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 about key aspects of decision-making
- Introductory video about role of family/friends in decision-making
- 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]
- View a short YouTube introduction to the booklet about the role of family and friends
- Booklet: ‘Mental capacity and best interests decisions -a guide for healthcare practitioners’ (Dr Derick Wade) (note – legal guidance may be out of date, always get uptown date legal advice)
- Booklet (.pdf version): ‘Timeline on administering and withholding/withdrawing treatment from severely brain injured patients (or, if you prefer, views as a Flipbook here)
- 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:
- National Clinical Guidelines on the treatment of patients in prolonged disorders of consciousness, the Royal College of Physicians (2013) – NB new one’s due out in November 2019
- 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