PERINATAL PALLIATIVE CARE

Dr Ross DrakePaediatric Palliative Care Specialist

Starship Children’s Hospital

DefinitionPalliative 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

Prenatal (n = 8) Postnatal (n = 11)

6 male, 2 female ethnicity

5 NZ Euro, 1 Maori, 2 Pacific diagnosis

4 neurology (brain reduction syndromes)

3 cardiac 1 renal

survival (75% died) 4 < 1 day 2 at 1 wk to < 1 mo

2 alive (9 & 11 mo – cardiac)

6 male, 5 female ethnicity

6 NZ Euro, 2 Maori, 3 Pacific diagnosis

6 genetic (2 x metabolic, EB, chromosomal)

3 neurology 2 cardiac

survival (64% died) 1 < 1 mo 5 at 1 mo to < 1 yr 1 > 1 yr

4 alive (8, 13, 21, 22 mo)

Prenatal conditions1. ante- or postnatal diagnosis not compatible with long term

survival i.e. bilateral renal agenesis, anencephaly

2. ante- or postnatal diagnosis with high risk of significant morbidity or death

i.e. severe bilateral hydronephrosis & impaired renal function

Decision-making3. certainty of diagnosis4. certainty of prognosis5. meaning of the prognosis to the parents

Suggestion clear cut antenatal diagnosis

discuss both palliative & termination options with parents

unclear antenatal diagnosis with prognostic uncertaintypalliative care remains an option as it does

not preclude intervention/resuscitationall in the planning

Parental decisions

studied after prenatal diagnosis of lethal fetal abnormality in 20 pregnancies40% of parents chose to continue & pursue

perinatal palliative care6 babies (75%) live born & lived between 1½ h

& 3 wk

Breeze et al. Arch Dis Child Fetal Neonatal Ed 2007; 92

Postnatal conditions1. babies born at margins of viability & ICU inappropriate2. postnatal conditions with high risk of severe impairment of quality of

life & baby receiving or requiring life support i.e. severe hypoxic ischemic encephalopathy

3. postnatal conditions where baby experiencing “unbearable suffering” i.e. severe necrotizing enterocolitis where palliative care is in baby’s best

interests

Decision-making4. requires accurate diagnosis & prognosis

prognosis not always certain5. often needs agreement within neonatal team

different perspectives on “quality of life” & “unbearable suffering”6. good communication with family

consistent senior person

NICU studies

Pierucci et al. Pediatrics 2001;108 Steven et al. J Pall Med 2001;4

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

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

www.act.org.uk/carepathways

Stages of palliative care planning

British Association of Perinatal Medicine 2010

General careA. 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 professionalsdirect support of family

Pre birth care routine antenatal care alert system intrapartum care plan delivery & Caesarean section

place of deliverystaff at deliveryresuscitation 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 caresymptom management i.e. pain, distress,

agitationnutrition & feedinginvestigations, monitoring & treatmentresuscitation 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