Cara and Justice in 2016
by Cara Coleman, JD, MPH
“No offense, but I hope we don’t see you again.”
We used this phrase often — when discharging from the hospital, finishing a procedure or imaging session, leaving the lab, leaving weekly sick appointments and so many other times. Sometimes it was a nod of mutual respect between me and our providers, and other times it was loaded with a wish and hope that maybe my daughter could stay home and healthy. It was a phrase spoken between teammates, between partners, between friends.
In 2014 I wrote about my daughter, Justice, on this blog. Justice died this past spring. I wish I could see her again. She would be sitting on the bed, leaning into me — my arms encircling her body, keeping her balanced while burying my face into her cheeks, kissing her to make the giggles and smiles flow. I miss her. But I also miss our healthcare team — the people who worked hard all those years to keep Justice healthy enough that I could relish those hugs.
I am given room to grieve the loss of my child. It is expected. But does anyone expect me to grieve the loss of dozens of family-provider relationships? Some people might respond that such a loss would indicate that professional boundaries were crossed and such grief and feelings of loss are inappropriate.
Exactly.
The boundaries, for many of us, were definitely crossed. This is what happens sometimes in relationship-based care, in pediatrics, in the care of a child with medical complexity. This is what happens when you are thrust into a massive, impersonal healthcare system and forced to be vulnerable, to share intimate familial details and experiences for over a decade — you search for humanity.
Justice and one of her caregivers, Mayra Miranda.
This is what happens when you are part of a healthcare team; when you become a true partner with your child’s providers. Our relationships were toiled over, appointment by appointment, year by year, based on care, trust and collaboration. Although we still talked most of the time in acronyms, lab values and clinical terms, we also spoke to each other as people.
I remember when a doctor came back after rounds just to check in on us again and hang out, bringing me a Diet Coke and bringing Justice a hair bow. I remember the X-ray and fluoroscopy technicians who already had Justin Bieber music cued up on their iPad to play during the hour-long imaging session. I remember the crisis IV nurse who knew just how to soothe Justice, talking about her zebra-striped Chuck Taylors and rockin’ tunes so she would relax and we could get IV access. I remember the care team both in the room and on the phone during the last family meeting. The air was thick, heavy with sorrow, compassion and peace. “This is going to be hard, but you will be okay. We will be okay.”
While there was quite a bit of bad in our decade enmeshed in the healthcare system, there was a lot of good medicine. Humanistic medicine grounded in relationships. Conversations that began with “How are you?” and a hand on the shoulder. Conversations that ended with “No offense, but I hope we don’t see you again.”
I miss saying this. I miss my daughter. I miss our doctors, our nurses, our technicians — I miss our friends. This secondary loss — it stings. I mourn the loss of our team, our partnership. We worked intensely and tirelessly together.
I also celebrate the life of one joyous and amazing girl, the hope she brought us all, the compassionate care provided to our family, and those who dared to cross the professional boundary. I am humbled. I am tearful. But most of all I am thankful to have had the kinds of family-provider relationships that were so caring that I grieve them at all.
Cara Coleman works for Family Voices and the Institute for Patient- and Family-Centered Care and is an Instructor of Pediatrics at Virginia Commonwealth University School of Medicine’s INOVA Campus.
