Caring for quality of life

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  • Palliative care programs are growing rapidly across the county.
  • Palliative care deals with caring for the patient's quality of life, not necessarily the curing of the disease.
  • Both terminally ill patients and those who aren't terminally ill can benefit from palliative care.

Suffering is not a foreign concept for hospital patients. When people are seriously ill, suffering becomes a part of life.

But there are ways to manage this suffering. And programs aimed at doing just that have been increasing.

In the 1980s, David Weissman, an oncologist at Froedtert Memorial Lutheran Hospital, saw a void in patient care and did something about it.

"We quickly realized we didn't do a very good job of treating people who were very sick," Weissman said.

So in 1993 he started the palliative care program at Froedtert, one of the first of its kind.

Palliative care tries to maximize a seriously ill patient's quality of life by concentrating on the patient, the family, communication with the hospital staff and the management of symptoms.

People eligible for palliative care have tolling physical and emotional symptoms, said Diane Meier, director of the Center to Advance Palliative Care, a national organization devoted to increasing the number and quality of palliative care programs.

An increasing dependence on other people for help fixing meals or getting dressed is another sign a patient might benefit from palliative care, Meier said.

With the increasingly specialized field of medicine, it is vital for the patient to have some sort of leadership, which is where palliative care is focused, Weissman, also a professor at the Medical College of Wisconsin, said. Patients have more doctors now, so one of the functions of palliative care is help with coordination and communication between doctors and family members, too.

"It's a burden of illness not only on the patient, but on their family and loved ones," Meier said.

"We take the time and have the skills to make sure that everyone involved in the patient's care is on the same page," she said. "It does sound like a no-brainer, right?"

But barriers do exist, she said.

The public perception and the "unfortunate link" in people's minds between palliative care and the end of life make it hard to accept as an option.

"We've started to refer to

palliative care as distinct from hospice care," Meier said. "Because palliative care is medical care focused on relief of suffering and support for the best possible quality of life for anyone with a serious illness, no matter what stage of that illness they might be at."

Though their philosophies are the same, palliative care differs from hospice care because the patient does not necessarily have to be dying, Weissman said. With hospice care, the patient must certify they have less than six months to live, in accordance with Medicare guidelines.

"That's why the Center to Advance Palliative Care is working very hard to make clear that palliative care is not restricted to care of the dying," Meier said.

In 2000 there were 632 hospitals that had palliative care. That number has more than doubled to 1,299 this year, according to the Center to Advance Palliative Care.

Weissman attributed the growth of similar programs across the country to their quality and effectiveness of palliative care programs.

"With good innovations, people want to copy them, duplicate them," he said.

One thing the Center to Advance Palliative Care has done is establish Palliative Care Leadership Centers, which provide training to hospitals interested in starting programs of their own. One such center is located at the Medical College of Wisconsin. The center is one of only eight across the nation.

Weissman and Sandy Muchka are the Leadership Center's co-directors at the Medical College of Wisconsin. Muchka said they're happy to spread their knowledge and practices to those interested.

"We have trained probably around 60 different hospitals that have come through," Muchka said. "I think it's been a hugely accepted program for the groups that we've trained."

Sean Morrison, a professor at Mount Sinai School of Medicine and author of a recent study on the availability of the program, said this is a good start, but further expansion is needed. People can't be expected to travel to where there are programs.

"For patients to benefit from these services, hospital palliative care programs must be available locally within communities across the United States," Morrison said.

In the study, Wisconsin was ranked in the middle 20 percent, with over half of its hospitals offering palliative care. The state also got a "B" in terms of the quality of the programs.

Marquette offers courses in the College of Nursing on death and dying, where palliative care is covered. Students practice with patients in palliative care at clinical centers in the area, said Sarah Wilson, a professor who has taught the course.

She said since Americans are living longer – and with chronic and debilitating illnesses – palliative care is a must. The inadequate service, poor communication and a fragmented approach put an enormous burden on the patient and family. These shortcomings are remedied by using palliative care strategies, she said.

Though palliative care programs do not exclusively treat terminally ill patients, they see their fair share, and do their best to make the end of a patient's life as comfortable as possible, Meier said.

"(Terminally ill patients) need good care for the last months of their life, and families need support in order to accompany the patients through that process," she said.

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