The discharge readiness of infants is usually determined by the demonstration of achieving several minimum functional competencies. These competencies include (1) thermoregulation; (2) control of breathing without apnea, bradycardia, or desaturation; (3) respiratory stability with adequate oxygen saturation and ventilation; and (4) sustained weight gain. With improvements in neonatal intensive care leading to increased survival of very preterm and very ill infants, a growing number of infants may not achieve these minimum competencies, especially those involving adequate respiratory function, in a reasonable time frame without requiring especially prolonged hospitalization or without use of technology.
Prolonged use of technology to support respiration results in difficult choices about disposition. Simply extending hospitalization allows continuity of care. However, prolonging inpatient hospitalization has several significant disadvantages. These include:
Increasing the period of separation of infants from their families. Several studies have shown that decreased visitation by parents during the neonatal intensive care unit (NICU) hospitalization results in decreased bonding.
Increasing the risks of hospital-acquired morbidities, such as hospital-acquired infections.
Decreased availability of required developmental therapies. Most infants who require technology to support breathing are in acute-care facilities. Such facilities tend to dedicate fewer resources to rehabilitation services (occupational therapy, physical therapy, etc.) that growing infants often require to optimize neurodevelopment.
Depending on the capabilities of home caretakers and the resources in the community, pediatric home ventilation may be a feasible option in certain situations because of improvements in ventilator technology and increased prevalence of outpatient follow-up support. However, to minimize risks, careful planning is required.
The goal of this chapter is to review the factors to consider when deciding to discharge a technology-dependent infant to home, as well as providing guidelines to accomplish a safe transition.
Factors to Consider When Determining Readiness for Discharge
Determining the appropriate timing to safely discharge a technology-dependent infant from the hospital after a stay in the NICU can be complicated. This decision is made primarily on the basis of the infant’s medical status but requires consideration of several additional factors ( Table 41-1 ). These factors include:
Medical stability of the child. Infants need to be clinically stable for a minimum of 2 to 4 weeks. Clinically stable means no major diagnostic or therapeutic changes in the management, with stable ventilator settings and oxygen requirement. There is no absolute maximum level of support that precludes discharge, but typically the oxygen requirement includes FiO 2 ≤ 40% and peak inflation pressure (PIP) <30 cm H 2 O for pressure-limited ventilation. Infants with higher pressure limits (close to but <30 cm H 2 O) should meet all other safety criteria (i.e., no requirement to increase settings within 2 weeks, dedicated caregiver, etc.) as described in this section. For all parameters (PIP, oxygen concentration, etc.) there needs to be an ability to increase levels at home without automatically requiring a visit to the emergency department. In addition, the infant needs to be able to tolerate a nutritional regimen that allows adequate growth.
Availability of care providers. The level of care/support required at home varies with each child. Usually, at least one parent must be dedicated to the care of the child. Families of technology-dependent children qualify for home nursing support, but the number of hours filled often falls short of those eligible or those deemed necessary. Especially in households with other siblings, the increased care needs of the technology-dependent child often require a caregiver without other distracting responsibilities.
Seasonal factors. While technology-dependent infants can be discharged in any season, the risk of rehospitalization due to viral infection is increased in the fall and winter months. If available, transition to a rehabilitation facility during the peak viral season may be desirable not only to minimize infectious risk but also to allow additional training and potential improvement in medical stability.
|Treatment plan for all medical conditions is in place, will not require frequent changes, and can be implemented at home|
|Adequate nutritional plan in place|
|Safe and secure airway: Tracheostomy with sufficiently mature stoma to allow tube changes or stabilized on regimen of non-invasive ventilation (NIV) with minimal risk for aspiration|
|Able to clear secretions, spontaneously or with assistance|
|Oxygenation stable, including during suctioning and repositioning|
|Stable FiO 2 ≤0.4 with positive end-expiratory pressure ≤8 cm H 2 O|
|Stable ventilator settings with peak inflation pressure ≤30 cm|
|Stability criteria met for 2-4 weeks|
|Stable home and family setting|
|Willing and able caregivers identified and trained prior to discharge|
|Adequate financial resources and mechanisms for reimbursement identified prior to discharge|
Most important, the decision to initiate transfer of a ventilated patient to home (instead of extension of hospitalization in an acute-care facility or transfer to a rehabilitation facility) requires confirmation that the patient’s needs can be balanced with resources at home. The needs to be considered include physician availability and care (including pulmonary subspecialist care) and appropriate equipment and personnel (nursing care, respiratory care, personal care attendants, and family members). The remainder of this chapter describes guidelines to facilitate a successful transition to home and also provides guidance regarding the discharge of infants on home oxygen therapy.
Discharge of the ventilator-dependent child requires a multidisciplinary approach. The team needs to include hospital and community-based personnel, including those who will continue to monitor the patient in the outpatient setting. Although there is no standard method for coordinating the discharge, we recommend a collaborative team approach that includes the following components:
Family caregivers: Clearly, the most important decision makers in the process of discharging ventilated patients are the family members themselves, who need to be involved in all aspects and fully able to medically care for the patient.
Medical discharge coordinator: Hospital discharge planners have specific expertise with reimbursement-related issues, specifically the financial issues including coverage of durable medical equipment (DME) by health care benefits and coverage of nursing personnel. Discharge planners assist families in the identification of all health care benefits covered by third party insurers, entitlements, and assistance from federal, state, or local agencies.
Bedside clinical nursing staff: Prior to discharge, the bedside nursing team needs to identify all potential physician subspecialist caregivers (potentially pulmonology, otolaryngologist, and certainly the primary care pediatrician) to confirm that all discharge criteria for each specialty have been met and to arrange appropriate follow-up visit schedules. In addition, bedside nursing is often responsible for the direct teaching of basic nursing care skills to the home caregivers.
Respiratory care clinicians : Whereas the bedside nursing staff is responsible for teaching nursing care, the respiratory care therapist provides the specific teaching regarding the operation and use of the ventilator.
DME provider : DME providers are responsible for providing the ventilators and associated supplies to patients on long-term ventilation.
Primary outpatient physician : For most patients, even those with complex medical needs, the primary leader of the outpatient team is the primary care pediatrician. For ventilator-dependent patients, a specialist (pulmonologist or home ventilator team clinician) should be included as a primary consultant for families.
Predischarge Needs Assessment
Prior to discharge to home, all infants require an assessment to ensure that they are in fact ready for discharge. The components of a comprehensive assessment include the home environment, the availability of necessary equipment, and the availability of personnel resources to allow safe care. The level of support required at home will vary with each child and family. Factors to consider include level of medical care required, including (1) time dependent on ventilator, (2) the amount of “reserve” in the event of ventilator failure or disconnection or airway obstruction, (3) other care needs related to feeding issues, and (4) other demands on the family’s time, particularly the presence of other children and work commitments. Although children can be discharged to home at any time of the year, sometimes discharges in the peak of viral season, when infectious risks are highest, may be deferred. Finally, the availability of nonfamily assistance (home nursing) has to be a primary consideration.
The home environment needs to include sufficient space for all of the medical equipment and supplies, including the ventilator. The home environment needs to have appropriate power supplies for all the equipment, and accessibility to emergency medical services needs to be ensured through the presence of a working telephone. Power companies should be notified of the electrical requirements and location of persons who require mechanical ventilation.
Equipment and Supplies
All children should be trialed on the equipment designated for home use while still in the hospital. Of note, most ventilators are not approved for use in infants below a minimum weight (5 kg), so discharge may need to be deferred until the infant has achieved this minimal weight to utilize an approved ventilator.
In addition to the ventilator, an itemized equipment list should be prepared and checked by the team ( Table 41-2 ). A monthly estimate of disposable supplies and consumables also needs to be provided.
|Mechanical ventilator (also need backup)|
|Tracheostomy tube adapter/connector|
|Humidifier and heater|
|Heat and moisture exchanger|
|Oxygen supply system (stationary and portable)|
|Oxygen bleed-in adapter to ventilator|
|Noninvasive patient interfaces|
|Nasal mask or nasal pillows|
|Suction machine (stationary and portable)|
|Suction collection container|
|Other secretion clearance aids such as cough in-exsufflator|
|Spare tracheostomy tube (including next smaller size)|
|10-mL syringe used only to inflate or deflate cuff (for cuffed tracheostomy tubes)|
|Velcro tracheostomy tube strap|
|Sterile saline solution|
|Compressor for aerosolized medications|
A second ventilator is required for any child who is unable to cope for 6 hours off the ventilator. In the event of power failure, it is critical to have an alternative power source available, in the form of either batteries or a generator.
DME providers should have personnel trained to manage ventilator-assisted patients in the home.
In combination with the hospital-based respiratory therapist and bedside nursing staff, DME providers assist in training the family regarding the use and maintenance of the ventilator, as well as in some of the care techniques, such as suctioning and tracheostomy care. The DME provider should have backup equipment ready at all times to handle emergencies. The DME provider should also have an emergency response time clearly defined.
The agency selected to provide home health care should have adequate staff available and have a nurse case manager to follow the patient and the nursing care and staffing provided. Families may also contract with private-duty nursing, but this also requires coordination with the discharge planners.
Parents or caregivers need to be instructed on common potential scenarios that require urgent intervention. They should be able to recognize early signs and symptoms of illness and know how to respond. Local rescue and ambulance service should be informed that a technology-dependent child is in their region, so they can be prepared to provide emergency treatment or transport. In many cases, the closest hospital to a patient’s home may not have pediatric expertise. Still, the local hospital must be notified of potential emergency needs, because in many cases, transport to the local hospital is necessary, with subsequent transport to a more specialized pediatric facility via a trained pediatric transport team.
The discharging facility should provide parents with a printed summary of medical issues, ventilator settings, and medications to provide to emergency responders. If limits to resuscitation have been discussed, these also should be documented to avoid unwanted interventions.