◆ Anxiety is a universal subjective and objective life experience that crosses all eight palliative care domains of the National Consensus Project (NCP) Clinical Practice Guidelines.
◆ Anxiety and chronic diseases are interchangeable in their causal relationship; chronic diseases can exacerbate symptoms of anxiety, and anxiety disorders can lead to chronic diseases.
◆ Assessment and treatment of anxiety by the advanced practice registered nurse (APRN) is essential since it affects all four whole-person dimensions of suffering: physical, psychological, social, and spiritual.
Anxiety, an aspect of our history that spans the evolutionary process, is inherent in all the domains of the National Consensus Project for Quality Palliative Care’s Clinical Practice Guidelines. Anxiety is present in the everyday lives of humans, whether patient or clinician. Anxiety is unique and specifically identified within NCP Domain 3 under Psychological and Psychiatric Aspects of Care: “The interdisciplinary team assesses and addresses psychological and psychiatric aspects of care based on the best available evidence to maximize patient and family coping and quality of life”.1 Due to the physical, affective, behavioral, and cognitive responses that anxiety may escalate, it can be clinically implicated in NCP Domain 1, Physical Aspects of Care; NCP Domain 2, Physical Aspects of Care; NCP Domain 4, Social Aspects of Care; and NCP Domain 7, Care of the Patient at the End of Life.
Anxiety is a multidimensional subjective and objective experience with manifestations of physical, affective, behavioral, and cognitive responses.2 As such, it can be considered both positive and negative. The experience is the physiological reaction that occurs in response to a perceived harmful attack or threat to survival. These include feelings of worry, apprehension, tension, and nervousness that are unpleasant and distressful, but they are a common response for patients and family members when faced with a serious diagnosis.
Anxiety is a natural and expected part of the coping process that helps us adapt to everyday concerns. However, extreme distressful anxiety can impair daily function, causing disability and disruptions in quality of life for patients, family, and caregivers.3 Specific differentiation between anxiety as a normal response and a specific diagnostic criterion that requires professional intervention and treatment is outlined according to the fifth edition of The Diagnostic and Statistical Manual of Mental Disorders (DSM-V-TR).4 The experience of apparent uncontrollable physical, affective, behavioral, and cognitive symptoms having no specific stimulus warrants consideration of a pathological disorder. Anxiety disorders are categorized according to criteria and range in complexity and severity from panic attacks, acute stress disorder, generalized anxiety disorder, social anxiety disorders, phobias, obsessive–compulsive disorder, post-traumatic stress disorder, anxiety secondary to a medical condition, and substance-induced anxiety disorders.4
Common situations, medical conditions, medications, and substances are associated with and can cause nonspecific anxiety symptoms.5,6 Existential and psychosocial concerns increase anxiety when a person is faced with mortality, long-term or permanent disability, loss of control, family and financial crisis, loss of meaning, hope, and purpose, and religious or spiritual crisis. There is also considerable overlap and confusion among the anxiety, depression, and delirium that commonly arise as part of an illness trajectory and that can either lead, progress to, or continue in a vicious downward cycle when not recognized and treated appropriately (Table 31.1).
Table 31.1 Associated Causes and Mimics of Anxiety
Acute emotional disruption
Legitimate worries and concerns
Loss of control
Coping style (poor pattern)
Side effects of medications
Spiritual and existential crisis
Grief and bereavement
Despite the importance of mental health and the increasing prevalence of mental health disorders, U.S. healthcare delivery systems are complex and fragmented, and patients and families are offered little guidance in navigating these systems to manage medical conditions effectively. The result is that anxiety is underestimated, untreated or undertreated, and unrecognized by healthcare professionals. Furthermore, intensified financial stress and social economic burden contribute to anxiety. Given this, anxiety is a contributory factor for caregiver burden, chronic distress, mortality, and comorbidity of the family and caregivers.7,8 Barriers to appropriate professional intervention are also created by the lack of an integrated palliative care curriculum, inadequate professional resources, personal experiences, limited assessment skills and clinical knowledge, and personal biases associated with the stigma and stereotypes related to diagnosis. This often leads to acceptance of not treating anxiety or its physical, emotional, and psychosocial manifestations.
This chapter presents palliative care from the APRN’s perspective, focusing on APRN competencies as an effective team member or leader for patient-family centered care. Assessment and management of anxiety are based on national quality clinical practice guidelines, evidence-based research, and recommendations by national professional organizations.
Definitions and the Distress Continuum
Any serious illness, such as cancer, is a life-altering experience. In the 1970s, Weissman and Worden identified the first 100 days after the diagnosis of cancer as an “existential plight” in which patients suddenly confront their mortality. This is an extremely fragile period filled with fear and anxiety. Information, communication, and overall psychosocial support are priority needs for the patient’s mental well-being.
How anxiety is defined, when an individual is diagnosed with a serious illness, ranges from normal adjustment issues to syndromes that meet the diagnostic criteria for mental disorders. It occurs on a continuum of increasing levels and severity of psychosocial distress, ranging from normal adjustment to adjustment disorders, and subthreshold mental disorders to diagnosable mental disorders (Fig. 31.1).9,10,11 As healthcare professionals, APRNs must appreciate the variety of related concepts and distinctions of normal adjustment issues from mental disorders along the distress continuum to anticipate potential or actual needs, treatments, and interventions (Table 31.2).
Table 31.2 Summary of Psychosocial Distress Definitions
Ongoing life processes and coping responses associated with living with cancer to:
A diagnostic category of the fifth revised edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-V-TR):
From reference 11.
Normal adjustment or psychosocial adaptation is not defined as a single event or in a specific moment in time. Adjustment and adaptation are constant and represent an ongoing process. Coping behaviors are continuous as the individual learns to manage life and relationships that incorporate and integrate a serious illness into daily activities. As personal, professional, and family relationships change, the individual is confronted with solving and mastering cancer-related emotions, issues, and situations.12,13,14 Psychosocial distress has been defined as:
an unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with the ability to cope with cancer treatment. It extends along a continuum, from common normal feelings of vulnerability, sadness, and fears, to problems that are disabling, such as depression, anxiety, panic, and feeling isolated or in a spiritual crisis.9,10,11,12,13,14
Adjustment disorders are a diagnostic category in DSM-V-TR. For some, the psychosocial stressors associated with a cancer diagnosis are identifiable with a reactive psychopathology less severe than diagnosable mental disorders that impair social or occupational behavior significantly. The DSM-V-TR anxiety disorders are a group of mental disorders whose common symptoms include excessive, unwarranted, often illogical anxiety, worry, fear, apprehension, and/or dread.4
Prevalence and Incidence: Anxiety and Chronic Disease Connection
There is a close relationship between the prevalence of anxiety and the incidence of mental illnesses and chronic diseases. According to the Centers for Disease Control and Prevention (CDC), the National Center for Chronic Disease Prevention and Health Promotion, Division of Population Health, recognized that chronic diseases can exacerbate symptoms of depression, and depressive disorders can lead to chronic diseases.15 Anxiety, when unrecognized, unassessed, and undertreated, with other comorbid conditions potentiates adjustment disorders. The CDC report Mental Illness Surveillance Among Adults in the United States, which supplements the CDC’s Morbidity and Mortality Weekly Report (MMWR), compiled the first national data to measure the prevalence and effect of anxiety and other mental health conditions for adults in the United States. It underscored the correlation between mental illness and chronic illness.16 Executive highlights pertaining to chronic disease and anxiety/mental illness are as follows:
◆ 25% of all U.S. adults have a mental illness and nearly 50% of U.S. adults will develop at least one mental illness during their lifetime.
◆ Mental illness is associated with increased occurrence of chronic diseases, such as cardiovascular disease, diabetes, obesity, asthma, epilepsy, and cancer.
◆ Treatment of mental illnesses associated with chronic illness reduces the effects of both and supports better outcomes.
Table 31.3 Anxiety and Chronic Disease Prevalence
Angina, congestive heart failure, hypovolemia, mitral valve prolapse, myocardial infarction, paroxysmal atrial tachycardia
Carcinoid syndrome, Cushing’s disease, hyperglycemia, hypoglycemia, hyperthyroidism, hypothyroidism, pheochromocytoma
Anemia, hypercalcemia, hyperkalemia, hypoglycemia, hyponatremia, hyperthermia
Asthma, chronic obstructive pulmonary disease, hypoxia, pneumonia, pulmonary disease, pulmonary edema, pulmonary embolus
Akathisia, encephalopathy, brain lesion, seizure disorders, post-concussion syndrome, vertigo, cerebral vascular accident, dementia
Islet cell adenomas, pheochromocytoma
Hormone-producing tumors, pheochromocytoma
Anxiety, whether positive or negative, occurs throughout life. It is a continual process with many revolving cycles, not a linear progression. When a patient is diagnosed with a serious illness, anxiety is often identified and separated into categories based on different life experiences. Palliative care practice differs because it embraces and incorporates the integrative nature and multidimensional holistic human needs approach to care, which challenges the assumption that anxiety and disease are separate processes. Anxiety needs to be viewed as a multidimensional experience within an integrated whole.
Cancer and serious illness are experienced within a continuum ranging from positive to negative in terms of adjustment. Positive adjustment is the patient’s psychosocial adaptation process or increased ability to cope. Negative adjustment is the patient’s inability to cope or the presence of anxiety and mental disorders that may require professional treatment.17,18
Life and serious illness need to be understood as a whole, not as separate entities. The role of the APRN is to understand and address anxiety from an interdisciplinary team perspective and to support adjustment from a medical and holistic perspective.
Integration of Chronic Illness
Palliative care professionals encourage patients and families to focus on living rather than on their illness. The patient’s life and illness are not separate but coexist in a way that can be balanced, meaningful, and purposeful, integrating the illness into a whole that also includes the patient’s many roles, responsibilities, personal identity, and life experiences.19 Integration is not just a matter of incorporating disease management into one’s daily activities but rather integrating the disease experience physically, mentally, emotionally, and spiritually.18
The clinical courses of cancer are prediagnosis, diagnosis, treatment, post-treatment, remission, reoccurrence/palliative care, and survivorship.18 Within each clinical course there is an anxiety experience, normal adjustment and support, and an adjustment period.20 Anxiety and adjustment are natural parts of the illness experience. The clinical courses should not be considered as separate entities but rather as an ongoing experience of anxiety, challenges, and adjustment (Tables 31.4, 31.5, and 31.6).
Table 31.4 Summary of Adjustment Stages When Diagnosed with Cancer: Pre-Diagnosis and Diagnosis
From reference 21.
Table 31.5 Summary of Adjustment Stages When Diagnosed with Cancer: Treatment, Post-treatment, Remission
3) Adjustment period: Variable
3) Adjustment period: Variable
3) Adjustment period: Variable
Table 31.6 Summary of Adjustment Stages When Diagnosed with Cancer: Palliative Care & Survivorship
From reference 21.
Anxiety adjustment goes beyond the natural state of adaptation, coping, and integration. Adjustment outcomes have been identified in different categories, such as healing, psychosocial and spiritual pain in palliative care, posttraumatic growth, stress- related growth, benefit-finding resilience, subjective well-being, and self-actualization.21,22,23
Life-transforming change can result from the illness experience. Some patients experience a total paradigm shift, where unanticipated discovery of personal abilities and untapped resources helps the patient overcome the challenges of cancer and life challenges outside of cancer. With this shift, the patient’s life is taken to a previously unknown level where he or she experiences a more fulfilling, purposeful, and meaningful life, with greater depth psychosocially and spiritually (Fig. 31.2).
Some patients describe a reduction in negative experiences; others identify an increase in positive experiences. These changes can occur in the areas of self-care, relationships, spirituality, being true to oneself, personal strength, and priorities or purpose. The “domains” of this change are pre-cancer, cancer, adaptive beliefs and attributes, pragmatic actualization, and transformation. Each domain has its own categories and process themes.19
Pre-cancer’s category is trauma and healing. The process theme focuses on the pre-cancer state and diagnosis as a challenging event.
The domain of cancer has three subcategories: debilitation, challenges to normal life, and coping. The debilitation subcategory focuses on the process themes of cancer symptoms and treatment side effects. The challenges to normal life subcategory focuses on the process themes of uncertainty, heightened awareness, and loss. The major view expressed by patients in this subcategory is, it’s not just about the cancer. Support comes in the form of education and lowering distress.
The adaptive beliefs and attributes domain has two subcategories: personal life and hope. Personal life focuses on the process themes of maintaining a personal life, tolerance, and the expectation that life could be improved, mastery of life skills, and improved situational challenges. The hope category’s process themes focus on motivation, protection, surrounding oneself with people who provide support, and offer grounding in personal truth and what is found as meaningful.
The domain of pragmatic actualization entails turning hope into reality. It has two subcategories: exploring and resources. Exploring focuses on the process themes of proactive learning, research, personal decisions and choices, and active experimentation. The resources subcategory focuses on gathering and giving in a wide range of meaningful relationships, unexpected resources, expanded spirituality, and conservation of resources in times of greater need.
The domain of transformation focuses on a recurrent process theme, it’s not just about the cancer, in terms of applying newly discovered personal resources and heightened skills to non-cancer issues. Applying these new-found personal resources and abilities ultimately leads to a greater sense of gratitude, life appreciation, and empathy and a higher interest in life-fulfilling pursuits.19
Screening and Assessment
The sequential screening, evaluation, and referral process is undertaken when anxiety or psychosocial issues arise. A variety of screening tools are available based on the patient’s presentation. Screening may include a brief, self-report questionnaire method. The patient’s score establishes the level and severity of distress to guide the next steps. If the distress is high, a referral for an in-depth psychosocial assessment by an appropriate mental health professional is made.24
Screening and assessment are not just patient-focused but are also family-focused based on the standards of the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines.25 Family members are the most common caregivers and their needs often go unaddressed. Many are easily overwhelmed physically, mentally, socially, and financially. Caregiver stress and burden can lead to increased health risks in terms of heart disease, hypertension, immune impairment, and cognitive functioning that may meet DSM-V criteria for a psychiatric condition.26 When assessing caregivers, the APRN should identify the specific problems, needs, strengths, and resources they have for themselves and those that affect the patient’s care.27
Communication with patients and family members and their participation as partners in care are key. By partnering with them, the APRN can identify their needs and set out the next steps. The patient and family are part of the process, since assessment is a combination of self-report and evaluation by members of the professional team. This approach to assessing caregivers’ needs and strengths can improve the overall health and quality of life for both the patient and caregivers.28 The five major components of the caregiver experience that provide insight into caregiver stress are caregiver context, primary stressors, secondary stressors, resources, and outcomes.29
Caregiver context addresses sociodemographic information, history of illness, and caregiving and living arrangements. Primary stressors from the patient experience are symptoms, impairments, activities of daily living, behavioral and cognitive issues, and the caregiver’s subjective burden. Secondary stressors are tension and conflicts of employment, relationships, and maintaining roles and responsibility. Resources are social, financial, emotional, and gains from experience. Outcomes are either positive or negative health outcomes related to the caregiver.8
The National Caregiver Alliance sponsors the National Center on Caregiving, which provides support and guidance in the development of policy, resources, and programs. It serves as a central source on caregiving and long-term care issues.30
The expression of, assessment for, and interventions for anxiety are placed in the cultural and spiritual domains of the National Consensus Project Clinical Practice Guidelines. Domain 5 addresses spiritual, religious, and existential aspects of palliative care. Domain 6 addresses cultural aspects of care.1 Inappropriate or incomplete awareness of cultural, religious, and spiritual beliefs or needs can lead to inappropriate and unacceptable plans of care, resulting in unnecessary and undue anxiety and distress.
To complete the comprehensive anxiety assessment processes and psychosocial spiritual screening and assessments, a physical examination is appropriate; it could reveal anxiety-associated medical conditions, emergent pathophysiology, and medications and substances whose side effects mimic anxiety.
The palliative care approach to treatment, occurs across a continuum with many different and simultaneous dependent, independent, and collaborative team approaches and interventions.
Table 31.7 Anxiety-Causing Medications and Substances
Alcohol and nicotine withdrawal
Bronchodilators and sympathomimetics
Corticosteroids and anabolic steroids
Antihistamines and decongestants
Sedatives (hypnotic withdrawal and paradoxical reaction)
Anesthetics and analgesics
Benzodiazepines (and their withdrawal)
Table 31.8 Common Pharmacologic Treatment Options of Anxiety
Approximate daily dose/ranges (mg)
Long-acting; rapid onset with single PO dosage
Short-acting; multiple routes, PO, SL, IV, IM, no metabolites
Extended time to peak effect similar to antidepressants
Serotonin Reuptake Inhibitors
New warning from U.S. Food & Drug Administration about doses above 40 mg
Longest half-life among serotonin reuptake inhibitors
Least sedating tricyclic antidepressant
Oral disintegrating tablets available
Preferred for patients with Parkinson’s disease
Inexpensive and multiple routes of administration (IV, PO, and IM)
Risk of anticholinergic side effects and delirium
a In divided doses
From reference 5.
Most antidepressants are effective for treating anxiety, but full benefit may take several weeks, and lower doses are tolerated best. Many clinicians treating anxiety disorders use selective serotonin reuptake inhibitors (SSRIs) as their first choice due to these agents’ reliability and effectiveness for panic, generalized anxiety disorders, post-traumatic stress disorder, and obsessive-compulsive disorder. Common side effects are managed with low dose titration, and SSRIs have no adjuvant therapeutic effect on pain unlike serotonin-norepinephrine reuptake inhibitors.5 Tricyclic antidepressants are effective and inexpensive, and serve as an adjuvant for neuropathic pain. Tricyclics can promote sleep and appetite but have a high side-effect burden.
Benzodiazepines are commonly used for the relief of acute anxiety. They have a rapid onset and can reduce nausea, but they are toxic if overdosed, and can suppress respirations, especially in patients with lung disease, and can cause cognitive impairment.31 There are risks for abuse and addiction with benzodiazepines, but they are effective in the long term. Use of long-acting agents can prevent the loss of efficacy that can occur with shorter-acting agents.
Antipsychotics are reliable, but long-term use can produce the side effect of movement disorders. This risk makes them a second-line treatment. They are valuable when a rapid anxiolytic effect is needed and if patients cannot tolerate benzodiazepines or have respiratory compromise.32
The geriatric population has special considerations, and medication adjustments are required. Treatment of anxiety often reflects the balance between goals and the length of time remaining in life. This is especially true in geriatric palliative care evaluation and treatment. For patients with less than a few months to live who are minimally ambulatory, the APRN can prescribe benzodiazepines for rapid relief of symptoms or brief treatment. They are considered a second-line drug based on their longer half-life, which causes adverse drug effects. Benzodiazepines overall have a paradoxical effect that may actually cause more anxiety, especially in the elderly, and are not recommended because they can increase confusion. Typically, tricyclic antidepressants and beta-adrenergic agents are not well tolerated. The most common side effects in the elderly are ataxia, cognitive impairment, and excessive sleepiness. Opioids are indicated for treatment of anxiety secondary to dyspnea in terminally ill patients.33 Antidepressant therapies are often indicated, and cholinesterase inhibitors may be beneficial.
Nonpharmacologic therapies used for anxiety are outlined in Table 31.9.
Table 31.9 Nonpharmacologic Anxiety Treatment
Posture & Mobility
Touch & Body Work Energetic Therapies
Palliative care includes holistic integrative therapies as well as conventional therapies. Holism and palliative care philosophy are inseparable since they both focus on the total person, with the belief that the mind, body, and spirit are inseparable and interdependent and that health, illness, and dying are manifestations of the life processes of the whole person.33,34,35,36,37,38 In both holistic and palliative care, the partnership among the patient, family, and provider generates a sense of empowerment and enables healing (if not necessarily a cure) and transcendence.
There are many integrative holistic therapies that can be used to decrease anxiety. They can improve the overall quality of life for patients and families. Maximum benefits with minimal risk can be achieved when complementary/alternative medicine and therapies are integrated with conventional treatments. This can be accomplished through collaborative interdisciplinary team processes as a component of the overall plan of care (Table 31.10).
Table 31.10 Integrative Holistic Treatment of Anxiety
Integrative Holistic Providers
Palliative care is a comprehensive, evidence-based specialty, provided by a supportive interdisciplinary team, that addresses patient- and family-centered needs. Whether the illness is life-threatening, chronic, progressive, advanced, or terminal, the identification and the management of anxiety are central to effective treatment. Anxiety is a common response in patients and family members and is manifested in various physical, affective, behavioral, and cognitive responses. Palliative care incorporates anxiety in professional practice standards with the goal of anticipating, identifying, assessing, and addressing it via core and interdisciplinary team approaches.
Mr. S was a married 61-year-old male Russian immigrant who was self-employed in the construction industry. He had no children and enjoyed traveling with his wife. He was a practicing Catholic but did not have an identified community church. He engaged in mind–body practices and coped with hardship using rituals and clear next steps. The palliative care team followed Mr. S for 2 years from his diagnosis of cancer to his death. At diagnosis, he underwent a thoracotomy, with subsequent pain and anxiety resulting from his new diagnosis of cancer. After the palliative APRN did a thorough palliative care evaluation, his anxiety was initially treated with lorazepam 0.5 mg q6h PRN and acupuncture for pain and anxiety. He also engaged in spiritual ministry.
Several months after diagnosis, Mr. S developed metastatic mesothelioma and was placed on an experimental protocol. His chest pain and dyspnea had increased significantly, and he was extremely anxious when hospitalized for hypercapnic respiratory failure. He was significantly fatigued due to lack of sleep. He was intubated and then sent home on BiPAP, which he remained on for the rest of his life. Duloxetine was started and lorazepam was discontinued by the palliative APRN. Hypnosis was started for the anxiety and acupuncture was continued for pain, anxiety, and fatigue. Several months later, Mr. S discontinued chemotherapy and continued aggressive palliative care.
Two months before his death, Mr. S presented to the ED with severe respiratory distress and was admitted to the ICU with hypercapnia. At this time, the settings on his BiPAP were changed. The palliative APRN visited Mr. S in the ICU to assess how he was doing. He said, “Physically, I am weak because I am dying. But emotionally and spiritually I am great.” When the nurse asked what happened, the patient said, “Dying people should not be in an ICU, but I have been transformed.” That day he was clearly not anxious and was able to speak to his wife, telling her how much he loved her. He received acupuncture and spiritual ministry. His wife received counseling for her anxiety until his death.
One month before his death, Mr. S was seen in the pain and palliative care outpatient clinic. He was very weak and fatigued and could not sleep. When he stated he was scared to use his BiPAP, the palliative APRN explored this with him. When asked if he was scared he would die at night, he said yes. At this time, the team provided Mr. S with information about the dying process, after which he felt comforted, less frightened, and less anxious. The APRN knew he liked rituals so she framed the conversation about BiPAP as a ritual. Mr. S devised a nightly ritual in which his wife would help him put the machine on his face and then kiss him goodnight. Mr. S and his wife found this meaningful and the ritual continued until his death. Mr. S died at home with his wife at his side. Mrs. S was followed by the bereavement program.
The case study summarizes the APRN’s integrated and collaborative role within the palliative care team. In her roles as clinician and educator, this palliative APRN employed expertise in clinical treatment interventions, communication, listening, and compassion to initiate and maintain a trusting relationship with this patient and family. After conducting a comprehensive assessment, the APRN developed a holistic and purposefully aligned treatment plan. As the patient’s and family’s needs changed, the treatment plan was adjusted. The continuity of care was coordinated over time in multiple care settings from diagnosis until death. The palliative APRN and her palliative care colleagues were successful in managing the patient’s anxiety, pain, and respiratory distress, honoring the wishes of the patient and his wife for information and taking advantage of their past success with rituals. They created an opportunity for transformation at the end-of-life by directing care and treatment toward spiritual healing rather than disease cure. Palliative APRNs, as members of the interdisciplinary team, are prepared to deal with physical, psychological, social, and spiritual suffering using both pharmacologic and complementary approaches to the management of anxiety.
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