It’s common for doctors to not be 100% sure about a patient’s diagnosis. But there is a lack of patient-focused research looking at the way this uncertainty is communicated. Historically, doctors would sometimes withhold a certain amount of information about a diagnosis, especially if they believed that it might cause distress (such as in cases where the diagnosis might be terminal). Over the latter half of the twentieth century, though, the focus has shifted more towards open communication between doctors and patients, with emphasis on shared understanding and decision-making.
Ethical discussions about when or if doctors should share information about diagnostic uncertainty with patients often focus on weighing up the potential harms and benefits to the patient of doing so. Doctors look at how not sharing the information might affect both the patient and the healthcare system. Such discussions rely on the effects on the patient of being told, or not being told, certain information – but do we really understand what these effects are?
We aimed to find out how – and what – patients preferred to be told when their doctor wasn’t sure about their diagnosis, and how being told that their diagnosis was uncertain affected them. This study aims to provide guidance on the best way for doctors to talk about diagnostic uncertainty with their patients.
Not all patient preferences are the same, and it can be hard for doctors to work out what an individual patient might want to be told, particularly if they have had no relationship with the patient beforehand.
In our study, the majority of patients are likely to prefer to be told about diagnostic uncertainty, even though this may be more worrying for them – but this preference is not universal. The people who took part in the study had mixed opinions about how they preferred doctors to communicate with them when they were unsure about a diagnosis. We did not find any significant links between patient demographics and their communication preferences. This highlights some of the challenges for doctors in balancing the harms and benefits of sharing uncertainty about a diagnosis and in adapting their communication to different patient preferences.
While it could be argued that doctors should directly ask patients what they want to be told, this approach also creates several problems. Relying on patients to tell their doctors about what information they would like to receive can prove difficult – arguably impossible. If a patient is unaware of something, it follows that they can’t decide whether they want to be told about it. Also, relying on patients to guide doctors in giving them the right amount of information assumes that they know, and can explain, their own informational preferences. In practice, patients don’t always voice their worries: another study in primary care found that patients often keep their concerns about possible diagnoses to themselves.
Our findings will be relevant to clinicians, educators, and policymakers. They offer some evidence for recommendations that doctors should be more open in their communication about diagnostic uncertainty with patients: although giving patients the information might worry patients, they still want to receive it. We suggest that doctors should err on the side of being more open about diagnostic uncertainty: to not tell a patient when there is uncertainty about their diagnosis (perhaps because of well-meaning but paternalistic ideas about not worrying a patient), or to make a decision about how much to tell a patient based on assumptions about how much they want to know based on demographic factors, risks depriving patients of information they may value.
