Life-saving AIDS therapy forcing hospice to reconsider its mission
Life-saving AIDS therapy forcing hospice to reconsider its mission
Some facilities closing, cutting back under financial impact
In an ironic twist of fate, a new drug therapy offering renewed hope of survival to AIDS patients may be threatening the very heart and soul of the hospices that see many of them to their deaths.
Protease inhibitor drug therapy has shown near-miraculous results in the sickest AIDS patients, who until now had fit well into the hospice philosophy of offering only comfort and palliative care to the dying. But more AIDS patients now want to try the new antiretroviral drugs, regardless of how close to death they may be.
This situation pits patients who want to try aggressive treatment against the hospice mode of care, which dictates that life should not be prolonged in the face of terminal illness, says Pat Gibbons, BSN, CRNH, nurse manager for Beacon Place, an AIDS special care program of Hospice of Greensboro (NC).
The new drugs now are forcing the managers of hospices that see mainly AIDS patients to question their core beliefs. "We are facing a new block of hospice patients those who don’t want to give up and we can’t blame them," says Terri Ford, executive director of Linn House, a 25-bed AIDS hospice opened last year in West Hollywood, CA.
But protease inhibitors are raising more dilemmas than the philosophical ones for hospice managers. Patients’ reluctance to give up hope of survival also is threatening the financial survival of many hospice programs across the country because inpatient hospice beds are emptying as more AIDS patients use the life-sustaining therapy.
In addition, the new drug treatment costs are high (between $10,000 and $12,000 annually per patient), and some hospice programs find it hard to recoup costs under the Medicare per diem rate. (See related story on protease inhibitors’ impact on state budgets, p. 3.)
Traditionally, most hospices deal with cancer victims. When AIDS became a growing problem, some hospices grew up dealing just with AIDS victims, or allocated many of their beds to AIDS patients. As protease inhibitors are used more widely, hospice programs with a high number of AIDS patients are losing those patients to home care and with them, the income the hospices need to survive. "Protease inhibitors have hospice managers worried from a number of perspectives: We want to offer hospice care for AIDS patients, we want to treat patients appropriately, but we don’t want to go broke," says Gibbons.
As these hospice managers struggle with these wrenching new challenges, many are asking: Is the philosophy of non-aggressive care really the core of hospice, or is it an indirect response to an outmoded health care delivery and payment system that does not meet patient needs? What is the true mission of hospice?
For some, that answer is clear-cut. "The Medicare benefit is totally artificial and should have nothing to do with whether a patient receives palliative treatment," says Carla Alexander, MD, medical director of the Johns Hopkins Home Hospice program in Baltimore. "In reality, this is a really difficult decision for the manager of a hospice program to make," she says.
"This debate seems to assume a separation between palliative care and active treatment," says David Ouchterlony, MD, a palliative care physician and director of palliative medicine, a home-based outreach program at Mt. Sinai Hospital in Toronto, Ontario, Canada. Ouchterlony contends, however, that it is really a payment issue.
In Canada, hospice programs are not constrained by Medicare benefit periods and arbitrary terminal diagnoses. "Our money comes from the same pool, so it doesn’t matter where the patient is receiving care. We don’t have to insist that patients stop active treatment such as protease inhibitors to fit a payment category," he explains. Ouchterlony says patients in Canada are screened for appropriate hospice admission based on a recognition of the number of inpatient hospice beds available.
Many terminal patients, including those suffering from AIDS, are followed by their primary care physician, who offers palliative care and may call upon specific palliative services such as Mt. Sinai’s for additional consultation and support, Ouchterlony says.
A renewed emphasis on palliative care and collaboration with other health care providers is one way to confront the philosophical and financial challenges posed by protease inhibitors, say hospice professionals who are close to the debate.
They also outline these four basic management issues created by the advent of protease inhibitors, along with possible ways to address them:
1. Financial impact. For some programs like Beacon Place, the number of AIDS patients represents nearly half the hospice patient population. Others, like Linn House, were created solely for AIDS care. Losing these patients creates a major shortfall.
Ford says hospice programs must look at dual certification as one antidote to financial insolvency. This may mean certification as a home health provider or a respite care facility. Linn House opened in early 1996 as the first of three AIDS hospice facilities operated and funded by the AIDS Healthcare Foundation in Los Angeles. Another hospice opened under the program, the 25-bed Chris Brownley House, closed its doors early last fall due in large part to the success of protease inhibitor therapy among its patients. Ford says the site will reopen in early 1997 as a residential care facility for the chronically ill.
Other hospice programs have faced similar financial difficulties. At Haven House, a home for terminally ill AIDS patients in Atlanta, as many as 15% of all patients receiving care in 1996 were discharged early because of improved quality of care and treatment.
At Hospice Life Care of Holyoke (MA) Visiting Nurse Association, three or four of the average daily census of 30 patients were victims of AIDS, according to Gary Reiter, MD, associate medical director of the hospice. In the aftermath of protease inhibitor therapy, that number dropped to only one patient.
A larger question for hospice finance managers is how to interpret the Medicare hospice benefit period for AIDS patients. In response to this dilemma, the Arlington, VA-based National Hospice Organization (NHO) recently revised its guidelines for determining prognoses in non-cancer diseases. (See AIDS criteria, p. 5.)
The new guidelines include specific information for prognosis in patients taking protease inhibitors. But Alexander, who was a member of the NHO standards and accreditation committee that developed the guidelines, cautions that there are significant limitations. For example, patients may experience a change in CD4 count and viral load, and therefore have a prognosis longer than six months according to these guidelines. Yet, warns Alexander, "So much is changing so fast that no published data can really predict what is going to happen with these patients. We just do not know."
2. Appropriate admissions criteria. Most physicians say if AIDS patients are already taking protease inhibitor drugs, they are not hospice-appropriate. But they also agree that generalizations should not be made. More important is how the treating physician discusses the issue and avoids confusing patients.
"I think it is an incredibly mixed message for a treating physician to say to someone, Here, take these protease inhibitors, and by the way, we are going to put you in hospice,’" says Alexander. "If you really believe protease inhibitors are going to help patients [and the patient is responsive], then they do not have a shortened life expectancy right now, and you cannot project what that life expectancy is going to be."
Others agree that the new drugs do not fit the mission of hospice. "Protease inhibitor therapy is simply not palliative," says Reiter of Hospice Life Care. "If a hospice patient of mine wants to take these drugs, I tell them to leave hospice, help them transition into home care, and tell them I’ll be glad to take them back in hospice if necessary," he says.
On the other hand, Michael Wohlfeiler, MD, JD, assistant medical director of VITAS Healthcare Corporation in Miami, worries that once patients leave hospice care, many permanently forfeit their Medicare/Medicaid hospice benefit.
Since generally there is a significant improvement in the patient’s viral load within a month after beginning protease inhibitor therapy, Wohlfeiler recommends keeping patients in hospice for 30 days after the start of antiretroviral treatment, doing two viral screens within that period, and reassessing the patient’s prognosis. He admits, however, that this is a costly strategy for a hospice since it will have to absorb the cost of care for a month.
Other hospices like Linn House are moving toward the one-month option, says Ford.
3. Clinical management. Protease inhibitors do not work the same in all patients. For some patients, viral load increases dramatically within three to four weeks, says Wohlfeiler. The drugs also do not prevent opportunistic infection. Patients who choose to take the protease inhibitors must agree to a strict regimen and may experience severe side effects, says Gibbons. If a patient does not comply, the body can quickly develop mutant genes and the patient’s immune system will be multiply drug-resistant, she warns.
Nurse management must be prepared to monitor patient compliance closely, which indicates more home visits. Physicians must spend the necessary time discussing potential benefits and risks with the patient, say Reiter and Wohlfeiler. "Try to size up each patient’s situation individually," suggests Reiter. "Make sure you do some reality counseling," Wohlfeiler adds.
4. Psychosocial support. If a patient has already failed to respond to other antiretroviral therapy, protease inhibitors are equally unlikely to be tolerated, says Reiter. Be prepared to help the patient deal with this situation, he urges. "These drugs are giving patients incredible expectations," says Wohlfeiler. "Be particularly attuned to addressing psychosocial problems that were never anticipated." These include grief, as well as survivor and non-survivor guilt and depression, he says.
On the other hand, if the protease inhibitor treatment works, the patient may be faced with a number of other issues. How will he or she manage financially? How will the patient get a job? Reiter urges hospice managers to assist these patients by developing a strong integrated network with local social service agencies.
These professionals maintain that the key to managing AIDS patients in today’s environment is to treat each patient and each situation on an individual basis. "Tailor the patient’s care on what they need. Be honest with them if you do not think the drugs will work or your hospice cannot afford them," says Alexander.
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