Social capital and the great beyond

Canada Research Chair Barb Pesut  investigates palliative support in rural areas

First the good news: Palliative-care providers in rural and remote B.C. have a wholehearted champion in Barb Pesut, who’s been immersed in exploratory fieldwork since 2008. Her approach to interdisciplinary end-of-life care considers comfort, dignity and individual aid for patients and families—no matter where they live.

Now the bad news: It’s a sizeable challenge. The rate of elderly Canadians is growing exponentially, and almost one-fifth of B.C.’s population lives in rural areas. Geographically, culturally, or socially isolated from comprehensive healthcare services, more than 600,000 British Columbians reside beyond a 60-minute driving span to palliative-care beds.

“What’s required is a mosaic of services that can adapt to different needs of rural individuals,” says Pesut, Canada Research Chair in Health, Ethics and Diversity, and assistant professor with the School of Nursing at UBC’s Okanagan campus.

“Patients and families really emphasize quality of life and how they can live well together in the time they have left. And for many rural people it’s strongly connected to place—they really desire locations of death that work for them and according to their specific needs.”

Pesut and colleagues recently received more than $1.3 million in research grants, largely from the BC Nursing Research Initiative of the Michael Smith Foundation for Health Research, to investigate sustainable palliative-care delivery in B.C.

Pesut and her cohorts have interviewed more than 150 individuals involved with palliative care in rural areas of Interior and Northern B.C. Preliminary findings are not all rosy.

In rural communities, especially where hospitals have been closed or downsized, family caregivers and patients often have to go to great lengths to get palliative services, such as acute symptom and pain management. These caregivers commute from outlying areas with their terminally ill child, or with their elderly and infirm parent, over icy mountain passes or mud-choked logging roads to reach urban centres. Pesut has travelled similar routes, gaining a whole new respect for rural citizens and their barriers.

“Rural people really want 24/7 access to end-of-life care within their own community,” says Pesut. “These communities want some stability. They hope for more systematic types of programs uniquely adapted to, and owned by, their community—and which are not necessarily subject to changing models of healthcare.

“In the communities that do have some level of palliative services, healthcare providers go above and beyond. In many cases, nurses and physicians work off-the-clock,” Pesut says. “But what’s difficult is they end up putting together a sort of patchwork of services often based on a strong spirit of volunteerism, which works in the moment.

“From a rural perspective, volunteering is very often a way to give back to their community. There’s a synergy that creates belonging that is a huge amount of social capital toward healthcare. I don’t think in the formalized system we can ever really hope to replace this.”

Pesut’s ethnographic findings, for example, show the import of certain beliefs and values at end of life for religious and ethnic sub-groups, and this plays out in unique ways in rural areas.

“There are lovely adaptations within rural hospitals to meet the needs of First Nations patients and families. Within some rural communities there’s been a marvellous synergy between the generosity of the Sikh community to build facilities that meet their end-of-life needs, and they donate them back to the community to be used more broadly.”

“But what everybody really wants is a rural hospice,” she says, lauding major innovations in Williams Lake and pockets of developments being realized in other rural B.C. areas such as Quesnel and Nelson. “Unfortunately, there is no one-size-fits-all model.”

Pesut and her colleagues Carole Robinson, Joan Bottorff and Richard Sawatzky are research teammates in Trail-Castlegar’s TCARE program, which stems from a Peter Wall Solutions Initiative grant. The team is seeking a rural solution that best integrates all services to provide a coordinated, accessible system of support and education for palliative individuals and their families.

Palliative-care expert Brenda Hooper is part of TCARE’s augmented response program to enhance support services for people affected by life-limiting chronic illness. Hooper, a registered nurse and vice chair of the Greater Trail Hospice Society, says “having good end-of-life care is really about having some choice in the way things go, and having a little bit of control at a time when you don’t have very much control.”

The Greater Trail Hospice is, like most hospices in the Kootenays, an independent society backed by a small contract with the Interior Health Authority. “We rely on the community to really fund the lion’s share of the services that we provide,” Hooper says. “But we have a strong base of volunteers.”

To build workable programs for rural palliative care, Pesut’s research team aims to bridge amorphous gaps between professionals and volunteers, including: family caregivers, physicians and nurses, social workers, healthcare administrators, pharmacists, clergy, and funeral directors.

Overall, Pesut says, “There is a fine balance between an appropriate expectation of the community and what’s provided by healthcare.”

Watch UBCO-TV’s video feature about Barb Pesut’s palliative care research  in rural areas:

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UBC Reports | Vol. 58 | No. 4 | Apr. 4, 2012

Canada Research Chair Barb Pesut is a leader in rural palliative-care initiatives essential to an overall provincial health strategy. Tim Swanky Photograph

Canada Research Chair Barb Pesut is a leader in rural palliative-care initiatives essential to an overall provincial health strategy. Tim Swanky Photograph

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Marked for life

Barb Pesut’s formative experience in palliative care was 30 years ago on Christmas Day.

She was a student, working as a nursing care assistant in a long-term residential facility, keeping vigil at night with an elderly patient in his final hours. In a darkened room, she sat with him over a few hours as he died. It was her first experience with death.

“Something happened to me in that moment,” she says. “I remember having this profound and mysterious experience. I was deeply moved and became very interested in end-of-life issues from that moment on. I knew then, this is what nursing is really about for me.”

Recent Grants

Barb Pesut, an assistant professor with the School of Nursing at UBC’s Okanagan campus, was appointed Canada Research Chair in Health, Ethics and Diversity in 2010.

She was recently awarded two research grants:

  • $250,000 over two years from the Michael Smith Foundation for Health Research (MSFHR) through the BC Nursing Research Initiative as research co-leader, along with partners from Selkirk College, for Enhancing Educational Capacity for a Palliative Approach in Rural Nursing: A Research Demonstration Project.
  • $330,000 over three years from the Peter Wall Solutions Initiative—which includes partners MSFHR and Genome British Columbia, and research partners from the Communities of Trail and Castlegar—for Trail-Castlegar Augmented Response: Enhancing Supportive Services for Persons and Family Living with Life-Limiting Chronic Illness (TCARE).

Announced in September 2011, Pesut is a key researcher in a newly created province-wide network called the Initiative for a Palliative Approach in Nursing: Evidence and Leadership (iPANEL), a four-year initiative funded through an $800,000 grant from MSFHR. The partnership includes the Interior Health Authority, universities and the BC Ministry of Health.

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