Advance Care Planning: supporting you to plan ahead when undergoing CAR T-cell therapy

Planning early:

• Allows you to make informed decisions in your own time. We can talk to you about the options available to you, giving you enough time to carefully consider them. You also have a chance to talk through your thoughts and preferences with people who are important to you before recording your decisions. 

"Don’t rush, it’s a process."

• Allows you to have these conversations while you’re in the right physical and emotional state.
• Gives you control over your future care and treatment. Planning ahead and recording your wishes can help to reassure you that the people caring for you will be aware of your preferences and take them into consideration. 

"It felt empowering, like I had taken control...so my family do not have to make difficult decisions."

• Can be helpful for the people closest to you. Having these conversations can 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. Planning ahead would also remove the burden of decision making from them.
• Gives you peace of mind that you have prepared for the future, allowing you to focus on your current treatment.

"Now that I have things organised, I can get on with living life – knowing people will know my wishes when it counts."

There are different ways to express your wishes and plan for your future care and treatment. This section provides an overview of each of them. Also below is a list of resources that offer more information about each aspect of advance care planning.

Advance Statement of your wishes and preferences

This involves recording your wishes and priorities if treatment options for your cancer are limited and you become too unwell to discuss your care or to make decisions for yourself. Your Advance Statement can include anything that is important to you.

For example:

•     Things that are important in your life, such as activities you enjoy, people you like to spend time with, places you like to visit.

•     Lifestyle preferences, such as whether you prefer showers or baths, or food and meal time preferences.

•     Religious or spiritual beliefs you hold that may affect your care or treatment.

•     Who you would like to be consulted about decisions relating to your care or treatment. This can be relatives, close friends, or anyone else you want to be involved.

•     Where you would like to be cared for if you were unable to care for yourself or were nearing the end of life.

Please note that an Advance Statement is not a legally binding document. This means that your healthcare professionals would not legally have to follow your wishes if you were unable to make decisions for yourself. But they would have to take them into account when making decisions in your best interest. It is free to make an Advance Statement and you do not need a solicitor. You can also cancel or make changes to your Advance Statement at any time.

Appointing a Lasting Power of Attorney

This involves giving someone the legal power to make decisions on your behalf if you were ever unable to do so yourself. There are two types of Lasting Power of Attorney:

1. Health and Welfare – this covers decisions about your care and treatment, including where you are cared for, and the type of care or treatment you receive. As long as the decisions are made in your best interest, they cannot be overruled by anyone.

2. Property and Financial Affairs – this covers decisions about money and property.

You can choose to make one or both types but they must be registered separately.

You can appoint a Lasting Power of Attorney to anyone you trust to understand and respect your wishes. This can be a relative, close friend or a solicitor. You can cancel or appoint a different Lasting Power of Attorney at any time. There is a fee to register a Lasting Power of Attorney. You don’t need a solicitor.

Advance Directive or Advance Decision to Refuse Treatment (also known as Living Will)

Please note that the aim of CAR T-cell therapy is remission and so this section is not relevant to you at this time. We have included an overview of the Advance Directive in case you come across it in other sources and wish to consider it in the future.

Some people may no longer wish to receive certain medical treatments or procedures if there are no more treatment options available for their cancer. The treatments or procedures that they would not want to receive can be recorded in an Advance Directive, also known as a Living Will. If they choose to refuse a potentially life-sustaining treatment, such as transfer to Intensive Care, they would need to specify the circumstances in which this would apply. This would have to be written, signed and witnessed. If they then lost the ability to make decisions for themselves and their circumstances were as documented in their Advance Directive, their decision to refuse the treatment would be legally binding and could not be overruled by anyone.  

Sorting out your affairs

You may want to put your affairs in order. Things you may want to consider include:

• Making a will
• Planning your funeral
• Creating memory boxes/photo albums
• Your digital legacy (your social media accounts and what you would like to happen to them)
• Psychological support for your family
• Donating your body to medical research and teaching.

Summary of advance care planning

If, after reading this booklet, you would like to start planning for the future, you can follow the steps below:

• Start to think about what is important to you. What would your preferences be if time was short and you were unable to make decisions for yourself? You can record your ideas on a print-out of this page if you wish.
• Talk to your family and/or close friends about your wishes. It can help to talk through things with someone else. It can also help those close to you to feel involved and able to support you.
• Talk to healthcare professionals, such as your CNS, haematology doctor or GP, about your wishes for future care and treatment. They can explain all the options available to you so that you can decide what is right for you. They can also refer you to the palliative care team who help to improve the quality of life of patients, their families and carers. The palliative care team can also support you through this process.
• Record your wishes and preferences.
• Tell the people who may be involved in your future care about your wishes. This includes:
  • CAR T-cell team at UCLH
  • haematology team at your local hospital
  • your GP
  • family, carers and/or close friends.

You could also give them a copy of the documents.

"Telling our loved ones our wishes helps them have the confidence and comfort to know they’re doing what we want them to do."

• Although thinking and talking about a time when cancer treatment options are limited can be daunting, many people feel relieved that they have been able to take control and plan ahead. This has allowed them to focus on making the most of the time they have.

"Do it before it is too late. Not doing it could mean your wishes aren’t respected – that’s far worse than discussing a sensitive subject in your own time."

• Include anything that is important to you in your Advance Statement, no matter how trivial it may seem to others.    
• Keep the copies of your Advance Statement and/or Lasting Power of Attorney safe. Give copies to those who may be involved in your future care, such as doctors, nurses, relatives or close friends.   
• While you are still able to make and communicate decisions for yourself, you can cancel or make changes to your Advance Statement or Lasting Power of Attorney at any time.
• Your Advance Statement or Lasting of Power Attorney will only be used if you lose the ability to make decisions for yourself.

"My doctor said he wished more people planned in advance. Life is simpler if doctors know what you want."

Planning your care in advance

UCLH resource which provides more information about planning ahead.

Website: uclh.nhs.uk/planningyourcareadvance

Compassion in Dying

Free information and resources on how to plan ahead. Useful resources include: ‘Planning ahead: my treatment and care’ and ‘Starting the conversation: planning ahead for your treatment and care’.

Website: compassionindying.org.uk/library

Tel: 0800 999 2434

Email: info@compassionindying.org.uk

Hospice UK

Free information and resources, including the Planning Ahead tool, as part of their Dying Matters campaign.

Website: hospiceuk.org/our-campaigns/dying-matters

Universal Care Plan (UCP)

Website where people can record their wishes for future care and treatment. If they are then unable to make decisions for themselves, healthcare professionals involved in their care can access the plans directly. This service is currently only available to patients in London and Greater London, but there are similar electronic health record systems used in other areas/cities. Please ask your CNS, haematology doctor, palliative care nurse, or GP for more information.

Website: ucp.onelondon.online/patients Information about registering

Lasting Powers of Attorney

Government website: gov.uk/power-of-attorney

Office of the Public Guardian website: gov.uk/government/organisations/office-of-the-public-guardian

Tel: 0300 456 0300

Information about making a will

Government website: gov.uk/make-will

Citizens Advice Bureau website: citizensadvice.org.uk/family/death-and-wills/wills

Macmillan Cancer Support

Free information and resources about planning ahead, making a memory box and funeral planning, among others.

Website: macmillan.org.uk

Tel: 0808 808 00 00

Digital Legacy Association

Professional body for digital assets planning and digital legacy safeguarding.

Website: digitallegacyassociation.org

Grief Encounter

Charity providing bereavement support for children and young people.

Website: griefencounter.org.uk

Tel: 0808 802 0111

Winston’s Wish

Charity providing bereavement support for children and young people.

Website: winstonswish.org

Tel: 0808 802 0021

Ruth Strauss Foundation

Charity which provides emotional and practical support to help families prepare for the death of a parent.

Website: ruthstraussfoundation.com

Cruse Bereavement Care

Charity which provides bereavement support to anyone who is bereaved.  

Website: www.cruse.org.uk        

Tel: 0808 808 1677

Teenage Cancer Trust

Charity which provides support for teenagers and young people with cancer.

Website: teenagecancertrust.org        

Tel: 020 7612 0370

Blood Cancer UK

Charity which provides information and support to people affected by blood cancers and their families.

Website: bloodcancer.org.uk      

Tel: 0808 169 5155

London Anatomy Office

Information about donating your body to a medical school.

Website: kcl.ac.uk/research/london-anatomy-office

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

f you have any questions about advance care planning, or need support to plan ahead, please contact:

• CAR T-cell CNS team on 020 3447 7359 or uclh.cartcns@nhs.net
• CAR T-cell trials team on 020 3447 2528 or uclh.car-ttrials@nhs.net

If printing out this page, please use the space below, if you wish:

My CNS: ………………………………………………………..........

Tel: ……………………………………………………………...........

My haematology doctor: ……………………………………….....

Tel: ……………………………………………………………...........

My palliative care nurse: ……………………………………….....

Tel: ………………………………………………………………........

Macmillan Support and Information Service

The Macmillan Support and Information Service, located on the ground floor of the Cancer Centre, offers advice, support and information to anyone affected by cancer or a blood condition. You can drop in any time between 9am and 4.45pm, Monday to Friday, or call 020 3447 8663. For more information about the service and what it offers, visit uclh.nhs.uk/msis

You can print out this page to make notes about what is important to you. Remember that this is not a legally binding document.

Things that are important to you, such as activities you enjoy, people you like to spend time with, places you like to visit:

Lifestyle preferences, such as daily routine and timings, showers or baths, food preferences, clothes preferences, sleeping arrangements:

Religious or spiritual beliefs and how these may affect care or treatment:

Important people, such as your next of kin, who you would like to be consulted when making decisions about your care or treatment, anyone you specifically do not want to be consulted, whether to appoint a Lasting Power of Attorney:

Place and type of care, for example where you would like to be cared for if you were unable to care for yourself, where you would like to be cared for if you were nearing the end of life (options include home, care home, hospice or hospital):     

Concerns or fears about future care or treatment, for example any situation or outcome that would not be acceptable to you:

We would like to thank Compassion in Dying for the quotes we have used in this booklet. The quotes are from people who completed an online survey sent out by Compassion in Dying after using their information line.

You can use the space below to make your own notes if you are printing out this page.