The ambiguity regarding whether a given intervention is perceived as enhancement or as therapy might contribute to the angst that the public expresses with respect to endorsement of enhancement. We set out to develop empirical data that explored this. We used Amazon Mechanical Turk to recruit participants from Canada and the United States. Each individual was randomly assigned to read one vignette describing the use of a pill to enhance one of 12 cognitive, affective or social domains. The vignettes described (...) a situation in which an individual was using a pill to enhance the relevant domain under one of two possible enhancement conditions, one perceived as enhancing above the norm, what most people recognize as a clear case of enhancement, whereas the other perceived as enhancing towards the norm, with the individual using the enhancement having a modest, but subclinical deficit. Participants were asked how comfortable they were with the individual using the enhancement and about the impact the enhancement might have had in the individuals’ success in life. We found that irrespective of the domain to be enhanced, participants felt significantly more comfortable with ETN than with EAN, and they regarded the enhancement intervention as contributing to greater success in life with ETN rather than EAN. These data demonstrate that the therapy enhancement distinction is morally salient to the public, and that this distinction contributes to the angst that people feel when considering the propriety of CAS enhancement. (shrink)

Current management of people with prolonged disorders of consciousness is failing patients, families and society. The causes include a general lack of concern, knowledge and expertise; a legal and professional framework which impedes timely and appropriate decision-making and/or enactment of the decision; and the exclusive focus on the patient, with no legitimate means to consider the broader consequences of healthcare decisions. This article argues that a clinical pathway based on the principles of the English Mental Capacity Act 2005 and using (...) time-limited treatment trials could greatly improve patient management and reduce stress on families. There needs to be early and continuing use of formal best interests meetings, starting between 7 and 21 days after onset of unconsciousness. The treatment options need to evolve as the clinical state and prognosis becomes more certain. A formal discussion of treatment withdrawal should occur when the upper bound of predicted recovery falls below a level the patient would have considered acceptable, and it should always be discussed when the condition is considered permanent. Any decision to stop treatment should be contingent on a formal second opinion from an independent expert who should review the clinical situation and expected prognosis, but not the best interests decision. The article also asks how, if at all, the adverse effects on the family and the resource implications of long-term care of people left in a prolonged state of unconsciousness should be incorporated in the process. (shrink)

This study examines the decisions of the French Conseil d’Etat and the European Court of Human Rights in the Lambert case concerning the withdrawal of life-sustaining treatments. After presenting the facts of this case, the main legal question will be analyzed from an ethical and medical standpoint. The decisions of the Conseil d’État and then of the European Court of Human Rights are studied from a comparative legal perspective. This commentary focuses on the autonomous will of an unconscious patient and (...) on the judicial interpretation of the right to life as recognized in article 2 of the European Convention on Human Rights. Furthermore, it medically classifies artificial nutrition and hydration as a “treatment” which has ethical and legal implications. While the majority of the bioethical community considers ANH a medical treatment, a minority argues that ANH is basic care. This classification is ambiguous and has conflicting legal interpretations. In the conclusion, the author highlights how a French lawmaker in February 2016, finally clarified the status of ANH as a medical treatment which reconciled the different values at stake. (shrink)

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of (...) Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

The purpose of this article is to develop a conception of death with dignity and to examine whether it is vulnerable to the sort of criticisms that have been made of other conceptions. In this conception “death” is taken to apply to the process of dying; “dignity” is taken to be something that attaches to people because of their personal qualities. In particular, someone lives with dignity if they live well (in accordance with reason, as Aristotle would see it). It (...) follows that health care professionals cannot confer on patients either dignity or death with dignity. They can, however, attempt to ensure that the patient dies without indignity. Indignities are affronts to human dignity, and include such things as serious pain and the exclusion of patients from involvement in decisions about their lives and deaths. This fairly modest conception of death with dignity avoids the traps of being overly subjective or of viewing the sick and helpless as “undignified”. (shrink)

Why do we persist in the relentless pursuit of artificial nourishment and other treatments to maintain a permanently unconscious existence? In facing the future, if not the present world-wide reality of a huge number of persistent vegetative state (PVS) patients, will they be treated because of our ethical commitment to their humanity, or because of an ethical paralysis in the face of biotechnical progress? The PVS patient is cut off from the normal patterns of human connection and communication, with a (...) life unlike other forms of human existence. Why the struggle to justify ending a life which, it is said, has suffered an irreversible loss of the content of consciousness? Elsewhere, the authors have addressed the ethical controversies and confusion engendered by ambiguous terminology, misuse of medical facts and the differing interpretations of what constitutes 'effective' treatment: in particular, the issue of whether in fact artificial nutrition and hydration is a medical treatment, or simply part of the obligatory care owed to all patients, permanently unconscious or not. In this paper, we intend to argue that recent analyses of medical futility, its meaning and ethical implications, despite an absence of public consensus, permit some tentative re-evaluation of our ethical obligations to the PVS patient. (shrink)

In her 2003 article in the British Medical Journal, Ruth Macklin provocatively declared dignity to be a useless concept: either a vague restatement of other more precise values, such as autonomy or respect for persons, or an empty slogan. A recent response to Macklin has challenged this claim. Doris Schroeder attempts to rescue dignity by positing four distinct concepts that fall under the one umbrella term. She argues that much of the confusion surrounding dignity is due to the lack of (...) disambiguation among these four concepts, but that once we understand the different values in question dignity becomes a powerful tool in the fields of human rights and bioethics. It is the goal of this paper to build upon Schroeder's insights by reconnecting the multiple strands of dignity she identifies. It will be argued that the usefulness of dignity as a guiding principle in medical ethics can be much improved by identifying the single conceptual link that ties together the various values flying under its banner. That conceptual link is provided by understanding dignity as the capacity to live by one's standards and principles.



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In 2016, a law came into force in France granting terminally ill patients the right to continuous deep sedation until death. This right was proposed as an alternative to euthanasia and presented as the ‘French response’ to problems at the end of life. The law draws a distinction between CDS and euthanasia and other forms of sympton control at the end of life. France is the first country in the world to legislate on CDS. This short report describes the particular (...) context and underlying social values that led to this piece of legislation, and explores its meaning in the wider French context. (shrink)

In 2016, a law came into force in France granting terminally ill patients the right to continuous deep sedation until death. This right was proposed as an alternative to euthanasia and presented as the ‘French response’ to problems at the end of life. The law draws a distinction between CDS and euthanasia and other forms of sympton control at the end of life. France is the first country in the world to legislate on CDS. This short report describes the particular (...) context and underlying social values that led to this piece of legislation, and explores its meaning in the wider French context. (shrink)

This paper argues that the Quality Adjusted Life Year or QALY is fatally flawed as a way of priority setting in health care and of dealing with the problem of scarce resources. In addition to showing why this is so the paper sets out a view of the moral constraints that govern the allocation of health resources and suggests reasons for a new attitude to the health budget.

BackgroundWhether patients in the vegetative state (VS), minimally conscious state (MCS) or the clinically related locked-in syndrome (LIS) should be kept alive is a matter of intense controversy. This study aimed to examine the moral attitudes of lay people to these questions, and the values and other factors that underlie these attitudes.MethodOne hundred ninety-nine US residents completed a survey using the online platform Mechanical Turk, comprising demographic questions, agreement with treatment withdrawal from each of the conditions, agreement with a series (...) of ethical principles and three personality tests.ResultsMore supported treatment withdrawal from VS (40.2 % agreed, 17.6 % disagreed) than MCS (20.6 %, 41.2 %) or LIS (25.3 %, 35.8 %). Agreement with treatment withdrawal was negatively correlated with religiosity (r = −0.272, P < 0.001), though showed no significant relationship with need for cognition or empathy, and only a partial association with utilitarian judgment in a standard moral dilemma. Support for treatment withdrawal was most strongly associated with endorsement of the importance of patient autonomy, dignity, suffering, best interests. Distributive justice was not given significant weight by most. Importantly, agreement with treatment withdrawal was noticeably higher when considered from a first as opposed to third person perspective for VS (Z = −6.056, P < 0.001), MCS (Z = −6.746, P < 0.001) and LIS (Z = −6.681, P < 0.001).ConclusionLay attitudes to withdrawal of treatment in brain damaged patients are largely shaped by values similar to those central to the secular ethical debate. Neither traditional values such as the sanctity of life nor utilitarian values relating to resource allocation seem to play a central role. Far greater weight is given to autonomy, which may explain why participants were far more willing to endorse withdrawal of treatment when the issue was presented in the first person, or in relation to a concrete case involving a patient’s explicit wishes. Surveys focusing on abstract cases presented in the third person may not provide an accurate picture of lay attitudes to these critical ethical questions. (shrink)