Making decisions and planning ahead

Recording wishes and choices for their care may help the person you are caring for think about the future. It is sometimes called advance care planning. As their carer, it may help you feel more confident about making decisions. Laws are in place to protect people who are unable to make decisions for themselves (their mental capacity).

Advance care planning can include:

  • Power of Attorney – A legal document made by the person you are caring for which gives someone permission to make decisions on their behalf. This can include decisions about their care and finances. This can be temporary or permanent.
  • Advance Statement – A general statement from the person you are caring for about their wishes. It can be used if they become too unwell to tell their healthcare team.
  • Advance Decision to Refuse Treatment – A decision made by the person you are caring for about not having certain treatments.
  • A will – A legal document made by the person you are caring for which includes wishes about who they would like to inherit their estate (their money, property and possessions).

Planning ahead

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

Advance care planning can help the person you are caring for think about the future. It can be a way of communicating what they want to professionals and others involved. As their carer, it may help you to feel less uncertain about making decisions. It can also make things easier for you and others close to them if they become unable to make decisions for themselves.

Advance care planning can include Power of Attorney, an Advance Statement, an Advance Decisions to Refuse Treatment or making a will.

It may feel very emotional to discuss these arrangements with the person you are caring for. We have more information about talking to someone who has cancer. It has tips about having difficult conversations and coping with your emotions.

Richard’s disease progressed quite quickly. Knowing what might happen with an illness is important because it enables you to plan ahead.

Alison


Power of Attorney

If the person you are caring for wants you to make decisions on their behalf, they can make a Power of Attorney. This is a legal document. It could give you (or someone else close to the per-son) the right to make decisions on their behalf, in certain circumstances. This can include decisions about their care and finances. There are different types of Power of Attorney. They can be temporary or permanent.

A temporary Power of Attorney

This is where someone is given the power to manage another person’s property and finances for a set period of time. This could be while the person you look after is staying in a care home or away on a long holiday. This is called an Ordinary Power of Attorney.

This can either be:

  • a general power, where the attorney has power over all property and finances
  • a specific power to deal with just one aspect, such as managing a bank account or selling a property.

An Ordinary Power of Attorney does not need to be officially registered. But it does have to be written in a certain way. This means the person you care for will need help from a solicitor. This type of power stops when the set period ends, or earlier if the person you care for cancels it.

An Ordinary Power of Attorney also comes to an end if the person who set it up loses the capacity to make decisions for themselves (their mental capacity). They may want to consider a permanent Power of Attorney instead.

A permanent Power of Attorney

This is where someone gives another person the right to make decisions for them permanently.

This may be called a:

  • Lasting Power of Attorney in England and Wales
  • Long-term Power of Attorney in Scotland
  • Enduring Power of Attorney in Northern Ireland.

In England, Scotland and Wales, it can include decisions about finances and property, and health and care.

In Northern Ireland, it’s not yet possible for someone to appoint other people to make decisions about their care and treatment. They can say how they would like to be cared for by using documents like the Advance Decision to Refuse Treatment.

This kind of Power of Attorney for health decisions may only come into effect once the person loses mental capacity.

Once this Power of Attorney has been made, it needs to be registered. This can take some time, so it is best to start the process as soon as possible. It’s best to get help from a solicitor.


Advance Statement

The person you are caring for can make an Advance Statement. This is a general statement of their views and wishes, in case they become unable to tell their healthcare team. It can include things like what treatment they would prefer and how and where they would like to be cared for. In England and Wales, people can use a document called Preferred Priorities for Care to give their Advance Statement.

An Advance Statement is not legally binding, but the healthcare team should consider it when deciding what is best for the person you care for.

There may be times when their wishes cannot be met, such as their choice to die at home. There may be a good reason for this. If they need to be in hospital, the professionals caring for them should explain why. There may also be times when you cannot cope and it has become too difficult to care for the person at home.

We have more information about Advance Statements.


Advance Decision to Refuse Treatment

The person you are caring for can refuse specific treatments in advance. They can do this by making an Advance Decision to Refuse Treatment. This is also known as an Advance Directive or a ‘living will’. It is a good idea for them talk about these decisions with their healthcare team.


Making a will

As part of planning ahead, the person you care for should make a will. Or if they already have a will, they may want to update it. Having a will guarantees their wishes will be followed when they die. This includes their wishes about who they would like to inherit their estate (money, property and possessions).

If the person you care for dies without making a will, their estate will be passed on according to the law. It often takes much longer to deal with the estate. This may not be the way the person you care for would like to leave their money and possessions, so writing a will could be very important.

Making a will is not as expensive or difficult as you might think, but it is a legal document and must be prepared properly. It is usually best to use a solicitor who will be able to help with the wording. They will make sure the person’s wishes are clear and that they are carried out exactly as they would want.

Macmillan offers a discounted will-writing service.

Marie Curie also has more information about making a will.


Making difficult decisions

There may come a time when the person you care for can no longer make decisions for themselves. As a carer, you may:

  • need to make decisions on their behalf (if they have given you Power of Attorney)
  • be asked about decisions that affect them.

For example, the doctor or nurse may ask you about stopping treatment or whether the person you care for should be resuscitated or not.

Sometimes it can be difficult to make decisions because other people who are close to the person want to be involved. Or you may not want to be involved in making decisions at all. Every person and relationship is different. Use your own judgement and rely on the trust between you and the person you are caring for.

If you are able to talk about the options in advance, it can help if you ever need to make decisions on their behalf. Making notes when you have these conversations can help to remind everyone what was said. This can reduce the chances of misunderstandings later.

It can also help to have an open and honest discussion with the professionals involved. It is important that you know what the procedures involve and how they will affect the person you are caring for. It can be helpful to speak to their doctor to get expert medical information and advice.

If a hospice is involved in caring for the person, the staff may able to support you and offer advice. Hospices offer a range of services. They can often provide services in your home and don’t only help people at the end of life.

When decisions have to be made, talk to all of the family and friends involved to make sure you agree. The professionals can be a source of support as well.

If you find it difficult to start these conversations, you may find our information about talking with someone who has cancer helpful. It looks at some of the difficulties people may have when talking about cancer and suggests ways of overcoming them.


Mental capacity

Laws are in place to protect people who are unable to make decisions for themselves. This means that a person can plan ahead for when they may not be able to make decisions on their own. This includes decisions about financial matters and their health and social care.

This means that there is guidance in place for carers to make decisions on behalf of the person they care for.

The laws about mental capacity are the:

  • Mental Capacity Act 2005 in England and Wales
  • Adults with Incapacity (Scotland) Act 2000
  • Mental Capacity Act (Northern Ireland) 2016.


Mental capacity and advocacy

In some cases, local authorities can arrange for an Independent Mental Capacity Advocate to be involved in making decisions. This is a person who is trained to represent someone’s best interest when they are unable to.

An Independent Mental Capacity Advocate cannot make decisions. They are usually only involved in discussions when someone has no family or friends to represent them. But there are some other situations where they can become involved, for example if a family member lives far away or is not confident about representing the person. You can find out more from your local authority, or by asking a social worker or your GP.


Support with planning ahead and making decisions

You can contact us to talk about any planning ahead or making decisions.

You can also contact the:

  • Office of the Public Guardian in England and Wales. It has information about making decisions on behalf of people, or for people would like to plan their future. Call 0300 456 0300 or visit justice.gov.uk/about/opg
  • Office of the Public Guardian in Scotland. Call 01324 678 300 or visit www.publicguardian-scotland.gov.uk
  • Office of Care and Protection in Northern Ireland. Call 028 9072 5953 or visit nidi-rect.gov.uk