ESRC Research Impact Award for thinking developed as part of Sheila Kitzinger Programme
A workshop on ‘International Perspectives on End-of-Life Decision Making for PDoC (prolonged disorders of consciousness) Patients: Human rights, law, medicine, science and society’ hosted at Green Templeton College in 2017 was a critical juncture to the success of prize-winning research by Professor Celia Kitzinger and Professor Jenny Kitzinger.
They have been awarded first prize for Outstanding Public Policy Impact for their research on ‘Changing the law to promote person-centred decision-making for “coma” patients’ by the Economic and Social Research Council. Celia Kitzinger and Jenny Kitzinger co-direct the Coma and Disorders of Consciousness Research Centre at Cardiff University.
The research had identified problems with the law in England and Wales which required court applications before life-sustaining treatment could be withdrawn from patients in prolonged disorders of consciousness (i.e. coma, vegetative and minimally conscious states). The research was compelling in showing that mandatory court applications caused harm to patients and to their families – especially because treatment was often continued for years or decades after families and clinicians agreed that it was no longer in the patient’s best interests. But there was concern about how decisions would be made and implemented without the oversight of a judge.
Celia Kitzinger and Jenny Kitzinger
The workshop at Green Templeton brought together a member of the Court of Protection judiciary and leading lawyers from the Court of Protection bar, with senior clinicians working with these patients and involved in writing professional guidelines about them. Crucially, it also brought in as speakers, experts from other countries (including the USA and the Netherlands) which do not require court approval before withdrawing clinically-assisted nutrition and hydration (CANH) from PDoC patients.
Intense discussion over a two-day workshop facilitated an understanding of how decision-making in England and Wales could work, without the requirement for mandatory court applications. The workshop also created networking opportunities among key people well placed to contribute to changing current policy and practice in England and Wales.
ESRC Celebrating Impact Prize short film
In 2018, Court of Protection Practice Direction 9E (‘decisions about the proposed withholding or withdrawal of artificial nutrition and hydration from a patient in permanent vegetative state or minimally conscious state should be brought to the Court of Protection’) was withdrawn, and in 2020 new guidance from the Royal College of Physicians – guidance to which both Celia Kitzinger and Jenny Kitzinger contributed – outlined the procedures to be followed in decision-making about these cases.
Victoria Butler-Cole QC has commented, ‘It is indisputable that Professor Jenny Kitzinger and Professor Celia Kitzinger have directly contributed to the dramatic and positive evolution of the law and practice over the last seven years concerning the treatment of people with prolonged disorders of consciousness. Their work has been fundamental in helping to promote person-centred care for all.’
The Sheila Kitzinger Programme at Green Templeton College honours the life and builds on the work of the social anthropologist Sheila Kitzinger (1929-2015). Sheila’s comparative research blended intense immersion in different communities, participant fieldwork and strong clinical knowledge to advocate evidence-based decisions on medical, legal and social change. Her practical and policy work ranged over a broad range of issues touching the human rights of prisoners, refugees and others marginalised by society on pretexts of race, religion or poverty: but above all she was a high-profile feminist campaigner for the empowerment of women to secure for them freedom and choice in pregnancy, childbirth and breastfeeding.
