END‐OF‐LIFE CARE IN THE 21st CENTURY: ADVANCE DIRECTIVES IN UNIVERSAL RIGHTS DISCOURSE

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context‐specific and culture‐specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end‐of‐life decision‐making.     

A direct advance on advance directives

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.     

ADVANCE DIRECTIVES IN TURKEY'S CULTURAL CONTEXT: EXAMINING THE POTENTIAL BENEFITS FOR THE IMPLEMENTATION OF PATIENT RIGHTS

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.     

A proposal for the use of advance directives in the treatment of incompetent mentally ill persons

[M]y question is how these patients while competent might be able to give their own informed consent to treatment, despite being both unwilling and incompetent to do so when treatment is to be begun, thereby reducing the need to relax the dangerousness criteria for involuntary commitment. It is uncontroversial that the dangerousness requirement would be too restrictive for all treatment of mental illness. When competent patients voluntarily seek and/or accept treatment for their mental illness, neither public policy nor medical practice restricts treatment to those patients judged to be dangerous. Instead, criteria should be and generally are comparable to those for the treatment of physical illness -- whether the patient is ill, in this case mentally ill, and likely to benefit from treatment. Through use of advance directives, it would be possible for mentally ill persons who are currently refusing treatment to give prior consent, while competent and with their disease in remission, to treatment at a later time when they are incompetent, have become noncompliant, and are refusing treatment. My proposal is certainly not entirely novel, since others have made similar proposals under the heading of Ulysses contracts and voluntary commitment contracts. Addressing briefly some of the criticisms of these earlier proposals will bring out one fundamental difference between them and my proposal here for a new use of advance directives -- whether the patient must then be incompetent when the contract or directive made earlier is later invoked -- a difference I shall argue strongly favors my proposal.     

RECLAIMING THE PATIENT'S VOICE AND SPIRIT IN DYING: AN INSIGHT FROM ISRAEL

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico‐legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but limits their effect and form through complex medico‐legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico‐legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient‐centred and addresses the psycho‐social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances.     

Adversaries at the Bedside: Advance Care Plans and Future Welfare

Advance care planning refers to the process of determining how one wants to be cared for in the event that one is no longer competent to make one's own medical decisions. Some have argued that advance care plans often fail to be normatively binding on caretakers because those plans do not reflect the interests of patients once they enter an incompetent state. In this article, we argue that when the core medical ethical principles of respect for patient autonomy, honest and adequate disclosure of information, institutional transparency, and concern for patient welfare are upheld, a policy that would allow for the disregard of advance care plans is self‐defeating. This is because when the four principles are upheld, a patient's willingness to undergo treatment depends critically on the willingness of her caretakers to honor the wishes she has outlined in her advance care plan. A patient who fears that her caretakers will not honor her wishes may choose to avoid medical care so as to limit the influence of her caretakers in the future, which may lead to worse medical outcomes than if she had undergone care. In order to avoid worse medical outcomes and uphold the four core principles, caregivers who are concerned about the future welfare of their patients should focus on improving advance care planning and commit to honoring their patients’ advance care plans.     

Advance directives, dementia, and 'the someone else problem'

Advance directives permit competent adult patients to provide guidance regarding their care in the event that they lose the capacity to make medical decisions. One concern about the use of advance directives is the possibility that, in certain cases in which a patient undergoes massive psychological change, the individual who exists after such change is literally a (numerically) distinct individual from the person who completed the directive. If this is true, there is good reason to question the authority of the directive ‐ which is supposed to apply to the individual who completed it, not to someone else. This is 'the someone else problem'.
After briefly introducing advance directives as a basis for medical decision-making, this paper elaborates 'the someone else problem' in the context of severe dementia. The paper then reconstructs the reasoning that leads to this putative problem and exposes the important underlying assumption that we are essentially persons. An alternative view of what we are, one that regards personhood as inessential, is then considered, before several arguments are advanced in favor of that alternative view. The paper next explores implications for advance directives: 'The someone else problem' is effectively dissolved, while it is noted that a related problem (one beyond the paper's scope) may persist. A few implications beyond advance directives are also identified.     

Rational desires and the limitation of life-sustaining treatment

It is accepted that treatment of previously competent, now incompetent patients can be limited if that is what the patient would desire, if she were now competent. Expressed past preferences or an advance directive are often taken to constitute sufficient evidence of what a patient would now desire. I distinguish between desires and rational desires. I argue that for a desire to be an expression of a person's autonomy, it must be or satisfy that person's rational desires. A person rationally desires a course of action if that person desires it while being in possession of all available relevant facts, without committing relevant error of logic, and "vividly imagining" what its consequences would be like for her. I argue that some competent, expressed desires obstruct autonomy. I show that several psychological mechanisms operate to prevent a person rationally evaluating what future life in a disabled state would be like. Rational evaluation is difficult. However, treatment limitation, if it is to respect autonomy, must be in accord with a patient's rational desires, and not merely her expressed desires. I illustrate the implications of these arguments for the use of advance directives and for the treatment of competent patients.     

Family physicians' attitudes toward advance directives.

OBJECTIVE: To examine the attitudes toward, the experience with and the knowledge of advance directives of family physicians in Ontario. DESIGN: Cross-sectional survey. PARTICIPANTS: A questionnaire was mailed to 1000 family physicians, representing a random sample of one-third of the active members of the Ontario College of Family Physicians; 643 (64%) responded. RESULTS: In all, 86% of the physicians favoured the use of advance directives, but only 19% had ever discussed them with more than 10 patients. Most of the physicians agreed with statements supporting the use of advance directives and disagreed with statements opposing their use. Of the respondents 80% reported that they had never used a directive in managing an incompetent patient. Of the physicians who responded that they had such experience, over half said that they had not always followed the directions contained in the directive. The proportions of physicians who responded that certain patient groups should be offered the opportunity to complete an advance directive were 96% for terminally ill patients, 95% for chronically ill patients, 85% for people with human immunodeficiency virus infection, 77% for people over 65 years of age, 43% for all adults, 40% for people admitted to hospital on an elective basis and 33% for people admitted on an emergency basis. The proportions of physicians who felt that the following strategies would encourage them to offer advance directives to their patients were 92% for public education, 90% for professional education, 89% for legislation protecting physicians against liability when following a directive, 80% for legislation supporting the use of directives, 79% for hospital policy supporting the use of directives, 73% for reimbursement for time spent discussing directives with patients and 64% for hospital policy requiring that all patients be routinely offered the opportunity to complete a directive at the time of admission. CONCLUSIONS: Family physicians favour advance directives but use them infrequently. Most physicians support offering them to terminally or chronically ill patients but not to all patients at the time of admission to hospital. Although governments emphasize legislation, most physicians believe that public and professional education programs would be at least as likely as legislation to encourage them to offer advance directives to their patients.     

Advanced directives. Legal and practical aspects of negative instructions concerning medical treatment

The right of a competent patient to stipulate in advance of possible non-competence, medical treatment he does not want, is based on the fundamental legal principle that a person cannot be medically treated without his informed consent. It is in Dutch law a strong and almost unqualified right. There are indications in the international literature, however, that advance directives in many cases may not have much influence on medical treatment at the end of life. Very little is known about the social practice of advance directives in the Netherlands.     

‘VAGUE OVIEDO’: AUTONOMY,CULTURE AND THE CASE OF PREVIOUSLY COMPETENT PATIENTS

The paper examines the ethical and legal challenges of making decisions for previously competent patients and the role of advance directives and legal representatives in light of the Oviedo Convention. The paper identifies gaps in the Convention that result in conflicting instructions in cases of a disagreement between the expressed prior wishes of a patient, and the legal representative. The authors also examine the legal and moral status of informally expressed prior wishes of patients unable to consent. The authors argue that positivist legal reasoning is insufficient for a consistent interpretation of the relevant provisions of the Convention and argue that ethical argumentation is needed to provide guidance in such cases. Based on the ethical arguments, the authors propose a way of reconciling the apparent inconsistencies in the Oviedo Convention. They advance a culturally sensitive approach to the application of the Convention at the national level. This approach understands autonomy as a broader, relational consent and emphasizes the social and cultural embeddedness of the individual. Based on their approach, the authors argue that there exists a moral obligation to respect the prior wishes of the patient even in countries without advance directives. Yet it should be left to the national legislations to determine the extent of this obligation and its concrete forms.     

Models for truth‐telling in physician‐patient encounters: What can we learn from Yoruba concept of Ooto?

Empirical studies have now established that many patients make clinical decisions based on models other than Anglo American model of truth‐telling and patient autonomy. Some scholars also add that current medical ethics frameworks and recent proposals for enhancing communication in health professional‐patient relationship have not adequately accommodated these models. In certain clinical contexts where health professional and patients are motivated by significant cultural and religious values, these current frameworks cannot prevent communication breakdown, which can, in turn, jeopardize patient care, cause undue distress to a patient in certain clinical contexts or negatively impact his/her relationship with the community. These empirical studies have now recommended that additional frameworks developed around other models of truth‐telling; and which take very seriously significant value‐differences which sometimes exist between health professional and patients, as well as patient's cultural/religious values or relational capacities, must be developed. This paper contributes towards the development of one. Specifically, this study proposes a framework for truth‐telling developed around African model of truth‐telling by drawing insights from the communitarian concept of oot?? amongst the Yoruba people of south west Nigeria. I am optimistic that if this model is incorporated into current medical ethics codes and curricula, it will significantly enhance health professional‐patient communication.     

The concept of precedent autonomy

Does respect for autonomy imply respect for precedent autonomy? The principle of respect for autonomy requires us to respect a competent patient’s treatment preference, but not everyone agrees that it requires us to respect preferences formed earlier by a now‐incapacitated patient, such as those expressed in an advance directive. The concept of precedent autonomy, which concerns just such preferences, is problematic because it is not clear that we can still attribute to a now‐incapacitated patient a preference which that patient never disaffirmed but can no longer understand. If we cannot make that attribution, then perhaps we should not respect precedent autonomy – after all, how can you respect patient autonomy by giving patients what they no longer want, even if they never disaffirmed those wants? I argue that whether an earlier preference can still be attributed to a now‐incapacitated patient depends on the reasons behind the preference, for a preference includes (and is not merely supported by) the reasons behind it. When the considerations that served as reasons no longer exist, neither does the preference which included those reasons. In particular, if the considerations that served as reasons for the patient exist only under conditions where the patient retains full mental capacity, then once that capacity is lost, so are those reasons and the preference based upon them. I use this analysis of precedent autonomy to ascertain the merits of various approaches to advance medical decisionmaking, including Nancy Rhoden’s approach, approaches based on a Parfitian personal identity analysis, approaches based on soft paternalism, and approaches based on the stability and longevity of preferences. Despite the apparent absurdity of respecting patient autonomy by giving patients what they no longer prefer but have never disaffirmed, I conclude with some programmatic remarks on when and why respect for (precedent) autonomy nonetheless requires us to respect former preferences.     

End‐of‐life decision‐making and advance care directives in Italy. A report and moral appraisal of recent legal provisions

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.     

Durable power of attorney for health care. Are we ready for it?

Health care professionals need to be well informed about advance directives for medical care in the event a patient becomes incapacitated. The Patient Self-Determination Act requires that all patients be advised of their options at the time of hospital admission. Hospitals and health care professionals will need to work together to plan for implementing this law. We surveyed 215 physicians, nurses, and social workers at a Veterans Affairs Medical Center about the California advance directive, the Durable Power of Attorney for Health Care. Attitudes were generally positive. All of the social workers had heard of the durable power of attorney directive, but 36% of physicians and nurses had never heard of it and an additional 20% had no experience with one. For respondents who had heard of the directive, the mean knowledge score was 6.35 of a possible 10 (5 predicted by chance). Respondents brought up the issue of durable power of attorney with patients before a crisis only 19% of the time and determined whether one had been signed for only 16% of older patients in hospital. The most commonly cited reasons for failure to discuss this with patients were lack of proper forms, pamphlets, or a place to refer a patient. Of those who had ever seen such a document in use, 42% were aware of a problem with it at some time. Whereas attitudes toward advance directives are positive, many physicians and nurses had little knowledge of the Durable Power of Attorney for Health Care and were poorly equipped to discuss it with patients. We encourage educating hospital staff to prepare for the enactment of the Patient Self-Determination Act. We also recommend that the concerns raised by professionals about the use of a durable power of attorney be addressed.     

Making an advance directive.

The introduction in Britain of advance directives--which allow a person to state in advance of becoming incompetent that they wish to take part in treatment decisions when no longer mentally competent--has now been advocated by the medical and legal establishments. The practical application of directives relating to health care would be simplified by the adoption of a standard model document together with guidelines summarising the background clinical conditions and any subsequent acute events that may make it appropriate to trigger the use of a directive. As no specific legislation exists, good communication is needed at the various stages between the drafting and implementation of directives if the system of directives is to be successful.     

Outcomes of written living wills in Japan--a survey of the deceased ones' families

A study was recently done to investigate the outcomes of written living wills in Japan, which, unlike the United States, does not legally recognize advance directives. This study collected demographic information and predictors of living will use among families and guardians who used the living will form provided by the Japan Society for Dying with Dignity. According to the results of the study, affliction with cancer and death in a hospital was the best predictor of written living will use. Research on physicians' treatment limitation and withdrawal behaviors in the clinical setting is needed to better understand the actual impact of living wills. Such research can provide better understanding of where boundaries of self-determination are drawn and how to respect autonomy in Japan.     

FINDING AUTONOMY IN BIRTH

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women 'choosing' to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not seem adequate to capture concerns and intuitions that have a strong grip outside this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women's agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be 'for' or 'against' women's access to cesarean delivery in the absence of traditional medical indications – and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach but, rather, taking the value of women's autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women's full inclusion in a safe and positive birth process.     

Reconciling female genital circumcision with universal human rights

One of the most challenging issues in cross‐cultural bioethics concerns the long‐standing socio‐cultural practice of female genital circumcision (FGC), which is prevalent in many African countries and the Middle East as well as in some Asian and Western countries. It is commonly assumed that FGC, in all its versions, constitutes a gross violation of the universal human rights of health, physical integrity, and individual autonomy and hence should be abolished. This article, however, suggests a mediating approach according to which one form of FGC, the removal of the clitoris foreskin, can be made compatible with the high demands of universal human rights. The argument presupposes the idea that human rights are not absolutist by nature but can be framed in a meaningful, culturally sensitive way. It proposes important limiting conditions that must be met for the practice of FGC to be considered in accordance with the human rights agenda.     

Are open‐Label Placebos Ethical? Informed Consent and Ethical Equivocations

The doctor‐patient relationship is built on an implicit covenant of trust, yet it was not until the post‐World War Two era that respect for patient autonomy emerged as an article of mainstream medical ethics. Unlike their medical forebears, physicians today are expected to furnish patients with adequate information about diagnoses, prognoses and treatments. Against these dicta there has been ongoing debate over whether placebos pose a threat to patient autonomy. A key premise underlying medical ethics discussion is the notion that the placebo effect necessitates patient deception. Indeed, the American Medical Association guidelines imply that placebo treatment necessary entails a form of deception. As a consequence of this assumption, the fulcrum of debate on the use of placebo treatment has hinged on whether that deception is ever justified. Recently performed experiments with open‐label transparently prescribed placebos have begun to challenge the notion that deception is necessary in eliciting the placebo effect and such effects necessarily involve a binary distinction between autonomy and beneficence. In this article we focus on the content of disclosures in distinctive open‐label, transparently disclosed placebo studies and inquire whether they might be said to invoke deception in clinical contexts, and if so, whether the deception is unethical. We find that open placebos may be said to involve equivocation over how placebos work. However, drawing on surveys of patient attitudes we suggest that this equivocation appears to be acceptable to patients. We conclude that open placebos fulfil current American Medical Association guidelines for placebo use, and propose future research directions for harnessing the placebo effect ethically.