This week PPIW published a report by Professors Jenny Kitzinger (Cardiff University) and Celia Kitzinger (University of York) which provides independent advice to the Welsh Government on how to increase the understanding and uptake of Advance Decisions in Wales.
I welcome this report and its recommendations.
Many people wrongly assume that if they are no longer able to make decisions about medical treatment for themselves, their families will be able to make those decisions for them. In fact, under the Mental Capacity Act 2005, all decisions for someone who lacks capacity are taken on a ‘best interests’ basis, and no one person’s views are determinative.
If families and doctors cannot agree, the Court of Protection must be asked to decide what should happen. In some cases, including decisions about withdrawing life-sustaining treatment from people in low-awareness states, the Court becomes involved even if everyone is in agreement that treatment should be stopped.
The involvement of lawyers and the court system takes place at the most difficult time for families. As well as worrying about their loved one, and perhaps coming to terms with an impending death, they are suddenly required to write witness statements, attend court hearings, and be cross-examined about what they think their loved one would have wanted. I have seen the distress that this causes families, even if the court eventually agrees with them about what should happen.
Sadly, there are very few cases in which the patient prepared an advance decision to refuse treatment, or wrote an advance statement of wishes. In one case, a patient known as Mr D had been worried about being left in a low awareness state after undergoing surgery. He wrote a letter before the operation which said that he did not want to be kept alive by artificial feeding if his life was ‘of a significantly reduced quality, with little or no hope of any meaningful recovery, where I would be in a nursing home/care home with little or no independence’. Tragically, complication arose, and Mr D was left in a vegetative state. Because his letter did not comply with the strict requirements of the Mental Capacity Act 2005 – it was not witnessed – it could not be relied on to permit the withdrawal of life-sustaining treatment. Mr D was kept alive for many months against his clearly expressed wishes while the court process took place.
In another case, even though the patient’s family were sure she would not have wanted to be kept alive in a minimally conscious state, the court held that her likely wishes could not be given significant weight. In both these cases, if the patient had completed an applicable and valid advance decision, this would have overridden all other views and preserved their autonomy even though they no longer had capacity.
In my view, an advance decision would have prevented the need for the court to become involved at all in their cases. Even if no advance decision exists, any written statement about the person’s wishes and preferences will be extremely valuable for the judge whose job it is to decide what that person would have wanted. The Mental Capacity Act provides a firm legal foundation for people’s wishes when they have capacity to be implemented when they cannot take decisions for themselves, and in my experience, greater awareness and use of these powers by the public can only be a good thing – after all, the last person anyone wants to spend time with when a loved one is seriously ill or dying is a lawyer.