Advance Decisions: Informing implementation strategies through interdisciplinary and cross-national dialogue
Lead Research Organisation:
University of York
Department Name: Sociology
Abstract
An Advance Decision is a document that allows people to set out their wishes and preferences for medical treatment in advance, in the event that they later become unable to express those wishes (e.g. because they are in a coma, or have dementia). They were recently given statutory legal force in the Mental Capacity Act 2005, which came into force in 2007. Advance refusals of treatment (e.g. refusing a ventilator, or artificial nutrition and hydration) are legally binding on doctors in England and Wales and are actively promoted by many key charities, including Age UK, Macmillan Cancer Support, the Motor Neurone Disease Association, Marie Curie Cancer Care and most hospices. This new legislation is in part a response to the widely recognised problem that people are not getting the kind of death they want (e.g. home rather than hospital) and to the acknowledged problem of over-treatment at the end of life (Leadbeater & Garber, 2010). There is evidence that increased uptake of ADs is likely to result in people's choices about the kind of treatments they do and do not want to receive at the end of life being better respected (Satherley & Hehir, 2010).
However, uptake of ADs has been low: survey polls show that uptake ranges from about 3% to 8% in the general population. There is virtually no research in the UK addressing this issue. This is a timely seminar series that will address some of the issues arising five years after the (2007) implementation of the Mental Capacity Act 2005.
The aim of this seminar series is to address the problem with uptake of ADs in the UK from a trans-national and interdisciplinary perspective that uses lessons learnt from the much longer history of ADs in the USA and brings together people working in charities concerned with promoting ADs, academics with expertise across a range of disciplines including law, medical, sociology/psychology and bioethics (including a leading bioethicist from the USA), and practising doctors.
The main objectives are:
(i) to develop our understandings of what inhibits people in the UK from planning ahead for their medical care in advance of a crisis
(ii) to work out the best ways of encouraging uptake of ADs
(iii) to identify new research agendas arising out of the introduction of ADs into statutory law in the UK
(iv) to collaborate on the production of an edited book addressing these issues.
We will also inform a wider public discussion of ADs by creating an online forum recording the findings of the symposium (e.g. posting speaker slides, and a collection of completed ADs with commentary) and by working with a local community arts center to show films followed by discussion sessions around this issue.
The seminar series will benefit the participants for whom it will be an intensive interdisciplinary and academic-practitioner learning experience; the practice-settings in which many of them also work (e.g. in law, medicine and palliative care) and in relation to which they sit on influential committees and working parties drawing up guidelines for practice; the charities and hospices aiming to increase the use of ADs - (representatives from these will also be seminar participants); and other academic researchers in the field of end-of-life decision making and informed choice in medical care.
However, uptake of ADs has been low: survey polls show that uptake ranges from about 3% to 8% in the general population. There is virtually no research in the UK addressing this issue. This is a timely seminar series that will address some of the issues arising five years after the (2007) implementation of the Mental Capacity Act 2005.
The aim of this seminar series is to address the problem with uptake of ADs in the UK from a trans-national and interdisciplinary perspective that uses lessons learnt from the much longer history of ADs in the USA and brings together people working in charities concerned with promoting ADs, academics with expertise across a range of disciplines including law, medical, sociology/psychology and bioethics (including a leading bioethicist from the USA), and practising doctors.
The main objectives are:
(i) to develop our understandings of what inhibits people in the UK from planning ahead for their medical care in advance of a crisis
(ii) to work out the best ways of encouraging uptake of ADs
(iii) to identify new research agendas arising out of the introduction of ADs into statutory law in the UK
(iv) to collaborate on the production of an edited book addressing these issues.
We will also inform a wider public discussion of ADs by creating an online forum recording the findings of the symposium (e.g. posting speaker slides, and a collection of completed ADs with commentary) and by working with a local community arts center to show films followed by discussion sessions around this issue.
The seminar series will benefit the participants for whom it will be an intensive interdisciplinary and academic-practitioner learning experience; the practice-settings in which many of them also work (e.g. in law, medicine and palliative care) and in relation to which they sit on influential committees and working parties drawing up guidelines for practice; the charities and hospices aiming to increase the use of ADs - (representatives from these will also be seminar participants); and other academic researchers in the field of end-of-life decision making and informed choice in medical care.
Planned Impact
Academic beneficiaries
The immediate beneficiaries will be the participants in the seminar series, most of whom are academics, who will have the opportunity to expand their own evidence-base and to network with other leading experts in the area. Four PhD students will benefit from the opportunity to contribute (a crucial capacity-building exercise). The wider academic community will have access to a publicly available website on which we will post powerpoint presentations and summaries of each seminar meeting, with additional information (reading lists, links to resources, expert commentary on completed ADs etc) as appropriate. They will also benefit from our talks and publications. The academic impacts thus involve: developing expertise and knowledge on ADs; training new researchers; fostering academic collaboration and exchange; and journal publications in both academic and professional journals, talks at national and international conferences, and an edited book.
Practitioners in medicine, law, palliative care and the third sector
The seminar series will reach practitioners via their inclusion in the design and participation of the seminar series itself. One of the co-applicants works as a GP one day a week in an inner-city GP practice (AS) and the other works as a solicitor (on human rights issues, specialising in the Mental Capacity Act) at Scott-Moncrieff & Associates LLP, London, and also trains lawyers and clinicians about the application of the MCA in practice settings (LC). We have deliberately selected participants with direct 'real world' involvements outside of academia. Two participants are employed full-time in the third sector, in charities directly working on end-of-life issues (PS, with Compassion in Dying; and a hospice/palliative care worker and trainer, tbc); one is a full time consultant in intensive care and anaesthesia. These participants will be in a unique position to take knowledge and ideas developed in the seminars directly into their own workplaces. Additionally, many participants have involvments in training (e.g. medical students, JK, CK, AS; nurses, JS), and serve on working parties and committees producing guidelines and recommendations for practice (e.g. Royal College of Physicians working party rewriting guidelines on the management of the vegetative state (JK); the Scientific Committee member of the European Association for Palliative Care (JS)) so practitioners will indirectly benefit from the knowledge and experience gained in the seminar series and contributed in these contexts.
The general public
By developing our knowledge-base (across disciplines and nations), and by working collaboratively to solve problems in AD uptake, the overall aim of the seminar series is to develop knowledge about how to encourage uptake of ADs, how to ensure that they are written in such a way that they are applicable to the circumstances to which their authors intend, and how to ensure that clinicians develop confidence in interpreting and implementing ADs appropriately. To the extent that our seminar series and the projects that arise from it (i.e. future research projects and collaborations) contribute to achieving those aims, the general public will benefit in that (for those who wish it) their personal autonomy and right to make their own treatment choices will be better protected. The evidence from research in the USA is that this in turn will lead to a better end-of-life experience for the patient and for his/her family. (One benefit of this for the NHS is likely to be fewer complaints about end-of-life care - currently one of the key targets of formal NHS complaints.) End-of-life decision making in the twenty first century, with an aging population and with ever-increasing technologies for prolonging the lifespan in people with very severe impairments (e.g. permanent vegetative state, dementia), is of key and direct relevance for public health and wellbeing.
The immediate beneficiaries will be the participants in the seminar series, most of whom are academics, who will have the opportunity to expand their own evidence-base and to network with other leading experts in the area. Four PhD students will benefit from the opportunity to contribute (a crucial capacity-building exercise). The wider academic community will have access to a publicly available website on which we will post powerpoint presentations and summaries of each seminar meeting, with additional information (reading lists, links to resources, expert commentary on completed ADs etc) as appropriate. They will also benefit from our talks and publications. The academic impacts thus involve: developing expertise and knowledge on ADs; training new researchers; fostering academic collaboration and exchange; and journal publications in both academic and professional journals, talks at national and international conferences, and an edited book.
Practitioners in medicine, law, palliative care and the third sector
The seminar series will reach practitioners via their inclusion in the design and participation of the seminar series itself. One of the co-applicants works as a GP one day a week in an inner-city GP practice (AS) and the other works as a solicitor (on human rights issues, specialising in the Mental Capacity Act) at Scott-Moncrieff & Associates LLP, London, and also trains lawyers and clinicians about the application of the MCA in practice settings (LC). We have deliberately selected participants with direct 'real world' involvements outside of academia. Two participants are employed full-time in the third sector, in charities directly working on end-of-life issues (PS, with Compassion in Dying; and a hospice/palliative care worker and trainer, tbc); one is a full time consultant in intensive care and anaesthesia. These participants will be in a unique position to take knowledge and ideas developed in the seminars directly into their own workplaces. Additionally, many participants have involvments in training (e.g. medical students, JK, CK, AS; nurses, JS), and serve on working parties and committees producing guidelines and recommendations for practice (e.g. Royal College of Physicians working party rewriting guidelines on the management of the vegetative state (JK); the Scientific Committee member of the European Association for Palliative Care (JS)) so practitioners will indirectly benefit from the knowledge and experience gained in the seminar series and contributed in these contexts.
The general public
By developing our knowledge-base (across disciplines and nations), and by working collaboratively to solve problems in AD uptake, the overall aim of the seminar series is to develop knowledge about how to encourage uptake of ADs, how to ensure that they are written in such a way that they are applicable to the circumstances to which their authors intend, and how to ensure that clinicians develop confidence in interpreting and implementing ADs appropriately. To the extent that our seminar series and the projects that arise from it (i.e. future research projects and collaborations) contribute to achieving those aims, the general public will benefit in that (for those who wish it) their personal autonomy and right to make their own treatment choices will be better protected. The evidence from research in the USA is that this in turn will lead to a better end-of-life experience for the patient and for his/her family. (One benefit of this for the NHS is likely to be fewer complaints about end-of-life care - currently one of the key targets of formal NHS complaints.) End-of-life decision making in the twenty first century, with an aging population and with ever-increasing technologies for prolonging the lifespan in people with very severe impairments (e.g. permanent vegetative state, dementia), is of key and direct relevance for public health and wellbeing.
Publications
Kitzinger C
Advance Decisions: Theory and Practice
Kitzinger C
(2014)
Advance Decisions: Do they work in practice?
in Elder Law Journal
Kitzinger, C.
(2015)
A matter of life and death
in The Psychologist
| Description | • We ran a series of three seminars (York, October 2012; Cardiff, May 2013; Warwick, December 2013) focusing intensively on sharing expertise about Advance Decisions (ADs) across disciplines, internationally, and between academics and practitioners in different fields, involving a total of nearly 40 people, including 5 PhD students. For information about the seminars (including downloadable pdfs of slides) see: http://www.york.ac.uk/sociology/research/current-research/kitzinger-advance-decisions/ • Two articles have already been published and two books are under way (see 'Publications') • We have identified some avenues for further research in relation to promoting ADs (a) via GP practices - we have done a mini-feasibility study of this (see "Other Outputs") and (b) via Dementia clinics. Key findings are: 1. Reasons for lack of uptake of ADs relate to the broader social attitude to death and dying and an avoidance of the topic. It is particularly apparent from work in the US (represented at our seminars by Nancy Berlinger (Hastings Centre) that creating a context for talking about death promotes AD uptake. 2. Partly because it can be difficult for people to talk about death when they are confronting illness or disease, AD promotion should target the young and the healthy, not only the old and the sick. GP practices offer an opportunity for this (e.g. 'Flu Saturdays'). 3. Early dementia diagnoses offer an opportunity for individuals who still have capacity to complete ADs in relation to a known illness trajectory and before they lose capacity, but this opportunity is often missed. 4. AD templates are often confusing and use complex legal and/or medical terminology that sometimes deter people from completing ADs. 5. We have learnt from our own experience in providing support and information for people writing ADs how time-consuming and demanding this can be, and something of the range of issues (both personal/emotional and practical) that people confront. 6. Our findings have led to an invitation to write a report for the Public Policy Institute of Wales about how to increase understanding and uptake of advance decisions in Wales. |
| Exploitation Route | 1. Charities such as Compassion in Dying and the National Council for Palliative care could usefully see the creation of a broader social context for the discussion of death and dying (e.g. Dying Awareness Week) as supporting the completion of ADs. 2. It would be useful to explore the promotion of ADs in GP practices to relatively young and healthy people as part of routine primary health care. This is something we would like to take forward. 3. Further research needs to be done on why people with dementia diagnoses are not routinely completing ADs and how this can be promoted. We have made some links with people running 'memory cafes' which might enable us to explore this further. 4. We have already worked with organisations to improve AD templates and we are working on a publication about the problems people have in completing the forms that we hope will be of practical use to those who work with people trying to make ADs. 5. Providing support and information that people need to complete ADs is time-consuming and requires considerable medico-legal knowledge and interpersonal skills. If we are serious about improving AD uptake, more time needs to be allowed for these consultations and training is required - for nurses and GPs in general practice as well as specialist nurses for people with dementia diagnoses and other life-limiting conditions (MS, motor-neurone disease etc). 6. We have written a report for the Welsh government on how to improve understanding and uptake of ADs in Wales, some parts of which are already being actioned. |
| Sectors | Communities and Social Services/Policy,Healthcare |
| URL | http://ppiw.org.uk/ppiw-report-publication-increasing-understanding-and-uptake-of-advance-decisions-to-refuse-treatment-in-wales/ |
| Description | 1. Individual practitioners who participated in the seminar series reported that the seminar talks and discussions enabled them to reflect critically on their own practice and to make changes, e.g. amending nursing assessment documentation, making interventions at Regional Safeguarding Meetings, refreshing the medical curriculum to include ADs etc., (see 'Other Outputs') 2. We established an ongoing collaborative relationship with the charity, Compassion in Dying, the major provider of free ADs in England (see 'Collaborations') - and we worked with them (and with another organization, Friends at the End) to improve the quality of the AD templates offered by these organisations (see 'Other Outputs') 3. We identified some of the problems with the current uptake and implementation of ADs. This led us to develop a series of public engagement activities designed to explore ways of improving uptake by contextualizing ADs in relation to discussions about death and dying making end-of-life decision more generally. These included two large-scale 'Before I Die' festivals (funded outwith this award) in National Dying Awareness Week (Cardiff 2013 http://www.cardiff.ac.uk/beforeidie/ and York 2014 http://www.beforeidiefestival.co.uk) attracting a total of about 1500 people (see 'Engagement Activities'). 4. We presented our findings at Expert Panels on ADs at both Festivals. Additionally, we developed a novel concept - AD Clinics, which offer one-on-one help with completing ADs. The AD Clinics enabled us to learn a lot at first hand about the problems people experience in completing ADs and in the process to use our findings to date in helping these specific individuals to produce valid ADs that reflected their wishes and were likely to be applicable in the future circumstances in which they might find themselves. We have also given public talks and run AD Clinics as part of other public engagement events including European Researchers Night at York, the York Festival of Science and at campaigning (FATE/SOARS) and faith (Quakers) group meetings, and to practitioners (IMCAs) (see 'Engagement Activities'). Again we used our findings to help people who wanted to write ADs (and benefited from learning about their problems in the process). Over the last three years more than 300 people have been personally assisted by members of the ESRC seminar series group in writing ADs - a very concrete (albeit small scale) impact with positive feedback (see 'Engagement Activities') 5. Research first presented in these seminars contributed to the House of Lords Select Committee on the Mental Capacity Act via the submission presented by our partner charity, Compassion in Dying (see 'Influence on Policy"). 6. We were invited by the Minister of Health for Wales to write a report (commissioned by PPIW) about how to increase understanding and uptake of ADs in Wales. 7. We exploited to the full the productive synergies between the AD research funded in this award and research also underway at the time on another ESRC award on 'Family Experiences of Vegetative and Minimally Conscious States' (ES/K00560X/1, PI - Jenny Kitzinger, Co-I - Celia Kitzinger). Many people say that they would want to refuse life-prolonging treatment that kept them alive as a 'vegetable' (i.e. in a long-term coma): this means that there has been significant synergy between the grants (e.g. see 'Contribution to healthtalk.org', the Radio Wales programme, 'York Festival of Science' and 'Yornight'). Note that we won the 2015 ESRC Celebrating Impact award for this other research project. |
| First Year Of Impact | 2013 |
| Sector | Education,Healthcare |
| Impact Types | Societal,Policy & public services |
| Description | Compassion in Dying written evidence to the House of Lords Select Committee on the Mental Capacity Act (22 July 2013) |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Impact | Sue Wilkinson's research (for which she acknowledges the input of the ESRC Seminar Series) was cited in the charity Compassion in Dying's written evidence to the House of Lord's Select Committee on the Mental Capacity Act 2005. See CiD's written evidence on pp. 469-476, which includes extensive quotation from Sue's Wilkinson's work (cited in footnotes 26 on p. 472 and footnote 37 on p. 473). Her findings (first presented and discussed in our ESRC Seminar group) were that healthcare and legal professionals' engagement with and understanding of Advance Decisions can be limited and that the public likewise has a limited understanding of Advance Decisions - both of which severely impede uptake. As a result of this research CiD called for increased promotion of ADs at a national policy level and this recommendation was accepted by the House of Lords who recommended that the Government should: 'urgently address the low level of awareness among the general public of advance decisions to refuse treatment and promote better understanding among health care staff of advance decisions, in order to ensure that they are followed when valid and applicable; promote early engagement between health care staff and patients about advance decisions to ensure that such decisions can meet the test of being valid and applicable when the need arises; promote the inclusion of advance decisions in electronic medical records to meet the need for better recording, storage and communication of such decisions.' (Recommendation 26). The subsequent response from the Government (Valuing Every Voice, https://www.gov.uk/government/publications/mental-capacity-act-government-response-to-the-house-of-lords-select-committee-report) supports this recommendation and requests the Mental Capacity Advisory Board to include ADs in its work |
| URL | http://www.parliament.uk/documents/lords-committees/mental-capacity-act/mental-capacity-act-2005-vol... |
| Description | Report to Public Policy Institute Wales, commissioned by Health Minister, Wales |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | Increase in understanding and awareness of ADs in Wales amongst stakeholders consulted in writing report (GPs, palliative care practitioners, paramedics etc). |
| URL | http://ppiw.org.uk/ppiw-report-publication-increasing-understanding-and-uptake-of-advance-decisions-... |
| Description | External Engagement Award 2013-14 |
| Amount | £16,000 (GBP) |
| Organisation | University of York |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 10/2013 |
| End | 07/2014 |
| Title | Advance Decisions by Real People |
| Description | We asked people who have completed ADs (only 4% of the population) to submit them to us so as to build a data base of what real Advance Decisions (not templates, not the invented/recommended words on websites) actually say. We have a collection of nearly 50 ADs obtained by simply asking around. They vary along a spectrum from refusal of all life-prolonging medical intervention under any circumstances through to narrowly circumscribed refusals combined with a considerable number of requests for treatment. We are analysing these for what they show us about the problems of completing and implementing ADs. It is clear that some are invalid (one has no witness signature) or unlikely to be respected by professionals for other reasons (e.g. one is dated 1994). Others would pose real problems for practitioners who tried to implemented them because they are unclear or internally contradictory. We plan to publish a selection of these 'ADs by real people' along with (a) their author's reflections on what they were trying to achieve when they wrote them (and why); and (b) commentaries on them by intensivists, neuro-rehabilitation specialists, care home managers, lawyers, para-medics and others who are on the sharp end of trying to implement ADs (see Kitzinger and Lewis, forthcoming). |
| Type Of Material | Database/Collection of data |
| Provided To Others? | No |
| Impact | Nothing like this data base has ever existed before and we have been unable to find any previous published analysis of 'real people's' ADs. Anecdotally, practitioners who have experience of ADs have described some of the problems they face due to concerns about validity of these documents, or their intended meaning (and the existence of these problems is mentioned in the literature). But without a systematic analysis of the documents themselves we cannot actually tell what the problems are, or figure out how to solve them. (One small impact that has already resulted is that many of those who submitted their ADs to our data base have subsequently revised them to ensure that they better reflect their wishes.) |
| Description | Compassion in Dying |
| Organisation | Compassion in Dying |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Compassion in Dying is a national charity that supports people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices. They are the leading provider of free Advance Decisions in the UK. The Research and Policy Manager for Compassion in Dying, Philip Satherley, was a member of our research seminar group and attended all the meetings. Our contribution was to provide the charity (via Philip's involvement in the research seminars) with up-to-date information and research about Advance Decisions and also (via our outreach and dissemination projects which included CiD representatives) to provide the charity with a platform for promoting ADs. We also launched a feasibility study (see 'Other Outputs') exploring the possibilities of promoting ADs via GP practices: this is something that CiD has been wanting to achieve so far without success. Additionally we provided expert feedback on various iterations of the CiD AD template - most recently providing feedback on the yet-to-be-launched online interactive version (with especial expertise on the section dealing with the vegetative and minimally conscious states - drawing on expertise developed as part of our other ESRC grant ES/K00560X/1). Another member of the seminar group, Professor Sue Wilkinson (Helplines Research Unit, Loughborough University) was conducting an evaluation of the CiD helpline during the period of this award, and benefited from her participation in the seminar series with helpful feedback from other participants on parts of her report presented as talks during the seminar (see Acknowledgements in full report). |
| Collaborator Contribution | Staff from the national CiD headquarters in London have contributed to all three seminars (giving a talk at one of them) and to both AD Panels (giving a talk at both) and both AD Clinics (providing one-to-one appointments at both) held in Cardiff (2013) and York (2014) as part of the Before I Die Festivals. CiD has provided (free of charge) hundreds of copies of information leaflets, posters, and hard copies of their online AD templates (and the guidance for completing them) for distribution at our events (including all other AD Clinics, stalls associated with our other public engagement talks, and the feasibility study in a GPs practice). Local (Yorkshire) group supporters of CiD have helped with staffing stalls associated with our public outreach talks. |
| Impact | Members of the public have completed ADs as a result of learning about them through this collaboration and as a result of the support and information we have collaboratively provided (for more detail see for example the Advance Decision Clinics reported in the 'Engagement' section of the form) The AD templates designed by CiD have been significantly improved by feedback from members of the seminar series, thereby offering a better product for members of the public to record their end-of-life wishes (see full details in the section on 'Other Outputs') Research on the CiD helpline which was the result of a collaboration between a member of the seminar series and CiD was cited in the House of Lords Select Committee on the Mental Capacity Act 2005 as part of a recommendation subsequently embraced by the Government (full details in the section on 'Influence on Policy') |
| Start Year | 2011 |
| Description | Advance Decision Clinic - follow-up of Yornight (27 Sept 2014) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Twelve people either wrote ADs or revised existing ones with the help of 2 members of the ESRC Research Seminar Group (Celia Kitzinger and Sue Wilkinson). We ran an AD clinic at a city-centre location at which members of the public were offered free one-on-one consultations to help them write their own ADs - with subsequent follow-up by email or phone as necessary. Some of those who attended the AD Clinic subsequently contacted us to express their gratitude, saying that they now feel more 'confident' about creating 'effective' ADs such that their end-of-life wishes will be respected. Feedback included: 'Very many thanks for having produced your notes so quickly following our meeting yesterday. Thanks also for the further explanations and the attached article about artificial nutrition. I will work my way through them and now feel much more confident about completing the AD form. I will let you know how I get on and also get back to you if there is anything I am still stuck with, but I hardly think this likely as your notes are so comprehensive. I really do appreciate your time and effort.' (email) '[My wife] and I would like to express our sincere thanks and appreciation for your detailed and skillful analysis of our Advance Decisions at the meeting in York yesterday. The session was very useful and provided us with much food for thought. We will be modifying our ADs along the lines discussed at the consultation, making them more effective in the event that they should be needed.' (email) Due to the amount of interest in Advance Decision Clinics - which we are now unable to fulfil - we have started the process of capacity building. Two local supporters of the charity Compassion in Dying attended the AD Clinic as observers in order to begin to develop the knowledge and skills needed to do this work. We provided a short training session in advance of the clinic and also prepared for each of them an ;information pack containing the relevant sections of the Mental Capacity Act 2005, recent court judgements relevant to the way in which the Act is being implemented, a sample of (anonymised) ADs written by members of the public who've attended previous clinics (previously discussed in the seminar group) and some of my own and others' articles dealing with AD uptake and implementation). The plan is that both (and perhaps some other members of the group in future) will work with us over future sessions in order that they can develop the capacity to advise others about how to write effective and valid ADs. Through capacity building with community members in this way we hope to have a broader effect on enhancing the quality of life (and of death) in Yorkshire and in the nation as a whole, as well as increasing the effectiveness of public policy via improved understanding of it and changed behaviour to reflect that. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Advance Decision Clinic at Before I Die Festival - Cardiff (20 May 2013) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | We assisted individual members of the public who were seeking information and help in making Advance Decisions about their medical treatment. People completed Advance Decisions or revised existing ones. Advertising the event created a lot of interest which spread much more broadly - raising the profile of Advance Decisions among the general public. We had significant impacts on individuals. For example: "Please pass on my regards to Celia who was particularly helpful in helping me complete my Advance Decision form. I have gained much knowledge and feel I am in a better position to make my right end of life choices now. [] All that remains is to show my family my choice. This was inspired by the Sunday lecture for which I am particularly thankful and gained much knowledge from an inspirational panel." (Member of public with terminal illness: Feedback about the Advance Decision Panel and a one-on-one clinic session, Cardiff. Email sent 24 May 2013) |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.york.ac.uk/media/sociology/research/currentresearch/kitzinger-advancedecisions/Before%20I... |
| Description | Advance Decision Clinic at Before I Die Festival - York (17 May 2014) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | We assisted individual members of the public who were seeking information and help in making advance decisions about their medical treatment. People completed Advance Decisions or revised existing ones The event created a lot of interest in ADs that extended beyond the relatively small number of people who actually attended the clinic; advertising the event raised the profile of Advance Decisions among the general public. The AD clinic was over-subscribed and we had to run a second session. 'I very speedily wrote my Advance Decision after getting help from one of the panel at the Friends' Meeting House earlier this year. I am so glad I attended and have passed on info. to friends and family.' (AD clinic participant, email) 'I received helpful advice about fitting my thoughts into the format of the AD form from Compassion in Dying - in particular for more detailed statements in the section Values and Beliefs' (AD clinic participant, feedback form) 'The significance [of ADs] applies to all age groups in my family. I feel empowered to talk about these difficult thoughts and issues with my family and friends.' (AD clinic participant, feedback form) |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.yorkpress.co.uk/News/11204763.Awareness_week_set_to_hold_a_festival_to_die_for/?ref=rss |
| Description | Advance Decision Panel at Before I Die Festival - Cardiff (16 May 2013) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Information about Advance Decisions was conveyed to an audience of around 100 including members of the public, around 30 lawyers, and the Welsh Government's Health Minister. Celia Kitzinger convened and chaired a Panel open to members of the public (and also accredited by the Solicitors' Regulation Authority for continuing professional development points) about a particular aspect of end of life care - Advance Decisions (ADs). These are legally binding documents that permit adults with mental capacity to refuse, in advance, any treatments - such as cardiopulmonary resuscitation, artificial nutrition and hydration, antibiotics - that they would not want administered if they were to lose the ability to decide for themselves (e.g. if they were in a 'coma' or had advanced dementia). Eight of us - all members of the seminar series - spoke (for seven minutes each). We addressed the legal status of ADs, why people want to write them, the help available through the charity Compassion in Dying, and 'what if I change my mind'. We also had a speaker from the Hastings bioethics center describing the situation in the USA (where up to 30% of people have ADs, compared with 3-4% in the UK) and closing reflection on the implications for end of life care in the UK. More than 100 people signed up for this event and it was also attended by the Welsh government's new Minister for Health, Mark Drakeford, who formally closed the Festival by praising its achievements in promoting discussion about end-of-life issues and reiterating his support for improved end of life care in Wales. The event was very positively evaluated, including by solicitors present who have said they will use it to develop their own practice. Most of these presentations are available as YouTube videos from our website (see http://www.york.ac.uk/sociology/research/current-research/kitzinger-advance-decisions/#tab-4 Tweet from Clarke Willmot's Court of Protection team An evening at an excellent seminar at @eventsCU. Will now be working on advising our clients to think about making ADs #CUbeforeidie Original Tweet: https://twitter.com/CWCoP/status/336591657707384832 An independent evaluation of this event showed that it had been extremely successful, for example: • 82% of respondents said they had learned 'a lot' and the remaining 18% said 'a little'. No one who came to the event and filled out feedback said they had learnt 'nothing'. 55.1% said that the event had influenced their thinking and feelings 'a lot', and 44.9% 'a little. Again, nobody said that they had not been influenced at all. • 65.2% of people said that they would 'definitely' use the information in their work/studies compared with 28.3% who said 'possibly' and only 6.5% said 'no'. • 61.1%, said they would 'definitely' use the information from the event in their personal life 37.0% said 'possibly' and just 1.9% said 'no' they would not use the information in their personal lives. • Asked whether they would seek out more information: 68.6% said 'yes, definitely', 27.5% said 'yes, possibly', and only 3.9% said 'no'. (from Cable, J and Arcarno, C (2013) Evaluation Report on the Advance Decision Panel held as part of the Before I Die Festival, Cardiff University) Cardiff University http://blogs.cf.ac.uk/cuengagement/?attachment_id=697 |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://blogs.cf.ac.uk/cuengagement/?attachment_id=697 |
| Description | Advance Decision Panel at Before I Die Festival - York (16 May 2014) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Seventy-five people attended this event (10 of whom registered for CPD points with the SRA). Speakers were: Verena Hewat (End of Life Rights Project Coordinator, Compassion in Dying), Robert Cole (Head of Clinical Practice, West Midlands Ambulance Service NHS Foundation Trust); David Worth (retired Consultant Physician, York Hospital); Paul Murphy (National Clinical Lead for Organ Donation); Penney Lewis (Centre of Medical Law and Ethics, Kings College London), Celia Kitzinger (PI, ESRC Advance Decisions Seminar), Jenny Kitzinger (Co-Director, York-Cardiff Chronic Disorders or Consciousness Research Centre), Sue Wilkinson (Loughborough University researcher with Compassion in Dying Helpline). The discussion continued for 45 mins in the lecture theatre and for another hour over drinks afterwards. Several people signed up for the Advance Decision Clinic scheduled for the following day. Evaluation of all Before I Die Festival activities was carried out by a Festival administrator and showed significant knowledge gain amongst the audience at this event. On a 5 point scale where 5 = well informed and 1 = not informed at all: Before today, how informed were you about issues relating to the topic of this event? 2.54 After todays event how informed are you about issues relating to the topic of this event?; 4.52 Average knowledge gain of nearly 2 points (1.98) on a 5 point scale. For many people the knowledge gained was personally empowering: "I am now in a better position to write an AD" "I will make an advance decision and encourage my family members to do so also" "I will consider making an advance decision so my sisters know exactly what I want" The use (in Jenny Kitzinger's talk) of healthtalk.org video-clips from our ESRC-funded project on Family Experiences of the Vegetative and Minimally Conscious States was particularly commended: 'I found the use of video clips incredibly powerful for conveying the real experiences of people facing these issues thereby giving great importance to the need to make advance decision (which has previously felt very hypothetical and not really relevant to me).' 'Especially enjoyed Jenny's presentation as her videos made the subject 'human' and real by showing us real people who have loved ones in a coma.' The impact here demonstrates a productive synergy between activities associated with the two different ESRC awards in which the PIs of both are involved. The event was most proximally an outcome of the award on which Celia Kitzinger is PI (ES/J022306/1 and of which Jenny Kitzinger is fully participating member). The success of the event was clearly in part an outcome of the award which enabled the creation of the video-clips in which families describe their experience of PVS/MCS - an award on which Jenny Kitzinger is PI and Celia Kitzinger a Co-I (ES/K00560X/1). Members of the public said that they would write ADs and many made appointments (via the AD Clinic) for one-on-one meetings with members of the panel for help and information about doing this. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.beforeidiefestival.co.uk/listevents/page/4/ |
| Description | Death Dying Disposal Conference talk (5-8 Sept 2013) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Questions and discussion followed. n/a |
| Year(s) Of Engagement Activity | 2013 |
| Description | Friends at the End/SOARS talk - and AD Clinic (24 April 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Two members of the ESRC Research Seminar group on ADs (Celia Kitzinger and Sue Wilkinson) presented a talk about ADs to about 60 members of the organisation Friends at the End, 'a democratic society, dedicated to promoting knowledge about end-of-life choices and dignified death'; and SOARS (the Society for Old Age Rational Suicide). This was new information for many of the people present and resulted in requests for assistance with accessing AD templates and completing the forms (which we provided). At least 10 people completed ADs as a result of the talk and our follow-up AD Clinic. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://soars.org.uk/Newsletter/SOARS-newsletter-9-Apr-2014.pdf |
| Description | Invited Talk to YorkLGBT Forum (12 June 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk focused on the fact that the new law making same-sex marriage legally available does NOT mean that same-sex couple who marry will gain the right (as 'next of kin') to make medical decisions about their spouse if he/she were to become incapacitous. This caused enormous surprise since gay people (like many heterosexuals) assume that this is a right that 'next of kin' do have. It sparked considerable discussion and interest in ADs. 4 people asked for copies of AD documentation and expressed the intention of completing them. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Invited talk (and AD Clinic) for Quakers (18 May 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | We were invited to talk about Advance Decisions in the Friargate Quaker Meeting House in York after Meeting for Worship on Sunday 18th May to whichever worshippers wanted to stay for the event. This came about as a result of having rented rooms in the Quaker Meeting House for the Before I Die Festival (2014) a public engagement event in Dying Awareness Week curated by Celia Kitzinger. Around 60 people attended (including some who turned up just for this talk, not having attended worship). The talk sparked many questions and stimulated a great deal of debate and led to the request for an AD Clinic for Quakers (such as I had run during the Before I Die Festival). This was duly arranged for 2 subsequent Sundays. About 40 people took AD leaflets. An unknown but probably considerable number of Quakers decided to complete ADs and were given access to the resources for so doing. 12 signed up for the AD clinics. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Sue Ryder Care Centre Nottingham Talk (31 Jan 2013) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Health professionals |
| Results and Impact | Questions and discussion about ADs and ACP more generally, specifically in relation to long-term 'coma' One member of the audience, a peer educator about death and dying, volunteered for our healthtalk.org project (our other ESRC-funded research) as a result of hearing the talk. His wife had been in a vegetative state - he had not previously discussed this in depth in relation to ADs. |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.nottingham.ac.uk/research/groups/srcc/documents/flyers/srcc-seminar-flyer-31-january-2013... |
| Description | Training for GPs (and other professional practitioners) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We have run around 25 training workshops primarily for GPs but also for other professional practitioners (e.g. nurses, IMCAs, paramedics) and patient/carer groups. The main purpose is to encourage understanding and uptake of Advance Decisions. A secondary purpose is to learn about the barriers t uptake and to explore, with practitioners, how they can be overcome |
| Year(s) Of Engagement Activity | 2014,2015,2016 |
| Description | Training for IMCAs, Irwin Mitchell London (10 Oct 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | This training (by Celia Kitzinger) focussed on serious medical decision-making for people in PVS/MCS and showcased the healthtalk.org website (funded ESRC award ES/K00560X/1). This served to increase knowledge and capacity in the area of treatment of vegetative and minimally conscious patients and support for their families, and enabled those present to act as ambassadors for the new online resource in their own advocacy organisations. There was a particular interest in how Advance Decisions would help improve decision-making for PVS/MCS patients. At their request we subsequently worked with 7 advocates who were part of the audience to provide information and support for them in writing their own Advance Decisions (thereby drawing on expertise developed as part of ESRC grant [ES/J022306/1]). These advocates have since promoted ADs within their own organisations with both staff and clients. Most had known about ADs before the session but nobody present had actually done one. Their decision to complete and promote ADs was strongly influenced by this talk about families' experiences of PVS/MCS. The impact here demonstrates a productive synergy between activities associated with two different awards in which the PIs of both are involved (Celia Kitzinger is PI on ES/J022306/1 and Co-I on ES/K00560X/1; Jenny Kitzinger is PI on ES/K00560X/1 and a fully-participating member of the seminar series funded by ES/J022306/1.) |
| Year(s) Of Engagement Activity | 2014 |
| Description | Training for IMCAs, Irwin Mitchell Newcastle (24 Oct 2014) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | As part of this training (by Celia Kitzinger) we showed advocates our new healthtalk.org resource in order to increase knowledge and capacity in relation to the treatment of vegetative and minimally conscious patients and their families. In collaboration with an advocacy organisation, Empowerment Matters, and at their request, CK also presented a short talk about Advance Decisions to Refuse Treatment and their value in circumventing some of the difficulties that had arisen for the patients and families featured in our healthtalk.org resource. Eight advocates signed up to receive more information and training in this area. The impact here demonstrates a productive synergy between activities associated with two different awards in which the PIs of both are involved (Celia Kitzinger is PI on ES/J022306/1 and Co-I on ES/K00560X/1; Jenny Kitzinger is PI on ES/K00560X/1 and a fully-participating member of the seminar series funded by ES/J022306/1.) After this training session we were asked to organise training for advocates on how to assist members of the public who want to write Advance Decisions to Refuse Treatment. |
| Year(s) Of Engagement Activity | 2014 |
| Description | York Festival of Science - exhibition and stall (22 June 2013) |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | The activity was held in a marquee in the main shopping street in York and consisted of an exhibition (Postcards written by family members of people in long-term 'coma') and a stall, staffed by CK and a local supporter of the charity Compassion in Dying (which distributes Advance Decision templates). The exhibition and stall sparked a lot of questions and discussion. Members of the public talked about their own views and experience of end-of-life issues with CK and CiD, described their reactions to the exhibition, and took approximately 60 AD templates for completion. People reported a change in their understanding of 'coma' and the need for Advance Decisions. |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://en.wikipedia.org/wiki/York_Festival_of_Ideas |
| Description | Yornight - European Researchers' Night (26 Sept 2014) |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Celia Kitzinger gave a talk (to about 50 people) called Coma: Retelling the Story which focused on media (mis)representation of coma, and showed a short film from our healthtalk.resource featuring family members of people in long-term 'comas' talking about their experience of the media and how it impacted upon their response to coma in their own family. The film was made as part of our work on ESRC award reference ES/K00560X/1. At the same event, and in association with two local supporters of the charity, Compassion in Dying, we also mounted an exhibition and ran a stall for the public which included information about Advance Decisions and offered a sign-up sheet for members of the public who wanted one-on-one appointments at an AD Clinic to assist in writing their own. The impact here demonstrates a productive synergy between activities associated with two different awards in which the PIs of both are involved (Celia Kitzinger is PI on ES/J022306/1 and Co-I on ES/K00560X/1; Jenny Kitzinger is PI on ES/K00560X/1 and a fully-participating member of the seminar series funded by ES/J022306/1.) After the talk there was a surge of interest in the stall about coma and ADs. We were fully occupied for about two hours with conversations with people about coma and ADs. About 50 people took AD templates and 6 made follow-up appointments for further information and help in filling them in. The talk about 'coma' had clearly challenged people's preconceptions and raised concern about end of life choices. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://yornight.com/activities/health/coma-retelling-the-story/ |