Building Capacity, Bridging Gaps – The Evolution of Palliative and End-of-life Care in Alberta

Nick Walling, Canadian Hospice Palliative Care Association; Dr. James Silvius, Provincial Medical Director Provincial Seniors Health & Continuing Care, Alberta Health Services; Michelle Peterson Fraser, Provincial Director Palliative and End-of-Life Care, Provincial Seniors Health & Continuing Care, Alberta Health Services; Katrielle Ethier, Canadian Hospice Palliative Care Association

Acknowledgments: Lauren Roy, Director, Home and Community Care, Continuing Care Branch, Alberta Health; Aurora Leang, Provincial Lead, Palliative and End-of-Life Care Practice Development, Provincial Seniors Health & Continuing Care, Alberta Health Services; Dominika Barefoot, Provincial Practice Lead, Palliative and End-of-Life Care, Provincial Seniors Health & Continuing Care, Alberta Health Services; Allison Lacey, Manager, Systems Improvement, Home and Community Care, Continuing Care Branch, Alberta Health

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For decades, palliative and end-of-life care (PEOLC) in Canada was delivered by individual programs and directed by individual organizations. There was little in terms of overarching strategy or unified vision. Things started shifting in the early 2010’s. Palliative care practitioners and advocates pushed hard for change. They pushed for comprehensive, robust strategies for providing PEOLC to Canadians. Among the early adopters of this trend toward a unified provincial strategy for PEOLC was Alberta Health Services (AHS), Canada’s first and largest integrated provincial health care system.

At the time, there were a few robust PEOLC programs in both Calgary and Edmonton. While other zones had committed PEOLC advocates and providers in their communities, there often were not enough resources to address all their needs.

A geriatrician by trade, Dr. James Silvius has been in leadership positions in Alberta’s health care sector since 1990. He has held the role of Provincial Medical Director for Provincial Seniors Health and Continuing Care with AHS since the organization’s founding in 2009. He has been a part of the team advancing PEOLC across Alberta throughout his tenure at AHS.

“When AHS was founded, they initially placed PEOLC and geriatrics in the Senior’s portfolio, which was mine,” says Dr. Silvius. “And our mandate was to standardize practices and procedures and improve coordination throughout the province, which included outlining and defining shared terminology across Alberta.”

In the first few years at AHS, while there was a will to change, the project was slow to get off the ground. “It took us until around 2012 to start gaining momentum, but we were finally able to develop the Palliative & End-of-Life Care division at AHS, led by Max Jajszczok and Michelle Peterson Fraser at the time,” says Dr. Silvius. “Once we got everyone together, we set out to develop the Framework.”

Published in 2014, the Palliative & End of Life Care Alberta Provincial Framework contained 36 recommendations. Seven of those had either already been in development or began development immediately. These initial recommendations aimed to build capacity, improve community-based healthcare services and make PEOLC more accessible for Albertans – particularly those living in more remote areas of the province.

“We brought people from across the province together to brainstorm. There was a recognition that the rural zones were often very isolated and limited by the resources available to them,” recounts Dr. Silvius. “By bringing this group together, we wanted to advocate for the under-resourced areas of the province – and try to capture what a robust palliative care system for all of Alberta could look like.”

Planning for increasing hospice capacity required an integrated approach. This approach allows for flexibility and differences in local contexts and geography.

AHS mapped out three streams of PEOLC:

• Palliative home care
• Hospice / community supported PEOLC beds
• Acute care PEOLC designated beds

For example, in some areas the community’s needs did not justify the construction of a stand-alone hospice facility. There, AHS looked for opportunities to integrate designated supported end-of-life care beds in existing care facilities and co-locate hospice beds beside existing care facilities or to improve the community’s home care capacity. This way, communities were able to use resources they had available to them to build hospice capacity.

Through this innovative integrated approach to PEOLC capacity planning, Alberta now has 8.51 beds per 100,000 needs adjusted population as of March 2023. Thanks to the continued commitment of the Alberta Government, palliative home care and hospice care capacity continues to expand. An investment in over 25 new hospice beds and funding to support 500 net new palliative home care clients are both planned for by 2025 – 2026.

Developing Best Practice Standards for All Settings of Care

PEOLC within Alberta is provided in all settings of care inclusive of acute care, primary care, continuing care homes, and home and community care. Developing strong and reliable best practice standards was vital to help guide palliative care practitioners on how to manage care. This was especially true given the wide variety of locations, settings, levels of expertise, and access to resources found throughout Alberta.

A newly implemented provincial clinical information system gives practitioners easy access to these standardized assessment tools and guidelines. This system helps streamline practices throughout the province, improving efficiency and ultimately leading to better experiences for patients and families. “These guidelines were developed by experts from across the province,” notes Dr. Silvius. “By pooling our knowledge and experience together, we’ve been able to equitably develop and maintain quality standards that benefit everyone.”

When additional support is needed, beyond tools and guidelines, the knowledge and expertise of palliative care specialists is also available when professionals need it.

“Through the 24/7 physician on call program, a physician in North Zone for example, could call in and be connected with a specialized palliative physician, who could then advise them on how best to support their client,” says Dr. Silvius. “That’s how we tried to overcome some of the barriers in the beginning – a family doctor could function as a palliative physician because of the connection they’ve made with a palliative specialist elsewhere in the province.”

Measuring Progress

As of 2021, 21 of the 36 original recommendations outlined in the Framework have been completed. Some notable accomplishments include:

• A centralized provincial PEOLC website for patients, families, and healthcare professionals
• A province-wide 24/7 Palliative Care Physician On-Call support to physicians
• Provincially available Bereavement program inclusive of Bereavement Package, Directory and White Rose Program
• EMS Palliative and End-of-Life Care Assess, Treat and Refer Program
• Rural Palliative Care in-Home Funding Program
• Patients’ Death in the home care setting guideline
• Provincial Advance Care Planning policies and procedures

Communities Leading the Way

The collaboration and interconnectedness that the Framework embeds in PEOLC across Alberta is also reflected in the work that led to its creation and implementation. The AHS PEOLC team and the Provincial Palliative and End-of-Life Innovations Steering Committee could not have achieved this alone. Important contributors include patients and families, Indigenous Health, Alberta Health, The Covenant Health Palliative Institute, Alberta Hospice Palliative Care Association, Canadian Hospice Palliative Care Association and countless more. Together with the individual PEOLC zone operations and service providers, they have all been the engines pushing the province forward.

“From the very beginning, the people at the front line were involved in developing these programs – how else could we know what was needed?” says Dr. Silvius. “In order to create the change we wanted to create, we needed to trust in their community knowledge and expertise.”

Keeping an ear to the ground, equitable and considerate resource management, and smart funding allocation allowed AHS to grow their programs organically. The EMS PEOLC Assess, Treat and Refer (EMS PEOLC ATR) Program is a shining example of this type of program growth.

The EMS PEOLC ATR Program was developed to support palliative emergencies within home and community care settings across all five zones. Its province-wide implementation required the close collaboration of AHS, Alberta Health, and representatives from every zone.

“While we needed Zones to implement our programs, we also wanted communities to control how they prioritized programs, and what order they implemented them in,” says Dr. Silvius. “By allowing them the freedom to decide when to tackle what activities, everyone got what they wanted.”

This trusting, flexible approach shines throughout the story of the Framework. There was little mandating or micromanagement. Instead, relationships were built on trust, cooperation, and a genuine desire to contribute to the greater good.

The Momentum Continues

AHS’ progress on PEOLC, inclusive of hospice care, in Alberta is a testament to the dedication of individuals in Alberta health care like Dr. Silvius and his colleagues, and of PEOLC champions across the province. Their centralized approach built on a foundation of community collaboration and an understanding of Alberta’s unique diversity. This approach enabled them to effectively use the resources available to them. Patients and families now have more options. With each option, Albertans can receive the same high quality of care they expect for themselves or their loved ones.

In 2021, a refresh to the PEOLC Alberta Provincial Framework was suggested by the Palliative and End-of-Life Innovations Steering Committee and thus the PEOLC Framework Addendum was developed. The Addendum outlines what Alberta has achieved since the development of the framework in 2014, where Alberta is today (inclusive of a current state analysis), gaps, challenges, and recommendations for future work.

With commitments from the Alberta Government, AHS, and the guidance of the Palliative and End-of-Life Innovations Steering Committee, the forward momentum in Alberta is ongoing. The Palliative & End of Life Care Alberta Provincial Framework and Addendum have been and continue to be a blueprint for meaningful change in how PEOLC is provided and accessed across the province of Alberta.