Caring for Children Who Are Mechanically Dependent
In this podcast, Traci Gonzales, MSN, APRN, CPNP-PC, talks about caring for children who are mechanically dependent, including keeping them safe, the biggest challenges for primary care providers, and emergencies that can arise while caring for a child who is mechanically dependent.
- Kuhn BT, Nguyen J, Kenyon NJ, Adams JY. Pitfalls in the management of mechanical ventilation: ARDS and hypermetabolic states. Consultant. 2017;57(5):289-292,295. https://www.consultant360.com/articles/pitfalls-management-mechanical-ventilation-ards-and-hypermetabolic-states
- Sterni LM, Collaco JM, Baker CD, ATS Pediatric Chronic Home Ventilation Workgroup, et al. An official American Thoracic Society clinical practice guideline: pediatric chronic home invasive ventilation. Am J Respir Crit Care Med. April 2016;193(8):e16-35. https://doi.org/10.1164/rccm.201602-0276st
Traci Gonzales, MSN, APRN, CPNP-PC, is a pediatric nurse practitioner at the Complex Care Clinic at Texas Children’s hospital in Houston Texas and a national spokesperson for the American Lung Association.
Jessica Bard: Hello, everyone, and welcome to another installment of "Podcast360," your go‑to resource for medical news and clinical updates. On your moderator, Jessica Bard, with Consultant360 Specialty Network.
Supporting a child's breathing with a ventilator at home can be challenging and requires a team approach to care. Traci Gonzalez is here to speak with us about caring for children who are mechanically dependent.
Traci is a pediatric nurse practitioner at the Complex Care Clinic at Texas Children's Hospital in Houston, Texas, and a national spokesperson for the American Lung Association. Thank you for joining us today.
What are the biggest challenges for primary care providers in taking care of a child who is mechanically dependent?
Traci Gonzales, MSN, APRN, CPNP-PC: One of the biggest challenges that we face is care coordination. These children require in‑home nursing, multiple therapies, medical equipment in the home, monthly supplies, medications, and it's just an endless list.There are so many working parts behind the scenes that ensure that they're well taken care of in the home. On top of that, most will see multiple specialists along with their PCP, and they're going to get a flood of information from each provider they see, and the cybering that can be difficult for a parent.
Another barrier that we, unfortunately, face a lot is just the overall availability of providers who want to work in the field. It's a tough field. We work with a lot of sick children with complex medical needs. It is with so many fields of medicine, right now. We see a decent amount of burnout. I rather think it's a decent amount of what we call compassion fatigue. We struggle to not only find providers at a PCP level, we struggle to also find subspecialists, particularly if you're in a more rural community without ready access to a larger medical system. We, again, address this as they grow across the lifespan because we also face difficulty finding adult providers that we can transition our children to once they hit that 21‑year mark.
Jessica Bard: What are the best practices to ensure patient safety when caring for a child who is mechanically dependent?
Traci Gonzales: When I think of safety, I think of it in two parts. One being the acute emergency situations, which we're going to talk about in a bit. The other is reflective of the long‑term care provided. Care coordination is, again, one of the biggest components to ensuring that we are safely caring for these fragile children. Studies have shown that children with medical complexity, they're going to benefit from being seen in a clinic that provides comprehensive, compassionate, and coordinated care. For example, in our own clinic. Each patient has a primary care provider. They also have the care coordination team and then they have access to a dietician and a social worker.
As a PCP, we help coordinate their overall care, along with the typical PCP roles of managing their acute illnesses and then also their routine child care. We typically see our kids every three months, sooner if needed. At that visit, we review all diagnoses, all the specialist notes, all the hospitalizations, labs, diagnostic text. Overall, we're evaluating if anything is missing from their care. What has been found is if a child or a patient sees multiple specialists, but not a PCP to help put it all together, their care can become very fragmented. Fragmented care can lead to worse outcomes in this population, particularly if they're seeing specialists across different organizations because the specialist can't see each other's notes either. There's a big risk for polypharmacy or the risk of other complications can increase.
Within our clinic, they have their PCP, and then they also have their care coordination team. That team consists of an RN and what we call a patient navigator. This team helps with all the paperwork, all the orders, the therapies, the nursing, all of those things that help keep the kid in the home and not in the hospital. You would be amazed at the amount of paperwork it takes for each child to receive these services in the home. We have around 1,400 to 1,500 patients. We get faxes all day long, so many faxes, so many papers to sign. This time they are imperative to the outpatient care and the overall safety of these kids in their home.
Of course, access to a social worker is vital. There have been multiple studies that have looked at the financial ramifications of having a medically complex child in the home. They've looked at the divorce rate and then the overall mental health of these families. These are very real problems that we see every day. As providers, we know that in order for our parents to be able to care for their kids, we have to address these root problems. If a family is worried, where their next meal is going to come from and their ability to care for their medically fragile child, it's going to be affected.
Jessica Bard: What types of emergencies can arise when caring for a child who is mechanically dependent? What should a clinician do to be prepared for those emergencies?
Traci Gonzales: Children who are dependent on breaks and events, of course, can be incredibly fragile and multiple different types of emergencies can arise very quickly, whether they're coming in sick, and so they've got acute on chronic respiratory failure, whether the machine is malfunctioning, the trach is plugged, the trach is out. No matter the cause, when you can't breathe, nothing else matters. As clinicians, we should take precautions to ensure that we have all the necessary supplies to intervene in such emergencies. Access to an Ambu bag, to oxygen, into suction, they're vital. They're absolutely lifesaving, you have to have these at the bedside. Extra trachs and a crash cart or an added bonus. We are lucky to have those in our clinic, but, of course, I understand it's not feasible that all clinics can have backup drugs and crash cards.
While the equipment required for pulmonary resuscitation, that Ambu bag, that oxygen, they're a good starting point. As providers, there's no way we can anticipate every event that we're going to run into. It's equally important that you routinely reflect on your practice and you evaluate for opportunities to improve patient safety. If there are emergent events, always stop and have a debrief afterward, see what worked well, see what could have been better, and then actually make changes in your process to incorporate the better.
We've had a few examples in our own clinic. One of those as we implemented a trach checklist. What we found was that although we regularly provided education and emphasize the importance of always having the emergency trach kit with them, which of course, would include their Ambu bag, their bag of trachs, their section, families were still routinely traveling without it. There is multiple reasons for this, but we ran into some situations where the kids showed up to the clinic and we needed those supplies right then, they were acutely sick and we needed to start bagging. Luckily, being in the clinic, we had access to the supplies. If this happened somewhere else in the hallway, in a car, somewhere else, the outcomes of that situation would have been very different.
Traci Gonzales: Now, every child who has a trach, who comes for every visit, get a trach audit. There is a form with a checklist with all of the required things that we would expect for them to have in their emergency kit. At the visit, either an RN or an RT goes over that form and checks out that they have everything with them. If they don't have the vital supplies, such an Ambu bag or a backup trach, we'll ensure that we get them to the patient before they leave the clinic so that they can leave here safer than they came here. We've seen a big increase in compliance since we started using this form. To the point now where a lot of times, I'll walk in a room and the nurse or the family will already have everything laid out for me to check it because they know we're going to ask for it. I do think it's definitely brought more to the forefront of their minds to be prepared. We also recently added a respiratory therapist to our staff and those of us who work in pulmonary medicine or we take care of children with chronic residuary needs. We all know and understand how valuable and knowledgeable respiratory therapist [RT] is. Our RT sees every trach vent child, and then she also sees any additional kids that we feel would benefit and muscular dystrophy, any kind of neuromuscular condition, asthma, anyone that we think would benefit from her evaluation. She provides education. She can check and troubleshoot our equipment, and she also assists in emergencies. Again, that goes back to, if you've worked in this field, you know that in an emergency or respiratory emergency, a good RT is just invaluable. She also will call our patients, which is great, because she can call and talk to patients over the phone. She can troubleshoot with some of the home equipment that I might not know as well, but available in the home. She can really help the patients out over the phone.
Jessica Bard: How has caring for a child who is mechanically dependent changed during the COVID‑19 pandemic? How are clinicians using telehealth to care for their pediatric patients who are mechanically dependent?
Traci Gonzales: Care has definitely looked different over the last year. Many of these families already have overwhelming fear and often they have PTSD from everything they've gone through with their child's health. We've definitely seen a rise in that fear and anxiety. Families have been incredibly hesitant to bring the children out for anything, including clinic visits, well‑child checks, vaccines. Many families have also started refusing private duty nursing, or in‑home therapies, just out of that fear that someone's going to bring COVID into the home. This, in turn, means that the parents are responsible for 24‑hour care on top of their regular responsibilities.
Many of our patients require medications, breathing treatments, and beats throughout the night. We're not talking kids who are awake during the day and there's just nothing to do but let them sleep at night. Many of these kids require bedside care 24 hours a day. We've had parents, lost sleep, lose jobs. Unfortunately, we've also seen some lose spouses or their loved ones to COVID, which adds even more stress and more anxiety. For many families, not only has there been extra fear about contracting COVID then there was also this extra stressed, as they were left with less help in the home. As a result, they become socially isolated.
All of this has led to an increase in our concern over the mental well‑being of our families and our patients, too. We're very acutely aware of this and the potential that it's setting up situations in which there can be an increased risk for error or just for general noncompliance.As for telehealth, along with health care providers just across the world, we had to adapt our practice over the year. Telehealth, actually, become an important component, I feel now of the care that we're providing. I love getting to see the kids in their home setting.
Traci Gonzales:Oftentimes when kids come to the clinic, they're not excited to be here. They associate this with the hospital and they don't want to be there. Some of them come here and they're mad at us. Some of them just don't do well with transport. Some of them don't like their HMO or their travel circuit.Some can't regulate temperature and some literally, just come and act like they're sleeping the whole visit because they want nothing to do with us here.We don't always get to see the kid who is at home. Mom and dad will tell us what the kid does at home, but I don't ever get to see that. That part has been nice because to get to see them in their home, in their comfort zone. When I'm looking at developmental things, I'm looking for eye tracking in my visit while they fake sleeping on me because they don't want to be here. If I see them at home when they're awake and I can see them tracking mom or they see them tracking me on the screen, it's been very enjoyable to see that part of it.
As far as just more specific for mechanical devices and ventilators, it is easy to see the work of breathing, which is great with the video. You can see the ventilator ‑‑ The ventilators now have all of the readings are easy to see ‑‑ you can tell how they're working with the vent. Easy to make adjustments if needed.
Overall, many of us still...It's a balance, we do like to see our kids in person. We've gone into this to take care of kids. We like to listen and do a physical exam, but telehealth is definitely stepped up and it's become a very important part of the care. For the foreseeable future, telehealth will continue to be and to have a big role in this population.
Jessica Bard: What are the take‑home messages for primary care providers from our discussion today would you say?
Traci Gonzales: There are three things that you can take from this talk. I would want you to remember that the importance of comprehensive care and effective communication between both providers, subspecialist and primary care providers, and the families, to continually look for ways that you can improve and ensure that we're providing the absolute safest care both in our clinics but also in the patient's home.
Three, make sure that we're taking care of the whole patient. Medical, mental and social care are all vitally important in this population.
Jessica Bard: Is there anything else you'd like to add that we missed?
Traci Gonzales: I would hope that we would reflect and remember that as clinicians we get years of training to take care of this level of a child. Our families often get weeks to a month. Never forget what we're asking, when we ask a family to take a child into their home. That in years past would have never left the NICU. These children and their families are some of the strongest and absolutely most resilient people that I've ever had the pleasure of working with.
Jessica Bard: Thank you for joining us today, Traci. We learned a lot. This is a really important topic.
Traci Gonzales: I want to thank you for the opportunity and all of those that are listening, and I hope that, what we've talked about today, you can take forward and implement in your practice and as you take care of this great group of children.
Published in partnership with the American Lung Association in New Jersey