In Brief—What is the meaning of “quality of life?” Is it determined by the focus of the medical profession’s attempt to keep an elderly person alive as long as there is hope or is it up to the individual, regardless of age, to determine when his/her life is no longer worth living? Those uncomfortable questions are explored here. Be sure to read the Addendum for still another element in the end of life question.
A Question of Life or Death—
A pulsating pale green signal crawls across the monitor telling the white-clad staff of the heartbeat of the patient in the bed below. The patient is a shrunken grey shell of what used to be a vibrant woman. Unaware, she sprouts tubes and catheters like an obscene mechanical octopus. Did she ever think her life would be like this? Failing heart, fluid-filled lungs, punctured, probed, waiting out her remaining time in the company of her professional attendants.
Half a world away, my computer tells me that my father’s widow is the subject of a desperate attempt to give her a few more days of life. Does she want those few days or is she ready to drift into whatever realm she believes awaits her? What is the quality of the life she has been living these last few months and years? Indeed, what is the quality of the life she has lived for many years, even the narrow ones she lived while Dad waited in the outer office, an old magazine is his lap?
Dad drank hard and lived hard, but he could hold his liquor when his companions were unconscious on the floor. He loved the mountains and lakes of Colorado nearly as much as he loved women. And they loved him, even my mother who cared deeply before the alcohol and other women intruded. Although he and Mother divorced, she once admitted that Dad never had a mean bone in his body. He and I had our problems when I was young, but we overcame them when I grew up and realized he and I were not so different. The reward in that realization was that we became close in the last years of his life.
Dad married the woman now in the hospital shortly after he and I reconciled. It was said that she straightened him out, but I’ve always wondered. Admittedly, he no longer drank or dallied with the women, but the spark dimmed. Despite that, his warmth and consideration survived intact. His wife was wedded to her work and, after a while, the trips to his beloved Colorado grew more infrequent before stopping altogether. The waiting room with its stale magazines became Dad’s cage. I have often blamed his wife, but he could have rebelled. He didn’t. The spark guttered out. His quality of life was diminished.
The week before a much-anticipated visit to see Dad and his wife, I had to cancel because of my daughter’s illness. I called to tell Dad that although this visit was off, we would come as soon as my daughter was well. At the end of the call, that gruff, warm old man blurted out, “I love you and I always will.” I reciprocated. He died suddenly a week later. The visit was too late. The quality of my life dimmed, but when the grief faded away, I told myself that I was fine. The grief was a temporary thing, but the good memories lived on. Years later, after my brain operation, I discovered the true meaning of quality of life.
What of his widow? She grieved, of course, but her solace was to invest even more of herself in her work. So it continued until her employer of many years gently told her it was time to go. The woman withdrew into herself. Her apartment decayed for lack of attention. When it became obvious that she was in decline, her niece moved her to a place nearby. Months passed. Then came the message that she was in the hospital.
And what does this story have to do with quality of life? While her quality of life was in decline, and Dad’s preceded hers, what does this have to do with me? Months ago, I wrote of my belief in death with dignity. The woman in the hospital, and many like her, are nearing their ends from natural causes, punctured and probed, attended by professionals who, despite their mission of preserving life, nevertheless violate the dying person’s personal integrity and dignity. Disease, illness and old age are not the only insults humans face. What of the quality of a person’s life? What might the individual want?
Whose Decision Is It?—
Theoretical physicist Stephen Hawking is confined to a wheelchair and without a voice, but his intellect remains intact and his contribution to our understanding of the universe is better for his being here. At the same time, comedian Robin Williams has chosen death rather than face the indignity of a life with Parkinson’s disease. Which one is right? It’s a quality of life issue. The actor Michael J. Fox has Parkinson’s, but he carries on despite having expressed sympathy for Williams’ choice. Which of them was right?
My point is that a natural death is not the only path an individual must follow. The quality of one’s life must be weighed as well. For each individual, it’s a personal decision. If we believe that each person is entitled to live life according to her/his values, as long as nobody else is physically hurt, how can we say that Williams was wrong for choosing to end his life while he still had his dignity and his intellect?
Is it selfish for Robin Williams but not selfish for a person’s loved ones to want their loved one to end life “naturally” being subject to the undignified ministrations of well-meaning medical personnel? Shouldn’t the quality of a person’s life and wishes be taken into consideration? Who is most concerned with that question? The individual whose life is diminished or that person’s loved ones? Who is the selfish one here?
I maintain that it’s up to the individual to make that decision. What’s your view?
There is an article in the September 26 New York Times with a horror story that goes well beyond the issues I have raised here. Here, the villain is the state, not the loved ones who, indeed, struggle to respond to the wishes of a loved one. I urge you to read it. Please.