“Tell me what you understand about your son’s condition.” With this straightforward request, my son’s kidney doctor let my knowledge lead the way during one of our first appointments together. My son was just over a year old at the time. His renal ultrasound and lab work had indicated signs of decreased kidney function, which we understood to be one of (many) emergent, secondary symptoms related to his mitochondrial disease. I was so relieved to be asked for my insight at the start of the appointment. I knew how audaciously long my son’s medical chart was by that point in time, and how very busy doctors at his children’s hospital were. While I am always confident in the quality of care he receives, I knew even then that only I and my husband truly understood the complexity of his illness from a day to day perspective.
At the doctor’s empowering request, I gave the “elevator speech” that I had been crafting. “We know his disease is progressive and that there is no cure. We know it can affect multiple organ systems simultaneously. Our priorities right now are to help him gain weight and to optimize medication management to control his seizures. How does his kidney health fit into this picture?” I usually gave this rundown at some point during my son’s other appointments, but never at the doctor’s invitation, and rarely at the start of the conversation. I had historically tried to find a point in other provider conversations to politely interject, and make sure that the provider and I were working from the same baseline of understanding. But, as a woman in the world, trained by society to be polite and deferential to those in authority, and as a new mother overwhelmed by the complexity of my son’s condition, this did not come naturally to me in the early days of my son’s journey, and occasionally felt forced or awkward. Fortunately, I heard early and often from many others in my son’s ecosystem, including his occupational therapist and other special needs moms, that my role was to push past the discomfort and make those conversations happen. But many parents don’t get enough of that encouragement or face social or cultural barriers that make acting as advocates difficult. Every provider interacting with a parent in the world of medical complexity, from a patient scheduler to a lab tech to a researcher, should have some language to ask for, encourage, or reinforce the role of parents and caregivers as essential influencers in the child’s plan of care. Every children’s hospital that has identified patient and family engagement as a strategic priority should have resources in place for patient and family empowerment, such as in-person and online trainings, co-created by family advisors, about how to navigate and advocate within the unique hospital system.
In this instance with the kidney doctor, it felt so refreshing to just put our knowledge and priorities out there, and have the doctor build the discussion from the base of our hard-earned perspective. We had a very direct and open conversation about chronic kidney disease, including the various stages and diagnostic indicators. We learned that our son was in very early stages, and, despite another diagnosis for the chart, were very relieved that his symptoms were mild and only needed to be monitored for the time being (while also understanding that they could get worse over time). It’s a pretty good day when a parent can receive another chronic diagnosis and walk out of the room thinking, “that went pretty well!”
Contrast this with an exchange I had with a hospital social worker during my son’s first hospitalization at three weeks old. If she had asked me what I understood about my son’s condition, I would have said, “I have no idea what’s happening right now. He doesn’t have a diagnosis. They think it’s a metabolic illness, but no one has told me what that might mean for him or his future. He is my first child, my brand-new baby, and I am more devastated and overwhelmed than I have ever been in my life.” But she didn’t ask. Rather, she came in and gave me a rather blunt referral for local early intervention services. She suggested I contact them right away, so that my son could get the “extra help” he might need. I. Was. Shattered. No one had yet told me my son might experience physical or intellectual delays and disabilities, and yet there was a social worker, lobbing a grenade towards my fragile, breaking heart.
Readiness is essential for productive communication in the face of medical complexity. Parents caring for chronically ill children are inundated with information, and the diagnostic data is only the beginning. There are medications to evaluate and measure, provider cultures and processes to navigate, lab results to try to understand, etc. ad infinitum. Parents must constantly synthesize these overwhelming inputs and readjust their related expectations regarding their child’s well-being. Throw in some emotional trauma and sleep deprivation, and it’s a wonder we even remember our own names. The most powerful words in a parent/provider relationship, I believe, are please help me understand. These words acknowledge complexity and leave room for vulnerability. These words extend an invitation to find a common ground between provider expertise and parent wisdom. These words mitigate erroneous assumptions, that either a provider may have about how much a parent does (or doesn’t) know about their child’s condition, or that a parent may have about the purpose of their visit. These words can build relationships and can illuminate readiness for difficult conversations. As a parent, I enter every appointment with a mini-agenda of my understanding of why we’re there, and what I’d like to know more about – and I am always open to be redirected by the provider if I feel confident that they “get” my son. The providers that proactively seek our family perspective and trust what we know what we’re talking about have been critical to our ability to accept and live well in the face of a life-limiting diagnosis.
Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson. Colson, impacted by mitochondrial disease since birth, inspired Liz to face the complicated aspects of his life through writing and advocacy. Liz serves as a family advisor at Seattle Children’s Hospital, and is a volunteer ambassador for the United Mitochondrial Disease Foundation. She is committed to helping families find the information they need to help them live well in the face of life-limiting illness. You can find Liz on Instagram @mrsliz.morris