Holland Bloorview families and staff came together for special celebration of life in the hospital’s Spiral Garden this summer to remember children who have died. Social worker Barbara Germon helped families plan the event. Barbara, who has been at the hospital for 32 years and currently works in our child development program, shares some of her thoughts about the celebration and coming to terms with grief.
On December 7, Holland Bloorview is hosting a workshop titled “Coping with the Loss of your Child at Different Stages.” Information about this event is available on the hospital’s website. The next celebration of life event at Holland Bloorview is June 9, 2018.
Can you describe what it was like to be at the celebration of life event?
The entire event was very positive and uplifting. You could see it was emotional for many who attended, but also a healing experience. The sun was shining and there was a lovely breeze. There was a staff musician playing guitar. We called the names of all of the children and then followed the parents to dedicate a ceramic butterfly to all children past and present. The butterfly was designed by an artist who works at the hospital. It was a very beautiful and moving experience. Several children, including brothers and sisters, and grandparents and other relatives participated.
What was your role in the event?
I led the committee which is made up of three parents and three staff. I wanted to make sure the day evolved and the outcome was what the committee envisioned it to be. I also had the honor of reading the names of all the children and reconnecting with the families.
Can you talk about the process of partnering with families and planning the event?
The experience of working on the committee with the parents was very inspiring for me. I really enjoyed listening to the parents and learning about what would be most meaningful for them in creating this day.
I know the event is important for families – can you talk about the significance of the event for staff members?
It offered staff who attended a way to reconnect with parents and honor the children they grew to know and love. There are some families staff hadn’t seen since the child passed away. It is a loss for professionals when a child dies. A memorial celebration is part of their grief process and how they come to terms with it.
As a social worker, what have you learned over the years about supporting families during end of life care and the grieving process?
Families of children with special needs feel a great sense of support from other families. They also feel staff who knew their child understand their journey. Some families may feel friends and family are unable to fully relate to their situation or know how to offer support, especially if the child was medically fragile. As a result, when a child dies, parents may feel more isolated. This is termed a type of “disenfranchised loss.” That is why it is so important that we take extra care to support families of children with special needs and help them stay connected to others who have walked a similar path.
I learned that grief is not linear and there is no set path. People move in and out of grief in their own unique way. It’s also important to particularly recognize fathers, as their grief can sometimes go unnoticed. Grief can take time and work and can catch people when they least expect it. It is very essential to support siblings as well. It is helpful for each family member to find a way to remember and honor their loved one and find meaning as they move forward.
What thoughts would you share with other clinicians if they are supporting families through this part of their journey?
It is not easy for us to talk about death. I think the more we are able to bring issues out in the open, the more comfortable we will be in our efforts to support families. When we talk about it we can feel more able to support each other and the families we work with.
Being a health-care provider can be emotionally challenging, how do you take care of your own mental health and wellbeing?
I believe strongly in the value of reflective practice. We need to acknowledge our own humanity so that we can support others in their journey. Self-care is a key ingredient to this process. I have to reflect on my feelings all of the time. When I feel I am overwhelmed, I gain strength from friends and family and take time for myself to refuel. It is important that we take time if we are going to support others.
How has Holland Bloorview’s approach to supporting families during end of life care and the grieving process changed over the years?
I think end of life care and grieving is starting to be discussed more. We are acknowledging this as a part of our work here. Some of our clients have complex needs. I am part of a Centres for Leadership group that is also looking at advanced care planning and starting these conversations with families before their child may become ill. We are starting to create a holistic approach to care and this means that sensitive issues can be discussed at every part of the journey.
What more can Holland Bloorview do to support families during end of life care and the grieving process?
We are hoping to provide more education to families and staff. We are also looking at different models of group support. Through advanced care planning we can open conversations earlier and begin to support families at all stages of the lifecycle. We want to everyone to feel more comfortable talking about grief. We hope families will feel that support is available if their child passes away.
What’s next for the celebration of life event?
We are hoping to have an annual event each June and we already have a date picked out for 2018. We are also planning an evening for families in December where we will be inviting a speaker to present on one of the many aspects of the grief journey. We have also talked about a coffee group to provide further support to families. The committee is discussing how we can provide more opportunities for siblings too.