Tracheostomy

The Social and Ethical Implications Surrounding Pediatric Tracheotomy Laura Miller-Smith, MDPediatric Critical Care MedicineChildrens Mercy Clinics and Hospital

NO DISCLOSURESOBJECTIVES: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)HistoryDescriptions 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 ADJ Olszewski, Otolaryngol Pol. 2007;61(3):349-52.Modern HistoryBetween1500 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 INFANCYJOHN A. BIGLER et alPediatrics 1954;13;476What are the pediatric indications?Formerly, the main indication was acute airway inflammation/infectionPresumed that underlying pathology would resolve, and decannulation would be early

Currently, most commonly performed for prolonged intubationUnderlying pathology is chronic in natureUnderlying 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 RapidlyIncreasing data being published on hospital experience with tracheotomy

Rate of the procedure is increasing rapidly

At Childrens Mercy hospital, we are performing > 50 per yearExperience from Auckland: 17 year review

ComplicationsComplications from Alberta Childrens Hospital over 17 years of experience:90% incidence of infection56% incidence of tracheal granulation10% incidence of mucous plugging resulting in cardiopulmonary arrest10% risk of accidental decannulation Al-Samri M, et al. Pediatric Pulmonol, 2010 Outcome in patients with tracheostomyAll 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 deceasedEdwards JD, et al. J Pediatr 2010; 157Outcome in patients with tracheostomyCause of deathProgression 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 2012But what would you want for yourself?

Needle JS, et alCrit Care Med 2012Our Viewpoint Affects What We Recommend:

Needle JS, et al. Crit Care Med 2012; 40Healthcare 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 ConversationDoc: 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)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 dataWhat Do We Know?

Inpatient Health Care Utilization- A growing demandKids 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)Inpatient Health Care Utilization- A growing demandThese hospitalizations associated with:higher mortality longer length of stay higher mean chargesmore ED visitsmore discharges to chronic care facilities

83% increase since 2000 in hospitalizations charged to Medicaid/Medicare

105% increase in total charges

Delays in DischargeStaff RecruitmentHome health servicesNursing availability

FundingFrequently requires applying for Medicaid, Social Security Disability, CHIP, WIC, etc.

Graf JM et al. Pediatric Pulmonology 2008; 43Edwards EA et al. Arch Dis Child. 2004; 89Delays in DischargeHousingChange of housingGetting electricity Phone serviceCleanliness

Family IssuesWho will provide careIs medical foster care needed

Delays in DischargeDelays in appropriate parent educationLack of transportationLack of childcareLanguage barriersMissed class appointmentsAnxiety/fearGraf JM et al. Pediatric Pulmonology 2008; 43Edwards EA et al. Arch Dis Child. 2004; 89Availability of home nursing in UK for tracheostomy patients:

Hopkins C et al. Int J of Pediatr Otolaryngol 2009

Parental PerceptionsParents of infants/toddlers with tracheostomy state they have moderate distress with decreased QOL Joseph RA, et al. Neonatal Network 2014; 33 (2)Parental PerceptionsParents of children with tracheostomy rate their children as having low functional statusRane 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 2006Voiced Concerns:Child worried about being a burdenSibling rivalryStrain on marriageLiving in isolationResource utilizationDevaluing of their childs lifePhysical and long term dependenceContinual presence of deathFinancial stabilityNormalizing the home/lifestyleCarnevale et al.Pediatrics 2006How to ensure we are doing the right thing?Ethical concerns regarding trach:Best interestInformed ConsentParental authorityResource 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 2006Moving 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 includedInclusion CriteriaAny patient having undergone tracheostomy aged 0 days to 18 yearsAll genders and race/ethnicityAll patients seen between January 2010 and September 2014Exclusion CriteriaPatients > 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 SurveyConducted at follow-up clinic visits or via telephonePerception of informed consent/educationPerceived barriersPerception on patient/family QOLHome health nursing availability/skill/supportImpact on relationshipsImpact on finances/jobInsurance issues/complicationsWould you have done something differently?

Childrens Mercy Hospital has joined a collaborative on tracheostomy:The Global Tracheostomy CollaborativeGlobaltrach.org

Childrens Mercy ResourcesInfant Home Ventilator Team

Pulmonology

Otolaryngology

Beacon ClinicSummaryPediatric 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 familiesQuestions/Suggestions/Feedback