Advance Statements and Advance Decisions to Refuse Treatment – Patient Information Leaflet

An advance statement and an advance decision to refuse treatment are documents you can complete when you are well and have the
capacity to express your wishes and feelings about the kind of care and treatment you would want to receive should you become unwell and lose your capacity to make those decisions.

Advance statements and advance decisions to refuse treatment are part of the Mental Capacity Act 2005. Capacity, in the Mental Capacity Act 2005, means the ability to make a decision about something.

Advance statements are an opportunity to express wishes and preferences. They are not legally binding.

Advance decisions to refuse treatment are about refusing a specific treatment you don’t wish to receive, should you become unwell. They are legally binding, if they are valid and apply to the circumstances.

What is an advance statement?
An advance statement is about your views, wishes and preferences in relation to your care and treatment. An advance statement is something that you complete when you are well and have the capacity to make decisions about your care and treatment should you become unwell and lose the capacity to make those decisions. It is a way of telling people what you would like to happen if you were to lose your capacity to make decisions for yourself.

Who can make an advance statement?
Anyone over the age of 16 who has the capacity to make decisions about their care and treatment.

How do I make an advance statement?
An advance statement is a document that you write yourself, with support from your care coordinator or another person if you need it. The Trust has a form you can use, ask staff for a copy. There are also several organisations that offer information, advice, and templates. Some examples are listed at the end of this leaflet.

What types of things could be in an advance statement?
The advance statement will set out your wishes about what you would like to happen if you become unwell.

An advance statement can cover issues such as

• Who people should contact if you become unwell.
• Your wishes regarding preferred medication.
• What treatment has worked well for you in the past and what has not been so helpful.
• Any special needs that you may have with regard to diet, health, religion, disability, etc.
• Arrangements that you wish to make for your children/dependants, or family pets.
• How you would like to make your home secure, and who should be responsible for this.

Is the document legally binding?
An advance statement sets out your wishes and preferences and professionals should take these into account, but it is not legally binding.

What happens to the document when it is completed?
When you have written your advance statement, give a copy of it to your care coordinator/lead professional. You should also give a copy to other professionals involved in your care e.g. Consultant, Community Psychiatric Nurse, Social Worker and GP (family doctor).

It is also a good idea to give copies of the document, or at least the appropriate sections of it, to any of the people that you have named as being responsible for caring for dependants, pets, or who you have asked to look after the security of your home.

Do I need to discuss the content of my advance statement document with family and friends?
If you have identified a member of your family or friend as being responsible for childcare, care of pets, home security, etc., it is advisable that you discuss this with them prior to seeking their agreement.

Can I request certain medication and treatments?
You can express a preference or make a request, and the professionals should take this into account, but it might not always be possible to give you the exact treatment or medication you would prefer.

If I require inpatient treatment can I request being admitted to a particular ward, or access to a particular service?
You can express a preference towards an individual ward, department or hospital, but it might not be possible for staff to follow your wishes as this depends on what is available at the time

What is an advance decision to refuse treatment?
An advance decision to refuse treatment is about refusing a specific medical treatment. It can’t be used to ask for a specific treatment. You should clearly specify:
– the treatment you are refusing
– why you are refusing it
– and under what circumstances you would wish to refuse the treatment.

Who can make an advance decision to refuse treatment?
Anyone over the age of 18 who has the capacity to decide what treatment they would not want to receive if they became unwell.

What type of things could be in an advance decision to refuse treatment?
Your advance decision should specify the treatment you are refusing. If this is medication you should name the specific medication you don’t want. The document should give the reasons behind your decision, for example, if it is because of specific side effects. It should also explain the circumstances in which your refusal applies. If your refusal relates to life sustaining treatment then you need to include in the document that the decision to refuse treatment applies even if your life is at risk. If you are refusing life sustaining treatment, the document would also need to be dated, signed and witnessed.

Is an advance decision to refuse treatment legally binding?
An advance decision to refuse treatment must be followed by healthcare staff as long as it is valid and applies to your situation. To be valid, it must show that you understood the consequences and had the mental capacity to make the decision at the time. This is why it helps to explain your reasons for refusing certain treatments.

An advance decision to refuse treatment does not need to be written down but it is easier to establish what you are refusing and in what circumstances you want to refuse it if it is written down. If your refusal is for life sustaining treatment then it must be written down, dated, signed and witnessed.

An advance decision to refuse treatment can be overridden by the Mental Health Act 1983 but only in relation to treatment for your mental illness.

Advance decisions to refuse treatment and electroconvulsive therapy (ECT)
ECT is subject to special safeguards of the Mental Health Act 1983. A valid and applicable advance decision covering the use of ECT means that ECT cannot be given. However, ECT can still be used in emergencies where it is necessary to save the patient’s life or it is necessary in order to prevent a serious deterioration.

How do I make an advance decision to refuse treatment?
An advance decision can be made verbally but it is difficult for professionals involved in your care to follow it if it is not written down. There are various organisations out there that have information, advice and templates available. Some examples are listed at the end of this leaflet.

Who should I discuss the content of my advance decision to refuse treatment with?
If you are thinking about making an advance decision to refuse treatment it is recommended that you get advice from the health care professional most closely involved with your current treatment, or an organisation that can provide advice in relation to your specific condition and the treatment you wish to refuse. This will help you to ensure you have all the information you need to make an informed decision.

You may want to get legal advice to make sure you express your decision clearly and accurately.

What happens to the document when it is completed?
When you have written your advance decision, give a copy of it to your care coordinator or lead professional and any other professional involved in your care e.g. Consultant, Community Psychiatric Nurse, Social Worker, GP (family doctor).

Can I change or withdraw my advance decision to refuse treatment or advance statement?
Yes – you can change either document at any time, but please ensure that the professionals involved in your care and anyone else who has a copy of the document have a copy of the most up to date version.

There are external organisations you can access for template forms.

Alzheimer’s Society
Advance Decision to Refuse Treatment template
www.alzheimers.org.uk/get-support/legal-financial/ download-free-template-advance-decision-form

Compassion in Dying
Advance Decision to Refuse and Advance Treatment
and Advance Statements template
https://compassionindying.org.uk/how-we-can-help/ living-will-advance-decision/

Deciding Right
Information about advance planning
https://northerncanceralliance.nhs.uk/deciding-right/

An advocate
An advocate is someone who supports you and helps to get your wishes and feelings heard. Part of their role is also to make sure that your rights are protected. You may be able to have an advocate, please ask a member of staff for details of the advocacy services available.

Patient Advice and Liaison Service (PALS)
See contact at the end of this leaflet.

If you want to make a comment, suggestion, compliment or complaint you can:
• talk to the people directly involved in your care
• ask a member of staff for a feedback form, or complete a form on the Trust website www.cntw.nhs.uk/contact/complaints/ 
• telephone the Complaints Department 0191 245 6672
• email [email protected]

We are always looking at ways to improve services. Your feedback allows us to monitor the quality of our services and act upon issues that you bring to our attention.

You can provide feedback in the following ways:
– the quickest way for you to do this is to complete our short online survey at www.cntw.nhs.uk/yourvoice
– complete a Your Voice survey, available on wards, reception areas or from staff.
– other options for sharing your feedback and experience
www.cntw.nhs.uk/yourfeedback

Patient Advice and Liaison Service (PALS)
PALS provide confidential advice and support, helping you to sort out any concerns that you may have about any aspect of your or your loved ones care.

We act independently when handling patient and family concerns, liaising with staff, managers and, where appropriate, relevant organisations, to negotiate prompt solutions. If necessary, we can also refer patients and families to specific local or national-based support agencies.

PALS (for North of Tyne and North Cumbria)
Tel: 0800 032 0202
Email: [email protected]
Post: FREEPOST PALS

South of Tyne (for Gateshead, Sunderland, South Tyneside and Lotus Ward)
Tel: 0800 328 4397
Text: 07825 061 035
Email: [email protected]
Post: Patient Advice and Liaison Service, Garden Lodge, Hopewood Park, Ryhope, Sunderland, SR2 0NB

9.00 am – 4.30 pm, Monday to Friday
An answerphone is available at all times for you to leave a message. A member of the PALS team will aim to return your call as soon as possible.

Further information about the content, reference sources or production of this leaflet can be obtained from the Patient Information Centre. If you would like to tell us what you think about this leaflet please get in touch.

This information can be made available in a range of formats on request (eg Braille, audio, larger print, easy read, BSL or other languages). Please contact the Patient Information Centre Tel: 0191 246 7288

Published by the Patient Information Centre
2025 Copyright, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

Ref, PIC/343/1225 December 2025 V10

www.cntw.nhs.uk

Tel: 0191 246 7288

Review date 2028