"I do it for the patients. They shouldn’t have to focus on drug development or a good death. I know a lot more patients will die than live. When a patient has less than a year, it takes special skills to see him through.”Institution
--Michael A. Carducci, MD
Johns Hopkins Palliative Care Initiative
Planning started in 1996-1997. The lecture series started in 1998. The team started delivering services in June 1999.
To date, the program has seen approximately 200 oncology patients.
Senior Social Worker
Susan Blacker, LCSW-C
Program Mission and Objectives
To provide a program of active compassionate care primarily directed toward improving the quality of life for patients with life-threatening and terminal illnesses and providing support for their families. The goals of the program, which reflect the tripartite mission of the Johns Hopkins Medical Institutions are:
The program, which currently operates in the department of medicine, is based on a multidisciplinary, consultative model. The palliative care team is composed of a medical director, physician, nurse practitioners, social worker, chaplain and a child life specialist. Anyone may initiate a consult, but the attending physician typically approves the consult. If an attending physician vetoes a consult, the team will work with the patient’s nurse.
Depending on the patient’s needs, follow-up is done via outpatient clinics, home care services or hospice. Twice a week, the team reviews all inpatients and outpatients using the service. The team shares meeting outcomes with the primary providers.
The palliative care nurse assesses each patient and makes the appropriate referrals to others on the team. In addition to the nurse, most patients see the social worker and 20% to 30% see the pastoral counselor. Only about 20% of patients see the team physician. When necessary, team members work with physicians to rethink patient care goals and help them communicate with patients when continued treatment (e.g., feeding tubes, dialysis) is futile.Historical Perspective
The task force formed a steering committee chaired by Michael A. Carducci, MD, assistant professor of oncology and urology, and Nancy Hutton, MD, associate professor of pediatrics. In January 1998, the steering committee held a town meeting for employees interested in establishing a palliative care program at JHMI. More than 200 people attended, shared their stories of loss, and indicated their support for making improvements in pain and symptom management, meeting psychosocial and spiritual needs, and improving communications. The meeting also revealed that a number of end-of-life-related studies throughout the institution were seeking funding, but there was no central coordination for this research effort.
After the meeting, the steering committee formed four subcommittees—clinical care, education, research and ethics—to take a closer look at end-of-life issues. The steering committee and the education subcommittee are still active. The proposed palliative care program was announced in a broadcast email and in the Hopkins Medical News. In addition, steering committee members met with numerous institutional leaders and garnered support from physicians in oncology, medicine and pediatrics; high-level administration; the School of Nursing, the School of Public Health, the Bioethics Institute, the Home Care Group, and the Hopkins health plan—to name but a few. To this day, the steering committee continues what Carducci calls “shuttle diplomacy” with department chairs, deans and administrators.
JHMI planning and marketing staff helped the steering committee write a business plan, which called for seven FTEs, clinical care and research teams and more money than anyone had. Yet another challenge was the fact that the university was not structured to accommodate such a program. The committee rethought its approach and came up with a pilot program within the department of medicine—including ICU—focused on continuity of care, transitioning, communications and defining goals. The steering committee meets quarterly with hospital administration to review patient statistics.Research
The palliative care initiative provides formal and informal education—grand rounds, departmental morbidity and mortality conferences, and presentations at key departmental meetings.
Susan Blacker, LCSW-C, is chair of the steering committee’s education subcommittee. For several years, Johns Hopkins Oncology Center collaborated with the University of Maryland on a lecture series in palliative care for hospice workers, health care providers and university staff and faculty. This year Hopkins will present the program on its own and will make it more skill-focused and workshop-oriented.
Michael Carducci and his colleagues present six lectures yearly to house staff in medicine and five to six lectures for oncology fellows. They are also involved in the medical school’s “Physician and Society.” In addition, students have asked for a first- or second-year elective course in palliative care.
With a PDIA grant for continuing education for social workers, Blacker has organized two national conferences and has developed a network of social workers in end-of-life care. She is also project director for a national continuing education program in psychosocial cancer care.
The Oncology Center sponsors a Living with Cancer resource program for patients and families. The center’s Web page features a section on “What Is Palliative Care?” which is designed to support a March 15 broadcast on palliative care on Discovery Health.Partnerships
The program markets internally with brochures and contact information, face-to-face contact and inservices.
The program has not started to bill but anticipates that 5% to 10% of its support will come from patient revenue. Support to date has come from the institution and from Carducci’s “grateful patient” account.
After solidifying the core team, Carducci hopes to expand the program into the oncology department and into outpatient care. He is interested in the role occupational therapists and dietitians might play on the team. In addition, Carducci would like to expand the research, explore the role of hospitalists and build on the educational foundation the program has established.
Elements and Measures of Program Success
“I wish I had known how much time it would take to get institutional support. Also, I am more skilled now, less afraid to say ‘I think you are dying.’ ”
--Michael A Carducci, MD
“I came from a well-integrated palliative care system. It’s different to be in an academic center. I have learned that one model doesn’t fit all.”
--Susan Blacker, LCSW-C
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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