There was an exceptionally well-written piece published in the Washington Post this weekend. I presume a hospitalist wrote it, which magnifies its significance. In it, he describes the difficulties in caring for terminally ill patients.
As I read it, it reminded me of a story my dad told me several years ago. His friend, I will call him Steve, was experiencing a great deal of stress because of his dad’s ailing health. You see, his father had end stage dementia.
Steve relayed that his dad specifically communicated to him years earlier that he never wanted to experience the kind of death his father, Steve’s grandfather, underwent. This, the heart wrenching and protracted death we all know on the wards: stepwise cognitive decline, erosion of ADL’s, and ultimately custodial dependence. The patient is a shell of their former selves unable to interact or recognize family.
The irony and sadness was, Steve watched this same misfortune play out with his own dad. Why you ask? Because it happened so gradually, and so subtly, that there was no epiphanic moment to act on and deter.
I can only speak for men, but the idealized demise at 85—a round of golf, a fine meal, making love to the woman you love—and a painless death as you drift deeply to sleep—is a fool’s game. Other than the errant politician, we have more fingers on one hand than accounts of that sort of celestial departure. Steve’s experience is more commonplace, and it occurs that way just because. It is life.
Overlay that anecdote with an encounter I had earlier this month. I was with my resident team, on the wards, discussing another physician’s terminally ill patient. As I began to deliberate on overtreatment and the ethics of end of life care, a radiation oncologist with whom I have a superficial, but cordial relationship joined in the discussion. As he engaged, sentences such as “families need to know,” and “society must come to grips with our healthcare problem,” riddled his commentary. It was the familiar, “America must have an adult conversation” oration. The irony was, and this makes it so tragic, his patient was our focus. His close proximity to the patient’s course, and long-term relationship with our subject blinded him. The irony was overpowering, and it gave us all pause. Silence was the best tutorial of all.
Most of us, even the most experienced, believe we can navigate and identify points A to D. We cannot. The practice of medicine is A to B to C to D. There is no instruction manual to render the spaces.
Next time you illustrate the dysfunctions of our system in a pedagogic role, ponder the above scenario. Why? It might be you the team across the hall is discussing.
That is why resolving this problem is so damn hard.