Chapter 14: End-of-life Care

Background

Death and dying are inevitable. health care providers (HCPs) should be prepared for this process with the proper tools to provide holistic end-of-life (EOL) care to all patients. EOL care is not limited to pain and symptom management; it also includes the provision of psychological, social, spiritual, and practical support, which may vary between racialized patients (Orlovic et al., 2019).

Barriers to End-of-life Care for Racialized Patients

• Patients with limited English proficiency often face communication challenges (please refer to communication chapter for details).
• Racialized patients are often offered inadequate pain management (please refer to pain chapter for details).
• A study by Orlovic et al. (2019) discovered that patients from minority groups are more likely to die in a hospital setting and have more intensive treatments than White patients.
• The study by Orlovic et al. (2019) also discovered that culturally diverse individuals are less likely to complete advance directives than White individuals. Advanced care plans allow individuals to have a voice in their EOL care decisions (Orlovic et al., 2019). This finding implies that culturally diverse individuals receive less support and information regarding EOL care planning.
• The core values of palliative care, such as pain management, viewing death as a normal process, patient autonomy, not hastening or prolonging patient death, and providing family support do not align with all cultures (Six et al., 2020).
• Misconceptions regarding what palliative, hospice, and EOL care are can result in patients and families choosing to forgo these services (Martin & Barkley, 2016).
• In their research, Funnell et al. (2021) discovered that Indigenous people spent more time in hospital and died in hospital more often than non-Indigenous people. They also found inequities in home care services and physician visits during EOL care (Funnell et al., 2021). For Indigenous people, it is essential to have family, community, and elders present for EOL care. This is not always possible if the individual dies in an acute care setting (Funnell et al., 2021).

Culturally Responsive Practice Points for Health Care Providers

• Ensure all patients in the hospital have the necessary information needed to complete a My Voice document. Encourage families within the community to complete advance care directives.
• Be understanding of the different cultural beliefs surrounding EOL care and ensure the patient and their preferences are included in decision making (Martin & Barkley, 2016). Furthermore, do not make assumptions or stereotypes based on a patient’s ethnic background. Always ensure the patient’s voice is heard (Six et al., 2020).
• Work to achieve cultural competence in palliative care by having self-awareness of your own values and being open to different values (Six et al., 2020). Seek educational opportunities to learn and grow with cultural competence and put knowledge into practice (Six et al., 2020).
• When caring for Indigenous people, incorporate the medicine wheel (physical, mental, emotional, and spiritual) in EOL care (Anderson & Woticky, 2018).
• Do your best to provide patients and families with space to perform spiritual and/or religious ceremonies during EOL. For example, be aware of rooms available in acute care facilities for smudging, praying, rituals, or other needs to accommodate patients and their families.

There is no universal way to care for someone who is dying. It is a very individual process that should be treated as such. It is difficult to determine the best EOL care for each patient based on their culture alone. That is why HCPs are highly encouraged to take the time to build a relationship with each patient and family to determine the best plan of care.

References

Anderson, M., & Woticky, G. (2018). The end of life is an auspicious opportunity for healing: Decolonizing death and dying for urban Indigenous people. International Journal of Indigenous Health, 13(2), 48–60. https://doi.org/10.32799/ijih.v13i2.32062

Funnel, S., Walker, J., Letendre, A., Bearskin, R., Manuel, D., Scott, M., Spruin, S., & Tanuseputro, P. (2021). Places of death and places of care for Indigenous Peoples in Ontario: A retrospective cohort study. Canadian Journal of Public Health, 112, 685–696. https://doi.org/10.17269/s41997-021-00482-y

Martin, E. M., & Barkley Jr, T. W. (2016). Improving cultural competence in end-of-life pain management. Nursing 2022, 46(1), 32–41. DOI: 10.1097/01.NURSE.0000475480.75266.9a

Orlovic, M., Smith, K., & Mossialos, E. (2019). Racial and ethnic differences in end-of-life care in the United States: Evidence from the Health and Retirement Study (HRS). SSM – Population Health, 7, 100331. https://doi.org/10.1016/j.ssmph.2018.100331

Six, S., Bilsen, J., & Deschepper, R. (2020). Dealing with cultural diversity in palliative care. British Medical Journal Supportive & Palliative Care, (0), 1–5. http://dx.doi.org/10.1136/bmjspcare-2020-002511