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Self-Binding Advance Directives

Supporting Advance Directives.

This work-stream focuses on Bipolar (sometimes known as ‘manic-depression’) and how a particular type of advance directive – a self-binding advance directive (SBD) – might help with planning for future periods of health crisis. An SBD would provide guidance for clinicians on dealing with future episodes of illness, based on service users’ own past experience. We are also working in partnership with Bipolar UK.

Background

Many people with Bipolar say that often, when becoming unwell, they lose the ability to recognise that they need treatment or hospital admission. Delays in treatment and/or admission can mean the individual is left to become more unwell and, in many cases, act in a way which is damaging to themselves. An SBD is an agreement, written by someone with Bipolar, with the help of their care team and, if they liked, their family/friends. It would explain what usually happens when they become unwell and what sort of treatment is generally helpful. Most importantly, it would aim to make sure that a person receives this treatment, even if they no longer have the ability to recognise that it is needed.

Although advance decisions or directives are already part of law in many countries and there is widespread support for their use amongst service users, clinicians and policy-makers, large gaps remain between policy and practice. In particular, there is minimal formal provision for service users to express advance requests for treatment. A key principle within our project is that service users’ personal experience of their own health management is an extremely valuable resource, which is currently being under-utilised.

Approach

Our group has developed a theoretical model of how an SBD might work and which takes into account key legal, ethical and clinical difficulties. The first phase of the project will involve gathering views from various sources exploring the practical and theoretical elements of putting together and implementing SBDs. This will include: conducting a survey amongst those affected by Bipolar with the UK; focus groups with various key stakeholders; a systematic literature review; a practice review.

In the second phase we will put SBDs into practice within several clinical teams in a London mental health service. We will provide training to the clinical teams, and monitor and support the study throughout. We will follow up participants throughout the trial period and conduct in-depth interviews with service users and clinicians at various stages. Our aim is to gain a detailed understanding of how SBDs might best be implemented within current clinical systems and gather information on key outcomes.

In keeping with the Mental Health and Justice project as a whole, this work-stream brings together clinical, legal and ethical perspectives. Alongside this, there will be a medical humanities component, which focuses on personhood and decision-making within bipolar and will use data from the study as well as other literature.

Expected Outcomes

There will be varied data from a 2-year implementation phase trialling SBDs in Bipolar. This will include qualitative data from participant interviews and the use of Outcome Mapping to produce in-depth understanding of how SBDs might most effectively be implemented within clinical practice. Other outputs include: a systematic literature review; a practice review; analysis of focus groups; analysis and dissemination of a large-scale survey; medical humanities scholarship on bipolar and personhood.

Most importantly, we hope that our study and related research will produce data which can inform policy change and clinical guidance in this area.

Research Output


Workstream members


Dr Gareth Owen
Dr Gareth Owen
Prinicipal Invesitgator

Clinical senior lecturer at the Institute of Psychiatry, Psychology and Neuroscience, KCL and honorary consultant psychiatrist. Gareth has expertise in mixed methods, psychiatric phenomenology, mental health, ethics and law as well as policy. He will lead on Work Stream 3 and Work Stream 6 and contribute widely across the research network.

Dr Tania Gergel
Dr Tania Gergel
Co-Lead

Senior Research Fellow in the Department of Psychological Medicine, KCL. Tania has expertise in mental health, ethics and law, with areas of interest including: advance decision-making and decision making-capacity; the ethics of coercion and leverage within psychiatry; personhood and mental disorder; and stigma. She will work as co-lead on all aspects of Work Stream 3, contribute widely across the research network and will co-chair the service user research advisory board for the collaboration.

Alex Ruck Keene
Alex Ruck Keene
Core Member

Barrister at 39 Essex Street Chambers and visiting research fellow at the Dickson Poon School of Law, KCL. Alex has expertise in mental health and capacity law, policy and guidelines. He will work as a senior legal researcher on Work Stream 6. He will also provide legal monitoring of advance directive implementation and legal analysis for Work Stream 3. He will contribute widely across the research network and lead on links with legal professional groups in the UK and New Zealand.

Larry Rifkin
Larry Rifkin
Core member

Consultant psychiatrist Lambeth Home Treatment Team South London and Maudsley NHS Foundation Trust (SLAM) and visiting senior lecturer, KCL. Larry is a senior clinician in SLAM with expertise in affective disorder and crisis services. He will be clinical lead for the NHS implementation phase of WS3 as detailed in the letter from the medical director of SLAM. He will contribute widely across the research network.

Dr Gareth Owen
Dr Gareth Owen
Prinicipal Invesitgator

Clinical senior lecturer at the Institute of Psychiatry, Psychology and Neuroscience, KCL and honorary consultant psychiatrist. Gareth has expertise in mixed methods, psychiatric phenomenology, mental health, ethics and law as well as policy. He will lead on Work Stream 3 and Work Stream 6 and contribute widely across the research network.

Dr Tania Gergel
Dr Tania Gergel
Co-Lead

Senior Research Fellow in the Department of Psychological Medicine, KCL. Tania has expertise in mental health, ethics and law, with areas of interest including: advance decision-making and decision making-capacity; the ethics of coercion and leverage within psychiatry; personhood and mental disorder; and stigma. She will work as co-lead on all aspects of Work Stream 3, contribute widely across the research network and will co-chair the service user research advisory board for the collaboration.

Alex Ruck Keene
Alex Ruck Keene
Core Member

Barrister at 39 Essex Street Chambers and visiting research fellow at the Dickson Poon School of Law, KCL. Alex has expertise in mental health and capacity law, policy and guidelines. He will work as a senior legal researcher on Work Stream 6. He will also provide legal monitoring of advance directive implementation and legal analysis for Work Stream 3. He will contribute widely across the research network and lead on links with legal professional groups in the UK and New Zealand.

Susan Hudson
Susan Hudson
Research Network

Chief executive Bipolar UK. Susan runs the national charity dedicated to supporting individuals with Bipolar. She will help with research within Work Stream 3 particularly service user communications and guidelines for service users and carers.

Dr Lucy Stephenson
Dr Lucy Stephenson
Clinical Research Fellow

Lucy is an SpR in General Adult Psychiatry and Medical Psychotherapy on the South London and the Maudsley Training Scheme. She has a background in Philosophy of Psychiatry and is currently a Clinical Research Associate with the Mental Health and Justice project.

Larry Rifkin
Larry Rifkin
Core member

Consultant psychiatrist Lambeth Home Treatment Team South London and Maudsley NHS Foundation Trust (SLAM) and visiting senior lecturer, KCL. Larry is a senior clinician in SLAM with expertise in affective disorder and crisis services. He will be clinical lead for the NHS implementation phase of WS3 as detailed in the letter from the medical director of SLAM. He will contribute widely across the research network.

Susan Hudson
Susan Hudson
Research Network

Chief executive Bipolar UK. Susan runs the national charity dedicated to supporting individuals with Bipolar. She will help with research within Work Stream 3 particularly service user communications and guidelines for service users and carers.

Dr Lucy Stephenson
Dr Lucy Stephenson
Clinical Research Fellow

Lucy is an SpR in General Adult Psychiatry and Medical Psychotherapy on the South London and the Maudsley Training Scheme. She has a background in Philosophy of Psychiatry and is currently a Clinical Research Associate with the Mental Health and Justice project.