Although MS is a lifelong condition, it isn’t considered a terminal one. But the truth is, none of us know what’s waiting for us around the corner. Planning for the end of life is something we can all be thinking about, no matter our age or our health. Thinking about your wishes early, and making informed decisions about your preferences and priorities, is an important first step.
Discussing these wishes with those closest to you can help you feel more in control and give you peace of mind knowing that they understand how you’d like to be cared for in the final months of your life.
What do we mean by end of life planning?
End of life planning involves thinking in advance about your preferences and making decisions about the final months of your life. It can include:
- deciding how you’d like to be cared for
- thinking about where you’d prefer to die
- making it clear if there are any treatments you don’t want to receive
- putting your affairs in order by making a will
- planning for your funeral.
Once you’ve thought about your wishes, it can help to share them with your close family so they’re aware of your preferences. However these conversations can bring about a range of emotions and starting them in the first place can be a real challenge. Here are some suggestions to help you begin the conversation around end of life planning with your loved ones.
Decide what you want to say
Take a bit of time to think about your wishes and exactly what you want to tell your loved ones. You might want to talk about the type of care you’d like to receive and any treatments you’d prefer not to be given. If you feel comfortable, you may want to let them know your preferences about where you’d like to die. As well as your future care, you may also want to talk about your funeral wishes and what you’d like to happen to your possessions. Make some notes on what you’d like to talk about – think about the things that matter to you most.
Choose the right time to talk
Have the conversation when you know what you’d like to say and, most importantly, when it feels right for you. You may want to let your family member or friend know in advance that you’d like to talk about end of life planning so it doesn’t come as too much of a shock for them when you bring it up.
If you’re not ready to have a face-to-face conversation yet, that’s completely okay too. Perhaps you could try expressing how you feel and the things you’d like to talk about in a letter or recording something on your phone instead.
Find the right setting
Have a think about where you’d feel most comfortable having the conversation. You’ll probably want somewhere that’s quiet and private, and somewhere you won’t be interrupted. That might be at your home or maybe while you’re out for a walk. Choose a place where you’ll feel most relaxed and at ease.
Start the conversation
Starting the conversation can be really difficult. You might want to plan how you’re going to bring up the topic and have some phrases ready in your mind. You might want to open with a question, “Have you thought much about...?” or perhaps a statement, “I know it's a hard conversation to have, but I’d like to talk about...”. Having these phrases ready can help you feel more comfortable getting the conversation started. Try not to worry about saying the wrong thing; there’s no right or wrong way to deal with difficult conversations; the most important thing is you’ve been brave enough to start it.
Take your time
Don’t feel like you have to cover everything in that one conversation. Spread it out into a few conversations over time. Talking about dying can be emotionally draining both for you and your loved ones, so break the conversations down into small chunks and take your time.
Prepare for different reactions
Everyone will respond to conversations about death differently. Some people will find it easier to talk about than others. Try to be respectful of people’s reactions, keep calm and show you understand. If the person you’re talking to is finding the conversation difficult, then you can always say, “Let’s stop talking about this for now and come back to it another time.”
Talk to your GP
It can be helpful to talk to your GP, or another health professional involved in your care, about end of life planning. They can make you more aware of the options available to you. Let your GP know in advance that this is what you’d like to discuss. You could book a double appointment so the conversation doesn’t feel rushed.
There isn’t a right or wrong way to have a conversation about your end of life care. It’s difficult to talk about dying. It’s not something any of us necessarily want to be reminded about. But it’s important to make your wishes known to those closest to you so they're aware of your plans and you have some peace of mind.
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