Racial Inequity in End-of-Life Care

A few tools that might help...

As a social worker, it continues to baffle me that we as a country haven't resolved racial inequities, yet. Bias lead to prejudices which lead to discrimination. I, and we, can do better. Similar to my blog on COVID-19 Resources, I've decided to dedicate a place to gather resources regarding Racial Inequity in End-of-Life Care. While there are many facets of Racial Inequity, I'm focusing on healthcare in general and specifically end-of-life care. My purpose is to broadly engage in this conversation, to challenge racial bias, and to be a small part of a growing foundation for change. Let's get to it...

2/21: JPSM Racial Disparities in End-of-Life Care Between Black and White Adults with Metastatic Cancer, Perry, et al.

An interesting article by researchers at Tulane (and Southern Louisiana) in Journal of Pain and Symptom Management. This study looked at 875 White and 415 Black patients with metastatic cancer 2011-2017. They wanted to see if there was a difference in “five indicators of burdensome care in the last 30 days of life”: chemotherapy, hospitalization, ICU admission, emergency department admission, and mechanical ventilation. They found:

• 85% received at least 1/5 “burdensome indicators”
• 76% hospitalized
• 44% ICU admit
• 29% chemo
• 23% mechanical ventilation
• 18% emergency department admit

Black patients were 1.66 times more likely to be hospitalized and 1.57 times more likely to have an emergency department admit. The other metrics were not statistically significantly different. Authors hypothesized Black patients would have had significantly higher hospitalizations, ICU admits, mechanical ventilation, and emergency department admits; they expected lower chemo use. They noted younger patients and those with more comorbidities had higher likelihoods of receiving “burdensome care”.

Worth the 15 minutes... Listen to the engaging TED Talk by Baratunde Thurston: How to Deconstruct Racism, One Headline At A Time. To many good points to summarize, so I'll share just one: Change the Action to Change the Story to Change the System. (7/30/20)

Worth another 15 minutes... Listen to the engaging TEDMed Talk by David R. Williams: How Racism Makes Us Sick (presentation given 11/16; posted 8/12/20)

(Summary from Hospice News Today, 8/25/20.)
Mount Sinai Researchers Investigate Racial Disparities In End-of-Life Care
News Release, August 24, 2020
New York, NY—In an original investigative study, “Evaluation of Racial Disparities in Hospice Use and End-of-Life Treatment Intensity in the REGARDS cohort,” published in JAMA Open Network today, researchers with the Icahn School of Medicine describe racial disparities at the end of life. Increasingly under scrutiny in medicine, racial disparities are well pronounced during the end of life. While hospice care has increased substantially in recent years throughout the US, stark racial disparities remain in utilization. The study of 1,212 participants found that black decedents were less likely (34.9 percent) to use hospice than white decedents (46.2 percent). And black decedents were far more likely to receive aggressive care at the end of life. ... “It is critical that we address disparities in quality of care at the end of life, including use of hospice. Despite impressive growth in palliative care and hospice use in the US in recent years, we continue to find that blacks are receiving more burdensome care at the end of life. This is unfortunately not surprising and should be a call to action. The medical community must do more to ensure equal access to high quality end-of-life care including hospice. Current Medicare guidelines for accessing the hospice benefit, including foregoing curative care, is a barrier to those who have been systematically denied quality healthcare. Reducing disparities will require improving communication and education around hospice care and ultimately addressing the systemic racism and bias that drive these disparities,” says Katherine Ornstein, MD, PhD, lead author, associate professor, Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai.

Congrats to Capital Caring for taking a lead. Happy to post similar efforts from all hospices. (Summary from Hospice News Today, 7/15/20.)
Capital Caring Health Addresses Racial Disparity Among Hospice Users—Establishes Center for Equity, Inclusion, and Diversity
News Release
July 14, 2020
Falls Church, VA—While advanced illness/ hospice care has been available in the United States since the 1970s, providing specialized medical and psychosocial support to those with a life-limiting illness, it remains a care option significantly underutilized by key minority groups. ... Capital Caring Health, (CCH) one of the oldest and largest nonprofit providers of advanced illness, home and hospice care serving 2,500 patients each day throughout the Washington DC metropolitan area, is taking steps to address the huge disparity among minorities with the establishment of The Center of Equity, Inclusion, and Diversity (E, I &D). ... “The new Center of Equity, Inclusion and Diversity will further OUR organization’s mission, strategies, and practices to support a diverse workplace and leverage the effects of diversity to achieve a more equitable business environment and enhance the communities we serve,” [said President and CEO of Capital Caring Health Tom Koutsoumpas]. ... The new Center will be led by two key staff members, Keith Everett, Chief Officer of Performance, Cultural Operations, and Compliance, and Altonia Garrett, Vice President, Public Affairs and Strategic Partnerships who will serve as Executive Director of the Center. ... Goals for new Center include:

• Developing integrative approaches and programs for the diverse populations served
• Addressing the health equality, equity, and disparities of care being delivered in CCH’s service area
• Attracting and leveraging diverse staff to increase engagement to make CCH the best place to work in healthcare

Interesting comments regarding Hospital Palliative Care Protocols. (summary from Hospice News Today, 7/22/20.)
UAB Researchers Create Culturally-Based Protocol For Palliative Care
WBHM-FM (Birmingham, AL)
July 21, 2020
Researchers at the University of Alabama at Birmingham have created the first culturally based protocol for patients facing end-of-life care. Ronit Elk is a professor in the Division of Gerontology, Geriatrics and Palliative Care at UAB. She has spent her life living in different countries. Once she moved to the U.S., Elk said she noticed the lack of respect for cultural differences for the nation’s sickest minority patients, particularly African Americans.

WBHM: What was the most notable cultural difference?
Ronit Elk: For Black patients and their families going through end-of-life care, the concept of hope and miracles is key. Physicians are primarily trained as scientists to read the physical symptoms that are occurring. Black patients and families who believe that there is always hope and it’s in God’s hands, they understand yes, you’re the physician, but you are not the decider. It is God that decides whether my loved one is going to live or die. And it’s caused a lot of clashes with physicians and family members where physicians are often saying to patients’ families, you’re not really accepting that the person is going to die. There’s no way they can live. And the family is saying it’s in God’s hands and a miracle can happen. And somehow that’s a very difficult thing for many physicians to accept. ...

WBHM: Why were minority patients over-looked in models of end-of-life-care?
Elk: The model that was developed was based on the white middle-class model. This model is very wonderful if you’re white, middle class and Christian. It is most inappropriate in many cases if you’re not white or you’re not middle class or if you’re not Christian. So why it’s so difficult to understand that different cultures may look at death, life, illness differently; I have no idea. I think maybe in America we’re not taught enough to understand different cultures. But we’re doing a lot of studies with people from other countries, three in Africa and some in other countries, because over there, people know “if a model is for white middle class people, that’s not going to work for my people. I want to see what’s really going to work for our community.”

WBHM: How do you get hospitals on board with this new protocol?
Elk: So the first thing we have to do is to prove that it’s very effective. What we’ve shown is that it’s feasible and it can be done. So we are simultaneously developing trainings so that we can train the physicians who won’t push against it, but will rather embrace it and it will be accepted in hospitals.

 Interesting comments. (summary from Hospice News Today, 8/8/20.)
Healthcare workers of color nearly twice as likely as whites to get COVID-19
Kaiser Health News/Modern Healthcare, August 6, 2020
Healthcare workers of color were more likely to care for patients with suspected or confirmed COVID-19, more likely to report using inadequate or reused protective gear, and nearly twice as likely as white colleagues to test positive for the coronavirus, a new study found. The study from Harvard Medical School researchers also showed that healthcare workers are at least three times more likely than the general public to report a positive COVID test, with risks rising for workers treating COVID patients. Dr. Andrew Chan, a senior author and an epidemiologist at Massachusetts General Hospital, said the study further highlights the problem of structural racism, this time reflected in the front-line roles and personal protective equipment provided to people of color. ... The study was based on data from more than 2 million COVID Symptom Study app users in the U.S. and the United Kingdom from March 24 through April 23. The study, done with researchers from King’s College London, was published in the journal The Lancet Public Health. ... The study showed that healthcare workers of color were five times more ... likely than the general population to test positive for COVID-19. ... Healthcare workers of color were also more likely to report inadequate or reused PPE, at a rate 50% higher than what white workers reported. For Latinos, the rate was double that of white workers.