When I was training for hospital chaplaincy some 20 years ago, I was very clear about my own motivation: I wanted to learn how to die. And who better to go to as teachers than seriously ill and dying people?
I’m not saying I learned; I’m saying that I wanted to learn how to die. And I did learn something which turned out to be almost as useful. I learned what I was afraid of.
I was, I am, afraid of pain. Of loneliness. Of humiliation and indignity. Of powerlessness. Of dying alone.
The hospice movement was then at its beginnings in America. It quickly became clear to me that, for the best possible death (whatever that might be), hospitals were useless. It was hospice which offered hope to relieve my fears: to medicate pain adequately, to have my own wishes respected and thereby retain a measure of autonomy and dignity, and to be accompanied to the border of the strange land awaiting me.
Hospice still seems the best hope to me today, and conventional terminal health care looms more than ever as the enemy. Which is not to say that hospital care of the dying could not be vastly improved because it could, at minimal added dollar expense. Oh, but the cost of changing attitudes is incalculable! Well, perhaps Pauline Chen’s book is a step in a necessary process that will some day win out. Meanwhile, here is a quote from the end notes of Final Exam, well worth considering:
“Hospice has an important, albeit unfulfilled, role in easing the dying process; some experts in end-of-life care have likened dying without hospice to having surgery without anesthesia.”
Despite the hysterics who shrill about “death squads” (out of profound and unacknowledged, often unwitting, ignorance), hospice is simply advanced palliative care. Comfort care. How prophetic is Pauline Chen? A New York Times article of August 18th begins:
“In a study that sheds new light on the effects of end-of-life care, doctors have found that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared — but they also lived nearly three months longer.”
There’s a wake-up call to all of us!