Discrimination at the End of Life Part 2: The Racial Experience

Last month I wrote about discrimination at end of life for LGBTQ people. This month’s article covers the experience of people of color.

Racial discrimination comes in different forms. The kind often talked about in the media and in public discourse is direct racism, which often shows up in assumptions about abilities, suspicions about motives, outright disrespect, or deliberate preference based on the color of a person’s skin. A white person crossing the street to avoid an approaching group of young black boys; a white shopkeeper talking to a Hispanic customer as if they only have a third-grade education; a white cab driver passing up the black woman hailing a cab to pick up the white woman further down the block. These are all obvious forms of personal bigotry. And every person of color has experienced this form of discrimination over and over again in our society.

As painful as this form of discrimination is, at least we can confront it person by person. But there is an even more insidious form of racism, which is referred to as institutional racism. This form of racism is so difficult because it is embedded in the very fabric of our social structures. There is no individual perpetrator to deal with, instead the formal and informal rules and procedures of an institution promote and maintain the discrimination.

Institutional racism has existed in our health care systems from the very beginning. This has led to a great disparity in health status and outcomes for people of color in many different ways. They have proportionately higher rates by percentage of population for cancer, heart disease, and diabetes; they have a shorter life span; higher incidence of hospitalization, and higher mortality rates from serious illness.

When it comes to end of life care, the statistics show the same pattern of institutional discrimination. Here are the numbers for utilization of hospice care by racial group: According to the National Hospice and Palliative Care Organization (NHPCO), in a 2017 report titled: Facts and Figures, Hospice Care in America (which was revised in April 2018), 86.5% of all hospice patients were Caucasian. Only 8.3% of hospice patients in 2017 were African American, 2.1% were Hispanic, and 1.2% were Asian.

Now compare those numbers to the percent of the population for these same groups: 61.3% of the population is Caucasian, so they utilize hospice well beyond their percent of the population. African Americans make up 12.7% of the population, so they use hospice in a disproportionately smaller way. For Hispanics at 17.8% of the population and Asians at 5.3% of the population, the poor utilization of hospice is even worse.

Let’s look a little deeper and go beyond utilization of hospice to see in what other ways people of color experience disparities in end of life care. In a study done by the Icahn School of Medicine at Mount Sinai with 577 hospices picked at random from around the country, it was reported that: “Black hospice patients were significantly more likely than white hospice patients to be admitted to the hospital (14.9% vs 8.7%), to go to the emergency room (19.8% vs 13.5%), and to dis-enroll from hospice before death (18.1 % vs 13.01%).”

Further evidence of discrimination came from a 2014 retrospective study conducted by the University of Washington’s Palliative Care Center for Excellence in Seattle. The researchers looked at the percentage of people who received a visit from the professional hospice team in the last two days of life. The study focused on Medicare hospice patients from a sample of 3,945 hospices involving 661,557 patients. Some 15.2% of black patients did not receive a professional visit, while only 12% of white patients suffered from the same lack of attention at this very critical time in a person’s dying process. While this differential may not seem dramatic, it is further evidence of the systemic discrimination in end of life care for people of color.

One of the causes of this institutional racism is that the majority of doctors, nurses, and medical social workers who work in our hospitals and hospices are white. As a result, care in these settings has been unconsciously molded to fit their cultural perspective and the medical professionals aren’t sensitive or understanding of the differences in attitudes, beliefs, and approaches to care that exist in black, Hispanic, and Asian cultures.

An interesting view of this subtle and mostly unconscious discrimination was portrayed in a U.S. News & World Report article in 2016. An African American doctor, named Ron Wyatt, went to an award-winning hospital in the west Chicago suburbs suffering from a fever of 104 degrees, after returning from volunteering for a week with orphaned children in Zambia, Africa. At one point a person comes in to get his insurance information. He tells her his name, but she pulls up another patient’s name on the computer. The insurance person then tries to insist the Dr. Wyatt’s name is different from what he has told her because of the mistake she made in pulling up his record. Finally, a physician comes in and gives Dr. Wyatt a less than thorough exam, orders IV fluids, and tells him that his labs are mostly normal. Dr. Wyatt had to press this treating physician for more information. The whole time, the physician didn’t look Dr. Wyatt directly in the face. “But what struck me most,” he said, “was he had one foot in and one foot out the door.”

So, what does this all mean for doulas?

First of all, we should work hard to bring more people of color into the end of life doula field, so they can help shape the model of care to better serve people in their communities. The end of life doula field is currently dominated by white women. Creating greater access to doula care in minority communities will happen when we can encourage more people of color to become doulas.

INELDA is taking on this mission in ways it can to help broaden access to doula services. For that reason, INELDA has started a scholarship program to help attract and train black, Hispanic, and Asian people. We have seeded that scholarship program with our own money. But we are actively pursuing further donations to that program so we can expand it. We are also exploring ways we can work to educate minority communities about end of life doulas. At the end of October, we are participating in a panel discussion on discrimination in end of life care hosted by The Open Center, a school for holistic learning in New York City. That panel discussion is part of Re:Imagine, a nearly city-wide group of events focused on finding ways to improve end of life care.

Secondly, we have to go beyond the systemic approach to working with this form of discrimination, and see how sensitivity to this issue plays out directly in the work we do. One of the guiding principles of good doula work—at least as it is taught by INELDA—is that our interactions with a dying person and family are always based on who they are, their beliefs, their cultural orientation, and their expressed wishes. Our care does not reflect our views on care and we don’t impose our values or beliefs on the people we work with. This attitude is a wonderful counterweight to the kind of institutional discrimination that is entrenched in some of the more traditional care structures.

When we work with people of color we also don’t make assumptions about what they want when it comes to medical interventions, who makes the decisions about care in this family, where they want to die, or how the body of the deceased person should be treated. We always need to ask about these aspects of care so we understand how this particular dying person and family can best be supported and guided through the dying process.

Lastly, we have to stay close to our own internal reactions and responses to working with people of color. We teach in our training that in addition to an intense focus on what a dying person and family is saying to us, we also need to be tuned in to what we are feeling and thinking inside us. That way we may notice when remnants of discriminatory attitudes we have absorbed unconsciously from society rear up inside. That gives us an opportunity to work against allowing those very subtle forms of discrimination to leak out into our work. Furthermore, we need to keep educating ourselves on the various cultural attitudes toward health care in different communities of color.

Discrimination by race at the end of life is something we must work hard to change. And we can change it. But it is going to take time and involve breaking the barriers that currently exist to bringing more people of color into doula work. Let’s make sure that this field of end of life doulas, which is still relatively young, doesn’t unconsciously repeat the discrimination that exists in other parts of the healthcare system.