Honoring the Choice to Die

April 2004 -- The controversy last year over whether to withdraw a feeding tube from a 39-year-old Florida woman with severe brain damage has thrust questions regarding end-of-life decisions into the limelight once again. That debate has been intensified by divergent opinions about the woman's possibility of rehabilitation and by doubts raised about her husband's motivation in wishing not to prolong her life.

The complexities of that case, however, should not be allowed to bias public response to a somewhat different but no less urgent ethical question: What is the most humane way to treat individuals who, at the end of a long life, express a clear-minded wish to die? As a society with an increasingly aged population, we need to confront this question head on.

Regarding this issue, as my mother lay dying last fall at the age of 94, her own words from five years earlier came back to me repeatedly. "Dr. Kevorkian is a hero," she had said. At the time, we were watching a newscast on the physician's conviction for second-degree murder—his alleged crime was having administered, at the patient's request, a lethal injection to a man suffering from Lou Gehrig's disease.

Then 89, my mother was still leading an independent and satisfying life. Though her hearing was severely impaired, she could function adequately with a hearing aid and special telephone equipment, and continued to participate in activities for her favorite charity, Hadassah. She had not yet suffered the hip fracture that would soon make walking much more difficult and risky. She was still able to travel north from her home in Florida to visit family. She could also keep in touch by telephone. Still more important, she had not yet experienced the loss of her husband, a wonderful man who was her loving companion for more than 25 years. Nor had she yet suffered the death of her younger sister, who lived close by, or (most painful for a parent) that of her only son. Lastly, her eyesight was still keen enough to enable her to drive, read large-print books with ease, crochet, play cards (though never on Friday night, because it was the start of the Sabbath), watch television (she was an avid Marlins fan), and even read the newspaper.

All that had changed by the time my mother passed her 94th birthday last April. As a result, she lost the desire, and with it her once-iron will, to live. She had reached the point at which both the joy of life and the autonomy she prized were so greatly diminished that the struggle to continue seemed pointless to her.

"Life is not enjoyable for me anymore," she told me. "I'm tired, and I want to go." In this as in every other life crisis, she was admirably realistic and positive-minded. "Don't cry for me," she said. "I've lived a long, full life—more years than are granted to most people. No one lives forever. This is part of life, too, and you must accept it."

Because her vital organs were still strong, however, she died a slow death—in effect, by voluntary starvation. "Why does it take so long?" she would murmur. "Why should it take so long to die?" (My stepfather, who at 97 spent long months waiting for death in a nursing home, used to say: "It's like waiting for a bus that never comes.")

In the weeks after my mother stopped eating, we who love her had to witness her gradual wasting away, and with it her loss of continence and the fading of consciousness. She was luckier than most, the hospice nurses told us. She was not in physical pain, and she was in her own home and her own bed, well cared for. She was undergoing the normal dying process for one who is not struck down by disease or accident, they said, but it can take weeks. Hospice caregivers did all they could to ease the process. Yet it was nonetheless agonizing for us to watch. And we could see that it was psychologically agonizing for her as well.

The law that so wrongly condemned Dr. Kevorkian five years ago would surely have denied the right of a woman in my mother's condition to be helped to die. When euthanasia is deemed acceptable, the primary justification cited is relief from extraordinary physical pain and suffering in patients in the final stage of an incurable illness. Yet in surveys of patients themselves, the main reasons given for wishing to die are precisely those that my mother voiced: fear of the loss of autonomy and a greatly diminished capacity to engage in the activities that make life enjoyable.

Had my mother been given a choice between her slow death by starvation, in the desolate mental limbo she ultimately slipped into, and a painless lethal injection administered when she could still respond to loving family members gathered round to embrace her, I have little doubt which course she would have chosen, in spite of her own religious beliefs.

Nor have I, or most of the friends and relatives with whom I have discussed this question in recent weeks, any doubt as to which course we would choose. When faced with our own end, we would welcome a doctor who, like Dr. Kevorkian, might honor our wish to die and enable us to do so humanely, with dignity.

This article was originally published in the April 2004 issue of Navigator magazine, The Atlas Society precursor to The New Individualist.

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