This randomized controlled trial tested an intervention, Sharing Patients' Illness Representations to Increase Trust (SPIRIT), designed to enhance communication regarding end-of-life care between African Americans with end-stage renal disease (ESRD) and their chosen surrogate decision makers (N = 58 dyads). We used surveys and semi-structured interviews to determine the feasibility, acceptability, and preliminary effects of SPIRIT on patient and surrogate outcomes at 1 week and 3 months post-intervention. We also evaluated patients' deaths and surrogates' end-oflife decision making to assess surrogates' perceptions of benefits and limitations of the SPIRIT while facing end-of-life decisions. We found that SPIRIT promoted communication between patients and their surrogates and was effective and well received by the participants.
Keywordsend-stage renal disease (ESRD); African American; end-of-life care; decision making; representational intervention
Randomized Controlled Trial of SPIRIT: An Effective Approach to Preparing African American Dialysis Patients and Families for End-of-LifeAdvances in medicine may extend life but often with decreasing quality and escalating dependence on medical technologies (Blank & Merrick, 2005). End-stage renal disease (ESRD) is an example of a chronic illness wherein a technology, dialysis, significantly extends patients' lives but does not necessarily improve the quality of that prolonged survival. The annual mortality rate in this population is high; of 450,000 patients with ESRD, more than 79,000 died in the United States in 2004 (U.S. Renal Data System, 2007. The Renal Physicians Association and American Society of Nephrology (2000) recommend that clinicians initiate timely and continuous discussions with dialysis patients and theirCorresponding author: Mi-Kyung Song, PhD, University of North Carolina at Chapel Hill, School of Nursing, 4108 Carrington Hall, CB # 7460, Chapel Hill, NC 27599-7460, Phone: 919.843.9496, Fax: 919.843.9900, Email: songm@email.unc.edu. The study was conducted at the University of Pittsburgh.
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Author ManuscriptRes Nurs Health. Author manuscript; available in PMC 2009 August 3.
NIH-PA Author ManuscriptNIH-PA Author Manuscript NIH-PA Author Manuscript families to assist them in expressing wishes about options in managing their illness and end of life. However, many such discussions are delayed until near death and are narrowly targeted to completion of advance directives (Cherlin, et al., 2005;Covinsky, et al., 2000) despite the widely documented limitations associated with advance directives (Fagerlin & Schneider, 2004;Perkins, 2007).Several factors contribute to the lack of timely end-of-life discussions. Patients and their families may not foresee that death is approaching. This lack of foresight may be due to patients' vacillating between focusing on the illness (having kidney disease) or on the relative wellness they experience from dialysis. Once acclimated to a life on dialysis, patients and their families may have a pe...