Why can’t we engage more people in future care planning?

By Dr Joseph Hawkins, Consultant in Palliative medicine and end of life clinical lead, Ashford and St Peter’s Hospital. Twitter: @JoeHawk75825077

It seems to me that planning ahead is a little like eating your five fruit and veg a day. We all know we should do it, but it’s still difficult for many to do.

Planning for end of life care is important, but despite almost all agreeing on this, few of us manage to do it; so… how do we improve rates of future care planning?

At this point I should probably start offering some answers. However, it occurred to me some time ago that I’m not very good at answers. This will hardly be a revelation to many. My inability to provide answers came in to focus recently when talking with some cardiology colleagues.

Cardiology is a specialty that provides answers; whilst it seems to me that palliative care mostly provides more questions. It was whilst talking with these colleagues that it seemed they wanted answers to questions like: ‘when should they refer to palliative services?’

Unfortunately, the answer that immediately came to mind: ‘when they want you to/when you want to?’-felt like it wasn’t going to cut the mustard. Which was a shame, as when I’m talking with patients they seem to quite like me providing some information followed by a question, such as: ‘how do you feel about that?’

So why should it be that asking questions rather than providing quick answers is harder for doctors and other health care professionals than it is for patients?

It seems to me that we do our colleagues and maybe the public too, a disservice when it comes to assuming that answers are better than questions. Perhaps we are all simply too busy, too stressed and therefore answers provide direction and simplicity in a complex world.

But when the answers are too simple for the question should we still provide them?

Or should we ask people to question themselves and in so doing to arrive at an answer unique to the moment that they find themselves in and the question that they pose.

For example: when my colleague asks me ‘when should I refer to you?’, should I then ask them: ‘do you feel that palliative care can help the problems this person faces?’ I’d suggest that this approach is more inclusive than any criteria that attempts to provide the answers in advance of a situation. Importantly, this approach doesn’t pre-suppose my also asking the same question- and if I don’t agree that palliative care is right for this individual then the subsequent conversation is rarely wasted time.

Perhaps the issue with future care planning is in assuming that answers are better than more questions. Or at least that having questions answered on paper will fit many people. I’m pretty sure that this isn’t the case for many things in life and so why would any of us assume that it is the case when faced with death?

When talking with my cardiology colleagues I realise that some of the boundaries to referral are preconceptions but it seems that it is conceptions that will break down those boundaries best. In this case I mean recognising that we complement one another’s services in the way we approach problems and in the way that we each offer different questions.

Perhaps then the best way to engage people with future care planning is to start with how we frame this important concept. There are moments when writing answers is appropriate to simple questions but there are many more questions that can’t be answered easily or contemporaneously. Talking through the question is perhaps more important than the answer will ever be.

Of course I speak from the perspective of a specialist in Palliative Medicine but these topics: future care planning (or Advance Care Planning, if you prefer), are ones that should effect all practitioners, even cardiologists.

Will there be a revolution where we one one day find ourselves asking people if they wish an ACP document, or a digital recording of questions, or a pack of Flashcard questions? I don’t know, what do you think?

Addendum:

The author is working on a pack of future care planning flash cards available for all, if you’d like to hear more or get involved then please contact Dr Hawkins directly.

Reference:

https://blogs.bmj.com/spcare/2022/05/02/diagnosing-dying/

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