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)

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)

Background 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. Argument 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. Conclusion In general, sedation practices should be less restrictive, and existing guidelines should be revised accordingly. (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)

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...

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)

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 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)

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)

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)

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)

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)

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)

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)

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)

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)

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 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.

Patients have a right to refuse medical treatment. But what should happen after a patient has refused recommended treatment? In many cases, patients receive alternative forms of treatment. These forms of care may be less cost-effective. Does respect for autonomy extend to providing these alternatives? How for does justice constrain autonomy? I begin by providing three arguments that such alternatives should not be offered to those who refuse treatment. I argue that the best argument which refusers (...) can appeal to is based on the egalitarian principle of equality of outcome. However, this principle does not ultimately support a right to less cost-effective alternatives. I focus on Jehovah's Witnesses refusing blood and requesting alternative treatments. However, the point applies to many patients who refuse cost-effective medical care. (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)

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)

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)

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)

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)

In the United Kingdom women have access to termination of pregnancy for maternal reasons until 24 weeks’ completed gestation, but it is accepted practice for children born at or beyond 25 weeks’ gestation to be treated according to the child’s perceived best interests even if this is not in accordance with parental wishes. The authors present a case drawn from clinical practice which highlights the discomfort that parents may feel about such an abrupt change in their rights over their child, (...) and argue that parents should have greater autonomy over treatment decisions regarding their prematurely born children. (shrink)

Traditionally, healthcare workers have had the right to refuse to participate in abortions or physician-assisted suicide, but more recently there has been a movement in white Evangelical circles to expand these rights to include the refusal of any treatment at all to same-sex couples or their children, transgender individuals, or others who offend the provider’s moral sensibilities. Religious freedom of conscience exists in an uneasy tension with laws protecting equal rights in a liberal polity, and it is a (...) particularly fraught question in the context of medicine, where providers’ consciences must be balanced against patients’ rights to access appropriate care. This article examines the refusal of care to classes of people, usually classes defined by various sexual issues with which the caregivers disagree. This expands conscientious refusals from the traditional concept of responses to actions and instead directs it at specific types of people. The article draws on Reformed thought to argue that such refusals are not justified and are, in fact, both a profound misreading of Christian morality and a new and dangerously expansive account of the right to conscientious refusal in medicine. (shrink)

The vignette described in the introduction of this symposium raises a number of ethical and legal problems for physicians who work for correctional institutions and death row inmates. They are not confined to correctional physicians, however, as states have requested aid from practicing physicians in the community, and even from other states, when conflicts have arisen in the treatment of death row inmates as they near the date of execution. As outlined, the case involves a 48-year-old man with a (...) long history of schizophrenia, initially diagnosed at age 19. Compliant with medication, he remained generally free from positive symptoms-delusions and hallucinations. Nonetheless, he committed two murders during a robbery and was sentenced to death. Since his incarceration, the defendant has consistently refused psychotropic medications and has been forcibly medicated on several occasions when he exhibited violent outbursts and was overtly psychotic. (shrink)

May a doctor treat a patient, despite that patient's refusal, when in his professional opinion treatment is necessary? This is the dilemma which must from time to time confront most physicians. An examination of the validity of such a refusal is provided by the present authors who use the case history of a patient refusing treatment, for cancer as well as for a fractured hip, to evaluate the grounds for intervention in such circumstances. In such a (...) situation the patient is said to have a 'false belief' and it is the doctor's duty to try to change that belief in the patient's interest. The false belief is considered here in terms of the liberty principle, the patient's mental competence and on what is called the 'harm principle' (harm to other individuals or to society). Finally the concept of paternalism is examined. The authors conclude that the doctor must attempt to change a false belief, and if this fails he must examine the patient's mental competence to make the decision to refuse treatment. But in the last analysis the doctor may be under an obligation to respect the patient's refusal. Readers might like to look at (or read again) the papers on 'Liberty' and 'Conscience' published in this Journal under the heading Analysis. (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)

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)