As the nationwide trend in where terminally ill people die shifts from hospital to community-based settings, researchers say new clinical skills and health policies are needed for support and services for people and their families.
This was the conclusion of an article recently published by Virginia Tilden, D.N.Sc., dean of the UNMC College of Nursing, and her former colleagues at the Oregon Health & Science University in Portland, Ore. Their conclusions support a wealth of articles on the subject, including a 1997 report by the U.S. Institute of Medicine, “Approaching Death: Improving Care at the End of Life,” which urged better attention to the quality of life for dying patients and their families.
Published in the Journal of the American Geriatrics Society, the article, titled “Out-of-Hospital Death: Advance Care Planning, Decedent Symptoms, and Caregiver Burden,” focused on what families’ experiences were in helping to take care of the terminally ill. The National Institute of Nursing Research and The Robert Wood Johnson Foundation supported the study.
The team conducted the study in part because of the lack of scientific information about families’ experiences of caring for the terminally ill in community settings. The study contains information of family experiences as it cares for a terminally ill family member the last six months of life.
Working from death certificates of those 65 and older who died in the community from natural causes, the researchers surveyed 1,189 families. In the United States each year, about 2 million Medicare beneficiaries die, a number that officials estimate will increase with America’s aging population.
Dr. Tilden said the objective was to examine the end-of-life experiences of older adults dying outside of the hospital setting, and their family caregivers. The faculty members conducted the study in Oregon, where Dr. Tilden served before joining UNMC. In Oregon, like in most states across the United States, the vast majority of Medicare deaths occur in community settings.
She said as the country moves from medically aggressive, and sometimes unnecessary treatment, to more palliative care for the terminally ill, more people are dying in community settings such as the home, in nursing homes or hospice. Palliative care focuses on the management of symptoms and improving quality of life of a terminally ill person.
“Overall, there is a trend toward moving end-of-life care to community settings, such as home, in-patient hospice, nursing home or assisted living,” Dr. Tilden said. “Out-of-hospital death rates are an important indicator of less aggressive and more palliative treatment at the end-of-life.”
Researchers say one of the major and most startling findings of the study was the number of families who experienced financial strain. Though only 1 percent of those surveyed were without Medicare or private health insurance, the financial burden was high for families.
“Our study adds verification that the family shoulders a lot of the financial burden in the last six months of care in a community-based setting,” Dr. Tilden said. “You have exhausted families ending up with serious medical bills and out-of-pocket expenses. It’s not satisfactory from the family perspective. The costs are not what people want.
“In the wealthiest country in the world, two-thirds experience financial hardship,” she said. “One-third lost all their savings taking care of their loved one. If we value taking care of people until they die, we can’t ignore how much care and cost is shouldered by families. At an increasing rate, families are in that picture.”
Medications account for one of the highest out-of-pocket expenses for families – mostly for pain medications, she said.
According to the Dartmouth Atlas of Health Care 1999, the percentage of Medicare deaths in the United States that occurred out of the hospital ranged state-to-state from 51.2 percent to 90.1 percent, indicating a wide regional variation in how and where end-of-life care is managed.
The rate in Nebraska of the terminally ill who die at home versus the hospital varies from city to city. According to the Dartmouth Atlas Quick Report for Iowa and Nebraska, the likelihood of a hospitalized death ranged from 23.9 percent to 35.3 percent in 1999. Dr. Tilden said the Nebraska statistics reflect what most Americans want.
“Surveys show the majority of Americans say they don’t want to die hooked up to machines in a hospital,” Dr. Tilden said. “They say they’d rather die in a place that’s familiar to them – in their home or nursing home. Of course, there’s a time and a place for aggressive medical care if there’s a chance of recovery.”
Another major finding was poor management of some of the most common distressing symptoms at the end of life, including pain, shortness of breath and constipation.
“Community-based care is good, but more steps need to be taken to manage distressing symptoms and give support to the family,” Dr. Tilden said. “Aggressive management and early treatment can help prevent and ward off the symptoms.
“As hard as our health professionals are working, there still is a high level of unacceptable occurrences of these manageable symptoms. Witnessing a loved one suffer is difficult for caregivers. We would like to see clinicians be more aggressive in management of these symptoms,” she said.
Through the study, Dr. Tilden and her colleagues also found many families aren’t aware that hospice care is free for Medicare recipients. She said for various reasons, including the fact that some people die before they get into hospice, there is only a nationwide average of 25 percent hospice use.
Dr. Tilden has published more than 78 research and other articles and has made more than 105 national and international presentations.
The Journal of the American Geriatrics Society is published by the American Geriatrics Society, a 6,000-member premier professional organization of health care providers dedicated to improving the health and well-being of all older adults.