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  • Writer's pictureCindy Kaufman

Bringing Race and Culture to the Forefront in End-of-Life Care

A Perfect Storm...Awakening

The awareness of cultural and racial disparities in end-of-life care has risen necessarily to the forefront in 2020, first due to the COVID-19 pandemic, which disproportionately affects persons of color, and second, to the spotlight on racial and social injustices following the murder of Mr. George Floyd at the knee of a police officer in Minnesota in May 2020. The perfect storm of these two events was a long overdue awakening in this country and for end-of-life care providers, a beckoning opportunity to look at how race and culture are addressed – or, more precisely, not addressed – in our own field.

For end-of-life doulas, most training programs that have been developed in the last few years in this country, inspired by the Death Positive Movement, embody curriculum primarily for, and taught primarily by, the white dominant culture, many of which are unattainable by minority attendees due to location and/or cost of attendance. This allows for two gaping holes in training end-of-life doulas; first, the material lacks the scope and breadth of knowledge necessary for white doulas to work effectively and competently with culturally and racially diverse clients, and second, preventing access to training for minorities that results in this profession being primarily dominated by white females.

We, as a Collective (see Colorado End-of-Life Collaborative), are listening, learning and desirous of being part of the change that needs to occur in our field so that we can offer competent EOL doula services to everyone. Our Board of Directors possesses cultural humility and a desire to do outreach in all communities, but also to open our doors and arms to end-of-life doulas from a broad range of cultures, races and ethnicities to join as members of our Collaborative. For more information, we include some timely articles addressing these areas:

First culturally based end-of-life care protocol created by community members published

University of Alabama at Birmingham – June 30, 2020

Culture shapes how people make meaning out of illness, suffering and dying, and it influences their responses to diagnosis, prognosis and treatment preferences. Researchers at the University of Alabama at Birmingham have created the first culturally based protocol for patients living with a serious illness or facing end-of-life care.

To read more, click here

How do you foster ‘a good death in a racist society’?

Los Angeles Times – June 25, 2020

Death positivity, death doulas, death cafes — these may not be mainstream terms, but over the last 10 years, there’s been a surge in what’s become known as death positive work.

And now the work of Black practitioners in the burgeoning field is intersecting with America’s racial reckoning and the Black Lives Matter movement.

To read more, click here

How Death Doulas Have Adapted End-of-Life Care Amid COVID-19

Vogue – July 30, 2020

Christy Marek, a certified end-of-life doula, has seen firsthand the added stress that terminally ill individuals have had to endure because of the pandemic. One client had been living at home but decided that her health was putting too much added stress on her family. “She had considered going into a facility just so that she could get the level of support that she needed as she was becoming bed-bound,” says Marek...

To read more, click here

by Cindy Kaufman, President and Co-Founder, Colorado End-of-Life Collaborative

Originally published by Colorado End-of-Life Collaborative,

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