What do people really want when they confront their last moments? For some patients, it may mean maintaining their own medical autonomy. For others, it may mean having family closely involved, continuing treatment for as long as possible, or following religious and cultural traditions. This then raises an important ethical question for hospice care: physicians must have an understanding of their patients’ cultural background to provide the best end-of-life care.
Patients from many backgrounds may have differing opinions on illness and death. According to the American Psychological Association (APA), “culture contributes to differences in attitudes, preferences, behaviors, perceptions and experiences related to palliative and end-of-life care” [1]. These differences can affect everything from how patients experience pain to whether they are comfortable discussing death.
In some cultures, conversations about death may be considered inappropriate or even harmful. In an interview, Dr. Liberman, executive director of Northwell Health’s Hospice Care Network, explains that death can be a taboo subject in some communities. She describes how, in her Jamaican culture, hospice can be associated with “giving up” on a loved one, while some South African beliefs hold that speaking about death can cause it to happen sooner [2]. She also says, “Japanese and Iranian cultures may also avoid direct discussions about death altogether” [2]. Furthermore, some patients may have the belief that the timing of death should be determined by God rather than by physicians [2]. These beliefs can create misunderstanding or mistrust between patients, families, and healthcare providers and should be addressed in hospice care.
Culture also influences medical decision-making. A study comparing older adults in the United States and South Korea found that Americans often use advance care planning to preserve individual autonomy, while Korean older adults may prefer delegating decisions to their adult children [3]. Neither approach is inherently more ethical, but they are simply different. For some patients, autonomy means making decisions independently, while for others, it means involving family members.
These cultural differences matter because they can contribute to differences in how people use end-of-life care. Research among Medicare beneficiaries with dementia has found differences in hospice use, hospitalizations, and treatment preferences across racial and ethnic groups [4]. The APA similarly notes that some racial and ethnic minority groups, including African Americans, Latinx individuals, and Asians, may prefer more aggressive treatment at the end of life [1]. These differences highlight the importance of recognizing how culture can affect end-of-life decisions. Without culturally sensitive communication, healthcare providers may fail to adequately address a patient’s concerns with hospice care.
Ultimately, physicians must ask more profound questions about their patients to understand their culture and values that may be influenced by their background. What does hospice care mean to the patient? Who should retain autonomy in making medical decisions? What beliefs or concerns shape a patient’s preferences? By having these conversations and being culturally sensitive, providers can address misconceptions while still respecting patient values.
There is no universal definition of a “good” death. To different people with different backgrounds and cultures, it may mean different things. Ethical hospice care means creating spaces for these differences and tailoring treatment to have a patient’s best interest in mind.
Designed by: Michele Sun Reviewed by: Maddie Parr
References
[1] American Psychological Association. (2010). Culturally Diverse Communities and Palliative and End-of-life care. https://www.apa.org/pi/aging/programs/eol/end-of-life-diversity.
[2] Northwell Health. (2022) Understanding Cultural Barriers to Hospice.
[3] Ha, J.-H., Lee, C., & Yoo, J. (2023). Cultural Differences in Advance Care Planning and Implications for Practice. OMEGA - Journal of Death and Dying, 87(3), 838-855. https://doi.org/10.1177/00302228211029502.
[4] Lin P, Zhu Y, Olchanski N, et al. (2022). Racial and Ethnic Differences in Hospice Use and Hospitalizations at End-of-Life Among Medicare Beneficiaries With Dementia. JAMA Network Open, 5(6), e2216260. https://doi.org/10.1001/jamanetworkopen.2022.16260.
[2] Mwai, Grace W., et al. "Role and outcomes of community health workers in HIV care in sub‐Saharan Africa: a systematic review." Journal of the International AIDS Society 16.1 (2013): 18586.
[3] Mermin, Jonathan, et al. "Mortality in HIV-infected Ugandan adults receiving antiretroviral treatment and survival of their HIV-uninfected children: a prospective cohort study." The Lancet 371.9614 (2008): 752-759.
[4] Ngcobo, Sanele, et al. "Roles, barriers, and recommendations for community health workers providing community-based HIV Care in Sub-Saharan Africa: a review." AIDS Patient Care and STDs 36.4 (2022): 130-144.
[5] Abdullateef, Ridwanullah Olamide, et al. "Community health workers’ commitment to HIV/AIDS control in Africa." Journal of Medicine, Surgery, and Public Health 2 (2024): 100036.
