The painful truth of hospice care #niagara #falls #motel

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And a New York mother watches in horror as her dying boy suffers seizures. The young, inexperienced hospice nurse witnessing her first death doesn’t give the boy a drug to stop the convulsions. The mother is told later that the understaffed hospice took her son’s case for the “memorials” the charitable cash donations that often follow a death.

Hospice care traditionally has been viewed as a charitable service offered by professionals whose aim is to ease the suffering of the dying. And while that’s still true to a point, big changes in health care have had an impact, and hospice care has become big business.

As a result, hospice care, like the rest of health care, has become prone to mistakes, as the needs of patients are balanced against the financial bottom line.

“Hospice used to be a volunteer service that was done out of great dedication and love,” says Ron Panzer of the Michigan-based Hospice Patients Alliance. “Medical ethics has turned a corner so we’re not trying to do everything for the patient, but we’re trying to save money.”

It’s easy to abuse the system. The patient always dies, and no one can complain that a hospice program should have saved the life. But some families are beginning to come forward and charge that care was negligent, that pain was not eased, that suffering if not inflicted was at least allowed to continue needlessly.

The families want more oversight of the nation’s hospice programs. And they are not alone. The Institute of Medicine (IOM) is urging the medical community to take a closer look. A report from the prestigious arm of the National Academies, which gathers independent scientists to advise federal policy-makers on matters of science, called in June for sweeping efforts to improve end-of-life care for those “who are dying nameless and faceless without a priority.”

Among the recommendations: studies to show exactly how hospice care is being delivered in the USA.

“We are in the throes of social change, and we don’t have much measurement,” says Joanne Lynn, who was on the panel and also serves as director of the RAND Center to Improve Care of the Dying, based in Arlington, Va. “We should do a random sampling of hospice care and learn what we are doing.”

The business of dying

For a hospice, death means money.

Most people think of hospice care the way it began in the late 1960s and early 1970s, as a charitable service.

But a major shift came in the 1980s when Medicare started paying for such care. The number of for-profit hospices soared, and by 1998, hospice care had become the fastest-growing benefit in the Medicare program.

From 1992 to 1998, the number of Medicare beneficiaries who used hospice care more than doubled, from 143,000 in 1992 to 360,000 in 1998, according to a General Accounting Office analysis. As the federal tax dollars flooded into what had been largely a volunteer segment of health care, fraud sometimes followed.

The government focused on hospice fraud as part of its Operation Restore Trust, a Clinton administration program aimed at stopping Medicare fraud.

The stakes were raised. Suddenly, any hospice that took Medicare money, non-profit or for-profit, faced audits.

“The regulations pile as high as our heads,” says Esther Goodrich, CEO of Genesee County Hospice of Batavia, N.Y. a non-profit hospice that is facing a lawsuit from family members angry over the care given to their dying son. “If you fill out a form incorrectly, and if you do it intentionally, you can end up in jail. Hospices have been taking a beating.”

Length of hospice care declining

A major challenge in hospice care is helping people cross the rugged terrain that lies between hope for a medical miracle and the acceptance of death. Crossing that mountain of denial takes time. But time with the dying and their families is something that hospice lacks these days.

One of the areas under constant federal scrutiny is the length of time that patients stay in a hospice before they die. Hospices must be able to prove to regulators that the end was near for each patient.

When hospices began, workers often entered a home months before a death with plenty of time to help the family prepare emotionally for the death.

But the average length of stay in a hospice fell from an average of 90 days in 1990 to 48 days in 1999, according to the IOM. Half of Medicare hospice users received care for 19 days or less, the General Ac-

counting Office found in a review last year. A week or less was common.

Today’s shorter hospice stays don’t give some families enough time to prepare for the death. And the tighter time frame costs a hospice money.

Medicare pays a flat fee for hospice care about $100 a day. The first days and the final days require the most time from hospice workers. In the first days, a hospice must get up to speed with the patient, the family, the doctor and anyone else involved in the care. In the patient’s last days, hospice workers may be at the bedside 24 hours a day. In between are days when the hospice may only send a worker by the house to offer support and make small adjustments to care that is provided by the family.

When it works, it’s medical magic. Experienced hospice nurses know how to ease a patient and a family toward death.

“There are times when hospice is the best care you can get,” Lynn says. “Where else in the system can you call and a nurse will show up with your medical record?”

But she says that trying to get a patient and a family ready for death fast is difficult and prone to error.

“I call it brink-of-death care,” says Lynn, a former hospice medical director who is now president of Americans for Better Care of the Dying, a Washington-based patient advocacy group. “This is a very difficult time of life. People are terribly sick. There are nursing shortages and financial shortages. Everything is weighted in a system that has no give.”

“These cases are just the tip of the iceberg in a big iceberg field,” says Panzer, the former Michigan hospice nurse who quit to become a patient advocate in 1997. His Web site,, has become an unofficial clearinghouse for hospice information. “The reality is that hospice is no different than any other part of health care; it’s just not being reported.”

Goodrich says that mistakes sometimes are made. But she says that hospice care is an emotional, heavily regulated business. Sometimes hospices become the target of the intense anger that comes with a family’s grief, she says. She sees such complaints as part of a job that is fraught with emotional risks.

“You are stepping into the middle of somebody’s anguish. You are dealing with grief in action,” Goodrich says. “What you don’t see is that grief is a process. One way that grief takes its toll is it finds a place for blame.” It is not uncommon, she says, for hospice workers to become the target of that intense emotion.

“That’s OK,” Goodrich says. “You have to look at that and say that is a need. They need to be able to do this, and we need to be big enough to let that happen.”

More attention on end-of-life care

The National Hospice and Palliative Care Organization, a Virginia-based non-profit group that represents hospice programs, has begun a two-year study aimed at measuring pain control and respiratory care and assessing whether the 1,800 patients in the study died with dignity and without unnecessary pain.

The $750,000 study of 15 hospices, funded by the Robert Wood Johnson Foundation, is just one of several underway. The IOM wants much more.

In its June report, “Improving Palliative Care for Cancer,” the IOM called for more of the nation’s annual $3.3 billion war on cancer to go to research on improving end-of-life care.

With 550,000 cancer deaths each year and about one in four of all deaths occurring while in hospice care, improving the quality of palliative care is a huge issue.

“Not a lot of research has been done,” says Stephen Conner, who is heading the national hospice study. “We have neglected the whole field of palliative care in favor of delivering new cures for disease and high-tech treatments.”

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