The ESRD Workgroup has endorsed these recommendations. Each subgroup prepared recommendations that were reviewed by the entire workgroup. In some cases, the recommendations were accepted as is. In most cases the workgroup revised the recommendations.
Centers for Medicare and Medicaid Services (CMS)
The Promoting Excellence ESRD Workgroup asks CMS to:
- Update the "Conditions of Participation" for dialysis units to include requirements for advance care planning and the provision of palliative care.
- Collect data on hospice utilization on the 2746 form.
- Allow application of the Medicare hospice benefit to ESRD patients who are certified by their physicians as terminally ill but choose to continue dialysis until they die.
- Work in conjunction with hospice and the ESRD Networks to develop manuals and training for clinicians regarding coordination and linkage of dialysis and hospice care for ESRD patients.
- Require dialysis unit staffing to provide reasonable time for social workers to counsel patients on psychosocial issues surrounding end-of-life care. At present, social workers are not using their professional skills for psychosocial support of patients because they are given other roles such as arranging patient transportation. Others might perform these functions.
National Institute of Health, National Institute of Diabetes and Digestive and Kidney Diseases
The National Institute of Health and National Institute of Diabetes and Digestive and Kidney Diseases are asked to make the following adjustments to USRDS annual reports:
- Provide more data on patient survival, including Kaplan-Meier estimates of patient survival based on ESRD diagnosis, patient age at starting dialysis, and comorbid conditions.
- Expand data regarding ages and comorbidities of patients who are withdrawn from dialysis.
- Report data on hospice utilization and identify regional differences.
The nephrology research community is asked to:
- Study the extent to which hospice is utilized, the barriers to utilization, and the outcomes of hospice care for ESRD patients. The possible barriers to hospice utilization by ESRD patients include the lack of data on the benefits of hospice to ESRD patients and lack of financing for hospice care for ESRD patients.
- Identify the factors associated with patient perceptions of quality of life and life satisfaction.
- Develop new health-related quality of life tools that examine ESRD patient perceptions and subjective experience of their lives and ESRD treatment. These measures would encompass psychosocial status and support, patient satisfaction, and spiritual issues.
- Evaluate the relationships between quality of life assessments and patient outcomes to determine causal factors that contribute to quality of life.
- Identify, implement, and evaluate interventions that improve quality of life.
- Apply quality of life assessment tools to distinguish patients with poor quality of life and employ specific, corresponding interventions that have been demonstrated to be effective in longitudinal outcome studies.
- Assess prevailing knowledge and attitudes among ESRD patients and bereaved family members related to end-of-life care, and identify specific misconceptions and information gaps.
Nephrology educators are encouraged to:
- Develop a “train the trainers” course, using an adapted version of the ENEC program to train Program Directors, Network Medical Review Board Chairs, and medical directors of dialysis units.
- Include training in palliative care in nephrology fellowship programs, Nephrology Board review courses, and nephrology textbooks.
- Develop curricula on end-of-life care for dialysis patients for nephrology nurses, social workers, dietitians, and technicians to encourage multidisciplinary, comprehensive treatment. Much of this curriculum could be based on the Education for Nephrologists in End-of Life Care (ENEC) program developed by the ESRD Workgroup (see Appendix D), which provides nephrologists with a "new language" on advance care planning, giving bad news, and incorporating spiritual issues into their practice. ENEC also provides new knowledge and skills in pain and symptom management.
- Include palliative care content on performance tests for knowledge and competencies/skills for all clinical dialysis staff.
Nephrology Certifying Boards
Nephrology certifying boards are encouraged to:
- Include palliative care content on certifying examinations for Nephrology Board certification examinations.
- Include palliative care content on specialty certifying examinations for nephrology nurses, social workers, and technicians, and all clinical disciplines associated with care of ESRD patients.
Corporations that own and operate dialysis units are called upon to:
- Incorporate palliative care policies and practices into dialysis unit services.
- Adopt policies regarding CPR in the dialysis unit that respect patients’ rights of self-determination, including the right to refuse CPR and to have a DNR order issued and honored.
- Implement bereavement programs for the benefit of other patients, patients’ families, and dialysis staff.
- Support the development of peer mentoring in their dialysis units to enhance patient education and support.
- Foster the role of social workers in providing psychosocial support in their dialysis units, ensuring that dialysis social workers have sufficient time to offer psychosocial guidance and support for dialysis patients and their families.
The Promoting Excellence ESRD Workgroup recommends that Dialysis Units:
- Educate patients and families about palliative and end-of-life care.
- Institute palliative care programs that include pain and symptom management, advance care planning, and psychosocial and spiritual support for patients and families.
- Adopt policies regarding CPR in the dialysis unit that respect patients’ rights of self-determination, including the right to refuse CPR.
- Support the development of peer mentoring in their facilities.
- Develop and implement bereavement programs.
ESRD Networks can:
- Incorporate end-of-life/palliative care concepts into educational outreach programs.
- Conduct educational sessions for dialysis providers on the medical, ethical, legal, and practical issues surrounding CPR in the dialysis unit.
ESRD Patient Advocacy Organizations
Organizations providing patient education and advocacy organizations, such as the American Association of Kidney Patients (AAKP) and the National Kidney Foundation (NKF), are asked to:
- Develop patient-centered, sensitive, culturally relevant educational materials that are candid about the life-limiting nature of ESRD. These materials would convey the importance of patient choice about control over treatment, especially as complications of ESRD and comorbid conditions arise. These choices include advance directives, Do Not Resuscitate (DNR) orders, palliative care, and hospice as well as considerations related to dialysis withdrawal.
- Work with nephrology educators to distribute brochures and information about common symptoms, treatment, and available resources for ESRD patients and their families relative to the patients’ final days/hours of life.
- Promote the use of peer mentors to assist patients in their adjustment to ESRD and its treatment and to help them become knowledgeable about a full range of options as they prepare for the end of life.
Nephrology Health Care Professionals
To enhance the quality of life, nephrologists and other members of the renal care team are asked to:
- Incorporate interventions found to be effective in improving quality of life of ESRD patients into their own clinical practice and into routine care on dialysis units in which they practice.
- Routinely invite patients to express their end-of-life care preferences in the required semi-annual short-term and annual long-term care planning meetings.
- Encourage patients to communicate their preferences to family and to complete written advance directives.
- Refer dying ESRD patients to hospice and/or adopt a palliative care approach to their management.
Public and Private Funders of Research
The Promoting Excellence ESRD Workgroup calls upon funders of research in nephrology to:
- Support research in pain and symptom management for ESRD patients.
- Support research on patient perceptions of quality of life in ESRD, including research that identifies reasons for the high dialysis withdrawal rates.
- Support research on the impact of interventions that result in improved patient satisfaction with dialysis.
- Support research on the impact of peer mentoring on psychosocial measures of ESRD patient quality of life and research on end-of-life care planning among renal patients.
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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.