Psychiatry has a Futility Problem
The harms of ineffective treatments
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I once rode a hospital elevator with an oncologist who told me the following joke: “Do you know why they put people in coffins when they die? Because otherwise oncologists would keep recommending treatment.”
The elevator ride took place after a particularly tough family meeting the oncologist and I attended. After multiple rounds of chemotherapy, the patient’s cancer wasn’t shrinking, so the patient was trying to decide whether to continue with aggressive treatment—maybe one more round of chemo would help?—or switch to comfort care. This oncologist was clear with the patient that chemo was available, but almost certainly wouldn’t work and would have the usual downsides the patient had already experienced. He was also self-aware enough to make the joke to me about how most oncologists would have pushed for more chemo.
Even when aggressive treatment is clearly futile, physicians are often reluctant to admit that a cure is out of reach, which they see as ‘giving up hope’. This is understandable. It’s hard to tell someone there’s nothing more to do, and it’s hard to devote your life to saving lives and then be unable to save some of them. This theme of medicine is everywhere, from the TV series House to the recent Rabiolab episode with Toronto physician Blair Bigham.
Increasingly, psychiatry is being asked to confront its limits. Canada’s recent postponement of medical assistance in dying when a mental disorder is the sole underlying condition is part of it, but it goes further. Two recent articles show the current state of affairs.
Anorexia and Futility
Last month, Katie Engelhart published an excellent article in The New York Times Magazine called “Should Patients Be Allowed to Die From Anorexia?”, which focuses on a forty-two-year-old woman named Naomi who has had anorexia for over thirty years. Despite dozens of treatment attempts, including multiple months-long inpatient stays, Naomi only ever got well enough to gain a bit of weight, leave the hospital, then repeat the cycle. This is the case for fifteen to twenty percent of people with anorexia.
As Engelhart’s article describes, the evidence for many interventions for anorexia is weak. There are no well-designed studies showing that residential eating-disorder programs, which are the most common approach, work better than other options, for instance. The article profiles Dr. Joel Yager, who argues that psychiatry uses treatments that aren’t evidence-based:
And there was certainly no evidence at all that a fourth, or fifth or 10th attempt at the same kind of program was likely to be helpful, especially if the patient didn’t want it. The same was true of involuntary care. There was some evidence that forced treatment could be life-sustaining in the short term, but its long-term effects were more uncertain. In his own academic articles, Yager wrote about the “willfully blind Pollyannish therapeutic attitudes” of psychiatrists throughout history, and of their “excessive hyperinterventionism.”
This is partly because psychiatry is less developed than other specialties. It was only in the middle of the twentieth century that effective antidepressant and antipsychotic drugs were discovered, and new drugs and therapies are available. Psychiatry has this in common with oncology, for which there’s often a new drug or treatment regime available.
After all, in psychiatry, there were always more drugs and drug combinations to try. More behavioral interventions and therapeutic modalities to employ. More clinicians who believed that they alone had the special therapeutic touch. It seemed to Yager that despite what every honest psychiatrist should know, psychiatrists were never really allowed to acknowledge futility—and so never allowed to stop treating. In turn, their patients were never “allowed” to say no. Never allowed to decline care. Certainly never allowed to die.
Treatment resistance isn’t unique to anorexia. One study in Nature estimates that twenty to sixty percent of patients with a psychiatric disorder experience a treatment-resistant form. Although definitions of treatment resistance differ, the authors of the Nature article find that most guidelines identify the same core criteria: the correct diagnosis has been made, adequate treatment has been given, but there hasn’t been an adequate response. In some cases, people still get better eventually, and new drugs focused on treatment-resistant forms of conditions are in development. But in other cases, such as Naomi's, the person undergoes years of treatment, sometimes against her will, and never improves.
Treatment of this sort is far from low-risk. For someone with anorexia, being fed is extremely distressing. Engelhart describes how Naomi would sometimes tamper with her IV lines “because it was too awful to watch those plastic bags of liquid calories empty into her body.” When she tried to leave the hospital, she was involuntarily committed, which was also harmful: “I was completely disrespected. I was tricked.” The financial costs are also significant: In the United States, most of the large residential treatment programs are owned by private companies that charge huge amounts of money for their programs.
There are cases where holding someone against her will is justified. There are also cases where using an unproven therapy can be justified, if there’s a reasonable chance of the expected benefits outweighing the harms, and if the patient has decision-making capacity and consents. (If the patient is incapable of consenting, the best-interest standard applies. Outside psychiatry, it’s rarely considered in the patient’s best interest to keep forcing ineffective treatments that cause suffering.)
Many people, including physicians, misunderstand how mental illness affects decision-making capacity. One study of seventy women with severe anorexia nervosa found that two-thirds of patients had full capacity according to the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), which is the gold standard tool. I’ve written about capacity and mental illness here and, while there’s a lot of noise, all studies find that some involuntary psychiatric patients have capacity.
Psychiatrists Keep Saying the Quiet Part Out Loud
The second article on futility comes from a team of psychiatrists and bioethicists, including some of my former colleagues from Baylor College of Medicine, who published a study in the American Journal of Bioethics Neuroscience called “What Do Psychiatrists Think About Caring for Patients Who Have Extremely Treatment-Refractory Illness?”
The study polled 212 U.S. psychiatrists, who each received one of two case studies of a patient with treatment-refractory (i.e., resistant) illness. And I mean extremely resistant. The hypothetical patients receive every single possible intervention multiple times. Here is part of the description of Ms. A, a thirty-eight-year-old woman “with a history of borderline personality disorder, major depressive disorder, and post-traumatic stress disorder”. It’s worth quoting at length so you can see how much treatment this hypothetical person has gone through without improving.
Ms. A has had extensive treatment. She has been admitted 23 times to different psychiatric wards, and four times in the last four months. She was admitted twice for several months to the state hospital. She has completed three separate DBT groups, as well as a residential program focused on DBT. She has had over twelve weeks of ACT and has also done several months of EMDR. She does not currently have a therapist, having terminated with her last provider. She has no history of substance use. She has no identifiable medical illnesses. She is unemployed and on disability. She has had numerous trials of pharmacotherapy including five SSRIs, two SNRIs, bupropion, mirtazapine, five different antipsychotic agents, lithium, lamotrigine, oxcarbazepine, propranolol, naltrexone, and prazosin. She is currently taking aripiprazole and lithium with no apparent improvement in mood or self-injury. Her mother reports that she is generally adherent to her prescribed medications and her lithium blood levels are therapeutic. She has previously received rTMS, twelve sessions of ECT, both focused on ameliorating depressive symptoms that seem to be correlated with her self-injury. A trial of six ketamine infusions for mood and suicidal ideation had no effect.
The other case, involving a woman with major depressive disorder, is similarly thorough. The surveyed psychiatrists were asked to rate the perceived helpfulness of four types of treatment (hospital admission, medication, etc.), how helpful they thought the treatment would be, and the likelihood of recommending each form of treatment. Finally, participants were asked, “Do you ever have patients for whom it would be reasonable to stop most, if not all, treatment?”
Most participants (71.5 percent) answered yes to the last question, showing that psychiatrists believe in futility, at least in principle. What’s shocking is that many of them also said they would recommend treatments they believed would be unhelpful. Here’s the summary:
For both cases on average, 39.0% said they would admit the patient even though it would be unhelpful, 44.8% said they would provide additional psychotherapy even though it would be unhelpful, 41.3% said they would provide additional medication changes even though they would be unhelpful, and 12.2% they would provide additional neurostimulation even though it would be unhelpful.
Each percentage is in the minority, but, for all but neurostimulation, not by much. And remember that this is for a patient who has already tried everything multiple times.
The study’s authors are clear that the ethical implications of these findings are troubling. Recommending treatment one believes to be unhelpful is exposing patients to risk without expected benefits, which violates basic ethical norms. Next, continuing treatment for patients who are unlikely to benefit means using limited healthcare resources inefficiently. Finally, if psychiatrists are unable to acknowledge futile cases, as Yager, the physician in Engelhart’s story, believes, this not only exposes patients to harm, but also undermines patient autonomy and violates principles of truth telling and trustworthiness.
The Secret is to Know When to Stop
There’s a common belief that people will get better once they get access to care. Recently, as Canada decided to postpone MAID for people whose only underlying condition is a mental disorder, this has been directed at mental health. It’s also true of palliative care. “People wouldn’t want MAID if they had access to palliative care,” goes the argument.
Improving access to mental health care and palliative care are both worthwhile goals, but it’s a myth that people won’t want to die, or won’t be justified in wanting to die, once those access improves. According to a recent study, even when patients receive the best palliative care possible, “at least half of patients may still experience moderate or severe physical or psychological suffering in the final days of life.” Access is only part of the problem. The other part is that palliative care and psychiatry, like all forms of medicine, have limits. The longer psychiatry fails to confront this, the more people will suffer.
Quick Hits
I didn’t do any quick hits last week, so here are a bunch from my list.
“Gene Therapy Allows an 11-Year-Old to Hear for the First Time”. The boy is pretty happy about it: “There’s no sound I don’t like,” Aissam said, with the help of interpreters during an interview last week. “They’re all good.”
This was one of the good pieces about Canada’s postponement of MAID for mental illness: “Ottawa Should Ask the Supreme Court about MAID for Canadians with Mental Illness”.
A politically diverse range of media is increasingly covering how children who think they’re trans interact with the healthcare system. Here’s an opinion article from the Times.
A former Dutch prime minister and his wife died by euthanasia together.
In unsurprising news, Alberta’s abandonment of evidence-based interventions for non-prescribed opioid use is going badly.
Here’s the kind of story ethicists wait their whole careers for.