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For a growing number of Americans, the final year of life is marked by pain, depression and other distressing symptoms, a study has found.
Experts said the study, published in Annals of Internal Medicine, highlights disturbing shortcomings in the U.S. health care system.
Researchers found that between 1998 and 2010, the number of Americans who suffered pain in their last year of life rose from 54 percent to 61 percent.
Meanwhile, the prevalence of depression rose from 45 percent to 57 percent, while other symptoms — such as breathlessness, confusion, severe fatigue and incontinence — either increased or did not improve.
“These findings are troubling,” said senior researcher Dr. Karl Lorenz, of the Pardee RAND Graduate School and the University of California, Los Angeles.
The increase in end-of-life symptoms, Lorenz said, has occurred despite national efforts to improve end-of-life care, dating back to the 1990s.
Those efforts have made a difference. The number of Americans in hospice care doubled between 2000 and 2009, the study noted. Hospice care focuses on easing symptoms and improving quality of life for people with a terminal illness.
But often hospice care isn’t offered until the last few weeks or days of life, Lorenz said.
“It’s often ‘tacked on’ to more-intensive care,” he said.
However, another expert said the findings are not actually about the typical American’s final year of life — because many people with chronic diseases are suffering these symptoms long-term.
“I think the findings are very valid, but the conclusions about what they mean are not,” said Dr. Sean Morrison, who directs the Hertzberg Palliative Care Institute at Mount Sinai Icahn School of Medicine in New York City.
“I think you’d see a high prevalence of these symptoms if you looked at older adults’ last two years of life, or last three, or last five,” Morrison said.
The issue, he said, is that more and more Americans are living longer with chronic ills — from heart and lung disease, to painful arthritis, to Alzheimer’s disease. At the same time, the health care system has grown increasingly specialized and “organ-specific,” with less focus on primary care.
“We’re doing a very poor job addressing the multiple health conditions so many older Americans have,” Morrison said. “We’re focusing on treating organs, and not on improving people’s quality of life.”
Morrison said the health care system — including medical schools — needs to pay much more attention to palliative care.
Palliative care refers to therapy that focuses on easing physical or psychological symptoms, rather than curing a disease. Hospice care, which is intended for people with a limited time to live, is one form of palliative care.
Other forms, though, can start as soon as a serious medical condition is diagnosed, and given along with treatments aimed at battling the disease. Usually, a team of providers, including nurses, nutritionists and social workers, is involved.
But Morrison said that to many people, including doctors, “palliative” is synonymous with dying. So it’s often not offered, even if it’s locally available.
“Other research shows that the overwhelming majority of Americans do not have access to high-quality palliative care,” Morrison said.
The current findings are based on a periodic health survey of older Americans. Between 1998 and 2010, slightly more than 7,200 study participants died, and their family members were asked about symptoms their loved one had suffered in the last year of life.
Over time, problems like pain, depression, periodic confusion and incontinence grew more common. Other symptoms, such as fatigue and severe weight loss, held fairly stable.
Lorenz said part of the increase could be due to awareness. More doctors may be asking family members about those symptoms — which would be a good thing, he said.
But the fact that pain and other distressing symptoms are so common is disturbing, he said.
Morrison agreed. “This really is an indictment of the health care system,” he said. “And the public should be outraged.”
He and Lorenz suggested that older adults ask their doctors about any palliative services available for their symptoms — at any point in the course of a disease.
Medicare covers hospice care, and many Medicare Advantage plans pay for other palliative services, Morrison noted.
But relatively few research dollars, he added, go into palliative care. “We invest so much in finding disease cures,” Morrison said. “We should also be investing in making life better for the people living with these diseases right now.”
Reprinted with permission from Spectrum Health Beat.
