Intensive Care Decisions

for Fragile Neonates

Annie Janvier, MD, PhD
 No Conflict of Interest
• I have no financial relationships with a
commercial entity producing healthcare-
related products and/or services.
 Objectives
• End of life decisions for neonates
• How we value the life of neonates
• Parental experiences
• Practical recommendations
 Medical developments and
technology
• More interventions: increased survival
– In neonatology and elsewhere
– Neonates frequently died at 35 weeks

• Increased survival, but often increased risks

• Difficult decisions
– These include going for surgery, and risks of
anesthesia
To treat or not to treat?
(US 1984 amendment)
Treatment Parents Parents
efficiency want Tx refuse Tx
Beneficial Yes Yes

Grey zone Yes No

Futile No? No
 Is it futile?
What does futility mean?
QUANTITATIVE FUTILITY
• Physiologically futile: (doesn’t works)
• Ex: brain transplant
• Works < 5% of the time
• Ex: some bone marrow transplants

QUALITATIVE FUTILITY
• Not beneficial to the patient (it is not worth it)
• Ex: CPR on a 90 y old with metastatic cancer
• This is a value judgement
 23 week baby:
beneficial, “grey zone” or futile?
 What is the survival in the US?
23 weeks: Between 0 and 70%
• Kaempf et al: recommends comfort care at 23
weeks = 29% intervention and 0% survival
• Batton et al: 100% resuscitation = 40% survival
• Bell; Iowa: 70% survival with good outcomes
22 weeks (NEJM, Rysavy MA et al, May 2015):
intervention: 0-100%; survival between 0 and
40%
• Parents are not aware of these differences
What is their quality of life?
• Health related QOL: worse than
individuals born term
• Subjective quality of life: similar to
« controls » born term
– Having friends, going to school, particiating in
activities
– Living independantly, having a family, an
education
 23 week baby:
Difficult decisions
 Solution?
Simple rules for complicated decisions
(GESTATIONAL AGE BASED MANTRA)
Some variation of:
• Futile: 22 weeks
• Grey zone: 23 and 24 weeks
• Beneficial: 25 weeks and above
Interventions are not always futile at 22 wks
Interventions at > 25 weeks are
not always beneficial
 Gestational Age
Not accurately known!
• Apart from IVF, best estimates of GA are
• +/- 5 days (95% of the time) if ultrasound
between 9 and 12 weeks
• +/- 10 days if ultrasound between 16-20 wk
• Estimated fetal weight +/- 15% (80% of the
time)
• Inaccurate GA changes at midnight
 Huge practice variations

• In the “rich” world, survival at 24 weeks is

between 0 and 84%
• Unlike elsewhere in medicine, this is mainly due
to local philosophies
– not due to competence, knowledge, or
financial incentives
 This is true for many decisions made
for fragile babies
• Complex cardiac interventions
• CNS shunt placements
• Dyalisis
• ECMO
• G-tube
• Tracheostomies
• Interventions for children with trisomy 13 and 18
• etc
 It seems…
• The majority think resuscitation is in the best
interest of sick babies
• YET, the majority would accept not
intervening for neonates than for patients
with similar or much worse outcomes
– The best interest principle is not used for neonatal
resuscitation
• This is true in many culturally different
countries
 Facts or values?
• Statistics reflect our values
• Our values create facts that are then used
to support our values
– “Self fulfilling prophecy”
– Opinions-philosophies are a major cause of
mortality for fragile neonates

• Parents are generally not aware of this

– What does informed consent mean in this context?
 Policy statements in neonatology
• Many policy statement exist stating when
resuscitation is acceptable, optional or « futile »
for sick neonates
– 22 wks: no (survival 20%)
– 23-24 wks: according to parents (survival 35-84%)
– 25 weeks: yes (survival > 80%)

• Elsewhere in medicine, the grey zone is grey, no

simple rules for complicated ethical decisions
Even for very sick adults
 Policy statements:
neonates vs older patients
For older patients, 10-50% survival with 50%
outcome without disability is considered
very acceptable
– Brain cancer
– Severe brain trauma
– Neuro-degenerative conditions
– Strokes…
 Disproportionate care or
life-saving device?

2019. 4. 9. 22
 If we treated older patients like
preemies: profound disability
(Stephen Hawking)

2019. 4. 9. 23
 Disproportionate care?
(Chantal Petitclerc)

2019. 4. 9. 24
 Burdensome treatment
(pain and suffering)
(Christopher Reeves)

2019. 4. 9. 25
Prolonging life or prolonging death?
(Terry Fox)

2019. 4. 9. 26
 What about the parents?
• More optimistic than physicians
• More tolerant of disability
• They do not seen QOL the same way
physicians do: higher estimates
• Children also judge their QOL higher
(than rated by providers)
Practical recommendations
 The standardized prenatal
monologue
23 weeks Intervention,
About 15%-76% survive
(local stats)

Comfort care:
Baby dies IF survival

1 in 3 have a
BUT, she might still 1 in 2 are « minor »
die in the NICU « normal » disability:
1 in 4 have major disability -Hyperactivity
-CP (8-10%) -Dyslexia
-deafness (3%) -Behavior
-blindness (2%) - Learning
-developmental delay difficulty
- Bla bla bla
 Speaking about life and death
Contrast between medical view and parental view

MEDICAL SYSTEM: Standardization

• Communicate to parents all possible adverse
outcomes and alternatives
• Verify parents have understood
• In a neutral and empathetic manner

PARENTS
Personalization, individualization, relationship
 What parents want to know
(not in policy statements and decision aids)

• How can I be a parent in the NICU?

• Can I see the unit?
• How will I feed my baby?
• How will my baby look like?
• Where will we live while the baby is here?
• When can I visit the NICU?
• Can my family come?
• How can I reorganize my life?
 What parents also want to know
• What will that mean for our family
• How are other families?
• Will she be happy? Will we be happy?
• Will we be OK?
• How can I be the mom of a dead baby?
• Can I be the dad of a disabled girl?
• Is it better if she dies without or with intensive
care?
– Regrets, couple, me, my other kids…
 A DIFFERENT VIEW

Our child is not just a gestational age. A first-hand account of what parents
want and need to know before premature birth
Katharina Staub (katharina.staub@cpbf-fbpc.org), Jason Baardsnes, Nina Hebert, Michael Hebert, Stephanie Newell, Rebecca Pearce
Canadian Premature Babies Foundation-Fondation pour Beb es Prematur es Canadiens, Sherwood Park, AB, Canada
« We did not have a hundred babies. We had two but 50%
had died. One was left. What did that mean for Maren? »

(Jason Baardsnes and Rebecca Pearce)

 Ongoing research by many groups
• Transfer of information / numbers
• Speaking to « the rational » parent
• Being neutral and unbiased
– Not what parents want
• Parents also make decisions with their hearts
 Are emotional decisions bad decisions?
• When emotions are discussed in the informed
consent process, they are often thought to
negatively influence competence
• When parents have to decide between certain
death and uncertain life, most become highly
emotional.
 Are emotional decisions bad decisions?
• Most important decisions we make in life
are not rational
– We evolved to make survival decisions with
our emotions (prefrontal cortex vs amygdala)
• Powerful emotions that influence us may
be as morally and scientifically informed
and defensible as any algorithm
 Shared decision making

• The new paradigm

• Share goals and values, offer options and
decide with parents according to their values
 Personalized decision making
rather than shared decision making
• The majority of decisions are not shared
– « informed non dissent »
• For life-or-death decisions, many parents do
not want «shared» decision-making

Who decides?
 The medical team decides
“It was clear for us we did not want to decide the
day our daughter would die. We trusted the
doctors and nurses for that, to tell us when it was
time. They gave us some time with her and we
will be forever grateful for that”
 God decides

“We made it very clear to them that it was God's

call not theirs […]. They were very compassionate
and honored our request. […] She touched them
too during her short life. God helped.”
 «Fatalism»
nature or « the baby » decides
• “Nature decided when it was time and nurses were there
for him and for us.”;
• “The approach that our pediatrician took (that aligned
with the philosophy we had for Noah's life) - basically that
we'll listen to Noah and what he and his body are telling
us and let HIM lead us towards the decisions that are best
for his quality of life.”;
• “Our favorite nurse told us that Owen will tell us what he
needs. And he did. Owen took himself off his vent, he kept
wiggling out of his CPAP and he decided it was time to go
back Home to his Maker.”
Alternative to current recommendations:
No recommendations or
Guidelines for all neonates with uncertain
outcomes
Janvier A, Barrington KJ, Farlow B. Communication with
parents concerning withholding or withdrawing of life
sustaining interventions in neonatology. Seminars in
Perinatology 38 (2014): 38-46

Haward MF, Gaucher N, Payot A, Robson K, Janvier A.

Personalized Decision Making: Practical
Recommendations for Antenatal Counseling for Fragile
Neonates. Clin Perinatol. 2017 Jun;44(2):429-445
Avoid the neonatal monologue
& universal use of decision aids
 Personalized communication
controlled improvisation
• Adapting to families is key
– Avoid box-checking menu of outcomes
– Some families may benefit from decision aids,
others may be harmed
Why do you think I am here?
« This happens to many women… »
« There is nothing you could have
done to prevent this »
 « Do you have a name? »

Tell me about your pregnancy / baby

 What scares you the most?
Is there something you think you cannot deal with?
 What are your hopes for your child?
• Answer to « unrealistic hopes »: « we also
hope this will happen, is there anything else
you hope for? »
 Personalize the information
• « Do you want information? »
• « Some parents want a lot of information… »
• « Other parents want to know the big
picture… »
• « What kind of parents are you? »
 Personalize decision making
• Some parents…
– Want to decide with us
– Want to decide on their own
– Want us to decide

• What kind of parent are you?

In the NICU
« How do you find Victoria? »
« I am concerned »
« Do you think she is tired? »
 Control /good parent
• « You did not decide … »
• « If love could heal, he would be home »
• « We hoped that, but… »
• « We thought it may help and hoped together
but»
• « You gave him a chance and was always there
for him. You have gone to the moon and
back…. »
Avoid
• Too many people (the McDeath trio)
• Appearing from the ivory tower
• Communicating too late
• DNR obsession
• Words
– « Doing nothing », « Doing everything »
– « No hope »
– « Nothing we can do »
Offer recommendations/a plan if
parents want one
« What I understand from how Victoria is and
what you are saying is that…. » or
« I also find her tired »

• What do you hope will happen, won’t happen?

• What can you do? What will you do?
• Not a list of everything you will not do
Adapt the details to the family
 Conclusions
• What is described as being « beneficial »,
« futile », « grey zone » is relative and
subjective
• Physicians determine the grey zone
– What is “worth it”
• Inside the gray zone, parents may decide
• The parental view and the medical view
are often not aligned
 Conclusion
• Personalized information and decision-making
decreases conflicts with families

• Listen to families
• Don’t be afraid to speak about uncomfortable
things
• Stand by families
Questions?
 Ethical analysis:
The best interest principle
Decision making for incompetent patients

• Guiding principle = patient’s best interest

• If an intervention is in an incompetent
patient’s best interest -and serious harm
would follow non-intervention
• Than non-intervention is generally not
acceptable
 Estimations of best interests for
incompetent patients
• Anonymous questionnaire to physicians in 8
culturally different countries
• “You are a physician working in an ER in a
tertiary care center…”

• 8 Critically ill patients of different ages with

outcomes explicitly described; all arrive and
– need immediate intubation + resuscitation
– Have potential serious neurological
consequences
– Are currently incompetent
 4 Children
3 have a 50% survival.
If they survive, 50% will be “normal” and
25% will have severe disability:
• 24 week preterm
• Term baby with a severe malformation
• 2 month with meningitis
 1 child has preexisting disabilities and a
50% survival. If survival: 50% risk of further
impairments
• 7 y old: cerebral palsy, deafness,
hyperactivity, learning disability with a new
head trauma
 Results:
Physician responses, n = 2230
70% neonatologists
Response rate = 66%
Is resuscitation in the patient’s best
interest?
• 24wk: 70%
• Term infant: 76%
• 2 month with meningitis: 94%
• 7y old with severe disabilities: 93%
 Would you accept to withhold
resuscitation and give comfort care?
• 24wks: 76%
• Term: 60%
• 2 month meningitis: 20%
• 7y old with severe disabilities: 25%
 In what order would you intubate
patients if all needed intervention at
the same time (average ranking)?
TRUE IN EVERY COUNTRY
1st: 2 months (meningitis)
2nd: 7 y (multiple severe disabilities)

8th: 80y (dementia and a new stroke)

Why are babies less valued?
 “Not the same kind of person”
(Amélie Dupont-Thibodeau; n = 102)

• Lack of personhood / experience /

attachment, interactions (70%)
– “interchangeable non-persons”

• Personalization of the vignettes when it is not a

neonate; for the neonate, personalization of
the family (32%)
 “Not the same kind of person”
• They do not look the same (22%)

• “How we react to their death” (38%)

– “easier to replace them”

• Value of a short time is less for a neonate than

for an older child (17%)
– Specially if this time is all spent in the NICU
 Why are neonates devalued?
Gut feelings
• “Gut feeling”, “I am biased”, “this is
subjective” (51%)

• “Did not believe outcomes” (40%)

• Did not read outcomes, only read “24
weeks” (40%)
 “Not the same kind of disease”

• Responsibility: Saving vs creating

• Easier to discriminate against possibility of

handicap than confirmed handicap

• Cultural, anthropological, sociological,

evolutionary?
–Were we “built” this way?