Tuesday, January 10, 2017

Doctor says we need to give parents space to go 'off script'

By Louise Kinross

A year ago, Dr. Mohammad Zubairi was hired as a developmental pediatrician at Holland Bloorview after completing his fellowship training here. Most days now he’s doing assessments with young children and sharing the diagnosis of autism with their parents. Mohammad’s family has roots in Pakistan, where his grandfather was a doctor who dedicated one day a week to seeing poor patients at subsidized rates. Mohammad grew up in Canada and Saudia Arabia, where his mother was a doctor. He’s interested in how developmental pediatricians work with families who have “values, beliefs and thought patterns different than our own.” He aims to understand families from a big picture perspective that goes beyond the medical.

BLOOM: Why did you want to work with kids?

Mohammad Zubairi:
It’s an opportunity to be silly. I grew up in a household with a sibling who was 10 years younger than me, so I was used to that dynamic. Children are always surprising you, and because they surprise they open up doors where you can learn about them. That excites me. The other thing that struck me as a medical student was that kids have a certain resilience we don’t often appreciate in other patient groups.

BLOOM: How did you get into developmental pediatrics?

Mohammad Zubairi:
When I was going through pediatrics training at McMaster University I was paired with a mentor who was a developmental pediatrician. There was something about working collaboratively with a number of different health professionals in this field that really intrigued me. I had always been interested in psychology and brain development and when I came to pediatrics I was looking for a field that would allow me to bridge those interests. Developmental pediatrics struck a balance between doing medical assessments and incorporating a fair bit of thinking broadly about how we develop and interact with the world around us.

BLOOM: What do you like about your work with children and families?

Mohammad Zubairi:
I’m aware, from speaking to families, that it’s a very fragmented system outside. What I try to do is equip families with resources or tools or strategies to help navigate that real world. Empowering families in that way is where my satisfaction comes from.

BLOOM: What might be in the tool kit you give families?

Mohammad Zubairi:
I tailor a number of resources that I pick and choose for each family. It could be something as simple as a particular website that highlights information and strategies that families and schools can use to help children with attention difficulties. I don’t want to overwhelm families, so I wait until I see them three to six months later to add in additional resources.

BLOOM: What are the challenges of your work?

Mohammad Zubairi:
The conversations we have are difficult, partly because of the nature of developmental pediatrics. Although we’re trying to standardize the tools we use, there’s still a subjective nature to it. It’s not like ‘Look here, you’ve got a rash, what can we do about it?’ Often the things we’re dealing with are hidden: we’re trying to uncover challenges that may not be immediately apparent to families or other care providers. We run into scenarios where we have to help families cope in the moment with hearing news that they may not have expected, or that they may not know how to deal with. As a clinician, you may have had a difficult conversation with the first family you saw, but you have to go in to see the next family with a clear mind.

BLOOM: How many families would you see on the days you’re doing assessments?

Mohammad Zubairi:
I’m in clinic three and a half days a week, and I’d see four to six families a day, some of them new, and some for follow-up. It can be challenging to shift gears from one family to the next.

BLOOM: What’s it like to work in this field emotionally?

Mohammad Zubairi
: We want to always prioritize being there for the family, so we don't always express our own emotions in the clinical encounters. That can take a toll later on.

BLOOM: What specific emotions might you feel?

Mohammad Zubairi:
Sometimes there’s a feeling of anxiety, of what is this going to mean for the family and how will they respond to this information? There may be a sense of guilt about whether we’ve spent enough time getting to know that family’s story. Sometimes we prioritize the medical piece at the expense of thinking of the bigger picture. What really matters to me is the bigger picture, partly because there aren’t quick fixes or cures in the traditional sense, and being able to convey that to families requires an understanding of the family that goes beyond the diagnosis. You want to be able to convey information in a way that will be meaningful and useful to that family and meet them where they are.

BLOOM: But don’t you ever feel guilty because you’re conveying upsetting news?

Mohammad Zubairi:
Yes, I would say that historically I had to deal with feelings of guilt in conveying difficult news. But this guilt has transformed into thinking about how to best empower families to navigate systems when their child may have developmental difficulties—whether that’s in the form of writing a letter of support, speaking to another professional, or helping the family connect with culturally-appropriate resources.

BLOOM: It must be very challenging for clinicians because what one parent finds helpful in terms of how a doctor shares a diagnosis another parent may find hurtful. People can interpret things very differently, and you don’t know how they’re going to respond going in.

Mohammad Zubairi:
Every family, up until they get to Bloorview, has had a story and experiences that have informed them and then we, as clinicians, may allow for some things to be said, or not said, based on the messaging we give. So, for example, we give the message that there’s easy access to interpreters if language is a barrier. But is that enough? What if there’s something beyond the language piece—something that we don’t understand in terms of culture, value systems or beliefs? Sometimes we pay attention to the medical piece, but time doesn’t really permit us to get into these other discussions.

BLOOM: Why did you decide to become a doctor?

Mohammad Zubairi:
I had learned that doctors were essentially teachers. In Latin, the word doctor comes from the concept of a teacher. I was always interested in education and I knew I wanted to do some teaching that was not necessarily to students, but in work with families. I have a number of physicians in my family.

My grandfather, when he was a physician decades ago in Pakistan, did what would be considered social medicine—thinking beyond the medical piece to the psychosocial variables that affect a child’s development, health and wellbeing. There are pictures of long line ups of people waiting to see him on the day he dedicated each week to folks who wouldn’t otherwise have access to healthcare. Instead of just seeing the wealthy who could afford regular rates, he chose to offer subsidized rates. My mother is a physician also, and practised in the Middle East. I spent my first six years in Canada and then eight or nine years in Saudi Arabia before moving back to Canada in Grade 10.

BLOOM: How does your experience in different countries influence your practice?

Mohammad Zubairi:
The fact that my family’s roots are in Pakistan, and that I’ve spent time between Canada and the Middle East and interacted with people with all sorts of experiences, has shaped me and my ability to engage with families. Here at Holland Bloorview I’ve got the lovely ladies at Tim Horton’s teaching me a few words in Tagalog, from the Philippines. I might use a few words as an ice breaker with a family, to help them feel comfortable. I’ve developed an appreciation for diverse experiences.

BLOOM: I understand you and Dr. Anne Kawamura have been incorporating storytelling into your clinical work.

Mohammad Zubairi: The idea is that we go into an encounter with a certain approach and families come with their own thinking and beliefs and values and information that they want to share. Sometimes the two allign and sometimes they don’t. We’re not talking about asking directly ‘What is your story?’ but thinking about how we respond as clinicians when there are shifts in the narrative away from the medical piece.

So if a family shares information about something stressful that is going on in their life, do we acknowledge and respond to it? Or do we give it some lip service and then put the blinders back on? Medicine has evolved to be algorithmic. There are criteria you need to identify and parameters you need to look for. That means you may not pay attention to other pieces of information the family shares. It’s one thing coming to a diagnosis and it’s another coming to a diagnosis with an understanding of the family. And sometimes they can be at odds with one another. That is where I think understanding can come through storytelling. I haven’t used it a lot in my clinical practice but I’d like to. I think storytelling can be a gateway to better understanding families.

BLOOM: Can you give an example of something a doctor might miss because they’re over-focused on the medical picture?

Mohammad Zubairi:
I remember with a recent family I had a trainee spend a whole hour gathering data about a young child with very complex medical needs. At the end, we began discussing the idea of cerebral palsy—and very quickly the mom started sharing things about her belief system and the role religion played in her life and her understanding of her child and the child’s progress. I was surprised, and so was the trainee, that none of this had come out because we were so focused on trying to understand the child medically. I’m interested in the culture of how we encourage, or don’t encourage, families to share that type of information. By hearing family stories we can situate a diagnosis within the big picture of the family and also identify what is important to them over time.

BLOOM: Do you do anything to help you cope with challenging emotions?

Mohammad Zubairi: When I was a trainee I used to go home to my wife and say ‘Oh my goodness, there was another parent who cried today.’ I associated a parent crying with something about the way I was sharing information—that I was somehow bringing those emotions out. Of course those emotions are natural reactions to hearing difficult news.

In between cases now I will go back to my office and take a couple of moments and deep breaths and try to finish up anything with the prior child before going on to the next child. I also do a bit of self cognitive therapy. I tell myself ‘I’m going in to see the next family to help them’ and it’s as simple as saying that. The new family might come in very stressed, and I may have been stressed due to the last scenario, but because we’re here to help, let’s take this mindset.

Outside of work I do a lot of hand drumming to destress—I used to play in a band back in the day. I also play sports—like squash or tennis when the weather isn’t as cold—and sometimes I read non-medical books.

BLOOM: Do doctors here ever talk about some of the difficult emotions they experience?

Mohammad Zubairi:
There aren’t many spaces outside of the immediate clinical encounter. If I’m working with a speech pathologist or trainee I may bring out into the open the challenging nature of the case as that’s a good avenue to learn from it. As clinicians, we often struggle with similar types of issues or difficulties. At the same time, there can be an emotional drain that you take, so having the space to talk about that in broader clinician groups would be useful.

BLOOM: Can you tell us about your research?

Mohammad Zubairi: I have a masters in health professions education and I’m interested in reflective practice and the use of simulations. My current work is looking at how developmental pediatricians engage in cultural encounters—so how we engage with values, beliefs and thought patterns that are different than ours.

BLOOM: Why is that needed?

Mohammad Zubairi: Because we live in a multicultural context there are assumptions that we automatically take that into consideration when engaging with families. But we don’t have the data or evidence to show if we are truly addressing issues that relate to a patient’s culture. Every family unit has their own culture. Sometimes we fall back on thinking only about ethnic or religious culture. Cultural ways of thinking about disability have implications for our relationships with families and for how they use the recommendations we make. I’m doing qualitative research about how we can best train developmental pediatricians to engage in these encounters.