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.     

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.     

The death of dignity is greatly exaggerated: Reflections 15 years after the declaration of dignity as a useless concept

Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.     

Reflections on determining competency

Psychiatrists are the health care professionals most frequently called upon to determine the competency of a patient to refuse treatment. The motives for determining competency vary in morally significant ways. This paper explores what I term 'the ideal motivational situation' for determining a patient's competency: a desire to respect the patient's autonomy, a desire to promote the patient's overall best interests, and a belief that when these two motives conflict the patient's autonomy should not be dismissed out of hand as a partial patient interest which is naturally outweighed by the totality of his or her interests. I claim that in a liberal, democratic society autonomy ought to trump best interests and be the sole criterion of patient competence. I conclude by offering an essentially aesthetic criterion for determining autonomy.     

Advancing an advance directive debate

A challenge has recently been levelled against the legal and/or moral legitimacy of some advance directives. It has been argued that in certain cases an advance directive carries no weight in a decision on whether to withhold treatment, since the individual in the debilitating state is not the same person as the person who created the advance directive. In the first section of this paper, I examine two formulations of the argument against the moral legitimacy of the advance directives under review. The second section reviews, and criticizes, an objection to such arguments. In the penultimate section, possible models supporting the viability of the advance directives are considered. The final section makes good on an obligation incurred by the title of the paper.     

Covert moral bioenhancement,public health,and autonomy

In a recent article in this journal, Parker Crutchfield argues that if moral bioenhancement ought to be compulsory, as some authors claim, then it ought to be covert, i.e., performed without the knowledge of the population that is being morally enhanced. Crutchfield argues that since the aim of compulsory moral bioenhancement is to prevent ultimate harm to the population, compulsory moral bioenhancement is best categorized as a public health issue, and should therefore be governed by the norms and values that apply in public health settings. In this article, I argue for two related claims. First, I question the extent to which compulsory moral enhancement should be considered a public health issue that ought to be governed by the norms and values that apply in public health settings. Second, I argue that Crutchfield's argument that covert moral bioenhancement would better respect people's autonomy than an overt program overlooks two important autonomy‐based reasons that, in fact, favor an overt moral enhancement program over a covert one.     

On the Islamic authority of the Indonesian state: responsibility,suspicion, and acts of compliance

This article examines how the Indonesian state's efforts to style itself as an Islamic authority have influenced the behaviour of its Muslim citizens. I present cases in which Muslims in Indonesia's Riau Islands comply with Islamic state directives in order to transfer responsibility for their actions to the state, showing how such a mode of practice can support Islamic governmentality, bolster nationalism, and constrain civic activism. Interestingly, compliance may occur even when citizens harbour deep misgivings towards a directive, leading me to query whether suspicion is necessarily inimical to authority. I conclude that a pronouncement's Islamic authority hinges on how Muslims relate to their suspicions regarding it, and that, for Riau Islanders, suspicion's urgency has been tempered by cultural models of personhood, individual subjectivity, and the moral murk of post‐Suharto Indonesia.     

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.     

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.     

Compulsory moral bioenhancement should be covert

Some theorists argue that moral bioenhancement ought to be compulsory. I take this argument one step further, arguing that if moral bioenhancement ought to be compulsory, then its administration ought to be covert rather than overt. This is to say that it is morally preferable for compulsory moral bioenhancement to be administered without the recipients knowing that they are receiving the enhancement. My argument for this is that if moral bioenhancement ought to be compulsory, then its administration is a matter of public health, and for this reason should be governed by public health ethics. I argue that the covert administration of a compulsory moral bioenhancement program better conforms to public health ethics than does an overt compulsory program. In particular, a covert compulsory program promotes values such as liberty, utility, equality, and autonomy better than an overt program does. Thus, a covert compulsory moral bioenhancement program is morally preferable to an overt moral bioenhancement program.     

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.     

INTENTION, AUTONOMY, AND BRAIN EVENTS

Informed consent is the practical expression of the doctrine of autonomy. But the very idea of autonomy and conscious free choice is undercut by the view that human beings react as their unconscious brain centres dictate, depending on factors that may or may not be under rational control and reflection. This worry is, however, based on a faulty model of human autonomy and consciousness and needs close neurophilosophical scrutiny. A critique of the ethics implied by the model takes us towards a 'care of the self' view of autonomy and the subject's attunement to the truth as the crux of reasoning rather than the inner mental/neural state views of autonomy and human choice on offer at present.     

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.     

Neurostimulation and the minimally conscious state

Neurostimulation to restore cognitive and physical functions is an innovative and promising technique for treating patients with severe brain injury that has resulted in a minimally conscious state (MCS). The technique may involve electrical stimulation of the central thalamus, which has extensive projections to the cerebral cortex. Yet it is unclear whether an improvement in neurological functions would result in a net benefit for these patients. Quality-of-life measurements would be necessary to determine whether any benefit of neurostimulation outweighed any harm in their response to different degrees of cognitive and physical disability. These measures could also indicate whether the technique could be ethically justified and whether surrogates could give proxy consent to its use on brain-injured patients.     

WHAT DOES RESPECT FOR THE PATIENT'S AUTONOMY REQUIRE?

Personal autonomy presupposes the notion of rationality. What is not so clear is whether, and how, a compromise of rationality to various degrees will diminish a person's autonomy. In bioethical literature, three major types of threat to the rationality of a patient's medical decision are identified: insufficient information, irrational beliefs/desires, and influence of different framing effects. To overcome the first problem, it is suggested that patients be provided with information about their diseases and treatment choices according to the objective standard. I shall explain how this should be finessed. Regarding the negative impact of irrational beliefs/desires, some philosophers have argued that holding irrational beliefs can still be an expression of autonomy. I reject this argument because the degree of autonomy of a decision depends on the degree of rationality of the beliefs or desires on which the decision is based. Hence, to promote patient autonomy, we need to eliminate irrational beliefs by the provision of evidence and good arguments. Finally, I argue that the way to smooth out the framing effects is to present the same information in different perspectives: it is too often assumed that medical information can always be given in a complete and unadorned manner. This article concludes with a cautionary note that the protection of patient autonomy requires much more time and effort than the current practice usually allows.     

Langenheim, J.H. Plant resins: chemistry, evolution, ecology and ethnobotany.

When I agreed to review this book, I did so because I thoughtit would be an opportunity to bring myself up-to-date in a fieldI felt I ought to know more about. I had no idea that it wouldmake such compulsive reading. Jean Langenheim has spent hercareer working on plant resins and she has done a great serviceby assembling her wealth of knowledge and experience into thismarvellous book. The blandness of the title     

Neuroimaging technique: a diagnostic tool to detect altered states of consciousness

Vegetative and minimally conscious states diagnosis remained a major clinical challenge. New paradigms such as measurement of the global cerebral metabolism, the structural and functional integrity of fronto-parietal network, or the spontaneous activity in resting state have been shown to be helpful to disentangle vegetative from minimally conscious patients. Active neuroimagery paradigms also allow detecting voluntary and conscious activity in non-communicative patients. The implementation of these methods in clinical routine could permit to reduce the current high rate of misdiagnosis (40%).     

Assisted Dying & Disability

This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End‐of‐Life Decision‐Making report, published in this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision‐making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities.     

Against autonomy: How proposed solutions to the problems of living wills forgot its underlying principle

Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science-driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to all, individual patients are treated as population-level groups—as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision-making process by allowing for the incorporation of a variety of methods of advance care planning.     

A KOREAN PERSPECTIVE ON DEVELOPING A GLOBAL POLICY FOR ADVANCE DIRECTIVES

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.