Advance care planning: helping to plan your future care

This page aims to help you, your family or carers to plan ahead and talk about decisions about your care or treatment that may need to be made in the future. You may be reading it because you or someone you care about has been diagnosed with a serious condition. Or because you have been thinking about what happens if you become unwell in the future.

If you have any questions about advance care planning or information in this leaflet, please speak to the team looking after you. You can also contact the Transforming End of Life Care team (contact details are below). You might find it helpful to read this page with someone you know.

What does ‘advance care planning’ mean?

Advance care planning involves thinking about, discussing, and recording your preferences for your future care and treatment. It encourages you to have honest conversations with your family, friends and carers about what matters most to you.

This means that, if you are unable to make a decision for yourself for any reason, the people caring for you are aware of and can respect your wishes. This includes when you are so unwell that you are unconscious, and so unwell that you are dying.

What are the benefits of planning ahead?

Serious illness can bring challenges that many of us prefer to avoid thinking about. At the same time, many of us fear loss of control about decisions relating to our health and care. We know that planning ahead can be daunting. But if no one knows what matters to you, 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.

Having these conversations can also help your loved ones to feel involved. They may feel reassured that they know your wishes if they ever needed to help your healthcare team decide about your care.

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

What should I think about?

You are the most important person in this process. Planning your future care will help those involved understand what matters most to you and what in your life gives you meaning.

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 have involved in discussions and decisions about your care. There may be people in your life that you do (or don’t) want to be around.
• Where you would like to receive care and why. Is there something particular about home or a caring environment that is important?
• Your wishes about organ donation and whether you’d like to record them in your advance care plan.
• Things that seem small, like how you take your tea or the music you listen to.

Documents to consider

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

Advance Statement of My Wishes

This is an informal statement of what you would like to happen. It is not legally binding but must be taken into account when decisions are made on your behalf.

Universal Care Plan (UCP)

This is a digital care plan that includes a record of your wishes. This service is currently only available within Greater London. Healthcare professionals looking after you at home, in hospital or in the community will be able to access it. Your team will ask for your consent to create this.

Will

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

Lasting Power of Attorney This is a legally binding document in which you appoint a person to make decisions on your behalf when you are not able.

Advance Decision to Refuse Treatment

This is a document recording treatments you do not wish to receive. In specified circumstances, it can be legally binding. If you do not wish to be resuscitated in the event of cardiopulmonary arrest (when the heart and breathing stop), you can state this here.

Who should I talk to about planning ahead?

If you would like to know more about advance 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. This will help you to plan ahead.

Thinking about conversations relating to your future care 

• Who would you consider your ‘next of kin’ (the person you would wish to be contacted first in an emergency)?
• Who would you like to be involved in conversations about your care?
• Is there anyone you would not want to be involved?
• Are there conversations you can have now with your loved ones that might help them understand your wishes for your future care?

Where can I get more information?

The NHS in England has published guidance on advance care planning which is available on their website: nhs.uk/conditions/end-of-life-care/planning-ahead/

Ask a member of staff to help you access the website. Or, scan the QR code using your smartphone. 

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

Scan the QR code to access them, or ask a member of staff to help you to visit the website.

For more information on Lasting Power of Attorney, visit: gov.uk/power-of-attorney For more information on making a will, visit:

• gov.uk/make-will
• citizensadvice.org.uk/family/death-and-wills/wills

For more information about Universal Care Plan (UCP), visit: ucp.onelondon.online/patients

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

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