well-being can have dramatic consequences for clinical decision-making. (shrink)

Analisi dei significati della locuzione "diritto di morire" nelle sue accezioni di diritto di porre termine alla propria vita e diritto di ricevere assistenza ed accompagnamento alla morte.

Historically, patients have deferred to physicians′ judgments about appropriate medical care, thereby limiting patient participation in treatment decisions. In this model of medical decision making, physicians typically decided upon the treatment plan. Communication with patients focused on securing their cooperation in accepting a treatment decision that essentially had already been made.

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

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

This paper explores the use of advance directives in clinical dementia research. The focus is on advance consent to participation of demented patients in non-therapeutic research involving more than minimal risks and/or burdens. First, morally relevant differences between advance directives for treatment and care, and advance directives for dementia research are discussed. Then attention is paid to the philosophical issue of dementia and personal identity, and the implications for the moral authority of research advance directives. Thirdly, a number of practical (...) shortcomings of advance directives for non-therapeutic dementia research are explored and attention is paid to the role of proxies. It is concluded that upon a closer look the initial attractiveness of advance directives for dementia research is lessened, and that it is doubtful whether these instruments can compensate for the lack of subject consent in case of non-therapeutic dementia research involving more than minimal risks and/or burdens for the incompetent demented subject. (shrink)

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.

: In this paper, I consider objections to advance directives based on the claim that there is a discontinuity of interests, and of personal identity, between the time a person executes an advance directive and the time when the patient has become severely demented. Focusing narrowly on refusals of life-sustaining treatment for severely demented patients, I argue that acceptance of the psychological view of personal identity does not entail that treatment refusals should be overridden. Although severely demented patients are morally (...) considerable beings, and must be kept comfortable whilst alive, they no longer have an interest in receiving life-sustaining treatment. (shrink)

The dilemma of whether and how to disclose a diagnosis of cancer or of any other terminal illness continues to be a subject of worldwide interest. We present the case of a 62-year-old Japanese woman afflicted with advanced gall bladder cancer who had previously expressed a preference not to be told a diagnosis of cancer. The treating physician revealed the diagnosis to the family first, and then told the patient: "You don't have any cancer yet, but if we don't treat (...) you, it will progress to a cancer". In our analysis, we examine the role of family consent, communication patterns (including ambiguous disclosure), and advance directives for cancer disclosure in Japan. Finally, we explore the implications for Edmund Pellegrino's proposal of "something close to autonomy" as a universal good. (shrink)

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

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)

In the mid to late 1980s a debate arose over the moral and legal authority of advance medical directives. At the center of this debate were two point-counterpoint law journal articles by Rebecca Dresser and Nancy Rhoden. What appeared to have the makings of an ongoing critical dialogue ended with the untimely death of Nancy Rhoden. Rebecca Dresser, however, has continued her challenge of advance directives in numerous publications, most recently in a critique of Ronald Dworkin's Life's Dominion. Like Rhoden, (...) Dworkin has been a staunch advocate of advance directives as an exercise of what has come to be referred to as prospective or precedent autonomy. In this paper I will consider a number of the issues that Dresser has repeatedly raised about the infirmities of advance directives, and suggest that it is from an understanding of and appreciation for the narrative dimension of the life of a person that advanced directives draw one of their most powerful justifications. (shrink)