This story originally appeared in our sister publication Flying Kite Media.
Earlier this year, the Journal of the American Medical Association (JAMA) released a short paper by a group of ethicists at the University of Pennsylvania. Dominic Sisti, director of the Scattergood Program for Applied Ethics of Behavioral Health Care, an enterprise housed at Penn, co-authored this provocative piece entitled “Improving Long-term Psychiatric Care: Bring Back the Asylum.”
The paper generated a groundswell of conversation, from New York Times editorials to a harsh critique in the Philadelphia Inquirer. Many writers across the blogosphere had a visceral reaction to the word “asylum.” Others argued for a more measured reading of the call for increased options for the severely mentally ill.
Flying Kite caught up with Sisti to talk about the firestorm, and how he and his team reached their conclusions.
How did you decide to address this issue?
Over the course of a couple years, we were discussing the problem of mentally ill people in prisons. We were going back and forth on what is ethically appropriate for this population, and prison certainly doesn't seem to be the answer. [We thought we could] make the case that in-patient or psychiatric hospitalization would be actually cheaper than prison, but after we ran the numbers, that doesn't seem to be the case. The economics of mental health care really surprised us.
It became clear to us that this was less an economics issue and more of an ethical issue.
There is an appropriate setting for people with serious mental illness, and prison is not that setting. We should revisit the idea of psychiatric hospitals or even recovery campuses that are modern, safe, humane, dignified settings for individuals with severe mental illness who can't flourish in the community. That was really the impetus for the paper.
Why is the cost so high?
There are any number of reasons why the cost of in-patient health care is so high, from the cost of medication and intensive psychiatric care, to just the basic overhead of a hospital.
There are so many variables. A night in a top teaching hospital is a couple thousand bucks, at least, and that's without any care. The other problem is that pricing in health care is not very transparent. Physicians, nurses, patients, family members — no one really knows how much things cost when they're getting them, so it's really tough to give you a simple answer on why it's so expensive.
There's a great network of managed community care programs, especially here in Philadelphia, but despite that there are going to be people who need a higher level of structure, temporarily perhaps.
What are the biggest misconceptions about your argument?
The argument we make doesn't advocate for hospitalization in perpetuity. It's not about locking people away. It's about providing people a safe, structured environment to reclaim their lives and begin their recovery journey. There have been a lot of objections to our paper based on things we didn't even say. No one is advocating for hospitalization forever for people or for a return to Willowbrook [an infamous psychiatric hospital in New York City]. If a person can live in the community, then they shouldn't be in a hospital.
Another objection we've been hearing is, “Your proposal violates Olmstead” [which mandates that people with disabilities, mental or physical, should live in the most integrated setting according to their needs]. Our argument doesn't reject that at all. And in fact, if you read the case, particularly Justice Ginsberg's opinion for the majority, she says that this case ought not be interpreted as a reason to deinstitutionalize everyone.
And Justice Kennedy goes further and says it would be a tragedy to interpret this case as saying that people who need institutionalization should be moved out.
The justices are saying, look, if a person needs structure, they deserve it, and if they don't, then they deserve to live a life in the community. The majority of people with serious mental illness can survive in the community, but there is a small population that can't.
Did you anticipate such a vociferous reaction to the article?
I'll be honest, I didn't really foresee the backlash. From my perspective, I thought reappropriation of the term “asylum” would be provocative but not negatively provocative. Part of the problem was that I don't think people actually read the article to see how we actually define the term. We [lay out] the original meaning of the term: sanctuary, safety. That's where the plot sort of twists.
The subtitle of the paper — “Bring Back the Asylum” — I think freaked people out, but if you read the actual paper, it's not that radical.
In the old days, you probably would have had to be a subscriber to JAMA or in the medical community to hear about this paper. How did the internet magnify the reaction?
One thing we did was to ask JAMA to make the article open-access. They were gracious enough to do that for two weeks, so any links to the paper would open the actual paper. It's a two-page paper; it's not that long. So, people just have to take 20 minutes — not even — and read the thing.
[The reaction] has also been really positive. I've gotten dozens of emails from people who thought it was a really great piece. They praised us for the audacity or courage to say what needed to be said.
I got a hard-copy letter from a judge in support; I've gotten dozens of emails from clinicians. I got a bunch of emails from parents who said, 'This is really important. Thanks for saying it.”
The New York Times ran an op-ed that directly cited our piece.
There has been a lot of conversation around it, and that's a good thing. The reality of our criminal justice system and mass incarceration of people with serious mental illness, that's what really disturbs us.
I think people have negative associations with the words “asylum” and “institutionalization.” Those often stem from pop culture depictions — the One Flew Over the Cuckoo's Nest problem. Does that make it tougher to make your case?
We're talking about something humane and evidence-based and medically appropriate. I don't think people can heal and recover in [prison], a setting that's design to basically punish. Prisons are not safe places. They are violent, trauma-inducing places. If we're going to advocate for recovery, then we need to have a place for people to spend time getting their feet back on the ground so that they can engage in recovery.
A lot of times people who are in prison who have mental illness, are in prison because of the mental illness. They have acted in a way that was caused by the mental illness, so we've basically criminalized mental illness. And that to me is really disturbing.
So, you're asking, how can we divert people out of the prison system into a better system of care?
There are mechanisms. There are mental health diversion courts. We have a very good one here in Philadelphia. But the problem is there's often nowhere to send a person that needs to be hospitalized or housed within a reasonable amount of time. The waiting lists for forensic psychiatric beds can often be six months to a year long, so these people end up in jail.
What is the role of bioethics and the ScattergoodEthics Program in particular in this conversation?
I think that as a professional bioethicist, we really have an obligation to speak out when we see things that we find ethically disturbing. We do that often in the academic literature — and JAMA is a prestigious medical journal — but we do it in the public arena as well.
One of the key differences between bioethics and, for example, philosophy or its other allied fields, is that we are out here to have an impact on policy and to speak publicly about issues — to try and get out of the ivory tower as best we can. It can be kind of daunting to sort of wade into controversial topics, but it's part of the job.
This content was created in partnership with the Thomas Scattergood Behavioral Health Foundation, an organization that seeks to create opportunities for productive dialogue and learning within the behavioral health field.