PPIW Report Publication: Increasing Understanding and Uptake of Advance Decisions to Refuse Treatment in Wales.

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:

  • Public education, media engagment and cultural events to encourage people to plan for potential future loss of capacity;
  • De-bunking the myth that ‘next of kin’ have decision-making powers and correcting official forms that may mislead people about the legal status of their own or a relative’s expressed wishes;
  • Facilitating access to well designed ADRT forms/guidance and skilled support, both for the general population and for particular groups;
  • Normalising ADRTs (e.g. offering registration when patients sign up with a GP);
  • Training relevant practitioners to ensure that they understand what ADRTs are (and when they are valid and applicable), are able to provide appropriate guidance or referral, and can act in accordance with the law concerning them;
  • Creating an All-Wales national repository – flagging key emergency decisions and ensuring accessibility of full ADRT documentation.

To view the report, click here.

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