Planning ahead while living with cancer

If you have a serious illness that could shorten your life, you might think about planning ahead for your future care. 

Even people who do not have a serious illness might want to make decisions about their future care.

Planning ahead means that people will know your wishes, even if you become very unwell and cannot make a decision or communicate.

This information is about planning ahead in England, Wales and Scotland. In Scotland planning ahead is now called Future care planning.

We have separate information about advance care planning in Northern Ireland.

Planning ahead can also help people who are important to you, like family or friends, and healthcare professionals make decisions for you.

Having a written record of your wishes or an advance care plan helps your healthcare team, family or friends to understand what is most important to you.

For example, if the cancer is very advanced and treatment is not helping, you may not want antibiotics if you develop an infection. Or you might prefer to be cared for at home or in a nursing home instead of in hospital, if possible. Talking about your options with your healthcare team can help you to plan.

Planning ahead can be hard. But making a plan can help you to talk with your healthcare team, family or friends about what matters to you. It can help everyone understand the care, treatment and support you might need in the future.

You may also want to plan how you will pay bills and access your money if you are unwell and unable to be at home. You may want to arrange for a family member or friend to do this for you.

Planning ahead can cause many different emotions, particularly if you are already coping with an illness. You may feel sad, anxious and scared. These are normal reactions when coping with uncertainty about the future.

Talking to family, friends or people close to you about how you feel can help.

If you need more support, ask your healthcare team about finding a counsellor or psychologist. This can be helpful, especially if you find it hard to talk about your feelings with people close to you.

We have advice to help you cope with your emotions.

You can write down your wishes about any medical care or treatment you would not want if you cannot make or communicate your decision.

• In England and Wales, this is called an advance decision to refuse treatment (ADRT). An ADRT is legally binding if it meets the requirements set out in the  Mental Capacity Act 2005. This means if your healthcare team know about it, they must follow it.
• In Scotland, this is called an advance directive or a living will. An advance directive is likely to be treated as legally binding if it is properly prepared. This means your healthcare team will almost certainly follow it.

Writing a will makes sure your wishes are followed after you die. It means that your loved ones are provided for in the way you want. It is easier to make a will when you are feeling well.

A will is a legal document. It gives instructions about who you want to give your money and belongings (possessions) to when you die. It may also include instructions about:

• who you would like to look after your children or anyone who is dependent on you (dependants)
• any specific funeral arrangements you want.

We have more information about writing a will.

You may want to be involved in planning your funeral. You might want to think about whether you want to be buried or cremated, or whether to have a religious service. 

We have more information about funeral planning which might help.

You may want to think about what will happen to any online accounts if you become unable to use them. This may include what you want to happen to photos, videos, emails or other information you have stored online.

You might want to share a list of certain passwords with someone you trust. For example, so they can use your computer, phone or tablet. Or so they can manage some online or social media accounts for you.

Some people decide to write a ‘social media’ will. This is a way of saying what you would like to happen to your social media accounts after your death. digitallegacyassociation.org has more information about this type of planning.