Abstract:
The COVID-19 pandemic brought to light significant health disparities in illness and death due to a person’s race, ethnicity, and socioeconomic status. Also, those factors cause significant inequities in access to palliative and end-of-life care that remain largely unaddressed. The quality of care people receive once they are given a life-threatening diagnosis or as they approach the end of their life depends upon race, ethnicity, socioeconomic status, and who they love. Such disparities in treatment are unconscionable and must be addressed. They warrant serious attention from policymakers and clinicians as well as focused efforts to find solutions.
Key Words:
Health equity, health disparities, end-of-life care, palliative care, hospice care, health inequities, access, lack of access
While the COVID-19 pandemic brought to light significant health disparities in illness and death due to a person’s race, ethnicity, and socioeconomic status, those factors also cause significant inequities in access to palliative and end-of-life care that remain largely unaddressed today.
The quality of care people receive once they are given a life-threatening diagnosis, or as they approach the end of their life largely depends upon their race, their ethnicity, their socioeconomic status, and who they love (Perry et al., 2021). These disparities in treatment at such vulnerable points in a person’s life are unconscionable and must be addressed (Perry et al., 2021). They warrant serious attention from policymakers and clinicians, as well as focused efforts to find solutions.
Racial and Ethnic Differences in Palliative and Hospice Care
Palliative and hospice care offer many benefits to patients, their families, and society at large. Yet Black and Hispanic patients are not afforded the same access to these services as are White patients.
Palliative care is “specialized medical care that focuses on giving patients relief from pain and other symptoms of a serious illness, no matter what the patient’s diagnosis or stage of disease” (Mayo Clinic, 2022).
“Such care has been shown to improve the quality of life for seriously ill patients and their families, save money, and even extend a patient’s life” (Meier, 2011).
In a 2019 cohort study in the United States of more than 600,000 individuals with metastatic prostate, lung, colon, and breast cancer, patients treated at a “minority-serving hospital” (defined as a hospital in the top decile in terms of the proportion of Black and Hispanic patients for each cancer type) were 33% less likely to receive palliative care than patients in other hospitals (Cole et al., 2019). Other studies show similar disturbing racial disparities in the provision of palliative care (Mary Anne Liebert, Inc., 2013).
Similar racial and ethnic inequities exist when it comes to accessing hospice care and are compounded when people live in poverty. This is not surprising because when people have intersecting identities that cause health disparities, such as being poor, Hispanic, and/or LGBTQ+, this multiplies their disadvantage as they face serious illness or the end of their life.
Hospice care consists of services provided by healthcare professionals who maximize comfort for a person who is terminally ill and whose doctor believes they have six months or less to live. Hospice care reduces a patient’s pain, helps manage their symptoms, and assists with their personal care and hygiene. It also supports the patient’s family by helping them with the cost of care and providing respite care to give family caregivers a break (Vitas Healthcare, 2022).
‘Black patients are significantly less likely to access hospice care in the final six months of their lives than are White patients.’
Recent research has found that Black patients are significantly less likely to access hospice care in the final six months of their lives than are White patients (Ornstein, 2020). They also are “more likely to experience intensive care—such as hospitalizations, emergency department visits and aggressive treatments—at the end of life than their White peers” (Perry et al., 2021).
Black patients with conditions such as lung cancer or trauma also experience the end of their lives differently than White patients. Black patients with lung cancer are more likely to undergo mechanical ventilation than White patients, for example. Moreover, Black patients with trauma are more likely to experience highly invasive procedures and face physician- and systems-based biases compared with White patients (Diefeldt, Knopf, & Jackson, 2021).
Another issue contributing to racially disparate end-of-life care is that hospice care has traditionally been provided to those with cancer but not to those with end-stage kidney disease. End-stage kidney disease, an illness that affects Black and Latino people at much higher rates, can produce symptoms as severe as those of cancer, but such patients are less likely to receive this type of high-quality end-of-life care (Wachterman et al., 2016).
Equally troubling, “when addressing end-of-life matters, physicians offer less information about diagnosis, prognosis, and treatments to Black patients” (Perry, et al., 2021). This lack of information sharing with Black patients and their families can lead to care that is inconsistent with patient values and can delay treatment. It also can delay a patient’s referral to hospice or palliative care services, preventing them from accessing helpful pain relief and comfort care as they deal with a serious illness and its effects.
Most concerning, racial differences in access to hospice care create a poorer end-of-life experience on many levels, research shows (Wachterman & Sommers, 2021). This experience may include more pain (Kamal et al., 2017), greater financial distress (Tucker-Seeley et al., 2015), greater caregiver burden (especially among women) (Wachterman & Sommers, 2006; 2021), and ultimately, worse family-reported experiences with death for lower-income populations and racial or ethnic minorities with serious advanced illnesses. Thus, race and poverty affect one’s end-of-life care as Black patients and those with low-income experience less support and more stress because of their identities and financial situation.
Palliative and hospice care reduce healthcare spending for the sickest and most costly patient populations by helping patients get the care they need to avoid unnecessary trips to the emergency room, as well as hospital stays. The failure to provide equitable access to this care is a missed opportunity not only for patients and their families but for society as well.
Socioeconomic Differences in Hospice Care
Poverty also is a significant driver of poor end-of-life care. It affects a person’s eligibility to receive hospice care, as well as the number of prescriptions a patient can obtain to ease their pain. In this country, people with low-income do not receive the quality of care at the end of their lives that people of greater means do.
Though most states cover hospice care for those near the end of life, not all do. Some, sadly, have eliminated hospice benefits in the past due to budgetary constraints (Wachterman & Sommers, 2021). Some states also limit the number of prescriptions patients on Medicaid can receive, hindering clinicians’ ability to manage pain and other symptoms of illness at the end of life (Wachterman & Sommers, 2021). Other groups of seriously ill patients, such as the two to three million adults with low income in states that did not expand Medicaid, are ineligible for federally subsidized insurance (Sommers, 2020).
Barriers for Those Identifying as LGBTQ+
LGBTQ+ older adults have experienced significant barriers to receiving equitable end-of-life services due to societal discrimination, prejudice, and hostility (Kings College London, & The University of Nottingham, 2016). These elders are at increased risk of isolation and marginalization (LGBT Foundation, 2022) compared to their heterosexual peers at the very time in their lives when they are most vulnerable and in need of support. They may also experience depression, feel alienated from healthcare and aging services, and be forced to hide their identity or support network, missing out on crucial parts of end-of-life care (Hospice Care of the Lowcountry, 2022). Many in the LGBTQ+ community fear discrimination at the end of their lives.
Some states, sadly, have completely eliminated hospice benefits in the past due to budgetary constraints.
One report found that 80% of LGBTQ+ older adults concealed their sexual orientation when entering long-term care facilities, and many of those who choose to age at home express anxiety over allowing caretakers into their homes (SAGE, 2019). A 2018 survey of 865 hospice professionals reinforces these fears. Forty-three percent of these professionals confirmed that they had directly observed discriminatory behavior toward LGBTQ+ patients (Candrian & Cloyes, 2021).
When seeking hospice care, those identifying as LGBTQ+ worry about whether their sexual orientation and gender identity will be accepted and embraced (LGBT foundation, 2022)—which is of particular concern for those using hospices affiliated with churches or religious organizations. “They may also be concerned about experiencing discrimination from staff or residents in the facility, causing them to wonder whether or not to hide their identity or go back into the closet. They may also fear they will experience isolation, bullying, mistreatment or abuse, all of which contribute to the receipt of poor-quality health care” (Candrian & Cloyes, 2021).
Anxiety exists over whether their healthcare wishes will be ignored or disregarded, and whether their families of choice and their partners will be included in their decision making or be overlooked or excluded. They may question whether the care staff have received training on supporting LGBTQ+ people and how this might affect the quality of care they will receive at the end of their life (Candrian & Cloyes, 2021).
Solutions
Promote Diversity in the Nursing Profession: AARP Foundation and AARP’s Center to Champion Nursing in America have long worked to promote and encourage a diverse nursing workforce at every level, beginning with nursing education to the highest ranks of the profession, as a way to improve health equity for diverse populations. A more diverse nursing profession will improve health equity for seriously ill patients who are Black, Hispanic, or face poverty throughout the life course and as they face the end of their lives. Those who care for people at the end of their lives should ideally reflect the people whom they serve.
Promote Advance Care Planning and Discussion of Treatment Preferences for Black and Hispanic Adults: Efforts should be made to educate and train healthcare professionals to promote advance care planning and discuss treatment preferences for end-of life-care for Black and Hispanic patients before they become ill. These efforts should be delivered in a culturally competent way, in partnership with community health partners (Heath, 2020).
Lower health literacy, (which is heavily influenced by poverty) including less advance care planning, may lead to lower quality end-of-life care. Given that Black and Hispanic individuals are less likely to receive end-of-life care that is aligned with their preferences and less likely to receive hospice services, one way to increase health equity at the end of life is to encourage such people to complete advance care directives (Heath, 2020).
‘A more diverse nursing profession will improve health equity for seriously ill patients who are Black, Hispanic, or face poverty.’
Less than a quarter of Black patients have a completed an advance directive and Black and Hispanic older Americans are less likely than White older Americans to possess advance directives (Huang, Neuhaus, & Chiong, 2016), which is key to assuring that people obtain the care they want at life’s end. A completed advance directive is associated with increased hospice use and fewer unwanted end-of-life procedures (Heath, 2020).
Expand Availability of Hospice and Palliative Care in Underserved Hospitals and Communities: We should expand the availability of hospice and palliative care (Watcherman & Sommers, 2021) in underserved hospitals and communities. The increased use of telemedicine during the pandemic suggests that the same mechanism could be used to bring palliative care specialists to rural areas.
Educate Healthcare Providers About End-of-Life Care for LGBTQ+ People: One of the most important parts of ensuring health equity for LGBTQ+ individuals in end-of-life care is to educate hospice and palliative care clinical staff about the needs of the LGBTQ+ community—including key terminology, family dynamics, and the LGBTQ+ experience. It is critical to understand that family is defined by the patient and may not be a person who is related through genetics or marriage. This distinction is critical when it comes to establishing guidelines for inpatient visitation, advance care planning, and care goals for LGBTQ+ patients (Vossel, 2021). Hospice organizations should start with a review and update of “all organizational policies, marketing materials and job notices to use gender neutral language and demonstrate a more inclusive and welcoming culture for LGBTQ+ team members.” Showing diversity in images or photos will also create a more inclusive environment for patients and staff (Vossel, 2021). These actions are critical to building more lasting relationships and partnerships with local LGBTQ+ services, nonprofit organizations or community centers that can help hospices improve their understanding of the barriers preventing access to care and help dismantle them.
All Palliative Care Plans Must Include a Social Determinants of Health Assessment: The palliative care community must implement a concerted strategy to ensure that when a palliative care plan is developed, it includes a comprehensive assessment of the patient’s social determinants of health. This assessment should include, at a minimum, a robust social history of partner status, family, insurance, employment, and at a minimum, home safety, transportation availability, access to food, and medication (Dahlin, 2021).
Palliative Care Programs Should Perform a Community Assessment: Palliative care programs should conduct a community assessment of the geographic, demographic, and disease-specific communities their program is serving, who it is not serving, and a review of the social determinants of health in these communities. It should also include a review of the community partnerships and collaborations that exist to assess where the gaps are and how those partnerships could be strengthened to serve more people (Dahlin, 2021).
Palliative Care Programs Should Promote Lifting Barriers to the Scope of Practice: “If palliative care programs promoted the lifting of barriers of scope of practice, that would allow all team members to practice at the top of their education and licensure—specifically advanced practice registered nurses, physician assistants, nurses, social workers, pharmacists, and other allied professionals.” These providers often work in rural and community programs and lifting these barriers would increase equitable access to palliative care (Dahlin, 2021).
Every person deserves the right to high-quality care as they approach the end of their life, regardless of where they were born, where they live, the color of their skin, their ethnicity, how much money they have, and who they love. While these recommendations will not ensure that every person in this country has what has come to be known as a “good death,” they will help move us along the path to that goal.
When this article was written, Lisa Marsh Ryerson was president of AARP Foundation in Washington, DC. She is now the executive vice president for Strategy and Special Initiatives at Southern New Hampshire University in Manchester, NH.
References
Candrian, C., & Cloyes, K. G. (2021) “She’s Dying and I Can’t Say We’re Married?”: End-of-Life Care for LGBT Older Adults. The Gerontologist, 61(8), 1197–1201. https://doi.org/10.1093/geront/gnaa186
Cole, A. P., et al. (2019). Association of Care at Minority-Serving vs Non–Minority-Serving Hospitals With Use of Palliative Care Among Racial/Ethnic Minorities With Metastatic Cancer in the United States. JAMA Network Open, 2(2), e187633. doi:10.1001/jamanetworkopen.2018.7633
Dahlin, C. (2021). How to Promote Health Equity in Palliative Care by Collaborating with Nursing. Capc. Retrieved on July 7, 2022, from www.capc.org/blog/how-nurses-can-help-promote-health-equity-in-palliative-care/.
Dierfeldt, D., Knopf, K. & Jackson, L. (2021). Racial Disparities at the End of Life. American Family Physician, 104(4), 346–7. Retrieved July 7, 2022, from www.aafp.org/pubs/afp/issues/2021/1000/p346.html.
Heath, S. (2020). Healthcare Disparities Emerge in End-of-Life Hospice Care Access. Retrieved on July 7, 2022, from https://patientengagementhit.com/news/healthcare-disparities-emerge-in-end-of-life-hospice-care-access.
Hospice Care of the Lowcountry. (2022). Hospice and Palliative Care for the LGBTQ Community. Retrieved July 7, 2022, from https://hospicecarelc.org/hospice-and-palliative-care-for-the-lgbtq-community/.
Huang, I. A., Neuhaus, J. M., & Chiong, W. (2016). Racial and Ethnic Differences in Advance Directive Possession: Role of Demographic Factors, Religious Affiliation, and Personal Health Values in a National Survey of Older Adults. Journal of Palliative Medicine, 19(2), 149–56. doi:10.1089/jpm.2015.0326
Kamal, A. H., et al. (2017). Unmet Needs of African Americans and Whites at the Time of Palliative Care Consultation. American Journal of Hospice and Palliative Care, 34(5), 461–5. doi: 10.1177/1049909116632508. Epub 2016 Feb 16. PMID: 26888883.
Kings College London, & The University of Nottingham. (2016). Hiding who I am. Marie Curie. Retrieved on July 7, 2022, from www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2016/reality-end-of-life-care-lgbt-people.pdf.
LGBT foundation. (2022). End of Life Care. Retrieved July 7, 2022, from https://lgbt.foundation/prideinageing/end-of-life-care.
Mary Ann Liebert, Inc. (2013). Journal of Palliative Medicine, 16(11). DOI: 10.1089/jpm.2013.9468
Mayo Clinic. 2022. Palliative Care. Retrieved July 7, 2022, from www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637.
Meier, D. (2011). Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care. The Milbank Quarterly. doi: 10.1111/j.1468-0009.2011.00632.x
Ornstein, K. A., et al. (2020). Evaluation of Racial Disparities in Hospice Use and End-of-Life Treatment Intensity in the REGARDS Cohort. JAMA Network Open, 3(8), e2014639. doi:10.1001/jamanetworkopen.2020.14639
Perry, L. M., et al. (2021). Racial disparities in end-of-life care between black and white adults with metastatic cancer. Journal of Pain Symptom Management, 61(2), 342–9.e1.
SAGE. (2019). For LGBTQ+ elders, palliative care can alleviate aging’s obstacles. Retrieved on July 7, 2022, from www.sageusa.org/news-posts/for-lgbtq-elders-palliative-care-can-alleviate-agings-obstacles/.
Sommers, B. D. (2020). Health Insurance Coverage: What Comes After The ACA? Health Affairs, 39(3), 502–8. doi: 10.1377/hlthaff.2019.01416
Tucker-Seeley, R. D., et al. (2015). Financial hardship and the intensity of medical care received near death. Psycho-Oncology, 24(5), 572–8. doi:10.1002/pon.3624
Vitas Healthcare. 2022. Hospice Is Not Giving Up. Hospice is Full of Hope. Retrieved July 7, 2022, from www.vitas.com/hospice-and-palliative-care-basics/when-is-it-time-for-hospice/hospice-is-not-giving-up.
Vossel, H. (2021). Hospices Strategize to Improve Care for LGBTQ+ Patients. Hospice News. Retrieved on July 7, 2022, from https://hospicenews.com/2021/07/08/hospices-deepen-staff-education-and-marketing-efforts-to-improve-care-access-for-lgbtq-patients/.
Wachterman, M. W., & Sommers, B. D. (2006). The impact of gender and marital status on end-of-life care: evidence from the National Mortality Follow-Back Survey. Journal of Palliative Medicine, 9(2), 343–52. doi: 10.1089/jpm.2006.9.343. PMID: 16629564
Wachterman, M. W., et al. (2016). Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses. JAMA Internal Medicine, 176(8), 1095–1102. doi:10.1001/jamainternmed.2016.1200bid
Wachterman, M. W., & Sommers, B. D. (2021). Dying Poor in the US—Disparities in End-of-Life Care. JAMA, 325(5), 423–4. doi:10.1001/jama.2020.26162
