E. Howe

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.

Patients’ and families’ greatest need is often to do what for them is most meaningful. This may be, for example, their religion, their family, or their doing good for others. This piece will explore ways in which care providers may help maximize these ends. Paradigms offered will include Jehovah’s Witness patients needing kidney transplants, a transgender adolescent wanting his sperm preserved, care providers’ deciding whether to disclose that a deceased organ donor had HIV, and care providers seeking to do good for children profoundly impaired and adults who feel shame for just existing.

Clinical ethics consultants (CECs) must know key moral principles and have adequate psychosocial skills. This is, though, not enough. They must also have and hone “between-the-lines” skills that will change over time. This article discusses seven of these skills that CECs need before, during, and after consultations. They have in common the unusual primary goal of maximizing CECs’ ability to bond with the patients and families with whom they consult. A focus on relationships, rather than on ethical outcomes, may paradoxically enhance the possibility of achieving an ethical outcome.

Shared decision making (SDM) is the state of the art for clinicians’ communication with patients and surrogate decision makers. SDM involves give and take, in which all parties interact to maximize the autonomy of patients. In this article I summarize the core steps of SDM and explore ways to use it to benefit patients to the greatest extent. I review three articles included in this issue of The Journal of Clinical Ethics that highlight additional approaches we can use to help patients and parents to see what may be in their own or their child’s best interest. I describe how these approaches can be used in most other medical fields. I explore ways to share information with patients that are outside the usual scope of SDM. Finally, I discuss how we might look, together with patients, at what all parties are feeling before we begin the process of SDM.

Consensus documents may be extremely helpful. They may, however, also do harm. They may, for example, suggest interventions that are less than optimal, especially when they apply to patients whose situations are at the “outer margins” of their applicability. Yet, even in these instances, clinicians and ethics consultants may still feel pressure to comply with a guideline. Then, we may not do what we think is best for our particular patient because we fear departing from a guideline. In this article I discuss the risks of departing from guidelines and suggest what we can do to overcome those possible risks. I suggest that while guidelines may help, we should continue to put, above all else, tailoring our interventions to our patients’ individual needs and wants. With our patients, together, we should decide what to do, notwithstanding what the most applicable guidelines propose.

The COVID-19 pandemic may have left many of us needing closeness with others more than we have before. Three contexts in which we may especially need this closeness are (1) when we must triage and some but not all will benefit, (2) when families may be separated from loved ones who have COVID-19, and (3) when people for any reason experience shame. In this article I examine sources of present, harmful emotional distancing. I suggest how we might do better in each of these contexts due to what the COVID-19 pandemic can teach us.

In this article I will discuss how clinicians might best treat adolescents who may die. I initially discuss these patients’ cognition, emotional tendencies, and sensitivity to interpersonal cues. I next discuss their parents’ feelings of loss and guilt and their clinicians’ risk of imposing their own moral views without knowing this. I then address the practical concerns of helping these patients gain or regain resilience and to identify strengths they have had in the past. I finally explore who, among staff, might be best able to do this. I highlight as the main goal that patients, their parents, and ideally also their clinicians are able to come to agree on the best course the patients should take.

Alzheimer’s disease is singularly tragic in that it may rob patients of much or all of their personal identity. Some persons fear this outcome so much that they talk of wanting to find the “sweet spot,” a time midway in the course of everincreasing dementia, during which they are able to foresee a possible loss of identity in sufficient time to end their life before they lose the capacity to choose to do so, and before further devastation occurs. This article presents the belief of some experts that patients always retain a basic, core underlying awareness. Practical approaches that careproviders and caregivers can take to maximize patients’ quality of life are discussed. The possibility that patients and loved ones can find meaning in last months and years of life is emphasized.

As new technologies develop, new ethical paradigms may be needed. This article considers several examples, such as stopping venoarterial extracorporeal membrane oxygenation (VAECMO), treating patients who are in a locked-in-like state who have awareness, purposefully deceiving patients who have dementia, meeting the needs of transgender persons, showing loved ones patients’ wounds, and doing research on controlled substances. I suggest that clinicians should identify the practices underlying their value assumptions so they can alter their assumptions when this might improve the care they offer to their patients.

Physicians who are impaired, engage in unprofessional behavior, or violate laws may be barred from further practice. Likewise, medical students may be dismissed from medical school for many infractions, large and small. The welfare of patients and the general public must be our first priority, but when we assess physicians and students who have erred, we should seek to respond as caringly and fairly as possible. This piece will explore how we may do this at all stages of the proceedings physicians and students may encounter. This may include helping them to resume their medical careers if and when this would be sufficiently safe and beneficial for patients.

A recently enacted law permits patients to see their electronic medical record (EMR) immediately after their careprovider writes in it. In this article I discuss a proposal that authors make in this issue of The Journal of Clinical Ethics, that ethics consultants (ECs) keep their notes in a separate section of the EMR that patients cannot access when their ethics notes may be troubling to patients, to avoid unduly harming them.I discuss this concern and three more widely applicable clinical goals: to help patients feel safe; to gain patients’ trust; and to provide hope to patients, when possible. These goals apply to careproviders and ECs who seek to help patients and families resolve ethical conflicts. I explain why these goals are singularly important and how careproviders may pursue them, using as an example informing patients about temporal framing to help them find hope.

This piece discusses ways in which clinicians may go beyond their usual practices. These include exploring the limits of old laws, consulting with colleagues and ethics committees earlier and more often, and giving patients’ family members new choices they didn’t have previously. This could include asking patients and family members whether clinicians should prioritize staying in the single, unconflicted role of serving patients and families, even when this might preclude simultaneously serving another interest, for example, that of a hospital.

Stress can make the comprehension of complex information more difficult, yet patients and their family members often must receive, process, and make decisions based on new, complex information presented in unfamiliar and stressful clinical environments such as the intensive care unit. Families may be asked to make decisions regarding the donation of organs and genetic tissue soon after the death of a loved one, based on new, complex information, under tight time limits. How can we assist patients and families to better process complex information while under stress, and make better decisions for themselves or a loved one?