We know that talking about death is difficult and the BBC film ‘Should everyone have an ‘end-of-life’ plan?’ begins with an acknowledgement of this. “I don’t want to talk about my death too much with them because I don’t want to make them feel more unhappy” says retired teacher, Mary Hewson, speaking about her family.
But it isn’t just the worry of making loved ones sad; knowing how to start the conversation can be difficult, even when illness means you need to. Health psychologist Mirrielle Hayden from support organisation Gentle Dusk explains: “You don’t have the language because you’ve never talked about it. You don’t have the familiarity, you don’t know how to open the question.”
But as hard as it can be, there are clear benefits in speaking openly about what you want for yourself at the end of your life.
We plan throughout our lives – from the birth of our children to changing jobs, moving house and saving for retirement. Dr Erica Borgstrom, medical anthropologist at The Open University says starting to plan for our end-of-life care is increasingly important. “More of us have a period where we are dying rather than just suddenly dead. So there’s a chance to think about what that period will look like” she says.
Thinking specifically about medical care, there is sometimes a belief that our families will be able to speak on our behalf, but palliative medicine consultant Dr Sarah Yardley says that’s not guaranteed. “Families might make the assumption that they will be able to speak on behalf of their loved one, and it’s not an automatic thing that they can do that. It’s important that they legally nominate a family member by making them a lasting power of attorney for health and welfare” she says.
Disabilities campaigner Adil Ghani says it is a comfort to him knowing that his parents have power of attorney, a legal document that appoints them to make decisions on his behalf. “They can make those decisions when I’m not able to rather than a doctor or somebody who doesn’t know me very well.”
Thinking ahead can also mean considering whether we want to die at home, in hospital or in a hospice; what type of funeral we want and where we want to be buried or have our ashes scattered; even who we want to look after our pets.
“I think a funeral plan is extremely helpful” says retired teacher Mary, whose husband Carl put a funeral plan in place before he died. “We did know what he wanted in his funeral and what he didn’t want. That kind of practical thing was such a comfort to the family.”
Mary says in the video she has begun an advanced care plan, and although she’s not ready to get into the minutiae she sees the benefit of, ‘getting things together’ so that it’s easy for her family. Mirrielle at Gentle Dusk says documenting your end-of-life wishes puts you at the centre and lets health care professionals and family do the best they can to make sure you have the care you want.
Disabilities blogger Kerry Thomson says planning ahead allows your loved ones to grieve for you instead of having to worry about the ‘what ifs’.
We live in a world where personal choice is almost taken for granted. From healthcare to funerals, there is an expectation from both professionals and individuals that people will want to have their say.
The downside of that can be pressure to make sense of complicated medical information at a time when we might rather leave the decisions to someone else, or leaving loved ones to make decisions without us. Documenting your wishes in advance gives everyone, from doctors to friends and family the information they need to decide what is best for you.
Campaigner Adil says, “Nobody’s going to say, ‘Well Adil didn’t say what he wanted’. Because I did and it’s there on paper.” Mirrielle says, “It’s a true gift of love because you’re taking away that burden.”
In ‘Should everyone have an ‘end-of-life’ plan?’, no one pretends that talking about death and dying is easy. But they make the point that once it’s done, you can revisit your plan as you need to, but otherwise you can just get on with your life.
“Put your wishes down,” says palliative medicine consultant Dr Ollie Minton. “File away, and forget about it. Focus on the important bits of living and getting on with life.”