Dying, Death and Grief
We are focused on the unique needs and desires of people at the end of their lives and how the health and social care system can support their journeys in a holistic, person- and family-centred way. The following are some of the specific topic areas we are actively exploring in this field:
- Spiritual care practices
- Public policy in end of life care
- Palliative approaches to care for structurally vulnerable populations
- Moving from death-denying to death-discussing
- Hospice outreach
- Grief and bereavement experiences
- Advance Care Planning
Why Dying, Death and Grief?
Most health services research in end-of-life care is focused on the development, delivery and evaluation of traditional medical services to the person who is dying, that are defined only according to clinical expertise and needs. While improving medical care at the end-of-life is important, we see the need to expand knowledge on a more holistic view, and to include a consideration of the needs and desires of caregivers, care providers, and society as a whole. By exploring the dying, death and grief experiences of Canadians we are evoking conversations about people's desires and needs at the end of their lives and finding solutions for how the health and social care system can offer better support.
How did we get here?
Our journey of research in spiritual care and reflection has been foundational to the priority research field of Aging in Society.
As the population ages, the need for hospice palliative care is steadily growing in Canada. The SE Foundation has committed $4 million in investments to expand access to residential hospice and community based services, spiritual care and education. As part of this larger effort by SE Health to improve end-of-life care services, SE Research Centre is working to expand and apply knowledge to make impact in this field.
In 2014, we set out to find organizational-level practices that could be adopted in secular settings to support frontline providers in delivering spiritual care in the context of end-of-life care. Nine principles for organization support for spiritual care emerged from meetings with hospice programs across North America with spiritual foundations. One key finding was that people tend not to talk about their end-of-life wishes before they reach the end of their lives.
In 2015, building on the above spiritual care work, we wanted to create an immersive experience and space for reflection on dying and death. The Reflection Room leverages the power of storytelling, shared experiences, and human-centred design to engage people in thinking and talking about end of life. The Reflection Room started as a short term physical space at the 2015 Canadian Hospice Palliative Care Conference, and after an overwhelming response, it evolved into a travelling art installation and research project that we have taken to both public spaces and health care settings in over 20 cities across 6 provinces in Canada. To date we have created over 30 Reflection Rooms and collected 600 stores. We also have an online version of the reflection room at reflectionroom.ca
What are we currently working on?
Co-designing curriculum on palliative care for providers of services to structurally vulnerable people
Workers who provide care to people who are homeless have an understanding of their day-to-day life. As many people who are homeless face death, we are teaming up with workers to co-develop learning tools focused on a "palliative approach to care" to support their interactions with people who are homeless. A "palliative approach to care" provides ongoing care for people suffering from chronic and life-limiting illnesses. Preliminary findings from the first phase of the project indicate that existing palliative care/harm reduction curriculum content is mostly clinician focused with an assumption that care is being delivery in a hospital, hospice or private home. New curriculum must be developed to respond to the information-sharing, communication and learning needs of social care workers. The full results of this research are expected to be available here in May of 2018.
The Reflection Room Phase 2: Continuing the conversation about dying, death and grief
We want to continue to support people in having conversations about dying, death and grief through the Reflection Room. Building on the findings from the 600 stories collected in phase 1 and feedback from our partners and visitors to the Room to date, phase 2 of this research will explore month-long art gallery-style inspired versions of The Reflection Room. We will be hosting up to 10 Reflection Rooms across Canada in 2018. Interested organizations should apply to host The Reflection Room here. Preliminary findings will be available here in June of 2018. The full results of this research are expected to be available here in March 2019.
Taking action on spiritual care at the end of life in hospital, hospice and home care settings
As the next step in our work on spiritual care, we wanted to identify barriers, opportunities and key processes for implementing the Nine Principles for organizational support for spiritual care. A framework for implementing spiritual care principles at the organizational, practice and individual levels emerged with three themes: 1) Place: elements that enable a sacred space (physical & mental) in any setting for any person; 2) People: involvement and practice that will support a holistic approach to spiritual care; and 3) Time: spiritual care requires an investment of time that is often in contrast to systemic pressures of the healthcare system. The full results of this research are expected to be available here in June 2018.