This document summarizes a presentation on tracheostomies in pediatric patients. It discusses: 1) The objectives of reviewing medical indications for tracheostomies in pediatric patients and understanding associated risks and the need for integrated care between families and providers. 2) Background information on the history and definitions of tracheostomies. Complications from past studies including infections, granulation, and accidental decannulation are summarized. 3) Ethical considerations and barriers families face with technology-dependent children at home including informed consent, quality of life, resource utilization, and the burden on families are discussed.

1. Laura Miller-Smith, MD
Pediatric Critical Care Medicine
Children’s Mercy Clinics and
Hospital

2. NO DISCLOSURES

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.  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.  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.  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. TRACHEOTOMY IN INFANCY
JOHN A. BIGLER et al
Pediatrics 1954;13;476

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. • 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. Increasing data being published on
hospital experience with tracheotomy
Rate of the procedure is increasing rapidly
At Children’s Mercy hospital, we are
performing > 50 per year

13. Complications from Alberta Children’s
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

14. 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

15. 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

17. Needle JS, et al. Crit Care Med 2012

18. Needle JS, et al
Crit Care Med 2012

19. Needle JS, et al. Crit Care Med 2012; 40

20. 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 patient’s and families’ QOL?

21. Doc: We have tried, but for (fill in the
blank) reason, we will not be able to
extubate Johnny.
Johnny’s 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.
Johnny’s Parents: We will do whatever we
need to do.
(which may be a little over-simplified for effect)

22. 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

23. What Do We Know?

24.  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)

25.  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

27. 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

28. Housing
• Change of housing
• Getting electricity
• Phone service
• Cleanliness
Family Issues
• Who will provide care
• Is medical foster care needed

29. 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

30. Hopkins C et al. Int J of Pediatr Otolaryngol 2009

31. Parents of infants/toddlers with
tracheostomy state they have moderate
distress with decreased QOL
 Joseph RA, et al. Neonatal Network 2014; 33 (2)

32. 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 child’s QOL as better than their own.
 Hopkins C et al. Int J of Pediatr Otolaryngol 2009

34. Carnevale et al.
Pediatrics 2006

35. Child worried about being a burden
Sibling rivalry
Strain on marriage
Living in isolation
Resource utilization
Devaluing of their child’s life
Physical and long term dependence
Continual presence of “death”
Financial stability
Normalizing the home/lifestyle
Carnevale et al.Pediatrics 2006

36.  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

37. Carnevale et al.
Pediatrics 2006

38. 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.

39.  Conduct a retrospective chart review of all
patients undergoing tracheostomy at
Children’s 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

40.  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

41. 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

42.  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

43. 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?

44. Children’s Mercy Hospital has joined a
collaborative on tracheostomy:
The Global Tracheostomy Collaborative
Globaltrach.org

45. Infant Home Ventilator Team
Pulmonology
Otolaryngology
Beacon Clinic

46.  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

47. Questions/Suggestions/Feedback