Developing a renal supportive care team from the voices of patients, families, and palliative care staff.

OBJECTIVE: Although half a million Americans suffer from end stage renal disease (ESRD), their quality of end-of-life care has been woefully inadequate. The Renal Supportive Care Team is a demonstration project that is designed to elicit and provide for the needs of dialysis patients and their families throughout the trajectory of their illnesses.

METHOD: Six focus groups, including medical health professionals, dialysis patients, family members, and bereaved family members, discussed how to promote improved palliative care and encourage hospice referral for patients with ESRD.

RESULTS: Respondents agreed that there needed to be greater education of both patients and families regarding all aspects of the disease process, open communication, on-going support between patients, families, and the staff, continuity of care, pain control, and assistance with advance care planning.

SIGNIFICANCE OF RESULTS: Palliative and supportive care issues in ESRD need greater attention.