The recent anguished act of Edward Baker in storming into a San Pablo, Calif., hospital and forcing a nurse at gunpoint to disconnect the life-support system of his cancer-stricken father touched many of us who have lived with that same dilemma. Let's hope it touched the medical profession, too.
It brought back in sharp detail my father's death 15 years ago. He was 86 then and suffering from a whole series of maladies connected with his age. He was in Florida and I was in Orange County, which meant we had few opportunities for face-to-face talk. He'd had surgery twice, and when my brother and I visited him at the hospital after that second dreadfully painful episode, he said in the direct way in which he spoke, "I want your promise that you will never again allow them to do surgery on me." He meant it, and he got it.
My father was as ready as a human being can be to die. He had made his peace with this life, and for his last few years lived more in the next world than this one. I never got a very clear picture of his vision of that next world, but I know he believed in it and that he would see my mother and a lot of other people who had been dear to him when he got there. This was warm and comforting to him--and to my brother and me.
After his second surgery, my father lived in a convalescent home where he could get the constant care he needed. My brother and sister-in-law, who lived nearby, visited him regularly, and I came--when I could--from my home in Corona del Mar. It was a coldly efficient, no-nonsense type of institution that distressed and depressed me each time I saw it because I knew there was no alternative to it. My father lay there, with whatever dignity he could summon, leaving his body to be bathed and fed while he drifted between probes of the next world and childhood memories he recounted with startling clarity.
Then he became ill again. The young doctor who made the rounds of this convalescent home called my brother and told him that he thought our father had leukemia. He wanted to do exploratory surgery to find out. When my brother said "No," the doctor became angry and a little abusive, accusing my brother of not looking out for the best interests of my father.
My brother phoned me that night, distraught. I told him to hang tight, then I called the doctor. He was short and a little impatient with me, and I tried to be concise with my questions. As I recall, he repeated brusquely that the purpose of the surgery was to determine if my father had leukemia.
And if he did? "Then we'll treat it." What are the chances of treating it successfully in an 86-year-old man who wants to die? "I can't answer that." And if the surgery indicates he doesn't have leukemia? "Then we'll try to find out what he does have." And if leukemia turned up and was treated successfully, would there be any appreciable difference in my father's condition? "Probably not, but at least we'd know that we did everything we could."
I explained to him as evenly as I could the promise my father had extracted from us. He said he had heard that from my brother, too, but that people in my father's condition were incompetent to make such life-and-death decisions and his living loved ones have the responsibility to make sure that everything possible is done to preserve that life. When I asked him if he thought the quality of life should enter into such decisions, he brushed the question aside as irrelevant. Then I told him that I fully supported my brother's position and did not want the surgery done on my father.
He hung up abruptly. The surgery was not done. But the young doctor told my brother that under the circumstances he would no longer be able to care for my father in the convalescent home, and so we had to make other arrangements that were both difficult and expensive. My father died about three months later, peacefully, with at least a portion of his dignity intact. And from that other world he now inhabits, I'm sure he's saying to my brother and me, "Thank you for sticking to your guns."
I have no hostility toward the doctor involved. Physicians have their job to do--to minister to the sick to the best of their ability and knowledge. But we have our job, too, to allow--yes, to fight, if necessary--for the rights of our loved ones to die, if that is their wish, in dignity and peace. We recognize the doctor's obligation, but all too frequently, they don't recognize ours. As a result, hundreds of thousands of vegetables are being maintained on life-support systems--and desperate acts like that of Edward Baker are the almost inevitable result.
I have no easy answers to this. In a litigious society in which physicians spend more on malpractice insurance than most of us earn, maybe there is no answer. But we seem to be directing a lot of attention to the legal rights of the unborn these days. What about the legal rights of the dying to pass on with dignity?
My father was a gentle man and probably would not have approved of Edward Baker's violent answer to that question. But he would have understood. So do I.