Planning ahead

Planning ahead can help you get the care you would like at a time when you may not be able to make decisions about your care yourself. Writing down your wishes and plans means your family, friends and healthcare team will know what is important to you. It can also help you feel more in control of your future care. You can plan ahead, whether you have a serious illness or not. 

There are different ways you can make plans in advance. These include:

  • making a will
  • writing down or telling people your wishes for your care
  • creating an Advance Decision to Refuse Treatment (ADRT)
  • creating an Enduring Power of Attorney (EPA)
  • writing down your wishes about organ and tissue donation
  • funeral planning.

Planning ahead can be difficult especially as you may already be struggling to cope with fears and uncertainties about the future. Remember that there are many professionals who can help you, as well as your family and friends.

You can also speak to our cancer support specialists on 0808 808 00 00.

Why plan ahead?

Many people think they do not need to make decisions about their future care unless they reach a time when they have a serious illness. This might include an advanced cancer, heart failure, chronic obstructive pulmonary disease (COPD) or motor neurone disease (MND).

However, planning ahead is important, whether you have an illness or not. This is because none of us can say for sure whether we will always be able to make our own decisions about our care. For example, you may suddenly become very ill. This may mean you are unable to make decisions about your healthcare or finances.

It is also important because it is not always possible for health or social care professionals to know exactly how you would like to be cared for in certain situations. For example, if you became unwell and were unable to talk to them.

Remember that you are the expert on you. Only you know how and where you would like to be cared for. Even your closest family and friends may not know exactly how and where you would wish to be cared for, if you have not told them in advance. This might mean you are not cared for in the place or way you would have chosen.

For example, if you had an illness that could not be cured and your condition suddenly got worse, you may want to be cared for at home. If your family or health or social care team did not know this, and you are too ill to tell them, you may be admitted to hospital.

Knowing your wishes can make it easier for your family to make decisions on your behalf at what can be a distressing time. If you plan your care in advance, there is more chance that your care will be right for you. Planning ahead can also help you to feel more in control of your life. You will still be able to alter your plans if you change your mind later on.


Ways you can plan ahead

There are several ways you can make plans in advance. We have listed these below, but you do not have to use them all. Many people find it helpful to start with the ones that are most relevant to them.

A will

Making a will is the best way to make sure that your wishes are carried out after you die. It can make sure your family and friends are provided for in the way you want. A will includes who you would like your property, personal things and money to go to after you die. It may also include who you would like to look after anyone dependent on you (your dependants) and any specific funeral arrangements you want.

Your wishes for your care

You can tell people your wishes or write them down. These will be specific wishes about how you would like to be cared for if you ever become unwell. They can include your choice about where you would like to be cared for. This may be at home, or in a hospital, care home or hospice.

If you are ready to plan your wishes, it is important to tell your GP or healthcare professional. They can record them, so that any health and social care professionals involved in your care know what your wishes are.

Advance Decisions to Refuse Treatment

You can write down your wishes about any treatment you do not want to have, in case you are not able to tell your doctors or family later. This is called an Advance Decision to Refuse Treatment or ADRT. An ADRT is legally binding.

Enduring Power of Attorney

To create an Enduring Power of Attorney (EPA), you put the name of someone you trust to make decisions on your behalf in writing. These decisions might be about managing your property and financial affairs. If you become unable to make decisions because you lack mental capacity, the person you name can make them on your behalf.

An Enduring Power of Attorney is a legal document and needs to be registered.

Organ and tissue donation

You may choose to write down your wishes about organ and tissue donation. You might also want to donate your body for medical research or teaching.

Funeral planning

You may wish to be involved in planning your funeral. This can be helpful if you know how you would like your funeral to be carried out. It is also possible to pay for your funeral in advance.


Who can help you with planning ahead?

Planning ahead for our healthcare is not something we usually think about. If we are well, we do not expect to become seriously ill. We may assume that we will always be able to make decisions for ourselves, even when we are unwell. But this is not always the case.

For many people with an illness, especially a long-term illness, planning ahead may be difficult. You may already be struggling to cope with fears and uncertainties about the future. It is important that you do not feel alone when planning ahead. There are healthcare and other professionals who can help you, as well as your family and friends.

Professionals

If you want to start planning ahead, you can ask your:

  • GP
  • district nurse
  • specialist nurse
  • social worker
  • hospital doctor.

They will be able to tell you who the best person to speak to is. If you are thinking about making a will or creating an Enduring Power of Attorney, you can contact a solicitor to help you.

It is fine to talk about your plans with one of these professionals. But starting a conversation may feel difficult. You could start with something like this:

‘I’ve been thinking about making plans for my future care, just in case something happens to me and I can’t make decisions for myself. I wonder whether you could help me. Or could you point me in the direction of someone who could help me explore what options I have and what I need to do?’

Family and friends

Involving people who are close to you, such as your family and friends, can be really helpful. They may be able to help you think through some of the issues so that you can plan ahead better. It will also help them to know what your wishes are so they can help make sure they are carried out.

If your plans involve your family or friends taking on more responsibility for your care, it is important to discuss this with them. For example, you may want to die at home and need them to look after you. You can ask them whether they think this extra responsibility will be too much for them. If it is, you can ask your health and social care team for advice. They can tell you more about the support that might be available to help your family and friends. They can also give advice about other care options.

If they do not want to talk about it

Sometimes family and friends do not want to talk about planning ahead. They may appear to ignore the fact that you want to think about the future, perhaps by playing down your worries and changing the subject. If this upsets or hurts you, try telling them why it is important for you to plan ahead. You could explain that knowing you have planned the sort of care you want will help you feel less worried.

You could also ask them to read this information, so that you can talk about it together when you feel ready. Perhaps start by reassuring them that this is something you want to do and it will help if you could talk to them about it. You could try saying something like this:

‘I know it’s difficult to talk about this, but I’d really like to talk about how I want to be cared for if my health was to suddenly get worse.’


Coping with your emotions

Planning ahead can make you feel all sorts of emotions, particularly if you are already coping with an illness. You may feel sad, angry, anxious and scared. These are normal reactions that people often have when coping with uncertainty about their future. Even if you are well, thinking about how you would like to be cared for if you were to become seriously ill can cause lots of different feelings.

There are many people who can help you cope with your emotions. Talking to close family or friends can help. Health and social care professionals can also give you support. This could be your GP, social worker, specialist nurse or hospital doctor. You may also find it helpful to join a support group or talk things through with a support organisation.

Some people may be offered counselling. This can be very helpful, particularly if you do not feel like talking about your feelings with people close to you.

Planning ahead can be hard. But it may help give you a feeling of control over your life and your future.

Our cancer support specialists are here for you if you have questions, need support or just want a chat. Call our support line for free on 0808 808 00 00, Monday to Friday, 9am to 8pm.


How to plan ahead

You can plan ahead in simple steps. You do not need to follow all these steps in order.

Do what feels right for you and take your time.

Write your plans down

You may want to use the Record of my wishes and My Advance Decision to Refuse Treatment documents.

Tell your GP or a health and social care professional what your wishes are

They can record this on an Advance Care Planning Summary. This can be seen by other health and social care professionals involved in your care.

Make a will or create an Enduring Power of Attorney

If you want to make a will or an Enduring Power of Attorney, it is a good idea to speak to a solicitor, because these are important legal documents. A solicitor can also help you to write an Advance Decision to Refuse Treatment.

Keep your documents safe

Make sure they can easily be found by your family, friends and health and social care professionals. Your family should know where they are kept.

Review your documents regularly

This is to make sure they still reflect your wishes. Your wishes can vary over time, especially if your circumstances change. For example, your health may get worse. You may wish to review your documents with your health and social care professionals. It is important to include the people close to you too.

You can change the plans you have made at any time

This includes your will, a record of your wishes, Advance Decision to Refuse Treatment, Advance Care Planning Summary or your wishes for organ and tissue donation. If you do change any of your plans, you need to make sure that everyone involved in your care knows. You should also write down (document) your new wishes, even if this is not a legal requirement for the plan you want to change. Writing down your wishes officially and sharing them makes sure that everyone who is involved in your care knows what they are.

You may find it helpful to use the planning ahead checklist. You can use it to keep a record of the ways you have planned ahead, important contacts and where you keep different documents.

Make sure someone close to you knows where you keep this checklist.

Back to Advance care planning in Northern Ireland

Making a will

Having an up-to-date will ensures that your wishes for who you would like to leave your estate to are guaranteed.

Your wishes for your care

When planning ahead, it is important to think about how and where you would like to be cared for.

Enduring Power of Attorney

An Enduring Power of Attorney (EPA) allows you to choose other people to make decisions on your behalf.

Funeral planning

Planning your funeral in advance means your family and friends can arrange the type of funeral you would like.