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
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.
By Ron Bishop
Our son Neil is 14. He was diagnosed at a week old with cystic fibrosis. When he couldn’t hold up his head or sit at age one he was diagnosed with cerebral palsy and developmental delays. He didn’t walk on his own till he was 11—that was an amazing day.
It’s fair to say that Neil’s three favourite places are: a swimming pool, where he can engage in Olympic-calibre, slap-splashing; a set of stairs—any set of stairs, any size, any height, carpeted or not, anywhere, including those in buildings at Drexel University in Philadelphia, where I’m on the faculty—and the escalators at a local bookstore.
From the start of Neil’s fascination with the bookstore escalators, the staff has been kind and accommodating. My wife Sheila and I know many by name. Some days it’s almost like a scene from the classic television show Cheers, when Norm Petersen trundled in to the fictional Boston bar to enthusiastic shouts of “Norm!” Other kids have been castigated for their rambunctious escalator behaviour, but Neil rolls merrily on, up and down, laughing.
Once, when one of the escalators was shut down for repairs, a genuine look of sadness crossed the face of Tom, who like many of his colleagues has come to know what these visits mean to Neil. We improvised, of course; the malfunctioning escalator became a set of stairs. We cruised up and stepped down.
But while the store’s employees have been kind—so much so that Sheila and I sent a letter thanking them to the corporate office—it’s the range of public reactions to Neil, and his intellectual disability, that coalesced into the leaping-off point for my next book.
With apologies to the very talented people who created the hit movie Inside Out, when we go out with Neil the looks we get typically reflect:
Disgust, as if the person is thinking—but will never muster the guts to say—“how could these people bring him here?” Some sneer visibly at Neil. Some change direction to avoid any contact with him. Some act as though they might catch his challenges. Others grumble when he cuts, with no malicious intent, in front of them to get on the escalator.
Indifference is the look we most frequently experience, as if Neil isn’t even there. Maybe intentional indifference is more accurate; these folks see him, they just don’t “see” him. To be fair, it may be that they’re wrapped up in what’s taking place in their own lives—getting a book for school, for example, or trying to quiet a grouchy child.
Curiosity It’s as though they’ve come upon an animal seen only in the wild or are gawking at a museum exhibit. Kids most often display this look, although to be fair, it probably originates in a lack of exposure to folks like Neil. It’s actually a mix of wonder and…
Fear—Neil doesn’t notice it, thankfully. But Sheila and I have been brought to tears more than once by kids who cringe when they see him, as though they’ve seen a monster, and duck behind a nearby parent.
Happiness It’s heartwarming when folks express gratitude to Neil for purportedly keeping the escalator moving. “Are you helping us get to the top?” they’ll ask. “Thanks a lot buddy,” we hear now and then. Others just smile at him: some out of a sense of obligation, others to check off “was nice to a disabled person,” and still others just because they recognize that he’s a very compelling individual.
A couple of weeks before Christmas last year, a middle-aged couple who watched Neil for about an hour from a table in the café stopped us between descent and ascent and handed us a $25 gift card. They told us he was a beautiful young man—quite true—and asked that we use the card to buy him a present.
Finally, we have Emulation. Neil has inspired a small but dedicated legion of imitators, kids who watch the escalator, grasp and pretend to propel the handrails, and now and then follow us on our forays.
During a visit this past October, two young girls, probably 12 or 13, hitched about a 10-minute ride one step behind us. Others dip into the escalator shenanigans songbook, sitting on the steps, running up and down, and attempting the time-honoured “go down the up” and its just-as-exciting cousin, “go up the down.” Sheila and I cringe with fear and a little embarrassment when a kid gets in trouble with a parent or a staff member for wanting to hang out and ride.
I’d guess that for all of these folks—the nasty, the encouraging, even the kind—Neil’s presence at the foot of the escalator is unusual and unexpected. We’ve learned that families like ours, with a child with an intellectual disability, are often reluctant to go out in public.
My new book will dissect how the news media portray people with intellectual disabilities—as hopeless victims or spunky competitors who sink a basket after sitting on the bench all season. Rarely do we see people with intellectual disabilities celebrated for who they are as individuals.
A huge part of the book will be stories from families with experiences like ours. I’ve put together an open-ended survey to collect stories from parents about how their child is treated by the general public and family, and how this influences their lives. If you’re the parent of a child with an intellectual disability, please consider filling out this anonymous survey. Thank you in advance for your help!
Ron Bishop is a professor in the Department of Communication at Drexel University in Philadelphia. To speak with him about his upcoming book Holding Up The Sky Together, e-mail Ron at rcbsam@comcast.net.
By Louise Kinross
Intensive behavioural therapy for autism is expensive—over $100,000 per child. In Ontario, the average child waits two-and-a-half years to get it.
Now a new study in the journal JAMA Pediatrics puts the cost of that treatment delay at an additional $267,000 per child over a life time.
That’s because later therapy is less effective, resulting in less independence in adults and the need for more lifelong support, says lead investigator Dr. Melanie Penner, a developmental pediatrician at Holland Bloorview.
Using 2012 Ontario data, the researchers did a cost-effectiveness analysis—the first of its kind looking at autism and wait times in Canada. “We built a mathematical model to look at the probability that kids had of receiving intervention at different ages and paired that with outcomes data from the Ontario program,” says Dr. Penner. “We then linked expected gains in early intensive intervention with projections for future independence, which meant you could live independently and work in paid employment.”
Eliminating the Ontario wait, so that the average child with severe autism got therapy at 2.7 years instead of at 5.24 years, would save the government almost $53,000 a child over a lifetime, the study shows. It would save society $267,000—with family caregiver time for adult children being the biggest cost. “That gap shows the additional burden families take on when we don’t have timely access to programs,” Dr. Penner says.
The study used findings from a 2011 Ontario outcome study that showed that children who received therapy before age four gained an average of 20 IQ points compared to those who received it after. “We don’t expect programs to work for everyone, and IQ is not a perfect predictor of independence, but it is one predictor in studies looking at adult outcomes,” Dr. Penner says. She said future research needs to identify other variables.
Dr. Penner, who has a Masters in Health Services Research, says her clinical work prompted the study. “I was seeing families in my clinic six months after the diagnosis and the main issue that kept coming up was wait times, wait times, wait times. I wanted to get an idea of the impact of those wait times on the investment [taxpayers] are making. The main findings show that investing in earlier access to intervention is a good investment for governments and society: when people with autism do better and families do better, we all do better.”
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