WHEN I got the news that my 92-year-old mother had had a pacemaker installed to treat an abnormal heart rhythm, I was aghast. She had not wanted to go on living, but the Alzheimer鈥檚 disease that had trapped her in an undignified, meaningless existence for several years prevented her from protesting.
Her living will, written well before the onset of her senility, stated explicitly that if there was no expectation that she would return to a dignified state, she did not wish invasive medical procedures. But her doctor had not paid attention. My brothers and I had not been told what was going on and therefore could not step in to help her. The doctor, without consent 鈥� my mother could not give it in her state of senility 鈥� had gone ahead unilaterally, consulting no one.
This was 20 years ago, but still appalling even by the paternalistic standards of that time. His action denied my mother a relatively quick cardiac death, which, with morphine, would not have been unpleasant and would have released her from her indignity. What the doctor had done was medical assault, and my brothers and I were furious. We fired him, but the damage had been done. She lived on for another five years, robbed of her dignity and autonomy.
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I remember as a child my mother considering several of her older friends who had become senile and saying, 鈥淛ust take me out and shoot me! I don鈥檛 ever want that to happen to me.鈥� Mother was one of the earliest to sign a living will, back in the days when they were first coming into use. A confident woman who had once shaken President Kennedy鈥檚 hand at the White House, she knew her own mind and was used to making executive decisions.
When she became senile in her early 90s and had to be cared for in a nursing home, my brothers and I, wishing to honour her dictates, had made it crystal clear that nothing was to be done to prolong her life in the event of a sudden collapse. To us, she had already died. As a doctor myself, I made sure that all the staff knew her and our wishes.
My brothers and I thought we had covered all the bases, but we did not get the doctor to say that he agreed with our plan of providing no more than comfort care. He listened to us, but we realised in retrospect that we had not pinned him down with a pledge to honour Mother鈥檚 wishes. A bad mistake.
That unsettling episode in 1987, which I have never got over, was a turning point in my career as a doctor. I had all along been interested in the rights of the dying, but this made me a far more resolute advocate for patients who experience problems at the end of life. Too many people undergo frustration of their wishes as they approach a dying they cannot control.
I have just put together in book form the things I have seen in my practice that work and do not work in the care of the dying patient. Rights of the dying have clearly improved in the past several decades, but one continuing problem is that the doctor may still not really listen to what the patient wants. The old paternalistic approach 鈥� that the doctor knows best 鈥� can rear its head and replace what should be decision-making that is shared among the patient, family and doctor.
In my dealing with patients鈥� end-of-life problems, I continue to hear Mother saying to me, 鈥淒on鈥檛 ever do that to me!鈥� It is a repeated reminder to walk always in the patient鈥檚 shoes and to listen to what she and others like her have to say.
