E. Howe

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.

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.

How can clinical ethics consultants best assist patients and their family members when patients may be dying? In this introduction, I consider this concern in light of four articles that appear in this issue of The Journal of Clinical Ethics, by Jeffrey T. Berger; Mary T. White; Linying Hu, Xiuyun Yin, Xiaolei Bao, and Jin-Bao Nie; and Thaddeus Mason Pope and Melinda Hexum.Patients and family members experience extreme stress at the end of life, a high-stakes situation in which few of us have extensive experience. This stress can make us less able to process new information, cripple decision making, and even lead to long-term harm.I provide a number of practical approaches that clinical ethics consultants can use to help patients and family members in these situations, so that their decisions may reflect more what they really want and so that, after this stress has diminished, they may then do better.

Parents may experience profound stress when their infant is extremely premature or has exceptionally low birth weight. This article presents several approaches that clinicians and ethics consultants can use to reduce this stress when a parent is single and alone, as well as when both parents are present. Offering parents additional options, taking preventative measures, and using approaches based on recent innovations in psychotherapies are emphasized. Since the clinicians who care for these neonates may find it exceptionally stressful and may experience “burn out,” especially over time, this article also addresses what may work best for them. Finally it will discuss clinicians, who, despite their best efforts, find that caring for these infants is simply too painful to bear.

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.

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.

It may be difficult to imagine having a severe impairment such as quadriplegia or being dependent on a respirator. There is evidence that when careproviders make treatment decisions for patients who are in these situations, we imagine the patients are worse-off than they report they are—most patients with even very severe impairments report that they greatly value being alive.1 This misperception may cause us to make treatment decisions for patients with impairments that we might not make for other patients. In this article I describe how to provide better care for patients who have impairments. This includes not presupposing that the patients’ quality of life is decreased, considering with patients how outside factors may be limiting their functioning, and seeking to help offset these factors, if we can, when they exist, to avoid allowing patients’ impairments to result in their being truly “disabled.”

When clinicians provide clinical care or participate in ethics consultations, they may feel exceptionally painful emotions. When they do, they may distance themselves emotionally from patients and families. This distancing may harm these parties profoundly. It is therefore critical that clinicians avoid this distancing. In this piece, I present an approach that lies outside traditional practice that clinicians may use to try to avoid and even reverse this distancing, if and when they sense that this may be occurring. This approach may also benefit patients and families. It may increase their sense that their clinicians are working with them as allies to achieve their shared medical goals.

Clinicians and patients and their families may disagree about a course of treatment, and the ensuing conflict may seem intractable. The parties may request mediation, or use mediation-based approaches, to help resolve the conflict. In the process of mediation, and at other times, parties in conflict may feel so pressured to accept a resolution that they acquiesce unwillingly—and such resolutions often unravel. In this article I investigate how “bullied acquiescence” might happen, and how to avoid it.

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.

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.

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.

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 difficult decisions a clinician may face is when, if ever, to decline what a patient wants, based on the clinician’s own moral conscience. Regardless of what the clinician decides, the outcome may be deeply emotionally painful for both parties, and the pain may last. I will discuss this pain, how it occurs, and what we can do to try to reduce it before, during, and after a conflict arises. Approaches include explaining how we are like the patient or doctor, that no one is perfect, and that what we do is not who we are.

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.

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.

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.

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.