Hoping for the best. Planning for the worst.

Advance Care Planning during the Coronavirus Pandemic

Every year we have conversations with a number of our patients about what’s important to them about their future care should they become unwell. In the last few weeks, courtesy of coronavirus, we’ve been having a lot more of those conversations than usual.

If you haven’t thought about and shared what might be important to you if you became seriously unwell, we hope this page might help a little.

Now… this is most definitely NOT a conversation we’d usually start with a leaflet, or a web page or have by phone in normal times but nothing about this pandemic is “normal”.

We’ve been asked to have these conversations with as many of our “at risk” patients as we can. We hope you’ll understand – these aren’t normal times for any of us.

What’s normal?

At any given time, a number of our patients will have progressive, life limiting conditions for which modern medicine doesn’t have all the answers.

As the illness progresses, the goalposts start to move and the priorities we agree with you become less about quantity, and more about quality of life. If we can’t cure, or if the cure feels worse than the disease to you, what can we do to ease?, what can we do to increase quality?

Sometimes it’s a single condition – an incurable cancer, severe heart or lung disease, advanced dementia or a disease like Parkinson’s or Motor Neurone. Sometimes it’s a bit of everything – a body and a mind which has become frailer with each passing year. In many ways, it doesn’t really matter which – it’s about making the best of the hand life deals you and deciding how you want to play it.

Probably the key bit in “normal” times is that we can usually “see the enemy coming”. Between us we can judge when it’s the right time to talk and there’s usually time to start, to stop and to re-start or not the conversation. With coronavirus, the enemy is invisible, less predictable and the timescale may be much shorter.

Why might things be different now?

It’s important to say that the majority of people who develop Covid-19 will have a mild illness.

That said, we’ve all seen the headlines and we know that for some it can be a significantly different story and we know that those with underlying health problems, those who are more frail and those who are older may do less well if they catch it and become unwell.

If you did became seriously unwell, and we needed to talk to you about what might be important to you, we’d much rather do that now while you’re well and can take time to think things through, to read, to talk things over with your family and to ask questions.

With coronavirus, the timescale may be much shorter and we really don’t want you and your family to have to start those discussions when you may already be quite unwell. These aren’t conversations to rush.

So… what’s Advance Care Planning?

ACP in the jargon. Basically, it’s what it sound like.

It’s talking through and planning what’s important to you about your future care.
It’s talking through any questions you might have.
It’s talking about what we know for certain and equally what we don’t.
It’s talking about what you hope, might be worried about or fear.
It’s talking about what you might want to happen and equally what you may not.
It might include thinking about what you might want “just in case” or about resuscitation if your heart or breathing stopped.
It’s making some plans so everyone knows what’s important to you and what “the plan” is.

It’s about talking through your wishes with those closest to you and, when you’re ready, turning those conversations and planning into a plan i.e. a written record of your thoughts and priorities about your future care.

We’ve always said that good care planning means better care both for our patients and for their families. Covid-19 doesn’t change that, it just makes it a bit different and perhaps a bit more urgent.

If I wanted to talk about advance care planning, what should I do?

https://advancecareplan.org.uk is a great place to start, particularly their videos.

You might have a power of attorney already in place and have talked through some of these things with your family members/ attorney? If you do, have you given us a copy? Have you told us what you’ve discussed? It’s surprising how often we don’t even know you’ve got one, never mind who has it, how to contact them or what it says. The same goes for living wills and conversations you’ve had with family about what’s important to you or what you’ve decided.

If you’ve got things in place or already decided… can we help you to check that we know about and understand what’s important to you?

You might want to think about your general health over the last year or two – what’s the same, what’s changed, what remains easy, what’s become harder.

There are tools like https://www.managingmds.com/content/Clinical_Frailty_Scale.pdf which some people find useful as a benchmark and which we’re asked to consider using when helping you to weigh up options during this pandemic.

You might want to think about your own experiences of serious illness and end of life care with family members and friends – what do you remember, what worked well and equally what didn’t?

You might want to think about where you might want to be if you became seriously unwell? Would that be home? Would that be hospital? Would that be a hospice? What might make you decide one way or the other? Who might you want to be with you? What might need to be in place to support you or them?

You might want to think about what you feel about an attempt to resuscitate you if your heart should stop beating or you stopped breathing. It’s quite different from what we see in films and in “Holby City” and https://talkcpr.wales is a website you might find useful.

There’s not a standard list of topics or questions – it’s about what matters to you.

Probably the biggest thing we’d want to bear in mind would be this. The NHS has been here for you and all our families for over 70 years. As your surgery, we’ve been here for you and your family before this pandemic, we’re beside you through it and we’ll be beside you after it’s all over we hope.

If you’re well, we want you to have the best care. If you’re ill, we want you to have the best care.

But… what we might think you want… and what you actually want may be quite different things.

Talk to your family about what you’re thinking, talk us to us about what you’re thinking. That way, we all know what “the plan” is.