For much of their lives together, Stephanie Rinka and her husband, John, had ongoing conversations about end-of-life issues. Stephanie was a nurse, and she cared for many people suffering from incurable illnesses and debilitating traumas.
Stephanie treated her patients with great care and dignity. Privately, though, she told John she wouldn’t want to be kept alive if her quality of life was gone. For Stephanie, quality of life was defined by action. She was always on the move. She liked to snorkel and hike and wander beaches. She was restless and energetic. The idea of being inside a body that didn’t function terrified her.
This is the story of the Rinka family and what happened when tragedy befell them. It’s a story that explores how the choices we prefer when we’re healthy may no longer make sense to us when we’re actually confronting death.
What my research participant made clear to me that day is that the lack of robust and accessible social programs for long-term care is merely a...