Across the country, hundreds of thousands of eligible patients are not accessing and receiving the numerous benefits of hospice care, and people of color are disproportionately impacted. Black Americans typically receive hospice care at lower rates than white individuals, which stems from a lack of awareness about the benefit, as well as a historic mistrust of the healthcare system.
According to a report from the Medicare Payment Advisory Commission (MedPAC), 50.8% of white Medicare decedent beneficiaries used the Medicare hospice benefit in 2020, compared to only 35.5% of Black Medicare beneficiaries. Data also showed that hospice use actually decreased by 5.3 percentage points for Black beneficiaries between 2019 and 2020.
This means that Black beneficiaries are not receiving the valuable services that hospice provides at the same rate as whites. For patients, hospice offers quality end-of-life care that helps manage pain and symptoms and provides a support system for both the patient and their family. Hospice is also a proven solution to reduce unnecessary and costly hospital readmissions, emergency department visits and intensive care unit stays as seriously ill patients near the end of life.
Barriers to hospice access
Unfortunately, many factors limit access to hospice care, including a general lack of public knowledge about end-of-life care and how it is paid for by Medicare Part A, Medicaid and other insurance plans. And lack of awareness isn’t divided evenly: While 52% of white individuals are aware that hospice is a benefit covered by Medicare, only 39% of Black individuals are.
Another deeply rooted barrier is mistrust of the healthcare industry among some minority communities. These communities are often at higher risk for diseases such as cancer, heart disease, lung disease and stroke that make them eligible for hospice care.
The lack of awareness and trust means that many people who would greatly benefit from hospice are not in a position to do so. The good news, however, is that healthcare professionals have the power to change that.
Improving hospice utilization
Healthcare providers play a vital role in educating patients and are also responsible for referring patients to hospice. In fact, the only way patients can access the hospice benefit is through a provider referral. Therefore, educating providers is as important, if not more, than educating patients alone.
As a first step, healthcare professionals can and should work with patients at every stage of life to develop advance directives. These plans outline the type of care patients do and do not want at the end of life. Unfortunately, Black individuals are generally less likely to have an advance directive. A 2022 study from VITAS Healthcare found that Black Americans are far more likely (40.3%) to know someone who has died without having made advance care plans, compared to 21.1% of white respondents.
To have fruitful advance care planning conversations, providers must build meaningful connections and ensure patients and families are treated with respect. When healthcare providers initiate these important discussions, patients are more likely to develop an end-of-life plan, and providers can ensure that the patient’s care reflects their wishes.
Providers must also learn how to talk to all patients – from various backgrounds and walks of life – about what hospice is, who pays for it, and how it can improve life for people with six months or less to live. There are numerous training opportunities available to educate healthcare professionals on talking to patients, including programs specifically on the needs of Black Americans at the end of life. Providers must learn how to initiate conversations from a place of empathy, present information in a way that builds trust, and dispel misconceptions that patients may have.
One of the most important things we can do to ensure Black patients and other patients of color are seen and heard is to invest in and build a workforce that reflects our patient population. Studies have shown that patients have better health outcomes when they are treated by doctors of similar backgrounds. However, Black and minority clinicians are generally underrepresented in the healthcare workforce. The best hospice organizations are making a concerted effort to hire a diverse workforce so all patients are represented by those who care for them.
Across the board, providers must be trained to provide culturally competent care to patients. When healthcare teams have access to resources about various cultural backgrounds and beliefs, it can lead to better care and more trust. This may include, for example, information on the important role of family – especially in the Black community.
Overall, healthcare partners can ensure that Black patients have greater access to – and understanding of – compassionate end-of-life care. By making a collective effort to raise awareness about hospice, Black individuals may feel more open to and accepting of utilizing its many benefits.
Dr. Sonja Richmond
Dr. Sonja Richmond is the medical director for VITAS Healthcare in Washington, DC. She is a dual board certified internist and hospice medical director. Born to immigrant parents from the country of Guyana, Dr. Richmond incorporates her unique perspective to the multifaceted cultural complexities that face healthcare, especially in the setting of end of life.
