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