Spirituality, religion, and healing in palliative care

Clin Geriatr Med 20 (2004) 689 – 714

Spirituality, religion, and healing in palliative care Christina M. Puchalski, MD, OCDSa,b,*, Rabbi Elliot Dorff, PhDc, Imam Yahya Hendi, MAd a

George Washington Institute for Spirituality and Health, 2131 K Street, NW, Suite 510, Washington, DC 20037, USA b Department of Medicine and Health Care Sciences, George Washington University, 2300 Eye Street, NW, Washington, DC 20037, USA c Department of Philosophy, University of Judaism, 15600 Mulholland Drive, Los Angeles, CA 90077, USA d Georgetown University, 37th and O Streets, NW, Washington, DC 20057, USA

As we approach the bedside of a dying patient, whether as clinician or loved one, we participate in a part of life that can be awesome and terrifying. In that interaction, the patient and the caregiver bring so much of themselves to the encounter—their fears, experiences, questions, hopes, and dreams. Out of this partnership, care is borne. In any discussion about the delivery of health care to the dying, it is crucial that the experience of dying for the patient and the caregiver be acknowledged. Traditionally, society at large and the Western medical system have viewed death as something to be avoided, and the emphasis has been placed on a cure. When someone is dying, the health care system is illequipped to deal with that person because there is no cure or fix. This may be due, in part, to the fact that caring for the dying challenges caregivers to examine issues about their own mortality. The questions that arise can be painful and frightening: ! Why me? ! Why my loved one or my patient?

* Corresponding author. George Washington Institute for Spirituality and Health, 2131 K Street, NW, Suite 510, Washington, DC 20037. E-mail address: [email protected] (C.M. Puchalski). 0749-0690/04/$ – see front matter D 2004 Elsevier Inc. All rights reserved. doi:10.1016/j.cger.2004.07.004

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! Why do good people suffer? ! How will I survive this loss? ! Why can’t I make this better for my patient? These are often unanswerable questions. Medical professionals who are trained to have answers may find it easier to avoid the internal quandary that arises and focus instead on things that seem easier and less personal, such as pain and symptom control. The partnership model of care requires, however, that clinicians view the patient as a whole person and requires clinicians to reflect on their own issues about death and dying. Uncertainty is inherent in the dying process. There is uncertainty about prognosis, finances, and the ability of the caregiver to continue to care for the patient [1]. There is also the existential uncertainty about the meaning and purpose of the experience for the patient and the caregiver. The inherent mystery of life triggers spiritual questions and experiences. Chronic illness, dying, and death can challenge the things we thought gave meaning to our lives. These challenges can be ignored or suppressed, or they can be faced. When facing them, we embark on a spiritual journey which results in questions, new intimacies, and new discoveries as well as painful moments of darkness and isolation. Spirituality is fundamental to the dying process and to the care of dying persons.

Spirituality and religion Spirituality can be defined broadly as that which gives people meaning and purpose in life. The definition that is used as a basis for medical school courses on spirituality and health is as follows: Spirituality is recognized as a factor that contributes to health in many persons. This concept is found in all cultures and societies. It is expressed in an individual’s search for ultimate meaning through participation in a religion, but it can be much broader than that, such as, belief in God, family, naturalism, rationalism, humanism, and the arts [2].

How people find meaning and purpose can vary. Patients also speak in religious terms of the divine or of the awe they experience in a sunset, life-cycle events, moral quests, and multigenerational connections. It is important to understand how people find meaning and how they touch that spiritual side of themselves. People also express their spirituality in rituals. These rituals may have an important role in how people cope with the end of life [3,4]. Religion is one expression of spirituality. Many people find meaning in religious beliefs that can help them understand suffering, meaning, and purpose and help them grapple with the uncertainty of life. The relevance of religion to health care generally and to palliative care in particular is embedded in the word religion. The ‘‘lig’’ in that word is derived from the same Latin root that gives us the English word ligament, a connective tissue. The Latin root means to

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‘‘connect, tie, or bond.’’ Part of what religions do is give us a picture of how we are tied to our family, our community, the larger human community, the environment, and the transcendent element in our experience (expressed in the three monotheistic religions as God). Religions provide a lens through which we see the world, a group of concepts and values that tell us who we are and who we should strive to be. Religions are important in understanding the moral elements of life. Concrete moral norms are rooted in the broad pictures of the world provided by religions and philosophies: whether one should fight against all odds to remain alive, regardless of quality of life, or whether one should acquiesce to dying and seek comfort care; whether one should refuse comfort care because suffering is salvational depends critically on how we understand the nature and proper goals of human life. It is crucial that individuals involved in health care discussions in general and end-of-life decisions in particular recognize the religious/spiritual side of life for several reasons: (1) People are likely to base their decisions about specific moral issues relevant to their care on their religious views of who they are as human beings and who they should strive to be; (2) religions provide an important antidote to the exaggerated individualism of American life by providing a web of relationships with other human beings and with God; and (3) religions provide concepts, values, and rituals that function as powerful coping mechanisms in the face of death. The patient is a whole person and not a machine that needs to be fixed or dismantled, and the religious or philosophical way in which the patient understands his or her place in life is vital. This article discusses issues from three major religious traditions—Christianity, Islam, and Judaism. It is acknowledged, however, that there are many more perspectives from other religious and spiritual traditions that are not included in this article.

Data on the role of spirituality and health There have been numerous studies on spirituality/religion and health [5–8]. That spirituality is central to the dying person is well recognized by many experts and, most importantly, by patients. Several national surveys have documented patients’ desires to have their spiritual concerns addressed by their physicians. A 1990 Gallup Poll [9] showed that religion, one expression of spirituality, plays a central role in the lives of many Americans. A more recent Gallup survey [10] showed that 94% of Americans surveyed said they believe in God or a higher power; 6 out of 10 said religion is very important in their life, and 3 out of 10 said it is fairly important. About two thirds of Americans claim to be a member of a church or synagogue. Additionally, when asked to state their religious preference, only 9% of the public said ‘‘none’’ [10]. The need for attentiveness to the spiritual concerns of dying patients has been well recognized by many researchers [11,12]. A survey conducted in 1997 by the George H. Gallup International Institute [13] showed that people overwhelmingly

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want their spiritual needs addressed when they are close to death. In the preface to the survey report, Gallup wrote: ‘‘The overarching message that emerges from this study is that the American people want to reclaim and reassert the spiritual dimensions in dying’’ [13]. In the study, survey respondents said that in addition to having warm relationships with their providers, they wanted 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, respondents said not being forgiven by God or others or having continued emotional and spiritual suffering. When asked about what would bring them comfort, respondents said they wanted to believe that death is a normal part of the life cycle and that they would live on, through their relationships, their accomplishments, or their good works. They also wanted to believe that they had done their best in life and that they would be in the presence of a loving God or higher power. It is as important for health care providers and other caregivers to talk with patients about these issues as it is to address the medical-technical side of care. The 1990 Gallup survey [9] found that 75% of Americans said religion is central to their lives; most believed that their spiritual faith could help them recover from their illness. Additionally, 63% of patients surveyed believed it is good for physicians to talk to patients about spiritual beliefs [14]. Ehman et al [15] found that 94% of patients with religious beliefs agreed that physicians should ask about their spiritual beliefs if they became gravely ill; 45% of patients who denied having any religious beliefs still agreed that physicians should ask patients about their spiritual beliefs. In this survey, 68% of patients said they would welcome a spiritual question in a medical history, but only 15% said they actually recalled being asked by their physicians whether spiritual or religious beliefs would influence their decisions. A study that surveyed more than 200 hospital inpatients found that 77% said physicians should consider patients’ spiritual needs; 37% wanted their physician to discuss spiritual beliefs with them more frequently, and 48% wanted their physicians to pray with them [16]. A Time/CNN poll found that 65% of people surveyed wanted their physicians to address their spiritual issues [17]. There is a growing body of evidence that documents the relationship between patients’ religious and spiritual lives and their experiences of illness and disease [18]. In addition to surveys that show spirituality is important to people and that a significant percentage of patients would like their physicians to discuss their spiritual beliefs with them, many studies show that having spiritual beliefs is beneficial to patients, particularly patients with serious illnesses. Spirituality has been found to be an important factor in bereavement. It has been reported that parents who lose a child find much support in their spiritual beliefs after the child’s death [19]. Spirituality is important in coping with pain and with dying. Among patients with gynecologic cancers, 93% noted that their spiritual beliefs helped them cope with their cancer [20]. Patients with advanced cancer who found comfort from their spiritual beliefs were more satisfied with

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their lives, were happier, and had diminished pain [21]. In a questionnaire sent out by the American Pain Society, prayer was the second most common method of pain management after oral pain medications, and it was the most common nondrug method of pain management [22]. In a study of patients with human immunodeficiency virus (HIV), patients who were spiritually active had less fear of death and less guilt about their illness. Fear of death was more likely among 26% of religious patients who believed their illness was a punishment from God. Fear of death diminished among patients who had regular spiritual practices or who stated that God was central to their lives. Patients who believed in God’s forgiveness were more likely to engage in discussions about advance directives [23]. In a study of the effects of spirituality on the will to live in HIV patients, spirituality, nonorganized religion, and optimism were some of the variables associated with patients who believed their lives were better after being diagnosed with HIV. Spiritual or religious beliefs may affect how patients understand their illness and how they may find ways to cope with and make meaning of their illness [24]. Quality-of-life instruments used in end-of-life care try to measure an existential domain that addresses purpose, meaning in life, and capacity for selftranscendence. In studies of one such instrument, three items correlated with good quality of life for patients with advanced disease: (1) if the patient’s personal existence was meaningful, (2) if the patient found fulfillment in achieving life goals, and (3) if life to this point had been meaningful [25]. These findings support the importance of addressing meaning and purpose in a dying person’s life. The observations noted in patient stories [7,26] and in the writings of Foglio and Brody [27] indicate that illness can cause people to question their lives, their identities, and what gives their life meaning, and these observations are supported by research. In a study of 108 women undergoing treatment for gynecologic cancer, 49% noted becoming more spiritual after their diagnosis [20]. In the study of parents whose child died of cancer, 40% reported a strengthening of their own spiritual commitment over the course of the year before the child’s death [19]. Facing illness and one’s mortality can be an opportunity for new experience and self-awareness and can enhance meaning in life. Religion and religious beliefs can play an important role in how patients understand their illness. In a study that asked 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 [28]. In this study, prayer seemed to complement medical care rather than compete with it. Meditation has been found to be a useful adjunct to conventional medical therapy for chronic conditions, such as headaches, anxiety, depression, premenstrual syndrome, acquired immunodeficiency syndrome, and cancer [29]. Pargament et al [30] studied positive and negative coping and found that religious experiences and practices, such as seeking God’s help or having a vision of God, extend the individual’s coping resources and are associated with improvement in health care outcomes. Patients showed less psychological distress if

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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 a cure and an inability to resolve their anger if a cure did not occur. Pargament et al [31] also noted that patients sometimes refuse medical treatment based on religious beliefs.

The whole person Beginning with Plato, Western philosophy describes the human being as consisting of two separate parts: The body is the animal in us, and the mind is what makes us distinctly human. Assuming that dichotomy, a stock issue in Western thought has been the ‘‘mind-body’’ problem—in other words, if the body and mind are separate, how are they connected? Early Christian sources assumed a similar dichotomy between body and soul. This influenced scientific thought as well, and during the Renaissance tensions emerged between science and religion. As medicine became more scientific, religion was seen as a barrier to progress [32]. The realm of the body was delegated to physicians, whereas the care of the soul remained with religious leaders. In sharp contrast to this dichotomous thinking, the Jewish tradition asserts that humans are integrated wholes, that body, mind, emotions, and will all are connected and that these faculties all affect one another (B. Sanhedrin 91a–91b and M. Ethics of the Fathers 2:1). The Talmud (B. Nedarim 39b–40a) records that those who visit the sick take away the burden from that person, and whoever fails to visit adds to that burden. The traditional Jewish prayer for the sick asks God to grant ‘‘healing of body and healing of soul’’ because it recognizes that the two are intertwined. Similarly the Qur’an, believed by Muslims to be the word of God, states: ‘‘I reveal the Qur’an that which is a healing and a mercy for the believers’’ (Qur’an, 17:82). This verse reflects the Qur’anic understanding of illness and healing. The teachings of the Qur’an attempt to deal with the human being as a whole—body, heart, and soul. The Qur’an suggests that the healing process must deal with all aspects of the human being that secular medicine fails to deal with. Whether from the Christian, Jewish, or Muslim perspective, this integrated view of human beings has immediate implications for how patients must be treated. It is not enough to attend to either the physical side or the spiritual side of illness. People need help with both. The same person may not fulfill those two needs, but people need both fulfilled, and each has a significant effect on the other. Spiritual care alone is not enough. The Talmud requires that Jews live in cities where a physician is available and that they obey the physician’s orders in their effort to preserve the health and life of their bodies, which ultimately are

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owned by God. Conversely, physical care is not enough. People will not be motivated to follow a medical regimen—especially a difficult one—unless they have a will to live, and people need other people and God to restore their will to live when they are suffering the debilitating effects of illness. Similarly, in Christianity, the body is spoken of as the ‘‘temple of the Holy Spirit within you’’ (1 Cor 6:19-20). St. Paul goes on to say, ‘‘Therefore glorify God in your body.’’ There also are some Pauline passages that are less positive and suggest that the body presents an obstacle to full union with God (2 Cor 5:6-8). Although there is this ambivalence about the body, Wiseman [33] challenged Christians to view the body in a positive sense as a temple of God. Julian of Norwich, a fourteenth century Catholic mystic, wrote, ‘‘For as body in the flesh, and the heart in the trunk, so are we, soul and body, clad and enclosed in the goodness of God’’ [33]. In the Second Vatican Council, the first chapter of the Pastoral Constitution of the Church in the Modern World noted, ‘‘The human person, though made of body and soul is a unity . . . One is obliged to regard one’s body as good and to hold it in honor since God created it and will raise it on the last day’’ [33]. A person’s dignity is rooted in his creation in God’s image, and all of the person, body and soul, should be honored. Islam teaches that God created the whole person as one unit and in a perfect form. The perfection of the human being reflects the perfection of the Creator. Caring for the whole human being is caring for the Perfect Founder. The whole is a trust with which God trusted us. Caring for the trust is a form of gratitude to God.

Community There is an increasing emphasis in health care today on viewing the patient as part of a larger picture, part of a larger circle of family, friends, religious or spiritual groups, pets, and others. Not only are people integrated in their personal faculties, they also are integrated into families and communities. It is mistake to think of people as isolated individuals. From the moment we are born, we are part of other people’s lives. We have a strong need to interact with others, and that is why, short of execution, the harshest punishment in prison is solitary confinement. Illness is isolating, however, and sick people do not see all the people with whom they regularly interact in the variety of settings they usually are part of. That is why the Jewish commandment of bikkur holim, visiting the sick, is so crucial. The Jewish tradition has rules about how one is to visit: We sit down so as not to reinforce the disparity in power between the visitor and the patient; we enable the ill to talk about their illness; we determine whether we can be of any help in taking care of the patient’s normal responsibilities; we speak with the patient about the same issues that we would otherwise discuss, communicating that we still care about the person’s opinion and still see the person as an adult; and we pray with and for the patient [34].

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Similarly, Christianity is rooted in service to others. Christ said, ‘‘Love one another as I have loved you.’’ Christians are encouraged to model their behavior after Christ. His fundamental commandment is to love others and care for others. Visiting the sick is one expression of love and charity for others. It is one of the corporal works of mercy. We must think of the ill as people who, despite their illness and similar to everyone else, have the deep need to interact in meaningful ways with other people. In the Muslim tradition, people who are suffering, the sick and the dying, are especially close to God, and Islam encourages Muslims neither to ignore nor to abandon the need of these individuals. The Prophet Muhammad said, ‘‘Visit the sick and the dying ones and ask them to pray for you as their prayers are accepted and their cries are heard by God’’ (Bukhari VI: 223). It is an Islamic moral etiquette to visit the sick and the dying as a way of providing them with moral and physical support, but also to be with them in the presence of the divine. Muhammad said, ‘‘A caller from heavens calls out to the person who visits a sick and dying person, dYou are good and your path is good. May you enter your residence in paradise in peace.T’’ It also is recommended that one pray for recovery and good health and that one should urge the ill person to endure the pain patiently. Although for some individuals the community may be a religious one, for many people the community may be like-minded friends and family or some other nontraditional community.

Suffering Suffering is intrinsic to the human condition [3]. People experience suffering on all levels—physical, emotional, social, and spiritual. Cassell [35] defined suffering as a state of severe distress associated with events that threaten the intactness of personhood. At the root of suffering is a sense that ‘‘what ought to be whole is being split apart’’ [36]. People with serious illness or people who are dying suffer not only physical pain, but also a separation from self, from others, and from God or the transcendent. People experience spiritual distress that can lead to suffering. Isolation, despair, hopelessness, meaninglessness, lack of closure or reconciliation, loss of faith and independence, and loss of dignity and purpose all can lead to intense suffering. It is not until there is integration of self that a person can be healed. Frankl [37] noted that people are not destroyed by suffering, but rather by suffering without meaning. Spirituality is that part of the individual that seeks to be whole, to be healed. Through one’s spirituality, healing can occur. That physicians should be attentive to all dimensions of a patient’s suffering, including the physical, emotional, social, existential, and spiritual, has been recognized by the American College of Physicians Consensus Panel on End-ofLife Care [38]. The consensus panel concluded that it is an ethical obligation for physicians to address all dimensions of a patient’s suffering. Because spirituality

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is integral to the alleviation of suffering, it is crucial that physicians and other clinicians know how to address spiritual issues with patients and, even more, know how to present to patients in a compassionate, caring way. Religions offer historical and philosophical perspectives on suffering. The age-old question of why people suffer is seen in the Old Testament in the Book of Job. The Christian interpretation of the story of Job has to do with Job’s acceptance that there are no satisfactory answers that humans have for why people suffer. The Christian may endure suffering without loss of faith because the Christian does not claim to be all-knowing regarding the ultimate reason for suffering. When Job stops asking the ‘‘Why me’’ questions of suffering, he moves to a new level of faith. In Christian understanding, enduring suffering without complaint against God and without self-righteousness is proof of faith. Jesus Christ provides a different model of suffering. Jesus was the sacrificial lamb who, in his death, took the sins of all of humanity on himself. His death is what redeems humankind. This does not mean suffering is to be endured as if it were a test of one’s faith, but rather one accepts suffering because by Jesus Christ’s suffering the effects of sin and evil are removed. By sharing in Christ’s suffering, the Christian deepens his or her union with God on a mystical level. St. Paul said, ‘‘We are always carrying about in the body the dying of Jesus, so that the life of Jesus may also be manifested in our body’’ (2 Cor 4:10). This does not negate the fact that people have pain, but it helps people cope with the pain by giving them the grace needed to bear suffering and not be overwhelmed by it. Inherent in the Christian concept of suffering is also the resurrection of Christ. Out of suffering comes glory and redemption, so suffering is a participation in the redemptive power of Christ’s passion, death, and resurrection. Death, transformed by the resurrection, is the opportunity for final union with God. These religious views sometimes can be involved in patients’ decision making around symptom and pain relief. Should patients suffer to be redeemed? The Catholic Church makes it clear that human beings are not being asked to be masochistic. ‘‘Patients should be kept as free of pain as possible, so that they may die comfortably and with dignity and in the place they wish to die’’ [39]. Metaphorically, some Christians see Christ’s suffering as a way to understand suffering in their lives so that coping with the suffering and coming through that suffering result in spiritual growth or closeness with God. In the same way that Christ’s body and soul were united in His resurrection, so can one’s body and soul be healed as one in the process of coping with and transcending one’s suffering. A Christian may cope with suffering by finding meaning in relation to Christ’s suffering (Col 1:22–19). Suffering in that context can be seen as redemptive. One Catholic patient spoke of coming to terms with his illness during the Lenten and Easter seasons after he was diagnosed with cancer. He related an experience of a profound sense of kinship with a God who suffered, as seen in Christ’s suffering and death on the cross. He felt God could understand his pain. In the same way that Christ died and rose in glory, the patient felt that in Christ he could transcend his suffering. Dying can be seen as a relief of suffering and an ultimate union with God.

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Some Christians may see suffering as a punishment for sin, but many others do not see a causal relationship. There is tremendous variation in how Christians come to understand this for themselves. Whether illness is an opportunity for purification and redemption or whether it is just a part of nature with which we must cope is much debated. In the midst of the debate is the example of Christ, a human and divine being who shows us by example that suffering can be transcended. In that message there is hope for humanity. An important metaphysical foundation for Judaism’s approach to illness concerns its understanding of illness and suffering. The Torah asserts in many places that God uses illness as one form of punishment, yet He is our ultimate healer. The later biblical tradition (especially the Book of Job) questions the first of those assumptions, and in our own day, when we know about germ theory and we know of many morally good people who have done nothing physically or morally wrong, but nevertheless suffer from serious illnesses, we certainly must follow Job’s lead in detaching illness from sin. Bad things do happen to good people, and that is a continuing problem for Jewish theology, but few Jews today would assert that illness is the product of sin. The second part of the Torah’s assertions, that God is our Healer, is very much still part of the Jewish tradition. That part of the Torah never was interpreted in such a way as to prohibit human beings from engaging in medicine; the contrary is true. Many rabbis also become physicians, and many Jews are engaged in medical research and practice. Jewish sources understand that the physician is God’s agent and partner in the ongoing act of healing, which includes physical and spiritual ministrations. When Jews are sick, they must consult a physician and pray to God. Often dubbed ‘‘the problem of evil,’’ this age-old question has produced many responses in Judaism. One that of Maimonides, is that God could have chosen not to create us at all, but once God’s love led Him to create us, God could make us only as finite beings because only God can be infinite. Finitude logically requires limits of time and space, however, and so it is inevitable that we must die. From Job on, and especially after the Holocaust and after the advent of germ theory, few Jews believe that we suffer for our own sins. To make that claim after so many innocents died in the Holocaust is an anathema. In the end, we really do not know why some suffer in life and in the dying process and others do not. It is one of the ultimate mysteries of life. The important thing is to focus on what we can do at any moment in time to help God fix the world. The Muslim tradition similarly offers perspectives on suffering and dying. Human beings have no choice but to return to God. Everyone does, and everyone will meet God. Some people go happily, knowing that they have submitted to the instructions brought by prophets and knowing that God will not break his promise to reward them. Others pay the price for their failure to adhere to the instructions. The Qur’an makes it clear that death is inescapable as the final stage in the life of all living things, including human beings: ‘‘Every soul shall taste death’’ (Qur’an 3:185). ‘‘Surely, death, from which you flee, shall encounter you. Then you shall be taken back to the knower of all things’’ (Qur’an 62:8).

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Life in this world is not an absolute life, because this life does not last very long, nor can it be depended upon in any way, so also death at the end of life is not an absolute death. It is, rather, a transferal from one mode of existence into another. The mode of existence called the grave is where things continue to happen and where the dead person continues to have experiences. Experiences are attributes of living beings, not dead things; hence, this is a death in relation to this world, not in relation to the whole of reality. When the Qur’an speaks of death, it speaks of it in relation to this world, and only God decides when this can happen. In the Muslim tradition, perfection belongs to God alone, and God governs this world by His divine mercy, love, and justice. If that is the case, then why suffer with illness and death? Is illness and death a punishment from God or a consequence of His wrath? Or, is it a fact of human life as we know it? According to the Qur’an, diseases are neither divine punishment nor a consequence of the wrath of God. Sometimes humans are tested by sickness or affliction, such as loss of wealth and death. Adversities such as physical illness are merely a part of human life; one must expect them. Learning to deal with them is a matter of religious practice. ‘‘It is God who created me, and it is He who guides me, who gives me food and drink, and when I am ill, it is He who heals me. He is the One who will cause me to die and then bring me back to life. He is the one I hope will forgive my mistakes on the day of Judgment’’ (Qur’an 26:80). Illness is not a consequence of sin. There are many innocent infants and children with severe and incurable illnesses. The Qur’an does not see illness as being due to the wrath of God because many of God’s beloved creatures also suffer. Their patience also is praised: ‘‘And Job, when he cried out to his Lord, dAdversities have seized me, while You are the most merciful.T I, God, responded to him and removed the adversity he was facingT’’ (Qur’an 21:83). ‘‘I, God, found Job very patient. How excellent was such a worshipper’’ (Qur’an 38:44). What matters is the manner in which one handles adversities and suffering: ‘‘I shall test you with a bit of fear and hunger, plus a shortage of wealth, lives and products. Give glad tidings to those who patiently persevere, and to who say, whenever some misfortune strikes them, dTo God, we belong, and to Him, we will returnT’’ (Qur’an 2:156–157). ‘‘And to be firm and patient in pain or suffering and adversity and through all periods of panic, such are the people of truth, the God loving’’ (Qur’an 2:177). The quality of a true believer must continue to be the same. Anyone who suffers an illness should remain patient, for there is no reward better or more enriching than that reserved for those who endure in patience. ‘‘How remarkable is the case of the believer! There is good for him in everything. When he receives good, he is grateful to God, and hence, rewarded. When he is afflicted with a calamity, he is patient [and] hence, rewarded’’ (Hadith collection). Illness acts as a purifying process if the ill person exercises patience. The prophet Muhammad said: ‘‘God purifies His worshippers with diseases and poverty, as fever sheds the sins of a year in one night.’’ God is also in touch with the ill and the one suffering, for ‘‘He answers the prayers of the patient sick

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persons.’’ Such feeling gives the sick person the ultimate hope for being connected directly with the ultimate source of healing and power. It is permitted for patients to complain of their pain and illness to a physician or friends, provided that they do not do so to express their anger or impatience with God. Ill people who maintain good faith are rewarded for all of the good deeds they would have performed in a state of health. Islam accepts physical illness and suffering as a fact of life and a passage to eternity. It directs our efforts to find the cure and the ways to cope. Muslims are taught to seek medical and technologic advances to find a way out, but only as gifts from God. Prophet Muhammad said, ‘‘Look for the cures of your diseases, as God has not sent a disease for which he has not sent a cure.’’ However, looking for the cure is done with the belief that only God gives the ability to cure.

Healing Society tends to equate healing with cure. When illness is incurable, there is a common misperception that healing also is not possible. Yet there is an opportunity for healing, even in the midst of an incurable illness. Healing can be manifested as inner peace; peace and reconciliation with God, self, and others; acceptance; letting go; and, finally, a peaceful death. In Christianity, healing can be achieved through one’s relationship with Christ and others. Healing occurs when one deepens the virtues of faith, hope, and love. By living a virtuous life, one can be healed. Seeking forgiveness and reconciliation with others and God, showing mercy and kindness to others, and acting with justice all can lead to healing. Ultimately the healer is God, so turning to God in prayer is one way to effect healing. Through faith and love, hope is the expected fruit of prayer, especially contemplative prayer. Healing comes from prayer. Some Christians also participate in healing rituals, such as the laying on of hands, or the Catholic tradition of receiving the sacrament of the anointing of the sick. These rituals are based on the belief that God can heal people through the Holy Spirit. Some Christians believe literally that people can be cured of their illness through prayer and ritual. Others see the healing as acceptance of whatever God wills. In the Lord’s Prayer, which is foundational for Christianity, one prays for God’s Will, not one’s own will. Although most people hope for a cure, acceptance of illness and of dying is achieved through acceptance of God’s will. In the Christian tradition, healing is so strongly rooted in Christ that it forms the foundation for caring in the Catholic health care systems. The Gospel accounts of Jesus’ ministry focus on his acts of healing: He healed a leper (Mt 8:1–4), gave sight to the blind (Mt 20:29–34), cured a woman who was hemorrhaging (Mt 9:20–22), and brought a young girl back to life (Mt 9:18). Jesus cared for more than the physical afflictions, however. He touched people deeply on all levels—physical, emotional, and spiritual (Jn 6:35). The compassion of Christ forms the basis of how Christians understand their interactions with others. With Christ as their model, Christians commit themselves to treat

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all people with love and compassion. Catholic health care systems see healing and compassion as a continuation of Christ’s ministry [39]. Judaism’s strong mandate to heal is rooted in its beliefs that one’s body belongs to God, that human beings have the right and the duty to seek to heal, and that suffering should be relieved. There is nothing in Judaism similar to the Christian doctrine that suffering can be salvational. On the contrary, Judaism would have us alleviate suffering as much as we can as part of our duties to God to help people take care of their bodies and as part of our duty to love our neighbor as ourselves (Lev 19:18). The Qur’an contains teachings related to personal behavior, attitudes, and dealings that guide the individual in the conduct of his or her daily affairs [40–42]. It also contains teachings that deal with general matters of society and, if applied correctly, lead to the achievement of general goals, such as freedom, justice, and improved economic conditions. All of these teachings help form a balanced, emotionally stable, and successful individual who is able to make better decisions and realize better achievements in life. Such an individual enjoys a much higher degree of well-being and, as a result, a better emotional state and a healthier physical condition [43,44]. The Qur’an first makes it clear to its readers that negative emotions are bad, undesirable, and harmful. The Qur’an then gives clues as to how to get rid of them. Some prohibited negative habits and emotions are: ‘‘Do not fear’’; ‘‘Do not despair’’; ‘‘Do not keep angry’’; ‘‘Seek refuge in God from helplessness and laziness.’’ The Qur’an suggests that people should act in light of the following factors: 1. What may cause negative emotions is not going to disappear ever. Because perfection is for God alone, everybody else and everything else is imperfect or deficient. 2. There is another list, the list of good things and emotions in the human. Because all good things are from God the almighty, we can call this a list of blessings. 3. If I focus on the list of blessings, not only will I feel cheerful and grateful, but I also will not be able to see the bad list clearly. Once the bad list fades out of my sight, the depression and related miserable emotions disappear too. This does not mean that one should never look at the bad list and have a bad feeling. One will look at the bad list, probably several times a day, every time something bad happens. After a few moments, however, one’s sight and attention should return to the list of blessings. The Qur’an achieves its healing and health-promoting effect by using three different approaches [42]: 1. The legal approach is through laws that prohibit matters that are hazardous to health (eg, disbelief, alcohol, excessive eating, sexual promiscuity, and

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homosexual relationships) and through laws that promote health (eg, prayers, fasting, ablution and bathing, and breast-feeding). This legislation has a direct impact on the health of the individual. 2. The guiding approach is through the provision of general rules and regulations that guide individuals in the conduct of their daily affairs. The guidance approach has an indirect, positive effect on the health and wellbeing of the individual. 3. The third approach is though the direct healing effect of the Qur’an on the various organs of the human body, which is called RUQIA. Could illness be completely eliminated if we use the Qur’an to the fullest extent? The answer is no, but we may be able to deal with illness in a better way by tolerating it and controlling it. Illness provides a challenge to the affected person to see whether he or she will find the cure. Illness may be viewed as a way of gaining forgiveness of one’s sins, as an investment to accumulate rewards for the suffering one, or as an educational experience to make one feel how others suffer and to make one appreciate the blessings of good health.

Religious and spiritual values Spirituality and religion may help people cope with suffering by finding meaning in the suffering. Spiritual and religious values in themselves may help people navigate illness and the process of dying. Three important values— forgiveness, hope, and belief in life after death—may play a role in the health care of patients. Hope is a powerful mediator of well-being. Hopelessness is associated with increased suicide and depression, but hope has the potential for supporting positive coping [45]. When patients face serious illness or loss and lose the sense of hopefulness they once had, the ability to find a different hope in their lives potentially could be healing. Forgiveness also may affect how patients cope with illness and with dying. Forgiveness can help people achieve an inner peace and peace with others and with God. Studies indicate that people who are able to forgive have less anxiety and depression, better health outcomes, increased coping with stress, and increased closeness to God and others [46]. Finally, being remembered may be an important spiritual task for people as they approach dying. Van de Creek and Nye [47] showed that most people, as they approach their dying, want to be remembered either through their works or through relationships. In the United States, 75% of people believe in some form of afterlife. People who are not part of any religious tradition also seek sources of hope. These can include the hope of finishing important tasks or realizing dreams, hope for reconciliation with loved ones, or hope for a peaceful death. The concept of the importance of forgiveness is not exclusive to religious traditions, as indicated by the interest in forgiveness that followed the events of September 11, 2001.

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Hope The Talmud asserts that we should not depend on miracles. Instead, we should do what we can to heal each other and the world and simultaneously pray to God to help. When someone has an incurable disease, however, that does not mean that he or she has nothing to hope for. Patients in such circumstances need to be taught for what they can reasonably hope. Such things might include hope that one will be able to cope with suffering; hope for remission, if not a cure; hope for enough time to achieve a particular goal (eg, to attend the wedding of a grandchild or to complete a family history); hope for the future welfare of one’s family; hope to reconcile with family members or others before death; hope to keep one’s dignity; and hope for life after life. Hope in the Christian tradition is similar. Even in the face of an incurable illness or unbearable despair, there can be hope for the healing of old wounds, for reconciliation with God and others, and for a dignified and peaceful dying. People also can hope to finish important goals or accomplish dreams or tasks. Finally, the hope of being in full union with God and reunited with loved ones in heaven brings peace to many Christians. The Catholic Christian funeral rite reflects the Catholic view of dying and the hopefulness within death and dying. The mass is a celebration of Christ’s Paschal mystery (ie, his living, dying, and rising). Christ’s life, death, and resurrection are looked on as one interconnected event [48]. In dying, Jesus transcended into a risen life. Christians who are baptized into Christ’s way similarly may see their dying as a transition into a new life. There is an acceptance of the mystery of death to find a new life fully with Christ. This is the ultimate source of hope for Christians. In the Eucharistic celebration, the body of Christ is the food of hope. It signifies the glory of Christ’s dying and rising into a new life that continues within each person and becomes more fully a reality in each person’s dying and resurrection. Many Christian saints have written of waiting their whole life to die to be fully united with Christ, welcoming death. St. Teresa of Avila wrote a poem entitled, ‘‘Vivo Sin Vivir En Mi,’’ in which she says, ‘‘I die, because I do not die’’ [49]. She welcomed death because of her urgent longing to be united with Christ in glory. Islam makes it clear to Muslims that matters are in the hands of God [40,43]. Death and life are God’s gifts. He gives and takes them as He wills, when He wills. ‘‘God merges day into night and night into day. He brings life out of death and death out of life. It is he who sustains the worlds’’ (Qur’an 3:27). Muslims ought to depend and rely on Him alone, as He answers prayers and responds to calls. His answer could come in a form of a skillful physician or an expert cardiologist. God may empower a machine to do more, and He may guide a nurse to add a perspective to the healing process others did not think about. Hope must not cease or vanish. Hope must continue to lead the patient and his or her loved ones. It is this hope that leads the caregiver to do more and the patient to persevere and persist. Yet when death comes, the Qur’an teaches no one can delay or slow down God’s plan.

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Forgiveness of self and others Forgiveness is central to the identity of Christians as described in the Lord’s Prayer: ‘‘Forgive us our trespasses, as we forgive those who trespass against us’’ (Mt 18:21-22). Just as we are forgiven by God, we also forgive others. St. Teresa of Avila wrote of our being forgiven by God as an experience in which we become aware of our sinfulness, and in that awareness, we become humble. Our humility is a truthful awareness of our sinfulness and our humanity. This awareness leads us to a greater understanding, acceptance, and forgiveness of others [46]. St. Teresa wrote further that if we are forgiven by God, we should be happy to forgive others; by doing so, we show our love to God. St. John of the Cross, a contemporary of St. Teresa, suggested that by not forgiving, one may be impeding one’s healing: ‘‘Attachment to a hurt arising from a past event blocks the inflow of hope into our lives’’ [50]. Forgiveness opens one’s heart to love. In the Christian tradition, practicing the virtues of hope, faith, and love result in healing. In contrast to Christianity, Judaism asserts that forgiveness has to be earned. One does that through the process of teshuvah, return to the proper path and to the good graces of God and the community. That process requires that people (1) acknowledge that they have done something wrong, (2) feel and express remorse, (3) attempt to repair the damage (eg, monetary, psychological, social), (4) ask for forgiveness, and (5) act differently when the same situation occurs again. The most egregious of sins—such as those committed by Hitler—can never be forgiven, but the Jewish tradition has strong faith that for most of what we do wrong, we can and should make amends and attain forgiveness. This is based on Judaism’s strong belief in human free will coupled with individual responsibility. We do not come into the world with original sin; we come in with a clean slate and with the ability to do bad and good. God does not expect us to be sinless, and that is why Jewish liturgy has us ask forgiveness from God three times each day. At the same time, we are not helpless. We can and have the duty to repair the wrongs we have done and change our ways for the better. God and human beings may forgive some wrongs even when the perpetrator does not go through all the steps of teshuvah. Contrary to some Christian representations of Judaism that portray Judaism as solely a religion of justice, Judaism makes plenty of room for love and mercy on the part of God and human beings. It asserts that people normally have to take responsibility for their actions and do what they can to repair whatever harm they have caused [51]. In Islam, God is called on by many names, one of which is Al-Ghafoor (The All-Forgiving One). He forgives and redeems. The road to earning His forgiveness and redemption is strong faith in His glory and righteousness. God does not choose to punish sinners, unless they insist on the sin and refuse to repent or regret their sin. Refusing to surrender to God’s will is a sin redeemed only with sincere repentance and a clear change in lifestyle on the part of the sinner. A new lifestyle is required, but what about individuals who sin but choose to repent at the deathbed? Islam teaches that God’s loving mercy also can extend to these people, if they regret what they have done, even if only minutes before

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they die. The Prophet Muhammad advised Muslims, caregivers, chaplains, and relatives of dying ones to remind the dying person of the need to recognize their mistakes before they die, in hope of redemption and forgiveness [40,43]. One soul, Islam teaches, cannot be held accountable for what another soul has done. Neither Jesus Christ nor Adam and Eve can ever be held accountable for what all human beings do. Each individual is to worry about his or her own sin. Clergy are not to forgive or condemn, but rather to pray for the patient, as they would pray for their own souls. Being remembered and life after death Being remembered is important for many people as they approach their death. People may want to write legacies or make videos with important messages for loved ones. They may want to adjust their treatments and even their pain medication to finish a book or an important project. Clinicians could ask patients about a dream list to elucidate some of the important values, people, and things that the patient may need to address in the final stage of living. Many people have some concept of a life after death. For some, it may be personal and may come from life experience or religious or cultural backgrounds. Christians believe in eternal life so that death is a passage or a transition to another life. Eternal life is essentially living in personal relationship with God through the grace of Jesus Christ and the gift of the Holy Spirit. This relationship begins on earth and continues in life after death. As mentioned earlier, Christ’s living, dying, and resurrection into eternal life are one continuum, and so it is for people. The faceto-face vision of God in eternal life is the perfection of the personal knowledge of God that began in faith on earth. Eternal life is absolute knowledge of and union with God. Although Judaism does not focus on life after death nearly as much as Christianity does, classic Judaism does assert belief in a life after death. Because nobody has died and come back to tell us what it is like, Jewish sources have multiple depictions of what it might be like, but no version that is authoritative. Judaism does not have anything as detailed as Dante’s Inferno or Paradisio. One Rabbinic depiction of life after death is that we all will study the Torah with God as our Teacher. One important feature of Rabbinic Judaism is that, with the exception of notoriously evil people such as Hitler, there is nothing like eternal fire and damnation. That would be inconsistent with God’s love and mercy. Individuals who will be punished for their sins after death will endure such punishment for, at most, a year, according to Rabbinic sources, then be forgiven by God. Relief from suffering comes from at least three sources: (1) company and support from visiting family and friends, (2) prayer and religious rituals that give one a connection to God and to ongoing life patterns, and (3) hope for continued meaning in life and in life after death. Muslims believe in life after death [52]. This world is but a test and a path to the hereafter. Muslims are encouraged to use this world wisely and do good so as to prepare for the life to come. In the Muslim tradition, God rewards good, even

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as He punishes evil. This being the case, the better one does, the more reward one will get from God. A Muslim basically is given more incentives to do good in the world than to do evil. All the actions of human beings will be recorded and presented to them on the Day of Judgment for Hisab (accountability). Only then can infinite justice be served. Resurrection and judgment are central in the divine scheme for humans. The nature of the future life of a person depends on his or her performance in this life, in the span between birth and death or, more accurately, between adulthood and death. For the Qur’an, the after death life is as concrete and palpable as the life in this world. There is a natural continuity between the two, and death is the passage between them. The Qur’an recurrently and untiringly emphasizes the unlimited mercy and forgiveness of God, but it links a person’s future with his or her performance on earth. As for intercession, the Qur’an raises the issue several times but seems to deny it from fellow human beings. God, prophet Muhammad, and the deeds of a good person are the only ways to obtain intercession for the dead in the life to come. God’s mercy may allow some to intercede out of His divine love for some. The dead person does not have to await the Day of Judgment to receive rewards and punishments, but instead begins his reckoning in the grave. The doors of the heavens are opened to the deceased, in accordance with their deserts, while they are yet in the grave. The intermediary stage, Barzakh, starts right after burial. On the Day of Judgment, deeds are weighed, and the person passes on to his or her final destiny. Death for Islam is a link or a passage between two segments of a continuous life: ‘‘God receives the souls when they die, and those who do not die, he receives them in their sleep; He then keeps those for whom He has decreed death while others He releases until the appointed term’’ (Qur’an 39:42). This transition or passage of death is portrayed by the Qur’an as being a difficult experience for the wicked, probably because they did not believe in an afterlife. The only life they knew was coming to an end, and this they spent in evil mongering. God judges with justice, and every human being is paid in full for what they have done. One must be ready for that stand in the divine court to be questioned about his decisions, behaviors, and actions. Nothing can be hidden, and death is the path to that assured end.

Medical ethics at the end of life Each of the three major religious traditions discussed here offer different perspectives on ethical issues related to end-of-life care. Life support, feeding, euthanasia Similar to all other ancient traditions, Jewish sources could never even contemplate, let alone deal with, modern abilities to sustain life. Rabbis who try

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to apply tradition to new medical abilities sometimes make conflicting decisions [34,53]. In general, Judaism’s strong mandate to heal generally leads Jews to be aggressive in medical care. When it is clear that one’s disease is incurable, however, most rabbis would permit withholding life-support systems and artificial nutrition and hydration. Although some rabbis emphasize the tradition’s push to sustain life, others point out that Adam and Eve were not allowed to eat of the Tree of Life, that we are by nature mortal, and that, as Ecclesiastes says, ‘‘There is a time to be born and a time to die.’’ In Christianity, specifically Catholic Christianity, a person has a moral obligation to use ordinary means of preserving life, but a person may forgo extraordinary means of preserving life if those means do not offer a reasonable hope of benefit or if they entail an excessive burden or impose excessive expense on the family or community [39]. In general, there is a recommendation in favor of providing nutrition and hydration to all patients as long as this is of sufficient benefit to outweigh the burdens involved to the patient. The free and informed judgment made by a competent adult patient concerning the use or cessation of life-sustaining measures always should be respected and normally complied with unless it is contrary to Catholic moral teaching. Euthanasia and assisted suicide are not permissible according to Catholic doctrine. Patients should be kept as free of pain as possible so that they may die comfortably and with dignity. Medicines may be given that treat pain even if the therapy may shorten the person’s life, so long as the intent is not to hasten death. Suicide is forbidden in Islamic law. There is a direct and explicit text in the Qur’an and Hadith on the issue of suicide. Two well-known Qur’anic verses speak to this issue: ‘‘And do not cast yourselves into destruction’’ (Qur’an 2:195), and ‘‘And kill not yourselves’’ (Qur’an 4:29). According to Islamic law, God is the Creator of the human life. A person does not ‘‘own’’ his or her life and cannot terminate it. One has to persevere in the face of sickness and ask God for support. God is the only one who has the right to end the life of a person. Islamic law guides people to understand that trustworthy physicians who believe in the sanctity of life can call for the discontinuation of life-support machines. The criterion should be based on the determination of the death of the mind and the heart, with no doubt. The imminent death of a person does not give room to terminate life. In Islam, if medical treatment is available, seeking medical support is an obligation of the patient or guardians [43]. Organ transplantation, advance directives All movements in American Judaism support organ transplantation. The Conservative Movement’s Committee on Jewish Law and Standards has even ruled that making one’s body and the bodies of one’s relatives’ available for transplantation after death is not only a permissible and good thing to do, but also a positive duty. There is some concern with regard to heart transplantation because one may not kill one person in the name of trying to save someone else. Even the Chief Rabbinate of the State of Israel has approved heart transplants,

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accepting full brain death (including the brainstem) as sufficient to establish death. All four movements in American Judaism have produced advance directives in accordance with this policy, incorporating their own understanding of how Jewish law should be applied to end-of-life care [53]. The transplantation of organs from living donors is morally permissible when such donation would not sacrifice or seriously impair an essential bodily function, and the benefit to the recipient is proportionate to the harm done to the donor. Organ donation from a deceased person also is allowable. Catholic health care institutions should encourage and provide the means whereby individuals who wish to do so may arrange for the donation of their organs for ethical and legitimate purposes. Organs should not be removed until it is determined that the person has died. To prevent conflict of interest, the physician who determines the time of death should not be a member of the transplant team. Catholic organizations are not permitted to use human tissue obtained by abortions for research and therapeutic purposes [39]. In the Muslim tradition, the human body is sacred even after death [40]. The Messenger of Allah said, ‘‘Breaking the bone of a dead person is similar to breaking the bone of a living person.’’ All organs of a human body, whether one is a Muslim or a non-Muslim, are sacred. To take benefit from any part of a human is unlawful [54].

Rituals Before death In addition to ensuring that the person has left a will to distribute his or her property and praying with and for the patient and visiting often, the only specific ritual that Judaism mandates is tzidduk ha-din, a prayer said by or for the patient in which the patient prays for God’s forgiveness and accepts God’s judgment. For Catholic Christians, sacraments are a sign of God’s presence. They are a source of grace and strength. For the sick and dying, frequent receipt of the Eucharist provides comfort and strength. Anointing of the Sick, once referred to as ‘‘Last Rites,’’ is a sacrament that many Catholics want to receive when ill and especially when dying. This sacrament provides the sick with a reminder of God’s love, and it helps to foster a sense of wholeness and healing. Another ritual is called Viaticum, which means ‘‘on the way with you.’’ The ritual includes reading of scriptures, renewal of baptismal vows, an exchange of the sign of peace, and receiving communion. The phrase said at the end, ‘‘May the Lord protect you and lead you to eternal life,’’ blesses the patient and provides a connection with a ritual that is at the core of Catholic life. Catholic and other Christian faiths have certain ritual prayers and songs that are sung around the bed of the dying person. In Islamic tradition, when a person is dying, relatives and close friends are normally present because Islam recognizes no intermediaries between humans

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and God. It has, strictly speaking, no clergy. Anyone knowledgeable of the faith may perform certain administering sacraments [40,52], as follows: 1. Ask the dying person to recite the shahadah, testimony of faith: ‘‘There is no God but the Almighty Creator, and Muhammad is the messenger of God.’’ One may do it on behalf of the dying person only if the dying person is unable to do it. 2. Utter the following statement: ‘‘Allah, God the Almighty, is great.’’ 3. Say the following prayers: ‘‘Oh God! I ask You a perfect faith, a sincere assurance, a reverent heart, a remembering tongue, a good conduct of recommendation and a true repentance, a repentance before death, rest at death and forgiveness and mercy after death, clemency at the reckoning, winning paradise and escape from fire, all by Your mercy. O Mighty One, O Forgiver, Lord increase me in knowledge and join me unto good. O God, may the end of my life be the best of it, may my closing acts be my best acts and may the best of days be the day when I shall meet You. Amen.’’ 4. When the patient has breathed the last breath, the eyes should be gently closed and the following prayers recited on the deceased’s behalf: ‘‘O God! Make his/her death light for him/her, and render easy what he/she is going to face after this, and bless him/her with Your support and make his/her new abode better for him/her than the one he has left behind. Amen.’’ After death After it is clear that the Jewish person has died, one of the family members closes the eyes of the deceased. Modesty is preserved even in death, so men deal with a male body and women deal with a female one. The body is washed for both hygienic and ritual purposes in a process called tohorah, then clothed in takhrikhin, a simple linen sheet. A guardian (shomer) stays with the body overnight, usually reciting Psalms and other religious texts, to indicate that we do not abandon a person in death. Then as a matter of honor to the dead person and body (kavod ha-met), the body is not buried in an open casket, for the body disintegrates rapidly after death; instead the body is buried in a closed casket. Although some Reform Jews cremate their dead, Conservative and Orthodox Jews do not because that represents the ultimate, wanton destruction of the body that belongs to God. After the Holocaust, few Jews want to do to their loved ones what the Nazis did to so many Jews. After burial, a 7-day mourning period (shiva) ensues, in which family and friends visit the mourners at their home to talk about the deceased, to form daily prayer quorums morning and evening, and to do daily chores, such as preparing food, so that the mourners can focus on mourning their loved one. Parents, children, siblings, and the deceased’s spouse are charged with the duty of ‘‘sitting shiva,’’ that is, of staying at home for the week to mourn their dead. After that week, mourners continue to say a memorial prayer for the deceased (Kaddish) as part of daily services until 30 days have passed since the burial; for parents, that period lasts 11 months. During these

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periods of mourning, festivities are avoided. On the yearly anniversary of the death, all of the primary relatives repeat the Kaddish [55]. Christian tradition has funeral services and rites that vary among the different Christian traditions, such as wake services, funeral mass, and graveside blessing. It is common for people to say specific prayers for the dead. In Catholicism, people also may offer masses in remembrance of loved ones for years after the person has died. Islam encourages attending funeral services as a meritorious act, whether or not those who participate in the services personally knew the deceased. Many services may be held at the same time in different places for the same person. These funeral services are considered spiritually beneficial for the dead and for individuals who participate in the services. The Islamic tradition enjoins burial of the dead without unnecessary delay, and burial rights are simple and austere. Wailing loudly for the dead is forbidden, but grief and sadness are acceptable. It is expected, however, that patience be observed. When entering the cemetery, one should recite a special greeting to the deceased ones by saying: ‘‘Peace be upon all of you, all people of graves!’’ One should be silent and use this time for personal reflections and self-examination. The graves are dug on a southeast-northwest line. The head of the deceased is directed toward the northwest in the United States because that is the direction for the five daily prayers as Muslims direct them toward the city of Mecca. Bodies are expected to be laid on the soil and dust [52].

Practical tools for spiritual care Spirituality can be defined not only as the relationship with the transcendent, but also with others. The connections that physicians, other health care providers, and families make with the ill and dying patient is, at its root, spiritual. The care that the physician provides is rooted in spirituality through compassion, hopefulness, and a recognition that, although a person’s life may be limited or no longer productive, it remains full of possibility [56]. Although a person no longer can have curative therapy, he or she still can find meaning and purpose in life. Patients who are seriously ill still can have relationships, and they still can heal. The physician and other care providers can offer the opportunity for healing by being present with the patient. Patients want to have warm, caring relationships with their physicians [13]. Studies document the importance of the physician-patient relationship [57–63]. In his 1927 medical classic, The Care of the Patient, Peabody [64] wrote: ‘‘One of the essential qualities of the clinician is interest in humanity, for the secret care of the patient is in caring for the patient.’’ This relationship can have potential, positive impact on health care outcomes, compliance, and patient satisfaction [57,61,62,65–67]. Communicating compassionately with patients about their illness, prognosis, values, and preferences is crucial. By addressing issues related to prognosis in the context of values and beliefs, conversations often can be more personal and less

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technical than simply relating statistics about prognosis. Knowing how to obtain a spiritual history is crucial. There are several assessment tools: FICA [3,7], Hope [68], and Spirit [69]. These tools are intended to be used as part of the social history in the initial assessment of patients. Spiritual issues can be discussed at follow-up visits as appropriate. Spiritual care is interdisciplinary; the physician, nurse, social worker, psychologist, and chaplain all are responsible for addressing spiritual issues with patients. The chaplain or clergy is the trained spiritual care provider, however, so he or she should do the more intense spiritual counseling. Chaplains can work with patients of any religious or nonreligious background. One of the key components of this relationship is the ability of the clinician to be totally present to their patient (ie, the practice of compassionate presence). This means that the clinician should bring his or her whole being to the encounter and should place his or her full attention on the patient and not allow distractions, such as time pressures, focus on the biomedical aspects of treatment, or other thoughts, interfere with that attention. Integral to this is the ability to listen to the patient’s fears, hopes, and dreams and to be attentive to all dimensions of the lives of the patient and the family: the physical, emotional, social, and spiritual. Some clinicians suggest that current medical practices do not allow enough time for this. Being wholly present to the patient is not time dependent, however. It simply requires the intent on the part of the clinician to be fully present for the patient. When the physician determines what the patient’s spiritual beliefs are, he or she can ask if there are spiritual practices that are important to the patient. These might be prayer, meditation, listening to certain music, enjoying solitude, or writing poetry. One can incorporate these practices as appropriate. Chaplains and other spiritual care providers (spiritual directors, ministers, priests, rabbis, imams, and others) are experts trained in the area of spirituality and religion. Working with these spiritual care providers is essential to holistic care. Chaplains should be integrated into interdisciplinary health care teams. Hospice teams often have chaplains as part of the care team.

Summary Spirituality is essential to the care of patients. In end-of-life care, attending to spiritual needs ensures that a dying patient has the opportunity to find meaning in the midst of suffering and to have the opportunity for love, compassion, and partnership in their final journey. This article summarizes some of the beliefs and traditions from Judaism, Islam, and Christianity that affect people as they face their own dying and mortality. People who do not participate in any formal religion also have a drive to find meaning in the midst of suffering and dying. They may find this in personal ways. This article has presented some practical tools to help clinicians address and respect spiritual and religious issues of patients. It is crucial that our culture and our systems of care for the dying include a spiritual approach to care so that the dying process can be meaningful and even filled with hope.

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References [1] Puchalski C. Caregiver stress: the role of spirituality in the lives of family/friends and professional caregivers. In: Carter R, editor. Caregiving book series. Americus (GA)7 Rosalynn Carter Institute for Human Development, Georgia Southwestern State University; 2003. [2] Puchalski C. Task force report: spirituality, cultural issues, and end of life care. In: Association of American Medical Colleges report III: contemporary issues in medicine: communication in medicine, medical school objectives project October 1999 (MSOP III). Washington, DC7 Association of American Medical Colleges; 1999. p. 25 – 6. [3] Puchalski C. Spirituality. In: Berger A, Portenoy R, Weissman D, editors. Principles and practice of palliative care and supportive oncology. 2nd edition. Philadelphia7 Lippincott Williams & Wilkins; 2002. p. 799 – 812. [4] Kagawa-Singer M. Diverse cultural beliefs and practices about death and dying in the elderly. In: Wieland D, Benton D, Kramer B, editors. Cultural diversity and geriatrics care: challenges to the health professions. Binghamton (NY)7 Haworth Press; 1994. p. 101 – 16. [5] Puchalski C. A time for listening and caring: spirituality and the care of the chronically ill and dying. New York7 Oxford University Press; 2004. [6] Puchalski C. A systematic review of spiritual and religious variables in Palliative Medicine, American Journal of Hospice and Palliative Care, Hospice Journal, Journal of Palliative Care, and Journal of Pain and Symptom Management. Palliative and Supportive Care 2003;1:7 – 13. [7] Puchalski C. Spirituality and end-of-life care: a time for listening and caring. J Palliative Med 2002;5:289 – 94. [8] Koenig H, McCullough M, Larson D. Handbook of religion and health. New York7 Oxford University Press; 2001. [9] Gallup G. Religion in America. Princeton (NJ)7 Princeton Religion and Research Center; 1990. [10] Survey of 1,037 adults, 18 years and older. Gallup Organization for CNN/USA Today, December 9–12, 1999. [11] Conrad N. Spiritual support for the dying. Nurs Clin North Am 1985;20:415 – 26. [12] Moberg D. Spiritual well-being of the dying. In: Lesnoff-Caravaglia G, editor. Aging and the human condition. New York7 Human Sciences Press; 1982. p. 139 – 55. [13] George H. Gallup International Institute. Spiritual beliefs and the dying process: a report on a national survey. Conducted for the Nathan Cummings Foundation and the Fetzer Institute. 1997. Available at: http://www.ncf.org/reports/rpt_fetzer_contents.html. Accessed October 6, 2004. [14] McNichol T. The new faith in medicine. USA Weekend 1996;April 5–7:4 – 5. [15] Ehman J, Ott B, Short T, et al. Do patients want physicians to inquire about their spiritual or religious beliefs if they become gravely ill? Arch Intern Med 1999;159:1803 – 6. [16] King D, Bushwick B. Beliefs and attitudes of hospital inpatients about faith, healing, and prayer. J Fam Pract 1994;39:349 – 52. [17] Yankelovich Partners, Inc. TIME/CNN June 12–13, 1996. [18] Levin J, Schiller P. Is there a religions factor in health. J Relig Health 1987;26:9 – 36. [19] Cook J, Wimberly D. If I should die before I wake: religious commitment and adjustment to death of a child. J Sci Stud Religion 1983;22:222 – 38. [20] Roberts J, Brown D, Elkins T, et al. Factors influencing views of patients with gynecologic cancer about end-of-life decisions. Am J Obstet Gyneco1 1997;176:166 – 72. [21] Yates J, Chalmer B, St. James P, et al. Religion in patients with advanced cancer. Med Pediatr Oncol 1981;9:121 – 8. [22] McNeill JA, Sherwood GD, Starck PL, Thompson CJ. Assessing clinical outcomes: patient satisfaction with pain management. J Pain Symptom Manage 1998;16:29 – 40. [23] Kaldjian LC, Jekel JF, Friedland G. End of life decisions in HIV patients: the role of spiritual beliefs. AIDS 1998;12:103 – 7. [24] Tsevet J, Pulchalski CM, Sherman SN, et al. Spirituality and religion in patients with HIV/AIDS. JGIM 2003;18(suppl 1):234. 26th annual meeting of the Society of General Internal Medicine, Vancouver, BC, May 2003.

C.M. Puchalski et al / Clin Geriatr Med 20 (2004) 689–714

713

[25] Cohen SR, Mount BM, Stroble MG, et al. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. a preliminary study of validity and acceptability. J Palliative Med 1995;9:207 – 19. [26] Doka K, Morgan J, editors. Death and spirituality. Amityville (NY)7 Baywood Publishing Company; 1993. p. 151 – 70. [27] Foglio J, Brody R. Religion, faith and family medicine. J Fam Pract 1988;27:473 – 4. [28] Bearon L, Koenig R. Religious cognitions and use of prayer in health and illness. Gerontologist 1990;30:249 – 53. [29] Benson R. Timeless healing: the power and biology of belief. New York7 Simon & Schuster; 1996. [30] Pargament KI, Ensing DS, Falgout K, Olsen H, Reilly B, Van Haitsma K, et al. God help me: I. religious coping efforts as predictors of the outcomes to significant negative life events. Am J Commun Psychol 1990;18:793 – 824. [31] Pargament KI, Smith BW, Koenig HG, Perez L. Patterns of positive and negative religious coping with major life stresses. J Sci Study Relig 1998;37:710 – 24. [32] Astrow A, Puchalski C, Sulmasy D. Religion, spirituality, and health care: social, ethical, and practical considerations. Am J Med 2001;110:283 – 7. [33] Wiseman JM. The body in spiritual practice: a new asceticism. Spiritual Life 2001;47:200 – 15. [34] Dorff EN. Matters of life and death: a Jewish approach to modern medical ethics. Philadelphia7 Jewish Publication Society; 1998. [35] Cassell EJ. The nature of suffering and goals of medicine. New York7 Oxford University Press; 1991. [36] Brody H. My story is broken, can you help me fix it? Lit Med 1994;13:79 – 92. [37] Frankl V. Man’s search for meaning. New York7 Simon & Schuster; 1997. [38] Lo B, Quill T, Tulsky J. Discussing palliative care with patients. ACP-ASIM End-of-life care consensus panel. Ann Intern Med 1999;130:744 – 9. [39] US Conference of Catholic Bishops. Catholic and religious directives. 4th edition. Washington, DC: USCCB Publishing; 2001. [40] Ali A, translator. The meaning of the holy Qur’an. Beltsville (MD): Amana Publications; 2001. [41] Ulman M. Islamic medicine. Edinburgh7 Edinburgh University Press; 1978. [42] Rahman A. Qur’anic sciences. Portland, (OR)7 The Muslin Schools Trust; 1981. [43] Athar S. Islamic perspective in medicine. Indianapolis7 American Trust Publications; 1993. [44] Ebrahim AFM. Biomedical issues: Islamic perspective. Malaysia7 AS Noordeen; 1988. [45] Breitbart W, Rosenfeld B, Pessin H, Kaim M, Funesti-Esch J, Galietta M, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000; 282:2907 – 11. [46] Puchalski C. Forgiveness: spiritual and medical implications. Yale Journal for Humanities in Medicine. Available at: info.med.yale.edu/intmed/hummed/yjhm/spirit/forgiveness/ cpuchalski.htm. Accessed October 6, 2004. [47] Van de Creek L, Nye C. Trying to live forever: correlates to the belief in life after death. J Pastoral Care 1994;48. [48] Miller EJ. A Roman view of death. In: Doka KJ, Morgan JD, editors. Death and spirituality. Amityville (NY)7 Baywood Publisher; 1993. p. 33 – 50. [49] St Teresa of Avila. Collected works of St. Teresa of Avila, vol. 3. Kavanaugh K, Rodriguez O, translators. Washington, DC: ICS Publications; 1985. [50] St. John of the Cross. The spiritual canticle. In: The collected works of St. John of the Cross. Kavanaugh K, Rodriguez O, translators. Washington, DC: ICS Publications; 1991. p. 461–630. [51] Dorff E. Love your neighbor and yourself: a Jewish approach to modern personal ethics. Philadelphia7 Jewish Publication Society; 1998. [52] Johnson C, editor. How different religions view death and afterlife. Philadelphia7 The Charles Press; 1991. [53] Dorff EN. Hope and destiny. In: Love your neighbor and yourself: a Jewish approach to modern personal ethics. Philadelphia7 Jewish Publication Society; 2003. [54] Adam D. Available at: www.themodernreligion.com. Accessed October 6, 2004.

714

C.M. Puchalski et al / Clin Geriatr Med 20 (2004) 689–714

[55] Lamm M. Consolation: the spiritual journey beyond grief. Philadelphia7 Jewish Publication Society; 2004. [56] O’Connor P. The role of spiritual care in hospice. Am J Hosp Care 1988;5:31 – 7. [57] DiBlasi Z, Harkness E, Ernst E, Georgiou A, Kleijnen J. Influence of context effects on health outcomes: a systematic review. Lancet 2001;357:757 – 62. [58] Bensing J. Doctor-patient communication and quality of care. Soc Sci Med 1991;32:1301 – 10. [59] Backmeyer J. Doctor-patient relationships: the heart of the matter. Alumni Bull Sch Dent Indiana Univ 1981;Fall:34 – 6. [60] Inui S, Carter WB, Kukull WA, Haigh H. Outcome-based doctor-patient interaction analysis: I. Med Care 1982;20:535 – 49. [61] Carter WB, Inui S, Kukull WA, Haigh VH. Outcome-based doctor-patient interaction analysis: II. Identifying effective patient behavior. Med Care 1982;20:550 – 66. [62] Inui TS. Establishing the doctor-patient relationship: science, art, or competence? Schweiz Med Wochenschr 1998;128:225 – 30. [63] Bond BR. Doctor-patient relationships. N Z Med J 1994;107:253 – 4. [64] Peabody W. The care of the patient. Cambridge (MA)7 Harvard University Press; 1927. [65] Poulton DC. Use of the consultation satisfaction questionnaire to examine patients’ satisfaction with general practitioners and community nurses. Br J Gen Pract 1996;46:26 – 31. [66] Robertson WH. The problem of patient compliance. Am J Obstet Gynecol 1985;152(7 Pt. 2): 948 – 52. [67] Mira JL, Aranaz J. Patient satisfaction as an outcome measure in health care. Med Clin (Barc) 2000;114(Suppl 3):26 – 33. [68] Levin JS, Larson DB, Puchalski CM. Religion and spirituality in medicine: research and education. JAMA 1997;278:792 – 3. [69] Maugans TA. The SPIRITual history. Arch Fam Med 1996;5:11 – 6.