Research That Matters (January 17 - 20, 2008)

Purpose In 2004, 79,000 patients died from end stage renal disease (USRDS Annual Report, 2004).Yet advance care planning and education have been insufficient for population (Cohen, et. al, 2000; 2005; Perry, et al., 2003; Davison and Simpson, 2006). In 2006, Cohen, et al. received NIH funding to develop the first renal support care teams (RSCT).

The Method The authors ran six focus groups (n=36) including (1) health care professionals (2) dialysis patients, (3) family members and 4) bereaved family members to elicit their voices for how these teams might be most effective. Using a semi structured interviews which were administered verbally, the authors taped and transcribed all interviews and used axial coding to develop themes, sub-themes and categories, cross checking their findings with each other for reliability, while creating new categories of inquiry where appropriate

Results The analyses yielded five basic needs: for education, support, communication, continuity of care and advance care planning. Patients and families wanted better education on the procedure of dialysis, the trajectory of the illness, side effects of the medications, pain control and on discontinuing dialysis. They wanted more support throughout the trajectory of the illness, not only from staff but also from other patients, in the form of peer led support groups. They noted failures in communication in end of life planning. Staff needed better training in communication. The RSCT needed to act as a concierge, connecting the many health care providers through monthly meetings with each other, and through a designated professional to communicate with the patient and family. All subjects were aware that in end of life conversations, timing was crucial and that patients and families required assessments of readiness to engage in them.

Conclusions and implications While oncology patients routinely receive education, pain and symptom management, and options for advance care planning, renal patients have not. These subjects offered valuable input for renal support care teams to improve group, family and team work, provide better biopsychosocial assessments of patient and family readiness, better facilitation of end of life conversations and better continuity of care. Renal support care teams need to work across disciplines and across inpatient and outpatient services and social workers trained in assessment, teamwork, group and family work, training and outreach are well suited to take leadership in these teams.

References Cohen LM, Germain M.J., Poppel D.M., Woods A, Kjellstrand C.M. (2000) Dying well: After discontinuing the life support treatment of dialysis. Archives of Internal Medicine 160:2513-2518,

Cohen LM, Moss A, Weisbord S, Germain M (2006) Renal Palliative Care. Journal of Palliative Medicine 9(4)977-92,

Davison, SN & Simpson, C. (2006). BMJ, doi:10.1136/bmj.38965.626250.55

Perry E, Swartz J, Kelly G, Brown S, Swartz R..(2003): Palliative Care in Chronic Kidney Disease: Peer Mentoring Program Personalizes Advance Directives Discussions. Nephrology News and Issues, 17(8), 28-31.

US Renal Data System: USRDS 2004 Annual Data Report. The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2004