People with terminal cancer can make decisions about their future care.
Advance care planning
Your doctors and nurses might talk to you about advance care planning. This means making decisions about how you would like to be cared for if you become too ill to communicate your wishes in the future.
The doctor or nurse will write down your wishes. You can let them know at any time if these change.
There is no set way to plan ahead. You might find it helpful to talk through what’s best with one of your healthcare team. You can also talk about it with someone you are close to. And you can include your family and friends in the discussions with your doctors and nurses if you want to.
Living wills, advance decisions and advance statements
Many people make a living will when they know that they are going to die.
This is in case a time comes when you can no longer make decisions or communicate your needs. You can only make a living will when you are mentally able. So you have to do it before you need it.
Having it prepared can be reassuring for your next of kin and the health professionals involved in your care. They will only be able to use it if you lose the ability to make decisions for yourself. For example, if you are unconscious.
There are two types of living will. These are an Advance Decision and an Advance Statement.
Advanced Decisions (Advanced Directive in Scotland)
An Advance Decision (in England, Wales and Northern Ireland) is a set of instructions for your doctors and nurses if you can’t make decisions yourself. This is called an Advanced Directive in Scotland. Depending on which country you live in, this may or may not be a legal document.
This document makes sure that everyone knows what treatments you don’t want or which treatments you would like to stop. As long as you are able to make a decision, you can refuse treatment for any reason, even if this might lead to you dying. But you can't insist that doctors give you a particular treatment.
You can discuss your wishes and preferences with your doctor or nurse and your family. They can help you decide when your advance decision to refuse treatment would apply.
For example, you might decide that if your heart stopped beating, you wouldn’t want anyone to try and restart it.
The Compassion in Dying website has an Advanced Decision Pack that you can download.
This includes a form in which that you record any treatments you do not want to be given. This is only used if you become unable to make, or communicate decisions in the future. It also includes guidance to help you fill out the form.
An Advance Statement allows you to write down your wishes and preferences for the last year or months of your life. You can state what treatment or care you would like to receive. It can cover personal preferences and religious instructions. It can also include non medical information, such as the type of food you prefer, or what your religious beliefs are.
It isn't legally binding but doctors and nurses should take account of it.
There are different documents available to help you write down you wishes in this way. Some hospitals in England and Wales use a document called the Preferred Priorities for Care (PPC). Other hospitals have developed their own form. Do ask your team about an Advanced Statement, they can also help you complete it.
Lasting Power of Attorney
You might want to think about who will manage your financial affairs if you become unable to do this for yourself. This is called Lasting Power of Attorney.
The person you choose to make decisions on your behalf is known as an attorney. You can have more than one attorney. You can organise a Lasting Power of Attorney ahead of time, so that it’s ready when you need it.
You can also choose a person to make decisions on your behalf about your health and welfare. This is called a Health and Welfare Lasting Power of Attorney. A health and welfare attorney can make decisions about your medical care, where you are cared for or what you eat.
The process to register a lasting Power of Attorney is slightly different in England, Wales, Scotland and Northern Ireland. This is explained in the relevant government websites.
Cancer Research UK’s Legal Guidance Service
Cancer Research UK is currently offering a Legal Guidance Service. We are working with a team of trusted solicitors to help with various legal tasks that you may want to consider, including Will-writing, Living Wills and Power of Attorney. This is a pilot project at the moment. A face-to-face service is only running in Northampton, Norfolk and York. But there is a virtual service to the rest of England and Wales, where meetings are held by telephone or video call.
Individual care planning and care pathways
Individual care planning is another term you may hear. It is also sometimes called your personal care plan.
It is more general than the advance care plan and covers all your care needs.
Your doctor or nurse will ask you questions to find out what care you need and what your wishes are. They will ask about physical symptoms such as pain, as well as your psychological, social and spiritual needs. This is called a holistic assessment.
Based on the assessment, they will write an individual care plan to reflect your wishes and care needs.
Ask your doctor or nurse to find out about your care plan.