Home Deaths Unnecessarily Costly, Burdensome for Families

Newswise — As many as two-thirds of families who care for a dying loved one at home experience financial strain, a study on end-of-life-care for the elderly revealed.

Although only 1 percent of those surveyed in a recent study were without Medicare or private health insurance, the financial burden is high for their family caregivers.

"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," said Dr. Virginia Tilden, dean of the University of Nebraska Medical Center College of Nursing and lead author of "Out-of-Hospital Death: Advance Care Planning, Decedent Symptoms, and Caregiver Burden." "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," Dr. Tilden said.

"In the wealthiest country in the world, two-thirds experience financial hardship. 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," Dr. Tilden said.

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 U.S. 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.

As the national trend in where terminally-ill people die shifts from hospitals to community-based settings, researchers say in this study that new clinical skills and health policies are needed for support and services for individuals and their families.

Scientific information about families' experiences of caring for the terminally-ill in community settings is lacking, the authors said. They surveyed 1,189 Oregon families, working from death certificates of those 65 and older who died in the community from natural causes. Tilden's co-researchers included Dr. Susan Tolle from the Oregon Health & Science University, Portland, Ore., and the article was published in the Journal of the American Geriatrics Society. The research was supported by the National Institute of Nursing Research and The Robert Wood Johnson Foundation.

Dr. Tilden 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."

"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 and getting up and walking out of the hospital."

Another major finding in the study 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. Aggressive management and early treatment can help prevent and ward off the symptoms," Dr. Tilden said.

"As hard as our health professionals are working, there still is a lot of 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 that currently only 25 percent use hospice care at end-of-life.

Dr. Tilden has published more than 78 research and other articles and has made more than 105 national and international presentations.