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Tuesday, February 12, 2008

A Heartfelt Appeal for a Graceful Exit

After reading the Personal Health column on Nov. 27 on preventing geriatric suicide, Gloria C. Phares, a 93-year-old retired teacher in Missouri, wrote:

“I was healthy until 90, and then Boom! Atrial fibrillation; deaf, can’t enjoy music or hear a voice unless 10 inches from my ear; fell, fractured my thigh and am now a cripple; had a slight stroke the day after my beloved husband died after 61 years of marriage.

“I’ve lived a happy life, but from here on out it’s all downhill. Is there any point in my living any longer? I’m not living — just existing. I very much want to die, but our society doesn’t let me. Oh for a pill to ease myself out and end my pain, pain, pain.”

As this column said in November, untreated depression is a common cause of suicide in older people, though by no means the only one. But when I spoke to Mrs. Phares’s son Michael, with her permission, he assured me that she was not depressed, just tired of living what she views as a pointless and painful existence. He suggested to her, not entirely in jest, that she move to Oregon or the Netherlands, where physician-assisted suicide is legal.

Modern medicine can keep people alive into their 9th and 10th decades, when in years past they would have succumbed to any number of conditions. Now a small but growing number of these people are asking why. What is the point of living so long if you can no longer enjoy living? What is the point of living until your mind turns to marshmallow and you are reduced to an existence that is less than human?

Assisted suicide raises troubling ethical questions, which is why the laws in Oregon and the Netherlands are filled with safeguards to prevent its indiscriminate use. But Mrs. Phares’s question is troubling, too, and it cannot be lightly dismissed.

When ‘Every Day Is Bad’

My high school biology teacher was 94 when I visited him at an assisted-living center. Though physically independent and medically well, he was not happy. Gesturing toward a dining room of people in various stages of physical and mental debility, he said: “I feel like my mind is going, and I don’t want to end up like them. While I still can, I want to be able to check myself out. Will you help me?”

I said I empathized with his request. But because I was in no position to honor it, I suggested that he speak with his children, who should agree with any exit strategy he contemplated and, perhaps, be able to expedite it. Why shouldn’t an emotionally sound, thoughtful person be able to call it quits when life has dragged on too long? When there is nothing to gain and much to lose from an ongoing existence?

I thought about my mother, who died at 49, a year after learning she had advanced ovarian cancer. When it was clear that no therapy could save her, when her life had been reduced to pointless treatments and prolonged hospital stays, she twice tried to end it, first by slitting her wrists and later by drinking rubbing alcohol.

Twice, to my 16-year-old thinking, her life was saved. But when I grew up, I asked myself, saved for what? More misery, an increasingly bleak future with no hope for recovery? If I were in a similar position, would I want to be rescued?

I can now understand the thinking of Betty Rollin’s mother, Ida, who, at 75, also had advanced ovarian cancer. As Ms. Rollin told it in “Last Wish” (Linden, 1985), Ida was a loving, funny, delightful human being. She was also a no-nonsense, take-charge person. So when Ida’s life had become a series of debilitating medical crises — “Every day is bad,” she said — she asked her daughter to help her end it.

“Mother,” Ms. Rollin responded, “is that really what you want — to die?”

“Of course I want to die,” Ida said. “Next to the happiness of my children, I want to die more than anything in the world.”

And so Ms. Rollin embarked on a quest to find out how her mother’s wish might be granted. It took courage and perseverance. But most of all, it took love, enormous love and respect for a woman who knew what she wanted “more than anything in the world.” With the right prescription finally amassed, Ida died peacefully by her own hand.

When very sick patients receive symptom-relieving medical, social and emotional support now provided by palliative and hospice care, few persist in wanting to die before nature takes its course. But even if such care had been available for Ida and my mother, it would not have restored either woman to a life she considered worth living.

Finding Dignity and Peace

Studies of dying patients who seek a hastened death have shown that their reasons often go beyond physical ones like intractable pain or emotional ones like feeling hopeless. Often the reasons are existential — recognition that their lives have lost all meaning, concern that they have become an undue burden to their loved ones, desire to avoid a protracted death or distress about the time and money being “wasted” in prolonging their lives, which are destined to end soon, anyway.

Dr. Timothy E. Quill of the University of Rochester School of Medicine says he believes that there is an occasional need for an assisted death. As he wrote in May 2004 in The New England Journal of Medicine:

“I recently helped my father to die. He was an engineer, independent, always on the go and in charge. He began to deteriorate rapidly from an ill-defined dementing illness, and his confusion and intermittent agitation did not respond to the standard treatments that were tried. He had made his wishes clear about avoiding any prolongation of his dying, but now he had lost the capacity to make decisions for himself.

“He was unable to sleep or relax at night, despite trials of neuroleptics, antidepressants, and antianxiety agents. How were we to honor his wishes and values and help him to find dignity and peace in the last phase of his life?

“We elected to try low-dose Phenobarbital. He awakened periodically to exchange a few words, but he almost completely stopped eating and drinking. He died peacefully five days later.”

Dr. Quill wrote that knowing last-resort options are available “is very important to those who fear being trapped in a life filled with suffering without the prospect of a timely escape.”

“Those who know that escape is possible,” he continued, “often feel free to expend their energy on other more important matters, and most will not need that escape if they receive adequate palliative care. A few, however, like my father, will end up in conditions of unacceptable suffering.”

I for one have made my wishes clear to my family. When the tortures of a continued existence with no hope of recovery outweigh the benefits of maintaining that existence, I want out. And I hope that those who love me will find a way to make that happen.

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