In the midst of the coronavirus pandemic, one of the major issues for our country is the disproportionate effect COVID-19 is having on communities of color. Both infection rates and death rates are much higher in these communities than in white communities.
This is causing an increased need for healthcare, especially hospice care.
We talked to 24-year-old Lupe Tejada-Diaz who works in Washington state as an end-of-life care specialist and a death doula (a non-medical person trained to care for someone holistically at the end of life). She discussed why at such a young age she decided on this career, being an advocate for patients in hospitals especially during the pandemic and undoing the stigma around death as a taboo topic.
This interview was edited for clarity and length.
DYLAN ALLSWANG: Can you describe what the job of being a death doula entails for people who may not be familiar with that?
Lupe Tejada-Diaz: A death doula is somebody who handles the nonmedical aspect of dying. We counsel people through what they want their death to look like. We help them plan and — if they would like — on the day of their death. And after, we help their families deal with all the bureaucratic things that go into it.
DA: Who are some of your usual clients?
LTD: I work specifically with people of color, indigenous people, LGBTQ communities and low-income communities. I do a lot of community education. So I work at senior centers and community areas that ask me to come in and talk about accessible care options.
DA: This is a pretty unique career path. Why did you choose to be a death doula?
LTD: I saw a need in my community that wasn't being met. In America, death is still really segregated. And a lot of people don't think about when we [people of color] go into a white-owned funeral home, they don't know how to do our hair; they don't know how makeup works on our skin tone.
I wanted people to see that there are different options. Also that you don't always have to pay hundreds of thousands of dollars to have a good death. When you die in America, you have to kind of undo the life you had. If you have debts, they need to be settled and sorted and your assets have to go through the system called the probate system.
In order to do that, you need to have all kinds of paperwork, different death certificates, different powers of attorney and it's really difficult for families who are grieving to call 100 different companies and be like, "Oh yeah, so and so died." So that's where I come in and help do that kind of tough stuff for them because death in America is unfortunately a super long and arduous legal process.
DA: Communities of color are more likely to distrust medical institutions. How does that play into your line of work?
LTD: So in a lot of the American health care systems, people of color specifically aren't treated the same way that their white counterparts are. They are kind of brushed aside. Their concerns are not addressed.
I think that with the coronavirus, now more than ever, we are seeing that people of color are dying at disproportionate rates to white people. And the people working in death are also really tired because even in the middle of a pandemic, we still want to honor this wish that our cultures have.
I think that having someone who speaks the same language or looks like you or from the same kind of background, really helps you feel that sense of security that you normally wouldn't get in hospitals or clinics. You feel like someone is on your side to kind of help you battle through that. So there's more trust.
DA: How are you working with clients during the pandemic?
LTD: So we're doing a lot of virtual communication, Zoom and FaceTime. But I'm also still doing a lot of the legal work I do. But unfortunately, the people that are taken into the hospital, I'm unable to be an advocate for them because it's kind of out of our hands at this point. People are scared. People are worried that they're not going to be able to have the traditional funeral burial services that they wanted their whole lives.
Specifically the Indigenous community, we have gone through epidemics and pandemics, not quite to this size, but the kind that wiped out our entire tribe and our entire society. So we have a sense of knowing that it will pass, but there is still that fear. We all just have to do our part to stop the spread and to be mindful of our neighbors as we possibly can be.
DA: Why do you think death is such a taboo topic?
LTD: I think that the main goal for a lot of death doulas is to spread awareness that it's OK to talk about death. Talking about it isn't going to bring death. There's a lot of superstitions along those lines. And I just want everyone to know that it's not necessarily something scary. It can be something beautiful.
We don't have to rely on our doctors and hospitals to deal with death if it's something that we can deal with at home. There's a place for medicine and there's a place for home care. And by marrying that together, I think it would really help the landscape of the American mentality for future generations.