Agency lives in the how

I have a string with 967 beads on it. Each bead represents something done to my daughter Rona’s body in the nine months before she died: transfusions, chemotherapy, radiation, nights in the hospital, and needle pokes, among others.

Here’s the part I don’t always say out loud: Rona hated her string of beads.

We never made it past adding the first sixty while she was alive. She didn’t want to track what was happening to her body in that way, and I didn’t have the bandwidth to keep up. It was enough to survive each procedure as it came.

I finished the string a year after she died with help from a Child Life Specialist. I sat on my couch with something mind numbing on in the background and threaded each bead one by one. It was important to my healing: Yes, these things happened. Yes, it was as hard and heavy as it felt at the time. 

I completed the string the month before my first lecture at the medical school. It has become, unintentionally, the most effective teaching tool I have.

When I bring this string into a room of clinicians or med students, the reaction is almost always the same. People jump up to help me hold it. It takes 8 adults to bear the weight – anything less and the string will break (it has twice). The room goes absolutely silent. And the tears start. 

The beads make something visible that our charts don’t: the cumulative weight of “good care” on one small body and the people delivering it.

Like this string, our healthcare system is excellent at counting procedures and doses. What we are less equipped to measure is the human cost to both patients and providers of those numbers, especially when the patient is a child.

In pediatrics, children rarely have autonomy – they can’t simply refuse life‑saving treatment – but that doesn’t mean they have to be passive objects of care.

Research on children’s participation in healthcare decisions shows that while kids often cannot refuse treatment, they can be given small decisions about how care is delivered. These choices help them feel more in control and build trust with clinicians. Therapeutic play, for example, lets children explore equipment, rehearse procedures, and express emotions in their own language. These interventions consistently reduce anxiety and improve coping.

In other words: agency lives in the how, even when autonomy is limited.

Our systems rarely count that. We count the transfusion, not the choice of bandaid color after the IV is removed. We count the MRI, not the child’s decision to hold a parent’s hand or a favorite toy en route. We count the sedated procedure, not the time spent explaining it in words the child can repeat back.

The beads on the string likely won’t change. The experience of those beads is where we have room to move.

When I talk with teams in care settings, I focus less on grand ethical dilemmas and more on ordinary tasks they already do. Agency is often hiding there in plain sight.

A few examples I use:

• Food service: When the food service team comes to take an order, spend enough time in the room to really get the child’s request. This might be the only moment today when this child gets a real say in what happens. A three‑minute conversation about breakfast can become a rare pocket of control.

• Procedures: Before labs or imaging, someone can ask, “Which arm do you want? Do you want to watch or look away? What do you want to listen to while we do this?” These may sound small, but they teach a child that their preferences change how care is delivered.

• Therapeutic play: Child life specialists using dolls, art, or games to rehearse procedures aren’t just “keeping kids busy.” They’re giving children a way to understand and practice what will happen on their own terms.

When I teach with the string, I’m not asking clinicians to stop adding beads. Many of those beads are what keep children alive months or years beyond what statistics suggest. But I am asking them to add a different kind of metric alongside the counts they already track:

• How often did a child’s preference change how something was done today?

• How many opportunities for choice did staff intentionally create during meals, procedures, therapy, or play?

• How many times did we pause long enough to ask a child or parent, “What would make this feel a little more bearable for you?”

The answers won’t fit neatly into an EHR dropdown and they will likely never be captured for billing purposes, but they can fit into culture and they can certainly help to reduce trauma.

Leaders can:

• Encourage teams to build one extra question of choice into each interaction. This might seem counterintuitive as we strive for efficiency, but anyone who has ever had to feed a toddler knows asking if they want the blue or red plate can shave thirty minutes off of negotiating bites later on. 

• Invest in child life and play specialists, whose work turns abstract “agency” into concrete experiences for kids. We often hear that “play is the language of the child.” Speak their language so they understand what is happening. 

• Celebrate stories of small acts of control the same way we celebrate procedural success. A child asking a grown up for information about their procedure, or reminding someone of a hygiene protocol is huge. We should recognize it as such. 

None of this replaces the work of getting diagnoses right or treatments funded. It sits alongside it. It says: We see you not just as a body we’re treating, but as a person who deserves a say in how this goes.

When I hold up the string, I’m not blaming anyone in the room for the beads. I’m inviting them into a different kind of accountability. If you’re going to spend your career adding beads, how often will you also create moments where those children believe: “I get a say in how this happens to me.”

That’s the work we are trying to do through Rona’s FUN LAB: helping teams see the agency hidden inside ordinary tasks, and to use those opportunities intentionally. Because we may not be able to stop the beads from accumulating, but we can absolutely change how heavy the string feels.