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Mortality, Vol. 8, No. 4, 2003

Restoration or transformation? Choosing ritual strategies for end-of-life care GARY E. MYERS Southern Illinois University School of Medicine, 913 N. Rutledge Street, P.O. Box 19603, Springfield, Illinois, 62794-9603, USA

ABSTRACT Ritual care of the dying is an important aspect of end-of-life care that can help to comfort and support patients as they come to terms with their mortality. We identify two distinctive ritual strategies, those of restoration and transformation, which organize and interpret the experience of dying. Restorative strategies are associated with rituals of modern medicine that imply that science and technology can transcend the existential limits of human life. Transformative strategies are associated with the ritual practices of traditional healers and religious communities that openly acknowledge such limits and assist the dying by helping them to find sources of hope and meaning that transcend personal existence. This discussion examines medicine’s use of a ritual of restoration that employs excessively optimistic prognoses and treatment-focused discussions to respond to the spiritual and existential needs of terminally ill patients by reframing dying as a serious, but potentially curable, illness. The flaws in and harmful effects of this ritual practice are identified, followed by the argument that traditional rituals of transformation, such as those found in the Psalms, can be adapted by medicine to improve end-of-life care.

Introduction Rituals are patterned repetitive behaviours that organize and give meaning to human experience at the psychological, social, and cultural levels (Durkheim, 1965; Geertz, 1973; Von Gennep, 1960; Turner, 1967). They may be as formal as a religious ceremony or as informal as a handshake. Early studies of ritual focused primarily on its ancient origins and its religious function, more recently scholars have studied how rituals construct and transmit cultural meaning. Anthropologist Arthur Kleinman (1988), for example, has suggested that even scientific pursuits, such has medicine, rely on rituals to organize and interpret data and to initiate patients into its worldview. This discussion further examines the effects of ritual practices on the practice of medicine; particularly the practices that constitute end-of-life care.

Correspondence to: Gary E. Myers, Ph.D., 913 N. Rutledge Street, P.O. Box 19603, Springfield, Illinois 62794-9603, USA. Tel: 217-545-4261; Fax: 217-545-7903; Email: ISSN 1357-6275 (print) ISSN 1469-9885 (online)/03/040372-16 DOI: 10.1080/13576270310001604013


2003 Taylor & Francis Ltd

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Modern medicine has been defined as a thoroughly rationalistic science in which questions of ultimate meaning, purpose, and transcendence have no legitimate place (Kleinman, 1988). Yet patients, especially patients at the end of life, regularly present their spiritual or existential concerns to their physicians (Fox, 1988). This creates a dilemma for many physicians, because their patients’ deepest concerns often lie outside the purview of the modern medical paradigm, which formally limits itself to identifying the causes and mechanisms of disease and prescribing treatments. The dilemma lies in this: patients experiencing spiritual or existential crises require ritual or symbolic forms of care that can help them meaningfully to come to terms with and integrate threatening life changes (Lifton, 1983), but the medical paradigm that determines the practice of physicians does not support such care. Many physicians manage this dilemma by recasting their patients’ spiritual and existential needs as medical needs that can be met through medical treatments. Through the ritualistic use of the standard scientific practices of medicine— diagnosis, prognosis, and treatment—physicians often manage rather than accept and understand the anguish of their dying patients. To illustrate how a physician might use prognoses and the consideration of treatment options to ritualize dying, and to identify the risks of this ritual practice, we shall analyse a physician-patient dialogue in which the spiritual and existential concerns of the patient are reframed using a ritual of restoration. We call this a ritual of restoration because it suggests to dying patients that they have a disease that can respond to treatment and that their health might be restored. We contrast this medical ritual with a ritual strategy of transformation, which can help dying patients to shift their identification from what is transient and now passing away, such as physical life, to what transcends death, such as the contributions one’s life will make to subsequent generations. This ritual form, exemplified in the Psalms, is commonly used by traditional and religious cultures to respond to the irremediable suffering of the human condition (Eliade, 1959). The contrast between these ritual forms yields both a critique of the way in which medicine typically deals with death and dying and recommendations for medical practices that can better meet the needs of dying patients. In conclusion, an alternative approach to caring for the spiritual and existential needs of dying patients, based on the strategy of transformation, is explored, suggesting implications for training physicians and other caregivers in end-of-life care. The general function of rituals The human need to make sense of life events is fundamental and universal. This is especially true in the case of serious or terminal illness. We need to ‘‘make sense’’ of events, most importantly, because the events themselves lack inherent order and meaning. Events become meaningful only as they are incorporated into and interpreted within larger cultural contexts of meaning. For example, random words scattered on a page lack sense until they are organized into sentences. Just as a writer employs the rules of grammar to organize words into meaningful

374 Gary E. Myers expressions, culture uses traditions and ideologies as a kind of ‘‘cultural grammar’’ to organize experience and give meaning to life events. Ritual provides the means by which an individual’s personal experience becomes incorporated into and organized by the shared meanings of culture. Take, for example, how culture gives meaning to a woman’s experience of menopause by ritually including this biological process in a larger system of shared meaning and value. Western cultures ritualize menopause as a preventable illness. Through the ritual practice of medical visits, tests, hormone replacement therapy, and other treatments, what is considered to be a normal life transition throughout most of the world takes on a pathological meaning once it is incorporated into the medical worldview. In contrast, some traditional cultures ritually celebrate the arrival of a woman’s midlife and show respect for her wisdom and experience (Adams et al., 1999). Cultures that place high value on youthful expressions of beauty, vitality, and fertility typically interpret menopause negatively as the sign of a woman’s decline or as a disease that could be avoided with proper treatment (Adams et al., 1999). However, cultures that value the wisdom and skills that come with age celebrate menopause as the sign that a woman is free of the restrictions of the childbearing years and is now able to make broader contributions to the community (Berger, 1999). Clearly, the meaning of menopause is not immediately given in the process itself. Biological processes acquire their meaning and experiential impact from the cultural context in which they occur. This cultural construction of the meaning of biological events, through ritual, is especially germane to our consideration of how medical rituals can shape the experience of terminally ill patients. In the following, we shall examine how the medical encounter can influence patient decisions and expectations by blurring the distinction between being seriously ill and dying. Ritual aspects of the physician – patient interaction The modern encounter between physician and patient is perhaps one of the most unlikely occasions to consider as a ritual interaction—unlikely because we have come to expect that what happens between physician and patient is guided by the rationality of science, which typically excludes symbolic forms of treatment like ritual practices. Yet, medical anthropologist Arthur Kleinman (1988) clearly identifies the ritual character of the interaction between physicians and patients. Interactions that seem routine and inconsequential are in fact powerful rituals that shape the meaning of life-events. As an example, he calls attention to the changes that occur as a result of making a written record of the case. By the act of recording the case, ‘‘illness is made over into a disease, person becomes patient, and professional values are transferred from the practitioner to the ‘case’’’ (p. 130). The sick person is objectified, becomes a patient, and is thereby included in and defined by the values and core beliefs of modern medicine. Once objectified by this medical ritual, the values and perspectives of medicine will determine the meaning of the person’s illness and even the illness experience itself (Frank, 1995).

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Interestingly, these medical rituals parallel the rituals used by healers in traditional societies (Elks, 1997), although the modern rituals initiate patients into a view of self and the world that is quite different from that of indigenous, nonindustrial cultures. Among common practices, traditional healers require a confession of the patient’s misdeeds, just as the modern physician takes the patient’s medical history and hears his or her story. Traditional healers use stylized gestures to touch the patient, such as the laying-on of hands among the Kalahari Kung (Katz, 1982), just as Western healers use specific, ritualized examination procedures involving touching the wrist, thumping the back, aided by special instruments (stethoscopes, blood pressure monitors, etc.). Both traditional healers and modern physicians use ritualistic approaches to gather and interpret data, as well as to introduce patients to their respective beliefs about illness. Kleinman concludes that medical encounters are indeed secular rituals because they ‘‘formally replicate a social reality in which core values [of culture] are reasserted and then applied in a reiterated, standardized format to a central problem in the human condition. Like religious rituals, secular rituals express and manipulate key symbols that connect a shared set of values and beliefs to practical action’’ (1988, p. 131). Rituals are the means by which an individual’s illness experience becomes interpreted by a culture’s shared construction of reality. On the surface, modern medical rituals differ from those of traditional communities, or even of modern religious communities, in that they appear to be the rational application of medical science to the biological disorders of patients. They invoke neither deities nor cosmological myths; but like traditional rituals, they express and manipulate symbols in order to give meaning to patients’ symptoms. This meaning provides the rationale for physicians’ recommendations for treatment and patients’ decisions to accept treatment by connecting both to broader cultural beliefs and values. Regardless of the type of healer, whether scientific or traditional, each time a healer performs a ritual, he or she recreates the dominant worldview of the culture and incorporates the patient into it (Kleinman, 1988). This ritual incorporation is usually beneficial to patients because it brings order and meaning to the confusion and concern that usually accompany unexplained symptoms. However, when a terminally ill patient’s experience of dying is incorporated into and interpreted by a cultural worldview that attempts to avoid facing mortality by framing a terminal condition as a curable disease, the patient may not have his or her most important needs met (Bauman, 1992). Ritual strategies for responding to spiritual and existential crises When the foundational meanings of a patient’s life are threatened, as often happens when a terminal illness is diagnosed, he or she will likely experience a spiritual or existential crisis. A crisis in this sense occurs when one has become separated from the core meanings that had previously given purpose and direction to one’s life. Spiritual and existential crises result in an especially severe form of suffering that includes experiences of cognitive dissonance, anxiety, fear of abandonment, loss of hope, and despair (Marrone, 1999). Without the organizing

376 Gary E. Myers and integrating effects of meaning, purpose, and value, life becomes painfully chaotic. The emotional chaos that frequently attends the discovery that one is terminally ill is perhaps the most poignant instance of a disorienting crisis that begs for a reestablishment of order and meaning. When physicians use a strategy of restoration to respond to such a plea, this ritual may initially organize and comfort patients by focusing them on available treatments, but it often delays or entirely prevents dying patients from receiving the prognostic information that they need in order to come to terms with their approaching death and to plan their end-oflife care (Davidson et al., 1995; Degner et al., 1997; Kutner et al., 1999). Indeed many physicians are reluctant to provide terminally ill patients with prognoses that reflect the physician’s best estimate of life expectancy, even when patients request them (Hanson, Danis, & Garris, 1997; Lamont & Christakis, 2001). Avoiding the discussion altogether, interpreting poor treatment outcomes simply as indications that it is time to change therapies, or intentionally giving patients prognoses that are more optimistic than an objective assessment could support are typical tactics that physicians use to circumvent discussing unfavourable prognoses with their patients (Lamont & Christakis, 2001). These tactics support patients’ formation of optimistic illusions about the effectiveness of treatment and the possibility of cure (Edinger & Schapira, 1984: Mackillop et al., 1988; The et al., 2000), which encourages them to undergo treatments that more objective medical opinions would consider futile (Frankl et al., 1989; Murphy et al., 1994; Weeks et al., 1998). Unfortunately, rituals of restoration lack the capacity to help dying patients with what many of them really need, that is, to meaningfully accept and integrate mortality into their lives. In short, their rituals lack transcendence. Medical rituals manage patients’ fear, anxiety, and sense of hopelessness by encouraging them to become treatment focused. While curative treatments are appropriate for solving patients’ treatable medical problems, when used as rituals for the dying, they are inappropriate when they reinterpret patients’ experience of mortality as an encounter with a treatable illness. Although this ritual practice may distract patients from the anguish of facing their mortality and delay their coming to terms with death, it can also deter patients from finding sources of support that could sustain them throughout their dying (Johnson & Slaninka, 1999). The ritual of restoration: a clinical example To illustrate how rituals of restoration shape the communication between physician and patient, we have relied on a narrative written by physician Daniel Rayson (Rayson, 1999) about his care of a dying patient and extracted a dialogue from his description of their interaction. Lisa is a 26-year-old mother of a boy and girl, ages 2 and 4 years. She has an aggressive adenocarcinoma of undetermined origin that has spread to her pelvis, abdomen, and lungs. Although she had received radiation therapy in addition to two different combinations of chemotherapy, the therapies did not diminish her disease. Nevertheless, she remains optimistic. Lisa’s physician enters the examination room to assess her

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response to the third and latest treatment and is surprised to find, despite the seriousness of her disease, a ‘‘bubbly blond’’ woman. Patient:

You must be Doctor Dan. I’m Lisa. I hope you have some tricks up your sleeve, because I have a feeling things aren’t going as well as people are telling me.

Lisa’s opening remark suggests that she has previously received an optimistic prognosis that she is now tentatively questioning. With this statement, she invites her physician to help her to break the hold of the misleading interpretations of her illness. Physician: What do you mean? Patient: Well, my hip pain is worse, and these ‘‘lumpy-bumpies’’ are getting bigger. (The patient lifts her T-shirt to show the increased size of the purplish nodules, which indicates that her cancer is not responding to treatment.)

By speaking of her increasing hip pain and lifting her shirt to document that her body is changing in disturbing ways, she signals that she is aware of the discrepancy between the treating physicians’ words and the seemingly contradictory evidence she is experiencing. Her underlying plea ‘‘See me, look at these bumps, they are getting bigger!’’ represents the early stages of a lament through which she should be able to acknowledge to herself and to others that her life is radically changing. But the lament is the first element of the ritual of transformation—the acceptance of coming death—and her physician is determined to silence it through the distraction of ‘‘what can be done’’—the first element of a ritual of restoration. (Her physician takes a tape measure from his pocket and begins to measure the size of the nodules.)

The physician responds by taking out a ritual instrument (a tape measure) and performing a ritual act (gathering data by measuring the bumps) to start the process of determining what can be done. How will these bumps be interpreted? Lisa wonders if they mean that things are not ‘‘going as well as people say,’’ by which she likely means, ‘‘I’m not getting better, am I?’’ Patient:

You look like a tailor with that old measuring tape, not a doctor. Every time my lumpy-bumpies get measured, it reminds me of lining up my kids against the kitchen wall to see how tall they’re getting. I use a red crayon for Chelsea and a blue one for James. At least they’re growing faster than these things!

Here Lisa makes a touching reference to her children, relating their growing taller to the growth of her tumours. The growth of both her lumpy-bumpies and her children mark the progress of two intersecting realities that are of central

378 Gary E. Myers importance to her. The continuing growth of the tumour will shorten her time in the emerging lives of her young children. She wants to talk about this connection between tumours and children, but she needs help. Her physician will miss this opportunity, but she will provide him with another later in the dialogue. After determining that the cancer is progressing and that the therapy must be changed, the physician consults with senior colleagues. Privately, all are pessimistic about the success of further treatment, but in the course of their consultation, they realize that one drug remains untried.

We asked earlier how Lisa’s physician might interpret the increasing size of her bumps, for within a ritual of restoration, their increasing size means, ‘‘change the treatment.’’ However, rituals of transformation might suggest another meaning, one acknowledging that Lisa’s relationship with all she loves is changing and raising the question about how she can stay connected to her children’s future if she cannot be there to mark their growth with red and blue crayons. This spiritual and existential concern is at risk of not being heard or addressed by the physician’s dogged pursuit of the restoration ritual. The physician returns to the patient with a new sense of optimism, explains the details of the new drug’s administration, its potential side effects, and how they would attempt to prevent them.

A new untried drug! Tape measurements, IV drugs, medications for debilitating side effects, additional tests to evaluate the treatment outcome—all provide one enactment after another of the restoration ritual that will continue to interpret Lisa’s dying as a treatable illness—to the very end. Physician:

I hope that this new treatment will produce the result we have been looking for. Any questions? Patient: Let’s get on with it, Doctor Dan! Sounds good to me. Can I get it today?’’ Physician: [Yes.]

As the patient starts towards the chemotherapy unit, she laughs and says: Patient:

You know, my best girlfriend said the weirdest thing last week. She told me about a girl she knew who died of leukemia. This girl had a couple of kids, and she had written a bunch of stories for them to remember her by. My girlfriend said that I should do the same thing for my kids, but I don’t think I’m that far-gone, am I, Doctor Dan?

Lisa gives herself and her physician one more opportunity to break away from the limitations of the restoration ritual and to connect with her concern about the legacy that she can leave to her children. Physician:

[Stunned silence] No, Lisa, I don’t think you’re at that point. I’m hopeful that this new treatment will work and that you will be able to spend a lot more time with your kids.

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Hope remains riveted to the efficacy of treatment. The opportunity for Lisa to find hope in the life that she has already lived and how her life could symbolically continue to nurture and guide her children after her death seems to be lost. Patient:

That’s what I thought, Doctor Dan. Thanks. Now on to round three (3rd course of chemotherapy). Lisa died two weeks later.

Clearly, Lisa remains hopeful until the end that her physician will find a treatment to cure her or at least significantly extend the time that she has to spend with her children. She remains optimistic and treatment focused despite her disappointing response to the three previous courses of treatment. Her enduring hope for the success of treatment motivates her to attempt a fourth treatment during what turns out to be the final weeks of her life. Both physician and patient are locked into a ritual of restoration and its malignant optimism that interprets the signs that she is dying as only indications that it is time to try the next therapy. Limitations and risks associated with rituals of restoration Sadness, grief, anxiety, and despair are managed by ritualizing Lisa’s dying as a treatable illness. Optimism is maintained at the cost of human significance. Sadness, grief, anxiety, and despair strike us as painful feelings to be avoided when we consider them in isolation from their polar counterparts of joy, love, and hope. But, in fact, they rarely exist in isolation; they are the feelings that connect us with what is central to our lives. In Lisa’s case, they might connect her to her children— to the memory of their shared past, to the joy of what they can continue to share in the present, and to the hope for the future, which she can share with them through stories, poems, or taped messages she has left behind. Close examination of the dialogue reveals that the patient is dimly aware that it is time for her to shift her concerns from treatment to spiritual and existential concerns. Lisa seeks her physician’s help with this transformation by mentioning to him her friend’s suggestion that she write stories to leave with her children as part of her legacy. When she says, ‘‘but I don’t think I’m that far-gone, am I, Doctor Dan?’’ her physician is faced with a critical decision that will influence the quality of his patient’s end-of-life care. He can continue the ritual of restoration by reassuring her that she is not ‘‘that far gone’’ and renew her optimism with the promise of an untried therapy, or he can respond to her spiritual and existential concerns and tell her that it is time to write her stories or to consider other ways that she may want to share herself with her children after her death. A recent surge of books and articles expressing concern about the negative outcomes related to ineffective communication between physicians and their dying patients about prognosis and treatment options confirms that physician – patient dialogues like the one cited above are neither isolated nor infrequent (Christakis 1999; Larson & Tobin, 2000; Myers, 2002; Quill, 2000, Weeks et al., 1998; Wolfe et al., 2000). One notable study, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT)

380 Gary E. Myers (SUPPORT principal investigators, 1995), found that physicians of patients at a high risk of death within three months, failed to discuss prognosis with these patients adequately even when provided with the best prognostic data available and supported by nurses specially trained to facilitate communication between physicians and patients. This contributed to many patients’ continuing to receive aggressive high-tech, life-extending care in spite of their wishes to avoid such futile treatments at the end of life. Another study (Weeks et al., 1998) found that patients with advanced lung and colon cancer were more optimistic about their chances of surviving six months than their physicians’ objective prognoses warranted. This optimism is associated with patients choosing to undergo life-extending treatments that were usually ineffective. The study concludes that to achieve the goals of making care at the end of life consistent with patient values and [to mitigate] futile therapy, we may need to change what physicians tell patients about their prognoses and be sure that patients hear and understand what their physicians have said. (1998, p. 1714)

The recommendation that physicians change what they tell patients about their prognoses in order to improve patient care requires closer examination because it tends to oversimplify the problem. Physicians’ failure to shift from rituals of restoration to rituals of transformation cannot be adequately explained as a result of lack of skill, experience, or courage. Something more fundamental to the character of modern medicine is at play here. By distancing itself from its historic humanistic foundations in order to gain credibility in the modern scientific culture (Engel, 1977; Frank, 1995; Kleinman, 1988), medicine has lost the perspectives and the resources needed to care for patients when medicines and procedures are of no avail. Physicians, as the agents of this narrowly scientific brand of medicine, are deeply influenced by the limits of the modern medical paradigm and, as a result, are prone to convert the nonmedical spiritual and existential needs of patients into medical needs that can be addressed by the resources now available to medicine. Therefore, helping physicians to shift from rituals of restoration to rituals of transformation at the appropriate time in a patient’s care must go beyond teaching physicians better ways to give bad news. Although skill enhancement is a necessary element in helping physicians to correct the practice of using prognosis and treatment to distract their patients from the reality that they are dying, it is not sufficient. More fundamental changes need to occur in the attitudes, assumptions, and paradigms of medicine that, in the end, determine whether or not new information and new skills actually change physicians’ practice of end-of-life care. This point is convincingly made by the SUPPORT study (1995), that demonstrated that even when interventions that provided resources and skills, specifically designed to facilitate timely discussions about prognosis, treatment, and DNR decisions were made available to physicians, they had no effect on their end-of-life care practices. Especially germane to this discussion is the finding that the interventions had almost no

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effect on the frequency with which physicians discussed their prognosis with patients. In the control group, with no intervention, only 39% of patients report having a discussion about their prognosis with their physician. In the experimental group, with the interventions, there was no appreciable increase in patients reporting such discussions (41%). This study concludes that current physician practices are so ingrained that change, will require reexamination of our individual and collective commitment to these goals [better physician-patient communication and treatment decisions], more creative efforts at shaping the treatment process, and, perhaps more proactive and forceful attempts at change (1995, p. 1597)

Clearly, in addition to providing skills and informational support, we must examine and critique the entrenched paradigms and rituals of practice that resist utilizing new skills and relevant information and open medical practice to the consideration of different paradigms and rituals. Rituals of transformation: meeting human needs It appears that despite the modern separation of shamanism, religious healing, and medicine, there are critical points in the patient’s life that draw these dissimilar healing modalities together into an uneasy amalgam. In order to provide comfort, physicians expropriate prognosis and curative treatments from their normal scientific function to construct a ritual that reframes the terrifying and helpless experience of dying into the more hopeful and manageable experience of fighting against a serious but potentially curable disease (Bauman, 1992; Christakis, 1999; Macleod & Carter, 1999). Patients facing the end of life need hope, meaning, and purpose to sustain them, and medicine strains to meet their need. These recast medical practices are what sociologist Mircea Eliade (1959) refers to as ‘‘degenerated rituals.’’ Such rituals, according Eliade, are vestiges of the practices used by human beings in primordial times to find solutions to existential crises created by irreversible loss. In their modern rendition, however, they lack grounding in a spiritual worldview that can envision participation in a reality that is more general and universal than one’s own experience of loss as an isolated individual. Although benign in intent, degenerated rituals can significantly diminish the well-being of patients approaching the end of life. They are attractive because they initially satisfy the emergent psychological needs of people who are overwhelmed by an existential crisis but, in the end, the rituals fail to help them to transcend the existential givens of their individual situation. Since the degenerated rituals are not based on values more universal and enduring than the ‘‘struggle against death,’’ once the struggle is over and it is clear that death cannot be defeated, patients like Lisa who have not become reoriented to a universal context of meaning are at risk of becoming isolated within their own individual experience of dying. Meaning and hope become the central concern for both patients and physicians when they face the end of life together. Patients need hope in order to carry on,

382 Gary E. Myers and physicians feel they must provide hope, both out of a concern for the welfare of their patients and as a culturally determined response to disguise the limitations of medicine (Bauman, 1992). If the foundation of meaning and hope for physician and patient had best not be constructed out of a medical paradigm and its rituals of restoration, in what narrative context can it be founded? Both the religious traditions and ritual healing practices of traditional, indigenous communities provide historical sources for cultural rituals that symbolically connect personal occasions of suffering with larger universalizing contexts of meaning. In many cases, modern secular rituals retain the structure of religious rituals, but substitute the content of the ritual with nonreligious symbols that represent whatever the individual or community considers as being of enduring significance (Rubin, 1986). Certain Psalms, such as Psalms 102, represent a well-known Western liturgical form of a transformation ritual that illustrates its basic structure. According to Brueggeman (1993), the Psalms both emerge from and shape the paradigmatic human experience of initially being oriented in the status quo of ordinary life, then being disoriented by chaos stemming from a radical life change, such as dying, or the loss of national identity, and finally discovering a new orientation to life through transformation. We identify in Psalm 102 three basic elements of the structure of transformation rituals that assist the afflicted with their progression from the full acknowledgment and expression of their condition to a reorientation to life in which they can experience their losses within a context of the enduring significance of their life. These elements are the (1) expression of individual loss and suffering (lament), (2) the inclusion of the individual’s suffering in a larger transforming context (transformation), and (3) the expression of ambivalence towards loss and transformation (ambivalence). The lament is illustrated in verses 1 – 6. 1 The prayer of one afflicted and wasting away whose anguish is poured out before the Lord. 2 Lord, hear my prayer; let my cry come to you. 3 Do not hide your face from me now that I am in distress. Turn your ear to me; when I call, answer me quickly. 4 For my days vanish like smoke; my bones burn away as in a furnace. 5 I am withered, dried up like grass, too wasted to eat my food. 6 From my loud groaning I become just skin and bones. (New American Bible) The lament has two parts: the sufferer’s public complaint, in verses 1, 4, and 5, and the sufferer’s demand that God and community hear the complaint and respond, in verse 3. In the complaint, the sufferer anguishes over the loss of body integrity and the approaching end of life. Vivid and compelling language is used to give a full and unbridled account of the experience of dying. But the sufferer is not content with simply expressing her suffering; she demands that others bear witness to it and to answer her. Bruggeman (1993)

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points out that such raw, unadorned expressions of suffering have fallen into liturgical limbo in modern religious communities because they so powerfully confront us with the transience and vulnerability of life that many prefer to deny. We find that the same is true of many dialogues within the medical community, as illustrated by the polite dialogue between Lisa and her physician, who repress the lament. The second element, transformation, introduces a vision of the future through which the dying can symbolically participate in the continuity of life that unites past, present, and future. Verses 19 – 23 introduce imagery that connects the dying individual with subsequent generations of believers, and the compassionate acts of God. 19 Let this be written for the next generation, for a people not yet born, that they may praise the Lord: 20 The Lord looked down from the holy heights, viewed the earth from heaven, 21 To attend to the groaning of the prisoners, to release those doomed to die. 22 Then the Lord’s name will be declared on Zion, the praise of God in Jerusalem, 23 When all peoples and kingdoms gather to worship the Lord. Because life in the world with family and friends is held so dear, it is difficult to accept that one must let go of it and become reoriented to life as symbolic participation in the life of God or in the lives of future generations of family and community. Verses 24 – 25 express the sufferer’s ambivalence as she struggles to come to terms with loss and transformation. 24 God has shattered my strength in mid-course, has cut short my days. 25 I plead, O my God, do not take me in the midst of my days. Your years last through all generations. Verses 26 – 29 shifts the focus once again from the individual’s experience of dying to an enduring reality in which the dying person participates, namely, life in the originative and enduring life of God. 26 Of old you laid the earth’s foundations; the heavens are the work of your hands. 27 They perish, but you remain; they all wear out like a garment; Like clothing you change them and they are changed, 28 But you are the same, your years have no end. 29 May the children of your servants live on; may their descendants live in your presence. In Lisa’s case, it does not appear from the dialogue that she will be able to lament her dying until perhaps the very end of life, which may make it difficult for her to

384 Gary E. Myers call upon her religious resources, if they exist, or to enter into a nonreligious rituals of transformation that could give expression to and connect her with the enduring contributions that she has made and will continue to make to the lives of her children. It is important to note that the benefits of the ritual form and strategy expressed in the Psalms are not limited to the religious. We can benefit from the ritual strategy of the Psalms without regard to their religious content. The key elements of a transformative ritual strategy are the open and shared expression of one’s anguish and the receiving of support from caregivers, including the acceptance of ambivalence, until one discovers a source of new hope through reorientation. This ritual pattern need not have a religious character, but it must help the sufferer to symbolically transcend the limitations of her individual situation. Robert Jay Lifton (1983) describes this process as establishing ‘‘symbolic immortality,’’ a process through which one comes to identify less with one’s everyday possessions and experiences, and more with values, beliefs, commitments, or personal creations that endure beyond one’s individual existence. Guidelines for physicians and the medical community What might constitute a ritual of transformation formulated for use in the medical context? The basic structure of rituals of transformation, as found in certain psalms, such as Psalm 102, suggests guidelines to help physicians modify their approach to end-of-life care, especially in their discussions with patients about prognosis and treatment. Physicians must create an accepting emotional space for the patient’s lament by compassionately communicating the truth to their patients about their condition and then being willing to endure the discomfort that may follow. This includes curbing the temptation to use the ambiguities of prognostication or premature discussions about available treatments to rescue both self and patient from what can often be an overwhelming experience of anxiety that begs for relief. Patients’ reactions to bad news will differ according to personality, life circumstances, and prognosis. Some may be shocked into silence, others may remain calm and ask for additional information, and still others may panic. Whatever the case, after giving bad news, physicians should support their patients by sitting quietly with them as they attempt to grasp the reality that they have a terminal disease, by being as fully present with them as possible, and by allowing them to initiate conversation when they are ready. The environment that physicians create should be one that confirms for their patients the reality that they have received news that has profoundly changed their lives. In Lisa’s case, for example, when she asks, ‘‘Doctor, I am not that bad off, am I?’’ we recommend that her physician resist the impulse to reassure or to refocus her attention on a new therapy that distracts her from coming to terms with her own death and the implications that this will have for her and her family. Instead, we suggest that her physician support her in the midst of her distress first by remaining silent while attentively listening to her until she provides an opening to

Ritual strategies


respond. At this juncture, the physician might say something like, ‘‘I know that this is overwhelming for you,’’ and then listen attentively to what follows. When the intensity of the patient’s lament lessens, the physician might express his empathy by giving her feedback that shows that he understands her fears of losing her relationship with her children and then ask at an appropriate moment what she wants to do with the time that remains to her. Having created a space for Lisa’s lament, she may let go of her focus on the new therapy and its promise of restoration and refocus instead on what is actually happening in her life. The lament makes clear to both her and others that the status quo cannot be restored. It is what allows her to move ahead and raise the question, ‘‘From whence comes my hope?’’ If the lament occurs, it may enable the patient to acknowledge that her relationship to all that she loves is changing and provide her with an opportunity to find a new orientation to her life, her children, and possibly to her spiritual centre. Such a reorientation begins the second movement of rituals of transformation and parallels the declaration in the Psalm 102 that in spite of losing all that is dear, the afflicted one acknowledges her connection with the continuity of the generations and with God. Through a similar reorientation, Lisa might have transformed her treatment-centered life and spent her remaining time to grieve her passing and to allow her grief to connect her with the life and love that she has given to and shared with her children, as well as make provision for contributing something of her to their future. These simple actions by the physician make a statement to the patient that even though she is facing death, her physician will not abandon her or lose hope that she will find the resources she needs to remain fully alive as she faces the end of life. Unfortunately it is very late in the course of Lisa’s dying to have this conversation, so she has little time to work through her emotions and to establish her priorities for living the life that is still available to her. It is understandable that one of the first responses patients may have on learning their diagnosis or that their treatment is not working is, ‘‘Doctor, I am not that bad off, am I?’’ This poses a daunting challenge to physicians. Naturally, most patients want to avoid death if possible and will want information about treatment. When patients ask if a cure is possible, they are asking the physician for information that will help them to know, at least in general, what to expect in the weeks and months ahead. They need this information in order to determine how to orient themselves toward the future. If physicians offer an unwarranted optimistic prognosis, thus opening the door for patients to assume that the physician thinks a cure is possible, the effect may be the taking back or blunting of the implications of the diagnosis and may encourage patients to live into the future as if a cure were possible or even probable. Rituals of transformation begin with the conscious recognition by patient and physician that something crucial has been lost or irrevocably changed, and they are sustained by the continuing shared awareness of the loss by physician, family, and community, who are willing to wait expectantly for the transformation of hope and meaning to occur. At this point, the most helpful physician interventions are to

386 Gary E. Myers give patients their best prognoses (if patients want to hear it), to inform them about the probable outcomes of available treatments, and to remain emotionally present with them while they react to this information. Some readers may be concerned that the complexity of the foregoing discussion may make its findings impractical for use in clinical practice. The complexity, however, simply provides conceptual support for the idea that there is a better way to sustain patients’ hope at the end of life than reframing it as a treatable illness and points the way to an alternative approach. Physicians, however, need not consider the complexity of this discussion in order to apply its insights. Simply put, the discussion provides a rationale for providing physicians with training that can help them to resist the tendency to offer hope to terminally ill patients by reframing their dying as a treatable illness.

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LARSON, D.G. & TOBIN D.R. (2000). End-of-life conversations: Evolving practice and theory. Journal of the American Medical Association, 284(12), 1573 – 1578. LIFTON, R.J. (1983). The broken connection: On death and the continuity of life. New York: Basic Books. MACKILLOP, W.J., STEWART, W.E., GINSBURG, A.D. & STEWART, S.S. (1988). Cancer patients’ perceptions of their disease and its treatment. British Journal of Cancer, 58, 355 – 358. MACLEOD, R. & CARTER, H. (1999). Health professionals’ perceptions of hope: Understanding its significance in the care of people who are dying. Mortality, 4(3), 309 – 318. MARRONE, R. (1999). Dying, mourning, and spirituality: A psychological perspective. Death Studies, 23(6), 495 – 520. MURPHY, D.J., BURROWS, D., SANTILLI, S., KEMP, A.W., TENNER, S., KRELING, B. & TENO, J. (1994). The influence of the probability of survival on patients’ preferences regarding cardiopulmonary resuscitation. New England Journal of Medicine, 330, 545 – 549. MYERS, G.E. (2002). Can illness narratives contribute to the delay of hospice admission? Am J Hosp Palliat Care, 19(5), 325 – 330. QUILL, T.E. (2000). Initiating end-of-life discussions with seriously ill patients: Addressing the ‘‘elephant in the room’’. Journal of the American Medical Association, 284(19), 2502 – 2507. RAYSON, D. (1999). Lisa’s stories. Journal of the American Medical Association, 282(17), 1605 – 1606. RUBIN, N. (1986). Death customs in a non-religious kibbutz: The use of sacred symbols in a secular society. Journal for the Scientific Study of Religion, 25(3), 292 – 204. SUPPORT PRINCIPAL INVESTIGATORS (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT). Journal of the American Medical Association, 274(20), 1591 – 1598. THE, A.M., HAK, T., KOETER, G. & VAN DER WAL, G. (2000). Collusion in doctor-patient communication about imminent death: An ethnographic study. British Medical Journal (Clinical Research edn.), 321, 1376 – 1381. TURNER, V. (1967). The forest of symbols: Aspects of Ndembu Ritual. Ithaca, New York: Cornell University Press. VAN GENNEP, A. (1960). The rites of passage. Chicago: Chicago University Press. WEEKS, J.C., COOK, F.E., O’DAY, S.J., PETERSON, L.M., WENGER, N., REDING, D., HARRELL, F.E., KUSSIN, P., DAWSON, N.V., CONNERS, A.F., LYNN, J. & PHILLIPS, R.S. (1998). Relationship between cancer patients’ predictions of prognosis and their treatment preferences. Journal of the American Medical Association, 279(21), 1709 – 1714. WOLFE, J., KLAR, N., HOLCOMBE E.G., DUNCAN, J., SALEM-SCHATZ, S., EMANUEL, E.J. & WEEKS, J.G. (2000). Understanding of prognosis among parents of children who died of cancer. Journal of the American Medical Association, 284(19), 2469 – 2475. Biographical Note Gary E. Myers received his Ph.D. in Theology and Personality Studies from Emory University. He an Assistant Professor in the Medical Humanities and Psychiatry departments at the Southern Illinois University School of Medicine in Springfield, Illinois and the Director of Programs in Psychosocial Care, Religion and Spirituality in Psychiatric Practice and Spiritual and Cultural Competence in Family Medicine. Dr. Myers is an ordained United Methodist minister and a Diplomate in the American Association of Pastoral Counselors.

Transformation or Restoration  

Ritual care of the dying is an important aspect of end-of-life care that can help to comfort and support patients as they come to terms with...

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