Following on from Brendan McCann’s story about his partner not understanding he had cancer, I wanted to share some useful details from a Dutch ethnographic study of unhelpful collusion between doctors and patients when there is bad news.
The study followed 35 patients with small cell lung cancer (SCLC) from initial diagnosis to death. As background, stage II SCLC has a 5-year survival of about 19%. Stage III SCLC 5-year survival is even lower at 8%.
In the initial consultation, when patients were told that they had cancer, there was “a rapid transition from the provision of bad news to a discussion about what can be done about it. By far the most time and energy was spent on treatment options… the doctor instigated this but .. the patient eagerly complied … When the patient was told that the cancer had returned, he immediately interrupted: ‘What can you do about it, doctor?’”
Throughout treatment and remission, discussions were almost entirely about the planning of chemotherapy sessions, side effects, and test results. Both parties colluded in focusing on the treatment calendar and, at the same time, in ignoring the long term — the prognosis and the likely “shape of the illness trajectory” (when and how patients might get sick).
Doctors frequently used ambiguous words — for example focusing on a ‘clear’ X-ray when they knew full well that the patients cancer had not been ‘cleared’. The offering of second and third line chemo was also very ambiguous. Patients “could not comprehend” that all the work and money involved in the intensive treatment they were offered could be “useless” and did not (usually) result in a cure. Even if doctors “explicitly stated that the treatment was palliative … the curative aura surrounding it gave another impression.”
There is increasing evidence that patients receiving palliative care not only have better quality of life, but some of them also live longer. In other words, while second and third line chemo is intended to be life prolonging, sometimes it doesn’t even do that.
Doctors, patients and relatives might individually have occasional doubts about whether there was going to be a recovery but “they would not acknowledge this publicly so as not to be seen as undermining the others’ trust in future recovery.” With relapses or when fellow patients were seen to be deteriorating, these doubts might be discussed: “But even then, patients and relatives would do their best to adhere to the recovery story to spare each other anguish.”
The optimism sustained by recovery stories “helped patients and relatives to endure the treatment phase”. However, “it was extremely painful when later it became clear that [the] optimism was based on illusions.”
False optimism made accepting death more difficult, even if it was actually imminent. As well as affecting treatment decisions, it hindered the necessary practical arrangements and farewells. Retrospectively, the collusion “was a reason for regret both for patients and relatives.”
I’m not saying here that the brutal truth should be thrust savagely upon patients and relatives. After all, everyone wants to be one of the exceptional people who survive for five years. But I’m not sure the vast majority who are going to die are well served by ambiguities or false optimism. The Dutch researchers certainly think that it would be good to break the cycle of collusion.
They say, “awareness cannot be forced on the patient, it can only be supported. This requires an active, patient orientated approach from the doctor.” In the ‘traditional’ model of curative medicine, (increasingly now) followed by palliation, I think the really difficult bit comes with the transition. So I also think that hospice doctors have it easier than GPs — since they see patients and relatives who have already accepted palliative input.
The Dutch researchers don’t get into this. They end by suggesting solutions to the collusion from outside the doctor-patient relationship, for example: “‘treatment brokers’, people who are trusted by the doctor and the patient and can help both parties in clarifying and communicating their (otherwise implicit) assumptions and expectations.”
This feels a bit like the doctors passing over the hard, dirty work to someone else — leaving them with the technical magic and the fancy (and rare) cures!
And aren’t nurses already used in this way?