Second Opinion: Time for a Better Hospice Law
By Abigail Trafford
Washington Post Staff Writer
Tuesday, October 14, 2003; Page HE01
It's time to tear down the Berlin Wall in medicine -- the wall between curing and caring that separates patients with disease from those with "terminal illness." The wall's foundation is built on a simple Medicare rule: In order for you to get hospice care, a doctor must determine that you will probably die within six months.
Hailed 20 years ago as a gateway to better care for the dying, the six-month rule has become an obstacle to quality care -- on both sides of the divide.
For starters, doctors have a difficult time predicting when death will occur. The six-month rule is based on a cancer model of dying, but even cancers don't adhere to such a neat timetable. For many other diseases, from Alzheimer's to heart failure, the distinction between dying sometime soon and failing for an indefinite period is completely blurred.
More important, patients and their families balk at receiving an official death sentence and living on a kind of medical death row for six months -- even when they know they have a lethal disease.
As a result, too few people with severe illness get the supportive care they need to manage symptoms. Most patients, dying or not, stay on the side of the wall where they get aggressively treated in medical facilities and miss out on supportive care at home and in the community.
Despite urgings from federal health officials, the hospice benefit in Medicare remains underused.
More than 80 percent of people who die in the United States are on Medicare. And most die of a chronic illness where they would benefit from relief of symptoms and supportive care in the months or years before death. But only 20 percent get any hospice care, and most for only a few days or weeks.
Brenda Wilson of Temple Hills thinks about the wall and her parents. When her mother was diagnosed with kidney cancer in January, the cancer had already spread to the liver and lower lung. But the 74-year-old woman, who had survived triple bypass surgery the year before, was a fighter and she started a course of chemotherapy. Seven months later, her condition was worsening. The last time she saw the doctor, "he took her hand," recalls Wilson. "He told her . . . there doesn't appear to be anything else we can do."
Her mother entered a home hospice program and died 10 days later.
Wilson praises the hospice experience. The control of symptoms: Her mother needed oxygen to breathe. The relief of pain: The nurse could treat her at home with morphine. Meals and proper nutrition. Counseling for the whole family. Her mother died in her sleep with her grandchildren singing a spiritual.
But it was so little, so late. Where were the supportive services to help her mother manage her symptoms right after her diagnosis? "We could have benefited from hospice earlier," says Wilson, who works at the Federal Transit Administration. But when the doctor first mentioned the h-word early in the course of the disease, "my mother did not want to talk about it," says Wilson. To her parents, hospice was another word for hopeless. "You think as long as you don't accept those services, you're okay," explains Wilson.
Now her father, 76, is living alone. He has diabetes and has had one leg amputated. He requires insulin and other medications. If he were in a hospice program, a nurse could come to the house and order prescriptions, monitor his symptoms and do blood tests. Instead he has to go to a doctor's office for blood work, another medical center for help with his prosthesis. In hospice, a social worker would check on his condition. He'd get meals and counseling. Wouldn't that be quality medical care for her father, too?
But her father is not dying -- not according to Medicare's six-month rule, so he is not eligible for these caring services under the hospice umbrella.
"The idea that we can draw a neat line between hospice-type care and the rest of the health care system turned out to be not true. We just can't," says physician Steven H. Miles at the Center for Bioethics at the University of Minnesota Medical School. "I think we should get rid of the wall."
The wall also forces people to make a choice between cure and care. Those who go over the wall into "end-of-life care" have to forgo therapeutic treatments. They leave the land of mainstream medicine. Wilson's mother, for instance, lost contact with the physician who had treated her cancer. "We never talked to the doctor once she was in hospice," says Wilson.
Patients who stay on the cure side of the wall have the opposite problem. They have to forgo hospice services. Most people don't want to give up the chance at a potential cure. Yet a woman with advanced breast cancer who pursues chemotherapy could benefit from the psychosocial supports of hospice. Even patients who are enrolled in research studies to test tomorrow's therapies are not eligible for hospice because technically they are still getting curative medicine.
To be sure, there are facilities that integrate therapeutic and supportive services for people with chronic diseases, but they are not the norm. The wall stands in the way.
Tearing the wall down would likely increase the demand for hospice-like care. "That's not necessarily a bad thing. We don't take into account the ultimate quality of life that's occurring to patients and their families," says Edward Lawlor, dean of the School of Social Service Administration at the University of Chicago.
Defenders of the wall are worried about the cost. But advocates argue that greater use of low-tech services in the home might also lead to fewer hospitalizations. "It would probably be an add-on. But there's no evidence it would break the bank," continues Lawlor, author of "Redesigning the Medicare Contract: Politics, Markets, and Agency."
"You don't want to throw it open to anybody who wants a back rub," cautions Jo Anne Lynn, director of the Washington Home Center for Palliative Care Studies. But "it's time to bring these services into mainstream medicine."
Congress would have to change the six-month rule, and there's no sign of that happening. "We don't have a public constituency," says Lawlor. Most people don't come up against the wall until someone is very sick in their family. "That's a poor time to get somebody politically motivated," says Lawlor.
When telemarketers interrupt people at dinnertime, an instant army of 50 million Americans puts pressure on Congress to stop the assault. But there's no army of constituents to make Congress tear down medicine's Berlin Wall. They are too busy coping, care-taking, grieving. •
© 2003 The Washington Post Company |
