Scott Maurer MD Assistant Professor of Pediatrics University of Pittsburgh School of Medicine Medical Director Supportive Care Program 5 November 2015 Overview Medical decision making at the endoflife ID: 917130
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Slide1
Decision Making in Pediatric Palliative Care
Scott Maurer, MDAssistant Professor of PediatricsUniversity of Pittsburgh School of MedicineMedical Director, Supportive Care Program5 November 2015
Slide2Overview
Medical decision making at the end-of-lifeUnderstanding the DifficultyGoal Setting in Palliative CareHow to approach difficult decisionsHow can we support families and patients?Advance care planningCare coordinationBereavement support
Slide3The (un)nature of the situationDeath in childhood is rare
We are not designed to bury our childrenEnd-of-life decision making for children is not natural
Slide4Decision Making
Parents make many decisions for their children, but the most difficult are:To enroll on Phase I therapyDNR StatusWithholding/withdrawing artificial life-sustaining therapiesDiscontinuation of cancer directed therapy
Hinds, PS, et al.
Cancer Nurs
. 2001.
Slide5The issue of regret
After the death of a child parents may have decisional regret about:choosing the last course of chemotherapynot talking with their child about deathnot choosing the location of death
Mack, J., et al.
J Clin Oncol
. 2008.
Wolfe, J., et al.
J Pain Symptom Manage
. 2008.
Kreicberges, U., et al.
NEJM
. 2004.
Slide6Morbidity in the bereavement period
Significant numbers of parents have difficulty with unresolved grief and experience:High rates of depressionSleep disturbanceIncreased physician visitsGreater likelihood to miss work
Lannen, PK. , et al.
J Clin Oncol
. 2008.
Slide7The Role of the “Good Parent”
A sense of being a “good parent” to the dying child can:Provide emotional relief to the familyPossibly decrease morbidity in the bereavement period
Hinds, PS., et al.
J Clin Oncol
. 2009.
Slide8What is a “good parent” anyway?
Someone who:Makes informed, unselfish decisions in the child’s best interestMeets the child’s basic needs
Remains at the child’s side
Protects and advocates for the child
Shows love
Prevents suffering
Teaches moral values
Hinds, PS., et al.
J Clin Oncol
. 2009.
Slide9How do parents make decisions?
Parents want to “do right” by their childSuffering plays a key role
Suffering
Maurer, S, et al.
J
Clin
Oncol
. 2010
Slide10What do parents want?
Parents want us to provide thoughtful care at the end-of-life:Support the decisions they make.Treat their child “the same.”Make sure their child doesn’t suffer.They also want us to know how much they appreciate the care we provide.
Maurer, S, et al.
J
Clin
Oncol
.
2010
Slide11Setting Goals
Approaching Difficult Decisions
Slide12A framework for decision making
Prognosis
Hope
Expectations
Decisions
Slide13Hope and Prognosis
Universally parents want their physician to be honest while providing hope
Parents are more likely to feel hopeful when they recalled detailed prognostic discussions
Increased disclosure correlates with
Increased trust
Decreased emotional distress
Mack,et al.,
J Clin Oncol
, 2007
Slide14A framework for decision making
Goals
Prognosis
Hope
Expectations
Slide15GoalsCureLife prolongation
Life prolongation with an emphasis on quality of lifeComfortValue of being realistic versus being neutralRecognition of bias we bring to the tableTruly believing that there isn’t a right or wrong answer
Slide16How goals change
High
Win
Eradicate
Mild
Live with
Halt Progress
Cure
Moderate
Fight
Response
Life Prolongation
Minimal
Embrace
None
Comfort
Treatment
Intensity
Attitude
Disease
Effect
Slide17A framework for decision making
Decisions
Prognosis
Hope
Expectations
Goals
Slide18Decisions
Advance Care Planning
Symptom Control
Social, Emotional, & Spiritual Care
Care
Coordination
Bereavement Care
Slide19Advance Care PlanningWhat are the medical decisions that this family needs to make?
Withholding disease directed therapy?Participating in a clinical trial?Withdrawing or withholding treatments with curative intent?Do not resuscitate (DNR)?Preferred location of death
Slide20The Gray Zone
Slide21Symptom ControlEnumerate symptoms that are distressing to the child and family
Offer suggestions to manage each symptom regardless of its causeInterventions must be considered in the context of the goals of care
Slide22Social, Emotional, Spiritual CareNeed for Psychologist involvement
Need for increased Social Work involvementNeed for Child Life involvementNeed for family counselingNeed for increased Chaplain involvementThe importance of talking
Slide23Care Coordination
Integrate the plan of careShare plan across disciplines
Slide24Slide25Care Coordination
Integrate the plan of careShare plan across disciplinesMultidisciplinary Interdisciplinary Share plan across settingsClinicHospitalHome Health
Hospice
Slide26Bereavement CareDealing with the aftermath
Slide27Helping Bereaved FamiliesMore intense grief is associated with the death of a child when compared to the death of a spouse or a parent
Bereaved parents have increased risk of:AnxietyDepressionSuicidal ideationProlonged griefPoor quality of lifePoor social function
Middleton, et al.
Aust
NZ J Psych. 1998.
Hendrickson. Pall Support Care. 2009.
Rosenberg, et al. PBC. 2012.
Slide28SiblingsSiblings suffer during the child’s illness and after their death
Psychosocial issues:Sleep disturbanceLow self-esteemDelayed maturitySymptoms are worse in the first yearIncreased anxiety/depressionIncreased use of alcohol and illicit drugsAlmost all siblings claim to be affected by the loss many years later
Rosenberg, et al. JPSM 2014.
Eilegard
, et al.
Psychooncology
. 2013
Slide29Modifiable FactorsParents with more distress:
Believed their child was sufferingNoted significant financial concernsNoted treatment goals which weren’t well aligned with the goal of careSiblings with more distress:Had poor communication with parents at and after the time of deathFelt unprepared for their sibling’s deathDid not have an opportunity to say goodbye
Rosenberg, et al. JAMA
Peds
. 2013
Rosenberg, et al. JPSM 2014.
Slide30New Standards of CareLegacy building
Links to local mental health resourcesAccess to other bereaved parentsSpiritual supportReduction of financial burdensAccess to support for a minimum of 13 monthsConnectivity to the treating institutionOpportunity for personal growthEducation and support of staff
Slide31Patient and family support: Prior to the death
Good bereavement care begins at the time of consultEarly palliative care involvementLegacy buildingCompanion patient and family in griefInterdisciplinary Team Approach
Slide32Family support: At the time of the death
Family time with their childMementos/Legacy BuildingSibling SupportLeaving without their child
Slide33Family support: Bereavement follow up
13 Month follow upRegular contact with families via phone, e-mail, or in personProvision of local resourcesGrief groupsLocal mental health providersAutopsy Review with the physician and consultantsMemorial Service
Legacy opportunities
Volunteerism
Fund raising
Education
Slide34Support and Education of StaffSupport
Scheduled debriefings for nursing staff on various floors and clinicsEmergency debriefings after acute eventsEducation:Empowerment of staff for:Care of patientsCare of parents/familyCare of self
Slide35Questions