Perinatal Palliative

Care

• Professor and Section Head, Palliative Medicine, University of Manitoba• Medical Director, Adult & Pediatric Palliative Care, Winnipeg Regional Health

Authority

Mike Harlos MD, CCFP, FCFP

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?

Dire

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es

Settin

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Clinical

Timing

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”

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?

Initiating Conversations

“What if…?“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?

• 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?

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

Disease-focused Care(“Aggressive Care”)Disease-focused Care(“Aggressive Care”)

Patient/Family

Understanding and

Expectations

Health Care Team’s

Assessment and

Expectations

What

if…?

Elements of Neonatal Palliative CareBest 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

Live Birth

Approach to comfort in first few minutes

Next 1 – 2 hoursNext 1 – 2 hours• Try feedingTry feeding

• Connections & legacyConnections & legacy

Next 3 – 4 hoursNext 3 – 4 hoursFeeding/hydrationFeeding/hydrationdecisions if not feedingdecisions if not feeding

By 12 – 24 hoursBy 12 – 24 hoursExplore options for care settingExplore options for care setting

e.g. palliative care at home?e.g. palliative care at home?

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 MedsDrug Tmax (min) Bioavailability (%)

Midazolam1,2 11 – 14* 55 – 83

Fentanyl3,7 5 71 – 89

Sufentanil3 10 78

Hydromorphone4 20 – 25 55

Ketamine6 20 45

1. 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

2. 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

3. Dale O, Hjortkjaer R, Kharasch ED; Nasal administration of opioids for pain management in adults; Acta Anaesthesiol Scand. 2002 Aug;46(7):759-70

4. 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

5. 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

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.

7. 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

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

•Reasonable to start with recommended mg/kg •for IV dosing and adjust empirically

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

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

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

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

500 – 1000 gm

Based on Fetal Assessment or gestational age < 27

weeks

500 – 1000 gm

Based on Fetal Assessment or gestational age < 27

weeks

> 1000 gm

Based on Fetal Assessment or gestational age > 27

weeks

> 1000 gm

Based on Fetal Assessment or gestational age > 27

weeks

Intranasal Fentanyl Preparation Prior To Delivery

Based on Estimated Birth Weight

Intranasal Fentanyl Preparation Prior To Delivery

Based on Estimated Birth Weight

• administered q 10 min prn, up to 3 doses within a 30 min period