Dialysis is central to survival for 450,000 Americans with end-stage renal disease (ESRD). Yet patients on dialysis have significant comorbidities and high mortality rates (24% annually). One out of four ESRD patient deaths occurs after a decision to stop dialysis. However, when persons have lost their decision capacity if there has been no prior discussion between the patient and surrogate regarding goals of care, the issue of whether to continue dialysis can pose an ethical impasse and cause profound psychological distress for surrogate decision makers. Using the representational approach to patient education, we developed and pilot tested the SPIRIT intervention (Sharing the Patient's Illness Representation to Increase Trust) to improve discussions about end-of-life care between patients and their surrogate decision makers. SPIRIT is a 6-step, 2- session, face-to-face intervention presented to both patient and surrogate by a trained interventionist in an interview format. The proposed randomized controlled trial will test the effects of the SPIRIT intervention in improving preparedness for end-of-life decision making among ESRD patients and their surrogates and reducing surrogates'conflict during decision making and psychosocial morbidities. Subjects will be 200 Caucasian and African-American patients with ESRD recruited from outpatient dialysis clinics and their chosen surrogate decision makers. Preparedness outcomes (dyad congruence, patient decisional conflict, and surrogate decision making confidence) will be measured at 2, 6, and 12 months post-intervention. Surrogate decisional conflict and psychosocial morbidities (anxiety, depression, and post-traumatic distress symptoms) will be measured 2 weeks after the patient's hospitalization that required surrogate decision making. To compare the effects of SPIRIT to those of standard care on surrogates after the patient's death, psychosocial morbidities will be measured at 3 and 6 months after the patient's death. We will also explore the potential impact of race on intervention effects and examine mediators and moderators of the intervention effects.

Public Health Relevance

The proposed randomized controlled trial will test the SPIRIT intervention designed to improve discussions about end-of-life care between patients and their surrogate decision makers. Subjects will be 200 Caucasian and African-American patients with ESRD recruited from outpatient dialysis clinics and their chosen surrogate decision makers. The SPIRIT intervention to be tested with ESRD patients has the potential to have a broad impact in improving care for the seriously ill and their families who face end-of-life decision making.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Research Project (R01)
Project #
5R01NR011464-04
Application #
8318277
Study Section
Nursing Science: Adults and Older Adults Study Section (NSAA)
Program Officer
Aziz, Noreen M
Project Start
2009-09-30
Project End
2014-07-31
Budget Start
2012-08-01
Budget End
2013-07-31
Support Year
4
Fiscal Year
2012
Total Cost
$584,261
Indirect Cost
$180,793
Name
University of North Carolina Chapel Hill
Department
Type
Schools of Nursing
DUNS #
608195277
City
Chapel Hill
State
NC
Country
United States
Zip Code
27599
Song, Mi-Kyung; Ward, Sandra E; Lin, Feng-Chang et al. (2016) Racial Differences in Outcomes of an Advance Care Planning Intervention for Dialysis Patients and Their Surrogates. J Palliat Med 19:134-42
Song, Mi-Kyung; Ward, Sandra E; Fine, Jason P et al. (2015) Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates. Am J Kidney Dis 66:813-22
Song, Mi-Kyung; Ward, Sandra E (2015) Assessment effects in educational and psychosocial intervention trials: an important but often-overlooked problem. Res Nurs Health 38:241-7
Song, Mi-Kyung; Ward, Sandra E (2015) Making Visible a Theory-Guided Advance Care Planning Intervention. J Nurs Scholarsh 47:389-96
Song, Mi-Kyung; Ward, Sandra E (2014) Decisions about dialysis and other life-sustaining treatments should not be made separately. Am J Kidney Dis 64:817
Song, Mi-Kyung; Ward, Sandra E (2014) The extent of informed decision-making about starting dialysis: does patients' age matter? J Nephrol 27:571-6
Lutz, Erin R; Costello, Kaitlin L; Jo, Minjeong et al. (2014) A systematic evaluation of websites offering information on chronic kidney disease. Nephrol Nurs J 41:355-63; 364
Song, Mi-Kyung; Ward, Sandra E (2013) Disconnect between emergency contacts and surrogate decision-makers in the absence of advance directives. Palliat Med 27:789-92
Song, Mi-Kyung; Lin, Feng-Chang; Ward, Sandra E et al. (2013) Composite variables: when and how. Nurs Res 62:45-9
Song, Mi-Kyung; Lin, Feng-Chang; Gilet, Constance A et al. (2013) Patient perspectives on informed decision-making surrounding dialysis initiation. Nephrol Dial Transplant 28:2815-23

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