Abstract
Noncompliant
behavior of patients frequently interferes with effectiveness of treatment
for a variety of medical conditions and can have serious consequences.
Most clinicians have had little training in identifying the common causes
of patients' noncompliant behavior, and clinicians have few tools to
cope with this type of behavior. The goals of this article are to define
noncompliant behavior, to discuss the most common reasons for noncompliance,
and to provide new insight into noncompliant behavior that clinicians
can use to design more effective strategies for coping with noncompliant
patients.
Introduction
Some of
the more frustrating experiences I have had as a physician have involved
patients who refuse to follow my perfectly good clinical advice. Whether
it was advice for using prescription medicine, for follow-up visits,
for important clinical tests or surgical procedures, or for making crucial
lifestyle modifications, a few patients steadfastly refuse my well-intended
prescriptions or recommendations.
Early
in my career, I assumed that these refusals just indicated a lack of
understanding; if my patients could comprehend the seriousness of their
problems and the necessity of the recommended solutions, only the most
dense and stubborn of people would fail to heed my advice. My solution,
therefore, for all noncompliant behavior (NCB) was to repeat--more emphatically--why
my recommendations were important and to reiterate my explanations and
dire predictions until I felt that the patient could comprehend and
would comply.
The frequent
failure of this approach led me, during the course of more than 25 years
in clinical medicine, to adjust my attitude and to try to understand
the causes of NCB. I am now attempting to share some of what I have
learned with other frustrated clinicians. This article arises from a
presentation I developed for a Medicine-Behavioral Medicine conference
on this topic. In preparing this talk, a Medline search revealed a dearth
of relevant articles in the medical literature. My goal is to approach
the topic in a way that speaks directly to the problems we encounter
in our daily practice and to apply a holistic and practical understanding
to the issues involved.
But first
I want to give credit where credit is due: Almost everything useful
I know about NCB I have learned from my patients themselves. The most
helpful things I have ever done with noncompliant patients have been
to ask questions, not to lecture, and to be willing to listen to what
patients say. These activities are often very difficult to do within
the time constraints of clinical practice. Sometimes I have to "suspend"
the clock and my usual clinical approach and just tell the patient that
I'm frustrated and concerned and that I need to know what he or she
understands about the disease process and problems being faced. And
then I'll just be quiet and listen as nonjudgmentally as possible.
Defining Noncompliant
Behavior
"Noncompliant
behavior" is an awkward phrase, although widely used. It conveys
what the patient isn't doing, a negative concept, rather than what the
patient is doing. I believe that were we able to sufficiently understand
our patients, their lives, what their illnesses mean to them, and how
they cope with their illnesses, every act of noncompliance would seem
to make sense--at least at some level. I know that the term "nonadherence"
has replaced "noncompliance" in some circles because "nonadherence"
is less value-laden and does not imply a rigid hierarchical relationship
between physician and patient. I have used "noncompliance"
or "noncompliant behavior" in this article because I believe
it is in the lexicon of the audience of frustrated physicians I am attempting
to address and because I believe that the tone and content of this article
explore and critique the concept of patient "compliance."
In defining
NCB, I use the following four criteria: 1) the patient's medical problem
is potentially serious and poses a clinically significant risk to length
or quality of life; 2) at least one treatment exists that if followed
correctly, will markedly reduce this risk; 3) the patient has easy access
to the treatment or treatments; and 4) the patient deviates significantly
from most patients (with similar medical problems) in degree of compliance
with medical advice, treatment, or follow-up in a way that directly
or potentially jeopardizes the patient's health or quality of life.
Few patients
fully comply with all of our recommendations. Most Type II diabetic
patients never lose much weight; many hypertensive patients forget to
take a few pills and miss a few medical appointments; some patients
with advanced cancer shun conventional (and predictably ineffective)
treatment and instead pursue alternative therapy. The NCB I discuss
here is more dramatic and more obviously damaging; for example, Type
II diabetic patients who visit their physician less than once a year,
who frequently run out of medication, and whose blood glucose levels
are always poorly controlled (with HbA1c >13%, for example)
are demonstrating NCB. Patients who have obvious (palpable) breast cancer
but who refuse surgery illustrate a different and less common type of
NCB.
Common Causes of Noncompliant
Behavior
I have
found that, similar to many other problems in medicine, NCB is caused
by multiple, often intertwined factors. For example, problems in communication
are often related to cultural issues. Any patient may be influenced
by more than one of these causative factors, and I am sure many other
factors exist that I have not yet
encountered or do not yet understand. Instead of my earlier ineffective
tactic of repeatedly hammering the same advice and information into
the resistant ears of my noncompliant patients, I found that making
the effort to understand the causes of each patient's NCB helps me tailor
an approach to removing obstacles and encouraging the patient's full
participation in their own health care.
Failure
of Communication and Lack of Comprehension
As
I have stated, early in my career I thought most NCB was caused by my
failure to communicate and thus by a patient's inability to comprehend
my advice. Patients differ greatly in levels of education, intelligence,
and language skills. An explanation of a disease process delivered in
English may be perfectly clear to a native English speaker who graduated
college but may be totally unintelligible to someone who did not graduate
from high school or who speaks English as a second language. One of
our duties as physicians is to give patients our explanation of their
health problems and our recommended solutions using terms that are clear
and meaningful to each patient. However, very little of our physician
training is designed to facilitate this vital communication. We also
lack tools and time to monitor how successfully we are communicating
with our patients. Many patients are too polite--or too embarrassed--to
speak out when their physician unintentionally confuses or mystifies
them. These patients suffer in silent bewilderment.
Physicians
are highly educated, typically have above-average intelligence, and
belong to a culture that values education and intelligence; we often
do not understand how intimidating we can be to others. Although some
of our patients may have below-average intelligence, our duty to effectively
communicate with them remains. Many years ago, I was a medical consultant
for an organization that supported independent living for developmentally
disabled young adults; many of their clients were my patients. They
were, almost without fail, wonderful patients. They looked forward to
their visits with me; they worked hard to understand what I said and
recommended; and they appreciated my attention. People who have limited
intelligence can be excellent and compliant patients.
Patients
may be unable to comprehend our explanations and advice for other reasons.
For example, progressive dementia can have an insidious onset in older
patients, who may remain well-adapted socially and whose behavior may
seem appropriate. Sometimes NCB in a patient who previously had been
compliant is the first clue to what may be a significant degree of dementia.
I now use the Mini-Mental State Examination for a newly noncompliant
elderly patient and am often surprised by poor scores.
Cultural
Issues
We
filter our understanding of life's important experiences through the
values and concepts of the culture in which we grew up. This filtering
process certainly applies to our understanding of good health, causes
of medical problems, and effective medical care. The greater the discordance
between the cultures of the practitioner and of the patient, the greater
the opportunity for miscommunication and misunderstanding. Even when
ostensibly from the same cultural roots, the physician and patient can
be divided by differences in class or education.
Clinicians
who see patients with markedly different cultural backgrounds must be
aware of the many ways cultural differences can impede successful communication,
mutual comprehension, and cooperation. Language barriers may complicate
communication even when the patient speaks English, because words used
in the English language can have slightly different definitions in different
cultures.
When faced
with a patient's apparent NCB as well as with cultural difference between
patient and physician, the physician's responsibility is to explore
possible cultural factors that may obstruct effective health care. Some
cultures value a direct and explicit communication style; others favor
a more indirect and subtle style. In some cultures, to challenge or
disagree with a physician is considered improper; therefore, a patient's
lack of agreement or understanding may lead to silence during the office
visit or passive noncompliance afterward. Culturally sensitive health
communication is an enormous issue worthy of much research and training.
"Psychological"
Issues
I
put "psychological" in quotes to emphasize that my understanding
of this term includes biological, environmental, cultural, and patient-specific
factors. Psychological issues that commonly result in NCB include denial
and depression and, less commonly, severe psychiatric illness such as
psychosis.
In this
context, denial is the process by which painful or upsetting thoughts
and issues recede from consciousness--a very common response to bad
news. Denial in mild forms is of considerable value--otherwise, we would
all be preoccupied with our problems and unable to function within our
daily life. Denial in more severe form can be crippling and maladaptive.
In my experience, denial is especially common in long-term diabetic
patients whose diabetes was either of juvenile or of midlife onset.
Good blood glucose control demands enormous effort compared with control
of signs or symptoms of other common chronic illnesses, such as hypertension.
The diabetic patient must pay close attention to diet and exercise;
monitor blood glucose levels at home, a process requiring finger sticks;
schedule frequent blood tests; and take pills, insulin injections, or
both. Contemplating these complex requirements along with the long-term
risk of blindness, kidney failure, and cardiovascular complications
may stimulate denial in many patients.
In evaluating
depression as a cause of NCB, I do not only include patients with a
clear diagnosis as defined by the Diagnostic and Statistical Manual
of Mental Disorders but also patients whose depressed mood and defeatist
attitude sabotage their ability to deal with their medical condition.
Patients who have more severe depression may engage in NCB that appears
suicidal and that may lead to an abrupt and early death, for example,
a patient with insulin-dependent diabetes who will not self-monitor
blood glucose levels and who is frequently hypoglycemic.
Patients
with bipolar disorders are often unpredictable, and their degree of
compliance varies, depending on their mood state.
Patients
who are clinically psychotic or who have thought disorders with psychotic
features present one of the greatest challenges to addressing NCB. For
example, a patient who is delusional and paranoid may refuse psychiatric
care and live independently. This patient could refuse treatment for
a serious disease, such as early-stage breast cancer. Despite enormous
effort, a physician may be unable to convince the patient of the seriousness
of the disease; in fact, the patient may stop coming to office visits
and may stop answering letters or phone calls from the physician.
Secondary
Gain
Some
patients feel rewarded for remaining sick. In my experience, the most
common reward is being classified as medically disabled: the patient
is considered unable to work or requires long-term modification of duties.
In this way, NCB (and a worsening or stationary health status) is financially
rewarded, and the patient is removed from a stressful or onerous work
situation. I believe that often this is not a conscious process, such
as deliberate malingering or premeditated self-sabotage, but instead
that subconscious positive reinforcement occurs when NCB results in
the patient continuing to be classified as medically disabled.
Patients
who receive and enjoy special attention from family members while in
poor health may engage in NCB.
Psychosocial
Stress
An
overwhelmed patient is often ineffective at self-care. Many of our patients
face complex and stressful living situations. Realities such as poverty,
long hours working in multiple jobs, difficult parenting problems, or
troubled relationships can leave people exhausted, feeling besieged,
and simply unable to cope with the added time and energy required to
fully manage a chronic illness. Feeling trapped and hopeless destroys
that sense of optimism for the future that usually helps motivate good
self-care for chronic illness.
For many
chronic illnesses, such as hypertension, noncompliant patients may feel
perfectly healthy until complications such as congestive heart failure
or stroke occur. These patients must truly believe the diagnosis and
the physician's advice, have a clear understanding of the consequences
of NCB, and develop the ability to prioritize their own needs to take
daily medication and keep regular medical appointments even while they
feel healthy--in the hope of a healthier future.
Drug
and Alcohol Dependence
People who are addicted to alcohol or drugs often fail to take care
of business in many of life's arenas and are often erratic or noncompliant
with regard to their health care. These patients often suffer from medical
complications of their addictions, such as hepatitis C or cirrhosis;
because of poor self-care, they are also prone to many other chronic
illnesses. Treating the addiction is often prerequisite to treating
comorbidities, but the denial that these patients usually have impedes
effective medical care. Stress and disorganization in the lives of many
addicted patients--as well as health problems--create a formula for
massive NCB and poor health outcome.
Recommendations
The next
time one of the patients in your practice engages in NCB, take a minute
to think about what may be causing this behavior. Ask questions: Does
the patient understand the health problem (or the consequences of NCB)
or have suggestions on how self-care behavior could be improved? Using
the general categories I have suggested--and any of your own creation--develop
a differential diagnosis for the cause or causes of the patient's NCB.
As with many complex medical problems, a deeper understanding of the
roots of the problem can suggest steps toward its solution. Discussing
the case with a colleague may help generate a fresh perspective and
a new approach.
Most important,
I suggest that you consider NCB a challenge--not a failure. In a planned
future paper on this topic, I will present solutions and some practical
tools, with case examples, to help deal with noncompliant behavior.
Acknowledgment
Kate
Scannell, MD, reviewed the manuscript.
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