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A few weeks before my wife Suzanne died of breast cancer, she wrote letters to our children, Alex and Sophia, then 18 and 14, to be opened after her death. It was an arduous task in that late phase of her disease.
Nearly five years later, on our daughter’s 19th birthday, with a father’s mixed emotions, I took her to get her first tattoo. Inked onto her forearm was the last line of her mother’s letter and it was in her mother’s handwriting: “Hugs. So many hugs, Sophia.”
It is possible to find beauty, even poetry, in grief because it is not a psychological disorder but a natural human reaction to profound loss. Grief may mimic a disorder, particularly in its early stages with a cascade of symptoms which may include insomnia, fatigue, wild emotional swings and even imagining that you hear someone’s voice or feel their presence.
“[Grief] affected my breathing and gave me pains in my chest. I just thought I might die from grief! It was a shock to the system,” one respondent said in a survey by the Canadian Grief Alliance (CGA), which I co-chair.
“Grief can come in waves,” another remarked. “You may be feeling better but then something triggers a memory of your loved one. Grief is not something you get over – it’s something we learn to live with and incorporate into our daily lives.”
In time, with compassion and understanding from others and toward ourselves, many of us rebound. We carry on. Alex and Sophia will always have grief over the loss of their mother etched in their hearts. After some difficult years, they resumed the trajectory of their lives, as did I.
But what scholars in this field know is that many people find it hard to rebound. For many, perhaps most, grief lasts much longer than expected. Not only the suffering but the symptoms – physical and psychological – refuse to be domesticated. That’s partly because relatively few Canadians know what to expect when they experience profound loss, making it difficult to help themselves or others around them.
For a minority, grief may trigger clinical depression or anxiety, substance use or even mental illness. Prolonged or intractable grief may affect jobs, productivity and the stability of relationships. This in turn imposes financial costs on families, employers, and health and social services.
Yet, because grief is a natural reaction to profound loss – not a mental illness – it has often been excluded from policy aimed at supporting mental health. This is a mistake. Healthy adaptation to grief is clearly an element of good mental health.
There are five steps toward this goal recommended by the CGA after a two-year project on grief literacy, funded by Health Canada.
These include launching community-based awareness campaigns and programs; developing the support and services that a public health approach requires; improving the training of professionals and volunteers who provide grief services; increasing data collection and research funding; and creating a Canadian Centre for Grief to co-ordinate policy in these areas.
Improving a patchwork of grief services
As part of the CGA’s two-year project, we surveyed nearly 4,000 Canadians, spoke to 300 experts and professionals, sponsored symposia on grief among children and youth through our partners at the Canadian Alliance for Children’s Grief, and built a website with rich, helpful content for people who have experienced a profound loss or are supporting someone who has.
Today, there is at best a patchwork of grief services. Many professionals – including doctors and nurses, emergency workers, social workers and even mental health specialists – have little or no training in how to support people who are grieving. To the extent that there are support services, they are often tied to a dying patient.
“After the patient dies, family members are dropped by the system and there’s no pathway to follow up,” we were told by one respondent during our consultation.
Unlike comparable countries such as Australia, Ireland and the United Kingdom, Canada has no infrastructure for addressing the effects of grief on society. We have no concerted national approach and no robust national institutions to address it.
When we have disasters such as the Humboldt bus crash, the Nova Scotia mass shooting or the now-annual wildfires that cause loss and grief on a large scale, we do not have public policy instruments to address the resulting human needs. Nor do we as a society approach issues such as the fentanyl crisis or the unmarked graves at residential schools with any systematic attention to the grief they engender.
In the CGA survey, just half of respondents said they felt their grief was well-supported. Nine in 10 said it was helpful to be asked about their loss. Yet, awkwardness, fear and social inhibitions often lead friends to avoid the topic, perhaps because we tell ourselves wrongly that we are doing the grieving person a favour.
Lessons from COVID-19
At the start of the pandemic in 2020, a small group of us were convened by the Canadian Virtual Hospice to form the CGA.
We foresaw a parallel pandemic of grief, not just because thousands of people were destined to die but because the extraordinary circumstances of the time meant that people grieving a death from any cause were denied the usual rituals of bereavement – the ability to be at the bedside, to hold a funeral, to feel the literal embrace of family and friends.
We rightly foresaw that the pandemic would bring other forms of grief – the loss of jobs and income, the loss of human companionship or the loss of pets who were sometimes intensely mourned in the isolation that COVID policies produced.
The CGA quickly obtained the support of 170 organizations, including the Canadian Medical Association, the Canadian Nurses Association and the Canadian Psychiatric Association, as well as scores of other professional associations and service organizations that shared our concern about unsupported grief.
After a two-year project, we recently published our next steps action plan which frames a strategic approach to grief literacy and services in Canada.
As we researched our report, we were struck by how underdeveloped Canada’s approach is, compared with similar countries. The U.K., Australia and Ireland have all adopted a public health approach to grief, often expressed as the “Irish pyramid.”
Most people (Level 1) manage their grief with the support of family, friends, workplaces and communities. We can help them through public education with the expenditure of only relatively modest resources.
A smaller number of people (Level 2) can benefit from more structured support, such as bereavement groups often led by volunteers. We can work on increasing the availability of such groups and improving the training for the volunteers who run them.
A smaller group yet (Level 3) will need specialized grief or mental health counselling from specially trained professionals.
The smallest group (Level 4) is the one with the most intense needs. It consists of people with complex grief who require the assistance of psychiatrists or other specialized therapists. We do not have good data in Canada, but in other countries this smallest group is usually thought to consist of about 15 per cent of those experiencing profound loss.
Our strategic plan includes five recommendations for moving Canada toward the kind of public health model of supporting grief that we see in other countries.
The first is to encourage community-based awareness campaigns and programs to increase the public’s understanding of grief. The idea is to help people help themselves.
The second is a federal government strategy aimed at developing the support and services that a public health approach implies. This strategy should be devised with professionals and organizations concerned with grief, other orders of government, Indigenous and racialized communities. It should identify promising approaches that could be scaled up and should include seed funding for priority populations.
The third is to improve the training of professionals or volunteers who help people deal with grief. This includes the establishment of standardized training for volunteers, as well as curricula and competencies for professionals. It would also strengthen the national grief network established by the CGA of people working in this area.
A fourth recommendation is to provide the information required for policy and program decisions that Canada lacks but other comparable countries have established. This means collecting national data, developing a grief research network and dedicating funds for grief research.
Our final recommendation is to establish a Canadian Centre for Grief that would co-ordinate these initiatives. This would be modelled on the highly successful Grief Australia, established three decades ago at modest cost. This new Canadian centre would support the development of policy at all levels of government as well as in the private sector.
It would give Canadian policymakers a capacity that their counterparts in other countries have but we do not: the ability to scale up quickly at times of emergency. For example, Grief Australia was able to respond quickly to the COVID-19 pandemic, as it had in previous crises, when governments saw there was a need.
Building a stronger Canada
Grief is not a partisan issue. We grieve because we are human.
In the last Parliament, all parties supported a private members’ bill introduced by Conservative Matt Jeneroux which provided 10 days bereavement leave for family members covered by the Canada Labour Code.
In the April election campaign, Prime Minister Mark Carney pledged to invest in infrastructure for hospitals, clinics and mental health. That infrastructure must include provision for grief. Besides addressing the suffering of our friends, families and neighbours, it is an investment in our human capital.
People who are coping with their grief effectively are likely to be happier in their families, more productive at work, and generate fewer costs for our health and social services. That will help build a stronger Canada.
