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Palliative Care for Pediatric Hospitalists

Palliative Care for Pediatric Hospitalists. Ken Pituch, MD Pediatric Palliative Care Programs CS Mott Children’s Hospital University of Michigan. Objectives. List the types of patients encountered by pediatric hospitalists who may benefit from a palliative care approach.

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Palliative Care for Pediatric Hospitalists

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  1. Palliative Care for Pediatric Hospitalists Ken Pituch, MD Pediatric Palliative Care Programs CS Mott Children’s Hospital University of Michigan

  2. Objectives • List the types of patients encountered by pediatric hospitalists who may benefit from a palliative care approach. • Incorporate a ‘quality of life’ approach into your conversations with parents of children with life-limiting conditions..

  3. Disclosure • I work for a large academic medical center that profits from fee-for-service re-imbursement. Our hospitalist and palliative care services are subsidized by the money collected for providing aggressive life prolonging care.

  4. Technologic Achievements in Pediatric Care • Gastrostomy Tubes • Head and neck anomalies • Burns • Often temporary

  5. Technologic Achievements in Pediatric Care • Tracheostomy • Obstuctive upper airway tumors • Broncho-pulmonary dysplasia • Tracheo-malacia

  6. Technologic Achievements in Pediatric Care • Broviac catheter • Chemotherapy • Nutritional support • Short gut

  7. Technologic Achievements in Pediatric Care • VP Shunt • Obstructive hydrocephalus • Brain tumors • Post-trauma

  8. Most children who need technology need much more.

  9. Family support and home care have grown.

  10. Success stories are not hard to find

  11. Case 1: Carla • Severe birth asphyxia, 1985. Apgars 0, 0, 1 • 9 week NICU stay. Grade 3 IVH. Hydrocephalus • No advance in milestones • 19 VP shunt revisions by age 7 years • Feeding gastrostomy tube, age 3 months • Spastic CP, severe developmental delay • Reflux, constipation, feeding intolerance. • 4 GI surgeries age 3 months to 6 years. • 2 months of broviac nutritional support 1990 • 6 surgeries for tendon releases, scoliosis • 26 pneumonia admissions 1987 – 2004 • Tracheostomy at age 10 years • Night time vent support age 15 years • Full-time ventilator support age 17

  12. Carla • Developmental age in 2004: Age 2 months • Parents divorced 1991 • Family history denotes “Maternal depression” • No record of discussions of . . . • Advanced care plan • Surgical options • Palliative care options

  13. PEDIATRIC TRACHEOSTOMIES: EPIDEMIOLOGY AND DISPOSITION McPherson, Mona L. Et al, Texas Children’s Hospital, 70 consecutively trached children: history of prematurity 20% prolonged mechanical ventilation (67%) elective (24%) emergent (9%) All patients had multiple diagnoses poor airway/secretion control (37%) airway obstruction (25%) chronic lung disease (23%) central nervous system and neuromuscular disease (15%) Pediatric Critical Care Medicine Volume 5(5)             September 2004   

  14. PEDIATRIC TRACHEOSTOMIES: All patients survived to hospital discharge 84% went home vs. other medical facilities. At discharge, 61% of patients required positive pressure ventilation, 56% of patients had a gastrostomy tube 11% had a central venous line. Half of the patients were readmitted within 3 months 63% required readmission within 6 months. Ten patients (15%) died after discharge Only one patient had orders to limit resuscitation. No death related to a tracheostomy complication Pediatric Critical Care Medicine Volume 5(5)             September 2004   

  15. Case 2: Evie • 3 year old girl with hydrancephaly. • Feeds orally but takes hours. • Flat growth chart for last year • Frequent visits to ED and hospital for ‘low body temperatures. • No ICU admissions. • “Full code assumed, not addressed” • Admitted tonight with “Low temp, r/o sepsis and FTT: needs tube feeding” • Got CBC, blood and urine in the ED. Mom refused LP. • Arrives on ward with IV fluids, vanc and ceftriazone.

  16. Evie • FH/SH: Lives with devoted grandparents; 19 y.o mom ‘abandoned her’. • Exam: T 35.1 R, P 100, BP 80/40, RR 20. • Pink, no distress. • Microcephaly, proportional weight and height <3rd centiles • Non-focal exam, moderate spasticity and limb contractures.

  17. Evie, on admission • Nurse asks: “What is her code status?” • How would you approach this question with the grandmother? Write the initial question or phrase you would use to initiate this conversation.

  18. Code Status Discussions Between Attending Hospitalist Physicians and Medical Patients at Hospital Admission WG Anderson, R Chase, SZ Pantilat, JA Tulsky, AD Aurbach Journal of General Internal Medicine April 2011, Volume 26, Issue 4, pp 359-366 80 patients’ admission encounters with 27 physicians were obtained. Eleven physicians discussed code status in 19 encounters.

  19. Evie, continued • Grandma ‘freaked out’ at the initiation of code status discussion: “I never want to see that doctor again!” • By the afternoon of day 1 in the hospital, temp in now 36.5, vitals normal, and Evie is able to eat. She takes soft foods from a spoon and can drink 2 ounces from a sippy cup. • Next issue: Should tube feedings be initiated?

  20. How would you approach this issue?

  21. Benefits Burdens

  22. Hospital Utilization and Characteristics of Patients Experiencing Recurrent Readmissions Within Children’s Hospital Jay G. Berry, MD, MPH, David E. Hall, MD, and John Neff, MD Vol 305(7) 682 -690

  23. “Among a group of pediatric hospitals, 18.8% of admissions and 23.2% of inpatient charges were accounted for by the 2.9% of patients with frequent recurrent admissions. Many of these patients were rehospitalized recurrently for a problem in the same organ system.”

  24. Pediatrics, 2011

  25. Feudtner et al, Pediatrics 2011

  26. Feudtner et al, Pediatrics 2011

  27. Feudtner et al, Pediatrics 2011

  28. C. Feudtner et al and the Pediatric Palliative Care Research Network, Pediattrics Sept, 2011

  29. Reasons for referral

  30. Palliative care 101 • The importance of rapport / family narratives • It takes at least 45 minutes to set the groundwork for important conversations (often twice as long).

  31. Trigger Questions: Should I pull out the card? • Would I/we be surprised if this child had less than a year to live? • If life expectancy less than normal? • Is there Distrust or Conflict?

  32. Methods to help establish trust • What do you like to be called? • I’d like to be an advocate for your child. • You are the expert in your child. You know _____best. • I value your opinion. • I cannot possibly understand all that you are going thru….. • What can I/we do to help? • What do you know about palliative care?

  33. ‘Understanding of the illness’ • What is your understanding of ________’s condition? • What have the doctors told you would likely happen? • What are you most afraid of? • What do you hope for? • When in the past have you ever been afraid that ______ might die? • What have been the big ‘bumps’ along the way? • What’s the hardest thing(s) you’ve had to deal with? • What are your goals / hopes? • What is getting in the way of achieving them?

  34. ‘Present Quality of Life: good days • How does _______ let you know he/she is happy/comfortable? • How does _______ let you know he/she is uncomfortable/in pain? • What is the balance between good days and bad days? • What is a good day like? • What is a bad day like? • What can help on a bad day? • What have you tried so far that doesn’t work? • When is the last time that _____ had a good day? • How much of a day is dedicated to treatments? • How much to play or ‘normal life’?

  35. ‘Present Quality of Life: challenges’ • What is a hard day like for you (the caregiver)? • What changes could make either of your days better? • What (if any) activities can ________ do independently? with help? • How does ________ communicate with you? With others? • What problems does ________have with eating/tolerating feedings? • What happens? • How about sleeping? • What problems with bowel movements? • How can you get your child to smile? • How is that changing?

  36. Eliciting family strengths • How is ______’s condition affecting her brothers/sisters/father…etc? • Who helps you? • Who close to you has had a serious, life-threatening or fatal illness? • What happened with them? • Where, how did they die? • Has anyone in your family been involved with hospice? • What gives you strength? • Do you have a spiritual life that is important to you? • What do I need to know about your religion/spirituality? • Who is the ‘rock’/ “anchor’ in your family? • What does that mean for you/ your family? • From what sources do you draw strength to cope with this illness?

  37. Eliciting potential barriers • What are other stresses going on at home? • Who in the family has another medical problem? • Who in the family has a different point of view on ________’s condition? • What is stopping your family from doing what it wants to do? • Who in the family has had problems with stress? With their nerves? • Who in the family has had depression or other mental health problems? • Who in the family has had problems with alcohol or drug abuse? • What else haven’t I thought to ask you?

  38. Thanks to • Pediatric Palliative Care Team, CS Mott Children’s Hospital • Nurses: C. Trudeau, M. Giacomazza, B. Hollenkamp • Docs: J. Azim, T. Murphy, A. Marks, D. Saul, P. Keefer, R. Ayyangar, M. Niener • Social worker: K. Lehmann • Spiritual Care: R. Brownson • Role models and Gurus: C. Feudtner, J. Wolfe, H. Siden, S. Liben, P. Warner • Hundreds of patients and families

  39. Outcome evaluation

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