To live and die on the territory

How redefining palliative care is bringing end-of-life services to First Nations
By Jon Thompson - Published on December 20, 2017
Roy Crow is joined by his daughter/personal support worker, Maxine Crow, in his Naotkamegwanning Elders Centre apartment. (Jon Thompson)

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​NAOTKAMEGWANNING FIRST NATION — “Don’t sleep until my story’s done,” Lulu Belle Kabestra’s stepfather Albert Crow would tell her and the seven other children who were tucked in across the floor of their family’s one-room cabin in Naotkamegwanning First Nation (Whitefish Bay). She would stare into the gas lamp until its light blurred, his voice faded, and rest overtook her.

“Eventually, my mom told me, ‘He’s just telling you that so you fall asleep,’” Kabestra explains.

Crow was raising his family on the land, and his way of telling a story without a defined ending was a metaphor for the end of life in Anishinaabe culture, where death is not discussed before it comes. 

In 1990, Crow’s own 80-year story would come to an end. He fainted; then, against his will, band office workers drove him from the reserve of 675 people to the Lake of the Woods District Hospital in Kenora, 80 kilometres north. The hunter and trapper had never set foot in a hospital in his life. He refused the medication the nurses brought him until Kabestra insisted he follow the doctor’s orders. Crow would pass away in the hospital that week, and Kabestra would struggle with her decision to impose care on her father against his wishes for years.

“It took me a long time to get over that,” says the now 75-year-old Kabestra. “Why didn’t I listen to him? Why didn’t I say, ‘OK, we’ll take you home?’ ”

Her regret would come to play a role in redefining end-of-life services in First Nations across Ontario. A six-year research project based in Thunder Bay studying four communities has shown that ailing people can stay on reserve and out of hospital for longer with minimal investments in homecare and medical services in the community. While the project’s sample size was small, the model’s perceived success and potential flexibility is prompting the province to make investments in on-reserve palliative care in the near future.

When representatives of Lakehead University’s Centre for Education and Research on Aging and Health visited Naotkamegwanning to consult with elders on developing palliative care services in 2011, the room’s immediate reaction was shocked silence. The concept of palliative care — which emerged in the United Kingdom during the 20th century and then spread to other Western industrialized countries — was culturally offensive in a community where dying is a taboo discussion topic.

“White people, they plan, they even pick their own plots. Native people don’t do that,” Kabestra explains. “It’s just not acceptable until it happens. That’s when you talk about it — not before.”

At that 2011 meeting, Kabestra broke the silence to tell the story of her father’s passing in the hospital. She reframed the discussion to focus on keeping aging people in the community where they can be on the land, in the culture, and with family. Then one by one, elders voiced their own stories and wishes to stay in Naotkamegwanning rather than living in the hospital or Kenora’s long-term care facilities.

Elders in other communities echoed the desire to age at home. Lakehead’s research in three Ontario communities including Naotkamegwanning, Fort William First Nation, and Six Nations as well as Peguis First Nation in Manitoba found 87 per cent of respondents said they believed their community members would prefer to receive services locally if they were available and appropriate.

Many elders were also insistent on setting boundaries for cultural outsiders to be involved with their end-of-life care. A number of them had previously experienced cultural discomfort in hospital, and had heard rumours circulating about poor treatment in long-term care facilities. Many had attended residential schools and held a general mistrust for Western institutions.

They were especially concerned that bringing culturally alien palliative services to the First Nation could threaten traditional practices surrounding end-of-life care, which can involve large immediate and tight-knit extended families.

“I’ve heard people say they were born on the territory, they want to die on the territory,” says Holly Prince, the project manager for Lakehead’s Centre for Education and Research on Aging and Health. “When someone’s sick in hospital, we might have 20 or 30 people wanting to be there at the bedside. [Hospital] policies don’t allow for that. If [patients] have cultural values and teachings, sometimes that also conflicts when it comes to institutions outside of the community because they may or may not understand what’s going on.”

In 2013, the 10-month-long Wiisokotaatiwin project (the name means “taking care of each other” or “supporting each other” in Ojibwe) explored a new way to deliver culturally sensitive end-of-life care at Naotkamegwanning First Nation. The $30,000 pilot, funded by the province, ensured that family and culture remained the core of end-of-life care. Medical interventions were available when necessary — and were culturally directed by the community.

A researcher of First Nations descent herself, Prince documented the care models that were already in place in the First Nation’s culture and society. She believed two more elements were needed to help ailing elders stay home: namely, enhancing capacity in homecare, and consulting outside medical specialists to help manage the pain and symptoms of chronic disease.  

To connect community assets with medical services outside Naotkamegwanning, the leadership appointed Maxine Crow, a personal support worker professional, as  home and community care co-ordinator. (She also happened to be Albert Crow’s granddaughter.) Her first task was to convince skeptical elders, by explaining that the program would be under local control, so they didn’t have to worry about it betraying the culture.

“We had to try different ways to introduce it to our community,” she says of the organizing process, which took years to complete. She explained the program to the community in careful terms as she culturally adapted the concept of palliative care to avoid the death taboo: “It’s not about death and dying. It’s about taking care of you the best that we can when there’s nothing more the health care providers can do for you and your wish is to stay home for as long as possible.”

Existing health supports weren’t suited to terminally ill patients. A federally funded home care program in place since 1999 operated only during business hours on weekdays. A provincial program brought a nurse to the community just two days a week. With such a patchy system of home care in place, elders in need of care were being hospitalized an hour’s travel from the reserve well before their deaths — a month in advance, on average.

Crow was personally experiencing the failings of the system. In 2011, less than a year after the elders met with Lakehead University, Crow’s close friend was diagnosed with terminal cancer. The woman was able to go home to visit but was frequently hospitalized because the community had no professional capacity to manage pain and symptoms of chronic disease. She died in the Kenora hospital.

“The doctor hugged me and whispered to me, ‘She could have passed at home,’ ” Crow recalls. “He was on board with this. The pain and symptom management was the part where we needed help.”

Lakehead provided the framework for palliative care assessment and a plan to integrate case management it calls journey mapping. The university’s Centre for Education and Research on Aging and Health organized the pilot around the Kelley Model, which was developed by social work and gerontology professor, Mary Lou Kelley, in the early 2000s to bring palliative care to rural municipalities. Under the Kelley Model, the project lead, who is based in the community, organizes a team made up of locally based community support workers, as well as family and friends who volunteer their time.

Once that community support team is in place, the team identifies the services that still need to be provided — medical expertise, typically — and fills those gaps using outside service providers who can fill them, all building on existing programs and social assets.

In adapting the model to First Nations, researchers found northwestern Ontario hospitals were discharging patients home to their communities, falsely assuming homecare services on reserve were equitable to 24-hour care available in the region’s municipalities. 

Kelley’s model also had to be adapted to consider the standard of living in First Nations. “You need to take into account of health services in the model but they added, you need to take account of basic infrastructure — housing, clean water, road access, communication,” Kelley says. “You can’t assume the housing in First Nations is suitable for living, never mind dying.

“If you have third-world living conditions, you can’t do that” says Kelley. “None of the communities in our research were communities like that. They had reasonably good infrastructure. That’s why we could do it. Ontario is going to have to consider the whole issue of infrastructure. […]  We’re not saying through this research that every community can do this.”

Naotkamegwanning’s Wiisokotaatiwin pilot project served five elders, four of whom passed away during its 10-month trial. It established 24-hour, seven-day-a-week, on-call nursing care for the community and added a nurse practitioner one day each week to complement the existing two nursing days. It also introduced respite and emotional services for caring family members.

Although all four of the elders who died during the pilot drew their last breaths in hospital, their stays lasted just three or four days instead of the month-long stays that had been typical before the pilot. The project’s patients couldn’t die at home, she says, because “we weren’t able to manage their pain and symptoms. That’s one area where we still need to work on.” In the meantime, Crow counts the initiative as a success because it shortened hospital stays at the end of patients’ lives.  

While pilot projects in Fort William First Nation and Six Nations have shown similar results for elders in communities adjacent to municipalities, Kelley says the Naotkamegwanning example demonstrated that targeted interventions can improve end-of-life care even for small First Nations communities where members have to travel far to receive most services.

“They [governments] can’t say any longer, ‘We don’t know how to solve this problem.’ We’ve proven if you have the right pitch, if you give them enough money and control of how they spend it, First Nations communities can deliver this themselves.”

The promising results of the pilots bolster the lobbying efforts of the Chiefs of Ontario, who have been arguing in favour of First Nations controlling more health care services directly, rather than having the province deliver them.

The need for 24-hour nursing and personal support worker availability in First Nations was also a key recommendation of a provincial First Nations Advisory Committee’s report last June. It emphasized the importance of aftercare, bereavement, and spiritual care services, as well as respite care as it suggested that Ontario build up to 20 hospices across the province.
The province is now basing a major expansion of end-of-life services in First Nations on the pilot’s success. The Ministry of Health and Long-Term Care has granted Lakehead University’s team $2.5 million to train 600 front-line providers to deliver care in their own communities. Through Ontario’s 2016 First Nations Health Action Plan, the province is also committing $7,356,500 to deliver homecare and palliative care; how the money is used will be determined within each community. The figure is scheduled to double in 2018-19, with specific allocation depending on population and remoteness.

Crow says moving end-of-life care from hospitals back to the community is a form of cultural reclamation.

“We’re trying to bring it back to how we used to be — how we cared for each other.”

This is one in a series of stories about issues affecting northwestern Ontario. It's brought to you in partnership with Confederation College of Applied Arts and Technology. Views and opinions expressed in this article are not necessarily those of the college.

Ontario Hubs are made possible by the Barry and Laurie Green Family Charitable Trust & Goldie Feldman.

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