Wednesday, November 4, 2015

What if . . .?

A short article in the January, 2015, issue of The Atlantic, caught my attention. Entitled “Should the U. S. Bring Back Psychiatric Asylums?” the piece cited an article in The Journal of The American Medical Association, that made the case for doing just that.
The article struck a tender nerve in me. When Parrish was alive, his father and I often lamented the dearth of long term facilities for patients like him. He couldn’t manage his own life, and all the love and support in the world didn’t make his life easier for him—or for us. He needed to be in a sheltered environment where he could be monitored and medicated and treated humanely. Originally, the word “asylum” was associated with shelter and safety, a refuge of compassionate care for the chronically psychotic. 
Historically, state run asylums were reportedly places of less than optimal care. There were instances of neglect, brutal treatment, and dehumanization of patients. I know of what I speak.
In 1968, in nursing school, I did a psychiatric rotation in a mental hospital in Florida and was so traumatized by it, I blocked out most of the memories. In a recent visit with a wonderful friend who was in my class, she reminded me of the naked and caged patients who were systematically herded into a group shower and washed down with a garden hose. I remember assisting with electroconvulsive therapy (ECT or shock treatments) that was administered without anesthesia or even sedation. The patients were treated like animals, some of them kept naked because they tried to eat their clothes. 
I remember vividly the conversations with other students about the abject cruelty of some of the staff, not to mention the draconian treatments being administered by medical doctors. We all came away with a sense that such places shouldn’t exist. There had been those who agreed with us for quite some time.
Just a few months before he died, President Kennedy signed into law the Community Mental Health Act of 1963. The act earmarked $150M (a little over a billion dollars in today’s economy) for the establishment of community based mental health facilities. The civil rights movement of that era, along with the newly enacted law and the withholding of federal Medicaid funds for long term psychiatric facilities, began the wholesale dismissal of severely mentally ill patients into the general population. 
The outpatient world was not ready for the influx of chronically psychotic patients into its care. The shiny new community based treatment centers were not yet in place. Many patients were admitted to nursing homes and hospitals where they received intermittent and inadequate care that was much more expensive than inpatient care. Many become homeless and unmedicated, overwhelming halfway houses and homeless shelters. Hospital emergency rooms were overrun with patients waiting for psychiatric beds. Violent behavior among the sickest of the sick increased, and incarceration of psychotic patients became the norm. 
50 years after the passage if The Community Health Act of 1963, there are still not enough community based centers to facilitate the treatment of those who need them. In the state of Georgia, there are 20 facilities scattered over the state, which has 159 counties.  
According to The National Alliance on Mental Illness (NAMI) web page, “Approximately 26 percent of homeless adults staying in shelters live with serious metal illness and an estimated 46 percent live with severe mental illness and/or substance use disorders.” Furthermore, “Approximately 20 percent of state prisoners and 21 percent of local jail prisoners have a ‘recent history’ of a mental health condition.”
Again, according to NAMI, “The lack of safe and affordable housing is one of the most powerful barriers to recovery. When this basic need isn’t met, people cycle in and out of homelessness, jails, shelters and hospitals.” 
Many severely mentally ill persons, as did Parrish, rely on Social Security Income (SSI), which averages only 18% of the median income in the United States. Many—in spite of medication—are incapable of holding down a regular job because of their mood swings. When housing is available, the rent is adjusted to the patient’s income, but it is difficult to obtain. When patients are incarcerated or hospitalized, SSI is suspended, and when they are released, it can take months for the flow of money to begin again. Without resources, they are again forced into homelessness and many are cycled back through the criminal justice system.
Parrish was not only schizoaffective, he was addicted to benzodiazepines and alcohol, a syndrome not uncommon in chronically psychotic patients, who even when taking their drugs as prescribed, self-medicate their symptoms. He was intermittently homeless for the last several years of his life.
While homeless and living on the beach in Miami, in 2009, Parrish incarcerated on the notorious 9th Floor of the Miami-Dade County Jail, its “primary psychiatric unit.” In his book, Crazy: A Father’s Search Through America’s Health Care Madness,” Pete Early describes it in vivid detail. Because of his psychiatric disability, Parrish was imprisoned there as the result of stealing a 12-pack of beer from a convenience store. Conditions there were not unlike those in the asylums that were shut down decades ago. 
In his book, Early reports, “The first six ‘suicide’ cells each contained a combination sink and stainless-steel commode. They also held a bright-blue hard-plastic bed that was built so prisoners could be strapped spread-eagle onto it. There were no sheets in these cells, no blankets, no pillows, no other creature comforts.”
Mercifully, Parrish was turned around and dismissed within three days of his jailing. By a stroke of luck, he met with a counselor who, seeing in him something more than his mental disability, networked him into an outpatient program. He was by far the exception to the rule. 
When Parrish returned to Georgia in 2012, we quickly learned gaining access to the community based behavioral health centers is difficult. Months-long waiting periods for assessment and treatment as well as a paucity of inpatient stabilization beds are the norm. In the absence of funds for private care, the hospital emergency room became his de facto psychiatric care provider.
His life continued to be driven by his schizoaffective disorder and attendant alcoholism and drug addiction, and in January, 2014, he attempted suicide for the second time in less than a year. He was revived on a ventilator, and when he had been in the hospital for five days, the doctors at the hospital refused to send him home with me, insisting instead on transferring him to Savannah Regional Hospital, the community based facility which incredibly serves 24 counties. I was granted full guardianship of Parrish in April of 2013, but no one honored it, not even the doctors charged with his care. That doctor broke the law by not allowing me to make Parrish’s health care decisions, and I was powerless to do anything about it. Having heard Parrish’s descriptions of his treatment in the very facility he was being discharged to, his father and I would happily have admitted him to a private facility if given the option—damn the cost of over $800.00 a night.
Parrish was carried away by a sheriff’s deputy in handcuffs and ankle chains, like a prisoner, not a patient. He was in Savannah for a week, and when I picked him up, he had no discharge plan, but he did have a prescription for the very medication he took in his suicide attempt. He also had one for enough Valium to kill himself. Not stabilized on his medication, he ended up spending a month in the crisis stabilization unit of Gateway, the local community based behavioral health facility. 
After that stint in the stabilization unit, I made the decision, with the full support of his father, to bring Parrish home with me and find a way to make it work. I was terrified he would succeed in killing himself, or worse, be killed by someone else.
After his dismissal, Parrish was admitted to an outpatient program called ACT (Active Community Treatment). He was assigned a team composed of a psychiatrist, social worker, peer counselor, nurse and addiction counselor, was somewhat effective. The psychiatrist saw Parrish twice a month for a while, trying different medications. The team members were a mixed bag. His addiction therapist was the strongest member of the team, and she often saw him more than the required once a week. His social worker wouldn’t come in the house because she was afraid of my small dog. The nurse came in fits and starts, and Parrish saw his therapist once a month for a few minutes. That level of care may be sufficient to keep some patients at home, but it wasn’t for Parrish. He needed long term inpatient treatment. We tried, we really did, but here were frequent visits to the emergency room for symptoms of severe mania. 
There is an unmistakable pattern in this story. Not only was Parrish marginalized by the “system,” I was also. I was systematically denied my rights and responsibilities as Parrish's guardian. Doctors and law enforcement personnel routinely broke the law when they refused to allow me to speak for him. Once, I was prevented from being in the room with him by a police officer in the emergency department.
He was hospitalized several times during 2014, mostly in a private facility, but his final admission, after an extended period of extreme mania and another encounter with the police (who refused to even glance at my guardianship papers), was to the Gateway crisis stabilization center on January 7, 2015. I will forever regret that decision. 
He was heavily sedated, which is not uncommon in the stabilization of mania. The hope is to sedate the patient and gradually decrease the medication over a few days or weeks, hoping he will cycle out of the manic phase. I believe the staff at Gateway, charged with his care, failed to monitor Parrish’s condition closely enough. Late in the morning of January 7, he was discovered to be in respiratory distress and taken by ambulance to the local emergency room. He died less than 12 hours later, connected to a respirator.
According to the autopsy report, Parrish died of pulmonary edema secondary to a multi-drug overdose. Pulmonary edema is the build-up of fluid in the spaces outside the blood vessels of the lungs. It is almost always caused by a heart problem, but Parrish’s heart was healthy. Autopsy revealed that both of his lungs were so congested with fluid, they each weighed twice as much as normal.
I am not equating Parrish’s treatment with the horrors I witnessed as a young woman, but it is clear to me he wasn’t monitored as closely as he needed to be. His condition might have been recognized earlier if anyone had routinely listened to his chest. Gateway certainly failed Parrish and everyone who loved him. But it wasn’t only Gateway who failed him. There is a sound argument for having in place facilities for the long term, even permanent, care for the severely mentally ill who are not functional. 
Yes, I am advocating for bringing back the asylum. There are those who cannot, even when they try as hard as they can, manage their own lives and whose loved ones are unable to cope. Ours was a classic example of such a calamitous and intractable situation. I don’t think I’ve ever felt as powerless as I did during the last year of my son’s life.
    What if, in 1963, some of the monies earmarked for community based centers were instead used to close down the worst of the asylums and clean up those remaining? As Parrish got sicker and sicker, what if his father and I had the opportunity to provide him access to a place of sanctuary, refuge and compassionate care? I certainly don't support the wholesale institutionalization of the mentally ill. In today’s world of better medications and therapies, it’s simply not needed for most patients. But I believe Parrish would have benefited from long term, and not necessarily permanent, inpatient care. I believe it would have saved his life.

Copyright 2015 cj Schlottman

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