Quality of Life Subgroup
(See Appendix B for a more complete discussion and products.)
The methodology used by the Quality of Life subgroup had four components:
- A systematic search of the medical literature on quality of life in ESRD patients;
- Consultation with experts in research design and quality of life assessment in patients with chronic illness;
- Discussions about assessment of quality of life in dialysis patients among members of the workgroup, and the development of an instrument to measure the quality of life of ESRD patients; and
- Testing of a quality of life measurement instrument that explicitly addresses the psychosocial and spiritual concerns of ESRD patients.
The findings of the Quality of Life subgroup were as follows:
- Quality of life instruments commonly in use to assess ESRD patient quality of life (e.g., SF-36 and Karnofsky Performance Scale) place considerable emphasis on physical, functional, and emotional status. Less emphasis is given to patient satisfaction and the assessment of social status and support. Very little, if any, attention is given to existential or spiritual concerns. The quality of life instruments in use are largely objective and provide little information regarding the patient’s perception of his/her quality of life.
- No accepted instrument exists for assessing spiritual concerns as they relate to quality.
- A modified quality of life instrument for ESRD patients that measures psychosocial status, support, and spiritual domains as well as dissatisfaction with aspects of quality of life could prove beneficial in treatment and could potentially result in a reduction of the number of patients who withdraw from dialysis.
Quality of Dying Subgroup
(See Appendix C a more complete discussion and products.)
The methodology of the Quality of Dying subgroup had four components:
- A systematic search of the medical literature on the dying experiences of ESRD patients;
- Discussions among members of the subgroup about the need to learn about the experiences of ESRD patients and families with respect to dying;
- An evaluation of the policies of major dialysis corporations of respect for the wishes of dialysis patients who choose not to undergo cardiopulmonary resuscitation; and
- A review of the informational materials that hospice programs provide to patients and families; and plans to adapt these to the specifics of terminal stages of life for ESRD patients.
The findings of the Quality of Dying subgroup were as follows:
- The available literature on the quality of the end-of-life experience and care for ESRD patients is inadequate, particularly from the perspectives of patients and families.
- Dialysis corporations have no consistent policy to honor the preferences of dialysis patients who do not want to undergo cardiopulmonary resuscitation. More worrisome, the policies of many dialysis units are either unclear on this point or prohibit honoring a legitimate Do Not Resuscitate (DNR) directive from an ESRD patient.
- There is a pervasive lack of correct information concerning the process of dying. This lack of correct information creates a significant obstacle to optimum end-of-life care and decision-making for ESRD patients and their families.
(See Appendix D for a more complete discussion and products.)
The Education subgroup used the following methods to assess the current state of knowledge of renal palliative care among those in the nephrology community:
- A review of the literature, including identification of articles, book chapters, and the extensive evidence-based literature search by the RPA/ASN Committee that drafted the Clinical Practice Guideline “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis”;
- Consensus in the group about the nephrology community’s limited knowledge of palliative care; and
- Informal surveys of nephrology colleagues and nephrology training programs.
The Education subgroup found the following:
- There are no ESRD-specific books or chapters on palliative care.
- A gap in the curriculum for nephrology training programs has resulted in significant gaps in nephrologists’ knowledge, attitudes, and practice skills relating to renal palliative/supportive care. Although the major nephrology societies have recently begun to address these issues through symposia (see Appendix D) and evidence-based guidelines (i.e., RPA/ASN Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis Clinical Practice Guideline, Feb. 2000), nephrology fellowship programs generally fail to include renal palliative/supportive care in their curricula.
- A culture of death denial prevails in dialysis units among nephrologists, staff, patients, and families.
- The American Medical Association Education for Physicians on End-of-Life Care (EPEC) program is partially relevant to ESRD but more focused on cancer patients. The ESRD population is specialized enough that a modification of the EPEC program is needed. The subgroup named this specialized training for nephrologists, Education for Nephrologists in End-of-Life Care (ENEC).
The subgroup identified a target audience for educational interventions regarding ESRD patient end-of-life care composed of the following:
- Nephrology fellows
- Government agencies responsible for ESRD, including the Centers for Medicare and Medicaid Services
- Corporations owning multiple dialysis units
- Patients and families, and
- Dialysis nurses, social workers, dietitians, and other dialysis staff and trainees.
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Promoting Excellence in End-of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.