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
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
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
NCT02405312
BMC palliative care 2015 Jun 12*** epublish ***
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
Division of Nephrology, Department of Internal Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA Aeneanya@partners org , Division of General Medicine, Department of Internal Medicine, Baystate Medical Center, Springfield, MA, USA Sarah GoffMD@baystatehealth org , Division of Nephrology, Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA Talayam@salud unm edu , Division of Nephrology, Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA Natalie gutierrez@baystatehealth org , Department of Psychiatry, Baystate Medical Center, Springfield, MA, USA Jamie klingensmith@baystatehealth org , Bouve College of Health Sciences, Northeastern University, Boston, MA, USA Jo griffith@neu edu , School of Nursing, Bouve College of Health Sciences, Northeastern University, Boston, MA, USA Garvey ca@husky neu edu , Kitsen and Associates, Chester, CT, USA Jkitsen@ne-esrd org , Division of Nephrology, Department of Internal Medicine, Baystate Medical Center, Springfield, MA, USA Michael Germain@baystatehealth org , Division of Geriatrics and Palliative Medicine, Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA LMarr@salud unm edu , Smith College School for Social Work, Smith College, Northampton, MA, USA Jberzoff@smith edu , Division of Nephrology, Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA Mlunruh@salud unm edu , Department of Psychiatry, Baystate Medical Center, Springfield, MA, USA Lewis Cohen@baystatehealth org