Disparities in diversity, equity and inclusivity are widespread in American society and the United States healthcare system. Receipt of advance care planning (ACP) education and end-of-life care (EOL) is no exception. Overwhelmingly, evidence from large national datasets and research studies establishes gaps and disparities in the completion rate of advance directives (ADs) in Black populations and the underuse of EOL palliative care and hospice services among Blacks with serious illness and near the EOL. There is limited national and state survey data related to EOL care issues. However, surveys and reports support disparities in formal ACP and access to palliative care and hospice services in the Black population. Recent national reports regarding ADs and palliative and hospice utilization among Blacks conclude the following:
- 2007-2011 – Nationwide Inpatient Sample of stroke admissions showed that ethnic minorities had lower odds of receiving palliative care in minority hospitals or any hospital stratum compared to whites;
- 2012 – National Health and Aging Trends Study of community-dwelling Medicare beneficiaries reported that 23% of non-Hispanic Blacks versus 73% of whites responded “yes” to the question of having a written ACP;
- 2013 – National Health Styles Survey reported that only 17% of non-Hispanic Blacks adults completed an AD compared to 31% of whites;
- 2015 – National Center for Health Statistics reported that 33% of non-Hispanic Black patients died in hospitals compared to 23% of white cancer patients;
- 2016 – Retrospective cohort study of Medicare beneficiaries showed that non-Hispanic Blacks are more likely to have 3.4 live discharges or transitions from hospice compared to 2.9 in whites (Bazargan & Bazargan-Hejazi, 2021).
According to the National Academy of Medicine, ACP is an essential facilitator of high-quality EOL care. ACP is a healthcare decision process that includes patient-provider discussions and planning for EOL to communicate care preferences if one is unable to do so. Informal ACP involves discussions with family members and loved ones about EOL care preferences. However, formal ACP includes completing legal documents such as advance directives to communicate EOL preferences to healthcare providers. Benefits of ACP include a better quality death, higher rates of hospice and palliative care, lower levels of emotional distress for bereaved loved ones, and lower healthcare expenditures at EOL. In addition, individuals who participate in ACP generally receive less aggressive care and higher utilization of palliative care and hospice services (McDonnell & Idler, 2021). ADs may consist of one or more of the following:
- Healthcare Proxy – also referred to as a “healthcare surrogate” or “durable medical power of attorney” is considered the most important legal component of ACP. An individual selects and appoints a healthcare agent or proxy to make medical decisions if an individual is unable to express preferences about medical treatment.
- Living Will – is a written expression of an individual’s treatment preferences in certain medical circumstances. It may include wishes for life-sustaining treatments, including providing food and water and using machinery or medical equipment to sustain life.
- Organ and Tissue Donation – may be included in an AD indicating preferences regarding organ or tissue donation at the time of death.
- Do Not Resuscitate (DNR) Order – this order communicates wishes to hospitals or other healthcare entities not to attempt to restore the heart to a normal rhythm if it stops or is beating unsustainably using CPR or other life-support methods.
- Do Not Intubate (DNI) – like the DNR, a DNI communicates to healthcare staff that an individual does not desire mechanical ventilation to sustain life.
- Non-hospital DNR Order – this order alerts emergency medical staff of an individual’s wishes not to restore their heartbeat or breathing if not hospitalized.
- Physician Order for Life-Sustaining Treatment (POLST) and Medical Orders for Life-Sustaining Treatment (MOLST) – typically executed near the end of life or during a critical illness, they guide healthcare professionals on how to act in the event of an emergency. POLST and MOLST forms serve as a medical order and are in addition to an AD (NIA, 2018).
The terms “palliative care” and “hospice care” are often used interchangeably. However, using the terms interchangeably is inaccurate and misleading. According to the Center to Advance Palliative Care, palliative care is specialized medical care for individuals with serious illnesses focusing on improving life quality by addressing the physical, emotional and spiritual needs of patients and their families. The four pillars of palliative care include 1) options for evidence-based curative and rehabilitative medical interventions; 2) open, collaborative discussions with patients and families; 3) sharing of truthful information; and 4) cultural sensitivity related to culture, race, ethnicity, spiritual beliefs and customs regardless of social class and citizenship. The goal of palliative care is to improve the life quality for the patient and family, and care focuses on relief from symptoms and the stress of the disease. Palliative care is appropriate at any age and during any stage of serious illness. However, the best outcomes of palliative care occur when care begins at the time of diagnosis. Finally, palliative care does not require the cessation of curative treatment (Bazargan & Bazargan-Hejazi, 2021).
Hospice care is specialized palliative care for patients with a terminal illness in which the likelihood of increased quality of life with medical interventions is extremely low. Palliative care is available during the receipt of hospice care when all efforts focus on the quality of the patient’s remaining life and the quality of death. Specially trained multidisciplinary teams provide EOL care focused on supporting patients with a terminal illness to live as fully and comfortably as possible. Hospice services range from palliation of pain and symptoms to bereavement care. Typically, hospice care occurs in the home and is not a substitute for family and friends but a support system to aid those caring for a loved one at home (Bazargan & Bazargan-Hejazi, 2021).
Common themes in the literature explaining disparities in ACP, completions of ADs, and underuse of palliative and hospice care among Blacks include distrust of the health system, spiritual beliefs that conflict with ACP, and poor health literacy. Centuries of slavery and discrimination explain high mistrust levels toward U.S. healthcare institutions in the Black community. Past and present systemic racism contributes to poor health, poor outcomes, poor health status, poor quality healthcare and a lingering mistrust of healthcare. Additionally, unethical medical experimentation and research practices on Blacks may have left a permanent perception by Blacks that there is an inherent risk of deception and exploitation by healthcare institutions. Mistrust of the medical community and its institutions is multifaceted. Literature reveals that lower socioeconomic status (SES), poor quality of life and financial insecurity, including lack of insurance and healthcare access, contribute to Black mistrust in the healthcare system (Bazargan & Bazargan-Hejazi, 2021).
Religion and religious institutions remain a vital component in the lives of Blacks in the U.S. Religiosity and spirituality among older Black adults are reflected in church attendance and congregational involvement. Researchers tend to believe that reticence among Blacks regarding ACP and EOL care is attributable to differences in religious affiliation, behaviors or attitudes. However, multiple studies do not support or account for such disparities based on measurements of faith, religiosity or religious affiliations. The single factor that may connect religiosity to ACP conversations is a strong belief that God determines the place and time of death. However, this religious tenet is no longer a subjective predictor of the odds of Blacks or whites engaging in ACP discussions, as researchers find no statistical significance in studies (Bazargan & Bazargan-Hejazi, 2021).
Cultural competence in healthcare involves providing quality care to diverse patients and tailoring discussions and treatments that are culturally and linguistically sensitive. The National Adult Literacy Survey (NALS) reports that almost 50% of adults in the U.S. lack the literacy skills to understand health and act on health information. Evidence suggests that Blacks have a limited baseline knowledge of ACP and generally receive less information about ACP during interactions with healthcare providers. The health needs of Blacks 50 years and older are the same as the needs of any other group at the end of life. Research studies report that Blacks are more likely to prefer life-sustaining interventions, even when treatments are medically futile. While Blacks may undergo more life-sustaining treatments, research does not support this choice as a preference for patients or their families. ACP focuses on uncertainty, and patient-provider discussions can be very challenging for providers. The provider may have uncertainty about the prognosis or disease trajectory or be uncomfortable having EOL discussions. In that case, clinician uncertainty adds to the burden of ACP and causes patient indecision, resulting in the continuation of life-threatening treatments. Decisional uncertainty or delays by patients may reflect a lack of understanding and hesitation to make treatment decisions. If uncertainty results from information being too complex to understand or mistrust of the healthcare provider, ACP discussions may fail to facilitate clinician efforts to promote ACP and ADs (Melhado & Bushy, 2011).
Disparities in ACP and options for EOL care for Black individuals and communities result in poorer quality of life and death for non-Hispanic Blacks and other minority groups. Patients and loved ones experience physical and psychological pain, mental anguish, emotional fatigue and stress, a lack of support when death occurs, higher death rates in hospitals or other facilities, aggressive treatments with limited utility and increased healthcare costs. Furthermore, palliative and hospice care are more likely to occur near the end of life, limiting the benefits of EOL care (Bazargan & Bazargan-Hejazi, 2021). Recommendations for healthcare systems and healthcare providers to improve disparities in ACP and EOL care for all patients and families include:
- Adoption of Universal Health Literacy Precautions to reduce the complexity of healthcare, improve understanding of health information, and support patients at all literacy levels (https://www.ahrq.gov/health-literacy/improve/precautions/index.html).
- Development of faith-based ACP/EOL programs with church leaders and congregants to build capacity to deliver ACP/EOL education that uses an approach that blends faith beliefs and death and dying (https://www.phi.org/about/impacts/providing-community-led-faith-based-support-to-people-with-advanced-illnesses-and-their-caregivers/).
- Continuous cultural competency/humility training to increase individual awareness and appreciation of cultural diversity and highlight skills to work effectively across cultures (https://registrations.publichealthpractice.org/Training/Detail/211).
- Become an advocate for all patients by increasing individual skills, knowledge and competency through certification in ACP (https://respectingchoices.org/types-of-curriculum-and-certification/).
Kelva Edmunds-Waller, DNP, RN, CCM, has over 38 years of nursing experience, including over 20 years in leadership roles. She has clinical experience in acute care, home health, infusion therapy, public health, managed care and long-term acute care. Kelva recently earned a DNP degree at Loyola University New Orleans. She serves as president of the Central Virginia Chapter of CMSA and is a member of the CMSA editorial board.
Bazargan, M. & Bazargan-Hejazi, S. (2021). Disparities in palliative and hospice care and review of recent literature. American Journal of Hospice & Palliative Medicine, 38(6), 688-718. https://doi.org/10.1177/1049909120966585
Catlett, L., and Campbell, C. (2021). Advance care planning and end of life care literacy initiatives in African American faith communities: A systematic integrative review. American Journal of Hospice & Palliative Medicine, 38(6), 719-730. https://doi.org/10.1177/1049909120979164
Melhado, L., & Bushy, A. (2011). Exploring uncertainty in advance care planning in African Americans: Does low health literacy influence decision making preference at end of life. American Journal of Hospice & Palliative Medicine 28(7), 495-500. http://doi.org/10.1144/1049909110398005
National Institute on Aging. (2018). Advance care planning: Advance directives. https://www.nia.nih.gov/health/advance-care-planning-health-care-directives