The Minister for Health and Social Services asked the Public Policy Institute for Wales (PPIW) to provide independent advice on how to increase the understanding and uptake of Advance Decisions in Wales. The PPIW has worked closely with Professor Jenny Kitzinger (Cardiff University) and Professor Celia Kitzinger (University of York) to examine the literature and evidence in this area as well as undertaking engagement sessions with stakeholders directly involved in this area before providing recommendations to the Welsh Government.
An ‘Advance Decision’ is a legally binding record (given statutory force by the Mental Capacity Act 2005) of the treatments that someone wishes to refuse should they lose the ability to make such decisions for themselves in the future. This can include, for example, refusing life-sustaining treatment if you are diagnosed as being in a permanent vegetative state as a result of a car accident or illness. Only 2% of people in Wales have made an ADRT, which means that it is lagging well behind England and many other European countries.
The PPIW report identifies barriers to the uptake of ADRTs including: misunderstanding about what is involved; scepticism about whether the patient’s wishes will be respected; and the mistaken belief that an ADRT is unnecessary if someone has already informed family members or healthcare professionals of what they would want.
The report highlights a number of actions which the Welsh Government, along with charities and other organisations, should take to ensure people understand their options for advance care planning, and that their right to refuse treatment, if they so wish, is respected. These include: