The end of life conversations many of us wish we'd had sooner

As our parents and other older relatives get older, many of us will find ourselves having conversations we’d rather put off. What kind of care would they want if they became unwell? Where would they want to be cared for? And what are their wishes for the end of their life and their funeral?

They’re not easy things to talk about, particularly when someone is fit and well. But talking sooner can make things easier later on - and help make sure the person you care about has a say in what happens.

Of course, starting that conversation isn’t always straightforward. Some older relatives may be fiercely independent and resist any suggestion that they might need care, while others simply don’t want to look too far ahead. And many people worry about stepping in too soon or making a parent feel as though their independence is being taken away.

But planning ahead isn’t about expecting the worst, and it isn’t only relevant to people already living with a terminal illness. It’s about understanding what matters to someone while you have the opportunity to ask, so that if decisions do need to be made later, you’re not left trying to guess what they would have wanted. 

Marie Curie offers free practical information and support to help people start these conversations and plan ahead, whether you’re thinking about your own wishes or helping someone close to you think about theirs 

Why it’s better to talk sooner

We may all feel we have more time, but circumstances can change quickly. Knowing what someone wants can make a real difference if difficult decisions suddenly need to be made.

Having these conversations while someone is well enough to make their own decisions can also give the people close to them reassurance that they are respecting what their loved one would have wanted, not simply relying on guesswork.

Marie Curie recommends starting these conversations sooner rather than later, when there’s time to think things through without the pressure of an immediate decision. Its guide to starting conversations about the end of life can help if you’re not sure how to bring the subject up. 

“It's a difficult conversation to have. However I'm an only child and I would rather know my parents final wishes than guess. My dad is nearly 80 and we sat down with a cuppa and talked about it. Yes it breaks my heart but I want to do the right thing for him,” Mumsnet user shellyleppard said.

Talking sooner rather than later also means there is less pressure to cover everything at once. Starting the conversation early gives families time to return to it, ask questions, and change or adjust plans if circumstances or preferences change.

“A close friend lost a parent a couple of months ago. They weren't poorly (well it was thought to be minor, like a cold sort of thing) so these conversations didn't take place. They more or less dropped dead. They were only a couple of years older than your mum. No one is too young to die,” mummyh2016 said.

What to talk about

Care planning

Care planning means talking with a loved one about the care they would want in the future, including what matters most to them and what they would want if they became too unwell to communicate their wishes.

This might include where they would like to be cared for, where they would prefer to die, who they would want involved in decisions about their care, what they would want to happen in an emergency, and any spiritual, religious or personal wishes that are important to them.

It can also help to talk about the smaller things that make them feel comfortable day to day. That could include who they would like around them, whether they have concerns about being in hospital, what helps them feel at ease, or any routines and personal preferences they would want carers to know about.

Marie Curie has more information about advance care planning, including the kinds of things you might want to think about and discuss. 

Getting important information in one place

Grieving for a loved one is hard enough without also having to deal with the practical admin that comes with it, from finding bank details and closing accounts to cancelling insurance and tracking down passwords.

Keeping important information in one place can make things much easier when the time comes, so that those left behind aren’t trying to piece everything together.

That doesn’t necessarily mean handing over access to everything while they’re alive. It could simply mean agreeing to keep important documents and details in one place and making sure the person who may eventually need them knows where to find them.

“Both my parents have a list of passwords that they print out a copy of whenever they update a new password and give to me - interestingly neither give each other a copy despite the fact they have mirror wills that leave everything to one another!” Arlanymor said.

“My friend's dad made a folder of everything - bank accounts, pensions, investments, passwords, will, funeral plan etc - just in case. He was going into hospital for a minor op and when she went to collect him he brought it out with a flourish and put it on the kitchen table ‘just in case.’ But the operation went wrong and they used everything in it,” CluckCluckBlow said.

Marie Curie Nurses and other clinical staff provide expert hospice care at home and in our hospices, helping people get the care and support they need in the place that feels right for them

Getting on top of Wills

It’s also worth making sure a loved one’s Will is up to date. A Will sets out what they’d like to happen to their money, property and belongings after they die, and who they want to leave them to. If they already have one, check that it still reflects their wishes. 

Funeral arrangements

Funerals can be another difficult thing to talk about, but knowing what someone wants can make decisions easier when the time comes – and give them a say in how they’re remembered.

They may have strong views about where their funeral should be held, whether they’d prefer a burial or cremation, or what they’d like to happen to their ashes – perhaps scattered somewhere special or placed near a loved one.

They might want an upbeat celebration of their life with everyone wearing bright colours, or have particular songs, readings or traditions that mean something to them. You don’t have to plan every detail, but it can be helpful to know if there are any real non-negotiables.

And sometimes these conversations can be surprisingly ordinary. A favourite song, a particular flower or a place that holds special memories can all tell you something about how someone would like to be remembered.

“My parents expressed wishes about burial or cremation, and I knew who their funeral director of choice would be, as they knew them for over 30 years. It was a blessing that I found a list of the hymns and readings that my mother wished for, especially as she was musical,” LlynTegid shared on our Talk board.

How to start the conversation

Talking about dying and end of life wishes is never easy, so if you’re the one approaching the subject with an older relative, try to let them set the pace.

They can decide how much they want to talk about, what they want to discuss and when they’ve had enough for the moment. It doesn’t have to be one big, difficult conversation – sometimes smaller conversations over time can feel more manageable.

Try to make it clear that you’re asking because you want to understand what matters to them, not because you’re assuming the worst or trying to take away their independence.

And the conversation may not always go as planned. Someone might become upset, change the subject or say they don’t want to think about it. That’s OK. You can leave it there and come back to it another day. The important thing is to keep the door open.

“Just talk and take time to listen to each other and don’t avoid it. It will hurt and upset you all, but this is painful either way and at least you have the comfort of knowing what he wants of you have these discussions,” fourelementary said.

Marie Curie also offers practical ways to help start the conversation, including Talkabout Conversation Cards, designed to help people open up about their wishes around end of life care and funeral arrangements. 

Conversations about the future don't have to happen all at once - starting early can help people feel more prepared, giving them time to talk, listen and revisit plans when they're ready

Recording and sharing someone’s wishes

Advance care planning is about talking about, recording and sharing how someone would like to be cared for in the future.

This might include treatments they would or wouldn’t want, where they would prefer to be cared for or die, and the things that matter most to them.

But it’s not simply a case of writing something down and putting it in a drawer. Sharing relevant wishes with the people involved in someone’s care can help make sure they’re understood when they’re needed.

If someone later becomes too unwell to communicate or loses the mental capacity to make certain decisions, having talked about and recorded their wishes earlier can help the people around them understand what matters to them.

Marie Curie has information on planning ahead, including more guidance on advance care planning.

An advance care plan isn’t legally binding. A living Will, also known as an Advance Decision to Refuse Treatment, is different: it allows someone to set out specific medical treatments they would not want to receive in certain circumstances.

If they want someone they trust to make certain decisions on their behalf in the future, they may also want to consider setting up a Lasting Power of Attorney. This can cover property and financial affairs or health and welfare, depending on the type.

Where to find support

Planning ahead, caring for someone and facing the end of life can be difficult for the people close to them too. There can be a lot to think about, decisions to make and emotions to deal with, so you don’t have to manage everything on your own.

Caring for an elderly parent can also be exhausting, particularly when you’re trying to balance caring responsibilities with work, children and your own life. If you’re feeling overwhelmed, it can help to acknowledge just how much you’re carrying and look for support for yourself too.

Talking to friends, relatives or other people who have been through something similar can help. Sometimes simply speaking to someone who understands what it’s like can make things feel a little less overwhelming. The Mumsnet forums can also be a useful place to find practical suggestions and a sympathetic ear.

Marie Curie offers free practical information and emotional support for people living with a terminal illness, as well as those close to them and their carers. Marie Curie Nurses and other clinical staff also provide expert hospice care in the comfort of home or hospice.

The Marie Curie Support Line can be a useful place to turn if you’re unsure what support is available, have questions about dying, death and bereavement, or simply need a listening ear. And you don’t have to wait until you’re facing a crisis to get in touch.

Mumsnet users have also shared how Marie Curie’s care and support helped their families.

“Marie Curie sent a nurse to my parents two nights a week, it was a godsend to my mum,” Anycrispsleft said.

“Marie Curie allowed us as a family to concentrate on him and as a family they surrounded us with love and supported us so that when he did pass it was a good death,” TicklishPlumFish added.

Marie Curie provides expert end of life care, practical information and support for people living with a terminal illness and the people close to them

How supporters can help Marie Curie

Having access to the right care, information and support can make an enormous difference to people living with a terminal illness and those close to them. Marie Curie relies on its supporters to help make that possible – and to help bring about wider change in end of life care.

There are plenty of ways to get involved. You can donate or fundraise, volunteer your time, campaign with Marie Curie for better end of life care, or share your own experiences to help make sure the voices of people affected by dying, death and bereavement are heard.

About Marie Curie

Marie Curie is the UK’s leading end of life charity. It provides expert hospice care in the comfort of home or hospice, as well as information and support for people living with a terminal illness and those close to them. Marie Curie also campaigns for better end of life care and funds research to help improve experiences of dying, death and bereavement.