Planning ahead while living with cancer
Planning ahead when you have cancer, can help people know how you would like to be cared for if you ever become unable to make choices yourself.
On this page
Why is it important to plan ahead?
How you can plan ahead
Coping with your emotions
Your wishes for your care
Advance decisions about treatment you would not want
Power of attorney
Writing a will
Organ and tissue donation
Keep your documents safe and up to date
Online accounts and social media
Who can help you planning ahead
About our information
How we can help
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.
Booklets and resources
There are different things you can do to plan ahead. You do not have to do them all. It may be helpful to start with the ones that are most important to you.
Talking to close family members or friends about your wishes can help. Health and social care professionals can also give you support.
We have more information about how to plan ahead and people who can help.
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 talk to people about your wishes and what matters to you, but it is usually better to write them down. This is often called your advance care plan. In Scotland it is called your future care plan.
You can include any specific wishes about how and where you would prefer to be cared for if you become unwell.
This may be at home, or in a hospital, care home or hospice. There are different documents that can be used.
We have more information on who can help you with you plan and what you could include.
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.
A power of attorney is a legal document that lets you choose (appoint) someone to make decisions for you. It needs to be registered with the Office of the Public Guardian before it can be used.
England and Wales
In England and Wales, there 2 types of lasting power of attorney (LPA).
LPA for financial decisions
This includes things like paying bills or selling your home. It can be used when you are still able to make your own decisions. Or you can set it up to start once you become unable to make decisions for yourself.
LPA for health and welfare decisions
This includes things like giving consent for treatment, care, medication and where you will live or be cared for. This LPA can only be used if you become unable to make decisions for yourself.
In Scotland, there are 3 types of power of attorney.
Continuing power of attorney
Continuing power of attorney is for financial and legal decisions, including paying bills and selling your home.
Welfare power of attorney
Welfare power of attorney is for health and care decisions, including treatment, care, medication and where you live or are cared for.
Combined power of attorney
Combined power of attorney combines the first 2. It gives your attorney financial and welfare powers.
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 might want to write down any wishes you have about organ and tissue donation or donating your body to research.
It might be possible to donate organs, or more usually body tissue, if you have had cancer.
You may want to donate your body for medical research or teaching. If it is possible for you to do so, you might also want to write this down.
Make sure that family, friends, and health and social care professionals know where important documents are so they can find them easily and quickly. Wills can be recorded at nationalwillregister.co.uk.
It is a good idea to make a list of important documents and where to find them. You could give a copy of the list to anyone who is helping to manage your affairs.
The list could say where to find things like:
- your advance care plan (wishes for your care) or future care plan
- an advance decision to refuse treatment or advance directive
- your will
- your funeral plan
- your bank and building society details
- any insurance policies you have
- your birth certificate
- your marriage or civil partnership certificate, if you have one
- your national insurance number
- the details of your accountant, solicitor and tax inspector.
Review your documents regularly
Reviewing your documents is important to make sure they include your most recent wishes. These might change over time, especially if your situation changes.
You can review them with your health and social care professionals as part of your planning conversations. They can help you write down any changes and make sure your documents are up to date. It is also important to talk to the people close to you about any changes in your wishes.
You may find it helpful to use our planning ahead checklist. Make sure someone close to you knows where you keep this checklist.
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.
Different organisations provide information and support to people planning ahead. Some provide documents or care plans. You can complete these by yourself, or with support from family, friends and healthcare professionals.
Support from Macmillan
Macmillan is also here to support you. If you would like to talk, you can do the following:
Below is a sample of the sources used in our advanced care planning information. If you would like more information about the sources we use, please contact us at email@example.com
National Institute for Health and Care Excellence. Advance care planning – A quick guide for registered managers of care homes and home care services. 2019. Available from: www.nice.org.uk/about/nice-communities/social-care/quick-guides/advance-care-planning [accessed May 2023].
National Institute for Health and Care Excellence. Decision making and mental capacity. 2020. Available from: www.nice.org.uk/guidance/qs194 [accessed May 2023].
NHS England. Universal Principles for Advance Care Planning (ACP). 2022. Available from: england.nhs.uk/wp-content/uploads/2022/03/universal-principles-for-advance-care-planning.pdf [accessed May 2023].
Healthcare Improvement Scotland. Anticipatory Care Planning in Scotland: Supporting people to plan ahead and discuss their wishes for future care. 2020. Available from: www.healthcareimprovementscotland.org [accessed May 2023].
GOV.UK. Office of the Public Guardian. Make, register or end a lasting power of attorney. Available from: www.gov.uk/power-of-attorney/make-lasting-power [accessed May 2023].
Office of the Public Guardian (Scotland). Power of attorney. Available from: publicguardian-scotland.gov.uk/power-of-attorney/power-of-attorney/what-is-a-power-of-attorney [accessed May 2023].
Citizens Advice. www.citizensadvice.org.uk [accessed January 2023].
GOV.UK www.gov.uk [accessed January 2023].
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Viv Lucas, Consultant in Palliative Medicine.
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