An update on how we die in the U.S.

My mother died last summer one month after being diagnosed with an ugly stomach cancer.  The oncologist she saw only once handled the discussion of options masterfully.  My mom chose no further explorations, no treatment beyond pain control, and spent her last month at home, with hospice care and with up to 15 helping family members by her side much of the time.  It was one of the rare “good, quiet” deaths – especially in the face of a sudden, ugly diagnosis.

The Los Angeles Times reports, “Quiet deaths don’t come easy,” about “A study (that) finds that Medicare patients near death are increasingly choosing hospice or palliative care over heroic measures in their last days — but that many go through futile hospitalizations and treatments first.” Excerpt:

During the decade studied, the proportion of patients who spent part of their last month in an intensive care unit grew from 24% to 29%, and the percentage who were hooked to a ventilator rose from 8% to 9%. Among dying patients, the median number of disruptive moves — for example, from nursing home to hospital, from hospital to hospice, from rehabilitation facility to home — grew from 2.1 to 3.1. Among those who spent their final days in a hospice program, 28% were there for under four days.

“I suspect this is not what patients want,” said Dr. Joan Teno, a palliative care physician and professor of health services policy and practice at Brown University, who led the study.

In surveys, almost 9 in 10 Americans say that when the end is near, they would prefer to die at home, with medical care that maximizes their comfort and minimizes the pain and turmoil of treatments aimed at extending, not saving, their lives.

Those evolving views have helped drive a surge in U.S. hospice programs from 2,300 to 3,500 during the 10 years of the study. It also fueled the growth of hospital-based palliative care that places more emphasis on maximizing the quality rather than the quantity of patients’ remaining days; the number of such programs doubled during the same period and is now available in 63% of American hospitals.

But the latest research suggests that patients’ wishes may not be getting through to the family members and physicians who help guide patients’ end-of-life journeys. As a result, their final days are far from what most would consider ideal.

“There’s almost always, in every medical circumstance, one more thing we can try,” said Dr. Julie Bynum, a gerontologist at Dartmouth’s Geisel School of Medicine and coauthor of the study. “It’s hard for a doctor to say, ‘I have one more thing I can do, but it’s not a good thing.'”

The time to begin the conversation with family members and doctors about end-of-life care is well before the final crisis begins, she said. If a patient’s wish to avoid aggressive treatment is clear, “you need to prevent him from getting into that cycle of acute care,” she added, “because once they get into the hospital, it’s really hard to get them out.”

The study is published in the Journal of the American Medical Association and is available free.

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