Hello I Want to Die Please Fix Me
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Apparently you can make psychiatric advance directives—instructions about what to do, where to take you, what your wishes are should you descend into psychic crisis. You can designate power of attorney or a substitute decision-maker who calls the shots when you can’t; you can specify treatment preferences. “It’s basically the same instrument for health care decision-making that would authorize a living will,” says Jeffrey Swanson, who is a psychiatry and behavioural sciences professor at Duke University in Durham, North Carolina. Except you’re still alive when people are supposed to follow your directives. “They’re basically designed for people who lose capacity to consent to their own treatment and to give people the ability to plan ahead.”17 In the US, about twenty-five states have some kind of legal framework governing psychiatric advance directives. They also have override features.
But take note: if you’re rushed to emerg after a serious suicide attempt, no one’s going to respect your “Do not resuscitate” directive. I’ve asked both my own doctor and others about this beguiling option. No dice.
But I figure these directives’ limited legal weight is outweighed by the act of writing them. It lets people assert a degree of control over something disturbingly outside their control. “It’s the empowering function of sitting down and documenting, ahead of time, your own preferences,” Jeffrey Swanson says. “It’s kind of like a psychiatric resume—what you look like when you’re in a crisis, who should be notified, what medications you’re allergic to….Even if they never used it, they feel more empowered. Just like you might feel better having an insurance policy even if you never use it.”
Subsumed by such an agency-stealing disease, we need all the empowering we can get.
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THERE ARE A MILLION indignities involved in being hospitalized against your will but one thing that came up in my interviews with both the committed and the committers was that there are degrees of crappiness when it comes to losing your freedom in this way. It’s unpleasant but it doesn’t have to be degrading. It’s agency-thieving but shouldn’t mean losing your right to due process.
DEANNA
Deanna remembers the darkness of the psychiatric hospital in Kingston, Ontario, where she spent the better part off our years. Not from an absence of windows, although what portals there were, were barred. But a dark greying sense of remove from the outside world. And a disquieting quiet that her three children pierced when they raced down the long echoing grey hallway that was almost always empty. Mandatory activities included cooking and enforced socialization that she only periodically had the energy for. The ancient elevator creaked each time she took it to the hospital basement for electroconvulsive therapy.18
She was paralyzed with fear of being admitted not just to a psychiatric ward, but an entire hospital dedicated to the care and warehousing of the mentally ill. Institutionalization was terrifying on its own but the prospect also reinforced her conception of herself as unwell, unfit, unable to care for those she loved or be the person she thought she was. “I couldn’t imagine that that was me and my life—that things had fallen apart to the extent that I needed hospitalization. Not only did I not trust myself, in terms of my safety and my care, but my doctor didn’t.”
Deanna’s first stint as a psychiatric inpatient lasted nine months before she showed a marginal improvement and went home. “But it didn’t last. I was only home for about six weeks and then I was back to hospital.”
So it went. Deanna figures she lived in hospital for 85 percent of the subsequent four years, exhausting a glossary of drugs and other treatments.
“I couldn’t do anything. It was hard to get dressed. It was hard to shower. It was hard to eat.” She’d set out on a staff-chaperoned walk outdoors with other patients, along the shore of Lake Ontario, only to find herself depleted within a block and escorted back inside.
LESLIE
Of her first New York City psych ward, Leslie recalls Band-Aid-brown walls, ceiling, floors. No handles or doorknobs. She lost her privacy and her phone and, with it, any lifeline to her loved ones outside the hospital.
“The environments they put you in would make you want to kill yourself, too,” she tells me. “There you are, in a room, there’s nothing on the wall to look at, it’s plain and it’s old and the paint’s chipping, there’s no curtains on the wall ’cause they’re afraid you’re going to hang yourself. It’s convent-style living without a cross on the wall, ’cause they’re afraid you’re going to jab someone’s eye out….
“Imagine, if you can, how demeaning it is to be in this hospital room that is so banged up and then walk into a shower that is covered with mould and there is only cold water, no hot water.” 19
Always, there were roommates. Some better than others: Leslie found herself living beside “a lovely, lovely woman” who thought she was a high-powered insurance firm executive; another said she was a go-go dancer. But the lack of privacy and the prevalence of sleep-filching noise were a nightmare. “There was one woman next door to me that would throw furniture against the wall at night….And there’s some that just roam around the hallway babbling to themselves and they don’t control them. You can’t sleep. You literally can’t sleep in those circumstances. They wake you up every half hour. You can’t recover.”
CINDY
Cindy isn’t sure she wanted to die when she slit her wrists in her dorm room in the first semester of college in Iowa but it was enough to get her under round-the-clock scrutiny in a psych department affiliated with her school.
“Oh god, it was terrible….I was under suicide watch, so they had to come check on me every fifteen minutes. I was not allowed to shower alone. There was a phone in my room but the cord was extremely short—I had to sit at the desk hunched over to make any calls….I remember one of the girls that was there, she too had a lot of cuts and scars on her arms. Hers were much worse than mine and I remember sitting there thinking, ‘I shouldn’t be here.’”20
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MULTIPLE TIMES EVERY day Andrew Lustig has to decide whether the person in front of him is too unwell and too unable to understand their own unwellness and in too much danger as a result to be let out on their own. The psychiatrist at Toronto’s CAMH works in an urban psych emerg with a large number of acutely ill patients. His office is in a building whose halls are blocked off by auto-locking doors and when I visit, the patients I see—mostly men—seem more out of it than dangerous.
“The most important question you answer in the emergency department is, ‘Do they stay or do they go?’ and that really hinges on the issue of risk: How risky is this person, and what bad things are likely to happen if they leave the hospital today?”21
It’s a tricky calculation. He wants to get at not just why and how they ended up in the psychiatric emergency department that day, but also at their history of mental illness and of hospitalization. Have they been in treatment? Have they been in hospital before? Have they harmed themselves or others in the past? Like any good journalist, he tries to get multiple sources to create a picture—the person themselves; whoever brought them to hospital if they didn’t come on their own; any close family or friends he can track down. He’ll ask if the person has been thinking of killing themselves, whether they’re planning on doing it, how they’d do it. He’ll watch the person closely to see if their affect and behaviour match their words. Invariably they’ll have an agenda: either they want to be admitted or they don’t, and they’ll act and answer questions accordingly. So Lustig listens to what they say but doesn’t take their word for it.
Doctors don’t have much time to decide whether to put someone on a seventy-two-hour hold, so often that commitment is out of an abundance of caution, he tells me—to keep someone safe in case they may harm themselves, but just as importantly, to give clinicians the chance to observe the person under a great deal of stress. You learn a lot about someone by how they cope in that kind of crisis hospital environment, where they’re deprived o
f their belongings and their ability to smoke or decide when to eat and when to sleep.
It’s at this point in the interview that I learn that while CAMH, like my hospital, doesn’t let anyone on a seventy-two-hour hold outdoors even on escorted trips, it does let them wear real clothes. You can keep your own clothes?! You can hear, in my audio recording of our conversation, my poorly masked incredulity, my indignation still fresh more than two years after I was denied my own clothing while certifiable. “It’s interesting,” he muses. “I spoke to an ethicist about that here once and they said they thought that was unethical to take away somebody’s clothes. It’s quite dehumanizing to have to wear the hospital clothing.” YES. Thank you. I brought this up later with my psychiatrist, who said forcing people to wear hospital gowns is a precautionary measure in case they escape: makes them easier to spot.
Many, many, many times, Lustig will let someone go who isn’t well, who would benefit from care, but who doesn’t meet the legal criteria for committal. It drives family members mad.
“I cannot tell you how many conversations I have with angry families where I’m letting the person go,” he says. “The family is yelling at me that they’re going to sue me if something bad happens; I just repeat: ‘I understand. And I’m sorry. But it’s not really up to me—these are the criteria….Just because they’re angry or they’re going to lose their schooling or lose their house, I’m sorry but I can’t detain someone on those grounds.’”
No one likes to admit they make treatment decisions about an individual based on the needs of someone else. But it’s inevitable, says Joel Dvoskin, the forensic psychologist. “So if Joe comes in, and is at an acuity level of eight, and I admit him and I settle him down to a five and you say, ‘Well, you really should be around a three to get released,’ but I don’t have any empty beds and at my front door is Sam and he’s a ten….There’s pressure to release people maybe when you would have rather waited a few days.”22
“Of course” it’s better to get more people into treatment of their own volition, says longtime involuntary treatment advocate E. Fuller Torrey. But he says the number of people being committed, either on an inpatient or outpatient basis, is reprehensibly low. “I’ve been told probably two hundred times if I’ve been told once, ‘If you want to help me, doc, just call the CIA and tell them to stop the voice in my head.’…So what do you do with someone who has no awareness of their illness?”23
Short of death, which is rare but not rare enough, perhaps the most damaging outcome of involuntary hospitalization and treatment is a toxic all-consuming mistrust—of psychiatry, psychiatrists, the medical profession. Of everyone. Of oneself. I’m sure some people emerge from committal in a better mental state and genuinely grateful that someone saved them from themselves, but I know for a fact that coercive treatment sours some people on medicine for life.
Torrey knows hospitalizing and treating someone against their will fosters a lifelong mistrust of psychiatry that means people never seek out or trust a clinician ever again. He contends the benefits of humane coercive treatment for people in need of an intervention outweigh the costs of that deep mistrust, even if he doesn’t know how to dispel it.
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DOES COERCION WORK?
Depends whom you ask and what you’re looking for. Where outcomes are better, it’s hard to tell whether you couldn’t have gotten that improved result without coercion.24
People are less likely to kill themselves while under close supervision in a medical institution than they are outside of it, although hospital suicides do happen: there were 548 deaths in Ontario psych wards between 2008 and 2016, 24 of them suicides.25 So if you keep someone in hospital when they might otherwise have killed themselves, you’ve saved a life. And if you frame your choice as being between detention and death, you will err on the side of detention even if the possibility of death is relatively slim. But detention is not without its perils. And there’s no control group for a human being: it’s impossible to prove someone would have killed herself if set free.
One of the reasons all this is difficult to measure is that a person who doesn’t trust their clinicians or lives in fear of getting into trouble with them is unlikely to tell those clinicians when things are going badly. “People do better when they’re committed,” Joel Dvoskin says, “but it’s not clear that they’re doing better because of the coercion: it may be that they’re doing better because of enhanced services that could have been provided voluntarily.”
Then there’s the you’ll-thank-me-for-this-later trump card. “People who are admitted involuntarily, the vast majority of those individuals at a later point will say, ‘Yes, that was an appropriate decision,’” says Richard O’Reilly, a psychiatrist in London, Ontario. “I agree we should try to provide service in the community. But our general hospitals, our local community hospitals, are community resources. And their job is to keep people safe.”
Not everyone rages against being forcibly treated. In a 2013 Huffington Post op-ed, a woman named Erin Hawkes compared a patient without insight into her mental illness to a toddler who thinks it would be fun to play with knives. “Though some psychiatrists rely overly on their psychopharmaceutical powers, my brain is in fact too sick to heal on its own,” she wrote. “Please, someone, make choices for me when I cannot: choose to give me the treatment that, for me, has worked in the past. Medicate me. Don’t leave me to myself; I will play with those knives, and may not learn until I bleed to death what harm I have the ‘right’ to do.”26
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MENTAL ILLNESS PITS the rights of sick people against the desires of their loved ones more than maybe any other ailment. People want their family members to be taken care of, kept safe; an individual has rights to liberty and, when that is deprived, to integrity of the person unless that, too, is suspended. People want to know everything about what is happening to their loved ones and how they’re being helped and what happens next and what else can be done; an individual has rights to privacy, even when that means shutting out the people closest to them. Each jurisdiction has its own rules on when to override a person’s privacy, when it’s okay to tell confidential things to kin, and who gets to know. I’ve talked to plenty of family members who’ve raged against roadblocks to knowing what’s going on with the people they love.
Daryl Geisheimer was at his wit’s end—he couldn’t get a straight answer from the nurses or doctors caring for his son, Brian, in hospital after a suicide attempt, he told a coroner’s inquest after his son walked out of hospital and in front of a train. “I was trying desperately to get involved, to volunteer my availability and say, ‘I’m surely part of this program. I’m the parent.’”27
The system failed Brian and his family at numerous junctures. It appears one of them was communication. But even there, Brian’s consent would have been needed to share confidential information with his parents.
It can be a crazy-making trap, trying to get even the most basic information about a loved one who’s been spirited into a locked psych ward. It drove my parents nuts, those first few days in hospital and beyond, that sense of enforced helplessness and ignorance: they wanted to be involved in my care—they were there, after all, camped out in hospital for as many hours a day as they were allowed to be—and were told in no uncertain terms that my right to privacy as an adult did not include parental disclosures. “I didn’t have any resources,” my dad recalls. “We were just winging it. We were desperate. We were frantic. We were scared.”
But it’s all too easy to override a person’s right to privacy when that person is someone unwell whom you love. Mark Lukach’s book My Lovely Wife in the Psych Ward expresses the enraging heartbreak of caring for someone with severe mental illness better than just about anything else I’ve read. It also exhibits that easy override: he sits with his wife in the triage room as she answers a nurse’s questions on her first emergency department visit, and speaks for her when her answers are uns
atisfactory. This is benign and ultimately helpful: his testimony is far more reliable than hers. But it made me squirm: I’d have hated that, were I in her shoes. When she’s in remission and he tells her she can’t go to a concert because it would involve staying up late and probably driving and, when she resists, retorts, “I do get to tell you what to do,”28 he is being prudent and probably right but still I winced, vicariously infantilized, yanked back in time to pacing the wet sand on the Lake Ontario beach, yelling at my parents about whether I could be trusted to make decisions.
Here, again, my bias shows. Having something as basic as the right to confidential health information trampled is intensely disempowering at a particularly disempowered moment in your life. During my second psych-ward sojourn, my parents met my psychiatrist. Fine. They came back to visit me in my curtained-off bedspace saying the nice doctor had told them my next treatment option could well be electroconvulsive therapy. I was livid. He’d never mentioned that to me. Even if he had, I wouldn’t have been comfortable with him discussing potential treatment pathways with my parents. This probably sounds like an overwrought reaction, and it’s largely a matter of principle: I talk to them about all this a fair bit, fairly freely. But on my terms. This small, seemingly meaningless admission was profoundly destabilizing.
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