neonatal palliative care- case studies and approach a presentation for a tertairy level nicu team,...
TRANSCRIPT
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
AWA/Jones and Walker Partnership 26
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
AWA/Jones and Walker Partnership 37
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.
AWA/Jones and Walker Partnership 44
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