E. Howe

Medical aid in dying (MAID) is legal in 11 U.S. states and the District of Columbia, with 16 other states engaged in proposed legislation. Americans now have a meaningful opportunity to alter the quality of their final days. Fears that disadvantaged patients would be coerced into using MAID have been at the forefront of the legalization debate for decades. A total of 28 years have elapsed since Oregon first implemented its legal use in 1998. The most accurate narrative around the controversial practice emerges from examining the recent data from nine reporting states where MAID is legal. The details about patients who have used it shed light on the conversation; they include ethnicity, age, sex, level of education, socioeconomic status, hospice enrollment, diagnosis, rationale for choosing MAID, knowledge about it, interest in it, and rate of use. The numbers illustrate a story of access inequity and barriers to end-of-life care that mirror the inequities across U.S. healthcare. This article reviews the main arguments for and against MAID, presents reported data on MAID recipients, and discusses the implications. The debate continues unabated. The current data and ideas presented here aim to inform ethicists, healthcare professionals, and lawmakers, who together have an opportunity to reshape the narrative around end-of-life care in the United States.

In introducing this issue, I address several ethical issues related to reproduction, and particularly those that involve recent changes in U.S. state laws. I discuss also how those teaching ethics may best respond when students have values they view as sacred, such as those involving abortion. I urge teachers to strive to help such students feel safe and relate how and why. I describe errors providers and teachers make when teaching ethics that stem from their tendency to unduly and reflexively overly rely on laws, rules, and authorities, one of which involves their overvaluing also the status quo or what is widely known as the “is” over the “ought.” I emphasize the importance of providers assuming that patients and families have valid reasons underlying what they believe, and thus that providers should seek to discover these reasons and share them explicitly to indicate their understanding or that they still remain in the dark. I suggest that providers consider and take into account both their own moral values and their differing emotional sensitivities, but that, notwithstanding these, they defer most decisions to their patients and families. They, after all, must live with whatever they decide, whereas medical personnel will not.

In this piece, I address two topics, both built on articles in this issue. The first involves a new, possibly more effective approach that ethics consultants may use when they want to tell the providers consulting them that they think they should treat a patient differently. These authors call this approach “curious engagement.” The second topic I discuss involves what moved the above authors to want to imagine and then propose this new approach, since what moved them may similarly move others to also want to innovate. I suggest that the best way to identify ethical practices needing improvement is to look to painful emotions experienced by oneself or others. I give two clinical examples further illustrating how providers may do this. The first involves the provider evaluating a patient for the interests of a third party, not for this patient’s interests. The patient here feels frightened and alone. The second is taken from another article in this issue and involves a patient just waiting to die and experiencing existential angst. Both cases show how our looking to painful emotions may suggest areas in which new and better ethical practices are needed, as well as whether, once proposed, providers will adopt them or not.

This chapter uses the film _Frankenstein_ (1931) to set the stage for a discussion of research in general, and more particularly, how researchers should treat research participants. The key ethical conflict in research ethics is the need to balance the need to obtain findings beneficial to others with the need to respect and protect the rights of participants. Doctors engaged in research may have to draw certain lines between the needs of their research and the needs of those who participate in it. Some research contexts also prevent researchers from giving information as frequently as they would to individual patients in their clinical care. Doctors conducting this research, then, might be less able to tailor their clinical interventions to patients' individual and even idiosyncratic personal needs. Even when researchers can give participants as much information as they want, this itself may be ethically problematic. Some participants may want extensive information regarding the research's potential benefits and risks, while others may find this same amount of information overwhelming and unduly stressful. Therefore, researchers must determine the right amount of information to give in every protocol.

In this issue of The Journal of Clinical Ethics, persons who knew bioethicist and lawyer Nancy Dubler celebrate her and the most important contributions she made to the practice of clinical ethics consultation (CEC). Her insights and the many discussions here include the unmet needs of prisoners, optimal approaches to bioethics mediation that prioritize the feelings of and relations between people, ethics consultants asking families of patients who can’t speak for themselves what the patient was like as a person before they discuss ethics, allocating resources consistently and fairly, learning CEC by role-playing in disempowered roles, distinguishing what is ethical from what is legal, increasing contributions from nonmedical people, increasing interconnections between health systems and the broader bioethics community, replacing oral feedings with tube feedings, fostering substitute decision makers whom patients most want, and appreciating root causes of patients’ and families’ mistrust. All these topics are likely to be optimal CEC practices, if not already implemented.

As we go to press, the threat of biological or chemical warfare in the Persian Gulf is no longer imminent. Yet the questions raised by the proposed use of “investigational drugs,” without informed consent, to protect U.S. troops remain. The article by Edmund G. Howe and Edward D. Martin presents the arguments that informed the Pentagon's thinking on the subject. It and the commentaries, by George J. Annas and Michael A. Grodin, and Robert J. Levine, explore, among others, issues of informed consent, of distinguishing ‘research’ and ‘treatment,’ and of the nature and extent of the autonomy of military personnel.—B‐JC, HLN.

This piece builds on research conducted and reported in this issue in which nursing students underwent simulation training to increase their confidence when discussing ethical conflicts with physicians. I discuss here the general importance of nurses and physicians finding ways to work optimally together, especially when they face difficult ethical dilemmas involving patients. These providers reducing any emotional conflict they might have with each other is critically important for several reasons. Chief among these reasons are the direct harm this will cause these patients, due to their feeling increased tension, and also, as a result of this increased tension, their thinking less clearly regarding their utmost medical needs and wants. I discuss why this need is increased when ethics decisions are at stake, and I suggest three specific practical approaches that providers in both groups can use to enhance their ability to interact more harmoniously and synergistically with each other. They can immediately adopt these suggestions in their clinical practices. Their ability to use these suggestions most effectively will, however, continue to increase if and as they continue to use and practice them over time. The positive outcomes for providers using these approaches, even for just a few minutes, may surprise them. Though brief, the difference these approaches can make may be disproportionately substantial. Encounters they dreaded, instead of being confrontational, may become caring, rewarding, and productive.

In this issue Autumn Fiester and several other experts explore optimal ethical approaches to surrogate decision-making and trauma-informed ethics consultation (TIEC). Trauma-informed care is currently recommended in many clinical contexts in which the risks of patients being traumatized by their illness and its treatment are present. This care gives priority to patients feeling safe, an asymptotic goal that prescribes no one standard practice for all patients, but one that prescribes individualized treatment tailored to each patient’s idiosyncratic needs. Core points Fiester makes are how patients are especially prone to feeling traumatized when others, as is always the case with their providers, have greater power over them and the rarely considered conclusion that although providers have exceptional medical expertise and experience, this does not necessarily provide them with greater ethical expertise than their patients or others. Fiester’s most radical contention may be that providers, including ethics consultants, give priority to patients’ and surrogate decision makers’ feelings. I discuss here these contentions and Fiester’s main aim of first creating and then maintaining trust and caring feelings between all parties, no matter how much initially they may disagree. I discuss, too, how legally her suggestions may be implemented immediately.

In this introduction I discuss several ethical issues pertaining to the question other authors raise regarding whether we should permit minors to donate an organ—such as part of their liver or a kidney—to a sibling. I discuss particularly limits of what ethical analysis can accomplish; overriding, disproportionate effects of what might appear to be no more than minor nuances; exceptional expertise “ethics experts” can and can’t offer; how patients’ and family members’ feelings may prevail over rational arguments; the importance of recognizing and respecting patients’ felt relationships with others; and our global obligations to people worse off. A core feeling considered is a child’s feeling of guilt if the child doesn’t donate and this sibling dies. A nuance considered is a sibling wanting to donate to an identical twin. I consider some providers’ bias that an intervention is death prolonging rather than life prolonging. When providers arrive at an impasse and continue to reasonably differ, switching the question to how an ethical resolution should be reached and by whom is recommended. Practical applications such as this that can be implemented by providers now are offered in regard to each of the ethical issues addressed.

Patients’ spiritual views and, more generally, the meaning they feel in their lives is often, if not always, most important to them, especially when they have serious illness. Yet there are no standard requirements for providers to explore with patients their spiritual needs. Providers’ views regarding their both taking initiatives to explore with patients needs and then to discuss with them their religious concerns if they want this vary widely. This piece explores, then, the extent to which providers should take these initiatives and, if they have this interest, whether as providers they should carry on these discussions or refer these patients, always, to clergy persons, as some providers adamantly advocate because they have expertise in this area that providers lack. This piece goes on to discuss whether providers believe they should have these discussions even when their patients’ beliefs differ greatly from their own. In exploring this question, examples involving patients with Muslim, Hindu, and Christian beliefs are considered. Beliefs reported by some people from Germany and Israel regarding physician-assisted dying also are reported and compared, illustrating that patients’ and people’s beliefs cannot be reliably just inferred. Practical approaches, finally, are suggested.

This piece discusses several ways in which providers may advocate for patients and their families that go beyond what providers usually do to help their patients. A much more expanded view of advocacy is suggested. Real cases illustrating all interventions suggested are presented, and each is paradigmatic of numerous others. Categories of possible options suggested for expanded advocacy include (1) providers enhancing patients’ outcomes when standard treatments have failed, (2) providers taking measures outside those they usually take to benefit patients to a greater extent, and (3) providers sacrificing their own needs more than they customarily do to help their patients still further. The suggested interventions are practical and can be implemented immediately. Taken together, the interventions proposed are also aspirational.

Whether providers should ever help patients die when they profoundly suffer from seemingly irreversible psychiatric illness is globally controversial. For example, in 2016, the American Psychiatric Association held that psychiatrists should never help bring about such patients’ deaths, whereas in the Netherlands this intervention has been permitted for 30 years, and the number has increased from 2 in 2011 to 83 in 2017. This commentary asks when, if ever, providers should give up on seeking to treat these patients. Providers who have been exceptionally successful at reaching and helping these patients and some of the approaches they used are presented. These include particularly their helping these patients see meaning in their lives, using humor, and understanding them or at least trying to. I propose that establishing a felt connection may always remain possible and that this end may be a more important goal than any other.

In this piece I discuss optimal approaches that providers may take when pursuing surrogate decision-making. A potential critical problem here is some providers’ approach differing from that of others. To the extent that this occurs, the results may be arbitrary, and the harm from this may be profound since this may affect, of course, even whether some of these patients will live or die. One factor possibly resulting in these differences is the moral weight providers place on what family members want when these outcomes differ from what they think patients would want. Providers now most commonly place greatest moral weight on following what patients would want to maximally respect their autonomy, but this view may clash with the view of others who see autonomy as more relational and thus based on prior and present social relations with others. Giving family members’ wants more moral weight is a radical departure from what providers do now and may increase these differences. I discuss here the rationales for and against these competing choices.

Patients who face making a high-stakes decision—whether or not to accept a lifesaving intervention—may make a decision that their careproviders believe is deeply and dangerously mistaken. How can careproviders best help patients in such situations?If a determination of competency exam seems to be in the patients’ best interests, how can careproviders refer their patients without betraying their patients’ trust, given that the trust between patients and careproviders is one of the most powerful tools careproviders have in working with patients? Ethically, is it possible for careproviders to participate in determinations of competency for their own patients?I will present approaches that careproviders can adopt to help patients who “won’t budge” when making what appear to be dangerously erroneous choices regarding lifesaving interventions.

Psychedelic treatments, particularly 3,4-methylenedioxymethamphetamine (MDMA)-assisted and psilocybin-assisted therapies, have recently seen renewed interest in their clinical potential to treat various mental health conditions. Clinical trials for both MDMA-assisted and psilocybin-assisted therapies have shown to be highly efficacious for post-traumatic stress disorder and major depression. Recent research trials for psychedelic-assisted therapies (PAT) have demonstrated that although they are resource-intensive, their effects are rapid-acting, durable and cost-effective. These results have generated enthusiasm among researchers seeking to investigate psychedelic therapies in active-duty service members of the US military, particularly those with treatment refractory mental health conditions. At the same time, psychedelics remain in early stages of clinical investigation, have not yet achieved regulatory approval for general clinical use and may confer unique psychological and neurobiological effects that could raise novel ethical considerations when treating active-duty service members. Should psychedelics achieve regulatory approval, military relevant considerations may include issues of access to these treatments, appropriate procedures for informed consent, confidentiality standards, and possible unanticipated mental health risks and other psychological sequelae. A service member’s deployability, as well as their ability to return to full military duty following PAT, may also be of unique concern. The authors argue that MDMA-assisted therapy currently represents a promising treatment that should be more rapidly investigated as a clinical therapy for service members while still taking a measured approach that accounts for the many military-specific uncertainties that remain.

This introduction to The Journal of Clinical Ethics highlights and expands four articles within this issue that propose somewhat new and radical innovations to help and further the interests of patients and families worst off. One article urges us to enable historically marginalized groups to participate more than they have in research; a second urges us to allocate limited resources that can be divided, such as vaccines and even ventilators, in a different way; a third urges us to help families find greater meaning when their loved ones are dying; and a fourth urges us to treat patients who illegally use drugs as caringly as is possible, though there may be limits to what providers can do. This piece also addresses the importance of providers bonding with patients, recognizing that some providers may be better at eliciting patients’ trust than others, and thus the importance of connecting these patients with these providers since this may be the sole way these patients can optimally respond and do well. Finally, providers taking time away from their patients to oppose and reduce social stigma is considered.

This piece discusses perhaps the most agonizing ethical decision ethics consultants and other providers encounter. This is the extent to which providers should defer decisions to patients or to their proxy decision makers as opposed to imposing their own views as to what they think is ethically right. It discusses the most difficult issues these providers may encounter, especially when they wish to depart from authoritative bodies’ standards or guidelines, and it presents initial steps providers may take to help patients and their families work together to resolve these dilemmas more harmoniously. It highlights how providers may inadvertently impose flawed biases on patients and families. Finally, it discusses how providers should take initiative with both parties to offer to help appeal when these avenues already exist and seek to establish the appellate procedures when they are absent.

In this piece I discuss two ways in which providers may become able to treat patients better. The first is for them to encourage all medical parties, including medical students, to always speak up. The second is to take initiatives to learn of pain that patients feel but neither show nor spontaneously report. They may refer to this pain as invisible pain, often bitterly, in that others not seeing their pain judge them wrongly and harshly. Providers, once seeing this pain, are encouraged to then take additional measures to try to alleviate it. Clinical examples provided to illustrate the range of treatments providers may add are post-traumatic stress disorders, problems involving substance use, and hoarding disorders. Similar concerns regarding people who are deaf and hard of hearing are also addressed.

In this piece I discuss when care providers should not contact suicidal patients’ families to get collateral information from them or hospitalize patients over their objections. I suggest that when these patients are chronically suicidal, overriding these wants may be best in the short run but increase their net risk in the longer run. I also discuss in this regard how contacted families may become overprotective and how hospitalization can be traumatic. I present an alternative approach that can increase these patients’ safety over the longer run and relate three practical approaches care providers may find useful: explaining their decisions to patients, monitoring their own fear, and instilling hope.

Since some care providers give colleagues’ interests priority over patients’ and families’, they are at risk of imposing their bias on patients without knowing this. In this piece I discuss how the risk increases when care providers have greater discretion and how they can best avoid this risk. I discuss identifying these situations, assessing them, and then, based on what they have concluded, intervening and use their having inadequate resources, their seeing what patients want as futile, and their making decisions regarding surrogate decision makers as paradigmatic examples. As “remedies,” I suggest that care providers share with patients their rationales, validate adaptive aspects of difficult behaviors, self-disclose, and sometimes even go beyond their usual clinical practices.

This article discusses how careproviders of all types can help people with differences of sexual development (DSD): people with ambiguous genitalia, who used to be referred to as intersexed. Careproviders may be in a unique position to benefit these people by offering to discuss difficult issues that concern them, even when the discussions are brief. Specific interventions include learning about people with DSD, whether through the literature or in the clinic; treating them with optimal respect; raising difficult topics such as sex, fertility, and social stigma; encouraging them and helping them to meet others with DSD; and sharing the strengths that we can see that they have. We have come far, but have a long way to go.

This introductory article presents some subtle and, perhaps, controversial aspects of providing care to adolescents who identify as transgender. I will describe (1) how praise from careproviders can benefit parents who have difficulty accepting the gender identity of their child that was not assigned at birth; (2) how adolescents who identify as transgender may follow the internet advice of peers on how to “con” careproviders; (3) how it may be difficult for careproviders to decide whether to further patients’ felt needs and to protect them, paternalistically, from making an irreversible decision they may later regret; and (4) how careproviders can benefit adolescents by taking the initiative to discuss sex and how to say “no.” I emphasize how careproviders who see these patients, even when they have no special expertise in this area, may be able to enhance patients’ equality in every respect, even when they otherwise might not choose to do so.

After COVID-19 first began to spread in the United States, dentists developed new guidelines that limited whom they could treat under these emergency conditions. Patients who faced greater limits to accessing treatment included children. Using a case of a child who was not able to access treatment, I discuss how careproviders might best seek to maintain their emotional bonding with patients and their loved ones, even if they must turn them down for an intervention.I also address whether and when to give patients and their loved ones warning that access to treatment could be limited, using illness caused by COVID-19 as an example of how careproviders may better anticipate patients’ needs at all times.Finally, I discuss careproviders’ needs. I suggest that medical professionals’ culture should make it as easy as possible for them to acknowledge their feelings of vulnerability, so that they may better determine, in times of disaster, whether they should treat or triage patients. Careproviders who triage may choose to share with patients and loved ones that they also feel pain when they deny patients an intervention.

One of the most important and difficult tasks in medicine is to determine when patients have the capacity to make decisions for themselves. This determination may determine a patient’s life or death. This article presents criteria and approaches now used to make this assessment and discusses how these approaches are presently applied in five common disorders that can serve as paradigms for approaches in other disorders. I propose that since there are new diagnoses and treatments, reconsidering our current practices is warranted. The possibilities that clinicians can nudge patients to make better choices for themselves and, above all, that clinicians can maintain and maximize positive patient/careprovider relationships during and after these assessments, are emphasized.

The primary task of ethics consultants is to work with patients—and sometimes also their families—to discern and then meet patients’ and families’ needs and wants to the extent possible. That is primarily a cognitive endeavor. Yet the feelings of patients and ethics consultants may determine what they can work together to accomplish. This article considers their feelings. It looks at sources of distrust and their hopedfor resolution, specific means to enhance patients’ decision making in their relationship with ethics consultants, and a new, highly different approach that may enhance their relationships more than most commonly used ways of relating.

This article focuses on three different ways that we may demean people by seeing them as less than they are, and describes ways we may best avoid doing this. More specifically, I explain how we may not see the physical and emotional issues that plague patients and others. This may be because they choose not to disclose their difficulties to us. We may also err when we see only one aspect of who and how others are. These challenges pose ethical quandaries that involve equity, improved communication with patients, and subjecting ethical principles to empirical study before we adopt them. I explore the means to do these.

A face transplant is as challenging a surgical procedure as any patient can undergo. In this introduction I present the medical aspects of this surgery, the profound ethical issues it raises, and optimal interventions that clinicians can pursue to help these patients and their loved ones. I then discuss how to help other kinds of patients and loved ones who confront similar stresses. I end by presenting a goal that author Sharrona Pearl puts forth after she studied many face transplant patients. The efforts she urges should maximize our capacity to see face transplant patients—and anyone—as they are, as opposed to how they look.

Lainie Friedman Ross suggests that clinicians increase our efforts to meet children’s most basic needs in several ways. These include prioritizing, to a greater extent, children’s present and future feelings; placing greater decisional weight on other family members’ needs; spotting earlier threats from surrogate decision makers so that we can better prevent these threatened harms; and finding ways to intervene earlier so that we can allow parental surrogate decision makers to remain in this role. I offer some practical ways in which Ross’s ideas might be applied.

There have been many advances in clinical ethics over the last three decades, since The Journal of Clinical Ethics first came about. This issue of JCE notes some of them. Fortuitously for this goal, new requirements for doing research just have been published, and the leading United States research ethics meeting has just concluded. The conference offered edge-of-the-field presentations in research ethics, and indicates where we should go beyond this edge: what we still have to do. In this article I build upon foundations to explore what they imply for what we should do now in our clinics.