So imagine my surprise when I opened the New York Times, turned to an article about end of life decisions and instantly burst into racking, inconsolable tears over someone else's father. In "What Broke My Father's Heart" Katy Butler details the role played by fee for service medicine in ripping every shred of dignity and peace from her parents' final years. An ill-informed decision to put in a heart pacemaker (because a doctor refused to do emergency surgery on a painful condition without it) extended her father's life far beyond what he had intended: as he descended into stroke induced senility, blindness, and disability, his wife valiantly tried to care for him and the device beat relentlessly on no matter what. Worse, the doctor refused to disable the pacemaker, even though the patient's health proxy dictated that he be refused treatment at this stage.
Doctors pushing life-prolonging (and fully reimbursed) procedures on patients who have explicitly said they do not want their lives prolonged is one important theme; elderly partners and children whose life and health are shattered by the work necessary to care for a person who wanted to be dead, and would be dead were they not being artificially sustained, is another. The failure of the medical profession to deal with this ethical problem is the most serious issue raised, because it is impossible to plan well enough to make one's own end of life decisions in all circumstances.
People who know me well might assume that I am vividly recalling my own father's death from cancer, his frustration at not being able to die when he wanted to, and my mother's long struggle to run their household and sustain him. True, perhaps, and I see a great deal of my mother in the story, particularly her own unwillingness to relinquish him to the care of strangers despite the cost to her health. My father wanted to die months before he did, but had left it too late to take care of this difficult task himself. I was too cowardly to help him when he needed it: my parents lived in a state where the anti-abortion folks and the Catholic Church are as fierce as they come and I am ashamed to say that I was afraid to go to jail for something I believe in profoundly. Go here and scroll to p. 1017 for my father's views about how physicians could help patients choose the limits of treatment as patients and their families grappled with fatal disease.
But I also knew Katy's parents -- they were people of unsurpassed dignity, and they seemed to love each other very much. Jeff Butler was a distinguished History Department colleague and Val, his wife, was an artist, a teacher, and one of the most beautiful, gracious people I have known. They were cultured, kind and had a carefully chosen life. I suspect, although I do not know, that one of those choices was to separate from their homeland, South Africa, during the worst of apartheid. The history of the apartheid state was what Jeff wrote about, after all, and such people were frowned upon under Afrikaaner rule unless they had the right views. I arrived at Zenith the year after Jeff retired, usually only encountered him at the mailboxes, and would never say we were close. But he was the epitome of the cultured, high-achieving academic that liberal arts colleges prided themselves on in the late twentieth century. He had a sparkly smile, the look of a former athlete, and whistled ever so slightly when he talked. He had a broad South African accent that you might mistake for British, but once you have been to South Africa you never would. Jeff was always ready to offer congratulations on a recent achievement, and encouragement for the next one. As an older woman, Val was still stunningly beautiful, and always put together, with lovely white hair that was tied back in a knot. In contrast was Jeff's look of being slightly mussed and askew, a presentation that was accentuated by an empty sleeve pinned up to his shoulder or chest due to an arm lost in World War II.
Katy's story is very graphic, spare and sets out the problem of end of life decisions - and why it matters to grapple with them in a comprehensive way that forces doctors to the table -- in a precise way. Read it.