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

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Pediatric POST: Practical Approaches, Potential Pitfalls and Poignant Moments

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  1. 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

  2. Disclosures • No financial disclosures • No off-label uses of medications

  3. Pediatric Palliative Care and POST “Helping children live as well as possible for as long as possible.”

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

  5. 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

  6. 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.”

  7. 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

  8. 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

  9. Unique aspects inform discussions • Causes of death in children • Illness trajectories and prognoses

  10. 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%

  11. Unique aspects inform decisions • Causes of death in children • Illness trajectories and prognoses

  12. 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

  13. Illness Trajectories and Prognoses Sudden Death from Unexpected Cause Health Status SIDS Unintentional injury Homicide Death Time

  14. Illness Trajectories and Prognoses Illness with risk for life-threatening event Health Status Seizure disorder Neuromuscular disorders Sudden Death Time

  15. Illness Trajectories and Prognoses Decline from Progressive Disease BrainstemGlioma Mucopolysaccharidosis Health Status Decline Terminal phase Death Time

  16. 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

  17. Family and Patient-centered • “Dear Me! What a troublesome business a family is!” • -The Water-Babies, Charles Kingsley, 1863

  18. Family and Patient-centered

  19. Family and Patient-centered • Leukemia patient and laying on of hands • Home nasogastric feedings • Continuous nasogastric feedings • Pain medication for seizure patient • Home extubation

  20. 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.

  21. 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.

  22. 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.

  23. 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.

  24. POST-Pediatrics

  25. 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

  26. Potential Pitfalls • Communication • Unacknowledged prognostic uncertainty • Dogmatic predictions • POST and hospital DNR • Unrecognized consequences • Parental guilt • Child’s experience • Child’s preference

  27. Potential Pitfalls • Communication • Unacknowledged prognostic uncertainty • Dogmatic predictions • POST and hospital DNR • Unrecognized consequences • Parental guilt • Child’s experience • Child’s preference

  28. Communication: The Power of Words http://www.inmycommunity.com

  29. 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

  30. 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

  31. 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

  32. Communication: Lose that Lexicon! “Get” “Ethical” “Excuse” “Do everything” “Nothing more to do” “Withdrawal of care” “I understand…” “Causing suffering”

  33. 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

  34. Potential Pitfalls • Communication • Unacknowledged prognostic uncertainty • Dogmatic predictions • POST and hospital DNR • Unrecognized consequences • Parental guilt • Child’s experience • Child’s preference

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

  36. 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

  37. Potential Pitfalls • Communication • Unacknowledged prognostic uncertainty • Dogmatic predictions • POST and hospital DNR • Unrecognized consequences • Parental guilt • Child’s experience • Child’s preference

  38. POST and Hospital DNR Orders POST vs. Inpatient DNR order Documented discussion Computer order entry Parent signature

  39. Potential Pitfalls • Communication • Unacknowledged prognostic uncertainty • Dogmatic predictions • POST and hospital DNR • Unrecognized consequences • Parental guilt • Child’s experience • Child’s preference

  40. 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

  41. 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?

  42. 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%

  43. 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%

  44. 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%

  45. 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

  46. 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.

  47. 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.

  48. 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.

  49. Poignant Moments

  50. Poignant Moments

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