When Pain Is a Killer

By Athan Bezaitis on September 28, 2009 11:14 AM

Ten years ago, author John West’s father, a well-known psychiatrist, asked him to perform an act of compassion so significant that it would change his life.

Disabled and suffering from terrible pain caused by terminal cancer, the 74-year-old physician wanted his son to help him die.

Despite the legal risk and emotional turmoil, West honored his father’s request by administering a fatal dose of prescribed painkillers. Less than a year later, his mother, also a respected medical professional, who at 75 was struggling with the effects of mid-stage Alzheimer’s disease, emphysema and osteoporosis, asked West to perform the same act. He once again honored his parent’s request.

“I respected my father and mother and I loved them, so when they made their wishes clear to me, I wasn’t about to argue,” West said to students, faculty and community members at the USC Davis School Auditorium on Sept. 17.

His story, chronicled in his memoir The Last Goodnights: Assisting My Parents With Their Suicides, was part of a special lecture on end-of-life issues hosted by professor Susan Enguidanos as part of her End-of-Life Care class.

A former civil rights and employment law attorney, West was aware of the consequences of his actions.

In preparation, he took pains not to leave evidence or slip up by talking about what he was planning to do in front of family and friends who might implicate him or attempt to put a stop to his plans. During the USC event, he candidly discussed the anxieties he faced, such as whether he could get enough pills for his father, and whether his mother would be able to continue swallowing them once she started to fail.

“I believe, as my parents did, in freedom of choice, the right to personal privacy and self-determination … the right to refuse medical treatment and the right to choose death with dignity,” he said. “Modern medicine is keeping us living longer, but it’s also keeping us dying longer.”

Oregon, Washington, the Netherlands and Belgium are the only jurisdictions in the world where laws specifically permit physician-assisted suicide. This is defined as the ending of life through the voluntary self-administration of lethal medications. It is important to distinguish physician-assisted suicide from euthanasia, which is not legal in the United States. Euthanasia occurs when the doctor administers the fatal dose.

In Oregon and Washington, the law is limited to terminally ill patients with a prognosis of death within a year or less. This designation may exclude people with ALS, Parkinson’s disease and Alzheimer’s disease who may want to end their suffering but do not legally qualify.

West wrote the book with the hope that the laws would change in states such as California, which he said narrowly failed to pass a law similar to that of Oregon. When asked whether the deed was a “selfish one” on the part of his parents, West maintained that he “did the right thing for them.”

Enguidanos, the Hanson Family Trust Assistant Professor of Gerontology and assistant professor of social work, would like to see change beyond physician-assisted suicide laws. She advocates for a tiered health care system that would make available both curative and palliative treatments earlier in the disease process for people with terminal and nonterminal conditions.

As the system currently works, she explained, a patient must have a physician certify that he or she has less than six months to live before receiving palliative care in the form of hospice, which includes psychological services, pain and symptom management and other supportive care in the home.

“Many of these important palliative services are missing for sick people living in the community,” Enguidanos said. “Somebody with cancer should be able to get curative treatments such as chemotherapy and radiation, while at the same time working with palliative care professionals to ease the pain, a social worker to document their end-of-life care wishes and have access to people who can help them in their homes."

Following West’s lecture, a panel discussion featured Nancy Gibbs, regional coordinator for elder care at Kaiser Permanente. Gibbs discussed advancements in pain and symptom control, which is an essential component of hospice care.

“Treatments available today may have been able to ease the burden for John West and his parents, which might have allowed for a different outcome,” she said.

Andrus Volunteer Lela Lavendar made a plea for her own right to die rather than be kept alive “like a vegetable,” and actor John O’Leary discussed his personal experiences with friends in a great deal of pain at end of life.

“If we develop highly reliable palliative and hospice care services, we can eliminate these issues through improved quality of care at end of life,” Gibbs said. “No one should suffer needlessly.”

TAGS: aging, books

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