“If time were short, where would you want to be?”
This is a question that we often are taught to ask patients as we try to put the “person” back into end of life plans. And I know in our own minds we think we know the answer. Getting people home to die in the place most familiar to them is often one of our priorities in end-of-life care.
I learned the lesson of needing to broaden my perspective from one family early in my career. It was many years ago, in those days when my answers were clearer and I knew a lot more than I do these days. My education came one weekday morning in an ED in Maine. A man with terminal prostate cancer presented to my hospital with progression of his significant pain and weakness. He came with his wife and son. They had taken care of him at home, but his symptoms had gotten more difficult to handle. The easiest course was to admit him and let his doctors sort things out. But instead, sensitive to the fact that hospitals are an uncomfortable, sterile, noisy place to be cared for, I took a deep breath and tried to arrange for hospice to meet him at home while I treated his acute symptoms. What this family really needed was some support in their caregiving, and enlisting hospice seemed the perfect answer…even if it took a lot more effort on my part from the ED.
About two hours into this project, the patient’s son took me aside. He hesitated. He looked dubious. He explained that his mother was the consummate hostess. He gently suggested that, if I sent his dad home, even with help, she would spend all of her days cleaning and baking to provide hospitality for the many guests that would want to visit her husband. He was very worried that she would have no time to just “be with” him.
It was only after listening to the son that I recognized some of the insights that Richard Leiter has made in his recent essay: Is dying at home overrated? (New York Times, Sept 3, 2019). Leiter writes about the burdens at end-of-life on informal caregivers. While patients may embrace the idea of dying in a familiar environment, they also don’t want to be a burden. These two values may conflict. In fact, it may be the obligation of us as providers to see the ambivalence, the overwhelming tasks, and the messiness that sometimes accompany dying at home. As Leiter points out, huge problems with hospitalization in our culture persist – those of us in palliative care still have lots of work to do to “titrate” the response of EMS, the ED and the inpatient teams so they focus on patient priorities, avoid incessant blood draws, alarms, and burdens of protocol-driven practices that patients usually endure. But deaths in the hospital should not always be seen as failures. Let’s remember that when we focus like a laser beam on how to help not only the patient but their circle of loved ones to have the best dying experience possible.