2016 Annual MDMD Lecture

Advance Decisions, Advance Statements, and Policies around Assisted Dying in England + Wales

Prof Celia Kitzinger | University of York
Co-Director of the Coma & Disorders of Consciousness Research Centre
Working with Prof. Sue Wilkinson, founder of Advance Decisions Assistance

Slides available here



Celia started her talk by explaining what an Advanced Decision (AD) is – a legally binding way of making decisions about health care if mental capacity is lost including the Right to Refuse life prolonging medical treatment. It is not the same as apparently similar documents such as: Do Not Resuscitate; Advance Statements; Advanced Care Plans or overseas Documents relating for example to Dignitas.

A Lasting or Enduring Power of Attorney is a way of giving someone else the power to make decisions over medical decisions concerning you, when you do not have the mental capacity to make them yourself. If there is a conflict between the statement in an AD and the opinion of a Power of Attorney, the most recent will take precedence.

To write an AD a person must be over 18 and have the mental capacity to do so – depression and other mental illnesses are not necessarily disqualifications. A solicitor is not required.

If you have the mental capacity, you have the absolute right to refuse treatment; ie. You are the decision maker. An AD extends this right in the situation where you do not have mental capacity.

The Mental Capacity Act 2005 defines “Mental Capacity” as the ability to understand, weigh up and retain information. Mental Capacity can be decision specific. It can be lost permanently or it can fluctuate. An individual is presumed to have mental capacity unless it can be shown that they have lost it. An individual is entitled to support if mental capacity is either fluctuating or temporarily lost as in dementia.

In effect, having an AD gives you the right to refuse treatment prospectively and allows you to retain your autonomy and personal decision making.

An Advance Value Statement is important too. It can include your personal definition of recovery. It provides an opportunity to express your values and beliefs – it clarifies what you value in life. It explains why you have made the decisions you have made in your AD. It can provide the opportunity to persuade those professionals involved in your care to give you the care you wish for. It also provides an opportunity to thank the healthcare team for respecting your views. A carefully worded personal statement can be very convincing – so can an accompanying video discussion with someone asking challenging questions.

To ensure your AD is effective, consider your AD in relation to your Enduring or Lasting Power of Attorney (EPA/LPA). Ensure you are refusing what you want to refuse. If you change your mind, update the changes then date and sign them. If your circumstances change, update and sign these also.

It is advisable to discuss your AD with your GP. If you have doubts about your mental capacity, get a statement of capacity.

There is currently no central register so make sure you give a copy to your GP, to family, to friends, neighbours – anyone for whom it might be relevant. You need to ensure it is seen by health care professionals before they treat you.

Carry a copy with you if you go to hospital. Re-visit and if necessary revise your AD before an operation.

You can not use an AD to request an Assisted Death. Assisted Dying is not lawful in the UK. Even if it was, an AD is about refusing treatment. An AD cannot be used to demand poison, nor can it be used to compel doctors to give you a particular treatment. However, it can indicate you would accept sedation and it can cover refusal of treatment following suicide attempts.

Celia’s talk discussed a number of useful examples of ADs, and demonstrated the different concerns people have in their 20’s from later in life when their medical situation is clearer.

Celia ended her talk by considering ADs in the context of attempts to change the law on assisted dying. She explained that in the debate around the introduction of ADs, the same arguments were used as are now being used against a change in the law to permit assisted dying:

That they may discourage Palliative Care &/or Rehabilitation;
There are huge uncertainties around diagnosis and prognosis;
The possibility that at the time of writing your AD you may not actually have wanted it and/or you were being bullied or coerced into writing it;
The fear of being a burden;
By the time the AD applies, you may have changed your mind;
The role of doctors and conscientious objectors in relation to the Hippocratic Oath;

She then considered the primary objection to changing the law on assisted dying – how to protect vulnerable people. She highlighted the Care Act 2014 as legislation that already exists to protect the vulnerable. The idea is not to overrule the wishes of an adult with capacity, but to ensure that they are making decisions freely. There are many health and welfare professionals who are experienced in assessing a person’s capability to make decisions and the extent to which they may have been persuaded by others. She proposed that right to die proponents capitalise on this experience.