Wednesday, January 25, 2017

A mother wishes her son's cancer 'never comes back'

By Louise Kinross

Noah, 1, has blonde hair that stands up in exuberant spikes on his head. He loves to smile. When his dog licks his head, he giggles. If his mom Ivona Novak tells him not to go near an electrical outlet, he laughs and moves faster. He takes great joy in eating croissants, which he calls ‘Cru Cru.’ Only his mini-wheelchair hints at the cancer he was diagnosed with at less than three months.

Noah was successfully treated with chemotherapy. But the cancer came back in his spine, and he had to be treated again. He now has a spinal cord injury. “The doctors said they’d never seen a case of neuroblastoma like this in a kid under 18 months,” Ivona says. Recently Noah received physical, occupational and speech therapy for three months in Holland Bloorview’s day program. We talked about their journey.

BLOOM: What are Noah’s favourite things?

Ivona Novak: He likes to army crawl. He’ll take a car and hit it and then chase after it all over the house. He loves coming here. He loves attention and when people talk to him he’s all giggly and smiley. He loves Keith.

BLOOM: You mean Keith Adamson?

Ivona Novak:
Yes, he always plays with him.

BLOOM: How is Noah doing now?

Ivona Novak: He’s in remission. He has an incomplete spinal cord injury from a tumour. His chest and up is functional and he has use of his arms, but he has no functional use of his legs. Before he came to Holland Bloorview he couldn’t sit on his own, move from lying to sitting, or army crawl. He was fully dependent on me. The therapists here were fantastic at using toys to try to get him to do different things, and he’s made remarkable improvement. It’s incredible how much strength he has in his upper arms. That’s made my life easier and made him so much happier.

BLOOM: You mentioned you liked our therapeutic playroom

Ivona Novak:
It helped him become more comfortable with people. He was scared of adults because of the poking and prodding in the intensive care unit and wouldn’t let anyone else pick him up. Having adults who were just going to play with him helped him be more confident and mobile. He was able to make friends with kids who are more like him. I had been worried about how other parents and children in the community might respond to him. The playroom was a safe environment without any judgment. That experience gave me the confidence to take him to our Early Years Centre.

BLOOM: That's great. Did you have any experience with serious illness prior to Noah’s birth?

Ivona Novak: No experience. It was such a huge learning curve. I used Google so much.

One thing I learned is a parent’s intuition is better than a doctor’s. Before we knew cancer had come back, I kept saying something was off. The oncology unit said they couldn’t see anything and thought he was teething. I took him to emergency and they sent us home that night. The next morning he hadn’t moved from the position I put him in and he hadn’t peed overnight. We went back to emergency and I said ‘Something is terribly wrong, he’s not moving his legs.’ Finally that night they did an MRI and said there appears to be a tumour blocking his spine.

BLOOM: How did you cope with such drastic swings in Noah’s condition?

Ivona Novak: Your baby is in ICU, and you know not everyone gets out of ICU. We were a crying, giant mess. I needed to sleep, but when I lay down, I couldn’t. We called our doctor for sleeping pills and my husband was on his drugs and I was on my drugs—to survive.

BLOOM: What advice would you give other parents in similar situations?

Ivona Novak: You have to take it day by day, which is hard. We got big pieces of paper and whenever there was an improvement, or he did something good, we’d write it down and hang it up. So there was a room full of hanging papers to track progress and help us feel better. The other thing I'd suggest is to really advocate for your child if you’re not satisfied with an answer, or with what someone’s doing. No doctor or nurse was offended when I came with more questions or did my own research.

BLOOM: Did anything else help?

Ivona Novak: I used to meet with Val Lusted, the social worker here, once a week. She was fantastic. It was nice to have an hour where Noah is not with me. It was nice to rant and put my thoughts on the table.

I follow a very active spinal cord injury forum called the CareCure Community. There aren’t many people with kids with spinal cord injury. This is a forum of mostly adults that’s hosted at a university and there’s a nurse that joins in on discussions. I heard about a Shriner’s program in Chicago on this forum. They’ve seen some kids as young as Noah and we’re going there for two to three weeks in March. It’s a non-profit and they will cover the costs and our airfare. They have equipment there—like the Lokomat—for kids Noah’s size.

The more I’m immersed in this community, the more I realize you have to do your own research. Every person has a piece, but they don’t have the whole picture.

BLOOM: Were you generally happy with Noah’s medical care?

Ivona Novak: Yes. The only thing that was hard was the way we were given information when Noah was in the ICU. We had a team lead from each unit—neurology, neurosurgery and oncology—coming in. They would give different information, which was confusing. It would have been better to have a funnel where all of them spoke to one person, who then communicated to us.

BLOOM: So right now Noah is in remission?

Ivona Novak. Yes. As long as the cancer never comes back, no matter what happens, I’m happy that he’s alive. We always get nervous around exam days—like when he has to get an MRI. We haven’t stopped thinking about the cancer.

No one can give us an answer on how the spinal cord injury will affect Noah. Every spinal cord injury is different. It’s hard to accept not knowing what his outcome is going to be. I’ve asked every doctor and physiotherapist ‘What do you think the chances are that he’ll walk?’

Getting a wheelchair was a huge step to realizing he has a disability. You see a kid in a stroller and you see a cute kid. You see a kid in a wheelchair and people stare and wonder what’s wrong. That transition between having an image of a normal-style family to accepting that we have a kid with a disability, regardless of how much function he gains or doesn’t—is hard. But we have to live in the now.

Tuesday, January 24, 2017

Family's residency in limbo over son's cerebral palsy

By Louise Kinross

Six years ago Kara Melissa Sharp’s family moved to Canada on a work visa her husband Alastair held as a journalist. They brought their son Sebastian, now 8, who has cerebral palsy. Since then daughter Tallula, 4, was born and is a Canadian citizen. 

Three years ago the family applied for permanent residency. In November 2015 the government asked for additional information about Sebastian’s education and health. A year later the government wrote to say Sebastian’s health and social care needs will place 'excessive demand' on Canada. This is one reason, listed with human rights violations or being convicted of serious crime, for rejecting an application. The family was given 60 days to prove that their son will not be an unusual drain on Canada’s health and social system.

BLOOM: How can you prove that Sebastian’s health and social costs will not be above those typically expected?

Kara Melissa Sharp: We have to concede that he is medically inadmissible under the current laws. However, by signing a letter that states we will pay for all social services, which includes public education, and any health costs above what a typical child would use, we will strengthen our case.

BLOOM: I understand you have a settlement from a London hospital where Sebastian was delivered, because they accepted responsibility for brain damage he suffered during delivery.

Kara Melissa Sharp: Yes. It’s complicated because in cases like ours you have a team of people on each side evaluating Sebastian and doing a cost-of-care analysis. To assess Sebastian’s needs for the course of his life takes many experts, money and time. But the costs will differ depending on where we live, so we need permanent residency before we can finalize our claim in the U.K. Essentially our lives are on hold while we wait.

We do have a small fund from his settlement, and because of this we don’t rely on the charity of groups such as the Ontario Federation for Cerebral Palsy or programs like Holland Bloorview’s family support fund. We also don’t use government funding like Special Services at Home or CCAC.

Our situation is unique in that we have access to money, but we can’t send the government a letter that says ‘this is how much we have.’ They need to tell us we can stay, so we can pay to evaluate how much we need.

BLOOM: So the idea is that the government would offer residency on the condition that you pay for all social service costs and costs above a certain threshold for health care?

Kara Melissa Sharp:
No. While we can, and will, sign a letter stating this, it doesn’t guarantee our permanent residency. It only provides a stronger argument for our case.

But we need to know more about health services. Right now there's no existing mechanism for having families reimburse the government. They expect us to pay for them at point of service. This inflates the price because we would be billed as out-of-province patients.

BLOOM: You mentioned that Sebastian will be having hip surgery soon.

Kara Melissa Sharp: Yes, in March. Our lawyer here has said if we commit to paying at least part of the cost of this hip surgery it may help our case. So we’re researching what it will cost to get the hip surgery done here without OHIP. We’ve also looked into having Seb’s recovery at home, rather than in hospital, and covering it privately.

It’s really stressful. Instead of focusing on Seb’s needs we’re finding out about the financial side and even then there’s no guarantee. We can pay all of this money for hip surgery, and they can still say you can’t stay. Then we are out of that money and our home.

BLOOM: At a practical level, how would the government expect you to pay for services?

Kara Melissa Sharp: We know a little about this because a couple of times we’ve lost our OHIP while waiting for a new work permit. The government has no process for collecting the fees, other than you not presenting your OHIP card at point of service. You’re treated like someone from out of province, so your fees are increased. We’re paying taxes but we’d be paying the costs of someone who isn’t a resident.

BLOOM: Why is the ‘excessive demands’ requirement discriminatory?

Kara Melissa Sharp: When you read the reasons for not being able to stay in Canada, all of them are about criminality. Then you have disability and health.

I don’t know what’s going to happen to me while I’m living here. No one knows the future. Something could happen to me that would result in my depending on the system for the rest of my life. That’s the reality. Sebastian is being treated as a sum of his diagnoses on paper.

It’s the kind of thing we see every day as the parent of a child with a disability and health needs. People don’t see our children as individuals. We fight for everything, so now we have to fight for the right to live here and keep doing what we’re doing. We're very active in the community, and people are writing letters for us about how we impact their lives within our community and how it’s reciprocal.

BLOOM: You said that the government seems to be viewing Sebastian as a non-person.

Kara Melissa Sharp: I feel it’s about net worth. What is your son worth, how much more are you willing to pay, and what can you pay? He’s treated as a number on a wait list. Is he taking up someone else’s spot? If he is, he’s not worth as much as someone who is also Canadian. That’s what they’re saying. That the people already here are worth more and he’s not worth as much because he has a disability.

I get it, there’s an amount of money that has to be budgeted for everything. We can help pay for this stuff and we’re going to give back. But at the end of the day, there’s another family who’s not going to be able to pay.

BLOOM: Are you able to apply for permanent residency elsewhere?

Kara Melissa Sharp: We can apply to go to the U.S. or Australia or even the U.K. But applying for visas, green cards or citizenship takes time and money, just as our application to Canada cost thousands of dollars. And we’re still in the process three years in. Our visa in Canada expires in October this year. My husband’s job is also tied to Canada.

BLOOM: You mentioned that the lack of permanent residency has impacted your plans to make your house accessible.

Kara Melissa Sharp:
We can’t buy a house because we don’t have permanent residency. We want to have an accessible house. We’d also like to do something bigger.

We’d like to open up a café-recreation therapy place where people come together of all abilities. We would employ people of different abilities and have trips. We feel it’s important that Seb continues to have a community as he grows and has the opportunity to feel like he’s doing something. We see a great need for this for young adults here.

BLOOM: What will you do if your application is denied?

Kara Melissa Sharp: We’ve already spoken to our local MP and if we can get a petition signed by 100 people, she will back it and take it to parliament.

BLOOM: The whole process sounds demoralizing.

Kara Melissa Sharp:
You don’t talk about it in front of the kids. They know something is going on, but you just hope they don’t know what’s going on. If we have to go to Ottawa and talk with the media we will have to explain to them in a way that Tallula doesn’t resent having to move, and Seb doesn’t feel in any way that he could be the reason we’re leaving our community behind.

A part of you wants to just move and say ‘this is our choice,’ we’ll start a new life somewhere. But we can’t do that because Alastair’s job is here, in Toronto.

It’s really awful to be treated like your son is just a burden. You wonder how much of society still believes we should have to pay for his care. What about other families who don’t have the money to pay for the care?

They make us feel like our son doesn’t have the right. That he’s not important, he’s not a person.

We get a disability tax credit and that really helps us out at tax time. Does this mean we’ll lose that? And if we do, then they’re not recognizing Seb as a person because his disability is a part of him. It’s not who he is, but it is part of him. Our lives are good because of him. Our life took this path because of who Sebastian is, and we live a good life here in Toronto with the friendships and support of our community.

Friday, January 20, 2017

Bloorview school: 'best place I've been to in my life'

By Louise Kinross

Years ago I knew Osmond Shen as a student in our Bloorview School. He’s now 19 and in Grade 12 and we caught up in an e-mail interview. In the photo above in Spiral Garden, he appears with his seven-year-old brother Edmond.

BLOOM: What disability do you have and how does it affect your life?

Osmond Shen: I have cerebral palsy. It causes severe limitations in motor function, speech and communication, along with limitations in accessibility to some places.

BLOOM: What is one place you wish you could go that you can’t?

Osmond Shen:
I wish I could go to Shanghai with my parents when they travel back home. But there is no option for accommodating my wheelchair on the airplane.

BLOOM: You were in our integrated education and therapy program in our school. What was good about the program?

Osmond Shen: I was in the IET for four years. One thing that was good was that there were swimming classes I was able to attend with my mom. I also enjoyed having the Spiral Garden program and taking part in all the outdoorsy activities.

Within the IET program I had the opportunity to walk around the building with special equipment. Once a week we had a mobility class and with the help of therapists we would individually walk around the building to different word wall stations as both a literacy and physical activity. That was something that I found challenging but fun at the same time.

BLOOM: Was there anything you didn’t like about the program?

Osmond Shen:
Everything was great about this program. I just wish I could stay there longer.


Osmond Shen:
Because I liked the place and the facility is great. That was the best place I’ve ever been to in my life. The IET program in particular helps us to reach our goals through gradual progression. For other schools there isn’t as much progress for students compared to the IET program.

BLOOM: How do you get your thoughts down onto the computer?

Osmond Shen:
I get assistance from other people who type down my thoughts for me. They record down as I express myself.

BLOOM: Is speech your primary way of communicating?

Osmond Shen: For people who don’t understand my speech, I have a communication display. It works by using colour-coded boxes that have some text within them that easily allows me to communicate the word by using respective colours. But the main form of communication I use in case someone finds my speech difficult is to have a friend help translate to that person.

BLOOM: How does communication affect your friendships?

Osmond Shen: With my disability it’s rather difficult to try to get to know someone because it requires a lot of patience to understand my speech. Not everyone is able to communicate effectively with me. The friendships that I do have are quite strong, since both of us are highly patient and understanding of one another.

BLOOM: It must be frustrating when some people aren’t patient enough to get used to your speech.

Osmond Shen:
I’m fairly used to those situations and what I tend to do is keep on repeating myself until they understand what I’m trying to communicate.

BLOOM: Where do you go to school now?

Osmond Shen: I’m in Sir William Osler High and I am in the special education class program.

BLOOM: What are your favourite things to do in life?

Osmond Shen: One of my favourite hobbies is to do various things on the computer. I’m quite tech savvy and have a wide selection of different apps that I enjoy working with. I also like to do online shopping, playing video games, browsing the Internet. I also have a blog about myself that I enjoy developing.

BLOOM: What are some of the apps you like using

Osmond Shen: Aside from typical Internet browsers I frequently use Windows Live mail to organize both my main e-mails into one platform. I also use the iTunes application on a regular basis to import new songs onto my iPod touch. I enjoy listening to pop music. My favourite band is Abba.

BLOOM: What has been the greatest challenge growing up with your disability?

Osmond Shen:
My biggest challenge is communicating with people. One other significant challenge is keeping myself calm and relaxed since I tend to tense up my muscles a lot, especially when I’m anxious about something.

BLOOM: What advice would you give a younger child with a similar disability?

Osmond Shen: The main advice I would give others with severe cerebral palsy is to consider getting a medical pump implant that releases medication which greatly helps my condition. The pump is also very convenient, high tech and actually very cool. I would highly recommend this as an option to discuss with your doctor.

BLOOM: Is this the baclofen pump?

Osmond Shen:
Yes, I use the baclofen pump to relax my muscles.

BLOOM: If you could change something about how doctors work with you, what would it be?

Osmond Shen: Not all medical clinics are entirely knowledgeable or equipped for people with my condition. I am somewhat limited with the places I can go to receive care. Aside from that, I’ve always been highly satisfied with the way health professionals work with me and my family.

BLOOM: What have you learned from having a disability?

Osmond Shen: I have learned that having a disability makes me unique in the same way that everybody else is unique. Having a disability has allowed me to have a unique perspective on life that others wouldn’t be able to see. I’ve also learned that even though I have a physical disability I’m still able to have relationships with my family and friends. In addition to the awesome perk of getting to cut through most line-ups.

BLOOM: What would you like to do as an adult?

Osmond Shen:
I would like to volunteer in Holland Bloorview to return the services that I received over the years for me and my families.

BLOOM: What type of volunteer work would you like to do?

Osmond Shen:
I’d like to greet people and act as a guide since I’m quite familiar with the place.

Wednesday, January 18, 2017

Taking away a parent's guilt may be 'my best gift'

By Louise Kinross

Physiotherapist Kelly Brewer didn’t picture herself working with children. For 11 years she worked with adults in the intensive care units at St. Michael’s Hospital. “I loved the teamwork, I loved the excitement, the new learning and the variety,” she says. “There was always something different working in intensive care.”

But then in 1990 her kids began taking swimming lessons at Holland Bloorview. “St. Mike’s had the best feeling in the world,” she says. “There was something so caring about that organization. I felt there was a similar feeling here—there was a real caring you could feel as you walked through the corridors. At the time I was looking for a change of job. In those days Bloorview was organized by ages and there was a job in the teen unit and I thought ‘I can work with teenagers.’” BLOOM interviewed Kelly about her 26 years of work here since.

BLOOM: What was it like to move from adult to pediatric care?

Kelly Brewer: I found it very hard and also a little sad.

BLOOM: Do you mean you missed your adult work, or that it was hard to adapt to the new work?

Kelly Brewer: Both. In acute care, turn over happens so quickly you’re always seeing new clients. It’s very fast-paced, where rehab, especially in those days, was much slower. That took me a long time to get used to. For my first two years here, I went back and worked one weekend a month at St. Mike’s to maintain my cardiorespiratory skills.

BLOOM: While you were working here full-time?

Kelly Brewer: Yes, my husband would look after the kids.

BLOOM: So what did you do when you first came here?

Kelly Brewer: I worked with teenagers on the brain injury unit from Monday to Thursday and on Friday I worked in the spina bifida clinic. It was a huge learning curve. I loved the kids, but often felt sorry that they had me for their PT! I was naïve and unrealistic in my expectations of what was possible and what I thought families could do.

BLOOM: Do you mean in what families could carry through at home?

Kelly Brewer: Yes. Over time I realized these families were coping with double what I was coping with. I was raising three kids while working full time and I certainly didn't have much energy at the end of the day. The families taught me a tremendous amount.

I remember telling a family ‘I don't recommend that your child do stairs this weekend
—it's still a little early for that. Then they came back and said ‘We did stairs because that’s the only way we could get her up to her bedroom.’ And I thought ‘stupid me.’ It was a real eye-opener. 

There was a lot more to learn here from the families than in acute care, because in acute-care everything is so condensed, you might only work with someone for a month. But here, you get to know the families and play a very much larger role in a person’s recovery.

BLOOM: What else did you learn from families?

Kelly Brewer: It broke my heart to hear about the financial constraints people were under. So many times I would say ‘Well, could you think about going out to the gym?’ and the parent would say ‘We don’t have the money and I don’t have the time.’

The families taught me about the ‘busy-ness’ of their lives. You can’t judge because you aren’t living their life. There are single parents, parents with mental illness, parents with multiple kids, parents going through divorces. You can’t control everyone’s situation. I’m way more realistic as a therapist now. When I’m setting anything up I do it collaboratively and I say ‘Does this work for you?’

BLOOM: What is a typical day like?

Kelly Brewer: I still work Monday to Thursday in the inpatient brain injury unit and Fridays in the spina bifida clinic. With the inpatients, I’m responsible for assessment, development of goals and active treatment. I see the kids four to five times a week and also assign some care to the physio assistant. We attend family meetings every four to six weeks, and also participate in weekly rounds.

There’s a fair amount of documentation to complete. Our kids are typically followed by another provider when they leave Bloorview, so we have to make sure there are reports to share with external agencies. In theory, computers are supposed to save us time, but right now going through all the different screens takes more time then when we used to dictate, which takes away from clinical time.

BLOOM: How many kids would you work with in a day?

Kelly Brewer: Usually four or five, so I typically spend an hour with each child.

BLOOM: Wow, that’s a lot.

Kelly Brewer: Every child is different. Some kids are more straightforward than others. Some clients are very challenging. But the good thing is we work in a team so if I have any questions or concerns there are really skilled people I can speak with.

That’s why I love doing what I do. I love the whole teamwork thing. If a child has behavioural issues, we have psychologists and child and youth workers and child life specialists to consult with. We also work very closely and collaboratively with occupational and physical therapists.

BLOOM: What’s an example of a challenging situation?

Kelly Brewer: It can be very hard to work with a child that isn't motivated or doesn't want to be here and has issues attending therapy. Sometimes a child's physical problems are challenging to treat and I need to consult with other PTs that I work with for advice. It's also very difficult when you just can't help your client achieve their goals.

BLOOM: It sounds stressful.

Kelly Brewer:
 We frequently have to deliver bad news. I was just talking to a parent on the phone before I came here. She had to go back to work, so I had to phone her with assessment results and goals. That’s the hard part. The good part is that at least I’ve met her once and we had a good conversation that one time. But I can’t read her body language on the phone, and I had to give her some news about how I don’t know how much of a difference therapy can make in her child. I try to give news in a way that is realistic but still hopeful. I hope I do it well and I hope someone would do the same for me.

BLOOM: That must be hard.

Kelly Brewer: It is stressful. I’ve matured over 25 years. I consider myself to be very empathetic. I try not to be judgmental and I’m very honest and open, just like I’d want to be treated. But it’s hard to give that information and I feel badly when I have to give news that is sad.

BLOOM: What do you do to cope with your own emotions?

Kelly Brewer: I talk a lot to my team members—the PTs and OTs—about the kids and that really helps. The best piece of the job is who you work with, and I work with some great people.

I also walk back and forth to work and that really helps because I plan my day. It’s a gift. I think about things when I’m coming in and how I will deal with something. If I have a difficult conversation I can rehearse it. That’s not to say that I won’t wake up some nights and think ‘Shoot, did I do that right? Did I say it right? Should I have given them that walker?’

I do wake up and worry and stress about things. Having family responsibilities is a distraction. All three of my kids have worked here and all volunteered here. Sometimes things came up at the dinner table when they were young. You can’t help but share what you’ve been through, what you've learned and how it has affected you.

BLOOM: What do you love about your work?

Kelly Brewer: A couple of things. I love the families I interact with. And I love the teamwork. It’s very cohesive and intensive and you have to work together. I also really like as an organization the whole client- and family-centred care focus. I went to that conference years ago at the Institute for Patient and Family-Centred Care. It’s great that the organization promotes this philosophy, and it’s great to feel comfortable with your relationships with families and that they’re so included in what we do. I love the teams I work with. I love working with nursing.

BLOOM: From when we were inpatients, I know that nurses are the heart of what we do. They spend the greatest amount of time with families.

Kelly Brewer:
We need them. I need them. Having good relationships with the nurses is fundamental to the work I do. I know them, they know me and we’re working together for the child. Sometimes they don’t get the merit they deserve.

I have to have positive relationships with nurses on the unit. Let’s say a child’s having a bad day and the nurse is able to share that with you. They need to know what’s going on and we need to know what they’re doing in their care that’s supporting all of this. We’re equal players.

BLOOM: Have your thoughts about disability changed over the years?

Kelly Brewer: When I first came I was much more uncomfortable with people with different disabilities because I’d had no exposure as a student or a physio. I’m way more comfortable with it now, I think at all levels, including emotionally.

BLOOM: How have you changed as a person as a result of your work?

Kelly Brewer: I was never known as an overly emotional person, and I guess I’m still not. But I’m way more pragmatic, honest and realistic.

BLOOM: Has that influenced you in your own life?

Kelly Brewer: I have to laugh. My daughter will say ‘Oh mom, I had a really hard day.’ And I’ll say ‘Well, so have I. There are people having much harder days than us out there.
 And she’ll say ‘That’s not the answer you’re supposed to give! You’re supposed to be compassionate.’ Our work highlights how difficult some people’s lives are and you realize the complaints we have are nothing compared to that. 

BLOOM: So you have perspective.

Kelly Brewer: Yes. I know how hard it is to work full time and raise kids who don’t have a disability. But to put on top of that the stress of a disability is really hard. As I’ve matured, that’s one thing I’ve come to appreciate.

One thing I’m better at is having much greater empathy and understanding for my students. One of the reasons I love working here is that it’s a teaching hospital. I’m very passionate about working with students, but I understand and am much more sympathetic to them. I know how hard it is to walk into this situation.

When I was younger I was much stricter and I’m much more forgiving now. So as you age you have more wisdom and perspective and see things through a different lens. I’ve spent almost 40 years working as a physio. I feel I’m a much better listener. I don’t judge as much anymore. I really listen to a family’s story and try to understand it.

The other thing I do is teach internationally-educated physios through the University of Toronto. It’s a course on Canada and the health-care system. I hear the stories of students who have done their schooling in other countries, and it enriches my work here, which is so multicultural.

BLOOM: What advice would you give to a young ‘you’ just starting out?

Kelly Brewer: For people coming in here, I guess I would say really try to walk in someone else’s shoes. Set realistic expectations. Listen to the family. For years, I would give families a home program in spina bifida and six months later they’d come back and I’d ask ‘Are you doing any of the exercises?’ and they’d say ‘No, we don’t have time.’ So now I don’t give them a home program unless they want it. I ask if I can help them in another way.

Sometimes the greatest help I’ve given is to make parents not feel guilty. I’ve had conversations where parents say ‘Maybe if I’d stretched him more, he wouldn’t need surgery.’ So I have these candid conversations where I say ‘No, You’re not responsible for it. You did the best you could at that time and you have to let that go. It will be what it will be. [Releasing] parents of that guilt may be the best thing I can give a family.

That honesty comes from being a working parent myself. I had to deal with homework and dinner and activities and I couldn’t do everything, and I didn’t have a child with a disability. I tell families you can’t do everything, you have to find priorities and deal with them. If it’s your child’s mental or emotional health, then that’s what you need to focus on. If your marriage is the most important thing, put your energy there.

A lot of times parents have taught me the most by ignoring what I tell them to do. Then, when I really listened and thought about my own life, I had to ask why I was asking them to do something they couldn’t do—that I couldn’t do! My best gift is to listen and say ‘it’s okay, it’s all right that you can’t do this.’

BLOOM: The problem is that every parent wants to be an A+ parent. But sometimes a child’s outcome doesn’t reflect what the parent put in. There are these homilies like ‘If you work hard enough, anything is possible.’ That gives parents the idea that they control the outcome for their child. But sometimes even when parents do everything imaginable, the child doesn’t make the progress they were hoping for. Parents need to be given permission to accept their child where they are.

Kelly Brewer: In spina bifida, if the child was walking when they were six or seven, but they don’t want to now at 11 or 12, because it’s too difficult, we let the parents know that that’s okay. They aren't being a bad parent for letting their child use their wheelchair more.

BLOOM: If you could change one thing about the health system, what would it be?

Kelly Brewer: I wish there was equal access to services for families. It’s really frustrating and sad when I hear about some families in one region of CCAC getting great services, while others in another region have no services.

Tuesday, January 17, 2017

Rude words from doctors and parents harm care

By Louise Kinross

In 2015, a team of Israeli researchers studied the impact of rude comments by another doctor on medical teams while they did a simulation of caring for a very sick premature baby.

The words, from an expert the participants were told was observing them, included that he was “not impressed with the quality of medicine in Israel” and that medical staff in Israel “wouldn’t last a week” in his NICU in the United States.

Twenty-four NICU teams participated and teams were randomly assigned to hear the expert’s rude comments or to hear his neutral comments. The teams that experienced the rude comments scored less well in their diagnosis of the baby’s problems and in how they performed tasks like resuscitation and asking for the right lab tests. They were rated by two judges. “Rudeness exposure [by a medical superior] can adversely affect the cognitive functions required for effective diagnostic and medical procedural performance,” the researchers conclude, and may be a source of devastating medical error.

In a new study published in Pediatrics this month, the same scientists look at what happens when an actress, playing the role of the baby’s parent in a simulation, belittles the medical team. In this study, four Israeli medical teams performed five emergency scenarios. Three of the teams were confronted by a mother who accused them of misdiagnosing her child, threatened to move the child to another hospital, and said: ‘I knew we should have gone to a better hospital where they don’t practice Third World medicine!’ The control team was not exposed to rudeness.

Two teams were given a preventative intervention—one was a cognitive bias-changing game and the other a therapeutic writing exercise. The 20-minute computer game before the simulation showed angry and happy faces and provided feedback that made them less sensitive to negative emotions. The writing exercise involved having one team write about the rude event after it happened. The teams that experienced the rude comments from the mother scored less well on how they diagnosed the baby and intervened, as well as how their team shared information and workload. The researchers showed that the pre-simulation computer game reduced these negative effects on care, while the post-intervention writing exercise was ineffective.

BLOOM interviewed lead investigator Dr. Arik Riskin, a neonatologist at Bnai-Zion Medical Center in Haifa, Israel, by e-mail to learn more.

BLOOM: Why was the study about parent rudeness needed?

Arik Riskin: The study is important because it increases awareness that there are many factors related to human behaviour, relations and communication between [health workers] and between them and their patients or families. We are not robots, we are human beings with feelings, and we react to social situations and behaviours as do other humans. But, in the case of [health workers], the impact can be devastating, because we are dealing with patients, treatments and life-and-death decisions. The remedy starts from awareness and recognition that there may be a problem with this issue. Awareness is important for us as medical team members, but it’s also important to our patients and their families and to healthcare management authorities dealing with ways to decrease medical errors and improve care and patient safety.

BLOOM: How did you define rude behaviour?

Arik Riskin: Rudeness is defined as insensitive or disrespectful behaviour enacted by a person that displays a lack of regard for others. Rudeness should be regarded as a form of uncivil behaviour. Workplace rudeness may include insulting comments, denigration of a person’s work, spreading false rumours, social isolation and bad manners.  Rudeness, particularly with respect to speech, is necessarily confrontational at its core. What constitutes rude speech depends on the culture, the setting and the speaker’s social position in the culture. Rudeness is primarily concerned with violations of human dignity or respect.

BLOOM: What are common causes of rude parent behaviour in the NICU?

Arik Riskin: I would pay a fortune to find out the answer to this question. However, I’ll share with you some of our insights from our experience. Many times rude behaviour is a late response to an incident or some stress (and the NICU experience is very stressful) that the parents experienced before, sometimes even a few days or hours before.

The rudeness is not necessarily turned toward the [health worker] that was involved in that previous incident, and may be unrelated to the parent's infant or to the NICU or hospital. It can be some argument between the parents or in their larger family.

However, when it hits the physician or nurse out of the blue, they start thinking ‘What have I done wrong?’ This starts the process of rumination—thinking over and over ‘Why did I get this insult?,’ drains their cognitive resources and eventually can affect their ability to treat patients.

BLOOM: What were the main findings on rude parent behaviour?

Arik Riskin: Rudeness has robust, deleterious effects on the performance of medical teams.  Moreover, exposure to rudeness debilitated the [collaboration] recognized as essential for patient care and safety.

BLOOM: How does rudeness impair a medical team’s ability to provide good care?

Arik Riskin: Teams exposed to mild rudeness by the patient’s mother had diminished team performance with respect to outcome parameters relating to diagnosis and intervention, and process parameters including team information and workload sharing. These findings not only replicate our earlier findings demonstrating the [negative] effects of rudeness expressed by a senior colleague on individual medical performance, but extend them by demonstrating that similar effects are elicited by rudeness from other sources and are manifested at the team level.

In this study, we also demonstrated that these deleterious effects of rudeness are not restricted to individuals, but also to teams. This is important because—based on the assumption that teams can often overcome and compensate for individual performance limitations—medical work is increasingly structured around teams. Our findings demonstrate that when rudeness is present, the very collaborative processes that generally enable teams to outperform individuals may break down.

To the extent that rudeness impedes team helping and workload sharing, teams may not be able to deliver the heightened level of patient care that practitioners have come to expect from them.

BLOOM: Why was the computer game some teams played effective in reducing the negative effects of rudeness, while the writing exercise others did wasn’t?

Erik Raskin: Prior to the simulation, teams in the preventative cognitive-bias modification intervention engaged in a 20-minute computer game in which they looked at a series of morphing faces, were asked to move a cursor to indicate whether the emotion was more of anger or pleasure, and then received immediate feedback on their choice.

During this game, the computer determined the participant’s threshold to threat—that is, the angry faces—and then gave them feedback designed to raise this threshold and ‘immunize’ them from devoting substantial attention to minor threats.

Examination of the manipulation checks showed that those in the computer intervention viewed the mother as ruder than those who experienced the rude comments with no intervention.

As designed, the computer intervention ‘immunized’ participants’ medical and therapeutic performance and teamwork by shifting their attention away from the implicit threat posed by the mother, likely preserving cognitive resources for the tasks at hand. The computer intervention operated not so much by mitigating the appraisal of rudeness, but by making team members more resilient to it.

The teams who did the writing exercise worked on the simulation with rudeness first, and then went to a debriefing room where they were asked to write a paragraph or two about how they thought the mother of the infant felt when it seemed to her that the team was unsuccessful in treating the baby.

By the end of the day, those in the narrative group did not view the mother as ruder than controls. These results suggest that while writing about the experience from the mother’s perspective facilitated participants’ positive reappraisal of her rude behaviour, it failed to help them overcome the cognitive disruption caused by it.

BLOOM: Is there a danger in making health workers less emotionally responsive to families?

Erik Raskin: As mentioned in my answer above, the computer game didn’t make health workers less emotionally responsive. On the contrary, it just ‘immunized’ them, thus changing their focus and less disturbing them in their work.

BLOOM: Are there times when a parent questioning the care is appropriate?

Erik Raskin: Parents questioning the care is always appropriate. They have the right to ask questions. In my opinion we can use it as a means to help us do better, think again about the diagnosis, re-think treatments given and other options of treatment. Generally, this is a good interaction with parents, and many physicians and nurses, like me, see parents as our partners in the goal of giving the best treatment to their children, helping them survive and grow, and go home, as healthy and happy as possible.

There is a big difference between real questioning and seeking explanations in the best interest of your baby, and rude comments, insults and blaming of the physicians and nurses. [In the latter case], parents throw all their stress and frustration (because the infant was born prematurely and is very sick) on the medical team that is trying its best to save their infant, give life and treat as best as they can.

There is also the issue of timing. We allow parents in our NICU all day long, including in rounds, but parents must understand that we also need to treat, to do resuscitation and other procedures, and to look after other babies. So we are not all the time available to answer every question. They should be patient and understand that sometimes we simply don’t have time to talk to them immediately, and we’ll be happy to do so later when we have time.

So, please don’t start shouting at us, making rude remarks about how careless or less attentive we are. This makes us feel bad, makes us ruminate about ‘What have we done wrong?’ and drains our cognitive resources in a way that eventually hurts our performance or even causes us to do unintentional harm.

BLOOM: A media story about your study includes a quote from a doctor who says that outside the NICU, parent rudeness is often a legitimate reaction to poor care and system problems. Is it possible that this could also happen in the NICU?

Arik Riskin: Sorry, but I disagree with this statement. Rudeness is never a legitimate reaction—not in the NICU, not outside the NICU and not anywhere else. This is not a nice way to express your concerns. It is a totally unacceptable form of communication among people in general. It is an act of incivility that is no less harmful than aggressiveness or bullying. 

Parents should and can express their concerns about treatment, and if they think it’s poor care, they should tell this to the medical team. If this doesn’t help, they can talk to their superiors, and if this doesn’t help, they can ask to go and get the treatment in another facility. The problem is that many times it’s not poor care, but mainly frustration on behalf of the parents because their infant is really sick and doing badly despite all the treatments given to him or her.

But, I’m ready to hear this from parents, too, and I’m not ashamed to consult another expert and seek another opinion, as long as it is for the best care of my patients. Unfortunately, many times nowadays parents are confused by a general atmosphere that is very criticizing [about] everything. This is reinforced by the media ‘looking for headline news,’ attorneys looking for law suits, and family members (who think they are supporting the parents by questioning everything, but cause the parents lots of confusion and eventually mistrust in the care their baby gets.

Parents need to have some trust and faith in the team taking care of their baby in order not to lose hope, which is so important for them, and us too. Parents should ask questions, should learn and read about their infant’s condition, and should inquire about the diagnosis and possible other treatments. But at a certain [point] they need to have some trust and confidence in us as medical team members, coming days and nights to do our best for their babies.

BLOOM: Are there differences in how parent rudeness vs medical staff rudeness impacts medical care?

Arik Riskin: Both are as bad, having devastating effects on individual team members and on medical teams’ performance as a whole. We haven’t compared both sources at the same time in the same settings, so I can’t guarantee which is worst. But based on our studies and the studies of Professor Erez and colleagues on rudeness in other settings, both have very bad influences on the [person targeted] and on those who witness it.

BLOOM: What advice would you give parents?

Arik Riskin: Try to be as patient and polite as possible. We understand that you are in real [distress], and are there for you. We even understand when you are not so nice to us because you are sad and worried. But, being sad or worried and even frustrated doesn’t necessarily need to make you rude to us.

Being rude simply doesn’t help and might actually cause the opposite by distracting us and disturbing us from doing our best. 

I have worked with many parents over the years and those that had a positive attitude to all that was happening, despite all the stress and hard times they were going through, coped much better than other parents. I believe that this attitude gave them hope, which is so important in tough times. I think they may have also been more open to the support we are willing and trying as best as we can to give to all the parents of the sick infants and preemies we’re taking care of.

BLOOM: What measures should hospitals put in place to try to reduce rudeness by senior medical staff or among medical peers?

Arik Riskin: Awareness is also important among team members, educating us to treat each other with dignity and respect. The days when a senior physician or charge nurse could be rude to a resident or trainee are over…not because it’s impolite and unfriendly, but because it [endangers] our patients.

By highlighting the impact that adverse social contexts may have on team-level [collaboration], our findings provide the foundation for a wide range of interventions aimed at enhancing patient safety. Our results suggest that instituting protocols and procedures aimed at bolstering the defenses of medical teams to the cognitive distraction and drain elicited by rudeness can help mitigate the devastating consequences of these events, even when they can’t be prevented.

BLOOM: Do you feel there’s a role for narrative writing and reflection, even though the intervention used in your study didn’t show a benefit?

Arik Riskin: Yes, I would definitely not quit this possible route of interventions, especially not reflection, which is an excellent learning tool for medical teams.

BLOOM: Have you considered doing a study to look at the impact of rudeness by medical teams on parents of premature babies? Some parents have traumatic experiences related to being talked to in a callous or dismissive way, or in hearing their child being talked about in a degrading or disrespectful way.

Arik Riskin: This is an important subject, which I’m sorry to say still exists as a problem. I haven’t done research on it, but I know that many others have studied this important aspect of communication.

Teaching physicians and other health workers to talk nicely, gently and politely with parents is no less important than the medical treatment we provide. I recall my first lesson in neonatology as a resident. The director of our NICU then, the late Dr. Berger, taught me. We went to talk to a mother after a delivery. The mother was very stressed and frustrated even though her baby was improving. Then Dr. Berger sat with me and told me her insights about how mothers feel after delivery, and how we need to talk to them and support them. She told me this was my first lesson in pediatrics and in neonatology—How to talk to a mother—and it was more important than any other lesson I’d learn.

I carry this important lesson with me and pass it over to my students, residents and fellows. I still find talking to parents the most challenging, but also the most rewarding, part of my work. I look at them as our teammates in the long, long [journey] we have to go together to make their infant survive and to be as healthy and happy as possible.

Sunday, January 15, 2017

Study links high-needs children to increased death risk in moms

By Louise Kinross

Mothers of children born with major anomalies like heart disease or Down syndrome had a 27 per cent increased risk of death when compared with mothers of children born healthy, according to a population-based study published in JAMA last month.

The researchers identified over 41,000 mothers in a Danish registry who had a baby born with major anomalies between 1979 and 2010. They matched each mother with 10 mothers of the same age who had unaffected babies the same year, then followed the two groups to 2014 to compare mortality. After a median follow-up of 21 years, 3.1 per cent of the mothers of infants with anomalies had died at a mean age of 49, compared to 2.4 per cent of the mothers whose children were not affected.

“I think the results are troubling,” says lead investigator Dr. Eyal Cohen, a pediatrician at SickKids Hospital. “The absolute risk to a given individual is not high, but on a population level, a small increased risk multiplied by thousands of people is much more substantial.” BLOOM interviewed Dr. Cohen.

BLOOM: Why was there a need for this study?

Eyal Cohen:
Parents who look after kids with serious health issues report that it’s extremely stressful, and we know from previous surveys of mothers in particular—because they’re generally the primary caregiver—that they report their own physical and mental health as poor. But no one had ever looked at mortality.

BLOOM: In your study you reference research showing that this type of parenting can cause premature cell aging.

Eyal Cohen: Yes. One of the papers I cite was from a Nobel Laureate who was the first person to discover telomeres and their association with premature aging of cells in the body. When I went back to read her original research, I was surprised to find she was studying mothers of children with severe health issues. So there’s a biological basis for this and also reports from people of poorer health outcomes.

BLOOM: What kind of conditions did the children in the study have?

Eyal Cohen: We looked at two groups: those with anomalies affecting one organ system like heart disease and those with multiple anomalies, like a child with Down syndrome and a heart defect. The reason we decided to focus on congenital anomalies is that they’re clear cut—you either have them or you don’t. They’re easily diagnosable and happen at a fixed period of time, whereas disability can be more gradual. We wanted to test our assumption that caregiving stress was associated with higher mortality risk. We anticipated that mothers looking after sicker children would have more of this outcome. But I have no reason to believe that the findings wouldn’t be generalizable to a broader group with disabilities.

BLOOM: What was the main finding?

Eyal Cohen: We found there was an increased risk of dying of 27 per cent in mothers who gave birth to babies with major anomalies, compared with mothers of the same age, with the same number of previous births, who had unaffected children born the same year. When we adjusted for factors such as the mother having health problems herself, the difference was slightly smaller, a 22 per cent increase. The increased risk of dying in mothers with more severely affected babies was 31 per cent. One thing that surprised us was that we saw this effect even within the first 10 years after delivery, and the same effect continued downstream.

BLOOM: What types of diseases did the mothers die of?

Eyal Cohen: There wasn’t one cause of death. We did find a fairly substantial increased risk of dying of a heart attack, and heart disease has been associated with chronic stress. The mothers of children with anomalies had a 97 per cent increased risk of dying of a heart attack compared to the other group. There was only a slight increase in risk of cancer, which is not thought to be triggered by stress.

BLOOM: So what does this mean for mothers raising children with complex needs?

Eyal Cohen: Their relative risk of dying of a heart attack is almost twice as high, but at an absolute level, heart attacks are not common in young women. So the overall risk isn’t huge. If a woman has a child with a major anomaly, it’s not likely that she’s going to die prematurely. But on a population level, a small increased risk, multiplied by thousands of people, is much more substantial.

BLOOM : Your study says that the clinical importance of the increased risk of death is uncertain.

Eyal Cohen: This is one paper and I don’t want people to think causality is proven with one paper. The evidence is compelling and troubling.

We often put the words maternal and child health together, and we know that if mothers are healthier, it will make their children healthier. But we spend a lot less time, particularly in health policy and support, on the concept that an unhealthy child can affect the health of a parent and family.

We don’t have a lot of programs and supports and funding dedicated to these families. I look after many families of children with disabilities and other complex health needs and it’s not infrequent that we have to address the parents’ health, and that is not easy to do. We need to see if what’s true in Denmark is true in Canada, and develop evidence-based interventions to see if we can attenuate these outcomes.

BLOOM: Your study notes that families of children with health problems in Denmark have extensive health and social supports.

Eyal Cohen: You’re correct. I would expect you would see the effect more here, where the supports are generally not as great.

BLOOM: You refer to research of senior caregivers that shows that sometimes the caring protects the health of the caregiver. Why would this be different in parent caregivers?

Eyal Cohen:
I think there’s a substantial difference in how we think about caregiving in seniors as opposed to pediatrics. When an elderly person gets ill, their caregivers generally have a choice. They can care for their loved one at home or put them in a facility. But with children, we have a societal expectation that they’re raised by their families—for all the right reasons—and it’s rare that a parent of a disabled or very ill child puts them into care. Mothers do most of the caregiving and they don’t have choices in these matters—that’s an important part of it.

The duration of caregiving is also much longer. And there’s extraordinary trauma associated with the discordance between either societal or personal expectations of what caregiving of a child will be like. It’s not a societal expectation that one will raise a chronically ill or dependent child.

There are also differences in that generally the scenarios we studied were highly unexpected. Most women go into a pregnancy expecting a healthy birth. But while there can be a catastrophic event like a stroke for seniors, often there’s a bit of forewarning that a dependent older person’s health is declining.

BLOOM: It’s frustrating as a parent to know of these increased health risks, but not see more research into how we can reduce the risks.

Eyal Cohen:
Some of the questions we discussed still need to be teased out—mechanistically, locally or contextually. But I think I agree with you that the direction of this work needs to move on the intervention side.

We need to look at more intensive psychosocial and mental health supports, especially during times of extreme stress—at diagnosis or transition from hospital to home and across different life stages. We are trialing mindfulness interventions for families being discharged from our NICU after months of being in an extremely stressful environment.

Caregivers are so busy that it wouldn’t surprise me if they don’t have time to get their own primary health care and screening. Do we need an adult health clinic embedded at Holland Bloorview or SickKids, where parents will be seen at the same time their children are seen?

BLOOM: That sounds like a fabulous idea! It’s similar to the program at SickKids for teen mothers where they combine health appointments for the mother and baby.

Eyal Cohen: We also need to look at high-level policy. There’s work showing that families of children with complex needs get poorer over time. We need to rethink parental leave and disability taxation policy.

BLOOM: What advice would you give mothers reading the study?

Eyal Cohen:
I look after many of these kids and there’s a subgroup of parents who have extraordinary resiliency. It blows me away how resilient many families are. I would advocate that we use strength-based approaches to thinking about this. How dedicated a family is to a child can be a good and extra positive experience. But particularly for those families who are struggling and find it a battle, they need to be attuned to their own health and seek out health care. At this point, unfortunately, our system isn’t set up to screen parents for that. Until that happens, caregiving mothers need to be attentive to both their stress and their health.

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.

Thursday, January 5, 2017

Learning to swim in a random sea

By D. Brown

In this sea of life, we each have our own boat. Some ride in a big ship that gives them lots of room and keeps them safe. Others like a powerboat for speed and adventure. Maybe you just sail along, either enjoying the ride at the helm, or fearing every wave.

Then at some point in life, your boat capsizes.

For us, it happened five years ago. That’s when our healthy two-year-old angel suddenly seized. Over the next few days he suffered severe brain inflammation at The Hospital for Sick Children. Our world collapsed. Three months later he was discharged from Holland Bloorview with an acquired brain injury. An autism diagnosis followed. Looking back on that experience, I'm still so confused.

Why did our boat sink? It was a really great boat. In fact, everyone was talking about how great our boat was. But it capsized. And there was no making our boat great again. At the time, that's really all we wanted.

For five years I’ve been swimming. I've barely come up for air, but at least I haven’t sunk.

Before our son’s brain injury, my career in data analysis, statistics and research helped me make sense of chaos. It gave me a sense of control in the world. I didn’t think I’d ever have to swim because I had a great boat!

After our son’s illness, my analytical mind searched for answers as to why it had happened, but could make no sense of it.

Now I’ve learned that it’s okay to not make sense of everything, and to not need to figure out why. Life is a sea of randomness. We were knocked over by a rogue wave. Although it was a huge wave, we couldn’t have predicted it or prepared for it. We certainly couldn’t have prevented it. In fact, if I spend too much time analyzing why the wave appeared, I begin to sink emotionally.

This past September was the first year that we didn’t remember the anniversary of the day our son began to seize and we raced to emergency. I did think about it the week prior, and afterwards, but that particular day we spent in chaos five years earlier went by without a single acknowledgment.

I think that says a lot. We have moved on and accepted what happened, rather than being in denial or having “wishful thinking” about a full recovery.

We’re still paddling in the water, though, and it’s hard to see the other boats and not feel a tinge of resentment or even envy at times. We know that most of the other boaters don’t know what it’s like to have to swim, or simply can’t. We’ve become pretty good swimmers. And now we have so much respect for the other swimmers stroking along beside us.

Recently it was the anniversary of the day our son was discharged from Holland Bloorview. I decided to take this online quiz googling “What kind of boat are you?” Here are my results:

“You are a sailboat. You are open to any kind of adventure from catching some rays topside to racing through tides and waves to chase the wind. Sailors are always looking up (to see where the wind is coming from), which reflects your optimistic personality. You have a knack for knowing the wind direction wherever you are in the world and are best suited to tropical, breezy waters. However, if the wind stays away too long, you may get bored.”

So although we’re still swimming in a vast sea, I’ll picture myself as a sailboat. I know this would have been the same answer I'd get on the boat quiz before my son’s brain injury. I’m still me. And I’m still chasing that wind. But in the last five years, because I’ve been forced to “sink or swim,” I’ve become more resilient than I ever thought I could.

And what about our little guy? He’s coming along just marvellously. Only time will tell if he’ll be an independent swimmer. In the meantime, though, we’re honoured to be his life jacket.

You can follow this family's progress at Affect Autism. Here's an earlier piece from the author: This time my husband used a new line: 'He has a brain injury.'

Wednesday, January 4, 2017

Amputee doc: We need to 'make room' for suffering

By Louise Kinross

Last night I was scrolling through the New York Times and a giant magazine feature on Dr. BJ Miller popped up: One man's quest to change the way we die. BLOOM interviewed BJ, a palliative care doctor and triple amputee, back in 2011: Normal: It's not all it's cracked up to be. 

Check out the New York Times piece for an in-depth look at how BJ used his own experience adapting to life as an amputee after an accident in university to inform how he works with patients who are dying. 

The take-away for me was this quote about how terminal patients need to rejig their expectations. "The question becomes how do you incorporate those hard facts into your moment-by-moment life instead of trying to run away from them?" he says. Earlier in the piece, he talks about how he needed to "get in" to his acquired disabilities, rather than trying to return to, or approximate, his previous state as able-bodied.

"Miller spent years repulsed by the 'chopped meat' where his arm ended and crushed with shame when he noticed people wince or look away," the author writes. "But he slowly became more confident and playful. He replaced the sock-like covering many amputees wear over their arm stumps with an actual sock: first a plain sock, then stripes and argyles. Then, one day he forgot to put on any sock and, just like that, 'I was done with it. I was no longer ashamed of my arm.'"