Planning your Future Care

Future care planning involves thinking about, discussing, and recording your preferences for your future care and treatment. You may hear this referred to as ‘Personalised Care and Support Planning’ or ‘Advance Care Planning’. It gives you the chance to have honest conversations with your family, friends, carers and healthcare team, about what matters most to you.

This means that if, for any reason, you cannot make decisions for yourself in the future, everyone caring for you will be aware of your wishes and can respect them. This includes if you are so unwell that you are unconscious or dying.

Serious illness can bring challenges that many of us prefer to avoid thinking about. At the same time, many of us fear losing control over decisions about our health and care. Some people find it daunting to plan ahead, but your wishes and preferences may not be the same as someone else's.

If no one knows what matters to you, then your preferences and choices may not be taken into consideration. Discussing your wishes in advance and planning early gives you control over your future care and treatment. This includes a time you may be unable to speak for yourself. Many people find this helps them feel less worried about the future. If your wishes change, the plans can be updated. Having these conversations can help your loved ones to feel involved. If you are unable to express your wishes in the future, the healthcare team may ask them about your preferences. It can be reassuring for everyone if these discussions have already taken place.

Planning your future care helps everyone involved understand what matters the most to you and what in your life gives you meaning.

If your wishes change at any time, you can let your team know and they will update your records.

You are the most important person in this process. Asking yourself “what matters most to me?” can be a helpful starting point.

You can use the space at the back of this leaflet to write down some of your thoughts.

During these conversations, you may want to consider:

• What worries you about the future or might upset you if it is not addressed or respected.
• Any aspects of your culture, religion or life experience that influence how you feel about your future care.
• Who you would want to be involved in discussions and decisions about your care. There may be people in your life who you do (or do not) want to be part of these discussions.
• Who would you consider your ‘next of kin’ (the person you would wish to be contacted in an emergency)?
• Where would you like to be cared for and why. Is there something about the environment that is important, at home or elsewhere?
• Your wishes about organ donation and whether you’d like to record this in your future care plan.
• Things that seem small, like how you take your tea or the music you like.

If you would like to know more about future care planning, speak to your healthcare team or your GP. They will guide you in the next steps.

If you are receiving specialist treatment, you can talk to the team caring for you about your options. They will support you to reflect on how your choices may affect what matters most to you.

In addition to your healthcare team, you may find it helpful to talk to other people for support.

These people could include:

• Family, friends and carers
• Patient support groups e.g. Macmillan Cancer Support, Age UK
• Spiritual or faith advisers
• Independent advocacy services

Your healthcare team may ask your loved ones for guidance if you cannot speak for yourself.

Are there conversations you can have now with your loved ones that might help them understand your wishes for your future care?

You may wish to consider the documents listed below as part of your conversations.

Universal Care Plan (UCP)

This is a digital service which includes a record of your wishes and preferences for your care. This service is currently only available within Greater London. With your consent, a healthcare professional can create and update your Universal Care Plan. It will be visible to healthcare professionals across London who are involved in your care. This includes your GP, London Ambulance Service, NHS 111 and hospital teams. This helps make sure everyone involved in your care understands what matters to you and what you would want.

For more information visit:

Universal Care Plan for London

Advance Statement of Wishes

This is an informal written statement containing your wishes and preferences for future care. It can include anything that is important to you. It is not legally binding, but it must be taken into account if you are unable to make decisions for yourself in the future.

For more information visit:

NHS UK – Advance statement about your care wishes

Lasting Power of Attorney (LPA)

This is a legal document that lets you appoint one or more people (known as ‘attorneys’) to make decisions on your behalf if you are not able to.

There are 2 types:

• Health and Welfare – for decisions about your care and treatment.
• Property and Financial Affairs – for decisions about money, bills and property.

You can choose to make one type or both.

For more information visit:

GOV.UK – Make, register or end a lasting power of attorney

Advance Decision to Refuse Treatment (ADRT)

This is a written legal document to refuse a specific type of medical treatment. It is sometimes called a ‘living will’ or ‘advance directive’. It will only be used if you lose the ability to make decisions about your own treatment and the specific circumstances you wrote about happen. This could include decisions about resuscitation (CPR).

For more information visit:

NHS UK – Advance decision to refuse treatment (living will)

Will

This is a document stating what you want to happen to your money, property and possessions after your death. It can also include arrangements for your dependants, loved ones and pets.

For more information visit:

GOV.UK – Making a will

Treatment Escalation Plan (TEP)

A TEP is a document that records which treatments would and would not be offered if you became more unwell while in hospital. It is individual to your circumstances, and outlines treatments that your medical team believe would be helpful, and those that would not.

Your hospital team will make these decisions with your involvement. This will guide the team looking after you if you become more unwell, especially in an emergency.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

Cardiopulmonary resuscitation (CPR) is a medical treatment used when someone suddenly collapses because their heart and/or breathing have stopped (cardiac arrest). CPR sometimes, but not always, gives people the chance of recovery.

CPR may include:

• Repeatedly pushing down very firmly on the chest
• Electric shocks to try to restart the heart
• Insertion of a tube into the windpipe to help breathing, which may later be attached to a machine

All patients are given CPR unless their healthcare team believes that it is not going to work. When someone is approaching the end of their life or they have an advanced, irreversible illness, CPR would not help them live longer and can cause more harm.

DNACPR stands for 'Do Not Attempt Cardiopulmonary Resuscitation'. This decision means that if your heart or breathing stops your healthcare team will not try to restart it with CPR. A DNACPR decision would always be discussed with you, unless you are not able to, or it is an emergency. It is important to remember that a DNACPR decision only applies to CPR. It does not mean stopping or not offering other treatments.

For more information about Treatment Escalation Plans or DNACPR please see our dedicated leaflet. This can be found in the Patient Information section of our website.

If you have a serious illness, or you are approaching the end of your life, there may be some additional things you want to think about. This can feel overwhelming, and you may not feel ready to talk about this yet. These conversations can happen at your own pace.

Some things you may wish to consider include:

• If you became more unwell, how much treatment you would want. Would you prefer care that prioritises extending your life, or comfort, or a balance of both
• Any treatments you would not want, such as CPR if your heart or breathing were to stop
• Where you would like to be cared for in the final weeks or months of your life
• Whether you would want to go to hospital if you became more unwell
• Where you would prefer to be when you die (this could include at home, in a hospice, or in hospital)

Talking openly with those close to you and with your healthcare team can help make sure you are cared for in the way you would want.

The NHS in England has published guidance on future care planning which is available on their website: Planning ahead for end of life care

Ask a member of staff to help you access the website.

The NHS in Wales has also created some helpful videos and resources.
They are available on: advancecareplan.org.uk 

For more information about Universal Care Plan (UCP),see: Universal Care Plan for London​​​​​​

For more information about an advance statement of wishes visit: 
NHS UK – Advance statement about your care wishes

You can find more information about Advance Decisions to Refuse Treatment (ADRT) on the NHS website.

For more information on Lasting Power of Attorney, visit:
GOV.UK – Make, register or end a lasting power of attorney
Office of the Public Guardian
Email: customerservices@publicguardian.gov.uk
Telephone: 0300 456 0300

You can find more information on making a will, visit:
GOV.UK – Make a will
Citizens advice – Death and wills

For more information about organ donation, visit organdonation.nhs.uk

For more information about cardiopulmonary resuscitation and DNACPR please see our dedicated page in the Patient Information section of our website:
Transforming End of Life Care Team

You can also visit:
Do not attempt cardiopulmonary resuscitation (DNACPR) decisions

University College London Hospitals NHS Foundation Trust cannot accept responsibility for information provided by external organisations.

If you’d like to know more about future care planning, or if you need help to find information that is suited to your needs, please contact:

Transforming End of Life Care
Tel: 020 3447 7842
Email: uclh.transformingeolcteam@nhs.net

If you have been provided with a physical copy of this page, you can fill out the details below.

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