1. 1. Laura Miller-Smith, MD Pediatric Critical Care Medicine Childrens Mercy Clinics and Hospital
2. 2. NO DISCLOSURES
3. 3. To review the medical indications for tracheotomy (with or without home ventilation) in pediatric patients To understand the risk factors associated with tracheotomy, requiring optimization of the integrated care between families and medical providers To discuss the social and ethical barriers that impact a families ability to support technology dependent children at home To suggest strategies to overcome these barriers to improve patient outcomes
4. 4. Definition: a surgical procedure to create an opening through the neck into the trachea. A tube is advanced through this opening to provide a stable airway, which may be needed for assisted ventilation and/or airway clearance Comes from the latin, trachea, and tome (to cut) or stoma (an opening, mouth)
5. 5. Descriptions found on ancient Egyptian clay tablets, dating back to 3600 BC Guidelines for the procedure were described in Rig Veda - the holy scriptures of Hindi medicine, about 2000 BC Hippocrates describes the procedure around 400 BC Asclepiads (124-156 BC), a Greek physician practicing in Rome, is commonly considered the father of pharyngotomy, documented a procedure in the 1st century Procedures performed by Claudius Galenus of Pergamon (about 130-200 AD) who was treating gladiators Tracheotomy was well described in Indian and Arabian literature by 700 AD J Olszewski, Otolaryngol Pol. 2007;61(3):349-52.
6. 6. Between1500 to 1832 there are only 28 known reports of tracheotomy, with the first documentation of survival in1546 In 1852, French internist Armand Trousseau reported a series of 169 tracheotomies (mostly infectious) In the early 1900s, tracheotomy considered by some for treatment of Polio Mostly used in adults, as risk in children was deemed to high
7. 7. TRACHEOTOMY IN INFANCY JOHN A. BIGLER et al Pediatrics 1954;13;476
8. 8. Formerly, the main indication was acute airway inflammation/infection Presumed that underlying pathology would resolve, and decannulation would be early Currently, most commonly performed for prolonged intubation Underlying pathology is chronic in nature
9. 9. Upper Airway Obstruction (subglottic stenosis, tracheomalacia, tracheal stenosis, etc.) Craniofacial Syndromes (Pierre Robin, Treacher-Collins, Beckwith-Wiedemann, etc) Facial/Airway Trauma Airway Tumors Lung disease (bronchopulmonary dysplasia, ARDS, restrictive lung disesase from scoliosis, etc.) Neurologic Disorders (TBI, muscular dystrophies, cerebral palsy, anoxic brain injury, spinal cord injury) Cardiac ( heart failure, operative diaphragm or vocal cord injury, lung injury, pulmonary hypertension, etc.)
10. 10. Increasing data being published on hospital experience with tracheotomy Rate of the procedure is increasing rapidly At Childrens Mercy hospital, we are performing > 50 per year
11. 11. Complications from Alberta Childrens Hospital over 17 years of experience: 90% incidence of infection 56% incidence of tracheal granulation 10% incidence of mucous plugging resulting in cardiopulmonary arrest 10% risk of accidental decannulation Al-Samri M, et al. Pediatric Pulmonol, 2010
12. 12. All children at CHLA who received tracheostomy with home mechanical ventilation between 1977-2009 388 patients identified, with 142 excluded due to insufficient information/loss to follow-up 140 (61%) remain on home MV with 18% liberated, and the remained deceased Edwards JD, et al. J Pediatr 2010; 157
13. 13. Cause of death Progression of underlying condition (34%) Cardiac death (21%) Acute Respiratory Failure (8.5%) Brain Death (8.5%) Infection/Sepsis (8.5%) Tracheal bleeding (8.5%) Tracheal obstruction (8.5%) Tracheostomy accident (2%) Edwards JD, et al. J Pediatr 2010; 157
14. 14. Needle JS, et al. Crit Care Med 2012
15. 15. Needle JS, et al Crit Care Med 2012
16. 16. Needle JS, et al. Crit Care Med 2012; 40
17. 17. It may not be consistent with what we would want for ourselves, so at least feels in conflict with best interest standard or reasonable person standard Are the parents truly informed? What is the patients and families QOL?
18. 18. Doc: We have tried, but for (fill in the blank) reason, we will not be able to extubate Johnny. Johnnys Parents: What do we do next? Doc: Johnny will need long term ventilator support, and the next step is getting a surgical airway, or tracheostomy. Johnnys Parents: We will do whatever we need to do. (which may be a little over-simplified for effect)
19. 19. Informed Consent frequently revolves around the immediate procedure and potential complications, but not the long term sequelae Why? The rate of tracheostomy in pediatrics may be increasing faster than we can collect and disseminate the data
20. 20. What Do We Know?
21. 21. Kids Inpatient Database queried for LTMV (Long Term Mechanical Ventilation) discharges using ICD-9 code v46.1x In 2006, 7812 discharges associated with LTMV (0.17% of all discharges) The number was up 55% from 2000 Benneyworth BD et al. Pediatrics 2011; 127 (6)
22. 22. These hospitalizations associated with: higher mortality longer length of stay higher mean charges more ED visits more discharges to chronic care facilities 83% increase since 2000 in hospitalizations charged to Medicaid/Medicare 105% increase in total charges
23. 23. Staff Recruitment Home health services Nursing availability Funding Frequently requires applying for Medicaid, Social Security Disability, CHIP, WIC, etc. Graf JM et al. Pediatric Pulmonology 2008; 43 Edwards EA et al. Arch Dis Child. 2004; 89
24. 24. Housing Change of housing Getting electricity Phone service Cleanliness Family Issues Who will provide care Is medical foster care needed
25. 25. Delays in appropriate parent education Lack of transportation Lack of childcare Language barriers Missed class appointments Anxiety/fear Graf JM et al. Pediatric Pulmonology 2008; 43 Edwards EA et al. Arch Dis Child. 2004; 89
26. 26. Hopkins C et al. Int J of Pediatr Otolaryngol 2009
27. 27. Parents of infants/toddlers with tracheostomy state they have moderate distress with decreased QOL Joseph RA, et al. Neonatal Network 2014; 33 (2)
28. 28. Parents of children with tracheostomy rate their children as having low functional status Rane S et al. J Pediatr 2013; 163 Parents of children with tracheostomy rate their childs QOL as better than their own. Hopkins C et al. Int J of Pediatr Otolaryngol 2009
29. 29. Carnevale et al. Pediatrics 2006
30. 30. Child worried about being a burden Sibling rivalry Strain on marriage Living in isolation Resource utilization Devaluing of their childs life Physical and long term dependence Continual presence of death Financial stability Normalizing the home/lifestyle Carnevale et al.Pediatrics 2006
31. 31. Ethical concerns regarding trach: Best interest Informed Consent Parental authority Resource utilization How informed is the health care team about long term outcomes? Good and bad? Inconsistent process for making decisions affects our ability to address above issues
32. 32. Carnevale et al. Pediatrics 2006
33. 33. In order to ensure the best possible outcome, we must first understand basic demographics about who is receiving this procedure, understand their long term outcome, and appreciate their medical, social and ethical complications that may accompany this medical treatment.
34. 34. Conduct a retrospective chart review of all patients undergoing tracheostomy at Childrens Mercy Hospital Any patient who has undergone tracheostomy between January 1st, 2010 and December 31st, 2014 are included Inclusion Criteria Any patient having undergone tracheostomy aged 0 days to 18 years All genders and race/ethnicity All patients seen between January 2010 and September 2014 Exclusion Criteria Patients > 18 years
35. 35. Demographic Data: primary diagnosis, gender, race/ethnicity, primary language, age at time of tracheostomy, age at time of study/follow-up, insurance, home county/state, level of parental education, parent marital status, parent employment Medical outcome: Alive with tracheostomy and home ventilation, alive with tracheostomy without home ventilation, alive and decannulated, deceased and cause of death; location/service of outpatient follow-up; compliance with clinic follow- up
36. 36. Timing and Readmissions: time between admission to decision to perform tracheostomy, time from decision to perform tracheostomy to tracheostomy, time from tracheostomy to discharge, primary obstacle to discharge, number of re-admissions < 30 days from discharge, number of re-admissions < 1 year from discharge
37. 37. Consultations: otolaryngology, home vent team, pulmonary, ethics and palliative care, and timing between consult and placement of tracheostomy Location of discharge: home with parents, medical foster care, another healthcare facility Parent Education: obstacles to training, number of tracheostomy changes prior to discharge, length of parent stay (PCU) prior to discharge
38. 38. Conducted at follow-up clinic visits or via telephone Perception of informed consent/education Perceived barriers Perception on patient/family QOL Home health nursing availability/skill/support Impact on relationships Impact on finances/job Insurance issues/complications Would you have done something differently?
39. 39. Childrens Mercy Hospital has joined a collaborative on tracheostomy: The Global Tracheostomy Collaborative Globaltrach.org
40. 40. Infant Home Ventilator Team Pulmonology Otolaryngology Beacon Clinic
41. 41. Pediatric Tracheotomy (with or without home ventilation) is increasing There are associated complications (medical, social and ethical) that should be recognized and addressed Standardization of practice may help us ensure we are doing the right thing and providing the needed resources for our families
42. 42. Questions/Suggestions/Feedback