Outline. Case 1. Progress 4/23/2013. From hospital to hospice or home How the neonatal team can enable palliative care
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1 Outline From hospital to hospice or home How the neonatal team can enable palliative care Dr Sharon English Lead Clinician Neonatal Services Leeds Teaching Hospitals NHS Trust Case stories Background Practicalities Challenges Questions Case 1 Progress Extremely good Born at 24/40 gestation BW 690g SVD First baby Minimal RDS, extubated day 2 Cranial ultrasound normal Week 4 developed NEC, e.coli sepsis Very sick, HFOV, perforation Managed conservatively Week 8 Not tolerating feeds Laparotomy, inflammatory mass removed, multiple strictures, 5 X end to end anastomoses Short gut Age 12 weeks (1 month post op) Stable in low flow oxygen TPN dependent Recurrent sepsis Cranial ultrasound shows extensive bilateral cystic PVL MRI shows little normal parenchyma 1
2 Outcome Discussion with parents Severe cerebral palsy + TPN dependence Decision for gradual withdrawal of life-sustaining treatments TPN, oxygen and medications discontinued Discharged to local hospice Died 13 days later in hospice Case 2 Born at 37/40 by EmLSCS for undiagnosed breech First baby Normal pregnancy Good Apgars but described as floppy from birth Progress Unprovoked cyanotic episodes first few hours Admitted to NNU Hypotonic Plagiocephaly Micrognathia Mild proximal limb shortening Dislocated hips Irregular breathing pattern Desaturated on handling CUSS Absent corpus callosum Skeletal survey Severe metaphyseal dysplasia MRI Absent corpus callosum Pachygyria Diagnosis of lethal skeletal dysplasia Profoundly hypotonic with no suck or gag Episodes of hypoventilation NG tube fed 2
3 Discharge planning meeting Parents Outreach Neonatal consultant Hospice consultant Health visitor Discharged home day 12, written care plan given to parents Discharged with supply of oramorph and rectal diazepam Daily visits from neonatal outreach team 3 hourly NG tube fed, gaviscon Seizure day 14 Prolonged apnoeic episodes day 16 Home visit by neonatal consultant, not distressed Died day 17 at home Case 3 Born at term by NVD, BW 2940g First baby Presented with stridor within hours of birth Responded to CPAP Intubated for transfer to LGI on day 3 Patau s (trisomy 13) Referred to ENT for laryngoscopy On arrival noted to be dysmorphic Microphthalmia? Fused eyelids Broad nasal bridge Micrognathia Discussion with parents No laryngoscopy Ventilator dependent due to airway issues Poor prognosis Urgent FISH 3
4 Transferred ventilated to hospice Transfer done by LGI team Taken to family room with extended family Extubated in bedroom Spent time in garden Photographer with family Family slept overnight in bedroom together Died early next day Background 70-90% of neonatal deaths are planned withdrawal of LSTs Time to plan end-of-life care But 98% of neonatal deaths occur in hospital Why? Uncertainties amongst clinical teams Which babies are eligible? Use of analgesia/sedation Artificial feeding/fluids Practical issues with transfer Out of hours care Lack of knowledge Lack of awareness Does it matter? Bliss Baby Charter 2009 Units should have links with children s hospices to support parents and their choices on their baby s place of death ACT Neonatal Pathway 2009 Professionals should explore with parents where they wish their baby to be cared for 4
5 Practicalities Where appropriate families should be offered choice of place for end-of-life care MDT discharge planning meeting Neonatal staff Outreach/community nursing GP/health visitor Hospice staff Parents Written agreed care plan Summary of condition Medications/feeding Plans for management of deterioration Plan for end-of-life 24 hour contact numbers Named lead professional What to do after death Regular reviews Limitation of treatment agreement Important for transfer Feeding/nutrition Ensure parents know what to expect Plan discharge time carefully If going home Ensure family have equipment and medication they need Ensure out of hours cover in place Follow up Feed for comfort not growth If baby not feeding Consider low volume NG feeds if unsettled Parenteral feeds/fluids rarely necessary Can withdraw feeds/fluids Breast feeding can provide non-nutritive comfort, and may be important to Mum Challenges Requires change of NICU culture Knowledge/misconceptions Questions? Resources Out of hours support Hospice capacity 5
6 References Bliss: The Bliss Baby Charter Standards, 2009 ACT: A Neonatal Pathway for Babies with Palliative Care Needs, 2009 BAPM: Palliative care (supportive and end of life care): A framework for clinical practice, 2011 GMC: Treatment and care towards the end of life: good practice in decision making,
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