On a basic level, all animal and human behaviors derive from the widely described motivational triad of the pursuit of pleasure; the avoidance of pain; and the conservation of energy. The patient perceives every illness or injury as a dangerous situation. Their unique experiences with danger will influence their emotional and physical reactions to the present threat. Every disease or injury causes both a physiologic and an emotional reaction. Many patients report the apprehension, irritability, or “dis-ease” that precedes or accompanies the development of physical symptoms.
Judging by the variations in patients’ reactions to the venipuncture, a common bedside procedure, we learn a lot about the variability in a person’s reaction to a mildly painful procedure. Most people turn their heads and quietly tolerate the stick; others carry on, scream, and cry. Some people actually become syncopal. It’s the same procedure with mild discomfort that most children and adults can handle without the drama.
The appropriate question to consider at the time of presentation is not whether the patient is having an emotional reaction but what the emotional response to illness is and how it affects the patient.
Seven Fears Associated With Illness
Psychiatrist Dr. James Strain outlined seven basic types of developmental fears associated with illness, treatment, and the hospital environment.(1) Basic survival instincts underlie many of these fears. The fears experienced by emergency department patients coincide with these seven basic existential threats.
Fear of the threat to basic integrity and efficacy: We like to believe that we are autonomous and indestructible. Yet, we are not indestructible, and in the emergency department or in the doctor’s office, we are not in control. The level of illness or disability from an injury pokes a huge hole in the self-determination and thoughts of invincibility that people have about themselves. For some people, illness or injury threatens self-esteem or feelings of worthiness. Illness or injury also interferes with one’s ability to perform effectively at work, at home, or in leisure activities. Many people are afraid of pain and consider it another threat to their integrity. When patients fear intolerable pain or the inadequacy of the offered pain control medications or anticipate a painful procedure or treatment, they become anxious.
Fear of strangers: This fear arises as patients put their lives into the hands of strangers. They see a sea of unfamiliar faces of people whom they must trust while in their most vulnerable state. A hospitalized patient may see a large cast of strangers — a respiratory therapist, a physical therapist, a registered nurse, and an LPN who brings him his meals — causing significant distress.
Fear of separation from loved ones: The patient may rely on family or trusted friends for comfort, support, and communication. Young children rely on a parent for protection and predictably become upset at any separation. An elderly patient may wish their spouse or child was there to look out for them. Some patients fear death.
Fear of the loss of love and approval by loved ones: Patients may fear scarring or the loss of physical attractiveness. They may fear the loss of their ability to perform activities that are important to them, including intimacy. “Will my spouse still want me?”
Fear of the loss or injury of body parts: This fear triggers tremendous anxiety in patients as they wonder how they can live after some sort of disfigurement. People wonder whether they can function fully after losing a finger or toe. In the memoir of her breast cancer journey, The Undying, Anne Boyer articulates her understanding of her painful and disfiguring treatment. “A cancer patient can tell herself why what is done to her must be done, but this does not fix the feeling that she has been cut up, poisoned, harvested, amputated, implanted, punctured, weakened, and infected, often all at once.”(2)
Fear of loss of control of developmentally achieved functions: After a fall or an infection, a person may experience urinary or fecal incontinence, which usually is embarrassing to the person and sometimes terrifying. They feel like a baby with all of the associated and complex meanings that immaturity may signify. They may wonder if they will always be incontinent. After a fall, they may fear that they will be unable to walk again.
Fear of reactivation of feelings of guilt and shame: This fear may be associated with previous life experiences. Some patients actually fear that illness or injury is in some way retaliation for a previous transgression.
The emotional response to illness depends on several factors. The first is the nature and severity of the illness itself. Faced with a new illness or injury, patients have little knowledge or understanding of its nature or severity. Many patients look up their symptoms on popular medical information websites and jump to the most severe conclusions about their signs and symptoms. Because laypeople find it difficult to contextualize the broad differential diagnoses offered in online medical resources, they tend to focus on what they perceive is the most dangerous diagnosis.
The special meaning that the particular illness or hospitalization may have for a patient also affects their emotional response. For example, if a 40-year-old man begins having chest pain and knows his father died of a heart attack, he may be much more anxious or agitated than the severity of the symptoms would suggest. If a 40-year-old woman begins to have abdominal pain, she may focus on the history of colon cancer that runs in her family.
The characteristic personality and coping patterns of the particular patient can make a tremendous difference in the emotional response to illness. A person who resists help and shuns medicine may meet the offer of both with seemingly unexplained hostility and resistance.
Past experiences with illnesses, doctors, nurses, and hospitalizations play a tremendous role in a patient’s emotional responses. Patients may want to avoid a certain room in the emergency department because they had a bad experience in that space previously. A loved one may have died in your hospital so the patient will resist admission or treatment at that facility. My father-in-law loved the physician assistant who repaired his laceration and insisted that she be the one to remove his sutures — a problem, because Justine, the PA, was not on duty on the day of his appointment.
Healthcare providers’ responses to their patients can have a far greater impact on their patients than they realize. We tend to mirror the emotions modeled before us. When a patient presents with courtesy and deference, we easily respond to them in kind. Unfortunately, a grumpy or abusive patient prompts the staff to mirror those behaviors as well. A patient can interpret terse responses from a harried staff member as indifference or hostility; patients and families may respond with anger or antagonism.
Being aware of our patients’ thoughts and beliefs related to their visit to the medical office or emergency department can help us to better understand them. This understanding is enhanced by reviewing the adaptive or “normal” responses to illness that “good” patients exhibit.
How “Good” Patients Handle the Challenges of Illness and Injury
Many patients have positive thoughts about their abilities and their support systems that help them adapt and function even when they are ill or injured. “Good” patients deal with challenges and fears such as those listed above using the following strategies:
Maintaining emotional balance: The stress of illness creates a series of emotional reactions that people must weather to continue with their lives. An ill or injured person must navigate new emotions of sadness, disappointment, fear, or anxiety. Despite their illness and injury, adaptable people continue to anticipate and experience happiness.
Preserving social relationships: Because illness creates so many complications in one’s life, normal social relations can become strained. The ability to establish and sustain relationships in spite of illness represents a core challenge for patients, especially those with chronic illness. A self-reliant person may need to depend on friends or neighbors for the first time. Adaptable people are able to establish and/or maintain their social relationships.
Preserving family relationships: Family relationships can be even more difficult and important because the family may live together. Sickness often alters relationships in the family. Parents who have always been the caretakers may suddenly find themselves dependent on their children. Patterns of intimacy, role responsibility, and parenting can all be altered by acute or chronic illness. Adaptable patients recognize the importance of preserving family relationships.
Coping with disability: Illness often is associated with physical impairments that render some type of disability, including difficulty walking, physical pain, trouble using one’s hands, difficulty seeing or hearing, trouble sleeping, inability to carry out the activities of daily living, and the inability to drive. Adapting to the physical impairments caused by illness is a continuous and sometimes overwhelming challenge for patients. Those who are adaptable are able to think beyond the question of whether they will be able to function with their disability and focus on how.
Coping with the unknown: Patients in the medical office or emergency department may be learning about an illness that they are not familiar with and don’t understand. Some patients do not know whether they will survive their illness or injury or what level of impairment they will deal with in the future. Good patients are able to call on their coping mechanisms, including positive thoughts and strong relationships with others, to face the unknown.
Coping with pain: Many patients must learn to live with pain. Good patients accept some discomfort while they heal and do not become overly dependent on addictive analgesics. They can foresee a future where they will heal and move beyond the acute pain of illness or injury.
Adapting to a variety of healthcare providers: Patients must adapt to many different doctors, nurses, healthcare personnel with various specialties, personalities, and temperaments. Good patients figure out who to ask for what and how to get what they want and need.
References
Blumenfield M, Thompson TL. The psychological reaction to physical illness. In: Simons RC, Pardes H, eds. Understanding Human Behavior in Health and Illness, 2nd ed. Baltimore, MD: Williams & Wilkins; 1981.
Boyer A. The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care. New York: Farrar, Straus and Giroux; 2019.
Excerpted from Changing How We Think About Difficult Patients by Joan Naidorf, DO.