pediatric post: practical approaches, potential pitfalls and poignant moments
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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. - PowerPoint PPT PresentationTRANSCRIPT
Pediatric POST:Practical Approaches, Potential Pitfalls
and Poignant Moments
Melody J. Cunningham, MDDirector, Pediatric Palliative CareLe 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
• 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•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 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
Unintentional Injuries22%
Homicide & Suicide8%
Other33%
Cancer4%
Respiratory Distress2%
SIDS5%
Short Gestation8%
Complications of Pregnancy
2%
Congenital Anomalies12%
Heart Disease2%
Placental Cord Membranes
2%
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
Time
Death
Hea
lth
Stat
us
Sudden Death from Unexpected Cause
SIDSUnintentional injury
Homicide
Illness Trajectories and Prognoses
Time
Sudden Death
Hea
lth
Stat
usIllness with risk for life-threatening event
Seizure disorderNeuromuscular disorders
Illness Trajectories and PrognosesH
ealth
St
atus
Time
Death
Decline
Decline from Progressive Disease
Brainstem GliomaMucopolysaccharidosis
Terminal phase
Illness Trajectories and PrognosesH
ealth
St
atus
Time
“Sudden” Death
Decline
Crises
Advanced Illness and Slow Decline with Periodic Crises
Multiply relapsed cancerCystic FibrosisAdvanced HIV
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
• 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
Diagnosis
Death
Physician - 6.9 monthsParent - 3.5 months
Understanding That Child Had No Realistic Chance for Cure
Duration of disease - 32.4 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
The Great Mokusatsu Mistake
Was This the Deadliest Error of Our Time?
William J. Coughlin
March 1953, p. 31-40
Communication: The Power of Words
Communication Training
*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
How did you learn to care for dying children?
Communication Training
During medical or nursing school
During postgraduate training or orientation
After completion of training
83%
44%
51%
Sanderson et al JamaPeds 2013
Little or no structured training in resuscitation discussions
Communication: Lose that Lexicon!
• “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 UncertaintyH
ealth
St
atus
Time
“Sudden” Death
Decline
Crises
Advanced Illness and Slow Decline with Periodic Crises
Multiply relapsed cancerCystic FibrosisAdvanced HIV
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
• 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 66.9%– Limitation of other treatments
33.1%– Comfort measures only
6.2%
JAMA-Peds. 2013 Oct;167(10):954-8.
Unrecognized Consequences
• Implication of DNR order– Care changes 66.9%
• Physicians > Nurses P=.004• Increased attention to comfort 36.7%• Limitation or withdrawal of treatment 52.1%
JAMA-Peds. 2013 Oct;167(10):954-8.
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 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 (4.9% to 7.3%)– 1-9 years (17.9% to 37%)– 10-19 years (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