This week a commentary, written by members of the University of Pennsylvania Department of Medical Ethics and Health Policy and titled “Improving Long-term Psychiatric Care: Bring Back the Asylum,” was published in JAMA Online. The senior author, Ezekiel Emanuel is former Special Advisor for Health Policy in the Obama administration and brother of Rahm, Mayor of Chicago and Obama’s former Chief of Staff. This commentary with its provocative title published in a high impact journal by a well connected physician is sure to garner considerable attention and influence.
As the title suggests, the authors recommend a return to asylum care, albeit not as a replacement for but as an addition to improved community services and only for those who have “severe and treatment-resistant psychotic disorders, who are too unstable or unsafe for community based treatment.”
The authors seem to accept the notion of transinstitutionalization (TI) which suggests that people who in another generation would have lived in state hospitals are now incarcerated in jails and prisons. This notion arose from two sets of statistics. The first is that as rates of psychiatric hospitalization declined rates of incarceration increased with the total in 2000 being about the same as it was in 1960. It gives the appearance that we just transferred people from one setting to another.
The other statistic referenced is the high rate of mental illness among those who are incarcerated. The JAMA authors conclude that we can not escape a certain level of institutional care. They are ethicists who argue that it is more humane to place those with mental illness in psychiatric hospitals than jails. Hence the call for asylums.
I have never been comfortable with this hypothesis because it did not comport with my experience. Although I knew that many in our state prisons were prescribed psychiatric drugs, their reasons for taking these drugs were not the same as those who were in our state hospital. The conditions they had fell more into the categories of substance abuse and dysphoria. Whereas the problems of those in our state hospital fell more into the category of psychosis. And while in the early 2000’s Seroquel was the most expensive cost for our state prison pharmacy, it was not by and large being used to treat psychosis; it was mostly prescribed as an alternative to benzodiazepines to treat insomnia and anxiety. At the time, this new (and highly promoted drug) was considered to be a safer alternative to the addictive benzos.
I wondered whether my experience generalized to our nation’s larger states and cities so it was with interest that I read the excellent series of posts by the blogger 1 Boring Old Man (here, here, here and here). Whereas in an earlier post he seemed to accept the notion of TI, he did some research which confirmed my impressions: it is simplistic to assume from the rates of institutionalization that prisons and jails have replaced state psychiatric hospitalizations. He cites several studies, including a comprehensive report by Seth J. Prins who researched the incidence of mental illness in prisons and jails. Prins found that much of the data are weak and based on self report but his conclusions supported my general observations.
It is too bad that Emanuel and colleagues did not look at this work. It appears that the authors of the JAMA commentary were influenced by the work of the Treatment Advocacy Center. Their first referenced article is by E. Fuller Torrey and Jeffrey Geller. The authors also give a nod to the hospital that Geller has recently helped to open in Massachusetts, the 320 bed Worcester Recovery Center and Hospital.
It is tempting to stop here. But I would not be honest if I did that. For I am living through a transition in Vermont and I see both sides of a certain dilemma. The authors write, “Even well-designed community-based programs are often inadequate for a segment of patients who have been deinstitutionalized.” While I am not sure they are right, I am also not sure they are wrong.
Three years ago, Hurricane Irene closed Vermont’s 50 bed state hospital in one eventful night. The hospital had been struggling for awhile. It lost its Medicaid certification in 2002 and for the next 9 years there was debate over what do. Many advocates claimed we did not need a state hospital while those on the other side argued we could not survive without one. There was no resolution until the legislative session following the flood when the discussion was forced into hyper drive. The Governor initially proposed a 16 bed replacement hospital while opponents argued for a full replacement or even a new larger hospital. As the authors of the Asylum paper note, the push for smaller hospitals comes from several quarters: “Progressive reformers, consumers, civil libertarians, and fiscal conservatives all advocated for a similar goal – the closure of publicly funded psychiatric institutions.” Vermont has no shortage of progressive reformers and the lure of reducing state costs appeals to both sides of the aisle. Due to the way the Federal government funds state budgets, a smaller hospital would bring in substantially greater matching funds for community programs. The hope was that these moneys would enhance our community system of care thus allowing for a smaller state hospital. The legislature ultimately approved a new 25 bed hospital and plans were made to develop enhanced community services.
The ensuing process has been simultaneously exhilarating, exhausting, and,at times, demoralizing. It took a long time to get programs up and running and during this time we had more people than ever before stuck in emergency rooms waiting for hospital beds to become available. This has stretched the limits and patience of our emergency room staff. However, we have also created some wonderful new programs. I now work with a peer crisis team who have taught me more than I could ever have gleaned from a book or paper about the power of peers to help their fellows in crisis. Just their presence in our agency has done more to promote the concept of recovery than any talk or lecture.
But there have been some unexpected and somewhat ironic consequences.
Vermont has fairly strict laws governing the circumstances under which people can be forced to take psychiatric drugs. It is not uncommon for people to be in a hospital for months while their cases are litigated. In years past, those who sought to change the law found their efforts thwarted by advocates with opposing views. When we had a state hospital those individuals who refused drugs were treated there but now they were held in community hospitals. This brought the attention of a powerful force – the community hospital system -to the debate. For the first time in over a decade, changes in the law were made to speed up the process in which people held in hospitals could be forced onto psychoactive drugs. So an effort to increase personal autonomy by reducing access to state hospital beds, has also led to a more rapid legal process for giving a person drugs against his will.
During this same period of time, I have increased my own resolve to try to limit exposure to neuroleptic drugs. Whether you think it is a recurrence of some underlying condition or a withdrawal phenomenon, reducing the dose of neuroleptic may still land a person back in a hospital. When there are few hospital beds, there is more pressure to discharge people as quickly as possible. Avoiding or minimizing exposure to psychoactive drugs involves going slowly – waiting before starting them and increasing the dose gradually. Those principles – caution with drugs vs. rapid discharge – can both be viewed as promoting personal liberty and autonomy but they can also be at odds.
In addition, if a unit has a higher density of highly agitated patients – another consequence of reducing beds – doctors are not comfortable waiting or going slowly with drugs. It does not feel safe. In an attempt to reduce the risk of long term exposure to drugs, I am increasing the risk of hospitalization where a person may end up on a higher dose than when we started. In an attempt to reduce the number of people in our hospitals, we have created units where there is a high density of more volatile and agitated individuals.
But there are ironies that go in other directions. In the Asylum article, they suggest an increase use of “assisted treatment in the community” a euphemism for forcing people to take drugs in community settings. Although there seems to be increased Federal interest in this, there is less enthusiasm in Vermont where when someone does not follow an outpatient commitment order the only recourse is to put him in a hospital. When there are few hospital beds, there is little enthusiasm to pursue this.
I have learned that I do not have an answer. I do not think we fully understand what is happening in Vermont in the sense that many programs are new and this complex system is still adjusting.
I am sympathetic to the concerns and fears of my colleagues who work in the inpatient setting and are struggling with volatile wards. I understand the pressures they are under. And to be clear, I am also sympathetic to the concerns of people I know who are admitted to these units and are sometimes frightened by the behavior of the other patients. The incidence of assaults on these units is rising and while I do not think my colleagues discount my talk about being more humanistic in our work, I wonder if they think that I and others do not fully appreciate their predicament. If I am not successful in keeping 100% of the people I see out of hospitals, if I turn to hospital level care when I think someone is not able to be helped safely in the community, it seems hypocritical of me to blame them for the actions they take to keep themselves and others on their units safe.
It increases my resolve to keep people out of hospital and in that way, I seem to be aligned with everyone on all sides of this debate. But then I circle back to the dilemma about reducing the dose of drugs and increasing the risk of the person being hospitalized once again.
There are some who lay the blame back onto psychiatry. If we had done this right in the beginning perhaps people would not be on drugs. Soteria Vermont was one of the programs funded post Irene and many of us wish it well. But as I read the literature, even those approaches do not work for everyone. And, at least from my vantage point, it seems there will still be individuals who decline every option or are too agitated to be in a community setting.
I communicate with many people who take all sorts of positions on this. For better or worse, I seem to be sympathetic to views that are not in alignment with each other. Lately, I find myself coming to the notion of both/and. Maybe I am misunderstanding or misappropriating that concept to this discussion but it seems we need to hold on as much as possible to a humanistic person-centered approach to helping people in extreme distress. At the same time, we can acknowledge that we will sometimes fail. Maybe some of you would not fail but we are a system of people like me and I know I fail. But then I try again. I am thinking of some people who I have worked with for years. Over and over again, I have tried to work in a way that is as close as possible to that person’s wishes and perspectives. For some, this was always easy and for others we have gradually worked it out. We have found a way to work together collaboratively. But in other cases, I have not been able to figure this out.
This started out as a discussion of asylum. Sometimes, I also wish there was a safe place for people to stay while they work through their crisis. We tried to build that into our system in Vermont and those programs are outstanding. But from where I sit, there continue to be people who can not live safely in our communities. Some do not seem to have the wherewithal to care for themselves adequately and others appear to pose a risk to their neighbors. In some cases, they refuse what we have to offer and for others, we do not have adequate resources. The issue of resources is not trivial. For state budgets, these services are a huge part of their expenditures and we can not do it all. Choices need to be made. The public loses interests in our issues and it can appear to them that our needs are unending.
For me, this remains an ongoing, difficult, and unresolved quandary.
