Online Medical Reference

Coping with Chronic Medical Illness

Tatiana Falcone

Leah Dickstein

Erin H. Sieke

Kathleen N. Franco

Published: July 2014

Definition and Etiology

Distressing or disabling chronic medical illness challenges effective coping. Faced with a growing population of aging patients who endure chronic medical illness, the primary care physician must have strategies that accurately assess patient adaptation and facilitate more-effective coping if needed. Knowledge of the patient's baseline coping skills and a high index of suspicion for factors that threaten resilience are essential to accurate assessment and achievement of optimal patient coping. In addition to effective listening and empathy, the primary care physician can call on a variety of sources to help facilitate patient coping.

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Prevalence and Risk Factors

Eighty percent of elders have at least one chronic illness. In 2010, 5.5 million Americans were 85 years or older; by 2050, this group is expected to more than triple to a projected 19 million.1 Life expectancy of both men and women has consistently increased since the 1980s.2 Improved treatment of illnesses that previously led to premature mortality (e.g., diabetes, cancer, HIV, stroke) has contributed to this trend. This growing elderly population is faced with the new challenge of effective coping. Many factors, in addition to the burden caused by the illness, influence coping. These include the patient's age, ethnic background, financial status, cultural values, gender, diagnosis, support systems, prior experiences, understanding of illness, and personality traits.3,4 Other important factors specifically related to the illness have being identified such as severity of the illness, disability caused by the illness, unpredictability of relapses, impact on cognition or activities of daily living.5 Also previous coping skills certainly impact how patients react under the stress of chronic illness.6 Rumination is also recognized as a key factor increasing the probability of anxiety in patients with chronic illness.

Having strong support systems enhances resilience and widens access to coping strategies.7 Access to community agencies, family, and friends eases the burden of coping with chronic illness, as do prayer and strong religious faith.8,9

Social withdrawal or isolation, in contrast, make coping more difficult. In the United States, widowed women are less likely than their male counterparts to remarry, and must find alternatives to partner affection and communication for continued support. However, even beyond that associated with depression, general dysfunction from chronic illness is greater if marital distress or punishing verbal responses about symptoms from the spouse is ongoing.10 Comorbid psychiatric illness (e.g., mood disorders, panic disorder, schizophrenia) or neurologic illnesses that causes cognitive, affective, or behavioral disturbances (e.g., Parkinson's disease, stroke, dementia) compounds the difficulties of effective coping. Acute illness, especially when perceived as life threatening (e.g., acute myocardial infarction), can trigger clinically significant anxiety, demoralization, or even depression that compromise resilience.11

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Signs and Symptoms

Each individual patient has a unique style of coping. Kahana and Bibring's classic treatise on personality and response to medical illness provides a useful heuristic for identifying typical coping patterns (Table 1).12 Recognition of the differing patterns helps to inform caregiver responses that, if tailored appropriately, will be perceived as supportive rather than confrontational. Breakdown of coping is suggested by maladaptive behaviors such as nonadherence to treatment recommendations, missing medical appointments, not taking prescribed medication, or avoiding laboratory testing. Anger, rigidity, substance abuse, and unprovoked irritability or hostility also suggest poor coping and should trigger further investigation for underlying depression, anxiety, or psychosis.7,12

Table 1 Personality Profiles and Reactions to Illness
Personality Patients who … Often feel … Are helped by …
Dependent Ask lots of questions
Make it hard for you to end the conversation or leave the room
Afraid that you won't find them worthy
Afraid you won't want to care for them
Offering regular, brief sessions
Setting tactful limits that reassure the patient and do not annoy staff
Obsessive Are insistent
Are detail oriented
Are angry when they can't control their illness, the staff, and the schedule Offering detailed explanations
Providing choices whenever possible
Trying to use patient input collaboratively
Narcissistic Are self-centered
Criticize others
Believe no one is qualified
Are fearful, threatened, and vulnerable Avoiding confrontation, but emphasizing they deserve the best care we can provide
Keeping them informed (same message from all staff)
Suffering Victim Always have symptoms and request much attention
Might not follow recommendations
Suffering is their role; illness punishes them (and sometimes physician) but hopes doctor will keep trying Regular visits, no matter how varying the complaints
Encouraging them to “suffer” through treatments
Paranoid Do not trust
Refuse to participate in plans
Threaten to sign out of the hospital against medical advice
They are being taken advantage of by others or purposefully neglected or harmed Staying calm
Not arguing
Offering understanding of their position
Making clear recommendations
Histrionic Are flirtatious
Want to call the doctor by his or her first name
They want to be special in the eyes of the physician
Illness will invalidate them or make them unattractive
Encouraging the patient to verbalize concerns
Setting boundaries for the relationship
Remaining courteous and objective
Schizoid Are very lonely
Tend to avoid medical care
Doctors are invading their privacy Engaging them in helping to make medical decisions

Emotional Responses to Medical Illness

Response to medical illness is governed to a large degree by the meaning of the illness to the patient. The belief that a diagnosis of cancer is synonymous with a death sentence or that diabetes signals inevitable blindness can trigger panic, depression, or anger. Careful attention to the patient's point of view is essential to identifying catastrophic thinking, core beliefs, and associated core emotions.13 Lazarus lists some core emotions in coping with medical illness including anger, anxiety, guilt, fright, shame, sadness, happiness, envy, relief, and hope.4 Either acute or chronic medical illness is likely to trigger anxiety and depression in patients with mood or anxiety disorders.4 Psychological variables are often more powerful predictors of poor quality of life than physical symptoms.14 Patients with neurological disorders are more likely than other chronic illness to develop symptoms of anxiety and depression.15,16 Perception of illness is a key factor, when analyzing how patients cope with chronic illness, helping patients reduce perception of illness intrusiveness has been related with improved quality of life in patients with cardiopulmonary disease.5

Coping Styles

Patients tend to exhibit adaptation consistent with their personality traits. Kahana and Bibring (see Table 1) predict specific traits that often respond best to particular management strategies. Recognition of these traits and appropriate responses to them by health care personnel increase the likelihood that the patient will respond optimally to care management. Failure to recognize and respond to characteristic behavioral patterns risks conflict with the patient, who feels misunderstood and mistreated (see Table 1).17 There are two main functions of the coping process: a problem focused function, centering on gaining information and taking action, and an emotion focused function, which serves to regulate the emotions linked to the medical illness.18

Adaptive and Maladaptive Responses

Coping styles are often described in terms of predominant defenses used by the patient. Defenses are mental (intrapsychic) maneuvers—generally unconscious—that protect one from distress caused by unacceptable thoughts or feelings. Vaillant has proposed a hierarchical organization of defenses from psychotic to immature, neurotic, and mature. Studies of the relation between defenses and coping styles indicate that high-functioning persons use predominantly mature and neurotic defenses, whereas less-resilient persons (generally those with personality disorders) exhibit more primitive (immature and psychotic) defense mechanisms.19 Examples of defense mechanisms include suppression (mature), repression (neurotic), passive-aggressive behavior (immature), and denial (psychotic).

Each defense represents a way one might respond when receiving unwelcome news, for example, a diagnosis of myocardial infarction. A mature, adaptive response involves suppression of fear in the service of compliance with further evaluation and testing. Forgetting to pick up prescribed medication at the pharmacy is an example of repression. Repeated failure to follow through with recommended exercise and dietary management represents passive aggressive behavior. Denial might manifest as refusing to accept the diagnosis of myocardial infarction and threatening to leave the emergency department against medical advice.19 Active coping strategies such as positive reframement, seeking social support, and using hobbies or other activities to distract one's self are associated with better health-related quality of life and decreased mental health symptoms.5,20

Even generally high-functioning persons can regress in the face of life-threatening illness. Such regression can resemble the behavior of a dependent child or an angry adolescent. Hypersexual behavior in the male whose masculinity has been threatened by disabling illness is another example of regressive behavior. However, this can also be caused by neurologic illness or side effects to medications and requires evaluation. As many as 50% of patients with chronic illness do not take medications as prescribed. Physicians are often unaware that their patients are not taking their medication. Side effects, cost, stigma, poor understanding, poor rapport with the prescribing physician, and treatment complexity contribute to nonadherence. Adherence in elderly patients may be even lower due to an increased disease burden. Elderly individuals living in retirement villages and rural communities may require the greatest support to improve adherence to prescribed medications.21

Perry and Viderman discussed psychological underpinnings leading to nonadherence, such as humiliation or counteract a feeling of helplessness. Anger toward the physical disorder or toward the physician for not being able to eradicate the illness may underlie the decision.22

Signing out against medical advice is another maladaptive response that occurs in about 2% of all hospital discharges. Different factors can play roles, including anger toward the medical team or the caregiver, anxiety, withdrawal from abused substances, or intense denial of the illness. Some patients may be psychotic from a primary psychiatric disorder such as schizophrenia or a bipolar condition or secondarily from delirium or dementia.23

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Diagnosis

If the patient's coping strategies are ineffective or causing trouble, the patient should be screened for a major psychiatric disturbance, particularly when there is poor adherence to treatment. Depressed patients with low energy and little motivation might not be able to follow the treatment, and bipolar hypomanic patients might believe they don't need treatment. Psychotic, paranoid patients can feel threatened by the treatment or the doctor. Fearing they will not be taken seriously due to the stigma of mental illness, some omit telling their general practitioner about their psychiatric symptoms or diagnosis. Patients avoid taking newly recommended medications if they fear side effects or interactions with their current psychiatric medications.11

If the major diagnosis is personality disorder, psychotherapy, patience, and defining boundaries can reduce the wear and tear on the patient and the physician.

Stressors with social, economic, or emotional valence can affect coping behavior.

Dependency on alcohol and other substances of abuse can easily become the preferred way for some patients to cope, particularly when they have inadequate interpersonal support. The physician must carefully screen to be certain pain control is truly adequate, because the patient might simply be trying to self-medicate.

There are some differences among the psychiatric factors that affect coping. A patient who has a major Axis I diagnosis often needs pharmacologic treatment. A consultation with a psychiatrist is a good idea to ascertain if the treatment is optimal and drug interactions are avoided. If the major diagnosis is Axis II, the essential treatment is psychotherapy. The physician must keep in mind that these patients struggle with basic coping skills. Axis III refers to the patient's medical conditions that can affect the psychiatric presentation, and vice versa. Reviewing all the social, economic, emotional, and family situations that might be affecting the patient's coping behavior provides important data for Axis IV. Axis V is a scale from 0 to 100 that provides an overview of how the patient is functioning and if the patient will be able to manage outside of the hospital.24

If the primary physician is not certain a psychiatric disorder exists and is causing maladaptive coping or requires treatment, a psychiatric consultation is recommended.

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Treatment

The physician can gather the patient's emotional reactions and cognitive interpretations about the illness to identify patient strengths and to discern ways the patient has handled stressful situations in the past. A practical approach that is helpful to any physician is to attempt to choose a setting conducive to communicating with and understanding the patient. In particular, the doctor should allow adequate time for questions from the patient and the family. Explore the patient's current understanding of their current medical problems and how the patient is using available support. Inquire about the emotional reaction, how the patient is feeling, and how the family is coping with the medical illness. Assess whether spirituality or religion plays a role in the patient's life.

Determine what sources of support are available for the patient, such as church, community, friends, or family. High social support of patients in heart failure reduced anxiety and depression in a 9-month longitudinal study.25 Social contact is associated with longer survival in women with breast cancer.26 The physician can recommend seeking out such support persons and groups or ask if the patient would like additional help. Make sure the patient hears your support and understands that there is always hope. Many resources are available that can be very beneficial for patients. A nurse practitioner can make extra visits to educate the patient about the medical condition; a home health aide can assist a patient having problems dealing with disability, lacking assistance with medications, or even accessing care. Social services can identify local or nationally sponsored support groups or other community resources. Not only can multidisciplinary teams provide support and improve compliance,27 they can also build affirming, open dialogue and enhance confidence when patients truly participate with their team.28 Family members are always a great resource because they often know how the patient is doing at home. Self-help manuals and leaflets can benefit motivated patients and families. Scholten and colleagues demonstrated functional and social benefits for patients with rheumatoid arthritis lasting up to 5 years after an intensive 9-day multidisciplinary program that included education, gym exercises, use of devices, counseling, dietetics, and discussion of social assistance.29 Falcone et al demonstrated the importance of psychoeducational interventions to help families and adolescents coping with epilepsy; after the intervention, more parents reported being able to recognize mental health symptoms in their children (P < 0.0001). Parents were also more likely to access mental health services sooner (P < 0.0001 ).30,31

If the physician notices the patient has difficulties adjusting, such as with medication noncompliance, missing appointments or contradictory answers, the assistance of a mental health professional can be very helpful. Sometimes the time from the report to initial symptoms of depression until the patient with chronic medical condition is referred to a mental health provider can be very long, from 6 months to years. Some studies have identified the long time for referral as a key factor for increased suicidal ideation and attempts in some patients with epilepsy. Patients with increased isolation, hopelessness, serious nonadherence to treatment, or irrational behavior should be referred early to a psychiatrist.32

A few groups are trying diverse programs that might save time or money or simply have more appeal for some patients. Researchers compared a standard support group with an educational group learning about imagery, meditation, rituals, and affirmation. Breast cancer patients randomized for 12 weeks to either intervention found that participation improved quality of life and reduced anxiety and depression.33 Yoga is another option that not only reduces depression and anxiety, but also has medical benefits; for example, in patients with atrial fibrillation and type 2 diabetes.34,35 Recently, mindfulness-based therapy has been shown to reduce psychological distress and improve quality of life in various patient populations.36,27 Self-regulation interventions help patients balance problem-focused input with emotional regulation to cope with illness related distress.38 It is interesting that pure problem-focused interventions have not always been successful and even occasionally have had negative outcomes. A focus on strength and resiliency may be preferable to deficit-focused interventions. More recent research describes how, through cognitive reappraisal and distraction, patients can be taught to regulate their emotions, conferring benefits for their physical health conditions.39

For most chronic medical conditions, a healthy lifestyle would benefit patients physically and mentally, if they were able to follow one. Physicians should tell patients about the advantages of weight loss, cessation of smoking, reducing alcohol, exercising, and others. Both patient and physician set goals, but the unhealthy habits return. The patient returns to status quo, or potentially even feelings of hopelessness. A 12-step group confers coordinated programs for substance dependence and helps to maintain continuous abstinence.40 Medication for chronic pain may also help to restore a person's ability to maintain a healthy lifestyle.41

Physicians of all specialties can learn motivational interviewing.42 Steps to this approach are effective and can hold significant rewards for patients (Box 1). Furthermore, focusing in the medical home model, a collaborative, patient-centered approach that includes nurses, primary care physicians, and specialists can greatly increase the likelihood that treatment will be effective. One randomized controlled trial in diabetic patients showed that a multidisciplinary treatment approach focused on goal-setting and problem solving resulted in better patient satisfaction with medical care and greater improvement in hemoglobin A1c, blood lipids, and blood pressure.43

Box 1 Motivational Interviewing
Asking permission to discuss with the patient
Begin with an open-ended question
Reflect back the patient's opinion
Explore the importance of this topic from the patient's point of view
What would make that increase or decrease
How confident is the patient that if they wanted to make a change, they could
What would make that rise or fall
Expose the ambivalence
Reflect to them
When they are ready, work out a plan together

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Prevention and Screening

There are no well-accepted guidelines that work in every patient with any chronic medical illness. There are some recommended guidelines for certain diseases, such as cancer or cardiopulmonary disease that are easily accessed through organizational websites.

Patients with previously diagnosed psychiatric disorders are at higher risk for problematic coping when confronted with a life-threatening condition or a worsening of their chronic medical illness. Some psychotropic medications can interfere with the treatment of medical illness.17 Fortunately, there are guidelines and options for treating all the major Axis I disorders. Certainly, improving a patient's mental health can benefit the patient's efforts to cope with the physical condition.24

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Special Populations

Compared with 50 years ago, the stigma of having cancer has been reduced. However, many cancer patients still feel stigmatized. If depression coexists, it produces an extra barrier to treatment.

Patients with cancer have a 1.5-fold increased suicide risk over that of the general population. Passive suicidal thoughts are common (8% in terminal phases). It is critical for clinicians to look out for depression and suicidal thoughts in newly-diagnosed patients as the highest risk for suicide is in the first year after a cancer diagnosis.44 Relapse after initial remission is another time of greater suicide risk.45

The overlap between mental health and epilepsy is well documented. Epilepsy is truly a spectrum disorder because of its association with multiple other comorbidities, particularly autism, attention deficit disorder and hyperactivity, depression and anxiety.46 It is therefore very important to detect early all comorbid conditions associated with epilepsy. Compared with the general population, children with epilepsy are more likely to experience depression (8% vs. 2%), anxiety (17% vs. 3%), attention-deficit hyperactivity disorder (23% vs. 6%), conduct problems (16% vs. 3%), developmental delay (51% vs. 3%), autism and other disorders in the spectrum (16% vs. 1%).15 Patient and families with epilepsy were at higher risk of having unmet medical and mental health needs according to the National Survey of Children's Health 2007.7,8 The National Profile of Childhood Epilepsy and Seizure Disorder concluded in a representative sample that children with epilepsy were at increased risk for mental health, developmental and physical comorbidities, increasing the need for a medical home and care coordination services as well as specialized services.15 Integrated clinical service teams in epilepsy care are essential to achieve the goal of evidence-based practice in this population.16,47

The incidence of depression in children with epilepsy varies between 25% and 35% compared with 1% to 2% in healthy pre-pubertal children and 3% to 8% in adolescents.16,48-51 The mental health needs of children with epilepsy are largely unmet, contributing to longer periods of depression that may continue through adulthood.48 Studies that have used structured psychiatric interviews such as the K-SADS (Kid Schedule for Affective Disorders and Schizophrenia) report the incidence of depression in children with epilepsy to be as high as 33% in children with average IQ scores.47,48 Studies around the world replicate these findings.16,51 Patients with epilepsy and depression have some of the lowest scores on quality-of-life scales, even when seizures are under control.52 In addition, psychosocial adaptation has not been investigated extensively in this population. The National Institute of Neurologic Disorders and Stroke has identified this area as an important research benchmark that needs further characterization. Children with epilepsy are at higher risk of limitations on abilities and parent aggravation, as well as having unmet medical and mental health needs.53,54

Men are at increased risk for suicide. Other risk factors include advanced stage of disease, poor prognosis, delirium with poor impulse control, inadequately controlled pain, family history of suicide, previous suicide attempts, physical and emotional exhaustion, and social isolation. Hopelessness and extreme need for control also increase risk. Patients with cancer in the head, neck, or gastrointestinal system have a higher risk of suicide and alcohol disorders.32

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Summary

  • Chronic medical illness challenges patient's coping skills.
  • The effectiveness of coping is determined by premorbid (baseline) coping strategies, current illness burden including comorbid psychiatric disorder(s), and availability of support mechanisms.
  • Common indicators of ineffective coping include nonadherence to treatment, denial or minimization of illness, substance abuse, and high use of health care.
  • In addition to empathic listening and support, the physician should mobilize other sources of support including ancillary medical staff, family, religious, and illness-oriented support groups.
  • Motivational interviewing holds promise for primary care specialists aspiring to help patients discover their own ambivalence and who have a desire to change unhealthy ways.

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Suggested Readings

  • Robinson RG, Jorge RE, Moser DJ, et al. Escitalopram and problem-solving therapy for prevention of poststroke depression: a randomized controlled trial. JAMA 2008; 299:2391–2400.

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