A MOTHER'S STORY
We have a lovely daughter who is now close
to 50 years old. She's intelligent, a college graduate, and a hard
worker. She's attractive and personable, with a good sense of humor.
Or at least she was once like this.
But she has a brain disease which is slowly making her life a tragedy
because it has disabled her brain's ability to think rationally
and make commonsense, responsible decisions. Her brain is damaged
and simply cannot function properly.
While this brain disease is serious, it IS treatable. That's the
good news.
But our daughter refuses to get the treatment --- that's the bad
news.
The reason she refuses treatment is not because she is contrary
and not because she is "in denial," but because she does
not recognize that she even HAS the disease. This inability to recognize
one's own illness is called "anosognosia," from the Greek
word that means "without knowledge" or "unawareness
of illness," and it is one of the common symptoms of our daughter's
illness.
What is the brain disease that our daughter has and what are its
symptoms? The disease is called schizophrenia and it frequently
causes its sufferers to experience hallucinations and to hear voices
which sometimes tell the sufferer to do bizarre and/or violent things.
It often makes the victim hostile and aggressive. And, a great many
sufferers experience anosognosia. But the worst symptom of all is
the fact that it disables the brain's ability to make logical and
realistic judgments.
Why don't we simply take her to the doctor and insist that he give
her medication? Well, since she's over 18, we no longer have the
right to make decisions for her and therefore we are legally prevented
from doing this unless she agrees to allow us to do it.
Why don't we talk to her doctor and explain the problems she's having
and her need for forced (if necessary) treatment? Because the Privacy
laws prohibit her doctor from talking with us unless she gives her
permission, and of course that won't happen because, due to her
anosognosia, she insists that there is nothing wrong with her.
Furthermore, the law states that, if she so chooses, she can simply
decide not to treat her illness. She has the right to be hostile,
to hear voices, and to have hallucinations...even to be violent
if she chooses. And if she hurts someone in her violent outbursts,
then her lawyer can just plead "insanity." [Though with
a recent Supreme Court decision, she may still go to jail.]
But there is what seems to me to be a BIG FLAW in this scenario,
and it is this: She is being allowed to use an obviously defective
brain to make these decisions. Does that make sense? Would you want
someone with a defective brain making decisions for your life and
well-being? For the care of your children? I think not.
I have no problem with someone deciding to refuse treatment for
an illness - if that someone has a brain capable of logical, rational
thought and judgment. But if that someone is using a disabled brain
to make the decision, then I think the archaic laws governing patient
rights need to be modified to reflect this situation, not only for
the sake of the ill person, but for the sake of the people who are
or may be affected or injured by the patient's resultant behavior.
It is absurd to claim that a shizophrenic's rights and civil liberties
have been violated by requiring that he or she be treated, either
willingly or unwillingly. We do not hesitate to insist that a baby
receive a shot for tetanus, even though the baby may struggle and
protest loudly, because the treatment is for the baby's own good.
The baby's age has little to do with this; IT IS THE FACT THAT THE
BABY IS NOT MENTALLY ABLE TO UNDERSTAND THE NEED FOR THE TREATMENT
AND THEREFORE SOMEONE ELSE MUST INSIST HE HAVE IT.
While civil liberties are very important and patient privacy also
is very important, it is clear that, in the case of folks with some
MENTAL illnesses, the law needs to be revised to recognize the unique
nature of these illnesses. This is surely a case of "one size
does NOT fit all."
Several revisions of the law need to be made:
1. We need to be permitted to insist severely mentally ill persons
receive treatment, whether they want it or not, and appropriate
follow up to ensure compliance. To not do this is to fail these
folks -- utterly!
2. We need to permit some closely involved family member to provide
information about the mentally ill person to police and doctors,
because the mentally ill person commonly is not truthful when questioned.
Please note: the mentally ill are NOT stupid, and they do learn
how to "work the system" to avoid treatment. It is extremely
frustrating for concerned relatives -- fathers, mothers, sisters
etc. -- to not be allowed to contribute information to doctors trying
to treat a patient who can't or won't provide truthful information.
Please support making changes in our laws so as to enable proper
treatment of the severely mentally ill.
Elizabeth Brown [pseudonym]
Frustrated mother of a severely ill daughter with schizophrenia.
Copied from www.Psychlaws.org - Treatment Advocacy Center, E-News
- of Friday, May 18,2007.
THE LAW
2004 CALIFORNIA SUPREME COURT - Letters
to the Editor published in Schizophrenia Digest - Fall 2004, titled:
CALIFORNIA COURT MADE WRONG CALL: "As the volunteer spokesperson
for the Families of Untreated Mentally Ill Persons, I am totally
confused and saddened by the California Supreme Court ruling that
mentally ill inmates cannot be forced to take anti psychotic drugs.'"
In 1990 The U.S. Supreme Court in Washington
vs,. Harper allowed involuntary medication of prisoners for the
safety of inmates and jail employees. The decision of the California
Supreme Court contradicts constitutional law and deprives some very
sick inmates the opportunity to take the same medicines that help
the other 50 per cent of mentally ill population to function better
in society.
http://www.druglibrary.org/SCHAFFER/legal/l1990/Harper.htm
2006 U.S. Supreme Court WEAKENS INSANITY
DEFENSE - See the details of the 2006 U.S. Supreme Court rule on
"insanity defense."
www.psychlaws.org/PressRoom/statementMaryZdanowiczTreatmentAdvocacy
CenteronSupremeCourtrulinginClarkv.Arizona.htm
NAMI ADVOCATE, Fall 2006, article MENTAL
ILLNESS IS NOT A CRIME, by Jim Randall, Vice President NAMI San
Francisco Valley, states: "The recent U.S. Supreme Court ruling
that allows states broader lee-way in limiting an insanity defense
saddened many in the mental health community.
Although the court's judgment is undoubtedly sound legally, it once
again points to the tragic lack of understanding about mental illness
in our nation...Future generations will see us through the lens
of history and ask how we dared be so ignorant."
CONSEQUENCES OF NON-TREATMENT
In 1989 E. Fuller Torrey M.D. published Surviving
Schizophrenia. In the third edition of this book, on Page 263 he
mentions: "Lack of Insight." Impaired insight has been
noted to be a symptom of schizophrenia for almost two centuries..."
This book started the quest for help for our dear ones. Dr. Torrey
is the Director of the Treatment Advocacy Center, "a national
nonprofit dedicated to eliminating barriers to the timely and effective
treatment of severe mental illnesses", and the organization
that provides us with updated information on the care of all mentally
ill persons. www.psychlaws.org
2003 THE AMERICAN PSYCHIATRIC ASSOCIATION
PRESENTS - "A VISION FOR THE MENTAL HEALTH SYSTEM" - April
3, 2003.
"Mandatory Treatment - (Page 4) What about the seriously and
persistently mentally ill (SPMI) patients who deny that they are
ill, are hospitalized multiple times, and are potentially dangerous
if not in treatment? .... Involuntary hospitalizations occur in
every state based on criteria that emphasize dangerous to self or
others or grave disability. Sadly, involuntary hospitalization is
often not available for patients who are not dangerous but who urgently
need comprehensive evaluation and intensive treatment that is not
possible outside a hospital. .... Mandatory outpatient treatment
is a useful tool and a preventive intervention for those who may
not presently meet criteria for inpatient commitment but need treatment
to prevent relapse or deterioration that would predictably and rapidly
lead to their qualifying for admission. More than 40 states and
the District of Columbia have commitment statutes permitting mandatory
outpatient treatment...
1995 NAMI - INVOLUNTARY COMMITMENT POLICY
See: www.NAMI.org - Under - Involuntary Commitment it's says: "After
a great deal of study, the NAMI Board of Directors in 1995 approved
a policy on involuntary commitment and court-ordered treatment…"
2006 10-27-06- E-NEWS, TREATMENT ADVOCACY
CENTER.
MULTIPLE SCLEROSIS, MENTAL ILLNESS, AND FORCED TREATMENT.
PSYCHIATRIC SERVICES, October 2006
"Editor's Note: This response by Dr. Harriet P. Lefley is to
a commentary from the August issue of Psychiatric Services authored
by William A. Anthony, Ph.D., the executive director of Boston University's
Center for Psychiatric Rehabilitation. In that piece, Anthony compares
his treatment and care for multiple sclerosis with that of people
with severe mental illnesses. He explains that his experiences on
the other end of the doctor-patient relationship because of his
MS have impelled him to advocate for the "abolition of force
in the severe mental illness community."
Dr. Lefley’s letter says: "Bill Anthony has been a wonderful
pioneer in psychiatric rehabilitation and in promoting dignity,
respect, and the recovery orientation in the treatment of mental
illness. His multiple sclerosis (MS) is painful news to all of us
who admire him (1). But as he notes, MS is not mental illness. Anthony's
family does not have to contend with his denial of illness. He does
not accuse them of having MS rather than himself. He does not vehemently
reject medical treatment for this disease that he denies having.
He does not have frightening delusions or hallucinations, refuse
food because it is poisoned, waste away and decompensate in front
of their eyes while family members stand helplessly by, unable to
make him accept treatment. Nor does he threaten or attempt suicide.
On the contrary, he cooperates with his doctors, takes medications,
and is a rational, willing participant in his own recovery."
…
"It seems to me that sometimes a mystifying
dishonesty pervades this discussion. A noble ideological principle
too often is coupled with an unconscionable indifference even to
acknowledging the conditions that typically generate forced treatment.
Psychotic and self-destructive behaviors can lead to terrible social
consequences and may affect many people other than those who are
ill. Children, siblings, spouses, and aging parents are among those
deeply affected and psychologically harmed by untreated psychosis
not to mention the damaging effects to the persons themselves."
See below for additional information.
Harriet P. Lefley, Ph.D. - Dr. Lefley is professor in the Department
of Psychiatry and Behavioral Sciences, Miller School of Medicine,
University of Miami.
2005 -On December 28, 2005, a letter to the
Families from Henry A. Nasrallah, M.D. Professor of Psychiatry,
Neurology & Neuroscience and Associate Dean, University of Cincinnati
College of Medicine, says: "Schizophrenia is a brain disease
where there is a neurobiological loss of the cognitive ability to
be aware and recognize that one's thought and perceptions are false.
It is one of the symptoms of the disease itself. Fortunately, it
is reversible with treatment in most cases. I completely agree with
the call for involuntary treatment of persons who develop psychosis
in order to repair their brains and restore their ability to think,
perceive and live normally.
Adding: "There is now a substantial literature that a long
DUP [DURATION OF UNTREATED PSYCHOSIS] is very harmful to the brain
and can worsen the outcome for an individual with schizophrenia
due to progressive loss of brain tissue."
THE BIOLOGICAL NO FAULT
NATURE OF MENTAL ILLNESSES
2001 From a description of topics in the
book "The Executive Brain" - Frontal Lobes and the Civilized
Mind - Exploring the Dynamic Complexities of the Human Mind by Elkhonon
Goldberg, PH.D: "If other parts of the brain are damaged, neurological
illness can result in the lost of language, memory, perception or
movement, yet the essence of the individual, the personal core usually
remains intact. All this change when illness strikes at the frontal
lobes. What is lost then is no longer and attribute of your mind.
It is your mind, your core, yourself. ... "even subtle damage
to the frontal lobes produces apathy, inertia, and indifference."
2003 TIME magazine, January 20, 2003, "Your
Mind - Your Body," by Michael D. Lemonick: "The disembodied
voices of schizophrenia and the feelings of worthlessness and self-hatred
that accompany depression, although they seem to be based in reality,
are no more than distortions in brain electrochemistry. Researchers
are learning how these distortions arise, how to lessen their severity
and, in some cases, how to correct them."
2001 - TREATMENT ADVOCACY CENTER WEB SITE:Why
they refuse care and what is Lack of Insight: According to Xavier
Amador, Ph.D., who spoke at the convention of NAMI in Washington,
D.C., in July 2001: Anosognosia, "unawareness of illness,"
is a syndrome commonly seen in people with serious mental illness
and some neurological disorders.A growing body of evidence points
to the fact that for many people with serious mental illness, lack
of insight is a medically based condition.About half of the people
with schizophrenia and bipolar disorder may not be getting the treatment
they need because of a brain deficit that renders them unable to
perceive their illness."People will come up with illogical
and even bizarre explanations for symptoms and life circumstances
stemming from their illness."People with this syndrome do not
believe they are ill despite evidence to the contrary, said Amador,
who is director of psychology at the New York Psychiatric Institute
and professor of psycholo
gy. Psychiatric News Sept.7, 2001.
Dr. Amador's wrote the book I Am Not Sick- I Don't Need Help that
teaches the families how to treat the person that refuses anti-psychotic
medicines. (This book is translated to Japanese, Chinese, Spanish
and French.)
ALTERNATIVES
2006 - E-NEWS, TREATMENT ADVOCACY CENTER.
MULTIPLE SCLEROSIS, MENTAL ILLNESS, AND FORCED TREATMENT.
From above letter to the Editor by Dr. Harriet Lefley - "Are
there alternatives to involuntary hospitalization? The United Kingdom
has early-intervention teams that deal with people in their first
episode of psychosis and that even attempt early detection. There
are also high-risk and prodromal teams, subdivided into early intervention
and prodromal intervention, as well as continuing care teams with
specific criteria for "ultra high-risk subjects" and modes
of intervention (2). With community outreach teams, skilled mental
health workers can usually convince a frightened person to accept
treatment. Services can be offered in the home before the need arises
for forced treatment in a hospital setting."
1977 UNITED NATIONS - ESCR Document Database
- Standard Minimum Rules for the Treatment of Prisoners.
...."B. INSANE AND MENTALLY ABNORMAL PRISONERS - 82. (1) Persons
who are found to be insane shall not be detained in prisons and
arrangements shall be made to remove them to mental institutions
as soon as possible.... 83. It is desirable that steps should be
taken, by arrangement with the appropriate agencies, to ensure if
necessary the continuation of psychiatric treatment after release
and the provision of social-psychiatric after-care."See:
http://shr.aaas.org/thesaurus/instrument.php?insid=124
The Families believe that the community and
those affected by untreated psychosis will benefit if the Federal
and States legislators approve, fund and implement the Assisted
Outpatient Treatment AOT laws already in effect in most states.
If in doubt, please check the five years report published by New
York’s State on the results of the implementation of Kendra’s
Law: http://www.psychlaws.org/BriefingPapers/BP18.
Miami, December 2006.
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ARE PEOPLE WITH UNTREATED
MENTAL ILLNESS IN-DENIAL OR BLIND?
Please pass the word around.
To the families, legislators, community, mental health providers
and scientists and legal experts.
”Mind and body, psychologists and neurologists now agree,
aren't that different. ... The disembodies voices of schizophrenia
and the feelings of worthlessness and self-hatred that accompany
depression, although they seem to be based in reality, are no more
than istortions in brain electrochemistry"(1). The increasing
number of persons with mental illness that after taking medicines
are now in recovery, proves the biological nature of mental illness.
The Spanish speaking members of Families of People with Untreated
Mental Illness (www.lackofinsightmi.org ) have met weekly for 14
years to share experiences that center mainly on how to obtain care
for our relatives who don't feel sick and refuse medicines. We know
that the persons able to acknowledge their mental illness and/or
substance abuse have higher possibilities of normalizing their lives,
while the half who refuse medicines remain in constant psychotic
crisis, needing hospitalizations and always at risk of committing
suicide, becoming homeless or incarcerated. To disregard this issue
means to waste half of the efforts invested by scientists in finding
newer medicines and better ways to treat chronic, recurrent and
no -lethal mental illness, discoveries that may otherwise never
reach a large number of persons who need them the most.
Our long lasting dilemma has forced us to “think outside of
the box” and challenge the old legal claim that non- compliant
patients are "In Denial" when they say: “I Am Not
Sick - I Don't Need Help.”(2). Denial requires the "previous
knowledge" of being mentally ill, which we suspect they never
had.
We believe that they are psychologically “blind” to
the fact that what they feel, think and imagine is in error, and
blind also to the realization that they suffer from schizophrenia
or bipolar disorders. This is understandable because the symptoms
of psychosis (voices, extreme fears or sadness, grandiosity, etc)
are so real for them that when we insist that "feelings are
not facts, they lie and deceive us” (3) and that they only
need to take medicines, we insult their intelligence and integrity.
The “knowing, but in-denial" theory conveniently shifts
the blame to the victims for "not wanting" to get better;
excuses society for ignoring their predicament; antagonizes the
sick person towards their families that insist they recognize the
illness; makes a legal matter of a medical issue, and gives the
victims the same civil rights as sane persons: the freedom to refuse
care for conditions they know they have, which means that, ultimately,
they will remain untreated.
In the 1970's, when the medical treatment of mental illness was
in its infancy and the involuntary commitment laws were modified,
everyone assumed - as many still do today - that it was impossible
for persons not to know that they were not "God” or “persecuted
by the FBI"- but that they suffered from a non-treatable symptom
of psychosis. The legal experts copied what we know about criminals,
that they deny culpability when they know very well that they are
guilty, and determined that the persons with mental illness do the
same or were in-denial when they claimed they were not sick and
indignantly refused medicines. The experience of many years shows
a big difference, however: people in conflict with the law are seeking
benefits when they deny culpability, mentally ill persons in-denial,
seek only to remain blind to the nightmare of their illnesses.
We are asking the scientists to evaluate our hypothesis and investigate
- not only the validity of the “In Denial” definition
but also why half of persons with chronic and recurrent psychosis
accept medical care and the other half does not. Also, if the scientific
findings agree that denial or blindness is a common and, so far,
un- treatable symptom of mental illness, it is imperative that we
find out how to treat or eliminate it.
After witnessing how the medicines make miraculous differences in
the lives of our relatives, and learning of the fears some have
of becoming again psychotic and not recognizing it - we recommend
the implementation of the Involuntary Commitment and Court Ordered
Policy adopted by NAMI in 1995. See:www.NAMI.org under FIND ask
for: Involuntary Commitment.
Most states and the U.S. Supreme Court (Washington vs. Harper) already
allow court ordered procedures similar to Outpatient Assisted Treatment,
OAT, www.psychlaws.org for a limited number of chronic, "dangerous"
mentally ill individuals who refuse care. We are requesting that
the experts study the possibility of expansion of the implementation
of these laws to include our “not dangerous” younger,
chronic and severely psychotic, non-compliant relatives who live
in the community, as well as all those who are incarcerated and
in need of involuntary mental health care, adding the follow-up,
counseling and supervision required to maintain compliance when
in the community. This change would likely be their only chance
to live a relatively normal life.
Since the most severely affected persons are not able to or inclined
to ask for help - we request your support in disseminating this
information. Thanks,
(1)Michael D. Lemonick, “Your Mind-Your Body”, TIME
January 20, 2003.
(2)Xavier Amador, PH.D. “I Am Not Sick-I Don't Need Help!”
2000- Vida Press. Translated to Spanish, Japanese and Chinese
3) Dr.Abraham A. Low - “Mental Health Through Will Training”
1950, www.Recovery-Inc.org
From: "The Executive Brain - Frontal Lobes and the Civilized
Mind" by Elkhonon Goldberg.
2001 -Oxford University Press:
"A patient with anosognosia may be severely impaired, yet he
will have no inkling of it and will continue to claim that everything
is fine. This is different from being "in denial," which
is assumed that the patient has the capacity to comprehend his own
deficit but "chooses" to look the other way. Following
frontal lobe damage the cognitive capacity to insight into one's
own condition is genuinely lost."
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