I was shocked to learn at a recent meeting that some clinical geneticists think it's OK to screen patients for underlying cancer risk without discussing the options with them and without seeking their informed consent.
Up to then I'd believed that the clinical genetics specialty was ahead of the game when it came to sharing decisions with patients, so this was depressing news.
The speaker was extolling the virtues of genetic testing for Lynch Syndrome (hereditary non-polyposis colorectal cancer). An estimated 175,000 people carry this gene mutation, making them and their descendants more likely to develop bowel, womb and other cancers. The symptomless condition often goes undiagnosed, but early detection can identify those who might benefit from regular surveillance and early intervention to prevent cancer deaths.
Informed consent? It's good news that there are tests that can help prevent cancer deaths, but deciding whether to undergo screening for a hereditary risk is a tough decision and not something that can be abdicated to a third party, even if they are a knowledgeable doctor.
Most people with bowel cancer will want to do everything possible to help their children and grandchildren avoid it, but they will also want to weigh up carefully the possible consequences of a positive result. Some may opt not to take the test because of concern about inflicting an additional burden of anxiety on their family members. Prioritising quality of life over length of life can be an entirely rational response.
We patients are not well served by those who believe they know what we want without checking with us first.
No doctor can know what's best for an individual without involving that person in a careful discussion of their options, helping them to make a balanced appraisal of the pros and cons. The aim should be to help the patient come to a decision that feels right for them, not to make the decision for them.
Make shared decision-making the norm Those clinicians who believe that sharing decisions with patients is unnecessary labour under two misconceptions – a) that their goals and those of their patients are synonymous, and b) that medical intervention is always the best solution.
This overweening confidence in the medical model is sometimes shared by patient organisations too. Many of these groups came together to campaign for more testing or more treatment for their client group, so drawing attention to harm caused by over-dependence on medical care doesn't sit easily with their raison d'être. It is relatively rare to find a patient-facing organisation drawing attention to the risks of over-diagnosis and over-treatment, unfortunately.
We patients are not well served by those who believe they know what we want without checking with us first, or who assume that we're ignorant and incapable of making sensible decisions. We greatly appreciate what medical care can achieve, but that doesn't mean we want everything it has to offer.
My great hope is that Rethinking Medicine will help to foster a more sophisticated understanding of the limitations of medicine alongside its benefits, what it can't do for us as well as what it can, helping us all – clinicians and patients – to make better decisions together.
Angela Coulter is a health policy analyst and researcher, with special interests in patient and public involvement.