Posts tagged psychotic
Posts tagged psychotic
Loser! You messed this up again! You should have known better!
It’s that know-it-all, bullying, mean-spirited committee in your head. Don’t you wish they would just shut up already?
We all have voices inside our heads commenting on our moment-to-moment experiences, the quality of our past decisions, mistakes we could have avoided, and what we should have done differently. For some people, these voices are really mean and make a bad situation infinitely worse. Rather than empathize with our suffering, they criticize, disparage and beat us down even more. The voices are often very salient, have a familiar ring to them and convey an emotional urgency that demands our attention. These voices are automatic, fear-based “rules for living” that act like inner bullies, keeping us stuck in the same old cycles and hampering our spontaneous enjoyment of life and our ability to live and love freely.
Some psychologists believe these are residues of childhood experiences—automatic patterns of neural firing stored in our brains that are dissociated from the memory of the events they are trying to protect us from. While having fear-based self-protective and self-disciplining rules probably made sense and helped us to survive when we were helpless kids at the mercy of our parents’ moods, whims and psychological conflicts, they may no longer be appropriate to our lives as adults. As adults, we have more ability to walk away from unhealthy situations and make conscious choices about our lives and relationships based on our own feelings, needs and interests. Yet, in many cases, we’re so used to living by these rules we don’t even notice or question them. We unconsciously distort our view of things so they seem to be necessary and true. Like prisoners with Stockholm Syndrome, we have bonded with our captors.
If left unchecked, the committees in our heads will take charge of our lives and keep us stuck in mental and behavioral prisons of our own making. Like typical abusers, they scare us into believing that the outside world is dangerous and that we need to obey their rules for living in order to survive and avoid pain. By following (or rigidly disobeying) these rules, we don’t allow ourselves to adapt our responses to experiences as they unfold. Our behavior and emotional responses become more a reflection of yesterday’s reality than what is happening today. And we never seem to escape our dysfunctional childhoods.
The Schema Therapy Approach
Psychologist Jeffrey Young and his colleagues call these rigid rules of living and views of the world made by the committee in our heads “schemas.” Based on our earliest experiences with caregivers, schemas contain information about our own abilities to survive independently, how others will treat us, what outcomes we deserve in life, and how safe or dangerous the world is. They are also responsible for derailing intimate relationships.
Young suggests that schemas limit our lives and relationships in several ways:
A woman we will call Diana has a schema of “Abandonment.” When she was five years old, her father ran off with his secretary and disappeared from her life, not returning until she was a teenager. The pain of being abandoned was so devastating for young Diana that some part of her brain determined she would live her life in such a way as to never again feel this amount of pain. Also, as many children do, she felt deep down that she was to blame: she wasn’t lovable enough, or else her father would have stuck around; a type of “Defectiveness” schema.
Once Diana developed this schema, she became very sensitive to rejection, seeing the normal ups and downs of children’s friendships and teenage dating as further proof that she was unlovable and her destiny was to be abandoned. She also tried desperately to cover up for her perceived inadequacies by focusing on pleasing her romantic partners and making them need her so much that they would never leave her. She felt a special chemistry for distant, commitment-phobic men. When she attracted a partner who was open and authentic, she became so controlling, insecure and needy that, tired of not being believed or trusted, he eventually gave up on the relationship.
Diana’s unspoken rule was that it was not safe to trust intimate partners and let relationships naturally unfold; she believed that if she relaxed her vigilance for a moment, her partner would leave. In an effort to rebel against her schema, she also acted in ways that were opposite to how she felt; encouraging her partner to stay after work to hang out with his friends, in an attempt to convince herself (and him) that she was ultra-independent. This led to chronic anger and dissatisfaction with her partner.
Diana did not understand her own role in this cycle. Diana (and her partner) needed to understand how her schemas resulted in ways of relating to herself and others that are repetitive, automatic, rigid, and dysfunctional. By acknowledging and connecting with her unresolved fears and unmet needs, Diana could become more flexible and allow her partner more freedom without feeling so threatened.
The schema concept helps us understand how early childhood events continue to influence adult relationships and mental health issues, that we need to recognize their influence and (with professional help, if necessary), begin to free ourselves.
Six Things You Can Do Right Now
The tools and tips below will help you begin to identify your core schemas and take some corrective actions.
2. In close relationships, think about your partner’s background, beliefs and behaviors to see whether they fit into one of the schema patterns identified here. Think about the times when your communication gets derailed and you both get angry or defensive. What schemas may each of you be bringing to the table and how may they be setting each other off. For example, a partner who has an Entitlement schema may act in needy and demanding ways that trigger the partner with an Emotional Deprivation schema to feel uncared for.
3. Pay attention to when you or your partner are getting triggered. You may notice feelings of anger or helplessness, thoughts that contain the words “always” or “never,” and feelings of tension or discomfort in your body. You may feel reactive and tempted to withdraw or say something impulsively.
4. Practice the STOP technique when you are triggered during a conversation with your partner. This is a practice from the Mindfulness-Based Stress Reduction course developed by John Kabat-Zinn. STOP what you are doing, TAKE a breath, OBSERVE what you are doing, thinking, feeling and what your partner is doing, thinking, feeling. Think about whether your schema is calling the shots and if you would like to change tracks. Then PROCEED with a more mindful response.
5. At a time when you are both calm, sit down with your partner and try to figure out the cycle that happens when both you and your partner get reactive to your schemas. Decide how to communicate that this is happening in the moment and call a break.
6. Train yourself in the skill of cognitive flexibility. Deliberately think about other ways to interpret your partner’s behavior that are not consistent with your schema? Perhaps he is withdrawn because he had a hard day at work. Are you personalizing things too much?
Schemas are more likely to be triggered when your emotional needs are not being met. Take some time alone to reflect on what these needs might be. Then practice some healthy ways of taking care of your own needs for love, security, comfort and so on. Harness your inner “Healthy Adult” to proactively take care of yourself so you’re less likely to feel deprived and reactive.
Even though schizophrenia is one of the most severe forms of mental illness, nearly 40 percent of people with the disorder say they’re happy, new research contends.
Researchers at the University of California, San Diego, surveyed 72 schizophrenia patients, ranging in age from 23 to 70, living in the San Diego area, and found that 37 percent said they were happy all or most of the time.
Their happiness wasn’t related to the length or severity of their mental illness, to their mental or physical status, or to factors such as age and education. Instead, their happiness was associated with positive mental and social characteristics such as optimism, resilience and lower stress levels, the researchers said.
The findings are valuable because these positive traits can be taught to many people, said the authors of the study, which was published online Aug. 18 in the journal Schizophrenia Research.
"People tend to think that happiness in schizophrenia is an oxymoron," senior author Dr. Dilip Jeste, a professor of psychiatry and neurosciences, said in a university news release.
"Without discounting the suffering this disease inflicts on people, our study shows that happiness is an attainable goal for at least some schizophrenia patients. This means we can help make these individuals’ lives happier," Jeste added.
By way of comparison, about 83 percent of people without schizophrenia said they were happy most or all of the time. And none of the people without schizophrenia said they were never or rarely happy, compared with about 15 percent of those with the mental disorder.
"People with schizophrenia are clearly less happy than those in the general population at large, but this is not surprising," study lead author Barton Palmer, a professor in the university’s department of psychiatry, said in the news release.
"What is impressive is that almost 40 percent of these patients are reporting happiness and that their happiness is associated with positive psychosocial attributes that can be potentially enhanced," Palmer added.
The study was funded, in part, by the U.S. National Institute of Mental Health (NIMH).
Scientists came to the conclusion after speaking with 60 schizophrenics 20 came from California, 20 from Accra, Ghana and 20 from Chennai, India In America, voices were intrusion and a threat to patient’s private world In India and Africa, the study subjects were not as troubled by the voices. The difference may be down to the fact that Europeans and Americans tend to see themselves as individuals motivated by a sense of self identity. Whereas outside the West, people imagine the mind and self as interwoven with others and defined through relationships.
People suffering from schizophrenia can often hear imaginary voices so terrifying that they are left traumatized.
One American patient described the voices as ‘like torturing people, to take their eye out with a fork, or cut someone’s head and drink their blood.’
A study has now found that these voices can be shaped by culture, with Western cultures experiencing far more disturbing psychotic episodes.
Schizophrenia is a severe brain disorder that can cause people to hear ‘voices’ that other people don’t hear. It affects about one per cent of the global population over the age of 18.
Many people in Western cultures have reported hearing voices claiming other people are reading their minds, controlling their thoughts or plotting to kill them.
In Africa and India, however, these hallucinatory voices appear as harmless and even playful, according to the study by Stanford University in California.
While there’s no cure for schizophrenia, this study suggests that therapies urging patients to develop relationships with their imaginary voices could prove useful.
As part of the study, Professor Tanya Luhrmann interviewed 60 adults diagnosed with schizophrenia; 20 each in San Mateo, California; Accra, Ghana; and Chennai, India.
Overall, there were 31 women and 29 men with an average age of 34, who were asked about their relationship with the imaginary voices.
While many of the African and Indian subjects registered largely positive experiences with their voices, not one American did.
Instead, the U.S. subjects were more likely to report experiences as violent and hateful.
For instance, they spoke of their voices as a call to battle or war – ‘the warfare of everyone just yelling.’
The Americans mostly did not know who spoke to them and they seemed to have less personal relationships with their voices, according to Professor Luhrmann.
But among the Indians in Chennai, more than half heard voices of kin or family members commanding them to do tasks.
'They talk as if elder people advising younger people,' one subject said. That contrasts to the Americans, only two of whom heard family members.
The Indians also heard fewer threatening voices than the Americans – several heard the voices as playful, as manifesting spirits or magic, and even as entertaining.
Finally, not as many of them described the voices in terms of a medical or psychiatric problem, as all of the Americans did.
In Accra, Ghana, where the culture accepts that disembodied spirits can talk, few subjects described voices in brain disease terms.
When people talked about their voices, 10 of them called the experience predominantly positive; 16 of them reported hearing God audibly. ‘Mostly, the voices are good,’ one participant remarked.
The difference may be down to the fact that Europeans and Americans tend to see themselves as individuals motivated by a sense of self identity, said Professor Luhrmann.
Whereas outside the West, people imagine the mind and self as interwoven with others and defined through relationships.
In America, the voices were an intrusion and a threat to one’s private world – the voices could not be controlled.
However, in India and Africa, the subjects were not as troubled by the voices – they seemed on one level to make sense in a more relational world.
Still, differences existed between the participants in India and Africa; the former’s voice-hearing experience emphasized playfulness and sex, whereas the latter more often involved the voice of God.
'The difference seems to be that the Chennai and Accra participants were more comfortable interpreting their voices as relationships and not as the sign of a violated mind,' the researchers wrote.
The research, Professor Luhrmann observed, suggests that the ‘harsh, violent voices so common in the West may not be an inevitable feature of schizophrenia.’
The findings may be clinically significant, according to the researchers and adds to research that shows specific therapies may alter what patients hear their voices say.
'Our hunch is that the way people think about thinking changes the way they pay attention to the unusual experiences associated with sleep and awareness, and that as a result, people will have different spiritual experiences, as well as different patterns of psychiatric experience,' Professor Luhrmann said.
Recent years have seen an influx of numerous studies providing an undeniable link between childhood/ chronic trauma and psychotic states. Although many researchers (i.e., Richard Bentall, Anthony Morrison, John Read) have been publishing and speaking at events around the world discussing the implications of this link, they are still largely ignored by mainstream practitioners, researchers, and even those with lived experience. While this may be partially due to an understandable (but not necessarily defensible) tendency to deny the existence of trauma, in general, there are also certainly many political, ideological, and financial reasons for this as well.
Many have called for the trauma and psychosis fields to join forces. So many valuable findings have come out of the trauma field that could inform practitioners and lay people alike in understanding how one might come to be so overwhelmingly distressed and behave in such seemingly strange ways (see Read, Fosse, Moskowitz, & Perry, 2014, for an informative overview of how trauma affects our bodies). Studies looking at how the non-disordered brain adapts to chronic stress, how cumulative adverse events affect how people perceive and react to the world around them, and how many creative ways people come up with to defend against their own awareness of their distress all can help others to understand the un-understandable. More importantly, the trauma field has shown time and again how trauma-informed care can help a person slowly heal from horrid life experiences.
Yet, the trauma and dissociation field often goes to great lengths in an apparent effort to draw a decisive line in the sand between “real” trauma “disorders” and “schizophrenia.” This largely is done by insinuating that “dissociation” is trauma-based and explains the bizarre behaviors of so many distressed individuals labeled with “borderline” or “dissociative identity disorder”, while some cognitive or brain-diseased factor contributes to “real” psychosis. Somebody with “schizophrenia” may have experienced trauma, but it is largely irrelevant to the present distress. Is this true? Is there any actual evidence for this beyond ideology? It may be helpful to look at the overlap and separation between “dissociation” and “psychosis” to get a better understanding.
Brief History of Trauma Research
Over 100 years ago, Pierre Janet became the first major figure to identify and treat the vast array of the effects of trauma. In fact, he considered almost all “psychopathology” to be the result of childhood trauma and dissociation (Janet, 1919/25). Under the large umbrella term of “hysteria”, Janet identified the following symptoms: hallucinations in all senses, fugue states, amnesia, extreme suggestibility, an odd disposition, nightmares, psychosomatic and conversion symptoms, reenactments, flashbacks, paranoia, subjective experiences of possession, motor agitation, mutism, catatonia, thought disorder (or disorganized speech), and/or double personalities (Janet, 1907/1965). He believed that treatment consisted of a phase-based approach involving stabilization, trauma processing, and recovery. Fatefully, Janet’s use of hypnosis provided the main basis for his eventual expulsion from the psychiatric community. He responded to his exile by pointing out that the medical establishment denied the existence of trauma and its effects, to the point of focusing too much on the physiological and biological domain.
For the next 8 decades or so, the mental health field became more and more narrow in its focus on and recognition of trauma to the point of neglecting it completely in the more biological domains. It was not until the late1970′s, when a massive influx of veterans gained political clout and women began to speak out and be heard, that trauma was once again recognized as a major factor in extreme emotional distress. This also was the time when the DSM became psychiatry’s new bible; and so, while trauma was once again recognized, it was also separated into narrowly defined disorders that included PTSD, adjustment disorders, and dissociative disorders (including multiple personality disorder, as it was then known). It was then that the modern-day lines were drawn.
So what are people talking about when they speak of “dissociation”? Well, not too many people agree on this. It also appears as though the more professionals attempt to come to a consensus on what this term means, the more they do so in an effort to delineate it from any possible association with “psychosis”; their attempts to define dissociation are done by disassociating.
Wikipedia defines dissociation (in the broad sense) as: “an act of disuniting or separating a complex object into parts.” I do not believe that many mental health professionals, particularly dissociation researchers, would entirely disagree with this definition. Rather, it is the interpretation of this meaning that is a hotly debated topic within psychiatry (a general term I use to describe the entirety of the mental health field). In general, it may be used to describe a process, a multitude of symptoms, specific disorders, a division of the personality (or lack of integration), and/or a psychic defense. Many believe that it refers to disconnection from one’s thoughts, feelings, environment, self, others, etc. The term is also used to refer to a process of entering a trance-like state or extreme detachment. Most agree that dissociation lies on a continuum from “everyday dissociation” (i.e., losing track of time while driving, becoming absorbed in a book) to severe dysfunctional dissociation (i.e., “multiple personalities”). Lately, it appears as though trauma researchers and practitioners are interpreting dissociation as solely meaning a separation of identity states or ego functioning that is based in trauma and is clearly understandable (i.e., not psychosis).
If nobody agrees on what it means, then why do we really care? Because the political implications and resulting effects on treatment options are directly related to how one interprets this meaning. We can see by looking at the DSM how this might work…
DSM and all its Fancy Terms
Akin to many religions throughout time, psychiatry makes up many technical terms and then create circular and eccentric definitions to confuse lay people into believing that mental health issues can only be dealt with by an educated professional. Putting this political maneuvering aside, I would like to focus for a moment on key terms related to the topic at hand: trauma, dissociation, dissociative symptoms, psychosis, psychotic symptoms, dissociative disorders, and schizophrenia.
Trauma: Trauma is technically defined as an event that provokes death-related fears in an individual. It is also agreed upon that trauma is defined by the person’s response to such an event, rather than the event itself. But, what of the child whose parents are cold and over-protective? Or the child who is “only” bullied verbally? Or the child who is chronically invalidated? Or poverty? Or the person in existential crisis? Are these not a form of “trauma”? Certainly, they are shown to be chronically stressful which, physiologically, is not any different than “trauma” defined in the DSM-sense. Although it is understood that trauma is subjective, the DSM insists on narrowly defining it anyways.
Dissociation: As stated previously, very few professionals in psychiatry agree on what this term means. Instead of just saying “absorption”, “feeling unreal”, “feeling one’s surroundings are not real”, “lack of integrated sense of self”, or “detachment” (all considered in different circles as varied forms of dissociation), scholars instead argue over its meaning until it has no meaning at all. Often, it is an ideological term that is used to say “trauma” vs. “not trauma”, whether this is explicitly acknowledged or not. Therefore, when one’s “symptoms” are considered non-dissociative, the assumption generally tends to be that they also are not trauma-based.
Dissociative symptoms: Although dissociative symptoms are acknowledged as existing in a multitude of different DSM categories, they mostly are usurped by the dissociative disorder classifications. In this case, as I will discuss in a moment, dissociative symptoms often seem to take on the meaning of “not psychotic” rather than having any distinct meaning in and of themselves.
Psychosis: Psychosis is another technical term with no precise meaning. It tends to refer to a state in which a person appears to not be aware of or in touch with consensual reality. This can be for 5 minutes or 5 years, but the term itself is non-time specific. In practice, it tends to be used when the professional comes to a point where they say “I don’t understand you or agree with your interpretation of reality.”
Psychotic symptoms: Most people tend to think that psychotic symptoms clearly refer to things such as hearing voices, seeing visions, having strange beliefs, or disorganized thinking/speech. However, “psychotic symptoms” specifically refers to symptoms of psychosis. What is psychosis? Having psychotic symptoms. If you don’t have psychosis, then you may have “psychotic-like” symptoms or “quasi-” insert what you like here. What makes these symptoms psychotic-like instead of truly psychotic? Whether or not your therapist understands you.
Dissociative disorders: While there are 5 dissociative disorders, the one that is most intertwined with the idea of psychosis is dissociative identity disorder (DID). People who might meet the criteria for DID often experience what is inarguably the core of the term “dissociation”; namely, having a fragmented sense of self. In addition, they also experience periods where they cannot remember large gaps of time. This amnesia is certainly not an experience that is universal to many or even most individuals suffering extreme states; however, the other experiences common in DID are definitely non-specific to this classification. These include: hallucinations in all senses, incoherence, bizarre beliefs, impaired reality testing, lack of awareness of the present moment, paranoia, and paranormal experiences. However, these are reframed as: hearing voices of an “alter”, body memories, flashbacks, intrusions of trauma and/or “alters”, beliefs attributed to “alters”, not being grounded, and hypervigilence. These words do not necessarily indicate any difference in the lived-experience, but rather a difference in how psychiatry interprets the experience. And who wouldn’t rather say “I have body memories and intrusions” then “I have hallucinations and delusions”?
Schizophrenia: The category of schizophrenia, and all its sister disorders, is one that is assumed to be a largely biological, genetic brain disease. What differentiates it from DID? No one seems to be able to define where this distinction lies, but those in the dissociative disorder field will state that the difference is based on the existence of “delusions” and/or “thought disorder”. A delusion, of course, is a belief that society deems unacceptable. Yet, nobody seems to be able to explain where the line is separating a delusion from an acceptable belief. More specifically, nobody will explain what the difference is between believing “I have a bunch of people living inside of my body who are not me” (DID) and “I am God” (psychotic). But questionnaires that measure dissociation use this very distinction to say whether one has dissociation or not. And then they say “delusions are not related to dissociation” because they just ruled out dissociation by the fact that a person did not endorse an interpretation of their experience that the questionnaire makers deemed dissociative.
“Thought disorder” has been convincingly described by Richard Bentall as a problem in communication, rather than an indication of any true cognitive impairment (Bentall, 2003). Yet, the theory adopted by mainstream psychiatry remains that “thought disorder” is a neurological disease. And so, if one is considered to have DID, any indication of thought disorder is instead interpreted as “intrusions” or “rapid-switching” of altered identity states. Only those with “real” psychosis have a “real” thought disorder.
On the other hand, psychosis researchers solve the problem by simply saying DID just does not exist. People who present with altered identity states and memory problems (not attributed to an actual neurological problem) are considered as just “borderline” or “attention-seeking”. I honestly cannot think of much that is worse than experiencing such emotional turmoil and distress to the point of a break-down and then being told I am making it up for attention. But, then, of course, that is just my perspective.
In spite of these ideological battles, studies still have shown that individuals meeting criteria for schizophrenia endorse a greater level of dissociative symptoms than any other clinical group, discounting PTSD and dissociative disorders (Ross, Heber, Norton, & Anderson, 1989). Approximately two-thirds of individuals diagnosed with DID who are hospitalized also meet structured interview criteria for schizophrenia or schizoaffective disorder (Ross, 2007), 25-50% of anybody diagnosed with DID has received a previous diagnosis of schizophrenia (Ross & Keyes, 2004), and approximately 60% of those diagnosed with schizophrenia meet criteria for a dissociative disorder (Ross & Keyes, 2004). Up to 20% of individuals diagnosed with DID have been found to exhibit communication styles indicative of thought disorder (Putnam, Guroff, Silberman, Barban, & Post, 1986), and levels of dissociation are highly correlated with thought disorder (Allen, Coyne, & Console, 1997). Bizarre explanations for anomalous experiences are not rare in those diagnosed with DID; indeed, one study discovered that 41% of individuals diagnosed with DID have been found to believe they were possessed by demons, and 36% experienced possession by some other outer power or force not attributed to part of the self (Ross, 2011). In addition, the original concept of ‘schizophrenia’ (as it was discussed by Kurt Schneider, Eugen Bleuler, Harry Stack Sullivan, and Harold Searles) appears to emphasize presentations indicative of a dissociative disorder.
On the other hand, it has been found that dissociatively detached individuals are not necessarily chronically psychotic and can function at a high level (Allen et al., 1997). Individuals diagnosed with DID are often able to maintain reality testing despite experiencing “psychotic” phenomena (Howell, 2008). Another difference is that persons diagnosed with DID also report higher levels of dissociation, and more child, angry, persecutory, and commenting voices (Dorahy et al., 2009; Laddis & Dell, 2012). They also generally report a higher rate of more severe childhood trauma than any other clinical group (Putnam et al., 1986).
What Does This all Mean???
It is often purported that “delusions” and “schizophrenia” are not dissociative, when using the narrow definition of dissociation; when dissociation means dis-integration of identity. I would argue that when one is so distressed so as to be labeled as having delusions or schizophrenia, the person has experienced such a high level of dissociation so as to have a completely shattered identity; dis-integration to the point of disintegrated oblivion. But, this is not acknowledged as dissociative, and so then is considered somehow something completely different and separate.
I do not believe it is possible to separate psychosis and dissociation; to me this is like attempting to separate a headache and a fever when I have the flu. Where does the headache begin and the fever end? And should I focus on “treating” my headache, fever, or maybe the virus that infected me and is creating an interconnected process of events in my body? While psychosis and dissociation are not the same thing, I believe that one does not have psychosis without dissociation or dissociation without psychosis. Often the difference simply boils down to: who can frame things the way that the professional wants to hear or agrees with.
Certainly not all those who experience altered identity states experience strange beliefs, voices, or incoherence, but most do. Not all those who experience extreme states also experience altered identity or memory loss, but some do. These experiences are not separate, even if they are different. Although one may appear more reality-based and “dissociative” while another may appear more out of touch with reality and incomprehensible, I believe both stem from the same underlying process of attempting to deal with overwhelming life experiences. And this is where “treatment” should be focused.
Of course, this belief comes with the caveat that some presentations of emotional distress (whether it is psychosis, depression, dissociation, or any other term or category one might like to think of) are dietary, biological, and/or neurologically based. These are not psychological or psychiatric problems, then, and should be dealt with in the medical realm. All individuals suffering from extreme states should evaluate their diet, exercise, and overall physical health; when these are shown to be a non-issue, however, it should be assumed that some difficulty with life has led to whatever the person is suffering through in the present rather than blaming a faulty brain or neurochemicals without any evidence to back up such assertions.
I do not have all the answers. But, I do ask why it is that mental health professionals do not start with just saying what they mean? We can talk about altered identity states, memory loss, feeling unreal, not knowing what is real or not, being terrified of others, etc. Mental health professionals can own the fact that “I do not understand this person” instead of taking this as equivocal evidence of some brain-diseased process of “psychosis.” Each of these experiences do not make a distinct disease. People are complex. People do not fit in nice, neat boxes. People suffer, and when they do this is not necessarily a disease. People adapt to unbearable life circumstances in a number of complex ways that cannot be categorized, no matter how much psychiatry insists that it can. And none of these labels can tell anybody much of anything about a person beyond the stereotypes and confirmation biases they elicit.
At the end of the day, extreme states and anomalous experiences are terrifying; they are terrifying to the people experiencing them and to all those around those people. Doctors are human beings (much as many might like to state otherwise) and they too often act out of that fear. Certainly, nobody wants to get labeled with being psychotic, and there is benevolence in the efforts of those who try to save many from being so doomed. Being recently labeled with “schizophrenia” appears to be enough to increase the likelihood somebody will commit suicide (Fleischhacker et. al, 2014).
Instead of trying to understand people through labeling and insisting on enforcement of an authoritarian dictation of what the experience “really” is, perhaps psychiatry can listen to those who have actually been there. The Hearing Voices Network has given us tools to work with voices and other anomalous experiences; the National Empowerment Center has given us tools on how to work with crises and extreme states; I am working to try to get first-person perspectives on how to work with altered identity states and memory loss; so many individuals (most famously Marsha Linehan) have given us tools on how to work with self-harm and suicidality.
Why does psychiatry then continue to insist on abiding by a broken and invalid system of disease mongering? Why do we not allow the experiencer to make sense of their experience through their own framework? Why must we be so evangelical and insist that they see things our way? There is NOTHING that truly, scientifically can say that one diagnosis is more “accurate” than another. All of these diagnoses are just checklists of behaviors- there is nothing that anybody “has” and until some biological test shows otherwise than nobody can claim that there is. What matters is being with a person in their world where they are at and understanding the MEANING behind the experience, not attempting to define the experience itself in a way that makes sense to us. This is nothing more than social control and perpetuation of the status quo, not science.
Even the most biologically-based medical doctor knows that treatment can only be effective when the underlying disease is recognized and addressed. In my opinion (and it is only that), the underlying “disease” is trauma, overwhelming emotions in reaction to an un-understandable and terrifying world, and/or fear of death/annihilation. If this is the issue, and logically then the issue that needs to be “treated”, then why do we spend so much time splitting hairs over differentiating what behaviors or beliefs belong in what technical categories? In the heart of the Hearing Voices Network, why are we not focusing all of our time on understanding what happened to the person, not what’s wrong with the person?
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Disclaimer: The views presented here are constructed from my biased interpretation of the vast literature associated with the various topics discussed. This is based on my on-going dissertation work as well as personal and clinical experiences that influence my views. In no way is any of this meant as a criticism towards any individual organization or researcher. I have a great appreciation for the work done in both the trauma and psychosis fields, and recognize that we all cling to views that help us make sense of the world. I just hope that one day we might be able to move past some of these partialities and work towards improving options for people who are in extreme distress without further traumatizing them in the process.
This article’s references can be found HERE.
These dangerous medications are prescribed at an alarming rate without the patient’s consent
When Patricia Thomas, 79, went into a Ventura, Calif.,nursing home with a broken pelvis, the only prescriptions she used were for blood pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.
Thomas, a former executive assistant, had been given so many heavy-duty medications, including illegally administered antipsychotics, by the Ventura Convalescent Hospital in November of 2010 that she could no longer function. If one drug caused sleeplessness and anxiety, she was given a different medication to counteract those side effects. If yet another drug induced agitation or the urge to constantly move, she was medicated again for that.
"Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went into the nursing home. She could dress and feed herself, walk on her own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”
A Ventura County Superior Court judge agreed that Levine had a legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and hopefully we can replicate this nationwide,” says attorney Kelly Bagby, senior counsel for AARP Foundation Litigation.
A national problem
Tragically, what happened to Patricia Thomas is not an isolated incident. According to Charlene Harrington, professor of nursing and sociology at the University of California, San Francisco, as many as 1 in 5 patients in the nation’s 15,500 nursing homes are given antipsychotic drugs that are not only unnecessary, but also extremely dangerous for older patients. The problem, experts say, stems from inadequate training and chronic understaffing, as well as an aggressive push by pharmaceutical companies to market their products.
"The misuse of antipsychotic drugs as chemical restraints is one of the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today," says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. "When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous."
Kickbacks to doctors
Last November, in what the U.S. Department of Justice called “one of the largest health care fraud settlements in U.S. history,” Johnson & Johnson and its subsidiaries were fined more than $2.2 billion to resolve criminal and civil charges because of their aggressive marketing of drugs, including antipsychotics, to nursing homes, when they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly population. The corporation also allegedly paid kickbacks to physicians, as well as to Omnicare, the nation’s largest long-term-care pharmacy provider. Omnicare pharmacists were recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.
Back in 2009, Eli Lilly did the same thing with its antipsychotic Zyprexa, marketing to older people in nursing homes and assisted living facilities, federal prosecutors charged. In a settlement, the company agreed to pay $1.4 billion. “This case should serve as still another warning to all those who break the law in order to improve their profits,” Patrick Doyle, special agent in charge of the Office of Inspector General for the U.S. Department of Health and Human Services in Philadelphia, said at the time.A report released in March by the inspector general of Health and Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”Antipsychotic drugs are intended for people with severe mental illness, such as patients with schizophrenia or bipolar disorder. As such, they carry the FDA’s black-box warning that they are not intended for frail older people or patients with Alzheimer’s or dementia. In those populations, these drugs can trigger agitation, anxiety, confusion, disorientation and even death. “They can dull a patient’s memory, sap their personalities and crush their spirits,” according to a report from the California Advocates for Nursing Home Reform.
Kept in the dark
What’s more, the law requires “informed consent” by a patient or, if that is no longer possible, by his or her family before such drugs are administered. Yet advocates say that, all too frequently, this doesn’t happen. Levine, for example, says she didn’t know about all her mother’s medications until she transferred her mom to another facility. “When I saw the list of what she’d been given, I freaked out. I was upset and angry, in tears,” she recalls.
How can such things happen? One explanation is that many facilities don’t have enough properly trained staff: Most of the patient care in nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if you want a license to be a hairdresser, you need 1,500 hours of training,” Harrington points out.What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.The result of all this can be so-called behavior problems among patients — which is the explanation nursing homes cite for giving patients unnecessary antipsychotic drugs, according to the U.S. Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.
"There was a push by drug manufacturers, claiming these medications work for seniors when they knew, in fact, that it doubled their risk of death," Chicotel says.
CMS, which oversees the nursing homes that receive funding from federal programs, says it has been working to correct deficiencies in nursing facilities, including the inappropriate use of medications. The agency achieved the goal of reducing the inappropriate use of antipsychotic drugs by 15 percent over a recent two-year period, and hopes to get to a 30 percent reduction in the next few years, according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000 patients are still receiving the drugs inappropriately. Hamilton acknowledges that more needs to be done, but lack of funding from Congress is making even the most preliminary work difficult.
A better way
Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.
She cites an example of a male patient who was spending his days in a noisy nursing home activity room. One day, he grew more and more agitated and tripped an aide with his cane. To calm him down, the staff took him to his private quarters. Over the following days, his behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.
"The staff initially thought he had become violent and needed an antipsychotic," Phillips recalls. "But they ultimately realized that the cacophony in the activity room was stressing him out. Caregivers inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior." Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.
Putting patients first
Another success story is the Beatitudes facility in Phoenix, which dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.
The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler approach, acknowledging that we are not in charge of a person’s life — they are. In allowing them to retain their dignity, and adopt a comfort level of care, we’ve had better outcomes,” says Alonzo. That paradigm shift has not increased operating expenses, or required a higher staff-to-resident ratio. “We discovered that better care was better business,” Alonzo says.
For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”
Jan Goodwin is an award-winning author and investigative journalist for national publications.