Advance Decisions: Informing Implementation Strategies through Interdisciplinary and Cross-national Dialogue

Respect for patient autonomy and the right of individuals to make their own healthcare decisions where possible lies at the core of the recent Mental Capacity Act 2005.   The Act gives statutory authority to “Advance Decisions” (ADs) – enabling people to communicate their healthcare decisions in advance of losing the capacity to do so (e.g. due to coma or dementia).    This is increasingly important when new medical technologies mean it is now possible keep people alive for years or for decades in permanent vegetative or minimally conscious states (i.e. with no – or virtually no – awareness of themselves or their environment).

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Many people say they would not want to be kept alive artificially if they were barely conscious, severely brain damaged, unable to recognise family and friends, and totally dependent on 24/7 nursing care, but only 3% of people in the UK have legally effective ADs. This problem was highlighted in a recent court case (W v M & Ors [2011] EWHC 2443 (Fam) concerning a woman (known only as “M”) who contracted viral encephalitis (a brain disease) nearly ten years ago, the night before she was due to leave for a skiing holiday, and has been in a virtual coma (“minimally conscious”) ever since. Her family described her as “fiercely independent” and say that she would never want to be kept alive in this condition – but she had not written a valid AD and the judge refused permision for treatment to be withdrawn, holding that it would “be wrong to attach significant weight to those statements made prior to her collapse” when setting them against “the importance of the sanctity of life.” A valid AD must be in writing, signed, witnessed and (if the person means to refuse CPR, artificial ventilation, artificial nutrition and hydration or other potentially life-saving interventions) must specifically state that the decision is to apply even if the person’s life is at risk.

Advanced Decision Meeting

This seminar series brings together experts in medicine (GPs, intensivists, palliative care), law (including practicising barristers and solicitors), bioethics and the social sciences, and representatives from charities working with ADs (e.g. Compassion in Dying) to explore attitudes to and uptake of ADs five years after statutory implementation. We will address the extent to which they are effective in end-of-life decision making (e.g. how do health professionals and families understand them?) and our work will inform future implementation strategies.

About Us

Staff involved in this project:

Prof Celia Kitzinger (Department of Sociology, University of York)
 Professor Luke Clements (Cardiff Law School) Prof  Luke Clements (Cardiff Law School, University of Cardiff)
 Dr Anne-Marie Slowther (Warwick Medical School)  Dr Anne-Marie Slowther (Warwick Medical School. University of Warwick)

 

Seminars

Seminar Series

Seminar 1 (University of York)

Title: Writing Advance Decisions - Promise and Pitfall

Date: 9 October 2012

Downloadable pdf: Seminar 1 Programme (PDF  , 110kb)Seminar 1 Berlinger (PDF  , 417kb)Seminar 1 Halliday (PDF  , 2,724kb)Seminar 1 Pablo Simon (PDF  , 1,172kb), Lucy Series Seminar 1 Presentation (PDF  , 762kb)

Seminar 2 (University of Cardiff)

Title: Structural issues in implementing Advance Decision-Making: Doctors, Lawyers and End of Life Decision-Making

Date: 20 May 2013

Downloadable pdf: Seminar 2 Programme (PDF  , 171kb)Seminar 2 Sue Wilkinson Presentation (PDF  , 1,094kb)Derick Wade Seminar 2 (PDF  , 168kb)

Seminar 3 (University of Warwick)

Title: to be confirmed

Date: to be confirmed

Downloadable pdf:

Impact

Advance Decisions:Documenting end of life wishes – the legal and ethical framework

As part of the Before I Die Festival, we presented a panel discussion at Cardiff Law School (20 May 2013 6.00-8.00pm) open to members of the public and attended by nearly 80 people – including lawyers (we had CPD accreditation from the Solicitor Regulation Authority), funeral directors, care workers, and others with personal and professional experience of death and dying. 

A panel of prominent academics and practitioners each spoke for around 7 minutes and Mark Drakeford, Minister for Health and Social Services, also attended part of the evening and presented his own reflection on the implications of advance planning for end-of-life care issues in Wales.  The panel was followed the next day by an Advance Decision Writing Clinic with one-to-one help available from members of the panel.

Some of these presentations are available for you to listen to. They are talks with slides (about 7mins each).

The Introductory Video is available via this link

  • Luke Clements Professor of Law at Cardiff University describes the legal background to the Mental Capacity Act’s statutory support for Advance Decisions
  • Philip Satherley talks about the work of the charity, Compassion in Dying, which provides free Advance Decision templates and a telephone helpline. Watch the Youtube video here
  • Anne-Marie Slowther, Chair of the UK Clinical Ethics Network and Associate Professor of Clinical Ethics, Warwick Medical School addresses the question “What if I change my mind?”  Watch the Youtube video here
  • Sue Wilkinson, Professor at Loughborough University reports on the reasons people give for wanting to write Advance Decisions and some of the barriers to doing so. Watch the Youtube video here
  • Penney Lewis, Professor of Law at Kings College London, describes how the courts have handled purported Advance Decisions. Watch the Youtube video here
  • Nancy Berlinger, Deputy Director of the Hastings Centre, New York reports on the US experience, where up to 30% of people have Advance Decisions. Watch the Youtube video here
  • Celia Kitzinger, Director of the York Chronic Disorders of Consciousness Research Group, reports on research showing that family members of people who have suffered catastrophic brain injury are much more likely than others to write Advance Decisions and to refuse life-sustaining treatments from an early stage. Watch the Youtube video here
  • Jenny Kitzinger, Professor of Communications, Cardiff University and Director of the Cardiff Chronic Disorders of Consciousness Research Group, reflects on the lessons for the UK in developing social policy on end of life care. Watch the Youtube video here

Poster from the Before I Die Festival: Before I Die Poster (PDF  , 93kb)

 31 January 2013.  Practitioner Research Network Meeting

Celia Kitzinger (University of York) gave a talk about advance decisions to the Practitioner Research Network Meeting, Sue Ryder Care Centre at Queens Medical Centre in Nottingham. Based on joint research with Jenny Kitzinger (Cardiff University), the focus was on the way in which interviewees with family members in chronic disorders of consciousness talk about their own end of life wishes. A key finding was that these interviewees were ten times more likely than the population generally to have written a formal AD (30% as compared with a national average of 3%) and that many wished to refuse, in advance, all life-prolonging treatments whatsoever. The implications of this for practice and policy about ADs are discussed. The slides are in this powerpoint: Kitzinger Ryder AD CDoC (PDF  , 160kb)

Chronic Disorders of Consciousness Group

University of York

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