Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients

Nwamaka D Eneanya, Sarah L Goff, Talaya Martinez, Natalie Gutierrez, Jamie Klingensmith, John L Griffith, Casey Garvey, Jenny Kitsen, Michael J Germain, Lisa Marr, Joan Berzoff, Mark Unruh, Lewis M Cohen, Nwamaka D Eneanya, Sarah L Goff, Talaya Martinez, Natalie Gutierrez, Jamie Klingensmith, John L Griffith, Casey Garvey, Jenny Kitsen, Michael J Germain, Lisa Marr, Joan Berzoff, Mark Unruh, Lewis M Cohen

Abstract

Background: End-stage renal disease carries a prognosis similar to cancer yet only 20 % of end-stage renal disease patients are referred to hospice. Furthermore, conversations between dialysis team members and patients about end-of-life planning are uncommon. Lack of provider training about how to communicate prognostic data may contribute to the limited number of end-of-life care discussions that take place with this chronically ill population. In this study, we will test the Shared Decision-Making Renal Supportive Care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided.

Methods/design: This multi-center study will deploy an intervention to improve end-of-life communication for hemodialysis patients who are at high risk of death in the ensuing six months. The intervention will be carried out as a prospective cohort with a retrospective cohort serving as the comparison group. Patients will be recruited from 16 dialysis units associated with two large academic centers in Springfield, Massachusetts and Albuquerque, New Mexico. Critical input from patient advisory boards, a stakeholder panel, and initial qualitative analysis of patient and caretaker experiences with advance care planning have informed the communication intervention. Rigorous communication training for hemodialysis social workers and providers will ensure that standardized study procedures are performed at each dialysis unit. Nephrologists and social workers will communicate prognosis and provide advance care planning in face-to-face encounters with patients and families using a social work-centered algorithm. Study outcomes including frequency and timing of hospice referrals, patient and caretaker satisfaction, quality of end-of-life discussions, and quality of death will be assessed over an 18 month period.

Discussion: The Shared Decision-Making Renal Supportive Care Communication intervention intends to improve discussions about prognosis and end-of-life care with end-stage renal disease patients. We anticipate that the intervention will help guide hemodialysis staff and providers to effectively participate in advance care planning for patients and caretakers to establish preferences and goals at the end of life.

Trial registration: NCT02405312.

Figures

Fig. 1
Fig. 1
Study Procedures. Abbreviations: SF-36 = Short Form – 36, SF-MPQ = Short Form McGill Pain Questionnaire, PHQ-9 = The Patient Health Questionnaire, DSI = Dialysis Symptoms Index, PSQ = Patient Satisfaction Questionnaire, KATZ = Katz Index of Independence in Activities of Daily Living, SP-MSQ = Cognition Short Portable Mental Status Questionnaire, SF-QDI = Short Family Quality of Death Interview, BQDA = Baystate Quality of Dying Assessment

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