Hello I Want to Die Please Fix Me

by Anna Mehler Paperny

  And once you do the clinical questioning and someone screens positive for depression or suicidality, what then? In many jurisdictions, you’re in trouble. Your patient’s in a system ill-equipped to help them, that only has resources for the well-resourced.

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  JAVED ALLOO’S ETHNICALLY, culturally, linguistically diverse patient population in north Toronto has worse access to mental health care now, the family doctor figures, than they’ve had in fifteen years. I spoke with him about how he gets his complex patients care, as a GP, and it’s alarming to hear he often can’t.

  “It’s honestly so bad now, it’s scary. It’s worlds worse.” His frustration is palpable. “A decade or so ago, I could get someone in to see a psychiatrist in two weeks if I needed to.” Now, if he has a patient who needs to see a specialist “it’s pretty much: I’m going to be seeing you for the next eight months because there’s nobody else who’s going to be able to see you.”11 Or he’s had patients referred back to him after spending a week as psychiatric inpatients—individuals “who were well beyond my capacity of care….Even reading the psychiatrist’s notes, I can see the challenges they’re facing. And they’re like, ‘Okay, now I’m transferring this patient back to you.”

  About half his patients have coverage that pays for at least some private psychotherapy; the other half is essentially out of luck. He rarely refers patients to see psychiatrists or counsellors on an outpatient basis “because [the specialists] don’t have the capacity.” When his patients’ problems are beyond his scope but he can’t refer them elsewhere in this fiscal year or even the next, he subs out the specialization he can’t provide for the sense of stability he can. “Knowing that they have something…helps the safety feeling, internally.”

  Javed Alloo attributes his focus on patients with mental illness to his rotation in a psychiatric hospital in Kingston, Ontario, early in his career, and his work years later in an urgent-care clinic. It made him revise his idea of professional success. One of the soul-destroying things about caring for someone with a chronic condition is that you never win. Even if your patient achieves remission, depression’s spectre never fully dissipates. Much of the time you’re just trying to prevent irreversible decline. Maybe you can alleviate a heartbeat’s worth of agony. Maybe you can help a family deal with someone who’ll never get better. So your goal (to use an alliteration clinicians love) becomes “care rather than cure.” Alloo remembers his grandfather having talks about death with all the grandchildren at a very young age, and how those talks helped him learn to accept early on what he can’t change, and tackle all he can.

  “The expectations of what you’ve achieved, what you’re looking for as a win, changes. And as long as you can perceive the win differently, then you can say, ‘This is worth my effort.’”

  He figures most family physicians feel comfortable managing “relatively simpler cases of depression and suicidality.” It’s when people don’t respond to first-, second-, even third-line treatment; when they relapse repeatedly to the point where day-to-day functioning is impaired, that he needs backup from someone with more expertise.

  And that’s where things often fall apart.

  20

  Mental Health Is for Rich People

  As far as national chauvinisms go, Canada loves being The One With Universal Health Care. But if your illness is in your brain, that universality is a lie.

  In theory, in Canada, psychotherapy is paid for with public dollars if you get it from a doctor—a GP or a psychiatrist or similar. I was mind-meltingly fortunate to have a psychiatrist I first saw as an inpatient and who continues to see me as an outpatient, whose invaluable sessions are covered by Ontario’s public health care system. In practice, that seldom happens, and psychologists and other therapists aren’t covered. People who lack private insurance or can’t afford to pay out of pocket are out of luck.

  In the years following the implementation of the Affordable Care Act, a higher percentage of Americans had something resembling adequate drug and psychotherapy coverage than Canadians.1 North of the longest loosely guarded border in the world, unless you are extremely old or extremely poor or have your own plan (through your employer, for example), drugs tend not to be covered. Psychotherapy tends not to be covered, and when it is, it’s near-unattainable. The only thing public dollars consistently pay for is crisis care—the costliest, least efficacious way to treat any kind of mental disorder. Post-crisis, post-discharge, you’re on your own, and chances are good you’ll end up needing urgent intervention again shortly.

  All too often, in both Canada and the United States, if you don’t have cash, mental health care isn’t there.

  This is often true even if you have insurance: the kind of coverage you have can determine what happens to you when you show up at the emergency room, Mark Olfson, the thoughtful Columbia University psychiatrist, told me. People on Medicaid, the insurance provided to low-income Americans, are more likely to be discharged and sent home; people with private insurance are more likely to get mental health evaluations in the emergency department and are more likely to be admitted.2

  But this may be an indication of the resources available in the places people are accessing care rather than an indictment of doctors giving different attention to people based on their means. “The Medicaid people,” Olfson tells me, “are probably going to hospitals in areas of the country where there are very few inpatient beds and there are long lines and so forth. And they’re sent home, sometimes without even getting a mental health evaluation. So they’re getting a lower level of care for what’s ostensibly the same thing. I don’t think it’s the individual doctor saying, ‘Well, if you have Medicaid I’m not going to provide you with a mental health evaluation.’ That’s not the way doctors operate. But they do operate in environments where they have varying numbers of demands on their time. They end up practising in very different ways.”3

  Inequitable insurance coverage can shaft you as an outpatient as well. In the United States, psychiatrists are significantly less likely than other medical specialists to accept any kind of insurance—private or public. The greater your financial need the less likely it is that the psychiatrist nearest you will take whatever coverage you have. Just over half of American psychiatrists accept private insurance; but just 43 percent accept Medicaid—far lower than for non-psychiatric clinicians. And psychiatrists are less likely to accept insurance than they were a decade ago.4 That means you either have to pay cash or go elsewhere.

  “That’s a really huge problem,” Maria Oquendo, past president of the American Psychiatric Association and chair of psychiatry at the University of Pennsylvania’s Perelman School of Medicine, tells me when I call her, seeking clarity. In many cases, she adds, it’s because insurers undervalue behavioural health care, reimbursing psychiatrists so little it isn’t worth their time. “An insurer here in Philadelphia pays $44 for a ten-minute consultation. You can’t get a plumber to show up for that, you know what I mean? So it puts doctors in a very difficult bind.”5

  Mental health care is what economists call “price-sensitive”—cost changes, even small ones, can determine whether you get it or not. “It’s an interesting dynamic,” Tim Bruckner, who is an epidemiologist and public health professor, tells me in his office at the University of California, Irvine, where I’d sought him out because of his work on how public health measures change who gets or needs what kind of care. “If you break your arm it doesn’t really matter what the cost of the X-ray is: you’re basically going [to hospital to get one]. If the price of antidepressants drops by 10 percent, or psychiatric care drops, you seek more care.”6 That price includes travel, wait times and myriad indignities and inconveniences that can deter people from getting care for their minds that they otherwise might.

  Variable quality of mental health care can be an issue in public systems, too. Barely half of the 108,000 British Columbians in Professor Joseph Puyat’s study at the University of British Colu
mbia, all of whom had a depression diagnosis for which they were receiving public health care, received “minimally adequate” treatment. Even if you get your foot in the door, poorer people are more likely to get “poor or under-treatment by any published standard.”7

  So that’s bad.

  On top of everything else, you need to learn to make a fuss. If you don’t, no matter how your care’s paid for—private insurance, public insurance, out of pocket—you may get passed over or rushed through when you need something more. If my parents hadn’t pushed for a second opinion that, frankly, I didn’t want, I’d have been discharged post-suicide attempt with negligible follow-up. Being pushy takes determination and time and a degree of confidence in the system and your place in it. People who are marginalized in other aspects of their lives—by race, by income, by language, by immigration status—are less likely to have that confidence.

  And the people least able to haggle effectively are those with the most severe mental illness—either because they lack the wherewithal to do so or they don’t think anything will make them better or they simply don’t believe they deserve care. Or because their haggling isn’t effective—it’s easy to dismiss a crazy person’s kvetching no matter how justified. I’ve spoken to so many people who felt they weren’t heard, weren’t listened to when making concerns known. I’ve been in that position, talking to a nurse’s receding back. It’s a great way to deny meaningful care in the short term and ensure it won’t be sought in the long term.

  So you give up. You get sicker. You don’t know whom to call, where to turn to advocate for yourself when you can’t get an appointment with someone who’ll treat you. Maybe things get bad enough you end up in a psychiatric ER and maybe you get some helpful treatment there but chances are you get no follow-up afterward.

  More psychiatrists would help but that wouldn’t be enough: a study that Paul Kurdyak authored from Toronto in 2014 found that psychiatrists in urban areas—where they’re most highly concentrated—tend to keep seeing the same few patients rather than taking in new ones. Psychiatrists in Toronto saw 57 percent fewer new outpatients than psychiatrists in areas with a far smaller supply of shrinks per capita.8 “A small number of people have access to that kind of intensive service [that psychiatrists in urban areas offer] and many more are making do with either nothing or primary care,” he tells me.9

  I am an abashed beneficiary of this service inequity: living in Toronto, I see my psychiatrist as an outpatient on a weekly basis. This luxury no doubt steals time that could otherwise go to sick people waiting weeks or months to see someone. But I like seeing my psychiatrist on a regular basis. If the goal is my continuing to function and work and not die, I need to—these appointments are the only thing consistently giving me hope.

  Should there be visit frequency limits? Different pay scales? Psychiatrists designated as intake physicians for new patients? Would it help if psychiatrists were more closely associated with hospitals? Jury’s still out on that. Ontario tried to incentivize psychiatrists to see more urgent patients by offering a bonus to those who’ll see patients who’ve recently been discharged from hospital or tried to kill themselves. But results were mixed. And according to Kurdyak: “Collectively, we have a responsibility to meet a need.”

  He’d like to see clustered mental health care teams combining practitioners from different disciplines, with a triage-like structure in place to determine who goes where to get what care, and where they go next.

  South of the border, Michael Schoenbaum, as a senior advisor on the economics of mental care at the National Institute of Mental Health (NIMH), has been pushing Collaborative Care. I called him at the suggestion of NIMH’s Jane Pearson. “Everyone says they collaborate; that’s not what this means.” 10

  Schoenbaum comes at mental health care as an economist, trying to get his head around why we keep failing at getting basic, necessary interventions to people who need them.

  “We have these existing treatments that are a lot better than nothing, even if they are not everything we would want them to be. But quite a high fraction of people with depression don’t receive anything.”

  Right now, your family doctor diagnoses you with depression, sends you home with an antidepressant prescription. Maybe you’re instructed to come back if things get worse. How much worse is worse? What if worse means losing the will to bug people to help you halt and reverse that spiral? Initiating an intervention and then leaving the person being intervened upon to their own devices is bad in any field of health care, Schoenbaum says, but it’s especially bad in a condition characterized by floundering in isolation and a reluctance or inability to seek help. “This traditional medical model of, you know, tell the patient what to do and then leave it to the patient to come back and self-identify if they’re having a problem and ask for something different, just works really badly.” In his model, someone follows up. A health care coordinator—someone who doesn’t need to be an MD or even a health specialist—calls you a few weeks after your initial appointment to see how you’re doing—confirming you filled the prescription or followed up on whatever else was prescribed, confirming you’re taking it as directed, that it’s working, that the side effects are tolerable. “If the patient isn’t getting better, again, you reach out to the patient, say, ‘Look, we started you on this thing. We need to do better: this isn’t working for you. Let’s bring you back in.’”

  And perhaps more important than that patient-clinician liaison is a clinician-clinician link. Doctors talking to each other. That’s the idea behind Collaborative Care.

  In principle, right now, when a general practitioner feels they’re in over their head in treating a particular patient’s malady, they’ll refer that patient to a specialist for a consult. Sometimes, a clinician will hesitate to do that because they don’t know when they’re in over their head or, far more likely, because they know the patient will spend months waiting for that consult. Many non-specialists are hesitant to even ask if you want to die if they don’t know where they’ll send you if the answer is affirmative. The idea behind Collaborative Care is that if you’re a GP you can call up your psychiatrist colleague—maybe even walk down the hall and chat in person—and ask about your patient’s case, whether you should switch meds or try something else, whether what you thought was unipolar depression could be bipolar. It could mean problems are caught early; it would save money and improve outcomes. Models of this exist in little bits throughout the continent: family health teams, collaborative care units, whatever you want to call them. In Ontario you can bill for calling another doctor for advice and for providing that guidance. Governments like to tout such models as indications of innovative health spending but they remain the exception, not the rule.

  Right now, phone-a-colleague is not on the list of many health payers’ billable items. As Michael Schoenbaum said, “Most insurers don’t and wouldn’t cover this specialty consultation between the primary care team and the psychiatrist.”

  It’s a potential starting point, though—a health system with crucial connective tissue between doctor and patient, doctor and doctor. We need more, and more accessible, psychiatrists, both to provide expertise and to provide care for those people whose problems are more complex.

  And if you don’t want mental wellness to remain the purview of the privileged, if you don’t want poverty to doom people to debilitating anguish, you need to cover pharmacotherapy and psychotherapy like you mean it. Universally. For everyone.11

  21

  Trying to Heal the Littlest Minds

  Societies have a thing about children. They are precious bringers of the future, and the seat of all our anxieties. Are parents doing too much, or too little? Are teachers being too demanding, or not demanding enough? We fret over the ways they spend or don’t spend their free time, and what they do or don’t do with the latest technology available to them, be it video games or computers or cell phones or smartphones. Somehow, something is ruining a generation.

 
So it is with mental illness, where the spectre of crazy-sick kids looms large. Every year, more than three thousand North American children, teens and adolescents kill themselves. Tens of thousands more try. The US Centers for Disease Control’s annual survey of high-school students found that 8.6 percent of teens said they had tried to kill themselves. Girls were more than twice as likely as boys (11.6 percent compared to 5.5 percent).1

  And the death toll, for youth, is rising. Suicide rates among twenty- to twenty-four-year-olds increased 35 percent; twenty-five- to twenty-nine-year-olds, 34 percent. The rate for fifteen- to nineteen-year-olds increased 75 percent. The suicide rate for ten- to fourteen-year-olds more than doubled between 2007 and 2017. America’s overall suicide rate increased about 26 percent between 2007 and 2017. A big jump, to be sure. But not the spike we’re seeing with youth.2

  The rise in youth suicide is shocking the world’s suicide researchers and those caring for the suicidal.

  “We are flabbergasted, to be quite honest,” Arielle Sheftall, a research scientist at Nationwide Children’s Hospital in Columbus, Ohio, admits over the phone. “When you look at the percentages in ten- to fourteen-year-olds, it has so significantly increased to the point where you go, ‘Whoah, this is bad.’ And in females, specifically, it’s skyrocketed.”3

  Especially disturbing is her finding among the littlest attempters of suicide. The idea of a twelve-year-old taking their life churns your gut, turns it cold. So the very idea of someone as young as five or six killing themselves defies my conceptualization—even if (the good news) suicide rates among the youngest children are vanishingly small—measured in per-million, as opposed to per–hundred thousand for other age groups. But “it breaks my heart every time I talk about it. We like to think kids at that age are prospering: they’re just starting school, they’re becoming their own individuals.”