Misdiagnosis causes more than three times the number of deaths as road fatalities in Australia each year. But patients can take steps to avoid incorrect or uncertain diagnoses and the consequences.

When we go to the doctor’s office with a health issue, most of us want to know what’s wrong and how to treat it. Unfortunately, doctors don’t always know. And they might not even tell us they are uncertain about a diagnosis.

This communication breakdown between doctors and patients can lead to missed, delayed or incorrect diagnoses, which is the issue at the heart of about half of malpractice claims against general practitioners.

Each year in Australia, there are an estimated 140,000 cases of diagnostic error, with 21,000 people being seriously harmed. Between 2,000-4,000 people die every year due to misdiagnosis, which is up to three-and-a-half times the number of deaths (1,193) on Australia’s roads in 2022.

But if a doctor is not communicating their uncertainty, how can you tell there might be an issue? Here’s what to listen out for and the steps you can take.

What do doctors say when they are uncertain about a diagnosis?

Through our review of the communication of diagnostic uncertainty in primary care, we found that when doctors are uncertain about a diagnosis they can express it in various ways. For example, they might make obvious negative statements such as ‘‘I don’t know”.

But doctors can communicate their uncertainty in more hidden ways. If you hear “I think”, “maybe” or “could”, if they ask you to repeat your symptoms, say they need to talk to a colleague or just talk to you about what you don’t have without further explanation – these could all point to your doctor not knowing your diagnosis.

Uncertainty is a common hallmark of medicine and not the fault of the doctor or a lack of knowledge on their part. But when doctors aren’t clear about uncertainty, patients may feel frustrated, unheard and that their symptoms are being dismissed.

Often patients who feel dismissed or that they’re not being listened to also feel they are not justified in seeking medical attention at all. They don’t want to feel like they are wasting a doctor’s time, even when symptoms persist.

This can have real-life consequences. We found that the most common symptoms associated with doctors expressing diagnostic uncertainty were fever, chest pain and abdominal pain. These are symptoms most of us have experienced before, but they are also related to ‘the big three’ life-threatening conditions, namely cancer, major vascular events such as strokes or heart attacks, and infections that can lead to sepsis.

Left undiagnosed or misdiagnosed, these conditions can lead to serious harm or even death.

Communication breakdown between doctors and patients can lead to missed, delayed or incorrect diagnoses. Photo: Chinnapong/stock.adobe.com

So how can you advocate for yourself?

Prepare questions and set an agenda. It is a good idea for you to prepare and bring a list of questions or priorities to your next visit. You can even open the consultation by saying “I have a list of my concerns here that I would like to discuss. What is worrying me the most is X.”  Your doctor might be able to alleviate your fears there and then, or you can work together to decide on a plan and think about what to do in future consultations.

Ask for next steps and alternative diagnoses. You should always ask what the next steps are in case symptoms get worse or change. Regardless of whether a doctor confidently provides a diagnosis and treatment, or is uncertain, you should have a plan for if things change and take a watchful approach.  You should also feel free to ask “What else could it be?” to challenge doctors’ sometimes faulty thinking patterns.

Have an audit trail. You can keep notes about your health care encounters for yourself and can ask for access to your medical record, including copies of test results or other investigations (for example, medical imaging reports). Having copies of your medical record and previous test results is also helpful when seeking a review or second opinion.

Bring a second pair of eyes and ears. When patients visit a doctor, especially when it’s an emergency, they tend to be feeling unwell and in a vulnerable state. Having a companion may help because they can act as an advocate for you and take notes for later reference.

Escalate your concern. Most hospitals now have escalation procedures for patients to trigger a medical review. In New South Wales, the REACH Program (Recognise, Engage, Act, Call, Help is on its way) offers a way for hospital patients or caregivers to escalate concerns. For example, reviews can be requested when a parent feels their child is not being treated as they should and parental concerns dismissed.

Seek a review or second opinion. Getting a review or second opinion can take time and cost more – so not everyone has the luxury of seeking one. But if you’re able, consider doing so. You can then take any change in diagnosis back to your first doctor. Oftentimes there is no feedback loop for doctors, and they will not know if a diagnosis they made was correct. Patient feedback can help doctors learn more about their diagnostic accuracy. 

The review referenced in this article was co-authored by Mary Dahm, William Cattanach, Maureen Williams, Jocelyne Basseal, Kelly Gleason and Carmel Crock, and is available online.

Top image: Chinnapong/stock.adobe.com

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