According to a new report, more than half of the transgender and non-binary people whose deaths were investigated by the medical examiner over the last 10 years were misgendered on their death certificates. This erasure can be painful for families. It can also have monetary consequences. Death certificates are used for reporting a region’s vital statistics, which can influence the allocation of federal and state resources. Kim Repp, Chief epidemiologist for Washington County, was a co-author on the report. She joins us to explain.
Note: The following transcript was created by a computer and edited by a volunteer.
Dave Miller: This is Think Out Loud on OPB, I’m Dave Miller. We start today with misgendering after death. According to a new report, more than half of transgender or non-binary people who died in the last 10 years in the Portland metro area, and whose deaths were investigated by a medical examiner, were misgendered on their death certificates. This erasure can be painful for the people they leave behind. It can also obscure important public health information about who is dying, and how. Kim Repp is one of the co-authors of this report. She is the chief epidemiologist for Washington County. Kim Repp, welcome back.
Kim Repp: Thanks Dave.
Miller: Why did you and your team think to look into this in the first place? What made you think this could be an issue?
Repp: Well, of course first of all, anything but COVID, right?
We were actually experiencing a death of a transgender individual associated with a unique sort of drug, and it was happening across the country. So the epidemiologists in the three counties, we ended up looking into the medical examiner records just to see what’s there.
We noticed the investigators had written that the individuals were transgender, like “transgender women” or “transgender man.” And then we looked at the biological sex assigned, and they did not match. And then we checked the death certificate, and that did not match. So it was just kind of a natural curiosity that led us down that path.
Miller: Just to be clear, if I understand correctly, you weren’t looking at all deaths of transgender and non-binary people, just those that were investigated by a medical examiner. What kinds of deaths would necessitate that kind of investigation?
Repp: Sure. And, the only reason why we just looked at the medical examiner deaths is because we don’t have access to the other data, like all hospital data.
A death that falls under the jurisdiction of a medical examiner is one that is violent or suspicious. That includes death by suicide, homicide, accidental, or just questionable circumstances. Let’s say the person doesn’t have a primary care physician or there’s no information around. So basically any death that falls under those circumstances gets a visit from our local death investigator team.
Miller: So then to be clear, if say a transgender woman died of cancer, that death wouldn’t have showed up in the data you’re looking at?
Repp: That’s absolutely correct. Cancer is considered a natural death. Somebody who dies in the hospital, they would go through the hospital system. They’re still using the same death certificate in both places. The hospital software may or may not have a place for gender identity, each hospital uses different software, so we weren’t able to look at that. But we have no reason to believe it would be significantly different.
Miller: How does a medical examiner make the decision about what to put for gender on a death certificate?
Repp: It’s a little complicated. The death investigator that goes to the scene interviews family, next of kin, anybody who is present or may have information about the deceased. And they write a report. And in that report, it might say this person identified as a transgender woman. And so that report is presented to our state medical examiner for his official ruling on the manner and cause of death. If an autopsy is performed, the medical examiner’s office is focused on physical anatomy. When you do an autopsy it’s medical, it’s clinical, they’re describing what is physically present.
So what goes on the death certificate is actually a conversation between the funeral home and the legal next of kin in Oregon. So let’s say I am a transgender woman and I have lived as a woman most of my life, I identify as a woman, and I haven’t spoken to my parents in 20 years. Well if I die, my parents are my legal next of kin, and they could bury me as a man, or put male on my death certificate, against my wishes.
Miller: This kind of example was mentioned in the study using a phrase I’ve never heard of, “nonconsensual detransitioning.” How common is this?
Repp: Part of the problem is we can’t actually measure that very well. I mean to look at what we did, we had to literally read through hundreds of reports to gather all the information that the death investigators were already collecting, and then manually compare it. There is not an easy way to do it. And we know that, to my knowledge at this point, there is no one in the country that collects gender identity next to sex. California is trying to do that on the death certificate. So, kind of by definition, we’re not counting it.
In terms of nonconsensual detransitioning after death, that does happen. And again, usually in that case, that person has experienced significant trauma. That’s usually a medical examiner case. So it does happen. I personally have not seen it in Washington County, thank God, but I don’t want to speak for anyone else on that.
Miller: What other information could a medical examiner turn to to help them fill in gender in the correct way?
Repp: Our death investigators in the tri-county area are already gathering that information and putting that in the report. It’s more a problem with, for example, the software that we use doesn’t have a place to put that information except in this big old text field. And then when you get to the death certificate, there’s no place to put that information. So it’s a system wide issue. But the gender identity is determined by the death investigator through the standard interview process in the tri-county area, because they’ve been trained to do so.
Miller: How much of this is just a software question then? I can imagine so many people who work in offices have their own versions of this, that there isn’t just isn’t the place to put the information that is necessary. So how much of this is a cultural or education question, and how much is software?
Repp: Boy, that’s a great question. I would say in the steps, the very first step is making sure, across the country, death investigators are trained on how to ask questions about gender identity.
And the second step is actually having a place in the software to put that information. The only places that I saw it, and I’ve been across the country talking about death investigator work, were in health systems that they built themselves so they could have that. But the really heavy hitter software, to my knowledge, does not have the ability to collect that information. So that’s the second place.
So even if we got the investigators right and we fixed the software, now we’re to the death certificate. We don’t have anywhere to put it on the death certificate. All three of those have to be worked on simultaneously to fix this.
Miller: In 2017, Oregon became the first state in the country to allow residents to select non-binary in the gender field for driver’s licenses, meaning they could select to put an X there instead of an M or an F. Is that something that medical examiners or death investigators in Oregon are trained to look for?
Repp: Each office is trained differently, and has different resources. I grew up in Clatsop County, and they don’t have a team of 12 certified death investigators there. There just isn’t the resources. So it depends on the training. As we said in the paper, there is no national training required for that.
But interestingly, when we went through all the death records, we couldn’t find a single person that had X on their death certificate. So I don’t know if everybody who uses the X is dying in a hospital, or if nobody’s using it, but we could not find it anywhere.
Miller: What are the societal repercussions of the misgendering that you have found?
Repp: So when a population is not counted, it is erased, period. This happens to our Alaska Native communities, and it’s considered a genocide by data. Essentially, you are erasing an entire population. And we already know about our trans folks that they are at a higher risk for violence. And we don’t even have the systems to really measure that. So the implication, to me personally, is that there is a lot more going on, which could be incredibly significant, that we’re just not capturing because we don’t have the ability, or we haven’t made the ability, to do so yet. We literally do not have a way to capture transgender individuals in a systematic way, and the violence that they experience.
We all know governments make their funding decisions for vulnerable populations based on that information. So if we don’t have any information on that, we can’t advocate for funding, because they don’t exist, because there’s no data. It’s a really, really significant problem.
Miller: You’re looking at data from the tri-county region, the Portland area. Do you have any sense for how the rest of the state, or even the rest of the country for that matter, might compare?
Repp: We can only see our own data, I cannot see any other county in Oregon. So I don’t want to speak to that. But we’re all using the same software and the same death certificates in Oregon.
California, they’re the most progressive in the country on this. They have developed essentially a form a person who is transgender can fill out while they’re alive that protects the next of kin from being able to change their sex on their death certificate. So that was kind of their work around to fix one of the problems. But we don’t have anything like that in Oregon. We were not able to find anything like that in any other state in the country.
Miller: What other changes are you recommending at the local or a higher level to address some of these issues?
Repp: So at the federal level, I would just request more options on our birth and death certificates. At least our death certificates, right? A person may not be assigned transgender at birth, I would assume. But they could be intersex, or they could be X. We don’t have a way to capture that at birth, but we should capture it at death. And honestly, it’s a lot of paperwork and laws and all that kind of stuff. But really, we’re just asking to add a few more categories to the death certificate so people can be respected and honored in their death, like everybody else is.
Miller: Finally, the purpose of this study was not to look into the deaths themselves. It was to look into the percentage of transgender or non-binary people who were misgendered on these official records. But did anything stand out to you in terms of the deaths themselves?
Repp: Yes. The majority of our deaths in our transgender community in the Portland Metro area were by suicide. And that again speaks to the overwhelming need in this community for protection, and acknowledgement, and validation, so things like that, deaths by suicide, can also stop happening. This really affects people’s lives, dramatically.
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