Clinicians must better respect children's 'agency,' ethicist says

By Louise Kinross

The other day my son had an interview to volunteer in a cat adoption centre in a PetSmart.

He can’t speak and doesn’t have a robust form of alternative communication, but he can use some sign language.

That night, when I asked him about it, he signed that there were two cats. They were black and white.

(I’m now not sure if one was black and one was white, or if they were both a mix of the two colours, or if one was a solid colour and the other wasn’t. It’s amazing how much you can lose when communication is fuzzy).

They were small, he signed. He got to pet them. In his job he would feed them and clean their cages and do paperwork for adoptions.

“What were the cats’ names?” I asked.

 He made the sign for ice-cream (which in a different context could also mean “lick” or “lollipop”).

“Ice cream?” I said.

 No, he signed.

 Licky Tongue? This is a Pokemon character he used to like.

 No.

“What is the first letter in the name?” I said. I grabbed a piece of paper, a pen and a book he could write against and thrust it upon him.

I felt like a desperate contestant on a game show.

He kept repeating the original sign. He didn’t want to write down a letter because it’s hard for him to write.

“Please, just the first letter.”

Finally he wrote an “L.”

“L?” I asked.

Yes he signed.

“/l/” I said, sounding the letter out phonetically.

“/l/ is for lollipop,” I said, referring to the Jolly Phonics system we’d used years ago to teach him to read.

Yes! he signed exuberantly.

“Lollipop?” I said. Was this a clue or the answer? Unfortunately, the wheels don’t turn that quickly in my mind anymore.

“Lollipop is the name of the cat?”

Yes, he signed. Then he began to clap.

“The cat this morning was called Lollipop,” I yelled out enthusiastically to my husband.

I felt like I’d hit the jackpot on Jeopardy or just won a brutally competitive game of charades.

“What was the other cat called?” I said.

My son looked at me blankly. He got up and walked into his room. I couldn’t blame him for giving up.

About 10 minutes later I was still thinking about the cat called Lollipop.

One of the cats was black, he’d said. Suddenly “Licorice” popped into my mind. Licorice would be the perfect name for a black cat.

I raced into his room: “Is one of the cats called Licorice?”

“Yes,” he signed.

“Licorice and Lollipop!” I exclaimed. I gave him a high-five and screamed out the news to my husband.

Then I texted the worker who was with Ben that morning. “Was one of the cats called Lollipop?”

Sometimes my son gets so frustrated with our inability to interpret what he’s saying that he’ll sign “yes,” just to get me off his back.

“Yes,” the worker wrote back. “He read the cat’s name on the adoption paper.”

“Licorice?" I typed in. “What about Licorice?”

“Yes.”

It had taken about 30 minutes to determine that the cats Ben saw were in fact called Lollipop and Licorice.

But what if I’d stopped guessing after getting “ice cream” wrong?

I shared this tale last week at a talk by Dr. Franco Carnevale, ethicist and psychologist at McGill University. Dr. Carnevale worked for decades as a nurse in the pediatric intensive care unit at Montreal Children’s Hospital. 

Dr. Carnevale asked how we can better hear the voices of disabled children in healthcare, particularly those with intellectual disabilities or who can’t speak. The question is on the agenda of VOICE—an interdisciplinary research team he’s leading to identify and address ethical issues in Canadian children.

Dr. Carnevale encouraged us to think of children as agents “who have a capacity and intentionality to engage and form meaningful preferences and to direct those preferences in a way that matters. They have an intentional, meaningful engagement with things that matter to them.”

He said the concept of a child’s best interests must be “highly informed from the child’s agency, from their expression of interests.”

This is particularly challenging when a child can’t communicate in conventional ways. “We consider all young people as vulnerable, but there are all kinds of ways that young people who have any form of compromise in their expressive capacity are additionally vulnerable and marginalized," Dr. Carnevale said. “We don’t have a clear way of understanding how things matter to them. Does that mean their voices matter any less?”

Dr. Carnevale spoke about how solving ethical issues in medicine usually centres on the child’s “best interests. But there’s no agreement on what that is," he said. “When we do case consultations, people make rival claims on what is in this child’s best interests.”

He noted inherent problems with the way we assess best interests.

“The interests are being evaluated and declared by adults without the recognition that adults have interests that may not be congruent with the child” he said. “There is an inescapable subjectivity when adults—healthcare professionals and parents—assert what is in the child’s best interests.”

Dr. Carnevale said we tend to systematically underestimate children’s ability to participate in treatment decisions. In addition, our understanding of capacity is poorly developed and often arbitrary. “You either have capacity or you don’t,” he said. “There’s a threshold. If you’re below that, what you want and how it matters has no ethical weight. I worry deeply about the common ‘all or none’ tendencies among clinicians' views of mental capacity.”

When considering what’s best for a child, “suffering” and quality of life are discussed. “But almost always these are incongruent with how people with disabilities themselves describe their quality of life in studies.”

Dr. Carnevale said the treatment teams who make life or death decisions about whether to continue or withdraw care don’t have experience with children who survive prematurity or injuries with medical complexity or disabilities. “We’re imposing highly uninformed concepts of quality of life with the illusion that they are objectively verifiable.”

Clinicians need to strive for empathic attunement, he said, which he described as “not just trying to get the emotive sense of a person, but trying to get what that person’s perspective is like. We need to find a way to foster intellectual humility on very complex concepts.”

As a reminder that medical beliefs can be based on biases, not science, he recalled that when he began nursing in the 1970s clinicians didn’t treat pain in newborns. That’s because they believed newborns didn’t feel pain. In fact, studies now show newborns may have a heightened sensitivity to pain.

Dr. Carnevale said he’s horrified to recall how he and other clinicians performed painful procedures on infants, without pain control, despite the fact that the babies grimaced.

Is it possible that we misjudge capacity, and what matters to a child, in a similar way?

How can we be so sure of a child’s inner world when they can’t express it in ways that we understand? 

Dr. Carnevale said our concept of best interest must be “maximally informed by the child’s own important information on how things affect them. I worry that we too readily dismiss the importance of taking the required time to understand, by conflating communicative difficulties with experiential compromise. It's easy and tempting for someone who is rushed to assume all words are meaningless.”