Restoration or Transformation? Choosing Ritual Strategies for End-of-Life Care
Abbreviated Title: Ritual Strategies
Gary E. Myers, Ph.D.
Southern Illinois University School of Medicine
913 N. Rutledge Street
P.O. Box 19603
Springfield, Illinois 62794-9603
Send feedback to:
Gary E. Myers, Ph.D.
913 N. Rutledge Street
P.O. Box 19603
Springfield, Illinois 62794-9603
Tel: 217-545-4261
Fax: 217-545-7903
Email: gmyers@siumed.edu
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.
Restoration or Transformation? Choosing Ritual Strategies for End-of-Life Care
Rituals are patterned repetitive behaviors that organize and give meaning to
human experience at the psychological, social, and cultural levels (Durkheim,
1972; Geertz, 1973; 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
study 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.
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 to meaningfully 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 analyze 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 has made 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
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, Fugh-Berman,
& Gold, 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).
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.). Traditional
healers interpret physical signs, just as physicians interpret physical signs
and test findings.
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 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-of-life care (Davidson, Degner, & Morgan, 1995; Degner, Kristjanson,
& Bowman, 1997; Kutner, Steiner, Corbett, Jahnigen, & Barton, 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
unfavorable 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,
Stewart, Ginsburg, & Stewart, 1988; The, Hak, Koeter, & van der Wal,
2000), which encourages them to undergo treatments that more objective medical
opinions would consider futile (Frankl, Oye, & Ballamy, 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 rituals 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. 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 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 tumors. The growth of both her lumpy-bumpies and
her children mark the progress of two intersecting realities that are of central
importance to her. The continuing growth of the tumor will shorten her time
in the emerging lives of her young children. She wants to talk about this connection
between tumors 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.
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.
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 to 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) (SUPPORT principal
investigators, 1995), found that physicians of patients at a high risk of death
within a few months, failed, even when provided with the best prognostic data
available and supported by nurses specially trained to facilitate communication
between physicians and patients, to adequately discuss prognosis with their
dying 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 hears 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 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 that 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, 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 Psalms102, 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 Psalms 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 loses 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] 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 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 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 Psalms 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 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, etc., 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 center.
Such a reorientation begins the second movement of rituals of transformation
and parallels the declaration in the Psalms 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 natural 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 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.
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 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 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.
References
ADAMS, D., FUGH-BERMAN, A, & GOLD, R. (1999). Marketing menopause [Radio
Interview]. (Available from National Radio Project, 1714 Franklyn, #100-251,
Oakland, CA 94612.)
BAUMAN, Z. (1992). Mortality, immortality and other life strategies. Stanford,
CA: Stanford University Press.
BERGER, G. (1999). Menopause and culture. London: Pluto Press.
BRUEGGEMAN, W. (1993). Praying the Psalms. Winona, MN: Saint Mary's Press.
CHRISTAKIS, N. A. (1999). Death foretold: Prophecy and prognosis in medical
care. Chicago: University of Chicago Press.
DAVIDSON, B. J., DEGNER, L. F., & MORGAN, T. R. (1995). Information and
decision-making preferences of men with prostrate cancer. Oncology Nursing Forum,
22, 1401-1408.
DEGNER, L. F., KRISTJANSON, L., & BOWMAN, P. L. (1997). Information needs
and decisional preferences in women with breast cancer. Journal of the American
Medical Association, 277, 1485-1492.
EDINGER, R. N., & SCHAPIRA, D. V. (1984). Cancer patients' insight into
their treatment, prognosis, and unconventional therapies. Cancer, 53, 2736-2740.
ELIADE, M. (1959). The sacred and the profane: The nature of religion (W. R.
Trask, Trans.). New York: Harcourt, Brace & World. (Original work published
1907)
ELKS, M. L. (1997, November 21). Healing and the emotions. The Chronicle of
Higher Education.
ENGEL, G. (1977) The need for a new medical model: A challenge for biomedicine.
Science, 196.4268, 129-36.
FOX, R. C. (1988). The human condition of health professional. In R. C. FOX
(ed.), Essays in medical sociology: Journey into the field. New Brunswick, NJ:
Transaction Books.
FRANK, A.W. (1995). The wounded storyteller. Chicago: University of Chicago
Press.
FRANKL, D., OYE, R. K., & BALLAMY, P.E. (1989). Attitudes of hospitalized
patients toward life support: A survey of 200 medical inpatients. American Journal
of Medicine, 86 (6), 645-648.
Geertz, C. (1973). The interpretation of cultures. New York: Basic Books.
HANSON, L. C., DANIS, M., & GARRIS, J. (1997). What is wrong with end-of-life
care? Opinions of bereaved family members. Journal of the American Geriatrics
Society, 45, 1339-1344.
JOHNSON, C. B., & SLANINKA, S. C. (1999). Barriers to accessing hospice
services before a late terminal stage. Death Studies, 23, 225-238.
KATZ, R. (1982). Boiling energy: Community healing among the Kalahari Kung.
Cambridge, MA: Harvard University Press.
KLEINMAN, A. (1988). The illness narratives. New York: Basic Books.
KUTNER, J. S., STEINER, J. F., CORBETT, K. K., JAHNIGEN, D. W., & BARTON,
P. L. (1999). Information needs in terminal illness. Social Science and Medicine,
48, 1341-1352.
LAMONT, E. B., & CHRISTAKIS, N. A. (2001). Prognostic disclosure to patients
with cancer near the end of life. Annals of Internal Medicine, 134 (12), 1097-1104.
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, J. L. (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' perception 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): 325-30.
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 ed.), 321,1376-1381.
Turner, V. 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.