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. The information on this page explains the kind of things you can plan.

It can be useful to think early on about how you want to be cared for in the last weeks and days of your life. As you become less well, you may be less able to make decisions about your care or tell your doctors or nurses what you want.

The earlier you think about what you would like, the easier it is for your healthcare team and those close to follow your wishes. This can be difficult to think about, but it can help you feel more in control. Think about what’s important to you. You may want to talk to your family about your wishes.

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 have to wait for them to speak to you about this.

Recording your wishes

Ask a member of your healthcare team to help you record your wishes, such as your GP or a palliative care nurse. They will record your conversation in your medical notes or in a personalised care plan, so the whole healthcare team know what your wishes are.

Your 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. There are different ways of 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.

Your wishes may change, and you can make changes to your care plan at any time. Your doctor or nurse will update your medical notes or care plan. Don’t feel pressured into making any decisions that you’re not comfortable with.

Compassion in Dying and Macmillan Cancer Support have detailed information about planning your care.

Advance statement

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.

Advance decision to refuse treatment

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.

As part of the advance decision to refuse treatment, your healthcare team may ask you or your family to complete a DNR (do not resuscitate) form. This may also be called a DNACPR (do not attempt cardiopulmonary resuscitation). This is the treatment given if your heart suddenly stops beating, or you stop breathing. This can be a difficult decision to make, and your healthcare team will talk you through it in detail. You may want to talk to those closest to you about this decision.

Lasting Power of Attorney

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. This might include decisions about your daily care, where you are cared for and the treatment you have. The other type of Lasting Power of Attorney is for your property and finances.

You will need to register the Power of Attorney, which will involve paying a fee. It can take up to 10 weeks to register, so it is best to think about this as early as you can. You may want to get advice from a solicitor, 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.

‘’We decided to transfer my husband’s car into my name, which gave us one less complication to worry about or sort out when it came to financial matters’’