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Seminar 2: Legal and professional responses to advance decision-making I

Date: 14 September 2015, 9:00 - 15:00
Location: Liberty Building, University of Leeds

Presentations

Sharon Burton “Creating a supportive culture through professional regulation: a view from the UK”

Programme

This seminar will consider the regulation of advance decisions and professional responses thereto, together with a consideration of the impact of physician attitudes upon the implementation of advance decisions.

09.00
Registration and coffee.

09.30
Welcome, opening remarks and introductions.

09.45
Marion Albers “Advance Directives in Germany: Legal Regulation and Decision-Making Processes”
Followed by time for discussion and questions.

10.45
Coffee break

11.00
Louise Bramley, University of Nottingham “Negotiating care services with frailty: Implications for decision making and advance care planning”
Followed by time for discussion and questions.

12.00
Lunch.

13.00
Sharon Burton “Creating a supportive culture through professional regulation: a view from the UK”
Followed by time for discussion and questions.

14.00
Round table discussion, vignette: the brain-dead pregnant woman and the advance directive.

15.00
Closing remarks.

 

Speakers

Prof. Marion Albers

marion.albers@jura.uni-hamburg.de

Marion Albers is Professor of Public Law, Information and Communication Law, Health Law and Theory of Law at Hamburg University. She studied law, sociology and political science at the universities of Berlin and Bielefeld and received her Ph.D. in law with a thesis on crime prevention and provisions for prosecution. Her postdoctoral thesis (Habilitation) focused on questions of informational self-determination. She was assistant at the Federal Constitutional Court in Karlsruhe. From 2002 – 2005 she served as an expert in the Advisory Committee of the Bundestag (German Parliament) for Ethics and Law of Modern Health Care. From 2013 she has been the managing director of the Hamburg Center for Bio-Governance. Her main areas of research include Fundamental Rights, Information Law and Data Protection, Health Law and Biolaw, Police Law and Law of Intelligence Services, Theory and Sociology of Law.

Sharon Burton

SBURTON@gmc-uk.org

Sharon Burton is Head of Policy, for Standards and Ethics at the General Medical Council (GMC) which is the public authority responsible for regulating doctors in the UK.

The GMC Standards and Ethics section develops the regulatory standards that underpin professional practice, as set out in Good Medical Practice – the core values and principles –guidance on Consent, Confidentiality and other areas of ethical practice. Sharon is the lead expert on matters of consent; end of life treatment and care; decision making involving adults who lack mental capacity; and child and adult safeguarding issues. In this role, she has been a member of many national committees and steering groups, for example the Leadership Alliance for the Care of Dying People (2013-14) which published a report ‘One chance to get it right’ (2014; 2015) setting out a new vision for delivering personalised end of life care for patients and families in England.

Sharon has represented the GMC’s interests in leading court cases, including Burke v GMC [2004] and NM v Lanarkshire Health Board [2015] which set precedents for good practice in relation to a patient’s request for treatment and consent to treatment.

The Standards and Ethics section also publish learning resources and support tools that help to bring to life the principles and standards set out in the GMC guidance. In 2015, Sharon is working with GMC colleagues and external stakeholder organisations, to develop new projects to improve professional and public awareness of the GMC’s guidance. The Better Care for Older People campaign is one example of these new initiatives.

In relation to Europe, Sharon has a special interest in ethical codes and the laws governing ethical practice in countries outside the UK. She has presented at meetings of the European health professions regulatory bodies (Health Professions Crossing Borders and the Conference Europeen des Ordes); and she took part in the work that led up to the Council of Europe ‘guide on end of life decision making’.

Louise Bramley

Louise.Bramley@nottingham.ac.uk

Louise is a final year full time PhD student at the University of Nottingham and is currently writing her thesis for submission towards the end of the year. Her study focuses on hospitalised very frail older people perspectives of planning for end of life care and aims to examine this in relation to current frameworks and policy relating to advance care planning.

Clinically she is a highly experienced acute medical nurse with a special interest in frail older people and end of life care. She also works closely with colleagues at Nottingham University NHS Trust on developing the strategy for nursing and midwifery led research. Throughout her time as a PhD student she has continued to work clinically as well as fulfilling commitments to teaching both pre and post registration nurses whilst studying at the Sue Ryder Centre for Supportive and Palliative Care in Nottingham.

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

Sander Welie

Lawyer, Dutch National Foundation of Patient Advocates in Mental Health Care
S.Welie@pvp.nl

Abstracts

Advance Directives in Germany: Legal  Regulation and Decision-Making Processes.

Prof. Marion Albers

Awaiting abstract.

Negotiating care services with frailty: Implications for decision-making and advance care planning

Louise Bramley

Title: Negotiating care services with frailty: Implications for decision making and advance care panning.

Background: The Mental Capacity Act (MCA) provides a statutory framework for advance decision making and upholding patients autonomous choices regarding future care. Advance care planning was originally designed to promote autonomy and is commonly conceptualised as informing treatment and decisions in the event of a person’s loss of capacity. Older people with progressive frailty are at high risk of mortality, loss of capacity and increasing dependency on carers and care services. Little is known about whether frail older people regard advance care planning as relevant or what perspectives they have on decision-making for the future.

Aim: To investigate the perspectives of very frail older people and their carers on decision making and planning their future care.

Methods: The study adopted an exploratory case study design using qualitative interviews. Frail older people scoring five or more on the Clinical Frailty Scale and their nominated carers were recruited from hospital wards in a large University Hospital NHS Trust prior to discharge. They took part up to two interviews either in hospital or their homes. Within and cross case qualitative analysis was undertaken.

Results and discussion: 16 frail older people and 8 carers were recruited (17 female, 7 male age range 70-96). Many had difficulty imagining a future; as dependency grew, so did reliance on systems to support their needs. What once would have been deemed an unacceptable way of living became more the norm. Indeed, for many, the care system offers a lifeline that they would not be able to exist at home without.

This increasing dependency and reliance on care and care services has the potential to undermine the decision making capacity of frail older people. The care system appeared to offer little individual flexibility meaning that frail older people struggled to assert any control over day to day decisions and choices that others take for granted. For many, autonomous choice and decision making gave way to relationships, partnerships and negotiations that are commensurate with a more relational model of autonomy.

Conclusion: Lack of autonomy in day to day decision making has implications for ACP. The liberal ideal of autonomy as self-determination and self-interest presented by the legalistic and ideologically driven policy of ACP is out of step with the lived worlds of frail older people. For those facing increasing dependency on care and care services, frameworks that acknowledge a more relational approach when planning future care will be needed in order to engage this group of frail older people in ACP.

Creating a supportive culture through professional regulation: a view from the UK

Sharon Burton

In any society, healthcare system or professional culture where there is reluctance to honestly acknowledge the limits of medicine, embracing advance care planning (ACP) as an everyday standard of practice may be a challenge. To do ACP well, professionals, patients and their families need to be able to:

  • have honest conversations about the uncertainties and risks inherent in medical practice;
  • openly acknowledge their anxieties about future outcomes;
  • in some cases, confront the fears and resistance provoked in us when called on to engage with the realities of death and dying.

To enable these difficult conversations to take place, action is needed, at the national and local level, to create a supportive environment and culture in which ACP is valued and professionals are provided with the knowledge, skills and resources needed to communicate effectively and act with confidence and compassion as partners in their patients’ care. Professional regulators can play a pivotal role in promoting and embedding supportive cultures of this kind; if they are prepared to tackle the legal, institutional and social challenges that might be thrown up in their efforts to drive forward change in this area.

Recent experience by the General Medical Council (UK doctors’ professional regulator) offers some insights into the scope for regulators to positively influence professional practice and frontline services, not just hold professionals to account for unacceptable practice. This presentation considers the value and impact of the GMC’s work to promote ACP by:

  • publishing ethical guidance and defending it in court eg NM v Lanarkshire Health Board
  • setting related education and training standards, and quality assuring how these requirements are being met including within frontline services
  • collaborating with national organisations to create a unified voice around expected standards of practice
  • empowering patients and supporting patients’ organisations through information, advice, joint working and co-creation of resources