Compassion in Dying – Advance Decisions

Compassion in Dying this week launched a new Advance Decision to Refuse Treatment form to enable you to feel in control and express your wishes, choices, preferences with regards to medical treatment should you lose the capacity in the future to communicate or indicate what you wish to happen. Compassion in Dying explain here what this means along side the link to relevant forms:

Stay in control of your health – now and in the future

Throughout our lives we make countless decisions about our healthcare, and being in control of these choices is something many of us value. Unfortunately, often it’s only once we or a loved one has lost this autonomy that we realise just how important it is to us.

Fortunately, there is a way to remain in control, and Compassion in Dying has just made it easier and simpler than ever with our new and improved Advance Decision form.

An Advance Decision allows you to record any treatments that you do not want to be given in the future, in case you later become unable to make or communicate decisions through injury or illness. It allows you to remain at the heart of these choices, giving you peace of mind that if the worst does happen your wishes will still be followed.

Jakki Cowley of Empowerment Matters supports our new form and feels strongly that greater awareness of Advance Decisions is needed. Jakki is an advocate who helps families navigate the complicated and often traumatic legal processes which can arise when someone has lost capacity and hasn’t recorded their wishes beforehand in a legally binding way.

Jakki explains, “People assume they can just tell a family member their wishes and that’s enough – that next of kin can make these decisions on your behalf – but it is a doctor who has the final say. Without something legally binding in place like an Advance Decision, your loved ones may have to go through a traumatic court process to have your wishes respected and followed.”

The message is clear – if you want a say over your future treatment and care, make an Advance Decision. And contrary to popular belief, it’s not expensive or complicated to do so – our new form is free, simple and easy to complete. We’ve consulted with service users, clinicians, lawyers and members of the public over several months to develop a form that works for everyone and can be personalised to reflect your own wishes.

The form is now shorter and simpler, taking you through different conditions in which you could lose capacity so you can record your treatment wishes for each scenario clearly and concisely. It also includes a section in which you can state other wishes and preferences, such as where you’d like to be cared for, and your wishes regarding pain relief, pregnancy and organ donation. There is also space to include details of your Lasting Power of Attorney for Health and Welfare or anyone else you want to be involved in your care.

With this new form, recording your wishes for future treatment couldn’t be easier. It doesn’t cost you anything and you can work at a space that suits you, but the reassurance and peace of mind you’ll get for you and your loved ones is invaluable. Make an Advance Decision and ensure you stay in control of your health – now and in the future.

Compassion in Dying’s free Info Line can be reached on 0800 999 2434 or

More information can be found at


Talking about Paul Briggs

This week, Monday 20th February, Jakki and Lindsey Briggs appeared on This Morning to talk about Paul Briggs and how if he had made an advance decision to refuse treatment (ADRT) the issue of going to the Court of Protection would not have occurred. Lindsey emphasised the importance of creating a document if you have views about not having life sustaining treatment in certain situations. She describes how family could have enacted Paul’s wishes much sooner and that this would have been in line with his wishes in terms of also not wishing for his family to go through the CoP process.

For those wishing to catch up on the programme, both Jakki and Lindsey are speaking from 11am: This Morning TV Show

Compassion in Dying have also launched a campaign ‘Make it your decision’ to raise awareness of ADRTs and you can access further information on this here: Make It Your Decision

How the DoLS can give voice to people with minimal consciousness

Earlier this week, Paul Briggs died, eighteen months after sustaining a traumatic brain injury in a road traffic collision that left him in a minimally conscious state (Source: BBC News). His death came a month after the Court of Protection had ruled that clinically-assisted nutrition and hydration CANH should be withdrawn from Paul as this was in his best interests. Paul’s wife, Lindsey, had applied to the court for CANH to be withdrawn on the basis that that was what Paul would have wanted.

This article written by Jakki considers the deprivation of liberty safeguards and their role in disorders of consciousness Prolonged Disorders of Consciousness & DoLS

Family of Paul Briggs encourage others to discuss end of life care

On Saturday 21st January, Paul Briggs, husband to Lindsey Briggs passed away further to a Court of Protection judgment in December that declared it was in his best interests for Clinical Assisted Nutrition and Hydration (CANH) and commonly referred to as a PEG tube to be withdrawn.

Lindsey contacted Empowerment Matters in December 2015 having been in touch with the Coma and Disorders of Consciousness Centre (CDOC) and asked Jakki to become Paul’s advocate. On behalf of the family, Jakki has spoken to several media sources including BBC  Breakfast, Radio 5 Live, The Jeremy Vine Show and Granada Reports about the role of advocacy, best interests decision making and the values that Paul held that ultimately led to the decision in December 2016 by Mr Justice Charles. The following is an excerpt from Granda Reports that has followed Paul’s story over the last few months and conveys what family would like others to be aware of.

The role of advocacy in PDOC

Judgment in the Court of Protection – Paul Briggs

New Challenge Guidance

New resource for practitioners to support effective challenge

Empowerment Matters worked with VoiceAbility to produce a new Practice Guide for challenging decisions or actions with or on behalf of individuals involved with social care and health services.

The first of its kind, this Guidance provides comprehensive information to support advocates and professionals to decide on the most appropriate route to take to challenge decisions based on the person’s views and situation.  This guide will help advocates to develop a ‘tool-kit’ of different approaches in order to get the best possible outcome for people.

The full Guidance can be downloaded here: Guidance on Challenging Decisions – July 2015

The Guidance provides detailed information on the spectrum of methods to resolve issues including:

  • Taking an informal approach to challenge; when this is most appropriate and the skills required to be effective, including negotiating and influencing;
  • Formal routes to challenge; under the Mental Capacity Act 2005; Mental Health Act 1983; and Care Act 2014 as well as formal complaints processes and judicial review.

The Guide will be helpful to advocates, family members and others who often take on the crucial role of supporting people to raise their own concerns, or challenging decisions on their behalf, were necessary.  It provides essential reference materials, case examples and references to relevant Articles with Acts and Statutory Guidance and aims to increase the knowledge and confidence of those challenging decisions in often very complex situations.

The Guide was commissioned by VoiceAbility, written by Empowerment Matters with legal advice from Irwin Mitchell LLP and substantial guidance and input from advocates at VoiceAbility.