End of life care

Our work in end of life care focuses on the specific desires that people have at the end of their lives about how they want their last days to unfold, and how those desires can best be fulfilled.

Our past work in this area
We have investigated organizational level best practices to support high quality spiritual care, a particularly difficult problem as healthcare has become more and more secular while patients still face spiritual and existential issues in their last days. We have also investigated the grief experiences of home health care providers who are involved in palliative care, and have developed approaches to address the providers’ needs.

Our current work
In our current work in end of life care, we are investigating, through our Reflection Room project, ways to help people move from death-avoiding to death-discussing, so that they are better prepared for their dying and death, and are in a better position to discuss with their families, friends and healthcare providers what their wishes are for their last months and days. In addition, we are starting to use human-centred design and technology to enable families and friends to communicate with and about their loved ones who are dying at a distance. We are also investigating how to satisfy the preferences and desires of people who are making use of technology-assisted palliative care.

Some project overviews

Co-design of Hospice Outreach by Digital Means
A group of 5 exciting and related projects emerged from a co-design process with a rural Ontario residential hospice that wanted to extend its reach into the community using digital technologies in a variety of ways. The co-design process continues within each of the 5 projects.

More information:
  • Project summary -- available here.
The Reflection RoomTM: Moving from Death-Denying to Death-Discussing
Thinking about dying and death is something we tend not to do, and those who promote Advance Care Planning for our last days, hours and minutes would like us to do more. How could we go from being a death-avoiding society to a death-discussing society?

More information:

Organizational-level best practices to support spiritual care
Best-practice end of life care incorporates spiritual care, but how can secular organizations support and deliver it? The results of this study provide nine ways.

More information
  • Project summary -- available here.
  • Publication -- available here.
  • Information and videos -- available here.
The grief experiences of frontline home care workers
Frontline home care workers working in palliative care experience the death of their clients often. How do these workers cope? Are they supported well enough?

More information
  • Project summary -- available here.
Experiences of Indigenous people at the end of life
This project was led by Dr. Wendy Duggleby at the University of Alberta School of Nursing. It resulted in a summary of the experiences of Indigenous people at the end of life as represented in qualitative academic research. It helps form a basis for future research.
  • Resulting journal article -- Duggleby W, Kuchera S, MacLeod R, Holyoke P, Scott T, Holtslander L, et al. Indigenous people's experiences at the end of life. Palliative and Supportive Care. 2015(June 15):1-13. Abstract available here.
Recent highlights

Holyoke P, Stephenson B. Organization-level principles and practices to support spiritual care at the end of life: a qualitative study. BMC Palliative Care 2017 16:24. Available here

Oikonen K. The Reflection Room: Creating space for reflection and shared storytelling. eHospice. 2016. (January 13, 2016). Available here.

Lejambe V, Holyoke P. Understanding the Grief Experiences of Home Health Care Workers. AVISO Newsletter (CHPCA). 2013;Spring 2013(71). 

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