Talking about your care

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Introduction

It’s a difficult subject, but it’s important to talk to the people closest to you about your wishes for your health and wellbeing if you become unwell. During a health crisis, you or your family need to be able to tell your care team how you want to be cared for. Having a plan ensures you can receive the most appropriate care, with the treatments that work best for you.

When you’re having these conversations, it’s helpful to write down everything you decide on – this will make it easier to pass on the important information to your care team.

The things that are most important to you might change if there’s a change in your circumstances – if that happens, you can always update the information you’ve given to your care team.

Deciding whether to talk about your care

Everyone should consider with their loved ones what their wishes would be if they became unwell – even if they’re in good health. There are situations where it’s important to make these decisions, such as after being diagnosed with a health condition, but you don’t have to be unwell to start the conversation.

Talking about your care with your loved ones is necessary and important because when people become unwell, there can be confusion and conflict over their wishes. This can put loved ones in the difficult position of making decisions for you when they don’t know what you want, and lead to challenges for your care team.

The coronavirus pandemic is affecting some aspects of care, even for people who don’t catch the virus, or who catch it but don’t become seriously ill. This means that it’s important to think about how considerations like infection control measures could affect your care.

Having enough information

Knowing about the services and support available to you, and being able to have conversations about care with your loved ones, gives you the ability to confidently discuss your wishes with your care team. If needed, you can also record these wishes in an Anticipatory Care Plan (ACP).

Learn about making a plan for your care during the coronavirus pandemic

The first thing to think about is what matters most to you. For example, if you become unwell, what are you most concerned about? There are certain considerations about care that should be discussed with loved ones, even if it’s difficult or upsetting to think about.

Having enough information to make decisions

If you have a long-term condition, it’s important to make sure you have enough information about the condition to make decisions about what would happen if you became unwell. Use the information on NHS inform, or talk to your GP, to find out the effect a serious health event could have. This will help you to discuss the important decisions with your loved ones and care team in detail.

Cardio-pulmonary resuscitation (CPR)

CPR is an emergency treatment that tries to restart your heart and breathing when they have stopped. Whether or not CPR succeeds depends on a number of factors, including the seriousness of your condition.

If you don’t want to have CPR performed, you can have a Do Not Attempt Cardio-pulmonary Resuscitation (DNACPR) order signed as part of your care planning. This should be discussed in advance with your family and care team.

When it comes to decisions about CPR, your wishes should always be respected.

Learn more about CPR and DNACPR orders

Care at home or hospital

When having conversations about your care wishes, you should think about whether you’d like to be cared for at home or at hospital if you become unwell. If you have an ACP, you can record that information in your plan.

If you don’t have an ACP, it’s important to discuss with loved ones and carers, particularly anyone who lives with you, whether or not you want to go to hospital if you have a serious health event.

Learn more about deciding whether or not to be cared for in hospital

Learn more about making a plan for your care during the coronavirus pandemic

Starting conversations about care

When you’re preparing to have a discussion about your care, there are a few things it can help to consider.

Who do you want to talk to?

Think about who you need to have these conversations with. This could be those closest to you, for example your partner, close family members, and friends. You could also talk to your care team, for example your GP, nurse, consultant, or carers.

When do you want to talk?

There are some things you might want to do or find out about before you start having these conversations. For example, you might want to wait until you’ve done some research and feel you have enough information about your condition. You might also want to wait until after your next check-up, or until you’ve had a chance to speak to your care team about your condition in general.

Where do you want to talk?

There’s no ‘wrong’ way to have these conversations – the important thing is that you feel comfortable.

Some people might prefer to have these conversations at home, or make sure they do it in person. However, they could also be carried out over the phone, or using videoconferencing.

You might prefer to have these conversations with family members while a doctor or another member of your care team is present – for example, as part of a routine appointment. The important thing is that you’re comfortable and free to talk.

What do you most want to consider?

Before starting these conversations, it might help to think about the 3 most important things that you want those closest to you, and your care team, to understand about your preferences and wishes. Take some time to consider what matters to you – if it helps, write the 3 important things down.

Conversation starters

For many people, the hardest part of talking about care is starting the first conversation. It can also be difficult to know what subjects are important to cover. Here are some ideas for getting the conversation started with those closest to you and your care team.

Starting the conversation about your own care

Here are some ways you could start the conversation:

“Can we have a chat about something?”

“I need to think about my future healthcare – can we talk about it?”

“I’ve been thinking about healthcare, and I’d really appreciate your thoughts on some decisions I’ll have to make.”

“I’ve been thinking about my future healthcare, and I want to make some decisions about what we’ll do if I get seriously ill.”

Starting the conversation about someone else’s care

It can be more difficult to start the conversation about someone else’s care than your own, because it’s a hard topic to bring up, especially with someone close to you. Here are some ideas for starting the conversation:

“Can we have a chat about something?”

“Can we talk about what you want for healthcare in the future?”

“I’d really appreciate if we could talk about healthcare decisions – is there anything you’d like to discuss with me?”

“I’ve been thinking about what might happen if you get seriously ill – have you made any decisions about what you’d like to happen?”

What to talk about

Here are some ideas for keeping the conversation going and making sure you discuss everything you need to.

Do you have any particular concerns about your health? Is there anything you want to plan for at the moment?

What would be important to you if you have to go into hospital? For example, making sure loved ones and pets are cared for, or the people you’d really like to talk to.

Learn more about making a plan for your care

If you became seriously ill, where would you want – or not want – to receive care? For example, would you like to be cared for in hospital or at home/in your care home?

Read about the different places you can be cared for

How would you like to be cared for at the end of your life? Is there anything you want me to know about?

Read about palliative care

Are there any kinds of treatment you would want, or wouldn’t want? For example, what are your thoughts about resuscitation – in particular cardio-pulmonary resuscitation (CPR) and Do Not Attempt CPR (DNACPR) forms?

Learn more about CPR and DNACPR forms

Are there any financial or legal issues you’d like to talk about? For example, making a will or power of attorney?

Learn more about legal and practical issues to discuss

Challenges when talking about care

Here are some tips to make having care conversations as easy as possible:

be patient – some people might need more time to think about care wishes than others
you don’t have to cover everything in one conversation – this could be the first of a number of discussions, and every conversation is important and helpful
while you should try to cover all the subjects listed above, you don’t have to steer the conversation – let it happen naturally
try not to judge if someone’s wishes for your care, or their care, aren’t the same as your own – care planning is a very personal and individual thing
remember that you and those closest to you can always change your minds if circumstances change – care planning usually involves ongoing conversations

Other options for making care decisions

If you aren’t able to have these conversations with those closest to you, or if you’re concerned that your wishes for care won’t be respected, there are other options.

Making an Anticipatory Care Plan (ACP) allows you to make choices about the type of care you’d like to receive if you become unwell. Your ACP will be added to your health records for use if you become unwell.

Learn about making an ACP

Another way to ensure that your wishes are written down and can be followed is to make an Advance Directive. This can be used to make decisions about your care if you become seriously unwell.

Learn about Advance Directives

You can also assign someone Power of Attorney – this means giving someone you trust the legal authority to make certain decisions on your behalf, if you become unable to.

Learn about Power of Attorney

Learn more about legal and practical steps that can be taken if you become unwell

Read information from Citizens Advice Scotland about wills and other decisions and arrangements around death

Next steps

After you’ve had these conversations, remember to keep the lines of communication open in case anything changes.

Write down everything that’s been discussed so you can be sure you’ve remembered all the decisions that have been made, and can pass on the details to your care team.