Upeka De Silva 15 October 2018

Check your privilege – exploring how GPs support patients with Advance Decisions

I’ve recently completed a Freedom of Information (FOI) request relating to the advance care planning policies of all 207 Clinical Commissioning Groups

Freedom of Information (FOI) Living will (advance decision) Research and policy Working in the open

I’ve recently completed a Freedom of Information (FOI) request relating to the advance care planning policies of all 207 Clinical Commissioning Groups. This included looking at how callers to our Information Line feel about interactions they’ve had with their GPs about Advance Decisions (also known as Living Wills).

I’m asking GPs to check their privilege

I don’t mean this as an insult. Instead, this is a plea to GPs to reflect on the privileged position they’re in to help people get the end-of-life treatment and care that is right for them.

I’d like GPs to reflect on this important role, and on whether they’re doing all they can to understand and support their patients to plan their future care.

The law is here to help

The Mental Capacity Act 2005 is an empowering piece of legislation. It helps people make decisions about their future treatment and care in advance. This means that, in the event they become unable to make these decisions for themselves, the treatment they receive would be in line with their values and priorities. It helps make person-centred care possible in a simple and meaningful way.

You can get your own Advance Decision for free on our website.

The reality doesn’t always live up to the legislation

As part of my work I’ve been examining the experiences of callers to our Information Line. This free service offers people an opportunity to discuss and write down their treatment preferences. It’s a way for people to get information and share experiences.

Here are some examples of what callers have said in relation to disappointing experiences with their GPs:

• ✗ “The GP thought that my Advance Decision meant I did not want any further treatment as of now! I explained that it was a refusal of treatment for when I lost capacity to make decisions myself. The administrative department refused to record my Advance Decision on my medical notes and destroyed the copy I had given them.”
• ✗ “My GP said ‘don’t bother doing an Advance Decision, it’s not legally binding.’ ”
• ✗ “My GP told me I wasn’t old enough to do an Advance Decision”
• ✗ “When I went to discuss my Advance Decision with my GP, she was utterly bemused by the whole thing. ‘What is this? Why are you bringing it to me? Where did you get it from?’ After she’d read the whole thing, she said ‘so it’s about not being resuscitated?’ I had to explain everything to her.”
• ✗ “My GP told me I needed a solicitor to complete an Advance Decision.”
• ✗ “My GP told me that I can only have an Advance Decision if I had a pre-existing condition like cancer.”
• ✗ “My GP isn’t supportive of my Advance Decision and said I have to pay £50 for an appointment to discuss it.”

We have to work together to make things better

I know that GPs are overstretched. I want to help. But first I need to understand why some opportunities to support people in taking control of their future care are being denied.

• Do national commitments to person-centred end of life care not resonate with GPs?
• Have those who developed the law neglected to support GPs to implement it?
• Do GPs simply not have the time to take up training on these issues and to have conversations with patients?
• Is traditional paternalism getting in the way of patient choice?

Whatever the reasons, I have no doubt that change is possible. I believe that GPs — the privileged gatekeepers to person-centred end-of-life care — can work with us to play a meaningful role in creating that change.

I hope this will lead to more calls like this:

I’ve completed my Advance Decision, discussed it with my GP, who put it on my records. I can now relax!

To find out more about how to make change happen you can read our full report.

If you’re a GP that wants to work with us to improve the experiences of your patients, drop me an email.

If you want to share your own experiences of talking to your GP about Advance Decisions, good or bad, you can call our information line on 0800 999 2434, email me, or send us a Tweet — we’d love to hear from you.