I’ve just read an article by Joanne Kenen, who discusses the ever-difficult question faced by emergency-room doctors of when to raise end-of-life issues with a patient. Because I’ve had a bit of a discussion over at SciBlogs on the issue of how well we communicate about science in general, I thought (it being Friday) that I might muse a bit more on the topic here.
Death is something that we all have to face in the end**, and human nature being what it is, it’s likely that we’ll face that terminal event with varying degrees of equinamity. I believe this is true for doctors and patients alike. (In fact, I’m inclined to think that broaching the subject of imminent death – with the patient &/or their family, is probably one of the most difficult tasks that a doctor must face.) And they’ll handle it in different ways, and the way they communicate about it is part of that.
My mother used to travel down to stay with us in Palmerston North while undergoing radiotherapy during her last illness. However, she never really wanted to talk about the prospect of her dying with any of her children & in fact remained adamant that she was jolly well going to live for quite a while yet up until only a few days before she died. (This was actually quite hard for us to cope with as there were so many things we’d have liked to discuss with her, & yet we never managed it; we just lacked the ability to communicate that to her.)
Anyway, by the last week of her treatment it had become painfully obvious that there was not going to be a happy ending. Because Mum wouldn’t talk about it, I ended up making an appointment to speak with her oncologist about her prognosis. Late to our meeting, he ended up telling me in the corridor that there was no hope & that she had probably just a few days left. Then he went on to his next patient. As you can imagine, I fell apart at this point. The nurses took me aside, sat me down & held my hand (having thrust tissues into the other), & explained that it wasn’t that he didn’t care, but that he didn’t know how to best communicate his concern & compassion. (I don’t know that I necessarily accepted that point of view, at the time, but the nurses’ attitude certainly helped a great deal.)
Now, Mum wasn’t in the emergency room, but the concepts expressed in Kenen’s article still apply:
The patients these doctors and nurses want to reach don’t all need the technological wizardry of emergency medicine. They need someone who can control pain, delirium, or shortness of breath and who knows how to break bad news. Someone who, as Quest put it, understands the gap between emotional expectations and medical realities and can help the family define–and the medical team understand–the goals of care.
Orac, too, has expressed this very well & with a huge amount of compassion.
So I guess that’s part of what I set out to say when I started writing this. And on a larger scale, I think that we really really need a serious discussion of the issues surrounding what our health system can and can’t provide: the idea that we can’t prolong life indefinitely, nor should we try; the concept that (whether we like it or not) there are limitations to what the system can provide; the whole idea of weighing up the costs & benefits of any treatment (eg how do we make decisions about funding particular treatments? If a drug is hugely expensive & benefits only a few, how do we decide whether it should be funded – & if it is, what treaments do we then not offer because we can’t afford them?).
And how do we get to the point where specialists and lay people, doctors and patients, scientists & lay people (& none of these groups are mutually exclusive) can communicate with each other about these things (and others) - rather than past each other – in a way in which everyone gains understanding?
** While I quite fancy the idea of Death as described by Terry Pratchett, that’s just a pleasant fancy. I don’t believe that there’s something more after death. I would just hope that when my family & I need to talk about my impending end, I encounter doctors who are as good at communicating with me as Orac & the doctors described by Joanne Kenen are with their patients.