Illness and the prospect of dying can call into question the very meaning and purpose of a person’s life. Illness can also cause people to suffer deeply. Victor Frankl wrote that man is not destroyed by suffering; he is destroyed by suffering without meaning (2). Writing about concentration camp victims, he noted that survival itself might depend on seeking and finding meaning. Harold Kushner also noted that pain may be the reason, and out of pain and suffering may come the answer (3). In my own clinical experience, I have found that people may cope with their suffering by finding meaning in it. Illness can present people with the opportunity to find new meaning in their lives. Many patients say that out of their despair they were able to realize an entirely new and more fulfilling meaning in their lives. Rabbi Cohen wrote:

Spirituality helps people find hope in the midst of despair. As caregivers, we need to engage our patients on that spiritual level. This is where spirituality plays such a critical role—the relationship with a transcendent being or concept can give meaning and purpose to people’s lives, to their joys and to their sufferings. Spirituality is concerned with a transcendental or existential way to live one’s life at a deeper level, “with the person as human being” (5). All people seek meaning and purpose in life; this search may be intensified when someone is facing death.

There are many different ways people can derive meaning from their lives:

Some of these activities or practices provide an important but perhaps transient meaning (meaning with a small m); others provide a more transcendent and spiritual meaning (meaning with a large M). For example, work may provide an immense amount of meaning to a person. But when that person is ill or dying and unable to work, what then will provide meaning? Therefore there are activities, relationships, and values that are meaningful but do not define the ultimate purpose of one’s life. Illness, aging, and dying strip away all those things that were meaningful but that do not ultimately sustain us. When we confront ourselves in the nakedness of our dying, it is then that we have the opportunity to find deep and transcendent meaning—that is, values, beliefs, practices, relationships—expressions that lead one to the awareness of transcendence/God/Divine and to a sense of ultimate value and purpose in life. Everyone’s sense of meaning evolves over their life in response to experiences and life in general. People can fluctuate between “meaning” and “Meaning.”

Downey defined spirituality as “an awareness that there are levels of reality not immediately apparent and that there is a quest for personal integration in the face of forces of fragmentation and depersonalization” (6). Spirituality is that
aspect of human beings that seeks to heal or be whole. Foglio and Brody wrote:

Healing, then, is not synonymous with recovery. Indeed, healing may occur at any time, independent of recovery from illness. In dying, for example, restoration of wholeness may be manifested by a transcendent set of meaningful experiences while very ill. It may be reflected by a peaceful death. In chronic illness, healing may be experienced as the acceptance of limitations (5). A person may look to medical care to alleviate his or her suffering, and when the medical system fails to do so, begin to look toward spirituality for meaning, purpose, and understanding. As people are faced with serious illness or the prospect of dying, questions often arise:

These questions can cause people to undergo a life review whereby they analyze their lives, accomplishments, relationships, and perceived failings (8). This questioning can result in fears, anxieties, and unresolved feelings, which in turn can result in despair and suffering as people face themselves and their eventual mortality. Cassell wrote, “Since in suffering, disruption of the whole person is the dominant theme, we know of the losses and their meaning by what we know of others out of compassion for their suffering” (9). Compassion is essential in the care of all patients, particularly those who are dealing with chronic and serious illnesses and are dying. Two Latin words form the root of the word compassion: “cum,” meaning “with,” and “passio,” meaning “suffering with” (10). What compassionate care asks us to do is to suffer with our patients, that is, to be present to them fully as they suffer and to partner with them in the midst of their pain.

Medicine has enjoyed tremendous technologic advances that have helped treat illness and prolong lives. These advances have shaped medical care in the Western world. Although this is very positive, it has tended to focus care on the technologic and curative aspects, diminishing the importance of the humanitarian and compassionate aspects of care. As Doka wrote, “Efforts to humanize patient care are essential if the integrity of the human being is not to be obscured by the system” (5).

Dying is a natural occurrence in life. However, the western medical and social culture still treats dying as if it were just a biological occurrence. Dying should be as natural an experience as birth. It should be a meaningful experience for dying persons, a time in which they find meaning in their suffering and have all the dimensions of their experience addressed by their caregiver. These dimensions are the physical, psychological, social, and spiritual (Table 58.1).

Patients encounter all types of suffering—spiritual as well as physical. Cecily Saunders, the founder of St. Christopher’s Hospice in London and of the Hospice movement, stated that one of the aims of hospice is that there be relief of “total pain,” including the physical, emotional, psychological, social, and spiritual (11). It should be the obligation of all physicians and other caregivers to respond to, as well as attempt to relieve, all suffering if possible. Because people may cope with suffering using their spiritual resources, physicians should be able to communicate with their patients about spiritual issues. They should recognize the spiritual as well as physical dimensions of suffering and make resources available for those patients who wish them. Physicians have the responsibility to listen to people as they struggle with their dying. We need to be willing to listen to their anxieties, their fears, their unresolved conflicts, their hopes, and their despairs. If people are stuck in despair, they will suffer deeply. It is through their spirituality that people become unstuck from despair.

Medical professionals are recognizing that there are inadequacies in the health care system in terms of care of the dying. The American College of Physicians convened an end-of-life consensus panel, which concluded that physicians should extend their care for those with serious medical illness by attentiveness to psychosocial, existential, or spiritual suffering (12). Other national organizations have also supported the inclusion of spirituality in the clinical setting. The Joint Commission on Accreditation of Healthcare Organizations has a policy that states: pastoral counseling and other spiritual services are often an integral part of the patient’s daily life. When requested, the hospital provides, or provides for, pastoral counseling services (13).

The interest in spirituality in medicine among medical educators has been growing exponentially. Medical schools are now teaching courses in end-of-life care and in spirituality and medicine. Only one school had a formal course in spirituality and medicine in 1992. Now, over 100 medical schools are teaching such courses (14). The key elements of these courses have to do with listening to what is important to patients, respecting their spiritual beliefs, and being able to communicate effectively with them about these spiritual beliefs, as well about their preferences at the end of life.

In 1998, the Association of American Medical Colleges (AAMC), responding to concerns by the medical professional community that young doctors lacked these humanitarian skills, undertook a major initiative—The Medical School Objectives Project (MSOP)—to assist medical schools in their efforts to respond to these concerns. The report notes that “Physicians must be compassionate and empathetic in caring for patients … they must act with integrity, honesty, respect for patients’ privacy and respect for the dignity of patients as persons. In all of their interactions with patients they must seek to understand the meaning of the patients’ stories in the context of the patients’, and family and cultural values” (15). In recognition of the importance of teaching students how to respect patients’ beliefs, AAMC has supported the development of courses in spirituality and medicine.

In 1999, a consensus conference with AAMC was convened to determine learning objectives and methods of teaching courses on spirituality, cultural issues, and end-of-life care. The findings of the conference were published as Report III of the MSOP. This report included a clinically relevant definition of spirituality: spirituality is recognized as a factor that contributes to health in many persons. The concept of spirituality is found in all cultures and societies. It is expressed in an individual’s search for ultimate meaning through participation in religion and/or belief in God, family, naturalism, rationalism, humanism, and the arts. All of these factors can influence how patients and health care professionals perceive health and illness and how they interact with one another (16).

Spirituality, that which gives us meaning, can be expressed in many ways. When approaching patients’ spiritual issues, it is important to recognize that the definition of spirituality is broad and all-encompassing. It is critical to allow the patient to inform the physician and other care providers what spirituality means to that patient. The outcome goals stated in MSOP III are that students will:

The need for attentiveness to the spiritual concerns of dying patients has been well recognized by many researchers (19, 20). A survey conducted in 1997 by the George H. Gallup International Institute showed that people overwhelmingly want their spiritual needs addressed when they are close to death. In the preface to the survey report, George H. Gallup, Jr., wrote: “The overarching message that emerges from this study is that the American people want to reclaim and reassert the spiritual dimensions in dying” (21). In the study, survey respondents said they wanted warm relationships with their providers, to be listened to, to have someone to share their fears and concerns with, to have someone with them when they are dying, to be able to pray and have others pray for them, and to have a chance to say goodbye to loved ones. When asked what would worry them, they said not being forgiven by God or others, or having continued emotional and spiritual suffering. When asked about what would bring them comfort, they said they wanted to believe that death is a normal part of the life cycle and that they would live on, either through their relationships, their accomplishments, or their good works. They also wanted to believe that they had done their best in their life and that they will be in the presence of a loving God or higher power. It is as important for health care providers and other caretakers to talk with patients about these issues as it is to address the medical-technical side of care. In a recent study, most of the people surveyed said that their second highest concern, if they were facing death, was being at peace in general and at peace with God specifically (12).

The 1990 Gallup survey found that 75% of Americans say religion is central to their lives; a majority feels that their spiritual faith can help them recover from illness (18). Additionally, it was found that 63% of patients surveyed believe it is good for doctors to talk to patients about spiritual beliefs. Lehman et al. found that 94% of patients with religious beliefs agreed that physicians should ask them about their spiritual beliefs if they become gravely ill; 45% of patients who denied having any religious beliefs still agreed that physicians should ask their patients about their spiritual beliefs (22). In this survey, 68% of patients said they would welcome a spiritual question in a medical history; only 15% said they actually recalled being asked by their physicians whether spiritual or religious beliefs would influence their decisions. A study surveying more than 200 hospital inpatients found that 77% believed physicians should consider patients’ spiritual needs. Furthermore, 37% wanted their physician to discuss spiritual beliefs with them more frequently and 48% wanted their physicians to pray with them (23).

In a more recent study, McCord et al. asked patients in a family practice setting when those patients would welcome spiritual discussions with their clinicians (24). The following responded positively: 94% responded yes if they were seriously ill, with the possibility of dying; 91% said yes if they were suffering from an ongoing serious illness; 87% said yes if suffering from a loss; 83% said yes if admitted to a hospital; and 60% responded positively during a history or initial visit. This has important implications for palliative care as palliative care clinicians work with patients in all these categories (24).

The beneficial effects of spirituality in helping people cope with serious illness and dying are well documented (25). Furthermore, researchers have noted that most patients with cancer in a palliative care setting experience spiritual pain, which is expressed as an internal conflict, a loss or interpersonal conflict, or in relation to God/Divine. Fitchett and others have shown that spiritual struggles are associated with poor physical outcome and higher rates of morbidity (26). Spiritual pain is also related to psychological distress so that patients presenting with depression or anxiety may actually be suffering from spiritual conflict (27).

Quality of life instruments used in end-of-life care try to measure an existential domain, which addresses purpose, meaning in life, and capacity for self-transcendence. In studies of one such instrument, three items have been found to correlate with good quality of life for patients with advanced disease: if the patient’s personal existence is meaningful; if the patient finds fulfillment in achieving life goals; and if life to this point has been meaningful (38). This supports the importance of addressing meaning and purpose in a dying person’s life. Spirituality and nonorganized religion have also been associated positively with the will to live in patients with HIV (28).

The observations noted in patient stories (5) and in the writings of Foglio and Brody (7)—that illness can cause people to question their lives, their identities, and what gives their life meaning—is supported by research. For example, in a study of 108 women undergoing treatment for gynecologic cancer, 49% noted becoming more spiritual after their diagnosis (35). In a study of parents with a child who had died of cancer, 40% of those parents reported a strengthening of their own spiritual
commitment over the course of the year before their child’s death (34). Illness, facing one’s mortality, is an opportunity for new experience, self-awareness, and meaning in life.

Religion and religious beliefs can play an important role in how patients understand their illness. In a study asking older adults about God’s role in health and illness, many respondents saw health and illness as being partly attributable to God and, to some extent, God’s interventions (40). Pargament et al. have studied both positive and negative coping, and have found that religious experiences and practices, such as seeking God’s help or having a vision of God, extends the individual’s coping resources and are associated with improvement in health care outcomes (51). Patients showed less psychological distress if they sought control through a partnership with God or a higher power in a problem-solving way, if they asked God’s forgiveness or were able to forgive others, if they reported finding strength and comfort from their spiritual beliefs, and if they found support in a spiritual community. Patients had more depression, poorer quality of life, and callousness toward others if they saw the crisis as a punishment from God, if they had excessive guilt, or if they had an absolute belief in prayer and cure and an inability to resolve their anger if cure did not occur. Pargament et al. have also noted that sometimes patients refuse medical treatment based on religious beliefs (52).

There are a number of studies on meditation, as well as other spiritual and religious practices that demonstrate a positive physical response, especially in relation to levels of stress hormones and modulation of the stress response (41). Although more solid evidence is needed, there appears to be an association between meditation and some spiritual or religious practices and certain physiologic processes, including cardiovascular, neuroendocrine, and immune function.

How does spirituality work to help people cope with their dying (Table 58.2)? One mechanism might be through hope. Hope is a powerful inner strength that helps one transcend the present situation and helps foster a positive belief or outlook. Spirituality and religion offer people hope, and help people find hope in the midst of the despair that often occurs in the course of serious illness and dying. Hope can change during a course of an illness. Early on, the person may hope for a cure; later, when a cure becomes unlikely, the person may hope for time to finish important projects or goals, travel, make peace with loved ones or with God, and have a peaceful death. This can result in a healing, which can be manifested as a restoration of one’s relationships or sense of self. Often our society thinks in terms of cures. Whereas cures may not always be possible, healing—the restoration of wholeness—may be possible to the very end of life. Hope has also been shown to be an effective coping mechanism. Patients who are more hopeful tend to less depressed.

Religious beliefs offer a sense of hope. For example, in Catholicism, hope in Jesus’ promise of victory over death through resurrection and salvation gives Catholics hope in a life beyond death. In the funeral rites, it is stated: “I believe in the resurrection of the dead and the life of the world to come” (53). In the Protestant view, the concept of salvation in death gives hope. Jesus’ dying and rising from the dead means that those who participate in His death no longer participate in the sinful human nature (54). In Eastern traditions such as Buddhism and Hinduism, the hope of rebirth and a belief in karma offer people hope in the face of mortality (55). In Judaism, there are many diverse ways of viewing death. For some, hope is found in living on through one’s children. In the orthodox and conservative views, there is a belief in a resurrection in which the body arises to be united with the soul (56). For patients with and without specific religious beliefs, there is a need to transcend death, which also may be manifested through living on through one’s relationships or one’s accomplishments and deeds (57). Irion suggests that humans may create abstractions by portraying a life after death (58). For the religious, this may take the form of concepts found in their religious traditions. For others, life after death might be in terms of one’s descendants. For some, it might be being immortalized in the memory of others or in the contributions one makes in life. Cultural beliefs and traditions can also contribute to how people find meaning and hope in the midst of despair (59).