Sunday, July 29, 2007

Letting Go of the Rope -- Aggressive Treatment, Hospice Care, and Open Access

NEJM: Alexi A. Wright, M.D., and Ingrid T. Katz, M.D., M.H.S.

More Americans are choosing hospice for end-of-life care, but ironically, hospice patients increasingly are forced to give up effective palliative treatments along with aggressive medical intervention. For Joanne Doolin, a 64-year-old mother of three who spent her last 2 years of life fighting colon cancer that eventually made it impossible to eat, enrollment in hospice care involved a difficult trade-off: with only a few weeks left to live and her daughter's wedding approaching, Doolin was forced to choose between entering hospice care and continuing to receive total parenteral nutritional support.

Unfortunately, treatment options are often limited by the economic constraints of hospice care. The hospice that was the closest to Doolin's Boston-area home would accept only patients willing to forgo life-sustaining treatments, including chemotherapy and parenteral nutrition. It cares for only about 20 patients at a time with three nurses, a manager, a part-time chaplain, and a medical director who works there one morning a week. As a small program, it cannot negotiate pricing or spread the cost of expensive medications across many patients. A few large hospices offer what is called open-access care, which allows patients to add hospice care to their current medical treatment, but this option is not available in Massachusetts.

The Medicare hospice benefit reimburses hospices on a per diem basis, paying fixed inpatient and outpatient fees regardless of services provided. Despite adjustments for inflation, the fees have not kept up with the cost of cutting-edge palliative treatments. Many patients who meet the criterion for hospice care — having less than 6 months to live — still opt for palliation from oral chemotherapies, radiation, antiemetics, or blood transfusions. But these treatments can cost more than $10,000 per month — too much for most hospice programs. ...

Although some observers worry that nationwide open access could bankrupt Medicare, most agree that per diem reimbursement rates remain unacceptably low: in 2006, hospices were paid an average of $563 per patient per day for inpatient care (which represents 2.7% of Medicare's total hospice payments) (see Table 2). The average outpatient fee was $126 for a typical day of care, an amount that must cover nursing care; contributions from social workers, chaplains, and volunteers; and all drugs and durable medical equipment, as well as 13 months of bereavement support. ...

A few large hospices and insurance companies are trying to prevent these situations with open-access programs. Last year, Capital Hospice, based in Washington, D.C., paid for palliative chemotherapy, radiation, dialysis, blood transfusions, parenteral nutrition, antibiotics, and other expensive intravenous medications. With an average daily census of 606 patients, the program can spread out the expense. President and chief executive officer Malene Davis likens open access to "two ropes hanging from the ceiling. We've asked people to hold on to the aggressive-treatment rope with both hands," she says, "but when they go on hospice we tell them to let go completely. Open access gives people the choice to let go of active treatment with one hand and grab on to the hospice rope until they feel comfortable letting the other hand go."...

"Whoever wrote [Medicare's hospice] policy has never taken care of sick patients," argues Diane Meier. "Our patients are fighting for their lives and will do anything to extend the length of time they live, as long as they have some quality of life."

These issues arose for our family as we contemplated hospice care for my dying father. We were more sophisticated than many facing these choices, and fortunate that we had located an outstanding geriatrician used to working with hospice, and had private resources to supplement the Medicare hospice budget. While collaboration among physician, hospice team, and institutional staff was not seamless, and some tricky issues needed to be resolved, mostly it worked out, and hospice was a great help. But the integration of hospice philosophy and skills with mainstream medical care is very much a work in progress; we were very concerned that access to mainstream interventions for intercurrent illnesses and symptom relief might be curtailed or unavailable under the hospice contract we were presented with. We reached some informal understandings, which fortunately were never tested in reality; we can't know for sure what would have happened if they were.

Whether full "open access" is the right answer is not altogether clear to me, but the time is rapidly passing for viewing hospice and mainstream medicine as mutually exclusive alternatives; finding paths to more flexible and integrated options for patients and families represents the challenge for the coming generation of end-of-life care.

An interview with Dr. Timothy Quill, director of the Center for Palliative Care and Clinical Ethics at the University of Rochester, can be heard at

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