"As my colleague, Michael Kearney, said while we were students together in England in the 1970s, ‘The dying are medicine’s poor. They need the most and get the least.’”Institution
--Michael H. Levy, MD, PhD
Supportive Oncology Program
In fiscal 2000, the Palliative Care Service (PCS) saw 187 patients. Average daily census was 15. The PCS made 3,900 home visits.
The Pain Management Center (PMC) sees approximately 500 cases per year (in- and outpatient). 30% of these cases are transferred to the PCS.Director
Program Mission and Objectives
Palliative Care Service: To provide patients at the end of life with the same high quality care that they receive while their disease is still being treated.
Pain Management Center: To optimize the comfort and function of cancer patients regardless of prognosis.Program Description
The PCS has been Medicare-certified, state-licensed and JCAHO-approved to provide hospice/palliative care for at least 15 years. Palliative care is provided at home (94%), in nursing homes (5%), and in the cancer center’s inpatient area (1%). Approximately 45% of care provided by the PMC is inpatient and 55% outpatient.
Michael Levy, MD, PhD, has observed that most physicians think palliative care is appropriate only for the dying and that pain management is for people who are still fighting their disease. In fact, about one third of the patients seen by the Fox Chase Pain Management Center are in long-term remission or are cured but have painful nerve damage from their treatment. If patients are not clearly terminal, they go into the Pain Management Center and are transferred to the Palliative Care Service if appropriate at a later point. If patients live more than an hour away, they are referred to a local hospice.
In addition to Levy as its medical director, the PCS has a full-time nurse director, three registered nurses, one social worker, a chaplain, two home health aides, two administrative assistants, a part-time nurse, a part-time aide and volunteers. The Pain Management Center is staffed by Levy, who is the director, plus a clinical manager, two registered nurses, and a part-time social worker and secretary-receptionist. The hospital pays half the salary of a full-time hospice liaison nurse who acts as a case manager for terminally ill patients coming into the PCS from the PMC or being transferred to community hospice care.Historical Perspective
In 1979-1980, a Fox Chase nurse and social worker realized that the cancer center needed to take a close look at hospice; the seeds of the Palliative Care Service were sown. They captured the attention of a Fox Chase vice president who hired a Wharton Business School consultant to do a feasibility study. The study revealed that 25% of Fox Chase patients at that time were receiving palliative care only—that is, no anti-cancer care. The study concluded that if more palliative care were done at home, beds would be opened up for surgical patients and research subjects who, in the reimbursement structure, would garner more profit for the cancer center.
As a result of the study, Levy was hired as PCS medical director in 1981. After a year of planning, he launched the PCS as a two-year pilot project. He credits his effectiveness in large part to the director of social work and director of nursing, both of whom were champions on the front lines, who perceived the need for palliative care, yet knew they could not provide that care without help.
In addition, Levy believes these programs work because they improve not only the quality of life of patients but also that of Fox Chase physicians. The PCS and PMC staffs often help physicians with emotional decisions and routinely relieve them of difficult aspects of patient care.
Obstacles to palliative care at Fox Chase include the physicians’ perception of death as a failure, the fact that palliative care is not revenue positive, and the fact that Fox Chase patients are younger than in the past and are typically in a “rescue mode.”
Levy points out that more people would probably go into hospice if the cancer center were not there. Thus, it is especially important to have palliative care for these patients because by the time they get to Fox Chase, they are very ill and often do not have a lot of time to settle their affairs.
The Pain Management Center sees up to 20% of the cancer center’s inpatients on any given day. The program has evolved to help with post-surgical pain and thus facilitate treatment. For example, when a patient cannot get on and off the radiation table because of arthritis pain, he or she may not follow-up with cancer treatment. The rheumatologist may not prescribe any pain medication to facilitate cancer treatment, but the PMC will.Research
For more than a decade, the PCS has conducted a three-day hospice nursing training program in collaboration with the department of nursing. The program serves as an orientation for new hires in area programs and also attracts participants from nearby states. About 50 to 60 nurses attend the twice-yearly program. The PCS and PMC also participate in other nursing courses in end-of-life care and pain management. Levy and the PCS director, Susan Seeber, RN, give 30 to 50 lectures a year nationwide.
Local graduate schools send masters-level students in social work, pharmacy and nursing to the PCS for observorships. Palliative care is also a “mandatory elective” for first-year oncology fellows. Medical students and residents spend blocks of time in palliative care or pain management; students also can do their senior project in palliative care.
Within the community, the Palliative Care Service team makes presentations to civic associations, church groups and hospital auxiliaries.Partnerships
Neither the PCS nor the PMC do any marketing at this time.
Patient revenues cover staffing costs, but the PCS and PMC do not cover their indirect costs. The programs receive about $20,000 to $30,000 per year in gifts. The department of medicine covers Levy’s salary.
Michael Levy’s vision is to merge the Palliative Care Service and Pain Management Center and thus “close some gaps in the seams of care.” He wants to build staffing in order to offer more inpatient palliative care. He also wants to concentrate more on research and education. With another physician to help him see routine pain and palliative care patients, he would be able to focus more on breaking the next barrier.
Levy also would like to see a change in the way hospice is offered to patients: “I have a problem when the physician says, ‘Well, your tumor has progressed through standard treatment. I can offer you experimental treatment or just hospice’ or when the physician says ‘I’ll give you more therapy if you get stronger.’ But the patient never gets stronger, doesn’t get any more therapy and doesn’t get hospice either.”A National Perspective
Levy also views positioning from another perspective: It is a challenge to get people to come to a cancer center for preventive care when they are well, because they perceive the center as a place where only sick people go. But when good cancer care is followed by good palliative care and good bereavement care, the family has a positive experience and is more likely to return to the cancer center for their own disease prevention and risk management. Thus, palliative care and pain management can be viewed as helping to complete the healthcare loop by pulling people into preventive care. In addition, counseling people at high risk for certain cancers can be viewed as upstream palliative care.
Oncologists must view cancer as a chronic disease for which they provide state-of-the-art care to patients and families from diagnosis to the end of life. Levy believes that even the protocol language used to talk about cancer must change from statements like, “the patient failed in treatment,” to, “the tumor progressed despite standard therapy.”
In addition, the perception of death as a failure of oncological care must be changed. Palliative care is the right thing to do when further therapy is not appropriate, effective or desired. But many physicians do not see palliative care as helping the patient; they don’t see finishing life’s work as an honest therapeutic outcome. Levy maintains that palliative care—symptom management and care of the family— must be viewed as a therapeutic intervention in its own right so that it is always offered as an option along with standard care and experimental care. Right now, the system is set up for “one more chemotherapy treatment” because physicians think that is the only way they can offer hope—and it is easier than actually talking to patients about the future. Palliative care should be just as valid and just as easy to get as chemotherapy and should be offered in a nonprognosis manner at the time of diagnosis.
In addition to the changes needed in the system, Levy notes that Americans need to come to grips with the fact that they are in fact going to die.What I Wish I’d Known Then . . .
“Hospice was the only healthcare expansion during the Reagan era. To get the hospice benefit, we had to sell some of our soul and promise we’d save the government money. Our response to inadequate funding has been to overachieve. Every hospice clinician does it, and the result is that the need for more resources becomes less obvious. We didn’t professionalize what we do early enough. Less than 10% of hospice physicians are full-time and the system still relies heavily on volunteers. Can you imagine how far oncology would advance if it relied so heavily on volunteers?”
—Michael H. Levy, MD, PhD
This descriptive summary is based on an interview conducted by Jane Grant Tougas with project staff in spring 2001.
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