Seminar 1: Advance decision-making – the context, the promise and the pitfalls
Date: 24 March 2015, 9:30 - 16:00
Location: Room 2.46, Liberty Building, University of Leeds
Presentations
Participants - who we are and our interests in advance decision-making
Professor Jean McHale “Advance decisions and the MCA 2005: Just where did it all go wrong?”
Professor William Molloy “Let Me Decide: an update on recent research”
Programme
This seminar will consider the contexts in which advance decision-making takes place, considering advance decisions relating to both physical and mental health; the ethical principles implicated in advance decision-making and the practical context within which ADs fall to be implemented.
09.30
Registration and coffee.
10.00
Welcome, opening remarks and introductions.
10.30
Jean McHale “Advance decisions and the MCA 2005: Just where did it all go wrong?”
Followed by time for discussion and questions.
11.20
Dianne Gove “Practical and ethical issues related to the use of advance directives by people with dementia”
Followed by time for discussion and questions.
12.30
Lunch.
13.15
William Molloy “Let Me Decide: an update on recent research”
Followed by time for discussion and questions.
14.15
Coffee
14.30
Celia Kitzinger & Sue Wilkinson “Writing an Advance Decision: (How) Can We Facilitate the Process?”
Followed by time for discussion and questions.
15.30
Closing remarks.
16.00
Close
Speakers
Prof. Jean McHale
Jean McHale is Professor of Health Care Law at the University of Birmingham and Director of the Centre for Health Law, Science and Policy. She is the author and co-editor of a number of books an articles in this area including Health Care Law Text and Materials ((2nd ed) Sweet and Maxwell, 2007), Principles of Medical Law (Oxford: OUP, 2010) co-edited with Grubb and Laing and Principles of Mental Health Law Science and Policy (Oxford, OUP, 2010) ( co-edited with Gostin, Bartlett, Fennell and McKay. Her new books European Health Law, Themes and Implications (Cambridge: CUP), with Hervey and the Routledge Handbook of Complementary and Alternative Medicine, Perspectives from Social Science and Law , co-edited with Gale, will be published in 2015.
Prof. David William Molloy
The Centre for Gerontology and Rehabilitation (CGR), School of Medicine, U.C.C. is led by Prof David William Molloy, Geriatrician and Chair in Clinical Gerontology, and is based in St Finbarr’s Hospital. The Centre was established in September 2010 is funded by Atlantic Philanthropies with a specific remit to establish interdisciplinary teaching and learning in Gerontology, Rehabilitation and End of Life Care in UCC and to raise the standard of care of the elderly in the South of Ireland. Prof Molloy received his medical degree from University College Cork in 1977 and became a member of the Royal College of Physicians Ireland (RCPI) in 1980. He then moved to Canada where he was appointed Professor of Medicine at McMaster University (1988) and St. Peter’s McMaster Chair in Aging (2002) where he remained until 2010 when he returned to Ireland to take up his position as Chair of Clinical Gerontology. Vastly experienced in the area of cognitive impairment, dementia and Alzheimer’s disease, Prof Molloy has a proven track record in successful grant applications, co-ordinating multi-centre studies and recruiting large numbers of patients for research. Since his arrival in U.C.C., the CGR has secured funding from a number of sources including the Health Research Board (HRB) and the Irish Hospice Foundation (IHF). Prof Molloy is a co-investigator in NILVAD and PERSSILAA (EU-FP7 funded trials). A recognised expert on capacity he has published over 140 peer-reviewed articles and several books. To promote the autonomy of the elderly, he wrote the advance health care directive, “Let Me Decide”. It has had 25 editions and is published in several languages and has recently been published in Ireland for the first time.
Dr Dianne Gove
Dianne.Gove@alzheimer-europe.org
Dr Dianne Gove is currently Director for Projects at Alzheimer Europe in Luxembourg. After completing an Honours Degree in Psychology, she obtained MAs in Education and Psychoanalysis and then trained as an analytical Gestalt therapist. In 2013, she was awarded a PhD from the University of Bradford for her research exploring GPs' perceptions of dementia and how these relate to stigma and timely diagnosis. She has worked on a wide range of topics covering care, legislation, advance directives and social support. In the last few years, she has chaired working groups which have produced ethical guidelines on assistive technology, dementia research, restrictions of freedom and the portrayal of dementia, as well as practical guidelines on improving the continence care for people with dementia living at home. The ethics working group is currently writing a guide for professional carers of people with dementia faced with ethical dilemmas.
Prof. Celia Kitzinger
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 http://www.healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/topics.
Prof. Sue Wilkinson
Sue Wilkinson is a Professor in the Department of Social Sciences at Loughborough University. She has worked with Compassion in Dying and Dementia UK to evaluate their telephone helpline services, and is a befriender for Friends at the End (FATE).
Participants
Marion Albers
Lehrstuhl für Öffentliches Recht, Informations- und Kommunikationsrecht, Gesundheitsrecht und Rechtstheorie, Fakultät für Rechtswissenschaft, Universität Hamburg
marion.albers@jura.uni-hamburg.de
Jacqueline Atkinson
Professor of Mental Health Policy at the University of Glasgow
Jacqueline.Atkinson@glasgow.ac.uk
Peter Bartlett
Nottinghamshire Healthcare NHS Trust Professor of Mental Health Law, University of Nottingham
Peter.Bartlett@nottingham.ac.uk
Marike de Boer
Researcher, EMGO Institute for Health and Care Research, VU University Medical Center.
m.deboer@vumc.nl
Louise Bramley
PhD student, University of Nottingham
Louise.Bramley@nottingham.ac.uk
Sharon Burton
GMC Head of Policy, Standards and Ethics
sburton@gmc-uk.org
Martin Eisemann
Professor of Psychology University of Tromsø
martin.eisemann@uit.no
Chris Gastmans
Professor of Medical Ethics President, European Association of Centres of Medical Ethics KU Leuven
Chris.Gastmans@med.kuleuven.be
Samantha Halliday
Associate Professor of Law, University of Leeds
S.Halliday@leeds.ac.uk
Gillian Hundt
Professor of Social Science in Health, University of Warwick
Gillian.Hundt@warwick.ac.uk
Kirstin Jalink
PhD student, VU University Medical Center
k.jalink@vumc.nl
Arnd May
Zentrum für Angewandte Ethik
may@EthikZentrum.de
Alex Pearl
PhD student, School of Law, University of Leeds
A.Pearl@leeds.ac.uk
Andrea Prescott
Court of Protection and Community Care Solicitor Cartwright King Solicitors, Leeds.
Andrea.prescott@cartwrightking.co.uk
Jörg Richter
Professor of psychology, Universität Rostock, SL University of Hull
j.richter@hull.ac.uk
Kevin de Sabbata
PhD student, School of Law, University of Leeds
lwkds@leeds.ac.uk
Abstracts
Advance decisions and the MCA 2005: Just where did it all go wrong?
Prof. Jean McHale
The Mental Capacity Act 2005 introduced a statutory framework for advance decisions. For the first time patients could make autonomous advance decisions that they had a real hope of being valid and binding and health care practitioners too could act on the basis of these with the real fear of subsequent litigation or criminal prosecution radically reduced. However fast forward to 2014 and the House of Lords Select Committee Report on the Mental Capacity Act. This presents a worrying picture of a low take up of advance decisions and lack of awareness of their availability and applicability by the general public, patients and health care practitioners alike. So what exactly happened and is the MCA itself on this issue fit for purpose? This paper charts the development of advance decisions in England from the rise of the living will" produced by the Terence Higgins Trust and Kings College London, the Law Commission Report on Mental Incapacity and the legislation itself and the aftermath. It asks where did things go wrong and where should we go in relation to the statutory provisions concerning advance decisions in the future.
Let Me Decide: an update on recent research
Prof. David William Molloy
Background: The ‘Let Me Decide’ Advance Care Planning (LMD-ACP) programme offers a structured approach to End-of-Life (EoL) care planning in long-term care for residents with and without capacity to complete an advance care directive/plan. The programme was implemented in three homes in the South of Ireland, with a view to improving quality of care at end of life.
Aim: To evaluate the systematic implementation of the LMD-ACP programme in three long-term care sites (n residents=290). Outcomes measured included staff knowledge, barriers to ACP, up take of ACP among residents, acute hospital utilisation and quality of death and dying (from family and staff perspective).
Methods: Mixed method evaluation of the impact of the programme was conducted using a before-after study design. Focus groups were conducted with 15 Clinical Nurse Managers and two Directors of Nursing where the programme had been implemented. A semi-structured topic guide was used to direct questions that addressed implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Quantitative measures were used to collect data on all other outcome variables. As part of the pre-implementation phase 163 nursing and medical staff were asked to complete questionnaires on their attitudes to ACDs and ACP, perceived barriers to implementing ACP in their everyday work, and their palliative care learning needs. Results from the palliative care educational needs survey were used to fine tune the palliative care educational component of the intervention. A post-implementation survey of 279 Nursing Home Staff was also conducted on attitudes, barriers and learning needs. Between the before and after period 123 relatives of deceased residents completed the Quality of Death and Dying (QODD) questionnaire and over 140 charts of those deceased were also reviewed.
Results: The program has been well received by both residents and their families. Following implementation, over 50% of residents had some form of end-of-life care plan in place (advance care directives; advance care plans or end-of-life care plans for those with diminished capacity). Despite the high prevalence of cognitive impairment, at least 10% of residents had capacity to complete their own advance care directive. Of 70 residents who died during the study period, 84% had an end-of-life care plan in place (12% of these were advance care directives). Family satisfaction remained high. Learning needs of staff centered mostly on pain and symptom management. Hospital transfers was reduced by 57% across the 3 sites. Key benefits of the programme included enhanced communication, changes in the care culture, promoting preference-based care and avoiding crisis decision making. Establishing capacity among residents and indecision were among the main challenges reported by staff.
Conclusion: In terms of ensuring the sustainability and dissemination of the program to a national and potentially international level, various recommendations are made. These include; education/training of staff on advance care planning and palliative care approach, MDT approach to end of life care, documentation of conversations with residents & family on wishes and preferences, external support to nursing homes to implement these programs, and introduction of the concept of advance care planning on admission to long term care.
While delivering advance care planning to elderly LTC residents is both challenging and time consuming, this appears to be offset by the benefits. The LMD-ACP programme offers a systematic approach to the implementation of ACP in residential aged care settings that enhances end of life, ensures a high standard of care in dying and death and reduces inappropriate hospital transfers.
Practical and ethical issues related to the use of advance directives by people with dementia
Dr Dianne Gove
Some time ago, Alzheimer Europe produced a report, a sample advance directive and position statement/recommendations about advance directives in the context of Alzheimer's disease and other forms of dementia. These documents were the result of discussions carried out in a multidisciplinary group, comprised of experts in the field of psychiatry, neurology, pharmacology, psychology, law and ethics. The recommendations were recently revisited and developed in the context of the EC-funded ALCOVE project with the participation of Alzheimer Europe and other relevant experts in the field. This body of work focused mainly on legal and practical issues. Throughout its recent work on ethical issues of relevance to the lives of people with dementia, Alzheimer Europe has also explored the ethical issues linked to the use and interpretation of advance directives in the context of dementia care, research and treatment. This presentation will explore some of the key practical and ethical issues linked to the use of advance directives by people with dementia.
Writing an Advance Decision: (How) Can We Facilitate the Process?
Prof. Celia Kitzinger and Prof. Sue Wilkinson
The first steps in writing an Advance Decision are (a) overcoming reluctance to do so, and (b) translating one’s end-of-life wishes into a written document that accurately represents them. Over the past two years, we have been working with members of the public to encourage and support them through these first steps – resulting in over 100 completed ADs to date. We have also compiled a collection of completed ADs, together with author commentaries on their specific content; and have helped two organisations – Compassion in Dying and Friends at the End – to revise their AD templates to make them more accessible. In this presentation, we will outline the scope of this work, and reflect on some of our successes – and failures.