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Ventilator Assisted Children at Home
Guidelines for Discharge of Children Dependent on Respiratory Life Support Equipment and for their Home Care Management
Discharging Ventilator Assisted Patients to their Homes
The increasing survival rate of premature infants, infants with congenital malformations and children with a variety of critical illnesses, has resulted in a remarkable growth in the population of children with chronic respiratory insufficiency (CRI). The technology available to support these patients in the home environment has, also, dramatically improved. A significant number of the patient with CRI who are admitted to a Pediatric Intensive Care Unit (PICU) for treatment of acute life threatening respiratory insufficiency, do not fully recover. These patients require the placement of tracheostomy cannulas, as they remain dependent on mechanical ventilation for an extended period of time. Their discharge from the PICU as ventilator-assisted individuals is limited to 3 possible destinations:
- Sub-acute respiratory rehabilitation center
- Chronic respiratory rehabilitation center
The decision as to where a patient with CRI should be transferred to is often multi-factorial. This decision has to take into account the clinical condition of the patient, the socio-economic background of the family and the availability of support services in his or her community. However, whenever possible, the ultimate goal should be to have all patients with CRI return to their homes and families.
The program outlined herein provides guidelines to assist in the potentially complex process of transferring a patient dependant upon mechanical ventilation from the hospital (PICU) to his home.
These guidelines focus primarily on the following management issues of CRI at home:
- Adequate maintenance of the artificial airway (tracheostomy cannula)
- Adequate gas exchange (oxygenation and ventilation)
- Adequate nutritional intake to promote growth and development
The general pediatric care of these patients, which includes immunization, growth and development, and the management of intercurrent illnesses, should be the responsibility of the patient's general pediatrician.
The Responsible PICU Team for the Patient Discharge:
- Critical care physician
- Clinical nurse specialist
- Case manager
- Social worker
- Respiratory therapy coordinator
- Home health care agency
- Durable medical equipment company
The Critical Care Attending Role
The physician in the Division of Pediatric Critical Care Medicine is expected to provide counseling and education to the family, to provide the necessary documentation from appropriate agencies, reimbursement parties and service groups, AND to prepare a medical summary (complete a database form).
The physician will:
- Prescribe the ventilator settings
- Prescribe the patient's oxyhemoglobin saturation range
- Prescribe the patient's desired end-tidal CO2 range
- Determine the frequency of visits to the hospital's outpatient clinic for routine checkups
- Monitor the adequacy of the tracheostomy cannula size
- Maintain an adequate patient record
The Case Manager/Nurse Specialist Role
- Participates in counseling and education for the family relative to disposition alternatives
- Plans, implements and evaluates family education plan
- Participates in decisions regarding home equipment and assists in preparation of equipment list
- Surveys nursing agencies and recommends possible agencies to family
- Submits appropriate nursing referral
- With social worker, prepares list of emergency resources
- Addresses home environment issues with family
- Collaborates with respiratory and rehabilitation therapists to plan mobility of child (e.g.) wheelchair with ventilator mounting
- Prepares nursing summary
- Facilitates outpatient visits for medical consultations
- Discusses periodically the clinical condition of the patient with his or her care providers
Social Work Role
- Participates in assessment, counseling and education of family relative to home care
- Assesses family strengths and weaknesses
- Assess financial supports and resources
- Makes appropriate referrals for professional services
Respiratory Therapy Role
- Participates in decision on home equipment and assists in development of equipment list
- Surveys equipment companies/vendors and with physician makes recommendation to family
- Completes appropriate aspects of family education and home caregivers education plan
- Addresses home environment issues with discharge team and family.
Mandatory Steps Prior to Discharging the Patients from the PICU to Their Homes
- Parents' education and skills acquisition.
- Arrangement of home skilled nursing and respiratory services
- Acquisition of equipment and supplies.
- Assessment of the home for adequate electrical supply, space and safety considerations
- Maintaining patients' data base.
- Provision of a plan for routine follow up, emergency consultations.
Our Critical Care staff provides sedation services for procedures performed by various disciplines. The sedation is given most commonly in the critical care procedure room or in the PICU, but may, also, be administered in the CT/MRI study rooms, catheterization laboratory and gastroenterology procedure room.
The critical care sedation service is only used for acute and urgent procedures. The Department of Anesthesia maintains a quality assurance program for this service.