Neonatal Palliative Care- case studies and ApproachA presentation for a tertairy level NICU team,

based around recent shared caseload.

Jo Griffiths22nd August 2013

Overview What is palliative care / What is neonatal

intensive care?

Case discussions

Practice and practical issues

Challenges

What is palliative care?Palliative care for [fetus, neonate or infant] with life limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond.

It embraces physical, emotional, social and spiritual elements and

focuses on the enhancement of quality of life for the [neonatal infant] and support for the family.

It includes the management of distressing symptoms [provision of short breaks] and care through death and bereavement.

ACT 2009

ACT 2009

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What is Palliative Care? (WHO, TFSL, BAPM)

Active, total care of patients & their familiesAddresses physical, psychosocial,emotional,

spiritual concerns associated w/ illnessRequires interdisciplinary collaborationGoal is achievement of best possible QOL

for patients & their familiesApplicable throughout course of care;

concurrent w/ attempts to prolong life

Two Major Goals of Critical Care

To save the lives of salvageable patients with reversible medical conditions

To offer the dying a peaceful and dignified death

Kollef MH. In: Curtis and Rubenfeld, Managing Death in the ICU, 2001

What is going through the minds of parents entering the foreign world of the NICU?

What are the goals of postnatal palliative care?

To help families with making choices about after birth care:

In the best interests of the baby Incorporate their Social/personal/religious beliefs To prevent and relieve suffering To support the best possible quality of life, regardless of the stage of illness or the length of that life.

ChallengesWhenWhoManaging uncertaintyJoint planning for survivalSupporting wishes for place of careEncouraging the ‘scary leap’ out of NNUHaving ‘That’ talkOur own feelings and beliefsEmpowering parents & offering choicePractical challenges

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CASES

Case 1: ATTerm infant with HIE : Thick meconium. Poor

apgars.Required I&V, cardiac compressions,

adrenaline, cooling, AEDs.

STEPS team asked to meet with family to discuss place of care / wishes

NG fed, no swallow, poor airway control.Family expressing desire not to prolong life

and to avoid suffering

IssuesParental understanding, parental valuesBurden vs benefitWhat is sufferingImmunisationsPlace of careWeaning monitoring / level of nursingEmpowering parents to careDealing with uncertainty about death lifeCultural aspectsWorking life

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Responding to Uncertainty, Early Intro of Palliative CareMaintain realism &

hope Provide intensive pain

& symptom management

Describe clinical condition as a whole

Evaluate benefits vs. burdens of treatments

Affirm parents’ efforts, love

Parents’ PerspectivesParents need to maintain a

parenting role: changing nappy, bathing, lotion, cuddling, kissing

Appreciate recognition of child as individual, likes and dislikes, dreams for the future, no matter how small

Want to be treated as partners, not as “visitors”, Contro, 2002

Need continuity of care to avoid need for “hypervigilance”, Dokken 2002, Heller, 2005

Need parent-to-parent networking (IOM, 2004)

SufferingWhen the burden outweighs the benefit,

(dependent on the values of the patient and family, not HCP or society at large)

Uncertainty is harder for parents to cope with than known bad outcomes

Sometimes identification is difficult; Concern about potential suffering can be as

disabling as actual suffering

Team’s Roles in Medical CareDetermine diagnosis

Make best estimate of prognosis

Determine all relevant medically appropriate, legally and ethically acceptable options

Elicit family philosophy, overall goals

Assist families to consider the choices through the lens of their priorities and make recommendations for care goals based on this and the physician’s experience

Ensure involvement of MDT to address physical, social, emotional, spiritual suffering

Team Ethical Obligations in Decision-Making

Acknowledge personal values and biases in recommendations

Recognize there is no “right” answerRemember the family lives with the

decisions forever

In practiceDiscussion regarding parental wishes and

fearsExploration of choices – place, time, caresQuality experiences – bath, walks, cuddlesReducing monitoring

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Discontinuing No-longer-beneficial ICU InterventionsDiscontinue bloodsDiscontinue monitorsDiscontinue weightsDiscontinue IV fluids, feeds, antibiotics

and other therapies not directed at comfort

Remove medical devices not needed Invite to bathe, change clothes, take

photos, hold, etcMove to private, family-centered location

Plan for ATEvolved over 2 weeksMonitoring discontinuedMove to bassinet Ty hafan childrens hospiceIncreasing parental confidenceMDT meetingsECP

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Emergency care planCompleted with parents after discussions in hospital

and hospiceWanted comfort & support of child, suction, airway

positioning, oxygen but no intubation, ambulance or hospital admission.

Discussed what to expect if deteriorating and possible causes

What the family should doWho is available to help1st contact at time of deathAlso discussed uncertainty – possibility of surviving

long term with disability

Palliative care and Disability or End of life?

Disability (DDA) Physical or mental impairment that

has a substantial and long term adverse effect on the ability to carry out normal day to day activities

Palliative care Care for children with life

threatening of life limiting conditions

Life-limiting conditions: No reasonable hope of cure and from which children or young people will die

Life-threatening conditions: Curative treatment may be feasible but can fail

Children with disability

Children with palliative care needs

Timing

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Curative/life-prolonging therapy

Relieve suffering(hospice)

Presentation Death

Therapy to Modify Disease(curative, life prolonging, or palliative in intent)

End of Life Care(Hospice)

Presentation Death

Bereavement Care

Therapy to Relieve SufferingAnd/or Improve Quality of Life

Palliative Care

Acute Chronic Advanced

Life-threatening

IllnessContinuum

Case 2Term infant with HIE and poor respiratory

drive.Emcs, fetal bradycardiaPoor apgars at birth.Severe neurological insult, central &

obstructive apnoeas

Differing parental expectations.Differing needs of family members.

Differences to AT

Infant’s abilitiesTiming ‘actively dying’Family dynamicsExtended familyFamily perceptions

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DiscussionsParents ‘Shell shocked’Grandparents encouraging mum to consider

alternativesAnxieties around needs of other childrenDiscussed Ty Hafan children’s hospiceSupport in the community - Neonatal

outreach nurse / palliative care consultant.Advanced care planningSupport around death and bereavement

DIFFICULT DISCUSSIONS

Same principles are essential to empower families.

As end of life is imminent, time constraints can occur & the luxury of reflection may not be possible.

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Language w. Unintended ConsequencesDo you want us to do everything possible?Will you agree to discontinue CARE?It’s YOUR decisionI think we should stop aggressive/ curative

therapy/ treatment/ support There is nothing more we can do

Helpful Language

I wish things were differentI hope he gets better, too…, but I think it is

very unlikelyWe have tried everything that might help and

unfortunately, he is too sick to respond. Perhaps we need to consider alternative goals of care

Communicating PrognosisPhysicians markedly over-estimate prognosisAccurate information helps patient / family

cope, planincreases earlier access to hospice, other

services (common lament), possibility of home death

Offer a range or average for life expectancy, acknowledge limits of predictionhope for the best, plan for the worstbetter sense over time

Reassure availability, whatever happens

Rapid transfer to hospiceChallenges

Hospice family support team able to prioritisePracticalities of extended familyTransfer

Car / ambulance Will he survive the journey? Police notification

Practical support in Hospice Symptom control anticipation Anticipatory prescribing Medical cover

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OUTCOMES

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Ensure time to gather supporters, familyGood symptom control.Ensure plans for celebrations, ritualsUnlimited visitationReaffirm decisions, reassure nothing else will workPrepare family for what the patient will look like, ask

them to consider how they want the day to goMemories – hand prints, painting, photos

What we want

FK Spent 3 days in the family flat at Ty hafanParents only for the first night, then joined by

siblings and grandparentsLots of photos taken, hand prints etcHad a bathWent for a walk in the gardensSiblings engaged at their individual level with

time to play and chat with play team.Died in mums arms after many, many

prolonged apnoeas.39

Symptom management

Minimal anticipated needAccess to analgesia, hyoscine and anti-

epilepticsCare plans shared with hospice teamConsultant review next dayTelephone advice over weekend.

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Poor respiratory driveAccess to anticholinergics, importance of

positioning

Explain to family exactly what will happen (red,white, blue, gasping or no breathing,)

More distressing to us than the infant.

Duration of survival, minutes to hours or days

Anticipate and Treat Symptoms to Rapid Resolution

Gasping at end of lifeOpioids only proven therapy for dyspnea

Do not shorten life span, even in this scenario (Wall and Partridge, Pediatrics, 1997)

Titrate to effect

AT1 week in Ty HafanParents supported to feel more comfortable

in being primary carersMDT – introduction of wider team, including

Community nursing and therapistsDischarged home with PPC home visitsRemains under PPC review, but main care

with Community teams.

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Ongoing discussions about uncertainty.

ECP remains in place.

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Stages of palliative care planning in the neonate

BAPM 2010

Families Benefiting from Palliative CareChronic, life-limiting conditionUncertain outcome Potential for severe disabilityDelivery at limits of viabilityPresence of life-threatening anomaliesOverwhelming illness not responding to

disease-directed interventionFamilies of stillborn or miscarried

fetuses

Case 3 EMRefered antenatally following diagnosis of

Edwards syndrome in utero.Support from Ty Hafan pre-birthDiscussions re parents wishes , joint plan

with obstetricians, neonatal team and PPC.

Sadly lived only a short while after birth

Ongoing bereavement support

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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 . . .

Barriers to Palliative CareContinued confusion that PC =

hospice=death Death = failure to health care professionalsSocietal expectation that children don’t dieInadequate PC training & experience of

providersFocus on “life-prolonging” interventions, not

providing CAREPaucity of evidence base, esp LT follow up of

families

Symptom controlAdvanced care planningAntenatal palliative careConsecutive planning & uncertainty

Compassionate extubationEthics

End of life care

“End of life care”

Ensuring a Smooth Transition from Hospital to Home or Hospice

Involves:Information for child, parents and extended family.Symptom ControlMedical/Nursing/Allied Professionals supportSetting up ‘End of Life’ On-Call‘End of Life’ PlansLegal AspectsOrganisation of Equipment/Medicines/Documentation

Summary: PC in the NICUEnsure accurate communication w/ empathetic

critical care cliniciansAscertain goals and values directly from familiesIncreased attention to prevention of pain, symptomsPlanning for all eventualitiesShared plans – symptom control & Emergency care

planningHelp with parent, sibling, GP and practical concernsAvoid misleading phrasesPalliative care teams can assist in NNUs

ABMU PPC - Get involvedMonthly breakfast meetings - open to allEducation - what do you want?Pathways and policiesForum meetings

SpR study day septemberECP study day ( & all wales Launch) December

Learn more

Final Challenge

What would you do if a family asked compassionate extubation at home?

Could we facilitate this?

( The answer was yes - a change to 2 years ago)

Thankyou