Mr. William Winthorpe, a 60-year-old patient, was admitted to the hospital with ischemic brain injury secondary to an unwitnessed cardiopulmonary arrest. He had a medical history of end-stage kidney, liver, and heart failure, needing chronic dialysis three times a week. In the first week at the intensive-care unit (ICU) after the arrest, a neurologist told Mr. Winthorpe's sons and daughters that, based on brain imaging, Mr. Winthorpe had no real chance of waking up or regaining any significant cognitive function. Although he was not brain dead, Mr. Winthorpe would have no significant cognitive recovery. The family was about to agree to withdraw aggressive therapies when the patient began to respond to external stimuli. These events occurred prior to my involvement as a clinical ethics consultant and set the context for the events that followed.
Several weeks after the arrest, and after the patient was discharged from the ICU to a regular hospital ward, a hospitalist requested a clinical ethics consultation. According to the hospitalist, the family did not understand the futility of current aggressive therapies. The hospitalist said Mr. Winthorpe sooner or later would die from an infection if not from his other end-stage organ diseases. At the time of the consultation the patient had begun to follow basic commands, which the family interpreted as the potential for meaningful recovery.
When I met with Mr. Winthorpe's family and medical team, the family expressed a desire to see how much cognition he could regain given that the original neurologist had been wrong about the impossibility of cognitive improvement.
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.
Micah Hester, reflecting on the case he presented in this book, eloquently articulates the notion of haunting presented throughout this volume:
Hauntings can … take the form of voices speaking to us, as warnings, as reminders; they can beg and plead. Hauntings are often presented as externally manifest, but they just as often find form as internal, persistent, nagging dialog. Hauntings are typically described as something which is feared, but it seems as plausible to see them as stimulants to reflection and concern, a reminder to be humble and a catalyst for intelligent deliberation.
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.
We did not know what a long day it would be when we first received the call. Joe DeMarco, a visiting scholar from a state university's department of philosophy, was talking with Paul Ford, a bioethicist at a large teaching hospital, about how initial responses were handled for ethics consultations. During this conversation, Paul answered a page. After a brief conversation, he hung up, saying in a perplexed manner that it had been only three days. We quickly left the office, with Joe's initial concern only a reflection of Paul's enigmatic observation, “It's only been three days.”
“What do you mean it's only been three days?” Joe asked, not realizing how many times we would hear that phrase over the next eight hours. Paul explained, “It's only been three days since surgery, and the family wants the patient removed from life support.” Paul looked pensive; perhaps “worried” is too strong.
The consultation was initiated by Nurse Abigail, who was caring for the patient at bedside. However, the actual consult page came from the intensivist, Dr. Bryan.
Nurse Abigail told us her concern about the patient's suffering and about the family's wishes related to discontinuing life-sustaining treatment being ignored. Clearly, the circumstances upset her; she seemed somewhat angry. That was tempered by her respect for, maybe fear of, the patient's surgeon.
Mr. Carl, a 60-year-old man, had open-heart surgery three days prior. He had multiple medical problems, including kidney failure. He required continuous ventilator support through the entire postoperative course, and Mrs. Carl reported that he only occasionally communicated.
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