Sufferers within the twenty first century are fairly fortunate. Medical science and know-how have superior a lot that we will diagnose many hundreds of distinct circumstances, and we will even take genetic exams that scour our DNA for indicators of a illness that will not materialize for many years — providing us a peek into our personal future.
And with these advances, we’re being identified increasingly. The variety of folks identified with power well being circumstances and psychological well being problems is at an all-time excessive — no less than partly, most consultants agree, as a result of now we have merely catalogued extra ailments to catch.
But we’re additionally more and more anxious, anxious about our well being — even anxious that we’re too anxious about our well being. Our means now to know our our bodies and put a reputation on what’s improper with them doesn’t at all times present consolation; as a substitute, it may well create new fears and impose new constraints on us. Some well being care leaders, together with Donald Trump’s well being secretary, Robert F. Kennedy Jr., argue that we have gotten over-medicalized — too able to take a capsule for one thing, only for the sake of taking one thing.
The truth is nuanced as a result of medication is, to place it mildly, sophisticated. However we should always actually watch out about doling out diagnoses, says Dr. Suzanne O’Sullivan, an Irish neurologist and the writer of a brand new guide, The Age of Prognosis: How Our Obsession With Medical Labels Is Making Us Sicker.
In her guide, O’Sullivan argues that our eagerness to diagnose, preemptively display screen, and in any other case push these new instruments to their limits is creating issues that should be taken extra critically. She describes mutually reinforcing developments — the affected person’s insistence on certainty and the physician’s need to keep away from being blamed for lacking one thing — which are driving scientific observe towards overdiagnosis. The phenomenon is even resulting in extra situations of docs diagnosing sure cancers by 50 % or extra, because of the availability of latest imaging tech that may detect even minuscule traces of irregular cells.
Overdiagnosis could cause actual hurt. And so O’Sullivan advocates for “gradual medication,” wherein docs and sufferers take time to develop a relationship, monitor signs, and take a substantial amount of care earlier than naming a situation — an method that will sound quaint in an period of rapid-testing however one thing she says is definitely extra in tune with the truth that prognosis is partly an artwork.
“Most diagnoses include an enormous quantity of uncertainty. That covers bronchial asthma, diabetes, most cancers, autism. Prognosis is a scientific ability,” she advised me in a current interview. “Now, the problem, I believe, with trendy medication is lots of people don’t perceive that and that they really feel that the check — the blood check or the mind scan — makes the prognosis, when really a prognosis is made on understanding the story within the context of the exams which are carried out.”
There’s a pressure right here. Slowing down may, no less than in idea, threat lacking an aggressive illness early on the most vital time — when it may well nonetheless be handled. And in the US, merely getting a health care provider’s appointment could be more difficult than it needs to be.
Every particular person case is exclusive, O’Sullivan acknowledges, which is why a relationship with your personal main care physician is so essential. However she argues that, on the entire, docs have erred too far within the different path, towards diagnosing circumstances too shortly and too confidently and creating a distinct set of issues for sufferers. Throughout our dialog, we spoke about the way to stability our large new technological talents with a extra measured method to scientific observe and the way she would reply to critics who argue her recommendation would result in folks’s well being issues being missed.
Our dialog has been edited for readability and size.
First, let’s make clear one thing fundamental. What do you imply by overdiagnosis? How do you outline it?
I consider overdiagnosis as measuring the purpose at which a medical prognosis ceases to be helpful. A prognosis could also be proper or it could be improper, but it surely isn’t at all times useful in a sure scenario. Overdiagnosis is making an attempt to ask when a prognosis is genuinely a helpful method of conceptualizing somebody’s difficulties, and when it isn’t.
The primary chapter is about Huntington’s illness. Why did you begin there?
There’s a genetic check obtainable for Huntington’s illness. Should you occur to have the gene for Huntington’s illness, you’re destined to get Huntington’s when you dwell lengthy sufficient. You probably have the genetic check, you will discover out forward of time that you’ve got that sooner or later in your future.
I wanted folks to know the ability of a prognosis to make you sick even once you really don’t have a lot bodily improper with you. I inform the story of a affected person named Valentina, who didn’t have the gene however believed that she did due to her household historical past. Due to her sturdy perception that she had the gene, she developed all of the signs.
Once we tackle a medical label, after we are advised that we’re sick indirectly, we inadvertently search ourselves for the signs and indicators of the label that we’ve been given. Our our bodies are very noisy engines. There’s all kinds of issues to note if you’re given purpose to note.
The Huntington’s illness neighborhood is on this unbelievable scenario the place they’ve the chance to search out out they’ve a prognosis 20 years earlier than the illness begins. And in most nations, solely 10 % to twenty % of individuals even have the genetic check that may advise them of the illness. They try this as a result of they’re a neighborhood who has given a substantial amount of thought to what it’s wish to dwell with the label of an impending illness.
When you uncover you’ve got a optimistic check, it fully modifications your relationship along with your physique. It modifications how you consider your well being. And as soon as you already know, you possibly can’t unknow. I spoke to a great deal of folks with Huntington’s, they usually all mentioned the identical factor: that dwelling with the hope that you’re adverse and that all the pieces is okay is a method higher life than dwelling with the information that you simply’re optimistic and ready for the illness to start out.
Probably the most fascinating themes within the guide is this concept that folks need and have come to anticipate concrete solutions from trendy medication. Black or white: You have got a illness otherwise you don’t. However you cowl power Lyme illness, lengthy COVID, and autism, these circumstances the place the boundaries are fuzzier. What issues does that create?
Most diagnoses include an enormous quantity of uncertainty. That covers bronchial asthma, diabetes, most cancers, autism. Prognosis is a scientific ability. It requires an excellent clinician to have the ability to put the affected person’s story within the context of exams and findings.
Now, the problem, I believe, with trendy medication is lots of people don’t perceive that and that they really feel that the check makes the prognosis, the blood check or the mind scan, when really a prognosis is made on understanding the story within the context of the exams which are carried out. That implies that prognosis is vastly subjective. I hear plenty of tales of individuals going to completely different docs who mentioned I didn’t have a prognosis, however then the eleventh physician mentioned I did have it.
There’s an inherent subjectivity that docs will handle in another way. I’m a health care provider in a extremely specialised heart, and I intentionally err on the facet of slight underdiagnosis. I try this as a result of I’m conscious that once I make a prognosis of a mind illness, I’m altering that particular person’s future without end.
I’m not simply altering their relationship with their physique. I’m additionally altering their mortgage funds, their insurance coverage, their confidence in themselves, their means to get medical health insurance. I’m altering their funds, their sensible future. I’m altering their means to drive. There’s so many issues that include the prognosis that folks don’t take into consideration.
What many, many docs do is that they err on the facet of overdiagnosis as a result of that[‘s an easier place for a doctor to be. Because you’re never going to come back to me and say, “Listen, I don’t really believe I had asthma when I was a child.” You’ll say, “Well, listen, I had it. You treated it and now I’m better.” It protects us against someone coming back and saying we missed something.
I came into this book thinking that something like cancer would very much be more of a yes or no. You either have it or you don’t. And if you do, you really would want to know about it — as soon as possible.
And yet, after reading your book, I felt like you had complicated that story. How do we risk overdiagnosing cancer?
Within the medical community, this has been well-known for a long time, but it just doesn’t leak into the general conversation. The bottom line is if you screen healthy people for an illness, any illness, be it cancer or high blood pressure, diabetes, then you will be picking up borderline cases and overtreating them.
In the case of cancer, I try to remind people we’ve only had MRI scans in regular clinical use in doctors’ offices since the 1990s. They’ve only been as good as they are now in the last 10 years, as sensitive at picking up things. As we get these newer tests, we’re finally seeing inside the healthy body of people.
What we find when we screen people for things like cancer is we find abnormal cells. But not all abnormal cells go into cancer. Lots of people live out their lives having these abnormal cells. They never spread. They never do anything. They never grow. They would never threaten health. But our difficulty as doctors is because we’re so new to finding all these irregular abnormalities that when we find them, we don’t know which ones will turn into malignant cancers and which ones won’t.
So what we do is we treat them all as if they will inevitably turn into malignant cancers. One Cochrane Review estimated that if you screen 2,000 women for breast cancer, you will save one woman’s life from breast cancer and treat 10 women for breast cancer who never needed to be treated.
I think sometimes we’re very in love with all of our access to screening tests and scans and health checks. A lot of that care is not only unnecessary, but actually doing us harm.
One estimated that if you screen 2,000 women for breast cancer, you will save one woman’s life from breast cancer and treat 10 women for breast cancer who never needed to be treated.
Obviously being able to better more precisely diagnose conditions and to test samples at a genetic level represents advancement in science and an improvement in our understanding of our own body. How do we encourage that kind of development while mitigating the problems that you’re writing about?
I work with people who’ve got rare brain diseases. The advancement in genetics and the ability to diagnose rare genetic conditions is amazing. I don’t want to in any way detract from what a phenomenal kind of medical advancement that is. I have no doubt that going forward in 20, 30, 40 years, it will continue contributing to science and to medicine in very positive ways.
How to talk to your doctor about “slow” medicine
O’Sullivan’s book is not a self-help guide, but after reading it, it’s easy to come up with some strategies that could help each of us bring a “slow-medicine” sensibility to our next doctor’s appointment and potentially avoid overdiagnosis. Such as:
• Set expectations with your doctor. Make clear that you don’t want to be quick to judgment or treatment.
• Press your doctor to get a better sense of how confident they are in a diagnosis, what could change their mind, what additional steps could be taken to double-check.
• If you’re really worried about something, speak up. Slow medicine means being thoughtful — not ignoring what your body is telling you.
But something being modern and expensive and cutting-edge doesn’t mean it’s always better medicine. We need to be a little bit more open with the general public about the uncertainties.
We’ll never understand the meaning of different genes to healthy populations if we don’t test them, so we need to do the population-based testing. But we need to be careful before we begin offering genetic tests to unsuspecting members of the public who probably think we understand them a great deal better than we do.
We’re really on a learning curve at the moment. A little bit more clarity and honesty with the public would go a long way.
How would you respond to somebody who hears we should be testing less and diagnosing less and immediately thinks, “Well, you’re just going to put my health at risk.”
Listen, I don’t want a diagnosis missed in myself. I don’t want to be the doctor who misses things either. So I completely understand people’s fear of dialing back.
It’s not about replacing all these tests with nothing. It’s really advocating for this concept of slow, thoughtful medicine with good clinicians that we invest in good doctors, good nurses, good diagnosticians, and we don’t feel the need to be compelled to jump into tests and diagnosis at that first meeting. We have time to spend with our patients and meet them again to discuss the problem. That’s how you come to both a good understanding between patient and doctor. A quality diagnosis is made with time and understanding.
I often find when I meet my patients for the first time, I don’t fully understand the story. I love to see how that story unfolds in subsequent meetings. So I’m not asking people to give up medical tests and labels and replace them with nothing. I’m asking that we improve our clinical skills and we meet people lots of times to improve the quality of diagnosis.
