COVID-19: The Grieving Challenge
By: Grave Dialogues, Death
Tags: Death, Design, Grief, Wellbeing

Deborah D’Amico, Fran Quintero Rawlings , Pam Sethi

This is a multi-part series about the future of death and grief, and making our societies more conducive places to recover in. This work is necessary, both because our resilience continues to be tested by the uncertainties of this illness, and because we have an innate need to reconcile and heal.

Introduction

In early 2020, life as we knew it fundamentally changed. In Canada, COVID-19 upended many knowns about how we organize and function every day, and almost immediately, societies began dissecting every aspect of this crisis: what this pandemic will mean for our health, the economy, society, education, job security and technology; the topic of COVID-19 became polarizing, with some declaring that mandated safety protocols were a violation of our basic human rights, while others reminded us that we were witnessing the unfolding of one big conspiracy engineered by the rich and powerful. In the midst of all this, one topic, arguably the most important, has gone virtually unaddressed. When both death and loss are the things we fear the most about this virus, how do we create space to acknowledge and process this grief especially in a climate so focused on rapidly responding and recovering?



Since the first few cases of this pandemic were reported, death, or ‘the number of dead’, more accurately, has been tabulated daily for our consumption, yet grief, and the deeper, more unraveling experience of losing someone to this illness has been almost entirely ignored.

We’ve used the loss of life to bolster political talking points, to reinforce public health policies, and on the global scoreboard as we track which countries are ‘winning’ this pandemic. We as a country, however, have not yet taken the time to talk about what it means to lose someone to this virus, to recover or make sense of it. Even as a (potential) cure is now in view, we are rushing towards it with hopes of returning to normal. But what does this mean, especially for those who have either suffered a significant health setback and/or said goodbye to someone in 2020? This pandemic has hijacked our ability to grieve and access closure, and without the right supports in place to process this experience, what does normal even mean?

Context

From a statistical perspective, and compared to many other countries around the world, it can be argued that Canada is not faring badly in terms of the loss of life caused by COVID-19. But is this the only real measurement of loss or success we value?

For the over 14,000 Canadians who have died, there are countless others who have been impacted by the pandemic, facing entirely uncharted, new ways of coming to terms with both life and death. For the most vulnerable in our society, these outcomes are even more profound; while this virus does not discriminate, we have witnessed how; older adults, people of colour, those in congregate living arrangements, low income individuals and families have been disproportionately affected. How do these communities move forward with any sense of trust, safety, or security?

This picture of grief is further compounded by evidence that we as a society are experiencing escalating rates of social isolation and loneliness. Before this pandemic, Canada was one of the world’s loneliest countries, tied largely to growing rates of financial independence, choosing to remain unmarried and a worldview that values and incentivies independence over interdependence. It is not surprising to learn, therefore, that this pandemic has further exacerbated these public health concerns.

‘The Desolate’, a group of Canadians who suffer from both loneliness and social isolation, saw a 10% increase in numbers over last year, from 23% of the population to 33%. While social isolation and social distancing have become prescribed ways of keeping us safe physically from a public health perspective, what it has done to our mental health and wellbeing has yet to be fully understood.

Then there are other secondary factors that are further complicating our capacity to grieve such as (but not limited to):

Seasonality — the inevitable ‘descent into winter’, which psychologist Vivian Hill describes as playing a critical role in how we feel about loneliness, as less daylight and colder weather can reduce our hours outside;

The displays of opportunism in the funeral services industry, as upselling and pressure tactics prey on the most vulnerable, even moreso during this pandemic;

The virtualization of our world, leaving so many unable to connect in this new reality, such as our elderly, who are having to accept the replacement of human touch with touch screens and telephone calls; and

Exclusive traditions — While many people do still turn to religion or other traditions to help them prepare for and engage with death and grief, there are a growing number that do not subscribe to religion or lack a place to go when seeking support with death and grief. Given that social integration and support are built through social bonding, when groups engage in activities such as shared “rituals, liturgy, song, dance, eating, grieving, comforting”, how do people find and foster similar social networks. This is especially true for older adults and other groups with limited social contact.

Grief during this pandemic is transpiring on both a micro and a macro level; that is, we are experiencing it in individual households, across communities, societies and globally, both with those close to us and at the same time, with everyone in the world. Our individual experiences with this virus may be different, but we’re sharing in this collective grief, loneliness and loss at a world level. So how do we actually acknowledge and share in these experiences in this current climate?

The Grieving Challenge

The first challenge we face is that there are too few options to grieve. In Canada, our societies, support systems and the infrastructure we operate in chronically ignores grief. As a culture, we marginalize this experience, push it aside. Our workplace policies and bureaucratic systems diminish grief, particularly during this time when our leaders and decision-makers are fully preoccupied with building up the most firepower against this virus.

Grief itself is a misunderstood concept in our culture. Taken from her book, On Death and Dying, Elisabeth Kübler-Ross developed a conceptual framework of stages of grief that aided the pioneers of the hospice movement. This framework also became part of modern cultural consciousness as the natural progression of emotions one experiences during grief. However, the model was flawed — it was not evidence-based, it was not relatable to many people’s lived-experiences and it was not even meant to be applied to the bereaved. It was actually developed and intended for people diagnosed with terminal illness.

We have to acknowledge that grief isn’t linear, or temporary. Grief doesn’t just go away. It’s messy, colourful and it stays with us like baggage. Anecdotally we’ve heard it described as a backpack: Sometimes you forget it’s there, and sometimes it feels like you’ve got a bunch of heavy textbooks weighing on your shoulders.

There are also whole new layers of emotions that we must untangle: guilt or survivor’s guilt more specifically, trauma, or regret for not doing more, despite the immense limitations this crisis has placed upon us. These feelings are intensified by a whole other level of loss we are experiencing — loss of the community connections we need to get through difficult times, or the routines we have such as getting outside or visiting places that give us comfort. As Pauline Boss from the University of Minnesota says about this pandemic, “it’s triggering anxiety about our own mortality…The anxiety we are all feeling right now is collective and understandable.”

How do we take this combination of new truths to begin designing strategies that puts people and their grief, and the right to mourn, at the centre of our thinking? Processing grief isn’t nice to have, it’s a public health need. This is the current challenge.

The Solutions We Need

With all this current talk about a vaccine and a view to returning to “normal”, we as a society need to consider the toll this pandemic is taking on our wellbeing. At minimum, we should be questioning our assumptions about how it will be to leave our homes, go back out into the world, be close to one another, and feel a sense of safety.

At the other end of the spectrum, we need to start thinking about ways to measure, assess and understand recovery of societies, the toll and trauma that sickness and loss of life has taken, particularly on our frontline teams and communities.

We need solutions that will help us unpack our grief, to make space for mourning and to ritualize healing in our society. This needs to be woven into the fabric of our everyday living going forward, and upwards into our public institutions and offices. We need to encourage dialogue, engagement and open discourse that is supported formally in all dimensions of daily life.

We also need to look less at returning to the way things were, and more at the long-term horizons to prepare for the rolling effects of this pandemic over the months and years ahead.We need frameworks that support conversations about death and grief collectively, the range of emotions that we can and can’t describe. Further, we also need to expand this into the infrastructure of our daily lives: our workplaces, social services, government and public spaces.

We need to intentionally and collectively make space for grief and loss, not only for those who have felt the immediate impact of losing someone during this pandemic, but for all of us. Our outcomes should be grounded and measured through a broad acknowledgment of these experiences across all levels of society.