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Rural Hispanic/Latino cancer patients’ perspectives on facilitators, barriers, and suggestions for advance care planning: A qualitative study

Published online by Cambridge University Press:  05 October 2021

Eunjeong Ko*
Affiliation:
School of Social Work, San Diego State University, San Diego, CA
Annie J. Keeney
Affiliation:
School of Social Work, San Diego State University, San Diego, CA
Doreen Higgins
Affiliation:
Social Work Professional Programs, University of Wisconsin-Green Bay, Green Bay, WI
Nayeli Gonzalez
Affiliation:
Cancer Resource Center of the Desert, El Centro, CA
Helen Palomino
Affiliation:
Cancer Resource Center of the Desert, El Centro, CA
*
Author for correspondence: Eunjeong Ko, School of Social Work, San Diego State University, 5500 Campanile Drive, San Diego, CA 92182-4119, USA. E-mail: eko@sdsu.edu

Abstract

Objective

Hispanic/Latinos living in rural areas have limited healthcare resources, including palliative and hospice care. Moreover, little is known about advance care planning (ACP) among Hispanic/Latino cancer patients in rural areas. This study explores facilitators and barriers for ACP. It elicits suggestions to promote ACP among rural Hispanic/Latino cancer patients in a US/Mexico border region.

Methods

Hispanic/Latino cancer patients (n = 30) were recruited from a nonprofit cancer organization. Data were collected via in-person interviews. Interviews were transcribed and translated from Spanish to English. Data were uploaded into NVivo 12 and analyzed using thematic analysis.

Results

A common theme for facilitators and barriers for ACP was safeguarding family. Additional facilitators included (1) Desire for honoring end-of-life (EoL) care wishes and (2) experience with EoL care decision making. Additional barriers include (1) Family's reluctance to participate in EoL communication and (2) Patient–clinicians’ lack of EoL communication. Practice suggestions include (1) Death education and support for family, (2) ACP education, and (3) Dialogue vs. documentation.

Significance of results

ACP functions not only as a decisional tool; its utility reflects complex dynamics in personal, social, and cultural domains. ACP approaches with this underserved population must consider family relationships as well as cultural implications, including language barriers.

Type
Original Article
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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References

REFERENCES

Aoun, SM, Rumbold, B, Howting, D, et al. (2017) Bereavement support for family caregivers: The gap between guidelines and practice in palliative care. PLoS ONE 12(10), e0184750. doi:10.1371/journal.pone.0184750CrossRefGoogle ScholarPubMed
Barnes, K, Jones, L, Tookman, A, et al. (2007) Acceptability of an advance care planning interview schedule: A focus group study. Palliative Medicine 21(1), 2328. doi:10.1177/0269216306073638CrossRefGoogle ScholarPubMed
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77101. doi:10.1191/1478088706qp063oaCrossRefGoogle Scholar
Braun, UK, Beyth, RJ, Ford, ME, et al. (2008) Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. Journal of General Internal Medicine 23(3), 267274. doi:10.1007/s11606-007-0487-7CrossRefGoogle ScholarPubMed
Braun, UK, Beyth, RJ, Ford, ME, et al. (2014) Decision-making styles of seriously ill male veterans for end-of-life care: Autonomists, altruists, authorizers, absolute trusters, and avoiders. Patient Education and Counseling 94(3), 334341. doi:10.1016/j.pec.2013.10.013CrossRefGoogle ScholarPubMed
Carr, D (2011) Racial differences in end-of-life planning: Why don't Blacks and Latinos prepare for the inevitable? OMEGA – Journal of Death and Dying 63(1), 120. doi:10.2190/OM.63.1.aCrossRefGoogle ScholarPubMed
Carr, D (2012) “I don't want to die like that …”: The impact of significant others’ death quality on advance care planning. The Gerontologist 52(6), 770781. doi:10.1093/geront/gns051CrossRefGoogle Scholar
Carrion, IV, Nedjat-Haiem, FR, Martinez-Tyson, D, et al. (2013) Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis. Supportive Care in Cancer 21(5), 12331239. doi:10.1007/s00520-012-1652-zCrossRefGoogle ScholarPubMed
Cervantes, L, Jones, J, Linas, S, et al. (2017) Qualitative interviews exploring palliative care perspectives of Latinos on dialysis. Clinical Journal of the American Society of Nephrology: CJASN 12(5), 788798. doi:10.2215/CJN.10260916CrossRefGoogle ScholarPubMed
Chiarchiaro, J, Buddadhumaruk, P, Arnold, RM, et al. (2015) Prior advance care planning is associated with less decisional conflict among surrogates for critically ill patients. Annals of the American Thoracic Society 12(10), 15281533. doi:10.1513/AnnalsATS.201504-253OCCrossRefGoogle ScholarPubMed
Clark, MA, Person, SD, Gosline, A, et al. (2018) Racial and ethnic differences in advance care planning: Results of a statewide population-based survey. Journal of Palliative Medicine 21(8), 10781085. doi:10.1089/jpm.2017.0374CrossRefGoogle ScholarPubMed
Cohen-Mansfield, J, Skornick-Bouchbinder, M and Brill, S (2018) Trajectories of end of life: A systematic review. The Journal of Gerontology: Series B 73(4), 564572.CrossRefGoogle ScholarPubMed
Fink, RM, Kline, DM, Bailey, FA, et al. (2020) Community-based conversations about advance care planning for underserved populations using lay patient navigators. Journal of Palliative Medicine 23(7), 907914. doi:10.1089/jpm.2019.0470CrossRefGoogle ScholarPubMed
Fischer, SM, Sauaia, A and Kutner, JS (2007) Patient navigation: A culturally competent strategy to address disparities in palliative care. Journal of Palliative Medicine 10(5), 10231028. doi:10.1089/jpm.2007.0070CrossRefGoogle ScholarPubMed
Fischer, SM, Cervantes, L, Fink, RM, et al. (2015) Apoyo con cariño: A pilot randomized controlled trial of a patient navigator intervention to improve palliative care outcomes for Latinos With serious illness. Journal of Pain and Symptom Management 49(4), 657665. doi:10.1016/j.jpainsymman.2014.08.011CrossRefGoogle ScholarPubMed
Ke, L-S, Huang, X, Hu, W-Y, et al. (2016) Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies. Palliative Medicine 31(5), 394405. doi:10.1177/0269216316663507CrossRefGoogle ScholarPubMed
Kelley, AS, Wenger, NS and Sarkisian, CA (2010) Opiniones: End-of-life care preferences and planning of older Latinos. Journal of the American Geriatrics Society 58(6), 11091116. doi:10.1111/j.1532-5415.2010.02853.xCrossRefGoogle ScholarPubMed
Ko, E, Zúñiga, ML, Peacher, D, et al. (2018) Efficacy of cancer care communication between clinicians and latino patients in a rural US-Mexico border region: A qualitative study of barriers and facilitators to better communication. Journal of Cancer Education 33(1), 116127. doi:10.1007/s13187-016-1100-8CrossRefGoogle Scholar
Ko, E, Fuentes, D, Singh-Carlson, S, et al. (2020) Challenges and facilitators of hospice decision-making: A retrospective review of family caregivers of home hospice patients in a rural US–Mexico border region—A qualitative study. BMJ Open 10(7), e035634. doi:10.1136/bmjopen-2019-035634CrossRefGoogle Scholar
Lynch, S (2012) Hospice and palliative care access issues in rural areas. American Journal of Hospice and Palliative Medicine 30(2), 172177. doi:10.1177/1049909112444592CrossRefGoogle ScholarPubMed
Maldonado, LY, Goodson, RB, Mulroy, MC, et al. (2019) Wellness in sickness and health (The W.I.S.H. Project): Advance care planning preferences and experiences among elderly Latino patients. Clinical Gerontologist 42(3), 259266. doi:10.1080/07317115.2017.1389793CrossRefGoogle ScholarPubMed
Merriam, SB (2002) Qualitative Research in Practice: Examples for Discussion and Analysis. San Francisco: Jossey-Bass.Google Scholar
Schickedanz, AD, Schillinger, D, Landefeld, CS, et al. (2009) A clinical framework for improving the advance care planning process: Start with patients’ self-identified barriers. Journal of the American Geriatrics Society 57(1), 3139. doi:10.1111/j.1532-5415.2008.02093.xCrossRefGoogle ScholarPubMed
Simon, J, Porterfield, P, Bouchal, SR, et al. (2015) Not yet' and 'Just ask': barriers and facilitators to advance care planning-a qualitative descriptive study of the perspectives of seriously ill, older patients and their families. BMJ Supportive Palliat Care 5(1), 5462CrossRefGoogle ScholarPubMed
Smith, AK, McCarthy, EP, Paulk, E, et al. (2008) Racial and ethnic differences in advance care planning among patients with cancer: Impact of terminal illness acknowledgment, religiousness, and treatment preferences. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology 26(25), 41314137. doi:10.1200/JCO.2007.14.8452CrossRefGoogle ScholarPubMed
Smith, AK, Sudore, RL and Pérez-Stable, EJ (2009) Palliative care for Latino patients and their families: Whenever we prayed, she wept. JAMA 301(10), 1047–E1. doi:10.1001/jama.2009.308CrossRefGoogle ScholarPubMed
Su, CT, McMahan, RD, Williams, BA, et al. (2014) Family matters: Effects of birth order, culture, and family dynamics on surrogate decision-making. Journal of the American Geriatrics Society 62(1), 175182. doi:10.1111/jgs.12610CrossRefGoogle ScholarPubMed
Sudore, RL, Schillinger, D, Knight, SJ, et al. (2010) Uncertainty about advance care planning treatment preferences among diverse older adults. Journal of Health Communication 15(Suppl 2), 159171. doi:10.1080/10810730.2010.499982CrossRefGoogle ScholarPubMed
Sudore, RL, Lum, HD, You, JJ, et al. (2017) Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management 53(3), 821832.CrossRefGoogle ScholarPubMed
Sudore, RL, Schillinger, D, Katen, MT, et al. (2018) Engaging diverse English- and Spanish-speaking older adults in advance care planning: The PREPARE randomized clinical trial. JAMA Internal Medicine 178(12), 16161625. doi:10.1001/jamainternmed.2018.4657CrossRefGoogle ScholarPubMed
Virnig, B, Ma, H, Hartman, L, et al. (2006) Access to home-based hospice care for rural populations: Identification of areas lacking service. Journal of Palliative Medicine 9, 12921299. doi:10.1089/jpm.2006.9.1292Google ScholarPubMed
Weinhold, I and Gurtner, S (2014) Understanding shortages of sufficient health care in rural areas. Health Policy 118(2), 201214. doi:10.1016/j.healthpol.2014.07.018CrossRefGoogle ScholarPubMed
Yadav, KN, Gabler, NB, Cooney, E, et al. (2017) Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Affairs 36(7), 12441251. doi:10.1377/hlthaff.2017.0175CrossRefGoogle ScholarPubMed