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Prenatal palliative care

Prenatal palliative care. Get a pic’. Overview. What is palliative care? What is prenatal palliative care? Goals Infants/families appropriate for palliative care services Specific aspects of decision-making and support Our program When to consult Hopes and dreams.

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Prenatal palliative care

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  1. Prenatal palliative care Get a pic’

  2. Overview • What is palliative care? • What is prenatal palliative care? • Goals • Infants/families appropriate for palliative care services • Specific aspects of decision-making and support • Our program • When to consult • Hopes and dreams

  3. What is palliative care? • Relief of physical, emotional, social, and spiritual suffering in patients and their families

  4. Palliative care = end-of-life care Palliative care is symptom management Palliative care goals and life-prolonging goals can be pursued simultaneously Palliative care includes transition to end-of-life care and end-of-life care

  5. Palliative care is multidisciplinary • It takes way more than doctors • It doesn’t work if it’s too hierarchical • Good care includes: • nurses psychologist/psychiatrist • nurse practioners child life specialist • art/music therapists physicians • social worker bereavement experts • chaplain school representatives • ethicist child and family

  6. Palliative careOLD MODEL

  7. Palliative careNEW MODEL

  8. What is prenatal palliative care?

  9. Allie

  10. Allie • Healthy 25YO G1P0 • Prenatal U/S revealed hydranencephaly • Parents told this is invariably fatal • Parents did not prepare for live birth

  11. Allie • Allie was born pink, robust, beautiful!

  12. Allie • She did not die. • Her parents were confused. • She was sent home with comfort measures. • She had trouble feeding at home. • Parents brought her back to the hospital for NG feeding.

  13. Allie • She eventually fed on her own and thrived. • She had profound developmental delay. • She had many medical complications, but gave her mother great joy. • She died suddenly at 20 months of age. • Her parents celebrate her life, but harbor anger over how unprepared they were for the possibility she might live.

  14. Lessons learned • Parents need to hear the full spectrum of possibilities. • Failure to address this spectrum of possibilities can lead to anger, guilt. • If they can “expect the unexpected” they might handle the “unexpected” better • Advanced care planning can apply to the unborn infant, just as it does with adults

  15. Michael

  16. Michael • 29YO woman with a twin gestation • One infant was healthy. • The other had a lethal cardiac abnormality. • Her sister (a social worker) called us to ask if we did prenatal palliative care consults. • We took a deep breath and said, “well we do now!”

  17. Michael • We discussed the case with the obstetricians, neonatologists and cardiologists • We met with the parents: • Birth plan: carry to term • no resuscitation in D.R. • After birth: room in with mother • comfort measures only • home with support if needed

  18. Michael • The unaffected twin was healthy. • Michael had some respiratory difficulties and died within a few hours. • Parents, grandparents, the older daughter, and the twin were all present. • The family was prepared, together, and remains grateful that they can still both grieve Michael’s loss and celebrate his life.

  19. Lessons learned • If families know what might happen, they can better prepare. • Systematic advance care planning can work in the prenatal setting. • There is potential to find some joy in what is otherwise a tragedy.

  20. What is prenatal palliative care? • It is caring for a fetus in trouble and its parents • What to do • What not to do • Symptom management • Preparing the family • Bereavement

  21. What are the goals of prenatal palliative care? • To help families with making choices about pregnancy management and after birth care: • In the best interests of the baby • Incorporate their personal/religious beliefs

  22. Infants/families appropriate for prenatal palliative care • Congenital anomalies incompatible with life • anencephaly • skeletal dysplasia • renal agenesis • Congenital anomalies incompatible with long life • holoprosencephaly • trisomy 13, 18 • cardiac anomalies • Infants at the limits of viability

  23. Key phases in prenatal palliative care • The decision whether to carry to term • Support during the pregnancy • Intrapartum care • If the baby survives . . . • If the baby dies . . .

  24. Decision to carry to term • Women were often advised to terminate pregnancy if a major fetal problem • Termination is not the answer for everyone • Create a safe place to discuss other options in a non-judgmental way: • continue with the pregnancy • how to deliver • comfort care from the time of birth vs. more aggressive medical care

  25. Support during pregnancy • Acknowledge the difficulty carrying a potentially ill infant: • A joyful time? • Hard to be with other pregnant women, friends • Facilitate attachment: • create memories • does the baby have a name?

  26. Intrapartum care • C-section vs. vaginal delivery • Resuscitation? • Routine neonatal care? • Treatment of symptoms • Spiritual issues

  27. If the baby survives . . . • Have a pediatrician • Plan of care: • comfort? • medical procedures? • DNR? • home vs. hospital?

  28. If the baby dies . . . . • Continue to build memories • photos • footprints, handprints, lock of hair • bathe, dress • “Now I lay me down to sleep” • Bereavement support • funeral arrangements • try to attend funeral/calling hours • follow-up • formal bereavement services available • Genetic testing / autopsy • Siblings

  29. Published data??? • Fetal Concerns Program • 185 prenatal consultations • 117 chose termination at < 24 weeks • 32 had elective induction at > 24 weeks • delay in diagnosis/referral • morally opposed to termination • 36 expectant management • uncertain outcome • morally opposed to termination • Leuthner S, Jones EL. Fetal Concerns Program. MCN 32:272, 2007

  30. More data • 20 prenatal consultations • 12 renal anomalies • 5 trisomy 13, 18 • 3 skeletal dysplasia • 12 pregnancies terminated • 8 families decided to carry to term: • 2 stillbirths • 6 live births • Median survival 1 day (1.5hr – 3 weeks) • Breeze ACG et al. Prenatal palliative care. • Arch Dis Child Fetal Neonatal Ed 92:F56, 2007

  31. Our program • Started in 2008 • Palliative care pediatrician, neonatal NP • We attend the Prenatal Diagnosis Meetings • at URMC • Joint consultations with the neonatologists • Continued involvement with the infant / family when the child is born • Bereavement follow-up

  32. Consultations thus far • Diagnosesn • Trisomy 18 3 • Anencephaly 2 • Skeletal dysplasia 2 • Hydrocephalus 1 • Renal agenesis 1 • Cardiac 1 • PROM 1

  33. When to consult? • A condition incompatible with life • A condition incompatible with long life • A family struggling about what to do • An infant at the limits of viability • When a family asks . . .

  34. Hopes and dreams • Create an interdisciplinary perinatal palliative care team • Early consultation • Broader spectrum of diagnoses • Closer working relationship with OB • Partnership with CompassionNet • Expanded research program

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