An uncertain future: outcome after
treatment limitation discussions
Prof Dominic Wilkinson
28/6/2017
Director of Medical Ethics
Oxford Uehiro Centre
[email protected]
@Neonatalethics
Outcome of discussions
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What do we know?
What don’t we know?
What does it mean?
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What do we know about end of life decisions in NICU?
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2000 – Australia
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111 infants 3 yrs
6% mortality
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2006 – US/Canada/Netherlands
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183 infants, 4 NICUs, 1 year
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Why is treatment withdrawn?
Verhagen J Pediatrics 2010
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Methods
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South Australia
1.6million
18,000 births/yr
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Methods
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2001-2006
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Moderate/severe HIE (II/III)
Or
Moderate/severe IVH (III/IV)

Mechanically ventilated for at least 6 hours
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Eligible Newborns
N=193
Included Newborns with severe brain
injury
N=145
TLD
N=78/145
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Excluded n= 48
Not ventilated n= 40
Ventilated <4h: n= 5
Notes incomplete: n=1
Misclassified as HIE:
n= 2
No TLD
N=67/145
67 HIE
62 IVH
8 IVH/PVL
8 ICH
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Short term outcome
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Included Newborns with severe brain
injury
N=145
Deaths
TLD
N=78/145
Injury
TLD/total
HIE 2
2/35
HIE 3
30/32
PIVH 3 uni
0/5
PIVH 3 bilat
5/13
PIVH 4 uni
25/38
PIVH 4 bilat
PIVH+PVL
5/6
6/8
Other ICH
5/8
Survived
N=22/78
No TLD
N=67/145
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39% died
None died without a TLD
None died while receiving CPR
72% of those who had TLD died
Died
N=56/78
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Infants who died
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What about survivors?
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78 infants – TLD
22 survived to discharge

3 died at home in first 3 months
 1 died in PICU at 3 months

18 long term survivors
13 – treatment continued
 5 – treatment limited
 No CPR/escalation
 No CPR
 No CPR/reintubation
 No CPR/reintubation/NGT
 No CPR

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Long term outcome
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2 Lost to f/u
Injury
Survived /
total TLD
Outcome
HIE 2
2/2
GOS 1: n=1
GOS 4: n=1
HIE 3
8/30
GOS 4: n=5
Died: n=3
PIVH uni
0
0
PIVH 3 bilat
3/5
GOS 2: n=2
N/A: n=1
PIVH 4 uni
7/25
GOS 1: n=3
GOS 2: n=1
GOS 4: n=1
N/A: n=1
Died n=1
PIVH 4 bilat
0
0
PIVH+PVL
1/6
GOS4: n=1
Other ICH
1/5
GOS 2: n=1
4 died
8 severely disabled
4 mildly disabled,
4 normal
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Case 2
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Grade 3 HIE
Extubated d6
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D12 discussion about withholding ventilation/NGT feeds
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“Parents opting for continued intensive care”
“Parents opted for continued intensive care including reintubation”
6 years
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Spastic quadriplegic CP GMFCS 5
 Tracheostomy and home ventilation
 Gastrostomy feeds; Seizures; no meaningful communication
Continuing full resuscitative measures
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Case 12
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24 week 640g
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Grade 4 unilateral IVH with midline shift on day 2
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Developed NEC on day 57
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2 Discussions about withdrawing vs continuing
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Decision unclear
D58 further discussion
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Decision – not for CPR/escalation
For laparotomy
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9 years – CP GMFCS 1 (mild diplegia)
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Mild intellectual disability, special class in mainstream school
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Short bowel syndrome
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5
7
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18 centres
3434 infants 22-28 weeks gestation, surviving for >12 hours
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Predicting death?
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Predicting disability?
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Variation
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Ethical implications

Outcome
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Importance of collecting data
 Implications for ethics of discussions?
 Communication and uncertainty
 Support for families
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Variation
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
Acknowledgments:

Marcus Brecht
 Wellcome Trust

Contact: [email protected]


@NeonatalEthics
Questions…
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