Transcript Choices in Palliative Care

Perinatal
Palliative
Care
Mike Harlos MD, CCFP, FCFP
• Professor and Section Head, Palliative Medicine, University of Manitoba
• Medical Director, Adult & Pediatric Palliative Care, Winnipeg Regional Health
Authority
The presenter has no
conflicts of interest to
disclose
Objectives
• 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
• To learn about the overall management of complex clinical
scenarios in perinatal palliative care
WHO Definition of
Palliative Care for Children
• Palliative care for children is the active total care of the
child's body, mind and spirit, and also involves giving
support to the family.
• It begins when illness is diagnosed, and continues
regardless of whether or not a child receives treatment
directed at the disease.
• Health providers must evaluate and alleviate a child's
physical, psychological, and social distress.
• Effective palliative care requires a broad multidisciplinary
approach that includes the family and makes use of
available community resources; it can be successfully
implemented even if resources are limited.
• It can be provided in tertiary care facilities, in community
health centres and even in children's homes.
“Thank you for giving
me aliveness”
Jonathan – 6 yr old boy terminally ill boy
Ref: “Armfuls of Time”; Barbara Sourkes
Choices in Palliative Care –
What considerations might
limit potential options?
BACKGROUND
• neonatal deaths remain a reality in health care,
and with prenatal diagnosis a palliative approach
to care can often be planned
• UK Stats:
- 98% of neonatal deaths occur in an NICU
- few are supported to die at home or in hospice
- palliative care is only routinely provided for babies
and children over 28 days old
• If newborns could tell us what they thought of
these stats, what would they say?....
Potential Palliative Scenarios
 known lethal fetal anomalies exist; potential need
for aggressive symptom management with
noninvasive routes of administration
 withdrawing life-sustaining treatment
 withholding / non-escalation of interventions
 comfort care during terminal phase of irreversible
organ failure (e.g.. gut, renal, hepatic)… may be
days to weeks
Wilkinson D, Thiele P, Watkins
A, De Crespigny L. Fatally
flawed? A review and ethical
analysis of lethal congenital
malformations. BJOG.
2012;119:1302-1308.
2012 Report On The Ten Most Common Causes of Infant
Deaths In U.S.A. In 2009
Kochanek KD, Kirmeyer SE, Martin JA, Strobino DM, Guyer B.Pediatrics. 2012 Feb;129(2):338-48
Significant potential for anticipating palliative
needs of newborn
Potential Roles For Neonatal Palliative Care

Explore potential “what-if” scenarios and inform the discussion
about possible approaches

Regardless of the prognostic certainty or the approach taken,
ensure vigilance towards:
•
•
•
•
•
Comfort of the newborn
Support of family
Support of team
Connections – siblings, other relatives
Legacy/Memory – footprints, photos, etc

Participate in dialogue around difficult ethical considerations

On occasion – consolidate information from multiple involved
specialists; serve as a steady presence in the context of weekly
turnover of attending physicians

Participate in exploration of alternate care settings
Life-And-Death Decisions?
 In situations where death will be an inescapable
outcome, family may nonetheless feel that their choices
about care are life-and-death decisions (treating
infections, hydrating, tube feeding, etc.)
 It may be helpful to say something such as:
“I know that you’re being asked to make some very difficult
choices about care, and it must feel that you’re having to
make life-and-death decisions. You must remember that this is
not a survivable condition, and none of the choices that you
make can change that outcome.
We know that because of her illness, she is on a path towards
dying. We are asking you to help us choose the smoothest path,
causing least distress for your baby”
Initiating Conversations
1. Normalize
“Often people in circumstances similar to this have
concerns about __________”
2. Explore
“I’m wondering if that is something you had been thinking
about?”
3. Seek Permission
Would you like to talk about that?
Palliative Care… The “What If…?” Tour Guides
•
•
“What if…? •
•
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”)
Patient/Family
Understanding and
Expectations
Health Care Team’s
Assessment and
Expectations
Elements of Neonatal Palliative Care
Best practice guidelines: Palliative care for the newborn in the United Kingdom L. de
Rooy, N. Aladangady, E. Aidoo; Early Human Development 88 (2012) 73–77

Assessment: baby's current clinical state, focusing on pain, agitation,
dyspnea and other symptoms

Communication: verbal/ written communication with parents

Review of medications: stop all medications which do not add to the
baby's comfort, actively treat all symptoms.

Review of interventions: stop all unnecessary interventions and
observations, actively consider interventions which can increase comfort,
e.g. skin-to-skin contact.

Resuscitative care plan: record details of what should, and should not be
provided in case of deterioration

Provision of hydration/nutrition: provide fluids/feeds through the least
invasive route

Communication with MDT

Review: palliative care is a process not an event, review care plans and
adjust as needed

Other care options: consider whether the baby may be best cared for in
other settings e.g. hospice or home.
Approach To Prenatal Palliative Care
Consult

Our program has had 68 prenatal consults since Nov. 2006

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 and expectations RE delivery

plan for potential threats to comfort (almost always dyspnea)

Consider pre-drawn medications (fentanyl) for nasal/buccal
administration for possible pain, resp distress, restlessness

Home as a possible care setting if baby survives long enough

Autopsy/coroner/tissue donation

Bereavement follow-up
By 12 – 24 hours
Explore options for care setting
e.g. palliative care at home?
Next 3 – 4 hours
Feeding/hydration
decisions if not feeding
Next 1 – 2 hours
• Try feeding
• Connections & legacy
Live Birth
Approach to comfort
in first few minutes
Helping Families At The Bedside: Physical Changes
 physical changes of dying can be upsetting to those at the
bedside:
– skin colour – cyanosis, mottling
– breathing patterns and rate
– muscles used in breathing
 these reflect inescapable physiological changes occurring
in the dying process.
 may be comforting for families to distinguish between who
their loved one is - the person to whom they are so
connected in thought and spirit - versus the physical
changes that are happening to their loved one's body.
Potential Pitfalls Experienced
Through Our Prenatal Involvement
 Assumptions that pediatrics and/or neonatology does
not need to be involved in delivery or in postnatal care
if palliative care involved
 Over-interpreting what the “palliative” label means
about other aspects of care and support for the baby
 Misconception that families can’t change their minds
and opt for aggressive care
Meet Matthew…
• Prenatal Dx Trisomy 18
• Prenatal palliative care
consult May 22, 2008
• reviewed potential
outcomes and
approaches
• Induced July 14, 2008
on low-risk unit (LDRP)
• Home within 16 hrs
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
– Ensure responsiveness and availability at all times
Fentanyl
• highly potent opioid – small volumes needed
• lipophilic – absorbed readily through
transmucosal membranes and blood-brain
barrier
• expanding pediatric and adult literature on
intranasal use of the injectable preparation for
pain and dyspnea management
Intranasal Fentanyl
• TMAX 5 – 15 min.
- compare with TMAX of 138 minutes for
buccal morphine
• therapeutic levels reported as short as 2
minutes
• bioavailability 71 – 89%
• not irritating to the nasal mucosa
Intranasal Meds
Drug
Tmax (min)
Bioavailability (%)
11 – 14*
55 – 83
Fentanyl3,7
5
71 – 89
Sufentanil3
10
78
20 – 25
55
20
45
Midazolam1,2
Hydromorphone4
Ketamine6
1.
2.
3.
4.
5.
6.
7.
* 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.•Reasonable
A study in healthy volunteers;
Br J with
Clin Pharmacol.
2002 May;53(5):501-7
to start
recommended
mg/kg
Rey E. et al; Pharmacokinetics of midazolam in children: comparative study of intranasal and intravenous administration;
•for IV dosing and adjust empirically
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.
Foster D, Upton R, Christrup L, Popper L. Pharmacokinetics and pharmacodynamics of intranasal versus intravenous
fentanyl in patients with pain after oral surgery. Ann Pharmacother 2008;42: 1380e1387
MAD300® Device
• Syringe is filled with an extra 0.1 ml medication to accommodate for
device dead space
• our practice is to reuse the device multiple times with the same
patient
• device is cleared with air to restore dead space prior to next dose
Example #1
 Newborn with Trisomy 18 and a cardiac defect
 Seen by palliative care team twice prenatally, when in labour and
after birth of baby on LDRP
 Lived 13 hours and 9 minutes
 8 doses of Fentanyl administered for respiratory distress
 First dose given at 58 min. Next doses at 1 hr + 4 min, at 2 hr + 52
min, then at 3 hr + 40 min. At 9 hr + 5 min: cluster of 4 doses given
within 58 min. Increased dose, but no further fentanyl required
 Last dose administered 3 hrs + 6 min prior to death
 Charted as effective in calming baby
Example #2
 Extremely premature infant with NEC and sepsis, intubated and
ventilated
 Seen by palliative care team in NICU 6 days prior to death, plan for
withdrawal of life sustaining treatment
 IJ line had been running Morphine continuous infusion for one month,
switched to Fentanyl infusion 2 days prior to extubation. Lost IJ line
immediately prior to planned extubation.
 Given 4 doses of intranasal fentanyl. Two doses prior to extubation (32
min and 14 min prior). Two doses given after extubation at 3 min and
then 26 min post-extubation (this last dose was given 81 minutes prior
to death). One dose of Midazolam intranasally prior to extubation.
 Died at 44 days of age in NICU (2 hr + 26 min after extubation)
 Effective in managing respiratory distress – “well sedated and
comfortable” and “Looks settled”
Common Concerns About Aggressive Use
of Opioids at End-Of-Life
• How do you know that the aggressive use
of opioids for dyspnea doesn't actually bring
about or speed up the patient's death?
• “I gave the last dose of morphine and he
died a few minutes later… did the
medication cause the death?”
1. Literature: the literature supports that opioids
administered in doses proportionate to the degree
of distress do not hasten death and may in fact
delay death
2. Clinical context: breathing patterns usually seen in
progression towards dying (clusters with apnea,
irreg. pattern) vs. opioid effects (progressive
slowing, regular breathing; pinpoint pupils)
3. Medication history: usually “the last dose” is the
same as those given throughout recent hours/days,
and was well tolerated
Analgesia For Dying Infants Whose Life Support Is Withdrawn
Or Withheld
Partridge JC, Wall SN; Pediatrics 99(1) 1997; 76-79
n = 121 deaths related to withholding (n=13) or withdrawing (n=108) life support
Intranasal Fentanyl Preparation Prior To Delivery
Based on Estimated Birth Weight
500 – 1000 gm
Based on Fetal Assessment
or gestational age < 27 weeks
> 1000 gm
Based on Fetal Assessment
or gestational age > 27 weeks
1 mcg/dose
= 0.1 ml of 10 mcg/ml
= 2 mcg/kg for 500 gm
neonate and 1 mcg/kg for
1000 gm neonate
2.5 mcg/dose
= 0.1 ml of 25 mcg/ml
= 2 mcg/kg for 1250 gm
neonate and 1 mcg/kg for
2500 gm neonate
• administered q 10 min prn, up to 3 doses within a 30 min
period