Awareness of the finiteness life is heightened for aging people as they experience loss of family members and friends through death. The diagnosis of a terminal illness makes cessation of life an inevitable certainty. This acute awareness of mortality can spur older adults to examine the meaning of life, which can lead to spiritual growth or spiritual distress (Eliopoulos, 1987). Of all the aspects of human development through the aging process, the spiritual dimension is one that continues to grow, rather than decline, in later years, as do the physical and mental dimensions (Heriot, 1992). Research has demonstrated that older adults are very interested in their spirituality and, specifically, in their spiritual growth (Lucas, Orshan, & Cook, 2000; Stockert, 2000).
Spirituality for older adults is rooted in community, reflecting the importance of interpersonal relationships. Relationships with oneself, others, and God or a higher power provide a sense of belonging and support that can minimize feelings of loneliness and despair experienced during a terminal illness. Spiritual awareness increases with age and can thus provide older adults a sense of hope and support while coping with a terminal illness (Moberg, 2005).
Terminal Illness and Risk for Spiritual Distress
Older adults diagnosed with a terminal or life-threatening illness, such as renal failure, heart failure, or advanced cancer, are at risk for experiencing spiritual distress. The North American Nursing Diagnosis Association International (NANDA) (2005) defines spiritual distress as “the impaired ability to experience and integrate meaning and purpose in life through connectedness with self, others, art, music, literature, nature, or a power greater than oneself” (p. 177). Spiritual distress is also referred to in the literature as spiritual pain, spiritual suffering, and spiritual disequilibrium. A recent analysis of the concept identified negative consequences of spiritual distress in adults with cancer as a false sense of hope, increased somatic complaints and symptom distress, harm to self, and suicide (Villagomeza, 2005).
In addition to a diagnosis or treatment of a terminal or life-threatening illness, clinical and research findings have identified the following as risk factors for the development of spiritual distress in older adults (Head & Faul, 2005; NANDA, 2005; Villagomeza, 2005):
- Alterations in usual social support networks.
- Conditions that interfere with the ability to practice spiritual or religious practices (e.g., institutionalization, physical impairments).
- Events that lead to the questioning of one’s faith.
- Verbalizing interpersonal or emotional suffering.
- Development of cognitive impairment (e.g., brain injury, dementia).
Although these risk factors apply to all older adults, the presence of these conditions in conjunction with an incurable illness makes older adults more vulnerable for spiritual distress.
Older adults who express feelings of impaired meaning and purpose in life, peace, or faith are experiencing spiritual distress. Additional characteristics of spiritual distress include feelings of anger, guilt, and ineffective coping with life events (Head & Faul, 2005; NANDA, 2005; Villagomeza, 2005). O’Brien (2003) described additional characteristics of spiritual distress as a deep sense of hurt from being separated from God, a sense of personal inadequacy before God and man, and a pervasive condition of loneliness of the spirit. The presence of these feelings in older adults with a terminal illness indicates spiritual distress and warrants a thorough assessment.
The following assessment criteria can be used to identify at-risk older adults with a terminal illness who are likely to benefit the most from use of this evidence-based guideline (McClain-Jacobson et al., 2004; Murray, Kendall, Boyd, Worth, & Benton, 2004; Villagomeza, 2005):
- Inability to engage in spiritual or religious practices.
- Expressing frustration, fear, hurt, or doubt.
- Expressing feelings of loneliness and isolation.
- Expressing lack of hope or feeling life is not worthwhile.
- Expressing feelings of losing control.
- Verbalizing questions about faith or loss of faith.
- Expressing emotional suffering, such as lack of meaning, guilt, or anger.
- Evidence of anxiety or depression.
- Expressing a desire for death.
- Suicidal ideation.
Several tools are available to assess patients with spiritual distress related to having a terminal illness. To effectively assess patients at risk, nurses must examine the patient for feelings of spiritual distress, loneliness and social isolation, hopelessness, anxiety, and depression.
Recent research has increased awareness that a sense of spiritual well-being has a positive impact on emotional well-being and adjustment to illness (McClain, Rosenfeld, & Breitbart, 2003; Mc-Clain-Jacobson et al., 2004). Spiritual distress has been associated with poorer outcomes, including emotional despair, depression with suicidal thoughts, and substance abuse (Larson & Larson, 2003; Pargament, Koenig, Tarakeshwar, & Hahn, 2001).
One tool useful for clinical assessment of the level of spiritual well-being is the Functional Assessment of Chronic Illness Therapy-Spiritual (version 4) (Cella, 1997). This tool consists of 12 items assessing specific aspects of spiritual well-being, including meaning and purpose in life, faith, and peace. Items are rated on a 5-point scale of agreement or disagreement and summed together, with higher scores indicating higher levels of spiritual well-being.
Loneliness and Social Isolation
More than 40% of older adults experience occasional feelings of loneliness, and more than half of those age 80 and older report feeling lonely (Pinquart & Sorensen, 2001a). From a meta-analysis of 149 studies, characteristics of older adults who experience more feelings of loneliness were identified as being a woman, having low socioeconomic status, having low competence in terms of activities of daily living, and living in a nursing home (Pinquart & Sorensen, 2001b). Because of the high incidence of loneliness in older adults, it is especially important to assess for feelings of loneliness and social isolation in those who have been diagnosed with a terminal illness.
Loneliness and social isolation have been examined in older adults by multidisciplinary qualitative and quantitative research. McInnis and White (2001) reported that community-dwelling older adults believed their loneliness stemmed from their fear of becoming dependent on others and chose to keep silent about the extent of their lonely feelings. Both of these characteristics are relevant in providing spiritual care to terminally ill individuals, as fear and silent suffering can intensify spiritual distress in the face of a terminal illness. People with AIDS report experiencing more loneliness and spiritual distress than do people with cancer; a study by Pace and Stables (1997) also found that having social support and connectedness predicted higher levels of spiritual well-being.
Older adults who have recently experienced a loss, such as the death of a spouse or loved one, loss of their health, or loss of independence, are at risk for feeling lonely (Adams, Sanders, & Auth, 2004; Jongenelis et al., 2004; Pinquart & Sorensen, 2003). In addition, older adults who receive help with daily activities or have functional limitations are also vulnerable to being socially isolated (Hellström, Persson, & Hallberg, 2004).
Loneliness and social isolation in older adults can be identified through a thorough nursing assessment. Asking a general question about feelings of loneliness or social isolation will provide important information about the presence and severity of lonely feelings. One assessment question on loneliness is, “On a scale from 1 to 5, with 1 being none and 5 being severe, how would you rate your level of loneliness right now?” In addition, nurses can listen for expressions of isolation, rejection, or abandonment by friends or family members, especially after the diagnosis of terminal illness (Ladwig, 2006).
A review of the literature shows a multidisciplinary examination of the impact of hope on healing, adaptation to illness, and quality of life (Dunn, 2005). Christian theology indicates that hope has existed since the creation of humankind (Lynch, 1965). The opposite of hope is a sense of hopelessness, described as occurring when a situation is experienced as insurmountable and when no change is expected in relation to an illness. Feelings of hopelessness can occur when a person is diagnosed with a terminal illness and must come to terms with the prospect of dying. What causes hopelessness may not be their approaching death but rather the sense of not fully participating in their life.
Parker-Oliver (2002) provided the following questions to guide the assessment of hope and hopelessness in people who are terminally ill:
- What is causing the dying person to be fearful?
- What is the status of the person’s key relationships? Do any relationships need mending? Is there “unfinished business” in any relationships?
- What spiritual resources do the person and his or her family have? Does their spiritual belief system offer them hope for a future or meanings for their situation?
- What has previously had meaning for the dying person?
- What are the goals of the dying person? Does the person see a legacy?
- What is the attitude of the person’s caregivers? Do they view the current reality as one of opportunity or view it with dread?
- How has the physician worked with the person? Does the physician offer the promise of hope?
The tool most appropriate for assessing terminally ill older adults in clinical practice is the Herth Hope Index, a 12-item abbreviation of the Herth Hope Scale, which specifically assesses hope in individuals who are ill and determines change over time in the clinical setting (Herth, 1992).
Although anxiety is common among people with terminal illnesses as a natural reaction to impending death (Jackson & Lipman, 2004), anxiety may also be a symptom of spiritual distress (Kuebler & Heidrich, 2002). Individuals with a terminal illness may also have an underlying anxiety disorder as a separate illness or may have anxiety as a result of untreated or undertreated symptoms associated with the terminal illness, such as pain, or have anxiety along with depression (King, Heisel, & Lyness, 2005). For the purposes of this guideline, the assessment of anxiety is based on observation of behavior, clinical symptoms, and the older adult’s self-report of feelings.
Kuebler and Heidrich (2002) and Jackson and Lipman (2004) indicated that individuals undergoing a clinical assessment of anxiety may express the following feelings: apprehension, uneasiness, fear, worry, impending doom, tension, nervousness, irritability, restlessness, powerlessness, loss of control, helplessness, and anger. In addition, older adults may experience changes in attention level, inability to concentrate as anxiety increases, and physical discomfort, such as headache; neck, chest, or back pain; nausea; palpitations; and hot or cold flashes. Behaviors indicative of anxiety include tense posture, fidgeting with hands or clothing, jiggling feet, trembling, licking lips, dry mouth, frequent sighing, insomnia, being either more talkative or quieter than usual, higher-than-normal voice pitch, and shaky voice. Physical signs of anxiety are increased heart rate, respiratory rate, and systolic blood pressure; sweating, flushing, or pallor of skin; dry mouth; dilated pupils; urinary urgency or frequency; diarrhea; and fatigue.
Ten percent to 25% of terminally ill adult cancer patients meet the diagnostic criteria for major depression, and another 10% to 15% have less severe symptoms of clinical depression (King et al., 2005). Spiritual distress is a risk factor for depression (Kuebler & Heidrich, 2002; Villagomeza, 2005); thus, depression in terminally ill adults indicates the need to assess and intervene for spiritual distress. Block (2000) identified numerous psychological and physical indicators of depression in terminally ill adults, including dysphoria, depressed mood, sadness, tearfulness, lack of pleasure, hopelessness, helplessness, worthlessness, social withdrawal, guilt, suicidal ideation, intractable pain or other symptoms, excessive somatic preoccupation, disproportionate disability, and poor cooperation or refusal of treatment.
Several challenges exist in assessing depression in older adults with a terminal illness. The first challenge is to distinguish depression that may occur as a normal reaction to a terminal illness from clinical or pathological depression. Depression that occurs as a normal reaction to the diagnosis of a terminal illness and anticipated loss and grief can be assessed by the severity, duration, and pervasiveness of the mood symptoms. Individuals with a depressive disorder frequently have more severe and constant mood symptoms and may express a nearly complete lack of interest in activities and a pervasive sense of hopelessness (King et al., 2005). Another challenge to identifying depression in terminally ill patients is distinguishing depression from the pathology of the terminal illness, such as chemical imbalances or physical pain.
Robinson and Crawford (2005) developed an algorithm to identify depression in adults in palliative care to overcome the shortcomings of available screening tools. The Short Screen for Depression Symptoms consists of a series of five questions to ask when assessing older adults. The algorithm is recommended because of the simplicity of administration and the intent of the assessment, which is to identify individuals in need of follow up for depression.
Practices to Relieve Spiritual Distress
Effective interventions for relieving spiritual distress in terminally ill older adults focus on the core feelings of loneliness, social isolation, hopelessness, anxiety, and depression. Although these interventions are not unique to this population, the evidence base reviewed for the interventions focused on terminally ill older adults.
Connectedness, feeling emotionally involved with others, is an innate human quality and powerful motivator for creating and maintaining relationships with other people. Without connectedness, people experience social isolation, deficits in belonging, and lack of meaning in life (Townsend & McWhirter, 2005). Feeling connected to others provides people with protection from feelings of isolation and depression. Any disruption in connectedness can cause psychological, social, and physical disturbances (Lee, Draper, & Lee, 2001).
Easing Loneliness. Little research has been conducted on the effectiveness of interventions for loneliness and social isolation. With terminal illnesses, older adults usually have diminished mobility and sensory limitations, which can compound their social isolation and lead to loneliness (Pinquart & Sorensen, 2001b). Needing assistance from others places extra strain on existing relationships and can impede the emotional needs of the older adult from being met. Suggested interventions for those expressing loneliness are to include family members in activities and plans, help the older adult learn new coping strategies, and refer the patient to a mental health provider for individual psychotherapy (McInnis, 1999).
Although not specifically written to address terminally ill older adults, Burkhardt and Nagai-Jacobson (2005) suggested the following strategies to promote connectedness: encourage family and friends to visit the person; place photographs, pictures, and mementos from loved ones within view of the patient; talk about the special places, pets, and things that are meaningful to the patient; bring pets to visit; encourage visits from people in community groups (e.g., faith community, social, business, school, interest groups); connect with the environment by going outdoors, sitting near a window, placing flowers or pictures of meaningful nature scenes in the room; and connect with God through the practice of meaningful religious rituals.
Referring to Mental Health Providers. In a meta-analysis of interventions for older adults with depression, Pinquart and Sorensen (2001a) found cognitive-behavioral therapy and control-enhancing interventions the most effective psychotherapy for improving sense of well-being. In addition, individual interventions were found to be much more effective than group interventions.
Cognitive-behavioral therapy includes changing maladaptive beliefs to adaptive thinking and behaviors by challenging negative thoughts, developing problem solving abilities, and encouraging participation in enjoyable activities. Control-enhancing interventions focus on providing older adults control over their personal activities, such as the structure of their day and completion of their activities of daily living. Also, long-term interventions, those lasting more than 10 sessions, were found to be more effective than interventions with a shorter duration. Pinquart and Sorensen (2001a) concluded that therapists with gerontological or geriatric training were more effective leading these interventions than were therapists without specialized training with older adults.
Palliative or hospice care is a valuable community resource offering holistic and interdisciplinary care that is uniquely attuned to the needs of individuals at the end of life. Patients receiving end-of-life care from hospice or palliative care providers report a reduction in anxiety, as well as better symptom management and better quality of life (Corner et al., 2003; Solà, Thompson, Subirana, López, & Pascual, 2004). Pastoral care is typically included in the interdisciplinary care team; therefore, issues giving rise to spiritual distress are considered in the plan of care.
Enhancing Physical Connectedness. Physical touch, music, massage, and aromatherapy have been used in palliative care primarily as relaxation or stress-reduction interventions that have short-term effects (Hemming & Maher, 2005). Descriptions of these interventions are provided below:
- Physical touch provides a powerful sense of connection, yet may be as simple as hand-holding or an arm around the shoulders, and may be provided by family, friends, or caregivers (Burkhardt & Nagai-Jacobson, 2005).
- Touch and massage, with or without aromatherapy, have been used to ease anxiety in nursing home residents and individuals with dementia, pain, and anxiety (Fellowes, Barnes, & Wilkinson, 2004; Robinson, Weitzel, & Henderson, 2005). Massage may be provided by massage therapists, physical therapists, or nurses. In the study by Robinson et al. (2005), nursing assistants provided backrubs that followed the institution’s backrub protocol. The backrub was the most requested aid for promoting sleep among patients.
- Aromatherapy, with or without massage, has been used to achieve short-term relief of anxiety in patients with cancer and in palliative care (Kohara et al., 2004; Kuriyama et al., 2005; Okamoto et al., 2005). However, aromatic oils should be used with caution due to the pharmacodynamic properties of oils and their potential interaction with other pharmcotherapeutic agents the older adult may be taking. Scented oils also have the potential of skin irritation, along with allergic reactions in individuals who are sensitive to chemicals; thus, training in the proper use of oils is essential (Dunning, 2005; Hemming & Maher, 2005; Lee, 2003; Maddocks-Jennings & Wilkinson, 2004; Perez, 2003; Thomas, 2002).
- Music has long been associated with having a calming effect (Salmon, 2001). Studies of the use of music therapy with hospice patients demonstrated positive effects on relaxation, ability to cope with anxiety, and promotion of communication with family members, and serving as a source of comfort, renewal, and release (Hilliard, 2001; Krout, 2001, 2003; Magill, 2001; Salmon, 2001). Music was effective whether provided live by a music therapist or by recording.
A key to using music to enhance relaxation is to have individuals select music that is meaningful or important to them. If the older adult is unable to communicate music preference, a family member may be able to provide that information. Gerdner (2007) included the following specific strategies for selecting music to be used in a therapeutic way: ascertain the importance of music for the individual prior to illness; discuss specific music preferences, including song titles, performers, whether it is vocal or instrumental, the kind of instrument (e.g., piano, organ, guitar, orchestral), and genre; and use music from the individual’s own music collection when feasible.
Research has found that hope is present even when a person is close to dying (Buckley & Herth, 2004). The dying person should not experience feelings of hopelessness and despair. Interventions for fostering hope in individuals who are terminally ill include helping the individuals foster affirming relationships, develop attainable goals, find meaning in their lives, live in the present, use their inner resources, reflect on uplifting memories, and appreciate their personal value (Herth, 1990; Post-White et al., 1996). Specific interventions recommended in this guideline for redefining and encouraging hope in terminally ill older adults are (Buckley & Herth, 2004; Cutcliffe & Herth, 2002; Davis, 2005):
- Develop caring and continuing interpersonal relationships with patients and their caregivers to facilitate a strong sense of belonging.
- Use inner spiritual resources to facilitate development of meanings and the creation or implementation of important rituals and traditions.
- Address the fears of the dying individuals with specific activities and coping strategies as part of a care plan. Use reminiscence and life review therapies to identify coping skills that have been successful in the past.
- Encourage patients to mend damaged relationships, say good-bye to family and friends, give and receive forgiveness, and express their feelings openly.
- Work with dying patients to help them achieve their goals, by asking them what they most want and creatively working toward helping them get it.
- Use past experiences and systems of meaning to understand values and reinforce coping skills for the patient and family/caregivers.
- Identify significant losses that may be contributing to feelings of hopelessness.
- Consider palliative or hospice care.
- Work with the physician to assure dying patients that they do not need to die alone or be uncomfortable and that, if requested, their life will not be prolonged with artificial life support measures.
- Create environments that ensure adequate rest and relaxation for older adults.
- Help dying patients and their caregivers find ways to ensure the patients will be remembered.
- Encourage caregivers to find meaning in the dying process.