Pediatric POST:
Practical Approaches, Potential Pitfalls
and Poignant Moments
Melody J. Cunningham, MD
Director, Pediatric Palliative Care
Le Bonheur Children’s Hospital
January 14, 2014
Disclosures
• No financial disclosures
• No off-label uses of medications
Pediatric Palliative Care and POST
“Helping children live as well as
possible for as long as possible.”
Practical Approaches
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American Academy of Pediatrics guidance
Sentinel study
Disease trajectory and prognosis
Relationship
– Family-centered
– Communication
• Approach without relationship
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
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.”
Sentinel Study-NEJM
Early Palliative Care for Patients with
Metastatic Non-Small Cell Lung CA
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151 patients
Method
• Randomized, Prospective
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•
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Standard Oncologic Care only
Standard Oncologic Care with early
integrated palliative care
Baseline and 12 week assessments
•
Decisions, quality of life
NEJM 2010;363:733-42
Sentinel Study-NEJM
•
Results:
• 107 completed assessments
•
Better Quality of Life (98.0 vs 91.5; P=0.03)
• FACT-L scale range 0-136
• Less Depression (16% vs. 38%; P=0.01)
• Less Aggressive End of Life Care (33% vs. 54%;
P=0.05)
• Longer Median Survival (11.6 vs. 8.9 mos;
P=0.02)
NEJM 2010;363:733-42
Unique aspects inform discussions
• Causes of death in children
• Illness trajectories and prognoses
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
SIDS
8%
5%
Respiratory Distress
2%
Cancer
4%
Other
33%
IOM report 2003
Unique aspects inform decisions
• Causes of death in children
• Illness trajectories and prognoses
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
Illness Trajectories and Prognoses
Health Status
Sudden Death from Unexpected Cause
SIDS
Unintentional injury
Homicide
Death
Time
Illness Trajectories and Prognoses
Health Status
Illness with risk for life-threatening event
Seizure disorder
Neuromuscular disorders
Sudden Death
Time
Illness Trajectories and Prognoses
Health Status
Decline from Progressive Disease
Brainstem Glioma
Mucopolysaccharidosis
Decline
Death
Time
Illness Trajectories and Prognoses
Health Status
Advanced Illness and Slow Decline with
Periodic Crises
Multiply relapsed cancer
Cystic Fibrosis
Advanced HIV
Decline
Crises
Time
“Sudden” Death
Family and Patient-centered
“Dear Me! What a troublesome
business a family is!”
-The Water-Babies, Charles Kingsley, 1863
Family and Patient-centered
Family and Patient-centered
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Leukemia patient and laying on of hands
Home nasogastric feedings
Continuous nasogastric feedings
Pain medication for seizure patient
Home extubation
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 children’s hospital
– Participants
• 103 parents of children and 42 pediatric oncologists
JAMA. 2000 Nov 15;284(19):2469-75.
Parental Decision-making
Understanding That Child Had No Realistic Chance for Cure
Duration of disease - 32.4 months
Physician - 6.9 months
Parent - 3.5 months
JAMA. 2000 Nov 15;284(19):2469-75.
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 15;284(19):2469-75.
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 15;284(19):2469-75.
POST-Pediatrics
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, child’s meaning in the family
– Communication
• Always sit
Potential Pitfalls
• Communication
• Unacknowledged prognostic uncertainty
– Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
– Child’s experience
– Child’s preference
Potential Pitfalls
• Communication
• Unacknowledged prognostic uncertainty
– Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
– Child’s experience
– Child’s preference
Communication: The Power of Words
http://www.inmycommunity.com
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
Communication Training
How did you learn to care for dying children?
*Trial and error
92%
From colleagues in clinical practice
82%
From role models during residency and
fellowship
65%
Formal courses
10%
* Reported by physicians to be most useful
Hilden et al JCO 2001
Communication Training
Little or no structured training in resuscitation discussions
During medical or nursing school
83%
During postgraduate training or orientation
44%
After completion of training
51%
Sanderson et al JamaPeds 2013
Communication: Lose that Lexicon!
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“Get”
“Ethical”
“Excuse”
“Do everything”
“Nothing more to do”
“Withdrawal of care”
“I understand…”
“Causing suffering”
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
Potential Pitfalls
• Communication
• Unacknowledged prognostic uncertainty
– Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
– Child’s experience
– Child’s preference
Prognostic Uncertainty
Health Status
Advanced Illness and Slow Decline with
Periodic Crises
Multiply relapsed cancer
Cystic Fibrosis
Advanced HIV
Decline
Crises
Time
“Sudden” Death
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
Potential Pitfalls
• Communication
• Unacknowledged prognostic uncertainty
– Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
– Child’s experience
– Child’s preference
POST and Hospital DNR Orders
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POST vs. Inpatient DNR order
Documented discussion
Computer order entry
Parent signature
Potential Pitfalls
• Communication
• Unacknowledged prognostic uncertainty
– Dogmatic predictions
• POST and hospital DNR
• Unrecognized consequences
• Parental guilt
– Child’s experience
– Child’s preference
Unrecognized Consequences
• Clinician survey on implications of DNR
– Boston Children’s Hospital and DFCI
– Units
• Medical/Surgical ICU
• Medicine ICU
• Cardiac ICU
– Staff
• 107 physicians
• 159 nurses
JAMA-Peds. 2013 Oct;167(10):954-8.
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 Oct;167(10):954-8.
Unrecognized Consequences
• Meaning of DNR
– Limitation of resuscitation only
– Limitation of other treatments
– Comfort measures only
66.9%
33.1%
6.2%
JAMA-Peds. 2013 Oct;167(10):954-8.
Unrecognized Consequences
• Implication of DNR order
– Care changes
66.9%
• Physicians > Nurses
• Increased attention to comfort
• Limitation or withdrawal of treatment
P=.004
36.7%
52.1%
JAMA-Peds. 2013 Oct;167(10):954-8.
Barriers to DNR Discussions
• Top three identified barriers
– Unrealistic parent expectations
– Lack of parent readiness
– Prognosis understanding disparity
39.1%
38.8%
30.4%
JAMA-Peds. 2013 Oct;167(10):954-8.
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 Oct;167(10):954-8.
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 27;297(24):2725-32.
POST-Place of Death
• Study cont.
– Participants
• Deceased less than 19 years of age
– Outcome Measure
• Place of death
– Results
• Death at home
– < 1 year
– 1-9 years
– 10-19 years
(4.9% to 7.3%)
(17.9% to 37%)
(18.4% to 32.2%)
JAMA. 2007 Jun 27;297(24):2725-32.
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 27;297(24):2725-32.
Poignant Moments
Poignant Moments
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
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
Bereavement Care
“Tears may be the beginning, but they
should not be the end of things.”
“The Goldfish,” The Little Bookroom,
Eleanor Farjeon, 1956