Holding a candle in the dark:
Obstetric care when facing a poor perinatal prognosis
Catholic Health Australia National Conference
Sue Walker
Sheila Handbury Chair, Maternal Fetal Medicine
Mercy Hospital for Women
University of Melbourne
Perinatal Palliative Care:
an obstetric perspective
Fetuses with prenatally diagnosed life limiting abnormalities
Babies born at limits of viability, spontaneous and induced
Neonates that do not respond to aggressive resuscitation/
medical management
Perinatal Palliative Care:
an obstetric perspective
Fetuses with prenatally diagnosed lethal abnormalities
Prenatal Diagnosis
Prenatal ultrasound has revolutionised obstetric care
•Accurate dating, diagnosis multiple pregnancies, placental localisation
•Normal findings improve positive feeling about pregnancy and promote bonding
•Prenatal diagnosis of genetic structural abnormalities, including those that may be
amenable to fetal therapy
Prenatal Diagnosis
Prenatal ultrasound has revolutionised obstetric care
•Accurate dating, diagnosis multiple pregnancies, placental localisation
•Normal findings improve positive feeling about pregnancy and promote bonding
•Prenatal diagnosis of genetic structural abnormalities, including those that may be
amenable to fetal therapy
Prenatal Diagnosis
Prenatal ultrasound has revolutionised obstetric care
•Accurate dating, diagnosis multiple pregnancies, placental localisation
•Normal findings improve positive feeling about pregnancy and promote bonding
•Prenatal diagnosis of structural abnormalities, including those that may be
amenable to fetal therapy
Prenatal Diagnosis
Prenatal ultrasound has revolutionised obstetric care
Abnormal findings generate stress and anxiety
Families require timely, clear, accurate and unbiased information from multidisciplinary
team about diagnosis and prognosis
Nature of abnormality, likely aetiology
Further testing/ imaging that may be required
Impact on pregnancy, delivery
Outlook for baby, newborn and beyond;
recurrence risk
The patient experience…..
Bereavement for the loss of healthy baby
Bereavement for the loss of a normal
pregnancy
Bereavement for the loss of the future planned
with their perfect baby
‘I was healthy and not expecting any
abnormal results. It was such a shock to be
told my baby had no chance of survival’
Content and amount of information often
overwhelming; care may be fragmented
Decision making about the future for the
pregnancy
Feelings of isolation; disconnected from family
and friends
‘We felt so anxious waiting for the test
results- there was this fear of the unknown.
Then we felt useless, knowing that nothing
that anyone could say will alter the outcome’
Life limiting fetal abnormalities;
integrating palliative care into obstetrics
Antenatal
Agreed plan by MD team regarding diagnosis, prognosis, management
Individualised antenatal care
•
place, provider, priorities, birthing classes
•
family centred; addressing social, psychological, spiritual needs
Momentos
•
ultrasound pictures, photographing belly, writing journal
Multiple pregnancy
•
individualised plan for each baby
Preparing…
•
birth/ death; announcement/ funeral, handling friends, family & strangers
Life limiting fetal abnormalities;
integrating palliative care into obstetrics
Intrapartum care planning
Place of delivery: if at another hospital, clear communication regarding
diagnosis, prognosis and palliative care plan and someone able to enact it
Monitoring in labour; action to be taken in the event of fetal distress
Indications for caesarean section (? maternal reasons alone or to increase the
chance of the baby being born alive, and spending some time with family)
Paediatric attendance at delivery; resuscitation plans/ limits
Momentos to be taken at delivery; Tests to be performed at delivery
Life limiting fetal abnormalities;
integrating palliative care into obstetrics
Preparing for post death care
Care of the baby leading up to death
Changes in appearances
?organ/ tissue donation
Registration, death certificate
Funeral
Future pregnancy planning
When the path is not straight…
‘There are known knowns. These are things we know that
we know. There are known unknowns. That is to say,
there are things that we know we don't know. But there
are also unknown unknowns. There are things we don't
know we don't know.’
•Donald Rumsfeld, US Secretary of Defence
‘Unknowns’ even with a certain diagnosis…
Will my baby die during pregnancy?
How will I know if my baby dies? When did it happen?
Am I going to deliver early? Can I choose to ‘say good bye early’?
Is my baby suffering now, or will my baby suffer in labour?
Is choosing palliation for one twin putting the other at greater risk?
How long will my baby live? Should I suppress lactation?
‘Unknowns’ with an uncertain diagnosis..
There are many serious abnormalities where the outlook is uncertain at the
time of diagnosis, and it is unclear whether the lesion will be ‘palliate-able’
Kidney abnormalities
Bone dysplasias
Brain abnormalities
Heart abnormalities
Families are going forward with very uncertain information
May be dealing with parallel ‘active treatment’ and
‘palliative treatment’ postnatal care plans for the pregnancy
Perinatal Palliative Care:
an obstetric perspective
Fetuses with prenatally diagnosed lethal abnormalities
Babies born at limits of viability, spontaneous and induced
Image from Heartfelt
Obstetric challenges with previable palliation…
Spontaneous preterm birth
• Often unpredictable, sudden, distressing event
• obstetric focus is on suppressing labour/ finding cause/ controlling pain
• little opportunity to consider ‘achieving a good death’
Induced preterm birth in the setting of serious maternal illness:
• Obstetric focus is centred on maintaining maternal life and health
• often too unwell to fully participate in palliative care for baby born alive
Delivery in the interests of maternal life and health….
33 y.o. G2P1 transferred on Easter Thursday at 21W3D with severe primary pulmonary HT
Other Medical History: BMI 51; obstructive sleep apnoea; previous Caesarean Section
Extensive consultation: no reversible component; no treatment likely to achieve remission;
inexorable progression.
Unlikely to survive pregnancy; decompensation with advancing gestation inevitable; need
for delivery to maximise chance of maternal survival
The team: Anaesthetics/ ICU/ cardiology/ obstetrics/ midwifery
The plan: slow induction of labour and delivery in ICU
The delivery: Proceeded to labour and delivery of baby, Nathaniel in ICU
The long term: extremely poor long term outlook; not a candidate for transplant; remains
on maximal medical treatment for pulmonary HT; OSA being treated
Perinatal Palliative Care:
an obstetric perspective
Fetuses with prenatally diagnosed lethal abnormalities
Babies born at limits of viability, spontaneous and induced
Neonates that do not respond to aggressive resuscitation/
medical management
Failure to respond to resuscitation…
Known fetal abnormality:
• In fetuses found to be more seriously affected than first thought
Undiagnosed fetal abnormality:
• Not all diagnoses can be made in the antenatal period
No fetal abnormality:
• Acute event from which the baby is unable to be resuscitated
• Circumstances often catastrophic; not recognised in advance as a
palliative care situation
• Patient distress; Obstetrician and midwife distress
Conclusions…
Perinatal Palliative care needs increased awareness, advocacy, and deserves a place in
obstetric and midwifery curricula, and in every maternity hospital’s consciousness
Perinatal Palliative care needs to be explicitly considered in circumstances of
•
prenatal diagnosis of potential life limiting abnormality
•
previable loss; induced and spontaneous
•
infants who fail to respond to resuscitation
The obstetrician/ midwife has an important role: Often the trusted and first
point of contact ; assembles the mutlidisciplinary team; manages priorities:
•
Establishing diagnosis and prognosis
•
Developing a flexible, responsive, family centred antenatal care plan
•
Maintaining communication and ensuring documentation
•
Developing an intrapartum care plan, weighing the priorities in this
pregnancy against risks to future pregnancies and reproductive health
Thank you
Our framework……
In some cases a woman may
develop a life- or health-threatening
condition for which the only
effective and available treatment is
one that would endanger the life or
health of her unborn child. Such
treatment is permissible provided
the risks to the woman’s life or
health posed by her condition are
at least comparable to the risks the
treatment would pose for the life
or health of her child, and
provided any harm to the unborn
child is neither the intended goal
nor a means to the treatment goal.
Code of Ethical Standards for
Catholic Health and Aged Care
Services in Australia
The dummed down version….
Maternal life is at risk
Maternal health is at risk
The impact on the unborn child (previable: loss of life, or
postviability: the consequences-both death and disability- of
prematurity) is proportionate to the severity of risk to
mothers life or health
The primary purpose is not to terminate the life of
the fetus, but to provide best treatment to protect
the mother, the consequence of which may be loss
of the fetal life
WWCS?
ZG
Maternal life/ health at risk: severe cardiac condition at
high risk maternal mortality with deterioration inevitable
with increasing cardiac demands of pregnancy; need to
expedite delivery while relatively stable given considerable
risks faced at delivery and post partum

The impact on the unborn child (previable: loss of life) is
proportionate to the severity of risk to mothers life/ health

The primary purpose was not to terminate the life of the
fetus, but to provide best treatment to protect the mother

WWCS?

Delivering previable in the interests of the
mother…is it OK?
Maternal life/ health at risk:
• Condition with high likelihood of progression to serious
complications, potentially lethal (pulmonary HT, midtrimester
chorioamnionitis, midtrimester HELLP)

The impact on the unborn child (previable: loss of life; post viability:
legacy of prematurity) is proportionate to the severity of risk to
mothers life/ health
• Indicated by current condition, or
• Need for timely delivery in the ‘well window’, prior to further
deterioration (evolving sepsis, HELLP on DXM)

The primary purpose is not to terminate the life of the fetus, but to
provide best treatment to protect the mother
WWCS?


Delivering previable in the interests of the
mother…
It’s not just OK
It’s 100% the right thing to do
•clinically
•legally
•ethically
No staff member should feel like they are being subversive
or operating in a ‘moral gray zone’ when they care form
women in these unbearably difficult clinical situations
If in doubt, always seek a senior second opinion