How to record your end of life wishes

Advance care planning

Many of us want to have a say about where we die, and the type of treatment and care we receive at the end of life. But fewer of us take the step of recording our wishes. 

Advance care planning is the process of deciding how you would like to be cared for at the end of your life, and communicating those plans to others around you. By letting everyone know your preferences in advance, it’s more likely that your wishes will be met, even if a time comes when you can no longer speak for yourself.

These plans can cover any aspect of your end of life care. Some typical areas include:

• where and how you’d like to be cared for
• your medical preferences, including any specific treatments you don’t want to receive
• who should speak on your behalf
• where you’d prefer to die
• any preferences you may have for your funeral. 

The best way to ensure that people know about your wishes is to put them in writing. It makes it easier to share the information with everyone involved in your care. Make sure you give people copies or let them know where you have put any documents so they can find them easily in case of an emergency.

How to make an advance statement

Preferences about how you would like to be cared for can be recorded in an advance statement.

An advance statement is a way for you to explain the things that matter to you about your care, in case you lose the ability to make your own decisions – in other words, if you lose mental capacity. This is a general statement about your care wishes.

It can include any information that’s important to you, such as where you would like to be cared for, who should be consulted about your care, or other personal preferences, such as dietary needs or whether you prefer a bath or shower.

This is not a legally binding document, but those involved in your care have a responsibility to take account of your preferences where possible.

There is no specific form for an advance statement. You don’t even have to write your wishes down – you can just tell family, carers or health professionals. But it’s a good idea to put it in writing, so that everyone involved in your care can be clear about how you’d like to be cared for. You may find some sample forms online, such as this NHS advance statement sample form, or you can create your own document.

You don’t need to sign your advance statement or have it witnessed. But it’s better if it is signed and dated so people can be confident that it represents your wishes. It should also include your name, date of birth and address.

What is a living will (or advance decision)?

If there are specific medical treatments that you would prefer not to receive, you can record your wishes in a formal document called an Advance Decision to Refuse Treatment. This is also often referred to as a ‘living will’. This is also an opportunity to indicate whether or not you wish to be resuscitated if you stop breathing or your heart stops.

You can use an advance decision to refuse specific medical treatments in the future. This includes life-sustaining treatments, such as:

• using a life support machine to help you breathe
• being resuscitated if your heart stops
• being fed artificially, for example through a tube into the stomach.

You cannot use an advance decision to:

• refuse care that will make you comfortable, such as pain relief
• refuse the offer of food or drink by mouth 
• ask for specific medical treatments – you can’t insist on a treatment that your doctors believe to be unnecessary, futile or inappropriate
• nominate someone to make decisions on your behalf – you can only do this through a Lasting Power of Attorney for health and welfare
• request help to end your life.

Legally, you don’t have to put your advance decision in writing, unless you’re refusing life-sustaining treatment. But the NHS strongly recommends that you do make a written document. This is important because it helps everyone to be clear about your preferences and makes it more likely that your wishes will be followed.

How to write an advance decision

There are no standard forms for an advance decision, but guidelines suggest you should:

• include your full name, date of birth and address
• provide the name and contact details of your GP and indicate whether they have a copy of the document
• explain clearly what treatment(s) you are refusing and in what circumstances – general statements about not wanting to be treated are not enough
• state that the advance decision should be used if you lack the capacity to make your own decisions
• sign and date the document
• get a witness to sign it – you are legally required to do this if you’re refusing life-sustaining treatment.

You may also find it helpful to talk to a solicitor. They can help you explain your wishes clearly so that there is no confusion about what you mean.

The charity Compassion in Dying has an online service to help you make an Advance Decision or Advance Statement - mydecisions.org.uk/. You need to create an online account to use the service.

What is a ‘do not resuscitate’ order?

This is a decision that can be placed on your medical records instructing doctors not to attempt to resuscitate you if your heart stops beating or you stop breathing. It’s often referred to as a ‘do not resuscitate’ (DNR) order, but the correct term for this type of decision is a ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decision. It can only be approved by a doctor or another medical professional.

Read more about how and when DNACPR decisions can be made.

Planning your own funeral

Any preferences you may have for your funeral can also be noted down, either as part of an advance statement or in a separate funeral plan. This will make it easier for your loved ones to plan the funeral you would have wanted.

You could start by creating a checklist of things you want to cover in your plan and then decide how to record it. There are plenty of funeral planning guides available online that you can use. Or you can simply start with a blank piece of paper and jot down your preferences.

Don’t forget that most funeral directors would be happy to talk to you about your options if you need help thinking about what you’d like.

Some of the things to consider include:

• where you’d like to hold your funeral
• whether you’d like to be buried or cremated
• if cremated, what you’d  like to happen to your ashes
• if you'd like your loved ones to view your body
• whether you prefer a religious service or not
• if there’s someone you would like to speak at your funeral
• any preferred music or readings
• the clothes you’d like to be dressed in
• what kind of reception you might like
• if you have a preferred funeral company.

It’s a good idea to let your loved ones or carers know that you’ve written down your wishes. Put your list somewhere easy to find, ideally with other helpful documents, such as a copy of your will and details of any pre-paid funeral plans.

Pre-paid funeral plans

One way to protect your family from the unexpected expense of a funeral is to take out a pre-paid funeral plan. These let you pay for a funeral in advance, and effectively fix the costs at current prices.

Learn more in our guide to pre-paid funeral plans.

Power of Attorney

A Lasting Power of Attorney (LPA) lets you give someone you trust the legal authority to make decisions on your behalf, in case a time comes when you can longer make decisions or communicate them for yourself.

An LPA can cover decisions about your finances and your property, or decisions about your medical treatment, care and living arrangements. Read more about the different types of Power of Attorney and how to set one up.

If you don’t have an LPA in place and you are no longer able to make decisions, your relatives will have to apply to the Court of Protection to establish who can make decisions on your behalf. This can be a long and expensive process.

Making a will

If you haven’t done so already, this is also the time to make a will, or check that your existing will is up to date. Making a will lets you decide what happens to your money, property and possessions after you die. You can also use a will to determine who should look after anyone who is dependent on you and who should care for any pets you have. 

If you don’t make a will it can take longer to sort out your affairs and it may mean that your possessions and money are not passed on to the people you would like to receive them.

Read more advice on what you should include in your will.

Organ donation

In England, Scotland and Wales, organ donation is now ‘opt-out’ by default. That means that all adults (with a few exceptions) are considered organ donors when they die unless they have recorded a decision not to donate.

If you don’t want to donate your organs then you should register your decision to refuse to donate with the NHS Organ Donor Register.

Remember to speak to your family and loved ones about your decision. Your family will always be involved before donating takes place. 

Organ donation in Northern Ireland is currently an ‘opt-in’ process. Currently, the only way to register your wish to be an organ donor is to opt in and sign the NHS Organ Donor Register.