Delays in treatment withdrawal from adults in vegetative an - PowerPoint Presentation

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Delays in treatment withdrawal from adults in vegetative and minimally conscious states

Professor Celia Kitzinger + Professor Jenny KitzingerComa and Disorders of Consciousness Research CentreUniversities of York + CardiffPresented at: Judicial College Family High Court Seminar 12 January 2017, Highgate House NorthamptonshireSlide2

Dedication

Our work is dedicated to our sister, Polly Kitzinger – catastrophically brain-injured in a car accident in 2009 + kept alive in VS and MCS with medical treatments we believe she would have refused if she could.We have told part of her story – click hereSlide3

Prolonged Disorders of Consciousness:

Coma: No awareness of self or environment; no sleep/wake cycle. (Rarely prolonged)Vegetative state (VS): Sleep/wake cycle – but no awareness of self or environment. Said to be ‘prolonged’ after 4 weeks and ‘permanent’ 6 months after anoxic or other non-traumatic injury, 12 months after traumatic injury.Minimally conscious state (MCS): Fluctuating intermittent awareness of self + environment. (+/-). Defined as ‘permanent’ after 5 years.(adapted from National Clinical Guidelines click here)Slide4

Estimated numbers:

4,000-16,000 patients in VS, plus 3x as many in MCS i.e. up to 48,000 in MCS (POSTNote 2015 based on extrapolation from numbers in UK nursing homes; click here)Supportive care costs: c. £7,500 per month for PVS patients (Formby et al 2015, click here)In 2015/16 financial year, Lambeth CCG and Southwark CCG each spent more than £1m on PDoC patients. This was 7.5% and 9% of their continuing care budgets respectively. (BBC Freedom of Information Inquiry 2016; click here)Slide5

Human Rights implications

Are patients receiving life-prolonging treatments that they would refuse if they could and/or which are not in their best interests? Key life-prolonging treatment is feeding tube (CANH/ANH) – defined as ‘medical treatment’ in BlandP lacks capacity to make own treatment decisions. Treatment (absent an ADRT) should be in P’s best interests (Mental Capacity Act 2005)Court has never found feeding tube to be in best interests of PVS patient (but 1000s so sustained)Slide6

Court of Protection

Practice Direction 9E“Matters which should be brought to the court 5. Cases involving any of the following decisions should be regarded as serious medical treatment for the purpose of the Rules and this practice direction, and should be brought to the court:  decisions about the proposed withholding or withdrawal of artificial nutrition and hydration from a person in a permanent vegetative state or a minimally conscious state; “Slide7

Working Party on PD9E

Chaired by Celia Kitzinger. Participants include: Victoria Butler Cole, Derar Badwan, Jonathan Baker, Veronica English, Raanan Gillon, Andrew Hanrahan, Jenny Kitzinger, Alex Ruck Keene, Lynne Turner Stokes, Derick Wade and others.Reported to the Court of Protection Rules Committee in October 2015.Slide8

Expressed the view that “equality of treatment under the law would mean treating PVS (and MCS) patients no differently from others: this would mean that CANH-withdrawal from these patients would follow the common law and professional guidelines for all other patients, permitting withdrawal of CANH if clinicians determine that CANH is not in the patient’s best interests (and if this is not contested).”Slide9

If the Committee is not able or not minded to abolish the court requirements then: “we respectfully ask the Rules Committee to consider whether a streamlined procedure could be adopted for uncontested applications concerning patients about whom there is an agreed diagnosis of the permanent vegetative state

”. The details for this recommended ‘fast track’ procedure were outlined, with a draft new CoP form + guidance to assist clinicians.For full information including summaries of the empirical research findings underpinning these recommendations, the letter sent to Rules Committee, draft sample forms and participant bios click here.Slide10

British Medical Association supports PD9E Working Party Recommendations

“The BMA strongly supports the proposal for a streamlined process for seeking court approval in cases where all relevant parties agree that continuing to provide clinically assisted  nutrition and hydration to a patient in a permanent vegetative state is not in the patient’s best interests. As research by the Coma and Disorders of Consciousness Research Centre shows, it is in the interests of patients and their families that any unnecessary delays are avoided:  providing a clear process for preparing and submitting such applications will help to achieve this.  In the longer term, once this process is established and with appropriate safeguards, we hope that further consideration will be given to whether these uncontested cases should continue to require court approval.”(Dr John Chisholm, Chair of the BMA’s Medical Ethics Committee, 21 October 2015)Slide11

Some consequences of PD9E

Clinical team may abdicate responsibility for best interests decision-making about feeding tube, believing that this can only be decided by a court.Default position is that continuing treatment is ‘appropriate’ pending a court decision Clinicians are reluctant to engage with law and uncertain how to navigate legal processesView court application as a ‘last resort’ – hope that P will die by other meansCANH-withdrawal is rarely considered for MCS-patients (chilling effect of W v M, Baker J; the recent Briggs decision may make a v. significant difference)Slide12

Is PD9E appropriate post-

Aintree?[T]he focus is on whether it is in the patient’s best interests to give the treatment, rather than on whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. (Aintree [2013] UKSC 67) Slide13

Coma and Disorders of Consciousness Research Centre - cdoc.org.ukSlide14

Open-Access Publications: click hereSlide15

Our research finds....

A ‘window of opportunity for death’ (e.g. in ICU/ high dependency care) when prognosis is still unclear - closes as the prognosis becomes clearerFeeding tubes seen as ‘default’ (‘basic care’) - even when ceilings of treatment are in place (DNACPR, no return to ICU, no intravenous antibiotics etc).Repeated infections and ‘near deaths’ – some deaths from untreated pneumonia, gangrene, + other comorbidities (not seen as requiring declaration from the CoP)Rare to find ‘best interests’ discussion about feeding tubes – families often not aware of possibility of withdrawal.When clinicians raise CANH-withdrawal there is often significant concern from families (‘barbaric’, ‘cruel’, ‘lethal injection preferable’)Slide16

When

families raise CANH-withdrawal they’ve been told by clinicians ‘we don’t do that here’ or even ‘that’s murder’. Clinicians have made similar comments in court: “against our philosophy of care” Re CW; A Primary Care Trust v CW [2010] EWHC 3448); “strongly held and consistent view of Mr Briggs’ treating consultant that it would be unethical to withdraw his treatment by CANH” (Briggs v Briggs [2016] EWCOP 53 )Singling out withdrawal of CANH as requiring a court application adds to heavy symbolic freight of feeding tube withdrawal + notion that it’s ‘basic care’. Acts as DETERRENT to CANH-withdrawal from PVS/MCS patientsSlide17

Avoidable delays in making applications

Typically many years after family believe CANH to be not in P’s best interests before applications made to CoP.Average 9 month delay between best interests meeting at which agreement is made to make COP application + application being madeSlide18

[T]he avoidance of delay in medical treatment cases is an important imperative [...] This is not to say that assessments ought to be rushed or that delays may not sometimes be clinically purposive, but respect for a patient’s autonomy, dignity and integrity requires all involved in these difficult cases to keep in focus that these important rights are compromised in consequence of avoidable delay.

Hayden J (Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32)Slide19

Good evidence of judicial attention to avoiding delay

Effect of PD9E is to delay and deter court applications but once an application is made there is evidence of judicial attention to avoiding delay e.g., OS has been asked not to commission own independent expert without good reason; Clinicians known to be tardy in producing expert diagnostic reports seem to be less likely to be instructed; Appropriate deadlines have been set for completion of tests etc (with requirement to get back sooner if possible).Note however that withdrawal applications are not treated as ‘urgent’ by courts (unless PEG-feeding fails).Slide20

Query whether a delay is actually ‘clinically purposive’ e.g. refining a diagnosis

I do not think that it would make any difference to [my daughter] if she was diagnosed as being in a persistent vegetative state or a minimally conscious state. Either way, she would consider that she does not have any quality of life. [...] I have no doubt that she would not wish to continue living in this condition” (Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32 ) – but 2 months delay ordered by judge to clarify diagnosisSlide21

CANH-failure is fairly common after application has been submitted + before judgment (e.g., sometimes because clinical need for PEG-replacement triggered application)

PEG-replacement between directions hearing & full hearing VERY distressing for family/carers (Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32) Important to clarify procedure in advance in case of CANH-failure during delaySlide22

Social impact of judgments:Relevance of Briggs

Judgments are reported in media, used in MCA training, even appear on mugs in health + social care settings! They influence behaviour on the ground.Slide23

Briggs judgment displays

key importance of P’s own wishes ... Post-Aintree shift to increased importance of P’s values, wishes, feelings, beliefs + other factors P would consider if ableFor families this is a central concern – can see OS’s focus on ‘sanctity of life’ as fundamentally opposed to P’s own wishes. Briggs judgment is helpful for clinicians to understand centrality of P’s wishes + shows holistic application of best interests test:“I have concluded that as I am sure that if Mr Briggs had been sitting in my chair and heard all the evidence and argument he would, in exercise of his right of self-determination, not have consented to further CANH treatment that his best interests are best promoted by the court not giving that consent on his behalf.” (Charles J in Briggs – click

here

for judgment)Slide24

... and what can be taken as

evidence for P’s wishesSurvey research routinely finds that people would choose NOT to have life-prolonging treatment if PVS or prolonged MCS.If there’s an ADRT that’s conclusive (but only 4% of people have one). NB Most PDoC families write ADRTs refusing treatment for PVS/MCS.Evidence of individual P’s wishes unlikely to be equivalent to (in effect) an unsigned ADRT – not necessarily specific or related exactly to current situation + some variability in evidence between family/friends (family appreciate recognition of their ‘honesty’ – therapeutic jurisprudence!)Diagnostic precision may or may not be relevant – in most cases family report that P would not want treatment whether PVS or MCS or that it would be WORSE for P if MCSPrognosis – may be relevant to P’s wishes. Consider ‘best possible outcome’ scenario. Slide25

In addition to importance of P’s wishes, 2 key issues clarified

in BriggsWithdrawing treatment in P’s best interests is not euthanasia/murderThe idea of P as a “new person” post-brain injury cannot be used to dismiss P’s prior wishes. (See our commentary on this – click here – section 4 (“The place of a person’s wishes in best interests decision-making”))Both are very common on-the-ground discussions between families/clinicians/carers. In our experience these two issues underlie a great deal of non-compliance with MCA in this area. Briggs judgment is excellent training material.Slide26

Briggs

judgment advances case for Advance Decisions Briggs case clearly demonstrates the value of an Advance Decision to Refuse Treatment – P makes own decision in advance (e.g. ‘no feeding tube if I am in MCS for more than 1 month’) + has effect as if contemporaneous + capacitous (ss. 24-26 MCA).Excellent online resource here for making Advance Decision: https://mydecisions.org.uk - charity has reported increased uptake since Briggs judgment.LPA for health and welfare could have given Lindsey Briggs decision-making power (ss. 9-14 MCA) – but whereas AD = self-determination (e.g. can make ‘unwise’ decision), a person appointed as LPA must make decision in person’s best interests (so in this case would have been contested by clinicians). Government LPA website here

:

https

://

www.gov.uk

/power-of-attorney/overviewSlide27

Less useful aspect of Briggs judgment:

Delay and ‘conscientious objection’Clinicians’ refusal to entertain treatment-withdrawal on ethical grounds is quite common + a major cause of delay across cases (even those with consensus for withdrawal in court)Would be really helpful to address this explicitly. Failing to do so risks being seen as tacit endorsement of non-compliance with MCA & does nothing to challenge the way in which personal values of clinicians can override their legal obligation to consider treatment-withdrawal options in line with P’s values, feelings, wishes & beliefsSlide28

Very similar cases not treated as requiring COP hearing

Consensus withdrawal decisions involving children (Playfor presentation)Brain injury deaths in ICU following withholding or withdrawing of treatment from people who might subsequently have become PVS/MCS (see for example neurosurgeon Henry Marsh’s Do No Harm)Withholding or withdrawing treatments other than CANH (treated as not requiring a declaration from the COP, given wording of PD9E)Slide29

Withdrawal of CANH from Ps

in ‘coma’, e.g. patient initially thought to be PVS but rediagnosed by expert (in preparation for COP hearing) as having deteriorated to coma. CANH withdrawal proceeded without recourse to court since PD9E refers only to PVS/MCS (see Turner-Stokes case study – click here).Withdrawal of CANH from Ps who were previously PVS/MCS but have been rediagnosed as having emerged to full consciousness with profound disabilities.Withdrawal of CANH from Ps in VS but not yet diagnosed as PVS because the ‘permanent’ VS state cannot be diagnosed for a minimum of 6 months after anoxic brain injury and 12 months after traumatic brain

injury (so PD9E – which refers to the

permanent

vegetative state) does not apply during this earlier period).Slide30

W

ithdrawal of CANH from Ps without a PVS diagnosis despite being within the timespan during which diagnosis is theoretically possible (i.e. more than 6 months after non-traumatic/12 months after traumatic injury. This occurs when, for e.g., patient illness makes accurate diagnosis impossible in practice. Withdrawal of CANH from Ps who meet the formal criteria of PVS/MCS but who have not been so diagnosed since the pre-eminent diagnosis is (for e.g.) end-stage dementia, MS or Parkinson’s. (Some such Ps have come to the attention of the courts, e.g. Re N [2015] EWCOP 76)Slide31

So....

Withdrawing and withholding treatment – including CANH – from very profoundly brain-injured patients (many of whom do not fall within the ambit of PD9E) is commonplace in ICUs, high dependency units, care homes and hospices across the UK. Clinicians can and do handle these serious medical decisions in an MCA-compliant manner without recourse to the courts.The historical anomaly of PD9E – the 100 or so cases that have reached court are the tip of the iceberg of catastrophic brain injury.Slide32

Online Resource: Family Experiences of

Vegetative and Minimally Conscious States – click hereAwarded British Medical Association Prize forPatient Information on Ethical IssuesInterviews with families + medical professionalsWide range of perspectives + experiencesUsed in medical schools + patients referred to it by clinicians

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Gunars

& MargaretIn 2008 his sister had a brain haemorrhage at the age of 53 and never regained consciousness. In 2013 the CoP declared it lawful and in his sister’s best Interests to have ANH withdrawn.

Helen

In 2008 at the age of 16 Helen’s son was severely

Injured in a car accident. He was eventually diagnosed

as being in a PVS and died in 2010 after the

CoP

declared

itlawful

to withdraw his ANH

Cathy

In 1990 Cathy’s 16-year old brother was hit by a car while walking home. Her family nursed him at home for 8 years in a PVS until an application to the Court resulted in a declaration that it was lawful to withdraw ANH.

Real stories – real peopleSlide34

Thank you!

Wye Valley NHS Trust v Mr B [2015] EWCOP 60,