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Palliative Care Considerations with a Prenatal Diagnosis of a Potentially Non-survivable Fetal Condition. Mike Harlos MD, CCFP, FCFP Simone Stenekes RN, MN, CHPCN(c) David Lambert MD, BSc, FRCPC Chris Hohl MD, FRCPC
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Palliative Care Considerations with a Prenatal Diagnosis of a Potentially Non-survivable Fetal Condition
Mike Harlos MD, CCFP, FCFP
Simone Stenekes RN, MN, CHPCN(c)
David Lambert MD, BSc, FRCPC
Chris Hohl MD, FRCPC
Winnipeg Regional Health Authority Palliative Care Program - Pediatric Symptom Management & Palliative Care Service
To consider where pediatric palliative care may fit in the care of those with a potentially non-survivable fetal condition
To consider an approach to communication with families regarding perinatal palliative care
To review considerations for the management of symptoms in the newborn with an anticipated non-survivable condition
Jonathan – 6 yr old boy terminally ill boy
Ref: “Armfuls of Time”; Barbara Sourkes
Palliative Care… The “What If…?” Tour Guides
What would things look like?
Where care might take place
What should the patient/family expect (perhaps demand?) regarding care?
How might the palliative care team help patient, family, health care team?
The fetus-to-infant care when lethal anomalies are present is commonly fragmented due to the involvement of a variety of specialty areas.What if infants could tell us what they think of this?
Explore parents’ understanding of condition and potential outcomes (e.g.. intrauterine death, death during labour/delivery, death following delivery – potential time frames, possible symptoms, goals of care, opportunities for care settings)
If needed, develop an approach to discussing with siblings
Discuss care setting for delivery and expectations/birth plan
Consider pre-drawn medications (typically fentanyl and/or midazolam) for nasal/buccal administration for possible pain, air hunger, restlessness
Home as a possible care setting if baby survives for a few hours/days
Health Care Team’s
“Often people in circumstances similar to this have concerns about __________”
“I’m wondering if that is something you had been thinking about?”
Would you like to talk about that?
Begin the path home
Explore options for care settinge.g. palliative care at home?
Next 3 – 4 hours
Feeding/hydrationdecisions if not feeding
Next 1 – 2 hours
Connections & legacy
Approach to comfort
in first few minutes
Metabolized in liver
Orthostatic hypotension with IV use
Dystonic reactions, TD, NMS
Reactions similar to atypical antipsychotics
Anti-cholinergic side effects (dry mouth, flushing, constipation)Methotrimeprazine
Developed by Chris Hohl MD, FRCPC
for IV dosing and adjust empirically
* Available to the cerebral cortex 2 – 5 min. after nasal use5