When I read this article about how one in five Canadians were found to be “cynical spreaders” of the novel coronavirus that causes COVID-19, I was disappointed and disheartened. Angus-Reid found that “cynical spreaders” are flaunting public health rules at significant rates and participating in activities known to be risky in spreading COVID-19, such as socializing with larger groups of people and indoors.
But what I felt more than disappointment and anger was the immense wave of sadness that swept over me.
Sadness for my patients who are essential workers in harm’s way everyday; sadness for parents everywhere who are making the impossible decision to have their children return to school when there is no zero-risk situation versus trying to keep them home, educate them and work full time (if that’s even an option as not all parents can work from home); sadness for patients with COVID-19 who are dying in hospital without their loved ones; sadness for my hospice patients who are dying of non-COVID diseases but are still severely impacted by COVID-19 due to visitor and travel restrictions.
The collective grief from the deaths from COVID-19, lockdowns, isolation, physical distancing and full personal protective equipment (PPE) is so much for our society to bear right now.
I worry that it’s similar to the collective grief that the United States and the rest of the world endured with the terrorist attacks of September 11, 2001. However, there appears to not be the outpouring of grief, support and acknowledgement of this grief as was seen in 2001. This is not about comparing one tragedy with another — it’s about discussing how collective grief impacts us all as humans and must be addressed.
There’s a coming tsunami of complicated grief from this ongoing pandemic that distresses me. Complicated grief can be defined as “prolonged and intense acute grief symptoms accompanied by an array of complicating thoughts, feelings, and behaviors.”
It’s like the acute yearning, pain and debilitating suffering all last for years, rather than being able to morph into an integrated grief. I am so apprehensive of the repercussions that will come from complicated grief of dying patient’s family members and loved ones from not being able to support their loved one and one another during these difficult times. And this will be multiplied over the entire country and the world, and will affect us all for at least a generation.
U.S. Democratic presidential candidate Joe Biden spoke these words that so resonated with me at his Democratic National Convention speech on August 20, 2020: “I know how it feels to lose someone you love. I know that deep black hole that opens up in your chest. That you feel your whole being is sucked into it. I know how mean and cruel and unfair life can be sometimes.”
This so aptly describes the impact that grief has had on me personally when I’ve lost loved ones in my life.
I’ve suffered through the death of my childhood friend when I was seven years old under horrific circumstances; I’ve witnessed lingering deaths of significant people in my life who died from strokes and terminal cancer; I’ve ached from the miscarriage of my first pregnancy; and I’ve felt the excruciating pain of the sudden death of my first cousin when she was only 36, who was one of my best friends, in a freak highway accident.
Each loss has amplified memories and emotions from previous losses. These experiences have indelibly impacted my life journey and my life’s work. They have been critical life lessons regarding empathy for my fellow humans.
As a hospice doctor, I have had the true privilege of helping many patients and families traverse through one of the most poignant of life events in a family’s story. I’ve seen the benefit of quality family time that hospice care facilitates, where differences for the most part can be set aside, and how this type of healing communion can occur in the public gathering spaces of hospices I’ve worked in.
I’ve taken countless family photos for my patients for birthday and anniversary celebrations in hospice — joy amidst the poignant knowledge that a loved one is dying. Family processing along with the patient during these precious times are critical in paving the way for a healthier grief process — a grief that is deep and abiding, but also softened by the beautiful memories made in hospice that facilitates successful mourning and the integration of grief into one’s daily life.
This has weighed heavily on my mind during the pandemic. Shutdowns of hospitals, hospices and long-term care homes to visitors, for understandable (in the cognitive sense) public health measures denies families the ability to congregate and support each other as loved ones are seriously ill and/or dying.
Those who die of COVID-19 in hospital die alone in the ICU or medical ward. Loved ones can’t say goodbye in person, which from personal experience is one of the most agonizing regrets that surviving loved ones have to process and learn to live with. Even in hospice units, there have been limits of two or three family members for patients who are actively dying during the pandemic.
They must draw straws as to who can be in the room while the others wait in the car rather than have last birthday or anniversary celebrations where some of the last family photos with the dying person could have been added to the family album. Loved ones from outside of Canada are unable to visit their dying family members in their last days due to travel and quarantine requirements.
Further injury results because funerals too have been limited by the same public health concerns, and so the trauma of losing a loved one can’t even be alleviated somewhat by the support and comfort of hugs by a larger community in death rituals. All of this increases the risk of complicated grief.
Loneliness and isolation are causing debilitation for too many languishing in facilities without the joys injected by being cared for by loved ones. But even beyond family caregiver support, patients need their families and loved ones for a fundamental human desire of love and belonging. And the loved ones of dying patients need each other.
Too many encounters of losing a loved one during the pandemic will leave awful wounds, not dissimilar to what I experienced with the sudden, unexpected loss of my cousin, or what the U.S. experienced on 9/11. Death and dying in the future will unearth scars from the excess pain of experiencing loss during the pandemic for any reason, not just deaths due to COVID-19. Unfiltered pain will erupt. This will affect how their loved ones around them experience subsequent deaths in turn.
Trauma layered upon trauma, multiplied by many for one patient, and multiplied again by each person who has died for any reason during the pandemic. Complicated grief can increase risk for physical illnesses, depression, anxiety and post-traumatic stress disorder. The pain and suffering to come will be immense on so many levels and for years to come.
We must do everything we can to contain community spread of the virus in these re-opening phases so that people in hospitals and care facilities can benefit from the loosening up of restrictions safely. This includes reopening schools as safely as possible by mitigating known risks by reducing class sizes to allow for distancing, masks, ventilation improvements and appropriate staffing.
Containment of outbreaks with rapid testing and efficient contact tracing and isolation is critical this fall. We must engage with the cynical spreaders and determine how we can move anger and cynicism to empathy. Doing all of this could prevent further lockdowns and further family caregiver and visitor restrictions to facilities which could circumvent a generation of pain in how a family experiences grief, death and dying.
We really are interconnected and we are fighting a common enemy in this virus, not each other. We can be angry at the virus, but not each other. Let’s not lose sight of this.
Be kind by really thinking about the risk of COVID-19 in whatever activity you decide to partake in, and how you can support the economy but still be vigilant for yourselves and the larger community.
Be kind by wearing a mask and keeping your distance. Instead of going to a house party or bar, have a physically distanced visit with your friends at a park. Strive to be an “infection fighter” and not a “cynical spreader.”
By doing your part to contain the spread, you are contributing to our shared humanity. And that shared humanity has a certain shared experience — losing someone significant to you to death.
It may not be during or directly from the pandemic, but someone in your life will die at some point if it hasn’t occurred already, and you will experience the deep black hole in your chest that Biden vividly described.
To be human is to suffer; it is also not a zero-sum game and cannot be compared to another’s suffering. Knowing what suffering feels like though, wouldn’t you want to do what you can to ease the suffering of others? Your actions will impact how your fellow human beings might suffer with grief not only today, but for years to come.
Dr. Amy Tan is an associate professor of family medicine at the Cumming School of Medicine, University of Calgary. She is a hospice physician and is a researcher on advance care planning, community palliative care and grief/bereavement. She is also an organizer for Masks4Canada.
Image: Danielle MacInnes/Unsplash