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How can I make an advance care plan or record my wishes about future treatment? 

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Updated
ByMy Patient Advice
Author: Harry Whitmore, Medical Student | Reviewed by: Dr. Stefan Petrov, MBBS

Living with heart failure means your health can change over time. Advance Care Planning is a way for you to think about what is important to you and to record your wishes for your future care and treatment. It ensures that if there comes a time when you are too unwell to speak for yourself, the doctors and nurses treating you, and your family, know exactly what you would want. In the UK, there are specific legal and clinical tools you can use to make your voice heard. Taking the time to record these wishes is a proactive way to maintain control over your life and ensure your care remains dignified and personal. 

What We’ll Discuss in This Article 

  • The three main ways to record your wishes in the UK 
  • Creating an Advance Statement of your preferences 
  • Making a legally binding Advance Decision to Refuse Treatment (ADRT) 
  • The role of Lasting Power of Attorney (LPA) for health and welfare 
  • How the ReSPECT process integrates your wishes into emergency care 
  • Where to store your documents so they are available to medical teams 
  • Discussing your plans with family and your heart failure nurse 

The Three Ways to Record Your Wishes 

In the UK, there are three primary ways to document your future care preferences. Each serves a different purpose. 

1. Advance Statement 

An Advance Statement is a record of your general preferences and values. It is not legally binding, but it must be taken into account by anyone making decisions for you. 

  • What to include: Your preferences for where you want to be cared for (e.g., at home or in a hospice), your religious or spiritual beliefs, and even daily preferences like food or music. 
  • Benefit: it helps medical staff understand you as a person, not just a patient. 

2. Advance Decision to Refuse Treatment (ADRT) 

An ADRT is a legally binding document that allows you to specify which medical treatments you do not want to have in the future. 

  • When it applies: It only comes into effect if you lose the capacity to make or communicate decisions for yourself. 
  • Requirements: For it to be legally binding to refuse life-sustaining treatment, it must be written down, signed, witnessed, and include the statement that it applies ‘even if life is at risk’. 

3. Lasting Power of Attorney (LPA) 

An LPA is a legal document where you appoint one or more people (attorneys) to make decisions on your behalf if you lose capacity. 

  • Health and Welfare LPA: This covers decisions about your daily routine, medical care, and whether to move into a care home. 
  • Registration: An LPA must be registered with the Office of the Public Guardian to be valid. 

The ReSPECT Process 

In many parts of the UK, your wishes are integrated into a ReSPECT form (Recommended Summary Plan for Emergency Care and Treatment). This is a clinical document that summarizes the outcomes of conversations between you and your medical team. It provides immediate guidance to paramedics and doctors during a crisis, ensuring they follow your recorded preferences regarding treatments like CPR or ventilation. 

Steps to Creating Your Plan 

  1. Reflect: Think about what matters most to you. Would you prioritize quality of life or the length of your life? 
  1. Discuss: Talk to your heart failure nurse or GP. They can explain the clinical side of certain treatments so your decisions are well-informed. 
  1. Draft: Use official templates, such as those provided by the NHS or charities like Compassion in Dying. 
  1. Share: Give copies to your GP surgery, your hospital specialist, and your family. 
  1. Store: Keep your original copies in a safe but accessible place. Many people use the ‘Message in a Bottle’ scheme (kept in the fridge) or a clear folder by their front door. 

Involving Your Family 

While these documents are yours, they are also a gift to your family. Discussing your wishes openly reduces the emotional burden on your loved ones, as they will not have to guess what you would have wanted during a stressful medical emergency. It ensures that everyone is ‘on the same page’ regarding your heart failure journey. 

Conclusion 

Making an advance care plan is a vital part of living with a long-term condition. Whether you choose to make a simple Advance Statement or a legally binding Advance Decision, you are taking a responsible step to protect your future self. These documents are not set in stone; you can review and change them at any time as your condition or your priorities evolve. By recording your wishes today, you ensure that your care always reflects your values, regardless of what the future holds for your heart. 

Emergency Guidance 

In an emergency, medical teams will look for your ReSPECT form or ADRT. Ensure your family or carers know exactly where these are kept so they can hand them to paramedics or hospital staff immediately upon arrival. 

Do I need a solicitor to make an ADRT? 

No, you do not need a lawyer to make an Advance Decision (ADRT), but it must meet specific legal criteria to be binding. Many people use free templates from organizations like the British Heart Foundation. 

Can I make an LPA myself? 

Yes, you can apply for a Lasting Power of Attorney online through the GOV.UK website. There is a fee for registration, although you may be exempt if you are on certain benefits. 

Does an Advance Statement cover my funeral wishes?

You can include them, but a will or a separate funeral plan is usually the best place for those instructions, as the Advance Statement is primarily for your medical care while you are alive. 

What happens if I move to a different part of the UK? 

While the legal principles are similar across the UK, the specific forms (like ReSPECT) may vary. It is best to show your existing plan to your new GP surgery so they can update your local records. 

Why is my heart failure nurse asking me about this now? 

They are asking because they want to ensure you are in control of your care. It is much better to have these conversations while you are stable and can think clearly, rather than in the middle of a health crisis. 

Can a doctor overrule my ADRT? 

A legally valid and applicable ADRT cannot be overruled by a doctor. If you have clearly refused a specific treatment in writing, the medical team must respect that decision. 

Should I give a copy of my plan to my children? 

Yes. Providing copies to your next of kin ensures that they can act as your advocates and ensure your recorded wishes are followed by the medical team. 

Authority Snapshot 

This article was written by Dr. Stefan Petrov, a UK-trained physician with experience in emergency care, surgery, and intensive care units. Dr. Petrov has assisted many patients in the clinical and legal process of documenting their future healthcare preferences. This guide is based on the Mental Capacity Act 2005 and current NHS England standards for Advance Care Planning (ACP) and ReSPECT

Harry Whitmore, Medical Student
Author
Dr. Stefan Petrov, MBBS
Reviewer

Dr. Stefan Petrov is a UK-trained physician with an MBBS and postgraduate certifications including Basic Life Support (BLS), Advanced Cardiac Life Support (ACLS), and the UK Medical Licensing Assessment (PLAB 1 & 2). He has hands-on experience in general medicine, surgery, anaesthesia, ophthalmology, and emergency care. Dr. Petrov has worked in both hospital wards and intensive care units, performing diagnostic and therapeutic procedures, and has contributed to medical education by creating patient-focused health content and teaching clinical skills to junior doctors.

All qualifications and professional experience stated above are authentic and verified by our editorial team. However, pseudonym and image likeness are used to protect the reviewer's privacy. 

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