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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.

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pediatric post practical approaches potential pitfalls and poignant moments

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
Disclosures
  • No financial disclosures
  • No off-label uses of medications
pediatric palliative care and post
Pediatric Palliative Care and POST

“Helping children live as well as possible for as long as possible.”

practical approaches
Practical Approaches
  • American Academy of Pediatrics guidance
  • Sentinel study
  • Disease trajectory and prognosis
  • Relationship
    • Family-centered
    • Communication
  • Approach without relationship
aap policy statement
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 statement1
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
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 nejm1
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
Unique aspects inform discussions
  • Causes of death in children
  • Illness trajectories and prognoses
causes of death in children
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

IOM report 2003

33%

unique aspects inform decisions
Unique aspects inform decisions
  • Causes of death in children
  • Illness trajectories and prognoses
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 prognoses1
Illness Trajectories and Prognoses

Sudden Death from Unexpected Cause

Health Status

SIDS

Unintentional injury

Homicide

Death

Time

illness trajectories and prognoses2
Illness Trajectories and Prognoses

Illness with risk for life-threatening event

Health Status

Seizure disorder

Neuromuscular disorders

Sudden Death

Time

illness trajectories and prognoses3
Illness Trajectories and Prognoses

Decline from Progressive Disease

BrainstemGlioma

Mucopolysaccharidosis

Health Status

Decline

Terminal phase

Death

Time

illness trajectories and prognoses4
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

family and patient centered
Family and Patient-centered
  • “Dear Me! What a troublesome business a family is!”
    • -The Water-Babies, Charles Kingsley, 1863
family and patient centered2
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
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 making1
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 15;284(19):2469-75.

parental decision making2
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 making3
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.

practical approaches1
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
Potential Pitfalls
  • Communication
  • Unacknowledged prognostic uncertainty
    • Dogmatic predictions
  • POST and hospital DNR
  • Unrecognized consequences
  • Parental guilt
    • Child’s experience
    • Child’s preference
potential pitfalls1
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
Communication: The Power of Words

http://www.inmycommunity.com

communication the power of words1
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
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

communication training1
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

communication lose that lexicon
Communication: Lose that Lexicon!

“Get”

“Ethical”

“Excuse”

“Do everything”

“Nothing more to do”

“Withdrawal of care”

“I understand…”

“Causing suffering”

listening
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 pitfalls2
Potential Pitfalls
  • Communication
  • Unacknowledged prognostic uncertainty
    • Dogmatic predictions
  • POST and hospital DNR
  • Unrecognized consequences
  • Parental guilt
    • Child’s experience
    • Child’s preference
prognostic uncertainty
Prognostic Uncertainty

Advanced Illness and Slow Decline with Periodic Crises

Multiply relapsed cancer

Cystic Fibrosis

Advanced HIV

Health Status

Decline

Crises

“Sudden” Death

Time

prognostic uncertainty and happys
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 pitfalls3
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 and Hospital DNR Orders

POST vs. Inpatient DNR order

Documented discussion

Computer order entry

Parent signature

potential pitfalls4
Potential Pitfalls
  • Communication
  • Unacknowledged prognostic uncertainty
    • Dogmatic predictions
  • POST and hospital DNR
  • Unrecognized consequences
  • Parental guilt
    • Child’s experience
    • Child’s preference
unrecognized consequences
Unrecognized Consequences

JAMA-Peds. 2013 Oct;167(10):954-8.

  • 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
unrecognized consequences1
Unrecognized Consequences

JAMA-Peds. 2013 Oct;167(10):954-8.

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?

unrecognized consequences2
Unrecognized Consequences

JAMA-Peds. 2013 Oct;167(10):954-8.

  • Meaning of DNR
    • Limitation of resuscitation only 66.9%
    • Limitation of other treatments 33.1%
    • Comfort measures only 6.2%
unrecognized consequences3
Unrecognized Consequences

JAMA-Peds. 2013 Oct;167(10):954-8.

  • 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%
barriers to dnr discussions
Barriers to DNR Discussions

JAMA-Peds. 2013 Oct;167(10):954-8.

  • Top three identified barriers
    • Unrealistic parent expectations 39.1%
    • Lack of parent readiness 38.8%
    • Prognosis understanding disparity 30.4%
barriers to dnr discussions1
Barriers to DNR Discussions

JAMA-Peds. 2013 Oct;167(10):954-8.

  • 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
post place of death
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 death1
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 death2
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 moments2
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
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 care1
Bereavement Care
  • “Tears may be the beginning, but they should not be the end of things.”
    • “The Goldfish,” The Little Bookroom,
    • Eleanor Farjeon, 1956