'Drugs don't work in patients who don't take them." C Everett Koop, former US surgeon general. That 20 per cent of women no longer take a drug designed to prevent a recurrence of their breast cancer, some five years after initial diagnosis, may seem cavalier (Why many women stop using cancer 'wonder drug', page 5).
But as the thoughts of individual patients show, the issue of treatment compliance can be a complex one. Paula McQueen tells us that “Tamoxifen is my safety blanket”, while Mary O’Connor describes her decision to come off the drug as one where “I didn’t feel I was making a conscious decision, it was made for me because I felt so unwell (due to side-effects)”.
A 2014 survey found that, among Irish adults, forgetfulness is the most common reason cited by patients for forgetting their medication. It found that people with asthma, diabetes and high cholesterol have the lowest adherence to prescribed medication.
The Behaviour and Attitudes survey showed one in 20 patients do not take their tablets because of a fear of side-effects. And about one in five of those surveyed stopped because in their view they did not need the medication any longer. Some four in 10 said having a good understanding of their illness and of how their medication works were important factors in ensuring they continued prescribed treatment.
Communication issue
US research into some 9,500 people with diabetes found that up to 30 per cent of patients were not taking medication faithfully. A significant finding in this study was that patients who gave their doctors poor marks in communicating were less likely to adhere to their medications. Patients clearly need to “buy in” to the treatment decision during a consultation with a doctor.
However expecting “buy in” for 10 years or indeed a lifetime of treatment is probably unrealistic. There is a need to review this commitment regularly. It makes sense that people are more likely to comply if doctors specifically ask about potential side-effects; sensing your doctor cares about whether you are still happy with treatment undoubtedly boosts adherence.
As someone who has been told he must take certain tablets, for a potentially life-threatening condition, for life, I can understand the varied response to Tamoxifen therapy. Side-effects can be disabling and impact significantly on your activities I have experienced sleep disturbance, forgetfulness and muscle pain while taking statins to control cholesterol.
At one point when the muscle aches were limiting the distance I could walk (another essential non- drug part of my treatment plan) I did wonder at the absurdity of one part of the cure being infinitely worse than the disease, while simultaneously cancelling my ability to follow another element of the cure!
Considered decision
It’s at this point that you need to sit back and make a considered decision based on the risk of not continuing medication versus its potential benefits. And I’m not sure that this is something that patients are facilitated to do nearly enough.
Galway continuing medical education tutor Dr Eamonn O'Shea is the author of an Irish College of General Practitioners publication titled Communicating Risk to Patients. In it he makes a key point: "A well-informed patient may choose not to avail of a clinical intervention but this doesn't necessarily mean that the consultation has failed, hence the concept of "informed dissent".The clinician should present information to patients in the most transparent and understandable (rather than persuasive) way and accept that their informed decision on their own care may not necessarily be the one that reduces their risk."
So a well-informed decision by a woman not to continue taking Tamoxifen is not a treatment failure. And my informed decision to switch to a different statin which reduced but did not eliminate side-effects does not represent treatment success. Rather both are an example of what I call “considered compliance”. mhouston@irishtimes.com @muirishouston