Why Patients Aren’t Always Right

Patients as experts

Over the past 40 years, there has been a dramatic shift from the expert doctor who should be revered and obeyed to an increasing role for patients as the experts of their own bodies. As researchers, we run patient participation groups before, during, and after our studies; use qualitative methods to hear their voices; and run surveys to gain their feedback. As teachers, we ask patient advocates to share their experiences of illness with our students, and as clinicians, we aim for shared decision-making and gain informed consent before embarking upon any intervention.

This is all great and places the patient at the centre of what we do. It is also increasingly reflected in policy with a desire to give patients a choice over what clinician, what hospital, and what treatment they have. So, what is the problem?

Symptoms are complex

Having a symptom, giving that symptom a name, and taking that symptom to the doctor is not as straightforward as it might seem. Is it hunger? Pain? Tiredness? Stress? Boredom or loneliness? Is it indigestion or a heart attack? Or is it just wind? Can a doctor help, and is it too embarrassing to ask?

Symptoms are perceptions, not sensations, that need to be noticed and named, and this process is influenced by our emotions, how busy we are, our sense of self, and our past experiences of our own bodies, those of our friends’ and families’, and the health care system. We may be experts in how we feel right now, but there may be an error in this feeling. So, when we decide we have a symptom and then choose to take our symptom to the doctor, we need the help of another kind of expert to work out what is going on.

Treatments are also complex

No treatment works for all people all of the time; most have side effects, and even if they do work, they may not work for very long. Choosing which treatment to receive and for how long is also complex and involves weighing up the data for both the immediate and the longer term. Yet patients make their choices about which treatment to take based upon all sorts of data.

We want immediate benefits, regardless of the longer-term costs; we even want immediate benefits regardless of the immediate costs. We are far more swayed by the success story of our friend than the population data of the studies, and we have deep-rooted feelings for or against drugs or surgery that we don’t even know we have. And our ability to weigh up risk is hopeless.

We may be experts on wanting our health to be treated. But our judgment about which treatment to have is so clouded that another, more objective view is always helpful.

Doing nothing is difficult

And then there is always the option of doing nothing. This is sometimes called “watchful waiting” when doctors decide to take their time and see what happens. It can also be called “harm reduction” when the side effects of care outweigh the benefits.

Sometimes it is a matter of quality of life over quantity when the extra days or weeks gained no longer seem worth it. And sometimes it’s about letting someone die in their own time in peace and with dignity. Doing nothing is a hard choice when something is available, and saying “No” is even harder when that something has been offered. And all our emotions, beliefs, and management of risk most often lead to “Might as well give it a go,” “What harm can it do?” and “What is there to lose?” We may be the experts of our bodies, but sometimes we need another expert to tell us that doing nothing is the most expert thing we can do.

So, is there a problem?

Patient-centered care puts the patient at the heart of the health care system, where they can influence what research is done and which treatments they are offered. Not a problem.

Patient advocacy gives patients a voice and raises the profile of how patients feel and what is important to them. Also, not a problem.

Patient choice enables patients to have a say in the treatments they accept. A bit of a problem. Why?

Patients feel their bodies, but these feelings are complex and can sometimes be inaccurate. Patients may also know what treatment they want to choose, but these choices are also sometimes clouded and full of bias. And very often, patients don’t know what treatments they don’t want to have—saying no doesn’t come easily. By giving patients too much choice, we may be doing harm to the patient. But we are also harming the health care system.

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Patient choice may empower patients. But it might also lead to more investigations for symptoms that were nothing (it was just wind after all), to more referrals to specialists for symptoms that would have just gone away (again, it was just wind), to more treatments that don’t work (turns out my friend was just the lucky one), to treatments that do long-term harm (I didn’t think that far ahead), and to treatments that don’t even have short-term benefits (I should have said no). And all the while, the health care system could be streamlined (and cheaper) as we cut out all those whose job it is to triage patients and help them make better decisions. And no patient can ever complain, as it was “their choice” at the end of the day.

Too much choice can sometimes be a bad thing.