Our research identified serious gaps in understanding of, and communication about, ‘best interests’ in the UK. The booklets below were developed to help support best interests decision-making
On-line resources about family experience
- Visit our on-line ‘healthtalk‘ resource for families and practitioners – with 250 film clips from filmed interviews alongside concise information about key issues such as ‘definitions of the vegetative state’, ‘Long term care and rehabilitation’, ‘Impact on the Family’ and ‘Treatment decisions’.
- Poster about healthtalk resource for families: – drawing family attention to the online resource about vegetative and minimally conscious states
- Poster about healthtalk resource for staff – drawing staff attention to the online resource about vegetative and minimally conscious states
Resources for families about their role and how to contribute information to best-interests decisions
- Information sheet about support we can offer
- Introductory video about role of family/friends in decision-making
- The role of Family and Friends in Decisions about life-sustaining treatment and people in prolonged disorders of consciousness (Annex to RCP guidelines 2020)
Resources for healthcare professionals to support robust and timely best interests decision-making
- A short YouTube introduction about the role of family and friends
- Guide for clinicians about conversations with families to help elicit information about patient’s values etc
- Best interests decisions about life-sustaining treatment Booklet (.pdf version):[Awaiting updated version]
- Booklet: ‘Mental capacity and best interests decisions -a guide for healthcare practitioners’ (Dr Derick Wade) (note – legal guidance in this is out of date, always get up-to-date legal advice)
- Sample Agenda (+notes) for holding a best interests meeting about life-sustaining treatment [These will be uploaded soon]
Information relevant to court hearing
- Guide for Families about how journalists can cover court case
- E-learning for healthcare professionals about court hearings (see module in ‘Caring for PDoC patients’ at cdoctraining.org.uk)
Sample advance decisions to refuse treatment
- Raanan Gillon’s Advance Decision
- Other sample Advance Decisions to follow
Other support and information:
- Royal College of Physicians [RCP] – National Clinical Guidelines on the treatment of patients in prolonged disorders of consciousness, the RCP (2020) “Prolonged Disorders of Consciousness after sudden onset brain injury”
- British Medical Association/RCP Guidance on Clinically-assisted nutrition and hydration
- B.I.G – www.braininjuryisbig.org.uk – an on-line support network for people who have loved ones with devastating brain injuries.
- Headway: Headway’s nurse-led helpline provides information on all aspects of acquired brain injury. Tel: 0808 800 2244 or helpline@headway.org.uk.
Info for researchers
- Article about working at boundaries of academia and advocacy (see publications)
- Draft letter for permission to live-tweet from court hearing