Expert Opinion: Can medical treatment be refused by an Advanced Decision?

Genevieve Powrie, associate at Cheshire law firm SAS Daniels, discusses the consequences of having an Advanced Decision in place, sometimes referred to as ‘Living Wills’ as, sadly due to the impact of coronavirus, more of us are giving greater thought about what will happen should we fall ill.

During such an uncertain time, many people have sadly been confronted with the reality of life and death. It has forced people to take action in ensuring their own lives are in order, and many people have begun making Wills among other things including an advance decision.

What is an Advanced Decision?

A Living Will, known legally as an “Advance Decision” is a legal document setting out your instructions for the refusal of medical treatment.  It is not possible under the current law of England and Wales to demand a certain treatment (because that is the professional judgement of the treating clinician), but you can refuse treatment, if you are well enough to do so.

There might be circumstances, however, when an accident or an illness leaves you unable to refuse life-sustaining treatment. If you did not make an Advance Decision or a Health and Welfare Lasting Power of Attorney (LPA), the clinical team must use their own judgement to decide whether or not to proceed with a certain treatment, and the preservation of life at all costs is often the driving force.

If your family disagree with the clinical team, they can apply to the Court of Protection for a judicial best interests declaration, but this is a stressful and often slow and expensive process, and the decision could arrive too late. For example, a patient receiving life sustaining treatment after a catastrophic injury could recover to the extent that they can breathe and swallow independently before a Court decision is made.  There would then be no life sustaining treatment to withdraw and the patient (in the worst case prognosis) would remain minimally conscious and fully dependent on others for every aspect of their care for the rest of their life. This is an outcome that many would not wish upon themselves or their loved ones.

What Powers Do the next of Kin Have?

Many people are unaware that a family has no decision-making power in the clinical process at all, unless the patient had appointed them as health and welfare attorneys.

A well drafted Advance Decision can set out the precise set of circumstances that you might want to refuse life sustaining treatment, making it clear, for example, that at least two doctors must agree that there is no prospect of recovery to a specified level, such as communication or mobility. A valid and applicable Advance Decision is legally enforceable, and doctors will not be able administer life sustaining treatment in the circumstances you have specified.

A Real Life Example of the impact of Advanced Decisions on medical treatment

At a Court of Protection Practitioners conference last year, one of the most memorable speakers had a personal tale to tell about her sister. Their story really helps to illustrate why we should all consider making either a “living will” – known legally as an Advance Decision   – or a Health and Welfare LPA, or both.

Sue’s sister, Amy (not their real names), had been full of adventure and zest for life. She was young, confident and independent. She travelled the world to remote places, and loved exploring, sailing, hiking and the great outdoors. Professionally, she was a champion for vulnerable people’s freedoms and rights of expression. One day, a car accident ended her life as she knew it. She was severely brain damaged. Her loving sister, and family, tried to become involved with the medical decisions which might have led to the termination of Amy’s life in those early days, in circumstances where it became clear she would never regain full consciousness. However, they were excluded from those decisions, because Amy had never made any legal documents to express what she would have wanted in that situation.

Over the course of many years, Amy recovered to a very limited extent, no longer dependent on a ventilator or a feeding tube, but unable to communicate, smile, walk or feed herself. Her family believe that she would have wanted anything but this.

An Advance Decision could have refused the interventions in those first few days and weeks which led to Amy travelling an irreversible path to a life without a voice, without joy, without hope. If those early life-sustaining interventions could have been refused, then Amy would have passed away peacefully and naturally, and with the dignity that her family believe was so important to her.

Genevieve Powrie is an Associate Solicitor in the Wills, Trusts and Probates team at SAS Daniels’ Macclesfield office; the full-service law firm also has offices in Stockport, Chester and Congleton.