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End of Life – The New Law
Monday 1st October 2018
Chaired by:
The Rt Hon Lord Justice Jackson
Presented by:
Vikram Sachdeva QC
Veronica English
Professor Lynne Turner-Stokes
Victoria Butler-Cole
An NHS Trust v Y
[2018] UKSC 46
Vikram Sachdeva QC
MA BCL BM BCh
Procedural route
• Part 8 claim in QBD for declaration that
unnecessary to issue proceedings in COP
OS argument
• In every case, the court’s approval is
required before CANH can be withdrawn
from a person in PDOC, ensuring that the
patient’s vulnerable position is properly
safeguarded through representation by the
OS
Domestic arguments
• Whether Re F and/or Bland imposed
substantive rule or a rule of practice
• SC found the latter
• MCA 2005: nothing in Act
• Code of Practice paras 6.18 – 19, 8.18 –
19
• COP Practice Direction 9E
Domestic arguments (cont)
• Re M (Baker J)
• Aintree v James (SC)
• In re Briggs (CA)
• Re M (Peter Jackson J)
ECHR arguments
• A2/6/8/14
• Glass v UK
• Burke v UK
• Lambert v France
• Gard v UK
Professional Guidance
• BMA (2007)
• GMC (2010)
• RCP PDOC guidelines (2013)
• GMC/BMA/RCP Interim Guidance (2017)
Significance of the Judgment
• Must follow Code and professional
guidance – multidisciplinary meetings,
record decisions and reasons
• Should refer to relevant professional
guidance in making decision
• Does it apply to the other PD9E categories
eg organ/bone marrow donation, non-
therapeutic sterilisation?
Significance of the Judgment
(cont)• What is a dispute? Enough for one family
member or one clinician to disagree on
best interests?
• Should not hesitate to approach
• Particular benefit where decision is finely-
balanced
• PDOC patients not in a clearly different
category from other patients to
CANH withdrawal in VS and MCS
- Y and what next?
Prof Lynne Turner-StokesRRU, Northwick Park Hospital
Department of Palliative Care, Policy and Rehabilitation
King’s College London
conscious
Definitions and terminology
Prolonged disorders of consciousness (PDOC)
– Disorders of consciousness
Definitions
– ‘Continuing’ VS/ MCSLast >4 weeks since injury
– But may still emerge into consciousness
– ‘Permanent’ VS/ MCSEmergence now highly improbable
– NB “Persistent VS” – old term for ‘continuing’ VS
No longer used, as acronym (PVS) was confusing
Permanent VS / MCS
Vegetative state
– Defined in time
12 months - traumatic brain injury
6 months - non-traumatic
– Anoxic BI diffuse – less opportunity for recovery
Minimally conscious state
– ?3-5 years depending on
Type and Severity of BI
Other co-morbidities
Any trajectory of change
Ever better at saving lives
Emergency care services
– Major Trauma Networks
– Hyper-acute Stroke Units
– Defibrillators in public places
Improved outcomes
– Rescue people who would have died at the scene
Some with catastrophic brain injury
– Difficult decisions may be required
Ceiling of care
Withdrawal of life-sustaining treatment
– When further intervention is ‘futile’
Mental capacity Act 2005
For patients who lack mental capacity
– To make decisions regarding their care and treatment
– These decisions are made for them
On the basis of their best interests
Weighing up the balance of benefit vs harm
Taking into account P’s likely wishes
– Insofar as these can be ascertained
– In the absence of
an Advance Decision to Refuse Treatment (ADRT)
Health and welfare Lasting Power of Attorney (LPoA)
– Decision-maker is usually the senior clinician
Life saving treatments
Offered early on in the hope of recovery
– Once it is clear that recovery not possible
Consider if continued treatment is in P’s best interests
– Life saving treatments may include:
Cardio-pulmonary resuscitation
Escalation to ITU/HDU
Ventilatory support
Renal dialysis
Insulin for diabetes
Antibiotics for infections
Clinically assisted nutrition and hydration (CANH)
Withdrawal of CANH
Artificial nutrition and hydration (ANH)
– Medical treatment – delivered through a medical device
GMC – clinically-assisted nutrition and hydration (CANH)
Since Bland 1994
– “Not unlawful to withdraw CANH if further treatment is futile”
– But will inevitably lead to death
Within 2-3 weeks
– MCA Practice Direction 9E – Serious Medical Treatments
Section 5a - Decisions about withdrawing/withholding CANH
– From a patient in permanent VS/MCS
– Should be brought to the Court for Declaratory Relief
Anomaly in the Law
Anomalous requirement
– The only stipulation in PD9E relating to withdrawal of treatment
Did not apply to other treatments (eg ventilation)
– Nor to other conditions (eg coma)
Potentially contravened the MCA
– If an Advance Decision (ADRT) is already in place – legally binding
The Court process took on average 9 months
– Patient kept alive against their best interests (= Assault)
– Cost - £122,000 per patient
£53K legal costs,
£69K in care costs while waiting (Formby A et al 2015)
Work with CoP / Rules committee
Since Bland case in 1994
– Over 50 applications for CANH withdrawal in VS
Once diagnosis of ‘Permanent VS’ established
– All had been allowed
Is Court application still really needed?
– Working party established– Clinicians, lawyers, judges, ethicists,
– Representatives of OS and CoP Rules committee
Court application was still necessary
Fast track process
– Agreed set of documentation and reports to present with application
Streamline process
Pilot case presented – still took 17 months after submission to OS!
Evolving case law over 2 decades
Case Details Outcome and reasoning
Airedale vs
Bland 1994(pre-MCA)
Hillsborough Victim
Tony Bland in PVS
for 4 years
Withdrawal allowed (House of Lords)
Established principle of ‘futility’
On balance of benefits vs harms:
- In PVS there can be no benefits to patient – only harms
W vs M
2011
M in MCS
For 7 years
Withdrawal not allowed
But appropriate for these cases to come to Court
Judged on balance sheet of positive and negative experience
Aintree vs
James 2013
Ca colon – many
months in critical
care
Withdrawal allowed in Court of Appeal - Supreme Court
Focus on decision to give, not withdraw treatment
“Quality of life that he himself would value”
Briggs vs
Briggs 2016
Policeman and ex-
veteran – MCS still
in recovery phase
Withdrawal allowed
MCS with potential for clinical change - might yet emerge
But could never recover a quality of life that he would value
Non necessary to demonstrate permanent DoC
More recent case law
Open meeting chaired by J Charles July 2017– PD9e withdrawn in Dec 2017
Legal profession still nervous– need case law..
M vs A Hospital 2017 (Huntington’s in MC)
– Retrospective application
after permission had been given to withdraw and patient died
– Second application - Did this need to go to Court?
J Jackson – “No it didn’t”
Official solicitor – Dismissed as ‘Obiter’
– Need a ‘prima facsie’ Court application “Does this case need to go to Court?”
The case of Y
High performing business executive
– June 2017- Out of Hospital cardiac arrest – long ‘down-time’
Severe hypoxic brain injury – in VS
Family – would not want to be kept alive in this state– Several BI meetings with team and family August -and September 2017
Plan to withdraw CANH
– Trust’s legal advisors – take ‘quick’ case to court (<1 week)
Is it necessary to make a formal application to Court?
– Heard in Queen’s bench (not CoP) - Nov 2017
J O’Farrell judgement– no need to go to Court
OS appealed – Court Order - CANH must continue in the meantime
– 1 month notice if intend to withdraw
Leap-frogged to the Supreme Court
Divine intervention
22nd December 2017
– Y developed pneumonia / sepsis
Admitted to hospital – died later that day
– Most likely cause in patient in VS – aspiration
Would normally stop feed to reduce risk of further aspiration– but Court order in place
– Morning of 22.12.17 - Discussion of options:
Discontinue feed and risk contempt of court
Continue while urgent Court application sought
Compromise - continue at reduced rate to reduce risk
Took some hours to resolve…
Supreme Court Judgement
Handed down 30th July 2018
– 10 months after initial application
Upheld high Court Judgement
– No need for cases of CANH withdrawal in ‘persistent’ VS/
MCS to go to Court, so long as:
All parties are in agreement
The relevant clinical guidelines for good practice followed
(NB – slight confusion of terms)
– Helpful that the Judgement refers to ‘persistent’ VS
Applies to VS /MCS lasting > 4 weeks post injury
No suggestion of needing to wait for ‘permanency’
What next
Guidelines for Good practice
Prior to July 2017
3 major medical bodies
– Already had guidelines for CANH withdrawal
The British Medical Association (BMA)
The General Medical Council (GMC)
The Royal College of Physicians (RCP)
At open meeting re PD9e in July 2017
– Agreed to produce joint clinical guidelines
For good medical practice procedures
– To replace scrutiny by the Court
Why guidelines are needed
To reassure the Court and the public
– That these vulnerable patients will be protected
By responsible decision-making
Should patients in VS/MCS
– Have a higher bar for CANH withdrawal
Than patients with other conditions?
– Yes probably
Concern about missing patients who might yet emerge
– To experience a quality of life that they would value
Proportionate external scrutiny for prognosis and uncertainty
– Balance – Timely but rigorous process
conscious
Is diagnosis needed?
VS vs MCS
– No longer needed for legal purposes
– Nevertheless helpful to determine
P’s likely experience
– Postive and negative
Prognosis for recovery
– Range of possible recovery – ‘ best’ and ‘worst’ case
NB MCS can be a worse condition than VS
– Specialist assessment still required
For sudden onset PDOC
– But there is no ‘minimum time’ requirement
BMA/GMC/RCP guidelinesScope - CANH withdrawal – all conditions
– Set out requirements for documentation
Assessment of condition
Define diagnosis and prognosis– Best and worse case recovery
BI decision-making with all appropriate family / close friends
Independent second opinion– If in PDOC – at least one consultant must be a PDOC expert
Clear Palliative care plan in place
Documentation and audit
– Interim guidance available on BMA website
Main guidance - due for publication later this year
– Revision of RCP PDOC guidelines will follow
Questions and discussion
Acknowledgements
Working party members
– BMA/GMC/RCP Core group
– RCP PDOC Guideline Development Group
Prof Derick Wade
– Centre for Disorders of Consciousness
Profs Celia and Jenny Kitzinger
©British Medical Association
Veronica EnglishHead of medical ethics and human rights
An overview of the forthcoming
guidance on CANH
2 October, 2018
©British Medical Association
Scope
• Patients who lack capacity to consent• England and Wales• Not expected to die within hours or days• Decisions to start, restart, continue or stop
CANH• Healthy patients in PVS/MCS following sudden
onset brain injury PLUS those with multiple co-morbidities and neurodegenerative conditions
2 October, 2018 35
©British Medical Association
Legal and regulatory underpinning
• CANH is a form of medical treatment• Start from the presumption that it will be in
the patient’s best interests to provide CANH• Mental Capacity Act• Duty to consult with family etc to reach the
decision that is right for that individual patient• GMC - the need for a second clinical opinion• If agreement, no need to get court approval
2 October, 2018 36
©British Medical Association
Improving best interests decision making
• Focus on the need to regularly review all decisions to provide CANH
• Systems need to be in place to ensure reviews take place
• Clarity about whose responsibility it is• Practical guidance about best interests
decision making
2 October, 2018 37
©British Medical Association
Support from Trusts, Health Boards and CCGs• Ensuring staff receive appropriate training and
support• Putting practical processes in place to support
implementation of the guidance (eg a mechanism for obtaining second opinions)
• Making review and audit of decisions about CANH an integral part of the internal governance procedures
2 October, 2018 38
©British Medical Association
Consultation and engagement
• Core group• Professional consultative group• Families• Focus groups with BMA members in London and
Cardiff• Independent Neurological Providers Association• Roundtable with patient support groups• Targeted consultation exercise• Medical Ethics Committee and BMA Council
2 October, 2018 39
Is there a legal obligation to
bring any case before the COP?Yes:
- Deprivation of liberty authorisations falling
outside Schedule A1
- s21A challenges
- Decision not to follow an ADRT or to
overrule a LPA
- ? Unresolved disputes
What about medical treatment?
Supreme Court in Y endorsed this statement by LJ King in Briggs:
(i) If the medical treatment proposed is not in dispute, then, regardless of
whether it involves the withdrawal of treatment from a person who is minimally
conscious or in a persistent vegetative state, it is a decision as to what
treatment is in P’s best interests and can be taken by the treating doctors who
then have immunity pursuant to section 5 of the MCA.
(ii) If there is a dispute in relation to medical treatment of an incapacitated
person, and, specifically, where there is a doubt as to whether CANH should be
withdrawn, then the matter should be referred to the court for a personal
welfare determination under sections 15 to 17 of the MCA
Are there any special cases?
MCA Code of Practice 6.18:
• Non-therapeutic sterilisation
• Novel treatment
• Bone marrow/organ donation
BUT none of the supporting caselaw
imposes a legal requirement to go to court in
the absence of a dispute
No legal obligation
• Supreme Court in Y:
Re F is quite clear that it was “as a matter of
practice” that guidance should be sought
from the court by way of declaratory relief, the
practice of applying being “desirable”
Cases like Re K 2013] EWHC 242 (COP) which
said court applications were required in
sterilisation cases are simply wrong…
….unless…
• Might the ECHR mandate court applications in some
cases?
• Generally speaking, the ECtHR seems to be content
provided there is a legal and regulatory framework in
place and an option for someone to take a dispute to
court, if one arises
• But….that may not be the case in relation to sterilisation
Sterilisation• International conventions and agreements opposed to forced
sterilisation of people unable to consent – UNCRPD, CEDAW etc
• UNCRPD Committee report on the UK recommended the UK
reverses all laws, regulations and practices allowing any form
of forced medical care or surgery.
• No caselaw concerning women with mental impairments
• BUT in other cases, the ECtHR has held that sterilisation is not
generally a life-saving medical intervention and where it is carried
out without the informed consent of a mentally competent adult, it
was incompatible with the requirement of respect for human
freedom and dignity – A3 and A8
Further questions
• Would the ECtHR permit best interests decision
to sterilise someone without capacity (a) at all,
(b) if they were objecting?
• If sterilisation decisions are either an inevitable
violation of the ECHR or at least require referral
to court, would the same logic apply to decisions
on related matters?
- termination
- long-term contraception
