Decision-Making for PVS and MCS Patients: Social & Ethical Challenges

Professor Celia Kitzingerwith Professor Jenny Kitzinger

Coma and Disorders of Consciousness Research Centrewww.cdoc.org.uk

National IMCA ConferenceThursday 12 November 2015

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

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

Filmed Interviews with family members

Open-Access Publications

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

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

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

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#ixzz3soXFaJYz

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

Good practice3. 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

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’

• 4. Margaret & Gunars on CANH withdrawal• http://www.healthtalk.org/peoples-

experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/gunars-and-margaret

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

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

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

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 weeksand(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

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