(6-26-19) I’m often asked about mental health treatment in other countries so I was delighted when I met Rebecca Shepski after I delivered a recent speech. She told me about services in Australia and how those compare to what happens here. The differences became brutally and tragically apparent to her when a relative experienced a psychotic break and his family couldn’t get him help. In this blog post, she describes what worked so well in Australia, discusses her own family’s experiences here in America, and asks why we are failing so many. Her’s is an important contribution.
“I was dumbfounded to learn the American system was so complicated and ostracizing for families.”
By Rebecca Shepski
The first and only time a patient of mine took their own life I thought I might never recover.
I was a case-manager in our state-wide forensic mental health system in Victoria, Australia. FPs, as forensic patients were called, had committed serious offenses, generally murder or attempted murder. During the course of their court proceedings it was determined that their mental illness had played a causal role in the crimes committed. For most, they had acted deliberately on command hallucinations. Most were terrified and thought that by killing that particular person they were actually preventing a more heinous crime from occurring.
One case involved a young man who believed he was protecting the children of the world from a man he thought was not only an alien, but also a pedophile. The voices in his head guided him through the various steps of murdering him so that the children could be safe. This pedophile turned out to be his father. Once he became well, there wasn’t a consequence or sentence in the world worse than his own self-deprecating thoughts. He was placed on suicide watch and as I escorted him on a walk one day, he asked me this striking question: “Have you ever had a nightmare where you did something so horrible that you wanted to die?” I hadn’t. “It’s like I’m in a nightmare… I killed my Dad… and I can’t wake up.”
I took the time to read through every file on my unit. 15 stories of similar atrocities equally full of horror and sadness. The thing that struck me most, however, was that every single patient had sought help from a mental health provider prior to committing their offense.
Every single one had been failed.
Shifting from FPs to Adolescents: Hoping to Prevent Rather Than Repair
It was that knowledge and the suicide of one of my forensic patients that finally convinced me of the futility of where I was and fueled my move into adolescent mental health. I desperately wanted to be part of closing that gap. I wanted to prevent rather than repair. If I could be a case-manager that saw the signs and advocated fiercely for rapid responses and inpatient admission when known signs of risk were present, perhaps I could prevent at least one person from ending up in the forensic system.
My migration across to adolescent mental health landed me in the deep end of the very deep end.
I didn’t know at the time, but the service that hired me was internationally leading in their program provision. They had developed a model that provided continuous care from the moment of first referral to final discharge into community services 18 months later. Once someone made a first concerned phone-call about a loved one, friend, or neighbor, the onus was on us to figure out if and what kind of care the person needed. We investigated each circumstance and until we had seen the person for ourselves, no referral was discarded. Once we’d assessed that the person had likely symptoms of psychosis, they were automatically referred to an outpatient case-manager who would partner with a psychiatrist to provide comprehensive care and service coordination for that person. A psychotic can not bear the responsibility of complex service negotiation. They are psychotic.
As a case-manager, it was my job to literally win over my patient. We knew that engagement was the make it or break it factor for good clinical outcomes. If the patient didn’t like and trust me, they were much less likely to take my advice. Poor engagement was strongly correlated with higher rates of medication non-compliance and poorer attendance at outpatient appointments.
The power of the human connection is simply that strong.
A client, Linda, who became particularly dear to me over the course of our 18 months together, relapsed as we approached her discharge date. That was not unusual. After 18 months together walking through a person’s worst nightmare, experiencing stress at the thought of venturing out from our support was common. As Linda began to deteriorate, her psychosis would convince her that people who had died were still alive and that a conspiracy existed to keep their whereabouts from her. It was our strong clinician-client engagement that allowed her to trust me when we had to increase her medication. She was able to hold her psychotic beliefs in a state of ambivalence because it was me that challenged her to do so. Because of that engagement and her own spectacular courage, we were able to fend off a full-blown episode and refer to those weeks as her ‘blip’. No hospital admission required.
I would engage not only the patient, but their primary caregiver, which was usually the patient’s parents.
We would become a team, locking arms in the fight to bring their loved one back. They would share their grief and shock at having had a normal teenager turn into someone they didn’t recognize or comprehend. I would listen to them and empathize deeply. I would equip them with practical ways to care for their child; good nutrition, ensuring adequate sleep, exercise and medicine. We gave them information on ways to lower their stress and create routine. I would teach them signs of risk and how to de-escalate. We would make a plan for relapse and they would learn early signs of impending deterioration specific to their child. Primary caregivers would act as in-home monitors, feeding me information about symptoms and if medications were taken or skipped. They bore the brunt of their child’s emotional outbursts and difficult behaviors. Some would go without sleep to keep watch over their child as they slept and ensure they didn’t wander off in the night. But even in their most exhausted states they were generally the best sources of information and undoubtedly their child’s most fierce advocate. Without them, our assessment lacked depth and longitude. Without them our discharge plans were porous. Without them, the voices crying out for continued funding and political change were fewer and quieter.
We had no waiting list. We didn’t believe it was ethical to tell a psychotic young person to wait.
Psychosis is degenerative in its nature. Depriving a psychotic person of immediate treatment is knowingly allowing brain damage to occur. For the same reason, the Victorian Mental Health Act gives weight to “deterioration of mental state”. It allows an assessing clinician the legal clout to involuntarily admit someone if is likely the person will experience deterioration in their mental state if treatment is not provided. That aspect of the law acknowledges that the very nature of psychotic illness is that it keeps people from having insight; they cannot recognize their own need for treatment. Their resistance to treatment is often a symptom of the illness itself. Therefore, we take on responsibility for caring for the person when they are unable to act to care for themselves. By doing so, we speak to their inherent value. We say to them “you are worth protecting.” We take on their care as if it is an entrustment. We treat them in the least restrictive manner possible because they are people, just like us. And when, recovery happens – because it does happen- and they are well enough to make informed consent, that power is rightfully returned to them.
As first-episode case managers without a wait-list, we bore large case-loads and became masters of managing risk. Those who were highest risk or newest to the service we saw weekly or even bi-weekly if needed. As they became settled, appointments would drop to every two or three weeks with phone-calls in between. If patients didn’t show up, we had cars available and we would go to them. If a client was difficult to engage and high risk we had an intensive case-management team that would only take on loads of up to 8 patients each. This allowed them longer and more frequent visits with the patient so that risk could be monitored more closely.
We had in-house support groups, art and music programs to process through the identity and trauma issues associated with life-disrupting illnesses. We had strong links to housing and drug and alcohol services who would all come to us instead of requiring our patients to come to them. We took responsibility for the coordination of all of those services off the shoulders of primary caregivers. Down the hall we had a clinic to specifically address the needs of clients with significant personality disorders and a separate service for eating disorders.
It was a one-stop shop model of service provision that took the weight and complexity out of negotiating the service network. Instead of patients and their families trying to figure it all out, the burden was carried by those who knew those systems best.
By far, though, my favorite aspect of the model was our ‘continuity of care’. If I became somebody’s case manager, I was their case-manager for the full 18 months, through both inpatient and outpatient services. Whether they were in the community or so sick that they had to be in hospital, I was their case manager. I was their person. I knew them best and I had already engaged them and their family. I was able to be a consistent figure to the patient amidst the chaos of their admission and provide important and intimate knowledge to the treating in-patient staff. One patient was consistently getting unwell during menstruation, could they investigate hormonal balance? Another was prone to eating soap when they became unwell. Could their soap bar be removed? Another’s mother had suicided while she was a psychiatric patient. Could they be extra careful with contraband and provide extra comfort for her distress? She hates hospitals. Twix bars are her favorite.
While a patient was admitted to a hospital we would actively seek to engage primary caregivers. We would encourage visits and participation in doctor rounds. A discharge simply would not move forward without primary involvement. Who are you discharging to if not to the primary themselves?
There was no HIPAA creating a wall between us and the family. We had the power to engage whoever and whatever we needed to provide the safest and best care for our clients.
Fast forward ten years and my American brother-in-law, John, suddenly became unwell with what looked like late-onset bipolar disorder. A friend recognized signs that he was becoming unwell and tried to get him help, but the psychiatrist they found didn’t think John needed intervention. At the time, John had been a university professor of ethics but as he began to deteriorate, his behavior became increasingly disorganized. He was unable to work and started to do things which were completely out of character. Eventually, he was arrested when he walked into the staff-sleeping quarters at a major hotel and stood there, watching people sleep.
Thankfully, the police recognized signs that something was not right and transferred him to a psychiatric facility.
Nobody could tell us where. Several days later, John’s parents received a call from the facility, informing them of his whereabouts. He was almost catatonic. Upon discharge he was given his medications, prescriptions and told to get a psychiatrist. There was a 6 week waiting list. During that time, he stopped his medication and was arrested in a different state for erratic driving. His parents advocated for him to be taken immediately to a psychiatric facility. The hospital wouldn’t even confirm that he was there when they called. It wasn’t until they showed up and refused to leave unless they saw their son that they were allowed in. No information was given to them about his treatment or his medicine. John wouldn’t sign the HIPAA papers allowing it. He was discharged without any input from his parents, back into their care.
As my in-laws recounted their frustrating story to me via Skype,
I was dumbfounded to learn the American system was so complicated and ostracizing for families. I was shocked to learn that commonplace practices seemed to ignore aspects of the illness itself. American hospitals ask a psychotic person to sign a consent form allowing the hospital staff to communicate with their family and friends. Consent. A psychotic person is unable to give consent. If you can prove that you were psychotic at the time of signing, any document you signed is considered, by law, null and void. Yet hospitals insist on it and if the patient fails to sign the form, their primary caregivers are restricted from having access to their loved one and to the information needed to provide them with the best care upon their discharge.
No education was provided to them. No coordination of services. All they had was a crisis number and instructions to get him into a community psychiatrist. Again, John was discharged. They took him home and did they best they could. Again, he was poorly engaged in treatment. Again, he stopped taking his medicine and the brunt of his care fell to two parents with no mental health training whatsoever.
Just before midnight on an August night, John left the house and got in his car and drove along I-80. When he didn’t return shortly after, his parents informed local police that he was not fit to be driving. Unfortunately, that call did not go out to patrolling police until some time later. It was too late.
John died that night. When his car ran out of gas on I-80 he got out and began walking along the road. At some point, he walked into the line of traffic. He was hit from behind and killed.
There were warning signs.
But nobody had educated those closest to him about what they were. He wasn’t engaged in treatment – he still didn’t believe he was sick. He wasn’t taking his medicine. He had been increasingly irritable and accusatory. He believed his parents were deliberately doing things to antagonize him. His sister, who was visiting, was disconcerted by the blank look is his eyes. Her gut warned her that he may take off and disappear again, so she locked herself and her two-year-old daughter in the bedroom that night, fearful that he might try to run off with her child. He was unsettled and didn’t want to go to sleep. He complained of an upset stomach. The following day he was to appear in court for a charge of erratic driving. So many signs. But not enough law to allow anyone to act and not enough pro-active education to allow those on the front lines to see what is in front of them.
My father-in-law has endlessly ruminated on the “what ifs” since that day. Because that is what love does. It tries to figure out what went wrong. It even tries to undo what happened.
“What if I just stopped him? What if I took it upon myself and I just wrestled him to the ground?”
But he didn’t know. Even if he had tried to stop John from leaving, he would’ve placed himself at risk of being charged with assault while still not guaranteeing adequate care for his son. He could have called the local psychiatric service for help but John would not have come even close to the high bar of ‘imminent risk’ required for them to act.
The hands of those most able and willing to respond are tied.
There is no blame with those who don’t know. But what about all those who do know? We already have the data on risk to make more informed decisions. Imminent risk is not measured only by a verbal threat. It is also measured by whether the person has had previous violent behavior when unwell, by whether they believe they are being threatened in some way – people who are scared for their safety do drastic things to protect themselves. Risk is high when a person who is psychotic is intoxicated or hearing ‘command’ style auditory hallucinations. It is high if they are provoking others, believe someone is an imposter or if they are also depressed. It is high if they have active symptoms and they choose to drive – it’s just too hard to concentrate. We already know this. I knew this when I was a case-manager and that was 13 years ago.
So if we know, and we do nothing, how can we possibly not be part of the problem?
There are better ways to do things and we can humbly learn from other countries who have better outcomes than we do. Our loved ones need and deserve that.
About the Author: Bec Shepski is an Australian-born social worker, mental health educator/advocate, campus minister and mother of three. She lives with her husband, kids, foster-by-choice daughter, and miniature border collie, in State College, PA where she is working to bring mental health education to other university ministers. You can contact her at bec.shepski@gmail.com
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