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Health
Greg Hassall

Lindy has a terminal illness. Psilocybin, the compound found in 'magic mushrooms', is helping her face death

Lindy Bok is one of 35 participants in Australia's first psychedelic-assisted therapy trial. (Australian Story: Julie Ramsden)

Just over an hour after swallowing a plain white capsule, Lindy Bok pulls off her eyeshade and sits up in bed. "Excuse my French, but f*** me," she exclaims to the two therapists sitting either side of her in the darkened room. "It's so intense."

The capsule contained 25 milligrams of synthetic psilocybin, the compound naturally found in "magic mushrooms". Lindy is one of 35 participants in Australia's first psychedelic-assisted therapy trial, which is winding up at St Vincent's Hospital in Melbourne after three and a half years. It was initiated to investigate how psilocybin, combined with psychotherapy, might alleviate the anguish often experienced by the terminally ill.

Australian Story was given permission by St Vincent's to follow Lindy as she went through the trial.

"There's no handbook on how to navigate dying," Marg Ross, the psychologist who initiated the study, explains.

"When you're dying, you are losing everyone at once. And that is terrifying. Sometimes that fear is so paralysing that they just can't enjoy or be present in the time that they have left and they can really retreat or just feel gripped by this anxiety."

Lindy was diagnosed with metastatic breast cancer six years ago.

"I got lost for a long time," she says. "I was giving over who I was to the illness. Rather than focusing on the living, I was getting overwhelmed by the side effects of the dying.

"I needed something different and this has been the perfect fit for me."

The capsule contains 25mg of psilocybin — "a whacking dose". (Australian Story)
Lindy Bok prepares for her therapy at Melbourne's St Vincent's Hospital. (Australian Story)

When Lindy received her diagnosis in 2017, she was living in South Korea with her husband and their two adopted children, Min and Na Rae. They were giving the then-teenagers a chance to experience the country of their birth.

She had no symptoms so it was an enormous shock. At the time, she was given between six months and two years to live, so she has far surpassed those expectations.

In recent years, however, her situation has become increasingly difficult. Frequent bouts of chemotherapy have taken their toll physically, and, when her husband developed early-onset Alzheimer's, she became his full-time carer. Her children are now aged 21 and 19.

"I don't actually fear the physical part of the dying," she says. "I fear my kids not having a parent. That makes me profoundly sad that these magnificent kids aren't going to have their mum around, and they'll physically have their dad around but not in a sense of having a dad."

Lindy, 59, heard about the St Vincent's trial through a breast cancer support group. She was intrigued by the idea of trying something so different.

Min and Na Rae Bok share a laugh with their mother Lindy. (Australian Story: Simon Winter)

'Why are you giving mushrooms to people who are dying?'

There has been an explosion of interest in the therapeutic effects of psychedelics in recent years, but, for decades, psychedelic research was frowned upon by medical professionals and academics. Promising work had taken place in the 1950s and 60s, but when psychedelics became associated with the counterculture, they were swept up in then-US president Richard Nixon's so-called War on Drugs.

By the early 1970s, psychedelic research had been largely abandoned, and it wasn't until the mid-1990s that researchers in the US began to look again at potential therapeutic uses for drugs such as LSD, psilocybin and MDMA.

In 2017, Dr Ross, a clinical psychologist in palliative care at St Vincent's Hospital, attended a psychedelic symposium where one of the speakers took to the stage and put up a slide titled "Introduction to Psychedelic Research in Australia". He then flicked to the next slide, which simply read: "Thank You!" The talk was over.

"There was a roar of laughter," Dr Ross recalls. "I remember sitting there and I was like, really?"

Dr Marg Ross says she has been expecting a public backlash after initiating the program, but it hasn't come. (Australian Story: Simon Winter)

For years, Dr Ross had been frustrated by the limits of conventional therapy when working with people who were dying. She knew she had to do something.

Studies in the US had highlighted the potential of psilocybin-assisted therapy as a treatment for anxiety and depression in the terminally ill, and she decided to see if she could initiate something similar at St Vincent's.

She approached Justin Dwyer, a psychiatrist who headed the hospital's Psychosocial Cancer Care department. "That was the first and most pivotal 'yes' that I needed to hear," Dr Ross explains.

"It's not something I was familiar with and I wasn't quite sure how it would land within St Vincent's," Dr Dwyer recalls. "But she sent me the research and I could see there might be something on offer here."

Dr Ross spent nine months on the trial application, outlining exactly how it would work and addressing every conceivable thing that could go wrong. "I thought, I'm going to make it really bloody hard for them to say no. And they approved it."

Dr Justin Dwyer says he feels "completely changed" after helping lead the trial.  (Australian Story: Simon Winter)

When the trial was announced in January 2019, Dr Ross and Dr Dwyer steeled themselves for criticism. "We were expecting massive backlash," Dr Ross says. "'Why are you giving mushrooms to people who are dying?' You know, all of that. And it just didn't happen."

There was a flurry of media attention but the tone was uniformly positive. "Clearly there was a massive appetite for something different," Dr Dwyer says.

"Psilocybin won't cure cancer," Dr Ross explains. "It won't cure their terminal illness. But what we're hoping is that the treatment will help them face the end of life and what's to come."

After the announcement, Dr Dwyer and Dr Ross were inundated with enquiries and began a rigorous screening process. They needed to ensure potential recruits were dying, and had to be confident participants were psychologically robust enough to deal with the powerful and potentially confronting effects of the drug.

"People who have a psychosis, people who have bipolar, we know that it can be unsafe for them," Dr Ross explains. "But on top of that, there are people who have got perhaps raw and unprocessed trauma — we've got to be really careful there because people can be re-traumatised."

Lindy Bok says she needed something different to deal with her diagnosis. (Australian Story: Simon Winter)

'A lifetime of feeling'

The dose is taken in bed in a small hospital room transformed into something more like a wellness retreat. Light flickers from dozens of small electric candles, the air is lightly scented and there is an ethereal soundtrack curated to guide the participant through the experience. `

The dose the participants receive "will produce quite a powerful, intense effect in pretty much anybody who takes it", Dr Dwyer says.

"It's a whacking dose," Dr Ross concurs.

It's been two-and-a-half hours since Lindy took psilocybin and she's visibly unsettled, reaching out for tissues and pushing them hard against her face. After a series of shuddering breaths, she reaches out to Dr Ross. "Music off, please," she says urgently. "Don't leave me there."

"Let's take a pause," Dr Ross says as she gently removes the headphones. "We can always go back in a minute."

"How can there be so much emotion in there," Lindy exclaims, as Dr Ross and Dr Dwyer lean over her from opposite sides of the bed. "It's a lifetime," Dr Dwyer says soothingly. "It's a lifetime of feeling."

Reflecting later, Lindy says it is the most emotionally intense thing she's ever done. "The psychedelic took me places in my emotions that I don't think I would have been willing to go to just by myself, or I might not even have been able to access without the psychedelic.

"It was so intense that the desire to come out of it was really, really strong and I remember saying to myself, 'I'm never going to get this to do this again, lean into it'. And so, that's what I tried to do. I tried to be really strong and just lean into it."

Participants are supervised closely as the drug has been likened to having up to 20 years of therapy in one hit. (Australian Story)

Psilocybin and other psychedelics appear to work by changing the way parts of the brain connect and interact, resulting in radically altered perception.

"People can feel warped, disembodied," Dr Dwyer says. "They can have visionary experiences that are just impossible to put into words but come with very powerful feelings."

The drug can elicit a feeling of transcendence and awe and give the user a sense of universal oneness. "For some reason, it kind of allows people to just go, 'OK, I get it. Death happens. It's all part of it'," Dr Ross explains. "And there's this kind of remarkable letting go."

The potential of these drugs for treating depression lies in the way they allow people to abandon rigid, long-held ways of thinking.

A useful analogy is to think of water running across a landscape. Water naturally finds preferred pathways and over time forms deep ruts. Similarly, neural pathways in the mind can become fixed, resulting in rigid, reflexive ways of thinking and experiencing the world. For people with depression and anxiety, negative thoughts can become intractable and self-perpetuating.

The belief is that psilocybin, by creating different connections within the brain, smooths over that landscape, allowing problems and relationships to be looked at in a fresh way. This willingness to perceive oneself differently can be leveraged by therapists.

"The psilocybin helps the therapy work better," Dr Ross explains. "It really kicks the doors open. The intensity of the psilocybin experience has been likened to having 10 or 20 years of therapy in one hit."

'I cried like I'd never cried before'

Participants in the St Vincent's trial take two doses, six weeks apart. Half of those receiving the first dose get a placebo but everyone gets psilocybin for the second dose. Each dose is preceded by three days of therapy and there is a final therapy session the day after.

During the dose session, participants wear an eyeshade so they aren't distracted by external stimuli, thus encouraging an internal focus. They also wear noise-cancelling headphones, allowing them to fully immerse themselves in the musical soundtrack.

"Music is really quite augmented when you have psilocybin," Dr Ross explains. "We've always said there's four therapists in the room — the two therapists, the psilocybin and the music, and that really threads them through the experience."

The reasons for there being two therapists are surprisingly mundane. The dose lasts up to eight hours and the patient can't be left unattended, so having two therapists allows for toilet breaks. Two therapists also make it easier to manage the amount of information uncovered in five consecutive days of therapy.

The psychedelic establishes new connections within the brain. (Australian Story)

Dr Dwyer and Dr Ross had been friends and colleagues for years, but they found conducting therapy together initially strange and uncomfortable. Dr Ross is a psychologist who incorporates art and poetry into her therapy. Dr Dwyer is a psychiatrist who jokingly characterises his approach as "looking up at the sky and then repeating what the person said with your eyes shut".

They are, in many ways, an odd pair. Dr Ross is small, ebullient and tactile. Words spill from her, punctuated by frequent bursts of laughter. Dr Dwyer is thoughtful and reserved, with an owl-like intensity and a soothing, melodic voice. But their respect and affection for one another is obvious.

"I think they complement each other really well," Lindy says. "They're a good team. Artful, artful in what they do."

For much of the six hours that Lindy spent under the influence of psilocybin, she lay relatively still, often sobbing but utterly immersed in the experience.

"People have asked me, what was it like," she says later, "and it's just so hard to actually articulate it into words.

"It was as if I had this movie going inside my head but there weren't any images from my actual real life. It was more like images that were created through listening to the soundtrack that had been put on for me. It was like the music was starting to create images for me."

Lindy Bok says participating in the therapy was intense but transformative. (Australian Story)
She is one of 35 terminally-ill people chosen to take part in the trial. (Australian Story)

It was an intensely emotional experience that, at times, felt utterly overwhelming.

"I felt like I cried like I'd never cried before in my life. At the end of the six hours, I was emotionally stripped. Absolutely stripped.

"It took me back to things in my childhood. It took me back to things in my early adulthood. And they were really important things to address so that the time I've got left, I can be as emotionally well and robust and content as I can be."

Lindy didn't interact a great deal with Dr Ross and Dr Dwyer. The time to unpack the experience comes later. On dose day, the therapists are there to monitor, reassure and encourage.

"Trust yourself; you're getting yourself through this," Dr Dwyer says gently at one point when Lindy sits up in bed, momentarily unable to deal with the intensity of the experience. "Your feelings are really important. Really important. And they're also helping guide you through this."

There are moments of light relief. At one point when Lindy gets up to go to the bathroom, she laughs at Dr Dwyer, comparing him to one of those bobble-headed figures people put on car dashboards. Moments later, she recoils at Dr Ross's polka-dotted outfit. "You should not wear that skirt when people are taking their dose," she says, eliciting a gale of laughter from Dr Ross.

A bombshell from authorities

The final dose in the St Vincent's trial was delivered in April and the results will be published later this year. There are now half-a-dozen studies into psychedelic-assisted therapy underway in Australia, with many more in the pipeline. While the movement is gaining momentum, few in the research community thought the treatment would be publicly available any time soon.

But in February, the Therapeutic Goods Administration dropped a bombshell, announcing that, from July 1, psilocybin and MDMA could be prescribed by approved psychiatrists for certain mental health conditions.

The TGA's decision put Dr Ross and Dr Dwyer in an awkward position. Having witnessed first-hand the extraordinary potential of this treatment, they want to advocate for its use. But, at the same time, they feel the need to sound a note of caution.

"Although I can see the benefit in it, I can also see that it's not for everybody," Dr Dwyer says. "It's a very confronting process. I'd like to see a much greater appreciation of who this is actually for and who it's not. And I don't think that we're there yet."

Before they began the trial, they anticipated objections that never eventuated. Instead, they've witnessed a growing evangelism around psychedelic therapy that worries them. Dr Ross thinks it's got to the point where people are "exaggerating the benefits and completely dismissing the risks, which is a problematic place to be".

Their greatest concern is how and by whom the drug will be delivered. The TGA recommends that the minimum standard of training for a therapist be at the level of a clinical psychologist, but the decision ultimately lies with the ethics committees at the institutions delivering the treatment.

"The work has required every minute of training I've ever had and then it's forced me to learn a lot more as well," Dr Dwyer says. "To do this work properly, I think the therapists need to be people with the highest possible levels of training and accreditation."

"You need a bit of seasoning as a therapist," says Dr Ross. "Things can come up for people that are really quite tricky so you need to be able to know how to pivot and respond to that very quickly."

"The dose day is not like you're just in happy land," Lindy says. "It's scary, scary stuff if you allow yourself to go to those dark places in your mind. If I wasn't emotionally robust before I went into it, I actually feel like it could have done a lot of damage. It's got to be done by therapists who really, really know this stuff."

Lindy Bok was initially given between six months and two years to live after her cancer diagnosis. (Australian Story: Simon Winter)

Dr Ross and Dr Dwyer struggle to see how enough therapists can be trained to deal with the demand if psychiatrists start prescribing psilocybin from July 1.

"We really need to establish safe and clear guidelines about who can offer this work with people who are really quite vulnerable," Dr Ross says.

"Going along and simply doing a week-long course into the use of psychedelic medicine, it's the same as going and doing a course on how to replace one of the valves in the heart and then thinking you can just go out and do those procedures," Dr Dwyer says.

"You need to be a highly skilled cardiac surgeon before you get to the replace the valve operation. And I think this is the same."

For Lindy, the therapy has been transformative. Months after her dose, she continues to feel the benefits, despite her medical condition worsening.

"It's changed everything," she says. "There's this lightness and peace that I wasn't experiencing before I started the study. I can't fix dying but at least I feel more emotionally peaceful with it."

Despite their reservations about how the TGA's decision will play out, Dr Ross and Dr Dwyer have been deeply moved by what they witnessed.

"From the outset, we knew we were doing something pretty different and pretty special," Dr Ross says. "But what we've seen has surpassed all of our expectations.

"Obviously it's too early to give lots of details about what those results will bring until it's peer-reviewed and analysed, but certainly from a clinical point of view, we've seen really meaningful change happen."

They have seen people who were paralysed by despair come to a place of profound acceptance, able to engage once more with family and friends and enjoy the time they have left.

"I feel completely changed by the experience of this trial," Dr Dwyer says. "I am not the same psychiatrist I was before. I don't know what I'm going to do, but I know I can't go back to doing what I was doing before the trial started."

"It was just extraordinary," says Dr Ross. "I have no words for it, and it has had a profound impact on me that I will be trying to understand until I meet my own death one day."

Watch 'Changing Minds' on ABC iview.

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