Advance care planning

There are different ways someone can list their wishes and choices for their care towards the end of their life. It is sometimes called advance care planning.

It is helpful for the person you are caring for to plan while they are well enough to do so, and can make decisions. Their healthcare team can tell them more about the forms they can use.

Planning ahead can help them talk to professionals and others involved in their care about what they want. As their carer, it can help you and others feel better about making these decisions, if the person becomes unable to make decisions for themselves.

Advance care planning can include:

  • making an advance statement
  • making an advance decision to refuse treatment (or advance directive)
  • creating a power of attorney
  • making a will.

We separate information about planning ahead for people diagnosed with cancer.

It may be hard to talk about these plans with the person you are caring for. We have information about the emotional effects of caring.

Advance statement

The person you are caring for can tell people what they want for their future care by making an advance statement.

This is a written statement of their views and wishes that can be used if they become unable to make decisions for themselves. It helps carers, family, friends and healthcare professionals decide what is in the person’s best interest.

The person can write it themselves, or it could be a record of a conversation they have had with a GP, or nurse.

It can include things like:

  • what treatment they would prefer to have
  • how they would like to be cared for
  • where they would like to be cared for.

An advance statement is not legally binding. But anyone who is making decisions about the person’s care must look at it when deciding what is best for that person. In England and Wales, a document called Preferred Priorities for Care can be used to make an advance statement.

Advance decision to refuse treatment (ADRT) or advance directive

The person you are caring for can also decide to refuse some treatments in advance. This is called:

It is also sometimes called an advance decision, or living will.

It is a good idea for the person you are caring for to talk about these decisions with their healthcare team.

Power of attorney

If the person you are caring for wants you to manage things for them, they can arrange a power of attorney. This is a legal document that gives you the authority to make decisions for them in certain situations.

The person must have the ability to make their own decisions (mental capacity) when they set up the power of attorney. Depending on where they live in the UK, it can include decisions about:

  • medical care and treatment
  • moving into a care home
  • money and property.

There are different types of power of attorney and the laws about power of attorney are different across the UK. They can be temporary or permanent. More than one person can be chosen as an attorney.

A temporary power of attorney is only for a set time. For example, it could be while the person is staying in a care home. It stops when the set time ends or the person decides to cancel it.

A permanent power of attorney

If the person you are caring for thinks they may lose the ability to make decisions for themselves, they can arrange a permanent power of attorney.

This gives someone they trust the power to take over their property and financial affairs permanently. It also gives them legal permission to make decisions on the person’s behalf if they become unable to do so.

This is called:

The person you are caring for will need to complete the power of attorney forms, and register it. It is a good idea to get advice from the local Citizens Advice or a solicitor.

Making a will

A will gives instructions about who you want to give your money and belongings to when you die.

As part of planning ahead, it is a good idea for the person you are caring for to make a will. Or they may want to update an existing will. This makes sure that their wishes will be followed when they die.

If they do not make a will, there are laws about how their property will be passed on. This includes who sorts out their estate and who their estate is passed on to. It can take much longer to sort out their estate.

A will is a legal document and must be prepared properly. But it can be simple and does not cost much. It is best to use a solicitor. Some charities offer a free will-writing service. Macmillan also offers a discounted will-writing service.

Making difficult decisions

There may come a time when the person you are caring for cannot make decisions for themselves. If you have power of attorney, you may be involved in making decisions for them. Or their healthcare team may involve you in decisions about their treatment and care. This could include decisions about stopping treatment, or whether the person should be resuscitated or not.

If the person has made an advance statement or advance decision to refuse treatment, you might already know their views and wishes. Or you may have already had conversations with them that will help you make difficult decisions.

You might have made your own notes about what they want to happen. This will help remind everyone what was said and avoids any mistakes.

Sometimes it can be difficult to make decisions because other people also want to be involved. Or you may not want to be involved in making decisions at all.

Every person and their relationship with the person they are caring for is different. Use your own judgement and rely on the trust between you and the person.

Talk to other people involved in their care

It is important to talk to any family members or friends who are involved in the person's care, to make sure you all agree.

It also helps to have an honest conversation with the health and social care professionals involved. They can offer information and advice to help you make decisions.

It is important you fully understand what each option is, and how a decision will affect the person you are caring for.

If a hospice is involved in caring for the person, the staff will support you and offer advice. Hospices offer a range of services, and not only at the end of life.

If you can no longer care for the person at home

There may be a time when it is not possible for them to stay at home until the end of their life.

This may be because their symptoms have become too difficult to manage at home. It can also be because it has become very tiring and difficult for you to care for the person at home.

The GP or palliative care team can talk to them, and help them understand why their wishes cannot be met.

Although it can be disappointing, it is important to know that you have done your best. It does not need to be the end of your caring role. You can still visit and be closely involved in their care.