JENNY KITZINGER AND CELIA KITZINGER OPINION


patients in permanent vegetative or minimally conscious states – even if doctors and family agreed that the feeding tube was not in the patient’s best interests. Such court applications were thought to be mandatory ever since the first such case (the Hillsborough victim Tony Bland) was brought before the courts almost a quarter of a century ago. But in July 2018, the UK Supreme Court ruled that there is no requirement for court approval so long as relevant law and professional guidance are followed and there is no doubt or dispute.


“ The ability of research to


create positive change in policy and practice needs more than academic publications


We welcome the Supreme Court judgment


because our research found that the apparent requirement for judicial scrutiny of these cases was acting as an obstacle to delivering patient-centered care, leading to long-term and invasive treatment that could be futile or unwanted. In particular our findings highlighted that the legal process could deter both clinicians and families from considering whether or not a feeding tube was in a patient’s best interests. Even when this question was considered, there could be long delays before a decision was enacted because of the length of time it can take to get cases to court. The research – by members of the Coma and Disorders of Consciousness Research Centre – combined multidisciplinary approaches (across economics, clinical practice, anthropology, sociology etc) and in-depth research into family experience and patient pathways. We disseminated our findings widely including, with the help of ESRC funding, creating e-learning resources for professionals and a multimedia resource for families – www.healthtalk. org/peoples-experiences/nerves-brain/family- experiences-vegetative-and-minimally-conscious- states/topics – which won awards both from the ESRC (for ‘Impact in Society’) and from the British Medical Association (for Patient Information on Ethical Issues). Partly as a consequence of these publicly available resources we were asked by professionals and by families to provide support for them as they went through the court process, and on one occasion


”


Creating positive change U


Jenny Kitzinger and Celia Kitzinger reflect on the significance of the recent UK Supreme Court judgment about feeding tubes and end-of-life decisions


NTIL RECENTLY, IN England and Wales, it was widely believed that it was necessary to get court approval before feeding tubes could be withdrawn from


acted as ‘litigation friend’ in court. Some of these cases have resulted in key precedent-setting judicial decisions in which judges made explicit statements that they believed it was not mandatory for all such cases to come to court. We also contributed to professional


development events (including at an ‘away day’ for judges) and served on working parties of the Royal College of Physicians and British Medical Association developing professional guidelines. In 2015 we initiated a working party of our own – specifically to collaborate with legal and clinical experts to explore ways of challenging the apparent requirement for court applications: our recommendations (supported by the British Medical Association) were presented to the Court of Protection Rules Committee. We were particularly pleased that our research publications have been cited as evidence (both orally and in submissions to the court) in several cases – including in the Supreme Court itself. The Supreme Court judgment is an important


step towards improving patient-centred care. Our experience suggests that the ability of research to create positive change in policy and practice needs more than academic publications – it requires ‘user engagement’ in the development of research projects from the outset and encouraging dialogue as the research evolves. n


i


Celia Kitzinger and Jenny Kitzinger are Co-Directors of the Coma and Disorders of Consciousness Research Centre based at Cardiff University. Celia is Honorary Professor in the Cardiff School of Law and Politics. Jenny is Professor in the Cardiff School of Journalism, Media and Culture. Telephone 029 208 74571 Email kitzingerj@cardiff.ac.uk


Coma and Disorders of Consciousness Research Centre Web cdoc.org.uk Twitter @CDOCuk


AUTUMN 2018 SOCIETY NOW 17


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