Just sit with me

The Lancet commission on the value of death has published a report (link here). It’s supposed to bring ‘death to life’. I learnt about it on Twitter where one of the recommendations of the commission was applauded. The recommendation was that difficult conversations be renamed essential conversations. Gosh, I thought (sarcastically), just don’t set the world on fire with your radicalism. Here are a few comments on what the commission has to say about difficult conversations.

Rarely have I written posts where I had to contain anger when writing. I have toned down this post a number of times. I hope I have managed to turn it into a polite intervention. But I really would prefer to shout a few expletives.

When I was reading the section on conversations, I immediately thought about the movie Enter the Dragon. There is a scene where Bruce Lee’s character describes his fighting style as the art of fighting without fighting. I thought, the report’s section on ‘difficult conversations’ was similar – it’s the art of saying without saying. Indeed, the commission has very little to say about conversations about death.

A lion’s share of the section is devoted to explaining why conversations about death are difficult. The obstacles are legion: busy doctors, collusion with family, culture, cognitive impairments. The Commission makes a whole list of reasons why it’s hard to talk. And even though it does not venture beyond the obvious, the list is well made. But then it says that such conversations need not be difficult. And you would think immediately, you will be reading a whole lot of strategies how to navigate the long list of difficulties.

Well, you would be wrong. The only solution which is offered is… to change the name.  All they offer is to call difficult conversations  essential conversations (Twitter under the hashtag #valueofdeath applauded wildly!). I immediately wondered how that momentous change will help overcome dementia, or perhaps cultural taboos prohibiting speaking about death directly. No? Perhaps this important change will make busy clinics or wards less busy? No? Oh, ye of little faith, have you already forgotten that language matters and all that stuff? Change the name and you change reality. Surely, it works like that. No?

But, as ever, things are more complicated. For the Lancet commission does offer more. It offers Atul Gawande’s guide to difficult, pardon me, essential conversations. As I quite liked his book, Being Mortal, and with some relief I acknowledged that his Twitter bio doesn’t have the word ‘dilettante’ any more, I thought help was at hand.

So, the Commission recommends the following questions ‘as a frame’ (no idea what that means). for the ‘difficult conversations’:

  • What is your understanding of where you are and of your illness?
  • What are your fears or worries for the future?
  • What are your goals and priorities?
  • What outcomes are acceptable to you?
  • What are you willing to sacrifice and not?
  • And later, what would a good day look like?

And I thought, hang on a second, that’s the solution? Really?! For pity’s sake, really?

This is not a guide to a conversation; this is a guide to an interview. The Commission offers nothing, absolutely nothing for the doctor who might want to learn how to speak to a patient who is dying. Gawande’s questions are hardly dying-specific. You can ask them in any shared-decision making context, from catching a cold to, yes, decisions about dying.

Extraordinarily, the Lancet Commission, after listing all those obstacles to talking about death, is unable to go beyond them. The commission is as unwilling, perhaps as scared, to mention death as those they admonish. They hide behind generalities, preferring not to offer anything beyond an obvious list of nothings. Let me put it differently. If I am a dying patient and I don’t want to talk about death and dying, let alone accept it, you still have no clue how to talk to me. How to tell me I am dying, how to inform, support, explain. You’re still on your own – apart from a tap on the shoulder, the report is a wall behind which the Commission hides.

So, I guess congratulations are in order, Commission. You have manged to say nothing. The art of speaking without saying anything. Well bloody done!

But let me offer a brief critique of the questions themselves. For, as ever, they are showing medicine is incapable to simply talk to a patient, a human being. Very briefly, then, here are some additional comments.

1. Outcomes. Only medics think of outcomes. Normal people don’t. I find it extraordinary that after decades of attempting to get medics to talk like human beings, the medical frame stands fast. It’s outcomes or death (pun intended), it seems.

2. Nouns. Why can’t I understand, be afraid, want something? Why do I have to have understanding, fears or worries, goals and priorities? What makes it more appealing to you when you speak about things, not processes? This incessant drive to turn every sliver of human experience into an object for medical inspection is incredible. And all that with the ‘language matters’ mantra repeated over and over and over again.

3. Presuppositions. Your questions have hidden assumptions (presuppositions) which are both counteruseful and irritating. Why do you assume that I have goals and priorities? Why do you assume that there are outcomes which I find acceptable? What makes you think I am willing to sacrifice anything? Should you not ask about those things  first? You know, something like:

  • Are there acceptable outcomes?
  • Are you willing to sacrifice anything?

Perhaps for once you will see that the so-called ‘closed questions’ are useful and important.

4. Good day. That was the question that I thought was problematic (this is the section that took quite a beating after all the toning down).  What happens if I say:

  • A good day is when my son and daughter phone me.

What will you do then with your pompous questions? Will you ask them to phone? Will you make sure they’re by my side? If not, for pity’s sake, don’t ask me questions that will make me even sadder, even more desperate.

So, let me make a more general comment. All the Commission’s (and Dr Gawande’s) questions are founded on the assumption that I will play ball. I will happily respond to your questions, ever more willing to share with you my experiences and  wonderful narratives, which will make you feel so good about yourself. And you will be able to tick all the boxes certifying that you are a wonderful, wonderful clinician.

And I would like you consider asking me at least one little question based on the assumption that I can say no. Uninterested. To be blunt, a question to which I can tell you to f… off. Then, and only then, we shall have a proper conversation. Alas, that you are incapable of doing, it seems.

I hope it’s fairly clear why I think that the proposal to rename difficult conversations should be treated with anger (I wanted to say other things but the toning down took care of it).

Instead of offering a better interview guide, I’ll re-tell a story. I recall sitting at an interview. The interviewee was an experienced psychologist working with patients at the terminal stages of their cancer. I asked her how she worked with them on a daily basis. She looked at me with some surprise, and said something like:

  • What can I do? I just sit with them.

I thought it was a brilliant answer. No pomposity, no need to relabel things, just the promise of being there. That would be a culture change to strive for.


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