66 Garage: Reporter talks about finding a patients' identity, humanity Date: 11/05/19
By Cheryl Clark
Award-wining journalist Joanne Faryon has been writing a series of stories and produced a six-part podcast on her two-year pursuit of the identity of 66 Garage, a man kept on life support for nearly two decades and whose consciousness was questionable.
She found him in a San Diego skilled nursing facility, or “vent farm.” So moved by the anonymity of his plight, she vowed to learn his name, find out how he got there and contact his relatives who, as it turned out, thought he had died long ago.
“What if no one knew who you were and you had lost the ability to tell them?” she asks.
She quit her job and spent the next two years, her own money – and, at times, as many as 30 hours a week in a nursing home interacting with Garage – on this journey.
Faryon and I both worked for inewsource.org, a nonprofit news organization affiliated with KPBS-San Diego, and I interviewed her at length for this Q&A.
This is such a powerful story and so skillfully and passionately told as a podcast, I could do nothing else while I listened to it.
Q: Joanne, congratulations for a wonderful podcast and series. How did you get started on this journey that led you to a man called 66 Garage and Room 20? It started with your stories years ago on death and dying, right?
Faryon: One story does lead to another and another. I was working for KPBS and then inewsource on death and dying and hospice. (Joanne covered the story of San Diego Hospice, accused of billing Medicare for care of clients who weren’t actually dying).
Two cancer doctors actually said to me that hospice “is better than sending people to a vent farm.” I asked, “What the heck is a vent farm?” They said they’re places where people are kept alive on machines. It took me an entire year to find time to figure out if they exist, and several months to learn that these were subacute units, and more time to gain access. And once I did, I reported on them for eight or nine months.
That’s where I learned about 66 Garage, who had been there for 15 years and no one seemed to know his real name or where he came from.
Q: You found out there were so many people like Garage housed in these facilities, right?
Faryon: That was the data component, and it was a huge negotiation to get that data on subacute facilities from the California Department of Health Care Services. What it revealed is that there were thousands, in fact 4,000 people in the state of California alone housed in these facilities and the trend had doubled between 2004 and 2014.
Q: And the people in these units, are they conscious or like Garage?
Faryon: That data is not available. But what I can say is that in one of the largest units, which was Sharp Villa Coronado (a skilled nursing facility in San Diego with about 70 subacute beds), where Garage was, the vast majority had some disorder of consciousness. They were either in a vegetative state or minimally conscious. They end up on these units because for the most part they have traumatic brain injury and need to be on feeding and breathing tubes. There’s no data to tell you how many of those housed in these facilities are like this.
Q: So you met Garage but didn’t know much about his past or how he got this way. Most reporters would say fine. I’ve done enough. But not you. You quit your job and spent your own money for two years to dig into this. What was nagging at you?
Faryon: Right, who quits their job and why would I do this? I honestly didn’t think it would go on for two years and become such a big part of my life. But I decided I’m going to figure this out and tell his story. And then it became something bigger, an obsession. It had to do in part with my own mother’s death and some unresolved issues there. But I think part of it was just where I was in my life at the time. There was something really gratifying to be free from a newsroom and not have someone tell you 'you can’t do this anymore,' or 'time to come back from the field,' or 'this is your deadline.' I said no. I’m just going to report the hell out of it until I’m done, and until I say I’m done.
Q: What was the outrage you felt? Was it a sense of wrongdoing, millions of taxpayer dollars spent, or that the Border Patrol may have caused this, although you may not have known that starting out.
Faryon: My sense of outrage actually came once I spent time in his room. Oh my God, this poor man has been living this way for so long, and I don’t think he’s in a vegetative state; he has some level of consciousness. How horrifying that he’s been living this way for so long. It was also empathy and that’s what probably drove me. Yes, there was this issue of accountability, who’s responsible for this. He’s in an accident and the system doesn’t care enough to find out who he is. I knew I had to find out and ask all those questions. The new thing was being driven by the fact that I now had some connection to this person I was reporting on.
Q: So it wasn’t that there are all these people in these vent farms?
Faryon: That was the shock and awe of the first investigative project about vent farms. That oh my God there’s 4,000 of them, not just one Terry Schiavo. But at the end of the day, what drove me was the question, what makes us human. What defines personhood? Consciousness? Can we diagnose it, what does it mean and how horrifying if we get it wrong so often. Part of my reporting was that doctors misdiagnose consciousness about 40% of the time.
Q: What were the major obstacles?
Faryon: The first was getting access to the skilled nursing facility where Garage was being kept alive. It was pure persistence, absolutely not taking no for an answer. I didn’t stop asking, for months and months and months. But I formed relationships with Sharp Healthcare on past health stories and they trusted my in-depth reporting and knew it wouldn’t be sensationalistic and I would spend enough time not just reporting but also in the telling of the story.
Q: Didn’t you say at one point that they thought it would be good publicity?
Faryon: Actually, no. I was shocked they took a risk and let me in. I think they were terrified because it could have gone wrong for them. I never thought for a moment that they thought it would be good publicity.
Q: Maybe they thought it was a story that needed to be told?
Faryon: To air Garage’s story on the podcast, it was the head of the nursing home, Ed Kirkpatrick who got everyone to sign on because he felt it was important to know who Garage was and how he ended up there, and expose the circumstances of his life. I think it was Ed’s sense of compassion and sense of outrage and guilt, not knowing who this guy was.
Other obstacles though involved trying to research a person with no name in an accident 120 miles away in the next county, just north of the Mexicali border, that occurred in 1999 and I had no date and the accident report had been destroyed. I am shocked myself that I could even figure it out. I don’t know what I was thinking.
People in the area who may have remembered the accident refused to talk to me, and there was pushback from several officials. I remember a woman who worked for the ambulance company that first responded to Garage’s accident, asked me “why are you so interested in one unidentified illegal; there are so many?” In Imperial County, that came up a lot.
But there were a lot of people who, once they listened to the story about Garage, went to great lengths to try to help, even my son’s Spanish teacher and the administrator of El Centro Hospital. Strangers heard the story and asked how they could help.
Q: Were you ever ready to just give up?
Faryon: Of course. Actually, it was the worst two years of my life, especially after I’d been at it for so long. I’m unemployed, going through a divorce. I have hundreds of hours of tape and I don’t even know if I have a story. I tried to sell the story and a lot of people were not interested. Yeah, it was horrible. That’s when I went to Susan (Susan White, editor in three Pulitzer-winning projects) and asked if she would be my editor. I had no money to pay her but she said yes. She kept my spirits up, and said it’s a good, important story. We need to find the right place for it. If not for Susan, I might have given up on the story.
I had met with Jeff Light, publisher and editor of the San Diego Union-Tribune, who liked the story and suggested it to the Los Angeles Times. He said something like “this is the most amazing story I’ve ever heard.”
Q: You mentioned some negative reaction.
Faryon: One reviewer asked, how could I do a story about a man who was not able to give consent. And that’s a fair question, especially with HIPAA. (The Health Insurance Portability and Accountability Act that precludes health providers from revealing protected health information without a patient’s consent.) But should we just give this unknown man his privacy, though he’d been alone for nearly two decades with no human connection? When you think about it that way, it’s absurd. By detailing his life and the horror, it gives him humanity and restores his dignity, that he matters. This is who he is. He represents undocumented immigrants who have disappeared and their families don’t know where they are, and he represents these populations in nursing homes who live for decades with no voice. [In this piece, Faryon goes into more detail about the ethical considerations of her reporting.]
Q: Did you have any tricks to get health providers to talk with you? They’re not bureaucrats and don’t have to talk with a journalist.
Faryon: It’s a hard dance, not wanting to be so pushy that you turn everyone off, and no one wants to talk with you, to being pushy enough that you just have to insert yourself. Maybe you’re willing to stay into the evening until this person has 15 minutes at the end of the day. I had the luxury, and didn’t have a newsroom to report back to. You have to truly believe you’re giving someone an opportunity. You have to believe that in your gut, otherwise you will constantly feel like you are bothering someone.
Q: One of the most intriguing parts of all of this is that you did it in first person.
Faryon: I can’t recall ever writing in first person. But as Susan said, the minute I told people, I quit my job and I’m going to do this, they’d say this woman is crazy. So I had to disclose my own history with my mother’s death and explain to you why I would stay in a place like this for so long and report on death and dying. The listener has to know this because I changed the action. I was a character in the story.
There was a lot of conflict over that, a struggle and an uncomfortable position. But it was unavoidable. I don’t know that I want to do it again anytime soon.
Q: Any tips for a journalist who wants to try something like this?
Faryon: Get what you want or need right away before someone you think might shut you down can do that. Don’t do things by phone no matter how far away. Show up. Show up. Show up. At someone’s door. I went to the California Highway Patrol office over the course of this eight times.
Q: So I know you explain this so eloquently in the story and podcast. But why was he called 66 Garage?
Faryon: At first, we thought it was the name of the garage where his car was towed, it was the name he was given in the trauma unit, because there are so many Jane Doe’s and John Does.
So they created names that are supposed to sound not like human names. On that day, they used a dictionary, and the theme that day was names having to do with vehicles. Another man mentioned in the accident report, and who died was called something like Trailer Park. One day it might be plants, so someone might be named 54 Fern.
Q: What’s next? I heard something about a movie
Faryon: Maybe. Now I’m working on another story. I want to explore this issue of consciousness from a science and medicine perspective.
If you have a traumatic brain injury or if you’re in a vegetative or minimally conscious state, and we decide to keep you alive, what therapies are available to you?
What can science and medicine do for you? I want to explore those questions.
Q: Here’s the money question: In your opinion, is Garage conscious?
Faryon: The neuroscientist says he’s minimally conscious, meaning he’s in and out of consciousness. My gut says that interaction with him, actually engaging with him, makes him become more aware. I think he’s like an infant – responding to sounds and lights and music.
Q: Any last words for AHCJ members?
Faryon: Be aware of the feeling you’ll get when you work on a long project. You start asking yourself, 'Did this really matter? Is it really a story? Will anybody care? What was I thinking?' Get through that and just keep going. Get over it. Get over it and tell your story.
Faryon now teaches journalism full time at Columbia University School of Journalism in New York. She is working on two podcasts, one with Turner Classic Movies about the life of Peter Bogdanovich and another about consciousness. She finally did learn Garage’s real name. It’s Ignacio. Faryon can be reached here.