POSITION STATEMENT
Counselling and management for
anticipated extremely preterm birth
Brigitte Lemyre, Gregory Moore; Canadian Paediatric Society
Fetus and Newborn Committee
Posted: Mar 2 2017
Abstract
Counselling couples facing the birth of an extremely
preterm infant is a complex and delicate task, en­
tailing both challenges and opportunities. This re­
vised position statement proposes using a progno­
sis-based approach that takes the best estimate of
gestational age into account, along with additional
factors, including estimated fetal weight, receipt of
antenatal corticosteroids, singleton versus multiple
pregnancy, fetal status and anomalies on ultra­
sound, and place of birth. This statement updates
data on survival in Canada, long-term neurodevel­
opmental disability at school age and quality of life,
with focus on strategies to communicate effectively
with parents. It also proposes a framework for de­
termining the prognosis-based management
option(s) to present to parents when initiating the
decision-making process. This statement replaces
the 2012 position statement.
Key Words: Decision making; Extremely preterm
infant; SDM
Background
Early preterm birth poses medical, social and ethical
challenges and opportunities. Although extremely
preterm infants have high mortality and morbidity rates
compared with term infants, prognostic uncertainty ex­
ists in each individual case.[1] This uncertainty ac­
counts, in part, for the ethical challenges associated
with determining what course of action is in the best in­
terests of a particular newborn.
Some argue that extremely preterm infants deserve
the same aggressive intensive care offered to older
children with comparable risks of morbidity and mortal­
ity. Every infant, situation and family is unique and de­
cisions regarding management can vary substantially
among families.[1]-[3]
There is no universal agreement on approach and
management.[4] Parents and health care professionals
(HCPs) each have their own personal and professional
experiences, value systems and interpretations of rele­
vant medical data shaping moral judgments regarding
best interests. HCPs rank the quality of life (QOL) of
adolescents born extremely preterm lower than par­
ents and children with related disabilities rank it them­
selves.[5] Recent research has put emphasis on the
role of the family in decision making, how to communi­
cate with families and the importance of sharing QOL
information with parents. Also, the survival of infants
born at 22 weeks GA has been increasingly reported in
the last few years.[6][7] HCPs must remember that most
births involve the opportunity for a family to welcome a
child into the world with hope, even one born extreme­
ly preterm.
This position statement provides updated recommen­
dations to help HCPs, together with families, guide
management of the anticipated birth of an extremely
preterm infant. Statement objectives are to: review fac­
tors to consider in the decision-making process, pro­
vide a framework for engaging parents in the decisionmaking process and suggest levels of care based on
the estimated risks of mortality and neurodevelopmen­
tal disability (NDD). It does not address obstetrical
care of the mother in detail. For present purposes, the
terms ‘parent’ and ‘family’ can refer to any person or
couple expecting the birth of an infant or to those
whose child has been born.
Recommendations focus on infants to be born be­
tween 220 and 256 weeks GA. Cases exist at any GA
where a devastating congenital lesion, clinical situation
or family circumstance leads to the consideration of
FETUS AND NEWBORN COMMITTEE, CANADIAN PAEDIATRIC SOCIETY |
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palliative care. Nationally, palliative care is accepted as
the usual approach when an infant is born ≤21 weeks
GA.
Methods
Search strategies were conducted between 2013 and
2015, using MEDLINE, EMBASE, Cochrane Database
of Systematic Reviews and CENTRAL. Search terms
included: outcomes (NDD at 4 to 8 years of age and
QOL) for infants born extremely preterm; antenatal
corticosteroid (ANCS) use and risks of maternal mor­
bidity related to delivering preterm; and shared deci­
sion making and communication with parents. Regard­
ing studies related to NDD, the age range of 4 to 8
years is more predictive of long-term disability than fol­
low-up at an earlier age.[8] To ensure sufficient breadth
of expertise, national stakeholders provided input
through a consultation process, which included the use
of validated tools. Definitions (GA, NDD, early inten­
sive care and palliative care) can be found in an online
appendix.
Care of the mother at risk for extremely
preterm birth
Assessing gestational age
Ultrasound is the most accurate method for establish­
ing GA (aside from in-vitro fertilization).[9] First
trimester crown to rump length is the most accurate for
dating within 3 to 8 days.[9][10] The degree of impreci­
sion increases with advancing GA (+/- 10 days at 16 to
22 weeks and +/- 2 weeks at 24 weeks).[11]-[13] Despite
these limitations, establishing an accurate GA is crucial
for counselling, management and support of the family.
Place of care
Rates of neonatal mortality and morbidity decrease
when extremely preterm infants are born at tertiary
perinatal centres rather than at non-tertiary centres.[14]
Transferring women at risk for extremely preterm birth
to tertiary perinatal centres improves maternal care
and offers opportunities for counselling by maternal-fe­
tal medicine specialists and neonatologists. When
transfer is not possible and delivery at a non-tertiary
centre is expected, management decisions for mother
and infant need to consider availability of resources
and the possible limitations of setting and local exper­
tise when determining the infant’s prognosis.
Antenatal corticosteroids
Debate continues concerning the benefits of adminis­
tering ANCS to mothers during pregnancies before 24
weeks GA because they were excluded from studies
2 | COUNSELLING AND MANAGEMENT FOR ANTICIPATED EXTREMELY PRETERM BIRTH
reported in the National Institutes of Health’s consen­
sus statement.[15] Since then, animal data [16] and sev­
eral large retrospective cohort studies have suggested
that ANCS use improves survival rates for infants <24
weeks GA. [17]-[20] ANCS should be offered to women at
risk for extremely preterm birth at ≥22 weeks GA when
early intensive care is a management option. The tim­
ing of ANCS administration can be a challenge be­
cause the chance of delivering extremely preterm is
difficult to estimate and the maximal period of efficacy
for ANCS is reached within 7 days of the last dose.[21]
Although some trials of repeated ANCS have suggest­
ed potential for harm to the fetus and mother, one re­
cent systematic review showed lower risk for respirato­
ry distress syndrome and other neonatal morbidities in
infants born after mothers received one or more cours­
es of ANCS, without evidence of harm in later child­
hood.[22][23]
Mode of delivery
Three recent statements concluded that current evi­
dence does not consistently support routine caesarean
sections to improve neonatal outcome in extremely
preterm births.[1][24][25] Cesarean sections at an ex­
tremely early GA carry significant risks for the mother,
particularly when they involve a classical incision.[26]-[31]
Parents and obstetrical HCPs should decide jointly on
optimal mode of delivery by carefully weighing the po­
tential short- and long-term risks (including that of inutero fetal demise) against benefits.
Factors to consider in decision making around
management
Many medical and non-medical factors inform the
management of extremely preterm infants. Relying on
GA alone to predict outcome and generate recommen­
dations for management is erroneous. Medical consid­
erations include the risk estimates for infant mortality
and NDD and QOL in the longer term.[32] Explaining
the limitations of current data clearly and truthfully to
expectant parents is necessary.
Survival
One systematic review of survival focused on infants
weighing <1000 g or <28 weeks GA at birth.[33] Out of
51 studies, large variation in survival rates was found,
particularly depending on the denominator used. Varia­
tion was also possibly caused by differences in base­
line risk, antenatal and postnatal therapies, and/or ap­
proaches to withholding or withdrawing life-sustaining
interventions. The last two variables depend on individ­
ual HCPs and/or variation in approved practices in a
particular society.[7] Such potential for selection bias
underlines the need for HCPs to understand the limita­
tions of survival data and acknowledge them during
discussions with parents.
The most relevant data for parents in Canada are pop­
ulation-specific (i.e., Canadian) and, ideally, based on
local institution rates. Between 2010 and 2015, the
units providing data to the Canadian Neonatal Network
(CNN) recorded a total of 3830 live births at <26
weeks GA. Table 1 shows survival data to time of dis­
charge from NICU (stillbirths excluded). CNN reports
data for babies born at ≤22 weeks GA as a group. Sur­
vival at <22 weeks GA is extremely rare, with 4 report­
ed survivors at <22 weeks GA within the stated time
frame (P. Chan, personal communication). The CNN
website
(http://www.canadianneonatalnetwork.org)
provides up-to-date data.
Table 1: Survival rates in Canada in 2010-2015
GA
(weeks +
days)
Number of
live births
(n)
Infants who received pallia­
tive care at birth
(n, [% of live births])
Infants who received early in­
tensive care at birth
(n, [% of live births])
Delivery room deaths in new­
borns who received early inten­
sive care
(n, [%])
Survivors to NICU discharge in new­
borns who received early intensive care
(n, [%; 95% CI])
≤22+6
332
226 (68%)
106 (32%)
56 (53%)
19
(18%; 11, 25%)
23+023+6
723
196 (27%)
527 (73%)
82 (16%)
218
(41%; 37, 45%)
24+024+6
1200
68 (6%)
1132 (94%)
26 (2%)
753
(67%; 64, 70%)
25+025+6
1575
24 (1.5%)
1551 (98.5%)
66 (4%)
1225
(79%; 78, 80%)
Neurodevelopmental disability at school age
One recent systematic review and meta-analysis in­
cluded nine high quality cohorts.[34] Table 2 summa­
rizes the findings. While there was no statistically sig­
nificant difference in the risk for severe NDD by week
of GA, there was a statistically significant reduction of
6% in the risk of moderate-to-severe NDD with each
increasing week of GA. The most commonly observed
condition is cognitive impairment, followed by cerebral
palsy. Vision and hearing deficits occur less frequently.
The limitations of these data must be understood by
HCPs and parents. They include: small sample sizes
with wide confidence intervals at 22 and 23 weeks GA,
an unknown number of children with one versus multi­
ple impairments, variation in the definition and labelling
of NDD by HCPs (especially ‘severe’ versus ‘moder­
ate’) that may not reflect parents’ views or reality, no
information on mild or other types of impairment (e.g.,
behavioural), and the lack of correlation between de­
gree of NDD and QOL.[5] One example demonstrates
such limitations clearly: a child with severe cognitive
impairment and severe cerebral palsy and a child with
isolated uncorrectable deafness would both be classi­
fied as having severe NDD.
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Table 2: Severe or moderate-to-severe NDD rates at 4 to 8 years of age in surviving children born extremely preterm
Gestational age
Rate of severe NDD (%, 95% CI)
Rate of moderate-to-severe NDD (%, 95% CI)
22 weeks
(n=12 for both severe and moderate-to-severe NDD rates)
31%
(12, 61)
43%
(21, 69)
23 weeks
(n=73 for severe NDD rates)
(n=75 for moderate-to-severe NDD rates)
17%
(9, 28)
40%
(27, 54)
24 weeks
(n=175 for severe NDD rates)
(n=210 for moderate-to-severe NDD rates)
21%
(14, 30)
28%
(18, 41)
25 weeks
(n=337 for severe NDD rates)
(n=441 for moderate-to-severe NDD rates)
14%
(10, 20)
24%
(17, 32)
*Most children have no or mild NDD with estimates of: 57% at 22 weeks GA, 60% at 23 weeks, 72% at 24 weeks and 76% at 25 weeks. Mild NDD include neurobe­
havioural difficulties (e.g., autism, attention-deficit) that could challenge a child and their family.
Health status and QOL
A systematic review performed in 2013 assessed the
self-reported QOL of adolescents and adults who were
extremely low birth weight (ELBW) or very low birth
weight (VLBW) infants.[5][35]-[40] Nearly all studies
showed no significant difference in self-rated QOL
scores for former ELBW/VLBW infants compared with
full-term counterparts. Both groups rated their QOL as
good. However, using self-reported data prevented se­
verely disabled individuals from participating in some
studies. Two additional limitations are that no studies
focused solely on infants born at 22 to 25 weeks GA,
and the data drawn from VLBW/ELBW infants born in
the 1970 to 1995 time period are probably inapplicable
to babies born today.[41] One study providing a break­
down by GA found no significant difference in QOL
scores among adolescents born at 23 to 27 weeks GA.
[40] While the broad results suggest that most former
VLBW/ELBW infants rate their QOL as “good” in ado­
lescence/young adulthood, the individual QOL mea­
sures vary considerably.
Parental QOL
A systematic review performed in 2013 used different
reporting time frames and tools to evaluate QOL in the
caregivers of children born VLBW or ELBW.[42]-[53] The
time frames ranged from 1 to 25 years after delivery,
with mothers completing the vast majority of evalua­
tions. Most studies reported increased levels of parent
stress and a negative impact on family functioning and
finances for parents of children born as VLBW/ELBW
infants compared with parents of children born at term.
4 | COUNSELLING AND MANAGEMENT FOR ANTICIPATED EXTREMELY PRETERM BIRTH
Some effects did improve over time. One study[47] fol­
lowing these children into early adulthood found that
parents felt that their experience improved family
bonds, enhanced parental self-perception and im­
proved their parenting abilities. The effects of having a
VLBW/ELBW infant on divorce rate are equivocal. De­
spite finding an overall negative impact compared with
term controls, many parents of these children did not
report distress or an additional burden of care. Overall,
the QOL of parents appears to be highly individualized
and dependent on specific family situations and char­
acteristics.
Prognostic uncertainty
Although survival rates are improving and the chances
of surviving without moderate-to-severe NDD increase
with each incremental week of GA, such benefits can
be off-set by other prognostic factors. These variables
include: birth weight (in 100 g increments), singleton
(versus multiple) birth, the provision of ANCS therapy,
and gender (with male infants disadvantaged).[54][55]
Each of these factors can alter outcome by as much as
an additional week of gestation.
One Canadian graphic tool uses a combination of birth
weight and GA to predict survival, without short-term
morbidity, to hospital discharge.[56] Other prognostic
factors include the number of days into the week of
gestation (e.g., 231 versus 236)[57] and birth outside a
tertiary perinatal centre. Finally, the clinical course of
the extremely preterm infant in the NICU also influ­
ences long-term outcomes. Intracranial bleeding,
periventricular leukomalacia, retinopathy of prematuri­
ty, bronchopulmonary dysplasia, sepsis, days on me­
chanical ventilation and nutrition (feeding human milk)
appear to influence outcomes.[58]-[62] Other clinical di­
agnoses, parental socio-economic status and post-dis­
charge interventions can also influence outcomes, but
a detailed review of such factors is beyond the scope
of this statement.
Antenatal counselling and decision making
Communicating with parents
Parents facing the birth of an extremely preterm infant
should, ideally, have several opportunities to meet with
HCPs to share information and consider a care plan,
particularly as pregnancy progresses or new informa­
tion becomes available. Many parents report feeling
distressed, disempowered and grief-stricken when
faced with the possibility of delivering extremely
preterm.[63] Qualitative studies report a degree of ‘dis­
connect’ between the information HCPs provide and
what parents recall.[64][65]
Providing written information improves parental under­
standing and recall.[66] Consistency and accuracy of in­
formation provided are crucial for expectant parents.
Communication between obstetrical and neonatal
teams concerning consultations, along with clear docu­
mentation of the joint plan in the mother’s medical
chart, promotes consistency and adherence to the
plan.[24] Communicating with parents about periviabili­
ty, potential outcomes and difficult decisions requires
specialized training[67]-[69]: trainees must demonstrate
expert competence before performing consultations
without supervision. Involving trained peer counsellors
may provide further support to parents.
Shared decision making
Shared decision making (SDM) is the best approach
for preference-sensitive decisions, which include those
made when no clear evidence supports one treatment
over another, options have different inherent benefits/
risks, or parental values are involved. SDM can miti­
gate parental grief around end-of-life decisions, en­
hance knowledge of and satisfaction with care, aid de­
cision making that is consistent with parental values,
and foster collaboration with the medical teams.[70]-[73]
Key steps in the SDM process include: identifying the
decision to be made (choice talk); reviewing the op­
tions (option talk); and providing support for deciding
what matters most to the parents (decision talk).[74]
The HCP’s expertise lies in recognizing major biologi­
cal and medical factors influencing survival and longterm prognosis, while the family knows most about the
socio-environmental and familial characteristics that
will influence their infant’s outcomes (e.g., finances, re­
source availability, support from extended family).
Such characteristics are difficult to measure but must
all be considered in the SDM process.
Most parents wish for an SDM ‘model’ during antenatal
consultations, a practice strongly recommended in the
perinatal setting.[63][75][76] Some parents prefer a more
directive approach or recommendation. The approach
with each family should be individualized and based on
their expressed needs and wishes. Formal training in
SDM helps HCPs to optimize parental engagement in
the process to make informed decisions.[65] The par­
ents’ expectations regarding their own role in decision
making can never be assumed. Some parents are re­
luctant to carry the burden of decision making, while
others want to be involved but do not know how. [77]
Decision aids for parents facing imminent preterm birth
have been developed.[78][79] Decision ‘coaching’, where
trained HCPs provide parents with individualized, nondirective guidance, is often used in conjunction with
other decision aids to facilitate SDM.[80][81] Table 3 lists
strategies for communicating effectively with parents,
engaging parents in decision making, clarifying their
values and preferences, and guiding the prenatal con­
sultation.[64][82]-[86] SDM is the goal, but may not always
be possible due to clinical circumstances (e.g., a rapid­
ly progressing labour, or when narcotics or a pre­
scribed medication heavily alter a mother’s level of
consciousness).
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Table 3: Strategies to facilitate communication with expectant parents during a prenatal consultation (to reorder and adapt as needed)
Consultation phases
Key points
To prepare for consultation
Preparation and setting
Speak with the mother’s HCP, obtain all relevant information regarding maternal and fetal health
Ensure use of interpretive services by a professional translator, if required
Create a comfortable environment
Make sure to talk with both parents, if feasible
Make sure the consult is not disturbed (e.g., turn pager to vibrate, close the door or curtains, let the nurse know)
Sit down, shake hands (if appropriate) and introduce yourself first, slowly and clearly
Demonstrate openness to communication with and involvement of parents
Ask about participants (e.g., use names, including the infant’s name, if known, and if parents agree you can use it)
Assess parental knowledge of prematurity
issues along with perspectives, concerns,
expectations, needs and preferences
Ask what they know about prematurity
Make sure you understand and acknowledge their values, perspectives and concerns (e.g., cultural/social background,
religious beliefs, family structure)
Adjust ways of communicating information to respect their values and preferences
Support their involvement in decision making with inclusive wording (e.g., “How can I support you?”; “We can make
this decision together”)
During consultation
Ensure factors that are important to parents Typically, parents want to know about likelihood of survival, risk of NDD (with related challenges and opportunities),
are discussed (e.g., Ask what is important what medical problems might be encountered, possible treatments, what a preterm baby looks like, what it is like to be
to them)
in the NICU, what happens after birth, how to manage breastfeeding, and their own role in the NICU (with explanations)
Discuss different choices or options
Present parents with the choices they need to make, clearly and accurately
Offer appropriate management options based on the clinical situation
Share weighted or balanced information
Include both positive and negative aspects of care, pros and cons of the options, treatable and non-treatable conditions
Disclose potential outcomes according to parental preferences:
• Use grading words (majority, most, significant, some, a minority) and numbers when possible (6 out of 10, rather
than 60%)
• Use a consistent denominator when presenting different options, outcomes or event rates, to make the information
easier to understand, interpret or compare (XX out of 10, 100 or 1000). For example, saying “Out of 100 babies, 20
will die, 20 will survive with NDD, and 60 will survive with no NDD,” is better than saying 20 out of 100 for one out­
come, then 1 out of 5 for another.
Disclose uncertainty (i.e., the limits of statistics when applied to a particular baby)
Additional strategies to build trust
Allow parents to lead the conversation:
• Use their verbal, nonverbal cues to pace discussion
• Ask how you can support them
• Invite them to share how they see the situation
• Use open-ended questions (“How…?”, “Could you tell me more?”, “Can you describe…?”)
6 | COUNSELLING AND MANAGEMENT FOR ANTICIPATED EXTREMELY PRETERM BIRTH
• Always ask whether parents have questions or need clarification
Listen for concerns and emotions, and be empathetic and supportive:
• Validate the difficulty of their situation
• Use a soft voice, allow silences, use appropriate touch
• Acknowledge and be sensitive to emotional reactions and concerns
• Support parental needs and values
Answer questions and be sure parents have received and understand the information to the extent they want to
Maintain eye contact with both parents
Offer time to think and reflect
Avoid interrupting. Be quiet as parents describe perspectives, values or preferences
Note: Obtaining informed consent for a management plan requires – at a minimum – sharing accurate information tai­
lored to the parents’ needs regarding the risk of death and NDD, and the opportunity of having a surviving child with or
without NDD
Show compassion and acknowledge
parental distress
Reassure parents that they did not do anything to cause preterm birth
Confirm the uniqueness of their family and of the unborn baby
Acknowledge their baby as a being, not a GA
Provide value-neutral information (i.e., by including the positives of having an infant they can love and cherish)
Be honest
Concluding the consultation
Provide support and give parents realistic
hope
Validate their situation as very difficult and their reactions as understandable
Tell them that every hour, day and week that the pregnancy continues (with baby and mom in stable condition) has posi­
tive effects
Make sure they know that they are not alone
Make sure they understand that you are there to provide more information and answer new questions
Invite them to write their questions down as they think of them, for next time
Meet with parents the following day, if possible, or at any time after the initial consultation
* Adapted with permission from Daboval T, Ferretti E, Rohde K, Muirhead P, Moore G. Neonatal Ethics Teaching Program – Scenario-Oriented Learning in Ethics: Ante­
natal Consultation at the Limit of Viability. MedEdPORTAL Publications; 2015. Available from: https://www.mededportal.org/publication/10043
Management decisions, including ethical considerations
Depending on an infant’s prognosis, HCPs usually
present parents with one or two broad management
options during a prenatal consultation: early intensive
care (with ongoing re-evaluation) and/or palliative care.
Prognosis is based on all available information at the
time of consultation and helps determine what man­
agement options are proposed.
When the HCP determines that both early intensive
and palliative care are options, parents should be en­
gaged in SDM and their decisions regarding appropri­
ate care for their infant supported. When there is a typ­
ical approach to care, present it to parents together
with the reasons why other options may (or may not)
apply to their particular circumstances. Throughout the
process, parents should be encouraged to express
FETUS AND NEWBORN COMMITTEE, CANADIAN PAEDIATRIC SOCIETY |
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their thoughts and opinions. Listen, be sure that par­
ents understand the information provided, and seek
consent to proceed. Ideally, the decision-making
process occurs over time, with HCPs and parents able
to acknowledge, articulate and manage varying de­
grees of prognostic uncertainty.
Some difficult clinical issues have no universal an­
swers, which is why parental involvement, ethicsbased discussion and personal reflection are such im­
portant aspects of care. What factors initially determine
whether to offer parents both early intensive or pallia­
tive care options or recommend one option over anoth­
er? What outcomes are relevant to this decision? What
predicted likelihood of death justifies the non-initiation
of intensive care? What severity and/or predicted likeli­
hood of NDD could justify non-initiation of intensive
care? What predicted likelihood of survival justifies
over-ruling a family’s request for palliative care? Clear­
ly, these and other difficult questions exist in many
cases. The clinical picture, HCPs experience and
parental involvement all inform the decision-making
process, and Table 4 suggests a framework for key de­
liberations.
A lower limit where palliative care will be recommend­
ed by HCPs is typical practice, just as there is an up­
per limit where they will recommend early intensive
care. A parent may disagree with the option that is rec­
ommended. Given the lack of a moral authority regard­
ing standard of care in this complex area, a ‘non­rec­
ommended’ option is sometimes instituted after further
informed discussion, time to think and conflict resolu­
tion.[32][87] There are also cases where parents and
HCPs cannot reach consensus about an infant’s care
management. While HCPs are responsible for explor­
ing management options with parents, this obligation
does not necessarily extend to offering treatments that
are clearly outside the usual local level of care. In such
situations, consider seeking a second opinion from a
colleague and/or support from an ethics consultation,
or applying for an institutional board review to deter­
mine the infant’s and family’s best interests.
When extremely preterm infants are born outside of a
tertiary care centre, consultation via phone or video
with a neonatologist can help to focus management
options and care planning based on setting, resources
and local expertise.
Table 4: Levels of care for the extremely preterm infant, based on risks for anticipated mortality or NDD
Risk estimation for anticipated mortality or long-term Suggested level of care
NDD
Clinical examples that usually meet the risk estimation
Extremely high likelihood of mortality or severe NDD* Palliative care is recommended **
Infant born at 22 weeks GA, irrespective of additional risk factors***
Infant born at 24 weeks GA, with an estimated weight of 350 g
Moderate-to-high likelihood of mortality or moderate- Intensive care or palliative care are
to-severe NDD
both usual care options
Infant born at 23 to 24 weeks GA, irrespective of most additional risk
factors***
Infant born at 25 weeks GA, with signs of fetal anemia and abnormal
placental blood flow
Low likelihood of mortality or moderate-to-severe
NDD
Intensive care is recommended **
Infant born at 25 weeks GA, without additional risk factors***
Infant born late in 24th week of gestation (e.g., 245), well grown with
ANCS given, born in a tertiary care centre
* In the clear majority of cases, the risk estimation for neurodevelopmental disability (NDD) does not reach the ‘extremely high likelihood’ category. Most cases where
palliative care is recommended usually relate to an ‘extremely high likelihood’ of mortality, even when providing intensive care.
** Given the lack of moral authority on the suggested level of care, parents may choose a non-recommended option. HCPs should engage with them to determine
their infant’s management plan.
***Additional risk factors include: small for gestational age (GA), absence of antenatal corticosteroids (ANCS), multiple gestation, GA early within week of gestation,
birth outside of a tertiary centre, acute chorioamnionitis, and major congenital anomalies present on ultrasound.
When the care plan is uncertain or when the plan is to
provide early intensive care, a neonatal team capable
of caring for the infant and facilitating management de­
cisions should be present at the birth. After the birth of
8 | COUNSELLING AND MANAGEMENT FOR ANTICIPATED EXTREMELY PRETERM BIRTH
an extremely preterm infant, there are often several
opportunities to learn more about the infant’s progno­
sis and to re-evaluate care plans. The provision of pal­
liative care (chosen before or after birth) mandates the
presence of HCPs who can oversee individualized
comfort measures, including keeping the infant warm
and minimizing discomfort and pain. Give parents op­
portunities to hold and spend as much time with their
infant as desired. Also, be sure they are aware of the
possibility that their infant may survive despite non-ini­
tiation or discontinuation of life-sustaining therapies, al­
though such cases are extremely rare. Comfort mea­
sures are essential for any dying infant, and bereave­
ment care and options to create memories (e.g., foot­
prints, handprints, photographs) should always be pro­
vided for parents in such situations.
Recommendations
The quality of evidence reviewed for this statement is
nearly all low or very low, such that almost all recom­
mendations stem from expert opinion and consensus.
[88] With the exception of research on ANCS, the litera­
ture provides relatively indirect evidence to support
recommendations. Recommendations have not been
graded for evidence. Difficult, preference-sensitive and
value-based decisions are often made in this area of
care.
• When a pregnant woman is at risk of giving birth
between 220 and 256 weeks GA, the primary HCP
should consult with a maternal-fetal medicine spe­
cialist. Transfer to a tertiary perinatal centre is rec­
ommended.
• Parents facing the birth of an extremely preterm in­
fant should have the opportunity for face-to-face
discussions with their obstetrical HCP as well as a
consultation with a neonatologist or paediatrician.
When circumstances permit, parents should be
able to meet with these HCP on more than one oc­
casion.
• Parents must receive individualized, accurate infor­
mation about their infant’s anticipated likelihood of
survival and potential long-term outcomes. For
each case, the HCP must explain the degree of
prognostic uncertainty and the limits of data.
• When both early intensive care and palliative care
are considered to be equal care options, the man­
agement plan should be decided upon after engag­
ing in a SDM process with parents. The SDM
process should be ongoing as the pregnancy con­
tinues.
• HCP should consider using a decision aid, decision
coaching and parent information handouts to facili­
tate parental involvement and
throughout the SDM process.
understanding
• The maternal-fetal medicine specialist, neonatolo­
gist, nurse caring for the mother and other HCP in­
volved in the circle of care, must communicate di­
rectly with each other and with parents to ensure
clear understanding of the management plan, avoid
conflicting information and enhance care. Ideally,
such conversations should take place at the bed­
side to allow all pertinent information to inform the
decision-making process. The plan must be clearly
documented and revised if the plan changes.
• ANCS should be given between 220 and 256 weeks
GA when early intensive care is a management op­
tion and, in the opinion of the obstetrical HCP, the
risk of extremely preterm birth is high.
• The HCP and team most capable of managing an
extremely preterm infant should attend delivery, re­
gardless of the management plan chosen.
• When prenatal maternal transfer is not possible,
the HCPs at the referring centre should initiate a
consultation with a neonatologist (by phone or via
telemedicine) to review management options and
receive guidance about the decision-making
process with the parents. Early intensive care or
palliative care should be offered, based on estima­
tion of prognosis and the resources available. The
management plan should be finalized after discus­
sion between HCP at the referring centre and par­
ents.
• When an extremely preterm infant is born but no
decision has been reached regarding the manage­
ment plan (e.g., circumstances prevented SDM an­
tenatally or parents could not yet decide), the infant
should usually receive early intensive care until
SDM or further discussion with the parents can oc­
cur. This recommendation does not apply for in­
fants considered extremely likely to die or to experi­
ence severe NDD, or when the setting, resources
(including personnel) or local expertise do not allow
for the adequate provision of early intensive care.
• All extremely preterm infants who do not receive
early intensive care, or for whom early intensive
care is not successful, must receive compassionate
palliative care, including warmth and pain relief.
Acknowledgements
Special thanks to the Ottawa Shared Decision Making
for Extremely Premature Infants working group mem­
FETUS AND NEWBORN COMMITTEE, CANADIAN PAEDIATRIC SOCIETY |
9
bers for their conceptual input, with specific acknowl­
edgement of Dr. Thierry Daboval, Sandra Dunn PhD,
and Michael Kekewich MA for their additional written
contributions. We would also like to acknowledge the
paediatricians practicing in rural and remote areas,
neonatologists and HCPs from 11 Canadian NICUs,
Canadian Premature Babies Foundation and parents,
Canadian Paediatric Society’s Bioethics and Commu­
nity Paediatrics Committees, College of Family Physi­
cians of Canada and Society of Obstetricians and Gy­
necologists of Canada for their review and input during
the national consultation process for this statement.
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Appendix
Definitions
Gestational age
This statement uses the definition of GA from the
WHO’s International Classification of Diseases, 10th
revision, as days and weeks completed since the first
day of the last menstrual period. Thus, “22 weeks”
refers to the period between 22 weeks 0 days (220)
and 22 weeks 6 days (226). An extremely preterm birth
refers to one occurring between 22 weeks 0 days (220)
and 25 weeks 6 days (256).
Usually, early intensive care aims at achieving infant
survival, though it can also offer time (a ‘trial’ of inten­
sive care) to assess, in consultation with parents, the
most appropriate course for surviving infants. Early in­
tensive care may be synonymous with resuscitation
and involve life-sustaining interventions, such as posi­
tive pressure ventilation (including continuous positive
airway pressure), intubation and ventilation, chest
compressions, or administering intravenous fluids and
epinephrine.
Palliative or comfort care
Palliative or comfort care aims at achieving comfort but
not curing. This form of care includes drying, swad­
dling, cuddling and skin-to-skin contact with the infant,
and may include giving oral sucrose, medications to
sedate or manage pain, oral fluids or milk. Extremely
preterm infants receiving comfort care will die within
minutes to days of birth.
1. Marlow N, Wolke D, Bracewell MA, Samara M;
EPICure Study Group. Neurologic and developmental
disability at six years of age after extremely preterm
birth. N Engl J Med 2005;352(1):9-19.
Neurodevelopmental disability
This statement uses definitions of NDD that are con­
sistent with those used in the landmark EPICure cohort
report. Though definitely not all-encompassing, they
represent the main disabilities perceived by HCPs and
parents as creating lifelong, potentially difficult chal­
lenges for children and families.(1-3) Severe NDD
renders a child highly dependent on caregivers and in­
cludes one or more of the following conditions: severe
cerebral palsy (unable to walk or able to walk short dis­
tances with a walker); severe cognitive deficit (>3 stan­
dard deviations below the mean on a standardized in­
telligence test, leading to major challenges with learn­
ing, communication or interpersonal relationships);
blindness or severely impaired vision; or profound
hearing loss that cannot be corrected. Moderate NDD
implies that a child is likely able to achieve some mea­
sure of independence, and includes one or more of
the following conditions: moderate cerebral palsy (diffi­
culty with walking or another part of movement); mod­
erate cognitive impairment (2 to 3 standard deviations
below the mean on a standardized intelligence test,
leading to some challenges with learning, communica­
tion or interpersonal relationships); impaired vision
without blindness; or correctable hearing loss. Moder­
ate-to-severe NDD includes one or more of the dis­
abilities described above.
2. Drotar D, Hack M, Taylor G, Schluchter M, Andreias
L, Klein N. The impact of extremely low birth weight on
the families of school-aged children. Pediatrics
2006;117(6):2006-13.
3. Stephens BE, Bann CM, Poole WK, Vohr BR. Neu­
rodevelopmental impairment: Predictors of its impact
on the families of extremely low birth weight infants at
18 months. Infant Ment Health J 2008;29(6):570-87.
CPS FETUS AND NEWBORN COMMITTEE
Members: Leonora Hendson MD, Ann Jefferies MD
(past Chair), Thierry Lacaze-Masmonteil MD (Chair),
Brigitte Lemyre MD, Michael Narvey MD, Leigh Anne
Newhook MD (Board Representative), Vibhuti Shah
MD
Liaisons: Linda Boisvert RN, Canadian Association of
Neonatal Nurses; Radha Chari MD, The Society of Obstetricians and Gynaecologists of Canada; William
Ehman MD, College of Family Physicians of Canada;
Roxanne Laforge RN, Canadian Perinatal Programs
Coalition; Juan Andrés León MD, Public Health
Agency of Canada; Eugene H Ng MD, CPS NeonatalPerinatal Medicine Section; Marianna Ofner, Public
Health Agency of Canada; Kristi Watterberg MD, Committee on Fetus and Newborn, American Academy of
Pediatrics
Early intensive care
FETUS AND NEWBORN COMMITTEE, CANADIAN PAEDIATRIC SOCIETY |
13
Principal authors: Brigitte Lemyre MD, Gregory
Moore MD
Also available at www.cps.ca/en
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14permission
| COUNSELLING
AND MANAGEMENT
FOR ANTICIPATED
PRETERM
BIRTH
Disclaimer: The recommendations in this position statement do not indicate an
exclusive course of treatment or procedure to be followed. Variations, taking in­
to account individual circumstances, may be appropriate. Internet addresses
are current at time of publication.