The Social and Ethical

Implications Surrounding
Pediatric Tracheotomy
Laura Miller-Smith, MD
Pediatric Critical Care Medicine
Childrens Mercy Clinics and
Hospital

NO DISCLOSURES

OBJECTIVES:

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

What is Tracheostomy/Tracheotomy?

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)

History

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.

Modern History

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

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

What are the pediatric indications?

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

Underlying pathology includes:

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.)

Incidence Increasing
Rapidly

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

Experience from Auckland:

17 year review

Complications

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

Outcome in patients with

tracheostomy

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

Outcome in patients with

tracheostomy

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

Where is the Ethical Dilemma?

What would you do?

Needle JS, et al. Crit Care Med 2012

But what
would
you want
for
yourself?
Needle JS, et al
Crit Care Med
2012

Our Viewpoint Affects What We

Recommend:

Needle JS, et al. Crit Care Med 2012;

40

Healthcare Teams
Concerns:

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?

Sample Conversation
(which may be a little over-simplified for effect)

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.

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

What Do We Know?

Inpatient Health Care Utilization- A

growing demand

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

Inpatient Health Care Utilization- A

growing demand

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

Delays in Discharge

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

Delays in Discharge

Housing
Change of housing
Getting electricity
Phone service
Cleanliness

Family Issues
Who will provide care
Is medical foster care needed

Delays in Discharge

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

Availability of home nursing in UK

for tracheostomy patients:

Hopkins C et al. Int J of Pediatr Otolaryngol

2009

Parental Perceptions

Parents of infants/toddlers with

tracheostomy state they have
moderate distress with decreased
QOL
Joseph RA, et al. Neonatal Network 2014; 33 (2)

Parental Perceptions

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

Carnevale et al.
Pediatrics 2006

Voiced Concerns:

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

How to ensure we are doing the

right thing?

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

Carnevale et al.
Pediatrics 2006

Moving Towards Standardinzing our

Practice:
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.

Under Review:

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

Outcome Measures:

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

Outcome Measures:

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

Outcome Measures:

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

Future Study: Parent Survey

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?

Childrens Mercy Hospital has joined a

collaborative on tracheostomy:
The Global Tracheostomy Collaborative
Globaltrach.org

Childrens Mercy
Resources

Infant Home Ventilator Team

Pulmonology

Otolaryngology

Beacon Clinic

Summary

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

Questions/Suggestions/Feedback