Volume 25, Issue 2, February 2025, Page 1-2.

In June 2024, NPR News reported on the story of Sun Kai, who created an AI driven avatar of his dead mother (voice, image, and likeness), that he converses with daily. A similar company, Super Brai...

Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions are either wholly independent or dependent and that independence or dependence is tightly coupled with a (...) person's decision‐making capacity. In this article, we array various approaches to decision‐making along a continuum of interdependence. An appreciation of this continuum can empower patients and elucidate ethical challenges that arise when people transition between different kinds of interdependence across the life span. (shrink)

One way to test vaccines is through human challenge trials in which participants are intentionally infected with a contagious organism to expedite the process of assessing the vaccine’s effectiveness. Some experts believe challenge trials may play an important role in fighting COVID-19, especially if the vaccines under current study do not demonstrate sufficient efficacy, if spread of COVID-19 is controlled to a point that radically slows down traditional trials, or if new vaccines need to be rapidly developed for specific subpopulations.1 (...) Challenge trials involve significant time, burden and risk, requiring participants to spend 3–6 weeks in legal quarantine for 24 hours a day in a high-security facility. During this time, no inperson visitors will be allowed, except for very limited inperson contact from researchers collecting necessary data and checks. Following the quarantine period, participants will be asked to attend numerous outpatient follow-up visits over the course of months, to further monitor their response to the vaccine. Participation involves being away from family who may themselves become sick during the global pandemic, as well as potential fear and mental anguish around being a ‘first’ subject. Because there is no definitive treatment for COVID-19, participants could experience serious illness. But even with milder illness, medical experts know very little about the long-term consequences of COVID-19 infection. This raises the question of how much people should be paid for their participation in COVID-19 challenge trials. Most think participants should be paid something, but many contend that we should be …. (shrink)

The COVID-19 pandemic will generate vexing ethical issues for the foreseeable future and many journals will be open to content that is relevant to our collective effort to meet this challenge. While the pandemic is clearly the critical issue of the moment, it’s important that other issues in medical ethics continue to be addressed as well. As can be seen in this issue, the Journal of Medical Ethics will uphold its commitment to publishing high quality papers (...) on the full array of medical ethics. At the same time, JME aims to be a premiere home for ground-breaking scholarship on the ethical issues raised by COVID-19. Toward this end, we have a number of papers that are freely available online and for which production has been fast-tracked.1–5 A challenge for authors who want to write about the pandemic is the rapidly evolving nature of the situation and the time it takes for journal content to be reviewed and published, even when fast-tracked. For that reason, all authors who would like to submit a paper on the pandemic can also submit a post to the JME blog prior to submitting a full paper to the journal. Those interested in writing for the JME blog should contact one of its editors, Hazem Zohny or Mike King. Over the last 3 weeks, 30 high-quality commentaries on the pandemic have been posted to the blog. These posts are circulated widely via the JME Twitter and Facebook feeds and have stimulated significant …. (shrink)

An original examination of the relevance of behavioral economics for the practice of medical ethics.

In an April 2023 article in JAMA Pediatrics, ‘Life Support System for the Fetonate and the Ethics of Speculation’, authors De Bie, Flake and Feudtner critique bioethicists for practising what they call ‘speculative ethics’. The authors refer to a 2017 article that they published on the Extra-uterine Environment of Neonatal Development (EXTEND) system. This system was able to keep fetonatal (newborn, but in a fetal physiological state) lambs alive outside of the parent lamb’s womb for 4 weeks. The (...) article has been accessed almost 300 000 times and received significant media attention. It also resulted in an explosion in the bioethics literature about ‘the ethics of the artificial womb’. However, the authors bemoan, these ethics discussions focused largely on unrealistic use cases of the new technology—from elective shortening of pregnancies to complete ectogenesis. The authors dubbed these discussions as ‘a technically and developmentally naive, yet sensationally speculative, pipe dream’. The use case of the EXTEND technology that is most realistic involves supporting extremely premature newborns (23–24 weeks). Other probable uses include supporting infants in later gestational ages (25–28 weeks) with pathological conditions, potentially allowing for surgeries or other therapeutics to be delivered without imposing risks on pregnant patients. To …. (shrink)

I published my first article in the Journal of Medical Ethics back in 2007 as an (almost) newly minted PhD. It was a proud moment. I respected the JME as a journal where I had read some of the most tightly argued and challenging essays in the literature. They inspired me to specialise in medical ethics and rethink some of my fundamental positions on various topics. This has been the case since, and I am proud now (...) to join the editorial team as an associate editor focusing on increasing North American presence and on the journal’s feature articles. The journal has included feature articles for several years now, and because they have worked so well, the editorial team wants to build on and invest in their success. Feature articles are primarily selected from the best extended essays or research papers. They are among the most highly cited and accessed articles in the field. On average, they have twice as many citations as a regular article published in the journal (and five times as many citations as an article in Ethics, a top philosophy journal). This may be due, in part, to the journal’s practice of making feature articles open access so that all scholars can access them. In addition, the JME is committed to helping promote these articles and their commentaries on its …. (shrink)

Richard Thaler and Cass Sunstein define a nudge as “any aspect of the choice architecture that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives.” Much has been written about the ethics of nudging competent adult patients. Less has been written about the ethics of nudging surrogates’ decision‐making and how the ethical considerations and arguments in that context might differ. Even less has been written about nudging surrogate decision‐making in the (...) context of pediatrics, despite fundamental differences that exist between the pediatric and adult contexts. Yet, as the field of behavioral economics matures and its insights become more established and well‐known, nudges will become more crafted, sophisticated, intentional, and targeted. Thus, the time is now for reflection and ethical analysis regarding the appropriateness of nudges in pediatrics. We argue that there is an even stronger ethical justification for nudging in parental decision‐making than with competent adult patients deciding for themselves. We give three main reasons in support of this: (1) child patients do not have autonomy that can be violated (a concern with some nudges), and nudging need not violate parental decision‐making authority; (2) nudging can help fulfill pediatric clinicians’ obligations to ensure parental decisions are in the child's interests, particularly in contexts where there is high certainty that a recommended intervention is low risk and of high benefit; and (3) nudging can relieve parents’ decisional burden regarding what is best for their child, particularly with decisions that have implications for public health. (shrink)

This July 2020 issue of JME introduces a new section, “COVID-19 Current Controversies,” which will be a recurring section in each issue for the foreseeable future. This issue reflects on some of the most pressing ethical issues that have arisen roughly 6 months into the pandemic. Kathleen Liddell and colleagues examine important legal considerations at play in ventilator allocation decisions raised by the pandemic.1 They point out that ethics-based triage protocols that argue from the principle of “saving the most (...) lives” by withholding or withdrawing ventilators from certain patients could violate the law (U.K. and elsewhere). Patients’ legal rights are not suspended during this crisis, they remind us. The mere action of ventilator removal (extubation and proning) may constitute battery without consent, for example. Moreover, there may be problems with “evidentiary weakness” in some of the prognostic models used to inform such decisions. And, decisions that are inconsistent, subjective, and/or discriminatory may be deemed illegal. Those developing policies need to consider and consult various areas of law including criminal law (eg, murder, battery, negligence, manslaughter), human rights law, civil law (eg, battery, negligence, duty of care, consent), public and administrative law (eg, discrimination, case law), law on decision-making for incapacitated adults, professional regulations, and derogations from current law (eg, immunities and indemnities). Liddell et al offer 10 concrete, legally informed recommendations for those developing triage-policies to consider. Michael Parker and colleagues take on the issue of contact tracing using mobile apps and point out that such apps can enable people to emerge more safely from lockdowns, which provides a strong autonomy-based argument in favour …. (shrink)

The idea of a ‘right to mental integrity’, sometimes referred to as a ‘right against mental interference,’ is a relatively new concept in bioethics, making its way into debates about neurotechnological advances and the establishment of ‘neurorights.’ In this paper, we interrogate the idea of a right to mental integrity. First, we argue that some experts define the right to mental integrity so broadly that rights violations become ubiquitous, thereby trivialising some of the very harms the concept is meant to (...) address. Second, rights-based framing results in an overemphasis on the normative importance of consent, implying that neurointerventions are permissible in cases where people consent to have their mental states influenced or read off, a confidence in consent that we argue is misguided. Third, the concept often collapses the ethics of brain inputs and brain outputs, potentially resulting in a loss of important conceptual nuance. Finally, we argue that the concept of a right to mental integrity is superfluous—what is wrong with most violations of mental integrity can be explained by existing concepts such as autonomy, manipulation, privacy, bodily rights, surveillance, harm and exploitation of vulnerabilities. We conclude that bioethicists and policy-makers ought to either make use of these concepts rather than arguing for the existence of a new right, or they need to avoid making rights violations ubiquitous by settling on a narrower and more rigorous definition of the right. (shrink)

The editors of the _Journal of Medical Ethics_ support the call of the UK Health Alliance on Climate for urgent action to ensure that the current Conference of the Parties to the United Nations Framework Convention on Climate Change ‘finally delivers climate justice for Africa and vulnerable countries’. 1 As they note ‘Africa has suffered disproportionately although it has done little to cause the crisis’. The burden of climate change has thus far fallen disproportionately on Global South countries. The (...) monsoon in Pakistan this year killed over 1100 people and the public health implications of the flooding might affect the health of over 5 million people. 2 The South Asian monsoon impacts the lives of a billion people and the flooding associated with wet seasons is likely to occur eight times more frequently in future years than at present. 3 For many pacific islands such as Kiribati,... (shrink)

Nicholas Makins makes a valuable contribution to the literature on medical decision-making, highlighting the role that risk attitudes play in deliberation and subsequently arguing that, in medical choices under uncertainty, if considerations of autonomy and beneficence support deference to patient values and outcome preferences then they also support deference to patients’ attitudes to risk.1 Crucially, however, Makins suggests that it is not simply first-order risk attitudes that are the appropriate target of deference but, rather, patients’ higher-order risk attitudes. (...) In other words, Makins argues that if considerations of autonomy and beneficence support deference in medical decision-making, this deference should include the risk attitudes that individuals desire to have or reflectively endorse. This commentary draws out a morally relevant and overlooked distinction between: (1) deferring to patients’ higher-order attitudes that endorse the first-order risk attitudes they currently hold. and (2) deferring to patients’ higher-order attitudes that endorse risk attitudes that are at odds with the first-order risk attitudes they currently hold (which equates to a higher-order desire to change one’s first-order risk-attitudes). I agree with Makins that if respect for autonomy and beneficence support deference to patient preferences, then these considerations may also support deference to at least some higher-order risk attitudes, namely, those of type (1). But I think that whether they support deference to those of type (2) is less clear. In particular, it does not …. (shrink)

As the COVID-19 pandemic rages on, this June 2021 issue of the JME contains several articles addressing pandemic-related ethical issues, including, discrimination against persons with disabilities,1 collective moral resilience,2 and stress in medical students due to COVID-19.3 It also contains a critical appraisal of the most recent WHO guidance document on the management of ethical issues during an infectious disease outbreak.4 This June issue of JME also addresses several important clinical ethics issues: covert administration of medication in food,5 (...) educational pelvic exams under anesthesia,6 consent to cancer screening,7 care of critically ill newborns when the birth mother is unwell,8–10 and ethical considerations related to recruiting migrant workers for clinical trials.11 Perhaps what is most unique about this issue is its Feature …. (shrink)

This month’s issue of _Journal of Medical Ethics_ features a symposium on ‘neuro rights’ and the ‘right to mental integrity’. Medical ethics and the law have long recognised bodily rights—motivating requirements that patients give informed consent before medical interventions are performed on them or before research is conducted on them. Rapid advancements in neuroscience and neurotechnology are raising new questions about the boundaries of bodily rights, whether they extend to the mind or the brain, or whether (...) we need new concepts and rights to apply to the mental sphere. As Farahany 1 writes in her recent (2023) book, ‘The Battle for Your Brain’, the global market for consumer neurotechnology is growing rapidly, expecting to reach US$21 billion by 2026. A growing number of people are using personal neurotechnology that allows them to visualise and track their emotions, levels of alertness and concentration, as well as their actual brain... (shrink)

In his paper, ‘Patients, doctors and risk attitudes,’ Nicholas Makins1 argues that healthcare professionals should defer to a patient’s higher-order risk attitudes (ie, the risk attitudes they desire to have or endorse within themselves upon reflection) when making medical decisions. We argue against Makins’ deference to higher-order risk attitudes on the basis that (1) there are significant practical concerns regarding our ability to easily and consistently access and verify the higher-order risk attitudes of patients, (2) there is a lack (...) of a theoretical limit on higher-order risk attitudes (eg, second, third, fourth order), and (3) the consideration of higher-order risk attitudes is actually more paternalistic than Makins suggests because it narrows what counts as an autonomous preference to the limited occasions in which an individual actually reflects on his or her own risk attitude. On the issue of practicality, we can reasonably expect that healthcare professionals would find difficulty eliciting the higher-order risk attitudes of their patients. Take for example the patient who has never expressed his higher-order desire to be more risk adverse and who is not willing nor comfortable expressing this desire. What is the healthcare professional expected to do in this situation? This is even more of a concern for the incapacitated patient, to which Makins seems to imply that …. (shrink)

This July 2022 issue of the JME contains several articles addressing ethical issues related to COVID-19 as well as reproductive ethics—a timely topic, given the leaked U.S. Supreme Court document, anticipating the overturn of Roe v. Wade. On the COVID-19 front, original articles in this issue include an analysis of ethical issues related to sharing research samples and data between low/middle-income countries and high-income countries,1 a retrospective analysis of European scientific societies’ triage policies early in the pandemic,2 an assessment (...) of the fairness of the allocation framework used by the WHO for their COVID-19 Vaccines Global Access Facility,3 balancing physicians’ freedom to express opinions on medical matters with public interest when they run contrary to each other,4 and a survey of Americans’ views on race-based and place-based COVID-19 vaccine prioritisation.5 The articles include a mix of looking back and …. (shrink)

Pregnant adolescents have a higher risk of poor maternal and fetal outcomes, particularly in the setting of concomitant maternal alcohol and other drug (AOD) use. Despite numerous programmes aimed at reducing overall teen pregnancy rates and the recognition of AOD use as a risk factor for unintended pregnancy in adolescents, interventions targeting this specific group have been sparse. In adult drug-using women, financial incentives for contraception have been provided but are ethically controversial. This article explores whether a trial could ethically (...) employ monetary incentives in adolescents with AOD use to promote the use of long-acting reversible contraception (LARC), with special attention to the relevant distinctions between adults and adolescents. We conclude that a trial of incentives to promote LARC in this patient population is ethically permissible if the incentives are small, are tied to completion of an educational activity to minimise the quick fix temptation and potential for non-attendance to the risks and benefits of LARC and are provided only to the adolescent after an assessment of her reasoning to rule out coercion (eg, by guardians) as motivation. Information about treatment for AOD use and follow-up care in case of problems with the contraceptive or desire for removal should also be provided. Before implementing such a trial, qualitative research with input from providers, potential patients and their parents should be conducted to inform the programme's specific structure. (shrink)

In ‘Reification and Assent in Research Involving Those Who Lack Capacity’, Smajdor argues that adults with impaired capacity to grant informed consent (AWIC) are often excluded from participating in biomedical research because they cannot provide informed consent, leading to decreased chances AWIC will benefit from such research. Smajdor uses Honneth’s concept of reification to propose that securing assent (rather than consent) in cases involving AWIC offers patients moral recognition that is not tied to their capacities. Assent provides this recognition by (...) including the patient in a shared moral sphere, highlighting her agency and worth without reducing her to her incapacity or a thing-to-be-managed. Assent also avoids grounding in, or a reliance on, the future development of autonomy (pp.5–6).1 Our recent research on patient and caregiver perspectives of potential paediatric deep brain stimulation (pDBS) for refractory obsessive–compulsive disorder (OCD) and dystonia demonstrates that paediatric neurosurgery patients desire the kind of recognition Smajdor associates with assent, and their caregivers largely agree.2 3 Since (generally) paediatric patients in the USA are unable to grant informed consent, their caregivers must provide it instead. This raises the question of how to properly integrate paediatric patients into the DBS decision-making process. One dimension along which this is evident is that …. (shrink)

ChatGPT has taken the academic community by storm (Cotton, Cotton, and Shipway 2023; Cox and Tzoc 2023; Sullivan, Kelly, and McLaughlan 2023). Since its release in November 2022, chatGPT has predic...

Abstract“Suffering” is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which “suffering” is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering (...) are often getting at something ethically important. But this is where the work of ethics begins, not where it ends. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 42-50, January/February 2022.

While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then (...) motivate the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion. (shrink)

Rapid advancements in artificial intelligence and machine learning (AI/ML) in healthcare raise pressing questions about how much users should trust AI/ML systems, particularly for high stakes clinical decision-making. Ensuring that user trust is properly calibrated to a tool’s computational capacities and limitations has both practical and ethical implications, given that overtrust or undertrust can influence over-reliance or under-reliance on algorithmic tools, with significant implications for patient safety and health outcomes. It is, thus, important to better understand how variability in trust (...) criteria across stakeholders, settings, tools and use cases may influence approaches to using AI/ML tools in real settings. As part of a 5-year, multi-institutional Agency for Health Care Research and Quality-funded study, we identify trust criteria for a survival prediction algorithm intended to support clinical decision-making for left ventricular assist device therapy, using semistructured interviews (n=40) with patients and physicians, analysed via thematic analysis. Findings suggest that physicians and patients share similar empirical considerations for trust, which were primarilyepistemicin nature, focused on accuracy and validity of AI/ML estimates. Trust evaluations considered the nature, integrity and relevance of training data rather than the computational nature of algorithms themselves, suggesting a need to distinguish ‘source’ from ‘functional’ explainability. To a lesser extent, trust criteria were also relational (endorsement from others) and sometimes based on personal beliefs and experience. We discuss implications for promoting appropriate and responsible trust calibration for clinical decision-making use AI/ML. (shrink)

Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating (...) to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process entails and what factors determine patient involvement in the process. However, there is agreement that children have a right to bodily and brain integrity, which should only be infringed upon in rare circumstances. (shrink)

When Jennifer Blumenthal-Barby was a bioethics intern at the Cleveland Clinic while she was still a graduate student, she was puzzled by the decision making of some patients at the clinic. For exam...

In some views, philosophy’s glory days in bioethics are over. While philosophers were especially important in the early days of the field, so the argument goes, the majority of the work in bioethics today involves the “simple” application of existing philosophical principles or concepts, as well as empirical work in bioethics. Here, we address this view head on and ask: What is the role of philosophy in bioethics today? This paper has three specific aims: (1) to respond to skeptics and (...) make the case that philosophy and philosophers still have a very important and meaningful role to play in contemporary bioethics, (2) to discuss some of the current challenges to the meaningful integration of philosophy and bioethics, and (3) to make suggestions for what needs to happen in order for the two fields to stay richly connected. We outline how bioethics center directors, funders, and philosopher bioethicists can help. (shrink)

> ‘The fact about himself that the bullshitter hides, on the other hand, is that the truth-values of his statements are of no central interest to him; what we are not to understand is that his intention is neither to report the truth nor conceal it. It is just this lack of connection to a concern with truth—this indifference to how things really are—that is the essence of bullshit.’1 > —Harry Frankfurt In his paper, Nudging, informed consent, and bullshit, William (...) Simkulet accuses doctors of being bullshitters when they knowingly influence patient decision making through means other than argument and reasoning, that is, through ‘nudges.’ In these instances, he contends that they care little about patient understanding or communicating the truth about the options and, instead, care only about presenting alternatives in ways that cause patients to do what the physicians think they should do.2 However, doctors can intend to enhance patient understanding at the same time that they try to influence patients’ choices. Consider a physician who wants her patient to get a vaccine. …. (shrink)

Just last week (October 4, 2022), the U.S. White House released a blueprint for an A.I. Bill of Rights, consisting of “five principles and associated practices to help guide the design, use, and de...

Ms. P. is in the ICU with respiratory failure and sepsis. She has been on a ventilator for almost a week, and now has impending kidney failure. Her children, who have been taking turns at the bedsi...

This book review essay points to some of the more novel and controversial contributions of A Theory of Bioethics, by Joseph Millum and David DeGrazia (Cambridge University Press, 2021), such as their account of moral status. With a remarkable breadth of topics, the book is characterized by philosophical care and nuance and by spelling out the implications of the authors’ theorizing for real‐world, pressing questions, for instance, about the implications of Millum and DeGrazia's theoretical work on moral status for embryo (...) research, animal research with mice and apes, and human‐brain organoids. (shrink)

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with (...) refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

Questions about when to limit unhelpful treatments are often raised in general medicine but are less commonly considered in psychiatry. Here we describe a survey of U.S. psychiatrists intended to characterize their attitudes about the management of suicidal ideation in patients with severely treatment-refractory illness. Respondents (n = 212) received one of two cases describing a patient with suicidal ideation due to either borderline personality disorder or major depressive disorder. Both patients were described as receiving all guideline-based and plausible emerging (...) treatments. Respondents rated the expected helpfulness and likelihood of recommending each of four types of intervention: hospitalization, additional medication changes, additional neurostimulation, and additional psychotherapy. Across both cases, most respondents said they were likely to provide each intervention, except for additional neurostimulation in borderline personality disorder, while fewer thought each intervention would be helpful. Substantial minorities of respondents indicated that they would provide an intervention they did not think was likely to be helpful. Our results suggest that while most psychiatrists recognize the possibility that some patients are unlikely to be helped by available treatments, many would continue to offer such treatments. (shrink)

Health systems are integrating medical-legal partnerships (MLPs) into clinical care and increasingly center “complex care” patients. These patients have intersecting medical and social needs and often face systemic inequities that exacerbate their chronic health conditions. This paper describes a role for MLPs in hospital quality initiatives; examines the ethics of MLPs assisting with guardianship and institutionalization of hospital patients including marginalized groups; and advocates for MLP interventions designed to address intersectional and ethical concerns.

The American Board of Internal Medicine (ABIM) Foundation has recently initiated a campaign called “Choosing Wisely,” which is aimed at reducing “low-value” care services. Lists of low-value care services are being developed and the ABIM Foundation is urging the American Medical Association and other organizations to get behind the lists, disseminate them, and implement them. Yet, there are many ethical questions that remain about the development, dissemination, and implementation of these low-value care lists. In this paper I argue for (...) conceptual clarity with respect to the label “low-value care.” Thus far it has not been precisely defined, and I argue that there are actually 10 distinct categories of low-value care. I discuss the ethical challenges and considerations associated with each category. I also provide arguments that can be used to justify the reduction of some of these categories of low-value care. These arguments rely on Rawlsian and Hegelian notions of justice, as well as on concepts about the fiduciary obligations of physicians. Finally, I outline the various mechanisms that could be utilized for the reduction of low-value care (i.e., incentives, punishments, nonrational influences such as appeals to social norms, emotions, or ego, and creation of conditions that make avoidance easy such as defaults and reminders). I provide normative guidelines for the use of each. (shrink)

An analysis of the identity issues involved in facial allograft transplantation is provided in this paper. The identity issues involved in organ transplantation in general, under both theoretical accounts of personal identity and subjective accounts provided by organ recipients, are examined. It is argued that the identity issues involved in facial allograft transplantation are similar to those involved in organ transplantation in general, but much stronger because the face is so closely linked with personal identity. Recipients of facial allograft transplantation (...) have the potential to feel that their identity is a mix between their own and the donor’s, and the donor’s family is potentially likely to feel that their loved one ‘‘lives on’’. It is also argued that facial allograft transplantation allows the recipients to regain an identity, because they can now be seen in the social world. Moreover, they may regain expressivity, allowing for them to be seen even more by others, and to regain an identity to an even greater extent. Informing both recipients and donors about the role that identity plays in facial allograft transplantation could enhance the consent process for facial allograft transplantation and donation. (shrink)

The introduction of the Diagnostic and statistical manual of mental disorders in May 2013 is being hailed as the biggest event in psychiatry in the last 10 years. In this paper I examine three important issues that arise from the new manual: Expanding nosology: Psychiatry has again broadened its nosology to include human experiences not previously under its purview . Consequence-based ethical concerns about this expansion are addressed, along with conceptual concerns about a confusion of “construct validity” and “conceptual validity” (...) and a failure to distinguish between “disorder” and “non disordered conditions for which we help people.” The role of claims about societal impact in changes in nosology: Several changes in the DSM-5 involved claims about societal impact in their rationales. This is due in part to a new online open comment period during DSM development. Examples include advancement of science, greater access to treatment, greater public awareness of condition, loss of identify or harm to those with removed disorders, stigmatization, offensiveness, etc. I identify and evaluate four importantly distinct ways in which claims about societal impact might operate in DSM development. Categorisation nosology to spectrum nosology: The move to “degrees of severity” of mental disorders, a major change for DSM-5, raises concerns about conceptual clarity and uniformity concerning what it means to have a severe form of a disorder, and ethical concerns about communication. (shrink)

Background Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients’ families.Methods We conducted a secondary qualitative content analysis of audio-recorded family meetings from a multicenter trial conducted in the adult intensive care units of five hospitals from 2012–2017 to look (...) at how the term “suffering” and its variants were used. A coding guide was developed by consensus-oriented discussion by four members of the research team. Two coders independently evaluated each transcript. We followed an inductive approach to data analysis in reviewing transcripts; findings were iteratively discussed among study authors until consensus on key themes was reached.Results Of 146 available transcripts, 34 (23%) contained the word “suffer” or “suffering” at least once, with 58 distinct uses. Clinicians contributed 62% of first uses. Among uses describing the suffering of persons, 57% (n = 24) were related to a decision, but only 42% (n = 10) of decision-relevant uses accompanied a proposal to limit treatment, and only half of treatment-limiting uses (n = 5) were initiated by clinicians. The target terms had a variety of implicit meanings, including poor prognosis, reduced functioning, pain, discomfort, low quality of life, and emotional distress. Suffering was frequently attributed to persons who were unconscious.Conclusions Our results did not support the claim that the term “suffering” and its variants are used primarily by clinicians to justify limiting treatment, and the terms were not commonly used in our sample when decisions were requested. Still, when these terms were used, they were often used in a decision-relevant fashion. (shrink)

Legal theorists have characterized physical evidence of brain dysfunction as a double-edged sword, wherein the very quality that reduces the defendant’s responsibility for his transgression could simultaneously increase motivations to punish him by virtue of his apparently increased dangerousness. However, empirical evidence of this pattern has been elusive, perhaps owing to a heavy reliance on singular measures that fail to distinguish between plural, often competing internal motivations for punishment. The present study employed a test of the theorized double-edge pattern using (...) a novel approach designed to separate such motivations. We asked a large sample of participants (N = 330) to render criminal sentencing judgments under varying conditions of the defendant’s mental health status (Healthy, Neurobiological Disorder, Psychological Disorder) and the disorder’s treatability (Treatable, Untreatable). As predicted, neurobiological evidence simultaneously elicited shorter prison sentences (i.e., mitigating) and longer terms of involuntary hospitalization (i.e., aggravating) than equivalent psychological evidence. However, these effects were not well explained by motivations to restore treatable defendants to health or to protect society from dangerous persons but instead by deontological motivations pertaining to the defendant’s level of deservingness and possible obligation to provide medical care. This is the first study of its kind to quantitatively demonstrate the paradoxical effect of neuroscientific trial evidence and raises implications for how such evidence is presented and evaluated. (shrink)

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts (...) to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD. (shrink)

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and MethodsSemi-structured interviews (...) with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations. (shrink)

State prescription drug monitoring programs (PDMPs) use proprietary, predictive software platforms that deploy algorithms to determine whether a patient is at risk for drug misuse, drug diversion, doctor shopping, or substance use disorder (SUD). Clinical overreliance on PDMP algorithm‐generated information and risk scores motivates clinicians to refuse to treat—or to inappropriately treat—vulnerable people based on actual, perceived, or past SUDs, chronic pain conditions, or other disabilities. This essay provides a framework for challenging PDMP algorithmic discrimination as disability discrimination under federal (...) antidiscrimination laws, including a new proposed rule interpreting section 1557 of the Affordable Care Act. (shrink)

The concept of personhood has been central to bioethics debates about abortion, the treatment of patients in a vegetative or minimally conscious states, as well as patients with advanced dementia. More recently, the concept has been employed to think about new questions related to human-brain organoids, artificial intelligence, uploaded minds, human-animal chimeras, and human embryos, to name a few. A common move has been to ask what these entities have in common with persons (in the normative sense), and then draw (...) conclusions about what we do (or do not) owe them. This paper argues that at best the concept of “personhood” is unhelpful to much of bioethics today and at worst it is harmful and pernicious. I suggest that we (bioethicists) stop using the concept of personhood and instead ask normative questions more directly (e.g., how ought we to treat this being and why?) and use other philosophical concepts (e.g., interests, sentience, recognition respect) to help us answer them. It is time for bioethics to end talk about personhood. (shrink)

The application of machine learning in health care holds great promise for improving care. Indeed, our own team is collaborating with experts in machine learning and statistical modeling to bu...

ObjectiveTo evaluate the relationship between recently trained paediatricians' ethics knowledge and exposure to a formal ethics or professionalism curriculum during residency.MethodsWe conducted a cross-sectional survey of recently trained paediatricians which included a validated 23-item instrument called the Test of Residents' Ethics Knowledge for Pediatrics. The sample included paediatricians who completed medical school in 2006–2008, whose primary specialty was paediatrics or a paediatric subspecialty, and who completed paediatric residency training in 2010–2011. This sample was stratified based on (...) residency programme variables: presence of a formal curriculum in ethics or professionalism, programme size and American Board of Pediatrics certifying exam passage rate. Paediatricians were randomly selected from each stratum for survey participation.ResultsAmong the 370 responding paediatricians (55%), the mean knowledge score was 17.3 (SD 2.2) out of a possible 23. Presence of a formal curriculum in ethics and/or professionalism was not significantly associated with knowledge. Knowledge was lowest on items about parental requests for a child to undergo genetic testing (2 items, 44% and 85% incorrect), preserving patient confidentiality over email (55% incorrect), decision-making regarding life-sustaining technologies (61% incorrect), and decision-making principles such as assent and parental permission (2 items, 47% and 49% incorrect).ConclusionsThis study highlights several areas in which paediatricians' knowledge may be low and that are amenable to targeted educational interventions. These findings should prompt discussion and research among ethicists and educators about how ethics and professionalism curricula can more consistently influence paediatricians' knowledge. (shrink)

In “Revive and Refuse: Capacity, Autonomy, and Refusal of Care After Opioid Overdose”, Marshall, Derse, Weiner, and Joseph contend that patients who may appear to satisfy the standard criteria for...