A report of our mapping exercise with other researchers from Scripps Gerontology Center to define the boundaries of Palliative Care and End of Life Choices.
In 2016, a small group of researchers associated with Scripps Gerontology Center at Miami University noticed a common interest that kept coming up in regular meetings—the present state and future of palliative care. This led to the formation of a Palliative Care/End of Life Choices Research Interest Group associated with Scripps, where Gerontologists, Sociologists, Designers, Economists, and experts from other backgrounds share their research and thinking in this area. Group meetings have sparked some enlightening conversations and opportunities for research, but they have also highlighted the complex nature of palliative care—most notably, the question:
What are the boundaries of palliative care?
On October 12 and 19, 2017, members of the Palliative Care/End of Life Choices Research Interest Group got together in the xdMFA Design Studio at Miami University in Oxford, Ohio for concept mapping exercises designed to get some answers. Both Jennifer Heston and Dennis Cheatham, members of the Living Values research project are associated with Scripps and led the collaborative exercise. While our Research Interest Group had no expectation that we could exhaustively cover every corner of palliative care, we felt that working together, we could map many aspects that could inform research collaborations, initiatives, as well as a literature review. During the October 12 session, our group generated as many aspects of palliative care as possible in a one hour using a fluid process of concept development. In the October 19 session, things started to take shape as these aspects were arranged as a concept map.
Aspects and Boundaries Come in All Shapes and (Invisible) Sizes
During the October 19 session, our process for generating and categorizing aspects of palliative care was driven by three discrete qualities of palliative care aspects: formal, experiential, and systems. These classifications were broad enough to spark conversation between about ten participants.
Tangible, real items and people are involved in palliative care. Even the smallest items can have profound impacts on people involved in palliative care. Formal aspects included anything that could be touched, observed, or tangibly manipulated, regardless of size. Aspects that were generated included DNRs, (Do-Not-Resuscitate Order), doctors, breathing machines, pets, heirlooms, donated organs, and hospitals.
Palliative care involves people, services, and interactions, so many aspects are experienced. The group generated experiential aspects like hugs, empathy, status, prayer, fear, holding hands, and preference. While these may not be tangible, they are very real factors that impact choices at large and small scales.
Based on the experiences of members of the Research Intrest Group, palliative care and end of life choices don’t take place in a vacuum—they are interconnected. In fact, the issue often involves systems being connected to other systems. Systems-related aspects were generated during the group’s process including the legal system, familial support, Hospice, spirituality, and education.
Our group is reconvening in December to discuss the concept map and how it can fuel next steps. Based on the discussion that has followed, it’s folly to even think palliative care has “boundaries.” However, cogent themes have started to emerge from the activity and researchers are beginning to define projects our work will fuel. Our Living Values team is excited to be part of work that has no boundaries.
Here are a few images from the October 19 activity.