Racism affects all aspects of health care for Black Americans, including during serious illness and near the end of life. Using information gathered from a literature review and key informant interviews, a team from the Center to Advance Palliative Care (CAPC) explored what goes wrong for Black patients during the course of a serious illness, and how Medicare incentives and requirements could begin to redress these alarming issues.
Disparities in Symptom Management and Communication
Black people are diagnosed with serious illnesses at higher rates than their white counterparts and die at a younger age, yet are less likely to be assessed for pain or receive effective pain management and experience lower-quality clinician communication. For example:
- Physicians are more likely to underestimate the pain of Black patients relative to white patients.
- Black patients with serious illness are more likely to report poor-quality clinician-patient communication. One key informant shared, “A lot of the issues confronting Black patients are rooted in poor communication . . . Doctors are not really taught how to communicate with patients from marginalized groups.”
- Seriously ill Black patients are also less likely than patients of other races to have advance care planning discussions or documents (e.g., often due to the belief that it can result in withheld care due to racial bias).
Palliative care — care provided by specialty medical teams that focuses on providing relief from the symptoms and stress of a serious illness — can help manage symptoms and improve shared decision-making. But access to such care is inequitable. The odds of having a palliative care encounter is one-third lower for Black patients, compared with white patients. Receiving care at hospitals that primarily serve Black patients is associated with significantly lower odds of receiving palliative care.
Moreover, there are currently no requirements or direct incentives in Medicare for providers to attend to pain and symptom management or to support shared decision-making with patients. There is little ability to measure the equitable provision of these services through Medicare claims data, and therefore no way to hold providers accountable.
Additionally, patient experience scores are buried in complex payment arrangements, and most often are based on Consumer Assessment of Healthcare Providers and Systems scores that are completed by only a relatively healthy and small portion of patients, largely excluding those who are sickest and Black or Hispanic.
Preferences for Hospital and Life-Sustaining Treatment
When compared with white patients, Black patients have greater preference for and use more life-sustaining treatments like breathing support, artificial nutrition, dialysis, and cardiopulmonary resuscitation. Several studies also show that Black patients may have a greater desire to spend their last days in the hospital, compared to their white counterparts. This area is not well-studied, but key informants speculate that these preferences may reflect personal or spiritual beliefs or a fear of not receiving valuable treatment due to structural racism and sustained health inequities. They may also indicate greater pressures on Black caregivers that make care at home difficult or impossible.
Despite the fact that people have diverse care preferences, there is a bias in the literature and in Medicare quality measures that death at home, with fewer life-prolonging interventions, is higher-quality care. This assumption is underscored in the structure of the Medicare hospice benefit, which requires beneficiaries to cease curative treatment to receive hospice services and penalizes hospices for using “too much” inpatient care. This can have damaging effects, as illustrated by an interviewee: “When we hear ‘you have to give up curative treatment,’ we think ‘you’re denying me something that you would give to someone else.’”
At the same time, utilization-based quality measures — such as the new "days at home" measure introduced in recent alternative payment models — reinforce this bias to discourage inpatient care. While it is important to reduce avoidable crises that result in acute care, it is crucial to remember that quality does not always equate to a reduction in utilization, particularly for Black patients. As stated by a patient advocate, “For some people, the hospital is the worst place in the world; for others, it is a sanctuary.”
Recommendations to Reduce Suffering and Improve Equity
In its work to advance health equity, the Centers for Medicare & Medicaid Services (CMS) can use its oversight authority and incentive structures to improve quality of care for Black patients during serious illnesses. Some opportunities the team at CAPC identified include:
- Addressing inequitable access to specialty palliative care. CMS can ensure palliative care specialists are available across all hospitals, especially in facilities that care for a high number of Black patients. This could be done by revising hospital conditions of participation or adding an incentive payment, as has been modeled by some private payers.
- Collecting and monitoring data by race and ethnicity. CMS could require or incentivize the collection of data by race and ethnicity by Medicare-certified providers, with appropriate privacy protections. Considerations for an accurate depiction of how people self-identify is also essential. CMS could use those data to assess and address disparities in partnership with hospitals and other providers.
- Standardizing the use of distress assessments in Medicare Advantage. CMS should require standard screening for symptom distress, functional impairment, and caregiver burden. Some private payers use their care managers to screen for distress, then help their members to access palliative care services they might not otherwise receive. In fact, CMS has already required several assessments for Dual Eligible Special Needs Plans, so adding three additional assessments to screen for suffering appears feasible.
- Incentivize meaningful communication and attention to pain and symptoms. Two new patient-reported measures — how much patients felt heard and understood by their care team and whether patients got the help they wanted for their pain — should be prioritized in all Medicare value-based and alternative payment models. Providing financial incentives for the completion of anti-racist communication skills training can also play a part in addressing some of the existing communication disparities.
- Revising the Medicare hospice benefit. CMS could revise the benefit to address Black patients’ preferences by allowing concurrent curative care in hospice, raising limits on the use of inpatient hospice days, targeting additional reimbursement to personal care services, and tracking use of personal care services by race to ensure equitable allocation. As emphasized by an interviewee: “Although hospice has benefits, it puts the onus on family caregivers to care for the patient. There must be more integrated support, especially in resource-strapped communities.”
While policy change will be essential to improve equitable, person-centered care during serious illness, clinicians and health care systems must also prioritize quality improvement efforts regarding Black patients facing serious illness. CAPC is in the midst of cataloging quality improvement initiatives that aim to bridge disparities for Black patients with serious illness, and will continue to add tools and resources to our Health Equity toolkit.
To learn more about the Center to Advance Palliative Care’s efforts to improve quality of care for Black patients with serious illness, visit CAPC’s Project Equity.