Care for a Patient Starts with Speech

Stories of doctors struggling to talk about patients as people

Previously, I shared some excerpts from Smile, playwright Sarah Ruhl’s memoir of twins and Bell’s Palsy. I was struck by the way her doctors changed how they spoke about her children when they worried they might be in danger of dying. I’d had this experience, too.

You shared your own experiences, including a number of stories from people working in medicine, about what language you do or don’t find dehumanizing and what shapes your speech. Next week, I’ll share selections from your comments on Dobbs and whether abortion is the entrance fee women are expected to pay to be treated as equal citizens.

Finally, I put out a call on twitter for people to consider becoming paid subscribers—I was just on the cusp of qualifying for a one-time substack subsidy for my health insurance.

I’m very touched by how many people pitched in, with subscriptions or recommendations on social media. Paid subscribers let me say no to some freelance work to make time for this project. Thank you for making this possible.

A big theme of your responses was how many different problems doctors are trying to solve at once. They need to be precise, but also understandable to a layperson. They don’t know how different kinds of language will be received by a particular patient. They may pick “neutral” language that suits no one well if they don’t know what specific phrasing suits a particular patient.

Both Martha and Kathryn saw benefits in being asked “And how do you feel about being pregnant?” while I felt more like the doctor was waiting to sort my child into “person” or “problem” based on my response. Kathryn wrote:

I went to an urgent care clinic to get a blood test for pregnancy because the at-home test I was using looked weird, and the nurse who was taking my blood pressure and screening me for Covid made some offhand comments that made it clear he was assuming I must not want to be pregnant. So when the doctor who was doing my blood test asked me "how do you feel about the possibility of being pregnant?", I felt relieved at being able to express my actual feelings (overwhelmed, but excited), especially because only three other people knew there was even a chance I could be pregnant and I really wanted to talk about how I felt!

Martha echoed some of these thoughts, and added that the question is a chance for a woman to disclose any other pressures she facing, whether it’s abuse, a poor work environment, depression, etc., and it could be a chance for the doctor to take a more holistic approach to care. Maybe a woman doesn’t need to be screened for progesterone deficiency, but does need to know about the Medicaid options in her state and who can help her with the paperwork.

I like this vision of holistic care, but I don’t think it’s often what doctors provide, alas. I do want room for women to feel and express the full range of (possibly mixed) feelings they have upon finding out that they’re carrying a child. But it feels like a society that links the question of personhood to a parent’s feelings will always make this a weird question to ask and answer.

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Joseph commented on his friend’s experience on the other side of the issue, as a doctor.

A close friend of mine worked as medical scribe at an ER for about a year—simply standing in the room, taking down the details of the patients, any procedures undertaken, and so forth. That sort of depersonalizing language is exactly what he was trained to use, and he found himself having to fight off that sort of mindset in himself. He noticed that the ER docs, while generally capable and professional when working with patients, could be extremely irreverent behind closed doors.

While I don't know for sure, I suspect that there's two things going on: 1, it's important that medical language be very specific, in that every term have a clear and precise meaning that's not easily confused; and 2, in tense or high-stakes situations it's typically an immense advantage to be able to emotionally remove yourself from what's going on so you can focus on the material details. And at least in the ER (and likely elsewhere) I think this is exactly what doctors are trained to do, so that they don't crack in the middle of a lifesaving operation or let their emotions get in the way of solving the problem at hand. The flipside, unfortunately, is that thinking in this way for an extended period of time makes it easy to actually embrace that depersonalization, not as a defensive mechanism or temporary way of thinking, but rather as how they actually think about people.

I’m often frustrated by a lack of support from doctors, but it is good to have the reminder of how little support doctors often have. People need access to better coping mechanisms than flippancy and depersonalization.

The majority of doctors who experience burnout, depression, or both report that they are not currently seeking professional help, and do not plan to seek professional help.

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Karol also works in medicine and is also feeling the strain of the contradictory expectations of the field.

I'm a medical resident in Canada. I'm not sure that I remember specific instruction in medical school on how to talk with or about patients who are very sick or near death, at least until starting my palliative care rotation 3 weeks ago. For this reason, this rotation has been an instructive and helpful experience. However, it's been complicated by the fact that Canada has, in the past 5 years or so, liberalized its laws regarding euthanasia to an extent that truly beggars belief.

It's strange to be currently working in a discipline (palliative care) that, from its origins, has been bravely and humanely committed to extending personhood and respect to all people, regardless of level of function or disease, while simultaneously being expected to act like it's a normal and good thing for people to be classified by legislation and physician assessment into a group deserving suicide prevention, and a group whose condition is such that suicide assistance is seen as a good idea.

So many of my patients are driven to consideration of euthanasia by worry about "being a burden." In this cultural and legislative environment, the "dignity of dependence" really is such foreign vocabulary. Instead, we have "Dying With Dignity," a group committed to universalizing and enshrining in law the fears and prejudices of the rich, able and educated.

I really appreciate this comment by Karol. The NYT had an article this week on a website that encourages at-home suicide, with members giving advice on methods and telling visitors that they ought to go through with their plan, once they started considering death.

The site was presented as self-evidently wicked, but it isn’t that different from groups like the Hemlock Society or the official policy of Belgium. The line of whose life is worth living, and who gets to make that call, is getting blurrier.

The language we use to talk about vulnerable people is only a small part of that fight, but I still think it’s an important one.