Dr. Stillman is associate program director, Department of Internal Medicine, University of Louisville School of Medicine, Louisville, Kentucky; e-mail: firstname.lastname@example.org.
Bill, one of my active 78-year-old patients, underwent minimally invasive coronary artery bypass grafting in 2008. His first two postoperative weeks were complicated by shock, sternotomy with additional bypasses, a multilobar pneumonia, renal failure requiring hemodialysis, fungal empyema, clostridium difficile diarrhea, and chest compartment syndrome precipitating a mediastinal “washout.” Amidst this catastrophic cascade, I called a family meeting, told Bill’s wife and children that even if he were (against great odds) to live, he would be a shadow of his former self, then asked them to make him “comfort measures only.” The surgical team disagreed with my assessment and the family’s opinion was split, so we continued aggressive care.
Bill survived, although he spent two months in the surgical intensive care unit, three additional months in a subacute rehabilitation facility, and was admitted twice more to the hospital. He currently lives with his wife, continues to spend time with his family, and winters in Florida. He struggles with depression and chronic chest wall pain, has gone blind from causes unrelated to his surgery, and has ongoing nonischemic dyspnea on exertion. He can walk perhaps one block and is understandably less engaged with his family business and his community than he had been prior to his surgery.
In 2012, Bill, his wife Elizabeth, and their daughter Margaret participated in our section’s morbidity and mortality grand rounds. I presented his history to the audience, and Bill, his family, and I sat as panelists while a moderator led us in a debriefing during which we reflected together on this episode, how it molded our physician–patient relationship, and what each of us learned from having come through it. Bill and his family were generous, the audience was engaged, and the experience was profoundly educational.
When asked if he had suffered in the hospital, Bill replied that he remembers almost nothing of his initial postoperative weeks. While many in the audience were surprised, Bill’s answer mirrors the literature suggesting that patients frequently have little or no recall of stays in the intensive care unit.
The audience asked Elizabeth and Margaret whether they had ever discussed end-of-life care with Bill. When they admitted they had not (a shortcoming of primary care), they described what it had felt like making such consequential decisions without a clear vision of what he would have wanted. Margaret spoke powerfully of having to “choose from a buffet of medical options about which she knew very little,” and to the difficulty of being torn between diverging medical opinions. She was unsurprised when a member of the audience cited that surrogate decision makers incorrectly represent patients’ wishes in up to one-third of cases and that no more than 10% of Americans hold advance directives.
Finally, the moderator initiated a conversation between Bill and me, asking me how I had felt when Bill survived, and asking Bill what advice he would give physicians. Fortunately, he and I had had this conversation before, so our exchange was comfortable. I described my relief that Bill had lived, my shame at having offered his family an incorrect prediction that could have led to the withdrawal of care, and my frustration over Bill’s vastly diminished quality of life. Bill asked that physicians be more aware of the potential risks of the treatments and procedures we offer our patients and that we have realistic discussions with them about expected courses of recovery.
These rounds were a staggering reminder of the trickiness of predicting outcomes during catastrophic illness, the difficulties of surrogate decision making, the problem of disconcerted care, and the value of debriefing with our patients after trying episodes.
Author’s Note: The names in this essay have been changed to protect the identity of the patient and his family.