E. Howe

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.

In the documentary Boston Med, patients, their family members, and their careproviders agree to be filmed in real medical situations. Why would they do this? The possible answers to this question may help us to make sense of the paradoxical results of a recent study, in which patients with terminal illness ranked their careproviders highly for communication, even though the patients had failed to learn that they had a fatal illness. Based on this analysis, I offer careproviders a practical approach they can use to improve communication with patients, particularly to help patients to feel less alone. This same approach can also be applied in bioethics consultation.

Attention to the ethical concerns of healthcare aides can provide important information about patients’ needs to careproviders, improve the ethical environment of an institution, and benefit aides who suffer from bearing ethical concerns alone. All persons benefit from sharing their ethical concerns with others. Among other benefits, ethics consultation offers careproviders, caregivers, healthcare aides, patients, and patients’ loved ones an opportunity to have their concerns heard.John Fletcher tried to follow every ethics consultation with a debriefing for all participants, including patients and family members, to increase the possibility for continued healing after the conclusion of the consultation, and there are good reasons to follow this practice.

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.”