New concepts of palliative care sweep through hospital industry
Hospices must find ways to relate, collaborate
One of the enduring lessons from SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) was its inescapable documentation of the failings of hospital-based end-of-life care.
SUPPORT highlighted the urgency to find better ways of caring for the patients who die in the hospital setting. A growing number of medical centers nationwide are now confronting this challenge by developing inpatient palliative care units, services, programs, or consulting teams. Generally, such programs target the patients who don’t get referred to hospice. Some hospices, however, view them as threats or potential competition while others are doing everything in their power to collaborate, consult, share expertise, or encourage these programs to serve as bridges or transitions into hospice care.
"Palliative care programs are now everywhere," observes Ira Byock, MD, program director of the Princeton, NJ-based Robert Wood Johnson Foundation’s new $12 million initiative Promoting Excellence in End-of-Life Care, based in Missoula, MT. Byock is reviewing hundreds of application letters from new and would-be palliative care programs seeking funding from the foundation. "From my perspective, hospice is not driven by an organizational structure but by a set of values related to quality of care and orientation to the patient and family. We need to reflect best practices of hospice into other settings, including these new palliative care programs," he adds.
Palliative care refers to a medical focus on the seriously ill patient’s physical and emotional comfort. The term has been used interchangeably with hospice in Great Britain and Canada, where palliative medicine is an established subspecialty. Generally, palliative care is defined in terms of symptom management at the end of life, but patients with serious or progressive illnesses often need specialized attention to their symptoms even before they are diagnosed as terminally ill.
The preeminent palliative care program in this country was founded in 1987 at the Cleveland Clinic medical center by Declan Walsh, MD. Its components include palliative consultation, a 23-bed inpatient unit, outpatient palliative care clinics, palliative home care, and education and research programs. A certified hospice was added in 1991, and today the comprehensive palliative care service receives a thousand referrals a year. "Hospice is an important piece of what we do but doesn’t define the program," Walsh says. "We want to be part of modern cancer care and bring palliative care into the mainstream."
At Oregon Health Sciences University (OHSU) in Portland, a proposal for a medical center Comfort Care Team was drafted in the spring of 1994 and approved by the hospital’s administration that November shortly after the passage of Ballot Measure 16 made Oregon the first state to legalize physician-assisted suicide. The Comfort Care Team began operation in March 1995 and now consults on about 70 cases a year, says its director, Paul B. Bascom, MD.
Either Bascom or the team’s nurse performs primary assessments on referred patients, focusing on physical pain and symptom management, psychosocial and spiritual needs, and treatment decision-making issues. Other members of the team pharmacists, social workers, chaplains, and medical specialists are brought in as needed. The program is designed to "provide the same kind of comprehensive multidisciplinary care directed primarily at symptom management, as in hospice, and to make it available to inpatients as well," says Bascom, who is also medical director of Portland’s Legacy VNA Hospice.
The palliative care team consults with any seriously ill patient who has a need for comfort care, Bascom says. "Frequently, palliative care teams don’t have to work within hospice’s constraints and can take patients still getting active treatment. This allows these patients to get some measure of skillful attention to symptom management and also provides an avenue to begin discussing the transition to hospice." The OHSU program also provides comfort measures for hospitalized patients who are in the final few days of life and can’t go home and has even found a role for patients who have chronic nonterminal pain conditions.
The program "functions out of the generosity of the hospital administration," Bascom adds. "Part of my fee, I’m able to bill as a medical consultant." Other team members have other job responsibilities, with part of their time dedicated to Comfort Care. This works out well, "because the nature of the care is quite episodic intense involvement for a couple of days and then quiet."
Is this trend good for hospice?
John J. Mahoney, president of the National Hospice Organization in Arlington, VA, sees a lot of smoke in the current national focus on palliative care. "How much heat and light there are, I don’t know. In some respects, there is reason for optimism. If you look at the SUPPORT study, it told us a lot about how people were being cared for in hospitals," he says.
"As hospices, and as a national organization, we need to see our role as advocating for better care of the dying regardless of setting and to the extent these palliative care programs involve improving care for patients who would not be able to die any place else but in the hospital, we need to be supportive. There could also be opportunities for hospices to become involved in creating or delivering those services," Mahoney adds. "But if these programs exist to create another revenue stream without changing patient care, or if they become duplicative or competitive, nobody is served by that and we shouldn’t support it."
"I’d see the development of palliative care programs as good news for hospices, identifying that these issues are important in the health care system, raising consciousness about end-of-life care and making the system deliver care on a more rational basis," Walsh asserts.
"When you try to convey to people focused narrowly on hospice how the broader model works, the real issue is whether they can buy into the idea that palliative care should be offered to a much broader population" than hospice now serves, says Russell Portenoy, MD. Portenoy is medical director of the new Department of Palliative Medicine and Pain Management at Beth Israel Medical Center in New York City.
Beth Israel’s new palliative care model, integrating hospice into a broader continuum, was launched in September. Portenoy, a prominent cancer pain expert formerly at Memorial Sloan Kettering Medical Center, also in New York City, describes this new program as "the country’s first hospital department of pain medicine and palliative care," comprised of the following:
- a pain division targeting nonmalignant chronic pain;
- an institute for education and research in palliative care;
- a palliative care division.
The latter incorporates the hospital’s preexisting Jacob Perlow Hospice, an 18-bed pain and palliative care unit, an inpatient palliative care consulting service, an ambulatory (clinic-based) program, and supportive care for patients living at home who need medical management of their symptoms but aren’t yet appropriate for hospice. "If patients decertify or revoke from the Medicare hospice benefit, they could still receive palliative care services and access to specialists," says Portenoy.
"In the model being created, hospice is a very important, fundamental part of a broader program of inpatient and ambulatory services. The model recognizes that palliative care is not just end-of-life care, although it intensifies during the end of life. Palliative care can also exist throughout the trajectory of progressive illness, and some patients require it all along the way," he explains.
"Beth Israel has decided to its enormous credit to take this visionary step and to say, We think this will be such an important area that we want to establish it as a department co-equal with medicine and surgery.’ Beth Israel’s administrators have long had an interest in quality of life, including end-of-life care. They’ve been extremely proud of Jacob Perlow Hospice, which they see as a jewel in their crown. But they also recognize that their patient population overall has not had optimal pain management, and the number of patients using hospice has been limited. They think hospice is a start but not an end-all."
An awkward relationship with hospice?
It is curious to note how the palliative care services offered by Beth Israel seem to be defined in terms of hospice who qualifies for hospice or not, what patients need before they get into hospice, and what happens to patients if they are discharged from hospice. There seems to be an awkwardness in how palliative care must work around the hospice benefit’s structural, regulatory, and cultural limitations even with a celebrated program such as Jacob Perlow Hospice.
"I view [the issue] not so much as awkwardness but as a limitation in hospice a deficiency or a problem in how it is structured," Portenoy responds. "The current hospice benefit structure represents an uncomfortable balance between the desire to offer excellent medical care and comprehensive support for a very needy population, while at the same time creating a system that is manageable economically and targets the right patients," he says. "The awkwardness lies in being constrained by hospice’s limitations while trying to fix what we could fix."
These limitations include the six-month prognosis requirement, the need for patients to waive curative therapies, ever shorter lengths of stay on the hospice benefit, and limited patient access to expert medical care at the end of life, Portenoy says. "You could be on hospice for the entire period of time before death and never see a physician with expertise in terminal or palliative care. For some patients, that’s not a problem, but for others, it definitely is."
Walsh goes even further, adding that "the Medicare hospice benefit as currently constructed should be disassembled, and we should start over again. I believe the net effect of the Medicare benefit has been bad for hospice and bad for patients," even though it supported the creation of many new hospice programs.
"The Medicare hospice benefit was a very artificial construct, in my opinion, and in a sense, people have had to dance around that construct ever since," Walsh says. "Hospices are asked to assume a burden and to make decisions that do not match the aspirations of good hospice care." Many people have benefitted from hospice care, he adds, but not as much as they could have or for as long as they needed. And even more have never reached hospice.
"I don’t want to put down the work people do in hospice the problem is intrinsic in the way the benefit is administered, which contradicts good hospice care," Walsh explains. "From my perspective, the continuity of care, continuity of philosophy, and ease of communication within an integrated program such as ours are light years from what happens in a community hospice, where they sometimes can’t even get the attending physician to return their calls."
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