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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

thank you for giving me aliveness
“Thank you for giving me aliveness”

Jonathan – 6 yr old boy terminally ill boy

Ref: “Armfuls of Time”; Barbara Sourkes


“What if…?

Palliative Care… The “What If…?” Tour Guides

What would things look like?

Time frame?

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?

Disease-focused Care

(“Aggressive Care”)


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?

approach to prenatal palliative care consult
Approach To Prenatal Palliative Care Consult

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

Autopsy/coroner/tissue donation

Bereavement follow-up


Communicating with families

  • Exploring decisions
  • Coordinating care




Understanding and


Health Care Team’s

Assessment and


initiating conversations
Initiating Conversations
  • Normalize

“Often people in circumstances similar to this have concerns about __________”

  • Explore

“I’m wondering if that is something you had been thinking about?”

  • Seek Permission

Would you like to talk about that?


use gentle, but direct language around death and dying

  • these are typically non-survivable conditions… the parents should not feel as though they are deciding whether their child will live or die – this has already been determined by the condition
  • physical changes can be disturbing (colour, secretions, breathing patterns)… these are strictly physical changes that happen as the body’s systems shut down; they are not who their child is and do not reflect the experience of the child
  • palliative care is not “doing nothing”, or “comfort care only”, but re-focusing of active and aggressive care in the context of a non-survivable condition

By 12 – 24 hours

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

Try feeding

Connections & legacy

Live Birth

Approach to comfort

in first few minutes

  • Mu-1 and mu-2 opioid receptor agonist
  • Metabolized in liver to morphine-3-glucuronide & morphine-6-glucuronide
    • Premature infants preferrentially metabolize to M-3-G
  • Excretion via kidneys





Safety short & long term established in infants

Side effects


Constipation & delayed GI motility

CNS depression

Respiratory depression


  • Duration of action approximately 4 hours
  • PO
    • 30-50% bioavailablility
    • Onset 20-30 min with peak 60 min
  • Transmucosal
    • ~55% bioavailability
    • Onset 2-5 min with peak 15-45 min
  • Intravenous
    • 100% bioavailability
    • Onset 5 min with peak <30 min
  • Uses & side effects similar to morphine
    • Main metabolite is hydromorphone-3-glucuronide with similar characteristics to M3G
    • No production of H6G
  • More lipophilic
  • Potency 3-10 times that of morphine
    • Typically use 5:1 for conversion
  • Duration of action approximately 4 hours
  • PO
    • 62% bioavailablility
    • Onset 15-30 min with peak 30-60 min
  • Transmucosal
    • 55% bioavailability
    • Onset 5 min with peak 20-25 min
  • Intravenous
    • Onset 5 min with peak 15-20 min
  • Synthetic opioid
  • Agonist to mu-1 and delta opioid receptors
  • Usually considered to be 80-100 times potency of morphine
    • May be only 13-20 times potency in infants
  • Metabolized in liver to inactive compounds
    • Less histamine release
    • Chest wall rigidity (usually anesthetic doses)
  • Infants may develop more tolerance
  • Not efficacious PO due to metabolism
  • Duration up to 60 min
  • Intravenous
    • Onset 1-3 minutes with peak 6 minutes
  • Transmucosal
    • Bioavailability ~70%
    • 5-15 min with peak at 13 min
  • Transdermal
    • Doses generally not appropriate for infants




Muscle relaxation


Action via gamma-amino butyric acid

Metabolized to 1-hydroxy-midazolam

  • Side effects
    • Hypotension & respiratory depression (esp with opioids)
    • Myoclonus in infants
    • Temporary nasal irritation without physical damage
  • Duration of action approximately 30-60 minutes
  • PO midazolam
    • 25-35% bioavailablility
    • Onset 15-30 min with peak 30-60 min
  • Transmucosal
    • 50-83% bioavailability
    • Onset 2-5 min with peak 10-15 min
  • Intravenous
    • Onset 1-5 min with peak 15 min
Originally used as an antipsychotic in 1950’s








Metabolized in liver

Side effects


Orthostatic hypotension with IV use

Dystonic reactions, TD, NMS

Reactions similar to atypical antipsychotics

Anti-cholinergic side effects (dry mouth, flushing, constipation)

  • Little data given how old medication is
  • Duration 2-4 hours regardless of administration
  • PO
    • 50% bioavailability
    • 10-15 minute onset with peak in 1-3 hours
  • Transmucosal
    • No experimental data
    • Onset rapid clinically (<10 minutes)
  • Intravenous
    • Rapid (minutes) onset with peak at 30 minutes
  • Muscarinic-cholinergic antagonist
  • Uses
    • Decrease secretions
    • Prevent vagally-induced bradycardia
  • Does not cross blood-brain barrier
  • Renally excreted (reduce dose in renal failure)
  • Poor data given blood levels do not correlate to clinical response
  • Oral
    • Poor absorption (~5% bioavailability)
    • Onset 50 minutes with peak at 60-90 minutes
    • 8-12 hour duration for anti-sialogogue
  • Transmucosal
    • No data
  • Intravenous
    • Onset 1 min with peak in <10 min
    • Duration 2-3 hours
  • Non-selective muscarinic-cholinergic antagonist
  • Crosses blood-brain barrier
  • Use
    • Decrease secretions
    • Sedation desired (or at least not unwanted)
  • PO
    • Poor bioavailability (3-27%)
    • Onset + peak in 30-60 min with 4-6 hour duration
  • Transdermal
    • Onset 6-8 hours with duration of effect 72 hours
  • Transmucosal
    • 83% bioavailable
    • Peak drug at 22 min (effect peak @ 1 hour)
  • Intravenous
    • Onset + peak in 4-10 min with 2 hour duration

NB: limited or no published data regarding info in shaded areas

Developed by Chris Hohl MD, FRCPC


Reasonable to start with recommended mg/kg

for IV dosing and adjust empirically

Intranasal Meds

* Available to the cerebral cortex 2 – 5 min. after nasal use5

  • P. D.Knoester ; Pharmacokinetics and pharmacodynamics of midazolam administered as a concentrated intranasal spray. A study in healthy volunteers; Br J Clin Pharmacol. 2002 May;53(5):501-7
  • Rey E. et al; Pharmacokinetics of midazolam in children: comparative study of intranasal and intravenous administration; Eur J Clin Pharmacol 41(4) 1991; 355-357
  • Dale O, Hjortkjaer R, Kharasch ED; Nasal administration of opioids for pain management in adults; Acta Anaesthesiol Scand. 2002 Aug;46(7):759-70
  • Coda BA, Rudy AC, Archer SM, Wermeling DP; Pharmacokinetics and bioavailability of single-dose intranasal hydromorphone hydrochloride in healthy volunteers; Anesth Analg. 2003 Jul;97(1):117-23
  • Fisgin T et al; Effects of intranasal midazolam and rectal diazepam on acute convulsions in children: prospective randomized study; J Child Neurol. 2002 Feb;17(2):123-6
  • Yanagihara Y et al; Plasma concentration profiles of ketamine and norketamine after administration of various ketamine preparations to healthy Japanese volunteers; Biopharm Drug Dispos. 2003 Jan;24(1):37-43.
palliative care in the community
Palliative Care in the Community
  • What needs to be considered?
    • Family awareness and desire to take child home
  • Who is involved?
    • Pediatrician / Family Physician
    • Specialists
    • Home Care
    • Palliative Care Team
  • What is involved?
    • Develop a care plan
      • Letter of Anticipated Home Death
      • Advance care plan with DNAR
      • discussion of autopsy/tissue donation
      • anticipate symptoms and evaluate routes of medication administration
    • Preparation of family
    • Insure responsiveness and availability at all times