'Confidential' crisis hotlines are selling your call records to third parties
988Deathline?
Over the past two years, since the National Suicide Prevention Lifeline (NSPL) became 988Lifeline and absorbed hundreds of private crisis hotlines around the country, around a million people have had the police called out on them after call attendants determined that they were at imminent risk of suicide. Many of these people have attested that at no point were they actively suicidal; that the last thing they wanted was to be taken by force to a psychiatric hospital; and that the experience was traumatizing and left them with feelings of betrayal and inability to trust.
Studies have shown that emergency psychiatric hospitalization, far from preventing suicide, may greatly increase the chances that a person will take their own life. Reports from those threatened and coerced into "voluntarily" admitting themselves give a good idea of why vulnerable people may become suicidal after their experience of being locked up, stripped, drugged, and bullied into compliance.
After days or weeks, these people are then discharged without any future plan for their support, all the more appalling given that they were ostensibly incarcerated to prevent them from taking their own lives.
We'll save your life and promise you a bright new future as a guinea pig
988Lifeline may not routinely follow up on callers’ welfare, but that doesn’t mean that their records are lost. In fact, all the hundreds of 988 call centers store both the recordings and the transcripts of calls received. Why? Because of their value.
Vibrant Emotional Health (Vibrant), which runs 988, presents Lifeline as “a leader in … mental health crisis care [offering] confidential” conversations. Of course there are caveats. “Confidential” ceases being so whenever a call attendant determines “imminent risk,” as the Gold Report described in a previous article. But Vibrant is also careful to note in its Terms of Service, in capital letters no less, that talking to a 988 counselor “DOES NOT CONSTITUTE … [EITHER] MENTAL HEALTH CARE … [OR] CONFIDENTIAL” communication. This enables them to evade HIPAA confidentiality requirements. In fact, there are no clear federal protections for callers regarding the recordings or transcripts held by the hotline.
According to SAMHSA, the Substance Abuse and Mental Health Services Administration, an agency within the U.S. Department of Health and Human Services that helps coordinate the 988 Suicide & Crisis Lifeline, they only record calls for the purposes of “quality assurance” and “training.” Vibrant states that, “Any information provided by you or collected about you will not be shared or disclosed with any third party.” However, their website simultaneously states that they offer access to the recordings to third parties “for research purposes.” Not only that, “researchers” are often offered the option of listening in to calls as they occur.
And guess what? The government is in on it too
In 2022, Crisis Text Line (CTL) was the subject of public outrage when it became known that their for-profit branch, Loris, received millions of call transcripts from CTL. Following the expose, they stopped passing data to Loris, but they continue to pass data to third parties.
In 2023, the National Institute of Mental Health (NIMH) gave $2.1 million to two for-profit companies that run several 988-affiliated call centers, to be used to develop AI tools for “behavioral health.” The companies claim that they only use 988 recordings to make software to “evaluate the quality of crisis counselling.”
Jason Kelly of Electronic Frontier Foundation condemns the practice.
If I’m a caller of a helpline, I don’t expect data from the call to be used to create an AI product. These [uses] are just totally off bounds, or should be, and should be very clear in any policy that an organization would have.
Your call recording? No, it's ours
As if to highlight that 988 has become something of a business (that is, focused on making money rather than saving lives), call data that is sold to third parties is inaccessible to those who might have the best claim to owning it - namely, those who made the calls in the first place.
Emily Wu Truong was out walking at night when feelings about the loss of her father began to overwhelm her. She called 988Lifeline because it was late and she didn't want to disturb a friend or relative.
I wanted to be anonymous while processing my emotions. I’m very public about my emotions and expressions. So [the 988 call attendant and first responders] were probably overwhelmed and at a loss. They didn’t know how to handle my over-expression. I was crying a lot, too.
Emily was still on the phone with 988, out on the street, when paramedics appeared. At no point had she been asked for or mentioned her location. She was taken to an emergency room, forced to put on hospital garb, monitored constantly even while using the bathroom, and then locked in a room, alone.
A few hours later she was strapped to a gurney and transferred to a psychiatric hospital where, although she had been admitted because the 988 call attendant claimed she was suicidal, the only support she was offered was drugs.
After two days, she was released with a $4,500 hospital bill.
Traumatized and furious, Emily tried to get hold of the recording of her call to 988 to bolster her complaints against the service. She was told she would first have to get a court order before Vibrant would release it.
Toward a new model of 'helping' people - based on drugs
How did a network of crisis call centers become a data bank for AI and a resource for unnamed third parties (including Meta, since many 988 call centers have a Meta Pixel installed on their websites)? According to Alan Ross, director of Samaritans NYC, the only branch of Samaritans that doesn’t seek caller information from 911, things started to change around 20 years ago when SAMHSA and Vibrant started to push NSPL toward call-tracing and hospitalization — around the same time that psychiatry in general moved decisively toward drug-based treatment for “mental illness.”
Later on, after the NSPL was established and tax funding was built into the system, private call centers were encouraged to join. All Samaritans branches other than Ross’ did join up. Ron White of Boston Samaritans explained the consequences:
[Around 2012,] the NSPL finally, kind of, if you will, drew a line in the sand that said, “If you want to be a member of this network, you need to adopt our intervention policies.”
Ross still insists that there’s a place for hotlines with absolute confidentiality, despite what some people paint as the dangers.
You need diverse forms of access to reach the majority of people. And the greatest gap is confidentiality. People are hesitant to seek help, because they’re scared. They don’t want people to know their business, or they’re ashamed. I can come up with one hundred reasons why you wouldn’t want to take a chance of someone being able to identify you.
Alternatives: Talk to someone who's been through it himself
There are few options left open to those who don’t want to risk a forcible hospitalization. One option available is the Western Mass Recovery Learning Community (RLC) which was established by Sera Davidow. The RLC is a peer-run hotline, meaning that it is staffed by people with lived experiences of emotional trauma rather than people who have undergone some sort of “professional” training. They never trace calls.
Davidow explains,
In my experience, all that they accomplish [through tracing calls and forcibly hospitalizing people] is to continue to send this message that whatever you’re struggling with, the things that have happened to you, are so dark and so terrible that nobody can handle hearing about them.
The RLC’s approach, called “Alternatives to Suicide,” she continues, is based on breaking the taboo of talking about suicide.
Is the [best] path where everyone is so terrified to talk about suicide because of consequences, like having the cops called on you even by confidential hotlines? Or is it the path where we know that we’re going to lose people, and we create as much space as we possibly can to be with people in darkness and talk openly about this and support people?
At the end of the day, why not simply ask truly suicidal people what they want, what will help them to continue living?
Paula J. Caplan PhD cites one study of suicide attempt survivors who told researchers exactly what they wanted:
Reducing stigma of suicidality, expressing empathy, active listening, range of treatment options including non-medication treatments, addressing root problems, bolstering coping skills, trauma-informed care.
In other words, not what patients generally report receiving through a forced psychiatric hospitalization.
The information contained in this article is for educational and information purposes only and is not intended as health, medical, financial or legal advice. Always consult a physician, lawyer or other qualified professional regarding any questions you may have about a medical condition, health objectives, or legal issues. If you are struggling with suicidal thoughts, you can call a qualified free mental health helpline or seek help from a qualified therapist.
