Advance Care Planning: The Need for Racial Equity in End-of-Life Care

Ryan Van Wert, MD, Co-founder & CEO of VyncaNational Minority Health Month presents a critical opportunity to address the huge gaps that exist when it comes to race and healthcare quality in the United States. While there are a variety of factors that continue to play a role in creating this inequity, its impact leads to limited access to healthcare services, increased presence of certain diseases, and poorer health outcomes for racial and ethnic minorities. These fundamental issues around disparities in healthcare are also often exacerbated during the most vulnerable time in a patient’s care journey – at the end of life. When it comes to dying, the reality is that minorities do not have the same resources and access to high-quality care and advance care planning — leading to a significant disservice at the end of life, when individuals’ needs and preferences should be of the utmost importance.

Advance care planning is a gateway to both palliative care, which provides relief from the symptoms and stress of serious illness and aims to improve the quality of life for patients, as well as hospice care, which provides compassionate care for people facing a terminal disease. However, without having an advance care planning discussion, many people, particularly minorities, do not know that they can utilize or have access to these services. 

A study found that Blacks are more likely to have significantly higher rates of hospital admissions, ED visits, opt for more aggressive treatments, and discontinue hospice care. Data reveals that 82% of Medicare hospice beneficiaries were Caucasian, while 8.2% were African American, 6.7% were Hispanic, 1.8% were Asian/Pacific Islander and 0.4% were Native American. As a result, racial/ethnic minorities receive fewer hospice-related benefits such as lesser symptoms, lower cost, and improved quality of life. 

There are also disparities in palliative care accessibility. Statistics show 94% of U.S. hospitals with 300+ beds have a palliative care team and 72% of hospitals with 50+ beds have a palliative care team, yet only 60% of public hospitals, caring for ~44 million people, mostly minorities, report having a palliative care team. 

COVID-19 has spotlighted this issue, underscoring the need for individuals, regardless of race, to have an end-of-life plan in place. Data from the CDC shows that minorities are dying from COVID-19 at a higher rate than White Americans. At the same time, Black and Hispanic older Americans are less likely to have advance directives than White older Americans, and Black Americans are more likely to receive worse end-of-life care and are less likely to participate in advance care planning. Black Americans also report being less satisfied with the quality of their end-of-life care and often report concerns about provider communication.

While cultural, historical, and religious issues influence how many minority populations approach advance care planning, the unfortunate reality is that there is also a significant trust barrier preventing many minorities from having conversations and seeking physician recommendations. A recent poll from The Undefeated and Kaiser Family Foundation found only 60% of Black adults said they trust doctors to do what is right most of the time, compared with 80% of White adults. 

When engaging with patients, healthcare providers must approach advance care planning differently depending on the diverse communication styles for ethnic backgrounds. Organizations such as Goals of Care Coalition of New Jersey, Visiting Nurse Service of New York (VNSNY) and the Chinese American Coalition for Compassionate Care tailor advance care planning for minority communities. Similarly, PREPARE for Your Care helps bridge communication gaps and enhance advance care planning literacy by writing all of its resources at a fifth-grade reading level to accommodate for language and education barriers, and offering all content in Spanish as well as English.

The acceleration of telehealth adoption in many areas of healthcare can also be leveraged to facilitate conversations about care wishes and increase access to advance care planning for underserved populations. In the last week of March of 2020, there was a 154% increase in telehealth visits compared to the same period in 2019. And like many areas of telehealth, the two advance care planning CPT codes enable healthcare organizations to be reimbursed for conversations via telehealth.

During National Minority Health Month and beyond, it is time to acknowledge that racial disparities remain in healthcare and take measures to make end-of-life care more equitable. The industry must build trust, prioritize the needs of minorities for access to hospice and palliative care and have these important advance care planning dialogues with their patients, as they are integral to ensuring individuals’ voices are heard and care preferences are honored. This way we can guarantee everyone in this country receives dignified and personalized end-of-life care.

About Ryan Van Wert, MD

Ryan Van Wert, MD is a co-founder and CEO of Vynca. In addition to his role at the company, he is a part-time Clinical Assistant Professor at Stanford University, where he maintains a clinical practice. Prior to Vynca, Ryan co-founded AWAIR, Inc. a medical device company focused on reducing complications for critically ill patients, which was acquired by Cook Medical Technologies in 2015. He is frequently invited to speak about his passion for improving care delivery at the end-of-life and the process of value-driven healthcare innovation.

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