Death, dying and bereavement affect us all. And yet many of us find it incredibly hard to talk about.
For carers, talking about death with a loved one may be particularly important. But it can feel even harder to start.
You might worry about saying the wrong thing, upsetting them, or opening a conversation you don’t know how to finish. So it’s often easier to avoid it altogether.
This guide is for carers who want to feel more confident starting conversations about death, dying and end-of-life care.
What gets in the way of talking about dying?
With advances in modern medicine, Western culture in particular now keeps death at a nice, safe distance.
Everyone hopes to live well, to truly ‘live our best lives’. However, for carers and those they look after, this can be challenging.
We often use words like ‘battle’ for illnesses such as cancer and long-term conditions, as they're something you can beat if you’ve got enough fight in you.
But fights and battles have winners and losers. And this can sometimes leave people feeling as though they didn’t do enough to overcome the illness. Or that death is a failure, whether of their bodies, the healthcare system and technology.
It's equally important to consider what it means to ‘die well’. That is to have lived a meaningful and satisfying life, and to be able to face the future calmly, with tranquillity and with dignity, right up to the end.
In England and Wales, almost 600,000 people die every year. Many of these deaths involve complex symptoms and require specialised healthcare.
Sadly, over a quarter of us (27%) struggle to discuss death with family and friends, and nearly a third of us keep our feelings to ourselves.
This is one of the reasons why support for carers is so crucial.
Hospice UK runs an annual campaign called Dying Matters Awareness Week. Their goal is to help us overcome the stigma and taboo surrounding death and dying, and to emphasise the importance of having open conversations about it to enhance the end-of-life experience.
Why is it important to talk about death and dying?
Many people would prefer to spend their final days at home, but in reality, this doesn’t always happen. (Over 60 per cent of people wish to pass away at home. Yet in 2023, 23 per
cent of deaths occurred in hospital.)
Hospital care does offer excellent nursing, and some of us might need that during our final days. However, hospital stays can also result in additional treatments that we might not want.
Most adults have the capacity to make decisions about their treatment, but this can change over time with illness.
What conversations should carers have about end-of-life care?
For some carers, you may be looking after someone who doesn't have the capacity to have an end-of-life conversation.
If your loved one is diagnosed with dementia or a life-limiting condition, it is a good idea to chat about the kind of care and treatment they would prefer. This is known as advance care planning.
The plan can include decisions about any life-prolonging treatments and end-of-life care.
But it can also cover everyday decisions that might have nothing to do with medical treatment, such as where they would want to be looked after.
Advance care plans are all about making sure you honour the life, values and connections that are most important to the person you care for.
What should carers talk about when discussing end-of-life care?
When having an end-of-life conversation or supporting your loved one with their advance care planning, try to ask questions that are easy to understand and that they can connect with.
Here are some ideas.
• What kind of care would they prefer?
• How long would they want doctors to treat them?
- Where they’d like to die.
- What kind of funeral do they want? And do they want one at all?
- What music would they like to be played at their funeral?
- Are there any photos they would like shown?
- How would they like to be remembered?
- Who will care for any dependents?
- What are the details of their will?
- Do they want to donate their organs?
- Anything they want people to know before they die.
Talking about dying - what to say and where to start?
Talking about death with a loved one can feel a bit daunting at first. But it is not as difficult as it seems.
For example, it is often nice to chat about friends and family who have passed away, and that can be a great way to begin a conversation.
It can be hard to know where to start. Here are some ideas to help you ease into the conversation
- Try a practice run
If you’re worried about saying the wrong thing, why not practice what you want to say with a friend or colleague first? - Pick the right moment
Find a time when you’re not rushed and a place where you feel relaxed. It’s tough to have a serious chat when you’re in a hurry or feeling stressed. It can also be helpful to look for signs that the person you care about is open to talking about the future. For example, you might be discussing retirement plans or remembering someone who has passed away. - Start with a question
Questions can be a more natural way to begin a conversation than starting with a statement. You could ask your loved one what they’ve loved most about their life, what they still want to do and what they want to happen in the future.
Or you could ask:- ‘Have you ever wondered what would happen if...?’
- ‘Do you think we should talk about...?’
- ‘What’s important to you?’
- Be reassuring
Phrases like ‘I know that talking about these things is never easy’ and ‘We’ve never talked about this before but...’ can be helpful too. - Be honest about how you feel
It helps to be open. Whether the conversation ends in laughter or tears, there’s no reason to be afraid of either. - Take it one step at a time
You don’t need to cover everything in one conversation. It might be easier to talk things through bit by bit. - Make sure you listen
Listen to what they are saying - not so you can respond. And don’t feel the need to fill the silence. The space will give them a chance to say what’s important to them.
Often, it’s the things we don’t say, rather than the things we do, that stay with us.
Tips for being a good listener
- Listen carefully
Make sure you give the conversation your full attention. - Don’t worry about saying the wrong thing
Don’t stress about getting it perfect. No one is expecting you to have all the answers or to be an expert. - Be patient
When discussing sensitive or tough subjects, people might need a moment to find the right words. Let them know it’s okay to take their time.
Try not to judge. Everyone is different, and so are their wishes about what happens when they die. What works for you might not work for them. Let them share their thoughts and wishes freely. - Take care of yourself
It can be upsetting to talk about death, especially with someone close to you. Make sure you make time for yourself afterwards.
Final thoughts
Remember, there’s no ‘one-size-fits-all’, perfect way to talk about dying. But by putting plans in place, you can help a loved one living with dementia or a life-limiting condition to live more comfortably in their final days.
You don’t have to have the whole conversation today. But perhaps it’s a gentle nudge to start somewhere. With one question, one moment, or one honest conversation.
And if reading this has made you think about your own wishes, maybe you can also open that conversation too.
If you’d like support with these conversations, or space to explore your thoughts and feelings about grief and end-of-life care, you’re welcome to get in touch.