Background: Modern medicine has led to an increasing number of people surviving in long term Prolonged Disorders of Consciousness [PDoC] (vegetative or minimally conscious states). Recent developments in law and professional guidelines have led to an increase in best interests reviews of medical interventions for such patients. In particular, concerns have been raised about ‘treatment by default’, without discussion of whether or not the patient would have wanted life-sustaining treatment in definitely. Reviews about (dis)continuing clinically-assisted nutrition and hydration have, in some cases, found that such treatment has ceased to be in the patient’s best interests.
Research and development: Research from the “Coma and Disorders of Consciousness Research Centre” at Cardiff University found that many healthcare professionals are now encountering their first patients in such situations and there is an urgent need to ensure they provide optimal care. 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 a 3 hour, mulit-media, online course to help support and update staff
(https://cdoctraining.org.uk/endoflife-registration/).
The Marie Curie Research Impact initiative: Funding from the Marie Curie Research Impact fund allowed us to set up a launch seminar to discuss the issues, followed by the offer of free places on this online course. We also carried out an evaluation via questionnaires and focus groups to explore the impact on learners.
Results: Eighty four people completed the course, 95% reported positive improvements in relation to all the following elements: (a) understanding/knowledge about the appearance of PDoC patients; (b) when to discussing palliative care; (c) clinical treatment following CANH withdrawal; (d) people’s concerns about withdrawal and (e) staff, family and patients’ diverse values and beliefs and how to offer support. Learners also reported impact on team working, communication and care for patients and highlighted that thinking through the palliative care issues helped healthcare professionals’ engage with best interests decision-making about life sustaining treatment. One unanticipated outcome was also that some families of PDoC patients did the course and used it to reflect on the treatment for their relatives and/or advocate with clinical teams.
Conclusion: This intervention demonstrates the need for, and potential effectiveness of, online staff training around care for this relatively unusual patient group. It also highlights how such course might inform reflection about life sustaining decisions both for staff and for family groups.
