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Every time I take care of a dying patient, I think of Fred.* (name changed). Now as a senior resident, I have cared for dozens if not hundreds of terminally ill patients. And with every one, I am reminded of my experience taking care of him
In the latter portion of medical school, I participated in what is known as a “longitudinal clerkship.” This means that, rather than rotate on a monthly basis to different specialties and sites, I remained at one major hospital for the academic year. During that time, I completed the majority of my required rotations and also followed a panel of patients through every aspect of their medical care. It was a profoundly meaningful and transformative experience for me, both as an aspiring physician and a human being. I learned more that year from my patients-about both the scientific and humanistic aspects of medicine-than I learned throughout the rest of medical school combined.
I met Fred one day in primary care clinic, when he came in for a presumed COPD exacerbation. His chief complaint was fairly unremarkable, but a quick perusal through his chart made it clear that his past medical history was anything but. He had survived more “almost uniformly fatal” diseases than any person I have ever met, and some how he maintained a positive outlook and a very sharp wit. As frail as he appeared, I caught myself subconsciously agreeing with him that he could essentially survive anything.
A couple months later when Fred came to the emergency department with profound shortness of breath, he looked even weaker and more frail. We admitted him to the hospital, and further work¬up revealed that he was now in severe decompensated heart failure. Despite several frank prognostic and goals of care discussions with him, his family, and various providers and specialists, he repeatedly asserted that he was to remain “full code” and that he wanted all life¬-sustaining
measures taken. His confidence that he would survive never wavered. I realize now that¬¬, certainly against my better medical judgment, ¬¬I always believed him.
But nonetheless, each day he was literally and figuratively wasting away a little bit more. It was becoming painful for me to watch. He developed a severe bloodstream infection and a host of other complications. One morning as he gasped for air and writhed in his bed, Fred looked me straight in the eye and said “I’m afraid I’m going to die.” And at that moment, I was afraid he was too. As I so eloquently explained to my attending afterwards, he quite simply looked like he could not live any longer.
As his condition deteriorated, I could not help but feel like I was torturing this man whom I had come to deeply admire. His nasojejunal tube was horribly uncomfortable and his malnutrition was still only worsening, ¬¬and his shortness of breath was getting progressively less manageable. We could not appropriately treat his heart failure or his infection effectively without risking aggravating his other. He became delirious and required a 24¬-hour sitter. But still, during his lucid periods, he insisted that he wanted “everything done.” And so the torture continued .
Finally, yet another family meeting was planned to discuss the realities of his medical situation. For whatever reason, that discussion was a major turning point. The most poignant moment of the afternoon for me was when he turned to his wife, and she told him that “it’s okay.” That he could “let go.” As I listened, I had the harsh realization that I needed to let go too. We would not be able to save his life. And so, after several tearful hours and heart¬-to-¬hearts between the various family members, Fred and his loved ones decided to transition to comfort care .
The very next day, Fred was a new person. He was comfortable and gregarious and happier than I had ever seen him. It was a true gift for me to see him in such a state, and I
know his family felt the same way, They had their beloved Fred
back. I was powerfully struck by how we had most helped him by
actually doing less, so to speak .
A few days later, Fred passed away. But my experience taking
care of him will undoubtedly remain with me forever. Reflecting
on his case, I have realized that his death was actually much less
upsetting for me than the time during which we were torturing
him at his own request with life sustaining measures than in
his case were not actually going to be life sustaining at all. As
I have gone on to have additional experiences in Palliative care
throughout my training, it has become clear to me that often
patients understand the severity of their disease - and their
prognosis-much more than we may think they do. Frequently,
in these situations the most valuable thing we can do is simply
help give them the time they need to come to terms with it. In
hindsight, I think Fred knew exactly what his odds were. But he
needed the time to be able to face them, and I feel privileged to
have been able to accompany him during that time .
Supporting someone through a natural death is a crucial
part of healing, which I am fortunate to now much more fully
appreciate thanks to experiences such as taking care of this
remarkable man. Ultimately, Fred and I were wrong about his
survival. But we were still able to heal him in an incredibly
important fashion after we both let go .