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Medication non-compliance
by Agnes Hatfield  (A NAMI Founder)

One of the most frustrating problems faced by families is their relative's
failure to adhere to the medications that have been prescribed. Although most
people suffering from mental illnesses receive considerable benefit from
taking medications, a sizable percentage choose to drop them at some point in
their illness. Once medications have been discontinued, patients often become
psychotic again, create a great deal of turmoil for themselves and their
families, and often cycle back into the hospital.

This period of destabilization can result in a serious setback to the
progress that the patient has made when properly medicated. As their
behaviors become increasingly troublesome to others, these people risk
alienating their support systems, and they jeopardize the scarce resources
that have been arranged for them. Most families would go to almost any length
to ensure that their relatives remain compliant with their medications.
Unfortunately, there is no simple remedy for this baffling problem. The
reasons for electing not to take medications are many and complex. We will
examine some of these reasons with the expectation that families can better
understand their particular relative's behavior. With  better understanding
of the situation, families may then be more successful in devising strategies
for dealing with the problem.

Not all noncompliant people choose to reject their medication; some just
forget to take them. It is generally known that most people who are supposed
to be taking medications, whether mentally ill nor not, tend to forget from
time to time. It is not surprising that men and women with mental illnesses
frequently forget, for they may be suffering considerable cognitive confusion
much of the time. Families cannot safely assume that their relative will be
dependable at first; therefore families may need to insist to the doctor that
they be involved in their relative's treatment. They need to know their
relative's drugs, including the correct dosages, their risks and benefits,
and their possible side effects in order to monitor them properly.

When nonadherence to medications is a matter of forgetting, rather than a
deliberate decision to avoid taking them, coping with the situation should
not be too difficult. Members of the family can recall strategies that they
have used to remember their medications and share them with the patient.
Often that means integrating the taking of medication into the usual routines
of the day: getting up, going to bed, eating, shaving, brushing teeth, and so
forth. Medications can be placed on the dinner table along with the vitamins
and drugs that other members must take routinely. A digital watch with an
alarm can be useful, especially if medication is prescribed three or four
times daily.

It is important to find ways to simplify medication taking as much as
possible. If the doctor concurs, medications may be taken in larger dosages
and at just one time of the day. Sometimes it helps to package tablets in
individual envelopes or other containers labeled as to date and time of day
for taking. In this way, families can periodically check on the remaining
packets to determine if the right amount has been take. In some cases,
families may have to dispense medications routinely for a period of time. The
best solution for many patients who do not manage their medications reliably
is to use injectable medications, such as Prolixin Dacanoate, which needs to
be given only every three or four weeks. Some patients prefer this solution
so that they do not have to think of mental illness and medications so often.
 
 It is understandably difficult for people to continue to do something to
themselves that produces discomfort. Medications used to treat mental illness
are known to have an array of potentially unpleasant side effects. They range
from restlessness and pacing to excessive sedation, tremor, dry mouth,
constipation, impotence, weight gain, missed menstrual cycles, and many
others. We recommend that families become familiar with the potential side
effects of their relative's medications.

Good psychiatrists frequently evaluate both the effectiveness of the
medication and the side effects produced. Families should encourage their
relatives to bring to the doctor's attention any discomforts they are having.
The doctor may change the medication or the dosage, prescribe another
medication to counteract side effects, or offer practical suggestions for
alleviating the discomforts.

Families can also assist by finding imaginative ways to help their relative
cope. For example, they can make it possible for the individual to relieve
restlessness by suggesting a place to pace or move around that does not
disturb others. They can provide juices, sugarless candy, or gum to keep the
mouth moist, and they can recommend the use of sunscreens for those whose
medications make them sensitive to the sun. These are just a few examples;
inventive families can think of many more. Even so, most patients will still
suffer some side effects. Many of these are of limited duration. Finally,
families can help their relative weigh the discomforts of the medications
against the serious disruptions in their lives if they cease taking them.

Some families say with great exasperation, "He won't take his medication. He
won't even admit that he has a mental illness." The patient may insist that
nothing is wrong with him or her. Professionals call this "denial." We should
not be surprised that people with mental illnesses want to convince
themselves and others that they do not have such an unfortunate disease as
mental illness. Such an acknowledgment could be frightening and painful.
Taking medication would serve as an admission that they do, indeed, have a
highly stigmatized disorder that can be long-lasting and disabling.

Sometimes patients can be persuaded to take medication even though they are
still denying the illness. They often feel that something is wrong, but they
see it as a lesser problem. They may say that they are nervous, not sleeping
well, not getting along with others, or are having difficulty concentrating.
We may help them see medications as useful for these conditions and sidestep
the issue of mental illness for the time being. Eventually, of course, these
men and women come to terms with the reality of their mental illnesses in
ways that are acceptable to them. Once they have reached this understanding,
the issue of medications should be less of a problem.

Sometimes resistance to medication is a battle for autonomy and control.
People with mental illnesses may feel that their lives have been so
controlled by doctors, nurses, and families that controlling the intake of
medications is the only power they have left. If this is the case, probably
the more they are pressured to take medication, the more resistant they may
become. Families may need to be as discreet as possible in giving reminders,
and sometimes it may be wise to back off entirely for a while. Families need
to recognize that in the final analysis they cannot force medication. The
patient has the ultimate control over whether he or she will or will not
swallow the prescribed tablets.

What families should do, according to Dr. Ronald Diamond, Professor of
Psychiatry at the University of Wisconsin, is put the medications in the
context of their relatives' lives (Diamond, 1984). They can help their
relatives see that medications can help them exert control over some things
which are important to them. Families need to understand what ways their
relatives want their lives to be better. Some of these people may feel that
they want to be less anxious and confused, sleep better, eliminate the voices
they hear, feel more comfortable in strange places, or read or watch
television with more concentration. Other may be hoping to return to school
or prepare for work. Often taking medication is an important step in
achieving what they want to happen.  Families can help their relatives see
how taking medication fits into their personal lives in concrete ways. Once
patients have been fully stabilized and reliably compliant, some prescribing
physicians may allow them some latitude in temporarily raising or lowering
dosages to suit immediate needs. These adjustments can add to patients'
feeling of control over their lives.

Sometimes there are people in the person's environment with strong biases
against taking medications who are influential in the patient's rejecting
them. Some medical mental health professionals see medications as unnatural
or as interfering with the patient's rehabilitation. Medication may be seen
by them as being opposed to other forms of treatment. They may feel that
therapy or rehabilitation are better alternatives (Diamond, 1984).   Families
should inform the doctor if they feel that other service providers are in
some way disparaging the use of prescribed medications. Diamond recommends
that these professionals be approached in terms of what these medications can
and cannot do. He feels that there is more to be gained by discussing the
concrete behaviors of a particular patient that might improve with
medications than there is in entering into abstract arguments as to whether
medications are good or bad. The staff may be persuaded to observe a client's
trial with medication to note if symptoms can be decreased and the goals of
their program better achieved.

Still other people in the patient's environment may have prejudices about
medications. Relatives of the patient may feel that medications are harmful,
addictive, or unnecessary. Families should do all they can to see that those
who are in frequent contact with the ill member have an accurate
understanding of medications and the part they play in treatment. Families
face a difficult dilemma when another patient seeks to convince their
relative that medications are harmful. The family is unlikely to have contact
with that individual and, in  any case, could probably not be influential. In
the last analysis, the only safeguard against such persuasive behaviors is
for the patient to fully understand his or her own medications together with
their risks and benefits. A well-developed program of patient education is
needed so that all patients are authorities on their own treatments.
Otherwise, they can easily become victims of other peoples's biases and
prejudices.

Sometimes schizophrenia, with its heightened sense of personal significance,
the extra energy of a manic episode, or the desire to evade the
responsibilities of a well person, may interfere with a person's willingness
to learn to manage the illness with medications. If people's delusional
worlds indicate that they have special importance to the universe, they
naturally hesitate to trade this state for the ordinary world in which they
feel no special significance. Even people who experience being persecuted by
the F.B.I. or other powerful forces may feel a sense of being special which
they hate to relinquish.

It may be difficult for the family to determine if the patient is in some way
"choosing" to stay ill. The argument that the world of mania or the world of
psychosis is more real and to be preferred to the one others experience may
be difficult to answer. Families usually find that it is futile to argue
about whose reality is the correct one. They find it more fruitful to express
the hope that their relative will elect to give up the world of delusion that
their friends and families cannot share and choose to live in a world that
reunites them with important others.

Some men and women who have mental illnesses find still other reasons for
rejecting medication. They may have followed all the recommendations made by
treatment teams only to find that their lives were still seriously
compromised by the illness. They still have low levels of energy and drive,
are often plagued by anxieties and depression, unable to hold a job, and
forced to live at a poverty level. They see no hope for love and marriage,
and the scourge of stigmas is everywhere. Things may not seem much better
when they are on medication than when they are off. Families must continually
search for ways to help their relatives overcome their sense of hopelessness
and despair. They can remind them  of the progress that has already been
made, and they can credit them for the courageous struggles that have brought
them this far. They can point out the positive things in their lives, and
note that many people with these disorders have improved significantly over
time. Finally, they can remind their relative that considerable research is
underway to understand the illness better and to develop more effective
treatments.

Failure to adhere to prescribed medication continues to baffle many families.
We hope that by knowing some of the reasons for this counterproductive
behavior, families will be less baffled and more able to detect the  reasons
for their particular relative's noncompliance. When they understand their
relative's attitudes toward medications, they may plan strategies for dealing
with them more successfully. Nevertheless, we must recognize that some cases
of noncompliance are going to be difficult to overcome.
When families feel that they have exhausted all acceptable options, there may
be still other possibilities, although they may seem less desirable at first.
If the only alternative open to families is to witness constant cycling into
delusional behavior, they may want to keep open to almost any possibility.
Diamond (1984) feels that it is sometimes all right to offer a reward for
taking medication. This might take the form of offering money, special
treats, or something else that the patient wants.  He also feels that efforts
at coercion are sometimes warranted. Families may refuse their relatives the
right to live at home or even visit as long as he or she is off medication.
The hope is that doctors and families working together can somehow keep
patients on medications long enough for them to experience their benefits.
Once this is accomplished, better cooperation with treatment is likely.
Finally, we must recognize that there may be nothing that the family can do
for the time being.

Family members may need to detach themselves emotionally as much as possible
and wait until a situation presents itself in which the family is willing to
keep a variety of options open. Change is often more likely during times of
crisis, and families often have to wait for a crisis in order to bring about
change. If the patient causes enough trouble for the community, gets into
trouble with the law, or becomes a danger to himself or others, there may be
an opportunity to intervene. Families understandably dread a long period of
waiting for the situation to get worse in order for their relative to get
treatment. People do get hurt during a crisis, property gets lost or damaged,
and families suffer untold anguish. But no one has found an alternative for
these most reluctant patients. Fortunately, most families and patients do
weather this experience, and most patients eventually learn that taking
medication is better than living with the consequences of not taking it.

 


 

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