Table 5.

Proposed Standardized Criteria for Discharge of an Invasively Ventilated Child to Home

1. The child must be medically stable for discharge.

• No significant change to ventilator settings or oxygen requirement for at least several days and preferably several weeks before discharge.

• No acute decompensation events (e.g., PICU transfers) within the few days to weeks before discharge.

• Ventilator and oxygen requirements compatible with long-term medical stability and equipment available for home setting.

• Home respiratory equipment trialed and tolerated in the hospital for at least 24–48 h before discharge.

• Must tolerate the transport to and from hospital.

2. Family caregivers must demonstrate the willingness and ability to care for the patient.

• Caregivers must demonstrate competency in delivering all prescribed therapies (e.g., medication administration, feeding, respiratory care, CPR, home ventilator use, responding to monitors).

• Caregivers must demonstrate competency in the care and replacement of their child’s tracheostomy, and caregiver education must include recognizing and responding to urgent issues such as tube obstruction, decannulation, and bleeding from tracheostomy.

• At least two family caregivers must be fully trained in all aspects of the child’s care.

• Caregivers must understand the importance of the continual presence of an alert caregiver who can respond to alarms and emergencies.

• Caregivers must agree to care for their child in situations when additional services (such as in-home nursing) are not available even for extended periods of time.

• Caregivers should complete an independent stay before hospital discharge during which they are responsible for all aspects of the child’s care (including responding to simulated emergencies).

• Routine hand washing is essential and its importance cannot be overemphasized.

• Caregivers must be able to safely transport the child in both routine and urgent situations (a “Go Bag” with all necessary travel items, including an extra tracheostomy tube and obturator, a size smaller tracheostomy tube, suction catheters, scissors, tracheostomy tube ties, and lubricant, will remain with the child at all times; disability parking privileges should be considered).

• Family caregivers should understand that if the child improves and no longer requires the same amount of professional caregiver support, they will be required to assume increasing responsibility for the child’s care.

• Family caregivers must be instructed not to engage in cigarette smoking near the child and respiratory equipment, and smoking cessation should be encouraged.

3. A DME company must be available and able to provide the required equipment and technical support.

• The DME (or trained personnel from discharge facility) must perform a home inspection to confirm that the home environment and electrical systems are adequate for the necessary medical equipment.

• The DME company must provide 24-h availability as a resource and to service the equipment, including same-day replacement of malfunctioning equipment.

• DME respiratory clinicians should visit patients at least monthly and more often as needed.

4. Professional in-home caregivers (e.g., nurses) as required to support the family must be arranged before discharge.

• Home professional caregivers must maintain infant/child CPR certification.

• Professional caregivers must be required to achieve the competencies expected of the child’s family-based caregivers.

• Each professional caregiver must complete ventilator training involving the specific type of ventilator used in the child’s home.

• Professional caregivers must be available to meet the child at home on the day of discharge.

• An accredited agency must provide professional caregivers with experience in home mechanical ventilation and will maintain training to ensure maintenance of skills.

• Professional caregivers must be instructed not engage in cigarette smoking while on duty.

5. The home and community environment must be safe and allow access to routine and urgent care as needed.

• Primary care, pulmonary subspecialty care, and care coordination must be provided in a collaborative manner consistent with the family-centered care and Medical Home models.

• A formal safety plan should be posted near the patient to include: emergency contact numbers (EMS, primary care provider, specialty providers, DME contact, nursing agency) and any medical information essential to the child’s care (allergies, medications, ventilator settings, specific instructions).

• A functioning phone must remain with the patient in case of emergency.

• The home should be safe and free from fire/health/safety hazards and provide easy access to the child at all times.

• The home must have a functional fire extinguisher that home occupants are able to operate. A home fire escape plan that includes the patient and minimal equipment needed for life support should be in place.

• The ambient temperature in the home should remain within the range recommended by the ventilator’s manufacturer.

• Irritants (e.g., cigarette smoke, incense burning, molds) should not be present.

• Local EMS should be made aware of the patient and the patient’s condition. On the basis of distance from emergency services, consideration should be given to additional back-up equipment in home.

• Letters requesting that services be restored quickly in an outage should be sent to the telephone and utility companies.

Definition of abbreviations: CPR = cardiopulmonary resuscitation; DME = durable medical equipment; EMS = emergency medical/transport services; PICU = pediatric intensive care unit.