Transcript PPC and the Neonate - Health Quality & Safety Commission

Dr Ross Drake
Paediatric Palliative Care Specialist
Starship Children’s Hospital
Definition
Palliative care is an active & total approach to
care, embracing physical, emotional, social &
spiritual elements.
It focuses on enhancement of quality of life for
the infant/child & support for the whole family
& includes the management of distressing
symptoms, provision of respite & care from
diagnosis through death & bereavement.
The Association for Children's Palliative Care &
the Royal College of Paediatrics & Child Health 1993
Starship data – 2 yrs


6 male, 2 female
ethnicity
6 male, 5 female
 ethnicity

 6 NZ Euro, 2 Maori, 3 Pacific
 5 NZ Euro, 1 Maori, 2 Pacific

diagnosis

 6 genetic (2 x metabolic, EB,
 4 neurology (brain reduction
syndromes)
 3 cardiac
 1 renal

chromosomal)
 3 neurology
 2 cardiac

survival (75% died)
2 alive (9 & 11 mo – cardiac)
Prenatal (n = 8)
survival (64% died)
 1 < 1 mo
 5 at 1 mo to < 1 yr
 1 > 1 yr
 4 < 1 day
 2 at 1 wk to < 1 mo

diagnosis

4 alive (8, 13, 21, 22 mo)
Postnatal (n = 11)
Prenatal conditions
ante- or postnatal diagnosis not compatible with long term
survival
1.

i.e. bilateral renal agenesis, anencephaly
ante- or postnatal diagnosis with high risk of significant
morbidity or death
2.

i.e. severe bilateral hydronephrosis & impaired renal function
Decision-making
1.
certainty of diagnosis
2.
certainty of prognosis
3.
meaning of the prognosis to the parents
Suggestion

clear cut antenatal diagnosis
 discuss both palliative & termination options
with parents

unclear antenatal diagnosis with
prognostic uncertainty
 palliative care remains an option as it does
not preclude intervention/resuscitation
 all in the planning
Parental decisions

studied after prenatal diagnosis of lethal
fetal abnormality in 20 pregnancies
 40% of parents chose to continue & pursue
perinatal palliative care
 6 babies (75%) live born & lived between 1½ h
& 3 wk
Breeze et al. Arch Dis Child Fetal Neonatal Ed 2007; 92
Postnatal conditions
babies born at margins of viability & ICU inappropriate
postnatal conditions with high risk of severe impairment of
quality of life & baby receiving or requiring life support
1.
2.

i.e. severe hypoxic ischemic encephalopathy
postnatal conditions where baby experiencing “unbearable
suffering”
3.

i.e. severe necrotizing enterocolitis where palliative care is in baby’s
best interests
Decision-making
1.
requires accurate diagnosis & prognosis

prognosis not always certain
often needs agreement within neonatal team
2.

different perspectives on “quality of life” & “unbearable suffering”
good communication with family
3.

consistent senior person
NICU studies

196 deaths over 4 yr



25 (13%) palliative care
consultations

 rate increased from 5% to 38%


infants receiving PC had
fewer days in ICU &
interventions incl. CPR
families referred more
frequently for chaplain &
social services
Pierucci et al. Pediatrics 2001;108
51 deaths (898 admissions)
12 (24%) palliative care
consultations
reason for consults





organize home/hospice care
facilitation of medical options
facilitation of comfort measures
grief/loss issues
recommendations
 advance directive planning
 optimal environment for
supporting neonatal death
 comfort & medical care
 psychosocial support
Steven et al. J Pall Med 2001;4
www.act.org.uk/carepathways
Stages of palliative care planning
British Association of Perinatal Medicine 2010
General care
A. Family care




psychological
support
creating memories
spiritual or personal
beliefs
financial & social
support
B. Communication &
Documentation
C. Flexible parallel
care planning
General planning

A to C
 multi-disciplinary discussion amongst obstetric &
neonatal team
 good communication with local team incl. GP
esp. if delivery elsewhere
 named co-ordinator of care

PPC team can provide 3 levels of support
 not required
 support for health professionals
 direct support of family
Pre birth care
routine antenatal care
 alert system
 intrapartum care plan
 delivery & Caesarean section

 place of delivery
 staff at delivery
 resuscitation at delivery
Decision-making

in delivery room
 information available
 uncertainty of prognosis

after live birth
 infants condition evolves (flexible care plan)
 family values
 meaning of outcome for the child within the family

after a trial of treatment
 maybe offered in cases of poor but uncertain prognosis
 dynamic process
 reassess frequently
Postnatal care plan

transition from active to palliative care
 can be gradual to evaluate babies progress

supportive care
 physical comfort care
 symptom management i.e. pain, distress,
agitation
 nutrition & feeding
 investigations, monitoring & treatment
 resuscitation plans
End of life care plan
place of care
 staff leading end of life care
 transition to end of life care
 physical changes in appearance
 post mortem (if required)
 organ donation

Post death care
confirmation of death & certification
 registration

 requirements of live born & still born
taking baby home after death in hospital
 funeral arrangements

communication & follow-up
 staff support

Summary
involved in prenatal & early in postnatal
 work along side obstetric &/or NICU
team
 advice &/or support for different aspects
of management
 assist with transfer home
 support primary care & community
services
 after care
