Talking about death

Adam MacInnis
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Research project looked at palliative care in Pictou County

NEW GLASGOW – Death and the process of dying is a topic that few people want to talk about, let alone research.

But for Dr. Wanda Thomas Bernard of Dalhousie University’s School of Social Work, it’s a subject that has taken on special significance. Her own interest was sparked when she witnessed her own mother’s journey through palliative care. Since then, the Order of Canada recipient, has been involved with several projects on palliative care and in particular how it is experienced by minority groups.

Her most recent project was in Pictou County and explored the knowledge, beliefs and understandings of options and services available to individuals and families at end of life in the African Canadian, First Nations and Immigrant communities in Pictou County.

Participants of the study shared their experiences about palliative care, and spoke of the barriers they faced – cultural, racism and financial.

“Our project is the first time research on palliative care services in rural Nova Scotia has been done. Until now, there has been no evidence or voice,” said Bernard who was principle investigator. “We hope that what we have learned will help other organizations recognize the importance of recognizing and supporting culturally diverse people.”

Pictou County Health Authority’s palliative care program is comprised of a six-bed inpatient unit located at the Aberdeen Hospital, and a community based program that supports up to 100 clients in their homes or in long term care facilities.  The Aberdeen Palliative Care Society supports the program with financial and volunteer resources.

The research team was a partnership between the Pictou County Health Authority’s Primary Health Care team and community health board members.  It was funded by the Department of Health and Wellness (Primary Health Care).

As they did the research, Bernard said there were a couple things that surprised her. First was the level of grief still felt by caregivers interviewed, despite the fact that it had been years for many since their loved one had passed.

“The level of grief and pain that people were still experiencing having cared for a loved one. It was difficult to witness that,” she said.

Also pleasantly surprising to her was the high level of knowledge of the system in the African Nova Scotian community in Pictou County. She said they had used it frequently and were familiar with the various services.

Also of note was the number of people who by name mentioned Dr. Gerry Farrell, Director of Palliative Care.

“Anyone who used the service talked very positively about him,” Bernard said.

One area that she did find was lacking was among the Pictou Landing First Nation, where there was a lack of knowledge of the palliative care system. For instance she said, there is a misconception that palliative care only happens at the hospital, but there are many options including choosing to stay in your home with health professionals coming to see them.

She made some recommendations in her report that would address the weak areas. One is for peer grief counseling. She said it would help those going through the system, to have people within their own community be able to talk with them.

One way the PCHA is already taking action to create more minority inclusion is by reserving spots in their volunteer training sessions specifically for minority groups.

Bernard said it’s nice to see her recommendations being put into effect.

“It’s incredibly gratifying to engage and see this happening,” she said.

Death is inevitable, but knowledge can greatly affect how a person’s last days are spent whether at home or in hospital she said.

She knows from her own experience how scary it can be when a loved one is placed in palliative care. But she believes that others will find, the same as she did, that with more knowledge will come more comfort.

Organizations: Pictou County Health Authority, Dalhousie University, School of Social Work Primary Health Care First Nations Aberdeen Hospital Aberdeen Palliative Care Society Department of Health and Wellness

Geographic location: Pictou County, NEW GLASGOW, Canada Nova Scotia

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