A developmental Approach to Spiritual Experience at Life’s End



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We do not need to resort to supernatural or mystical explanations to argue that religion is likely to have a beneficial effect on human health. It is likely to have such an effect because there are so many different pathways for it, through the modification of known health risk factors, the provision of social support, and the availability of belief systems for coping with adverse circumstances in late life. This large number of mechanisms makes religion a potentially powerful force in health, but it also makes it a complicated subject for study.

I conclude with a tiny story that exemplifies the caring, continuity, and trust that are the gifts of faith for those at the end of life: The patriarch of the family was lying on his deathbed, with his children gathered around. His daughter asked, hesitatingly, "Dad, which do you want, to be buried or cremated?" The father, thinking, replied, "I don’t know. Surprise me."



Ellen Idler (Ph.D., Yale, 1985), professor and chair of sociology at Rutgers University, is the co-author of The Hidden Health Care System (1981) and the author of Cohesiveness and Coherence: Religion and the Health of the Elderly (1994). She studies the impact of health perceptions on mortality and disability in middle-aged and elderly populations and has broader interests in the psychosocial resources that determine health status, including a special interest in religion. She was a 1988 recipient of an NIA FIRST Award. She received the FAS Award for Distinguished Contributions to Undergraduate Education in 1998. Her 1999 sabbatical was spent at the Department of Social Medicine, University of Copenhagen working with Danish collaborators on studies of self-ratings of health among the very old. Her current project funded by the NIA, is a study of religiousness and spirituality as factors in recovery from open-heart surgery. Other projects include a study of religious involvement among elders in their last year of life and the development of measures of religiousness for health research.

Volume 1.9 may 2001

"Suffer the Little Children to Come Unto Me"
Medical professionals seek to understand the spiritual development of children

By Pat Fosarelli

Until recently, little has been written about the spiritual lives of children, because the "normal" spiritual life was felt to be that of an adult. However, through the writings of people like Robert Coles, adults are now much more aware that children do have their own spiritual lives and, when we are willing to listen, they will tell us about their spiritual ideas and experiences. This is especially true of children who are ill or grieving–sometimes their hurt makes them very willing to express themselves in ways they may not have been able to express themselves otherwise.


Over the last 20—25 years, James Fowler’s stages of faith development have been used as proxy measures of spiritual stages throughout the lifecycle. Building upon the work of Eric Erikson, Fowler devised stages of faith development that account for psychological development as well. This consideration of psychological or emotional development is of particular importance in childhood and adolescence.
Fowler maintains that infants learn about God through the actions and words of their parents. How parents and other caregivers treat them and speak about God lays the foundation for the child’s faith journey. Preschool age children use their experiences of known situations and people to guide their behavior in novel situations. This also is true of their relationship with God. When children have been exposed to an image of a loving God, they will attribute to God the loving qualities of their parents and other significant adults.
Children of early elementary school age are very interested in myths, larger than life stories about the human condition. Children at this age also are very literal, based on their need for both rules and order. In their relationships with God, these children seek to understand the "rules" by which God operates, just as they would do with a human friend. Seeing God as friend brings comfort and helps children to understand that, as with any relationship, there is give and take.
Preadolescents and early adolescents seek to bring together what they have been taught within the context of their parents’ and church’s beliefs, as well as the divergent beliefs of their friends. They are learning to think in an abstract manner and can put themselves in the place of another. By contrast, mid- to late adolescents and young adults reflect deeply on their personal beliefs about God and other spiritual and theological issues.
Children who are suffering in some way (grieving, ill, dying, abused, etc.) may regress to a previous stage of faith development, may remain "stuck" in a certain stage, or may progress more rapidly through stages. This latter aspect is particularly true of dying children whose insights reach far beyond what would be expected of them chronologically.
As a physician, I have administered a spirituality survey to more than 6,000 children, both healthy and suffering. True to Fowler’s paradigm, children of younger ages give very concrete answers such as "the sun," "a big smile in the sky," "an old man" and "Jesus" to questions like "When you hear the word ‘God’ what do you think of?"
Older children give more abstract answers to the same question, including "peace," "love" and "goodness." Children do not shy away from more difficult theological questions, believing that God desires communication with us and, indeed, has something he would like to say. To the question "Is there a special secret God is trying to tell human beings? If so, what is it?," both younger and older children have focused on the need for human beings to love each other and to be kind to each other . . . something they believe adults have forgotten. A small but significant subset of children have responded, "God doesn’t keep secrets . . . people just don’t listen too good."
Perhaps it is with ill and grieving children that the most poignant answers are revealed in the question, "If you could get God to answer just one question, what would you ask?" Children who have been abused ask why they were abused. Children who are grieving ask why their loved one died, or if he or she is in heaven. Children who are ill or dying ask why this must be so. Depending on age, the phrasing of the questions might vary, but the content (and intent) is the same.
Parents and medical professionals frequently think that it is better to spare children from discussions of spirituality. However, the replies discussed above illustrate the importance of engaging children in discussions about death, illness, and loss. Children do much better physically, emotionally, and spiritually when their ideas are sought and they are included in important discussions.
In addition, judging from the responses of children who had experienced some kind of loss, the issue cannot be resolved unless it is brought out into the open. Even though we may be uncomfortable with their questions and their emotions, we must not shy away from hearing them out and wondering with them.

Pat Fosarelli, M.D., D.Min., is a faculty member in the department of pediatrics, Johns Hopkins University School of Medicine and The Ecumenical Institute of Theology at St. Mary’s Seminary and University.

NIHR Releases Handbook on Religion and Health

NIHR is pleased to announce that a new book on spirituality and health, co-authored by NIHR President Dr. David B. Larson and Dr. Harold Koenig of Duke University, has just been released by Oxford University Press. Titled Handbook of Religion and Health, the book reviews research on the relationship between religion and a variety of mental and physical health outcomes, including depression and anxiety; heart disease, stroke, and cancer; and health related behaviors such as smoking and substance abuse. Both the positive and negative effects of religion on health throughout the life span, from childhood to old age, are discussed in a straight-forward manner.
"This is the definitive analysis of the research dealing with the interaction of religion and health. Most people, including healthcare professionals, will be astonished at the depth and breadth of this information. The authors are to be commended for their courage and scholarship. Their handbook is destined to occupy a landmark place in the literature of medicine," states Larry Dossey, M.D., executive editor, Alternative Therapies in Health and Medicine and author, Reinventing Medicine and Healing Words.

"The book is the most comprehensive and critically accurate assessment of the influence of religious involvement on health. It is a noteworthy scientific contribution that will rapidly become the standard of the field and is certain to become a classic," according to Herbert Benson, M.D., Mind/Body Medical Institute associate professor of medicine, Harvard Medical School and author of The Relaxation Response and Timeless Healing.

"This is the most comprehensive book of its kind ever assembled . . . Not only have Koenig, McCullough and Larson done their homework, they help us do ours. This is a powerful volume and a seminal contribution to the field," says Laurel Arthur Burton, Methodist Theological School, Ohio.

Volume 1.5 January 2001

 

Cancer Patients and Caregivers Benefit from Religious Faith



By Andrew J. Weaver and Harold G. Koenig

Cancer patients and their caregivers may draw strength from their faith when faced with the illness that has overwhelmed them physically and emotionally.

Cancer ranks among the most feared of all diseases. It is the product of cumulative lifestyle and environmental factors that place everyone at risk.

In the United States each year, about 1.2 million cancers are diagnosed. According to the National Institutes of Health, the overall annual cost of cancer treatment comes to $107 billion. Cancer is the second leading cause of death, resulting in more than 550,000 deaths or one in every four Americans who die each year (American Cancer Society, 2000). A diagnosis of cancer challenges every dimension of a person’s life—physical, emotional, and spiritual. A cancer diagnosis can shatter the sense of invulnerability and control of one’s life, provoking anxiety and fear. Compounding this are the unknowns about the outcome of treatment, which can further increase feelings of loss of control.

Researchers are finding a strong relationship between patients’ reliance on religious beliefs and practices and the effectiveness of their coping with cancer. Faith can give a suffering person a framework for finding meaning and perspective through a source greater than self and can provide a sense of control over feelings of helplessness. The practice of faith also provides the natural social support of community. In a study of 100 older adults diagnosed with cancer, a consistent positive relationship was discovered between religious practice, spiritual well-being, hope, and low anxiety and depression.

Hope is particularly important for those suffering with cancer. Researchers have found a strong link between religious beliefs and hope. In a study of cancer patients at the University of Michigan Medical Center, 93 percent said that their faith had increased their capacity to be hopeful. Hope enables people to actively cope with difficult and uncontrollable life situations. Patients with a strong sense of hope report a high quality of life, and hopefulness is linked to better adjustment by radiation therapy patients being treated for cancer. Robust hope can give a patient strength and courage to face the stress of illness and treatment, while hopelessness brings passivity and resignation.

Quality of life is becoming more important for cancer patients as treatment advances extend the length of survival. Researchers studying a random sample of 296 breast cancer survivors in Southern California found that spiritual care was more important to the patients’ quality of life than counseling sessions, support groups, peer support, and even spouse support. Spiritual well-being among these patients often involves feelings of hopefulness, sense of purpose, participation in prayer or meditation, and church attendance. A second study of 1,337 cancer patients in the United States and Puerto Rico found that spiritual well-being influenced their quality of life as much as did their emotional and physical well-being. Spiritual well-being was associated with the ability to enjoy life even when experiencing negative symptoms, and the relationship remained strong even after controlling for many other factors associated with quality of life.

Other studies have found that the most common coping strategy for cancer patients is praying alone or with others, as well as having others pray for them. Cancer patients also place a high value on interactions with clergy, noting that pastoral visits and prayers help them maintain hope and optimism.

The frequent use of religion and spirituality when coping with illness and caregiver stress is no surprise given how important a religious community is to the majority of Americans. There are nearly 500,000 places of worship with a presence in almost every U.S. community. According to a recent Gallup poll, approximately 70 percent of Americans claim membership in a church or synagogue, and about 40 percent attend one of these places of worship at least weekly. The Gallup Research Center reports that the 353,000 Christian and Jewish clergy serving congregations in the United States (4,000 rabbis, 49,000 Catholic priests, and 300,000 Protestant ministers according to the U.S. Department of Labor) are among the most trusted professionals in society. Surveys by the National Institute of Mental Health found that clergy are more likely than psychologists and psychiatrists combined to have a person with a mental health diagnosis see them for assistance. More than 10,000 of these clergy serve as chaplains in hospitals and other health-care institutions working closely with medical professionals.

Family caregivers of those with chronic illness often rely heavily upon their religious faith to cope with the burden of providing care. Researchers at Johns Hopkins University surveyed caregivers of persons with end-stage cancer and Alzheimer’s Disease. They discovered that successful coping was associated with only two variables: number of social contacts and support received from religious faith. When these persons were followed over two years to determine what characteristics predicted faster adjustment to the caregiver role, again only number of social contacts and support received from personal religious faith predicted better adaptation over time. Thus, having support from one’s faith appears to be one of the most important factors responsible for successful coping with the stress of caregiving. Religious teaching can foster an ethos of care and responsibility that is an important recourse for those facing the stress of long-term caregiving. Furthermore, those who have an active faith tend to have a better relationship with the care recipients than do non-religious caregivers, which can reduce their risk of depression.

Cancer patients tend to focus on religious issues more and more as the illness advances. When 231 patients with end-stage cancer were asked what maintained their quality of life, their "relationship with God" was the most common response among 28 choices that included "how well I eat," "physical contact with those I care about," and "pain relief." According to these findings, terminal cancer patients maintained their relationship with God in spite of severe functional difficulties and serious physical symptoms. In a study of 108 women in Michigan at various stages of cancer, about half felt they had become more religious since they were diagnosed.

African Americans are more likely to develop cancer and are 30 percent less likely to survive it than European Americans. During the period from 1990–1996, the incidence rates were 442.9 per 100,000 among African Americans, 402.9 per 100,000 for European Americans, and 275.4 among Hispanic Americans, according to a study last year by the American Cancer Society. Early detection programs have resulted in a 35 percent improvement in five-year survival for colon and breast cancer patients in the American population as a whole.

Faith-based communities can play a vital role in preventing cancer through screening. Research has found that the participation of clergy and key lay members in church-based cancer control programs can improve access to and participation in screening for cancer by African Americans and Hispanic Americans. A recent study published in the American Journal of Public Health found that church-based telephone-counseling in ethnic minority communities in Los Angeles significantly increased cancer mammography adherence. Such church-based programs may have great impact by promoting regular cancer screening. These should be supported and implemented by faith communities to help ensure a healthy congregation, both body and soul.

Andrew J. Weaver, Ph.D., is a United Methodist minister and a clinical psychologist. He is co-director of research for the HealthCare Chaplaincy in New York City. Harold G. Koenig, M.D., is associate professor of psychiatry and internal medicine, as well as director of the Center for the Study of Religion/Spirituality and Health at Duke University Medical Center. This article is reprinted with kind permission of the United Methodist Reporter, Dallas, Texas.

Volume 11/12 July/August 2001

Studies Show Religiousness/Spirituality Prevalent in Children and Adolescents with Chronic Illness



By Sara M. Pendleton

When I was an intern on the oncology service, I was summoned by the nurses to talk to a terminally ill adolescent boy who had recently received his second bone marrow transplant (BMT) as a heroic effort for survival. The nurses informed me he was agitated and demanding Benadryl intravenously (IV) instead of by mouth because they believed he wanted the "buzz" of the "IV."

They asked me to join them in trying to convince him to take it by mouth as IV administration was not standard protocol for patients who could take it orally. As I entered the room and went through the ritual washing for the BMT rooms, I pondered what I could say to convince him to take the Benadryl by mouth.

When I finished washing, he sized me up, then said with a wisdom which caught me off guard, "I do not care about the Benadryl. I just wanted someone to talk to about dying and heaven."

Nothing in my training had prepared me for this question. Nothing in my trusty Pediatric Handbook at my side would help me now. I was flustered and caught off guard. Then I remembered a response I had heard the psychiatrists use, and thinking of nothing better to say in what seemed like an eternal pause, I stammered, "Um, tell me how you feel about it." And he did.

Such clinical experiences as a pediatrician caring for chronically and terminally ill children and adolescents prompted me to launch an empirical research career studying the intersection of religiousness/spirituality and coping in children with chronic illness. A full review of existing research and future directions can be found in Pediatrics, October, 2000. The following are three "pearls" gleaned from our multiple research projects investigating this topic.

First, many children employ religion/spirituality in coping with chronic illness. Beliefs among children and adolescents are surprisingly prevalent with 95 percent of the general adolescent population professing belief in God (or universal spirit) and 80 percent agreeing that their faith is important. Research has found that over 60 percent of children with chronic illness (e.g., cancer, cystic fibrosis) use religious/spiritual practices such as prayer, pilgrimage, rituals, and religious objects to deal with their illness. A very substantial 92 percent found prayer to be beneficial.

Second, children with chronic illness hold a wide variety of beliefs that vary greatly over time with respect to age, developmental level, disease severity, and socio-cultural exposures. Beliefs of children are unique and do not always match professed denominational or parental views. While most children with chronic illness believe that God loves them, some believe that God is punishing them with illness or teaching them a lesson. While most grow closer to God, some turn away from God and question why a God who loves them can allow their illness to happen. Despite adversity, many children with chronic illness maintain an image of a loving God—even if they perceive that He cannot or will not help them.

Third, many children report feeling both empowered and cared for when members of the health care team discuss religious/spiritual beliefs with them. In contrast to children’s perceived lack of control over illness and treatment, especially when facing issues of disability and death sooner than their peers, religion/spirituality is an area where they perceived greater control either directly or indirectly through God’s control. They recognized their clergy, parents and other family members, friends, and members of their faith communities as important, caring, spiritual resources. Children also reported that by discussing their beliefs with their doctor, they felt cared about as a person, not just a patient or diagnosis. Culturally-sensitive discussions that support connections with existing religious/spiritual resources provide a potential avenue for empowering children by encouraging coping and self-expression of inner hopes, fears, and beliefs.

Soon after our discussion, the adolescent boy with cancer was discharged home. I never saw him again. Two years later, I saw his father at a local store. He told me how much his son had treasured and appreciated our discussion that late night in the hospital. "It was a turning point for my son, as if he put his fears aside and was then prepared to face his future," said his dad. He had died four months after our discussion, surrounded by family, friends, and his faith community.

"But I did not really do anything," I said. "He simply shared his beliefs, his fears, his doubts, and his hopes. I only listened. I didn’t have any answers. I only listened."

Sara M. Pendleton, M.D., is an assistant professor in the division of ambulatory pediatrics, at Children’s Hospital of Michigan, Detroit.

Reprinted with permission from Spirituality and Medicine Connection, Volume 5, Issue 2, Summer 2001, a publication of the International Center for the Integration of Health and Spirituality (formerly National Institute for Healthcare Research).



Volume 2.1 September, 2001
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