Debating Forced Treatment and Mental Illness

 

The New York Times has done an admirable job since the Sandy Hook shootings in keeping a spotlight on our mental health system. Here’s an exchange about mandated treatment — sparked by a Harvard psychiatrist — that is worth reading.

To the Editor:

Recent tragic events have linked mental illness and violence. Some people — I, for one — consider this link dangerously stigmatizing. People with mental illness are far more likely to be victims of violence than perpetrators. Moreover, psychiatrists have limited capacity to reliably predict violence. Nonetheless, these events increase pressure to identify people who might conceivably commit violent acts, and to mandate treatment with antipsychotic medications.

For a tiny minority of patients who have committed serious crimes, mandated treatment can be effective, particularly as an alternative to incarceration. But for most patients experiencing psychotic states, mandated treatment may create more problems than it solves.

For many medical conditions, better outcomes occur when patients share in treatment design and disease management. Imposed treatments tend to engender resistance and resentment. This is also true for psychiatric conditions.

Patients with psychotic symptoms often feel that their own experience is dismissed as meaningless, like the ravings of an intoxicated or delirious person. Decisions to decline antipsychotic medications are often regarded mainly as a manifestation of illness — an illness the person is too sick to recognize — even though many people might reject antipsychotics because of metabolic and other toxicities.

When a clearly troubled person firmly believes that he or she needs no help, there are no simple answers. These situations are particularly agonizing for families. Safety is paramount — and at times can be elusive. Still, if psychiatrists humbly try to understand the person on his or her own terms, do not dismiss the person’s experience as meaningless and truly respect the person’s choices about treatment, sometimes this opens the way to an effective treatment relationship. For some suffering and alienated people — certainly not all — feeling respectfully understood can be a critical step toward recovery.

Mandated treatment is a blunt instrument that may drive more people away from seeking care than it compels into care.

CHRISTOPHER GORDON
Framingham, Mass., Jan. 28, 2013

The writer is a psychiatrist and an associate clinical professor of psychiatry at Harvard Medical School.

Readers React

After decades of relentless psychosis, forced treatment was the only way that my mother was able to begin her path to recovery. As a psychiatrist and a family member of a loved one with schizophrenia, I know well the challenges of caring for individuals who firmly and consistently refuse help.

For me, the dilemma of forced treatment is an issue of access to care, and should be based on whether an individual is able to fully understand the nature, risks, benefits and alternatives of treatment, or of refusing that treatment. Because of a phenomenon known as anosognosia, certain psychotic and manic individuals do not recognize their symptoms. Without compelling treatment for this population, they rarely voluntarily seek the care that they desperately need and deserve, often leading to heartbreaking outcomes such as homelessness and incarceration.

For my mother, and for hundreds of thousands of others with severe mental illness, declining treatment is not about providers not listening, side effects of medications or stubborn denial. She fundamentally does not believe she needs help, despite a wealth of reality-based evidence to the contrary.

While mandated treatment involves complex considerations and should be an approach of last resort, for individuals with a clear history of serious mental illness who are unable to make reasonable medical decisions, it is at times the difference between empowering the person with the illness, rather than empowering the illness itself.

GARY TSAI
San Francisco, Jan. 31, 2013

 

The problem with our mental health system is it prioritizes improving mental health over treating serious mental illness. Less than 9 percent of Americans have serious mental illnesses like schizophrenia. Another 25 to 40 percent have poor mental health. The “psychotic killer” headlines are the result of cutting services for the seriously ill to pay for services for all others.

We used to have enough psychiatric hospitals for the most seriously ill. Today, we spend more on mental health but are short 95,000 psychiatric beds. Three times as many mentally ill will spend tonight incarcerated rather than hospitalized largely as a result of our new spending priorities.

Are people with mental illness more violent than others? The 25 to 40 percent are not. Those in the 5 to 9 percent who go untreated are.

Court-ordered assisted outpatient treatment helps these most seriously ill individuals get treatment and reduces violence, dangerous behavior, suicide and incarceration. Such treatment programs go largely unfunded while programs for newly minted mental health issues like bullying are showered with dollars. To reduce episodes of violence, we have to target the population most likely to be involved in it. We have to send the most seriously ill to the front of the line for services.

D. J. JAFFE
Executive Director
Mental Illness Policy Org.
New York, Jan. 30, 2013

 

I am the parent of a 15-year-old boy who suffers from severe mental illness. My son has been violent. He has tried to strangle me, he held a baby sitter at knifepoint when he was 5, and he continues to be a danger to himself and others. My son is not a monster, and he is not evil. He is loving, kind, smart and polite. And he is severely mentally ill.

With all due respect to Dr. Gordon, I could not disagree with his views more. As a parent who lives in a state of crisis every day, I am sure that in this case, the patient’s rights would be better preserved by offering him a safe and therapeutic environment. A severely mentally ill individual is incapable of knowing what is in his or her best interest. For the small percentage of people who are severely mentally ill, involuntary treatment is the only solution. The alternative is the streets or prison.

If my son had cancer or any other illness or disability, he would receive the necessary treatment for his success and well-being. Unfortunately, because his disability is severe mental illness, and because of doctors and lawmakers who think like Dr. Gordon, my son will likely die on the streets or in jail.

That is an outrage.

LEISL STOUFER
Torrance, Calif., Jan. 30, 2013

 

I was hospitalized against my will and forcibly given electroshock and damaging medication. After three brutalizing years in the broken mental health system, the best help for me finally came from a kind and gentle doctor who listened to me, believed in my many strengths and encouraged me back into college and a full life.

Dr. Gordon is correct. Kindness is the best medicine of all.

DOROTHY W. DUNDAS
Newton, Mass., Jan. 30, 2013

 

Dr. Gordon’s preference for mandating psychiatric treatment only for those mentally ill individuals who have committed serious crimes is admirable — unless you are one of the victims of that serious crime.

As a state prosecutor in Maine for more than 20 years, I have had a front-row seat as the mental health community has abdicated responsibility for untreated, and obviously unbalanced, individuals until they have committed a crime. As a result, thousands of mentally ill defendants are crowded into county jails awaiting trial. But there are worse fates for these individuals.

Sometimes they become engaged in lethal police encounters, when law enforcement officers are forced to use deadly force to protect themselves or others. In Maine, more than 40 percent of individuals shot by police officers in the last 12 years had mental health problems.

Sometimes they kill family members. The 2010 Report of the Maine Domestic Abuse Homicide Review Panel found, “More than ever before the panel has reviewed cases involving intrafamilial homicide; a significant number of these cases involved perpetrators who have mental illness and are not medication compliant.”

As one newspaper commentator recently observed about Maine’s mentally ill, “We are killing them, and they are killing us.”

My colleagues and I regularly encounter family members of mentally ill defendants who plead with us to somehow get treatment for their loved one before they do something unthinkable.

I sometimes wonder if Adam Lanza’s mother faced this same predicament.

JAMES ANDREWS
Farmington, Me., Jan. 30, 2013

 

I am a mental health counselor and an advocate in the child welfare system, and I see the effects of enforced treatment on a daily basis. In my observation, receiving mental health treatment does not necessarily reduce violence, and can sometimes even make people more violent than they would otherwise be. While some people do just fine on medication, psychiatric drugs can sometimes induce or exacerbate violent behavior. Prozac was initially banned for sale in Germany in the late 1980s for this very reason.

Many of those responsible for mass shootings in the last 20 years actually were receiving or had received psychiatric drug treatment before they went on their sprees. Given the known side effects, it is likely that these drugs caused or contributed to a large number of these incidents. At the least, we can say that giving these people psychiatric treatment, even voluntarily, did nothing to prevent them from going on a shooting rampage.

Rather than blaming the victims, mental health professionals need to keep a close eye on those who are prescribed psychiatric drugs, and make sure that they are taken off such drugs if they show any signs of instability, violence or self-harm. Counting on enforced psychiatric treatment to reduce or prevent violent shooting sprees is at best ineffective and may, in fact, be making things worse.

STEPHEN T. McCREA
Portland, Ore., Jan. 30, 2013

 

Thank you, Dr. Gordon, for arguing against mandated treatment. As a mental health counselor, I am often appalled at how we have seemingly lost our way in our treatment of people experiencing psychotic symptoms. Rather than looking for alternative, more humane solutions, we have convinced this population that there are few options apart from psychotropic sedation.

We would be better off looking to other countries that are finding success with models such as “open dialogue,” a family and social network approach originating in Finland and now starting to be used in the United States.

MELANIE DOWNS
New York, Jan. 30, 2013


The Writer Responds

I do not deny that people suffering from mental illness commit acts of violence. I know that caring for a loved one who ragefully rejects help can be agonizing and that families often bear the burden of this violence. My heart goes out to Ms. Stoufer and her son.

Dr. Tsai powerfully captures the conundrum of an extreme case, in which his mother’s judgment was so impaired that compulsory care was necessary. However, anosognosia is a slippery slope.

It’s just too easy — unless we doctors are scrupulously humble — to mistake disagreement for disease, and inadvertently dismiss the legitimate preferences of people with mental illness. What applies to extreme situations must be very carefully generalized.

Mr. Jaffe highlights mandated outpatient treatment. For some, this intervention is helpful. But the research is unsettled. It’s unclear whether it’s the mandate or the availability of more treatment that helps people. It is clear that the more people experience their care as fair and noncoercive, the more helpful it is.

I believe we need more services that are inviting, build on strengths, offer peer and family partner supports, and include real choice about medications. In my view, we rely too much on medications — and inducing or forcing people to take them — rather than appreciating the complexity of the problems people face and providing services that people want.

Our fragmented, underfunded system has been disastrous for many. Jails crowded with people with mental illness testify to that.

Respecting the rights of our fellow citizens with mental illness requires reserving mandated treatment to conditions of adjudicated incompetence or imminent dangerousness, or as an alternative to incarceration.

Coercion is sometimes necessary, but we should be clear about its cost: trust and collaboration are largely incompatible with force. Genuine partnership can be a balm for many hurts, and open the way for some people to real and lasting growth.

CHRISTOPHER GORDON
Framingham, Mass., Feb. 1, 2013

 
About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

  • Audreyntony

    These mental heath professionals, including Dr. Gordon, are well meaning, I’m sure. They simply do not understand the “big Picture”, when it comes to serious mental illness.  I am a Mom who has lost 2 children to suicide, due to these illnesses. Currently, my 22 year old son is diagnosed and in prison for violence commited during a state of physchosis.  Medication works.  Treatment works, if our relatives can get it.  As far a talk therapy, or “building trust” in order to convince them to accept treatment……. get real.  Ever tried reasoning with an unmedicated person in a state of psychosis?  Forced treatment for our loved ones with serious persistant mental illness, with a follow up plan after being discharged, is the only way to reduce violence.

    • Terri Wasilenko

      I share your views and passion about treatment,the reality of an individual with anosogonsia listening to reason and the need for mandated treatment. Keep speaking up!
      Terri

  • Audreyntony

    I might add that, should forced treatment be implemented, it should be for a longer period of time than the standard 7 to 8 days.  Even 2 weeks is not enough time to reestablish stability.  A time period of no less than 30 days should be mandatory.  Forced treatment is useless unless there is a mandatory follow up plan after discharge. Currently, follow up is left to the patient who is often confused, in denial about the illness, and quite often non-compliant to medication and treatment after only a short time following hospitalization.
    Early intervention and early treatment have been proven to work miracles with serious persistant mental illnesses.  I often wonder if my adult children, lost to suicide, would be here with us, had society had a better handle on how to effectively treat them.

  • RuthAnne

    Both doctors are correct. Because mental illnesses range in severity, different approaches are needed The more common mental illnesses are effectively treated with kindness and respect from the mental health team and the family.
    A trusted relationship w/ a doctor or professional is most neccessary. Medication can be considered, along with other well proven holistic remedies. The small percentage of very serious, w/ violent tendancies must receive immediate diagnosis and treatment, involuntarily if needed. These unfortunates must be followed for life.
    Mental illnesses are preventable. A caring and morally responsible society would insist on that, instead of lamenting on how to treat mental illnesses that, by and large, are exacerbated by family and societal dysfunction.
    Sadly, not everyone w/ severe mental illness will survive to a healthy life. It is a complicated condition which requires far more exploration into causes, than has been done. Until we take the time and money to learn it’s origins, we will suffer w/ inadequate medications, endless posturing by medical personell, ruined lives, and at best, some residential treatment centers, out-patient circles, and more stigma.
    The pain of PTSD, bipolar, depression, and schizophrenia is higher than any family or doctor can imagine. Cures do not exist,but suicide does, as real relief. Just one person’s death should be reason enough to put genius scientist’s minds to causes for prevention. Shame… 

  • Erika

    A note to DJ Jaffe and others penning similar responses – 

    DJ Jaffee and others, 

    I am one of the 5 to 9 percent of Americans who suffer from a serious mental illness. I have Schizoaffective Disorder, which combines the symptoms of Schizophrenia and a mood disorder — in my case, Bipolar Disorder. I have experienced terrifying episodes of psychosis, which include delusions, hallucinations and paranoia; I have flown into dangerous manic and mixed episodes; and I have nearly been killed by the waking nightmare that is a major depressive episode. I have had destructive rages that have led me to damage property and myself; I have struggled with chronic self-injury; and I have attempted suicide. I have been treated in psychiatric hospitals; intensive outpatient programs; and other settings. It took years for me to receive the correct diagnosis and treatment. 

    I am not a deranged mass killer in the making — even off medication, even out of treatment. Nor are the large number of other people suffering from serious mental illness, of all ages and types, that I know and love. Rather, we are students, professionals and volunteers. Most of us are compassionate, gentle, sarcastic,  stubborn, passionate and loving — and, like in the general population, some of us aren’t. Some of us function at, or even above, the level of those without mental illness, while others require intensive, wrap-around and/or residential supports. We are most similar in the fact that we are different from each other. We are not monsters, lurking in suburbia, hoarding semi-automatic weapons, waiting to strike. We are everything you are. While you may approach your comment with good intentions, the way that you, and many others, group us together as if we are all at the same place, as if we all need the same things, and as if we are somehow ‘other’, undeserving of being talked with and instead talked about, as if we cannot read what you write, only furthers the marginalization that we face on a daily basis. 

    The presence of a serious mental illness alone, even one that is untreated and even in cases where treatment is being refused, should never alone be enough to force treatment. That is the essence of discrimination and stigma — it is making assumptions and decisions about a person, including the decision to interfere with their right to self-determination, based upon a group that they are a part of. Not only is this unethical and Unconstitutional, but it is unhelpful and ineffective. By and large, those with serious mental illness respond well to the same things that everyone else does: respect, compassion, understanding and empathy. Barging into their lives, restricting their rights and waving commitment papers, is likely — as it would with anyone — to only increase feelings of resentment, mistrust, hurt and withdrawal. It is likely to increase barriers, rather than decrease. It patronizes those with serious mental illness, saying that, because of their illness, everyone else knows what is best for them. No matter the diagnosis, we must remember that those with serious mental illness are still adults, are still people. Just as with those without a diagnosis of serious mental illness, recognizing that fact, and expressing a willingness to work with them, a willingness to ask “How are you doing?” and “What do you need?” and “What can I do to help?”, is going to be the most successful. 

    When forced treatment is considered for those with serious mental illness, it must be considered the same as for those with physical illness: as a last resort and based upon the capacity to give informed consent, rather than diagnosis. In other words, if someone with Schizophrenia is refusing treatment and likely to destabilize because of that, that alone should not be enough to force treatment. Rather, that person with Schizophrenia must be assessed to fail to understand the risks and benefits of treatment. This is an approach based upon capacity, rather than one’s status of belonging to a particular group. 

    Thanks. 

    Erika

    • Marabe

      I hear where you’re coming from Erika. I wish that the ugly hand of stigma would be cut off the earth, so that people like you and me and many others could heal and live in peace, with dignity. It is no small thing to recover one’s self from mental illness, and those of us who do are very strong, loving, dedicated people-  or else it never would have got done.
      I’m in the 9% too by the standards that categorize us like a statistic for a medical journal. Always be proud of who you are. Remember that those who stigmatize can be pitied for their shallowness, vanity, cruelty, and plain old stupidity. And their fearfulness – if only they had a mental illness – then they would have to face fear and conquer it, as we have!

    • KristenKringle

      I agree, Erika, I too have been diagnosed with a serious mental illness and it was forced treatment that caused me to avoid all psychiatric treatment for over a decade. For some reason people think that if someone is psychotic they have no memory of how they were treated, and that would be a wrong assumption. Many of us do remember and not only did not find it helpful, found it incredibly harmful, increasing the distrust and making treatment even more unlikely

      Also, I disagree with the argument that people with serious mental illness, if they refuse treatment must suffer from anosognosia. Not so. The medications while they may help many people, also suck in terms of side effects. I should know because I have experienced them. Anosgnosia is a cop out and is often used by mental health professionals to dismiss the concerns of patients with mental illness.

      I recommend that people who are pro-forced treatment read Elyn Saks’ book on forced treatment.  She makes a compelling argument against using it with people who did not find it helpful. 

      I would encourage parents, mental health professionals, etc to remember that people with serious mental illness are INDIVIDUALS.  Rejection of treatment may have to do with the health care provider or the type of treatment offered.  No way I would ever set foot in a building with E. Fuller Torrey, yet I see a psychiatrist who I like very much.  He is respectful and doesn’t write my resisitance to certain medications as “anosognosia.”  I have read extensively about these medications and I am willing to take some risks but not others.  Do not lump us all together.  Also, I have committed no crimes and do not deserve forced treatment. 

      • KristenKringle

        I would also add that mental health professionals who see anosgnosia everywhere they look might want to re-examine their bedside manner.  Most patients don’t appreciate that kind of arrogant paternalistic behavior from mental health professionals. I know that when I heard these mental health professionals on t.v. and on the radio I immediately recoiled in disgust, and I see a psychiatrist.  I suspect their bedside manner is just as arrogant as they come across publicly.  They might try attracting bees with honey for a change —it might surprise them.

      • http://twitter.com/MentalIllPolicy MentalIllnessPolicy

        Thanks for your comment. FYI, Another terrific book to read is Madness in the Street by Rael Jean Isaac, or Pete Earleys own book. Type your comment here.

    • KristenKringle

      Erika, I very much appreciate your comments.  I also appreciated reading an article by a respectful psychiatrist.  It’s horrifying that those with serious mental illness are seen as a group, as potential mass murderers.  It likely does much to distance the people who do need help from ever turning to mental health professionals.  Who would want to see a mental health professional after reading the comments on the web of Jaffe and others like him? 

      I would be much more likely to listen to a psychiatrist like the author of the article who speaks respectfully about people with mental illness. I would never listen to mental health professionals who think force is the way to mental health.   And, they cannot write my opinions off as anosognosia, because I work full time and take medication.  People like Jaffe are offensive to me. I remember quite a while ago reading his comments where he encouraged family members to turn over furniture to trick the police into thinking a person with mental illness is more out of control than they are.  At the time I read his comments about turning over furniture and misleading the police, I  was not seeing a psychiatrist and was not medicated.  His comments ensured that I avoided psychiatric care for some time.  These kind of violations of peoples’ rights do not engender trust or cooperation, but it certainly fuels the antipsychiatry crowd.  I don’t cooperate when I am treated disrespectfully. 

      • DJ Jaffe

        I know you did read something purporting that I encouraged families to turn over furniture. But it is not true. It came from an article documenting how horrific the mental heatlh system is and how to get help for loved ones. Here is the quote

         “While AMI/FAMI is not suggesting you do this, the fact is that some families have learned to ‘turn over the furniture’ before calling the police. Many police require individuals with neurobiological disorders to be imminently dangerous before treating the person against their will. If the police see furniture disturbed they will lusually conclude that the person is imminently dangerous.”
        As you can see, I specifically did not endorse it, and wrote it as reporting what others have done. Unfortunately, the consumertocracy misleads rather than elucidates. Remember: Just cause something is on the internet, doesn’t mean it is true. My advice?. The best way to find out what I did or didn’t say is to read what I write, rather than what others write about me. Any questions? Just post a note on our Facebook page. Thanks.DJ JaffeExec. DirMental Illness Policy Orghttp://mentalillnesspolicy.org

    • http://twitter.com/MentalIllPolicy MentalIllnessPolicy

      Tx for post. I agree with most everything you wrote. I also fully agree that we should allow assisted treatment “as a last resort”. You go on to state something else I believe in: it should be “based upon the capacity to give informed consent, rather than diagnosis” That is technically called a lack of capacity standard. It is used to decide when someone can be medicated over objection, but most states don’t use it to allow any form of commitment. I believe that once someone lacks capacity, they should have someone appointed to help them make decisions. That decision might be to accept or reject treatment depending on circumstances. We don’t require children and those with Alzheimer’s to become dangerous before appointing a guardian but we do for people with serious mental illness. Tx for comments.

  • foreverapatient

    Dr. Jaffee said in his letter that he is pro court-ordered OUT PATIENT care for the seriously mentally ill. Whether you’re mentally ill, a family or advocate, common sense dictates that a violently acting mentally ill person needs forced hospital care.WHY? Because the alternative is jail or prison. If you have a mental illness and are not violent and not a threat, then by golly, go live your life with or without mental health treatment. Don’t concern yourself w/ being lumped in w/ the seriously mentally ill who are violent and need a llot of help. These people are suffering, and sometimes the only way to humanely help them is by force. How many times have you been thankful that you were talked out of your suicide, or assisted in your depression, or safe-guarded thru your psychotic event?
    Get over it – and stop whining about good people who are concerned about getting good treatment for the small percentage of mentally ill just like you, but treacherously violent. Speak up fo yourself, and stop making treatment issues an ‘us versus them’ thing. If you get forced into treatment and truly its not warranted, then sue. Don’t be advocating to deny others who may appreciate that treatment was forced on them at a time when they had no mind to think clearly.  

  • Marabe

    Dr. Jaffe also noted, correctly, that monies are inappropriately funded for slight non-issue mental health concerns, while real help has been taken away from in-hospital treatment for the seriously ill. I have had a serious mental illness for close to 50 years, and yes violence is a big concern for me when I am sick. When I am well, you can find me at peaceful rallies for non-violence.I work, have raised a family and contribute to my community, and have a college degree. Thank God for doctors like Jaffe, Gordon, and all that take a remote interest in the safety and welfatre of the patient. IT IS NOT A PERFECT WORLD = you’re not gonna like or agree w/ every doctor or mental health policy. Bottom line – -take responsibility for your own mental ilness – DO NOT discourage doctors and legislators from using forced treatment when it clearly can benefit the patient. I and many other valuable, contributing members of your society, RELY on some caring person(s)
    to drag. push, or pull us to a hospital when we become so sick, we don’t know we need it. I woiuld have been dead years ago , if not for forced treatments. Think twice, before you condemn.

    • KristenKringle

      Marabe, that is actually what I am arguing – we are not all the same.  Not all people with serious mental illness are about to become mass murderers.  Very few of them are, and for those that threaten violence against other people, then yes by all means lock them up and treat them.  But, if they are not, and if you listen to Jaffe and Torrey you will realize that he is not just talking about people with serious mental illness who ARE violent, they are talking about what to do with people with serious mental illness who “might” (but have shown no evidence of it) become violent – that is what is scary because that could affect everyone who just happens to have a diagnosis.

      If you read Elyn Saks’ book on forced treatment she even agrees that not all people with serious mental illness benefit from forced treatment.  Some are driven away from treatment because of force.  There are actually people in hiding right now who are under a forced outpatient treatment order, and it’s certainly not doing much to help them —it is just driving them further away. .  All I am asking is that we not all be lumped together –that we are seen as individual people.  Not all people benefit or are grateful for the forced used against them.  I for one am not.

      • KristenKringle

        Also, I don’t believe Jaffe is a doctor. He is also not an advocate for all people with serious mental illness.  He may speak for those with serious mental illness who are grateful for forced used against them, but he does not speak for me and others who feel the way I do.

        When I read Elyn Saks’ other book, what struck a chord with me is that the doctor who actually helped her was the one who did not use force, even when she was psychotic.  That is the kind of doctor I have also, and I am glad I do.

        • http://twitter.com/MentalIllPolicy MentalIllnessPolicy

          You are correct. I am not a Dr. (and am not a DJ)