Mirjam Oomens: ‘Healthcare professionals should be cautious about survival prognoses’
image: Pexels/cottonbro studio
Mirjam Oomens was working on her PhD research on language in the consulting room when she was diagnosed with metastatic cancer. Four years later, she has made it her mission to encourage doctors and other healthcare professionals to make fewer statements about life expectancy. 'Such a conviction can be detrimental to the quality and possibly the quantity of life.'
As a PhD student, Oomens had been working on her linguistic-philosophical research into the effect of language use in the consulting room for just six months when she was diagnosed with metastatic ovarian cancer. A week later, her husband was diagnosed with incurable pancreatic cancer. He died shortly afterwards, while she was in the middle of her treatment. When asked, Oomens was told that there was an 80% chance that the cancer would return within two years, after which a cure would no longer be possible.
Eighty-twenty
‘Initially, my attention was mainly focused on my husband,’ Oomens says four years later. 'Later, I was able to focus more on my own illness. That's when I started a blog on kanker.nl, where I received a lot of support and responses.' All that time, she lived as if she were in the final stage. ‘That eighty-twenty chance felt almost like a certainty to me. You don't do much that is constructive anymore, you don't build anything anymore.’
But Oomens' cancer did not return at all during the first two years. Slowly but surely, she began to wonder more and more what that two-year prognosis had done to her. 'Ironically, shortly before I fell ill, I had started doctoral research into speech acts in the consulting room.'
Shaping reality
In her research, she looked at situations in which language not only describes reality, but also shapes it. 'A well-known example is that of the referee. If he says the ball is out in a tennis match, it counts as out, even if it was physically in.' The fact that the referee can perform that linguistic act and the angry player cannot has to do with authority. More specifically, the authority to determine what the reality of the players and the audience is from that moment on.
You can also look at the language acts of healthcare professionals in this way. They shape the reality of the patient, not only with their diagnoses, but also with their statements about life expectancy. ‘Those statements are more than a description of what is. In principle, life expectancy is a statistic based on cohorts from the past. Doctors are getting better at applying it to patients, but at best it remains a guess,’ says Oomens. 'A guess with consequences when, for a patient, such a statement made by the authority of the doctor becomes a conviction, an almost unshakeable reality.'
Placebo and nocebo
On her blog, Oomens first linked this conviction to the placebo and nocebo effects known from medicine. ‘The placebo effect is the most proven effect in medical literature,’ she explains. 'Test subjects are given an inert medicine, without any active ingredient, and nevertheless experience an improvement in their symptoms.' The nocebo effect is the opposite: if you are convinced that something is harmful, you are more likely to experience that harm. This effect has been less researched because it is unethical to deliberately make people ill, especially in situations involving life-threatening diseases. But research clearly shows that this likelihood increases with more harmless complaints such as itching and pain. So why wouldn't this also be the case with life-threatening diseases? Does the body stop at the limits of our research?
‘Be careful’
Oomens therefore believes that doctors and other healthcare professionals should be more cautious about giving life expectancy estimates, even when the patient asks for them. 'When you are diagnosed with a life-threatening condition, you go into survival mode. That is not a state in which you can calmly think about what you do or do not want to know about a possible future. There’s also the fact that, during the first consultation, not all the details about the specific patient are known yet, such as genetic factors or tissue examination results. Moreover, it has a major impact on your quality of life: it is incredibly difficult to live with such a poor prognosis. And that is putting it mildly.’
Oomens emphasises that she is not opposed to sharing information. She believes that patients have a right to information, as well as a right not to know something. 'As I said, timing is important. This also applies to emphasising the uncertainty of statistics. Dutch women have an average of 1.4 children, but there is no one person with 1.4 children. You can tell a patient that everyone is different, with their own lifestyle, immune system, DNA profile, you name it. No false hope, but also not taking away all hope. And it would help if doctors, where possible, explained the nocebo effect to their patients. This would enable them to better determine what information they do (or do not) want and make them aware that they do not have to accept a statistical prognosis as gospel.’
Oomens did not complete her thesis, but she is now a guest researcher at the Leiden Centre for Interdisciplinary Placebo Studies and gives presentations and guest lectures in a personal capacity, in which she discusses language in the consulting room with doctors and medical students.