Help with planning ahead

You may already be struggling with fears and uncertainties about the future. It is important that you do not feel alone when planning ahead. Health and social care professionals can help you, as well as family or friends.

You could write down your thoughts and feelings to help with these discussions. For some people it is a relief to start planning ahead and sharing their plans.

If you want to start planning ahead, you can talk to your:

• GP
• hospital doctors
• specialist nurse
• district nurse
• social worker
• other health and social care professional.

They will be able to tell you the best person to speak to.

Starting a conversation can feel difficult. You could say something like:

‘I’ve been thinking about making plans for my future care, in case I can’t make decisions for myself. Could you help me find out my options and explain what I need to do?’

It is a good idea to speak to a solicitor if you want to:

• make a will
• create a lasting power of attorney (England and Wales)
• create a power of attorney (Scotland)
• write an advance decision to refuse treatment (ADRT, England and Wales)
• write an advance directive or living will (Scotland).

These are important documents.

For information on finding a solicitor, you could contact

• The Law Society for England and Wales
• The Law Society for Scotland.

Try to involve people who:

• you are close to
• you can talk openly to
• could act on your behalf.

They can support you and help you to think about what you need to include. Involving them also helps make sure your wishes are carried out.

Your plans could mean they make decisions on your behalf or take more responsibility for your care. For example, if you would like to die at home, it’s important to discuss this with those close to you. You need to know if they think they will be able to help look after you, and any concerns they might have.

If they find it difficult to talk about

Sometimes family or friends find it hard to talk about a time when you will be very unwell. They may change the subject, or not want to talk about it. Try to explain why it is important for you to plan ahead, and how it would help you to talk about it.

You could try saying something like:

'I know it’s difficult, but I want to talk to you about how I would like to be cared for if I became very unwell.'

You could also ask them to read this information. Or you could write them a letter and ask them to talk to you about it when they feel ready.

Health and social care professionals can also support discussions with family or friends.

You can also join our Online Community to talk with people affected by cancer, blog about your experience and ask an expert your questions.

Before you write down your wishes, try to talk about your future care plan with a family member or close friend. This can be helpful if you want them to:

• be involved in your care
• help you make the best decisions about your treatment and care.

It can be reassuring for family and friends to know that you have recorded your wishes. Make sure they know where you keep your documents (see below).

It is also important to talk about your plans with the health and social care professionals looking after you. You may want to ask them how serious your illness is and what might happen in the future.

Once you have completed the document, share it with people who are important to you and anyone likely to be involved in your care.

This may include a:

• family member or a close friend
• GP or hospital doctor
• specialist nurse or district nurse
• social worker
• other health and social care professionals.

Your healthcare team will keep a copy of some of the information for their records.

Keep a copy in a safe place at home along with any other important documents. Tell people involved in your care where it is.

You might have a fridge sticker or note somewhere obvious in your home to tell an emergency doctor or paramedic where you keep your documents. Your family or carers can also help make sure your wishes are followed.

It is important to regularly review your wishes and keep them up to date. You can change your mind at any time, but remember to record your changes. If you make changes to your plan, tell all the people involved and give them an updated copy.

You may find it helpful to use our planning ahead checklists:

• checklist for England and Wales
• checklist for Scotland.

If you live in Scotland your healthcare professionals may record some of your wishes for your care on a Key Information Summary (KIS). This is an electronic record that is created and updated by your GP. It has information about what is important to you, and your wishes for your care. It can include information about an advance directive and the main decisions in it.

If you need urgent medical help when your GP surgery is closed, other NHS staff can get this information from your KIS. Your healthcare team can tell you more about the KIS document.

Your team may also help you to complete a ReSPECT document. It records what you would want to happen in emergency situations. For example, it sets out what treatment should be given if your heart and breathing stop suddenly.

You can ask your health and social care professionals if they have a document they use.

These statements about your preferences and wishes are not legally binding. This means they cannot be enforced by law. But healthcare professionals use them to help guide their decisions about your care.