Sandra Henderson, a 32-year-old African American woman, presents to a survivorship clinic five months after completing treatment for cancer of the left breast. (This case is a composite based on our experience.) Ms. Henderson's course of treatment included chemotherapy, mastectomy, and radiation. Ms. Henderson works full time and has medical benefits through her job.
During her intake interview with a nurse at the survivorship clinic, Ms. Henderson expresses several concerns suggestive of distress. She tells the nurse that while she continues to worry about the same issues that troubled her when she was initially diagnosed with cancer—paying off her medical bills, keeping up with her work, and advancing her career—she feels cancer has changed almost everything else about her life. She often naps after work and no longer joins friends for dinner. Although her friends and family members tell her she looks great and encourage her to start dating again now that she's “beaten cancer,” she confides that she's nervous about starting to date because she'll need to disclose her cancer history and manage intimacy as a “woman with one breast.” She tells the nurse she feels frustrated because she sees herself as different from the person she was before the cancer diagnosis and isn't sure she can ever be that person again.
She says that having had cancer has changed even her spiritual practices: she no longer attends church services, feels she's losing hope, and finds it difficult to think about the future. She recalls that when her work supervisor asked her, “Where do you see yourself in three to five years?” she answered, “I have no idea; I can't think that far ahead.” She tells the nurse that no one understands her—that her worries are not typical of her peers. “God is testing me,” she says. “I lost a critical year of my life, and now I can't move forward. I feel stuck. My life is passing me by, and I don't know what I'm supposed to do anymore.”
The feelings Ms. Henderson describes illustrate “distress in cancer,” which the National Comprehensive Cancer Network (NCCN) defines as unpleasant psychological, social, physical, or spiritual experiences that may interfere with the ability to cope effectively with life after cancer diagnosis.1 Of the 15.5 million cancer survivors in the United States,2 more than 67% have passed the five-year survival point.3 But even among survivors who remain cancer free, the distress brought on by the effects of cancer and its treatment are often lifelong.
Distress among cancer survivors may stem from the cancer diagnosis, its residual impact on the survivors' sense of control or self-efficacy, and unmet informational needs, all of which can reduce quality of life.4 Distress may present as fear, sadness, anger, concerns about the future, financial worries, and spiritual or existential concerns.1 Severity of distress can range from normal fears and sadness to debilitating depression, anxiety, social isolation, or spiritual crisis.1
The NCCN, National Cancer Institute (NCI), and National Consensus Project for Quality Palliative Care (NCP) endorse the routine assessment and documentation of distress among cancer survivors across the care continuum in all health care settings, followed, if necessary, by appropriate intervention.1, 5, 6 However, while the clinical literature is replete with guidance concerning psychological, social, and physical aspects of distress among cancer survivors, the spiritual components of distress have received less attention. Clinicians often neglect to explore survivors' spiritual well-being, though it has been identified as an important factor in health-related quality of life and is significantly associated with cancer survivors' enjoyment of life despite high levels of pain or fatigue.5, 7 This article describes the concept of spiritual distress, explaining how and why it may manifest, even in the absence of religious belief. It further provides evidence-based recommendations for assessing and managing spiritual distress in cancer survivors and illustrates how nurses can incorporate such guidance into practice.
THE CONCEPT OF SPIRITUAL DISTRESS
Spiritual distress is a broad concept that is not necessarily associated with any specific religious beliefs, practices, or affiliations. Spirituality encompasses a wide variety of relationships that impart a sense of meaning or purpose, such as felt connections to a higher power, nature, the world, humanity, or a religion. Both religious and nonreligious people may have a strong sense of spirituality.5 And spiritual well-being has been shown to correspond with the following aspects of health-related quality of life among cancer survivors7:
- lower levels of anxiety
- good health habits
- greater satisfaction with life
- better psychological adjustment
Nevertheless, a 2017 review of instruments used to assess supportive care needs among breast cancer survivors found that, of the 82 tools evaluated, only four (4.8%) addressed survivors' spiritual concerns.8 Building awareness among clinicians working in oncology and primary care of the importance of assessing survivors' spiritual well-being is essential to the provision of holistic care.
ASSESSING SPIRITUAL WELL-BEING
In order to assess spiritual well-being, clinicians generally need to identify the following patient factors6:
- spiritual or religious affiliations
- related beliefs, practices, and struggles
- sources of strength and support
- concerns about meaning and suffering
- cultural norms and preferences
- hopes, values, and fears
Given the established relationship between spiritual well-being and health-related quality of life, it is important to assess cancer survivors for spiritual distress. The NCCN recommends screening all survivors before clinical visits using the Distress Thermometer and the Problem List, which can help clinicians to, respectively, assess the level of distress and identify potential causes, including those of a spiritual nature.1 (See Table 1.1, 5, 6) This assessment usually occurs within the context of a sociocultural assessment of health beliefs and behaviors that is intended to promote the provision of culturally informed, interdisciplinary care.6 Interdisciplinary teams may include physicians, nurses, psychologists, and social workers, who operate either directly, through referral, or in collaboration with a professional chaplain.1, 6
Survivors may be uncomfortable talking about spiritual concerns with clinicians, but a 2007 survey of 369 outpatients at Saint Vincent's Comprehensive Cancer Center in New York City showed that, although more than half of cancer survivors felt it was appropriate for their clinician to inquire about their religious beliefs (52%) or spiritual needs (58%), only 9% reported that staff had asked about either.9 Clinicians are often reluctant to raise the issue of spiritual well-being and thus wait for survivors to voice any spiritual concerns. While this approach is effective in some cases, if the conversation never occurs, the survivor's spiritual needs may be unmet. To prevent this, the NCI suggests that clinicians ask survivors to complete a brief self-assessment on paper or simply ask survivors if they have experienced any spiritual or religious distress, thereby providing an opening for further discussion.5
The NCCN's Distress Thermometer and Problem List are commonly used together in health care facilities to quantify and identify the sources of a patient's distress. The Distress Thermometer prompts survivors to rate the level of their distress on a scale from 0 (“no distress”) to 10 (“extreme distress”), while the Problem List asks them to indicate any practical, family, emotional, physical, or spiritual problems they've experienced within the past week.1
The spiritual inquiry, which takes the form of a semistructured interview, is another approach to spiritual assessment. The SPIRITual History5, 10 and the Faith, Importance/Influence, Community, and Address (FICA) Spiritual History5, 11 are two such commonly used qualitative tools. Spiritual inquiry may include open-ended or directed questions, such as the following:
- Do you have spiritual or religious beliefs?
- Is there anything you'd like to share with me about your beliefs?
- Have your beliefs been affected by your cancer diagnosis and, if so, how?
- Have your spiritual beliefs influenced your health care decisions and, if so, how?
- Do you wish to learn more about spiritual resources?
Both quantitative and qualitative screening tools can provide clinicians with valuable information about the state of survivors' spiritual well-being, helping them identify survivor concerns and needs, or even potential factors that promote resilience (for a list of such tools, see Table 212-23). When selecting a tool to assess a survivors' spiritual well-being, consider whether the survivor
- believes in a god or gods.
- participates in any religious or nonreligious spiritual practice.
- is interested in measuring spiritual well-being or identifying spiritual needs.
MANAGING SPIRITUAL DISTRESS
The NCCN's recommendations for managing distress are focused on psychosocial components of distress, but they take into account spiritual and existential concerns, which may be significantly associated with distress in cancer survivors.24 While both the NCCN and NCP guidelines advocate interdisciplinary management of spiritual distress, including referral for chaplaincy care with a certified professional,1, 6 neither discourages assessment and management of spiritual distress by clinicians—and surveys cited by the NCI indicate that patients want clinicians to consider their spiritual needs and report lower satisfaction with care when spiritual needs are not met and improved quality of life when spiritual support is provided.5 Nurses in particular are trained to provide culturally congruent holistic care. Nurses can help patients surmount spiritual distress throughout cancer survivorship. Their approach should be informed by spiritual inquiry and by the cornerstones of managing spiritual concerns and needs, which have been identified in the literature1, 5, 6, 25-29 and are described as follows (see Figure 1).
Respect survivors' beliefs and follow their lead in discussing spirituality. Spirituality and religion are often related to culture, as described in the HealthCare Chaplaincy Network handbook Patients' Spiritual and Cultural Values for Health Care Professionals.25 It's therefore important for clinicians to familiarize themselves with survivors' cultural background, beliefs, and practices.
Acknowledge survivors' spiritual concerns. Spiritual concerns are as real as physical, psychological, and social concerns and should be managed as such. When a survivor communicates spiritual concerns, clinicians should reiterate an understanding of those concerns and of the impact they have on the survivor's life. Survivors grappling with questions about their life's purpose or with feelings of hopelessness or uncertainty should be referred to a mental health professional, social worker, or spiritual counselor.1
Be self-reflective. To effectively assess survivors' spiritual well-being, clinicians must assess their own feelings about spirituality, acknowledging any personal biases they may have and any preparation they may require to help them mitigate self-identified biases in advance of spiritual conversations.26 In this, as in many other aspects of care, failure to do so may contribute to patient discontent, inadequate adherence, poor health outcomes, and disparate health care.27 If unable to overcome bias in order to provide necessary care, the clinician should refer the survivor to appropriate supportive care services.
Empower survivors to identify spiritually informed goals for care and medical decisions. Information gleaned from the spiritual assessment should be used to facilitate conversations about goals for care and medical decisions. Among certain survivors, such practices may foster hope and be essential to their recovery from distress.28 For example, survivors might be encouraged to pray, meditate, or consult with a spiritual advisor before making decisions. Psychospiritual integrative therapy, an intervention that combines cognitive behavioral therapy, mindfulness, and meditation, may also be a viable option to assist cancer survivors with psychological and spiritual needs.29
Mobilize supportive care services. These may take many forms across health care systems and within communities. The clinician can suggest goals and options for care that honor the survivor's spiritual or religious views, such as speaking with religious or spiritual leaders with experience managing existential concerns.5, 6 As additional support, the clinician might refer survivors to either a clinical chaplain or a local support group that can help with spiritual issues.1 Survivors may prefer to seek spiritual guidance from a member of their community, especially if receiving treatment away from home. Palliative care teams may be consulted to identify programs with a specific care focus.
MS. HENDERSON'S SPIRITUAL ASSESSMENT
In accordance with clinic protocol, the nurse asks Ms. Henderson to complete the NCCN's Distress Thermometer and Problem List before meeting with the NP. Ms. Henderson rates her distress as a 3 on the 10-point scale, indicating on the Problem List that the sources of her distress are emotional and spiritual or religious problems. Based on these sources of distress, the nurse asks Ms. Henderson to complete a Patient Health Questionnaire-2 (PHQ2) form30 and a Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being Scale (FACIT-Sp).12 Her score of 2 out of 6 on the PHQ2 indicates no clinical depression, but her score of 32 out of 48 on the FACIT-Sp indicates spiritual distress. The nurse documents the results of these assessment instruments and notes in Ms. Henderson's medical record that, in conjunction with having symptoms of spiritual distress, Ms. Henderson was questioning the direction of her life, expressing loss of hope, and had mentioned that she no longer attends church services. Ms. Henderson then meets with the NP, who conducts an in-depth spiritual assessment.
The NP takes the time to try to understand and validate Ms. Henderson's concerns, telling her that “addressing spiritual concerns can be difficult, because it requires self-reflection about personal beliefs, your present life, and what the future may hold.” When the NP asks about Ms. Henderson's spiritual beliefs and practices, Ms. Henderson explains that she's Catholic and once attended mass every Sunday. Since she acknowledges previous involvement in religious activities, the NP encourages her to attend a church-based support group for cancer survivors and puts her in touch with a peer breast cancer survivor who assists other survivors in navigating available supportive care services. At the close of the survivorship visit, the NP reviews the prescribed spiritual distress management plan with Ms. Henderson, makes the referrals they had discussed, and recommends that Ms. Henderson return for a follow-up survivorship appointment within one month. The NP reminds Ms. Henderson to call the office if she has any questions or concerns, or if she decides she'd like a referral to a chaplain.
In the support group, Ms. Henderson finds several cancer survivors who let her know she is not alone in her concerns. They share stories about how they have fostered their faith and have begun to feel hopeful again. The group encourages Ms. Henderson to find time to enjoy nature and to meditate.
PROMOTING SPIRITUAL CARE
Distress among cancer survivors can be complex and multifactorial. Spiritual well-being is a well-known component of quality of life and is associated with better coping strategies. Clinicians must be willing to acknowledge patients' spiritual concerns during routine survivorship and primary care visits.5 Clinicians must also be equipped with evidence-based strategies to ensure that survivors' spiritual needs are met. In addition to making referrals to a chaplaincy or mobilizing supportive care resources, clinicians can play an active role in assessing survivors' spiritual needs and empowering them to identify spiritually informed goals for care and medical decisions.
Given the broad scope of spiritual concerns and the dearth of literature addressing spiritual support as a component of care, more research is needed to guide clinical care and educate clinicians on how to integrate the assessment and management of spiritual concerns and needs into care.
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For 20 additional continuing nursing education activities on the topic of cancer survivorship, go to www.nursingcenter.com/ce.