In this introduction to this issue of The Journal of Clinical Ethics (JCE), I will discuss the legacy of our recently departed friend and colleague, Edmund D. Pellegrino, MD. In this light, I will discuss three articles in this issue of the journal that provide insight into the cultures of China, Mexico, and the U.S., and propose alternative approaches for careproviders in the U.S. to include in their practice as they work with patients and family members at the end (...) of life. (shrink)

I suggest that we may want to strive, over time, to change our present professional-cultural view, from one that sees an expression of moral distress as a threat, to a professional-cultural view that welcomes these challenges. Such an effort to better medicine would not only include dissenting clinicians, but patients (and their loved ones) as well.

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. (shrink)

Based on the experiences of the Hearts and Minds of Ghana authors, I present possible approaches to the ethical questions that clinicians who participate in health missions and disaster relief programs often face.

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.

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. (shrink)

Clinicians and ethicists routinely encounter complex ethical dilemmas that seem intractable, which have been described as ethical Gordian knots. How can they best assist patients and surrogate decision makers who are entangled in struggles around the capacity to make life-or-death treatment decisions? In this article I describe unconventional and unorthodox approaches to help slice through these dilemmas.

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

Patients and their family members may become highly interdependent as patients near the end of life. To best help these patients, healthcare providers can try to become a member of the patient/family team. By becoming a member, careproviders can improve patients’ and family members’ access to medical information, more effectively offer advice, and assure patients and family members that they can still choose to do what they think is best.

The author suggests that a “first generation” task in bioethics is to give patients the information they need; a “second generation” task is to do this in the most effective way; and a “third generation” task is to avoid harming patients by imposing value biases. The author discusses ways to pursue this third generation task.

I shall examine one way that careproviders may come to judgments of “futility” in cases that are less than clear-cut, in the hope that, if such judgment is unwarranted, it may be avoided.

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. (shrink)

Dementia is among the most terrible diseases humans can have. Of all of the things that careproviders could do to enhance the quality of life that persons with dementia have, which ones should they do?

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

Parents’ love for their child, even a child who has severe impairments, may give them much joy and quality in their life. This is also the case for caregivers of adults with severe cognitive impairments, such as end-stage dementia. How can clinicians work with these parents and caregivers and help them?

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. (shrink)