Journal of Hospice and Palliative Care

Korean Society for Hospice and Palliative Care (한국호스피스완화의료학회)
권호 표지
DOI QR코드

DOI QR Code

Barriers to Effective Communication about Advance Care Planning and Palliative Care: A Qualitative Study

  • Hyosin Kim (College of Public Health & Human Sciences, Oregon State University) ;
  • Signe Peterson Flieger (Tufts Center for Health Systems and Policy Department of Public Health and Community Medicine, Tufts University School of Medicine)
  • Received : 2022.11.24
  • Accepted : 2023.02.25
  • Published : 2023.06.01
Download PDF
⟨ Previous Next ⟩

Abstract

Purpose: The purpose of this study was to identify barriers to effective conversations about advance care planning (ACP) and palliative care reported by health care and community-based service providers in Massachusetts, USA. Methods: This qualitative research analyzed open-ended responses to two survey questions, inquiring about perceived barriers to having conversations about ACP and palliative care with patients and consumers. Data were collected between November 2017 and June 2019 from nine organizations in Massachusetts, including health care provider organizations, health insurers, community-based organizations, and a nursing education institution. Two researchers reviewed and coded the responses and identified common themes inductively. Results: Across 142 responses, primary barriers to ACP included hesitation and lack of understanding and knowledge, discomfort and resistance among service providers, lack of staff knowledge, difficulties with followup, and differences in ACP policies across regions. Common barriers to palliative care were misconceptions about palliative care and lack of knowledge, service providers' lack of preparedness, and limited policy support and availability. Challenges relevant to both ACP and palliative care were fear and discomfort around serious illness discussions, lack of knowledge and awareness, discussions that occur too late, and cultural and language barriers. Conclusion: Health care practitioners and community-based professionals reported consumer-, service provider-, and system-level barriers to facilitating conversations about ACP and palliative care with patients experiencing serious illness. There is a need for more tools and support to strengthen service providers' ACP and palliative care competencies and to promote a structured approach to health care planning conversations.

Keywords

Acknowledgement

We would like to thank the nine Honoring Choices Massachusetts Partners who participated in this study and facilitated survey data collection: Baystate Health, Boston College Nursing Program, Cape Cod Quality Task Force, Fallon Health, Harvard Pilgrim Healthcare, HESSCO, LifeCare Advocates, Jewish Health Care Center and UMASS Memorial Health Care. We greatly appreciate the time and dedication of Ellen DiPaola, President and CEO of Honoring Choices Massachusetts, for facilitating survey data collection and ensuring follow-up with partner organizations and Hannah Sudhakar for transcribing the survey responses.

References

  1. Lovell A, Yates P. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008-2012. Palliat Med 2014;28:1026-35. https://doi.org/10.1177/0269216314531313
  2. Khandelwal N, Benkeser DC, Coe NB, Curtis JR. Potential influence of advance care planning and palliative care consultation on ICU costs for patients with chronic and serious illness. Crit Care Med 2016;44:1474-81. https://doi.org/10.1097/CCM.0000000000001675
  3. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining advance care planning for adults: A consensus definition from a multidisciplinary delphi panel. J Pain Symptom Manage 2017;53:821-32.e1. https://doi.org/10.1016/j.jpainsymman.2016.12.331
  4. What is palliative care? [Internet]. New York, NY: Center to Advance Palliative Care; 2022 [cited 2022 Oct 25]. Available from: https://www.capc.org/about/palliative-care/.
  5. What are palliative care and hospice care? [Internet]. Maryland: National Institute on Aging; 2022 [cited 2022 Oct 25]. Available from: https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care.
  6. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:c1345.
  7. Hanson LC, Usher B, Spragens L, Bernard S. Clinical and economic impact of palliative care consultation. J Pain Symptom Manage 2008;35:340-6. https://doi.org/10.1016/j.jpainsymman.2007.06.008
  8. Morrison RS, Penrod JD, Cassel JB, Caust-Ellenbogen M, Litke A, Spragens L, et al. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med 2008;168:1783-90. https://doi.org/10.1001/archinte.168.16.1783
  9. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665-73. https://doi.org/10.1001/jama.300.14.1665
  10. Zwakman M, Jabbarian LJ, van Delden J, van der Heide A, Korfage IJ, Pollock K, et al. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliat Med 2018;32:1305-21. https://doi.org/10.1177/0269216318784474
  11. Canter B, Burack O, Reinhardt J, Mak W, Weerahandi H, Canter B, et al. Goals of care during the COVID-19 pandemic: implementing DNI, DNR, and DNH orders in a skilled nursing facility. J Am Med Dir Assoc 2021;22:B21.
  12. Curtis JR, Kross EK, Stapleton RD. The importance of addressing advance care planning and decisions about do-not-resuscitate orders during novel Coronavirus 2019 (COVID-19). JAMA 2020;323:1771-2. https://doi.org/10.1001/jama.2020.4894
  13. Morrison RS, Meier DE. America's care of serious illness: a state-by state report card on access to palliative care in our nation's hospitals [Internet]. New York, NY: Center to Advance Palliative Care; National Palliative Care Research Center; 2019 [cited 2022 Oct 21]. Available from: https://reportcard.capc.org/wp-content/uploads/2020/05/CAPC_State-by-State-Report-Card_051120.pdf.
  14. Resources [Internet]. Lincoln, MA: Honoring Choices Massachusetts; 2022 [cited 2022 Oct 26]. Available from: https://www.honoringchoicesmass.com/resources/.
  15. Home [Internet]. Lincoln, MA: Honoring Choices Massachusetts; 2022 [cited 2022 Oct 26]. Available from: https://www.honoringchoicesmass.com.
  16. Serious illness care [Internet]. New York, NY: Advance Palliative Care: c2019. [updated 2020 May; cited 2022 Oct 26]. Available from: https://www.ariadnelabs.org/serious-illness-care/.
  17. Serious illness conversation guide [Internet]. Boston, MA: Ariadne Labs; c2015 [updated 2017 Apr 18; cited 2022 Oct 26]. Available from: https://www.ariadnelabs.org/wp-content/uploads/2017/05/SI-CG-2017-04-21_FINAL.pdf.
  18. 2019 State-by-state report card on access to palliative care in our nation's hospitals [Internet]. New York, NY: Center to Advance Palliative Care; 2019 [cited 2022 Oct 26]. Available from: https://reportcard.capc.org/state/massachusetts.
  19. Massachusetts Coalition for Serious Illness Care. Massachusetts survey on advance care planning and serious illness care: Spring 2018 survey of Massachusetts residents. Boston: Massachusetts Coalition for Serious Illness Care; c2018.
  20. Kim H, Sudhakar H, Flieger S. A mixed methods case study examining the impact and implementation of a structured approach to advance care planning in Massachusetts [Internet]. APHA 2021 Annual Meeting and Expo; 2021 Oct 22; Denver, USA. Washington, DC; American Public Health Association; c2021 [cited 2022 Oct 26]. Available from: https://apha.confex.com/apha/2021/meetingapp.cgi/Session/63006.
  21. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res 2007;42:1758-72. https://doi.org/10.1111/j.1475-6773.2006.00684.x
  22. Glaser BG, Strauss AL. Discovery of grounded theory: Strategies for qualitative research. New York: Aldine De Gruyter; 1967.
  23. Consumer-driven health care [Internet]. Essex, England, New York, NY: Elsevier Applied Science; Elsevier Science Pub. Co.; 2017 [cited 2022 Oct 26]. Available from: https://www.sciencedirect.com/topics/medicine-and-dentistry/consumer-driven-health-care.
  24. 5 Things to talk about a conversation guide series for consumers and care providers [Internet]. Lincoln, MA: Honoring Choices Massachusetts; 2022 [cited 2022 Oct 26]. Available from: https://www.honoringchoicesmass.com/conversation-guides-series.
  25. Krakauer EL, Crenner C, Fox K. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc 2002;50:182-90. https://doi.org/10.1046/j.1532-5415.2002.50027.x
  26. McDermott E, Selman LE. Cultural factors influencing advance care planning in progressive, incurable disease: a systematic review with narrative synthesis. J Pain Symptom Manage 2018;56:613-36. https://doi.org/10.1016/j.jpainsymman.2018.07.006
  27. Betancourt JR, Green AR, Carrillo JE, Ananeh-Firempong O 2nd. Defining cultural competence: a practical framework for addressing racial/ethnic disparities in health and health care. Public Health Rep; 2003;118:293-302. https://doi.org/10.1016/S0033-3549(04)50253-4
  28. Peters C, Kim O, Udow-Phillips M. Using community input to improve advance care planning [Internet]. Washington, DC: Health Affairs; 2016 [cited 2022 Oct 26]. Available from: https://www.healthaffairs.org/do/10.1377/forefront.20160822.056209.