The Spiritual Dimensions of End of Life Care
Collaborative, interdisciplinary research on the spiritual dimensions of end of life care, in partnership with Dr. Paul Holyoke, Director of Research, Saint Elizabeth Health Care.
In caring for people with terminal illness, needs, concerns, and questions of a religious, spiritual, or existential nature are usually present. Spiritual care, broadly conceived, is necessary for the person who is dying, but also for family members and caregivers. There is widespread recognition in end of life research and in models of hospice palliative care that spiritual care is, or ought to be, a central part of the overall care being provided.
In spite of recognizing its importance, modern hospice palliative care has struggled to provide spiritual care at end of life. The medical model has been the dominant paradigm in health care for over a century. Historically, conceptual and institutional developments in modern medicine have been premised on the exclusion of religious (or spiritual) attitudes, ideas, and practices. During the same period, health care, including palliative care, has become almost exclusively the provenance of the modern, western state, which, like modern medicine, defined itself in part by excluding religion and spirituality from its business. The fact that both the medical model and the organization and delivery of health care have distanced themselves from religion has led to a situation where, at the practical level, it is recognized that spiritual care is required, but at the organizational, managerial, and cultural level, there are few supports for delivering such care.
This disjunction between acknowledged need for spiritual care and on-the-ground organization and practice generated the central question driving this study: How can hospice palliative care – which recognizes the importance of spiritual care at the end of life and beyond, yet which is chiefly framed and informed by secular ideas, contexts, and practices – better meet the religious, spiritual, and existential questions and needs often present at end of life?
Since, practically speaking, most hospice palliative care in the foreseeable future will continue to be organized and practiced chiefly within or connected to the secular contexts of publicly-funded healthcare, there is a need to find ways to incorporate religion and spirituality into the organization and delivery of care offered in secular settings. This will help to meet the needs of people who are dying, their family members, and, often, their care providers, and to live up to the intentions informing statements of best practices in hospice palliative care, which typically make mention of the importance of religion and spirituality at end of life.
The Reflection Room: 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 might we transition from being a death-avoiding society to a death-discussing society?
Human beings are storytellers. Understanding complex challenges through narrative builds empathy. Stories also trigger the imagination for future possibilities. We think that providing places for storytelling and engaging with the stories of others will stimulate more and better thinking about the kinds and quality of care at end of life.
In this research, our team is creating “Reflection Rooms” – both short-term physical spaces across the country and an online website – where people are invited to write their stories about dying and death, as well as read the stories of others. We will see what people write, gage participant interests and willingness to talk about death, and follow-up to discover the effects of the Reflection Room experience in people’s lives.
As as May, 2017, more than 25 installations have been completed at various locations across Canada.
Spirituality in End of Life Care
A collaborative research project examining the spiritual dimensions of end of life care and how spiritual care can be organized and supported in secular-oriented healthcare organizations. The project was awarded a $25,000 developmental grant by Saint Elizabeth’s Research Centre.
One possible way to enhance the provision of spiritual care at end of life is to focus on the contributions of individual care providers or specialist spiritual care providers. However, experience shows that without organization-wide support for individual care providers’ efforts, depending solely on the motivation and abilities of individual providers leads to mixed results.
Another way to reflect on reorienting hospice palliative care in chiefly secular settings is to explore whether valuable lessons may be learned from the organization and delivery of care practiced at hospices that have an explicit religious orientation, committed as they are to the spiritual dimensions of end of life care. This is the approach taken in this study, with a focus on organizational level practices and approaches that could support and complement the efforts of individual care providers. An assumption guiding this research project is that there is a set of useful, generalizable ideas and practices taking place at hospices contextualized with specific religious traditions, and these ideas and practices might be transferred or translated to more or less secular hospice palliative care settings.
Research Article Published
A substantial article on the spiritual dimensions of end of life care has been published in the journal BMC Palliative Care. The journal is open access, and publishes original peer-reviewed research in all aspects of hospice and palliative care for the dying and for those with profound suffering related to chronic illness. The article was co-authored by Dr. Barry Stephenson (Memorial University, Department of Religious Studies) and Dr. Paul Holyoke (Director of Research, St. Elizabeth Health Care). The project involved visits to four hospice organizations in North America, representing Buddhist, Catholic, Jewish, and Salvation Army faith traditions, generating 46 interviews with caregivers, hospice administrators, volunteers, and bereaved family members. Nine Principles for organizational support for spiritual care emerged from the interviews. Three Principles identify where and how spiritual care fits with the other aspects of palliative care; three Principles guide the organizational approach to spiritual care, including considerations of assessment and of sacred places; and three Principles support the spiritual practice of care providers within the organizations. Interviewees provided organizational practices that illustrate each of the principles. These Principles, and the practices underlying them, could increase the quality of spiritual care offered by secular health care organizations at the end of life. The authors are presently completing editing on a series of videos that support and illustrate each of the nine principles.
Link to the article: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-017-0197-9
Papers and Presentations by Team Members
Oikonen, K., Holyoke, P. (2016, November) The Reflection Room: Shifting from death-avoiding to death-discussing. Oral presentation at the Central West Palliative Care Network Conference, Brampton, ON.
Holyoke, P., Stephenson, B. (2016, October). “Organizational best practices in the delivery of spiritual care at the end of life.” Paper presentation at the International Congress on Palliative Care, Montréal, QC.
Oikonen, K., Holyoke, P., Rizzi, K., Stephenson, B., Sethi. P. (2016, October) The Reflection Room: Shifting from death-avoiding to death-discussing. Paper presentation at the Relating Systems Thinking and Design (RSD5) Symposium, Toronto, ON.
Holyoke, P. & Oikonen, K. (2016, April). “The Reflection Room: Adopting storytelling to create space for reflection.” Paper presentation at HPCO Conference.
Holyoke, P., Barnes, P. (2016, April). “The Role of Spiritual Care Professionals in Promoting and Nurturing Organizational-level Practices Supporting Spiritual Care Delivery.” Workshop at the Canadian Association for Spiritual Care Conference, Vancouver, BC.
Holyoke, P. (2015, October). “Organizational best practices in the delivery of spiritual care at the end of life.” Oral presentation at the Canadian Hospice Palliative Care Association conference, Ottawa, AB.
Holyoke, P. (2015, October). “Organizational best practices in the delivery of spiritual care at the end of life.” Oral presentation at the Canadian Association on Gerontology conference, Calgary, AB.
Holyoke, P., Stephenson, B. (2015, October). “Organizational best practices in the delivery of spiritual care at the end of life.” Oral presentation at the Personal Support Network of Ontario conference, Markham, ON.
Holyoke, P. (2015, May). “Organizational best practices in the delivery of spiritual care at the end of life.” Oral presentation at the Hospice Palliative Care Ontario conference, Markham, ON.
Stephenson, B. & Holyoke, P. (2015, April). “Promising Practices in the Delivery of Spiritual Care in Hospice/Palliative Care.” Paper presentation at Hospice Palliative Care Ontario (HPCO) Annual Conference, Toronto, ON.