E. Howe

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.

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.

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.

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?

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.

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 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.