The challenges of Mr. B’s clinical care are integrally tied to tensions in his own values and between his values and those of his clinicians. It is important to understand if Mr. B really wants to receive dialysis, but circumstances make it challenging to do so, such as trouble with transportation or lack of work accommodations. Alternatively, Mr. B’s intermittent participation may be a sign of ambivalence toward the value of the treatment. Exploring Mr. B’s values may help to determine what constitutes best care for him, even when clinically optimal treatment is not possible.

Case narrative

Baby Zelda’s 18-year-old mother had complications during pregnancy that included a urinary tract infection, prolonged ruptured amniotic membranes, fetal distress, and amnionitis. Baby Zelda was born prematurely at 25 weeks gestational age and was resuscitated and ventilated at birth. She needed antibiotics, transfusions, vasopressors, and analgesia. About a week after birth she developed necrotizing enterocolitis. Surgeons found an irreversibly non-functioning bowel with such extensive intestinal involvement that surgical resection could neither extend nor improve the quality of her life. Her pain, manifested in grimaces and writhing movements, was escalating despite aggressive pain management, and peritonitis developed. All members of her care team favored shifting to comfort care. They recommended that invasive and uncomfortable medical interventions be forgone and all therapies serve a single purpose – to keep Baby Zelda as comfortable as possible for the duration of her short life. Baby Zelda’s bedside nurses agreed that her pain was “as bad as anyone can remember for a patient in this NICU” (McCormick & Woodrum, 2008, p. 22). Baby Zelda’s young parents, self-described as “poor and used to living a simple rural life,” were stunned and believed Zelda would improve if aggressive medical treatment continued. As often happens, the providers continued life-sustaining treatment for several days to give Zelda’s grieving, devastated parents time to come to terms with the tragedy. When Zelda’s parents were unwavering in their insistence on continuing aggressive treatment indefinitely, the care team requested an ethics consultation (case, described above, comes from McCormick & Woodrum, 2008, p. 26).

What is an ethics consultation?

An ethics consultation is a service provided to patients, surrogates, parents, health care providers, and others involved in patient care to address “uncertainty or conflict regarding value-laden issues that emerge in health care” (Task Force on The Core Competencies for Healthcare Ethics Consultation, 2011). The goals of ethics consultation are to: (1) identify and analyze the ethical issues in clinical cases, policies, or practices; (2) facilitate conflict resolution in the interest of achieving ethically sound consensus; and (3) give those involved tools and information to assist them in addressing ethical issues in health care (Task Force on The Core Competencies for Healthcare Ethics Consultation, 2011).

Concluding comments

Micah Hester, reflecting on the case he presented in this book, eloquently articulates the notion of haunting presented throughout this volume:

His description encapsulates the variety of ways that authors characterized their haunting cases. In addition to the consultants being haunted, broad conceptual themes tie the cases in this book together. First, every author strives to act with integrity, which requires a combination of being true to oneself and one's profession, adhering to standards and rules, and remaining creative, flexible, and fair. At the beginning of this text, Macauley and Orr initiate the theme of integrity by telling a story of doubt, self-scrutiny, collaboration, forgiveness, and courage. Every subsequent essay implicitly or explicitly addresses personal or professional integrity. Authors describe challenges that a maturing profession should address. Sufficient time has elapsed for full consideration, debate, and incorporation of the American Society for Bioethics and the Humanities' The Core Competencies in Health Care Ethics Consultation, guidelines that have become our professional practice standards. The essays in this book demonstrate how these commitments to core standards “play out” in complex cases.

Introductory comments

The cases in this volume exemplify a rich cross-section of consultation experiences from which we can learn. The authors tell stories and share personal responses connected to deeply affective clinical ethics cases in which they consulted. None of these authors has selected an easy case. Ambiguity, second-guessing, and regret permeate their stories and reflections. They show great courage in laying bare such things as potential missteps, institutional impotence, and interpersonal struggles. Through their openness, we have amassed a rare collection of stories from which to learn about real-life challenges encountered by clinical ethics consultants in the incredibly complex world of contemporary health care.

Although overarching themes emerge in this volume, these cases should be read with an open mind since these themes may not be those stereotypically found in bioethics textbooks. Our cases identify challenges including uncertainty about decision-making capacity, limiting treatment requests, and obligations of healthcare providers to protect patients. The cases go beyond just tragedy. They touch on uncertainty, lack of power, and unclear professional boundaries that blend to create a mix of end-of-life, quality-of-life, organizational, and societal concerns. Naturally, the end-of-life cases represent a significant portion of this volume given the high stakes. In these end-of-life cases the endorsement of withdrawal of therapy comes alternately from families and healthcare providers. As we see from experience, the role played in a case, whether patient, family member, physician, nurse, or ethicist, does not always predict the source of a therapy-withdrawal request.