No time to grieve: Inuit loss experiences and grief practices in Nunavik,Quebec

The context of end-of-life care in Nunavik

Nunavik, one of Canada's four Inuit regions, includes 14 fly-in communities located within the northern borders of the province of Quebec ranging from populations of 225 to 2,700 persons; four communities have over 1,000 habitants. Thirty-seven percent of Inuit in Nunavik are under 14 years of age. Less than 5% are over 60 years old. Inuktitut is the primary language spoken. The medical support offered to families providing EOL care depends on the size of the community. EOL care in Nunavik communities is usually provided by family, community members, local health workers and interpreters, onsite nurses, and either visiting or resident physicians (Hordyk et al., 2017a). Each Nunavik community has a health center staffed by a minimum of two nurses; larger communities have a designated home care nurse and one or more resident physicians. Two communities offer limited 24-h inpatient care. As most of the Nunavik population identify Inuktitut as their first language, nurses and physicians rely heavily on local interpreters to provide care, a challenging task for both (Hordyk et al., 2017b).

The grief that persons experience preceding and following the death of a loved one is accentuated by the challenging context in which care is offered. These complications are familiar to many Indigenous communities where logistic, demographic, geographic, environmental, institutional, interpersonal, socio-cultural, linguistic, and historical considerations shape palliative care (Caxaj et al., 2018; Hordyk et al., 2016, 2017a). Families providing care are often simultaneously confronted by the reduced physical and relational capacities of patients nearing the end of life and increased economic stress related to loss of income or costs related to care (Lobb et al., 2010; Payne et al., 1999). There are few respite services available for Nunavik patients and caregivers (Hordyk et al., 2017a). While efforts are made to provide the formal and informal support structures needed for patients and families to remain in communities, patients may need to be flown far from family and community to one of the two hospitals in Nunavik or to a hospital in Montreal (Hordyk et al., 2017a). When sent to the South for care, patients are often accompanied by one escort, and a small number of additional family members can be provided plane tickets by the local health board when the patient is close to death. Costs for travel of extended family can be prohibitive, with regular flights between North and South costing between CA$2,100 and CA$3,500 per round trip. However, Nunavik's primary airline, Air Inuit, provides compassionate travel fares for bereaved persons: a reduction of 75% for Inuit attending funerals outside of their communities and reductions of 50% and 75% for friends and family members of seriously ill patients.

Grief, mourning, and bereavement

The terms grief, mourning, and bereavement are often used interchangeably in the literature to describe a person's reaction to death. Grief can be attributed to an experience of loss that is non-death-related, and mourning is often used to describe a public response to death. Grief theorists emphasize the multifaceted, unpredictable, and complex aspects of the grief, one that is highly individualized and influenced by factors such as sex (Doka & Martin, 2011), age (Walter & McCoyd, 2015), culture (Stroebe & Schut, 1998), and the circumstances of death (Nader, 1997; Parkes & Prigerson, 2013).

Zisook and Shear (2013) have described grief as a process within which persons vacillate between accepting and resisting the reality of death and within which persons may experience widely varying emotional, cognitive, social, and behavioral reactions to the death. Though feelings of grief may come and go, grief can eventually become integrated into the life and identity of the bereaved person such that they can continue to function and develop ongoing relationships. In certain circumstances, however, a normal range of emotions experienced by a griever can become debilitating and cause enduring suffering and functional impairments. These grief experiences have been characterized via an array of terminologies and diagnostic criteria such as disenfranchised grief (Doka, 1989), pathological grief (Horowitz et al., 1993), complicated grief (Prigerson et al., 1995; Shear et al., 2011), traumatic grief (Prigerson et al., 1997), and prolonged grief (Boelen & Prigerson, 2013). In terms of medical diagnostic categories, the DSM-5 (American Psychiatric Association, 2013) has chosen the term “persistent complex bereavement related disorder” to categorize this, and the ICD-11 (World Health Organization, 2018) “prolonged grief disorder.” Criteria in both instances are similar, though the DSM-5 suggests 12 months and the ICD-11 six months as the period in which debilitating grief-related symptoms begin to be of concern from a diagnostic standpoint. In these instances, emotions become dysregulated as feelings of shock, disbelief, and anger persist and the griever may have repeated and inescapable images about the circumstances or consequences of the death (Shear et al., 2011). Such a reaction can result in sleep disruption, impairments in daily tasks and relational functioning, is associated with increased use of drugs and alcohol, and may manifest as suicidal thoughts and gestures (Shear et al., 2011).

There are few models, theories, and interventions specific to grief within Indigenous contexts. This lacuna has persisted despite significant experiences of grief due to loss of Indigenous territory, cultural practices, language, and elevated mortality rates. Notably, Wesley-Esquimaux (2007), writing of the impacts of colonialism on Canadian Indigenous populations, identified that colonialism rendered Indigenous people traumatized on a spiritual, physical, emotional, and psychic level, leaving a “profoundly deep and unresolved grief” (p. 8). In her analysis, she argues that “the debilitating effect of grief was the result of unremitting losses that just kept happening” (Wesley-Esquimaux, 2007, p. 8). Others have noted that within Indigenous communities, differences in religious, cultural, and social beliefs and practices may determine the degree to which grief is acknowledged, addressed, and supported by others (Kaufert et al., 1999; Preston & Preston, 1991).

Contemporary death and burial traditions in Nunavik

Death- and grief-related beliefs and practices pre-dating the influences of colonialism and the accompanying Christian influence have been largely eradicated from Inuit communities. In Nunavik, 94% of the Inuit community identify an association to Christianity, with the large majority indicating ties to the Anglican Church and the rest affiliated to Full Gospel/Pentecostal churches (Statistics Canada, 2011). Many communities have respected community leaders or elders designated to bring news of local and more distant death to family members; these are known as Tutsalukkaijiit or messengers, in some dialects. These persons volunteer their time, often providing emotional and spiritual support to the family in the immediate aftermath of death. With the arrival of the internet (in 2004) and consequent access to social media such as Facebook, the role of these messengers was at times being usurped and Facebook posts regarding a death could augment the shock and suffering of the receiver.

Funeral and burial practices in Nunavik vary between communities. In some communities, nurses prepare bodies for burial. In many communities, two or three members of the church-based women's auxiliary assist a family by washing and preparing the deceased for burial. As one interpreter described, this can be a difficult job, especially in the cases of sudden and violent deaths: “it is not a fun job. It can be depressing.” She went on to explain that their local auxiliary was considering asking the health center to take responsibility for preparing the bodies of the deceased in their stead. Between the death and the burial, the body is usually kept in an indoor or outdoor morgue. Only occasionally are bodies kept in the home or church. Depending on the community or circumstances of the death, the coffin may be open or closed for visitation and the funeral service.

When Nunavimmiut die in Montreal or when the deceased is transported south for an autopsy, a Montreal funeral home prepares the body for burial after which the body is flown to the home community, usually in a simple pressed wood coffin. Family members are not permitted to touch the body before it is sent to Montreal for an autopsy. A nurse described such an instance in which a mother's suffering was compounded as she wanted to embrace her son who died suddenly in an accident but was not allowed to do so. In the case of autopsies, the funeral and burial can be delayed for days or weeks, leaving the family members in limbo not knowing when the funeral will be held, thus adding to their suffering. In the case of disappearances on land or sea, families are also kept in limbo, waiting to see if the person(s) will be found.

Men have an important role in the care of the deceased. In cases of accidental deaths and suicide, it is often men who are employed locally as first responders and firefighters who transport the bodies to the health station. Additionally, men are responsible for making coffins (usually a simple plywood design with a small cross) and operate the heavy equipment to prepare the grave for burial. Notably, there are no crematoria in Nunavik. Men also have the role of pall bearers during the funeral, a role that includes placing the coffin in the bed of a pickup to be transported to the cemetery. To our knowledge, there were no grief support services offered to these men as related to their roles. An Inuk expressed concern over this, saying, “we have to consider their mental health … it takes up a lot. It's heavy.”

The date and time of the funeral is announced on local radio. In some cases, a small pamphlet with a photo of the deceased and a written text may be given to attendees. In many communities, schools, municipal offices, and businesses, including grocery stores, are closed during a funeral. Funeral services are open to anyone who wants to attend. There are no child care options during funerals, and so babies and toddlers are also commonly seen at funerals. Young children and youth may arrive with or without family or will attend the services unaccompanied and with their peers as they would any other community event.

Funeral services across Nunavik are directed by a priest or lay reader and held in the local Anglican church (see Figure 1). They follow a prescribed liturgy including scripture reading, hymns, prayers, and a religious message. Attendees are invited to share eulogies. Adults, youth, and children are invited to place flowers (usually artificial, given the climate) on the coffin at the front of the church. Attendees then line up to offer condolences to the family and proceed to the cemetery (see Figure 2) for a short song and scripture reading led by the same priest or lay reader.

Grief and bereavement in Nunavik

In response to questions about the residual and cumulative impacts of grief for those providing EOL care, Inuit participants shared that historical grief-related beliefs cast a shadow over present-day practices. They recounted that, as in the past, grieving publicly after the burial was not common as many believed that this could have a negative impact on the deceased going to heaven. Though little was known about traditional grieving practices in Inuit communities, an Inuk woman described how she was told by her elders, “Don’t grieve too long. Don’t grieve for a long period of time or you stop that fire of living … that energy that you have.” Her understanding of this advice was that in small nomadic groups, family members who lost a loved one had to return to the tasks of the day, whether hunting, cooking, sewing, fishing, or establishing shelter, in order that the family could survive. There was no time to grieve. Others described historic teachings that the soul of the deceased could not proceed to the next life if the griever did not let go. Though these teachings were increasingly challenged, both Inuit and non-Inuit participants stated these teachings shape people's grief experience to this day.

Post-burial grief practices

The belief that grieving must end with the burial service was prevalent among members of the four communities that we visited. One Inuk woman stated that people are usually very helpful prior to and during the funeral, bringing food and making sure the funeral service and burial run smoothly, but are less present afterward to accompany the grieving; “People are very good about that up north I find … but once the body's buried, it's like they’ve done their part; that's it.” Another explained that this reticence may be rooted in traditional teachings: “There is a myth about people who grieve too long … that ‘I’m trying to get to heaven and will not make it to heaven because you’re crying too much’; the person's tears will make the stairs slippery.”

One Inuk participant summarized how expressions of grief are shifting for many Nunavimmiut today. She used the term “in-between generation” to describe how people were transitioning from old to new ways of coping with loss. The new ways allow for more expression of emotion and conversation concerning the deceased. A woman speaking of the death of a child noted that after the funeral, “that's the time when you are starting to feel that you don’t have the person anymore. That's when you needed to be heard I guess, ‘cause when you talk about it, it becomes easier.” An Inuk community worker discussed the loss of her grandfather and challenged what she had been taught:

Here in the community, they say when somebody passes away, for them to rest in peace, you have to just let them go. But for some, it's very hard to just let someone you love go … you don’t need to let go of someone who passed away.

Some families now engage in collective practices to commemorate a death after the funeral. As one Inuk participant described:

After something tragic happens in their family or they’ve lost a family member … a lot of them go to the land. When they are on the land, they do a lot of healing … just being in a tent, remembering their memories of their loved one.

She also stated that some may increase church attendance after a death as singing and praying in a collectivity may provide an emotional release. The option to go out on the land is not possible for all families, however, because of increasing costs associated with the supplies and transportation needed for such excursions, such as the price of all-terrain vehicles, snowmobiles, and boats, as well as cost of fuel and maintenance.

One reason cited for these changing grief practices was Canada's Truth and Reconciliation Commission (TRC) held between 2008 and 2015. Inuit had been forcibly separated from their families and placed in residential school facilities often far from home for a part or the duration of their childhood (TRC, 2015). Many school attendees had been separated from their families, had been forced to renounce their culture and language, and suffered lifelong consequences. During the TRC hearings, a team of four Inuit women, known as the Inuit Values and Practices Team, was convened to travel to Nunavik communities to facilitate group healing opportunities for survivors. According to members of this team, these group sessions and hearings opened the door to publicly acknowledge grief as an ongoing process and to recognize that grief can be rooted in the long-term effects of the residential schools and other harmful colonial practices. In addition, several Nunavimmiut were invited to provide or witness testimonies alongside of members of other Indigenous communities in the context of public hearings held in April 2013 in Montreal, Quebec. This collective sharing of grief, accompanied by emotional support services rooted in Indigenous values and traditions, contributed toward allowing persons to acknowledge long-term grief.

In 2019, the Canadian government alongside several Inuit-serving organizations, including Inuit Tapiriit Kanatami, launched the Nanilavut Initiative (Nanilavut translated as “let's find them”). Their database includes information concerning 4,500 Inuit who were displaced for medical treatment during the height of the tuberculosis epidemic between the 1940s and 1960s. They strive to offer information concerning where individuals were treated, died, and were buried, though this information is not always available. They also provide funds for travel for Inuit family members to visit the burial sites of relatives, commemorative activities, gravesite enhancement funds, and health support if desired.

The burdens of grief

Though there are no official statistics available to identify the numbers of unexpected deaths in each community, the sheer amount of loss described by Inuit participants was described as a barrier to adequately grieving. Families and community members are intricately interwoven and, as such, everyone is personally affected by all deaths in their extended community. As one Inuk put it, “People do not have time to grieve. There are too many deaths.” These multiple grief experiences were described as “a never-ending experience of grief that was like forever.” The consequences are important, leading a school administrator to state that this accumulation of grief and lack of resources to address it meant that “people go a little crazy after a while,” crazy being a term that she used to indicate a high level of distress. We spoke with an Inuk counselor who herself felt inadequate to support students and related this to her own struggles as a mother to respond to the needs of her teenage son who had lost four classmates to suicide.

Those who had lost family members or friends to suicide could be socially alienated by the traumatic circumstances of the death, the ambivalent support responses of community members, and by their own feelings of shock, anger, and guilt. An Inuk counselor described that when people experienced loss due to suicide or another kind of violent death, “they have more bitterness and uneasiness with themselves … this can be toxic.” A father who had lost his son to suicide described how in the aftermath, each family member isolated themselves and the loss touched each of them differently: from the siblings who were the first to find their brother, to the mother and father, each with their unique relationship and, consequently, their own interpretation of his actions.

Importantly, many Inuit participants spontaneously contextualized their grief experience within historical accounts of family and community losses due to colonial acts of violence. The grief that they felt from the terminal illness and death of a loved one was inseparable from these histories and the family trauma that had resulted. Several participants recounted being forcibly separated from their parents for months or years when placed in residential schools or in hospitals with a diagnosis of tuberculosis. Some described forced relocations to communities where they were placed in villages with clans with whom they were either unfamiliar or adversarial and who had different dialects and customs. Livelihoods were threatened when they were placed far from their familiar hunting and fishing grounds. Some described the mass slaughter of their sled dogs, sources of transportation between summer and winter camps and of access to food sources, many having been bred by families for generations. ¹ Reference was made to the loss of personal and cultural identities following these traumas and the intergenerational impact perpetuating the suffering. An Inuk educator observed that because this suffering was not explicitly the result of a death, per se, the accompanying feelings of grief and loss were often not recognized or openly acknowledged in communities as legitimate reasons for grieving.