Fat bias in medicine - interview recap

This week I was interviewed for a television news segment about fat bias in medicine and how it affects patient care. I was solicited for this interview because of my experience watching my sister, a 550-pound patient, die after a 6-week hospital stay in 2001.

Before the interview, I thought long and hard about what I was and wasn't willing to say.

For instance, I'm not willing to make broad, unsupported statements about the medical industry or fat bias in general. Unsupported statements are too easy to drag into the muck and do a disservice to those who have given longer and more careful thought to the issue.

Second, I'm not willing to make my sister a victim. The wrap-up questions in the interview seemed geared toward my saying that I spend a lot of time thinking about how fat bias played a role in my sister's death. Frankly, I don't remember what I said in response to this. It was a very frustrating series of questions because the premise is faulty. I don't, and never have, spent a lot of time thinking or talking about the cause of my sister's death.

I've spent a lot of time thinking about her life and how it should be seen as a valuable life.

I wrote my book - the whole reason I wrote my book - was to demonstrate the value of her life in the context of her weight, her dying, and in the context of a psychological struggle with fat, weight, and body image. The psychological struggle I portrayed was my own - not my sister's - because I felt and still feel that I don't have the right to put words in her mouth. If I don't remember her saying it, it didn't go in the book as part of her story.

I wish I'd had the true answer on my lips during the interview. Don't I think about how fat bias played a role in my sister's death? The answer: No; I think about how it played a role in her life.

I hope I said something like that. It was the only part of the interview that actually drew tears, not because I was emotional about my sister's passing, but because I felt that I was on the verge of doing dishonor to Joyce by answering badly.

What I tried to do in the interview was share my observations and questions rather than any conclusions. And yes, I saw fat bias in medicine during her hospital stay - both systemic and personal.

First, the systemic: The hospital was completely unprepared to deal with a human body of this size and weight. It was as though such a body had been unimaginable. Now, this is a problem for both the patient and the medical staff. Her doctors, who did their utmost to diagnose and treat conditions that were killing her quickly, did not have equipment or techniques to treat a larger body. Her nurses did not have equipment to help them lift and turn her in the bed and therefore were reluctant to attempt it. Yes, there is bias. I don't believe that the hospital at any point actually decided they would not have this equipment in place. It was more as though the need for it fell into a blind spot in their decision making. Which is to say that a number of human beings fell into a blind spot, reinforcing their position outside the province of health care.

Second, the personal. I'll give you the same two instances I gave the reporter. The first is more blatant and less harmful: The specialist who exploded, "She's HUGE!" on first seeing my sister, and who went on to quickly make the diagnosis that had been missing for weeks and that allowed my sister her best chance at recovery. No one had told him that his patient's size would affect how he'd proceed with her treatment, and I am to this day thankful that my sister's reaction to his outburst was one of cynical patience rather than tears and dismay.

Yet I would take his response any day over the honey-voiced, kind-sounding nurse who told me shortly after Joyce's admittal that the hospital didn't have any scales that were large enough to weigh my sister, so they didn't know her weight. I found out the truth 5 weeks later. Of course my sister had been weighed. That very kind-sounding nurse had told me a heartless lie and had withheld pertinent information about my sister's health status from me.

Is there bias? Yes. And as I told the reporter, there are individuals in every walk of life who are openly repulsed by larger, heavier people. Where I think we stand a chance of having a productive conversation is in talking about which human bodies we are going to be prepared to treat in our hospitals.

Because of economics, we may always fall short of the best answer, which is "All of them." But we should at least know that we are falling short. If we don't admit at least that, what incentive do we have to keep trying to do better?