Barriers to recruitment into emergency department-initiated palliative care: a sub-study of a multi-site, randomized controlled trial

Julia Brickey, Mara Flannery, Allison Cuthel, Jeanne Cho, Corita R Grudzen, EMPallA Investigators, Caroline Blaum, Lauren Southerland, Jason Bischof, Kei Ouchi, Marie-Carmelle Elie, Robert Swor, Karen Jubanyik, Keith S Goldfeld, Susan E Cohen, Arum Kim, Joseph Lowy, Jennifer S Scherer, Nancy E Bael, Ellin Gafford, Joshua Lakin, Paige Barker, Angela Chmielewski, Jennifer Kapo, Ada L Rubin, Isabel Castro, Holden Caplan, Simar Kaur Randhawa, Jordan Carpenter, Gary Theroux, Rebecca Murray, Laura Stuecher, Nora Daut, Jennifer Bonito, Marie Bakitas, Romilla Batra, Juanita Booker-Vaughns, Garrett K Chan, J Nicholas Dionne-Odom, Patrick Dunn, Robert Galvin, Ernest A Hopkins 3rd, Eric David Isaacs, Constance L Kizzie-Gillet, Margaret M Maguire, Neha Reddy Pidatala, Dawn Rosini, William K Vaughan, Sally Welsh, Pluscedia G Williams, Angela Young-Brinn, Martha Navarro, Julia Brickey, Mara Flannery, Allison Cuthel, Jeanne Cho, Corita R Grudzen, EMPallA Investigators, Caroline Blaum, Lauren Southerland, Jason Bischof, Kei Ouchi, Marie-Carmelle Elie, Robert Swor, Karen Jubanyik, Keith S Goldfeld, Susan E Cohen, Arum Kim, Joseph Lowy, Jennifer S Scherer, Nancy E Bael, Ellin Gafford, Joshua Lakin, Paige Barker, Angela Chmielewski, Jennifer Kapo, Ada L Rubin, Isabel Castro, Holden Caplan, Simar Kaur Randhawa, Jordan Carpenter, Gary Theroux, Rebecca Murray, Laura Stuecher, Nora Daut, Jennifer Bonito, Marie Bakitas, Romilla Batra, Juanita Booker-Vaughns, Garrett K Chan, J Nicholas Dionne-Odom, Patrick Dunn, Robert Galvin, Ernest A Hopkins 3rd, Eric David Isaacs, Constance L Kizzie-Gillet, Margaret M Maguire, Neha Reddy Pidatala, Dawn Rosini, William K Vaughan, Sally Welsh, Pluscedia G Williams, Angela Young-Brinn, Martha Navarro

Abstract

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.

Keywords: Emergency care; Emergency department; Emergency medical services; Hospice and palliative care nursing; Palliative care; Palliative care medicine; Palliative care nursing; Palliative medicine; Palliative nursing; Palliative supportive care; Patient engagement; Patient participation; Patient participation rates; Patient recruitment; Patient selection; Quality of life; Refusal to participate; Research design; Research strategy; Research subject recruitment; Telehealth; Telemedicine; Telephone.

Conflict of interest statement

The authors declare that they have no competing interests.

© 2022. The Author(s).

Figures

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Fig. 1
CONSORT Diagram

References

    1. Brumley RD, Enguidanos S, Cherin DA. Effectiveness of a home-based palliative care program for end-of-life. J Palliat Med. 2003;6(5):715–724. doi: 10.1089/109662103322515220.
    1. Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care. J Am Geriatr Soc. 2007;55(7):993–1000. doi: 10.1111/j.1532-5415.2007.01234.x.
    1. Strömgren AS, Sjogren P, Goldschmidt D, et al. A longitudinal study of palliative care: patient-evaluated outcome and impact of attrition. Cancer. 2005;103(8):1747–1755. doi: 10.1002/cncr.20958.
    1. Riegel B, Carlson B, Kopp Z, LePetri B, Glaser D, Unger A. Effect of a standardized nurse case-management telephone intervention on resource use in patients with chronic heart failure. Arch Intern Med. 2002;162(6):705–712. doi: 10.1001/archinte.162.6.705.
    1. LeBlanc TW, Lodato JE, Currow DC, Abernethy AP. Overcoming recruitment challenges in palliative care clinical trials. J Oncol Pract. 2013;9(6):277–282. doi: 10.1200/JOP.2013.000996.
    1. Rinck GC, van den Bos GAM, Kleijnen J, de Haes HJCJM, Schadé E, Veenhof CHN. Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol. 1997;15(4):1697–1707. doi: 10.1200/JCO.1997.15.4.1697.
    1. Fischer SM, Gozansky WS, Sauaia A, Min SJ, Kutner JS, Kramer A. A practical tool to identify patients who may benefit from a palliative approach: the CARING criteria. J Pain Symptom Manag. 2006;31(4):285–292. doi: 10.1016/j.jpainsymman.2005.08.012.
    1. LeBlanc TW, Wheeler JL, Abernethy AP. Research in end-of-life settings: an ethical inquiry. J Pain Palliat Care Pharmacother. 2010;24(3):244–250. doi: 10.3109/15360288.2010.493579.
    1. Ammari ABH, Hendriksen C, Rydahl-Hansen S. Recruitment and reasons for non-participation in a family-coping-orientated palliative home care trial (FamCope) J Psychosoc Oncol. 2015;33(6):655–674. doi: 10.1080/07347332.2015.1082168.
    1. Smith AK, Fisher J, Schonberg MA, et al. Am I doing the right thing? Provider perspectives on improving palliative care in the emergency department. Ann Emerg Med. 2009;54(1):86–93.e1. doi: 10.1016/j.annemergmed.2008.08.022.
    1. Anselm AH, Palda V, Guest CB, et al. Barriers to communication regarding end-of-life care: perspectives of care providers. J Crit Care. 2005;20(3):214–223. doi: 10.1016/j.jcrc.2005.05.012.
    1. Kelley AS, Morrison RS. Palliative Care for the Seriously ill. N Engl J Med. 2015;373(8):747–755. doi: 10.1056/nejmra1404684.
    1. Smith TJ, Coyne P, Cassel B, Penberthy L, Hopson A, Hager MA. A high-volume specialist palliative care unit and team may reduce in-hospital end-of-life care costs. J Palliat Med. 2003;6(5):699–705. doi: 10.1089/109662103322515202.
    1. George N, Phillips E, Zaurova M, Song C, Lamba S, Grudzen C. Palliative care screening and assessment in the emergency department: a systematic review. J Pain Symptom Manag. 2016;51(1):108–119.e2. doi: 10.1016/j.jpainsymman.2015.07.017.
    1. Marcelin I, McNaughton C, Tang N, Caterino J, Grudzen C. Palliative care needs of advanced Cancer patients in the emergency department (S767) J Pain Symptom Manag. 2018;55(2):693. doi: 10.1016/j.jpainsymman.2017.12.421.
    1. Grudzen CR, Richardson LD, Kandarian B, Ortiz J, Copeli N, Morrison RS. Barriers to palliative care research for emergency department patients with advanced cancer. J Community Support Oncol. 2014;12(5):158–162. doi: 10.12788/jcso.0040.158.
    1. Huang GD, Bull J, Johnston McKee K, Mahon E, Harper B, Roberts JN. Clinical trials recruitment planning: a proposed framework from the clinical trials transformation initiative. Contemp Clin Trials. 2018;66:74–79. doi: 10.1016/j.cct.2018.01.003.
    1. Grudzen CR, Shim DJ, Schmucker AM, Cho J, Goldfeld KS. Emergency medicine palliative care access (EMPallA): protocol for a multicentre randomised controlled trial comparing the effectiveness of specialty outpatient versus nurse-led telephonic palliative care of older adults with advanced illness. BMJ Open. 2019;9(1):1–8. doi: 10.1136/bmjopen-2018-025692.
    1. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–381. doi: 10.1016/j.jbi.2008.08.010.Research.
    1. Kane RL, Wang J, Garrard J. Reporting in randomized clinical trials improved after adoption of the CONSORT statement. J Clin Epidemiol. 2007;60(3):241–249. doi: 10.1016/j.jclinepi.2006.06.016.
    1. Begg C, Cho M, Eastwood S, et al. Of randomized controlled trials the CONSORT statement. Jama. 1996;276(8):637–639. doi: 10.1001/jama.1996.03540080059030.
    1. Toerien M, Brookes ST, Metcalfe C, et al. A review of reporting of participant recruitment and retention in RCTs in six major journals. Trials. 2009;10:1–12. doi: 10.1186/1745-6215-10-52.
    1. Kandarian B, Morrison RS, Richardson LD, Ortiz J, Grudzen CR. Emergency department-initiated palliative care for advanced cancer patients: protocol for a pilot randomized controlled trial. Trials. 2014;15(1):1–7. doi: 10.1186/1745-6215-15-251.
    1. Grudzen CR, Richardson LD, Johnson PN, et al. Emergency department-initiated palliative care in advanced cancer a randomized clinical trial. JAMA Oncol. 2016;2(5):591–598. doi: 10.1001/jamaoncol.2015.5252.
    1. Kistler EA, Sean Morrison R, Richardson LD, Ortiz JM, Grudzen CR. Emergency department-triggered palliative care in advanced cancer: proof of concept. Acad Emerg Med. 2015;22(2):237–239. doi: 10.1111/acem.12573.
    1. Williams MV. A requirement to reduce readmissions: take care of the patient, not just the disease. JAMA. 2013;309(4):394–396. doi: 10.1001/jama.2012.233964.
    1. Hanratty B, Hibbert D, Mair F, et al. Doctor’s understanding of palliative care. Palliat Med. 2006;20(5):493–497. doi: 10.1191/0269216306pm1162oa.
    1. Cheung NY, Gorelik A, Mehta P, et al. Perception of palliative medicine by health care professionals at a teaching community hospital: what is the key to a “palliative attitude”? J Multidiscip Healthc. 2019;12:437–443. doi: 10.2147/jmdh.s182356.
    1. Dumanovsky T, Augustin R, Rogers M, Lettang K, Meier DE, Morrison RS. The growth of palliative Care in U.S. hospitals: a status report. J Palliat Med. 2016;19(1):8–15. doi: 10.1089/jpm.2015.0351.
    1. Kars MC, Van Thiel GJMW, Van Der Graaf R, Moors M, De Graeff A, Van Delden JJM. A systematic review of reasons for gatekeeping in palliative care research. Palliat Med. 2016;30(6):533–548. doi: 10.1177/0269216315616759.
    1. Hanson LC, Bull J, Wessell K, et al. Strategies to support recruitment of patients with life-limiting illness for research: the palliative care research cooperative group. J Pain Symptom Manag. 2014;48(6):1021–1030. doi: 10.1016/j.jpainsymman.2014.04.008.
    1. Reinke LF, Vig EK, Tartaglione EV, Backhus LM, Gunnink E, Au DH. Protocol and pilot testing: the feasibility and acceptability of a nurse-led telephone-based palliative care intervention for patients newly diagnosed with lung cancer. Contemp Clin Trials. 2018;64:30–34. doi: 10.1016/j.cct.2017.11.013.
    1. Yamarik R, Batra R, Matthews L. A health Plan’s innovative telephonic case management model to provide palliative care (TH303) J Pain Symptom Manag. 2015;49(2):329. doi: 10.1016/j.jpainsymman.2014.11.027.
    1. Kripalani S, Theobald CN, Anctil B, Vasilevskis EE. Reducing hospital readmission rates: current strategies and future directions. Annu Rev Med. 2013;65(1):471–485. doi: 10.1146/annurev-med-022613-090415.
    1. Hansen L, Young R, Hinami K, Leung A, Williams M. Interventions to reduce 30-day rehospitilization: a systematic review. Ann Intern Med. 2013;155:520–528. doi: 10.7326/0003-4819-155-8-201110180-00008.

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