Skip to main content

Advertisement

SpringerLink
Log in

Integrating Palliative Care into the Chronic Illness Continuum: a Conceptual Model for Minority Populations

  • Published:
Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

Abstract

Although the use of palliative care has increased in recent years, chronically ill Americans within a racial/ethnic minority (non-White) population underutilize this supportive and comfort-giving healthcare service. Consequently, chronically ill minority Americans experience increased pain, symptom burden, and inappropriate use of healthcare resources compared to their white counterparts. A literature review was conducted to compile and synthesize the current state of research pertinent to improving the use of palliative care among chronically ill minority Americans. Selection criteria produced 18 relevant publications, which aided in developing a conceptual model that assimilated early, episodic, and late palliative care phases along the chronic illness continuum. The goal of the conceptual model was to provide a roadmap for healthcare professionals to use when designing, implementing, managing, and/or evaluating palliative care services for chronically ill minority Americans. The literature review demonstrated that minority patients benefitted the most from culturally tailored, systematic interventions (such as advanced care planning education) in all phases of palliative care, which led to increases in advance directive completion, better symptom control, and hospice utilization. The article concludes with a discussion and fictional case study portraying the importance of culturally tailored early palliative care as a catalyst for engaging minority patients in palliative care services.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. World Health Organization. WHO definition of palliative care. https://www.who.int/cancer/palliative/definition/en/ Accessed May 29, 2019.

  2. Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373:747–55.

    Article  CAS  Google Scholar 

  3. Zaide GB, Pekmezaris R, Nouryan CN, Mir TP, Sison CP, Liberman T, et al. Ethnicity, race, and advance directives in an inpatient palliative care consultation service. Palliat Support Care. 2013;11(1):5–11.

    Article  Google Scholar 

  4. Kavalieratos D, Mitchell E, Carey T. Not the ‘grim reaper service: an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. J Am Heart Assoc. 2014;3(1):e000544.

    Article  Google Scholar 

  5. Cunningham T, Croft J, Liu Y, et al. Vital signs: racial disparities in age-specific mortality among Blacks or African Americans – United States, 1999-2015. MMWR Morb Mortal Wkly Rep. 2017;66:444–56.

    Article  Google Scholar 

  6. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization. Rev. ed. April 2018. https://www.nhpco.org/sites/default/files/public/Statistics_Research/2017_Facts_Figures.pdf Accessed May 29, 2019.

  7. Wachterman MW, Lipsitz SR, Lorenz KA, Marcantonio ER, Li Z, Keating NL. End-of-life experience of older adults dying of end-stage renal disease: a comparison with cancer. J Pain Symptom Manag. 2017;54:789–97.

    Article  Google Scholar 

  8. Cain CL, Surbone A, Elk R, Kagawa-Singer M. Culture and palliative care: preferences, communication, meaning, and mutual decision making. J Pain Symptom Manag. 2018;55:1408–19.

    Article  Google Scholar 

  9. Fang ML, Sixsmith J, Sinclair S, Horst G. A knowledge synthesis of culturally – and spiritually – sensitive end-of-life care: findings from a scoping review. BMC Geriatr. 2016;16(107):1–14.

    Google Scholar 

  10. Karasouli E, Munday D, Bailey C, Staniszewska S, Hewison A, Griffiths F. Qualitative critical incident study of patients’ experiences leading to emergency hospital admission with advanced respiratory illness. BMJ Open. 2016;6(2):eoo9030.

    Article  Google Scholar 

  11. Volands A, Ariza M, Abbo E, Paasche-Orlow M. Overcoming educational barriers for advance care planning in Latinos with video images. J Palliat Med. 2008;11:700–6.

    Article  Google Scholar 

  12. Song M-K, Ward S, Lin F-C, et al. Racial differences in outcomes of an advance care planning intervention for dialysis patients and their surrogates. J Palliat Med. 2016;19:134–42.

    Article  Google Scholar 

  13. Lyon M, Squires L, D’Angelo L, et al. FAmily-CEntered (FACE) advanced care planning among African-American and non-African-American adults living with HIV in Washington, DC: a randomized controlled trail to increase documentation and health equity. J Pain Symptom Manag. 2019;57:607–16.

    Article  Google Scholar 

  14. Huang C-HS, Crowther M, Allen RS, DeCoster J, Kim G, Azuero C, et al. A pilot feasibility intervention to increase advance care planning among African Americans in the Deep South. J Palliat Med. 2016;19:164–73.

    Article  Google Scholar 

  15. Lee M, Hinder K, Friedmann E. Engaging Chinese American adults in advance care planning. J Geront Nurs. 2015;41(8):17–21.

    Article  Google Scholar 

  16. Sun A, Bui Q, Tsoh J, et al. Efficacy of a church-based, culturally tailored program to promote completion of advance directives among Asian Americans. J Immigr Minor Health. 2017;19:381–91.

    Article  Google Scholar 

  17. Chen J, Varges-Bustamante A, Mortenen K, et al. Racial and ethnic disparities in health care access and utilization under the affordable care act. Med Care. 2016;54(2):140–6.

    Article  Google Scholar 

  18. Bell C, Kuriya M, Fischberg D. Hospice referrals and code status: outcomes of inpatient palliative care consultations among Asian Americans and Pacific Islanders with cancer. J Pain Symptom Manag. 2011;42:557–64.

    Article  Google Scholar 

  19. Marr L, Neale D, Wolfe V, Kitzes J. Confronting myths: the Native American experience in an academic impatient palliative care consultation program. J Palliat Med. 2012;15:71–6.

    Article  Google Scholar 

  20. Zalenski RJ, Jones SS, Courage C, Waselewsky DR, Kostaroff AS, Kaufman D, et al. Impact of palliative care screening and consultation in the ICU: a multihospital quality improvement project. J Pain Symptom Manag. 2017;53:5–12 e13.

    Article  Google Scholar 

  21. Pecanac M, Repenshek M, Tennenbaum D, Hammes B. Respecting Choices® and advance directives in a diverse community. J Palliat Med. 2014;17:282–7.

    Article  Google Scholar 

  22. Rocque G, Dionne-Odom N, Huang C-H, et al. Implementation and impact of patient lay-navigator-led advance care planning conversations. J Pain Symptom Manag. 2017;53:682–92.

    Article  Google Scholar 

  23. Evangelista L, Motie M, Lombardo D, Ballard-Hernandez J, Malik S, Liao S. Does preparedness planning improve attitudes and completion of advance directives in patients with symptomatic heart failure? J Palliat Med. 2012;15:1316–20.

    Article  Google Scholar 

  24. Zalenski R, Courage C, Edelen A, et al. Evaluation of screening criteria for palliative care consultation in the MICH: a multihospital analysis. BMJ. 2014;0:1–9.

    Google Scholar 

  25. Fisher SM, Kline DM, Min S-J, Okuyama-Sasaki S, Fink RM. Effect of Apoyo con Cariño (Support With Caring) trial of a patient navigator intervention to improve palliative care outcomes for Latino adults with advanced cancer: a randomized clinical trial. JAMA Oncol. 2018;4(12):1736–47.

    Article  Google Scholar 

  26. Sacco J, Deravin Car D, Viola D. The effects of the palliative medicine consolation on the DNR status of African Americans in a safety-net hospital. Am J Hosp Palliat Care. 2013;30(4):363–9.

    Article  Google Scholar 

  27. Sharma R, Cameron K, Chmiel J, et al. Racial/ethnic differences in inpatient palliative care consultation for patients with advanced cancer. J Clin Oncol. 2015;33:3802–8.

    Article  Google Scholar 

  28. Shen M, Prigerson H, Paulk E, et al. Impact of end-of-life discussion on the reduction of Latino/non-Latino disparities in do-not-resuscitate order completion. Cancer. 2016;122:1749–56.

    Article  Google Scholar 

  29. Periyakoil VS, Neri E, Kraemer H. Patient-reported barriers to high-quality, end-of-life care: a multiethnic, multilingual, mixed-methods study. J Palliat Med. 2016;19(4):373–9.

    Article  Google Scholar 

  30. Hopp F, Zalenski R, Waselewsky D, et al. Results of a hospital-based palliative care intervention for patients with an acute exacerbation of chronic heart failure. J Card Fail. 2016;22:1033–6.

    Article  Google Scholar 

Download references

Acknowledgments

The authors thank Dr. Glenn Ostir and Dr. Lovoria Williams for their assistance with the manuscript.

Author information

Authors and Affiliations

  1. Augusta University, 1905 Barnett Shoals Road, Athens, GA, 30605, USA

    Shena Gazaway

  2. Augusta University, 978 St. Sebastian Way, Augusta, GA, 30912, USA

    Merry Stewart & Autumn Schumacher

Authors
  1. Shena Gazaway
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Merry Stewart
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Autumn Schumacher
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Shena Gazaway.

Ethics declarations

Conflict of Interest

The authors declare that they have no conflict of interest.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Gazaway, S., Stewart, M. & Schumacher, A. Integrating Palliative Care into the Chronic Illness Continuum: a Conceptual Model for Minority Populations. J. Racial and Ethnic Health Disparities 6, 1078–1086 (2019). https://doi.org/10.1007/s40615-019-00610-y

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40615-019-00610-y

Keywords

Search

Navigation