Overview
My current research and advocacy relates to matters in the Court of Protection. I'm co-founder of the Open Justice Court of Protection Project (winner of a "Real Impact' Award from Emerald Publishing in 2021).
Since 2010 my research has focussed on coma and disorders of consciousness. I'm co-director of the Coma and Disorders of Consciousness Research Centre
I'm an academic psychologist by background. I studied Experimental Psychology at St Hilda's College, Oxford University (1975-1978) and then went on to research a PhD on lesbian identities and politics in the Psychology Department at the University of Reading (1985). The book of my PhD was published as The Social Construction of Lesbianism (1980) and won a Distinguished Publication Award.
I am a Chartered Psychologist and Fellow of both the British Psychological Society and the American Psychological Association. In 2016 I was awarded a Lifetime Achievement Award for my research on social justice issues from the British Psychological Society.
I am an experienced qualitative researcher, and my work has encompassed research on gender and sexuality, the structure of human communication (conversation analysis - including medical interaction), and end-of-life decision making. Various of my publications have won an Outstanding Research Award from the British Psychological Society, and both a Distinguished Book Award and a Distinguished Scientific Contribution Award from the American Psychological Association. A full list of publications (many open access) is available on my Google Scholar profile.
My interest in law and its implications for human welfare developed over the last decade or so as it became increasingly apparent that human flourishing cannot be achieved by Psychology alone, but demands changes in law, social policy and social structure. I completed the Graduate Diploma in Law (with Distinction, 2012), qualified as a mediator with the London School of Mediation (2017), and focus my research on challenging areas of law and policy in relation to medico-legal issues. I've contributed to numerous policy development guideline groups and working parties including the British Medical Association core editorial group that produced the national guidance on clinically assisted nutrition and hydration, the Royal College of Physicians guidelines development group for national guidelines on prolonged disorders of consciousness and (currently) the Lancet Commission on the Value of Death.
Publications
2021
- Kitzinger, J., Kitzinger, C., White, B., Wilmot, L., Lewis, P. and Downie, J. 2021. International perspectives on reforming end-of-life law. In: White, B. and Wilmot, L. eds. International Perspectives on End-of-Life Reform: Politics, Persuasion and Persistence. Cambridge: Cambridge University Press, pp. 250-276.
2020
- Kitzinger, J. and Kitzinger, C. 2020. How to change the Law: challenging mandatory court hearings for people in vegetative and minimally conscious states. In: Politics, persuasion and persistence: International perspectives on end-of-life law reform. Cambridge: Cambridge University Press
2019
- Kitzinger, C. and Kitzinger, J. 2019. Supporting families involved in court cases about life-sustaining treatment: Working as academics, advocates, and activists. Bioethics 33(8), pp. 896-907. (10.1111/bioe.12583)
2018
- Smith, R. et al. 2018. Lancet Commission on the value of death. The Lancet 392(10155), pp. 1291-1293. (10.1016/S0140-6736(18)32388-2)
- Kitzinger, J. and Kitzinger, C. 2018. Deaths after feeding tube withdrawal from patients in vegetative and minimally conscious states: a qualitative study of family experience. Palliative Medicine 32(7), pp. 1180-1188. (10.1177/0269216318766430)
- Chatfield, D. A., Lee, S., Cowley, J., Kitzinger, C., Kitzinger, J. and Menon, D. K. 2018. Is there a broader role for independent mental capacity advocates in critical care? An exploratory study. Nursing in Critical Care 23(2), pp. 82-87. (10.1111/nicc.12290)
- Kitzinger, J. and Kitzinger, C. 2018. Why futile and unwanted treatment continues for some PVS patients (and what to do about it). International Journal of Mental Health and Capacity Law 23, pp. 84-149.
2017
- Kitzinger, J., Kitzinger, C. and Cowley, J. 2017. When ‘Sanctity of Life’ and ‘Self-Determination’ Clash: Briggs v Briggs [2016] EWCOP 53 - Implications for policy and practice. Journal of Medical Ethics 43, pp. 446-449. (10.1136/medethics-2016-104118)
- Kitzinger, J. and Kitzinger, C. 2017. Causes and consequences of delays in treatment-withdrawal from PVS patients: a case study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32. Journal of Medical Ethics 43, pp. 459-468. (10.1136/medethics-2016-103853)
2016
- Greenhalgh, T. et al. 2016. An open letter to The BMJ editors on qualitative research. BMJ 352, article number: i563. (10.1136/bmj.i563)
- Kitzinger, J. and Kitzinger, C. 2016. Increasing understanding and uptake of advance decisions in Wales. Discussion Paper. Cardiff: Public Policy Institute for Wales. Available at: http://ppiw.org.uk/ppiw-report-publication-increasing-understanding-and-uptake-of-advance-decisions-to-refuse-treatment-in-wales/
- Latchem, J., Kitzinger, J. and Kitzinger, C. 2016. Physiotherapy for vegetative and minimally conscious state patients: family perceptions and experiences. Disability & Rehabilitation 38(1), pp. 22-29. (10.3109/09638288.2015.1005759)
- Kitzinger, J. and Kitzinger, C. 2016. Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences. Journal of Medical Ethics 42, pp. 11-17. (10.1136/medethics-2015-102777)
2015
- Edgar, A. R., Kitzinger, C. and Kitzinger, J. 2015. Interpreting chronic disorders of consciousness: medical science and family experience. Journal of Evaluation in Clinical Practice 21(3), pp. 374-379. (10.1111/jep.12220)
- Halliday, S., Kitzinger, C. and Kitzinger, J. 2015. Law in everyday life and death: a socio-legal study of chronic disorders of consciousness. Legal Studies 35(1), pp. 55-74. (10.1111/lest.12042)
- Saunders, B., Kitzinger, J. and Kitzinger, C. 2015. Participant anonymity in the Internet age: from theory to practice. Qualitative Research in Psychology 12(2), pp. 125-137.
- Kitzinger, C. and Kitzinger, J. 2015. Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives. Journal of Medical Ethics 41(2), pp. 157-160. (10.1136/medethics-2013-101799)
2014
- Nettleton, S., Kitzinger, J. and Kitzinger, C. 2014. A diagnostic illusory? The case of distinguishing between 'vegetative' and 'minimally conscious' states. Social Science and Medicine 116, pp. 134-141. (10.1016/j.socscimed.2014.06.036)
- Saunders, B., Kitzinger, J. and Kitzinger, C. 2014. Anonymising interview data: challenges and compromise in practice. Qualitative Research 15(5), pp. 616-632. (10.1177/1468794114550439)
- Holland, S., Kitzinger, C. and Kitzinger, J. 2014. Death, treatment decisions and the permanent vegetative state: evidence from families and experts. Medicine, Health Care and Philosophy 17(3), pp. 413-423. (10.1007/s11019-013-9540-y)
- Kitzinger, C. and Kitzinger, J. 2014. 'This in-between': how families talk about death in relation to severe brain injury and disorders of consciousness. In: Van Brussel, L. and Carpentier, N. eds. The Social Construction of Death : Interdisciplinary Perspectives. Hampshire, UK: Palgrave Macmillan, pp. 239-258., (10.1057/9781137391919_13)
- Kitzinger, C. and Kitzinger, J. 2014. Grief, anger and despair in relatives of severely brain injured patients: responding without pathologising. Clinical Rehabilitation 28(7), pp. 627-631. (10.1177/0269215514527844)
2013
- Kitzinger, J. and Kitzinger, C. 2013. The 'window of opportunity' for death after severe brain injury: family experiences. Sociology of Health & Illness 35(7), pp. 1095-1112. (10.1111/1467-9566.12020)
2010
- Kitzinger, C. and Kitzinger, J. 2010. Giving voice to the voiceless – high-tech speculation, or basic respect?. The Psychologist 23(6), pp. 450-451.
1993
- Kitzinger, J. and Kitzinger, C. 1993. 'Doing it': representations of lesbian sex. In: Griffin, G. ed. Outwrite: Lesbianism & Popular Culture. Pluto, pp. 9-25.
