Barriers to palliative care research for emergency department patients with advanced cancer

Abstract

Background: Patients with advanced cancer often visit the emergency department (ED). Little is known about their willingness or ability to engage in palliative care research, although enrollment in clinical trials of other seriously ill ED patients—those with stroke, for example—has been shown to be feasible.

Objective: To identify barriers to the enrollment of ED patients with advanced cancer in palliative care research.

Methods: We prospectively tracked factors that affected patient accrual into a trial of palliative care for adults with metastatic solid tumors at an urban, academic ED. Research staff screened the electronic medical records for patients admitted to the hospital with metastatic solid tumors 8-12 hours a day, Monday through Friday. The ED attending of record and the patient's medical oncologist had to agree before research staff invited the patient to participate. Informed consent was obtained at the bedside in the ED, and patients were offered a $20 incentive to participate.

Results: Attempts were made to enroll 150 eligible patients in the study, and 73 were enrolled (49% enrollment rate). Barriers to enrollment for the 77 patients who did not participate were deduced from the field notes and placed into the following categories: patient refusal (n = 38, 49%), diagnostic uncertainty regarding cancer stage (n = 11, 14%), symptom burden (n = 9, 12%), family refusal (n = 7, 9%), physician refusal (n = 7, 9%), and/or patient unaware of illness or stage (n = 5, 7%).

Limitations: The findings are descriptive and do not test predetermined hypotheses.

Conclusion: Patient refusal, symptom burden, and diagnostic disparities are common barriers encountered when recruiting ED patients with advanced cancer. Despite the barriers, recruitment was feasible for such ED patients.

Funding/sponsor: This study was funded by a Mentored Research Scholar Grant from the American Cancer Society (Dr Grudzen), a Medical Student Training in Aging Research Grant from the American Federation on Aging (Mr Kandarian), and by a Mid- Career Investigator Award in Patient Oriented Research (K24 AG022345) from the National Institute on Aging (Dr Morrison).