In their article, Navin, Brummett, and Wasserman (2022) advance the idea that there are qualitatively different types of decision-making capacity (DMC) for treatment refusals. Departing from what t...

Volume 20, Issue 8, August 2020, Page 119-120.

Patients with mental illness, and depression in particular, present clinicians and surrogate decision-makers with complex ethical dilemmas when they refuse life-sustaining non-psychiatric treatment. When treatment rejection is at variance with the beliefs and preferences that could be expected based on their premorbid or “authentic” self, their capacity to make these decisions may be called into question. If capacity cannot be demonstrated, medical decisions fall to surrogates who are usually advised to decide based on a substituted judgment standard or, (...) when that is not possible, best interest. We propose that in cases where the patient meets the widely accepted cognitive criteria for capacity but is making decisions that appear inauthentic, the surrogate may best uphold patient autonomy by following a “restorative representation” model. We see restorative representation as a subset of substituted judgement in which the decision-maker retains responsibility for deciding as the patient would have, but discerns the decision their “truest self” would make, rather than inferring their current wishes, which are directly influenced by illness. Here we present a case in which the patient’s treatment refusal and previously undiagnosed depression led to difficulty determining the patient’s authentic wishes and placed a distressing burden on the surrogate decision-maker. We use this case to examine how clinicians and ethicists might better advise surrogates who find themselves making these clinically and emotionally challenging decisions. (shrink)

Whether anorexic patients should be able to refuse treatment when this refusal potentially has a fatal outcome is a vexed topic. A recent proposal for a new category of “terminal anorexia” suggests criteria when a move to palliative care or even physician-assisted suicide might be justified. The author argues that this proposed diagnosis presents a false sense of certainty of the illness trajectory by conceptualizing anorexia in analogy with physical disorders and stressing the effects of starvation. Furthermore, this (...) conceptualization is in conflict with the claim that individuals who meet the diagnostic criteria for terminal anorexia have decision-making capacity. It should therefore be rejected. (shrink)

Whether anorexic patients should be able to refuse treatment when this potentially has a fatal outcome is a vexed topic. A recent proposal for a new category of ‘terminal anorexia’ suggests criteria when a move to palliative care or even physician assisted suicide might be justified. I argue that this proposed diagnosis presents a false sense of certainty of the illness trajectory by conceptualizing anorexia in analogy with physical disorders and stressing the effects of starvation. Furthermore, this conceptualization is (...) in conflict with the claim that individuals who meet the diagnostic criteria for terminal anorexia have decision making capacity. It should therefore be rejected. (shrink)

This paper addresses sedation at the end of life. The use of sedation is often seen as a last resort for patients whose death is imminent and whose symptoms cannot be treated in any other way. This paper asks how to assess constellations, where patients want to hasten their death by refusing (further) life-sustaining treatment, or by voluntarily stopping eating and drinking (VSED), and wish this to be accompanied by sedation. We argue that sedation is ethically and legally permissible (...) not only as a last resort, but in principle. Furthermore, we see a clear obligation to sedate in cases of acute suffering of any kind, while in some other constellations individual physicians’ objections to supposedly premature or unnecessary sedation must be respected. Such possible reservations should, however, be reconsidered in light of the fundamental ethical and legal right to a self-determined death. In general, sedation practices should be less restrictive, and existing guidelines should be revised accordingly. -/- ----- Dieser Beitrag befasst sich mit Sedierungen von Patienten am Lebensende. In der Regel werden Sedierungen nur als ultima ratio vorgenommen, wenn die Betroffenen dem Tod bereits nahe sind und Leidenssymptome aufweisen, die anders nicht zu lindern sind. Doch wie sind Fälle zu beurteilen, in denen Patienten sich selbstbestimmt für einen Behandlungs- oder einen Flüssigkeits‑/Nahrungsverzicht entscheiden, um zu sterben, und dafür eine „Begleitsedierung“ erbitten oder erwarten – auch wenn dies aus medizinischer Sicht über eine Anwendung von Sedierung als letztes Mittel hinausgeht? Wir argumentieren hier dafür, dass Zusage wie Anwendung einer Begleitsedierung ethisch und rechtlich nicht nur als ultima ratio, sondern grundsätzlich zulässig sind. Eine klare Verpflichtung zu sedieren sehen wir darüber hinaus bei akutem Leiden jeder Art, während in einigen anderen Konstellationen Vorbehalte individueller Ärzte gegenüber vermeintlich verfrühten oder unnötigen Sedierungen respektiert werden müssen. Vor dem Hintergrund des ethischen und juridischen Grundrechts auf ein selbstbestimmtes Sterben plädieren wir allerdings dafür, auch solche Vorbehalte zu überdenken. Die medizinischen Leitlinien sollten entsprechend überarbeitet werden. (shrink)

Since 1991, the Patient Self-Determination Act (PSDA) has required all health care institutions that receive Federal funds to inform patients upon admission of their rights to make decisions about medical care and to execute advance directives. Implementation of the PSDA presents a special challenge for state mental hospitals. The relevance and possible negative therapeutic impact of discussing end of life decisions at the time of an acute psychiatric admission has recently been raised in the literature. Other ethical dilemmas arising from (...) the interplay between mental illness and informed consent for medical treatment, particularly for older patients committed to state mental hospitals, have been highlighted by the PSDA. In this article we discuss some of the issues raised by implementation of the PSDA in this setting. (shrink)

This pilot study explores the reasons patients have for refusing chemotherapy, and the ways oncologists respond to them. Our hypothesis, generated from interviews with patients and oncologists, is that an ethical approach that views a refusal as an autonomous choice, in which patients are informed about the pros and cons of treatment and have to decide by weighing them, is not sufficient. A different ethical approach is needed to deal with the various evaluations that play a role in (...) treatment refusal. If patients forgo further treatment, while curative or palliative methods are available, there is no perspective from which to integrate the weighing of pros and cons of treatment and the preferences and values of individual cancer patients. A discrepancy thus results as regards what “good reasons” are, evoking misunderstandings or even breaking off communication. Suggestions are given for follow up research. (shrink)

Health professionals faced with refusal of life-saving treatment may wish to override a person's wishes, especially if that person suffers from a mental disorder. Mental illness does not automatically mean a patient is incapable of making decisions of this nature. It is not always clear whether an individual is legally competent to decide whether to undergo treatment or not. This article discusses a clinical example and analyses some of the moral implications.

In 2014, American doctor Ian Crozier chose to travel to Sierra Leone to help fight the West African Ebola epidemic. He contracted Ebola himself and was evacuated to the US, where he received hospital treatment for 40 days. Crozier knowingly chose to expose himself to a risk of contracting Ebola, and thus appears to be at least somewhat morally responsible for his infection. Did this responsibility weaken his justice-based claim to publicly funded treatment? On one influential view—luck egalitarianism—the (...) answer is ‘yes’. Or so Albertsen and Thaysen suggest in this issue.1 According to luck egalitarianism, justice requires the elimination of inequalities between people, but only when the relative harm borne by those on the wrong end of the inequality is a matter of luck. Albertsen and Thaysen understand luck egalitarianism to entail that, when one is responsible for befalling a harm, one has no claim in justice to the mitigation of that harm. On this view, they suggest, Crozier’s claim to treatment would be similar to that of a reckless Alpine skier who is injured in a skiing accident, and would be weaker than that of those with a normal claim to treatment—those who bear no responsibility for their illness. Both of these implications seem implausible, however. Intuitively, Crozier’s claim to treatment is no weaker than those with normal claims, and certainly stronger than the reckless skier’s. Can luck egalitarianism be ‘adjusted or interpreted’ so as to avoid these implausible implications? The authors suggest that it can. Their innovation is to distinguish heroic doctors like Crozier from reckless skiers by invoking a distinction between being responsible for creating harm and for incurring harm. Their thought is that one creates harm when one brings harm on oneself without also preventing at least as much harm to others. Thus, the harm that …. (shrink)

Pickering et al. argue that patients who refuse doctor-recommended treatments should in some cases be deemed incompetent to decide about their own medical care—in part because of their decis...

This paper is an analysis of the limits of family authority to refuse life saving treatment for a family member (in the Chinese medical context). Family consent has long been praised and practiced in many non‐Western cultural settings such as China and Japan. In contrast, the controversy of family refusal remains less examined despite its prevalence in low‐income and middle‐income countries. In this paper, we investigate family refusal in medical emergencies through a combination of legal, empirical and (...) ethical approaches, which is highly relevant to the ongoing discussion about the place of informed consent in non‐Western cultures. We first provide an overview of the Chinese legislation concerning informed consent to show the significance of family values in the context of medical decision‐making and demonstrate the lack of legal support to override family refusal. Next, we present the findings of a vignette question that investigated how 11,771 medical professionals and 2,944 patients in China responded to the family refusal of emergency treatment for an unconscious patient. In our analysis of these results, we employ ethical reasoning to question the legitimacy of family refusal of life‐sustaining emergency treatment for temporarily incompetent patients. Last, we examine some practical obstacles encountered by medical professionals wishing to override family refusal to give context to the discussion. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers from (...) Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers from (...) Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Individuals with major depression may benefit from psychiatric treatment, yet they may refuse such treatment, sometimes because of their depression. Hence the question is raised whether such individuals are competent to refuse psychiatric treatment. The standard notion of competence to consent to treatment, which refers to expression of choice, understanding of medical information, appreciation of the personal relevance of this information, and logical reasoning, may be insufficient to address this question. This is so because major depression (...) may not impair these four abilities while it may disrupt coherence of personal preferences by changing them. Such change may be evaluated by comparing the treatment preferences of the individual during the depression to his or her treatment preferences during normal periods. If these preferences are consistent, they should be respected. If they are not consistent, or past treatment preferences that were arrived at competently cannot be established, treatment refusal may have to be overridden or ignored so as to alleviate the depression and then determine the competent treatment decision of the individual. Further study of the relation between depression and competence to refuse or consent to psychiatric treatment is required. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that (...) the best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

This article explores refusal of medical treatment by adult patients from ethical and legal perspectives. Initially, consequentialist and deontological ethical theory are outlined. The concepts of autonomy, paternalism and competence are described and an overview of Beauchamp and Childress’s principle-based approach to moral reasoning is given. Relevant common law is discussed and the provisions of the Mental Capacity Act 2005 in assessing competence is evaluated. In order to demonstrate the consideration of moral issues in clinical practice, ethical theory (...) is applied to two well-known incidents: the case of Re MB, where doubt over decision-making capacity led to a paternalistic act to override a patient’s choice; and the death of Emma Gough, a situation where respect for autonomy prevailed when healthcare staff acted lawfully in following a patient’s refusal of life-saving treatment. Finally, guidance from regulatory bodies on the roles and responsibilities of health professionals in relation to this topic are considered. (shrink)

When there is a conflict between parents and the physician over appropriate care due to an infant whose decision prevails? What standard, if any, should guide such decisions?This article traces the varying standards articulated over the past three decades from the proposal in Duff and Campbell’s 1973 essay that these decisions are best left to the parents to the Baby Doe Regs of the 1980s which required every life that could be salvaged be continued. We conclude with support for the (...) policy articulated in the 2007 guidelines of the American Academy of Pediatrics on non-intervention or withdrawal of intensive care for high-risk newborns. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Refusals of Treatment and Requests for DeathTom L. Beauchamp (bio)It would be hard to overestimate the importance of two decisions on physician-assisted suicide delivered recently by the Ninth and Second Circuit Courts (Compassion in Dying v. State of Washington, 79 F.3d 790 (9th Cir. 1996) (en banc), aff’g 850 F.Supp. 1454 (W.D. Wash. 1994), rev’g 49 F.3d 586 (9th Cir. 1995); Quill v. Vacco, 80 F.3d 716 (2nd (...) Cir. 1996). They are the highest courts yet to render an opinion on this subject, and their decisions have set the stage for the U.S. Supreme Court to take one of two paths: It will either say that (1) all citizens have a liberty interest in physician-assisted suicide, or that (2) each state may set its own policy on such matters. Whichever path is elected, a right to request physician-assisted suicide is a virtual certainty, at least in some states.These opinions are later segments of an evolving legal history in which courts have held that no criminal liability exists for withholding or withdrawing a life-sustaining treatment when physicians are directed to do so by a patient or an authorized surrogate (see Alan Meisel 1992). The decriminalization of suicide and the right to refuse a life-sustaining treatment now appear to be evolving into a rule that a patient has a legal right to control his or her death, or at least to obtain a lethal prescription. We are at a delicate point in this evolving history. Neither in law nor in bioethics is the justification of physician assistance in suicide the received opinion at the present time, but support for physician assistance in dying could soon become the received opinion in both disciplines.The leading edge of the wedge producing these changes has been widespread acceptance of an extensive right to refuse treatment. This right is today axiomatic in even conservative quarters of bioethics, but 20 years ago it was far from axiomatic that all patients have a right to refuse treatment. Few at that time judged that it would be both immoral and illegal for a physician not to forgo treatment in the face of a competent, authoritative refusal of any form of medical service or treatment.The justification for assistance in bringing about death in medicine is an extension of the justification for letting patients die. Letting a patient die by accepting a valid refusal to continue in life is directly analogous to helping a patient die by accepting a valid request for help. The high value we place on [End Page 371] rights of autonomy thereby spills over from the right to refuse to the underexplored right to request active assistance. 1 As the autonomy interest in this choice increases, denial of help to the patient becomes more burdensome.Those who defend the view that euthanasia and physician-assisted suicide are morally prohibited typically assume that assistance involves an act of killing, that acts of killing are impermissible, and that a defensible distinction exists between killing and letting die. However, this distinction has proved difficult to explicate, and the category of killing often seems distant from the problem at hand. For example, it is an eccentric view that a physician who prescribes a lethal medication to a patient thereby kills the patient (or, for that matter, lets the patient die) when the patient voluntarily ingests the medication and dies. So poor are the conceptual understandings of “killing” and “letting die” that conceptual confusion abounds as to which term to use in almost all morally difficult and controversial cases.A common view is that “letting die” is a matter of “ceasing useless treatments” after which patients die (Gaylin, Kass, Pellegrino, and Siegler 1988). This account is attractive, but too narrow. “Letting die” occurs in medicine under at least two circumstances: cessation of treatment because it is useless and cessation of treatment because it has been refused (which can occur even with useful treatments). Neither conceptually nor morally is “ceasing useless treatment” the proper way to state the condition under which many “letting-die” cases occur. It follows that the type of action—killing or letting... (shrink)

Adolescents are routinely treated differently to adults, even when they possess similar capacities. In this article, we explore the justification for one case of differential treatment of adolescents. We attempt to make philosophical sense of the concurrent consents doctrine in law: adolescents found to have decision-making capacity have the power to consent to—and thereby, all else being equal, permit—their own medical treatment, but they lack the power always to refuse treatment and so render it impermissible. Other parties, (...) that is, individuals who exercise parental responsibility or a court, retain the authority to consent on an adolescent’s behalf. We explore four defences of the doctrine. We reject two attempts to defend the asymmetry in the power to consent to and refuse medical treatment by reference to transitional paternalism. We then consider and reject a stage of life justification. Finally, we articulate a justification based on the distinctiveness of adolescent well-being. (shrink)

Consider a case of a patient receiving life-supporting treatment. With appropriate care the patient could be kept alive for several years. Yet his latest prognosis also indicates that his mental abilities will deteriorate significantly and that ultimately he will become incapable of understanding what happens around and to him. Despite his illness, the patient has been eager to live. However, he finds the prospect that he is now faced with devastating. He undergoes an unconscious process that results in his (...) finding himself with a preference to die. Consequently, he requests his doctor to stop the treatment that she is providing. Other things being equal, standard medical ethics and the legislations of most Western countries allow the doctor to adhere to the patient’s request if it is autonomous. While its origins can be traced back to at least J.S. Mill’s work on women’s rights, unconscious alteration of one’s preferences in light of the options available for one has figured, for example, in recent discussion on female oppression and social choice theory. Yet the topic has not received attention in the debate on voluntary euthanasia. The inattention is unfortunate because the central problem with such adaptation has been taken to be that it undermines personal autonomy. This motivates the main question examined in this chapter, i.e. the problem of whether a request for euthanasia based on an adaptive preference is autonomous. (shrink)

In the present super-aging society, issues concerning what treatment should be given for incapacitated patients have become more important than ever before. This paper discusses whether or not an incapacitated patient’s refusal of treatment should be respected. The authors present a complete hypothetical scenario involving a 75-year-old moderately demented man suffering from malignant lymphoma. Of primary importance are the respect for patient dignity and the protection of human rights. Acts such as coercion, disregard, restriction, and surveillance can (...) be unethical in many situations. The effectiveness of chemotherapy for malignant lymphoma and its adverse outcomes could offset each other, leaving no net benefits for the patient. The patient is vulnerable and this very vulnerability requires the utmost protection and care. However, protection must be sensitive and comprehensive and the protection of his life at the expense of many other valuable factors is not justifiable. Coercing unwanted treatment would be intrusion, not protection, because of the physical and psychological suffering. When the refusal is explicit, consistent, and stable enough, it should to be viewed as true and current desire. Due to moderate dementia, the patient has lost his rational capacity, but his emotional capacity remains. If the remaining portion of his personality is rooted in his feelings, these feelings should be respected as much as possible. Those involved in the care of the patients who refuse treatment should not force them to undergo it simply on the grounds that it may be an established standard in their own country. What must be asked first is whether or not forced treatment would promote the patient’s subjective well-being. Additionally, treatment decisions should not be distorted due to the selfishness or discriminatory feelings of those involved in his care. In situations in which patients lack decisionmaking capacities, overriding the patients’ refusals of treatment should be regarded as an exception, rather than a standard course of action. Even in patients who are incapacitated, treatment refusal could stem from the feelings of the individual. Their subjective wellbeing would not be improved through close observation, restraint, denial, and coercion, the purpose of which they does not understand. (shrink)

In this essay, I will use a minimalist standard of decision-making capacity (DMC) to ascertain two cases in the medical ethics literature: the 1978 case of Mary C. Northern and a more recent case involving a paranoid war veteran (call him Jack). In both cases the patients refuse medical treatment out of denial that they are genuinely ill. I believe these cases illustrate two matters: (1) the need of holding oneself to a minimal DMC standard so as to make (...) as salient as possible the patient's own reasons for sometimes unusual treatment denials; (2) the need for clinicians and other relevant parties to exercise great sensitivity toward engaging, on the patient's own terms, idiosyncratic treatment refusals through regard for what I will call the patient’s conditional preferences. These are particularly relevant matters when a patient’s DMC is questionable yet he/she registers what may well be his/her settled preferences. (shrink)

The principal question of this paper is: Why are religious values special in refusal of lifesaving medical treatment? This question is approached through a critical examination of a common kind of refusal of treatment case, one involving a rational adult. The central value cited in defence of honouring such a patient's refusal is autonomy. Once autonomy is isolated from other justificatory factors, however, possible cases can be imagined which cast doubt on the great valuational weight (...) assigned it by strong anti-paternalists. This weight is sufficient, in their estimation, to justify honouring the patient's refusal. There is thus a tension between the strong anti-paternalist's commitment to the sufficiency of autonomy and our intuitions respecting such cases. Attempts can be made to relieve this tension, such as arguing that patients aren't really rational in the circumstances envisaged, or that other values, such as privacy or bodily integrity, if added to autonomy, are sufficient to justify an anti-paternalistic stance. All such attempts fail, however. But what does not fail is the addition of religious freedom, freedom respecting a patient's religious beliefs and values. Why religious freedom reduces the tension is then explained, and the specialness of religious beliefs and values examined. (shrink)

We developed this study to examine the issue of parental refusal of treatment, looking at the issue through a cultural competence lens. Recent cases in Canada where courts have declined applications by clinicians for court orders to overrule parental refusal of treatment highlight the dispute in this area. This study analyses the 16 cases of a larger group of 24 cases that were selected by a literature review where cultural or religious beliefs or ethnic identity was (...) described as important reasons behind the refusal. The most significant finding was that nearly all of the cases cited unacceptable side effects as the main reason for declining treatment. We then analysed the detail of the cases and concluded that in the first instance a skilled clinical approach to develop an agreed management plan is by far the best approach. In the event that agreement cannot be reached we recommend engaging a mediator to help the clinician and parents/child to find an agreeable way forward. We argue that the option of se... (shrink)

In recent years, decision-making processes related to medical practices have undergone a change from physician paternalism towards patient autonomy. However, it has been put forward that this situation has changed into or strengthened the parent paternalism for children. Parental paternalism might bring along decisions of refusing the child’s treatment, in such a way to occasionally violate the health right of the child. Paternalistic attitude of parents may also cause physicians to direct towards defensive medicine practices and to display a (...) tendency of avoiding legal liability rather than the benefit of the patient. Coming to the decision of the parent on refusing the child’s treatment together defensive medicine approach of the physician and an environment, where the legal protection mechanisms for the child are not efficient enough, causes serious violations of health rights. International contracts and national law require the protection of the child’s best interest in all cases. In that case, parent’s decision on refusing treatment of the child should be restricted within the scope of the child’s best interest and healthy life right. (shrink)

It is widely accepted now that a patient's right to refuse treatment extends to circumstances in which the exercise of that right may lead to the patient's death. However, it is also often effectively assumed, without argument, that this implies a patient's right to request another agent to intervene so as to bring about his or her death, in a way which would render that agent guilty of murder in the absence of such a request. But the right to (...) refuse treatment can, logically, have no such implication, and the mistaken supposition that it does conflates a right to die with a right to be killed. Confusion over this issue is brought out by an examination of conflicting opinion concerning the permissible termination of ventilation for mentally competent patients. A wider lesson may be drawn regarding the need for the ethical assessment of new forms of life-sustaining medical technology. (shrink)

This paper criticises the current approach of the courts to the problem of patients who refuse life-saving medical treatment. Recent judicial decisions have indicated that, so long as the patient satisfies the minimal test for capacity outlined in Gillick, the courts will not be concerned with the substantive grounds for the refusal. In particular, a 'rationality requirement' will not be imposed. This paper argues that, whilst this approach may accord with our desire to uphold the autonomy of a (...) patient who refuses treatment on religious grounds, it fails to address the problem of the deluded decision-maker whose refusal is based on wrongheaded reasons (and where talk of autonomy is a disservice). The difficulty can be overcome, however, by recognising that the two patients in fact inhabit at distinct realms-the non-rational and the irrational. The test for capacity, at least in the context of life-saving treatment, should revert accordingly to the older concept of 'sound mind', to disallow refusals of an irrational (as opposed to a non-rational) nature. (shrink)

In theory, a competent patient may refuse any and all treatments, even those that sustain life. The problem with this theory, confidently and frequently asserted, is that the circumstances of real patients may so confound us with their complexity as to shake our confident assumptions to their core.For instance, it is not the case that one may always and easily know which patients are competent. Indeed, evaluation of decision-making capacity is notoriously difficult. Not only may reasonable and experienced evaluators, say (...) a judge and a psychiatrist, disagree, but also a person's capacity may change from hour to hour and may extend to some decisions yet not to others. And yet it is on this subtle art of capacity evaluation that life and death decisions often turn, especially when patients decline life-sustaining treatment.An evaluation of capacity may consider the impact of serious medical or psychiatric illness, as well as the patient's life circumstances. (shrink)

That Jehovah's Witnesses cannot refuse life-saving blood transfusions on behalf of their children has acquired the status of virtual “consensus” among bioethicists. However strong the consensus may be on this matter, this article explores whether this view can be plausibly defended on liberal principles by examining it in light of one particularly well worked-out liberal political theory, that of Rawls. It concludes that because of the extremely high priority Rawls attributes to “freedom of conscience,” and the implication from the original (...) position that parents must act paternalistically toward their children as their protectors, Jehovah's Witnesses cannot legitimately be barred from making decisions on behalf of their children, even when the consequences of such decisions are serious and irremediable. (shrink)

Consensual homicide remains a crime in jurisdictions where active voluntary euthanasia has been legalized. At the same time, both jurisdictions, in which euthanasia is legal and those in which it is not, recognize that all patients (whether severely ill or not) have the right to refuse or withdraw medical treatment (including life-saving treatment). In this paper, I focus on the tensions between these three norms (the permission of active euthanasia, the permission to reject life-saving treatment, and the (...) prohibition of consensual homicide), assuming a justification of euthanasia based on the right to (personal) autonomy. I argue that the best way to provide a coherent account of these norms is to claim that patients have two distinct rights: the right to autonomy and the right to bodily integrity. This solution has some relevant implications for the discussion of the legalization of active euthanasia. (shrink)

Objective: To gain insight into the standards of rationality that physicians use when evaluating patients’ treatment refusals.Design of the study: Qualitative design with indepth interviews.Participants: The study sample included 30 patients with cancer and 16 physicians . All patients had refused a recommended oncological treatment.Results: Patients base their treatment refusals mainly on personal values and/or experience. Physicians mainly emphasise the medical perspective when evaluating patients’ treatment refusals. From a medical perspective, a patient’s treatment refusal (...) based on personal values and experience is generally evaluated as irrational and difficult to accept, especially when it concerns a curative treatment. Physicians have a different attitude towards non-curative treatments and have less difficulty accepting a patient’s refusal of these treatments. Thus, an important factor in the physician’s evaluation of a treatment refusal is whether the treatment refused is curative or non-curative.Conclusion: Physicians mainly use goal oriented and patients mainly value oriented rationality, but in the case of non-curative treatment refusal, physicians give more emphasis to value oriented rationality. A consensus between the value oriented approaches of patient and physician may then emerge, leading to the patient’s decision being understood and accepted by the physician. The physician’s acceptance is crucial to his or her attitude towards the patient. It contributes to the patient’s feeling free to decide, and being understood and respected, and thus to a better physician–patient relationship. (shrink)

Aid‐in‐dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision‐making capacity would be invalid. However, many people are more concerned about avoiding living into (...) severe dementia for years—a time when they will lack decision‐making capacity—than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life.Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: “Every day I lose bits of myself, and it’s obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full‐time care.”A major problem with Bennett’s solution, however, is that the individual is likely thereby to be giving up some “good time.” A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life‐sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves. (shrink)

Injuries from failed suicide attempts account for a large number of patients cared for in the emergency and trauma setting. While a fundamental underpinning of clinical ethics is that patients have a right to refuse treatment, individuals presenting with life-threating injuries resulting from suicide attempts are almost universally treated in this acute care setting. Here we discuss the limitations on physician ability to determine capacity in this setting and the challenges these pose in carrying out patient wishes.

Introduction: Prehospital emergency medicine is a specific field of emergency medicine. The basic approach of prehospital emergency medicine is to provide patients with medical intervention at the scene of the incident. This special environment causes health professionals to encounter various problems. One of the most important problems in this field is ethics, in particular questions involving refusal of treatment and the processes associated with it. Objective: The objective of this study is to identify emergency health professionals’ views regarding (...) refusal of treatment. Methods: This study was conducted with 356 health professionals who were on active duty in prehospital emergency health services. The data were collected through a form which included 10 statements. The participants were asked to indicate their level of agreement with the statements given by rating them between 0 and 10. Ethical considerations: Before conducting the research, permission was received from the local ethics committee. Participants were given written information about the purpose of the study. Participants were assured that their participation was voluntary. Results: The healthcare professionals with fewer years of experience in the profession and female participants adopted an attitude of giving priority to providing care. Young participants, in general, respected patient autonomy. However, paradoxically, when it comes to emergency medical cases, they expressed an opinion closer to paternalism. Conclusions: This study has found that prehospital emergency health professionals generally respect the patient’s right to refuse treatment; however, they do not prioritize this right when there is a life-threatening situation or when the person does not have decision-making capacity. In these cases, prehospital emergency health professionals tended to adopt a more paternalistic approach. (shrink)

A large part of the debate around the right to refuse life-prolonging treatment of anorexia nervosa sufferers centers on the issue of competence. Whether or not the anorexic should be allowed to refuse life-saving treatment does not depend solely or primarily on competence. It also depends on whether the anorexic’s suffering is bearable or tractable, and on the degree of involvement of the family in the therapeutic process. Anorexics could be competent to refuse lifesaving treatment (Giordano 2008). (...) However, the anorexic’s refusal of life-saving treatment should not be respected purely because it is a competent decision. In fact, anorexia has two characteristics that weaken the strength of the principle .. (shrink)

In an analysis of artificially intelligent systems for medical diagnostics and treatment planning we argue that patients should be able to exercise a right to withdraw from AI diagnostics and treatment planning for reasons related to (1) the physician’s role in the patients’ formation of and acting on personal preferences and values, (2) the bias and opacity problem of AI systems, and (3) rational concerns about the future societal effects of introducing AI systems in the health care sector.