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 or telling people your wishes for your care
  • creating a Power of Attorney (PoA)
  • creating an Advance Directive
  • writing down your wishes about organ and tissue donation
  • funeral planning.

Your health and social care professionals may record some of this information on a Key Information Summary (KIS). This makes sure different professionals involved in your care can learn of your wishes even when your GP surgery is closed.

You can also speak to our cancer support specialists on 0808 808 00 00 if you need help.

Why plan ahead?

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

However, planning ahead is important, whether you have a serious 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 and be offered treatments that you may not want to have.

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.

My husband made sure there was something in his notes for all care providers. It said that they could share information with me and I had no problems organising things.

Lynda


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

A will is the only 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 to have your property, personal things and money after you die. It may also include who you would like to look after anyone dependent on you (your dependants), such as a child or an elderly relative.

Making a will means you can make the best arrangements possible. It is easier to do this when you are feeling well. In your will you can include any funeral arrangements you want.

Your wishes for your care

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

Power of Attorney

Creating a Power of Attorney (PoA) means putting in writing the name of someone you trust to make decisions on your behalf. There are three types of PoA:

  • Financial PoA – This gives powers to deal with your money and property.
  • Welfare PoA – This gives powers to make decisions about your personal welfare or health care and treatment.
  • Combined PoA – This gives finance and welfare powers.

A PoA is a legal document and needs to be registered with the Office of the Public Guardian. A Welfare PoA can only be used if you become unable to make decisions yourself. A Financial PoA can be used when you are still able to make your own decisions but are not able to manage your money and other financial or practical affairs.

Advance Directives

You can also write down your decisions about any treatments you do not want to have in the future, in case you are not able to tell your doctors or family at the time. These are known as Advance Directives.

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 think 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 cancer or other illnesses, planning ahead may feel difficult. You may already be struggling to cope with fears and uncertainties about the future. It is important 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 talk to your:

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

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 a Power of Attorney, you can contact a solicitor. Some people may be able to get some help towards legal fees, depending on their circumstances. A solicitor can advise you on this.

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 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.

Your plans may involve your family or friends taking on more responsibility for your care or making decisions for you. It is important to discuss this with them. For example, you may wish to die at home. You can talk with your family and friends about whether they think they will be able to help look after you and what worries they might have about looking after you.

You can also talk to the health and social care professionals looking after you. They can tell you more about the support that might be available to help you and your family or friends and 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. They may play down your anxieties or change the subject. If this upsets or hurts you, try explaining why it is important for you to plan ahead.

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 would 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 through how I would like to be cared for if I became very unwell.’

Our GP helped us make a treatment plan. It was a very difficult subject but it was made so much easier having a professional involved.

Denise


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 be feeling sad, 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, nurse specialist, social worker or hospital doctor. You may also find it helpful to join a support group or talk things through with a support organisation.

If you feel you need more support, you can ask your GP, nurse specialist or hospital doctor about finding a counsellor. Counsellors 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.

Planning ahead gave us complete honesty in our communication. We said things that needed to be said because we knew there would come a time when we couldn’t say them.

Jane


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.


Find out about the different ways you can plan ahead

Our information at the beginning of this section mentions the different ways you can plan ahead. You may find it helpful to contact another organisation, such as Good Life, Good Death, Good Grief or the Law Society of Scotland, for more information and support on ways to plan ahead. Our database lists other useful organisations that may be able to help. It is your decision whether you choose to use just one way or many ways to plan ahead.

Talk to your family and friends

They will be able to help you decide on your plans. It may also help them feel involved.

Talk to a health or social care professional

It may take some time to discuss your plans and talk everything through. The professionals helping you will not expect you to rush into making any plans unless you are sure about them. It may take months before you feel happy to make plans for your future care or treatment.

Write your plans down

Ask your health or social care professionals if they have a specific document for writing down your wishes for your care or making an Advance Directive. These are also known as Living Wills.

Key Information Summary

Your health and social care professionals may record some of this information on a Key Information Summary (KIS). This document makes sure that key information about your wishes is available to the different professionals involved in your care when your GP surgery is closed. This includes out-of-hours GPs or paramedics. Your health and social care team can tell you more about the KIS document.

Keep your documents safe

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

Review your documents regularly

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

You can change the plans you have made at any time

If you do change any of your plans, you need to make sure that everyone involved in your care knows. This includes your GP and other health professionals. You should 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 and sharing them makes sure that everyone who is involved in your care knows what they are. Updating your KIS document will ensure this happens.

If you want to make a will or create a Power of Attorney, it is important to see a solicitor, as these are important legal documents. You can also talk to a solicitor about making an Advance Directive.

You may find it helpful to use our planning ahead checklist. You can use it to keep a record of:

  • the ways you have planned ahead
  • important contacts
  • where you keep certain documents.

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

Back to Advance care planning in Scotland

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

Power of Attorney

A Power of Attorney (PoA) allows you to choose someone to make decisions on your behalf.

Advance Directives

An Advance Directive is a written statement of your wishes to refuse certain treatments in the future.

Funeral planning

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

Mental capacity

The Adults with Incapacity (Scotland) Act 2000 aims to protect people who cannot make a decision for themselves.