Updated: Sep 12, 2020
I first met Dr. Johny Van Aerde in 2008, at a children’s health conference in Montreal. At the time, he was a Neonatologist and Regional Director for Newborn Medicine at the Stollery Children’s Hospital. This is the story of how we slowly got to know each other, and how we stepped out beyond our roles of mom and physician to be unlikely colleagues.
I was attending the Canadian Association of Pediatric Health Centres conference as the mom of a child with a disability (Note: Dr. Van Aerde was not my son's physician). Dr. Van Aerde and I both attended an ethics workshop that was described as “when parents and health care practitioners disagree about what is appropriate for end of life care for children.” There was a panel of speakers, but not one of them was a family member – they were all health professionals.
I recall Dr. Van Aerde and I were standing at separate microphones in the conference room. I was shaking with nerves, observing out loud that there was no family representation at the session. Dr. Van Aerde was explaining that sometimes physicians had to act on behalf of families. We began our relationship seeped in disagreement.
As I’ve learned more about relationships between patient/families and clinicians, I’ve realized over the years that it is actually ok to disagree. In fact, sometimes agreeing to disagree in a respectful way can be a strong foundation for an evolving relationship. (I co-authored an article with Amanda Bolderston called The Radiation Therapist and The Patient about this very subject).
The key is to take the time to understand the other’s perspective. Even if you don’t agree, at least you can acknowledge that the other person has a different point of view. Disagreement does not have to be a relationship killer. It can be an opportunity for what Dr. Van Aerde calls “the art of deep listening.”
The next memory I have of Dr. Van Aerde was a year later. He was standing in the hallway of my home in Edmonton one snowy day in December. My husband and I were hosting a potluck Christmas Party for the members of the Stollery Children’s Hospital’s brand new Family Centred Care Council. I had been hired as the new family centred consultant and Dr. Van Aerde was a physician member on the inaugural council.
I remembered him well from the conference the year before and felt unnerved. Johny Van Aerde is extremely smart, quick and well-spoken. My B.A. in English pales beside his collection of prestigious degrees. I had not spoken to him socially, but there he was, standing in the hallway of my house.
“Call me Johny, ” he said, and I relaxed a tiny bit. We weren’t at a formal health conference, and I was hosting him in my home. The mom and the specialist were now on more equal footing.
What I remember from our chat that evening was that when Johny talks to you, it feels like you are the only person in the world. He makes unwavering eye contact, and nothing distracts him from your conversation. This simple gesture removes all pedestals and you end up connecting to each other as human beings.
I understood then why Dr. Van Aerde had the reputation among families of being a cherished Neonatologist. It is rare to truly see and hear one another in the world of health care.
After that conversation, I no longer felt intimidated. Johny and I slowly formed a collegial relationship, a person to person one, beyond a mom to physician one.
We continued to get to know each other at Council meetings. He once said, “discussion rhymes with concussion. I’m more interested in dialogue than discussion.” Over the years, I have picked up bits of insight from him like this and have tried my best not to use the term discussion again.
Zoom forward two years. I was distraught about a leadership program I was taking at a university. Johny is sitting with me, generously providing me counsel.
He is blunt and does not mince words. He says firmly: “Sue, you are uncomfortable because you are growing. Growth is uncomfortable. That’s why most people don’t want to grow.” I didn’t like to hear it, but he was right.
We last had a telephone conversation in December after the release of my book. He teased me and called me “the famous Sue Robins.” But then he says seriously, “thank you for your book.”
In my notebook, I have scribbled notes from our conversation:
“What else is possible?”
“You are at the centre of a ripple.”
“We must build coalitions to change the system.”
My head snapped back when he added, “Maybe this isn’t about patient centred care. Maybe this is about relationship-centred care instead.”
A lightbulb goes on. All my best relationships with folks who work in health care have transcended beyond me being a merely a mom and the other person merely being a physician, radiation therapist or nurse. We have seen each other as people first. Relationships are the secret sauce to health care reform.
It is here that this essay comes full circle. My Bird’s Eye View Course Content Module 2 is called The Nuts and Bolts of Patient Centred Care. Perhaps I should have titled it The Nuts and Bolts of Relationship-Centred Care instead? If you click on the Lesson Plan, you can be the judge of that.
This Lesson Plan is called The Great Debate - Patient Centred Care v. Relationship Centred Care. It is based on an opinion piece written in the Canadian Journal of Physician Leaders in Winter 2015 called Relationship-centred care toward real health system reform by Johny Van Aerde, MD, MA, PhD, FRCPC.
Dr. Van Aerde’s opinion piece will make you pause and ponder. I’m thrilled he gave me permission to share it. Even if Johny and I don’t fully agree, he always, always challenges me to think. And that to me is a mark of a good relationship.
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