A Loughborough University professor has highlighted the importance of forward planning about end of life issues in a report released today.

Professor Sue Wilkinson has called for greater public awareness of Advance Decisions (‘living wills’), as well as training of healthcare professionals, and the introduction of a central register.

In 2005, the Mental Capacity Act (MCA) made Advance Decisions to refuse treatment legally binding in statutory law. Since 2010, the national charity Compassion in Dying has been providing free information on end of life issues and Advance Decision forms. 

Professor Wilkinson, founding member of the Helpline Research Unit in Loughborough’s Department of Social Sciences, reviewed more than 200 calls to Compassion in Dying. She found that major barriers to patients exercising choice were doctors’ failure to engage with patients about their Advance Decision, and the lack of systems in place to record them. 

The study also found women (84% of callers) are more likely than men (16%) to make their wishes known at the end of life.

Professor Wilkinson said:

“This study has led to a number of recommendations for Compassion in Dying, and more broadly for the integration of Advance Decisions into advance care planning at the end of life. 

“There is a need to better inform and support the general public in preparing for the end of life by extending outreach activities such as Compassion in Dying’s information line, and in addition engaging further with healthcare professionals. This is especially important given the central role GPs hold and that they are the professionals with whom most people want to hold end-of-life discussions.

“In the broader end of life arena I believe that a central register for Advance Decisions would help to better integrate them into advance care planning and thus make them more effective.”

Danielle Hamm, Director of Compassion in Dying said:

“We know that the majority of people (82% of those polled by YouGov in 2011) have strong feelings about their care at the end of life, yet very few people (3%) are recording them in an Advance Decision. This report is important to help to understand why this is the case. 

The finding that poor professional practice and inadequate recording systems pose a barrier to people exercising their choices at the end of life is unacceptable. Compassion in Dying will work to raise awareness of these issues with healthcare professionals, in order to help ensure more people have what they consider to be a good death.”

Read the executive summary here
View the full report here

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