Conference: European Understandings of Advance Decision-Making

14 July 2017

12th September, 2017, University of Leeds, Leeds, UK

This interdisciplinary conference marks the culmination of the ESRC research seminar series ‘Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach’.

Registration

Registration for the conference is free, but compulsory. Numbers are limited and early registration is highly recommended. Please register via Eventbrite: https://www.eventbrite.co.uk/e/understandings-of-advance-decision-making-an-interdisciplinary-conference-tickets-33922111950. Bursaries will be available to fund travel and accommodation costs for PhD students – please email S.Halliday[at]leeds.ac.uk if you wish to apply for financial support. The conference is aimed at both academic and professional attendees.

Keynote speakers

Professor John Ellershaw (Professor of Palliative Medicine, University of Liverpool)
Professor Rob Heywood (Professor of Medical Law, University of East Anglia).

Speakers

Dr Louise Bramley, University of Nottingham: Negotiating care services with frailty: Implications for decision making and advance care panning.  Abstract

Astrid Gieselmann & Professor Jochen Vollmann, Ruhr Universität Bochum: How should advance directives be implemented in psychiatry? Clinicians’ attitudes toward different types of advance directives in psychiatric treatment in Germany.  Abstract

Dr Samantha Halliday, University of Leeds, & Professor Jean McHale, University of Birmingham: Basic care, advance decisions and the Burke effect. Abstract

Dr Ruth Horn: “Why should I question a patient’s wish?” A comparative study on physicians’ perspectives on their duties to respect advance directives.  Abstract

Gillian Loomes, University of York: Cripping the Crystal Ball: Exploring the Synergies and Tensions when Advance Care Planning and Disability Politics Meet.  Abstract

Dr Alicia Perez Blanco, Hospital Universitario de La Princesa, Madrid: Can advance care planning enhance decision-making at end-of-life in the Intensive Care Unit?  Abstract

Kevin De Sabbata, University of Leeds, Advance Directives, Dementia and the UN Convention on the Rights of Persons with Disabilities: A new role for anticipated will.  Abstract

Professor Jo Samanta, De Montfort University: Advance decisions and Welfare LPAs: belt and braces for advance care planning?  Abstract

Dr Lucy Stephenson, Kings’ College London: Provision for Self-Binding Advance Directives Should be Included in Mental Health Act Reform.  Abstract

The conference is generously funded by the Economic & Social Research Council (ESRC).

Organisation

This conference is part of the research seminar series ‘Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach’ funded by the Economic and Social Research Council. It is being organised by the grant holders, Dr Samantha Halliday, Prof. Jörg Richter and Prof Gillian Hundt.

Further information here.

 


Seminar: My Life, My Decision: A new approach to advance care planning

28 September 2016

Thursday October 20, 2016

1:30 PM – 5:00 PM

Church House Westminster, Deans Yard, London

A free seminar organised by Compassion in Dying:

My Life, My Decision was an ambitious, multifaceted programme of work delivered by Compassion in Dying and its partners, and funded by the Big Lottery’s Silver Dreams Fund to run from July 2014 until October 2016.

Its aim was to support people aged over 50 to think about and plan their care in advance, helping to ensure they have the death that is right for them.

The project tried and tested new ways of engaging people and communities in planning for the end of life. It developed a service that placed the individual at the centre of their care decisions and supported them to express and record their wishes in a legally binding way. It also developed effective models of partnership working between health services and voluntary organisations, maximising the capacity of healthcare professionals by providing support to their patients to plan their care.

More details and registration information available via Eventbrite.


Seminar series: Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach

4 August 2016

1st & 2nd September 2016, University of Leeds

This research seminar series considers a range of European legislative responses to anticipatory decision-making, seeking to explore those responses within the practical contexts within which advance decision-making occurs. It links legal discourse with policy and practice discourses, and considers how a shared understanding of the purpose and potential for anticipatory decision-making may facilitate the drafting of advance decisions that both reflect the author’s intentions and are likely to be capable of implementation by healthcare professionals at a later date. It is generously funded by the Economic & Social Research Council (ESRC).

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The fourth seminar in the series will take place on 1st September 2016, focussing upon how advance decisions capable of implementation can be created and their role within the advance care planning context.

The following papers will be presented:

Dr. Kristian Pollock, University of Nottingham, “The implementation of Advance Care Planning in Community Health Care Settings.”

Prof. Sue Wilkinson & Celia Kitzinger, University of York, “Advance Decisions Assistance (ADA): Lessons from our first year.”

Rachel Hutchings, Compassion in Dying, “Preparing an Advance Decision – Learning from Compassion in Dying.”

Steve Bell, Motor Neurone Disease Association, “Advance decision-making, the MND context.”

This seminar is free, but there is a charge of £18 to cover the cost of lunch and refreshments payable on the day. The seminar will take place at Shibden Mill, Halifax. HX3 7UL.  Registration is required. To register for seminar four please click here.

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The fifth seminar in the series will take place on 2nd September 2016, focussing upon how advance decisions capable of implementation can be created and their role within the advance care planning context.

The following papers will be presented:

Dr Marike E. de Boer, VU University, Netherlands: “Advance directives in dementia care – from the perspective of people with dementia”

Dr Arnd May, Zentrum für Angewandte Ethik, Germany: “Ethical perspectives on Advance Directives – Stability of patients wishes”

For further information please see the series website here.

This seminar is free, but there is a charge of £18 to cover the cost of lunch and refreshments payable on the day. The seminar will take place at Shibden Mill, Halifax. HX3 7UL.  Registration is required, to register for seminar five please click here.

For further information please see the series website here.

 


Comment: Advance decisions to refuse treatment (ADRT) forms in dementia

16 July 2014
I’ve done a little research on advance decisions to refuse treatment (ADRT) forms in dementia for an upcoming BBC Radio 4 episode of Inside the ethics committee, to be broadcast on 31 July 2014 at 9am.
 
The Alzheimer’s Society have a form and a fact-sheet. Dementia Care also has some information on their website which includes a link to an Age UK factsheet.
 
Personally, I prefer the Compassion in Dying form (plus accompanying guidance notes) to the Alzheimer’s Society form. The main reason for this is that the triggering condition for the refusal (i.e. when the refusal is to become effective) is rather strange in the Alzheimer’s Society form. It’s when ‘the gravity of my condition/suffering is such that treatment seems to be causing distress beyond any possible benefit’. The goal of an ADRT is to refuse treatment which others would or might think is in your best interests (otherwise there’s little point – if everyone agrees the treatment is not in your best interests then it would not be lawful to give it under the Mental Capacity Act 2005). This triggering condition doesn’t seem to me to leave much (if any) scope for this. If the treatment causes distress beyond any possible benefit then it is hard to see how it could be given as it would not be in your best interests. The balancing of burdens against benefits is exactly what the courts (and the Mental Capacity Act Code of Practice) require in order to reach a decision on your best interests.
 
You can contrast this with the triggering conditions (there is a choice) in the Compassion in Dying form, the most relevant one of which is: ‘I suffer serious impairment of the mind or brain with little or no prospect of recovery together with a physical need for life-sustaining treatment/interventions’. Here it is quite possible that different people will have different views on whether life-sustaining treatment is in your best interests as the ADRT will be triggered (in dementia patients) once their condition constitutes a serious impairment and there is little or no prospect of recovery. So the ADRT will have a role to play.
 
Compassion in Dying also have a free phone line you can call to get help in filling out the form; details are provided within the form as well as on their website.
 
NB: Compassion in Dying has a relationship with Dignity in Dying. They are separate organisations but they work out of the same offices.