Pat Milam has all the befuddled anger of a parent who has buried his child. I can hear the confusion in his voice, like a man losing his grip on what the world is supposed to be like.
"You can't misunderstand a picture of someone literally digging his own grave," he tells me over the phone. "You can't misunderstand a picture of somebody out in a lightning storm begging to die. You can't misunderstand affidavits from people saying that my son told them he's going to kill himself when he gets out."
In late 2011, Pat discovered explosives and a propane tank in his son Matthew's room. Matthew was 24. When Matthew threatened his father, Pat called the police. They took Matthew to Ochsner Medical Center in Louisiana, where he had previously received outpatient care, for inpatient psychiatric evaluation. According to Pat, Matthew, who suffered from bipolar disorder and paranoid schizophrenia, had already attempted suicide twice that year. Matthew's brother had killed himself with a heroin overdose several years before; a family history of suicide is considered a major risk factor for suicidal patients.
Pat submitted documents — the photos and affidavits he mentioned to me over the phone — trying to prove to Ochsner that Matthew needed long-term care. Despite this, Matthew's insurance company only agreed to cover his stay at Ochsner for just over a week. When his coverage was set to run out, Pat says, the hospital negotiated with the insurance company for one extra day, to allow the family time to arrange for outpatient care. After that, according to Pat, Ochsner released Matthew, despite warnings from his friends and family that he was still a danger to himself. Eight days after his discharge, Matthew killed himself with homemade explosives.
Matthew's story holds much personal meaning for me. I was diagnosed with borderline personality disorder (BPD), a serious mental illness, in my early 20s. BPD has an extremely high rate of suicide attempts and completions: An estimated 80 percent of BPD patients attempt suicide, and 10 to 12 percent actually go through with it.
I have attempted suicide three times, although none of the attempts were what I consider to be serious efforts to end my life. Rather, each time I was experiencing excruciating psychological pain and simply wanted it to stop. But when I decided to seek medical help, there appeared to be no system in place that could effectively guide me.
I've come to learn that recovering from a condition like BPD is usually a lonely experience. There was no one to trace a map I could make sense of, so I had to find my own way to sanity. I've spent a decade, as well as a huge financial investment, searching for adequate treatment for my mental illness. My doctor, who doesn't take insurance, has informed me that I've all but recovered, though people like me aren't ever "cured." It's more a question of maintenance, and that's where medication and therapy come in.
At points in my journey, I've needed more serious care, and I was institutionalized three times — in facilities that did not accept any type of health insurance. Fortunately, I'm able to afford the small fortunes each one of them cost. Very few people are lucky enough to have the resources with which to bypass the broken, neglected American mental health care system, one in which hospitals, insurance companies, and some doctors all appear to be playing a troubling role. The dynamic between these three elements of mental health care treatment leaves great fissures in the system, yawning chasms in which people like Matthew Milam are swallowed whole.
Pat believes that inadequate and discriminatory insurance policies for mental health care, along with what he calls negligence on the part of Ochsner Medical Center, meant that his son was abandoned when he needed help most. Matthew "was in a great deal of pain ... he must have asked us for a gun 20, 30 times," says Pat, who has sued Ochsner "It's like not being able to save a drowning person."
I wrote to an Ochsner spokesperson to ask about the case. The reply: "As medical professionals, caring for our patients is our sole focus, and we are sorry for the loss of the Milams' son, Matthew. However, because of ongoing litigation and respect for patient confidentiality, we are unable to comment."
Pat mails me all the documentation from Matthew's medical records, including the photographs he referred to, as well as copies of signed affidavits from family and friends which he sent to Ochsner, begging them not to discharge his son. One picture, of Matthew bent over and sobbing in the front yard during a thunderstorm, makes my throat close like a fist.
Suicides are often portrayed as unexpected, and it's true that in some cases, friends and family fail to realize their loved ones are struggling until it's too late. But for others living with severe mental illness, having a support system and being self-aware enough to seek help isn't always enough. Many factors contribute to a pattern of mentally ill and suicidal patients failed by America's mental health care system. The setup affects millions of people, including patients with milder psychiatric conditions, but it puts those with severe mental illness at extreme risk.
Nearly 90 percent of Americans are now able to access health insurance since the Affordable Care Act went into effect in 2014. But almost half of private psychiatrists don't accept insurance and more states are cutting funding for mental health services, so receiving the right care can be both challenging and expensive.
It seems strange that such a large number of mental health professionals don't accept insurance. According to a 2014 study in the Journal of American Medical Association Psychiatry, low insurance reimbursement rates for psychiatrists are likely a major reason for this.
Psychiatrists are often only reimbursed for medication-management visits, which are typically allotted 10 to 15 minutes of coverage by insurance companies, leading some psychiatrists to feel unfulfilled and uncomfortable with the quality of the care they are able to provide to severely mentally ill patients.
Dr. Jeffrey Lieberman, chair of Columbia University's department of psychiatry, says offering unequal insurance reimbursement rates for psychiatrists is a practice that has evolved over decades.
"As the country became more concerned about the rising health care costs, psychiatrists began not to take insurance because the insurance that was provided either through Medicare or Medicaid or through the inequitable private insurance was not meeting what would be called industry standards," he says.
But he also points out that there is not a financial incentive for doctors to start accepting health insurance, if they want to maintain a lifestyle they've become accustomed to.
"I think psychiatry has been victimized in some ways by the paperwork, the harassment, having to justify the need for treatment," says Lieberman. "To be perfectly honest, though, I think some doctors have put financial needs ahead of patient needs. ... When you're in business, you've got a certain standard of living to maintain and office expenses to meet, and you need a certain revenue stream to support that. If the revenue stream coming from insurance is not moneymaking or doesn't allow you to break even at the very least, then you're not necessarily going to accept it."
Even when a severely mentally ill patient finds a doctor who accepts her insurance, the right treatment might not be covered. Insurance companies are legally required to cover mental heath treatment as thoroughly as they would any other illness or health condition, bound by a set of federal regulations, first passed in 1996, known as parity law. Further clarifications and enhancements to the law were introduced with the ACA in 2014. But the regulations have proven difficult to enforce, and some insurance companies have found ways around these rules.
Colleen Barry, a professor at Johns Hopkins University's School of Public Health, has found in her research that a quarter of the plans being sold on health insurance exchanges set up through the ACA offer benefits that appear to violate federal parity law. According to Barry, many insurance companies exploit loopholes in the law by employing their own doctors to assess requests for mental health coverage, in a policy known as "utilization review." The reviewing doctor decides which treatments should be covered by insurance.
Barry says many companies also require a process known as prior authorization, in which a patient's doctor must personally call the insurance company and request coverage for a specific mental health treatment. The result is that mental health treatment is often scrutinized more intensely than other ailments, and patients are not as able to receive adequate coverage for their care.
"The concern is that there's a spirit of the extension of parity law under Obamacare that is not really being followed," says Barry.
But why have insurers singled out mental health treatment for inferior coverage in the first place? Henry Harbin, former CEO of Magellan Health Services, one of the country's largest behavioral health care insurance companies, says that even when a treatment for a mental health condition does what it's supposed to, it often entails keeping the condition in check, rather than eliminating it entirely.
"A lot of the treatments work for some people," he explains. "More commonly, they work modestly but not fully. People get better, but not well."
Psychiatric hospitals are legally obligated to treat suicidal patients — even if the patient's funding runs dry — for as long as it takes for the patient to stabilize. Private psychiatrists are also prohibited from terminating treatment of suicidal patients without ensuring that a comprehensive aftercare plan is in place, so the patient isn't left spinning in the wind with no one to help her.
The Ochsner doctors who Pat Milam says failed his son Matthew worked at a psychiatric hospital, which is a last resort for most people with mental illness. But when Matthew's insurance company wouldn't cover inpatient treatment, his doctors at Ochsner recommended an outpatient program at a clinic. Outpatient clinics as well as psychiatrists and therapists in private practice are meant to prevent mentally ill patients from deteriorating to the point of needing hospitalization. But some people with mental illness are failed in this setting as well.
Most individuals considering suicide reach out for help before they attempt to take their own lives. Sixty-four percent of people who try to kill themselves see a doctor in the month before their attempt and 38 percent in the week before.
However, it seems that some of these patients and their families don't believe they received adequate care for their conditions. In 2013, 8 percent of psychiatrists were sued for malpractice, and post-suicide lawsuits account for the largest number of malpractice suits against psychiatrists.
While this number doesn't indicate that all the doctors sued were actually negligent, it proves there is very real concern regarding psychiatric treatment of suicidal patients.
But how does one determine whether a doctor has fulfilled his or her responsibility to care for someone considering suicide? There are guidelines in place, but given the nebulous, relative nature of the scenario and the lack of effective treatment for mental illness, no statistics exist to indicate how many doctors have actually failed in their psychiatric duty. For one thing, malpractice lawsuits against private psychiatrists are expensive and notoriously difficult to prosecute. According to Current Psychiatry, clinicians win more than 80 percent of such cases. But anecdotal evidence seems to indicate that some private doctors engage in a practice known as "psychiatric abandonment," in which a psychiatrist terminates treatment of a suicidal patient without providing adequate substitute care.
Many factors contribute to the general lack of zeal among psychiatrists for treating chronically suicidal patients. In addition to the personal grief many doctors experience when a patient kills herself, there is the added worry of being sued in the confusion of sadness and anger that typically follows such an event, even when they did everything they could to effectively treat the deceased person.
But malpractice law exists to prosecute doctors who have failed in their duty to care for their patients, and this standard applies to psychiatry as well. That's what another parent, Mary Williams*, believes happened to her daughter Rhonda, when Rhonda's funding for treatment at Smith Community Mental Health Center, a Florida clinic, dried up.
Rhonda, who was diagnosed with borderline personality disorder and major depressive disorder, was uninsured and in unfortunate financial circumstances, which is common for patients with BPD. One study shows that 45 percent of borderline patients are unemployed. But Rhonda qualified for a limited amount of state funding allocated toward treating mentally ill patients — about $500,000 in total for all the people who qualified. She used this funding to seek treatment at the Smith Community Mental Health Center in Plantation, Florida. The funding lasted for three months; after that, Rhonda was told she could no longer be treated at the facility.
According to her mother, Rhonda told her treating doctor at Smith Community Mental Health Center that she was suicidal and begged the doctor to continue treatment. As with Matthew Milam, there was a family history of suicide. Rhonda's father had killed himself when Rhonda was a child. Mary says that despite repeated warnings from family members, former treatment providers, and Rhonda's therapist, the doctor discharged Rhonda from outpatient services immediately after her funding was up, without providing an aftercare plan.
A week later, on June 25, 2007, Rhonda was found dead. She had drowned herself, having overdosed on psychiatric medication prescribed by the same doctor (The doctor declined to comment due to patient confidentiality agreements). With the help of a pro bono lawyer, Mary filed a complaint against the doctor with the Florida medical board. Although the board didn't find any misconduct on the doctor's part, she also has a lawsuit pending against her for a similar incident, in which the estate of a deceased man alleges that she ignored his repeated efforts to reach out for help, leading to his suicide in 2009.
"There's just a lot wrong here," Mary tells me. She sounds weary, on the verge of tears. "They should have listened. ... They shouldn't have put a price tag on [my daughter's] life."
But there does appear to be a price tag on effective treatment for mental illness, and as I've discovered, it's often a hefty one. When I applied for a new insurance plan after the ACA went into effect in January 2014, my doctor and I went through a long and arduous process to get my stabilizing psychiatric medication covered. I had to switch insurance companies three times as I jumped through a series of bureaucratic hoops, paying $1,200 a month out of pocket for the better part of a year.
I had no choice, because the stakes were high: My last suicide attempt occurred shortly after I tried to go off this medication. I finally found a company that would agree to cover it. But a couple of months ago, my doctor recommended slightly adjusting my dose, which means we'll have to go through the entire process again. When he tried to call in a prior authorization for the updated dose, my insurer said it would only cover 40 pills a month. My new dose requires 60.
It seems to me that all three of my health insurance companies were violating, if not parity law itself, certainly the spirit of the legal regulations in place to ensure equal coverage for mental illness. Colleen Barry of John Hopkins says her research indicates that this is a common tactic for insurance providers.
"Your desire for mental health treatment is a marker that you might be an expensive health plan enrollee, so the best thing the health plan could do is to convince you that you want to join a different plan," Barry explains to me.
"You did that. You got sick of fighting and switched to another plan. That's potentially a win for the insurance companies because ... we know that mental health conditions are chronic. The fact that you're using medication now means that you'll use medication in the future. The whole point of parity law is to even the playing field, requiring all health insurers to provide adequate mental health benefits, so it can't be a way to ‘cherry pick,' which is to create incentives for the healthiest people to join plans and different incentives for people who are actually using health care services to join the plan. The more people who are healthy that join, the more money they'll make. The sicker people are who join, the more money they'll lose."
But finding recourse when coverage falls short is difficult for someone in perfect mental health, let alone someone struggling with mental illness. In the case of misconduct by health insurance companies, parity law violations can be handled by any one of three different agencies, depending on whether the insurance policy in question is a federal program, administered by an employer, or purchased privately. State insurance departments also conduct their own reviews of complaints.
According to Richard Frank, assistant secretary for planning and evaluation for the Department of Health and Human Services, parity law has been effective at leveling the playing field in "quantifiable" coverage — for example, insurance companies can't get away with charging higher premiums for people with mental illness. But he says some of the regulations are so new that there hasn't been time to figure out where the holes are, let alone fix them.
Clare Krusing, director of communications at America's Health Insurance Plans, the national trade association that represents and lobbies on behalf of health insurance companies, says insurers are doing everything they can to make sure they abide by parity law. But she says doctors can order unnecessary and ineffective mental health treatments, which is why companies institute regulations such as prior authorization.
"One of the challenges patients face when they're seeking mental health care treatment ... is receiving the best care for their particular condition that is backed up by the medical evidence around safety and effectiveness," says Krusing. "So there are important protections and safety checks in place to avoid the serious adverse events that we've seen across the board, when patients are prescribed treatments that either don't work for them or run counter to the type of care that would be beneficial for their health."
It seems as though at the highest levels, insurance companies are doubtful about the effectiveness of mental health treatments, and doctors aren't always capable or sometimes willing to treat people with chronic mental illness. Given the nature of these conditions, mentally ill patients aren't always able to advocate for themselves. So what can people like me do when we become too sick to trust their own thoughts? If we look out in desperation and see only closed doors, what's to stop us from thinking there's no place for us in this world?
Though I've come a long way in my recovery, I'm often reminded how isolating this process can be. For example, I still haven't decided whether to pursue the new dose and find another insurer. There's a chance that changing my dose would help keep the edges of my thoughts from fraying with anxious self-loathing, the way they still do sometimes. Following my doctor's recommendation might tighten my grip on the life I've managed to salvage. But thinking about the expense, and the process of getting my medication covered, makes me tired.
Sulome Anderson is a journalist, author, and contributing writer with New York magazine, based between Beirut, Lebanon, and New York City. Her upcoming book, The Hostage's Daughter, is scheduled for publication with HarperCollins in fall 2016. Find her on Twitter @SulomeAnderson.
*Names have been changed.
If you are considering suicide, please seek help through the national suicide prevention lifeline at 1-800-273-8255.