Social Media, Innovative Therapy & Recent High- Profile … · 2018-12-18 · Social Media, Innovative Therapy & Recent High-Profile International Controversies Joe Brierley, Consultant

Social Media, Innovative Therapy & Recent High-Profile International Controversies

Joe Brierley, Consultant Intensivist & Director of Bioethics

Great Ormond St Children’s Hospital, London, UK

[email protected]

Faculty Disclosure

Company NameHonoraria/

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No, nothing to disclose

X Yes, please specify: (i) I’m not a cardiac intensivist…..(ii) Proud father of daughter with complex neuro issue

BUT WHAT ABOUT THOSE WHO GIVE SECOND OPINIONS!!!!

PCICS

Social Media Role in High-Profile International Controversies

#AAAAAAAARRRRRGHHHHHHH

Plan

1. Background

2. Law

3. Innovation

4. Controversy/Social media

5. Second opinions

6. Staff

7. The future/summary

PAediatrics day-to-day

• P/NICU Survival >96%

• Increasingly invasive therapies

• ECMO/Berlin hearts

• Organ/bone marrow transplants

• Long-term ventilation• Chronic lung disease

• Ex-premature

• Neuromuscular –e.g. SMA nusinersen/gene therapy

• Multiple palliative therapies for neurodisability

• Rare disease treatments

1 Background

PICU outcomes - Melbourne

2003• 84% alive – 10% ‘unfavourable outcome’

& dependent on care

• 90% favourable outcome - likely to lead independent existence

• 16% unfavourable quality of life

• 16% dead: 49% died in ICU 5% in hospital 46% died after discharge

2010• Length of stay & illness severity unchanged

- substantial mortality reduction• Proportion survivors moderate/severe

disability increased significantly• Some children allowed to die in 1982 &

1995 kept alive 2005-2006, but with disability

• ‘Trend important implications -patients & families, and community as a whole...

Taylor A et al. Functional outcome and quality of life of children after admission to ICU. ICM 2003 29:795–800

Namachivayam P et al. Three decades of PIC. PCCM. 2010 Sep;11(5):549-55

Fraser L et al. Rising National Prevalence of Life-Limiting Conditions in Children in England. Pediatrics 129 (4) April 2012. e923-9

Fraser et al: FIGURE 2 2009-10A: LLC English child prevalence: deprivation category by ethnic groupB:LLC English child prevalence : ethnic group by deprivation category

What else is coming our way

• More children surviving complex interventions with chronic disability:

• Technology-dependent children• Home ventilation – LTV & NIV 2000s

• Home parenteral nutrition 2010

• Home renal replacement as destination 2014

• Home ventricular assist devices 2018

• 3-4 stem cell transplants

• Metabolic, cancers, rheumatological……

• Neuromuscular patients on LTV –invasive/non-invasive undergoing novel treatments

Long Term Ventilation (LTV)UK children on LTV in U.K. based on data from Wallis et Al figure likely between 3800 and 1200

0

500

1000

1500

2000

2500

3000

3500

4000

1985 1990 1995 2000 2005 2010 2015 2020

Num

ber

of

LT

V c

hildre

n i

n t

he U

.K.

Years

Fine-Goulden MR, Ray S, Brierley J. Decision

making in long-term ventilation for children.

Lancet Respir Med. 2015 Oct;3(10):745-6

• No process

• No system for decision-making

• No equality of access

Ray S, Brierley J, Bush A, Fraser J, Halley G,

Harrop EJ, Casanueva L. Towards developing an

ethical framework for decision making in long-term

ventilation in children. Arch Dis Child. 2018

Nov;103(11):1080-1084

Zone of parental discretion

• In Flux

‘Increasingly families effectively dictate/demand treatments’

vs.

‘Clinicians now have to listen’

Parents cannot demand usual practice ➔ Parents cannot refuse

e.g. tattooing e.g. emergency NEC surgery

Gillam L. Children's bioethics and the zone of parental

discretion Monash Bioeth Rev. 2010 Sep;20(2)

Framework to help decision-making when facing challenge deciding to commence/continue life-sustaining therapy (LST) in children 2015 (version 3)

Main changes• More palliative care in end-of-life care (EOLC)

for all children e.g. in ICU

• Organ donation routine in EOLC

• Previous 5 categories distilled into 2 -consideration withholding/withdrawing LST (WWLST) where life limited in

(i) quantity or (ii) quality

• Other major change new third category

(iii) WWLST considered ethical where competent child consents to palliative approach with support of both clinical team and parents

Framework axioms

A In relation to decision making

• Based on open timely communication, mutual respect

• Decisions should be informed, freely made

• Disagreement resolution by consensus etc.

• Parents have ethical & legal authority unless…harm vs. best interests?

• Child’s wishes (current & antecedent) given appropriate weight in accord with maturity and understanding

• Mediation attempted, not a panacea

• Ethical & Legal intervention considered when disputes intractable

What is happening – musings on last decade UK

• Increasing prevalence of cases to court • 18 cases 2016, 6 2008 (CAFCASS)

• Prolonged court process• 2005, 2008, 2011 – appeal a day later• Now 2-3 weeks whether to appeal, even when leave declined• Cases now seem automatically to Court of Appeal, Supreme Court & Europe…

• Print media more invasive

• Social media…

The Children Act (England and Wales—1989 and 2004; Scotland—1995)

• Statutory framework for children’s services delivery, & rights & responsibilities of parents

• No specific provision for withholding/withdrawing but enunciates principles that underpin practice:

• Child’s welfare paramount when making decisions about child

• Particular regard paid to ascertainable wishes & feelings of child and harm child suffered or at risk of

• Parental rights & duties exercised in child’s best interests

2) UK Law

UN Convention on the Rights of the Child & Human Rights Act 1998

• UNCRC applies to all children & young people < 18 (Ratified UK 1991)

• Can’t be directly applied in UK courts

• UK government

• bound to honour it

• make laws, policy & practice applying to children compatible

• UK Human Rights Act (HRA) 1998 incorporates & gives effect to rights & freedoms guaranteed by European Convention on Human Rights (ECHR)

• Most relevant convention rights with respect to decisions to limit LST in a child:

• Article 2: the right to life & positive duty to protect it

• Article 3: the prohibition of inhuman & degrading treatment

• Article 5: the right to liberty & security of the person

• Article 8: the right to respect for private & family life

• Article 9: the right to freedom of thought, conscience and religion

• Article 14: the prohibition of discrimination in respect of enjoyment of the other rights

UK Law

• Despite recent controversy & some claims

• Law settled in this area• No to harm threshold

• No to parents having rights over their child

Decisions must be made in the child’s best interests

Ultimately courts will/must adjudicate in dispute

More importantly – clinicians cannot do what they think is not in the child’s best interest, irrespective of parents’ views!

(what about slightly less optimal interests…or least worst interests….)

UKSaatchi Medical Innovation Bill became:

Access to medical treatments (innovation)

Act 2016

USA Federal S.204 - Trickett Wendler, Frank

Mongiello, Jordan McLinn & Matthew Bellina

Right to Try Act 2017

‘Legalizing Burzynski practice model’

vs.

Empowering terminally/seriously people

3) INNOVATION

•

•

•

•

••

•

•

Dr Sydney Farber

THEODORE ROOSEVELT

OPTIMISM IS A GOOD CHARACTERISTIC, BUT IF CARRIED TO AN EXCESS, ITBECOMES FOOLISHNESS.

•

24 years later, perhaps we are attempting to meet his request?

2008-9 Bioethics team at GOSH

Developing framework for innovative therapies in children

• Take the best of research ethics

• Review by independent body

• Consenting process

• Scientific basis for new intervention

• Dissemination of outcome

• Take the best of normal practice

• Consenting process

• Standards

• Governance arrangement

• Resource utilization

• Non treatment pathway

Essential ethical considerations for ethics committee in considering compassionate use of experimental therapy in children(Joe Brierley. Vic Larcher. Arch Dis Child. 2009 Sep;94(9):651-4)

1. Clear clinical need for this particular child

2. Realistic & reasonable scientific basis for proposal, verified by independent 2nd opinion

3. Realistic expectation child likely to benefite.g. evidence from adult, lab or animal research

4. Consensus in treating team that what is proposed is in child's best interests

5. No reasonable or feasible or safer alternativesmight achieve same result

6. Parents (& child) competent/able to understand AND do understand a) procedure experimental; b) possible risks, benefits & alternatives:

(i) Allowing for pressures produced by condition nocoercion & can withdraw any time

(ii) Information standard that which this family need to consent

7. Resources utilized by offered treatment justified against likely success & those of alternatives

8. Results reported, whatever the outcome

Innovative Protocol use

• > 50 times in 8 years (15 in 2017)

• 1ST child tracheal transplant

• CNS infusions for Gaucher’s

• Immunology gene therapy

• 1st in man, or in children

• Clinicians Feedback

• ‘Value chance to debate’

• ‘Really helpful framework’

• ‘Feel very supported’

• Less at risk of censure/prosecution (c.f. Saatchi bill!!)

LARCHER V, TURNHAM H, BRIERLEY J. 2017. DISEASES DESPERATE GROWN BY DESPERATE APPLIANCE ARE

RELIEVED, OR NOT AT ALL: MEDICAL INNOVATION IN A CHILDREN'S HOSPITAL. BIOETHICS SEP 5 2017(HANS SCHWAGER AWARD IN BIOETHICS)

Parents –(also members of our Ethics team)

• ‘Our child seemed valued’

• ‘Really supportive’

Bioethics: OMG …..

• Global reach

• Populism & disregard for experts/the elite

• Vatican Bioethics Council vs. the Pope

• International 2nd opinions • without full facts, & with clear conflicts of interest

• Staff support…• Moral distress

• Attacks on staff

• Social media campaigns, bedside violence, filming by bedside• Hospitals have a duty to protect staff

– but can be very hard with parents

• Parents of very sick children used by others– have voice, but lose control

4) International Controversy & social media

Bioethics: OM (F) G …..

• Global reach

• Populism & disregard for experts/the elite

• Vatican Bioethics Council vs. the Pope

• International 2nd opinions • without full facts, & with clear conflicts of interest

• Staff support…• Moral distress

• Attacks on staff

• Social media campaigns, bedside violence, filming by bedside• Hospitals have a duty to protect staff

– but can be very hard with parents

• Parents of very sick children used by others– have voice, but lose control

4) International Controversy & social media

Challenge from particular groups…

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”

― Atul Gawande, Being Mortal: Medicine and What Matters in the End

Social Media – Lessons Populism vs. public services

(I) Clear moral distinctions:

• The out-group: State healthcare, Drs, nurses, Judiciary & most politicians = evil & damaging

• The in-group: ‘Ordinary’ people wronged & vulnerable whose voices must be heard

• Holding child hostage”, condoning “disposal of the disabled”

(II) Sustained & evidence-free blame attribution to maintain moral distinctions

• e.g. accusing clinicians of giving morphine through callous design, vague & general allegations of meting out ‘death penalty’

(III) Anecdotes to reject professional expertise

• Response to discussion about head measurements & brain scans - photo-edited social media pictures sent to judge showing “how he’s grown”

• Swelling/oedema - “he’s a chunky monkey”

Das R. Populist discourse on a British social media patient-support

community. Discourse, Context & Media 22 February 2018

Social Media

(IV) Circulation of headlines & stories from well-known populist media sources

• Other sources = ‘hate’• Stories mediated selectively, filtering those

aligned with judiciary/medical professionals’

(V) Sporadic critical involvement of populist public figures (sound bites/tweets)

• Repeatedly mobilised by group to aid case ‘against stripping parental rights’

• Interventions support idea UK NHS & court commitment to put rights & interests of child ahead or separate from parents make hospitals frightening & terrifying

(VI) Climate of extreme like-mindedness • Heightened emotional registers deriving energy

from shared personal stories (parents critically-ill/previously ill children)

• Vast majority unrelated medical context

• Personal anecdotes little scientific bearing to case but monumental emotive significance

(VII) Core social media platform architecture appropriated through strict gatekeeping strategies

• Sign up to Facebook group contingent on answering 3 questions Re supporting & circulating specific stance

• Dissenting comments = trolling & poster blocked –including other bereaved families

Das R. Populist discourse on a British social media patient-support

community. Discourse, Context & Media 22 February 2018

2nd opinion issues: Mr Justice Hayden = JH

(1) Deception & competence

• Dr H (Munich) - fell below expected professional standards

• H admitted going to AH in clandestine manner; posing as family friend & claimed seen child’s files when had not & produced travel plan containing inappropriate & ineffective “medical regime”

• H agreed…..he’d deliberately withheld professional status from doctors & staff

• JH “he has failed the parents, the court but most importantly, Alfie”

(2) Cultural imperialism

• Professor H (Munich) –parents asked to “assist them”

• used “inflammatory” language in report

• used case as “platform” for own beliefs

“Because of German history , we’ve learned there are some things you just don’t do with severely handicapped children

“society must be prepared to look after severely handicapped children

and not withdraw life support against parents’ will, if uncertainty of

feelings of child“

• “…no part of his function.. to utilise ..case as platform for own beliefs

• “I found… paragraph to be inflammatory & inappropriate, not least because views expressed bear no relationship to, and do not engage with, facts of this case”

5) Second opinions

2018] EWHC 308 (Fam) Alder Hey Children’s NHS Foundation Trust - and (1) Mr Thomas Evans, (2) Ms Kate James, (3) Alfie Evans (A Child by his Guardian CAFCASS Legal)

MORAL DISTRESS, TRAUMA & BURNOUT IN STAFF IN RELATION TO CHANGES IN PICU OUTCOMES, CHALLENGING CASES AND MEDIA INVOLVEMENT IN DISAGREEMENTS ABOUT END-OF-LIFE CARE. Brierley J; Rutt M; Berger Z; Titman P; Colville G. Pediatric Critical Care Medicine: June 2018 (19):6s:146

• Aims & Objectives

• Changed ICU outcomes last decade

• Disagreements about WLST rare but occasionally protracted,

distressing for all, harmful to child & may need court

• Little known about impact & of associated social/other media

campaigns on staff

• Methods: 50 staff (39 nurses; 9 doctors, 2 AHPs):

• Moral Distress Scale-Revised questionnaire;

• Trauma Screening Questionnaire

• Abbreviated Maslach Burnout Inventory

• & several open-ended ‘experience and what has been

learned questions’ 3-months after final court decision

National Survey of PICU Staff in UK (April 2018) n=1656

6) Staff

What about the future

• ICU – worsening….• Campaigns against PICUs US, UK, Australia• Seeing group referral to regulatory bodies

• Public confidence vs. professional sanity• Phone calls from overseas screaming at student

nurses on unrelated wards calling them murdering &%*$%$&…

• Abusive language posted on sick children’s blog sites• Other bereaved parents criticized for giving up• Death threats to staff and their families• Rounds/care tweeted with cut videos

• 2nd opinions need professional standards

• Limited to country? Impossible??• But understand legal differences

• Must D/W team see scans and data• Actually meet the patient, family and team?

• Conflicts of interest declared

7) The future

Summary: What a world, what a world…

• Medicine has changed, society has changed

• Globalization, innovation, disregard for experts, loss of

respect for others, social media…

• Clinical teams – respectful silence about child and

families in their care should continue

• Staff support – Medtrim, other recovery lessons

• Other families (sick children/staff) facing abuse is the

saddest part

Roxanne has the answers