Considering the ethics of producing podcast on 'vent farm' patient Date: 11/05/19
By Joanne Faryon
The first day I spent in room 20, the nursing home room I would visit over the next two years, I sent an email to a friend. I told him I felt like an “intruder” as I sat in the far corner, watching a man attached to breathing and feeding tubes lay in bed. I was there to better understand the man’s life, and ultimately learn more about him and the circumstances that put him in that bed. The man had been called Sixty-Six Garage for more than 15 years because no one knew his identity. This was the beginning of what would become the Los Angeles Times podcast, Room 20.
The podcast chronicles my search for Garage’s real name and the truth about the accident that caused his devastating brain injury. It also documents what his daily life is like, at times describing in detail the routine medical care required to keep him alive, including using a small vacuum to suction the excess mucous from his chest. It’s a disturbing sound and accounts for about a 30-second scene in the first episode.
The podcast has gotten a lot of positive press, but it’s been blasted too. Mostly for what critics see as an invasion of Garage’s privacy, and an overall “yuck” factor for including the audio of the suctioning that Garage endures at least six times a day.
Questioning the ethics of breaching Garage’s right to privacy is fair.
It’s a question I’ve thought deeply about, long before the podcast was released in July. It’s a question the nursing home had to consider before granting me permission to be in room 20, and a question I’m certain Garage’s sister also thought about before allowing me to tell her brother’s story.
For the record, before Garage’s identity was determined and his next of kin found, I had permission to be in Room 20 from the interdisciplinary team that cared for Garage – his doctor, social worker, and the director of the nursing home. This is made clear in episode 1. Once his (spoiler alert) sister was found, I then had her written permission to continue visiting her brother and reporting on him. But morally speaking, was I wrong to describe Garage’s life in such a public way?
I think back to that first day in Room 20, the day I felt like an intruder. I felt this way because I knew nothing about this man, not even his real name. We had no connection and no relationship. I had been told he was in a vegetative state, and so even attempting the polite “niceties” between two strangers seemed pointless, perhaps even absurd. But within days, being merely an “observer” became intolerable.
“Turns to me, showing me he is choking - wants help,” I wrote in my journal after witnessing another routine suctioning.
“Speaks with his eyes, clearly trying to say it hurts and wants help.”
It was these moments that disallowed me to remain an objective observer. My humanity won out, thank goodness, and I began holding Garage’s hand or counting to him in Spanish to try and comfort him whenever I was in the room while he was being suctioned.
I suppose one could also argue I overstepped my bounds as a reporter the minute I held his hand, but I don’t regret my choice.
In the podcast, I try to capture the horror of the painful procedures; the matter-of-fact way Garage must be turned and changed and fed through a tube; the slow monotony of his day; and his absolute isolation and loneliness. These are the facts of his life.
I suppose some might argue it’s better no one know this – that Garage should keep his privacy. But that also means it’s likely Garage’s true identity would never have been learned and his sister would still believe her brother was dead. It would also mean we would not have to confront the fact that Garage endures that painful suctioning procedure at least six times a day.
I believe that’s a little like not allowing journalists to capture the frontlines of war or the aftermath of a mass shooting or the human carnage left behind from a terrorist attack.
Garage was a teenager, hiding in the back of a pick-up truck, crossing into the U.S illegally because he believed his chance at a better life was waiting on the other side of the border. A border patrol vehicle chased the truck and it was broadsided by a car at an intersection in the California desert. Garage had no identification, no one to make a choice on his behalf, that is, to do everything medically possible or let him go. The system decided to keep him alive and now, more than 20 years after that accident, Garage continues to live in a hospital bed with one tube to help him breathe and another to feed him. So far, the state of California has spent more than $4 million on his care.
As uncomfortable and painful as it is to open the door to Room 20, it is a declaration that Garage exists. I believe it’s in the telling of his story, and the reaction to it, which has for the most part, been a show of empathy, that he is given his dignity and his humanity.
Joanne Faryon (@JoanneFaryon)is an award-winning journalist and producer specializing in investigative multi-media projects. She has reported in Canada and the U.S. for regional and national news programs.