“Losing someone you really love brings a whole new meaning to the word ‘forever’” – Reflection Room® Participant
Talking about dying and death is not something we tend to do in Western society, but the COVID-19 pandemic has made death a focal point of conversation for more than 15 months.
As a global community, we are grieving loss of life on a mass scale. As individuals, we are grieving the deaths of friends, family members, colleagues, patients and even strangers whose stories we hear on the news or through word of mouth.
Pandemic restrictions have disrupted customary death rituals and traditions, forcing us to find new and alternative ways to individually and collectively cope, mourn and memorialize people who have been lost.
While death is the form of loss most commonly associated with feelings of grief, we are also experiencing grief in other forms (e.g., anticipatory, disenfranchised, chronic, complicated, masked, etc.). This is because of new types of pandemic-related losses that have unexpectedly impacted our daily lives and experiences within our home, work, school, social, care and faith-based communities, including the loss of common routines, traditions, jobs and financial security, in-person social interactions and celebrations. We have had to leverage technology and online platforms to facilitate elements of human connection we rely on for these different communities to thrive.
Long-term care (LTC) homes are an example of care communities that rely on interactions between residents, care providers, family and friend caregivers, staff and volunteer members. The COVID-19 pandemic has significantly impacted these LTC home communities on all facets of grief and loss. A disproportionate number of deaths, social isolation, cancelled recreational and social programming, removal of communal dining and restricted visitor access for family and friends has culminated in concerns for the mental, physical, emotional and spiritual well-being of LTC community members.
Coping with grief – what does the evidence tell us?
Grief has often been referred to in the context of the “five stages” model (denial; anger; bargaining; depression; acceptance) made famous by Elisabeth Kübler-Ross in the 1960s. More recently however, it has been recognized that there are many different types of grief, and the grieving process is often not experienced as progressing in a linear way.
The “dual process model” of grief, developed in the 1990s by Dutch researchers Margaret Stroebe and Henk Schut, has become a more widely accepted model of grief in the academic literature. It suggests that a grieving individual copes by alternating between confronting and avoiding grief and is buffeted by two types of stressors – loss-oriented stressors (for example, activities that highlight the loss) and restoration-oriented stressors (for example, activities that divert attention away from the loss).
Acknowledging and “naming” grief has been suggested to be an important step in processing loss in a healthy and productive way. Storytelling is a practice integral to many cultures and communities to support relationships through shared human experiences. In grief and bereavement research, storytelling has been demonstrated to have an affirming, healing effect on both the storyteller and on those who hear the stories through mechanisms of emotional disclosure, cognitive processing and building social connections.
So how can we leverage storytelling to help LTC communities cope with and heal from the pandemic-related loss and grief they have and continue to experience?
Healing and moving forward in community
Beginning in 2016, researchers at the SE Research Centre of SE Health and at Memorial University of Newfoundland set up the Reflection Room in 57 places across Canada. People were invited to read other people’s “reflections” about dying or death, or to write their own. More than 1,000 people have found the Reflection Room helpful in coming to terms with dying and death. Reflections on grief and loss left by visitors have included:
“I wasn’t there at first. You waited. I finally got there. You were there for me. I stayed. You said goodbye. I remember.”
“Dad, I draw on your wisdom every day. I sense your spirit protecting me. I miss you.”
“Sometimes it’s unfair – for those of us who work in palliative care – that we don’t have the opportunity to grieve the loss of our loved ones as others do. As we go through our daily work, supporting others through their death, dying, loss, grief journey, it is hard to put aside your own grief when it’s there – just as real as others.”
Initial findings from the Reflection Room installations included a focus on the several thematic elements: real appreciation for the opportunity to reflect and remember; feelings of regret running deep and experiences remaining in our hearts even though years or decades have passed; and expressions of gratitude for people, experiences and memories are central to the storytelling.
The Reflection Room could help LTC home community members name and engage with the losses and grief that they have experienced over the past year.
The Reflection Room is being installed in several LTC homes in Central Ontario. It can provide residents, staff and family and friend caregivers an opportunity to read about other people’s experiences of grief, dying and death, and to write about their own experiences. The Reflection Room offers an opportunity to do something about and with grief, rather than solely working it through internally, in our minds. Initial feedback from LTC homes has been very positive. “LTC leaders have shared their gratitude with us for providing a way to offer something meaningful back to their communities that have experienced profound challenges throughout the pandemic,” said Nancy Lefebre, executive director of the Saint Elizabeth Foundation.
The Reflection Room installations are supported by the Saint Elizabeth Foundation as part of its commitment to improving end-of-life care journeys, with the participation of Ontario Health Central. The installation project’s collaborators are the LTC homes, the Ontario Association of Residents’ Councils, Family Councils Ontario and the Centres for Learning, Research and Innovation in Long-Term Care.
The authors have no conflicts of interest to declare.