Tag Archives: serious mental illness

Serious Brain Illness: We Can Tear Down This Wall


Today, on the birthday of Dr. King, what will you do to honor his memory?  I took some time to think about the particular essence of the work he took up, the work that never gets completed and is always necessary.  I’d like to suggest there are two basic elements of that work.  First, we must always bear witness to our shared wrongdoing, by naming and calling out the human-made class, habit and stereotype driven barriers to human potential; and second, we must just as vigorously speak of our capacity for something better, offering each other enlivening glimpses of the possible future, through the yet-to-be torn down walls.

The barrier I want to call out to you today is the one we’ve created for those with serious brain illnesses like schizophrenia and other psychotic disorders.  We didn’t cause these brain illnesses, as best we can tell— they present their own barrier, for sure, but that’s not the one I’m naming. 

The barrier I mean is our special singling out of humans with life-threatening brain illnesses to be left largely without treatment, ignored and even criminalized.   If you watch this video of a man with schizophrenia, homeless due to his illness, being beaten to death by police instead of given desperately needed treatment, and you then learn his killing was not found criminal by a jury, you can see what our created barrier has done.

I had a hard time watching that.  I had to do it in pieces.  I said I wasn’t going to watch, because my imagination was painful enough, and because nothing about this event is actually new or unusual, and because I am a caregiver for a young adult with this same illness, and because I didn’t need another reason to cry about what is happening to sick people.  Lots of excuses, but bearing witness means we have to watch the hard parts.

Now you can take a breath, and I’d like to offer the second half, a glimpse of a future where we tear down the barriers to treatment we have built.  We made them:  we can take them down. 

We haven’t seen substantial national legislative effort to do anything until recently, with the Helping Families in Mental Health Crisis Act.  Representative Tim Murphy, a psychologist, has put forth a game-changing bill that would go a long way towards allowing people with serious brain illnesses to live safely and with dignity in their communities, instead of being consigned to homelessness, jail, and early death.  I have read and thought about the bill in entirety (there are links in the site above).  I endorse it strongly. I am contacting my legislators to request their support.  I believe it will do some work that seriously needs doing.  That’s my short version.  If you’d like to know a few more specifics, please read on and also see discussion of the bill here.  If there are questions not addressed, please let me know and I’ll try to get an answer for you.

Quick Summary of HR3717: Helping Families in Mental Health Crisis Act

This bill would restructure administration of planning and funding at the federal level in a shift towards known to be effective policy and an evidence-based approach to evaluating programs.  Focus would be put on services allowing persons with serious brain illness to stay in their communities while being effectively treated.  Specific parts of HIPAA (health information privacy law) would be modified to allow caregivers to know information necessary to health and safety. 

I have seen criticism of the bill from advocates with milder brain illnesses who fear mandatory treatment would be forced upon them or that choice would be removed from those who have done, as is typically said “nothing wrong besides being mentally ill and homeless.”  I can certainly understand why someone with a mild illness would extrapolate the same ability to think and reason clearly to someone more severely affected and be concerned about the ill person’s freedom.  Indeed, we all might do well to have the level of concern necessary to monitor treatment programs and legal action from misuse.  There will always be a gray zone where assessment of competency to make decisions is uncertain.  On the other hand, we don’t quit giving antibiotics to patients with meningitis just because they are used wrongly for viral illnesses. We don’t shut down hospitals that are needed but are not functioning well, because we still need somewhere to go when we have heart attacks—we fix them. Wait, we DID do that…but only for brain illnesses.

Reading this bill, I would say that if an error has been made, it appears more likely in the direction of slightly undertreating, due to long-standing fears of overcalling brain illness.  The gray zone has been largely excluded. Only those with the most severe psychotic illnesses are addressed by the bill, and some will still be left out in the effort to preserve rights.  Breaking down a barrier takes time and sometimes has to be done stepwise.

As I’ve discussed in prior blogs, those with severe brain illness often present with anosognosia—inability to recognize their illness.  Rational thought is lost due to the illness itself, which renders the choice of treatment or not meaningless to the person.  Paradoxically, mandatory treatment can sometimes restore thinking ability to the point of competency.  Even when that doesn’t happen, treatment increases the chance substantially that the person will be able to live in the community and enjoy the normal rights and potentials the rest of us enjoy.  A person having a stroke will be treated, even though he can’t ask for help.  A person with severe brain illness, whose illness steals his ability to understand why help is needed, is not treated because he doesn’t ask.  Both must be treated in order to access their ordinary civil rights.

Funds Currently Misdirected

SAMHSA, the Substance Abuse and Mental Health Services Administration, would come under direction of a new office, the Assistant Secretary for Mental Health and Substance Use Disorders, as part of the Department of Health and Human Services.  This person would have to be an actual psychiatrist or psychologist with research and clinical experience.  A National Mental Health Policy Laboratory would consult with the National Institute of Mental Health to identify evidence-based policy, implement it, and monitor outcomes.  An interagency coordinating committee would work to integrate all federal work on mental illness and would include representatives affected by brain illness under treatment, family members, and advocates.  Professional peer review would be required for all grants and proposals.

At present, SAMHSA is not administering available funds in a targeted, evidence-based manner.  Priority is not being given to those with the most severe though treatable illnesses and is being distributed to various fluff grants instead.  Sometimes redesigning administrative functions is just window dressing.  And sometimes, that is the only way to shake things up enough to change them.

A few years ago, I was offered a chance to attend a SAMHSA funded training session for healthcare providers on substance abuse screening.  Because I was in the process of helping a group of pediatricians in my state select a screening tool for teens, I registered, hoping I would learn more about how to use the tool.  I had a paid trip to Miami, where I stayed in a fancier hotel than I would ever manage on my own, for a 2 day session targeted primarily at screening and motivational interviewing for basically well people.  Instead of focusing on how we could work with patients ill with serious addiction, the thrust was on how anything more than 1 drink a night for women or 2 for men could be a health risk and how we could help people quit doing that.  Addiction was normalized and thus forgotten.  How many people could have undergone actual treatment for the funds taken to do that conference?  If the restructuring frees up funds to be used well, we can afford to do so much more.  Throwing money at a problem definitely doesn’t solve it when so much goes in the storm drain or gets blown away—aiming and directing money at a solution works much better.

Redirecting Funds: What is AOT?

There would be 50 grants available to establish new Assisted Outpatient Treatment programs (AOT).  AOT is an evidence based therapy to provide monitored treatment of brain illness in an outpatient, community setting.  The requirements are stringent—only those who are not able to provide for their own basic needs due to brain illness, who are likely to substantially deteriorate without treatment, who lack the capacity to make decisions, who have a history of violence, incarceration due to illness or repeated hospitalizations due to non-adherence with treatment, or who present a danger to self or others would be included.  AOT has been determined constitutional in court.  Typically outpatient commitment is ordered for a one year period and can be renewed, but only if the same conditions are still met.  At the court hearings for commitment to AOT, the patient would have legal representation and could give testimony.  No permanent or longstanding sentence is imposed.   If a year seems long, remember illnesses this severe and chronic are not likely to be going away.  And prison sentences for untreated persons are often far longer.

This does not mean the eccentric guy who puts out funky lawn ornaments is going to be held down and given a shot.  It does not mean every person who hears voices, or mumbles to herself in the grocery store, or is disheveled, or preaches on the street corner is going to be picked up by police.  Forget what you’ve heard about mental illness being so common and ordinary—it is not, not the kind covered by this bill.  We don’t have the money to do that kind of thing anyway.

The bill would increase funding for the most serious forms of brain illness and specifically devote a portion to illnesses associated with violent acts, in effort to find more effective treatments.  It would provide for education in schools on signs of brain illness and how to respond.  It would extend meaningful use funding for electronic health records to psychiatric facilities.  Liability protection would be extended to qualified volunteer physicians at outpatient psychiatric clinics.  Funding would be put into suicide prevention programs.

The bill would give grants to establish telepsychiatry programs and train primary care doctors to work in collaboration with psychiatrists.  It would give planning grants to 10 states to establish Federally Qualified Behavioral Health Clinics, which would be required to include child and adolescent trained psychiatrists and staff, training in dual diagnosis (addiction plus another brain illness), rehabilitation services, peer support, and supported education/ employment.   It would fund training for first responders to recognize brain illness and act appropriately to avoid killing the person they need to help or being killed themselves.  It would strengthen funding for mental health courts and veterans’ treatment courts.  It would protect medications from exclusion from state Medicaid formularies.  It would fund inpatient and residential treatment for those on public insurance between age 21 and 65.

Eliminating Obstacles to Sharing Vital Information with Caregivers

For patients being supported by a caregiver, usually a family member, at present HIPAA creates a dangerous barrier to good care.  In order to provide home care that is actually a form of residential, medical care, the parent or other family member must be able to know what medications are to be given, what side effects to look for, what symptoms of relapse are, and how to respond appropriately.  The caregiver must also be able to locate a hospitalized family member and be able to give crucial information to the treatment team.  We ran into a problem with this a few years ago, when we were not contacted upon hospitalization of our family member until he gave consent the next day.  He had been started on a medication that had given him dangerous side effects in the past, and we could have prevented that had we been notified.

The bill would allow only such pertinent information to be shared with caregivers, the same as it would be shared with nursing home staff.  If a person is not ill enough to need a caregiver, this section is irrelevant.  So it does not mean that your therapist is going to tell your mother about your session and what you said about her.

Flaws in the Bill

So, what are the flaws in this bill?  Every bill has them, of course.  These are the ones I see:  non-brain-based language is used throughout—“behavioral” is a particular annoyance.  People with heart attacks are having a “behavior” when they grab their chests, I guess.  The same-old same-old “quality” monitoring measures and incentives are proposed, which are not really measurements of quality care but of less sick patients.  Effective quality improvement can be done, and not like that.  The HIPAA improvements do not, for some reason, include 14 to 18 year olds.  A friend suggested to me this was because state laws regarding minors are so different.  However, at least it would be wise to include caretakers for emancipated minors in the safety-motivated release of information.  There is no provision to require medical information to be given to primary care doctors by psychiatrists, which turns out to be harder to get done than you’d think.  Many states have restrictions on sharing such information, despite it being crucial to safe patient care.  I see a lot of grants and funding which appear temporary, so I do have concerns that states may establish services that will then lose funding.   This is not a reason to avoid beginning, just a caveat that we will need effort to maintain what we start.  I do not see any of these flaws as critical to change before passing the bill.

Today, I have made my very small act in honor and appreciation of Dr. King and his life’s work.   I have called out a harmful, human-made barrier to the lives and dignity of those affected by serious brain illness.  And I have shown you a view of the possible, a better path forward.  Small acts can add up, when we all do them.  What do you see, in place of the barrier?  What will you do to help take it down?

2 Comments

Filed under addiction, evidence based medicine, Healthcare reform, mental health

Serious Brain Illnesses and the ACA: No Relief for the Weary


As a pediatrician whose patients and their families sometimes develop serious mental illnesses, and as a family member and caregiver, I can tell you the word “serious” is a euphemism, a polite understatement.  I have a friend with stage IV cancer who has received life-saving treatment for many years—she is able to work, care for her family, and enjoy her life despite the fatigue and side effects.  If she were to stop treatment she would likely die quickly.  Her illness is serious.  Treated, illnesses like schizophrenia and bipolar with psychosis settle to the level of serious.  They are not really “mental” either, which sounds as if we are speaking about nebulous, abstract, idea-based problems —they are brain illnesses.  Let’s call them what they are.  Untreated, these brain illnesses are not serious—they are devastating, catastrophic, and deadly.   Those who do not die wind up far too often in prisons unprepared to care for them or homeless, living—if one can call it living—under bridges and in doorways. 

 

Brain illness care has long been the red-headed stepchild of medicine—barely funded when required by law, and far too often, not even then.  For decades, advocates have worked towards parity, the equal treatment of brain and other body illnesses by insurance, only to witness seemingly solid legislation morph into a sieve of loopholes.  Anyone who has watched can testify to the creative genius of private insurers, against whom no legal barrier to patient abuse has so far succeeded.  Prohibit annual or lifetime payment caps and they limit the number of visits allowed.  Require inpatient hospital coverage and see new categories like “partial hospitalization” that don’t count.  Require outpatient coverage and get provider networks at payment rates so low hardly any doctors sign up.  Will the Affordable Care Act (ACA) along with the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 do any better?  My short answer is “no.”  For the long version, read on.

 

 

Under the recently released final rules for parity, effective for plan years that begin after July 1, 2014, most private insurances (except for grandfathered small group policies) will have to provide some brain illness coverage.  The exact services covered will vary between states, because of the way the Department of Health and Human Services interpreted the ACA.  By making Essential Health Benefits depend on prior insurance offerings in each state, the word “essential” is stripped of any semblance of ordinary meaning and varies when we step over the state line between Alabama and Georgia.

 

The final parity rules removed an earlier stipulation for insurers to use clinically accepted standards of care for brain illness treatment authorization. If a treatment is recommended by national experts and advised by your own doctor, the insurer does not have to use the same guidelines and can deny payment.  Although plans are supposed to use similar methods to develop provider panels for psychiatric and other medical care, the parity rule discussion says disparate results in the composition of those panels don’t prove there is a problem.  So if your plan does not include sufficient psychiatrists on the panel accepting new patients (a common issue) but has plenty of other types of specialists, you may not have grounds to protest if the insurer can figure out an excuse.  If insurers are only providing certain elements of brain illness treatment in order to satisfy the ACA, they don’t also have to meet the full requirements of parity otherwise. 

 

There may be some relief to states and patients for coverage of court-ordered brain illness treatment, because insurances can’t restrict such coverage if they don’t restrict it for other court-ordered medical services.  For example, if a court-ordered blood transfusion for a child would be covered, then services provided during a court-ordered psychiatric hold should be covered as well.  I am uncertain if insurers will be permitted to exclude the entire category of all court-ordered treatments to evade this element—I do not see reference to this in the ACA itself.  If that is an available loophole, we will certainly see it used.

 

If insurers cover a certain type of care for medical illnesses, such as outpatient rehabilitation or residential treatment, they must now also cover it for psychiatric illnesses.  That sounds good on the face of it— funding is greatly needed for day treatment programs and other levels of supervised care.  Unfortunately, the option is still wide open for insurers to deny or limit authorization for such services based on… well, whatever they want to base it on, absent any requirement for using accepted standards of care.  I expect we will have services mainly in theory, denied in practice by some set of arbitrary criteria.

 

In a particularly odd arrangement, insurers that can demonstrate a 2% or more increase in costs during the first year of parity can request exemption from parity the next year, and afterwards a 1% cost rise gets them a one year exemption.  Potentially, subscribers could have brain illness coverage every other year.  If my friend with cancer got her chemotherapy only every other year, what do you suppose would have happened by now?

 

The point-of-service cost-sharing barriers are substantial under the ACA.  For those with lower incomes who don’t qualify for Medicaid and have subsidized plans, a $30 co-pay might as well be $300 if they don’t have it.  A $2000 deductible or out of pocket limit?  Unimaginably out of reach.  People affected by serious brain illness are more likely to have lower incomes and thus likely to forgo necessary care at a lower level of up-front cost.

 

Some with serious brain illnesses who have not been able to get private insurance due to their pre-existing conditions may now get private policies.  Those under 26 can now stay on parent plans—but will these newly covered persons have access to care?  Having an insurance card is not at all the same thing as being able to get treatment.  At the onset of illness, many already had private insurance that failed to meet their needs.  I have seen no improvement at all in access for my privately insured patients to appropriate care for brain illnesses.

 

For long-standing serious brain illnesses, partly because treatment barriers and gaps have contributed to loss of function, public insurance is common—either Medicaid, for those with SSI Disability, or Medicare for those with SSDI.  I do not see the kind of changes in either of these programs that would be needed to prevent care gaps.  The “donut hole” for Medicare prescription coverage is closing, but there remains substantial out of pocket cost.  There is no parity requirement for payment of psychiatrists in Medicare and payment is low compared to other outpatient services.  Consequently, finding a psychiatrist who accepts Medicare isn’t easy.  In my city, the only option is the county Mental Health Center, already overloaded.

 

Medicaid appears to be affected by parity only if it is administered through Managed Care Organizations or Alternative Benefit Plans.  The Medicaid Expansion, in states that adopt it, will add some with brain illnesses who have not been able to get disability benefits.  The main barriers to care for those with Medicaid are funding, generally severely inadequate at the state level, and commitment laws that hinder timely treatment when the patient is sick enough to be unaware of the illness (anosognosia).   When it comes to strokes and heart attacks, we hear “time is tissue”—the rush is on to treat patients urgently, conscious and asking for help or not.  With serious psychosis, just as damaging to brain tissue if untreated, we bizarrely decide the ill person, unable to make rational decisions, does not want help.   Staffing at Mental Health Centers is limited, wait times are lengthy, and necessary community supports are minimal to absent. There is no move towards building a serious brain illness treatment infrastructure in the ACA.  If care is affordable but not available, patients are left behind just the same.

 

Although Medicaid pays for residential care of those with intellectual disabilities, there is an “IMD exclusion” prohibiting federal matching funds for care in a psychiatric hospital.  This has helped cause deteriorating service quality at state hospitals and made it appear cheaper for states to put those with serious brain illness in jail than to hospitalize them.  The ACA includes a “demonstration project” to pay private psychiatric hospitals with Medicaid funds to provide emergency services in some states. Because private hospitals have higher administrative overhead, proportionately less money may be used for actual patient care than in lower overhead public facilities.  The demonstration project funds are not available for public psychiatric hospitals, although the money is public in origin. Why not use those funds to improve state hospital care and coordinated transition of care to communities?

 

Because milder brain illnesses are more common and seem to garner more popular sympathy than serious cases, I am also concerned about wise use of scarce resources. The ACA does nothing to ensure that priority will be given to those most severely affected, both in terms of initiating treatment and maintaining it.  The spectrum of brain illness is broad, just as for other medical illness.  It is being absurdly stretched to include non-illness ordinary frustrations of life so providers can be paid for their preferred “patients.”   

 

I would not begrudge a person with a mild brain illness appropriate treatment any more than I would a person with a mild asthma flare-up.  Mild problems can become serious without good care.  At the same time, I would not leave a person in my waiting room gasping for breath to see one with a head cold.  I would not stop insulin for my patients with diabetes just because they “look good right now” in order to counsel basically healthy people on how to eat more vegetables.  And that is the sort of mindlessness happening in brain illness care right now—priority is given to the worried well.   

 

Although we have no cure for the most devastating brain illnesses, we most certainly do have multiple proven interventions that can, much of the time, bring those affected to the level of the merely seriously ill.  Treatment reduces the risk of relapse and allows many to have meaningful lives in their communities.  Just as with cancer, brain illness can sometimes worsen even during treatment so that the care plan needs to be adjusted—this can only be effective when care is continuous and frequent enough to catch the early signs of trouble.  Each relapse not treated quickly and skillfully may cause cumulative, permanent, unrepairable damage to the brain.  Treatment gaps in a system full of cost and access barriers can mean death. 

 

Any reform of healthcare that fails to address the needs of people with serious brain illnesses, including their critical need for continuous care with no loopholes or gaps, is a sham, a travesty, and a parody of reform.  I am weary of seeing tragic headlines about those we have failed, when I know we already have the knowledge and tools to do better.  My grade for the ACA on brain illness?  Fail.

2 Comments

Filed under HHS rules on ACA, Medicaid, mental health

Letter from Bazelon: Alabama’s Mental Health Funding Crisis


Interesting letter to Governor Bentley from the Bazelon people.  This is the law firm involved in the Wyatt vs. Stickney case– if you don’t know about that, there is some good background on it by Dr. Fuller Torrey’s group.  It is the lawsuit that resulted in the tragic consequences of deinstitutionalization in prior decades– the burgeoning population of homeless mentally ill, the dumping of sick people into prisons, and the loss of sick persons to suicide.  It was intended by some involved to force hospitals into better standards of treatment, not to abandon patients entirely– but the consequences were disastrous.

The letter is a clear threat that if Alabama doesn’t fund our mental health, we are about to get sued– again.  Bazelon says Bentley should apply all the funds initially intended for Bryce to use for transitional planning and they seem to think this will be enough.  I am uncertain of that– we need not only funds for transition, including capital costs and training of new personnel, but also for the ongoing expenses of our current and future services.  Using one-time funds may not cut it– we won’t know until DMH releases a clear plan and estimated expense.

Bazelon’s insistance on closing all the hospitals may be misguided– the Olmstead decision says that we should place people in the least restrictive setting possible, and to integrate them into the community if it can be done.  Some people are too sick to make it in the community, no matter how hard we try, until we have a real cure.  More will be intermittently very sick, since relapses happen even while on previously effective medicine, and they must have a secure, safe place to get treatment.  It is possible we could replace the hospital with local crisis stabilization units– we should be open-minded– but they would have to have capacity to keep people until they are REALLY ready for a lower level of care.  Here’s a brief breakdown of what Olmstead requires and does not require, from Iowa– note that it does NOT require all hospitals to be closed!  It just says that people can’t be kept in the hospital longer than they need to be there, if it is possible to serve them in a community setting.  The pitfalls of over-reliance on community settings are severe.  Bazelon is hurting us by over-interpreting Olmstead.

Bazelon has an ulterior motive that conflicts with reality.  They do not believe in commitment, even to outpatient care– they think all patients with mental illness should be left to their own devices unless they are right about to kill someone.  The reality this conflicts with?  There is a well-studied phenomenon in serious mental illness called anosognosia.  People who have this are incapable of understanding that they are sick or need treatment, the same way as some people after a stroke will not be able to believe they have a left arm.  It is part of the illness itself.  Real advocates for loved ones with mental illness have a more realistic approach.  We are definitely not in favor of restrictive setttings when they are unneeded, and we fight for the inclusion of patients in making their treatment decisions whenever possible.  We want our loved ones to be as independent as they can be and to have fulfilling lives.  None of that is possible if they die from suicide or undergo permanent brain damage as a result of inadequately treated illness.

Torrey’s site has a good explanation of why we need approximately 50 hospital beds for each 100,000 population (same as my prior estimate of 140 beds needed for Madison County alone) and a list of capacities per state– notice Alabama is far short.

Bentley and Baugh have promised that they will not close the hospitals until local infrastructure is ready.  If they keep that promise, the transition could go well.  The reason many of us are not reassured by their words is many-fold.  There have been multiple and rapidly changing plans issued from DMH since February, so we are uncertain anything they say is going to remain in place.  They have not yet told us how they will pay for it or how they will apply the 2012 proration to DMH without hurting outpatient services.  At our regional meeting last week, we were told that DMH couldn’t guarantee a timeline because it depended on funding– which is in direct conflict with saying the timeline depends on having infrastructure prepared.

The threat of lawsuit may be the only thing that saves our mental health system.  Will Bazelon be just as ready to sue on behalf of those who become homeless or commit suicide because they have inadequate care as they are to sue for what they consider excessively restrictive care?  Don’t hold your breath.

1 Comment

Filed under Alabama legislative session 2012, mental health, Uncategorized

A Consumer By Any Other Name….


Recently, Paul Krugman took on the use of the word “consumer” as applied to patients, in his blog post “Patients are not consumers” http://www.nytimes.com/2011/04/22/opinion/22krugman.html?_r=1.  You should read it, and then come back here.

First, let me tell you that I agree with almost everything Mr. Krugman says.  It is indeed a travesty to treat medical care as a commodity.  I’ve written about that before.  As a member of Physicians for a National Health Program, I am working to bring about national health insurance, with lifelong medical care for all of us — everybody in, nobody out.  But I’d like to address a particular question Mr. Krugman posed, one he may have intended rhetorically: “How did it become normal, or for that matter even acceptable, to refer to medical patients as ‘consumers’?”

Because he never mentioned the original history of this usage, I’m going to guess Mr. Krugman doesn’t realize where it started.  I only found out a few years ago, when I became a member of NAMI, the National Alliance on Mental Illness.  NAMI is an advocacy organization started by family members of persons with serious mental illnesses (SMI)– diseases like schizophrenia and bipolar.  In NAMI, I learned that “consumer” was a label patients chose for themselves back in the 1980’s.  Initially, it was part of the anti-psychiatry movement–some people even called themselves “survivors” of the psychiatric system.  Later, the term evolved into common usage among people who did seek traditional psychiatric care.

So why did they pick that word?  If you do not suffer from mental illness or have a family member who does (I don’t mean mild depression– I mean the illnesses people get committed to institutions with), perhaps you haven’t experienced the loss of dignity so commonplace for those with SMI.  In many ways, it is better today, partly through the efforts of NAMI– but some aspects remain the same.  Can you imagine being stripped of your belongings, forced to take medications with miserable side effects, and deprived of most freedoms the rest of us enjoy?  And having this treatment called medical care?  It is true that because severely psychotic people often don’t recognize their own illnesses, treating them without their consent may be the only way to save their lives.   The psychiatrists who deliver the unwanted but desperately needed care are often quite compassionate and empathetic.  None of which removes the degradation and humiliation entirely.  Or the anger.

Angry patients called themselves consumers for a very specific reason– to remind healthcare professionals who paid them.  It was a way of taking back a measure of autonomy and personhood, in the midst of a patronizing system.  Now, 30 years after the consumer movement began, organized groups of persons with SMI still proudly call themselves consumers, as they work to erase the misconceptions and stigma of their diseases.  When I posted a comment to this effect on Facebook, one person in the mental health field responded that she calls her patients “clients.”  Here’s my first question, and this one is definitely rhetorical– since when do we have the right to choose labels for other people?

Yes, the term consumer is distasteful in my mouth.  I hate the idea of my patients seeing me as some sort of saleswoman.  But  other than in my personal role as an occasional patient, I have no standing to criticize any word chosen by others to describe themselves.  I would be especially unwilling to attack usage by persons with mental illness. 

Now for my real questions.   Has the word consumer simply been hijacked by insurers, grossly insensitive to the consumer movement history?  Or have patients themselves– those without mental illness–begun to see themselves as consumers too?   Will some begin to call themselves “survivors”, not of their illnesses but of our medical system? Perhaps physicians, by putting their bank accounts before the needs of their patients and failing to defend them against corporate insurer greed, have helped injure the very meaning of our profession.  Last year in a debate with two conservative doctors, I was aghast when one stood up and said “I am a businessman”, followed by loud applause from an audience of community leaders.  My response that I saw myself as a professional drew little interest.

Before we try to reverse the renaming of our patients, we need to listen.  In medical parlance, we need to take a real history.  If the people we care for in our offices believe they are consumers, our healthcare system doesn’t just need therapy.  It needs a heart transplant.

5 Comments

Filed under Healthcare reform