On the 11th July, INPA co-hosted a conference on Prolonged Disorders of Consciousness (PODC) with Cardiff University’s Coma and Disorders of Consciousness (CDOC) research centre. The conference, titled “PDOC: exploring best interest decision-making and end of life care”, presented the initial draft of the new guidelines on the withdrawal of clinically assisted nutrition and hydration (CANH) from the British Medical Association (BMA). Professor Mike Barnes (INPA) opened the day with a warm welcome and reiterated the importance of such guidelines and the fantastic opportunity it was for those involved in PDOC care to have their say in their development.
Members of INPA including nurses, rehabilitation support workers and service managers as well as external guests such as GP’s, contributed to roundtable discussions on several key issues. For example, the accessibility of the guidelines, procedures for initiating the guidelines, recording and reviewing best interest decision making and what support needs to be put in place for both families and care teams. The latter evoked a large discussion on what is needed for good practice and the potential challenges that may arise. Professors Jenny Kitzinger and Celia Kitzinger (CDOC) shared their findings from recently published research based on interviews with families following the withdrawal of CANH. This highlighted that families were initially anxious but, in the end, felt it was a peaceful death for their loved ones. Dr Julie Latchem-Hastings (CDOC) also shared the thoughts and feelings of allied health care professionals and made reference to a number of resources available on the CDOC website which are available for free (http://www.cdoctraining.cdoc.org.uk). The CDOC team referred to the ‘burden of witness’ and the difficulty of witnessing the dying process. The impact of withdrawing CANH effects families, staff and other patients and it was clear through discussions that greater support is needed to help individuals through this time.
To close the day, Jill Greenfield, a lawyer at Fieldfisher London, presented a case study to highlight how litigation can help improve access to rehabilitation. The story she shared was a lovely way to end the conference and highlighted the positive work which can be achieved with rehabilitation. The conference was well received and was a great opportunity for those working
directly with individuals with PDOC to share their stories. The feedback and suggestions collected throughout the day will now be taken back to the BMA working party to help aid the final guidelines which are due to be released in autumn 2018.