Jill Stansfield 1 August 2024

Why is it important to start advance care planning conversations early and before crisis?

A guest post from Jill which asks healthcare professionals to have advance care planning conversations much earlier, before a crisis hits.

Guest post Advance care planning

My name is Jill, and last year my dad, Brendan, died. I want to explain how an advance care planning conversation could have saved years of pain for both Brendan and my family.

Brendan was fiercely independent and strong, he never feared death, for him it was a normal part of life. But he was very worried that in the future he might lose his independence and not be himself anymore.

Dad’s worst fear came true after suffering a stroke in 2016 and we were told there was no real prospect of recovery.

Dad’s wishes were clear – he wanted to die naturally – so he began to refuse food and drink. However, repeatedly and continually, he was given medical treatments to prolong his life that I knew were the opposite of what he wanted.

At first there were five of six attempts to fit a naso-gastric (NG) tube, but dad kept removing these himself. Then he was fitted with a percutaneous endoscopic gastrostomy (PEG) which dad immediately wanted withdrawn. Dad clearly expressed his wishes and whilst at first his medical team were certain he had capacity to refuse this treatment, once the hospital’s legal team got involved this changed and so against his wishes the PEG was continued.

Dad quickly deteriorated after that and for the next seven years he was a body that laid in bed and stared at me. To see him like this felt just wrong, so I fought hard for his wishes to be heard.

We had multiple meetings with healthcare professionals that began in July 2016, where I told them this is not the situation my dad would have wanted. With each new meeting or treatment decision that arose I had to once again explain and justify what I knew his wishes were, but no one listened to me.

Years before his stroke he went to a solicitor to get an advance decision and a lasting power of attorney, but the solicitor didn’t know what to do, so dad never went back and the documents weren’t completed. He always thought as long as he told them what he wanted that would be enough. But with no record of my dad’s wishes, it felt impossible to get his healthcare team to listen. They needed to listen to the people that knew him all his life, we knew dad’s wishes better than anyone but we were dismissed. They don’t know his favourite colour, his history, why he doesn’t like mashed potatoes, but I do. How can they possibly know what he wanted medically?

It was like the 73 years he lived before the stroke suddenly didn’t matter anymore.

It is so hard to question medical decision-making and I want to do all I can to make sure other families don’t go through what we did. If my dad’s GP had sat down with him years before his stroke and helped him to understand the different types of advance care planning documents, he would have made them all and made me do it with him. He would have recorded his decision to refuse treatment in exactly the sort of scenario he was in. We wouldn’t have had to struggle for so many years because his wishes would have been laid out in his words.

I think too many people are not able to say what they want in these situations because they don’t know they can. I ask that healthcare professionals have these important conversations before a crisis and provide the information needed for people to make an informed choice about whether or not to take part in advance care planning. I believe in the power of information, and we’ve got a chance now to make this happen.