End-of-Life Choice, Palliative Care and Counseling

Different Worldsby Barbara

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The PBS Frontline show, “Facing Death” continues to resonate in blogs and opinion pieces across the nation. Many people told me how hard it was for them to watch it. The footage is indeed challenging, for it displays a parade of suffering and grief, with precious little compassion or joy in balance.

Yet the dialogue and the stories carry powerful lessons. So I watched it again and talked with others who had also watched it twice. I read the transcript. The stories reveal startling truths. Each truth warrants a blog of its own, and more. Here are a few of the most distressing:

1. Patients receiving aggressive therapies often die of those therapies, not of their underlying disease. We meet one patient who succumbs to the consequences of his treatment and others who barely survived, only to see their disease recur and die soon thereafter. A bone marrow transplant specialist tells us stem cell transplants kill up to 30% of recipient patients.

2. When doctors talk about a patient’s situation, they say very different things to each other than to the patient and the patient’s family. The difference is not only medical jargon versus plain speaking. The difference is scientific understanding versus wishful thinking.

3. Palliation and hospice play practically no role in the medical care of these patients. Hospice, the gold standard for symptom management and peaceful, gentle dying, appears only as a final receptacle for treatment “failures.”

4. To doctors, death is the enemy; suffering is not. Suffering is a heroic contribution to the advance of science, or the worthy price of living one more day in a hospital.

The concept of a “good death” does not exist in this world – the wards of Mount Sinai shown in this film. The sad truth is these patients probably relinquished any possibility of a “good death” when they signed up for the aggressive treatments we see them endure. Indeed, most of the physicians seem untrained in the elements of a good death and they discount its value as the graceful acknowledgment of mortality and compassionate legacy to bestow on family.

But there is another world. By coincidence, just a few days earlier the Dartmouth Atlas Study mapped the locations in the United States where these two worlds simultaneously exist. The first world, where patients dying of cancer endure repeated hospital admissions and long internment in the intensive therapy units of academic institutions, is in Manhattan and Los Angeles. Forty-seven percent of patients in those locales die that way. The epicenter of the other world, where cancer patients die at home and receive comfort care, is Mason City, Iowa. Only 7% of cancer patients there die in a hospital.

The author of the report, Dartmouth Medical School professor Dr. David Goodman, says, “We know that the care [patients] receive has less to do with what patients want and is more about the hospitals they happen to get care at. Generally, the care often doesn’t represent their preferences.” In an interview, he said, “On average, patients, particularly with advanced cancer, would much prefer to receive care that allows them the highest quality of life in their last weeks and months — and care that allows them to be whenever possible at home and with their family.” A news release from the National Hospice and Palliative Care Organization cites the study to confirm that many patients receive aggressive treatment when they’d prefer comfort care, and “for frail elderly patients, and any patient with advanced cancer, these treatments have limited or no benefit.”

Limited or no benefit. People living in the worlds of Manhattan and Mason City do not differ in their rates of cancer survival, or how long they are likely to live with advanced cancer.

One of the touchstones of my advocacy is the example set by Jacqueline Kennedy Onassis. Although she lived at the epicenter of the aggressive treatment world, she died like a Mason City native. Diagnosed with non-Hodgkins Lymphoma in early late 1993 or early 1994, she received care at a prestigious academic center — Cornell-New York Hospital. She continued to work as long as she could. On May 18, 1994 she visited her hospital physicians for the last time. She left without allowing them to admit her, returning home instead. There she died the next day.

In announcing her death to the crowds gathered outside her apartment, her son, John Kennedy Jr. said, “My mother died surrounded by her friends and her family and her books, and the people and the things that she loved. She did it in her own way, and on her own terms, and we all feel lucky for that.”

The physicians of Manhattan would do well to learn how to enable patients to follow her noble and courageous example.