End of life care

Project summary 

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/). We have funding from the  Marie Curie Research Impact fund to offer this training for free to hospices and other 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.

We held a launch seminar on 19th October 2023 – the project runs til summer 2024 (sign up here:  Sign Up form) or get in touch with us directly: KitzingerJ@cardiff.ac.uk

Grant holders: Prof Jenny Kitzinger, Professor of Communications Research JOMEC, Cardiff University; Prof 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.