Palliative care: Mainstream model

Efforts to change the culture of dying in acute care settings are no longer on the fringes of medicine. Some physicians have proven that hospice-like care can coexist -- and even cohabit -- with hospitals.

By Vida Foubister, amednews staff. Feb. 26, 2001.

New York -- The "aha event" that led Diane E. Meier, MD, to start a hospital-based palliative care program grew out of the death of a 73-year-old Latino man.

It had little to do, however, with the admittedly horrible way he spent the last 29 days of life -- his feet and hands tied to the bed in four-point restraints to keep him from pulling out a nasogastric tube. Such a death in an acute care setting, where the tendency is to err on the side of life, is far from exceptional, she explained.

Where the money comes from

Instead, Dr. Meier, now director of the Lilian and Benjamin Hertzberg Palliative Care Institute at Mount Sinai Hospital in New York City, said she was at first infuriated and then enlightened by the resident on duty and his treatment of this dying man.

"I asked, 'What's going on here? This man is dying. Why is he tied to the bed?' The resident looked at me with tremendous distress in his eyes and said, 'He'll die if I take out the NG tube.' This lightbulb went off over my head: This is not a bad doctor or an evil doctor or even a stupid doctor. He just does not know what to do. He doesn't even know how to think about it."

About 330 hospitals had a palliative care program in 1998.

Dr. Meier and two of her colleagues shared what they had learned from this man's experience in a 1996 New England Journal of Medicine article, "When Too Much Is Too Little." Then they began to look for ways that they could change the culture of dying within their institution.

"Modern medicine was so brilliant at saving lives that we kind of forgot our traditional role of providing comfort at the end of life," said Christine K. Cassel, MD, chair of the Henry L. Schwartz Dept. of Geriatrics at Mount Sinai School of Medicine. "Now we need to take the advances in modern medicine and apply them to relieving suffering."

Success far beyond expectations

Several steps were required after the originating "aha event" to bring about the change necessary to establish an endowed palliative care institute with 14 full-time faculty and four inpatient beds.

First, a core team that included Dr. Meier and three others set out to persuade colleagues in the major specialties taking care of seriously ill and dying patients that something had to be done.

About 50% of Americans die in hospitals.

"We all felt so strongly about this that rather than just take our feelings and try to change the experience for some patients, we wanted to be a catalyst for change overall," explained Jane Morris, RN, clinical director of the institute. With funding from the Faculty Scholars Program of the New York City-based Project on Death in America, they launched an 18-month faculty and staff development series on palliative care in 1996.

To their surprise, the level of interest was overwhelming. About 60 full-time faculty and 30 others, including nurses and social workers, agreed to participate. "People were hungry for this information," Dr. Meier said.

After that a consultation service was established with financing from the United Hospital Fund of New York.

Once again, the institutional response exceeded its founders' expectations. "In the first year we had five times as many consults as we predicted, and that growth has continued," said R. Sean Morrison, MD, research director at the institute and one of four original core team members.

Between December 1998 and November 1999, the palliative care team provided 431 consults. It now serves at least 25% of patients who die in the hospital, up from 14% initially.

To gain further visibility and legitimacy, the service opened a four-bed inpatient unit in 1998. A patient of Dr. Meier endowed the program the following year, giving the institute its present name.

A new era

There have been other changes in the experience of dying patients at Mount Sinai. Team members are no longer being called predominantly for "brink-of-death" consults, where the patient dies within two or three hours or a day, said Cynthia Pan, MD, education director, who joined the institute in 1997.

"Now the consults are much more sophisticated. When they call us, the patient's pain is under pretty good control. There is a period of time where we can have meaningful discussions with the patient about the goals of care," she said.

In addition, about half of the patients for whom the team consults are discharged alive. Morris estimated that nearly 100% died during hospitalization when the service began.

Mount Sinai is certainly not alone in its interest in improving the care of patients who have serious illnesses or are near the end of life.

The Robert Wood Johnson Foundation-funded Center to Advance Palliative Care, which is housed at Mount Sinai School of Medicine, had to turn away from its fall conference dozens of people interested in developing hospital-based palliative care programs.

Many barriers remain

The biggest challenge -- and one that continues to plague even successful palliative care programs like that at Mount Sinai -- is money, or rather the lack thereof.

Only about 15% of physician and nursing salaries at Mount Sinai's palliative care institute are paid through clinical billing.

To date, the institute has survived on philanthropy, grants and some institutional support -- a piecing together of financing that can hardly be viewed as a sustainable model.

The problem is that Medicare does not explicitly reimburse palliative care services provided by physicians or hospitals, leaving most hospitals with little funding to support such services.

But there are a few exceptions, among them a model that's been developed within the Dept. of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York City. Under its chair, Russell Portenoy, MD, the department has grown to include all pain services and a hospice program.

This integration means that the revenue streams coming in for paid services, like nonmalignant pain treatment and hospice care, can be used to support the department's palliative care work. "We're still in a position where the institution is investing in us, but we're moving toward fully sustaining ourselves," he said.

Another model, at California's VA Palo Alto Health Care System, has proven effective. The palliative care program there has contracts giving five home hospice agencies admitting privileges. Veterans also benefit from this arrangement, because the additional revenue allows the program to expand its services. "Using that funding, we have a half-time massage therapist as part of our staff," said James Hallenbeck, MD, medical director of the VA Hospice Care Center.

But the way Medicare has structured the hospice benefit is also viewed as a barrier to good end-of-life care. It requires a physician to certify that the patient is likely to die in six months, and the patient must agree to give up on all curative treatments.

Hospital-based palliative care, by its very nature, blurs those boundaries. "There should be a continuum of care where both curative and palliative therapy are offered at every stage of the disease, but at different times the balance will favor one or the other," explained Daniel Fischberg, MD, PhD, assistant professor in the Henry L. Schwartz Dept. of Geriatrics at Mount Sinai.

Some have suggested that a greater partnership between hospital-based palliative care programs and community hospices might help both succeed. Though hospice services are reimbursed, their growth is limited by the fact that about 50% of Americans die in hospitals.

Robert Wood Johnson Foundation's CAPC has funded a project to look at hospital-hospice partnerships around the country. "Based upon utilizing the expertise and knowledge and availability of hospice, we can impact how those individuals die within an acute-care setting," said Karen A. Davie, president of the National Hospice and Palliative Care Organization.

Nurturing such relationships also might help prevent what some, such as J. Andrew Billings, MD, director of the Palliative Care Service at Massachusetts General Hospital, Boston, fear will be the "inevitable medicalization of hospice" as this type of care is recreated within hospital settings. "The challenge is to have the softer issues recognized," such as attention to comfort, family, psychosocial and spiritual issues, and care in the home, he said. "It's not a pain and symptom specialty, but it's comprehensive end-of-life care."

It wasn't so long ago that mainstream medicine viewed those advocating for palliative care as a fringe element. "People like me and my friends in this field, we were the rabble-rousers," Dr. Meier said. "We were the radicals."

Now her focus is on finding ways to codify palliative care into medical school curricula, board examinations, residency review committee requirements and board certifying exams. "It's down to that level, just the plodding, get it done through the existing structure of medical education and specialty training," she said.

Even within Dr. Meier's own program, structures that are now required given the institute's growth, such as titles specifying responsibility for different functions, don't yet feel comfortable. "We've gotten much more formal recently," Dr. Morrison said, with a touch of regret. "It was a smaller operation five years ago, essentially about four of us who thought this was really important."

That sentiment, however, continues to drive change at Mount Sinai. Right now, there is a focus on broadening the care team to include a social worker with a background in bereavement and others who can formalize the nonmedical aspects of caring for patients and families going through a serious illness.

"The program began with a model that's really been a medical model of care predominantly," Morris said. "But as time goes on, and with the addition of more nurses and other disciplines, we'll fix our model of what palliative care is."