Several National Cancer Institute-designated Comprehensive Cancer Centers received grants to test the simultaneous provision of active cancer treatment and supportive palliative care. The projects aimed to offer care consistent with cancer patients’ actual needs and desires. Each sought to overcome the health policy-imposed dichotomy that currently requires patients to give up cancer treatment in order to receive palliative care directed toward improving comfort and quality of life.
The University of Michigan Comprehensive Cancer Center in Ann Arbor and Ireland Cancer Center in Cleveland, Ohio tested models of concurrent care, introducing palliative care and attention to comfort and quality of life "upstream" in the disease trajectory. Both projects were built on close collaboration between the cancer center and a leading hospice program. Both achieved strikingly hopeful results, demonstrating that improved access to palliative services and responsiveness to patient preference and comfort needs can be achieved cost-effectively—with at least budget neutrality—while measurably improving quality of care. At this point, data are still being analyzed and the projects can only report trends from their experience. But those trends are strongly encouraging.
The Role of Palliative Care Coordinator
The University of Michigan Comprehensive Cancer Center project combined the services of a hospice team from Hospice of Michigan with a new role called Palliative Care Coordinator for cancer patients receiving anticancer treatment—including experimental Phase I-III cancer clinical trials. The model was tested through a rigorous, randomized controlled trial of conventional oncology care alone (control group) or in combination with the provision of hospice and palliative care coordination (intervention group). Intervention patients were immediately enrolled in hospice, while anti-cancer treatments, usually excluded from hospice care by Medicare regulations, continued.
The Palliative Care Coordinator’s pivotal role enabled the project to blend essential elements of hospice care with cutting-edge cancer treatment. Functioning as communicator, educator, advocate, and integrator, the Palliative Care Coordinator was the “glue” that connected patients and families with clinical components of the project, making sure that the patients’ needs and values were clearly reflected in the difficult treatment decisions they faced.
The Palliative Care Coordinator accompanied the patient to the doctor’s office, made home visits, at times even meeting a patient in a restaurant or café, while maintaining persistent telephonic outreach. The goal was to guide patients and families through the health system’s complexities. Although palliative services were directed at improving comfort and quality of life, the additional attention to communication, symptom control and the provision of emotional support enabled some patients to continue their experimental treatments longer than they otherwise might have done. For others, the expertise and time devoted to clarifying their values and preferences allowed them to identify alternatives to hospital-based care and let go of ineffective treatments sooner.
The Promise and Problems of Hospice
“When I first entered the field of medical oncology, I thought, ‘There has to be a better way of caring for dying people,’” relates Dr. John Finn, Chief Medical Director of Hospice of Michigan’s Maggie Allesee Center for Quality of Life in Detroit. Finn’s search led him to a career in hospice care. Over the past 13 years he has witnessed considerable progress in advancing the science and art of end-of-life care.
Yet today, U.S. hospice programs are struggling to deliver state-of-the-art palliative care in the face of restrictive regulation, inadequate reimbursement, and precipitously short lengths of service. Additionally, the Medicare Hospice Benefit’s regulatory requirement to give up life-extending treatment, known as the “terrible choice,” has met with a cultural backlash against the hospice concept and its close association with death. Once again, Finn finds himself pondering: “There has to be a better way to care for dying patients.”
The hospice model of care was developed primarily with cancer patients in mind, at a time when an admission requirement of six months or less to live better reflected the realities of medical treatment. Cancer treatment has advanced dramatically over the past 20 years. Today, clinical prognoses often are not black or white; indeed, it is ever more difficult to know when treatment has become futile. Many patients who need—and may qualify for—palliative care see hospice as giving up hope. This is especially true if they inhabit a gray zone of knowing that their cancer is considered incurable yet wanting to fight for a long-shot cure—or even just a few more months of life.
“To me, hospice is an elegant, high-quality, cost-effective delivery model that should be provided throughout all of health care,” says Hospice of Michigan’s CEO, Dottie Deremo. “Our challenge is that hospice, too often, is perceived as ‘selling death.’ Nobody wants to admit they are dying. These services are needed much earlier in the course of a chronic illness, without getting caught in artificial barriers of curative treatment versus supportive care,” she says.
“Could we provide what patients want and need, have it look and taste like hospice, and call it palliative care, transition services or comfort care?” Deremo wonders. “If we relieve suffering at the same time that patients are receiving active cancer treatment, my firm belief is that it will be more cost-effective in total. Our palliative care study may be too small to prove that definitively, but it will give us some important indicators.”
Adds the project’s principal investigator, Dr. Kenneth Pienta of the University of Michigan Comprehensive Cancer Center, “We had a vision that we would bring hospice care into cancer patients’ lives sooner, and that the extra support would improve their quality of life.” The project has demonstrated that this can be achieved without generating net expense for the system.
Positive Preliminary Results
Michigan’s Palliative Care Program is perhaps the first scientifically rigorous, randomly controlled Phase III clinical trial to examine the value of comprehensive palliative care. Analysis of data is still underway but preliminary results are starting to shed light on key issues in cancer care. The controlled trial enrolled 160 patients (81 control; 79 intervention). Accruals ended December 31, 2001, with a number of patients currently under treatment. Data from the first 55 patients who died, although too small to yield statistically definitive findings, provide an early glimpse at results in progress. Caregiver burden and patient quality-of-life measures are already showing positive results.
Another striking preliminary finding is that the "period of observation" from enrollment to death was actually longer for the intervention group (266 days) than for the control group (227 days). While that 39-day difference also is not statistically significant because of the small number of subjects, the data are provocative in suggesting that the patients receiving palliative care through hospice actually lived longer than the control group.
Reflecting the challenges that have confronted other researchers who study the costs of end-of-life care, the Palliative Care Program struggled with numerous issues in trying to identify and allocate costs for the control and intervention groups within a fragmented health care system. Comprehensive cost analysis would need to include direct as well as indirect, societal, and out-of-pocket expenses, including lost workdays and stress-related health care costs incurred by family caregivers. Allocating the true costs of hospice care within the context of this study is another challenge, along with the cost of providing the overlay of the Palliative Care Coordinator.
With all of these caveats, the Palliative Care Program has begun to generate suggestive preliminary cost data. Early analysis of total Medicare-incurred costs (excluding prescription drugs) for the 55 decedents (30 control, 25 intervention) show total Medicare costs per patient for the intervention group of $12,682 versus $19,740 per patient for the control group, a net difference of $7,058 per patient, adjusted for a mean enrollment duration of 250 days. The biggest difference between the two groups was for hospital care (intervention: $8,974; control: $13,126).
Final analysis, factoring in other components of total costs, has not yet been completed. Expenses on both sides of the ledger still need to be incorporated into the final cost comparison. The researchers suggest, based on current indications, that when complete, overall cost difference between intervention and control may be negligible. If so, the project will have achieved cost neutrality while improving quality of care and quality of life—and possibly length of life—for patients along with diminished burden for caregivers.
Project partner Hospice of Michigan lost money providing services to intervention patients under the project, in part because of their greater drug costs per person, compared with usual hospice patients. Facing potential deficits in two of the past four years, the agency struggled to fulfill its commitment to absorb uncovered costs of the project and to communicate to staff why it was important—despite the financial challenges —but held firm to its commitment.
While celebrating the research project’s success, Hospice of Michigan will not be able to sustain the clinical program unless there is a change in reimbursement structures to accommodate the earlier provision of palliative care in this setting. Ironically, uncompensated expenses are necessitating the end of this experiment, even though the provision of hospice and palliative care may represent cost savings for Medicare by reducing hospital utilization.
Providing Safe Conduct
Similar results are emerging from PROJECT SAFE CONDUCT (PSC) in Cleveland, Ohio, winner of the 2002 Circle of Life Award from the American Hospital Association. Project partners, Ireland Cancer Center and Hospice of the Western Reserve, successfully integrated a hospice team into oncology treatment provided by specialists at the cancer center for patients with advanced lung cancer. The project promoted an integrated, concurrent care model for these patients and their families, supplementing and enhancing traditional cancer care with all of the dimensions of hospice, focused on comfort and quality of life.
Hospital Admission Rates
Rather than trying to build a bridge between the cancer center and hospice, the project merged the two approaches by bringing hospice inside the cancer center’s walls. A Safe Conduct Team comprised of a nurse practitioner, social worker and spiritual counselor from Hospice of the Western Reserve was based at Ireland Cancer Center and carefully integrated into its normal operations. Research compared outcomes among patients receiving support from the Safe Conduct Team with those of a similar group of lung cancer patients seen at the center in the year before the project began. Among the key results emerging from preliminary data:
“Cost was never part of our specific aims. This was not a cost-benefit study,” relates Ireland Cancer Center vice president Meri Armour, MSN. “Everyone says that, of course, it makes sense that palliative care could control costs.” But in the current environment, it costs Ireland money to operate the program—even though palliative care potentially prevents emergency room visits and unplanned hospitalizations.
“I think we’re making the case that hospice care should be extended across a greater time frame because the needs we’re seeing here are very real. Patients and families are in great need of these services —there has to be a way to get their needs attended to,” Armour says. “We have learned that palliative care is just good cancer care. We’re continuing Project Safe Conduct at Ireland because, once you look at the data, you just can’t take these services away. However, unless reimbursement changes, it could be a pretty hard sell to other academic hospitals.”
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