Good Q, @rbcmmn.
One CCG has sent patients this 'essay' to let them think, reflect & talk to family about, along with a letter to say 'We'll be contacting you to talk about what might happen & what choices you want to make.'
https://m.facebook.com/story.php?story_fbid=2949195348436749&id=1791390227550606
1/ https://twitter.com/rbcmmn/status/1246503823994167296

The ACP conversation is misplaced if it talks only about 'wants' or 'wishes.' We might want to live forever; we might wish to be cared for at home.
If I live in an isolated farmhouse & need regular care, but much of the workforce is off sick, I have choices:
2/

I can choose to forego care, knowing that will be a struggle. Or I can choose to move to a place where care is available, and lose the comfort of my familiar home.
What I can't do is demand a service that isn't available. So 'choice' isn't infinite.
3/

In #ACP, choice is about which of the treatments that are suitable & appropriate for my condition would I NOT wish to have.
The ventilator discussion attached to tweet 1 is an example of this. There are 3 possible clinical scenarios:
(for simplicity here, assume all covid)

4/

Scenario 1. I am so sick with #COVID19 that my lungs are failing. My other organs are failing. I will not survive even with the support of a ventilator.

A ventilator is thus not an appropriate trt. I can't 'choose' it.

5/

Scenario 2. I am so sick with #COVID19 that my lungs are failing. I am otherwise still in reasonable health. A ventilator is likely to prevent my death while my lungs recover.

A ventilator is appropriate treatment. I can decline for any reason. Some people do.

6/

Scenario 3. I am so sick with #COVID19 that my lungs are failing. Other organs are struggling. A ventilator may prevent my death, but 2-3 more weeks of critical illness in ICU may leave me permanently debilitated if I survive.

A ventilator is a possible option...

7/

Scenario 3 illustrates the importance of taking people step-wise through the ACP process.

The question is 'would surviving with profound debilitation be preferable to death? Would you prefer to take that risk, or not?'

Many would not, but hadn't previously considered it.

8/

Likewise the resuscitation status conversation. The question is NOT 'Do you want to be resuscitated?' as though resus is as simple as pressing a button, with success guaranteed.

There are scenarios to contemplate again, each one building the person's understanding.

9/

Scenario 1. Out of the blue, in full health, you suddenly have an electrical problem in your heart. It stops. You lose consciousness.
CPR is First Aid that keeps the rest of your organs alive until your heart can be re-started, which it *sometimes* can.
Would you accept CPR?

10/

Scenario 2. During an acute illness from which you are expected to recover, your heart stops. You lose consciousness.
Because you're already unwell, the chances of re-starting your heart are *less good*
Would you accept CPR?

11/

Scenario 3. You are very sick. Your organs are failing. You lose consciousness; your breathing gets weaker. You are dying. Eventually even your heart stops.

CPR will not change anything. It will not rescue you from anticipated dying.

CPR is not a treatment for you now.

12/

It's scenario 3 that gets us all tied up in knots if we suggest it's a 'choice.' At death there are no choices: not CPR or brain surgery or a heart transplant.

CPR works, but only sometimes, when the heart stops first.
In dying, the heart stops last. No options left.

13/

I watched a skilled GP have this conversation with my elderly, frail relative. At the end, she asked if she could make a suggestion to her.
'Can I give you a certificate, to tell everybody that, if your heart stops, they should hold your hand and not jump on your chest?'

14/

My relative was delighted with her 'Protection from CPR certificate.' I've used that phrase ever since.

So in summary, ACP isn't about making choices. It's about determining what options we would accept, should they be clinically indicated.

15/

If a treatment is futile, it won't be offered (same as antibiotics for viral sore throat).
CPR is the only 'treatment' that passers-by or unknown hcps may administer if they don't know we don't want it or can't benefit from it.

16/

So rather than the language of choice, I believe we should move to the language of 'treatments I would or would not accept.'

It gives us back autonomy.
It makes no unrealistic promises.
And it recognises that there are still no treatments for death.

17/17