Published: 12:36, 13 May 2021
| Updated: 13:52, 13 May 2021
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.
This week is Dying Matters Awareness Week, with the aim of prompting people into having those difficult conversations about what we want in the last chapter of our lives.
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 our final moments?
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”.
It can also help the people you leave behind to grieve and move on, says Angela Cooke, who is practical development lead at ellenor hospice, which serves families in Gravsham, Dartford, Swanley and Bexley.
Some think of an ACP as their last gift to help loved ones live a life without them.
Angela said: “Watching the people that are left behind is what we see at ellenor.
"I have met families who managed to achieve what mum wanted at the end of her life. 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.”
An ACP is a written document which expresses your wishes for what happens when you no longer have the capacity to make these decisions.
Angela said: “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.
“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.”
Not making an ACP means 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.”
And 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,” added 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.
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,” said 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.”
You can make an ACP at any age. All you need is to write down your wishes, tell your family that you have made an ACP and let them know where this is kept. It can be handed to paramedics, and they will know how you want to be treated.
Things you might wish to consider include: where you wish to die - at home, in a hospital or hospice; a last place you would like to visit; if you want to be resuscitated; and who you want to be there with you in your final days.
Religious, spiritual and cultural elements may be important to you along with music and your funeral arrangements.
The hospice offers a useful guide to things you can consider and you can download a template ACP too.
Angela recalls one patient, Jane, who was admitted to the hospice for symptom control. Unfortunately, her condition deteriorated and doctors explained her prognosis was short.
That morning, Jane expressed a wish to die at home and by the afternoon she kept drifting in an out of consciousness. Plans for her discharge were hastened as she was still fit for transfer.
ellenor had to liaise with other service providers to enable her to be discharged home as soon as possible. Usually discharges can take between a week to two weeks to organise but in Jane’s case, her discharge was possible after only four hours.
She died peacefully the next day, at home with her husband.
Jane did not have an ACP as she thought she had ample time to complete one. Thankfully, her wishes were honoured but cases like hers are rare as it is often too late to transfer a patient home to die as they are too poorly to tolerate the journey and it takes time to sort equipment, medications and arranging care to be available as well as preparing the family.
Find out more at ellenor.org