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The Consequences of No Treatment or Delayed Treatment
Approximately 40% of people with schizophrenia are unable to understand
that they have the disorder, because the part
of the brain that is damaged by schizophrenia is also responsible
for self-analysis. It's important to note that the person is not "in
denial" (which suggest that through education alone the person might
understand that they have schizophrenia). With schizophrenia, you are
frequently asking the sick brain to diagnose itself, which may simply
be impossible. For this reason, involuntary or assisted treatment
(a general term used to describe different ways that a person with severe
mental illness may be forced against their wishes to accept treatment)
may be necessary as a last resort.
It's important to know that there are many other reasons why someone
with schizophrenia may not cooperate with treatment. Some of the most
common reasons (supported by research within schizophrenia populations)
include:
- Denial and Lack of Insight into Mental Illness
- Medication side-effects
- Possible solution -
Always communicate with your psychiatrist if you are troubled by
side effects - there may be other medications or dosages that you
can try. Keeping a medication
journal where you document how you react to every medication
and dosage you try can be a useful tool for you and your psychiatrist
as you work together to find a treatment regimen that is right for
you. In general, the atypical
antipsychotics tend to cause fewer side effects than the typical
(older) ones, although they still have some serious side effect
considerations. Weight gain and sedation are among the most troublesome
for most consumers.
- Delusional beliefs about medication (e.g., that it
is poison)
- Cognitive deficits, confusion, disorganization
- Possible solution - Some types of
psychotherapy
interventions (for example, cognitive-behavioral therapy) have
shown promise in alleviating some of the cognitive symptoms of schizophrenia.
We recommend reading this online handbook on Dealing
with Cognitive Disfunction, which provides very comprehensive
and understandable information on how cognition is affected in people
with schizophrenia, how medications may help or hinder cognition,
and what non-pharmacological approaches might help improve cognitive
function.
- Poor doctor-patient relationship - this is cited by recent research as a key factor that influences a patient's attitude towards treatment.
- Fears of becoming medication-dependent or addicted
Some of these situations can be changed for the better with effort and
patience. However, for poor insight, sometimes Assisted Treatment is a
last-resort option to get someone the help they desperately need.
Who might benefit from assisted treatment,
and how does it help?
For the 40-50% of people with severe mental illnesses such as schizophrenia
who have only partial or no awareness due to the biological nature of
the disease in their brains, a form of assisted treatment (if possible)
may be a way to get them the treatment that will help to alleviate their
symptoms. After starting an effective treatment, many people start to
regain some insight, and may decide to continue the treatment voluntarily.
Getting assisted treatment for an adult who does not consent to it is
not easy in the United States. Every state has their own legal statues
(review state-by-state
committment laws) detailing the conditions under which someone may
be involuntarily committed to a hospital facility, which is one of the
more extreme forms of assisted treatment. See our FAQ
section on this topic for more information about when and how someone
might think about involuntary committment for a loved one.
There are other forms of assisted treatment (described below), all of
which are also governed by individual state statutes dictating when, how,
and by whom they can be enforced
Forms of Assisted Treatment, and how they
are beneficial
Out-patient Committment: This is a court-order requiring
a patient to comply with a set treatment as a condition for release
from a hospital. The penalties for non-compliance are usually set by
the court. According to research conducted by Dr. E Fuller Torrey, outpatient
committment has been shown to reduce hospital readmission rates by 50-80%.
A meta-analysis of assisted treatment results reported that subjects
who were bound to out-patient committment generally had fewer hospital
days, were more reliable in keeping treatment appointments and taking
medications, and had reduced violent behavior.
Conditional Release: Similar to outpatient committment;
gives the hospital the authority to judge whether a patient is adequately
complying with his/her treatment. If the patient is non-compliant, he/she
may be returned to the hospital involuntarily.
Representative Payee: This is a fairly common situation
for someone recieving government aid in the form of SSI or SSDI. The
court assigns a representative (may be a family member or other primary
caretaker) to handle and distribute the checks to the ill person. That
representative may decide to make treatment compliance a condition for
receiving the monthly checks. Research has shown that people with mental
illnesses who's finances are handled by a representative payee have
lower rates of homelessness and victimization, fewer number of hospital
days, and higher rates of treatment participation.
Guardianship: This is when the court appoints someone
else to permanently make decisions for the ill person. However, it can
be very difficult to get a legal adult declared incompetent, which is
a requirement to obtain guardianship.
Benevolent coercion/Court-ordered treatment: This
may be an option if someone with a mental illness has been arrested.
The judge may offer that person the option of complying with a treatment
program rather than serving jail time. This is probably more likely
if the ill person is tried in a mental health
court, which are becoming increasingly more common in the United
States.
Assertive Case Management: This is a program that
is only available state-wide in a few locations (Michigan, Delaware,
Wisconsin, Rhode Island, and New Hampshire are the states we know about).A
team of professionals manages the treatment of a client, ensuring compliance
through various methods (including, in some cases, home visits). The
team may also be appointed as representative payees. Learn
more about Assertive Case Management from NAMI.
Treatment programs in residential facilities: If the
ill person is living in a residential program,
treatment compliance may be used as a requirement to maintain residency
eligibility. For example, some programs might choose to enforce treatment
compliance by taking the stance that their housing is limited to persons
with psychiatric disorders, and an individual who chooses not to be
in treatment is implying that he/she does not have such a disorder.
Therefore, this individual should not qualify for housing reserved for
people with these specific diseases.
Psychiatric Advance Directives
(PAD): These are legal documents in which the person
with the brain disease sets out the treatment he/she wishes to be enforced
if he/she should become incompetent. Some form of PAD is available in
every U.S. state, however, not all states have explicit statutes standardizing
PAD documents, activation, and treatment. In most states, the PAD falls
implicitly under the larger category of Advance Directives. Problems
may arise during crisis situations because there are no standards dictating
when a PAD should become active, exactly how far a treatment team should
honor PAD instructions, or what to do if a PAD contains wishes that
are judged not to be in the best interests of the patient. Check with
your state to determine any laws governing Advance Directives in general,
and PADs in particular. Make the document as specific as possible -
it may help to hire an attorney to oversee the process.
Usually, a PAD will appoint a representative (maybe a family member
or primary caretaker) who will assume temporary responsibility for making
treatment decisions while the ill person is incompetent. The document
may also state the conditions under which the person considers themselves
incompetent - this may be defined by the appearance or severity of certain
symptoms, or by conditional situations (for example, spending over $1000
on a credit card by someone with manic-depression might be used as a
signal that the person has entered a manic episode, and is unable to
make good treatment decisions). In other cases, a doctor, psychiatrist,
or a court may be the ones to decide when a person is incompetent, thus
activating the directive.
In order to make a psychiatric advance directive work for both the
ill person and the family, the agreement must be made well ahead of
a crisis, when the person is in a competent state of mind. Moreover,
any medical professional or hospital staff who might be involved in
future treatment mandated by the directive should be made aware of its
existance in advance, and be provided with copies.
See
more information, and sample PAD documents, from the Bazelon Center
for Mental Health Law
More reading about Psychiatric Advance Directives:
Information about Poor Insight, and Resources
to Help Overcome It:
- From the Schizophrenia.com Frequently Asked Questions Guide:
- How families have helped when those
who have schizophrenia won't see a doctor
- Information and Briefing Papers from the Treatment Advocacy Center:
- Legal Resources for involuntary treatment and commitment
- First Hand Accounts from consumers and family members who have
dealt with a poor insight situation
- Recommended Books for Families and Friends
Common Consequences of Non-Treatment of Schizophrenia
News Stories on the Consequences of Untreated Schizophrenia
Argument For Involuntary Treatment
The Risks of Avoiding Involuntary Treatment
Additional Information on Involuntary Treatment
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Early Schizophrenia Diagnosis and Treatment Centers
