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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. Methods: Research coordinators monitored factors that prevented enrollment into a multi-site randomized controlled trial investigating two modes of community-based palliative care delivery for patients in the ED who are discharged home. Reasons for non-participation were documented and analyzed to identify themes within refusal data. Results: Enrollment rate across all sites was 45%. Of the 504 eligible patients who refused to participate, 237 (47.0%) refused due to barriers related to illness severity. Patients commonly refused due to misconceptions/stigma related to palliative care (123 [24.4%]). One-hundred forty-three patients (28.4%) refused due to the mode of palliative care delivery. Less commonly, patients refused due to general research barriers (16.5%), family/caregiver barriers (11.7%), and physician-related barriers (.1%). Discussion: Patients with advanced illnesses often refuse to participate in palliative care research due to the severity of their illness, misconceptions about palliative care, and the mode of care delivery. 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, https://clinicaltrials.gov/ct2/show/NCT03325985Trial Time Period: March 28, 2018 – January 31, 2020 |
