Lecture held at the UENPS meeting in Valencia, 24 Nov 2016, in a workshop on Ethics in neonatal care.

1. Resuscitation and non-resuscitation
of extremely preterm infants
STEFAN JOHANSSON, MD PhD
Sachs Children’s Hospital
Karolinska institutet
Stockholm, Sweden

2. Get in touch!
stefan.johansson@ki.se
@johansson247
slideshare.com/stefanjohansson

3. I HAVE TWO INTELLECTUAL
CONFLICTS OF INTEREST
COI

4. www.99nicu.org

5. www.ebneo.org

6. 99nicu Meetup
12-15 June 2017
Stockholm, Sweden
EBNEO conference
10-12 Nov 2017
Hyderabad, India

7. Outline
1. Differences between countries
2. Sweden - controversies and consensus
3. Neonatal Ethics Survey (UK – NL – Swe)
4. Conclusions and Questions

8. Guidelines differ
• Systematic review of 34 guidelines
– 21 suggested comfort care at 22 weeks
– 20 supported active care at 25 weeks
• Many cited national survival rates but few
discussed potential biases related to
– gestational age determination
– definition of still-/live-birth
– denominator
Pediatrics 2015. doi: 10.1542/peds.2015-0542

10. Year 22w 23w 24w 25w
Belgium 2014 CC CC PW PW
Finland 2014 IND IND AC AC
France 2010 CC CC PW AC
Germany 2008 IND IND AC AC
Ireland 2006 CC CC PW PW
Italy 2008 IND IND IND IND
Netherland 2010 NR NR AC AC
Poland 2011 CC CC IND AC
Portugal 2012 CC CC AC AC
Spain 2004 CC NR NR NR
Sweden* 2016 IND AC AC AC
UK 2014 CC IND IND AC
CC comfort care
PW parent’s wish
IND individualized
AC active care
NR no recommendation
* (edit/update by me)
Pediatrics 2015. doi: 10.1542/peds.2015-0542

11. Guidelines impact outcomes
NEJM 2015. doi: 10.1056/NEJMoa1410689

12. Guidelines impact outcomes
NEJM 2015. doi: 10.1056/NEJMoa1410689
• Survival increased
with increasing rate
of active treatment
• Active treatment
accounted for 78% of
between-hospital
variation in survival

13. Delivery room management
ADC FN 2016. doi: 10.1136/archdischild-2015-308728
• EPIPAGE-2 and rates of withheld / withdrawn
delivery room treatment of live-born infants
– 22-23 weeks >90%
– 24 weeks 38%
– 25 weeks 8%
– 26 weeks 3%

14. ”harms of the gestational age label”
”…policies do not just reflect
outcomes, they shape them…”
"…labelling infants and taking life and
death decisions according to …
gestational age is scientifically flawed
and ethically questionable...”
Annie Janvier and John Lantos
ADC FN 2016. doi: 10.1136/archdischild-2016-310466

15. Decision-making and parents
• Survey of 19 European countries:
ultimate decisions were taken by
– the attending doctor 16
– the team + parents 2
– ”the High court” 1
• Only 3 countries reported
that parents had been
involved in the development of guidelines
ADC FN 2014. doi: 10.1136/archdischild-2013-305191

16. SWEDEN
• Health care is organised
within 21 counties.
• Counties are grouped
into 7 regions, each with
one level-3 facility*
*Karolinska/Stockholm has two level-3 NICUs

17. • In the past, different
ethical traditions led to
different management
– the ”North”: resuscitate
always as we cannot
foresee who will benefit
– the ”South”: resuscitate
if benefits seems better
than risks
*Karolinska/Stockholm has two level-3 NICUs
Small country - different views

20. Infant mortality; EXPRESS cohort
Acta Paediatrica 2014. doi: 10.1111/apa.12421
60
34
67
38
51
64
31
15
20 23
19
13
20
9.3
22-24 weeks 25-26 weeksInfant mortality
rates by region,
in 707 live-born
infants.

21. 2.5y outcomes; EXPRESS cohort
Risks of mortality/NDI
at 2.5y, by high/low
activity strategy, in
707 live-born infants.
HIGH LOW ADJ OR*
22-24w 62% 79% 0.48 [0.27-0.84]
25-26w 36% 37% 0.80 [0.52-1.23]
*Adjusted for gestational week, multiple birth, gender, birth weight SDS,
maternal education, paternal education, and ethnicity.
Pediatrics 2015. doi: 10.1542/peds.2014-2988

23. Consensus in Sweden 2016
• Antenatal transfer to level-3 at 22+0
• Antenatal steriods considered from 22+0,
and recommended from 23+0
• Neonatologist present at deliveries from 22+0
• Resuscitation considered from 22+0, and
recommended for all from 23+0
• ”Information to parents essential”
Swedish Neonatal Society 2016. https://goo.gl/kvykpb

24. Non-resuscitation & withdrawal
• Swedish guidelines are specific on active care…
• …but unspecific on comfort care & withdrawal
– how to discuss and act if parents request that their
child would recieve comfort care only?
– how to discuss and act on withdrawal of care?
– how to principally frame such decisions?

25. Autonomy
Societal contexts
Resources
Best interests
Predictions
Ourselfes

26. NEONATAL ETHICS SURVEY
• In total, 162 participated
• Equally many male and female doctors
• 60% had worked ≥11 years in a NICU
• UK 22 consultants and 20 fellows
NL 42 consultants and 6 fellows
Swe 61 consultants and 11 fellows

27. UNPUBLISHED DATA
NOT FOR SHARING

28. Conclusions
• While guidelines are common, they commonly
differ within and between countries.
• Guidelines impact survival rates.
• Sweden had regional controversies
but has reached consensus.
• Swedish, British and Dutch infants seem to be
managed differently by gestational age.

29. Questions
• Why do guidelines differ?
• Should decisions be based on gestational age?
• How should we decide on resuscitation?
• How should we decide on non-resuscitation?
• What are decision-making rights of parents?
• How could we respect infants as individuals?
• Professional and/or public dialogue?