Barriers to recruitment into emergency department-initiated palliative care: a sub-study of a multi-site, randomized controlled trial
Authors: Brickey Julia , Flannery Mara , Cuthel Allison , Cho Jeanne , Grudzen Corita R. ,   The EMPallA Investigators, Blaum Caroline , Southerland Lauren , Bischof Jason , Ouchi Kei , Elie Marie-Carmelle , Swor Robert , Jubanyik Karen , Goldfeld Keith S. , Cohen Susan E. , Kim Arum , Lowy Joseph , Scherer Jennifer S. , Bael Nancy E. , Gafford Ellin , Lakin Joshua , Barker Paige , Chmielewski Angela , Kapo Jennifer , Rubin Ada L. , Castro Isabel , Caplan Holden , Randhawa Simar Kaur , Carpenter Jordan , Theroux Gary , Murray Rebecca , Stuecher Laura , Daut Nora , Bonito Jennifer , Bakitas Marie , Batra Romilla , Booker-Vaughns Juanita , Chan Garrett K. , Dionne-Odom J. Nicholas , Dunn Patrick , Galvin Robert , Hopkins Ernest A. , Isaacs Eric David , Kizzie-Gillet Constance L. , Maguire Margaret M. , Pidatala Neha Reddy , Rosini Dawn , Vaughan William K. , Welsh Sally , Williams Pluscedia G. , Young-Brinn Angela , Navarro Martha 
Published: February 2022

Background

Emergency department (ED) visits among older adults are common near the end of life. Palliative care has been shown to reduce ED visits and to increase quality of life among patients, but recruitment into these programs is often challenging. This descriptive analysis explores the barriers to enrolling seriously ill patients scheduled for discharge from the ED into palliative care research.

Methods

This descriptive sub-study aims to assess the reasons why patients with advanced illness scheduled for discharge home from 11 EDs across the United States decline to participate in Emergency Medicine Palliative Care Access (EMPallA), a Phase IV randomized controlled trial (RCT) comparing two modes of palliative care delivery. Our aim was to understand why patients decline to enroll to improve future recruitment rates and expand care for patients discharged home from the ED. Research coordinators documented reasons that patients declined to enroll in the larger EMPallA trial; reasons for refusing participation were independently analyzed by two researchers to identify overarching themes.

Results

Enrollment rate across all sites was 45%; of the 504 eligible patients who declined participation, 47% (n = 237) declined for reasons related to illness severity. 28% of refusals (n = 143) were related to the mode of palliative care delivery, while 24% (n = 123) were due to misconceptions or stigma related to palliative care. Less commonly, patients refused due to general research barriers (16.5%), family/caregiver barriers (11.7%), and physician-related barriers (< 1%).

Conclusions

Patients with advanced illnesses presenting to the ED often refuse to participate in palliative care research due to the severity of their illness, the mode of care delivery, and misconceptions about palliative care. In contrast with other studies, our study found minimal physician gatekeeping, which may be the result of both changing attitudes toward palliative care and the nature of the ED setting. Robust training programs are crucial to overcome these misconceptions and to educate patients and providers about the role of palliative care. Future palliative care programs and study designs should recognize the burden this vulnerable population endures and consider alternative modes of care delivery in an effort to increase participation and enrollment.

Clinical trials registration

NCT03325985, October 30, 2017.