The Quackometer has had some rather unpleasant emails following his criticism of the Burzynski clinic. The issue is that some people wanted to kindly raise money for a child with cancer to be treated there, when the evidence for the proffered interventions is questionable.
Other people have examined the science very well. There is something else bothering me, however. It’s to do with the aims of treatment, and how we spend our time when we know it is limited. I have been struck by this trial in the NEJM, which showed that people with lung cancer who had early palliative care had longer and better quality of lives together with less aggressive interventions. If this kind of care came in tablet form, it would be marketed as a miracle drug. Yet the aims of palliative care – symptom control – are often quite straightforward, based on good relationships between doctor and patient, and perhaps time consuming, but not that expensive.
I’m wondering about this especially because I sometimes think we don’t sit still enough. Chasing cures which don’t exist can distract us from the very important here and now. It might even, as per the NEJM paper, be of benefit to us to consider more about quality of life and less about an elusive cure.
This is something I often think about when patients have ‘last ditch’ chemotherapy. Is it for the best? I’m pretty sure that I personally would want to stop it, come home, drink as much of the best wine and eat the nicest chocolate I could manage, use all my finest bed linen, spread out with my kids at home, watch favourite films, invite as many visitors as I could manage, and use as much morphine as needed.
(Husband: consider that an advance directive.)
The problem is that stopping treatment can sound like giving up or giving in; our language of war on cancer is unhelpful and wrong. Quality of life can sometimes sound prissy. Yet freeing ourselves from the rounds of hospital treatment can be liberating and good for us. Good care can happen without a cure.