Pediatric VAD Patients See Benefit From Hospital Discharge
Management of advanced heart failure in the pediatric population has made many advances with the development of pediatric ventricular assist devices (VADs). An increase in the miniaturization of the adult VAD design is now allowing children to enjoy the same benefits that adults have by living with their VAD in an outpatient setting. The approach in pediatric mechanical circulatory support is moving beyond the goal of “supporting life” to actually “improving the quality of life.”1
As efforts continue to look into quality of life for children on VADs, mortality of children waiting for heart transplantation was studied looking at children listed in the UNOS database between 1999 and 2012. Patients were stratified by era (early being before 2005 and current being after 2005 given the introduction of pediatric specific VADs in 2005). The patients being supported by VADs increased from 6% to 16% from early to current era. With that, there was a 50% decrease in waitlist mortality.2
Until now, most children requiring long-term VAD support as a bridge to transplant were supported in hospital, with waitlist times varying from months to years. From a hospital perspective, inpatient VAD therapy requires significant direct and indirect costs related to patient care, as well as resource utilization.3 From a patient and family perspective, the ability to be at home has significant physical, emotional, and psychosocial benefit. Utilization of a multidisciplinary team to support these patients and families is vital to a successful discharge home. The VAD team needs to include ancillary roles such as physical therapy, social work, Chaplin, child life, palliative care, nutrition, case manager, financial counselor, and psychologist. Each of these roles will help support the patient and caregivers.
Training and Education
Training and education in preparation for the discharge of a pediatric VAD patient is crucial to the success and comfort of the patient and caregivers and comes with many considerations. Education about what a VAD is, the type of device that is going to be implanted, and the general considerations of life with a VAD encompasses many educational demands on the VAD team. You must identify learners who will be active in your patient’s care. Training and education for your patient needs to be age appropriate and varies vastly in the pediatric population because your VAD patient could be anywhere from 2 to 20 years old.
Meeting the patient and family in the preoperative stage, before VAD implant, is ideal, if possible. At introduction, it is important to establish a trusting relationship as a VAD resource for the family and patient. Setting up a time to sit together and provide an overview of what the general expected course of care is for a patient that is to receive an implantable VAD will help in the beginning stages of learning about their new device and contribute to the families informed consent process. Having the manufacture patient booklet and VAD demo equipment will enable them to learn more and have a brief hands on experience with the equipment. This is not the time to begin in-depth equipment teaching but to let them actually see and touch the device. Dedicate this preoperative visit to answer all of their questions and be transparent and forthcoming on the risks and benefits of the VAD.
Acute Postoperative Period
Making yourself regularly available during the acute postoperative period to offer support and encouragement by answering questions will continue to help the patient and family progress thorough this acute phase. This time should be spent on letting the family focus on the acute recovery of their child.
Get to Know Your Learner
In all situations, you must get to know your learners, how they learn best, the best times for teaching, and what situations might be distracting them from learning. Spend time getting to know the patient’s caregivers and what other burdens and stressors they are dealing with so that when you begin teaching, they are able to focus more on the material at hand.
Create a Teaching Schedule
Formalizing the training time helps set expectations and allows the learners to be able to schedule their time appropriately. Schedule not only the time of day for training but also what will be taught that day and how long the training will last. This structure allows for the learners to prepare ahead to review the material and open up their schedule around the teaching time. Most of the time, 1 hour blocks of education are the most patients or caregivers are able to focus without too much distraction. It is helpful to have structure around training, but it is important to set expectations that there might need to be times where flexibility is needed because of patient condition or other issues that might arise. See Table 1 for an example of topics for family VAD education.
Create Mutual Goals and Expectations
It is important to work together as a team to meet the needs of the patient, and the ultimate goal of independent caregivers who are able to handle the device on their own at home. For a lot of caregivers, it is overwhelming to think they will ever be able to manage their child and the device independently, and at home. Take time at the beginning of teaching to find out what motivates the learners, what their fears are, and then make goals together that are achievable stepping stones to the ultimate goal of being able to safely and independently care for their child and the device.
Create an Environment of Independence
Once the patient or caregivers master different tasks, communicate this to the rest of the team caring for the patient so that the learners can perform those tasks independently from shift to shift and day to day. This includes device connections, dressing changes, administering medications, response to alarms, and accompanying patient independently within the hospital. The more the patient and caregivers are allowed to care more independently within the safety and support of the hospital, the easier it will be for them to transition to caring independently for the device at home.
Celebrate Learning Milestones
Encourage the patient and family to celebrate even the smallest of milestones to help them gain confidence and realize they are able to take on this big challenge. Set up these milestones when you create your schedule and set your expectations. Not only do these celebrations instill confidence, but they can work to reinforce independence with the device. Excursions are inhospital or out-of-hospital trips the patient and caregiver can take, some supervised and some independently. These excursions happen throughout training to take the patient and caregivers to the next step of training. Excursions can happen after learners have been checked off on tasks such as device connections, alarm management, and symptom recognition of the patient. Inhospital excursions help to enforce learning with a close safety net, whereas out-of-hospital excursions help the patient and caregivers figure out how to deal with the device and normal daily tasks such as a car ride or being around larger groups of people.
Before discharge with a VAD, medical readiness must be thoroughly assessed. Stability of end-organ perfusion should be evident. Generally, having a stable, proven supportive VAD flow without requiring speed changes should have occurred. All surgical incisions and driveline healing should be occurring. Fluid balance may be a key outpatient concern for many patients and should be normalized before discharge, as well as adequate blood pressure control. Lastly, stabilizing the international normalized ratio (INR) and the dose of anticoagulants should occur before discharge. See Table 2 for an example of discharge criteria to meet.
Emotional preparedness for discharge will need to be fully assessed. Input from the parents is vital for successful assessment. This is a very scary time for children and families to ready themselves for self-care at home. Utilizing all the psychosocial support that has been offered throughout the hospital stay can help with assessing readiness. Many children really begin to feel happy again once they are home and away from the hospital environment. Helping patients balance the emotional happiness of discharge with continued fears of being home with a VAD will be more successful if early signs of excessive anxiety and depression are validated by the caregivers. Quick recognition and supportive treatment for these issues will help with transitions home.
Once the day of hospital discharge arrives, it is a time to celebrate and cheer on the patient and caregivers as they take on this new life with a VAD. In order for hospital discharge to happen, and be successful, it is important to have a checklist that the multidisciplinary team has access to understand the goals and needs before sending the patient home. Essential items of the checklist include education, excursions, home care supplies obtained including medicines, community notification and education, and patient medical readiness. It can take time to obtain needed home equipment such as dressing supplies, or home therapies, so this process needs to begin early in the planning process. Education also takes time and needs to be planned out in order to help determine a potential completion date and coordinate that with possible patient discharge. Creation of a timeline for these discharge needs is helpful for the entire team and can help motivate different parts of the discharge process. See Table 3 for an example of a discharge checklist.
Obstacles to Getting Discharged
As stated earlier, one of the great benefits of the internal VADs is the ability to leave the hospital and enjoy life at home. Daily life that now can be enjoyed at home in absence of living with symptoms of heart failure. Some centers have a high rate of discharge home with a VAD, whereas other centers have not. A PediMACS (international registry for pediatric VADs) reported a 45% discharge rate that included 109 children from 35 contributing centers.3 Another multicenter study of nine pediatric centers had a cumulative VAD discharge rate of 60%.1. Additionally, a single center demonstrated a 82% VAD discharge rate.4 Some patients may not meet the criteria to get home. For instance, if an external right ventricular assist device is in use or if the ongoing medical needs are not suitable for home management. Occasionally, patients will get transplanted before scheduled discharge. Obstacles for discharge in patients who meet criteria but are kept inpatient can involve lack of comfort and experience from the inpatient teams, lack of support for 24/7 on call for VAD outpatients, potential concerns of VAD patients living too far from the implanting center, and psychosocial concerns in the home environment. Additionally, development of an outpatient VAD clinic can be viewed as an overwhelming task.
Transition From Hospital to Home
Transitions from hospital to home with a VAD can be filled with anxiety and happiness. Some families may benefit by staying near the hospital for some days if they live far from the implanting center. This can be a nice way to offer independence while supporting them with close access to the hospital. Reinforcing with the family that if any VAD or patient concerns arise, a member of the VAD team is available at any time and is just a phone call away. Assessing each patient and supporting the family with decisions regarding transitions home will ease some of the apprehension associated with independent care of the child with a VAD.
Outpatient VAD Clinic
Once families are home, routine, clearly communicated clinic visit schedules with the implanting center will need to occur. Generally, clinic visits will involve lab draws of anticoagulation levels, complete blood counts, electrolytes, hemolysis surveillance, and any other needed laboratory data. Vital signs with Doppler mean arterial pressure (MAP’s), weights, and full physical assessments will occur. Frequency of scheduled echocardiograms will be center specific and based on clinical need. In addition, driveline site assessment or discussion of any concerns with the site will occur. Finally, interrogation of the VAD to include downloading log files for alarm and waveform review will complete the VAD performance assessment necessary for the clinic visit. Some centers have incorporated their outpatient VAD patients into their heart failure clinic with the addition of the support of a designated VAD specialist or coordinator.
Families that live far from the implanting hospital may have opportunity to entertain the shared care model with their local hospital. This will depend on the interest and resources of the local hospital, which will need some VAD education to be able to potentially share the care of these patients. Alternating monthly visits between the two centers can lessen the travel burden for families and also provide reassurance that their local hospital will get to know their child with a VAD. Early inclusion of the child’s local cardiologist and pediatrician will continue to help support a child in their community. Contacting these physicians and collaborating on a VAD education plan that can work will contribute to the medical support of the child.
Rehabilitation at Home
Depending on the length of rehabilitation needed for patients, structured rehab may need to continue at home. Working closely with therapy services and supporting them to see pediatric VAD patients will help the child and family continue to move forward with building their strength. Physical activity is always encouraged, but some activities that the child may of previous been allowed to do may not be allowed with a VAD. Any activity that can put unnecessary risk to harm VAD equipment should be avoided. When discussing this with patients and families, remind them that usually these activity limitations are temporary. Most children are bridging to transplant, to get them there safely, contact sports and risky physical activities should be avoided. Finding new fun ways to be active will support their rehabilitation needs.
Home Monitoring Systems
Some implanting hospitals have a home monitoring program that is customized for VAD patients. In these times where everyone is using technology, these programs can be easily accepted, especially by the teenage population. These programs can potentially fill the gaps between clinic visits and can take the place of written daily logs. In absence of electronic monitoring, it is necessary for patients to keep some form of daily logs. Data entered will be specific to the institution, in general, data may include daily weights, VAD parameters, blood pressure, temperatures, driveline concerns, and any VAD alarms.
Dressing changes will occur at home, teaching parents the dressing change process and signs and symptoms of infection will need to occur while the child is inpatient. Having the support for the parents while they are learning will ease the transition to home care. Many centers will have the dressing supplies delivered to the child’s home through home care services. Photographs of driveline sites sent to the VAD team can be very useful in time communication and treatment for concerns of driveline infection.
As mentioned previously, a cornerstone to successful VAD placement in the outpatient arena occurs with multidimensional training to include not only direct family care givers but also other adults who will come into contact with these special patients. The transition to home and community rely on several elements for success, which also include emergency care, inhospital and on-scene personnel, school personnel, and any other systems that patients attend.
The implanting center should have their emergency department (ED) familiar with this device in the event their patient is admitted. In addition, a process should be in place for notifying in-house personnel to respond to the ED.
Opportunity to educate EDs closest to the family home and school are elements for community VAD support success. This notification and basic understanding of the device, and care of the VAD patient, will create the best situation in the event a VAD patient is brought into their ED. Many county and area emergency medical service (EMS) protocols state for critically ill or cardiac arresting patients must be taken to the nearest emergency room. For this reason, it is best to provide full understanding for these ED colleagues to understand the type of care and processes needed for these patients.
Very similar to emergency departments, EMS is an extension to inhospital care and should be enlightened to understanding how to manage a VAD patient when they respond to a 9-1-1 call. Most EMS services utilize a web-based information to preidentify a VAD patients home address of phone number that, when called, can anticipate a VAD patient in need. The implant center should develop informational relationships with the EMS service and provide specific training to those units that could respond to the home or school. Simulation-based VAD training for this group is an important part for EMS to better understand the types of calls they might receive and how best to handle situations in the field. These could be low flow or high watts alarm, signs of stroke, bleeding, or something more tenuous such as arrhythmia management. Any form of review that could help promote improved care of the VAD patient in urgent need is helpful and builds relationships in the EMS community.
Emergency care is a logical place to start in preparing for the pediatric VAD patient to go home; additionally, prehome arrangement for utility company notification is needed. Most electric companies have policy regarding residents that are electrically dependent on medical equipment for home, and it is important not forget the VAD in this category. Utility companies provide an added level of safety that can include advanced notification of elective power outages, generators for extended power outages, preferred power restoration services, if available, and past due payment waivers. The VAD Coordinator should ensure that themselves or the family contact the power company and inform them of the electrically dependent child, which generally includes a form to complete identifying the specifics for this patients address, medical device, and emergency contact information. Patients and families should also be instructed to use their resources in the event of power failure. These resources include maintaining batteries fully charged and keep the car fuel level greater than half full so they can run the pump with the car adaptor and drive to the hospital or other area where electrical power is available during the outage.
Transition Back to School
The need for school preparation to accept the newly implanted VAD patient is essential if the patient is to return to the classroom. Most pediatric patients were involved in school programs before their need for a VAD. Because one functionality of an internal VAD is to return the patient to as normal and quality of life as before the VAD, then getting the patient back to the routine of school is beneficial.
Each school system may have a variety of processes in handling medical device-dependent students. Because VAD is fairly uncommon, it is important to meet the school administration, faculty, and nurses who would come into contact the pediatric VAD patient. Developing a school action plan will assist both the VAD Coordinator and school system in understanding how the patient will be cared for during school hours and leaves no questions about responding to various concerns that may occur during the day.
Once the school is informed of the device and care plans are created, then training can begin with several identified adults who interact on a daily basis with the VAD patient. These are usually the patient’s teachers, school nurse, and administrators such as a principal. The main teaching points include battery and controller changes, identifying alarms, and how to respond to other concerns such signs of stroke, and bleeding. In addition, important numbers and contacts in the event they have concerns or questions.
As with any school, field trips and activities are part of the experience, so direct communication with family and school faculty is important to understand where the patient is going and what they will be doing on those outings. Safety is the utmost priority for these younger patients as they may not always make the correct decisions on activities based on their age and maturity level.
Extended traveling from home would seem impossible; however, it can be reality for patients to enjoy travel with appropriate preparations. The family must work with the VAD Coordinator to assist in providing the safest travel plan for the patient. These plans include proper assessment of training skills, functioning equipment, and assurance that power and electrical systems are appropriate to accommodate the patient needs. In addition, contacting the airline and providing a letter for transportation Safety Board (TSA) stating the specifics of the device and need to carry-on equipment with the patient should flying be the travel option. The VAD Coordinator must also communicate with the VAD center in the area which the patient plans to travel. This communication is essential to minimize confusion should the VAD patient be admitted during their travel. It is not recommended that VAD patients travel to areas that do not support the needs of the patient. Lastly, the patient and family needs to understand the process for leaving the area in regards to their listing for heart transplantation. Patients should discuss and understand these issues with their medical team.
Although traveling away from home and the implanting center seem possible, the enforcement of certain restrictions becomes challenging in the pediatric VAD patient and especially is challenging in the young adult who could take liberties in their freedom. Each clinic visit and before any outing should be an opportunity for the VAD Coordinator to review the “do’s and don’ts.” These might include getting equipment wet, taking risks with battery life, forgetting back-up equipment, physical exertion beyond the tolerable threshold, drugs, and alcohol.
In summary, the goal for pediatric VAD patient integration back into their communities is to provide a high quality of life. The challenges, and ultimately success, for outpatient VAD management relies on the continued collaboration, communication, education, and flexibility for all those who may possibly come into regular or emergent contact with these unique young patients.