When a parent receives a life changing diagnosis for their child, the right words cannot take their pain and grief from them. However, a clinician who can skillfully hold heart-centric, connected conversations from diagnosis throughout the child’s life, will help prevent traumatic experiences. Communicating well in healthcare is essential to allow a parent to voice what they value, what they fear and what they don’t yet know. Interactions with clinicians during a seriously ill child’s life shape a parent’s grief journey, and this journey carries on long after a child has died.
I learned this through my own experience as a mother to our firstborn daughter, Florence, who was diagnosed with Spinal Muscular Atrophy type 1 when she was three months old. She was nearly three and half when she died in 2015.
From the deeply traumatic start of my daughter’s diagnosis over the phone, until a few months before her death, I struggled to accept and rest in my reality. The grief was deep, and the trauma from continually having conversations about her health, a health that was so very fragile and irreversibly declining, was a kind of pain I couldn’t quite name at the time, let alone walk with. But hobble along I did, trying to transform each day with Florence into something sacred and precious. These appointments and ER visits interrupted our flow. I felt unsettled in hospital and often under the care of clinicians who had been doing this work for a very long time. There was a certain hardness, and a repetitiveness to many of these interactions, but I was very soft inside. The hospital didn’t feel like the place to show this vulnerability. We met families that tried to support us in the diagnosis of SMA, but there was a lack of naming the grief surrounding the diagnosis.
We drifted along the pathway of care. Eventually, we knew we didn’t want to intervene with a tracheotomy, nor did we want her to lose her ability to smile. These markers we made when she was a baby helped guide us when she began to decline in her health. But, I needed more. At the time, I couldn’t name this need, as I felt I was barely keeping afloat. When seated with a clinician telling us how to use a new piece of equipment or under the blue light of the monitors at 2AM, I felt the deepest kind of dread and loneliness. Was there another way? I couldn’t propel myself to find someone I trusted to understand my experience and ask these questions. So, we treated Florence’s symptoms and we carried on.
When we were finally brave enough to accept care from Canuck Place Children’s Hospice, I discovered there was a much wider field of care for us. We were offered room to have conversations without the bulk of the talk centering on interventions and treatment. I could voice my worries about this trajectory, and about my fear that Florence would die in a trauma room without me next to her, which had already nearly happened. I always knew I wanted her to have a peaceful death, a death that wasn’t an emergency. What do we do to prevent this kind of death? I cannot let her die like that. What if I’m feeling something different about this care, can I share it with you? Do we have to accept every intervention? Can you help us discover what a ‘good death’ means for us?
Her end of life came swiftly, and our conversations with Canuck Place allowed us to prepare for a peaceful death. I was able to hold her, instead of watching her lay on a bed with monitors. I was able to accept her death and be present. I felt her life slip away, knowing I was as close to her as I was at her birth. We did it together. The permission, presence and peace that was held in that room changed my life.
Seven years after Florence died, I found myself trembling with nervous anticipation. I had signed on to be a Family Partner ‘Serious Illness Conversation Guide – Pediatrics* (SICG – Peds)’ Facilitator with Canuck Place. After months of preparation and training, we were live. On the Zoom call, I saw the clinician learners logging in and introducing themselves, and I felt a wave of emotions I had never felt before in a setting like this: capability, joy, excitement, purpose. So began the beginning of integrating my grief. This was not the only step, but it was a catalyst to my empowerment, which is a potent antidote to the fear of feeling deep grief.
For months, my grief was right there with me, threatening to burst all over the fuzzy Zoom window. When it was my turn to express why the SICG-Peds was so vital in clinical settings, I came back to the ER, ICU rooms, the exam rooms, and the stuffy offices. All these places where we didn’t receive any intentional Serious Illness Conversations. The SICG was only adapted for pediatrics in 2017.
I felt the relief of tears rolling down my cheeks. I didn’t apologize. I wanted them to be seen, to share how painful it was to feel alone in a bustling hospital, to be a strong woman who was often undermined by overwhelm, to live through the massive eruption of losing a child. And, I was present, ready to share this understanding and wisdom, clinician by clinician, conversation by conversation.
I’ve seen how curious clinicians can be. From the simple, “Should I give a parent tissues or leave the room when they cry?” to the problem with the phrase “I can’t imagine…”, no questions or observations are too small or complex.
We have to bridge the gap in care between parents with lived experience and parents who are facing and will face this brutal realm of parenting.
I’ve had the privilege and gift of co-teaching with an extraordinary team of facilitators. Though I am not a clinician, being welcomed onto the team as a valuable and significant member has changed the way I interact with my experience, advocate for myself and children, and communicate with others when there is uncertainty.
The standard institutional approach to working with bereaved parents is to leave them be. Not all bereaved parents are teachers, nor do they want to be, but if institutions and schools can work to integrate and compensate skilled bereaved parents as partners, they will discover that they hold a hard-won authority in this field, willing and able to hone their grief into a skill that will support families and clinicians to come.
Michaela Evanow is Parent Faculty with the Serious Illness Pediatric Education Program at Canuck Place Children’s Hospice and a Grief Companion for Bereaved Parents. She facilitates embodied conscious dance, exploring the ways movement can help us meet and tend grief. She lives in Victoria, BC with her family of five. You can find more about her work and her reflections at michaelaevanow.ca and her Substack.
* The Serious Illness Conversation Guide –Pediatrics© (SICG-Peds©) Education Program supports healthcare provider confidence and training on a validated conversation guide to use with pediatric patients living with a serious illness and their families. It was adapted from the adult guide (Ariadne Labs, 2019) for pediatrics by Canuck Place Children’s Hospice
References and Additional information:
Ariadne Labs (2019) Principles for customizing the serious illness care conversation guide. https://www.ariadnelabs.org/aria/
van Breemen, C (2018) Adapting the serious illness conversation guide for use in pediatrics. Journal of Palliative Medicine 21(12), 1683–1683. doi:10.1089/jpm.2018.0515
van Breemen, C. van, Lusney, N., Doherty, M., Castro-Noriega, E., & Siden, H. (2024). Education Initiative for Essential Conversations with Parents—Serious Illness Guide for Pediatrics (SICG-Peds©-Peds). Journal of Medical Education and Curricular Development, 11. https://doi.org/10.1177/23821205241298590
Van Breemen C, Lusney N, Hermansen A-M, Vang L. Bereaved Parents as Communication Workshop Facilitators for Clinicians Caring for Seriously Ill Children. Palliative Medicine Reports. 2025;6(1). doi:10.1089/pmr.2025.0022
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