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A Piece of My Mind
May 11, 2011

Miles Together

JAMA. 2011;305(18):1840-1841. doi:10.1001/jama.2011.591

He was 47. His death did not end physical agony, nor was it a welcome relief to relentless emotional suffering. His death came far sooner than he or his family wanted. His death came with profound regret about unalterable choices and events of the past. And his death came with the soul-wrenching heartache that accompanies loss of this magnitude. In the end, though, it was a good death.

Our journey together ended on a bitterly cold, wind-whipped December night, nearly 12 years and 138 office visits after it began. I spent the 40-minute drive to the visitation in silent reflection. Fresh memories surfaced of my last conversation with him from a few days before, when I sat with him in his modest home, assuring him that I was not abandoning him even though he was receiving in-home hospice care. He needed me to be there, just as he had needed me in all of those monthly visits, many of which were hardly medically necessary. I needed to be there too. I needed the intimacy that came from being with him, in his own home, on his turf. I needed both of us to see the naked truth of the situation, uncluttered and uninhibited by the sterility of the clinic. As Christmas music played softly in the background, we both knew that this chapter was soon coming to an end. He wept softly. He was scared. He wanted more time. He was adamant about staying at home even though there was a bed available at our inpatient hospice. Home was, after all, where he was most comfortable. I had learned over the years that he craved predictability, and there was nothing predictable about this situation, except the inexorable finality of end-stage liver failure. We talked about how he could depend on me to continue caring for his two girls, both of whom were my patients as well. And finally, we talked about it being OK for him to let go, that the family he was going to leave behind would be loved and love him in memory. Two days later he was gone, slipping quietly from hepatic coma into death. He died in his own home, his oldest daughter holding one hand while his wife held the other. His was indeed a good death. It was far too early and certainly not exactly on his own terms, but he died in peace and in his own familiar and comfortable surroundings.

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