All children have voices, if only we listen

By Louise Kinross

Bioethicist Franco Carnevale recalled the assumptions he held about families caring for children using ventilators at home, prior to launching a study of them. “Our preconceptions going in were that this was an intrusive, aggressive intervention and we needed to rethink the hardships we were imposing on these families,” he said.

Franco, a clinical ethicist, nurse and psychologist at McGill University and its affiliated hospitals, was speaking at Holland Bloorview’s Pursuit Awards.

“From our critical-care lens, we had made prejudgments about what kind of life was worth living,” he said. “We went into these families’ homes looking to create lists of hardships.”

Instead, while learning about the real challenges these families faced, they also heard about the joy in their lives. “They talked about the interplay between difficulties and rewards,” Franco said. “Parents did not want us to talk about their child’s life as a burden.”

Perhaps most interesting was the meaning that a four-and-a-half year old gave to her BiPAP machine. A BiPAP delivers pressurized air through a mask so that a child can take bigger breaths when his or her breathing muscles are tired or weak.

“My ‘pap’ makes me happy,” the child said. “I really like my pap. The pap is good because it helps me to breathe.”

Accordingly, the resulting journal paper was called Daily Living With Distress and Enrichment: The Moral Experience of Families With Ventilator-Assisted Children at Home. BLOOM interviewed Franco in 2011 about the study.

Franco noted that when we think about ethics related to children living with complex conditions, we think of concerns voiced by health-care professionals. “These are important,” he said.

But we have little data based on the voices of the children living with these conditions, and their families. “So little is known about the ethical dimensions of their everyday lives,” Franco said.

He noted that historically, children were viewed as a family’s possessions, not as human beings. When their value was considered, it was in the context of whether they could make productive contributions as adults. The voices of children continue to be minimized in health care today, he said.

Franco proposed a paradigm shift from thinking about “pediatric” ethics to “childhood” ethics. “The tone of pediatric ethics suggests we are starting with the concerns of health-care professionals. What we need is a field of childhood ethics that is centred on the moral lives of children. We need to develop a new philosophy, or outlook, to understand human experiences more richly. We need to be able to understand what is most morally meaningful to children and families in their everyday experiences.”

Franco noted that an emerging “sociology of childhood” will take an interdisciplinary view of how we understand children, drawing on history, philosophy, sociology and anthropology.

The new field moves away from the “deficit orientation” of some dominant forms of developmental theory, which look at how removed the young child is from the ideal prototype of humanity—the adult.

“Children have agency,” he said. “They have the capacity to be active, moral agents who have preferences, views and outlooks on what is meaningful to them.”

Franco said the field of childhood ethics would favour qualitative approaches to understanding children’s experiences, voices and agency. “These are hard dimensions to capture through structured, measurement approaches,” he said.

Rather than a psycho-social approach to listening to children, which aims “to comfort or reassure,” Franco said, “we need to develop a way to interpret how the wishes, preferences, hopes and aspirations are ethically significant to a child.”

He noted that ethics in health is based on the idea of treatment that serves a child’s best interests. “But how do we define best interest, and who gets to define it?”

Franco said he and his fellow researchers got their definition wrong before they studied families living with children with ventilators at home. “’Best interest’ needs to be linked to what is morally meaningful to a child,” he said.

In answering a question about the notion of “giving a child a voice”—which is how the media often frames stories about voice technology—he said he doesn’t use that phrase. “All children have voices,” he said. “We haven’t been listening.”

In an e-mail exchange after his talk, he recalled working as a pediatric nurse in the 1970s, when the medical theory was that newborns didn’t feel pain. “I recall many times holding down newborns as tubes were inserted between their ribs, or catheters into their major veins. These babies grimaced and squirmed. Parents were horrified, although they rarely witnessed this, because they were forced to step out during these procedures. These babies were vividly expressing distress, but we discounted their ‘voices’ because we didn’t understand them.”

Franco says the same holds true for any child who doesn’t communicate in conventional ways. “In many situations, parents are optimal interpreters for these voices.”

Franco Carnevale is principal investigator of VOICE: Views On Interdisciplinary Ethics. You can follow VOICE on Twitter @childethics. Pictured above is Zoey Faith with Holland Bloorview nurse Joy Zergara.

Read More

Lisa Boivin paints stories about medical ethics beyond words

By Louise Kinross

Lisa Boivin is a member of the Deninu K'ue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based, Dene ethics. She is a bioethics specialist and graduate student at the Rehabilitation Sciences Institute at U of T's Faculty of Medicine.

“Academics often want you to give an absolute, sweeping bioethical answer that fits into all circumstances, but there are certain land-based ethics that can’t be held in academic language,” she says. “So I translate them through painting. I situate my Dene experience and perspective in the paintings, and then I extract the story.”

Lisa is presenting the Town Hall session at the 12th Annual Bloorview Research Institute Symposium on Nov. 21. Her image above is called Holding Thunderbird.

BLOOM: Why did you study bioethics as an undergrad?

Lisa Boivin: I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.

BLOOM: You mean that the most important ethics are found in a patient perspective?

Lisa Boivin: Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent.

BLOOM: What is the sacred ceremony of informed consent?

Lisa Boivin: It’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. That’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.

BLOOM: Can you describe your art?

Lisa Boivin: I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60's scoop survivor from two generations of residential school survivors.

One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured on the BRI symposium program is called Holding Thunderbird (see image above).

BLOOM: Can you describe what it means?

Lisa Boivin: From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.

I don't feel knowledgeable, I simply carry a knowledge that is unfolding in images I'm creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy.

BLOOM: In the academic world?

Lisa Boivin: Yes. The Thunderbird is me, and the woman holding Thunderbird is a professor. In the academy, I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.

BLOOM: Can you give an example?

Lisa Boivin: There are times when bioscience research clashes with Indigenous research methodologies.

BLOOM: And bioscience is always seen as supreme?

Lisa Boivin: Yes.

This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.

She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.

For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.

For this professor, I didn’t have to change or fit my knowledge into a colonial format. All I was expected to do was share my arts-based knowledge. I wasn’t sure if I was going to return to my academic program. And this was the reassurance I needed that I am knowledgeable, and that my knowledge has value.

BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.

Lisa Boivin: This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.

My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.

I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.

BLOOM: You said you only began painting three years ago?

Lisa Boivin: I had some artistic abilities as a child, but I stopped because I was bullied so much. I shrunk, and the art was gone.

I feel the beauty that is translated through my images comes from another place. It’s the ancestors coming through me. When I’m doing land-based activities, like anchoring bioethical theory or conceptions of wellness or rehabilitation in my painting, I’m no longer disabled. My mind is clear.

BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?

Lisa Boivin: There are different Indigenous perspectives on disability and wellness. You’d have to take the time to research those. There is Navaho literature on autism and other intellectual disabilities.

Of course, any Indigenous person would want someone else to embrace a notion of wellness that will benefit them and their family.

Nothing would make me happier than if someone threw away the medical model that’s measuring who they are as a person.

Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. We have to snatch as much happiness as we can. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.

My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.

In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.

You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’

BLOOM: I love that. There’s no judgment in it.

Lisa Boivin: It really is that simple. Having a learning disability, my conception of disability in the past was that I was academically inferior. I had an inability to perform as well as other students.

An understanding of ‘doing different stuff’ has really helped me. In my graduate studies, I have come to know that my GPA is not an accurate measure of my knowledge. I don’t have great grades and my ideas are resisted constantly by my peers and many of my professors. But people seek me out to speak at their conferences and events.

In November, I'm keynoting The Ontario Psychiatric Outreach Program's conference and Woodsworth College's annual accessibility conference. I also did a centre talk and taught two arts-based workshops at St. Michael’s Hospital in the summer. That professional affirmation keeps me from giving in to the notion that I’m academically inferior to members of my cohort.

BLOOM: We did a narrative group for our inpatient nurses, and in addition to writing about their emotional experiences caring for children and families, they drew comics to help them see from different perspectives.

Lisa Boivin: In my arts-based workshop, I ask clinicians to create a visual narrative of themselves. Drawing yourself really expands the idea of practice. I ask them to draw who they are as an individual, how that influences their practice, what they want to contribute to their working community, and what they want to give to their patients. That’s a pretty big task to do in an hour! But it teaches people to be more reflective.

There’s something about drawing a piece of yourself where you have to capture a piece of your humanity. Within that humanity is vulnerability, but also an understanding of your responsibility as a clinician.

For me, I have my own image, and sometimes I have to go back to that image to remind myself to be better at what I do.

Being the frustrated Thunderbird that I am, there's a hawk feather in my self-portrait to remind me to speak gently and clearly. I also have a clipboard which represents consent. I’m always trying to build a place where clinicians can understand what consent it.

BLOOM: What do you hope to do in the future?

Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.

There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they're seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.

Medicine has also been used as an instrument to remove Indigenous children from their homes, because it's perceived that Indigenous parents can't look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.

I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.

For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.

I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.

BLOOM: I think your ideas could be helpful to any patient, including non-Indigenous patients.

Lisa Boivin: Imposing a medical model—one standard or one measurement—on any group of people is really harmful.

For my first two years as an undergraduate student, I struggled. It wasn’t until I was able to understand certain concepts and put them into images that I was able to thrive.

Learn more about Lisa’s experience and insights in her Ted Talk: Painting the Path of Indigenous Resilience. In this video, she describes the image Sharing Bioethics below as the overlap between a traditional Dene circle of medicine and an academic circle of medicine. "We all hold circles of medicine," she says. The photo below is by Erin Howe at the University of Toronto.

Read More

From patient to bioethicist, Dolly comes full circle

By Louise Kinross

I met Dolly Menna-Dack in 1999 when we interviewed her as a youth role model in BLOOM (then called Connections). At age three, Dolly, who has juvenile rheumatoid arthritis, began coming to Holland Bloorview three days a week for therapy. From age eight to 12 she came every day for school and therapy. At 12 she spent eight months here as an inpatient following surgery. “Greg Steffler taught me to drive a stretcher, known as a ‘banana cart,’ which is even more difficult than driving a car,” she says. At 16 she was a member of our first youth advisory council, and volunteered for many years throughout the hospital. For eight years Dolly worked as a youth facilitator in our LIFEspan clinic supporting youth who are transitioning to the adult world. Last summer Dolly graduated with a master’s in health sciences in bioethics. In February she was hired as Holland Bloorview’s clinical bioethicist.

BLOOM: How did you get into the field of ethics in children’s rehab?

Dolly Menna-Dack: I have arthritis and because of that I was personally involved with the health-care system from a very young age. I started off my university career in human biology, planning to go to medical school. But then I discovered I was really interested in how we make healthcare decisions.

I wanted to help kids and youth understand that they can participate in discussions and be empowered to make decisions about their healthcare.

I’ve always wanted to be a support system for children and youth as they think about those big health-care decisions. Most kids don’t make decisions on their own, they make them with family, friends and the health-care team. The pediatric health-care team is like a long-term member of the family, and disability isn’t something to be fixed or figured out, it’s to be explored and understood together.

BLOOM: What was it like when you came here as a three year old?

Dolly Menna-Dack: My first memories all centre around the old Pat pool and the rainbow over the pool. My first memories include Joan Ferguson, who was my first physiotherapist [and later our vice president of programs and services]. From Grade 3 to Grade 7 I came here every day for therapy and school. It was like home. It was always a part of my normal and was never strange.

BLOOM: Did you identify any ethical issues here as a child?

Dolly Menna-Dack: I could see that not all of my friends that came for regular therapy knew as much about their health care as they could have. I recognized that my mom had been making an effort to make sure I listened and was present during conversations. My friends that didn’t have disabilities knew even less about their health. They didn’t put any thought into answering ‘How are you?’ For kids with disabilities, ‘How are you?’ is an evaluation. You’re evaluating what type of answer you’ll give and how that answer may impact your day. If I say ‘I have pain’ or ‘I’m not feeling well’ or ‘my splints are hurting’ that can change what I do that day.

BLOOM: What are common ethical issues in children’s rehab?

Dolly Menna-Dack: An example of a common issue is consent and capacity. It’s really about when a clinician proposes a treatment or a plan to a family, they’re tasked with evaluating if the child understands and appreciates the consequences of the options given to them.

There can be times when the child and family may disagree about the course of action, or the child and team disagree, or the team members disagree among themselves.

BLOOM: It sounds very black and white—that either a child is capable of making decisions or not—whereas it seems like there would be a lot of grey area.

Dolly Menna-Dack: Kids need to be a part of the discussion, whether or not they’re making the decision. The beauty of pediatrics is the dance of assent—of ensuring that a child is enrolled and empowered to say when they’re not sure about the treatment. We want to encourage children and youth to express what their concerns are so they can be better prepared. They need to participate.

BLOOM: I can’t really ask you about your typical day as bioethicist as you're only just starting. 

Dolly Menna-Dack: A big part of my role will be providing ethics education for staff and the Holland Bloorview community, leading the bioethics forum and ensuring teams have someone who is easily available to them to talk about ethical issues. My plan is to engage staff to highlight how ethics can support them when they encounter moral distress. I want them to view ethics as something that will help them help clients and families.

The important lens I’m bringing to this role is multi-faceted and grounded in my experience being a user of the health-care system in pediatrics and adult care. I've also worked with clients and families for many years both here and at Toronto Rehab. I believe that’s going to guide my work and make me relatable to our clients and families. It’s a rare gift to understand the roles of everyone who may wish to have the support of a bioethicist.

As Dolly is just starting her bioethicist job, we'll check back in six months to learn more about what happens in a typical day.

Read More