Culturally Responsive Care for Patients with a Serious Illness

Fast Fact Number: 478

By: Arshia Madni MD

Published On: February 8, 2024

Background: Invariably, clinicians will care for patients with life-threatening illnesses whose culture, values, beliefs, and practices differ from their own (1). To do this well, all clinicians must demonstrate skills in cultural awareness, humility, and responsiveness especially as they pertain to end-of-life (EOL) care practices and preferences (2-5). This Fast Fact builds upon an existing library (see Fast Fact #78, Fast Fact #204, Fast Fact #216, Fast Fact #275, Fast Fact #399, Fast Fact #435, Fast Fact #449, Fast Fact #468, Fast Fact #469, Fast Fact #475) to offer broader reasoning and clinical frameworks to help clinicians provide more culturally responsive care to patients with a serious illness.

National Clinical Practice Guidelines for Quality Palliative Care highlights the clinician’s responsibility to address cultural aspects of care and be culturally responsive to the patient’s unique physical, psychological, social, and spiritual needs (Domains 6 and 8) (6).Culture and values can impact pain perceptions, communication preferences around advanced care planning, hospice perceptions, grief, and emotional processing (8).When clinicians are not aware, respectful, and/or responsive to the health beliefs and cultural practices of patients with serious illness, mistrust, perceptions of discriminatory behavior, and decreased adherence with recommended care often ensue (2,3,7).

Cultural awareness and humility: Before a clinician can strive for culturally responsive care, they first must foster cultural awareness and humility within. This usually requires self-reflection and introspection. For example, many clinicians may have their own notions of what constitutes a “good death.” These notions may have been partially formulated by anecdotal wisdom past on within their specialty or from the broader cultural assumptions of western health care systems – e.g., patients want to die at home. Clinicians must be aware of these biases before they can successfully respond to the patient’s beliefs on what constitutes a “good death” for them.  Another aspect of cultural humility is that we exercise respectful curiosity when engaging with patient/families (5,8,9,11). In other words, we recognize that cultural and religious groups are not monolithic, but usually multi-dimensional (8). Therefore, we must avoid assumptions or stereotypes about a patient’s cultural and ethnic background and instead utilize patient-centered inquiries like “Tell me more about…” to elicit their hopes, illness understanding, and cultural values (4,10). The patient should be seen as their own expert on their culture and lived experiences. Borken et al offers the HUMBLE acronym to bolster skills in cultural humility (12).

  • Humble: explore the patient’s beliefs and values rather than assuming you know them. Utilize the IDT to address unmet cultural, spiritual, or religious needs rather than managing them all by yourself.
  • Understand your own cultural background and biases and how they may affect your clinical care.
  • Motivate yourself to learn more about the patient’s background.
  • Begin now to incorporate each patient’s unique background into future care plans.
  • Life-long commitment to learning about different cultures.
  • Emphasize respect for belief systems and utilize a shared decision-making model, not a unidirectional, clinician decision-making model, to elicit and incorporate those beliefs.

A clinical framework to promote culturally responsive care: Cain et al promotes the ABCDE acronym to guide how we interview patients and families and gain better insight into their cultural values (4)

  • Attitudes: Inquire about how much information the patient wants to know about their underlying illness, their prognosis, and their care goals (13). In some cultures, patients may defer to others to make medical decisions, especially when they are terminally ill.  Some may not want to know their prognosis, be informed about the future care plan, nor their end-of-life (EOL) care options (13).  
  • Beliefs “What cultural, spiritual, or religious beliefs are important to you as face this serious illness?” See Fast Fact #19, Fast Fact #216, and Fast Fact #274 for more information on how to ask about spirituality and culture. This information can be instrumental to good care.  For example, in some cultures, patients might defer the use of “normative” palliative medications (e.g., opioids) even at the end of life to avoid sedative effects that could interfere with performing prayers or interacting with faith leaders (14).
  • Context: Inquire what language they would prefer their medical information be shared and provide medical interpreters as appropriate (see Fast Fact #154). Beyond this though, we should strive to understand more than just the patient’s illness or clinical presentation, but rather who they are as a person, who supports them, and what’s important to them. In a clinical sense, clinicians should contextualize their clinical recommendations. For example, instead of asking the patient and/or family, “If you got critically ill would you want us to do everything to prolong your life?” we should contextualize the clinical situation, the patient’s values, their personhood, and explain what therapies we think will help them vs what therapies would only hurt them moving forward.
  • Decision making style: How does the patient want health decisions to be made? Who do they want involved? Who do they want to be present when major serious illness discussions are needed? Some may prefer their faith leaders be present; some may prefer that their biological family not be present; some decisional patients may not want to be present (15-19). Do not assume you know the preferences of a capacitated patient until they express them to you. Their decision-making preferences may even conflict with what their loved ones at the bedside are advocating for. 
  • Environment: Identify if there are local community organizations, interpreters, or faith leaders to support the patient and/or their family (18). Chaplains can be a wonderful resource to help connect patients when they are seriously ill with their community and religious leaders (14,18).   

References

  1. Passel and Cohn. U.S. Population Projections: 2005-2050. Pew Index. Accessed August 2023.
  2. Nelson KE, Wright R, Fisher M, Koirala B, Roberts B, Sloan DH, Wu DS, Davidson PM. A Call to Action to Address Disparities in Palliative Care Access: A Conceptual Framework for Individualizing Care Needs. J Palliat Med. 2021 Feb;24(2).
  3. Rosa WE et al. Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review. Palliat Med. 2023 Apr;37(4):460-474.
  4. Cain CL, Surbone A, Elk R, Kagawa-Singer M. Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making. J Pain Symptom Manage. 2018 May;55(5):1408-1419.
  5. Yeager KA, Bauer-Wu S. Cultural humility: essential foundation for clinical researchers. Appl Nurs Res. 2013 Nov;26(4):251-6.
  6. Stubbe DE.  Practicing cultural competence and cultural humility in the care of diverse patients. Focus (Am Psychiatr Publ) 2020; 18(1):49-51.
  7. National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care, Third Edition, 2013.
  8. Samari G, Alcalá HE, Sharif MZ. Islamophobia, Health, and Public Health: A Systematic Literature Review. Am J Public Health. 2018 Jun;108(6).
  9. Carey E. Sadighian M. Sudore R. Cultural aspects of palliative care. UpToDate. Accessed August 2023.
  10. Foronda C. A Theory of Cultural Humility. Journal of Transcultural Nursing. 2020 3(1) 7-12.
  11. Tervalon M, Murray-García J. Cultural humility versus cultural competence: a critical distinction in defining physician training outcomes in multicultural education. J Health Care Poor Underserved. 1998 May;9(2):117-25.
  12. Borkan JM, Culhane-Pera KA, Goldman RE. Towards cultural humility in healthcare for culturally diverse Rhode Island. Med Health R I. 2008 Dec;91(12):361-4.
  13. Menon S, Entwistle VA, Campbell AV, van Delden JJM. Some Unresolved Ethical Challenges in Healthcare Decision-Making: Navigating Family Involvement. Asian Bioeth Rev. 2020 Mar 5;12(1):27-36.
  14. Madni A, Khan S, Bilbeisi T, Pasli M, Sakaan F, Lahaj SM, Patel R, Kamal AH. Top Ten Tips Palliative Care Clinicians Should Know About Caring for Muslims. J Palliat Med. 2022 May;25(5):807-81.
  15. Elk R, Emanuel L, Hauser J, Bakitas M, Levkoff S. Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community. Health Equity. 2020 Mar 26;4(1):52-83.
  16. Cloyes KG, Hull W, Davis A. Palliative and End-of-Life Care for Lesbian, Gay, Bisexual, and Transgender (LGBT) Cancer Patients and Their Caregivers. Semin Oncol Nurs. 2018 Feb;34(1):60-71.
  17. Rosario-Ramos L, Suarez K, Peña-Vargas C, Toro-Morales Y, Costas-Muñiz R, Castro E, Torres S, Torres-Blasco N. Important End-of-Life Topics among Latino Patients and Caregivers Coping with Advanced Cancer. Int J Environ Res Public Health. 2022 Jul 23;19(15):8967.
  18. Patel RV, Patel VR, Patel DR, Kamal AH, Nelson JE. Top Ten Things Palliative Care Clinicians Should Know About Caring for Hindus. J Palliat Med. 2020 Jul;23(7):980-984.
  19. Rosca, A., Karzig-Roduner, I., Kasper, J. et al. Shared decision making and advance care planning: a systematic literature review and novel decision-making model. BMC Med Ethics 24, 64 (2023).

Version History:  Originally edited by Sean Marks MD; first electronically published in January 2024.
Conflicts of Interest: None to report.
Author Affiliations: University of Tennessee Health Science Center/Le Bonheur Children’s Hospital; Memphis TN.

Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School) with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW). The authors of each individual Fast Fact and the Fast Fact and Concepts editors are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.

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