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Grace Notes is a series of essays by Sound Medicine contributor Dr. Larry Cripe, an oncologist specializing in palliative care at Indiana University Hospital in Indianapolis. Dr. Cripe reflects on how we might make the experience of dying more livable and meaningful, before, during and after a person passes.

"Whatever It Is You Do, You Do Well"

holding hands to say goodbye to a dying father
"Goodbye" by Chris Kreussling via Flickr/ https://creativecommons.org/licenses/by-nc-nd/2.0/
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http://media.soundmedicine.org/segments/051814_8.mp3

In this Grace Notes essay, Larry Cripe, M.D., reflects upon the death of a patient whose dying words inspired him to rethink how he can help meet the needs of dying patients.

He died seven weeks after he mentioned that his ankles were swollen. His wife suspected heart failure. The cardiologist who examined him a few weeks later, however, noted that his abdomen was round and taut like an over-inflated balloon. A CAT scan demonstrated a massive tumor in his liver. A needle was inserted and liters of fluid were drained from his abdomen. He felt better. A few days later he was told the diagnosis was cancer. When I met him the next day he was miserable; his abdomen was distended again. The swelling now extended to his thighs and scrotum. He had lost all interest in food. 

The day before he died he was sleepy from liver and kidney failure and pain medications. Our conversation was punctuated by long pauses. He was trying to sort out one last time why he had not received the chemotherapy he had expected to receive when he was referred to me. What had I done instead? His last comment, said in a slightly drunken cadence, was "Well whatever it is you do, you do well." But he was wrong, I didn't do it well. I barely knew what I was doing.

A lot has changed since 1992, the year he died. Surgeons are more adept at resecting large liver tumors. Radiation oncologists have better techniques. And there are newer chemotherapy drugs for the medical oncologist to prescribe. Almost certainly he would have seen more specialists, undergone more testing, made more decisions, and experienced greater uncertainty if he had been diagnosed in 2013. He may have lived longer. He almost certainly would have died differently.

I do not say he would have died better. Patients' expectations have changed as well. He may have chosen to pursue more aggressive treatments, experienced complications, and died in the intensive care unit after days, weeks, or months of what would turn out to be futile attempts to treat the cancer or prolong his life.

I have changed as well. My experience with death, to that point, was typically one step removed. Death happened once the things I was trained to do--administer chemotherapy, provide aggressive supportive care--were no longer feasible. I was often absent. My absence was not due to a sense of defeat or failure. Rather I suspect I stepped back--as the physicians who trained me often did--because I didn't know what else to do let alone how to do it well. But his dying challenged me. If I stepped back he'd be alone. 

It was obvious to me that he would die. And yet we never discussed how he would die, his goals, or his fears. His death was, in a sense, on my terms and not his. I like to think his death was as comfortable as possible and he and his family felt well cared for in his final days. But I don't know. I often think about my uncertainty. As we've developed more treatments for cancer it seems less necessary to think about how we care for people who die. But if we do not pay deliberate attention to how we die, we risk people being alone with unmet needs. We risk being too far away to help.