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An estimated 8,000 children in the United States are dependent on mechanical ventilation at home. Despite technological advances for home monitoring of ventilated patients, the preventable death rate among these children has not changed significantly during the last 2 decades. Analysis of the data indicate that the primary causes of preventable death in ventilator-dependent children at home are inadequate training, improper response, and a lack of vigilance by the clinicians who care for them.
A pediatric home care agency has had difficulty covering weekend shifts for Jack Bell, a 2-year-old boy with bronchopulmonary dysplasia (BPD). Jack has a tracheostomy tube and is ventilator-dependent. Jack has recently been weaned from mechanical ventilation during the daytime. His home care agency receives a call from a nurse, Lisa, who is seeking weekend work. Lisa tells the agency scheduler that she has no ventilator experience, but does have tracheostomy care skills. The scheduler, who is not a nurse, assigns Lisa to care for Jack during the day shift when Jack is off the ventilator. When Lisa arrives for her first shift with Jack, she notices the night nurse removing Jack from the ventilator for the day shift. The night nurse reports that Jack has had increased secretions, but that his oxygen saturation remained above 94% throughout the night. She advises Lisa to closely monitor Jack for signs of infection during the next 12 hours. One hour into Lisa's shift, Mrs. Bell, Jack's mother, leaves for work. Soon Jack's breathing becomes labored and his oxygen saturation drops to 91%. Jack's heart rate and work of breathing steadily increase, and Lisa has difficulty managing his copious tracheal secretions. Lisa calls Mrs. Bell, who tells Lisa to put Jack back on the ventilator with supplemental oxygen. Lisa informs Mrs. Bell that she has no ventilator experience and does not know what to do. Mrs. Bell states that she will leave work immediately and will be home within 30 minutes. Jack's pulse oximeter sounds a continuous alarm when his oxygen saturation drops below 91%. As Lisa anxiously waits for Mrs. Bell to arrive, she silences the pulse oximeter each time it alarms hoping that the monitor will self-correct. After 10 minutes, Jack's respiratory distress leads to a full respiratory arrest. Lisa calls 911 for help. The 911 supervisor dispatches an ambulance to the Bell home and provides Lisa with special cardiopulmonary resuscitation (CPR) instructions for a child with a tracheostomy. Eight minutes later, Mrs. Bell and the emergency crew arrive simultaneously. Jack is unresponsive and pulseless.
Mechanical ventilation is a high-stake, high-risk intervention. Data support that employing correct nursing interventions improves mortality, decreases frequency and lengths of stay in intensive care units, and decreases cost and complications for the 1.5 million ventilator-dependent people in the United States (Corbridge et al., 2010). Of this number, there are an estimated 8,000 children with chronic respiratory failure currently receiving mechanical ventilation at home (Boroughs & Dougherty, 2011a).
Over the past 30 years, the Ventilator Assisted Children's Home Program (VACHP) has provided services to more than 950 ventilator-dependent children. These children, ranging in age from birth to 22 years old, are grouped into one of three diagnostic categories: (a) chronic lung disease (CLD), (b) congenital anomaly or syndrome (CA), and (c) neuromuscular/nervous system disorder (NM/NS) (Table 1). Most of these ventilator-dependent children have tracheostomies; a small percentage receives mask ventilation. All of the VACHP patients qualify for home nursing services as a result of their ventilator dependence.
During the last 2 decades, despite technological advances in home monitoring, the accidental death rate of VACHP children has remained nearly the same (27.5%). The preventable death statistic of VACHP reflects a national trend (Edwards et al., 2010). Analysis of the data indicate that the primary causes of preventable death in ventilator-dependent children at home are inadequate training, improper response to emergencies, and a lack of vigilance by the clinicians who care for them.
There are no universal standards for how many hours per day of nursing care a ventilator-dependent child must receive in the home; however, the American Thoracic Society (ATS) has developed guidelines for home nursing coverage based on national research and expert opinion. These guidelines for the home care of the child with a tracheostomy have been adopted as a standard by most children's hospitals to successfully transition children from the hospital to home. "All children should receive skilled home nursing care during a transitional adjustment time after discharge. The duration and daily extent of this care must be prescribed by the physician on an individual basis, with periodic reassessment by members of the tertiary care center team. Many children will have an ongoing need for skilled nursing care and this reassessment will provide information as to the need to increase or decrease the level of skilled home nursing support" (ATS, 2000, p. 303). The ATS is developing guidelines for children at home receiving mechanical ventilation that may be available next year. (For further information, access the ATS Web site at http://www.thoracic.org).
VACHP patients receive 12 to 24 hours of nursing care per day, with an average of 16 hours per day that is funded through their insurance companies. In most cases, these children are reviewed by the insurance company for continuation of nursing services every 6 months, and physicians must provide letters of medical necessity for these home services. If the family disagrees with the number of hours that the insurance company approves, they have a three-level appeal process to reverse the decision.
Ventilator-dependent children are a high-risk population. Complications with the artificial airway or the ventilator are potentially life threatening. The preparation and education of home clinicians must be thorough and comprehensive. These nurses need to be highly skilled in routine and emergency tracheostomy and ventilator management. The persistent preventable death rate indicated that we needed to assess the families' experiences, to evaluate the caregiver training and response to emergencies, and to implement an action plan to reduce this rate.
VACHP administered an assessment survey to 107 randomly selected families who were enrolled in the program. These families identified that home care was frequently disrupted by (1) the lack of available nurses and (2) an inadequate level of skill demonstrated by the home care nurses. In response to these survey results, the organization assessed the skill level of 21 home care nurses (16 RNs and 5 LPNs) who were providing home care for VACHP children. The nurses had an average of 14 years of experience as nurses (range 1-28 years), with an average of 4.6 years' experience in pediatric home care (range 1-16 years). The assessments revealed that the knowledge of home care nurses was deficient in many areas of care. The areas were respiratory assessment (71%), tracheostomy care (43%), tracheostomy string change (90%), suctioning of the tracheostomy (95%), tracheostomy tube change (90%), tracheostomy emergencies (86%), CPR with a tracheostomy (47%), ventilator care and management (86%), and troubleshooting ventilator alarms (100%). Individual training was conducted by VACHP staff with each of the 21 nurses over a 7- to 13-hour period depending on the individual's follow-up assessment of skill and until a score of 100% was achieved (Dougherty et al., 1996).
From the data, VACHP developed a training curriculum that provided training to a greater number of nurses. Training components included pretraining evaluation, individual skill level validation, simulation, return demonstration, and posttraining evaluation. During a 9-year period, approximately 600 frontline nurses were trained by VACHP to provide proficient care to pediatric ventilator and tracheostomy-dependent children in the home (Boroughs & Dougherty, 2009). In 2008, the curriculum received Pennsylvania State Nurses Association continuing education accreditation. Since that time, the training has evolved into a "train-the-trainer" course in order to reach nurses in leadership positions who use the VACHP training materials to instruct and mentor home care nurses (Table 2.).
Thirty years of tracking VACHP outcomes and identifying trends reveal five primary areas that are lacking in nurse education and preparation for nurses who care for ventilator-dependent children at home.
1. Home care nursing skill assessment often consists of self-reporting, group in-services and video or online instruction that does not require return demonstration to validate competency.
2. Nurses may not receive ongoing training, skills assessment, or clinical updates of practice changes in tracheostomy and ventilator care.
3. Nurses may not have ventilator or tracheostomy experience in hospital settings under supervision before working autonomously with ventilator-dependent patients in the home.
4. Nurse-required CPR instruction usually does not include specific tracheostomy and ventilator emergency protocols.
5. A lack of vigilance has been identified as one of the leading causes of preventable deaths of children at home.
Of the 600 nurses trained by VACHP, nurses who identified themselves as experienced in tracheostomy and ventilator home care scored an average of 60% on pretraining assessment. Some scored as low as 20%, suggesting the need for intensive training to achieve competence. Skill level requires validation by means of return demonstration before provision of autonomous care in the home. Self-reported skills levels are often inaccurate.
Competency is manifested in autonomous clinical decision making, knowledge, technical skills, prioritizing, multitasking, interpersonal skills, and-most of all-patient outcomes. Clinical competence is more than adequate, baseline performance. The critical thinking and superior technical skill embody the essential characteristics of nurse competency required for the care of ventilator-dependent patients. Structures that foster clinical competency in home care nurses include educational training, patient care review sessions, and application of evidence-based best practices during ongoing training (Schmalenberg et al., 2008).
Group in-service and electronic or computer instruction are valuable only when simulation and return demonstration are required to reinforce theory, to practice clinical assessment skills, and to validate competency. Individuals have different learning styles or preferences that make it difficult to accommodate all preferences in group instruction. Opportunities for simulation and return demonstration transfer information into knowledge and skill. Studies (Corbridge et al., 2010; Johnson et al., 2008) report that all students participating in both online and simulation trainings greatly prefer simulation to an online teaching method. Johnson and colleagues (2004) found that patient simulation was superior to using CD-ROM for application, analysis, synthesis, evaluation, and critical thinking. Simulation offers students rich clinical experiences in a safe environment where students can correct mistakes without adverse consequences (Hovancsek, 2007; Jeffries, 2009). Through simulation practice, nurses mentally prepare to visualize effective responses when actual emergency care is required.
Despite the value of simulation using mannequins, the value of experiential learning with human patients cannot be replaced. From the experience of VACHP, simulation training alone cannot prepare the nurse for the unique needs of patients or the unpredictability of real-life circumstances. For example, changing the tracheostomy tube of a doll cannot mirror the experience of changing the tube on an active toddler. Proper response to tracheostomy and ventilator emergencies must be clinically choreographed in a stepwise order with each patient in advance so that the response during a true emergency is delivered appropriately and without hesitation (Table 3). On-site agency and in-home competency assessments validate clinical competency of the nurse (Table 4).
Home care agencies hold in-service "days" for nurses to fill mandatory agency requirements, to provide credits to nurses toward their licensure renewal, or to recertify CPR. In addition to training received at the agency, each home care nurse should be observed changing a tracheostomy tube during supervisory visits to the home, as well as validating the operation of the ventilator equipment. Home care staff nurses have the responsibility of availing themselves of the opportunities offered (Schmalenberg et al., 2008). Many resources are available to provide instruction. Respiratory companies encourage their respiratory therapists (RTs) to provide in-home instruction to clinicians and families and to be available to clients for 24 hours per day. Agencies should schedule hands-on equipment in-services with the RTs for their staff nurses. Nurses also should use available time to review the operation manuals that are provided with each piece of equipment. For example, the LTV series of ventilators commonly used in pediatric home care have computer-simulated ventilators on CD with which to practice and to reinforce the knowledge taught by RTs (http://www.pulmonetic.com). The new Trilogy ventilators also have training CDs to instruct nurses and families (http://www.philips.com/respironics). As new technologies and upgrades to existing technology emerge, agencies should schedule corresponding nurse trainings.
Although caring for ventilator-dependent children, evidence-based practice should be the hallmark of the nursing creed. Employing evidence-based practice provides nurses with the knowledge to differentiate between clinical opinion and scientific evidence (Forbes & Hickey, 2009). Research has found, however, that even seasoned nurses often rely on outdated practices that are proven to be ineffective or harmful (Halm & Krisko-Hagel, 2008). Since 2000, nursing research has led to alterations in nursing practice, particularly in the areas of suctioning, saline instillation, physiotherapies, and CPR of the patient with a tracheostomy (Boroughs & Dougherty, 2011b). Home healthcare nurses cannot effectively mentor parents or ensure patient safety using outdated practices. "[Current] practice makes perfect," should be the motto of the home healthcare nurse.
When VACHP was established 30 years ago, nurses were required to have prior supervised hospital intensive care experience to work in the home autonomously with ventilator-dependent children. Experience in the hospital provided immediate access to the assistance of other clinicians, a stable environment, practice and protocol changes, and rapid emergency response.
Many nursing graduates seeking first-time employment are facing a shortage of hospital positions due to economic downturn (Carlson, 2009). Studies show that 75% of new nursing jobs from 2001 to 2008 were filled by nurses over 50 years old (Buerhaus et al., 2009). Unaffordable elective surgeries and a lack of medical benefits due to unemployment have led to hospital downsizing and hiring freezes (American Association of Colleges of Nursing, American Nurses Association, American Organization of Nurse Executives, & National League for Nurses, 2010). Healthcare reform may continue to affect hospital hiring patterns as the push for care is shifting to primary prevention in outpatient settings (Rother & Lavizzo-Mourey, 2009). As a result, hospital job growth has slowed while nursing home, home healthcare agency, and physician office jobs have experienced significant growth. Acute care hospital job growth will be the slowest (Cox et al., 2010). For new nursing school graduates, an alternative to acute care nursing includes home health care (Elwood & Larsen, 2011).
New graduates or inexperienced nurses who are employed by home care agencies may be required to make complex decisions based solely on the nursing assessment skills they acquired during nursing school. According to the research of Smith and Roehrs (2009), schools of nursing rely primarily on sophisticated simulation activities with mannequins, case studies, and role-playing. These methods, however, lack the valuable human factor needed to provide students with real-life opportunities to perform nursing skills and to interact with patients. In many communities without a major children's' hospital, pediatric patients are often located in units with adult patients so that the pediatric clinical rotation is interspersed throughout the semester. With social mandates such as Healthy People 2010 emphasizing the need for more services for chronically ill children, a different approach to teaching pediatric nursing must be incorporated into the nursing school curricula (Smith & Hamner, 2008).
Home care agencies face educational challenges when hiring and training new graduates and inexperienced clinicians. In 2008, the Visiting Nurse Association of America (VNAA) conducted a membership-wide survey to assess the impact of the nursing shortage on home care agencies. The report showed that the agencies had a 10% vacancy rate and 59% of cases are declined weekly because of inability to staff the cases. VNAA reported that new graduates were not adequately prepared for home care positions. Hiring recent graduates greatly increased expenses and the need for additional resources to provide the extensive training needed for safe and effective patient care (Carter, 2009).
Most home care nurses are required to have CPR certification. Standard CPR instruction does not include training for resuscitation of children with a tracheostomy. Although respiratory arrest is a leading cause of death in the general pediatric population, children with tracheostomy tubes are at an even greater risk. In contrast to adults, cardiac arrest in infants and children does not usually result from a primary cardiac cause. More often it is the terminal result of progressive respiratory failure, called asphyxial arrest. Asphyxia begins with a variable period of systemic hypoxia, hypercapnea, and acidosis; progresses to bradycardia and hypotension; and culminates with cardiac arrest (Kleinman et al., 2010). Prompt recognition of problems and action by the nurse may resolve acute respiratory distress, dyspnea, and increased work of breathing to prevent asphyxia and cardiac arrest (Grossbach et al., 2011). Thus, annual CPR recertification of home care nurses must include specific guidelines for delivering breaths through a tracheostomy in a pediatric patient. The standard CPR technique of mouth-to-nose or mouth breathing is of no value to pediatric patients who have critical airways that prevent delivery of air through the upper airway.
Just as standard CPR requires a review of theory, the practice of performance skills, and a return demonstration to achieve certification, so must CPR for the child with a tracheostomy. Understanding the theory of CPR for the child with a tracheostomy is imperative if the child is to be resuscitated quickly. Nurses who lack knowledge or skill cannot correctly prioritize these tasks in tracheostomy or ventilator emergencies (Schmalenberg et al., 2008). Rehearsing the component steps of CPR for the child with a tracheostomy will reinforce the theory, prepare the nurse to recognize the problem, and enable the nurse to prioritize actions when faced with emergencies while alone in the home.
A vigilant, well-trained caregiver is the best prevention for pediatric tracheostomy and ventilator emergencies in the home. According to Meyer and Lavin (2005), the public and the nursing profession are concerned with the capacity for nurses to be consistently vigilant caregivers. Professional nursing vigilance is a prerequisite for informed nursing action. It is the mental work of nursing that is fundamental to nursing practice. Vigilance includes anticipating what might be, calculating the risk, monitoring results and outcomes and staying ready to act. Vigilance is the backdrop against which professional nursing activities are performed.
Many parents report that a primary frustration of home care is the lack of vigilance, especially when nurses sleep on the job. It is difficult for parents to develop trust, confidence, and rapport with a nurse who has been found asleep. A lack of vigilance due to sleeping is one of the leading causes of death in pediatric home care. Agencies must take action to ensure that work schedules for nurses allow for proper rest between shifts. They must also make certain that corrective action is taken after parents report a nurse sleeping on the job.
To be able to anticipate what might occur, clinicians must take inventory of equipment, medications, and oxygen supplies during each shift. Emergency equipment must be labeled and in clear sight, ready to use at a moment's notice. One of the most vital pieces of emergency equipment is a telephone preprogrammed with emergency numbers and the house address labeled on the phone. During emergencies clinicians may be unable to recall the correct phone number or address, which can delay emergency responders.
Vigilant nurses use every tool available to provide safe, effective care in the home. They maintain an awareness that emergencies can happen at any time. Nurses who are prepared and maintain a sense of anticipation develop a level of confidence to respond quickly and appropriately under pressure.
A lack of vigilance may lead to complacency without the clinician's awareness. A ventilator-dependent child may be making significant gains toward liberation from mechanical ventilation and be "emergency-free" for many months. During this time, it is easy to forget that a tracheostomy tube can occlude or dislodge quickly. The clinician must always be cognizant of the child's vulnerability and be ready to act. Sadly, we have seen children who are nearing decannulation die unexpectedly from preventable causes such as mucous plug or accidental decannualtion. Families and nurses are devastated when this occurs.
Mary Jones, a new nurse graduate, applies for a position at a pediatric home care agency. During her interview with the agency's clinical manager, Mary states that she has extensive experience with tracheostomy management having helped care for her ventilator-dependent sister for many years, and that she would like to care for a child with a tracheostomy. The clinical manager administers a written test to Mary. Mary receives a high score on the tracheostomy and LTV ventilator management sections. The manager accompanies Mary to the agency's simulation lab to assess Mary's tracheostomy and ventilator skills on a mannequin. Mary performs well. There is a schedule opening for 2-year-old Jack Bell, a child with bronchopulmonary dysplasia (BPD). The clinical manager calls Jack's mother to schedule an orientation day for Mary with one of Jack's regular nurses, Susan, on a day that a routine tracheostomy change is planned for Jack. During Mary's orientation in the home, Susan shows Mary where the emergency and standard equipment and medications are located, and Mrs. Bell explains her expectations for Jack's care. Mrs. Bell states that a primary expectation is that the nurses who care for Jack are competent and vigilant and never sleep on the job. Mary and Susan review Jack's prescribed plan of care. The clinical manager arrives at the Bell home in time to observe Jack's scheduled tracheostomy tube change by Susan and Mary. The tube change is completed without complication. Mary and Susan verify correct tube placement, perform a thorough respiratory assessment, and document the procedures in Jack's chart. Susan observes Mary providing independent care for the rest of the shift and quizzes her on proper response to "what-if" emergency scenarios. With Mrs. Bell's approval, Mary is scheduled to work the following Saturday when Mrs. Bell will be home during the shift. The clinical manager schedules her monthly supervisory visit to the Bell home to coincide with Mary's work schedule so that she can validate Mary's successful integration into Jack's home care.
The key to preventing accidental deaths of ventilator-dependent children in the home is comprehensive preparation of the nurses who care for them. Case Study 1 and Case Study 2 present the worst and the best practices for safe and effective home care of pediatric ventilator-dependent children. To decrease accidental mortality among ventilator-dependent children at home, agencies must ensure best practices where nurses working in the home are clinically competent and vigilant. Agencies that prepare their nurses and provide oversight and opportunities for ongoing training succeed in providing safer, more effective care. Parents, even those who are highly skilled to care for their own children, cannot be held to the professional standards of a nurse. Therefore, parents must rely on the knowledge, skill, and vigilance of home care nurses.
This article is a call to action to raise the standard of pediatric home care. The preventable death rate of ventilator-dependent children at home will decrease only when all are committed to maintaining high standards of care.
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