Psychology of Chronic and Terminal Illness

Regression: Return to a more childlike pattern of behavior and feeling.

• A universal human reaction to illness, not ever 'regress'. Sick patients wish to be comforted, cared for, and freed from responsibility of adult life.
• In moderation, it is adaptive; problematic when it becomes extreme.
• All patients do not regress in the same fashion.

Regression and Dependency

Some are over dependent- want "feeding" on demand, constantly push nurses' call button in the hospital or telephoning the physician frequently (outpatients), complain petulantly about their care, and avoid sharing responsibility.

Have excessive need to control their medical care and get into struggles over less critical elements of their care.

May have tantrums over getting their way, tend to be perfectionistic and intolerant of any irregularities, disarray, or tardiness.

Some just have a need to feel powerful and admired. Tends to be aggressive and narcissistic, oblivious to the needs of other patients around them.

May be sexually provocative especially if the illness has assaulted their sense of self-esteem and power (e.g. acute paraplegia, myocardial infarction).

Some find the regression comfortable (ego-syntonic), some others are uncomfortable (ego-dystonic).

Sources of Regression and Dependency

Moderate regression is adaptive.

• In the face of illness, adults hope to receive the nurture, reassurance, and care provided by parents during childhood.
• Patients who regress behaviorally to an extreme often have pre-existing psychopathology (personality disorders).

When a patient is too comfortable with regression, it could be an indication that they have received significant secondary gain from previous illness.

Serious deprivation in childhood (e.g., emotionally absent or dysfunctional parents) hence care of physicians and nurses is the only nurturing experiences that they have.

Intervention for Regression and Dependency

• Avoid scolding or shaming patients.
• Explain to the patient that feeling more dependent or needy is part of an expected reaction to illness. Patients who made repeated, unreasonable, or unrealistic demands may require behavioral limit setting.
• Take steps to mobilize the patient physically and emotionally to participate in treatment and rehabilitation.

A defense mechanism that reduces anxiety and conflict by blocking consciousness of thoughts, feelings, or facts that an individual cannot face.

• Common in medically ill, varies in its timing, strength, and adaptive value.
• Some patients are aware of what is wrong with them but consciously suppress the knowledge by avoiding thinking about or discussing it.

Others cope with the threat of being overwhelmed by their illness by unconsciously repressing it and thereby remain unaware of their illness.

Denial may accompany and could be a symptom of a major psychiatric disorder (e.g., schizophrenia); outright denial also occurs in the absence of other significant psychopathology.

Occurs as a direct consequence of disease of CNS (dementia and other cognitive deficits), rarely an isolated finding with parietal lobe lesions (anosognosia).

Sources of Denial

A defense mechanism used in the face of intolerable anxiety or unresolved conflict.

• Medically ill patients threatened with any of the fears outlined earlier may resort to denial. Also common in individuals threatened by dependency associated with illness for whom the sick role is inconsistent with their self-image of potency and invulnerability.

Sources of Denial

To avoid fear and conflict, patients may deny all or only part of the disease and its consequences.

For example:

• Some deny that they are ill at all.
• Others accept the symptoms but deny the particular diagnosis, the need for treatment, or the need to alter lifestyle.

Consequences of Denial

It is not always a pathologic defense; may serve several adaptive purposes.

• Adaptive value varies; depends on the nature or stage of illness.
• For example, myocardial infarction and sudden death may occur when denial prevents an individual with symptoms of coronary artery disease from acknowledging the symptoms and promptly seeking medical care.

Denial reduces anxiety if not excessive and patients accept and cooperate with medical treatment.

Denial after hospital discharge may be helpful or harmful.

• Too little denial leaves the patient flooded with fears of disability and death and results in unnecessary invalidism.
• Excessive denial may result in the patient rushing back to full-time work, disregarding the rehabilitation plan, ignoring modifiable risk factors, and adopting a cavalier attitude toward medication or other treatment.

Intervention for Denial

• Leave it alone when it does not preclude cooperation with treatment.
• Inform the patient about illness and treatment (ethical and professional obligation of physician). Physicians should never support denial (don't give false information).
• Encourage hope and optimism in the patient.

When denial is extreme and the patient refuses vital treatment or threatens to leave against medical advice:

• Try to reduce denial but not by directly assaulting the patient's defense (associated with intense underlying fear).
• Trying to scare the patient into cooperating will intensify denial and the impulse to flee.

• Avoid directly challenging the patient's claim.
• Reinforce concern for the patient and maximize the patient's sense of control.
• Consider involving family members; they may be more successful in convincing the patient of the need to accept treatment.
• Psychiatric consultation may be helpful in cases of extreme or persistent maladaptive denial; should be obtained if denial is accompanied by symptoms of a major psychiatric disorder.

• Anxiety occurs with the same symptoms in the medically ill as in healthy individuals but a correct diagnosis is more difficult with the coexistence of physical disease because signs of anxiety may be misinterpreted as those of physical disease and vice versa.
• Many somatic pathophysiological phenomena share symptoms with anxiety state such as tachycardia, diaphoresis, tremor, shortness of breath, or abdominal or chest pain.

Panic attacks present with so many prominent somatic symptoms, hence they are misdiagnosed as a wide variety of physical illnesses.

"On the other hand, autonomic arousal and anxious agitation in medically ill patients may be prematurely attributed by the physician to reactive anxiety," - but they can also be signs of pulmonary embolus, cardiac arrhythmia, or hyperthyroidism.

• Physicians could become desensitized in working with seriously ill patients and may lose sight of the spectrum of normal anxiety reactions.
• For example, a physician may assume making a diagnosis of "just chemical diabetes" (in an asymptomatic young adult) ought not to cause too much anxiety.

• The physician may not notice the patient is frightened or if he/she notices may conclude the patient is responding with pathological anxiety.
• However, the patient's anxiety arose from thinking of serious complications (e.g., amputation, blindness, kidney failure), witnessed in relatives with similar disease.

Sources of Anxiety

There are many reasons for anxiety in the medically ill patient.

• Reactions to the same diagnosis, prognosis, treatment, and complications in different individuals could vary.
• There could be fear of death but not necessarily in proportion to the severity of the disease.

Sources of Anxiety

• Many other factors may magnify or diminish the fear, e.g., previous losses, religious beliefs, personality, intractable pain, previous experiences in the medical care system (witnessing other patients' death).
• Fear of abandonment ("separation anxiety"). Fear of stranger ("stranger anxiety").

Morbidity and disability caused by physical disease

• Fear of pain.
• Fear of career, family, or other aspects of life. Fear of loss of control over their own body, e.g., incontinence or metastasis.
• Fear of dependency.
• Guilt fear ("superego anxiety"); common in illnesses attributable to patients' habits (e.g., smoking, diet, alcohol) and non-adherence to physicians' advice.

Consequences of Anxiety

• Adaptive - alert patient to the presence of danger; an appropriate and tolerable amount of anxiety helps patients get medical help and adhere to physicians' recommendations.
• Total absence of anxiety may be maladaptive - promote a cavalier attitude of minimizing disease and the need for treatment.
• Too much anxiety is also not good.

Intervention

• Explore the particular patient's fears.
• Institute appropriate therapeutic intervention.
• Judicious, short-term use of benzodiazepines (1-2 weeks).

• In addition to clinical psychiatric depression, depressed states in the medically ill may include grief, sadness, demoralization, fatigue, exhaustion, and psychomotor slowing.
• Depression shares the same pitfalls described for anxiety (under or over diagnosis).

Vegetative signs and symptoms of depression (e.g., anorexia, weight loss, weakness, constipation, insomnia) may be incorrectly attributed to a physical etiology.

• There can also be premature conclusions that somatic symptoms are due to depression (occult medical disease e.g., malignancy may be missed).

Sources of Depression

• Depression in chronic medical illness may arise secondary to loss of relationship, loss of body parts or functions, loss of control or independence, chronic pain, or guilt.
• Hospitalization is a source of depression for young children and mothers of infants.
• Medical illness may reawaken dormant grief and sadness.

Another explanation for depression is learned helplessness - a behavior model derived from animal models. The course of physical illness, multiple relapses, relentless progression, and/or treatment failure may produce a similar state of helplessness.

Consequences of Depression

• Maladaptive consequences include poor adherence, poor nutrition and hygiene, and giving up prematurely. Patients could become actively or passively suicidal, e.g., a transplant patient who deliberately misses doses of maintenance immunosuppressive drugs.
• Note: It is important to recognize/distinguish pathological depression from normal depressive reaction.

Intervention

• Listen and understand the patient.
• Encourage the patient to openly express their sadness and grief related to the illness or loss. Avoid premature or unrealistic reassurance. Avoid an overly cheerful attitude.
• Provide specific and realistic reassurances, emphasize a constructive treatment plan, and mobilize the patient's support system.
• Demoralized patients before beginning treatment or who are at the start of major treatment (e.g., transplantation, amputation, dialysis, chemotherapy, colostomy) may benefit from speaking with successfully treated patients.
• Pathological depression requires psychiatric consultation and intervention.

Some patients who express a wish to give up treatment may not appear to be clinically depressed.

Sadness and loss are part of life and death, and care is required not to medicalize normal distress. Demoralization is described as a persistent inability to cope together with associated feelings of helplessness, hopelessness, subjective incompetence, and diminished self-esteem.

• Can occur in people with depression but also in people with physical illness who are not clinically depressed.
• May be associated with a wish to die or give up.
• Depression may respond to treatment but demoralization will not.
• It should be understood as a normal psychological process.