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“When doctors ignore the evidence showing that a support system doesn’t have to be traditional in order to be effective, that’s not a medical judgment. It’s a personal prejudice that puts singles at serious risk.
Classifying patients as married or unmarried when studying the effects of social support undoubtedly makes research easier, with groups determined by a simplistic either-or. But since social support is not, in fact, limited to marriage, the results of such studies are bound to be flawed — not to mention perpetuating discriminatory treatment that can cost single people our lives.”
Joan DelFattore is a writer.
She shares her story and discusses her KevinMD article, “Patients without partners, and the doctors who stereotype us.”
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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.
Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Joan DelFattore. She is a writer, and she wrote the KevinMD article “Patients without partners, and the doctors who stereotype us.” Joan, welcome to the show.
Joan DelFattore: Thank you very much.
Kevin Pho: So we’ll get into your article in a little bit, but first off, can you share your story and your journey to where you are today?
Joan DelFattore: Sure. I was a professor of English and legal studies at the University of Delaware, where I wrote about free speech. I am in favor of it. I was diagnosed with cancer nine years ago. As you see, it worked out OK. That was the first time in my life I had ever been seriously ill, and I was astonished to find how much the fact that I do not have a traditional family support system mattered. I have a very strong support system, which is made up of friends and extended family, but health care providers were so affected by their own social expectations about what constitutes support that it had actually affected the chemotherapy that one oncologist proposed to give me. Fortunately, I knew what I was supposed to get, so I realized he was proposing to undertreat me and moved on to somebody else.
But afterward, I got curious about it. I’m an experienced researcher, although I have no medical training, and I wondered: Was this just that one person, or is this a thing? And I have encountered a number of other, smaller problems. For instance, even though federal law gives patients the right to say who is to have access to your medical records, I ran into staff people who would not give the records I had authorized to be released to my cousin, who is my closest living relative, because they were locked into the idea that it had to be immediate family. So I did the research, and it ended up being published in the New England Journal of Medicine, which I was very happy about.
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Kevin Pho: Let’s segue into your KevinMD article. If you could go into more detail in terms of having a friend-based support system, how did it directly affect your treatment?
Joan DelFattore: A few things. When I was in surgery for the cancer, I had signed a form saying that my cousins and a close friend were to be kept informed of what was happening during surgery. Even though this actually violates federal law, the people in the surgical waiting room would not give them updates on my progress. I didn’t know it at the time, but what had happened was that the people who did that effectively created a self-fulfilling prophecy. They saw someone who had no immediate family as isolated, and they made me isolated by not informing the people who cared enough about me to be there.
I ran into an even bigger problem when I recovered from the surgery and needed adjuvant chemo. I went to a person at a major academic medical center who got really hung up on my family situation. He kept asking, “You have no husband, you have no sons, you have no daughters. How will you manage?” Then he proposed to give me just gemcitabine. I knew that I was supposed to get gemcitabine plus a platinum drug; that was the standard. So I asked him why, and he said, “Oh, I wouldn’t give anything that harsh to someone in your situation.” And he seemed to feel as if I wouldn’t want it. He would not listen when I tried to tell him about the support system that had worked very well after surgery, so this was not hypothetical. I knew it worked. He talked right over me. He simply interrupted and started talking.
When I did the research, I found that according to the National Cancer Institute database, which tracks about 10 million patients, so this is highly definitive, they track, among other things, by marital status. If you are currently married, your chance of receiving surgery or radiotherapy is significantly higher than if you were divorced, widowed, or never married. And what was the news that I eventually published, and that was part of what I was talking about in KevinMD? The news is not that that’s news; it’s that it’s not news. The medical literature for 30 years has reported that discrepancy in care between currently married people and other people, and it’s been shrugged off as, “Well, people who are not married wouldn’t want stronger treatment. They wouldn’t be able to handle it.”
It’s expertise creep. The oncologists who wrote that know a lot about oncology. They know, if you’ll excuse me, diddly squat about psychology, and they didn’t bother to look it up. If they had, they would have found, for instance, a major study done by researchers at Harvard, MD Anderson, and Mayo Clinic trying to find out who refuses surgery for cancer, and one of the things they found was that among unmarried patients, 0.52 percent refuse surgery when it’s offered. So the perception that I encountered personally, that I wrote about on KevinMD, was about that oncologist whose own worldview got mixed in with his professional judgment, and he didn’t understand, he didn’t recognize that that had happened.
Kevin Pho: And when you explained to your clinicians how strong your non-family support was, or your friends’ support was, what was their reaction?
Joan DelFattore: It depends on the clinician, and that’s part of the reason I’ve been so intent on getting this out. The surgeon, who is now the chair of the department of surgery at Penn Medicine, was open to it from the beginning. It never even occurred to him to question it. He was interested in functional things, so he asked me questions like, “Who will bring you meals? Who will drive you?” The same thing with the oncologist I went to at Sloan Kettering, the medical oncologist. She is a woman who had been single herself until her mid-40s, so she did the same thing. She said, “If you can’t stay alone, if you have side effects, you can’t stay alone, is there someone you could stay with? Is there someone who would come and stay with you?” They asked functional questions rather than, “Is it someone to whom you are genetically or legally related?”
Kevin Pho: Wonderful. And you wrote that article back in 2016, about almost four years ago now. Has anything changed since then?
Joan DelFattore: Actually, that KevinMD article was what got me started doing the research. After I wrote the KevinMD article, I started thinking, “You know what? I keep talking about my personal experience. I’m a doggone researcher. Why don’t I go find out if other people have had this issue?” So that kind of inspired it and got it started.
What is disheartening to me is what has not changed. I actually went back and looked recently. I published the piece in the New England Journal of Medicine in September 2019, almost exactly a year ago, and it got a lot of attention at the time, news reports and so on. But I went back and looked. There are over a dozen articles that have been published in the medical literature that are indexed on MEDLINE, so legitimate pieces, that are still saying the same thing. They’re still saying, “Well, of course single people don’t get the same aggressive treatment as married people. They don’t want it. They couldn’t handle it.”
Kevin Pho: And from your research, approximately what proportion of patients have a friend-based versus family-based support system?
Joan DelFattore: Unfortunately, that was not covered. I was looking at, it’s now up to about 109 articles in medical journals indexed on MEDLINE that deal with this topic. They do not get into that. One thing they do get into, though, that people seem to find interesting is men versus women. The data show that men are more affected by their marital status than women. So in some big studies, and a big study, since they’re dealing with SEER, they have huge numbers, so a big study meaning 20,000, 30,000 patients, if you take the men out, then there is no difference in survival between men and women, if you leave, depending on marital status. If you leave the men in, then marital status makes a difference in terms of the patient’s survival.
But you know, I wonder if that’s generational. I wonder if 30 or 40 years from now, the people who will then be in their 70s or 80s will, because most of the people in these studies are older, since most people have cancer older. I wonder whether it has to do partly with the way the men who are older today were socialized, the things that they felt they could and could not do as a man.
Kevin Pho: We’re talking to Joan DelFattore. She wrote the KevinMD article “Patients without partners, and the doctors who stereotype us.” Joan, on this podcast, you have an audience of clinicians. What are some of the questions that we should be thinking about, and what are some of the issues that we should consider when dealing with this issue?
Joan DelFattore: I think probably the most important one is the suggestion that people’s cultural beliefs or upbringing might influence their decisions as clinicians. That is not an insult, any more than saying you have only two hands. I think the first thing we need to do is decriminalize things that are absolutely normal in human behavior and that are not somehow remedied by going through medical school. It is counterproductive to blame people for doing something that is as natural as walking on two legs. What we need to do is have it out on the table and talk about it. The reality is our culture is heavily couples-oriented and has traditionally been very heavily family-oriented. It’s just pervasive in the culture that support equals family. It is ridiculous to believe that that’s not going to influence at least some people who then become doctors, or who are doctors.
But I think perhaps the biggest thing to consider, looking at a patient, is: Why am I assuming this? So let’s say that you are looking at a patient who, unlike me, didn’t know what they were supposed to get, so they’re not going to challenge you: “Why are you not giving me this other treatment?” And you’re thinking, “Well, I’m not going to give this patient the platinum drug. I’m just going to use gemcitabine,” in a case where the platinum drug is the standard of care. The really important thing, I think, is to develop an automatic reflex: Why, why am I doing that? Because I think she doesn’t have social support. Do I know that?
Some physicians will say, “But I don’t have time to ask all these questions.” But think about it. If you were thinking about giving someone a medication that cannot be given to someone who has diabetes, and what’s in front of you looks like a classic diabetic type, older man, overweight, history of alcohol, whatever, smoking, you wouldn’t dream of giving that patient a less effective drug because, “I can’t give this to someone with diabetes, and I’m not sure you have it. You look like somebody who would have diabetes.” You would test.
From the patient’s point of view, it doesn’t matter whether it’s something like diabetes or social support. What matters to me is you didn’t give me the standard-of-care treatment that would have benefited me. It doesn’t matter to me what your reasons were. It’s equally important to me as a patient that you check whatever your assumption is. You ask yourself, “How did I know that?” And if the answer is, “I simply assumed it,” then you need to ask what those doctors I worked with asked, the one now at Penn and the other one at Sloan Kettering: Who would stay with you? Don’t assume nobody would. Who would stay with you? Who would give you a ride? Who would bring you meals?
Kevin Pho: And my final question: Do you have a take-home message that you want to share with the KevinMD audience?
Joan DelFattore: I think the take-home message is what I said a moment ago. We need to give doctors permission to be human, because when we ask them to be superhuman, we’re actually getting in the way of full functioning. It is the same as, I was joking with you before, I wrote an article for KevinMD about why patients should not mind waiting for doctors, and it says something like 36,000 shares. Patients, I think, need to be realistic, and doctors need to be realistic. Everybody calm down, take a deep breath, take a step back, and let’s talk about this.
Kevin Pho: Well, thank you so much for sharing your story and insight, Joan. Thanks again for being on the show.
Joan DelFattore: Thank you.
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