Episode 027 | October 3, 2022 | 36:17
Guest: Alexandra Jønsson
Published: October 3, 2022
Duration: 36:17
Description
Alexandra Jønsson recently released her book “Soon we are all patients.” She differs between health inequality and health inequity. We discuss the costs of overdiagnosis and overtreatment, healthism in our culture, and why it is hard to say no to treatments as an individual.
Full transcript
About this transcript
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Many people tell me “if you just find cancer in an early stage.” But early is not necessarily good — some cancers never develop and disappear on their own. Beside the individual cost of living as a patient, it requires a lot of treatments. Just one story makes people say “shouldn’t we save one life?” And I have to be the big bad wolf saying — do you know what it costs?
Hello and welcome to the Sustainable Healthcare Podcast. I have a conversation with Alexandra Jønsson about overdiagnosis, overtreatment, and especially in this episode, healthism in our culture of health. Alexandra is a researcher, trained anthropologist. Her new book is “Soon we will all become patients.” At the core: not all our treatment is working, and as an individual it is very hard to say no to treatment. She wrote it with a medical doctor — both perspectives, data-driven evidence plus the human angle.
Alexandra: I am an anthropologist with a PhD in public health, currently associate professor at Roskilde University. My interest began with work for patient organizations — how people navigate everyday life with chronic diseases. My PhD was on health inequity (not inequality) — how older people in more remote areas of Denmark with multiple chronic diseases got less effect from treatments. Then I realized health inequity is also about how we allocate resources.
50+ years ago Julian Tudor Hart wrote in the Lancet about the “inverse care law” — we give more healthcare to people who need it less, less healthcare to people who need it most. Why aren’t the people most in need getting the resources? Because so many resources are allocated to rich and healthy people — preventing diseases among healthy people who don’t really gain from it.
The book is about overdiagnosis. Just recently researchers have started looking at what would minimize healthcare carbon emissions — a March 2022 paper from Australian researchers showed 80% of carbon emissions from healthcare comes from actions (treatments, scans, machines, housing) not materials. If we only talk about reusable materials, we don’t get anywhere. To take this seriously and have a healthcare system that can exist 30 years from now, we have to look at actions.
One key point: we are giving too much healthcare to the wrong people, and part of that comes from our culture. The flip side of people living longer is that we get more diseases that used to be lethal. Saying that puts pressure on the healthcare system isn’t popular, but it’s a needed conversation.
Healthism: health becomes a super-value in society. Saving a life trumps cost — financial, environmental, human. The conversation is about getting to live as long as possible, but we don’t ask what kind of lives we have — 10 more years in a nursing home isn’t worth much. Critics will say “exercise and eat healthy,” but anthropologists say this is not on the individual — it’s about structures. Health becoming such a value you cannot go against it. We’re brought up to think taking care of our own health is the responsible and moral obligation to society — so we won’t be a burden. If you say no to treatment you have to explain why, and you seem irresponsible.
My mom example — she stopped going to mammography screenings after a false positive scared her, but she doesn’t dare tell her friends because it makes her look irresponsible. If she got cancer, they’d say “that’s on you.” We interviewed women older than 70 — they were furious they couldn’t get screening anymore. Screening stops at 69 because cancers in high age develop so slowly we catch them other ways. The women thought going to screenings would prevent cancer (“now that I don’t get screened I will develop cancer because society doesn’t care about me anymore”). Biomedically that’s wrong. Anthropologically it’s revealing — being worth spending money on in healthcare = being worth something in society.
Tension with preventive healthcare and early screening: the more screening you do, the more overdiagnosis you find. You can’t say on an individual level whether a cancer is overdiagnosed until autopsy. Cancer is not just cancer. Four types analogy (Maria’s friendly version): “bird cancer” (flies free, can’t catch), “bear cancer” (dangerous, may catch in screening), “turtle cancer” (so slow it never develops symptoms). You probably have 4-5 turtle cancers in your body right now even in your 30s — you’ll never get symptoms, never die from them. Should we scan for them? Treat them? That is costly in money and carbon.
Finding a cancer this year and treating through a 10-year program when symptoms wouldn’t appear for 10 years means 10 years living as a patient with all the treatment cost — and we cannot say on an individual level. Decisions for sustainable healthcare have to be made on a population basis, which is unpopular, especially given individualism — “make the decision on me, not on statistics.”
The popularity paradox: someone will tell me their aunt found cancer in a screening and was saved. I can never prove them wrong. Just one story makes people say “shouldn’t we save one life?” And I’m the big bad wolf saying “do you know what it costs?” We need to have that ethical conversation. I’m a researcher — I pull out theories and facts, politicians make decisions.
Similar to softer sentences for criminals — evidence shows longer sentences past a point don’t reduce crime, but no politician will say it.
The most effective preventive measure if we want to cut healthcare costs and emissions? Stop people smoking. Cigarette butts are one of the most thrown-out forms of trash with all kinds of plastics, tobacco grown in monoculture — bad upon bad upon bad.
We also have an unwillingness to accept being human. There are limits even with all this technology. Genetic testing: “you have 22% more risk of dying from a heart attack” — what do I do with that? Exercise, eat healthy, stop smoking — the things I already knew.
People push primary care for general health checks. Danish national board of health does NOT recommend them — the Danish study and best medical evidence show no effect on mortality or morbidity. Counter-intuitive to popular wisdom (especially for males).
Why do women see doctors more? Many studies forget — women go for reproduction, contraceptives, and still typically take kids to vaccinations and doctor visits, so they get registered as the visitor. So the “men die earlier because they don’t see the doctor” story is more complicated.
How should we change the culture? Culture always develops. If you want our health culture to develop into a more sustainable future, maybe we need art. My research is hard to comprehend; if it’s told through a story you can understand, more people will be aware. The book is “Snart er vi alle patienter” — published by Samfundslitteratur, won the biggest Danish textbook prize in 2019.
Thank you so much. There’s another episode coming where we focus more on overdiagnosing and overtreatment.