Another insightful article from Dr Ranjana Sriastava, a Melbourne medical oncologist and writer, encapsulates my recent experience as a palliative care doctor on the frontline between hope and dying in a cancer centre.
The anticipated miracles of cancers dissolving before our eyes are common enough for patients and doctors to push on with expensive, sometimes self-funded treatment (at great cost) in preference to the needed preparation by patient and family for dying. For a patient and family perspective, skip down to the comments after the article and read HugiHugo’s description of his wife’s last months while undergoing treatment.
A patient with widely disseminated and aggressive melanoma having immunotherapy grunted at me in frustration last month. “Listen,” he said, “they are all high-fiving over there in the oncology clinic. Why do you want to talk about end of life stuff? It’s really confusing.” Pretty appalled at the idea that we were giving the patient mixed messages, I was fortunate to be able to do a joint consultation with the patient’s medical oncologist to nut out our different perceptions. Unfortunately for the patient, his oncologist confirmed that the treatment was very unlikely to be a miracle and most patients in his situation would live less than a year. To say that the patient was shocked was an understatement. Had he not been referred to my team for symptom management, this conversation would have happened later – or never.
Evidence is emerging that outcomes of immunotherapy in patients with poor performance status are very unimpressive. Patients with poor performance status had been excluded from initial trials.
Where does the deficit in our communication of hope lie? Is it in the delivery by the doctor? The reception by the patient? A bit of both? How can we accurately respond to the portrayal of immunotherapy in the media and social media as a miracle cure, and allow for the possibility of benefit without downplaying the risks?
An important reminder of the challenges in trying to find balance (and consistency) in the team’s communication of likely treatment outcomes to patient’s and families. I wonder if part of this challenge is also driven by the systemic pressures on clinicians to be finding and promoting the ‘miracle’ cure in an increasingly market driven system. I’m not a clinician of course… but as a researcher I certainly feel that competition for funding and demands from stakeholders can create pressure towards promoting those ‘victories’, and the challenge of maintaining objectivity and balance in assessing and communicating benefits and burdens, whether that be in a medical treatment or (for researchers) a new project/program or policy initiative. I wonder whether there are alternative systems or processes that governments or organisations could adopt, which might instead incentivise balance?