Pediatric POST: Practical Approaches, Potential Pitfalls and Poignant Moments

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Pediatric POSTPractical Approaches, Potential
Pitfalls and Poignant Moments

• Melody J. Cunningham, MD
• Director, Pediatric Palliative Care
• Le Bonheur Childrens Hospital
• January 14, 2014

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Disclosures

• No financial disclosures
• No off-label uses of medications

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Pediatric Palliative Care and POST
Helping children live as well as possible for as
long as possible.
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Practical Approaches

• American Academy of Pediatrics guidance
• Sentinel study
• Disease trajectory and prognosis
• Relationship
• Family-centered
• Communication
• Approach without relationship

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AAP Policy Statement

• Enhance quality of life
• Ultimately terminal conditions
• Relief of symptoms
• Dyspnea, pain
• Relief from conditions
• Loneliness, fear
• Bereavement
• Ensure family can remain intact

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AAP Policy Statement

• Integrated Model the components of palliative
  care are offered at diagnosis and continued
  throughout the course of illness, whether the
  outcome ends in cure or death.

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Sentinel Study-NEJM

• Early Palliative Care for Patients with
  Metastatic Non-Small Cell Lung CA
• 151 patients
• Method
• Randomized, Prospective
• Standard Oncologic Care only
• Standard Oncologic Care with early integrated
  palliative care
• Baseline and 12 week assessments
• Decisions, quality of life

NEJM 2010363733-42
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Sentinel Study-NEJM

• Results
• 107 completed assessments
• Better Quality of Life (98.0 vs 91.5 P0.03)
• FACT-L scale range 0-136
• Less Depression (16 vs. 38 P0.01)
• Less Aggressive End of Life Care (33 vs. 54
  P0.05)
• Longer Median Survival (11.6 vs. 8.9 mos P0.02)

NEJM 2010363733-42
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Unique aspects inform discussions

• Causes of death in children
• Illness trajectories and prognoses

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Causes of death in children
Placental Cord
Membranes
Heart Disease
2
2
Congenital Anomalies
Unintentional Injuries
12
22
Complications of
Pregnancy
2
Short Gestation
8
Homicide Suicide
8
SIDS
5
Respiratory Distress
2
Cancer
4
Other
IOM report 2003
33
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Unique aspects inform decisions

• Causes of death in children
• Illness trajectories and prognoses

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Illness Trajectories and Prognoses

• Variation in cause of death and prognosis
• Four basic trajectories exist
• Infants and Children
• Timeline differs

IOM Committee on Palliative and End-of-Life care
for Children and their families, 2003
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Illness Trajectories and Prognoses
Sudden Death from Unexpected Cause
Health Status
SIDS Unintentional injury Homicide
Death
Time
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Illness Trajectories and Prognoses
Illness with risk for life-threatening event
Health Status
Seizure disorder Neuromuscular disorders
Sudden Death
Time
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Illness Trajectories and Prognoses
Decline from Progressive Disease
Brainstem Glioma Mucopolysaccharidosis
Health Status
Decline
Terminal phase
Death
Time
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Illness Trajectories and Prognoses
Advanced Illness and Slow Decline with Periodic
Crises
Multiply relapsed cancer Cystic Fibrosis Advanced
HIV
Health Status
Decline
Crises
Sudden Death
Time
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Family and Patient-centered
Dear Me! What a troublesome business a
family is! -The Water-Babies, Charles
Kingsley, 1863
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Family and Patient-centered
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Family and Patient-centered

• Leukemia patient and laying on of hands
• Home nasogastric feedings
• Continuous nasogastric feedings
• Pain medication for seizure patient
• Home extubation

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Parental Decision-making

• Understanding of Prognosis Among Parents of
  Children Who Died of Cancer
• Objective
• Assess association of parents understanding of
  prognosis with treatment decisions
• Design
• Retrospective survey
• Setting
• University-affiliated childrens hospital
• Participants
• 103 parents of children and 42 pediatric
  oncologists

JAMA. 2000 Nov 15284(19)2469-75.
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Parental Decision-making
Understanding That Child Had No Realistic Chance
for Cure
Diagnosis
Death
Duration of disease - 32.4 months
Physician - 6.9 months
Parent - 3.5 months
JAMA. 2000 Nov 15284(19)2469-75.
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Parental Decision-making

• Understanding of Prognosis Among Parents of
  Children Who Died of Cancer
• Results
• Earlier recognition of prognosis
• Earlier hospice discussion
• Better quality of home care
• Earlier DNR
• Less cancer directed therapy in last month
• Higher likelihood of goal to diminish suffering

JAMA. 2000 Nov 15284(19)2469-75.
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Parental Decision-making

• Study cont.
• Conclusion
• Delay in parents recognition of prognosis
• Earlier recognition emphasizes decreased
  suffering
• Earlier recognition leads to integration of
  palliative care

JAMA. 2000 Nov 15284(19)2469-75.
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POST-Pediatrics
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Practical Approaches

• Develop relationship
• Discard personal or medical team agenda
• Tell me what you have heard?
• Tell me what questions you have?
• What worries you most right now?
• Family-centered and patient-centered
• Always acknowledge child
• Engage in discussion of what the child likes,
  brings joy, childs meaning in the family
• Communication
• Always sit

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Potential Pitfalls

• Communication
• Unacknowledged prognostic uncertainty
• Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
• Childs experience
• Childs preference

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Potential Pitfalls

• Communication
• Unacknowledged prognostic uncertainty
• Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
• Childs experience
• Childs preference

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Communication The Power of Words
http//www.inmycommunity.com
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Communication The Power of Words
The Great Mokusatsu Mistake Was This the
Deadliest Error of Our Time? William J. Coughlin
March 1953, p. 31-40
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Communication Training
How did you learn to care for dying children?
Trial and error From colleagues in clinical
practice From role models during residency and
fellowship Formal courses
92 82 65 10
Reported by physicians to be most useful
Hilden et al JCO 2001
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Communication Training
Little or no structured training in resuscitation
discussions
During medical or nursing school During
postgraduate training or orientation After
completion of training
83 44 51
Sanderson et al JamaPeds 2013
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Communication Lose that Lexicon!

• Get
• Ethical
• Excuse
• Do everything
• Nothing more to do
• Withdrawal of care
• I understand
• Causing suffering

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Listening
I assure you that you can pick up more
information when you are listening than when you
are talking. -The Trumpet of the Swan, E.B.
White, 1970
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Potential Pitfalls

• Communication
• Unacknowledged prognostic uncertainty
• Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
• Childs experience
• Childs preference

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Prognostic Uncertainty
Advanced Illness and Slow Decline with Periodic
Crises
Multiply relapsed cancer Cystic Fibrosis Advanced
HIV
Health Status
Decline
Crises
Sudden Death
Time
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Prognostic Uncertainty and Happys

• We are not in charge.
• 3 year old and motor vehicle accident
• 10 year old and near-drowning episode
• 17 year old with cerebral palsy and severe
  developmental delay and Holidays

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Potential Pitfalls

• Communication
• Unacknowledged prognostic uncertainty
• Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
• Childs experience
• Childs preference

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POST and Hospital DNR Orders

• POST vs. Inpatient DNR order
• Documented discussion
• Computer order entry
• Parent signature

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Potential Pitfalls

• Communication
• Unacknowledged prognostic uncertainty
• Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
• Childs experience
• Childs preference

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Unrecognized Consequences

• Clinician survey on implications of DNR
• Boston Childrens Hospital and DFCI
• Units
• Medical/Surgical ICU
• Medicine ICU
• Cardiac ICU
• Staff
• 107 physicians
• 159 nurses

JAMA-Peds. 2013 Oct167(10)954-8.
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Unrecognized Consequences

• When a child has a DRN order in place, what does
  this mean to you?
• In your experience, how much does the care of a
  patient change once a DNR order is written?
• In what way does care change?

JAMA-Peds. 2013 Oct167(10)954-8.
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Unrecognized Consequences

• Meaning of DNR
• Limitation of resuscitation only 66.9
• Limitation of other treatments 33.1
• Comfort measures only 6.2

JAMA-Peds. 2013 Oct167(10)954-8.
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Unrecognized Consequences

• Implication of DNR order
• Care changes 66.9
• Physicians gt Nurses P.004
• Increased attention to comfort 36.7
• Limitation or withdrawal of treatment 52.1

JAMA-Peds. 2013 Oct167(10)954-8.
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Barriers to DNR Discussions

• Top three identified barriers
• Unrealistic parent expectations 39.1
• Lack of parent readiness 38.8
• Prognosis understanding disparity 30.4

JAMA-Peds. 2013 Oct167(10)954-8.
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Barriers to DNR Discussions

• Never or rarely barriers
• Lack of importance to clinicians
• Laws and regulations
• Concern for decreased attention
• Lack of clinician time
• Ethical considerations
• Conflict between patient and parent
• Clinician concern regarding losing trust

JAMA-Peds. 2013 Oct167(10)954-8.
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POST-Place of Death

• Shifting Place of Death Among Children with
  Complex Chronic Conditions in the US, 1989-2003
• Objective
• Determine trend in home deaths
• Race and ethnicity disparities in location of
  death
• Design
• Retrospective national case series
• Setting
• National Center for Health Statistics Multiple
  Cause of Death Files

JAMA. 2007 Jun 27297(24)2725-32.
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POST-Place of Death

• Study cont.
• Participants
• Deceased less than 19 years of age
• Outcome Measure
• Place of death
• Results
• Death at home
• lt 1 year (4.9 to 7.3)
• 1-9 years (17.9 to 37)
• 10-19 years (18.4 to 32.2)

JAMA. 2007 Jun 27297(24)2725-32.
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POST-Place of Death

• Study cont.
• Results cont.
• Death at home by ethnicity
• Black (OR 0.50)
• Hispanic (OR 0.52)
• Conclusions
• Children with complex, chronic medical conditions
  are increasingly dying at home
• Racial and ethnic disparities exist
• Opportunities for improvement exist

JAMA. 2007 Jun 27297(24)2725-32.
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Poignant Moments
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Poignant Moments
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Poignant Moments
It is sometimes the mystery of death that
brings us to a consciousness of the still greater
mystery of life. -Rebecca of Sunnybrook
Farm, Kate Douglas Wiggin, 1903
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Bereavement care

• An essential component of pediatric palliative
  care
• Most effective when provided by a team who has
  known the child and family
• Aids family in transition through grief process

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Bereavement Care
Tears may be the beginning, but they should
not be the end of things. The Goldfish,
The Little Bookroom, Eleanor Farjeon, 1956
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