“I think it’s a privilege to relieve suffering and help families survive the death of a loved one. You bring what you know to the patient and family for their unique needs, not just for the disease. I love the team work.” --Janet Abrahm, MD
Institution: Dana-Farber Cancer Institute, Boston, Massachusetts
Program: Pain and Palliative Care Program
Year Started: 2001
Patients Seen: No data yet
Project Director: Janet Abrahm, MD; 617-632-6839; [email protected]
Program Mission and Objectives
To improve the quality of life of cancer patients through the provision of comprehensive, coordinated, interdisciplinary care across all treatment settings and during all phases of illness. While palliative care needs will escalate as patients approach death, palliative care for cancer patients begins at diagnosis. Therefore, Dana-Farber Cancer Institute (DFCI) will offer a mixed management model that offers palliative care alongside cancer care. The program will provide:
In addition to the provision of clinical care, the palliative care program will work more broadly to improve the care of patients living with life-threatening disease through:
The Pain and Palliative Care Program is based on the notion that cancer and hematology patients at DFCI deserve the best care possible. Janet Abrahm, MD, sees her program as a “value added” service that enhances the patient–oncologist relationship.
Patients are seen anywhere in the course of their illness. The program serves patients wherever they are: as DFCI outpatients; at Brigham and Women’s Hospital (BWH), the hospital serving the center; or at home. Eventually, the program will include another team for non-cancer patients admitted to the BWH.
Nurses, doctors or social workers identify eligible patients. Abrahm hopes to identify patients via teaching rounds as well. The nurse practitioner on the team triages all referrals. Full-time personnel on the palliative care team include the nurse practitioner, director, an administrator and a program assistant. The part-time personnel include a clinical pharmacist, social worker, chaplain and community coordinator. Care is not limited to these disciplines, however; all of DFCI’s therapies and support systems are available to patients.
Dana-Farber senior oncologists who were concerned with the quality of end-of-life care provided to their patients recruited Susan Block, MD, as chief of the psychosocial oncology division at DFCI. Block proposed development of the Pain and Palliative Care Program as part of the Psychosocial Oncology Program and wrote a strategic plan for the initiative. DFCI then sought a senior medical oncologist with expertise in pain and palliative medicine to head the program. Janet Abrahm, MD, filled that role.
To elicit program support, program champions—Block and other members of the palliative care planning group—conducted focus groups, patient surveys, hospice surveys, epidemiologic data collection and chart reviews, including a review of bone marrow transplantation deaths. They provided feedback to DFCI administration concerning the current status of end-of-life care. As a result, DFCI senior administrators committed to developing and funding the Pain and Palliative Care Program. Block and other members of the planning group involved senior leaders at BWH, where all DFCI patients are admitted, in the development of palliative care clinical services for non-oncology patients.
From the beginning, space and money were significant barriers, but institutional commitment to program development was unwavering. DFCI leaders found space for a start-up program and identified discretionary monies, educational grants and bequests made to DFCI doctors for funding. Yet another barrier was the lack of people appropriate for the position eventually filled by Abrahm. The job called for an academic oncologist, experienced in palliative care and qualified for an appointment at Harvard.
The only philosophical objections to the program came from previous DFCI leaders who supported a more curative model. When the program was introduced to the entire DFCI staff, it met with enthusiastic applause.
DFCI’s Psychosocial Oncology Program already had major ongoing clinical care responsibilities for patients at the end of life as well as national research and educational activities in palliative care. Locating the Pain and Palliative Care Program with the Psychosocial Oncology Program allowed development of a critical mass of personnel with a common vision and supports interdisciplinary collaboration.
The program is collecting data on variables such as outcomes and length of stay and will participate in ongoing research by the Psychosocial Oncology Division.
Janet Abrahm devotes one-third of her time to education. She teaches residents and oncology and anesthesia pain fellows at BWH and is a faculty member for the Program in Palliative Care Education and Practice, a national faculty development program funded by The Robert Wood Johnson Foundation. The Harvard Medical School Center for Palliative Care, of which she is a member, also sponsors a monthly seminar on palliative care. She is involved in teaching medical students in a semester-long course on Living with Life-Threatening Illness at Harvard Medical School and plans to conduct weekly palliative care rounds at both DFCI and BWH. The program also includes a monthly meeting of the Palliative Care Resource Nurses, a group of nurses from all the disease centers at DFCI.
The Pain and Palliative Care Program partners with Massachusetts General Hospital, Children’s Hospital and Brigham and Women’s Hospital. The program is also looking for home hospice and visiting nurse agency partners.
Eventually, the program will market internally.
The program is funded by patient care revenue, institutional support, grants and philanthropy.
Janet Abrahm sees the Pain and Palliative Care Program as a means of improving the quality of life of cancer patients at all stages of their illnesses and of achieving continuity of care. She envisions that all DFCI patients will have their distress issues recognized and will experience excellent, seamless management from diagnosis, to treatment, to death as patients, families and caregivers go back and forth across sites. She also wants to raise the palliative medicine educational level of clinicians at DFCI and BWH and is interested in collaborative research with nursing, spiritual support, pharmacy and social work.
This descriptive summary is based on an interview conducted by Jane Grant Tougas with project staff in January and February 2001.
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