Rural Albertans struggling to find end-of-life care close to home: report

An empty hospital bed. (File photo)

Rural Albertans nearing the end of their lives are frequently faced with an "unfathomable" choice: leave their home to get the palliative and hospice care they need or die in the community without those supports.

This from a report by the Rural Municipalities of Alberta (RMA), which highlights the limited access to end-of-life care in rural Alberta and calls on the province to build a sustainable community hospice funding model.

About 80 per cent of hospice beds in Alberta are in Edmonton and Calgary, and another 12 per cent are in Red Deer, Lethbridge and Medicine Hat, according to the report.

There is a similar concentration of palliative care beds in urban centres.

Adding to this disparity of access, the report notes that rural Alberta is aging more rapidly and generally has a higher death rate than in big cities.

RMA’s recommendations include increasing the number of hospice beds throughout the province while paying special attention to where new beds are added to avoid increasing density in Edmonton and Calgary.

The report also acknowledges that where dedicated hospice and palliative care beds may be few and far between, community-based palliative care societies have emerged to provide many end-of-life supports.

If the province wants to develop a more equitable funding model for hospice care, it should incorporate the perspectives and experience of these volunteer organizations, RMA says.

"To improve the present system and prepare for the future, rural municipalities know that a sustainable community hospice funding model is needed as an essential stepping stone toward enhancing rural end-of-life care," the report says.

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Sundre is one of many towns without a dedicated hospice or palliative care bed in rural Alberta.

Diana Kleinloog, president of the Sundre Palliative Care Association, says that while there is community interest in expanding end-of-life services, and the province has recognized the need exists, they have struggled to find a permanent space that would allow them to provide hospice care.

"There is not yet anywhere in Sundre where we can make that happen within the guidelines that AHS holds for having a hospice care bed in use," Kleinloog said.

"In the meantime, our association is doing whatever we can to provide volunteers to help with people at end of life, wherever they are living in the home, in care facilities like the Sundre Lodge, or in the hospital itself on the acute care ward."

Over the past decades, the care association has been able to use a room in the Sundre hospital acute care department for end-of-life and palliative care, Kleinloog said.

The hospital staff work well with the care association to make these services available, she said. However, occasions still arise where the bed is needed for other purposes, and those seeking palliative or hospice care are transferred out to Olds or other centres.

Even without a standalone hospice bed, the volunteer-run palliative care association puts in hundreds of hours each year helping prepare people who are going to be faced with end-of-life care decisions in the near future, Kleinloog said.

One area of focus is delivering public education seminars about caregiving, supports and where to find them, and aspects of financial planning and wills that can easily be neglected.

RMA is recommending that a sustainable funding model for community hospice societies be funded by Alberta’s government, taking the responsibility off individual municipalities and donors.

The organization is also urging the province to consider updating its hospice care system before the rapidly aging population creates a spike in demand for end-of-life services.

"Now is the ideal time to introduce changes to the community hospice societies funding model precisely because of other changes happening, but also recognize that the introduction of such an important funding model must be thoughtful, collaborative, detailed, and aware of unintended consequences."