Cruzan after Dobbs: What Remains of the Constitutional Right to Refuse Treatment?

In 2022, the U.S. Supreme Court removed constitutional protection from the individual's right to end a pregnancy. In Dobbs v. Jackson Women's Health Organization, the Court invalidated previous rulings protecting that right as part of the individual liberty and privacy interests embedded in the U.S. Constitution. Now, many observers are speculating about the fate of other rights founded on those interests. The Dobbs ruling conflicts with the Court's 1990 Cruzan decision restricting the government's power to interfere with personal medical choices. The language and reasoning in Dobbs and Cruzan offer guidance on how the Court might address future cases involving the right to refuse life-sustaining treatment. The decisions also point to policy strategies for preserving that right.

The "Right" to refuse treatment.

The "right" of an adult patient with capacity to refuse treatment has been very well recognized by the courts over the years. Recently, it was the central issue in this recent case, PH (by his litigation friend, the Official Solicitor) v Betsi Cadwaladr University Health Board ([2022] EWCOP 16). This paper briefly reviews the case and goes on to present the author's views on the general "right" to refuse treatment and the meaning of "right" in the expression, "the right to refuse treatment". It then points out other relevant matters worth noting.

Refusal for religious reasons of a blood transfusion for her husband by wife as legal proxy ignored by the doctors - can the wife claim damages?

A scenario is presented in which a wife's request for religious reasons, and in accordance with her husband's wishes, that her husband not be given a potentially life-saving blood transfusion was ignored by the doctors. Her husband subsequently died. The question then arose whether her husband's estate, or she as his legal proxy, could bring an action for pain and suffering and sentimental damages against the doctors on behalf of her husband. When a patient dies and medical malpractice is involved, the patient's legal rights are extinguished, and their estate cannot begin or continue with a legal action for pain and suffering or sentimental damages - unless the pleadings in the case have been closed (litis contestatio). The result is that the estate or the spouse of a deceased patient may not sue for pain and suffering or sentimental damages on behalf of such patient. The spouse may only claim damages for pain and suffering and sentimental damages if he or she can show that the defendants' conduct regarding the deceased directly affected the spouse concerned. Where emotional shock was caused negligently, a spouse may only recover patrimonial damages and damages for pain and suffering. Where such shock was caused by intentional conduct, additional sentimental damages may also be claimed.

Ethical Framework to Guide Decisions of Treatment Over Objection.

BACKGROUND: Whether to proceed with a medical intervention over the objection of a patient who lacks capacity is a common problem facing practitioners. Despite this, there is a notable gap in the literature describing how to proceed in such situations in an ethically rigorous and consistent fashion. We elaborate on the practical application of the 2018 Rubin and Prager 7-question algorithm for ethics consultations about treatment over objection and we describe the impact of each of the 7 questions. STUDY DESIGN: We retrospectively review a series of consultations at Columbia University Irving Medical Center between April 2017 and May 2020 for treatment over objection in adult patients determined to lack capacity. Outcomes about the final ethics recommendation and the assessment of each of the 7 questions are reported. The statistical analysis was designed to determine which of the 7 questions in the algorithm were most predictive of the final ethics recommendation. RESULTS: In our series, there was an ethics recommendation to proceed over the objection of a patient in 63% of consultations. Although all 7 questions were considered to be important to the ethical analysis of a patient's situation, the presence of logistical barriers to treatment and the imminence of harm to a patient without treatment emerged as the most significant drivers of the recommendation of whether to proceed over objection or not. CONCLUSIONS: Cases of treatment over objection in a patient lacking capacity are frequently encountered problems that require a careful balance of patient autonomy and a physician's duty of beneficence. The application of the Rubin and Prager 7-question algorithm reliably guides a care team through such a complex ethical dilemma.

Confidentiality and treatment refusal: Conservative shifts on reproductive rights by Brazilian medical boards.

Brazil has witnessed a conservative shift in recent years, reflected in setbacks in the field of reproductive rights. Commentators have drawn attention to changes in public policies and legislation that follow this shift. However, due attention has not been paid to changes in the professional standards regulating medical practice and their subsequent consequences for reproductive rights. Against this backdrop, this article examines two recent resolutions enacted by Brazilian medical boards, which violate ethical duties and the law. The first imposes a duty for doctors to disclose confidential medical information about their patients in sexual abuse cases. The second one determines that a pregnant woman's right to refuse medical treatment should be evaluated considering the fetus. This article argues that conservative setbacks operate not only through visible means, such as enacted legislation, but also furtively - through professional medical resolutions. It also asserts that, in such a context, the debate about women's bodily autonomy shifts once again from the human rights ground to the medical field, where it has traditionally been subjected to control and coercion. Finally, it points out the risk that these rules might be used to legitimize new conservative laws and public policies.

Re H (A Child) (Parental Responsibility: Vaccination): The Merits of Adopting A Softer Approach To Vaccination of A Child in Care?

In Re H (A Child) (Parental Responsibility: Vaccination), the Court of Appeal decided that vaccination did not represent 'grave' or 'serious' medical treatment and determined that, in the case of a child under the care of a Local Authority, court authorization for consent to and arrangement of vaccination is no longer required. This is due to the strong medical evidence in support of vaccination. Thus, with due reference to 33(3)(b) Children Act 1989 and while considering proportionality and, particularly, the proportionate response to interference with the parents' right to respect for private and family life under Article 8 of the European Convention on Human Rights, the court held that vaccination is in line with the best interests of the child. This commentary supports this judgment but identifies a slight prospective anomaly in the approach adopted to children in care and those who are not in care. The resolution of this dichotomy lies in broadening the scope of King LJ's approach in this case.

Adolescent Brain Development and Medical Decision-making.

With a few notable exceptions, adolescents do not possess the legal authority to provide consent for or refuse medical interventions. However, in some situations, the question arises regarding whether a mature minor should be permitted to make a life-altering medical decision that would be challenged if made by the minor's parent. In this article, I explore what we currently know about the adolescent brain and how that knowledge should frame our understanding of adolescent decision-making. The prevailing approach to determining when adolescents should have their decisions respected in the medical and legal context, an approach that is focused on establishing capacity under a traditional informed consent model, will be reviewed and critiqued. I will suggest that the traditional model is insufficient and explore the implications for the adolescent role in health care decision-making.

When Does A Minor's Legal Competence To Make Health Care Decisions Matter?

In this article, I examine the role of minors' competence for medical decision-making in modern American law. The doctrine of parental consent remains the default legal and bioethical framework for health care decisions on behalf of children, complemented by a complex array of exceptions. Some of those exceptions vest decisional authority in the minors themselves. Yet, in American law, judgments of minors' competence do not typically trigger shifts in decision-making authority from adults to minors. Rather, minors' decisional capacity becomes relevant only after legislatures or courts determine that the default of parental discretion does not achieve important policy goals or protect implicated constitutional rights in a particular health care context and that those goals can best be achieved or rights best protected by authorizing capable minors to choose for themselves. It is at that point that psychological and neuroscientific evidence plays an important role in informing the legal inquiry as to whether minors whose health is at issue are legally competent to decide.

Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals.

Cases of adolescents in organ failure who refuse solid organ transplant are not common, but several have been discussed in the media in the United States and the United Kingdom. Using the framework developed by Buchanan and Brock for surrogate decision-making, I examine what role the adolescent should morally play when deciding about therapy for life-threatening conditions. I argue that the greater the efficacy of treatment, the less voice the adolescent (and the parent) should have. I then consider how refusals of highly effective transplant cases are similar to and different from refusals of other lifesaving therapies (eg, chemotherapy for leukemia), which is more commonly discussed in the media and medical literature. I examine whether organ scarcity and the need for lifelong immunosuppression justify differences in whether the state intervenes when an adolescent and his or her parents refuse a transplant. I argue that the state, as parens patriae, has an obligation to provide the social supports needed for a successful transplant and follow-up treatment plan, although family refusals may be permissible when the transplant is experimental or of low efficacy because of comorbidities or other factors. I conclude by discussing the need to limit media coverage of pediatric treatment refusals.

Parents refusing blood transfusions for their children solely on religious grounds: Who must apply for the court order?

The South African Constitution provides that children have the right to healthcare, as well as all other rights. Furthermore, in all matters affecting them, their best interests must be 'of paramount importance'. It seems common practice that, when parents refuse blood transfusions for their children solely on religious grounds, doctors and health authorities apply for a court order to overturn such refusals. However, since the implementation of the Children's Act of 2005, it may be that the onus is no longer on doctors and authorities to apply to court to reverse the decision of parents and guardians. It can be argued instead that the burden has shifted to the parents to apply to court for an order to overrule the decision of doctors, by proving to the court that alternative choices are available. Guidance is given for situations, particularly in the public sector, where alternative choices are not available.

The Connecticut Experience with Sell Legislation.

Since 2004, Connecticut has had two different mechanisms for involuntary medication of defendants hospitalized for restoration of competence to stand trial. In this article, we first describe the development of these two mechanisms and compare their procedural elements. The first procedure required a hearing in criminal court, in a process parallel to the subsequent U.S. Supreme Court holding in Sell v. United States; the later procedure uses a civil mechanism in probate court and was enacted in response to the dicta in Sell regarding the preferential use of alternate mechanisms for involuntary medication orders. To compare the effectiveness and efficiency of the two mechanisms, we examined 1,455 admissions to the state's secure forensic hospital for competency restoration for the calendar years 2005 through 2011. Petitions for involuntary medication of defendants were filed in five cases in criminal court (0.3%) and in 177 cases (12.2%) in probate court. The probate mechanism resulted in a significantly shorter duration of the resolution of the competence matter. Both mechanisms were effective at restoring defendants' competency (i.e., two thirds were restored by the criminal court process, and nearly 74% were restored in the civil process).

The ethics of blood transfusion refusal in clinical practice among legal and medical professions in Japan.

We investigated the differences in Japanese and United States medical and legal professional opinions on ethical support for clinical ethical issues using the refusal of blood transfusions on the grounds of religious principles as an example of a clinical ethical issue. In ethical support systems for medical institutions in Japan, 95.0% of "clinical training designation hospitals" have hospital ethics committees, and 63.1% have medical safety divisions; clinical ethical support is provided in accordance with their scale and function. In terms of clinical ethical support limits the discretion of physicians, 59.2% of lawyers responded "No" and 54.4% of doctors responded "Yes". In addition, on the feasibility of government or academic guidelines in clinical practice, 37.7% of lawyers responded "Yes" and 63.0% of doctors responded "No". In terms of "relative transfusion-free" policy, 83.2% of lawyers and 76.8% of doctors responded that it is "unavoidable," while 81.6% of U.S. committee heads responded that it is a "violation of rights." In terms of hospital transfers due to a hospital being unable to treat patients refusing blood transfusion, 62.6% of lawyers reported that it is "unavoidable" while 57.1% of U.S. committee heads reported that it "should be avoided". The results of this study indicate that medical and legal professionals and U.S. ethics committee heads recognize clinical ethical issues in slightly different ways.

Pediatric Cardiology Specialist's Opinions Toward the Acceptability of Comfort Care for Congenital Heart Disease.

In order to evaluate physicians' willingness to seek legal action to mandate surgery when parents refuse surgery for various congenital heart lesions, we surveyed pediatric cardiologists and cardiovascular surgeons at 4 children's hospitals. We asked whether physicians would support parental refusal of surgery for specific heart defects and, if not, whether they would seek legal action to mandate surgery. We then analyzed associations between physicians' willingness to mandate surgery and national operative mortality rates for each lesion. We surveyed 126 cardiologists and 9 cardiac surgeons at four tertiary referral centers. Overall response rate was 77%. Greater than 70% of physicians would seek legal action and mandate surgery for the following lesions: ventricular septal defect, coarctation of the aorta, complete atrioventricular canal, transposition of the great arteries, tetralogy of Fallot, and unobstructed total anomalous pulmonary venous return. Surgery for all of these lesions has reported mortality rates of < 5%. Physicians were less likely to seek legal action when parents refused surgery for Shone complex, any single ventricle lesion, or any congenital heart disease accompanied by Trisomy 13 or Trisomy 18. Among experts in pediatric cardiology, there is widespread agreement about the appropriate response to parental refusal of surgery for most congenital heart lesions, and these lesions tended to be heart defects with lower surgical mortality rates. Lesions for which there was greater consensus among experts were those with the best outcomes. There was less consensus for lesions with higher mortality rates. Such surveys, revealing disagreement among expert professionals, can provide an operational definition of the current professional "gray zone" in which parental preferences should determine treatment.

Family refusal of emergency medical treatment in China: An investigation from legal, empirical and ethical perspectives.

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.

Perceptions of key stakeholders on procedural justice in the Consent And Capacity Board of Ontario's hearings.

The Consent and Capacity Board (CCB) of Ontario is an independent administrative tribunal that adjudicates on matters of consent to medical treatment including involuntary admission to a psychiatric facility and findings of incapacity with regard to treatment decisions. This study explores the perspectives of multiple stakeholders on procedural justice in CCB hearings in Ontario. Using purposeful and snowball sampling, participants including CCB panel members and staff, patients, and other professionals (e.g., lawyers, psychiatrists) were recruited from different sites across the city of Toronto. Using focus groups (n = 10) and individual interviews (n = 14), data were collected from 44 participants including 6 patients and 38 other stakeholders who have participated in CCB hearings. Using thematic analysis, we identified five themes - (i) Inclusiveness (ii) Respect (iii) Fairness (iv) Finding and using one's voice, and (v) Balancing interests. Findings revealed that despite efforts by CCB panel members to conduct hearings in an inclusive manner, the legalistic nature of the proceedings, as well as patients' uncertainty regarding the benefits of testifying, may be perceived as barriers to patients' meaningful participation. There was a general belief that patients are respected during CCB hearings by physicians and panel members; however, patients and their lawyers had mixed perceptions about this issue. Almost all stakeholders, excluding CCB panel members, perceived that CCB hearings were not procedurally fair. Our findings indicate that CCB hearings, as currently conducted, are not perceived as procedurally just by many of the relevant stakeholders. This perception may improve by adopting a more informal and less adversarial hearing format as well as enhancing patients' education and understanding of the CCB hearings' processes and potential outcomes.

Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making.

It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.