Preparing and implementing advance decisions

This seminar will focus upon how advance decisions capable of implementation can be created and their role within the advance care planning context.

Welcome, opening remarks and introductions.

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

Followed by time for discussion and questions.


Sue Wilkinson & Celia Kitzinger, University of York “Advance Decisions Assistance (ADA): Lessons from our first year”
Followed by time for discussion and questions.

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

Followed by time for discussion and questions.


Coffee break


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

Followed by time for discussion and questions.


Round table discussion of the scenario in which a person’s actions or statements (subsequent to drafting the advance decision) may be taken to invalidate that decision. This is particularly pertinent given the obiter comments of Keehan J in Re QQ [2016] EWCOP 22 (, where he said at [4]:
“I do not accept that when QQ made an advance decision in August 2015 in relation to her treatment that she was capacitous and therefore that it is a valid or lawful advance decision. If I were to be wrong on that issue, I accept Mr Wenban-Smith’s submission that the contrary views that QQ has recently and fleetingly expressed from time to time, namely that she would accept treatment, would not of themselves invalidate, pursuant to s 25 ss 2 (c) of the Mental Capacity Act 2005, what would otherwise have been a valid advance decision.”

Closing remarks.

The implementation of Advance Care Planning in Community Health Care Settings

Kristian Pollock, University of Nottingham

In recent years the focus of anticipatory planning has shifted from the attempt to control future care decisions and outcomes through legally binding directives to refuse treatment to a more informal process of discussion and reflection about goals of care. Although such Advance Care Planning (ACP) can occur at any time, UK policy and professional practice centres on care and decision making in the last year of life. ACP is widely regarded as a key component in the effort to improve the experience of death and dying for patients and their families. It is framed within a discourse of promoting ‘choice’, ‘autonomy’ and ’empowerment’ on the one hand, and an urgent need to contain the costs of health care on the other. A strong ideological commitment to precedent autonomy offers a means of respecting individual integrity and personal dignity, especially as the spectre of prolonged infirmity and mental and physical incapacity confronts the ageing populations of the modern world. Nevertheless, the relative clarity of policy and principle regarding ACP is not matched by current evidence regarding patient preferences or professional practice. This presentation will report findings from a recently completed UK study of Advance Care Planning (ACP) in community care settings as a basis for critically appraising aspects of current policy and professional practice relating to end of life care and the assumed desirability and feasibility of forward planning. It points to the current gap between policy and evidence and the ideological effort to normalise a cultural script about the appropriate anticipation and management of death and dying which has little resonance among many patients or the wider population.

About Kristian

Kristian is a Principal Research Fellow in NCARE (Nottingham Centre for the Advancement of Research into Supportive, Palliative and End of Life Care), based in the School of Health Sciences at Nottingham University ( She has carried qualitative research in a wide range of health service settings, often involving sensitive topics and vulnerable populations. She has recently completed a study of how health professionals and patients broach the topic of Advance Care Planning (ACP) in community care settings ( and is currently involved in the ACTION trial – a study of the effectiveness of a structured ACP intervention in improving the lives and patients of patients with advanced cancer in six European countries (

Advance Decisions Assistance (ADA): Lessons from our first year

Sue Wilkinson & Celia Kitzinger, University of York

In June 2015 we set up a charity – Advance Decisions Assistance (ADA) – to support the work we had already been doing informally for a couple of years (  ADA’s aims are to raise public awareness of ADs and help people write them; and to provide professional education and training about ADs.  Over the past year, we have trained GPs, ambulance services, advocates, psychologists, care home staff, hospice staff and an Acquired Brain Injury team, as well as running information and awareness sessions for interest groups (e.g. Humanists, Quakers, Right-to-die activists) and the general public (e.g. at ‘50+’ and ‘Before I Die’ festivals).  We have also run a series of AD-writing ‘clinics’ as well as helping some 200+ individuals to write ADs in one-to-one sessions.  This presentation focuses on some of the key things we have learnt from these activities.  These include: common misunderstandings and misperceptions among healthcare professionals; structural obstacles to the likely effectiveness of ADs; and how lay people approach end-of-life decision-making as practical ethicists.

About Sue

Sue Wilkinson is a Chartered Psychologist and Honorary Professor in the Department of Sociology, University of York. Her main research interests are in conversation analysis, helpline interaction, and end-of-life issues. In 2015, she co-founded the charity, Advance Decisions Assistance (ADA), to raise awareness of Advance Decisions, help people write them, and provide training for healthcare professionals.

About Celia

Celia Kitzinger is a Professor in the Department of Sociology at the University of York, and Co-Director of the York-Cardiff Chronic Disorders of Consciousness Research Centre. She has recently produced an online multi-media resource on family experiences of the vegetative and minimally conscious states: see

Preparing an Advance Decision – Learning from Compassion in Dying

Rachel Hutchings, Compassion in Dying

Our work has consistently shown that with the right information and support, planning ahead by making an Advance Decision can have a huge impact on a person’s ability to take and stay in control of their future medical treatment. Not only does it give people peace of mind in the present, but research has shown that where a person’s wishes for the end of life are recorded, they are 41% more likely to be judged by their loved ones to have died well.

Unfortunately, the process of making an Advance Decision is not always straightforward and much of our work is dedicated to informing and supporting people around how they can prepare an Advance Decision and make sure that it will be implemented once they’ve lost capacity. This includes developing our own Advance Decision form, which is available in paper and online at

We have two key services – the Information Line and My Life, My Decision, a big lottery funded project that runs in partnership with local Age UKs. This presentation will provide an insight into how these services support people to express their wishes in an Advance Decision and some of the benefits as well as difficulties that are associated with completing them. The presentation will also cover some of the barriers that we have identified that prevent people from engaging with Advance Decision making and what needs to be done at a local and national level to address this.

About Rachel

Rachel is the Legal and Policy Support Officer at Compassion in Dying and is responsible for making sure that learning from Compassion in Dying’s services is used to influence broader end of life and healthcare policy. She was previously based in the information team, where she oversaw the operation of the Information Line, developed publications and delivered presentations on how people can plan ahead in advance of a loss of capacity.

Prior to joining Compassion in Dying Rachel worked in medical law and policy at both the Alzheimer’s Society and Macmillan Cancer Support. She has a Master’s in international human rights law where she focussed on capacity, autonomy and deprivation of liberty in healthcare, both in the UK and internationally.

Advance decision-making, the Motor Neurone Disease context

Steve Bell, Motor Neurone Disease Association

The recent Improving Motor Neurone Disease (MND) Care survey was sent out to circa 2000 people living with MND, and 919 responded. Two thirds of respondents chose to answer questions relating to end of life care and in particular about advanced directives and advanced care planning.

26% of those responding indicated that they had not been offered any information or discussion about choices and options at the end of life. A further 33% indicated that they had not been given the opportunity to discuss end of life issues with any care professionals.

Respondents were asked to describe what having control at end of life meant to them – 63% indicated that they would want to decide for themselves when the time was right to withdraw treatment that helps sustain life, such as withdrawal of non-invasive ventilation (NIV), with a further 61% indicating that they would want to decide when the time was right to die.

We asked specifically about making an Advanced Directive. And the results of that question will be presented at the seminar. It is notable though that 19% – so nearly one fifth of respondents did not know what an Advanced Directive was or what it meant before reading the question.

86 % indicated that they would know how to change an AD if they chose to do so, but a further 14% stated that they did not – worrying!

In conclusion, ADs are certainly in use in the world of MND. More needs to be done to publicise their use and effectiveness. We also need to consider how to ensure capacity in those with MND who may have a degree of cognitive impairment, and the up to 15% who will also have an associated Fronto-Temporal Dementia.

About Steve

Steve qualified as a Chartered Physiotherapist in 1980 from the Sheffield school of Physiotherapy. After developing a specialism in working with adults with a learning disability he was appointed to develop community services for the south Manchester health Authority.

Steve left clinical practice in 1990 to take up a post as a CEO of a charity providing residential care, day care and sheltered living for adults with Autism and Asperger’s syndrome. During this time, he completed his MBA at Sheffield Hallam University, focussing on the change for Charities in moving from grant aid to the contract culture that we see today.

Steve moved to work for Goldsborough Home Care, a subsidiary of BUPA as Operations Director and then Director with responsibility for contracts and commissioning, covering the whole of England and Wales.

Steve joined the Motor Neurone Disease Association in 2002, as its first Regional Manager, covering the north of England. In 2009, Steve was appointed as Director of Care, with responsibility for the North of England, Wales, Northern Ireland and Isle of Man. Steve is a Director and Treasurer of the International Alliance of ALS/MND Associations and Chairs the annual Allied Professionals Forum, which meets during the annual International Symposium on MND/ALS.

Steve has a key interest in End of Life care and also cognitive impairment and Fronto-temporal dementia for those living with MND.


Marion Albers

Lehrstuhl für Öffentliches Recht, Informations- und Kommunikationsrecht, Gesundheitsrecht und Rechtstheorie, Fakultät für Rechtswissenschaft, Universität Hamburg

Jacqueline Atkinson

Professor of Mental Health Policy at the University of Glasgow

Peter Bartlett

Nottinghamshire Healthcare NHS Trust Professor of Mental Health Law, University of Nottingham

Marike de Boer

Researcher, EMGO Institute for Health and Care Research, VU University Medical Center.

Louise Bramley

PhD student, University of Nottingham

Sharon Burton

GMC Head of Policy, Standards and Ethics

Martin Eisemann

Professor of Psychology University of Tromsø

Chris Gastmans

Professor of Medical Ethics President, European Association of Centres of Medical Ethics KU Leuven

Samantha Halliday

Associate Professor of Law, University of Leeds

Gillian Hundt

Professor of Social Science in Health, University of Warwick

Kirstin Jalink

PhD student, VU University Medical Center

Arnd May

Zentrum für Angewandte Ethik

Alex Pearl

PhD student, School of Law, University of Leeds

Andrea Prescott

Court of Protection and Community Care Solicitor Cartwright King Solicitors, Leeds.

Jörg Richter

Professor of psychology, Universität Rostock, SL University of Hull

Kevin de Sabbata

PhD student, School of Law, University of Leeds

Sander Welie

Lawyer, Dutch National Foundation of Patient Advocates in Mental Health Care