<Insert cover image here> Perinatal Palliative Care-

Too Early, Too Late?

Dr Tewani Komal
Consultant (Palliative Medicine)
KKH, Singapore

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 Scope

• Introduction
• Perinatal Palliative service
• Cases
• Q&A

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 Introduction

• Perinatal Palliative Care refers to

comprehensive and holistic care for expectant
parents who receive a diagnosis of life-limiting
fetal condition (LLFC) and opt to continue the
pregnancy.
• The diagnosis of life-limiting fetal condition,
understandably, transforms the pregnancy from
one of joy and expectation to one of
apprehension and grief.

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 Introduction

• The goal is to provide comprehensive medical

care and emotional support to families who
learn, as a result of prenatal testing that their
babies will likely die shortly after birth.
• www.perinatalhospice.org describes it as an
approach that ‘walks with these families on their
journey through pregnancy, birth and death,
honoring the baby as well as the baby’s family.

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 Benefits of Perinatal Palliative Care

• The parents who choose this model of care gave

positive feedback.
• Besides the quality of clinical care given to the
baby, the fact that they did not have to cope with
the consequences and guilt of voluntarily
terminating the pregnancy, made a difference to
them
• Chitty LS et al Continuing with pregnancy after a diagnosis of lethal abnormality:experience of five
couples and recommendations for management. BMJ 1996 313 478-480
• Women should be offered post abortion psychological care. Lancet 2008 371:602

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 Benefits of Perinatal Palliative Care

• Parents and relatives were able to cope better

with bereavement because they were a bit more
prepared and supported.
• Parents and relatives were able to accompany
the baby to his/her natural end
• They felt well informed and clear about
appropriate treatments and trajectory.
• Breeze AC, Murdoch EM: Palliative care for prenatally diagnosed lethal fetal abnormalities. Arch
Dis Child Fetal Neonatal Ed 2007 92 F56-F58

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 KK Women’s and Children’s hospital

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 KKH Statistics

• Total deliveries 11,000-13000 in a year.

In 2016- 11,857
• Total number of patients discussed at High Risk
clinic around 300 (2016-217)
• Total number of patients discussed in Birth Defect
Clinic around 1200 (2016- 1109)
• Women diagnosed antenatally with a lethal fetal
condition ?
• NICU beds 40
• SCN beds 60

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 Time frame for various Screenings

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 Summary and recommendations

• It is desirable for obstetric and neonatal units to

have available an active and efficient PPC
program.
• Early initiation starting from the time of antenatal
diagnosis is important.
• ‘Inclusive’ and flexible care is needed as the
maternal-fetal dyad may need care from various
disciplines appropriate to the fetal diagnosis.

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 Scope

• Introduction
• Perinatal Palliative service in KKH
• Case Discussions
• Q&A

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 Perinatal Palliative Care in KKH

• Online survey of perception of neonatologist on Palliative care

and End of life care issues done in KKH
• Neonatologist’s perspective on palliative care services and end of life issues
Tong WY, Tewani K

• Presentation to the neonatology department on findings of

survey
• Neonatal Palliative Symposium- network with Alex Mancini
and Brian Carter(28/8/2016)
Guidance on supportive and comfort care in vulnerable babies 2017
• Meet up with Sister Rahimah/MSW Majella from bereavement
service.
• Meet up with High Risk Obstetricians regarding number of
patients diagnosed with lethal fetal conditions
• Meet up with Neonatologist regarding workflow
• Meet up with MSW

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 Perinatal Palliative Care in KKH

• Started in Jan 2017

• Under the Division of O&G
• Clinical Lead
• Collaboration with various disciplines
• Champions nominated or staff who was
interested and forthcoming
• Training (www.icpcn.com e-learning program on
Perinatal Palliative Care)

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 Workflow

HRC BDC Neonatologist High Risk Obstetricians

Perinatal Palliative Care Service

First Consult ( P/N/M)

Second consult (P/C)

Birth

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 List of conditions

• TRISOMY 13, 18
• ANENCEPHALY, HYDRANENCEPHALY, ACRANIA,
ACALVARIA, EXENCEPHALY
• HOLOPROSENCEPHALY, HUGE ENCEPHALOCOELE
• BILATERAL MULTICYSTIC DYSPLASTIC KIDNEYS
• LETHAL SKELETAL DYSPLASIA
• MYELOMENINGOCELE (SEVERE)
• INOPERABLE CARDIAC LESIONS
• CONGENITAL TUMORS - e.g. YOLK SAC TUMORS ,
OROPHARYNGEAL TUMORS
• PENTALOGY OF CANTRELL/
• SEVERE ECTOPIA CORDIS
• SEVERE FORMS OF AMNIOTIC BAND SYNDROME

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 Bereavement Service

• Initiated by Sister Rahimah and team

• Service comes under Chairman Medical Board
• Quiet/ Palliative room
• Memory box (Photograph, hand and foot print,
lock of hair)
• Follow up calls
• Condolence cards

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 Quiet/Palliative Room

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 Bereavement Resources in Neonatal Department

Angel gowns
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 Angel Gowns

We have been receiving clothes

from them since Oct 2016
Work closely with them for PeriPal
service too

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 Angel Gowns (www.angelhearts.sg)

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 Angel Gowns

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 High Risk Nurses Medical Neonatologist Genetics
Obstetrician Social
Worker

Respiratory
Cardiologist
Physician

Neurologist
Speech Therapist

Music Physiotherapist Bereavement Respiratory

Therapy Occupational Service Therapist
Therapist

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 Lessons learned along the way

• Single room irrespective of class of patient

• Symbol outside room ( small red heart sticker) to
let care assistants know that baby has passed
away.
• Less people in delivery room, no students.
• Post LSCS, baby nursed with mother.
• No birth certificate on a weekend.

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 Scope

• Introduction
• Perinatal Palliative service in KKH
• Cases
• Q&A

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 Case Discussions- Baby Darius
• Mother 33 years old G4P1
• First baby Gabriel, born at
34 +2 weeks. Fetal anomaly
scan showed multiple
congenital anomalies
• Intubated at birth, ventilator
dependent. Diagnosed with
Walker Warburg syndrome.
• He remained intubated for
nearly 3 months and
passed away in NICU
without the parents once
carrying him.

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 Case Discussions- Baby Darius

• Baby Darius was also diagnosed with multiple

congenital anomalies at FA scan, born at 34+2
weeks with a birth weight of 2.130kg.
• Born Dusky with poor respiratory effort.
• Attempted intubation at 7 min of life
• Very difficult intubation
• Successfully intubated at 24 min by Anesthetist.
• Was ventilated and managed in NICU

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 Case Discussions- Darius

• This time round family was referred to perinatal

palliative care.
• Decision made early on, that if accidental
extubation, not for reintubation.
• Multiple discussions and sessions with teams
• Memory making, parents able to hold the baby,
Single room with possibility of visits from extended
family
• Gradually reached a point where withdrawal was
done.
• TD was offered but parents felt more supported
here.

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 Interesting Conclusion

• Multicenter collaboration.
• Whole exome sequencing done for both Gabriel
Darius and both parents.
• Gabriel and Darius had compounded
heterozygous variant of KIAA1109 gene (one
maternally inherited variant and one paternally)
• Publication in American Journal of Human
Genetics ‘ KIAA1109 variants are associated
with a severe disorder of brain development and
Arthrogryposis ( new Syn Alkuraya-Kucinkas)

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 Case Discussion -WE

• Young couple, describe each other as best

friends, met and fell in love in Malaysia.
• News of first pregnancy filled them and their
families with joy.
• Baby diagnosed to have Holoprosencephaly.
• Parents decided not for Medical termination of
pregnancy and were referred to Perinatal
Palliative care.
• First consult- understanding the parents view.

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 Case Discussion -WE

• Birth plan- They hoped for a normal delivery but

in view of the large head size, were aware that
C-section may be the route of delivery
• ACP for WE- They wanted to meet their
daughter, hold her, make memories, introduce
her to extended family. They had got some
clothes and basic baby stuff ready. They did not
want anything unnatural or invasive to prolong
the baby’s life.
• Parallel planning- If baby passes away, if she
gives us time

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 Case Discussion-NR

• 31 year old Malay lady. Initially follow up at TMC but

antenatally US showed ventriculomegaly hence
referred to KKH
• Discussed at BDC.
• Unfortunately due to premature rupture of
membranes had to deliver the baby by Emergency
LSCS on 23/8/2017
• Born Flat and apneic. Intubated at birth.
• MRI Brain on 24/8/17 showed large posterior fossa
tumor (7.5 cm) involving midbrain and brainstem

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 Case Discussion-NR

• Unfortunately as delivery by Emergency LSCS,

unable to meet and discuss with parents antenatally.
• Seen by Neurosurgery and deemed inoperable.
• Seen by Medical Onco- Not for chemo.
• Discussed with parents.
• Initial discussion
• Reservoir for aspiration of CSF inserted
• Second and Third discussion
• Decision- Withdrawal on 24/9/2017

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https://www.facebook.com/2187000161518168/
posts/2250392468512270?sfns=mo

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 Future Directions

• Clinical-
Quarterly team meetings to discuss outcome of
cases managed
• Education-
Palliative workshops and GDPM for interested
team members
• Research-
Qualitative study involving parents of babies under
Perinatal Palliative Care

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 Professional Photography

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 Thank You from the PeriPal Team

• komal.tewani@singhealth.com.sg

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 Resources

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 Mark your Calendar!
8 – 11 July 2020
See you in Singapore!
For more information :
www.singaporepalliativecare.com

Breathlessness Management Masterclass

Complex Palliative Care Needs in the Community
Dignity Symposium
Serious Illness Conversations Masterclass
The Role of Music Therapy in Palliative Care

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 Thank You

• Questions?

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