Making plans about your future care
This information is for people with pancreatic cancer that can’t be cured. It explains how to plan for your care in the future. This is called advance care planning.
As you become less well, you may be less able to make decisions about your care or to tell your doctors or nurses about your wishes. This means that it can be useful to think early on about how you want to be cared for in the future.
This can be difficult or upsetting to do, but it can help you to feel more in control. It also makes it easier for the people around you to follow your wishes. Pancreatic cancer can grow quickly, so things may happen quickly.
Think about what’s important to you, where you would like to be cared for, and what type of care you hope to have. You may want to talk to your family about your wishes first. The information below should help explain the kind of things you can plan.
You can talk to your doctors or nurses at any time about how you would like to be cared for in the last weeks and days of your life – you don’t need to wait for them to speak to you about this first. The earlier you think about what you would like from your care, the more likely it is that you will get the care you want, as your healthcare team will have time to plan your care.
There are different ways of making decisions about your care and recording your wishes, depending on the type of decision you want to make.
- An advance statement or a preferred priorities of care document allows you to record what care you do or do not want. It can be used to record anything about your health or wellbeing that you want your healthcare team to know. In Scotland, it’s called an anticipatory care plan and in Northern Ireland, it’s called an advance care plan.
- An advance decision to refuse treatment allows you to say what treatment you don’t want. In Scotland, it is called an advance directive.
- A Lasting Power of Attorney lets you appoint someone you trust to make decisions for you if you are not able to.
You don’t have to make decisions about your care if you don’t want to or if you don’t feel able to. Don’t feel pressured into making any decisions that you’re not comfortable with.
Recording your wishes
If you would like to record your wishes, ask for help from a member of your healthcare team, such as a palliative care nurse.
Your doctor or nurse will record your conversation in your medical notes or in a personalised care plan, so the whole healthcare team know what your wishes are. A personalised care plan may include details of your wishes, where you would like to be cared for, and the care you need now and may need in the future. Your care plan may also include an advance statement or advance decision to refuse treatment, if you have these.
You can change your mind at any time and your doctor or nurse will update your medical notes or care plan.
You may want to write down what is important to you about your future treatment and care. This can guide anyone who might have to make decisions for you if you are too ill to make decisions yourself. In England and Wales, this is called an advance statement. In Scotland, it’s called an anticipatory care plan and in Northern Ireland, it’s called an advance care plan.
If you live in England or Wales, you can use a preferred priorities for care document to record your wishes. Macmillan Cancer Support and Dying Matters both have documents you can use. Wherever you live in the UK, Compassion in Dying’s My Decisions website allows you to record your wishes, which you can then print, sign and share.
You can include anything that is important to you, such as:
- what you would prefer for your everyday care
- if there are any treatments that you would want or not want to receive
- where you would like to die
- who you want to be with you when you die.
You don’t have to include anything you don’t feel comfortable with and you can change your wishes at any time.
Bear in mind that, although everyone will do their best to follow your wishes, this isn’t always possible. You might want to think about what you want to happen if your preferred choices aren’t possible.
Make sure your family know where to find your written record. Remember to take it with you to any routine or emergency medical appointments so that the medical staff know what your wishes are.
This used to be called a living will. In Scotland, it is called an advance directive. It allows you to record which treatments you don’t want to receive if you’re not able to make or communicate a decision about your care in the future. For example, you may not want treatment to extend your life once your cancer advances to a certain stage. You can’t use an advance decision to ask for a specific treatment, only to say you don’t want a treatment.
You can update an advance decision at any time, for example, if you change your mind or if your health changes.
When an advanced decision is correctly written, it is legally binding. Compassion in Dying have more information about what needs to be included to make sure it is legally binding.
A Lasting Power of Attorney is a legal document. You can name one or more adults you trust to make decisions on your behalf if you’re not able to yourself. In England, Wales and Scotland, there are two types of Lasting Power of Attorney. One allows someone to make decisions about your health and welfare, the other is for your property and financial affairs. You will need to register the Power of Attorney, which will involve paying a fee. You may want to get advice from a solicitor, the Office of the Public Guardian or from Citizens Advice.
In Northern Ireland, there is an Enduring Power of Attorney for your property and financial affairs but there isn’t one for making decisions about health and welfare. If you are no longer able to make decisions about your care, your healthcare team should speak to the people close to you, to agree on the best care for you. But they don’t legally have to follow these wishes.
Making plans for after you die
Some people feel comforted to know that they have made plans for what should happen after they die. Macmillan Cancer Support and Marie Curie have information on some of the things you might want to think about, including:
- making a will
- organ donation
- planning your funeral
- making sure your family and any pets are looked after
- protecting your online and social media accounts.
Published March 2018
Review date March 2020