The importance of a medical community – beyond the obvious
By Karen Klak
I believe it takes a village to heal a child…
A community is a place where we feel welcome and connected, a place of trust and safety, and a place of compassion and kindness. For my daughter, Haley, one part of her personal community was our children’s hospital. She spent most of her nearly twelve years of life as a pediatric patient – sometimes in hospital, other times visiting various specialists and having scans done to treat and monitor two brain tumours and the effects of a cerebral stroke.
Her numerous visits to the hospital, mostly as an outpatient, but for inpatient stays and treatments as well, were anticipated with excitement rather than trepidation by Haley. She was the only one of my four children who would say, when not feeling well, “Take me to the hospital.” Whereas for the others, the avoidance of the hospital was used as a motivator, as in, “you have to keep drinking your fluids or we will have to go to the hospital.”
Over the years, I marvelled at the number of people we encountered along the way – health care providers, non-medical hospital staff, volunteers – it seemed that while a number of people where there to tend her immediate and concerning medical needs, others cared for her whole being – bringing her joy in the form of a meal, a clean room, a school lesson, helping her take a bath, and bringing activities to her to occupy her time, entertain her, and give her purpose on long hospital days. What amazed me is that while these people often worked one to one with Haley, their cumulative efforts tended to her overall physical, mental, emotional, and spiritual needs, and many looked after me as well! They worked seamlessly, interspersing their supports throughout Haley’s hospital days and appointment visits without all bombarding her at the same time. They instilled in her a sense of community, one by one, giving her confidence in the world around her. They were our community – and became our extended family – especially during the final eight months of Haley’s life, when we lived much of the time at the hospital.
That sense of community within the hospital was evident to me throughout Haley’s journey. A few weeks after she died, we were told that the staff had a gift for our family. They had created a blanket with photos printed on it (copied from an album Haley had at the hospital), and so many signed with sweet messages and precious memories of their time with Haley. When we stopped to pick up this thoughtful gift, I ran into a child life specialist. It was a balm for my aching soul to see her, and to see many others who had been our village throughout Haley’s final months of life. As she gave me a big hug, I was shocked to hear this professional say “We miss Haley so much! We miss all of you!” I thought the relationship went one way, that it was me who felt a closeness to this community who had truly lived this experience at our sides, but apparently, as this sentiment was echoed by others, the feelings were reciprocal. I was in awe and so touched that they saw us as much more than a job, but as people.
I was also told that they had held a small gathering after Haley died – any staff member who wanted to attend was invited to honour Haley by lighting a candle, sharing laughter and tears, and simply being together as a community who had lost a beloved member. This was something the staff did for themselves and for each other – self-care and mutual solace undertaken as a community.
When my husband and I walked out of the hospital the day Haley died, we were not only leaving our daughter behind, but also the caring and compassionate hospital community that had walked the journey with us throughout Haley’s life. I don’t know if a hospital community realizes the unforgettable support it provides to families, but I hope they have a small sense of how much their kindness means to us.
I recall a story I loved to read to my kids when they were little, called Franklin’s Neighborhood. Franklin, a turtle, was asked by his teacher what he liked best about his neighbourhood. He pondered the question, thinking of all the places he liked to visit and things he liked to do. In the end, he came up with the perfect answer. It was the people that he liked best, for that is what makes a community (I would always get choked up when I read the ending – that little turtle nailed it).
The same is true in the medical world – people can make or break an experience, and when they are collectively united for the good of the patient and the patient’s family, they can turn devastating and traumatic moments into an experience that is remembered with love and gratitude. Those moments of connection and humanity are what help families like mine survive the most heartbreaking experiences. I believe we need to nurture a sense of community in health care more than ever in this pandemic world. That sense of community will create healing, hopefully of bodies, but most importantly, in the hearts and minds of those receiving care and their families.
I have written a book about Haley’s life called happy faces only – the story of a little girl who lived, relaying her medical experiences that were woven throughout her life. It is very much a story of the community that supported Haley and our family, both within the hospital and beyond, and I shudder to think what a thin volume it might be if our story was taking place now. Knowing how much that community support meant for Haley, and for all of us during that time and later, as we grieved her loss, I wonder if there is a way to remind staff of how imperative it is to include the non-medical side of things, especially during this difficult pandemic time when a patient’s access to their natural family and friend community of support may be greatly restricted during a hospitalization or medical challenge. I recognize that staff are exhausted by the added demands of the pandemic and may be barely getting through their tasks each day, but the simple kindness, the compassionate humanity, the brief moments of connection – those are the seemingly small yet crucial things that our medical villages do to tenderly hold and heal a child, or a patient of any age – and their family.