No-one likes to think about what could happen as we approach the end of our life. But the COVID-19 pandemic has shown that a sudden change in circumstance can come to us all – and your loved ones may be left wondering if they did the right thing for you at the end. Angela Cooke, ellenor’s Practical Development Lead, explains how we can help you make an Advance Care Plan that outlines what you want in this last chapter of your life

We are all encouraged to make a will so we can say what happens to our estate when we die. But how many of us have thought about how we want to spend the final moments of our lives? That’s where an Advance Care Plan (ACP) comes in. It’s a will of wishes that says: “When I die, this is how I would like it to be”.

"Having an ACP in place, helps you keep control of your life to the very end – and enables the people you leave behind to move on," says Angela. "Think of it as your last gift to help them live a life without you."

“Watching the people that are left behind is what we see at ellenor. The footprints that are left behind for those that have to carry on,” says Angela.

Being able to do this without the burden of worrying if they did the right thing for you can make a real difference in your loved ones’ ability to grieve. “I have met families that managed to achieve what mum wanted at the end of her life,” says Angela. “They have accepted and spoken freely about death. The ones that don’t talk about it are often the ones that have the bereavement issues. Did they do the right thing? They have the guilt of those that are left behind.”

What is an Advance Care Plan?

Put simply, an ACP is a written document that expresses your wishes for what happens when you no longer have the capacity to make these decisions. As Angela explains: “It’s about how you want to write the last chapter of your life. An ACP gives you a voice when you are still here but silent. When you can no longer speak, you are speaking through this document.”

Many people are unaware that they have a say on how they would like to be cared for at the end of their life, but Angela is adamant that people should still have a choice, even when they have no voice. “We have always had our human right to decide how we want to live so we should have our human rights right to the end for how we want to die.”

Why make an Advance Care Plan?

Not making an ACP means that you have no control over what you want, others will make that decision for you. Angela warns that the way people die in films, with all their faculties and the ability to express their wishes, does not reflect reality. “In some cases, people don’t have the time to think about it as their condition deteriorates very quickly.”

What happens at the end for you, is up to the people caring for you to make those decisions. No matter how well we know our loved ones, we may be surprised by their innermost wishes. “Just because you are close to someone it doesn’t mean what they want is what you want,” adds Angela.

Making an ACP when you are healthy and well means you have time to really think about what you want, what’s important to you and who you want to be with you at the end.

What difference does an ACP make?

Having an ACP written down in a place where loved ones know where to access it allows you to make clear what you want and leaves you free at the end of your life to make the most of every moment. “If it was a young lad who travels round the world, if he wanted to go to on holiday then we can try to make that happen,” says Angela, but only if there is enough time to plan ahead.

Angela’s advice is to start to have the ACP conversation at any age when you are fit and well. “It’s the chance to start the conversations that are important to have.

Otherwise it’s never spoken about and when you do want to talk about it, it’s too late.”

She knows it’s a hard thing to do, but the COVID-19 pandemic has shown how precious life is and how quickly it can go.

How do you make an ACP?

You can make an ACP at any age. All you need is to write down your wishes – ellenor offers a useful guide to things you can consider – and tell your family that you have made an ACP and let them know where this is kept. This makes it easy for them if you are suddenly admitted to hospital or a hospice. You can hand this to the paramedics, and they will know how you want to be treated.

Things you might wish to consider include:

• Where do you wish to die, e.g. at home, in a hospital or hospice?

• Is there one last place you would like to visit

• Do you want to be resuscitated, intubated, have intensive treatment?

• Who do you want to be there with you in your final days?

• Are there any religious, spiritual or cultural elements that are important to you?

• Is there specific music you would like to hear?

• Do you want to be buried (and where) or cremated.

An ACP is about what you want and what is important to you. And no request is too strange, says Angela, if it matters to you.

For further information on Dying Matters please keep an eye on https://www.mynewsdesk.com/uk/ellenor