How to become the patient Vicky Phelan wants you to be

Cervical cancer victim and campaigner Vicky Phelan has achieved so much in the face of adversity.

Her advocacy is remarkable, especially when you consider she believes she would now be dead, or close to death, had she taken medical advice to undergo palliative chemotherapy, rather than carrying out her own research into new treatment.

As a result, the drug pembrolizumab has shrunk the size of her tumours by over 50 per cent.

Thinking about her story made me wonder how we might enable other patients to better take control of their illness. Some might say it’s a fine line between Vicky’s no-nonsense approach and the growing rejection of scientific expertise we see in the area of vaccination, for example.

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But I don’t see this as a reason not to explore how patients can constructively challenge the medical system.

Fittingly, the first resource I found was Vicky herself. Her speech at Waterford Institute of Technology, on the occasion of her recent honorary conferring, addresses the challenges head on.

She spoke, in particular, of the importance of education and of people having the ability and confidence to challenge what they are told by people such as medical professionals.

“The skills that I called upon that allowed me to figure out that something was wrong and that prompted me to investigate further were skills that are often not taught until students reach third level. These are critical thinking skills,” she said.

For example, she says she used these skills to: question what she had been told by her gynaecologist about the CervicalCheck audit; challenge what she was told when she took the time to reflect on how she went from a clear smear history to invasive cervical cancer, yet “knowing in my gut that something was amiss”; analysing the information on her medical file to find evidence that something was amiss; and evaluating this information when she did find evidence to support her theory that she was misdiagnosed.

However, these skills are not taught in second level education.

As Vicky, herself an educationalist, noted: “What if I had not been highly educated and in possession of these skills?” Indeed where would she be if she was not a trained researcher with a Masters degree?

School syllabus

The fundamental necessity, as I see it, is to make significant changes to our secondary school syllabus. It’s time we saw critical thinking as an essential life-skill to be taught at school.

And while teaching research skills may be a challenge at this level, by moving away from rote learning and an over-focus on examinations, we could introduce self-learning skills to senior secondary students, including self-directed research.

A particular failing of our secondary education system is that it produces students who are unable to assess risk. And I’m not talking here of complex mathematical formulae; rather ensuring that Leaving Certificate graduates can assess everyday, practical risk. For their health, in particular, balancing risks against benefits is a critical skill.

The skill is much more than pure science. The reality for us as humans is that, faced with significant bad news in the form of a cancer diagnosis, we react emotionally. Few of us, no matter what our training or background, possess the sangfroid to be immediately objective.

This is where our perception of risk comes into play. Some of us calculate risk, while others are sensitive to hazards. All of us perceive risk differently. This personal element of risk judgement must be explored during secondary education if people are to engage fully with the health system.

Vicky Phelan wants women to advocate for themselves: “by beginning to ask questions about their bodies, about their health, about their care.”

Her message applies equally to men – encouraging all patients to take back control of their care.

The first step to becoming the kind of patient Vicky Phelan wants you to be is to ask questions of your doctor.

mhouston@irishtimes.com