End-of-life care: Many final wishes not fulfilled, research shows

February 7, 2013 | by Tami Dennis

Many Americans say they’d prefer to spend their final days at home, with control over their surroundings and with the comfort that only a familiar setting can provide. Instead, too many people are having only part of that wish realized: Although their death occurs at home, their final days are increasingly spent in turmoil, undergoing medical care that ultimately proves futile.

Although more Americans are dying at home, the days before death are increasingly filled with ICU care and hospital stays. Although more Americans are dying at home, the days before death are increasingly filled with ICU care and hospital stays.

Noting the statistics on the rise in deaths at home – and questioning whether that truly means that Americans are getting what’s commonly called a good death, researchers at Brown University and elsewhere examined data on Medicare beneficiaries, age 66 and older, who died in 2000, 2005 and 2009. All the patients had been diagnosed with cancer, chronic obstructive pulmonary disease or dementia within 180 days of their death.

The researchers wrote: “Site of death, as noted on a death certificate, only provides information on where a person was at the moment of death. One patient may have spent the last week of life in a home, hospital and nursing home, while another patient may have been at home until the day of death, when hospitalized for pain control. Both patients would have an identical site of death, but a convincing argument can be made that the experience was different.”

The researchers found that, although fewer people died in an acute-care hospital in 2005 and 2009 than in 2000, ICU use and hospitalizations have increased in the final months of life. Specifically, in 2009, 29.2 percent of those studied were admitted into the ICU, and 11.5 percent had three or more hospitalizations.

"There's almost always, in every medical circumstance, one more thing we can try," Julie Bynum, M.D., M.P.H., a gerontologist at Dartmouth's Geisel School of Medicine and co-author of the study, told the Los Angeles Times. "It's hard for a doctor to say, 'I have one more thing I can do, but it's not a good thing.'"

The results were published in Journal of the American Medical Association.

But there may be one more thing that doctors can try that would indeed be a “good thing”: Provide spiritual care.

Betty Ferrell, Ph.D., R.N., a world-renowned City of Hope expert in palliative care, has found that spiritual care is missing for many terminal cancer patients – spiritual care that they very much need.

"We need to help clinicians understand how to assess their patients' spiritual needs, how to have that conversation and what to do with that information," she recently told WUWM-FM in Milwaukee.

Ferrell is a professor in the Division of Nursing Research and Education, part of the Department of Population Sciences at City of Hope. She’s created a curriculum for nurses and other health-care professionals that helps them address patients’ end-of-life needs.

"When someone is facing a life-threatening disease, often the important part of spiritual care is to sit with them and say, 'Tell me your story, who are you, what have been the highlights of your life, what are the things you want your family to know, what is your legacy,'" she told the radio station.

As Ferrell knows, and as the new research shows, dying at home is just one part of having control over the end of life.

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