1. Decision-Making for PVS and MCS Patients: Social & Ethical Challenges Professor Celia Kitzinger with Professor Jenny Kitzinger Coma and Disorders of Consciousness Research Centre www.cdoc.org.uk National IMCA Conference Thursday 12 November 2015

2. PVS & MCS patients Very serious brain damage (RTA, sporting injury, assault, suicide attempt, stroke, cardiac event) Coma Vegetative State – no awareness of self or environment - ‘permanent’ after 6/12 months Minimally conscious state - ‘permanent’ after 5 years Not terminally ill Not usually ventilator dependent – PEG-fed

3. Decisions about serious medical treatment In absence of Advance Decision (4%) – ‘best interests’ ‘consider’ P’s own views 80%+ in surveys say don’t want to be kept alive in this situation No court has found LSTs to be in best interests of PVS patient Approx 16,000 people in PVS and 30,000+ in MCS in UK Medical treatment provided is good nursing care + physiotherapy, SaLT + feeding tube Occasional ‘emergencies’ – infections etc. ‘Ceilings of care’ but feeding tube a ‘non-decision’ Failure of best interests decision making

4. Filmed Interviews with family members

5. Open-Access Publications

6. healthtalk.org - Prolonged Disorders of Consciousness – launched September 2014

8. Window of opportunity for death Many life-prolonging interventions early on … when prognosis is uncertain Fewer life-prolonging interventions after 6/12 months …. when prognosis is clearer Key life-prolonging treatment – feeding tube

9. 1. Cathy – thinks surviving in a long- term VS/MCS is ‘cruel’ 16 year old brother hit by car Left VS/MCS Cared for at home for many years She now thinks it would have been better if he’d died in intensive care Listen to Cathy here: http://www.healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/cathy

10. 2. Fern reflects on the removal of DNACPR from her partner’s records In 2010, Fern was about to give birth to their first child, when her partner had a cardiac arrest that left him severely brain injured. He was only 28 years old. Fern fought hard to ensure he would get every intervention and have a chance to recover. However, she has now thinks continuing to subject him to life-prolonging interventions is cruel and pointless. Read more: http://www.healthtalk.org/peoples- experiences/nerves-brain/family-experiences- vegetative-and-minimally-conscious- states/fern#ixzz3soXFaJYzhttp://www.healthtalk.org/peoples- experiences/nerves-brain/family-experiences- vegetative-and-minimally-conscious- states/fern#ixzz3soXFaJYz

11. Obstacles to reporting P’s wishes Not asked – didn’t know this should be considered ‘didn’t know’ (at first) Know, but don’t want to say (‘I’d feel like I was giving up on him’) Waiting for recovery – ‘miracle’ As his mother I cannot ‘advocate for his death’ Fight for good care/assessment prioritised over such questions

12. Good practice 3. Mark and Helen http://www.healthtalk.org/peoples-experiences/nerves- brain/family-experiences-vegetative-and-minimally- conscious-states/mark-and-helen Mark was clear about his role in best interests decision-making – he was not made to feel responsible He recalled being asked about his brother’s life style and likely wishes These were put on record to inform all decisions

13. Barriers to WH/WD feeding tubes No best interests meetings concerning feeding tubes Ethical objections from some senior clinicians Incorrect belief in legal distinction between WH/WD Only for PVS/MCS patients is a court hearing required by law for WH/WD feeding tube - deterrent “I’d feel like I was on trial” Trusts/CCGs not keen to initiate court hearings – expensive + time-consuming Since W v M belief that feeding tube cannot be withdrawn from MCS patient (may influence diagnosis?) Families horrified by ‘starving and dehydrating patient to death’ – ‘barbaric’

14. 4. Margaret & Gunars on CANH withdrawal http://www.healthtalk.org/peoples- experiences/nerves-brain/family-experiences- vegetative-and-minimally-conscious- states/gunars-and-margaret

15. A ‘good death’ after CANH withdrawal Listen to David and Olivia describe their experience of David’s mother who died after CANH withdrawal. http://www.healthtalk.org/peoples- experiences/nerves-brain/family-experiences- vegetative-and-minimally-conscious- states/artificial-nutrition-and-hydration

16. Solving the problem? Hold best interests meetings concerning CANH Listen to families – help families to express P’s values, wishes, feelings, beliefs Do we need court hearings for CANH withdrawal? Allowing death v actively killing? Ensure good palliative care

17. Advance Decisions to Refuse Treatmet Everyone should make one It takes just a few minutes to make a valid AD that could prevent you being kept alive in PVS/CS You don’t need a solicitor

18. Example of AD “I refuse all medical treatments aimed at prolonging or artificially sustaining my life (including but not limited to clinically assisted nutrition and hydration) if: (a)I am persistently unconscious and have been so for at least 4 weeks and (b) there is little prospect of recovery to a quality of life that I consider worthwhile (see my account of what I mean by this below) in the opinion of two appropriately qualified doctors. I meanthis refusal to remain in place even if my life is at risk.” Valid if signed, witnessed & has accompanying statement “I maintain this request even if my life is at risk” Applicable under circumstances specified

19. We have founded a charity called ADA – Advance Decisions Assistance Website: www.ADassistance.org.uk