The vast majority of Americans forgo valuable end-of-life care
SUNDAY, Dec. 16 (HealthDay News) -- Hospice care helps terminally ill patients prepare for death, treating their symptoms and pain and preparing them -- and their families -- for the end.
The patients maintain their dignity and some semblance of control over their life. Their families receive counseling to help them come to terms with their impending loss.
It's humane. It's caring. It's thoughtful.
Why, then, do so few Americans chose to receive hospice care, even though Medicare covers the expense?
A study published in July in the New England Journal of Medicine found that only one-third of Americans die under the care of hospice, despite hospice being essentially free of charge.
And those who avail themselves of hospice care often aren't getting the full benefit of it, said Dr. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, the world's oldest and largest nonprofit membership organization devoted exclusively to promoting access to hospices.
"They hold off the ultimate [decision] until they finally have to face it," Schumacher said. "And when we speak to families, the question we hear over and over again, is, 'Why didn't we come into hospice sooner?' "
There currently are more than 3,500 hospices in the United States, and more are being built every year, Schumacher said. "Approximately 500 new hospice licenses were issued over the past two years," he said.
Hospice care is end-of-life care provided by health professionals and volunteers.
The hospice plan provides medical, psychological and spiritual support, the goal of which is to help people who are dying experience peace, comfort and dignity. Caregivers control pain and other symptoms as much as possible, so a person can remain as alert and comfortable as possible.
But hospice also focuses on the family members as well, helping them deal with the reality of death, said Carol Spence, director of research for the National Hospice and Palliative Care Organization.
"We outright make the patient's family our unit of care, so there's a lot of attention given to the family caregivers, including bereavement care following the death of the patient," she said.
Usually, patients are given hospice care when they are expected to live six months or less. Hospice care can take place at their home or in a hospice center. Seeing the value of the care, hospitals and nursing facilities also are opening hospice units to help the dying.
Part of the difficulty in choosing to use a hospice can be how hard it is to really know how much time a person has left, Spence said.
"It's difficult in general to come up with an accurate picture of disease projections," Spence said. "People are living with chronic illnesses that will have an inevitable downward course, but knowing precisely when death will approach is not an easy thing.
"Bringing hospice in doesn't mean they're going to die tomorrow. It means a better quality of life for whatever amount of time you have left, whether it's a week or a month or six months," she continued.
Another possible reason for people failing to use hospice can be found in American attitudes toward dying -- going to hospice can seem the equivalent of "failing" or "giving up," she said.
"Our American culture is death-averse," Spence said. "The medical community and the general population, the attitude is shown in the metaphors used, whatever the disease you have -- 'I'm going to fight it, I'm going to beat it.' "
There's also some misunderstanding over who can utilize hospice care, with many people believing it's mainly for those dying of cancer. In fact, about 40 percent of U.S. hospice admissions are for patients suffering from some other life-ending disease, such as end-stage heart disease, dementia, lung disease or stroke, according to the National Hospice and Palliative Care Organization.
The misunderstandings also involve the cost of care. Many people believe hospice is too expensive or out of their price range, even though Medicare or private insurance covers the full cost of hospice care.
Despite all this, the number of hospices and the number of people turning to them are expected to grow as baby boomers enter retirement age and begin facing their own mortality, said Schumacher, a member of that generation himself.
"We're as much a part of this death-denying culture as anyone, but we are consumers, and we look for alternatives," he said. "I think in the long run, we will be a group who will choose this option much sooner."
To learn more, visit the National Hospice and Palliative Care Organization.
SOURCES: Donald Schumacher, Psy.D., former chief executive officer of Hospice Buffalo, and current president and CEO of the National Hospice and Palliative Care Organization, Alexandria, Va.; Carol Spence, director of research, the National Hospice and Palliative Care Organization
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