In complex care, 'no two children are the same'
By Louise Kinross
Dr. Priya Sayal is a pediatrician at Holland Bloorview working with inpatient children with illnesses or injuries that affect several parts of the body. Many rely on ventilators and feeding tubes. These children are considered fragile because they’re at high risk of getting sick or deteriorating quickly. We spoke about the joys and challenges of complex-care medicine.
BLOOM: How did you get into this field?
Priya Sayal: I was always drawn to the sciences and math at school. I liked the idea of a job that had a lot of communication with people. But honestly, a large part of it was my uncle, who is an emergency doctor at North York General Hospital, and probably my biggest inspiration. He would talk about his work and the impact that he had on people’s lives, but also about the interesting people he got to meet and the things he learned from his patients. As early as I can remember I was working towards this career.
BLOOM: What drew you to working with children?
Priya Sayal: I came in to med school open-minded, but very quickly I found myself drawn to pediatrics. I really liked interacting with parents, and I liked the variety of patient populations and age ranges.
When I got to my pediatrics rotation I felt like I had found my tribe in the colleagues, nurses, therapists and other staff on the unit. One of my mentors said that’s one of the most important things when picking a medical specialty. I liked the energy of the people who worked in pediatrics and felt like I fit in. I wanted people like that to be my co-workers.
My first research job was with the long-term ventilation program at SickKids Hospital, and that was my first introduction to children with medical complexity and their families.
BLOOM: What was that like?
Priya Sayal: Initially it was incredibly overwhelming. I remember feeling scared the first time I walked into a room with a child dependent on technology to live. I hadn’t interacted with someone like that in my regular life before. I was frightened about saying the wrong thing or behaving in the wrong way. I quickly realized through my clinical encounters that this is a very special population.
There are several things I love about it. The medicine itself is very interesting. Many kids we follow here have diseases or injuries that affect multiple body systems, and the way that interacts can look very different. No two children are the same. They may have an underlying genetic condition or they’ve had an accident or injury.
I like that from a medical standpoint there’s a lot of trial and error. There aren’t studies that have looked at trying a drug for a symptom in thousands of kids with a particular syndrome. So we work with families based on the evidence that exists and our own clinical experience.
There’s a strong quality-of-life component to the care we provide. If you’re a child with a life-limiting illness, that comes with a certain degree of fragility and unknowns. Even though a child may not be near the end of their life, we emphasize what’s feasible for the family and what the child would enjoy when making medical decisions.
BLOOM: What is a typical day like?
Priya Sayal: Typically our team rounds at 9 a.m. We do a smaller version of multi-disciplinary rounds, so we have nursing, respiratory therapy, social work and the medical team come together. I really like that because we can discuss any issues that arose with patients during the night, and everyone can chime in and share ideas.
After rounds we see our clients and do new admissions. Most come from SickKids, but we also get kids from Hamilton, London, Kingston, Ottawa and Sudbury. We’ve already reviewed the client’s chart, and we meet the client and family and review their entire medical history, do a physical exam and talk about what the plan here will be like. We write an admission note and put all the medication and other orders into our system. This can be a long process, as many of our kids are on over 10 medications.
Mornings are also for discharges. In the afternoon we have a mix of family meetings—all clients have family meetings once a month—review new referrals as they come in, and deal with acute medical issues.
Because our kids are fragile, you could come in the morning, and the day looks very stable. But later someone could have a sudden decompensation and you’re managing them acutely and transferring them to an acute-care hospital.
BLOOM: What are the greatest challenges?
Priya Sayal: The first thing that comes to mind is the limitations of the community public system that we operate in. We have a front row seat into how complicated and high needs these kids are, and the extreme demands it puts on families.
If you look at the research, families of kids with complex medical needs have higher rates of divorce, and typically one parent must give up their career at a time when their expenses are high because the public system doesn’t cover all the medical supplies and things the child needs to survive. Not thrive, just live.
Their stay here may be delayed because the nursing supports in the community aren’t available, or because the system isn’t providing enough support.
If your child has a tracheostomy, you need 24-hour care eyes on the child. The government usually gives only eight hours of nursing support a day, and families often use it for the night. The idea is that the kids go to school with a nurse during the day, and families are responsible for mornings and after school, until the night nurse arrives. But there’s a lot of coordination to make that work and it requires lots of extra support.
When getting what they need becomes a sticking point, we try to advocate on a case-by-case basis—writing letters as a team and talking to case managers to escalate issues. But that’s not a system-level solution.
The expectations the system puts on parents are very, very high. We are expecting a lot, and we know that when we send them home. That part can be challenging for me emotionally.
BLOOM: What are the greatest joys?
Priya Sayal: Witnessing the resilience of our families. I feel very lucky I get to see it everyday. The families we care for have been through what many parents would call their worst nightmare.
We get to be part of parents’ journeys coming to terms with a new reality and learning the new version of their child. We can help them achieve a quality of life that is positive for them and aligns with their values. It’s not uncommon for a parent to hug me on discharge day, or to have tears of joy. Because when we met six months ago, going home may have seemed impossible.
BLOOM: What emotions come with your role?
Priya Sayal: We know families for a long time. I may see a family for a whole year every day, and we get attached to our families. We go through this up-and-down journey together. When families have a real moment of sadness because of something that’s happened or the system, it’s hard not to feel sad with them.
BLOOM: How do you cope with that?
Priya Sayal: I find talking to the team about challenging interactions or cases very helpful.
I might seek out another physician or therapist or nurse or social worker on the client’s team. I’ve shed tears with people on the team, and I feel it’s safe and very understood.
Over time I’ve learned to debrief more at work. I used to do a lot more talking it out at home, but I find that harder. Now I prefer to leave it here and use my time at home to fill my pot in other ways.
BLOOM: What things fill you up?
Priya Sayal: I play a lot of tennis, which is a good outlet. I love cooking and find it very meditative. During that ‘me’ time in the kitchen, everything slows down. I put on some music and I’m chopping. I don’t want help. I like being creative and coming up with recipes on my own or using what’s in the fridge.
BLOOM: What kind of care do families tell you they value?
Priya Sayal: A couple of things. They value honest care. There are times, especially in this work, where something might work, but you’re not entirely sure. Families value when you tell them what you know and what you don’t know, and how you will gather more information.
The second thing is meeting them where they’re at. Our families have been through a trauma. What their needs look like afterwards vary significantly. One of the luxuries we have here is time to get to know a family and what works well for them.
For example, we’ve had families who don’t like family meetings because it may be triggering of meetings where they got terrible news. So we come up with other ways to have important discussions. It’s being flexible.
BLOOM: If you could change one thing about how we support families of children with complex needs, what would it be?
Priya Sayal: I feel a lot of the teams that care for these families exist in their own silos. I wish we had better connections and more seamless communication with the community teams that care for our families outside of discharge.
What happens outside of these walls is a bit of a black box. I don’t have easy access to a child’s records at the family doctor, or their records at another hospital. On the electronic record, I can’t see every note from every office, or every MRI or X-ray.
We put a lot of responsibility on families to remember to tell us what other specialists or outpatient therapists or nurses or primary care have done. That creates a lot of stress and things get missed or miscommunicated. From a system efficiency standpoint, we probably duplicate some services.
For example, if I have a client that needs a hip X-ray and they had one last month, but I can’t see it, I’ll order it again. That’s not great from the family or public system’s perspective.
Our families see multiple providers over multiple sites. The fragmented nature of this from a record and service perspective is challenging.
BLOOM: Is there anything else you’d like to share?
Priya Sayal: I feel very lucky because I love my job. I came into my dream job right out of fellowship, and I love it here.
In addition to her work on Holland Bloorview's complex continuing care unit, Dr. Sayal works in our outpatient spinal bifida and spinal cord injury clinic.
