A cancer diagnosis and the treatment that follows can cause great physical and emotional distress. Regardless of cancer stage, patients are likely to experience fear and uncertainty about the risk of side effects, the effectiveness of treatment, and the outcome these factors will have on their future and their sense of who they are. These emotions begin at the time of diagnosis and continue and change throughout the course of having cancer. At the start of treatment, patients may ask, “Will I lose my hair? Will I feel normal? Will I still be able to work?” Although they may move past these initial fears and adapt to the routine of treatment, new and often more primal reasons will come up for feeling anguished, desperate, or hopeless.Treatment becomes both the patient’s private torment and sustaining hope. After prolonged periods of time, cancer treatments can begin to drain the patient’s well-being—not just physically and mentally, but spiritually as well. On the inside, the patient may start to feel as if everything in life that once brought pleasure, meaning, and hope has become entangled in isolation and spiritual crisis. Clinicians must equip themselves to integrate discussions about these issues into the standard of care in order to meet the needs of oncology patients.
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DEFINING SPIRITUALITY AND SPIRITUAL CARE
Spirituality is the process of human unfolding and a powerful force that searches for meaning and purpose in life.1 It is also defined as the center or core of humanness.2 Spirituality is not necessarily dependent on having religious preferences or beliefs. Common to all descriptions of spirituality and spiritual care are the concepts of meaning, wholeness, or completeness, the absence of which results in spiritual distress.3 Spiritual care involves compassion, presence, listening, and the encouragement of realistic hope, and it might not involve any discussion of God or religion at all.4-6 General spiritual care can be defined as recognizing and responding to the “multifaceted expressions of spirituality we encounter in our patients and their families.”4 Spiritual care is also defined as those practices that promote well-being, coping, growth, and relationships.7 Clinicians should initiate conversations about these issues to encourage patients to explore their beliefs, even those patients who are not sure of their religious beliefs or those who feel their beliefs are not addressed through organized religion. Spirituality is an individual experience that helps to define our humanity. It should be addressed with all patients at some level and should be readdressed as their condition changes.3
SPIRITUALITY AND HEALTH CARE
Nearly all medical treatments for cancer, including chemotherapy and radiation therapy, have negative side effects that add stress to the lives of cancer patients.8 Research has shown that persons who are living with a life-threatening illness become increasingly aware and sensitive to their spiritual selves and spiritual needs.9
For this reason, oncology patients need care that nurtures the soul, not just medical care to treat the cancer and manage the side effects of therapy. Spirituality may become increasingly important during the course of disease and its treatment as well as during remission. Spiritual care may be a key coping strategy for patients facing the various stress-ors associated with cancer, its side effects, and its potential threat to life.8
Spiritual distress and spiritual crisis occur when people are unable to find sources of meaning, hope, love, peace, comfort, strength, and connection in life or when conflict occurs between their beliefs and what is happening in their lives.10 When a life-threatening illness such as cancer is involved, spiritual wholeness can be defined as the patient’s ability to transcend physical discomfort, accept death, surrender to the transcendent, and feel at peace.3-4,11 In health care, research has indicated that religious and spiritual beliefs can affect a patient’s orientation towards life and the impact of stress on health.1 Integrating spiritual care practices into oncology care focuses the attention away from the cancer itself and onto the patient as a person who is separate from the disease. In addition, spiritual care can complement medical therapies by enabling patients to cope better with the physical aspects of their cancer and side effects of treatment. The extent to which spirituality can provide a sense of meaning and purpose in life has received inadequate attention, and its incorporation into the clinical setting remains rare.1-2
Increasing patient interest in spiritual care The incorporation of spiritual care into health care is not a new phenomenon. In medicine’s early days, spiritual leaders were the earliest “healers.”12 Current research indicates that a majority of patients would like medical providers to address the spiritual aspects of their illness and, moreover, 79% of US adults believe that spiritual faith can help people recover from illness or injury.1,4 Some patients have found that their spirituality provides them with the resources needed to withstand the physical and psychological crises bought on by the diagnosis and subsequent treatment of cancer.10
Oncology care providers are obligated, as part of holistic care, to acknowledge and encourage exploration of spiritual issues. They are in the ideal position to provide spiritual care because they are directly involved in the experiences that profoundly affect patients’ lives.3 In addition, the strong relationship they develop with their patients enables them to establish a connection and assess and assist with spiritual growth.3 Yet spiritual care practices in oncology appear to be fragmented as a result of professional silence and a lack of understanding about what these practices are.
The connections between spirituality and medicine are becoming stronger and more apparent.4 Qualitative approaches to studying spiritual concerns in patients with cancer have described the phenomenon in depth, providing health care professionals with a greater understanding of patient’s spiritual beliefs and experiences.11 In a study of 600 user postings on a pancreatic cancer informational Web site, 19% (N=114) of all postings addressed a spiritual concern. In one post, a patient in the study explained that she obtained factual medical information from her medical team and hope and support from her fellow chat room users.11 Providing spiritual care means understanding that spirituality is not about the beliefs of the clinician, is not religiously based, and is not just reserved for the chaplain; rather, spiritual care should be focused on the health of the whole patient and can be provided by anyone.
Spiritual care practices in oncology Quantitative studies of spirituality in patients with cancer have helped to explain how variables such as spiritual well-being interact with other patient-related variables.6 Manning-Walsh concluded in a 2005 study of 74 participants with recurrent cancers of various types that symptom distress (eg, nausea, changes in mood, decreased appetite, pain, and fatigue) was inversely related to spiritual well-being, which was expressed by patients as a sense of meaning and purpose for the experience despite facing a life-threatening illness.5
Studies have also found that health care providers infrequently identify and address their patients’ spiritual needs.3,7,13 Part of the reason may be that health care providers believe that dealing with patients’ spiritual care needs is very demanding and is better avoided because of the emotional implications.3,12 Nurses expressed confidence in their ability to provide the physical aspects of care, but they lacked the confidence to provide spiritual care.3 A uniform approach to the assessment, methodology, and design of spiritual care studies is needed to improve knowledge in this area as well as to further characterize the close relationship between spiritual care and quality of life in cancer patients.3
