Trevor M. Bibler

Responding to Those Who Hope for a Miracle: Practices for Clinical Bioethicists

Significant challenges arise for clinical care teams when a patient or surrogate decision-maker hopes a miracle will occur. This article answers the question, “How should clinical bioethicists respond when a medical decision-maker uses the hope for a miracle to orient her medical decisions?” We argue the ethicist must first understand the complexity of the miracle-invocation. To this end, we provide a taxonomy of miracle-invocations that assist the ethicist in analyzing the invocators conceptions of God, community, and self. After the ethicist appreciates how these concepts influence the invocators worldview, she can begin responding to this hope with specific practices. We discuss these practices in detail and offer concrete recommendations for a justified response to the hope for a miracle.

Why I No Longer Say “Withdrawal of Care” or “Life Sustaining Technology”

Last spring I presented the story of a recently deceased man, I’ll call him Mr. Rivers, to the attendees at the Vanderbilt’s bimonthly ethics consultation case presentation. This young man (only 48 years old) had undergone a triple coronary artery bypass graft surgery (CABG) in Vanderbilt’s Cardiovascular Intensive Care Unit (CV-ICU) a few weeks before my presentation. Half an hour after the CABG Mr. Rivers went into cardiac arrest as his grafts failed. After realizing this failure, Mr. Rivers’ surgical team performed CPR (internal and external) for nearly an hour. The team eventually provided extracorporeal membrane oxygenation (ECMO) and implanted a BiVAD, a ventricular assist device. He continued to get worse despite these efforts, developing an infection and sepsis while his kidneys failed. On the third day after Mr. Rivers’ surgery, a CV-ICU nurse practitioner spoke with the attending ethics consultant and me. She, the nurse practitioner, was not certain that Mr. Rivers’ family, specifically, his sister and surrogate decision maker ‘‘Mrs. London,’’ understood how much damage Mr. Rivers’ heart (and probably brain) had suffered as the grafts failed. By the end of a long conversation that same day, it became quite clear to us that Mrs. London understood that her brother had nearly no chance of leaving the CV-ICU in a conscious state, never mind riding his vintage HarleyDavidson or discussing Auburn football with his nephews. This degree of comprehension was quite an accomplishment given her exhausted state. When asked about her thoughts on the possibility of dialysis, Mrs. London told us that her mother suffered through dialysis the final three years of her life, and both she and her brother refused to live ‘‘with those machines’’ disrupting their lives. The attending ethicist let the nurse practitioner know that Mrs. London well understood her brother’s declining health. In the late afternoon, the CV-ICU attending invited us to a meeting between Mr. Rivers’ health care team and his extended family. All the services consulted as part of Mr. Rivers’ CV-ICU care agreed that this meeting would be the appropriate time to discuss ‘‘withdrawing care’’ with Mrs. London and Mr. Rivers’ loved ones. The various services calmly reported that Mr. Rivers’ chances of regaining consciousness and leaving the hospital were infinitesimal; therefore, the best course of action would be withdrawing care. I remember looking to my right and seeing Mrs. London addled and concerned. She immediately asked the clinicians how they envisioned her brother’s future care. The palliative care attending told Mrs. London that the team was suggesting that a DNR order ought to be placed, renal dialysis ought not begin, his VAD should be slowly weaned, and his sedation could be increased if needed. After a bit more discussion, the family agreed that these therapies would be best. Around 6:00 p.m., after Mr. Rivers’ BiVAD had been shut off, Mr. Rivers’ surgeon declared death. Mrs. London and a few other members of his immediate family were nearby. After discussing what I considered a few essential ethical and methodological aspects of Mr. Rivers’ story, I met with a senior faculty member to discuss my presentation. She suggested that I avoid saying ‘‘withdrawal of care,’’ as this phrase did not accurately describe what happened to Mr. Rivers—I realized that I agreed: while attempting to display a comfortable grasp of the technical jargon I heard in the clinic, I had adopted this phrase without noticing its inferred meanings. This ethicist also pointed out that Mrs. London’s question shows that she was not sure what ‘‘withdrawal of care’’ entailed, despite her familiarity with the specific therapies. A year hence, I have stopped using the phrase withdrawal of care and the increasingly popular but still problematic phrase withdrawal of life sustaining/supporting therapy. I suggest hospital workers and scholars cease saying ‘‘withdrawal of care’’ in both medical literature and clinical contexts; also, the neologism withdrawal of life sustaining therapy may have a place in technical texts but not in the clinic. When a patient stops receiving certain forms of mechanical or chemical therapies, this does not mean that care has ceased. Robert L. Fine has made this point, saying, ‘‘Sometimes we withdraw treatment but we never withdraw care.’’ In Mr. Rivers’ case, the family and his care providers decided to forego renal dialysis and slowly turn down the BiVAD, but ‘‘withdrawing care’’ did not occur. Indeed, I have never seen a nurse, physician, or social worker stop providing care after a certain machine had been shut off or a sedative had been increased. Mrs. London’s CV-ICU experience shows that even well-meaning and competent nurses and doctors fall back on the phrase withdrawal of care in clinical settings without reflecting on the implications of their words. Proper end-of-life care involves continual care and support, and the phrase withdrawal of care fails to capture this process. While clinicians continue saying ‘‘withdrawal of care’’ without reflection in the hospital, fortunately its use seems to

A risky recommendation.

This case presents a number of challenges and questions for the clinical ethicist, the most salient of which is: “Should Mr. N receive blood products intra-operatively?” In this commentary, we describe a potentially controversial position: The surgeon could perform blood transfusions in order to increase the probability of Mr. N’s survival. In providing this recommendation, we take the approach that the clinical ethicist already agreed to analyze the case and provide a recommendation, so the clinical ethicist should provide one. As part of our reflection, however, we suggest that the clinical ethicist should have never agreed to take this consultation for a variety of reasons that we describe below, most notably the time constraints and barriers to conducting a robust informationgathering process. We argue that a recusal could have preserved the professional integrity of the ethicist, even if there would be political consequences in doing so.