Thursday, March 9, 2017

'The goals of the family direct where we go'

By Louise Kinross

Erin Brandon is one of seven nurse practitioners at Holland Bloorview. She runs two clinics—one for families of children with cerebral palsy and complex medical needs and one for families of girls with Rett syndrome. Her appointments last up to two hours and include comprehensive medical assessments, community resource planning and troubleshooting and the emotional support that enables families to care for children with high needs at home, rather than in the hospital.

Erin came to Holland Bloorview in 2014 after spending a year in the complex care unit at SickKids Hospital. 
There’s something about these kids and their families that really struck me,’ Erin says. ‘There was an openness. I felt I was included as part of the family. I felt like I had an impact on their overall quality of life.’

BLOOM: How did you get into this field?

Erin Brandon: My mother always told me I should be a nurse. She said I was very caring and nursing would be an area that I would excel in. She had an inkling and she was absolutely right. At first I worked in general surgery at SickKids. Nursing brings an inclusiveness and an intimacy with the care you provide. I had also worked as an undergraduate at Sunnybrook in cardiology and met a couple of the nurse practitioners there. I was in awe of the dynamic they added to the health care team: the direct patient care, the clinical management, and the medical management. I felt that in the role of the nurse practitioner I could do a little bit extra for a family.

BLOOM: What is a typical day like?

Erin Brandon: There are never typical days! I am constantly learning new things from families and kids. If it’s a clinic day I usually have two appointments that can last up to two hours each. I do a comprehensive head-to-toe assessment and we try our best to cover every area of care. The goals of the family direct where we go. We talk about community resources, goals for functional abilities, medical concerns, family dynamics and long-term planning. These children are always going to need 24-hour support so you can’t just focus on the medical—it has to be everything. In-between assessments I get six to 20 calls a day from families in the community who need support. I provide triage to families if their child has a fever and isn’t eating and they’re trying to determine whether to take their child to emergency or a pediatrician. These families are very good at advocating for their children and they know their kids better than anyone, but at times providing a bit of reassurance and support to know they're doing the right thing helps to boost their confidence.

I work with schools, home care resources and other pediatricians to try to make the continuity of care better and break down barriers outside these walls.

BLOOM: I think every family could benefit from a nurse practitioner!

Erin Brandon: Any family can benefit from having the coordination and support, but as our resources are limited, we typically get involved when there are a lot of things falling through the cracks and they need extra support.

BLOOM: What’s challenging about this work?

Erin Brandon: One of the amazing things about Holland Bloorview is the opportunities to get involved—in research or program management or even in the strategic plan. Sometimes it’s a challenge not to get pulled in too many directions. I want to provide very good quality care to the families and that takes time. One common question that I get is 'Why didn't you become a physician?' I love being a nurse and being a nurse practitioner allows me to have the connection, flexibility and time to spend with families that I wouldn't have in another role. That helps me do the job that I do. There are so many pressures on these families, so many targets they need to look after and meet. I’m there to help them prioritize what is most important to them at this time, and what can wait.

BLOOM: And to give them permission to wait. I was just reading an article about the invisible work of patients—about how we expect so much from families, and then when they don’t get some of the tasks done, we tend to say they’re not following through or not being compliant.

Erin Brandon:
Nursing has helped me so much in a medical world. When a family’s world has medical complexity, we’re very good at making work and identifying problems that need to be fixed. But as nurses, we’ve always been taught that the client and family is at the centre of everything. They’re the expert at what they want in their life. Listening to families helps to direct the medical piece, so that it fits into their life rather than standing outside of it.

BLOOM: Yes, so the family isn’t shoved into an idea of what other people think is ideal for them.

Erin Brandon: I can give a solution or identify next steps, but if that doesn’t fit with a family’s goals, why are we taking these steps? A good portion of what I do is taking this guilt away from families. There’s so much pressure on them. It needs to be about what they need, rather than what my recommendations are.

BLOOM: How do you manage the emotions that come with your job?

Erin Brandon: This is the most humbling role I’ve ever had, because of how open families are with me. There are times when you take it home, I don’t know how you couldn’t. There are days when I cry with families. But I cry in the losses and the successes. These families include me as an extension of their family, which is the biggest honour. And the successes, no matter how big or small, always outweigh the loss for me.

I also have a very supportive team here, which includes physicians, therapists, nurses, nurse practitioners and managers. I can talk to them to work things through when I need to.

BLOOM: So you talk to one of them if you’re having a difficult situation with a family?

Erin Brandon: You have to. I think there are things that happen with children with medical complexity that no one can anticipate.

BLOOM: What do you love about your job?

Erin Brandon: It’s so hard to describe. It’s the kids. And the families. I’ve had conversations in clinic that I don’t think these families open up to other people about. And to have that connection with a family is the most rewarding thing you can ever have. When I was in general surgery, a family may come in and go home, and you may not see them again. In this work, to see the growth of a family and a child over their life span is an incredible gift. That’s one of the things that drew me here and to complex care.

BLOOM: What have you learned from families?

Erin Brandon: One of the biggest things I’ve learned is that everyone is different, no matter what their diagnosis. The other thing every single family has taught me is that no matter whether they’re flailing or they have it all pulled together, there is a huge amount of stress that they come with every day, just to walk out the door.

BLOOM: Have you changed?

Erin Brandon:
I was very medically focused when I came here. I feel that families have opened me up to so many other possibilities. They’ve taught me what is important to them and that the medical part is not always the most important part of their lives. Perhaps the parent just needs to talk about something that’s happened, because to them, they can’t get past it until they’ve talked about it. For me to be in an environment where I have that flexibility to support families in this way is fabulous. I also have the option of saying ‘We have a lot to discuss today, maybe we should also meet again?’

BLOOM: If you could change one thing in health care, what would it be?

Erin Brandon: We’ve got so many great organizations in Toronto but they all have different systems and set-ups. We need to break down those walls. Why do we need a medical record at every single facility? Why not just one system across facilities, so everyone is connected? One thing that frustrates me is the money comes from the same spot—the government. We’ve created this. We could make it so much easier for families if we improved our connections—even between SickKids to here and other [children’s treatment networks].