What is an Advance Decision?

A recent interview between Professor Kitzinger and Eddie Mair on BBC Radio 4’s PM focussed on the sad story of Professor Kitzinger’s sister, Polly, who suffered very serious injuries in a car crash which left her in a minimally conscious state.

Polly’s family believed that the views she had expressed verbally when she was fit and well indicated that she would not wish to carry on living in these circumstances. However, in the absence of an Advance Decision, they found it impossible to obtain acceptance of these views by Polly’s doctors. The interview highlighted the role that Advance Decisions have to play  when a patient can no longer express their own preferences about their medical treatment.

Advance Decisions: how to make one

Advance Decisions are governed by the Mental Capacity Act 2005 and before this were often referred to as “Living Wills”. In order to enter into an Advance Decision the person making it must be over 18 and mentally competent. The Advance Decision should specify precisely what treatment is refused and, if this is life sustaining treatment, then the Advance Decision must be written, signed by the person making it, witnessed and include a statement that it is to apply even if life is at risk. A record made electronically or in medical notes will be regarded as being written. It is not possible to refuse basic nursing care or to request the acceleration of your death by drugs or other means, or to refuse certain treatment if you are detained under the Mental Health Act.

For example, Harry, aged 70, is presently in good health and mentally competent. He enters into an Advance Decision stating that if he were to be diagnosed with a terminal illness, and expected to have less than three months to live, he would not wish to be resuscitated if he were to suffer cardiac arrest, or given artificial aid to breathe such as a ventilator, or given antibiotics to treat any infection that he might acquire.

Implementation of Advance Decisions

An Advance Decision will only be implemented when the person making it has lost capacity. Until that point the person concerned retains the ability to make decisions as the situation arises. If someone has done something inconsistent with the Advance Decision since making it then it may not be implemented. For example, Mary specified in her Advance Decision made in 2010 that if she does not have capacity then she would not wish to receive a blood transfusion even if her life depended on it. However, in 2013 Mary required a blood transfusion following an operation and she consented to this treatment. In 2015, Mary was incapacitated by a stroke and required another blood transfusion.  The transfusion was given, despite the Advance Decision, as Mary’s conduct since entering into the Advance Decision had been clearly inconsistent with its provisions in this respect.

An Advance Decision might not be implemented if circumstances arise which the medical staff believe would have affected the patient’s decision, if they had anticipated them.

So, for example, Jane has multiple sclerosis which may give rise to her incapacity at some point, although the form of the disease from which she suffers is such that she has a life expectancy of some years. Jane has entered into an Advance Decision specifying that if she loses capacity she does not wish to be resuscitated if the need arises. She then suffers a car accident which leaves her unconscious and she requires emergency resuscitation as a result of the accident. The medical team treating Jane could take the view that, had she anticipated these precise circumstances, Jane would not have refused treatment, and consequently they decide not to implement her Advance Decision in this instance.

Other limitations to an Advance Decision

An Advance Decision can only deal with the refusal of specified medical treatment in certain defined circumstances. It cannot require your medical team to give you specified treatment and it cannot give someone else the right to make medical decisions on your behalf if you are incapacitated.

You can appoint someone to make medical decisions for you by entering into a Health and Welfare Lasting Power of Attorney, which will give the attorney power to make decisions concerning medical treatment and other personal welfare decisions. If an attorney is appointed for this purpose  any prior Advance Decision will not then be implemented as the decision then lies with the attorney. If, however, your objective is simply to deal with the refusal of medical treatment in the event of incapacity then it is likely that an Advance Decision will suit your needs better than the more formal Health and Welfare Lasting Power of Attorney.

For further information please contact Anne Minihane.