Sunday, October 09, 2016

Is Everyone's Experience of Mental illness the Same?

When I was in high school, one of my friends got mono -- infectious mononeucleosis or kissing disease.  He had a minor sore throat and, because his girlfriend was quite sick with mono, he went to the doctor and was tested.  He tested positive, but unlike his girlfriend, he never got sick and said, "Well, I haven't tried to run a mile, but I'm pretty sure I could."  Still, there is no doubt that both young people had been infected with the virus and one got sick while one did not.

One of the things I learned from the extensive research we did for our forthcoming book,  Committed: The Battle Over Involuntary Psychiatric Care  is that not every has the same experience of the same illness or the same treatments.  Okay, I didn't have to write a book to tell you that, I see it in my office every single day with every single patient.  Why does one person get a severe tremor to Wellbutrin while another with similar symptoms just gets better with no side effects? Why do some people need psychotherapy while others get better from a pill?  Clearly psychotropic medications don't agree with some people, and clearly they don't make everyone with psychiatric illness all better, but there is a contingency of people who feel that since medications were for bad for them, they are bad for everyone.  They are wrong. 

I wrote a blog post about a NY Times op-ed piece last week called "Medicating a Prophet" by Penn psychiatrist Irene Hurford.  She works with young people with psychosis, and I'm going to guess that she seen patients with a range of experiences.  In her op-ed piece, Dr. Hurford makes the point that there are people who like their psychotic symptoms, who gain some comfort from them, and who suffer when they lose their delusions and get smacked with the awful reality of their illness.  She doesn't say that there are not patients who are tormented by their psychosis and I'm going to make the assumption that she has met many paranoid, uncomfortable, and suffering patients -- psychosis is not fun for most people.  Dr. Hurford further makes the point that forced care can be traumatic-- and, as we write in Committed,  it can be for some people, even if it is appreciated by others.  I read from her article not that psychosis never leads to violence, but that rare, extreme acts of violence are rate and extreme and shouldn't be what sets public policy.  She is not the only psychiatrist I know of who is not gung-ho on making forced care easy policy, and I know several forensic psychiatrists who work with the most violent of patients on a daily basis, and still don't see involuntary treatment as the way to prevent these acts.

DJ Jaffe has an article over on Policy Madness in response to Hurford's NYTimes article.  He writes in "Policy Madness: Serious Mental Illness is Not Enriching:"

The New York Times recently ran an op-ed declaring that being psychotic is “enriching,” and arguing against involuntary treatment of the psychotic. “The assumption that someone else’s reality is invalid can foster distrust; it sends the message that we don’t respect this person’s experience of his or her own life,” wrote Irene Hurford, an assistant professor of psychiatry at the University of Pennsylvania. This romantic, Pollyannaish, and false view of psychosis is rampant in the mental-health system, regularly parroted by the media, and dangerous to both patients and public.

Jaffe goes on to talk about people with psychosis who have killed, and how assisted outpatient treatment can be live-saving.  He talks about how nurses who treat psychiatric patients have emergency buttons, but those who treat psoriasis don't.  Well, there are several cases, at Harvard and at Johns Hopkins, where surgeons have been shot by disgruntled family members.  Maybe everyone needs emergency buttons.  

I want to borrow these articles to make the point that there is no single reality.  Some patients find their psychotic symptoms to be tormenting.  Some may find their private reality to be enriching, especially during a mania.  Some patients with psychiatric disorders are dangerous.  Some people get in cars after they've been drinking or using drugs and are dangerous.  And some people are just angry and dangerous.  Please, let's not assume that the experience or the needs of all people with mental disorders are the same.  And let's not even assume that psychiatrists are the same -- some are quicker to prescribe, and some are quicker to commit patients to hospitals.  Often studies of violence outcome look at acts like slamming doors or shoving someone.  While I have no doubt that psychiatric treatment, especially treatment done with with the doctor on the same team with the patient, saves or at least enriches lives, there is no evidence beyond the anecdotal that forced outpatient care prevents murders, mass murders, or even suicide, or that other, more collaborative methods might be more effective. 

And please, don't even consider reading this and thinking that I believe there aren't situations where the only option is to force a very sick patient to get involuntary care.  I just don't think we should assume all people with psychotic disorders have the same experience.  


George Dawson, MD, DFAPA said...

I think that your argument is flawed in a few ways:

1. You are assuming that despite the variations in psychiatrists that you mention that psychiatrists seem incapable of figuring our that the experience of psychosis is different for everyone. I don't see how this is possible. Even if a psychiatrist is a complete blockhead and incapable of noting the nuances of the thousands of different individuals seen, at some point a decision has to be made based on the commitment laws in the state and some "dangerousness" criteria. There is also the administrative backdrop against which that psychiatrist is practicing and in most settings administrators want that patient discharged ASAP ahead of the DRG constraint. The reality is thousands if not tens of thousands of seriously mentally ill people are discharged every day before there is any involuntary treatment. A large percentage are discharged to the street without any follow up resources or housing because of the current involuntary treatment scenarios. The discharged people are generally a bigger problem because they have no practical way of being engaged in treatment and a large number are disabled.

2. The evidence based argument implies that there could be a randomized study of dangerous people that would pass the scrutiny of a human subjects committee. I can't imagine that happening based on the people who I have assessed. A proxy measure would be people discharged by the courts and what their outcomes would be. In that case, catastrophic outcomes, inability to function, and readmissions could be followed. I am not aware of any such study. Suicide prevention and violence prevention are all short term goals. Without continued engagement in treatment they are less likely to succeed.

3. One of the central assumptions here seems to be that psychiatrists don't know what they are doing. Maybe I am just lucky to work in the rarefied air of Minnesota with competent people, but I don't see people getting committed because they enjoy being psychotic or consider it to be an alternate lifestyle.

Dinah said...

Hmmm, I never meant to imply that psychiatrists don't know what we're doing, just that within the bounds of the law, there are docs who are quicker to commit than others for a wide variety of reasons. I'm not sure I understand what outpatient commitment has to do with the access/homelessness issues you mention: plenty of these patients would pleased to be discharged to housing with a case manager who would help them negotiate getting medications and getting to appointments and most would accept this help on a voluntary basis.

To measure a treatment and say there are fewer incidents of violence where the cutoff is door slamming or shoving someone and extrapolate that to say that involuntary treatment saves lives and prevents mass murders is bit odd to me. And the patients in the involuntary treatment group may have fewer episodes of violence, incarceration, or hospitalization, but it's not zero or anywhere near it. Violent patients are often excluded from AOT studies which is really strange.
Read the book?

I won't speak for Dr. Hurford, but I do think that if you can avoid forced care, you should.

George Dawson, MD, DFAPA said...

"I do think that if you can avoid forced care, you should."

That is the obvious goal.

There are very few psychiatrists who want to endure all of the paperwork, court testimony, second guessing by court personnel and their own administration and in some cases dealing with very dangerous people to the point that they are personally threatened. The path of least resistance is either voluntary treatment or discharging the person on legal criteria. The process is a deterrent (among other things) to any bright, young, medically adept psychiatrist interested in inpatient or consultation liaison work.

In my experience there are few people who want resources when they leave. The so-called "third standard" of commitment is inadequate self care to the point that it endangers one's life. Most of these patients are so impaired they do not recognize the need to treat their diabetes, cancer, hypertension or heart disease. They do not want to be in any setting where that is addressed. When they leave - they are quite happy to go back to the street and not take insulin. The courts are happy until they return in a diabetic coma and if they survive go back into court again. The managed care company is happy either way because they can write off the admission as "not medically necessary." The libertarians are quite happy because the person is free to live (and die) in psychosis.

The only person who is not happy is the inpatient doc who knows that is a travesty of humane care.

Unknown said...

"Clearly psychotropic medications don't agree with some people, and clearly they don't make everyone with psychiatric illness all better, but there is a contingency of people who feel that since medications were for bad for them, they are bad for everyone. They are wrong."

What I don't understand is why psychiatrists don't admit that sometimes these mess don't work to their patients?

Why their first line of thought is not med side effects but "new symptom of illness"?

And in regards to "violence" what is the percentage of those who commit violence in psychotropic drug withdrawal?

Having experienced antidepressant withdrawals doctors are ignorant of the dangers of it. This term "discontinuation syndrome" is a slap in the face for the people who have experienced both the horrific psychical and psychological withdrawal symptoms associated with stopping an antidepressant. I can't even imagine what it might feel for a more potent and toxic drug as an antipsychotic.

And lastly the fact that these drugs affect the
body in such unpredictable ways as Psychiatrists say, "we don't know why some drugs work while others don't" I mean in what other field of medicine is that acceptable. To me it seems like you doctors are literally experimenting on humans.

I suffered high white blood counts, high blood pressure, high sugar levels, low thyroid levels, ectream exhaustion and a 30 lb weight gain. All side effects my doctor never seen or heard. Yet I stop the meds and this all disappears?

In an emergency, sever psychotic episode, I can see meds as helpful. But i think more and more research and history will eventually prove the use of these drugs long term or the use of "poly-pharmacy" has harmed millions of patients. And unless more doctors in your feeild wake up and address this problem this will become the biggest stain on the Psychiatric field.

Steve said...

I feel like everyone just beats around the bush on this issue. For instance, Dinah notes that she didn't need to research and write a book to say that people experience their illnesses different. Obviously that is not the point of the blog post, even if she writes that at the end. The point seems to be that patients experience things so differently that we should just avoid thinking about policy(?) or maybe (implicitly) that so many people enjoy their psychosis that we shouldn't do AOT or commit anyone, or have perhaps we should have a really high bar before committing people (like we currently do)? I have no idea what the point was, to be honest, except that it clearly isn't that people have different experiences because that is admitted as being too obvious.

I feel like case studies would be really helpful here. Dr. Hurford brings up her patient who thinks he's a prophet and IIRC says she treated him eventually, but that she really wasn't sure so that is kind of like the dividing line for her. For me, I think anyone who thinks they are a prophet is completely nuts and obviously needs treatment. That is not a close call. Maybe everyone who writes on this topic should have to take a stand in the first few paragraphs?

Dinah said...

Steve, I think policy needs to take into consideration the best interest of the individual with the awareness that individuals are different, experience their illnesses differently, and experience treatment differently. But, no, the object of our book is to point out that this is a very complicated topic and not one that should be polarized into 'for forced care' or 'against forced care' but that all views should be heard and considered and that this is not a Take a Stand issue. And Dr. Hurford did treat the patient, so I think the debate may have been a philosophical one, not really a plea to deny treatment to people who are psychotic and want help.

Steve said...

Dinah, it basically sounds like your point, which you admit is obvious and that everyone agrees with, is that what is best for different people at different times in different places will be different. That is true for every policy issue--certainly there are times when it is best we allow people to drive drunk or steal from their neighbors, but they are rare enough we don't even bother codifying when those exceptions would apply into the law.

Courts need rules of thumb to use and standards for deciding who should direct their own care. For instance, should people who lack insight, denying they are ill when 99% of outside observes, get to decide on their own care? For me this is easy--no, they shouldn't. For Dr. Hurford she isn't sure. For you, we have no idea, but by insinuation we get the impression you think there are lots of cases where someone who denies they are ill should still be deciding on their care. You didn't say it... but what you did say seems so obvious that we can't help but assume there is a subtext and that subtext of "psychiatrists are clueless/lots of people who are prophets are being treated and its wrong/etc." is what George is, rightly, complaining about.

James O'Brien, M.D. said...

Every crime is also different but that doesn't mean that state can't formulate guidelines on how to deal with it.

The romantic relativist "King of Hearts" notion of psychosis as just another person's version of reality is in full effect in downtown San Francisco if you want to see how this works in practice. My impression is that it is a dystopic hell hole than smells like a urinal, and the refusal to compel treatment or judge psychosis is not only killing the mentally ill but civilization itself. The mentally well cope by putting on headphones and avoiding eye contact. Needles and body fluids are everywhere on Mission Street. That's a regressed society, in my book. It's not good for them, it's not good for us. I echo everything Dr. Dawson said. The path of least resistance is to avoid spending half a day in court and to let the system win. I have never met a psychiatrist who either makes a fortune or enjoys filing commitment papers even when necessary.

James O'Brien, M.D.