“I believe in our model. This will be my last contribution to the field. I believe I am providing a service, making a contribution, for my family, friends and community.”
--Jeanne Parzuchowski, RN, MS, OCN
Institution: University of Michigan, Comprehensive Cancer Center, Ann Arbor, Michigan
Program: Palliative Care Research Project
Year Started: 1999
Patients Seen: 114 in current phase of program
Director: Jeanne Parzuchowski, RN, MS, OCN, Vice President of Research, Hospice of Michigan; 313-578-5060; [email protected]
Program Mission and Objectives
To create a model of palliative care that integrates the best of cancer care and the best of end-of-life care.
The Palliative Care Research Project, a collaboration between the Comprehensive Cancer Center at the University of Michigan and the Hospice of Michigan, is designed to provide patients access to coordinated care across a range of clinical settings, and to provide both hospice care and aggressive cancer treatment. A primary physician screens patients for eligibility, which includes the patient’s decision to give up curative treatment but to continue cancer treatment therapies that control symptoms. Palliative care coordinators based at various sites coordinate the care for patients. From their base, coordinators follow “their” patients to any setting the patient needs to go for care—home, other clinics, etc. The coordinator liaises between two different teams: a hospice support team and the oncology staff. The hospice support team consists of “traditional” hospice staffing, ie a hospice nurse, social worker, spiritual counselor and others as necessary. The patient’s primary physician leads the oncology staff. The primary physician, patient and coordinator develop the plan of care.
The project is being conducted at a major cancer center, a VA hospital, community-based cancer centers, hospitals and private doctors’ offices. It is done in real time with reimbursement as it is in real life—no waivers. Patients are not transferred into end-of-life care; rather, end-of-life care is fully integrated into overall care. The palliative care programs are housed within the unique cultures and services of these institutions. All palliative care coordinators from the various clinical sites meet regularly in order to work through the logistics of the program and to learn new skills.
The project is a randomized trial now in its third year. Year one included 20 prostate cancer patients. Year two involved 33 prostate cancer patients. In year three, the project expanded to include 114 patients with advanced colon, breast, lung, pancreas, bladder and prostate cancers.
Because of the randomized nature of the research, Jeanne Parzuchowski, RN, MS, OCN believes she and her colleagues will be able to demonstrate definitively whether or not their model is superior to the current standard of end-of-life cancer care.
At the beginning of the project, Parzuchowski worked with clinician and researcher Kenneth Pienta, MD, at Wayne State University. Pienta later moved to the University of Michigan; Parzuchowski stayed at Wayne State where she is vice president of research for the Hospice of Michigan.
The Palliative Care Program first conducted two pilot studies. The first study measured quality of life. The data demonstrated that the program appeared to improve quality of life for terminally ill patients. Pilot data also suggested that the Palliative Care Program successfully integrated conventional care with hospice for patients with hormone refractory prostate cancer and had the potential to benefit patients with all types of terminal illnesses. Initial studies gave the Palliative Care Program high marks from patients and families.
The second pilot study measured whether the program was cost-effective. In this study patients with newly diagnosed, advanced, hormone refractory prostate cancer were offered enrollment in the Palliative Care Program as they were offered palliative chemotherapy. Patients who accepted this option were immediately enrolled in the hospice benefit. Hospice then monitored the patients’ care and paid all cancer related medical bills. Conventional care patients were followed and billed in a normal manner. The cost analysis demonstrated that overall cost to the health care system was similar between the two groups.
Doctors are invited to participate in the current study. Parzuchowski meets weekly with the nurse coordinators and field nurses. Data managers and co-investigators attend monthly meetings.
The palliative care coordinator, who is also the research nurse, administers tools to both intervention and control patients in order for the project to gain comparative data. Intervention patients are enrolled into the program and receive both hospice and aggressive cancer care for symptom control; control patients receive traditional oncology care only.
Jeanne Parzuchowski needed to bring hospice nurses up to speed in oncology and research. She developed a training manual for nurses and hospice workers who had never conducted research. She also trained all the field nurses and nurse coordinators so they could become certified in chemotherapy. Parzuchowski also developed a video about “delivering bad news” for doctors.
The research program collaborates with the University of Michigan’s Comprehensive Cancer Center and the Hospice of Michigan.
The program is funded by The Robert Wood Johnson Foundation. The Hospice of Michigan absorbs the cost of the hospice care that is provided to patients on this project.
Jeanne Parzuchowski feels that this model has the potential to change the regulatory environment.
A National Perspective
Elements / Measures of Program Success
Jeanne Parzuchowski feels that NCI should work with lobbying agencies to develop payment for appropriate palliative care because many patients are caught with making a decision that would leave their families with big bills.
What I Wish I’d Known Then . . .
“I underestimated how hard the project would be, how complex and multifaceted it would be to do it in real time.” --Jeanne Parzuchowski, RN, MS, OCN
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