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).
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  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kept alive in this condition – but she had not written a valid AD and the judge refused permision for treatment to be withdrawn, holding that it would “be wrong to attach significant weight to those statements made prior to her collapse” when setting them against “the importance of the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.
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.
|Prof Celia Kitzinger (Department of Sociology, University of York)|
|Prof Luke Clements (Cardiff Law School, University of Cardiff)|
|Dr Anne-Marie Slowther (Warwick Medical School. University of Warwick)|
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)
Title: Structural issues in implementing Advance Decision-Making: Doctors, Lawyers and End of Life Decision-Making
Date: 20 May 2013
Title: to be confirmed
Date: to be confirmed
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).
Poster from the Before I Die Festival: Before I Die Poster (PDF , 93kb)
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