Collaboration with medical/science and legal practitioners: Jenny Kitzinger was on the editorial group of  the Royal College of Physicians [RCP] Working Party rewriting guidelines on the management of the ‘vegetative’ state. She also served on the Nuffield Council on Bioethics [NCB] Working Party on ‘novel neurotechnologies to intervene in the brain’. Celia Kitzinger contributed to the British Medical Association guideline writing group in relation to Clinically Assisted Nutrition and Hydration (2018).

Our research informed the subsequent guidelines for practitioners and recommendations for policy makers. The NCB guidelines for journalist drew extensively on our research and our findings led to the addition of a special appendix  to the RCP guidelines to support appropriate family involvement in ‘best interests’ decision-making and contribute to the guide for families from the BMA.

In addition our work with legal contributors – and in particular convening a working party on Practice Direction 9e contributed to the deletion of that Practice Direction (2017) and helped inform subsequent clarifications of the law (e.g. in Supreme Court judgment Re Y).


See the RCP press conference discussion of the role of the family in serious medical treatment decisions below.

Materials for families and practitioners: 

  • Our discussions with leading neuro-rehabilitation consultant, Derick Wade (from the Oxford Centre for Enablement) led him to develop guidelines on how to make ‘best interests’ decisions in practice.
  • We also wrote a booklet for practitioners and for families about the role of family and friends (adopted by the Royal College of Physicians as an appendix to their new guidelines)
  •  We were awarded an ESRC Knowledge Exchange Grant and  filmed interviews with family members for a healthtalkonline website for service users and for professional training. (See also ‘Practitioner Training’) – this won the BMA 2014 award for Patient Information on Ethical issue.

House of Lords select committee: We gave evidence to the House of Lords committee scrutinising the Mental Capacity Act 2005. Our research, along with evidence from over 200 others, informed the conclusion that vulnerable adults are being failed by the Act designed to protect and empower them and informed recommendations for improvements. We have continued to contribute to a wide range in inquiries since then.