Arashi Young is a writer, visual artist and cultural studies geek. She enjoys research, societal dissection, collaborative art projects and struggling with barre chords on the guitar. This blog post is part of a series of posts by Arashi about end-of-life care planning and documentation.
Both of my parents had careers that brought them close to the larger issues of life and death. My mother spent her entire career as a nurse, specializing in the treatment of cancer. My father was a police officer who worked his way up to become a homicide detective. Through these two careers, they both experienced the extreme fragility of life.
My mother, in particular, would tell me stories of many nights where she held a patient’s hand as the person died. She’d half-jokingly refer to herself as a servant on the River Styx, the river in Greek mythology that formed the boundary between Earth and the underworld.
There was one incident that left a deep impression on her. She was working a late night in the cancer ward taking care of a woman who was losing her battle. She had been fighting for months. Her family was almost constantly at her bedside, urging her to be strong, to pull through. My mother could see the patient herself was clearly exhausted, but her family wouldn’t give up the fight.
Late one evening, the patient’s husband left her bedside briefly to take a break and get a cup of coffee. She recalled nearly the second he was out of earshot from the room, his wife chose to die. She’d signed an advance directive which specified she wasn’t to be resuscitated and these wishes were respected by the nursing staff. The husband came back to the room and attempted to revive her himself, but in the end, her choice was made.
Experiences like these made it clear how important it was to have an advance directive and to have your end-of-life decisions understood clearly by your loved ones. My mother organized a family gathering where we all filled out our advance directives together. Instead of it being a scary conversation we all had privately, it was a deeply bonding day where we got to understand what each of us wanted.
Completing an advance directive requires asking yourself if you’d like to have a feeding tube or other life support technologies exercised in the course of your care. Would you want these technologies if it would only postpone death? Would you want these technologies if you were permanently unconscious? Would you want these technologies if you were going through an advanced progressive illness?
None of these are easy questions. In answering these questions, my family and I spent the day debating what life meant. Was it defined by the taking in of breath and nutrients? Was it defined by consciousness? At what point did we want to prolong and at what point did we want to preserve resources for other people? We found our answers would change with the context of the question—if there was a hypothetical hope of recovery. None of these decisions were clear cut and it took a lot of soul searching to put answers down.
I was thankful for the opportunity to talk about these issues with my family. For anyone else, it might have seemed odd, but for our family, it was an important conversation to have about the meaning of life and death.