If you were hospitalized for a severe illness, would you trust the ICU doctors with access to your complete medical history? In theory, of course, all of us should feel able to answer yes. Doctors need complete, accurate information about a patient’s history to make the best possible decisions about that patient’s care. But what if stigmatizing info in some charts led them to deprioritize the patient because they do not value some aspect of that person’s identity? For transgender patients, as well as patients with other stigmatizing information in their medical pasts, there’s reason to fear that an accurate medical history could lead to worse treatment, not better. In fact, just this week, the Trump administration’s health department is apparently moving to finalize a rule that would roll back Obama-era protections on LGBTQ discrimination in health care settings. In the midst of the coronavirus pandemic, this has me thinking dark thoughts about what I would, and would not, want a doctor treating me for COVID-19 to know.
As a trans person, I’ve experienced medical discrimination firsthand. After a recent move, I struggled to find a doctor willing to prescribe the hormone treatments I’d already been on, by then, for more than two years. For the first six months, I drove three hours to a Planned Parenthood clinic to find a doctor who’d prescribe my meds. Eventually I found a doctor closer to home, but it’s not ideal: He regularly asks me prurient, nonmedical questions about my transition, including, in one instance, asking what my “cup size” was. There are far worse horror stories than mine. In fact, I’ve found doctor’s appointments go easier if I avoid disclosing my transition history whenever possible. I get quicker, more professional care if we skip the apparent distraction my transition presents.
For the most part, my experience has been one of inconvenience rather than danger. But what if I was in a crowded ER filled with dying patients and an overworked, traumatized staff? In an emergency, you want to feel as though your medical team will do everything they can to save your life. I don’t have that confidence, because I’ve experienced doctors not treating me equally when my life wasn’t at stake. I know there may be nagging doubts and biases about my gender identity in the back of my doctor’s head. These might mean they spend less of their limited time on my case, or waste time being distracted by irrelevancies about my transition history. At the extreme end, they might send me home out of antipathy or prioritize a more appealing cisgender patient for extraordinary measures such as a ventilator. That’s why, if I fall ill with COVID-19, I won’t volunteer the information that I’m trans. Why risk even a slight possibility that someone might see me as less valuable than the patient in the next bed?
Sharing health information isn’t necessarily a patient’s choice. A rare point of concurrence between former Presidents George W. Bush and Barack Obama was the desire for efficient, transferable electronic health records throughout the U.S. Obama even put $27 billion into incentives for providers to adopt EHRs as part of Obamacare; he’s said that the difficulties in achieving this was one of his greatest disappointments with the law. Perhaps because of this bipartisan support, EHRs have never been controversial in theory, even though their implementation has continually come up short. Criticisms have focused on lack of transferability between competing systems and complexity sucking up doctors’ precious time.
The concept of patient privacy, both in the system we have now and in the supposedly ideal system of easily transferable EHRs, has always been concerned with protecting a patient from information leaking out from medical settings into personal settings where it may cause embarrassment or harm. However, this assumes that medical histories are always treated neutrally by doctors. Doctors are human beings with human prejudices, whether unconscious or otherwise. According to a 2017 NPR poll, 1 in 10 transgender Americans report having been discriminated against in a medical setting, and a further 22 percent say they’ve avoided seeking medical care out of fear they will be discriminated against. Transgender people are now facing the unsettling possibility that, if we contract COVID-19, the same medical discrimination we’ve been facing all along could result in other patients’ lives being considered more worth saving than our own.
For a while, the situation for trans patients looked to be improving under Obamacare, which forbade discrimination against trans patients outright. However, these protections were successfully delayed by the Trump administration, which is seeking to go even further and enshrine a right to discriminate against transgender patients in the law. We know that discrimination does happen, there are no laws preventing it from happening, and the current administration wants to go further in ensuring it can happen without consequence. In such a climate, the only refuge for a patient like me is secrecy. Keeping my transition history secret might expose me to more risk, if something about my hormone therapy or anatomy turns out to be relevant to my case, but I believe that should be a risk I am allowed to take. My trans status may turn out to be hard or impossible to conceal, but I won’t volunteer it. Doctors have no right to force me to share information they can, and do, proceed to use against me in a discriminatory fashion.
Although gender identity has been singled out by the Trump administration, it’s not solely trans people who have reason to worry about doctors’ biases. A gay man on a daily HIV prevention medication such as Truvada for PrEP might face discrimination, as might a person with a history of mental illness treatment (particularly severe mental illness or hospitalization) or a person who overcame a struggle with alcoholism or addiction in their past. (Of course, there are also groups who face discrimination without any ability to hide—black Americans in particular and also other people of color and people who are overweight.) Ultimately, I believe the only solution is to give individuals the opportunity to keep irrelevant parts of their medical history private, even from the doctors and nurses treating them.
If we agreed patients should have this right, it could be achieved in different ways. We could simply enshrine the right of patients to refuse to share whatever aspect of their medical history they wished and be done—if the patient’s actions ultimately hurt the patient, they hurt the patient, and that’s OK. However, it is true that patients may not be the best judges of whether it’s safe to exclude certain information. An intermediate approach would be to allow patients to indicate that they prefer certain info not to be shared, and then have a knowledgeable third party determine whether it is safe to follow the patient’s wishes in a particular case. A trans person seeking help with an ingrown toenail would have part of their chart redacted, while a drug-seeking patient with a history of addiction complaining of pain would not.
COVID-19 is forcing us to confront the acute possibility that we may become ill, may need to be hospitalized, and may even die before our time. These are circumstances that probe our deepest fears, and one of mine is being treated by a doctor who doesn’t fully value my life as a transgender man. I do not believe in the conventional wisdom, which says my medical history is safe as long as it’s only shared between health care providers. I do not trust all health care providers to treat me equally, with respect, and I should have the right to take whatever risk neglecting to disclose my history entails.