Professional organizations such as the International Association for Hospice and Palliative Care (IAHPC) and the National Hospice and Palliative Care Organization (NHPCO) advise that all patients in critical care settings should have access to palliative care to alleviate and prevent suffering, and to improve quality of life. Unfortunately, disparities in access and outcomes persist in hospice and palliative care despite efforts to integrate them more seamlessly into health care systems.
Health disparities are "systematic, plausibly avoidable health differences ... associated with intentional or unintentional discrimination or marginalization ... that adversely affect socially disadvantaged groups."
Sociodemographic characteristics such as race and ethnicity, socioeconomic status (including income and insurance status), gender, sexual identity, and geographic location contribute to disparities in health outcomes. These disparities include the differential provision of acute vs. comfort care at the end of life among different patient populations, variations in symptom management (such as pain, depression, anxiety, sleep disturbance, nausea, and vomiting), divergent management of code status among some patient groups, and the unequal utilization of advance care planning and directives.
For instance, a population-based study found race and ethnicity to be associated with a higher likelihood of receiving aggressive interventions at the end of life in patients with metastatic cancer. A study evaluating more than 300 thousand adults with cancer from 2007 to 2019 in the Medicare and Medicaid services database found that despite having received palliative care consultation during their initial hospitalization, Black veterans who were hospitalized for heart failure may be more likely to have burdensome care transitions within six months of discharge compared with veterans that are White. Ineffective patient-clinician communication among patients of diverse backgrounds is reported to contribute to a lack of meaningful discussions about treatment goals and care preferences, especially at the end of life.
What accounts for the limited reach and utilization of hospice and palliative care services?
Globally, 42 percent of countries do not have a functional palliative care delivery system. Furthermore, the lack of a permanent address for patients with unstable housing creates additional barriers to access due to social stigma, absence of a usual source of care, and isolation from family and social support systems.
Access to palliative and other health care requires several necessary conditions. First, insurance coverage is vital to support entry into health care systems, though there are regional differences in coverage and variability in private insurance. Second, access requires a source for health care services (including pharmacies, preventive care, emergency services, and subspecialty care). Third, the expedience of care is vital for insuring timeliness of referral so that appropriate care decisions can be made. Fourth, access relies upon an appropriately trained health care workforce, including a primary care clinician, that is cognizant of the historical mistreatment of marginalized groups by the health care system and the resultant lack of trust.
Without these foundations, patients and their caregivers may not have the opportunity to take advantage of hospice or palliative care. Limited utilization may also be due to differences across diagnoses and care settings (including nursing homes), variations in the coordination and quality of palliative care, and differences in the clinical outcomes of palliative care consultations, such as symptom management and communication.
Health disparities in palliative care can deeply affect the lives and deaths of patients. One of our topic editors, Dr. Christine Nevins-Herbert, recently cared for an older Black female patient in an inpatient hospice unit. This patient was diagnosed with metastatic cancer for which cancer-directed treatment was no longer indicated. When she walked into this patient’s room to meet her and her family for the first time, the patient said, “I don’t trust you.” Her family seemed embarrassed and quickly added, “Mama, don’t be rude.” Rather than take offense, Dr. Nevins-Herbert thanked the patient for her honesty and asked if she would elaborate and tell her more. She went on to explain her perspective: “I don’t trust White doctors. As far as I can tell, you’d rather I were dead. I didn’t want to come here – they told me it was the only option.”
Dr. Nevins-Herbert knew she was not going to dismantle the legacy of oppression and mistreatment faced by marginalized communities, nor was she going to magically win her trust. What she could do was try to empathize with the patient to better communicate and understand what kind of care she was hoping for at the end of her life. The family shared that they didn’t want their mother to be overmedicated and didn’t want anything done that would hasten her death. The team was able to honor these wishes. Other patients may have preferred more aggressive symptom management to alleviate suffering, but the team had to remind themselves that the definition of a “good death” was for the patient to decide, not the health care team. Their job was to meet this patient and family where they were and provide exceptional care while honoring their wishes.
Ten Strategies to Help Reduce Health Disparities in Hospice and Palliative Care
There is no one size fits all approach to reduce health disparities or mitigate against their negative effects. Reducing health disparities in hospice and palliative care requires a multi-pronged approach that addresses individual- and system-level barriers. Here are ten strategies to consider.
- Learn and practice cultural humility to gain greater understanding of the diverse experiences, values, social stressors, vulnerabilities, biases, and obstacles that contribute to health disparities.
- Share information with your patients on how to talk about what matters most to them. The Conversation Project offers a variety of handouts on how to have a say in your health care, choose a health care proxy, and talk with your health care team.
- Recognize diversity within racial and ethnic groups, including socioeconomic heterogeneity.
- Explore the cultural, linguistic, religious, and spiritual preferences of patients.
- Encourage active participation from families and caregivers to improve communication and mutual understanding.
- Provide patient education that is culturally appropriate, interactive, and engaged with the patient's community.
- Use multidimensional interventions to increase the use of hospice and palliative care, including directives for their use in safety net hospitals caring for patients with serious illness.
- Establish meaningful community-based relationships to help expand support networks for underrepresented patients, including mechanisms to increase involvement.
- Support efforts to diversify the health care workforce.
- Embed health equity and social justice goals into culture, policies, and practices and monitor progress with best-practice accountability metrics.
Palliative care teams are trained and skilled at seeing patients as diverse individuals, practicing cultural humility, and advocating for the needs of patients and their families. At the same time, end-of-life care is not immune to the wider health disparities that exist across the lifespan. We must work to practice the ten steps above while advocating for research on health disparities in the health care system.
