Friday, November 21, 2014

DJ Jaffe: The 4.2% (or the Us / Them Dichotomy)

Over on Pete Earley's blog, he gives the text of a speech by DJ Jaffe, a mental illness advocate.  Mr. Jaffe contends that those with serious mental illnesses constitute 4.2.% of the population and those people can be differentiated from the rest of the population, including the 20% of the population in any given year who have DSM diagnoses which are "mainly minor illnesses like anxiety." Jaffe would like to see those with real mental illnesses, who aren't the worried well, moved to the front of the line for services.  

I've ranted before about how I still don't know who those mentally ill people are -- I did a poll on this on Shrink Rap and got results from 696 people and wrote about the results Here and Here.  I've been in private practice for over 20 years, and have worked at 4 different community mental health centers, including a stint volunteering at HealthCare for the Homeless.  Many of the people I see spend most of their lives doing very well, and for Catlover who commented on the post on The Violent Mentally Ill, I'll add that when they are well, they are indistinguishable from everyone else: they go to work, they care for their children and parents, they are doctors, lawyers, teachers, the heads of companies, and they do amazing volunteer work and give generously to charities.  And when they are sick, they suffer, can't get out of bed, miss work, stop eating, and feel suicidal.  Some of these very well people hear voices, have delusions, and shut down.  Some of the mentally healthiest people I know are also some of the sickest people I know -- it simply depends on what slice in time you catch them, and the sick part can be a very brief, but life changing, slice.  Many people I see have been hospitalized at some point, have attempted suicide, or have needed 4 or 5 medications at a time in order to be well.  

But Mr. Jaffe is right: there are some people who are chronically ill, who never get well, and who aren't going to work and contributing to society.  They cycle from the jail to the hospital to the street, and very frequently (as in almost always) this population includes people with substance abuse disorders.  Does it matter?  If someone cycles from the jail to the street and back again and they have a substance abuse problem which contributes, do they deserve less help than the person who also has a mental illness?  What if they have a personality disorder that destroys their ability to function, have relationships, hold a job, maintain housing, and live in a meaningful way in society?  And if you're in the midst of a terrifying panic attack, who decides if your problem is "mild?"  I don't like the Us/Them split with the idea that there is a clear divide.  We're all people, we all hurt sometimes, and some of us need more help than others : diagnosis is not the thing that determines that.    Nearly 40,000 people a year die from suicide; they aren't all obviously ill and sometimes we are left to be totally shocked.  400 physicians a year (the equivalent of an entire medical school) commit suicide and they probably weren't falling in Jaffe's listing of the severely mentally ill who cycle through jails and hospitals.  When people commit suicide, or school shootings for that matter, there were often subtle signs, but most of these people weren't in that 4.2% and weren't the obvious severely mentally ill. 

If you're suffering, you're suffering, and we need better services, available more readily, for everyone. The teenager who kills himself because he is distraught over a break up is just as dead as the man with chronic schizophrenia who dies on the street.  We need more and better treatments for substance abuse, and we need more and better treatments for those mental illnesses that are resistant to the medications that are available now.  We need more ACT teams, more housing (because it's hard to get your medicines if you have no address to get your check and no shelf to put them on), more peer support, more transportation.  Offering help to those who suffer but don't have severe, chronic, and persistent mental illness should not be equated with stealing services from those most in need.   

[This weather calls more for a snowy owl theme, I think. --Clink]



ClinkShrink said...

Nice bird pic, again.

Saying "stealing services from those most in need" isn't really the issue here since all the cases you mentioned need services. I think it would be more precise to say those who are severely but episodically disabled are in need of services as much as the persistently disabled. Need based on functional impairment rather than diagnosis, perhaps? That would hugely expand the pool of people in need of services, but it would reflect clinical reality a little better. Even people who "only" have a personality disorder still consume mental health resources, if you look at this from a purely economic standpoint.

Dinah said...

I'm going with a pretty bird pic theme for a bit.

People who have "only" personality disorders are not permitted access to any mental health services unless they pay full-fee cash. You must have am Axis I diagnosis to be eligible for reimbursable mental health services in this country.

ClinkShrink said...

I know. That's my point. People with personality disorders end up in the emergency room, on the inpatient unit and in jails and they use mental health resources, but no one gets reimbursed for that. When someone has surgery no one says, "I'm not going to reimburse you for the cost of that scalpel because in the end you didn't find cancer." It's ridiculous. If you spend hospital days clarifying that someone did NOT have a mental illness, that still required professional time and hospital resources.

This is the problem with tying need for treatment and reimbursement to diagnosis rather than professional time and resources used.

Dinah said...

Oh, they get a diagnosis. Adjustment Disorder (everyone's adjusting to something), Dysthymia. Depression, anxiety, all that stuff that doesn't count per Mr. Jaffe.
"Other mental “health” advocates claim mental illness affects everyone and claim all mental illness is serious. They are wrong. All mental illness is not serious. Many people I worked with including myself, have had or have depression, anxiety, have trouble sleeping, take Zoloft or Prozac, or nothing and do quite well. We don’t need funds diverted from the seriously ill to the highest functioning." Treating the well he sees as stealing from unwell. But it's not until after the fact that we know which you were. Where would someone like Robin Williams fall on this spectrum? Certainly, he was high functioning. I say inner torment deserves attention.

catlover said...

It's only because nobody wants to pay for mental health treatment that this is even an issue. If a person has a broken arm, and go in to get it fixed up, are they stealing resources from the person who is quadriplegic and needs massive daily resources to stay alive? There isn't enough home help for folks with serious physical illnesses nowadays, either, and it's crushing caregivers.

Steven Reidbord MD said...

This is a complex issue, with good points on both sides. Mental health "parity" was an effort to spend money on more severe diagnoses. I saw the sense in directing resources this way, and frankly can't imagine a system of mental health coverage operating without a limiting criterion of some sort. (The alternative managed care approach is to limit treatment by duration not diagnosis, but it amounts to largely the same thing.)

As with the rest of health care, it's prohibitively expensive to pay for everything all the time, so some form of rationing is inevitable. (Conservatives prefer do this by the cost of the service, liberals by explicit rules.) So I do think it's a zero-sum game at some level, and that it's meaningful to argue, as Jaffe does, that relatively more public resources should go to the most severely impaired. I also agree with you, Dinah, that many patients are hard to cleanly divide into "worried well" versus "seriously ill." Any such distinction is imperfect at best.

This issue relates to something I've been thinking about lately: my direct-pay practice seems to clash with my support for single-payer health coverage in the U.S. I think this dual stance makes sense only when universal coverage is rationed or limited, allowing those who can afford it to pay extra for optional services. The problem, of course, is deciding what's optional.

Dinah said...

Catlover: it's always about money.

Steve: If this was a Facebook post, I'd press the little thumbs up. Like you, I have a fee-for-service practice and it troubles me -- I think it's the socially responsible thing to accept insurance, but even if I could see beyond a fee-structure which rewards docs for spending as little time as possible with patients, I can't see beyond the paperwork and hurdles to jump through.

Obviously, I believe that the sickest people need the most care, especially when we're talking about outreach/housing/case management/ and wrap around services. But for the worried well person who isn't obviously sick and who goes to school or work and eats lunch with friends, there should still be some way to get a same-day appointment if after lunch they are going back to their desk and thinking about how to kill themselves and they want treatment. And I think there is nothing useful the us/them divide. We can all be them. And we can say that we need to help really impaired people more without creating this divide.

R. said...

As someone who, with adequate treatment, leads a highly functional life (advanced degree, good job, healthy relationships, etc.), but without medication is frequently suicidal, the ideas presented by DJ Jaffe is highly concerning to me. People who do not know my history would probably place me among the "worried well" most of the time. However, I prefer (and think it would be preferable for society) to try to prevent relapses and to provide access to treatment that helps prevent me from becoming more significantly disabled.

R. said...

Also, I question the validity of the term "worried well." If someone is sufficiently anxious that they present for mental health treatment, isn't that a sign that they have sufficient anxiety that it is impacting their life in a noteworthy way? Why is this anxiety considered any less valid, any less disruptive to the individuals life, any less worthy of treatment?

EastCoaster said...

The other part that is tricky is that there are young people--say the young adult children of people with SMI--who are at high risk of developing those illnesses.

Developing a trusting relattionship with a therapist/psychiatrist (if only to talk about the challenges of dealing with that stuff) could potentially prevent someone from falling off the rails in the first place.

Anonymous said...

It has always frustrated me that people confuse diagnosis with severity. My patients are often told that they "only have an anxiety disorder" when they are some of the most debilitated patients I have ever seen. Thanks for standing up for the "mere" anxiety and personality disorders.

By the way, what about preventive medicine? If we treat people when they have mild symptoms might we avoid having to restabilize them when they get serious symptoms?

Anonymous said...

I don't get the confusion about the us/them thing. He's talking about the tiny share of the population that is currently REALLY sick. Lots of people get cancer but only a small share has cancer at any given moment. The 4% are the people who currently have cancer and the other 96% are people who might one day. You can shift between the groups over time.

Somehow oncologists (and other MDs who work with cancer patients) have managed to focus on giving chemo to the people with malignant tumors, while also doing some biopsies and whatnot, mammograms, etc. Psychiatrists on the other hand spend most of the time with the people who might maybe one day be psychotic (real disease in the DSM 5!) or suicidal while the sickest people run around in the streets if they are lucky, and jail cells if they are unlucky. Could you imagine if people would cancer couldn't get chemo but it was easy to get a mammogram? That is how our mental health system allocates resources.

glenn said...

OK. I'm sitting in your living room and here's my question. How many of those 40,000 (or 400) suicides are the result of being diagnosed with a terminal illness that has a painful and unpleasant endgame.

Anonymous said...

Focusing on those who look really sick to the exclusion of those who don't would be a mistake. Lots of times those who commit suicide don't look really sick. I remember seeing in the news a story about a mother who was missing, her children were well cared for, she was married, her husband and father said she did not have a mental illness, house with a picket fence, and all looked well. They found her. She had hung herself from a tree.

It would be a mistake to focus on the homeless or those who "look" ill to the exclusion of others. Those who don't look ill may actually be in even more trouble - like this mother.


Anonymous said...

Someone sent me this link. Nice to see a thoughtful conversation on this. My book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill is coming out in April 2017 and I flush out the arguments I made on the Earley blog, and in fact, double down on them. I hope the reaction is as thoughtful as this.
In a perfect world, I agree everyone should get all the health care they need for whatever they perceive they need it for. But we don't live in a perfect world, and the current system largely sends the least impacted to the front of the line, and the 'difficult' or 'high-needs' patients (I believe thats what docs call them) to anyone else. In fact, while everyone talks 'integration,' community health centers, GPs, and even many couch-specialists don't want psychotic in their waiting rooms. Jails and prisons are for that.
DJ Jaffe
Exec. Dir.
Mental Illness Policy Org.