Protecting Choice and Refusing life-extending Interventions

Professor Celia Kitzinger has co-authored a report on how to promote understanding and uptake of 'Advance Decisions'. An Advance Decision  is a tool for people who want to protect their own choices if they lose capacity to speak for themselves (e.g. because of brain injury from a stroke or a car crash). For example, some people want to refuse interventions to artificially extend their lives if they are in a permanent vegetative state.

The report, co-authored with Professor Jenny Kitzinger (Cardiff University) was commissioned by the Welsh Minster for Health and Social Services.  It recommends a series of steps including public awareness campaigns (to counteract the widespread myth that a relative can refuse treatment on your behalf) and training for health care professionals (who often don’t understand the law in this area). The report, published this month, has prompted media attention,  been endorsed by leading barristers and GPs, and prompted extensive debate.  You can read the full findings and recommendations here: goo.gl/qeQuin

Celia Kitzinger and Sue Wilkinson are co-teaching a training course on how to help people write Advance Decisions.  It will run in May and is approved by the British Psychological Society.  Book your place here https://www.bps.org.uk/events/advance-decisions-refuse-treatment-“living-wills”-choices-end-life-part-2. Celia and Sue also regularly run training days on Advance Decisions for GPs and other crucial health care professionals, as well as providing support for individuals to write Advance Decisions for themselves.

Professor Celia Kitzinger says: “People often think it is complicated to write an Advance Decision – or that you need a lawyer.  This just isn’t true”. She says “It’s possible to record your wishes in under an hour by using a simple website such as www.mydecisions.org.uk. Then all you have to do is print it out, sign it, have it witnessed, and give it to the people who need to know about it".  Professor Sue Wilkinson adds: "Like wills, Advance Decisions are not just for terminally ill or elderly people.  We are all at risk of losing capacity to make our own decisions - for example after a car crash or sporting accident.  Everyone  should consider doing one!"

York Sociologist wins British Medical Association Award

Professor Celia Kitzinger and Professor Jenny Kitzinger, co-Directors of the Coma and Disorders of Consciousness Research Centre have won a major award from the British Medical Association (BMA).

They were awarded first prize for "Information on Ethical Issues" at the 2015 BMA Patient Information Awards for their multi-media online resource that provides information and support for families of profoundly brain injured patients. 

With the support of the charity DIPEx and the Health Experiences Research Group at Oxford University, the Kitzingers developed a multi-media online resource drawing on findings from their interviews with 65 family members with a relative in a vegetative or minimally conscious states. The resource shows a wide range of families with different experiences and views about prolonging life at the boundary between life and death.  It was used by more than 4,000 people within months of its launch and has already won awards for its impact on policy and society.  It can be viewed here.

The BMA Patient Information Awards encourage excellence in the production and dissemination of accessible, well-designed and clinically balanced information.  The reviewer for the BMA praised the team for creating: ‘a profoundly honest and singular resource which will offer wisdom, empathy, insight…and support to others…of great value to both families and clinicians', adding: ‘In over five years of reviewing for the awards this is the best resource I have seen’.

Celia Kitzinger attended the award ceremony on 7^th September 2015, along with Jenny Kitzinger and two members of the project’s Advisory Group, Margaret Kellas and Gunars Libek (family members of a vegetative patient).  Celia describes the impressive range of patient information resources highlighted by the event.

The awards ceremony was held at BMA House in London – beginning with tea and followed, after the formal ceremony, with a buffet dinner.  Both offered ample opportunity to network with other people attending the ceremony, and I made new contacts – and renewed acquaintances – with colleagues working in the charity sector.   Sir Al Aynsley-Green, President of the British Medical Association, spoke passionately about the shift over his lifetime from paternalistic to patient-centred care and the importance of listening to and learning from patients.   

The “Information for Children” award category was an important one for Aynsley-Green who is a strong advocate of children’s rights (and only the second pediatrician to have been appointed as BMA President). The winner was the Teddington Trust with a set of story books featuring a bear, “Little Ted”, and communicating the message that children with Xeroderma pigmentosum (a genetic disorder in which the ability to repair damage caused by ultraviolet (UV) light is deficient) can live full and happy lives.

Another children’s charity, CLIC Sargent, won the “Innovation Award” for a pack on “Cancer and School Life” which includes a DVD for teachers preparing to welcome a child with cancer back to school and a lesson plan to help explain childhood cancers to children.

The “Learning Disabled Resources” award went to a booklet about lymphoma for people with learning disabilities and Headway, the brain injury charity, was “highly commended” for their factsheet about how to make a complaint about health and social care services.

Most impressive, though, was the Patient Information Resource of the Year, produced by the Motor Neurone Disease Association - an end of life guide for people with motor-neurone disease.  This is close to my own interests in end-of-life decision-making, and I found the information exceptionally honest, accurate and sensitive - especially in relation to suicide and assisted suicide.  At a time when assisted dying has a high political and media profile - and people with motor neurone disease feature heavily amongst those going from England to the Swiss clinic, Dignitas, to end their lives - the ability to convey frank information about the legal status of suicide, treatment refusal, palliative care and the help that is (and is not) available for patients is very important – and it is conveyed superbly here.

This award ceremony was a wonderful event that underscored the extent to which charities (in particular) are working to ensure that patients are informed, engaged and involved in their own healthcare. All the prize winning and commended entries offer patient information in a form that enables, so far as possible, user-involvement in medical decision-making and patient care.

Professors Celia and Jenny Kitzinger - ESRC 1st prize for Outstanding Impact in Society

Professor Celia Kitzinger, Co-Director of the Coma and Disorders of Consciousness Research Centre, won the award alongside her colleague and sister Professor Jenny Kitzinger, Cardiff University.  The award recognises their work conducted on family experiences of coma, and the vegetative and minimally conscious states.

Prompting public debate, discussions of medical ethics and informing policy documents including new National Clinical Guidelines on prolonged disorders of consciousness, the two researchers also worked with Oxford University and the DIPEx charity to create a multi-media, online resource providing information and support for families and practitioners.

Launched in September 2014, the resource on healthtalk.org has reached over 4,000 people and is also being used in training healthcare and legal practitioners.

The work has also been translated into a Radio 3 programme, 'Coma Songs' which challenges common cultural misrepresentations of comas and reached around 59,000 people.

In addition to the ESRC award, the research received national recognition earlier this year coming joint runner-up in the Guardian University Awards 2015 and winning Cardiff University’s Innovation Policy Award earlier this month.

Celia Kitzinger said: “The ESRC impact awards show the importance of social science research in creating positive social change – from challenging forced marriage and domestic violence to helping families whose relatives have disappeared.  We are delighted that our own research on coma and disorders of consciousness has been recognised for its impact on practice and policy.”

-          For further information on the Coma and Disorders of Consciousness Research Centre, visit: http://cdoc.org.uk/

-          To view the online resource on family experiences of coma, and vegetative and minimally conscious states, visit: http://www.healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/overview

There is a YouTube video about their work available at: Youtube video about their work is available at https://www.youtube.com/watch?v=8RLt3P42Fzk

Celia Kitzinger - Why are patients in permanent comas routinely kept alive?

An article has been published in "The Conversation Today" about Celia and Jenny Kitzinger's research in the area of patients who are in a permanent coma.

• The article is available on line at http://theconversation.com/why-are-patients-in-permanent-comas-routinely-kept-alive-43365
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• The video outlining their work is available on YouTube

Impact - Houses of Parliament POSTnote on Vegetative and Minimally Conscious States

Three pieces of research by Celia Kitzinger (University of York) and Jenny Kitzinger (Cardiff University) have been cited in the Houses of Parliament Parliamentary Office of Science and Technology POSTnote on "Vegetative and Minimally Conscious States" - see references 72, 73 and 90 on the attached POSTnote.

POST is an office of both Houses of Parliament, charged with providing independent and balanced analysis of policy issues that have a basis in science and technology.  Most parliamentarians do not have a scientific or technological background but science and technology issues are increasingly integral to public policy. Parliamentarians are bombarded daily with lobbying, public enquiries and media stories about science and technology. POST's aim is to help parliamentarians examine such issues effectively.  

You can see the full directory of POSTnotes here.  http://www.parliament.uk/mps-lords-and-offices/offices/bicameral/post/publications/postnotes/

Celia Kitzinger - Guardian Research Impact Awards

Congratulations to Celia and Jenny Kitzinger (Cardiff University) whose work translating their research on family experience of catastrophic brain injury into a multimedia online support and training resource has won a runner up prize in the Guardian Research Impact Awards
http://gu.com/p/46fkk/sbl