Name of Project: The Renal Palliative Care Initiative
Institution: Baystate Medical Center, Springfield, MA
PI: Lewis M. Cohen, MD
Abstract (as described by Project staff)
The Renal Palliative Care Initiative (RPCI) integrates palliative care into the dialysis setting, and a team of interdisciplinary staff has undergone a didactic program to facilitate this integration. Eight clinics in the Connecticut River Valley Region of New England are involved, and they have instituted symptom assessment and treatment protocols, morbidity and mortality conferences to review patient deaths, and bereavement programs, including annual memorial services.
Brief Synopsis of Program Characteristics, Successes and Challenges
Twenty percent of renal dialysis patients die each year. Thus, it is somewhat surprising that RPCI is the first program in the country to integrate palliative medicine into the care of patients whose lives are being prolonged with maintenance dialysis. RPCI represents the cutting edge of palliative care in this arena.
The staff has written the following regarding normal care for dialysis patients:
"No systematic attention to symptoms is available at other dialysis facilities. Advance care planning is rarely performed, and it is highly unusual for staff to routinely learn about the terminal care circumstances of their patients. Most contact between families and staff ceases with patient deaths, and the memorial service is almost unique in its attempt to restore contact."
RPCI staff notes, however, "Timing has been fortuitous, in that the specialty of nephrology has become more interested in these matters."
RPCI is literally changing the culture of dialysis delivery through formal symptom assessment during dialysis rounds, memorial services and normalizing this type of care by including it in the morbidity and mortality meetings. Assessment tools are used to track common dialysis symptoms, quality of life and quality of dying in the Baystate inpatient renal unit and eight freestanding dialysis clinics. Berkshire Medical Center serves as a control clinic. These clinics are owned by Fresenius and directed by the Western New England Renal and Transplant Associates (WNERTA). Other participating organizations include Genesis Elder Care (not involved this current year), ESRD Network of New England, several local chapters of the National Kidney Foundation and various community hospitals.
The project began in 1998 after an interdisciplinary team of clinician researchers conducted a decade-long series of studies investigating end-of-life issues of patients with end-stage renal disease.
Seven of the dialysis staff (nephrologists, nurses, and social workers) at the clinics have been trained and institute and direct the palliative care efforts. Depending on the clinic, patients complete symptom assessment questionnaires as frequently as weekly, and all of the clinicians can access individual symptom treatment protocols at the clinic nursing station in order to manage their complaints.
Patients who begin treatment at any of the clinics receive a Renal Palliative Care Initiative brochure and are informed that RPCI is part of the treatment system. Patients receive care in a number of settings, including outpatient dialysis clinics, hospitals (other than Baystate), nursing homes and at home. Project staff encourage patients with their families to complete the Five Wishes advance care planning tool, and have produced an educational video for staff and patients that discusses the value of a health care proxy. The project holds an annual memorial service for families who have lost a loved one in the past year. The staff note that the service "gives family and friends the chance to celebrate the life of their loved one, as well as an opportunity for dialysis staff to grieve in an appropriate setting away from the unit." In addition, in one setting, patients and staff are alerted of a new death with a rose and a note in a prominent location, such as the nurse's station.
After each patient death, a post death questionnaire is sent to the family to complete. The completed questionnaire, along with clinical information abstracted from clinic, hospital, and nursing home charts are presented to the clinicians at Morbidity & Mortality meetings. All families receive contact from the social workers and receive an invitation to attend the memorial service.
The RPCI hired a data collector who is fluent in Spanish after finding that a significant portion of the patients communicated in Spanish. Staff turnover has been remarkably low. The project is also actively discussing the formation of a volunteer or peer counselor program and will likely create this with the assistance of the RWJF Faith in Action program.
The project also had available tools to measure its progress - all tools were modified or developed by the project team. Existing tools were not relevant to ESRD.
Exportable Products/Tools
Through the initiative, several palliative care tools have been developed at Baystate for dialysis patients, including:
Policy Issues
Dialysis companies do not honor advance directives.
Communications
This is an active group in the area of dissemination. They have had numerous successes in the academic arena (publications and presentations) and some limited success in local publicity efforts. Baystate has received a communications grant to produce a manual and video of the bereavement services. Information on the project resides on the Baystate Web site and can be accessed on this page: http://www.baystatehealth.com/1025/3840/4221/4227/AlphaSights/984779746.html
Generalizing the Model
The project notes that they have found a ready audience for even the project's preliminary findings in both the national and international nephrology community. The staff training and inclusion of palliative care in the everyday operations of the dialysis clinics is very replicable as dialysis centers throughout the United States are similar in operation and are owned by a relatively small number of companies.
Project staff notes that the project experience has been particularly helpful in shaping textbook chapters- at least four of which have been completed during the last two years. The project is hopeful that the interventions will now serve as the basis of more scientifically rigorous research studies and ultimately wide dissemination and implementation of the model.
Through the communications grant, the project staff plans to train others to conduct memorial services for ESRD patients.
During the conference call, we should explore and better understand how this project can be generalized to other Fresenius and dialysis centers.
This group has also been very active in the Promoting Excellence ESRD Workgroup, sharing information and taking part in focus groups, survey research and general discussion about how to move this field forward for ESRD patients.
Words of Wisdom from the Project
The project states that others starting a similar program should budget for an interpreter.
Promoting Excellence in End-of-Life Care is a national program of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.