E. Howe

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?

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.

How might clinicians best try to retain the trust of patients and family members after clinicians oppose giving a treatment? If clinicians can maintain the trust of patients and families in these situations, this may soften what may be the greatest possible loss—the death of a loved one.I discuss what clinicians seeking to retain trust should not do—namely impose their values and reason wrongly—and introduce strategies that clinicians may use to reduce both. I present five principles that clinicians can follow to try to retain trust, with examples that illustrate each. I suggest specific interventions that clinicians can make, especially when they anticipate that a patient and/or family may, in time, want a treatment that is futile.

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.

Ethics consultants’ grasp of ethical principles is ever improving. Yet, what still remains and will remain lacking is their ability to access factors that lie outside their conscious awareness and thus still effect suboptimal outcomes. This article will explore several ways in which these poor outcomes may occur. This discussion will include clinicians’ implicit biases, well-intentioned but nonetheless intrusive violations of patients’ privacy, and clinicians’ unwittingly connoting to patients and families that clinicians regard their moral values and conclusions as superior. I shall suggest several ways in which clinicians may seek to reduce these sources of bad outcomes or at least to do better when they occur.

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.

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.

In this special issue of The Journal of Clinical Ethics, different views on both the ethical desirability of women delivering in hospitals or at home with midwives are discussed. What careproviders, including midwives, should recommend to mothers in regard to the place of giving birth is considered. Emotional concerns likely to be of importance to mothers, fathers, midwives, and doctors are also presented. Finally, possible optimal approaches at the levels of both policy and the bedside are suggested.

The author describes an alternative approach that careproviders may want to consider when caring for patients who request interventions that careproviders see as futile. This approach is based, in part, on findings of recent neuroimaging research. The author also provides several examples of seemingly justifiable “paternalistic omissions,” taken from articles in this issue of The Journal of Clinical Ethics (JCE). The author suggests that while careproviders should always give patients and their loved ones all potentially relevant information regarding “futile” decisions, careproviders may wish to consider, paradoxically, not giving advice in these situations, when the advice is based mostly or wholly on their own moral views, based on this same, ethical rationale.

In this issue of JCE, Baum-Baicker and Sisti present senior psychoanalysts’ views of wisdom.Although views on wisdom differ widely, there is agreement that when ethical conflicts arise, wisdom may be critical in bringing about an optimal result. Here I will present recent empirical findings on wisdom and the ways careproviders may acquire and apply it, especially in ethical conflicts. The findings are not well-known and may seem counterintuitive; I selected them, in large part, for those reasons. A core challenge may be to decide when to give patients standard care and when to make exceptions. In this issue of JCE, Baum-Baicker and Sisti discuss exceptions and Bursztajn and colleagues consider how these exceptions may be further validated as evidence-based treatments

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.