This piece is a collective effort by an international group of scholars and practitioners in the International Work Group on Death, Dying and Bereavement. Our Public Health sub-group, Lauren Breen of Australia, Daisuke Kawashima of Japan, David Roth of Germany, Amy Chow of Hong Kong, Mary Ellen Macdonald, Karima Joy and Susan Cadell, all of Canada, recently published a paper on grief literacy. With the COVID-19 pandemic, we have been thinking a great deal about grief in this context. With the advent of COVID-19, we have co-written this piece about grief in the pandemic.
So much is being lost in the midst of the COVID-19 global pandemic. We have lost our routines and many freedoms. Many people have lost their jobs. We have lost the ability to visit freely with one another and, in some cases, to go outside our homes. And some people have lost their lives while others have lost the opportunity to be with people who are dying or grieving.
Grief is a normal and natural response in this time. Grief is a response to loss that affects our physical, emotional, behavioral, social, financial, and spiritual lives. It does not only occur in response to death; any loss can cause us to grieve.
Social context plays a huge role in our experience of loss. “We live in communities and societies that are becoming increasingly fragmented.” This is how we began our recent article on grief literacy in the journal, Death Studies. We are now at risk of further fragmentation. We need new ways to stay connected with others at this time.
Grief literacy provides a way forward. Grief literacy calls on all of us to be better acquainted with grief so that we can support ourselves and one another. We define grief literacy as the capacity to access, process, and use knowledge regarding the experience of loss. This is a capacity we all need in the midst of this pandemic.
Grief literacy extends the compassionate communities movement. The idea of compassionate communities is to challenge the professionalization of health care and palliative care by empowering communities to care for their citizens. One of the key elements is equity: everyone should have access to quality care at the end of life. The compassionate communities movement harnesses the assets of each community in order to facilitate increased awareness and conversations about death and dying.
While there are burgeoning movements that increase death literacy, these sometimes forget grief. Death cafes, for instance, have explicit instructions excluding active grieving. The compassionate communities movement is expanding into schools and workplaces and focusing on grievers as well as those who are dying. For instance, festivals like To Absent Friends invite people to share their grief stories. Greater grief literacy would enhance these kinds of events and opportunities.
The public health model of bereavement support further provides guidance for increasing grief literacy. To begin, it acknowledges that only a small percentage of the population of those who are grieving are at risk of ‘complicated grief,’ and therefore in need of specialized counselling. Further, the model demonstrates how 100% of people who are grieving can benefit from more information about grief and loss and compassionate, non-judgmental social support from family, friends, and community.
In the COVID-19 pandemic, we may feel grief at not being able to be at the bedside of someone who is dying. Many hospitals have forbidden visitors during this outbreak. So, even if the patient is dying from another illness besides COVID-19, their family and friends are unable to visit and accompany their death.
We may also feel grief because we cannot engage in familiar rituals when someone dies. We may not be able to hold or attend funerals. When able to attend, the need to distance may prevent people from touching others in order to seek and express support. Palliative care, community organizations and online resources are beginning to emerge with suggestions on how to manage this circumstance. More resources are appearing daily.
Feelings of grief may be exacerbated by social isolation. If someone died before the pandemic occurred, the person who is now grieving may no longer have access to their community. Grievers typically find solace in their routines of work and faith communities. These may no longer be available to them. People literally cannot reach out and touch someone so it is hard to support someone who is grieving.
So what can we do in the time of COVID-19 to be more grief literate and support one another?
First and foremost, be aware of your own experience. It is okay not to be okay. Knowledge of grief is a key aspect of grief literacy. Grief takes many forms and is unique from person to person. It does not have stages. People who are grieving can have oscillating feelings that can feel like a roller coaster or waves. Just like when we are advised to put on our own oxygen mask before helping others, it is important to understand your own experience before seeking to support someone else.
The notion of grief literacy also includes skills. Some of the skills needed are compassionate listening, being able to ask questions in a sensitive manner, and being able to help individuals needing support to find resources. When we listen, we do not need to fix or minimise grief. We need to be able to ask about the feelings and experiences of those who are grieving even when it is painful for us to hear. Grief is painful. Knowledge about grief and our own experience of it can aid us in knowing where to access resources when other grievers are requesting that assistance. Not everyone needs professional help. A supportive friend who really listens can be so helpful.
Values and ethics are also important in grief literacy. Humans are relational beings with responsibilities for one another. We all care for and receive care in our lives. There will always be a need for a health care system, but this system may be stretched or even overloaded at this time. The compassionate communities movement, along with the concept of grief literacy, calls for some of this care to be provided in the community.
In these changed times, we need to reach out in old and new ways. We can continue to write letters and cards and send packages in the mail. We may need to connect via text, call, videochat, or social media. No one can fix grief but we can offer our attention and time to reduce the isolation that is felt when grieving.
It may be necessary to attend or view virtual funerals online. It may not be the same as being present but can bring solace to both you and the grieving family and friends. You can find a personal way to honour the memory of the person and demonstrate to those who are grieving that you have not forgotten the person who died. If you are able, you can make a donation to a charity of choice in honour of the person. You could create something that you keep to remind you of the person who died and you could share it with someone else grieving by sending a photo or video of the creation.
The COVID-19 pandemic has produced some lovely examples of adapted ways of honouring others. Chalk messages on sidewalks have been created as messages of hope; they could also be used for neighbours to express support for one another in grief. People have lined the roads, all at safe distances from one another, when a grieving family has driven by. In Ireland, the whole country has adopted a campaign to Shine A Light to honour health care providers as well as those who have died.
There are many examples, predating this pandemic, of people honouring the memory of someone by creating scholarships, getting memorial tattoos, creating art, and writing. There are also many examples of positive movements in response to this pandemic. Now, with our limited ability to be together in person, is a good time to be creative in how we remember those who have died and provide support for those who grieve them. One of the lasting legacies of this pandemic can be an increased ability to support one another in our grief.