Coping with Terminal Illness

Author: Guido R. Zanni, PhD, and Charles L. Browne III, JD

Pharmacists are the key position to help patients cope with serious illness and adjust their lifestyles to their conditions.  Here is the practical guide for counseling patients living with these life-changing health concerns.

“You have a terminal illness.” This single sentence turns an individual’s world upside down. Shocked and stunned, patients are engulfed by intense emotions, obliterating the rest of the conversation. Understanding patients’ reactions to a terminal illness—such as cancer—as well as the ensuing psychological trauma and individual coping styles provides the foundation for compassionate, but effective, communication.

Through the Patient’s Eyes
Patients want to know if they have a terminal illness,1 and may react in 1 of 5 possible ways to the diagnosis: denial (“It must be a mistake”); despair or depression (“Nothing will help”); anger (“I do not deserve this”); acute anxiety (“I am a nervous wreck”); or fighting determination (“I will beat this”). Many individuals display a combination of these reactions.

All patients experience fear. These include the fears of dying alone, not getting to say goodbye, leaving family members without a provider, loss of independence, and being a burden to their families and friends, as well as sorrow about things they will never be able to do.2,3 Worries about family members are particularly acute.4

Concurrently, patient attention focuses on treatment and emotional needs (see Table 11,2,5,6). Information needs vary by symptom severity. Individuals with daily symptoms want more information than those with less frequent symptoms.2

Hope and Coping
Many patients find meaning in their illness. Findings suggest that 30% to 90% of patients with life-threatening diseases report being positively affected in some manner.7 Illness-derived benefits include a greater appreciation of life, changes in priorities, improved interpersonal relationships, and greater spirituality, to mention a few.7 Values shift from financial or workplace successes to friendships and family. Many patients embrace tasks they want to finish before the illness’ disabling effects strike.

Patients need considerable coping skills to grapple with issues associated with a terminally ill diagnosis. Hope is repeatedly identified as essential. Successful coping exists when patients use active problem-solving strategies. These include redefining options, reexamining alternatives, and expressing feelings.4 Coping strategies change as pathology progresses. Factors associated with successful coping include understanding the illness, treatments and related side effects, and disease trajectory; strong support systems; religion; and adequate financial resources.5 Some patients employ denial as a coping strategy, and while denial is not optimal, it allows them to live in the present and ignore negatives.4

Along with hope, many patients display optimism, and both traits are linked to positive health. Research demonstrates that hopeful, optimistic patients experience lower rates of depression, anxiety, and anger, adjust better to negative outcomes, and have longer survival rates compared with pessimists.7

Through the Provider’s Eyes
Forty years ago, health care providers withheld a terminal diagnosis from patients, believing it was damaging.8 This changed in the 1970s, when studies reported that patients desired such information.8 Breaking bad news is a complex and emotional process for providers, and many find it stressful. See Table 22,5,8,9 for examples of provider communication and the difficulties that can be encountered while dealing with a terminally ill patient.

Psychological Issues
The negative psychological effects of a terminal diagnosis include anger, denial, insomnia, depression, anxiety, and substance abuse. Studies report up to 48% of cancer patients fulfill criteria for clinical depression, and up to 25% meet criteria for anxiety—2 treatable conditions.4 Additionally, suicide has been linked to ineffective pain management, especially in elders.10 Ongoing psychological assessment and intervention should be an integral component of treatment planning.

Counseling Issues
Understanding the disease trajectory and treatment of common terminal illnesses provides the foundation for effective patient counseling. While cancer is among the most common terminal illnesses, others include AIDS, Alzheimer’s disease, amyotrophic lateral sclerosis (Lou Gehrig’s disease), cardiomyopathy, congestive heart failure, chronic obstructive pulmonary disease, dementia, emphysema, heart disease, liver disease, multiple sclerosis, renal or respiratory/pulmonary disease, and stroke. Knowing this information is critical. Patients remember only 50% of the information discussed by providers,11so pharmacist counseling is an important opportunity to close the gap for patients with these terminal illnesses.

In fact, patient understanding impacts outcomes—patients lacking insight are at higher risk for inadequate management of end stage care, unnecessary hospitalizations, poorer symptom control, and late referrals to palliative care.1 Additionally, insufficient information is linked to increased stress, anxiety, and frustration. Patients tend to believe clinicians withhold information because the situation is more dire than originally discussed.1

When counseling patients with a terminal illness, pharmacists should select an appropriate setting for the session to ensure privacy. Do not dwell on diagnoses; merely recognize the patient’s condition and probe for understanding: “I understand you have seen an oncologist— can you tell me what is going on?”

Probe for medication side effects. Avoid open-ended questions such as, “Are you experiencing any side effects?” A patient can easily confuse side effects with symptoms of the illness. Focus on the most prevalent symptoms associated with terminal illness: fatigue, anorexia/cachexia, pain, nausea, constipation, altered mental state, depression, and dyspnea. Be prepared to discuss potential treatment options, and contact the physician if necessary. Expect emotional responses and respond accordingly: “I know this must be very difficult to talk about.” Table 32,5-7,12 lists other counseling guidelines.

Final Thought
The goal is to help patients reach realistic expectations. From a treatment perspective, this means achieving the highest level of functioning possible within the constraints of the patient’s illness.

Dr. Zanni is a psychologist and health systems consultant based in Alexandria, Virginia. Mr. Browne is public health program chief at the Prince George’s County Health Department in Maryland and an attorney. Views expressed in this article are those of the authors and not those of any government agency.

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