What Now? Questions to ask after a terminal diagnosis
“It felt empowering, like I had taken control. It allowed me to get on with enjoying living now.”
Starting the conversation
Introduction
Whoever you are, whatever stage of your life you’ve reached, it can help to talk about your wishes for end-of-life care and treatment with your loved ones, doctors and nurses. Particularly if you can’t speak for yourself when the time comes, due to illness or injury. Because talking about it now helps you to make informed decisions that feel right for you.
We asked more than 300 people who called our information line about their experiences of talking about their end-of-life wishes. The quotes we’ve used are what they told us.
There’s no right or wrong way to start talking about it. Everyone’s different and we know some people find it more difficult than others. You might be worried about upsetting the people you care about. But talking openly and honestly about it can help with that. And once you’ve decided, you might find it useful to write your choices down. This makes it clear what your wishes are, so carers or medical professionals can understand and respect them. There are different ways you can do this, which are explained in this guide.
Why is it important to have the conversation?
Talking about your wishes for care and treatment is important for both you and the people around you.
Telling our loved ones our wishes helps them have the confidence and comfort to know they’re doing what we want them to do.
For you, talking about your wishes can:
- Help you to make informed decisions in your own time by considering your options.
- Give you control over the care and treatment you receive, whether that is tomorrow or further in the future.
- Give you peace of mind that you have taken steps to make sure your wishes are known about, recorded and respected.
For those close to you, talking about your wishes can:
- Help them to feel involved in your decisions and to understand your wishes.
- Make sure they are not left guessing what you want if doctors ask them to help make a decision about your care or treatment.
“I felt it was better not to talk about things in case it made them happen. But when I did, I felt relieved. It wasn’t without challenges, but it’s my life and I want my family to know what’s important to me.”
Before I start: Thinking about my wishes and getting ready to talk
Some people find it easier than others to talk about the future and what might happen if they are unable to make decisions for themselves. If you have concerns about starting such a conversation, you are not alone:
“I’m worried my friends will think I am morbid.”
“My wife doesn’t want to talk about a time when I’m unwell. Thinking of losing me upsets her.”
What do I want?
Before you start the conversation, it may be helpful to think about what you want and what you are going to say.
You could start by thinking about what would be important for someone to know if they were caring for you, such as:
- Day-to-day things like the food you would like to eat or the clothes you would like to wear.
- Any values or beliefs that affect the way you want to be cared for.
- What is important to you in the last days and hours of life, for example where you want to be cared for or who you would like to be with you.
- Your wishes for medical treatment, for example there may be some treatments that you do not want to be given.
You may also find it helpful to write down what you want to say.
“Think about what you want and get it clear in your mind – so you can present your thoughts clearly.”
“First, write down what you have thought about, so you have it all straight before you speak to anyone else.”
Having the conversation with people I’m close to
This section offers ideas from real people that might help you to start your conversation. Some of the suggestions and opinions say opposite things but we have included them because there is no right or wrong way to do it – it is important that you do what feels right for you.
“Do it before it is too late. We never know what’s around the corner. Not doing it could mean your wishes aren’t respected – that’s far worse than discussing a sensitive subject in your own time.”
“Don’t rush, it’s a process.”
Start early
Losing the ability to make decisions for yourself can happen unexpectedly, and thinking about your wishes can take time, so it is best to begin as early as you can.
“Start as soon as possible. Ideally, long before you have a life threatening illness. That way the subject has been broached when the end of life seems a long way off, so the whole topic is hypothetical and feels much easier to cope with.”
Give people warning that you want to talk
Gently letting someone know what you want to talk about a few days or weeks before you start can help them prepare for the conversation.
“Finding the right moment is crucial. A short ‘warning’ that you would like to talk about end-of-life wishes some days before the discussion might help so it doesn’t come as a shock.”
Little and often
Having a long conversation about a sensitive or emotional issue can be tiring. It may be helpful to talk about your wishes in a series of shorter conversations.
Take time and be patient. If they are finding it hard, just leave it and come back to it another day.
“Drop a few little hints or ideas into normal conversation beforehand so they get used to you talking about the subject before you have a full conversation.”
Find a good time and place
Finding the right moment, when you are relaxed and have plenty of time, can help you start the conversation.
“Choose a time when people are together or if you feel it is going to be a difficult conversation, choose your moment with each individual.”
“I spoke to my husband when we were walking the dog. It helped because he could think about what I was saying without feeling pressure to fill any silence.”
“Car journeys are a good time as you’re together but not face-to-face.”
Make talking about your wishes part of your everyday planning
When we talk about ‘putting our affairs in order’, we often focus on what will happen to our money and property. Thinking about planning ahead for our wellbeing in this way can make it seem more ‘everyday’ and easier to talk about.
“The more naturally you speak of it, the easier it gets and, even if they don’t like to hear it, the family will at least know what you want to happen.”
“Make it as matter of fact as possible – “I’ve decided…” – rather than opening a discussion. Some people get embarrassed if they think you rely on their opinion.”
Relate the conversation to something familiar
Relating a topic to something in our everyday lives can make it is easier to talk about and can help others to understand the importance of it.
“I said…
“Since losing my friend, I’d like someone close to me to know what my hopes and wishes are. Have you ever thought about this before?…”
Then it naturally seemed to continue.”
“Begin by referencing a shared experience of a close friend or relative for example…
“If I were in their situation, I wouldn’t want that. I want to make sure that if I’m seriously ill…“
“Watching a TV programme, reading an article, hearing something on the news… anything to open the discussion.”
Be clear about what you want and don’t give up
Although conversations can be difficult to get started, they can also get easier as you go along. It may take a little or a lot of bravery to begin, but it is an important step in making sure that other people know what you want.
“Just do it! There is probably no good time but my own theory is that the more naturally you speak of it, the easier it gets and, even if they don’t like to hear it, your family will at least know what you want to happen.”
“Go ahead. Be bold. You may find them more in tune with you than you thought. Everyone has an opinion and has a right to voice it, you included!”
“Don’t allow someone else’s issues or barriers to prevent you from expressing your wishes.”
“Be honest, be calm, be determined.”
What if I don’t have anyone I can talk to or can’t have the conversation?
You may not have anyone you feel you can talk to about your wishes, or you may find it too difficult to have the conversation. If this is the case, you can still plan for the future by recording what is important to you in writing and sharing this with your doctor and healthcare team. The section in this guide called ‘What next? – Recording my wishes’ gives you more information on how to do this.
Having the conversation with my doctor
It is important to speak to your doctor, nurse or someone involved with your care about your wishes.
They can:
- Help you to understand your treatment options so you can decide what is right for you.
- Support you to think through any decisions about medical treatment, making sure you understand how any decisions or choices will affect you.
Any choices you make about your future medical treatment are your own. If your doctor disagrees with your choices, this does not necessarily mean you should change them.
Talking about your wishes for care and treatment with your doctor or healthcare team can feel challenging.
In this section, we have included some concerns raised by the people we spoke to, and suggestions from others about how to address them.
Concern 1
I haven’t begun the conversation yet… I would like to but I’m worried it would be seen as wasting time when she has such a lot of patients to see.
“My doctor said he wished more people planned in advance. Life is simpler if doctors know what you want.”
“Don’t worry about wasting time – this is as important as taking personal responsibility for every other area of your life.”
Concern 2
My doctor doesn’t want to talk to me about dying. I think he feels his job should be to make me feel better.
“Don’t accept unwillingness to discuss your future treatment or the end of life. If necessary, ask to see a different doctor.”
“Advise the surgery what the appointment is for beforehand, so that the GP is forewarned and it will then be easier to start the conversation.”
“Be prepared. Do research first and don’t be afraid to ask difficult questions.”
Concern 3
I’ve recently changed GP and I’m worried she won’t take me seriously if I talk about when I die as I’ve got nothing wrong with me.
“I took my Compassion in Dying forms into the appointment with me. It gave the topic legitimacy – it says “Look, someone else has been thinking about this too!“
Concern 4
I often struggle to get an appointment. Once I’m in there, five minutes doesn’t really seem long enough to get into the conversation.
“I made a double appointment, which gave us more time to talk.”
What next? Recording my wishes
Why do I need to record my wishes?
Recording your wishes allows you to express who you are and what is important to you. This gives you control over your treatment and care, and reassurance that the right decisions will be made. It can also be a good way to start conversations with your friends and family about what you want in the future.
Many people think that their family or next of kin can make decisions about their treatment or care if they are unwell, but this is not always the case. Even though these people should be consulted when a decision is made, they won’t have the final say
82% of people have strong views about their care at the end of life, yet only 4% of people have recorded their wishes in a legally binding way, such as a living will (advance decision) or a lasting power of attorney.
How can I record my wishes?
There are three ways you can record your wishes and plan ahead in England and Wales.
You can make:
You can choose just one or you can do all three. These documents will only be used if you can no longer make or communicate a decision for yourself.
If you live in Scotland or Northern Ireland and would like information on how to plan ahead please contact us.