Launch Event: Improving end of life care for PDoC patients, online training opportunities

Funded by the Marie Curie Research Impact Fund

Project summary – and offer of free online training in end-of-life care for PDoC patients 

Recent developments in law and professional guidelines have led to an increase in best interests reviews of medical interventions for patients in Vegetative and Minimally Conscious States – known collectively as “Prolonged Disorders of Consciousness” [PDoC]. In particular these reviews have addressed (dis)continuing clinically-assisted nutrition and hydration and, in some cases, it is found that such treatment has ceased to be in the patient’s best interests. Many healthcare professionals are now encountering their first patients in such situations and there is an urgent need to ensure they provide optimal care.

Research from the “Coma and Disorders of Consciousness Research Centre” at Cardiff University found that hospice staff are frequently unfamiliar with PDoC and have unanswered questions about law and ethics. They may also not be up-to-date with the decision-making process or specialist palliative guidelines for PDoC patients (from the BMA and RCP, 2018 and 2020). In other settings, such as neuro-rehabilitation centres, staff may be familiar with some such issues, but face other challenges e.g. lack of experience with palliative approaches. This can lead to problems with looking after patients (and their families) in both settings and create distress within healthcare teams.

We translated this research into an online course to help support and update staff (https://cdoctraining.org.uk/endoflife-registration/). This new project with Marie Curie will offer this training for free to all nine Marie Curie hospices and to four other hospices or units (e.g. neuro-rehabilitation centres). This initiative will also allow us to evaluate the impact of the online course, and consider any further development needed.

If your team might want to participate in this project please get in touch with us: KitzingerJ@cardiff.ac.uk

Alternatively find out more by joining us for our online launch seminar on 19th October – sign up for this at https://cdoctraining.org.uk/mci-sign-up/

Grant holders:

Prof Jenny Kitzinger, Professor of Communications Research, Coma & Disorders of Consciousness Research Centre, Cardiff University

Dr Nikki Pease, Consultant palliative medicine, Velindre NHS Trust

Dr Siwan Seaman Hospice Consultant, Velindre University NHS Trust and Marie Curie

CE – CE’s husband received neuro-palliative care following a decision to discontinue CANH. She  also has professional expertise in the area of  brain injury

The project is being carried out in collaboration with: Liz Fahy, Educational Technologist, GeckoSurfing.