GENERAL MEDICINE

The importance of keeping an open mind

Being too dismissive of patients’ concerns about treatments limits our potential for growth as doctors

Dr Cristina Warren, GP, Dublin, Ireland

June 4, 2021

Article
Similar articles
  • The code of silence is deeply ingrained; it is a consistent message in popular culture and takes hold at a young age: No one likes a ‘rat’ or a ‘tell-tale’. If being an informant in mob movies has serious consequences, they are nothing compared to the reprisals in the schoolyard. 

    In less dangerous arenas of society, it is recognised that reporting things is important. So instead of ‘snitches’ and ‘grasses’ we now talk about ‘whistleblowers’ and ‘concerned citizens’. But despite the rebranding, it’s still a hard cultural norm to shake. We love to complain but we don’t like to complain officially. It all feels a bit too personal. 

    Recently I have been inundated with queries about unusual side-effects from the various Covid vaccines and my attitude is changing – I’m coming to realise that it can actually be liberating to have these concerns properly investigated. Substantiated or disproven, this is ultimately fairer to the subject of the complaint. In these days of fake news and militant anti-vaccine sentiment there is nothing more reputationally damaging than a suspected side-effect being too quickly dismissed in the doctor’s office only to find an audience elsewhere.

    A good friend of mine, one of the most carefree, unburdened souls I know, has a penchant for reporting any and all concerns. I suspect that it’s one of the reasons that she is so carefree. She believes there is a pathway for most things; a solution, a phone number. It’s an attitude that has garnered mixed results. 

    On the positive side, she once spotted a dosing error on a paediatric antibiotic prescribing resource – making several emails and telephone calls to get it amended. On the negative side, sometimes she gets it wrong. She recently mistook gluttony for salmonella and reported an innocent restaurant to the Food Safety Authority. Thankfully, detailed history-taking revealed that her upset stomach was from eating too many Easter eggs. Chocoholism has real life consequences. I internally groaned as she told me about it, blushing at the idea of raising a false alarm that had the potential to close a small business. But she was right. There is never anything wrong with raising concerns that can later be dispelled. How many of us know someone – or have been someone – who suffered from food poisoning and didn’t raise the alarm despite the dangers it might pose for other more vulnerable persons?

    So you can imagine my surprise to learn that more recently my friend has refrained from flagging her concerns. She is recovering from cancer. She has been left with a constellation of relatively minor negative symptoms after her chemotherapy. They were so small she was too embarrassed to bother her oncology team in the public system. She rationalised that with their limited resources they only had room to make cancer their primary focus. But these side-effects have had a real impact on her quality of life, so who’s job was it? Ultimately, she went privately to speak to a couple of specialists who aggressively treated her symptoms and she has since greatly improved.

    The conversation I had with her was a real eye-opener. Often people come in with ‘minor’ complaints after cancer or cancer treatment and because I am at a loss I subconsciously default to an inappropriately defensive attitude: you’re alive, aren’t you grateful? The conversation with my friend recalibrated things for me. After all, what’s the good in being alive if you’re miserable in the body you’ve been left with? Especially if you can do something about it. 

    I wonder if part of the reason she didn’t speak with her treating doctors is because she knew they wouldn’t be able to assist her. Perhaps they, like me, didn’t think there was a whole lot that could be done. 

    In general practice we pride ourselves on clever fixes for the minor irritations in life but this is an area where we also fall short. The amazing local cancer support services that exist in our communities often have far more practical information to offer than we do. 

    There are obvious parallels to be drawn with the side-effects of Covid vaccines. From debilitating tinnitus to tingling fingers to the more ineffable “I just haven’t been right since”, it’s hard to know what to say, and harder again to know what can be done. I’ve been too dismissive about side-effects that I haven’t heard about or don’t think I can do anything for. 

    Saying “it could have been worse if you got Covid” is not good enough, just as it isn’t good enough to tell cancer survivors that they are lucky to be alive. Shutting down these conversations limits our potential for growth as doctors. We must continue to pool our collective knowledge and reach out more to alternative resources to learn how to proactively deal with these issues. 

    We should be encouraging patients to speak up and have their experiences officially counted by reporting to the HPRA. After all, the squeaky wheel usually gets the oil. If, as a population, we continue to be reluctant to report things, how can we ever hope to help? 

    © Medmedia Publications/Forum, Journal of the ICGP 2021