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Baystate Medical Center
The Renal Palliative Care Initiative (RPCI) was developed among eight dialysis clinics and Baystate Medical Center, with the cooperation of a large nephrology practice. Physicians, nurses and social workers formed a core group that became educated in techniques of palliative care, developed specific programs of care and helped introduce them into the routines of dialysis patient care in the hospital and dialysis units. Programs for support of bereaved families also became a part of the effort.
The RCPI developed strategies to address the needs of patients, families and the care team as they confront the challenges of renal disease, dialysis and transplantation and the inevitability of eventual death, even while continuing with renal replacement therapies.
Because patients receiving dialysis often have other serious illnesses, such as diabetes and heart or cerebrovascular disease, the annual death rate among dialysis patients can be as high as 25 percent. This three-year initiative provided palliative care that addressed patients' comfort, as well as emotional, social and spiritual well-being, in addition to state-of-the-art nephrology care. It also studied the project's effects on the patients' quality of life and their medical choices.
Under the direction of Lewis M. Cohen, M.D., a unique collaborative of families, doctors, nurses and social workers made critical decisions concerning the patient's end-of-life care. In the process, they developed a set of protocols for joint-care planning that includes palliative care and ethical decision-making, and offers support to patients who wish to consider if or when to stop life-extending dialysis.
Once the symptom assessment tools and protocols (see below) were developed, the core team members instructed the rounding nephrologists, nurse practitioners and nurses in the use of these instruments as they made their bi-weekly visits with patients undergoing dialysis treatments.
Institution of a formal Morbidity and Mortality review process was designed to incorporate a focus on issues relevant to palliative and end-of-life care in the review of deaths occurring among dialysis patients. It was designed to fit within the existing framework of monthly team meetings in the dialysis units at which patient care and other issues relevant to quality improvement we're routinely discussed by the entire team (nephrologists, nurse practitioners, registered nurses, and dialysis care technicians, social workers and dieticians).
The project staff employed a data collector to conduct chart reviews in the dialysis units, hospitals and nursing homes. This provided details of a patient’s clinical course leading up to death, and allowed a physician reviewer to score the characteristics of the death including: domains of pain and other symptoms; level of advanced care planning; involvement of family and other support system; duration of dying; and overall character, whether “dignified and peaceful,” or “stressful and chaotic,” of the dying process. These findings were then available for presentation at the monthly interdisciplinary team meetings. It was hoped that review of adverse outcomes in this educational and quality improvement context would increase the staff’s awareness of deficiencies and provide continuing education.
A post death questionnaire was sent to families approximately six weeks after the death. Pertinent data from these surveys was made available for review during Morbidity and Mortality meetings.
Partners addressing this serious need included Western New England Renal and Transplant Associates and the VNA and Hospice of Western New England.
After the Grant
Sustained through adoption of policies and practices into routine care; additional grants have been secured to continue affiliated research.
Promoting Excellence in End-of-Life Care was 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.