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.'"

Tuesday, January 3, 2017

Study gives voice to family stories behind clinic no-shows

By Louise Kinross

About 15 per cent of the time families miss their appointments at Holland Bloorview and in most cases, they don’t call to cancel.

“These families are referred to as ‘no-shows’ or ‘hard to reach’ or ‘not interested,’” says chief nursing executive and clinician investigator Marilyn Ballantyne. “Because these are expensive health-care resources and no one wants to be inefficient, we sometimes make assumptions about families’ behaviour. We tend to judge them.”

In the first study of its kind in children’s rehab, Marilyn and her research team interviewed 15 mothers in our neuromotor program who agreed to talk about what makes it difficult to get to appointments.

“Hearing their stories we were struck by how it’s not what we think,” Marilyn says. “Parents never took not coming lightly. They were often overwhelmed with the challenges they faced.”

Some of the children were medically fragile, and often sick or hospitalized, researchers heard. Mothers talked about their child having a bad day and not being able to tolerate a four-hour round trip on public transit, particularly in bad weather.

One-third of respondents relied on public transportation. “We heard about families waiting for the bus and the bus would pass by because it was full, or Wheel Trans wouldn’t wait.”

Sometimes the appointment at Holland Bloorview conflicted with a special event at school, a visit with a different medical specialist or a sick sibling. Perhaps the parent had no input into the timing. Things got more complicated when a single mom was doing all the juggling.

“The average number of appointments per month is five,” Marilyn notes, “and these children have complex needs,” Marilyn says. Some mothers said staff had made them feel bad about missing an appointment, so they were hesitant to call to cancel.

Based on mothers’ suggestions, the research team is looking at how they can better work with families to make it easier for them to attend appointments.

“Because travel is very difficult for some families, is there a way we could provide transportation—maybe through Uber?” Marilyn says. “Do we need extended hours so the family has greater flexibility in meeting competing priorities? What about having open-access scheduling, so the parent goes online and finds a spot that works better for them and reschedule? Would a key contact person or navigator be helpful?”

Traditionally, we’ve talked about ‘no-shows’ but not about the people and situations behind them, Marilyn says. The idea for the study came “from two frontline nurses—Laurie Liscumb and Megan Perron—who wanted to understand families better, hear their stories and do something about the barriers they experience.”

This research was funded by the Centre for Leadership in Child Development at Holland Bloorview. A peer-reviewed paper is in the works.

Wednesday, December 14, 2016

Doctors who work with brain-injured newborns need humility

I’ll never forget a time I went to visit a child in the neonatal intensive care unit (NICU). I was in the waiting room during a shift change, and another mom was talking about her newborn and said that the doctor had recommended withdrawing care. “I realize he’ll have cerebral palsy,” she said, “but he’s still my my son.

Predicting how a newborn with brain injury will be affected is a science marked with uncertainty, yet parents need to make decisions about treatment. At the same time, parents and doctors may have different beliefs about whether it’s possible to live a good life with severe disability.

Given these dilemmas—and the ethical questions they prompt—a group of researchers published an article in Developmental Medicine and Child Neurology suggesting five qualities clinicians need to keep top of mind when working with parents.

They are reflection, humility, open-mindedness, partnership and engagement.

The research was funded by the Kids Brain Health Network and brought together neonatologists, parents, child neurologists and other clinicians.

BLOOM interviewed lead investigator Eric Racine, director of the Neuroethics Research Unit at the Clinical Research Institute of Montreal to learn more.

BLOOM: What do neonatologists say is most challenging about giving a prognosis?

Eric Racine: Our paper speaks to the tension between the desire to obtain certainty about a child’s future outcomes and the lack of data to make such calls.

BLOOM: I assume that clinicians feel a lot of pressure from parents to make a definitive prediction?

Eric Racine: I think you will see parents who really desire certainty, as well as parents who are comfortable with uncertainty. There have been studies with patients and parents who say they appreciate clinicians who can communicate the uncertainty of prognoses, so it may be an assumption that we think we need to provide certainty to parents. We probably shouldn’t underestimate the complexity of information that can be conveyed to parents—not in one clinical encounter, but as part of an ongoing relationship.

BLOOM: The paper suggests that doctors hold biases against disability.

Eric Racine: Biases against disability—and a misunderstanding about the possibility of a good quality of life with disability—are common challenges and in some ways explainable. Clinicians are trained to heal, to treat, to alleviate injuries so their own professional ethos is driven by a desire to avoid ‘poor outcomes.’ For this reason, doctors need to make an additional reflection to put these values in brackets and say ‘people from different backgrounds may view things differently.’

BLOOM: What was the goal of your research?

Eric Racine: To provide an ethics framework for communication with parents of a newborn with severe brain injury. It includes a number of questions that foster self-reflection and self-assessment in clinicians. We didn’t provide guidelines because we felt that this would be too prescriptive.

BLOOM: You list five qualities that clinicians should demonstrate when working with families.

Eric Racine: Yes. The first one is reflection. This is the ability to step back and re-examine one’s immediate opinions about prognosis and ask questions. It’s having the mind-frame that no matter how much experience you have, perhaps others would think differently about the prognosis or the quality of living with those projected disabilities.

BLOOM: The next one is humility.

Eric Racine: When you realize the limitations of scientific knowledge and your own knowledge, and the existence of your own biases, you need to remain careful in giving any kind of definitive opinion about “This child will …” The idea of humility is a buffer to any form of arrogance. The clinician, who has seen many, many similar cases, may appear arrogant or distant to the parents who are really struggling at the bedside.

BLOOM: So you’re saying that because the doctor may have seen these cases so many times, they may appear indifferent to the enormity of what the parents are going through?

Eric Racine: Yes, this is something they do every day. But there are ways to be empathetic and connect with parents that dampen perceptions of being distant or arrogant.

BLOOM: I’m sure that in some ways when a doctor appears distant it is perhaps because they’re protecting themselves from their emotions.

Eric Racine: That’s why self-reflection is so important. We need to take a step back and ask ‘why are we doing things this way?’ If it’s because the situation is painful and difficult, then that needs to be acknowledged and discussed in clinical teams so that the root causes are [recognized] and addressed.

BLOOM: The next quality is open-mindedness.

Eric Racine: This is about being willing to be confronted or challenged by outcomes that contradict your prediction, or by values other than your own. A clinician may view things one way, and the parents may view it very differently. It’s important to respect where people are coming from. It’s also important to be open-minded about things not going the way you predicted they would go.

Partnership is the next idea, and there’s a whole literature supporting shared-decision making and more collaborative interaction with parents. The idea is that people bring different strengths or types of knowledge to the table. It means that maybe parents don’t have the technical experience, but they may have other important pieces of the puzzle. They may have a sense of what it will be like for them to live with a situation. There are different models of partnership.

For example, sometimes a parent is recruited to be an advisor in the NICU environment. It’s important that families know they can be connected with other families who have gone through similar situations. It may not be obvious to parents how they can be involved, so clinicians need to let them know about the opportunities.

BLOOM: When you’re talking about care decisions being made, are you mainly talking about whether a decision to withdraw care is being considered?

Eric Racine: Yes, that’s one of the big decisions. But there are other kinds of decisions related to treatment and palliative-care options. A lot of these are difficult, end-of-life situations.

BLOOM: The last quality is engagement.

Eric Racine: That springs from the fact that we’ve heard parents voice concern and sadness about the fact that when they leave acute-care there is limited support for them.

BLOOM: So you mean when parents bring a child home? That they no longer have contact with the NICU doctors?

Eric Racine: Yes. It’s important for neonatologists to realize that there’s a gap in ongoing services for the patient and for the family unit, and to do something about it. The acute-care environment needs to do a better job at bridging with chronic-care environments. It’s not good that families have such limited resources and that they feel abandoned. Clinicians need to be engaged and be advocates. They need to participate in generating long-term follow-up data. One of the critical gaps is building databases where outcomes are collected and predictions are tested for their validity.

BLOOM: I imagine that in addition to needing to have a better understanding of outcomes, it’s important for clinicians to understand how families cope over the long term.

Eric Racine: Yes. I’m in favour of collecting holistic data—not just about the disabilities and function of a child, but about the family unit and the impact on the family. Parents in acute-care want to know what it’s like to raise a child with severe neurological impairments. They want to know how that works in reality. Most people don’t have a clue about that.

BLOOM: Is there a role for stories about real families here?

Eric Racine: Yes. Those narratives would be an interesting way to engage families in conversations. It can be hard to make sense of family experiences, however. You can have a family of a child with very minimal cognitive impairment who are really, really struggling and finding it very, very difficult. And then you can find situations where the child has very severe neurological impairment but the family seems very happy.

BLOOM: I was at a conference on how the devaluation of disability influences medical care of disabled children. And a neonatologist stood up and said that in her field there was an unspoken bias where doctors are willing to go to extreme lengths to accommodate a child with severe physical disabilities. But that they believe an intellectual disability is ‘a fate worse than death.’

Eric Racine: We’re aware that there are these biases and clinicians admit they exist. We’ve done some research with Canadian physicians and we get a sense that there’s a bias towards brain health, or a negative prejudice about anything that concerns the brain. That’s now documented. But how exactly it may, or may not, impact clinical decisions needs to be further investigated.

But even if those clinical biases don’t change decisions about withdrawal of life support or the kind of care offered, they can generate profound hurt in parents and even have an impact on the relationship between the parents and the child.

Parents are left to ask: ‘Am I wrong to be caring for this child?’ They can be judged as lacking common sense. Certainly in our paper we consider these biases inappropriate. When they exist, they must be recognized and reflected on and should not be imposed on families.

BLOOM: I think the principles the paper suggests are excellent. But I wonder how a very busy doctor would have time to reflect on implicit biases they have—or even know how to do that? Wouldn’t that require some kind of ongoing training and formally bringing clinicians together to discuss these issues?

Eric Racine: You’re right about pointing to this limitation. This is a first step. I think the next step for us is thinking about how we can bring these ideas closer to a clinical environment and how we can help clinicians who want to take ownership of them and discuss them.

BLOOM: The paper talks about how doctors need to respect the value system of the parents. But what if parents of a child with a very minimal disability say they won’t accept their child?

Eric Racine: I think there are situations where withdrawal of life support would be completely inappropriate and neonatologists would step in and be advocates for their primary patient—the child.

There are also times when it’s inappropriate to continue care and parents won’t let go and neonatologists have to step in and ask questions about the meaning of the care offered, especially if it involves pain, suffering and prolonging of a life that is extremely limited. There are extremes on both ends of the spectrum.

By Louise Kinross

Thursday, December 8, 2016

'A big part of my job is telling families the diagnosis'

By Louise Kinross

Dr. Melanie Penner is a developmental pediatrician at Holland Bloorview who focuses on autism. She’s the person who gives parents a diagnosis of autism in their child. Frustrated at the years’ long wait for behaviour therapy in Ontario, she had a study published in JAMA Pediatrics last month that puts the cost of that delay at $267,000 per child over a lifetime. Melanie is happiest when knitting or managing her fantasy baseball team.

BLOOM: Why did you get into developmental pediatrics?

Melanie Penner:
Growing up my mom worked as a special education teacher. I was always exposed to kids with physical disabilities, kids with intellectual disabilities, kids with autism, and I loved it. I liked science in school and went to medical school. I remember the day that a developmental pediatrician came and spoke to our class and ever since that day I never wanted to do anything else. I worked as an inclusion counsellor at Parks and Rec camps, so it’s been an ongoing theme in my life. I love to see kids participate and I love to see kids have little successes. I want to be a person who can help them get there.

BLOOM: You also did a degree in health services research.

Melanie Penner
: During my pediatric residency I found myself really interested in how care was designed and delivered. I learned that I’m a person who’s quite pragmatic and interested in efficiency. When I was in the second year of my developmental pediatrics fellowship at Holland Bloorview I decided I would do a master's degree in health services research. My daughter was six weeks old at the time, and my husband tried, in vain, to give my baby her first bottle in the Starbucks in the building while I interviewed.

BLOOM: How did you manage to juggle your fellowship, your master's and a new baby?

Melanie Penner:
I’m still not sure. I had a six-month mat leave and that’s when I did the interview. I cried the whole way home. But from where I am now, I shouldn’t have been so worried. It was a lot of work, but my daughter was in the daycare here and it was great. It made the transition back to work so much easier, on emotional and logistic levels.

BLOOM: How would you describe your job now?

Melanie Penner:
I have two clinical hats. Most of my clinical practice is doing developmental assessments for autism. So I’m giving the parents the first diagnosis. I also work in the psychopharmacology clinic with kids with neurodevelopmental disorders and complex behaviour problems. I’m a scientist in the autism research centre and I do services research for autism. Right now I have a project looking at whether community pediatricians can diagnose autism accurately, instead of families waiting months upon months to come here.

BLOOM: What’s challenging?

Melanie Penner:
A big part of my job is telling families the diagnosis of autism and helping them through the initial stages. That takes an emotional toll. I’ve come to learn recently that I can carry that with me in more ways than I think. If I’m feeling poured out emotionally, I don’t necessarily have the reserves when I get home to deal with the negotiation of getting my daughter into bath and bed. Sometimes by the end of the day, I definitely need a bit of quiet time to myself.

BLOOM: Do you do anything proactive to help yourself cope?

Melanie Penner:
I’ve taken up knitting. Knitting is my happy place. It totally diffuses the stress out of my fingers. I even knit during meetings and rounds here.

BLOOM: Isn’t it hard to follow a meeting and a knitting pattern?

Melanie Penner:
If the knitting is straightforward, it helps me focus. It’s kind of a legitimate fidget to have. There’s one person, who will remain nameless, who likes to sit beside me because she finds sitting close to my rhythmic knitting movements soothing.

BLOOM: There’s the clacking sound of the needles.

Melanie Penner:
Yes. It’s a sensory experience. What I like about knitting as well is that it helps me to be gracious with myself. If I make a mistake, I have the option, which you don’t have in life, of going back and pulling everything out and fixing it. But I’ve gotten better at just leaving my mistakes in. I call it artisanal charm, so people know it’s hand-made. It’s a good way to think about forgiving myself and going easier on myself. I’m a recovering perfectionist, so it’s a good exercise for me.

BLOOM: I’ve read articles in the New York Times about how knitting is similar to mindfulness meditation.

Melanie Penner:
I’ve read those too. Because of the therapeutic benefits I’ve had I’m going to start a knitting group for teenagers with autism. Knitting aligns so nicely with classic autistic strengths: if you look at a pattern it’s a very visual exercise to go through and knitting involves sticking to a repetitive task that others might find too monotonous. There’s the sensory experience of it. And a knitting circle has a social context but you can do it without making eye contact.

BLOOM: When will that start?

Melanie Penner:
I’m putting the materials together and I hope by the fall of 2017. We’ve applied for Centres for Leadership funding. I have knitting teachers on board, a behaviour therapist and occupational therapist to modify the program, and an adult with autism who’s been knitting for 20 years just joined the team.

BLOOM: What’s challenging with research?

Melanie Penner:
Rejection is built into the job. Most of the time you won’t be successful with grant applications. That’s been another emotional learning point for me—to learn to bounce back from those things. I’m a huge baseball fan and I’ve had to take on the mindset of a baseball player: that if you’re succeeding 30 per cent of the time, you’re an all-star. If you strike out you can snap a bat over your leg but you still have to go up to the plate next time. Life is the metaphor through which I understand baseball. That’s how important baseball is to me.

BLOOM: Do you play?

Melanie Penner:
No, I’m terrible at ball sports. But I manage a fantasy baseball team. You get together with a bunch of people and draft players.

BLOOM: What do you love about your work?

Melanie Penner:
I get to see families six months after the autism diagnosis and what’s amazing is that over that time, you see that some families are really thriving and their kids are thriving. You often leave them in this difficult state, and then six months later you get to see how their thinking around the meaning of autism has changed. It’s changed not who their child is, but how they view certain things about their child. They have a better understanding of their child and we get to celebrate the gains their child has made.

With research, rewards are a bit more clearly defined: when you get a paper accepted or get a grant, that feeling is incredible. I try to ride it as long as I can. When I found out I got a small CIHR grant for my study looking at the accuracy of pediatrician diagnosis of autism, I was crying so much I couldn’t get the words out to my husband.

BLOOM: Have your thoughts about autism changed?

Melanie Penner:
Most of what I know about autism comes from talking to kids and teenagers with autism and their parents. I don’t get much exposure to adults, but I do read a lot of literature by adults. My thinking has changed. Being a physician, and coming from a place where we think in terms of biomedical disease-based models, even though we’re trying to break out of that, this [rehab] world is so different. I see the ways that acceptance plays into things and I’ve tried to learn a lot from neurodiversity advocates. One thing I keep in mind is that the construct of autism I have now shouldn’t be the same way I’ll think of it in 10 or 20 years.

BLOOM: What drew you to this area?

Melanie Penner
: Autism captured my imagination. I think it’s the way our population thinks so differently. The way my patients see the world and express themselves is always a pleasant surprise and it challenges me and my assumptions.

BLOOM: How do you balance acceptance of disability with our desire to fix things?

Melanie Penner:
Even from the time of diagnosis, I’m trying to bring in these ideas of acceptance now. A lot of our therapies have focused on trying to give children the skills to function in the neurotypical world. The bigger work we have to do is making the world a more friendly and inclusive place where people with autism and other differences can shine and contribute in the way they want to. Often parents will ask about what they can do to make their child normal. But if the child is doing something like flapping—that’s not hurting anybody—I tell them that’s not a ‘him’ or ‘her’ problem, that’s an ‘us’ problem. I have no interest in trying to take those things away.

BLOOM: It must be hard to be the point person giving a diagnosis when the average wait for publicly-covered therapy is two and a half years.

Melanie Penner:
It’s always a difficult discussion that contributes to some of the emotional baggage I end up with. It’s a two-tiered system where families with means can pay privately to access therapy right away. We do have some access to charity funding that can be put towards private services sooner, and we’ve figured out little workarounds that we try to employ with the help of our social workers. I also have parents who seek out a lot of information on their own and implement different parts of therapy. Some parents have even trained to become behaviour therapists.

BLOOM: What are your hopes for the future?

Melanie Penner: I hope my work can help to create a more equitable future for people with autism and their families.

Melanie was the focus of this Ontario Medical Association video Putting Patients First. The photo above is a still image from the video.