The core premise of this article is that dying is a spiritual experience. In many respects, this is the shared premise of the hospice interdisciplinary team. Sometimes, the spiritual aspects of dying are affirmed or implied in concert with other aims of end-of-life care. For instance, Evans and Hallett1 discuss 3 “key themes” they have identified among “terminally ill persons”: comfort and relief, peace and ease, and spirituality and meaning. Although they are speaking to nurses, they have identified, for all end-of-life clinicians, 3 aspects of the dying person's experience that essentially require spiritual care. This is because “comfort” and “peace” have their spiritual components, along with the search for meaning.
Moreover, Evans and Hallett1 provide a conceptual framework for understanding the embodiment of spirituality. They applied a “phenomenological concept of corporeality (the lived experience of the body)” that enabled them to connect their key themes with “ideas of the disobedient, vulnerable, diseased and the betraying body.”1(p743) This makes their research and their point of view appropriate for this article and for physical therapists (PTs) providing end-of-life care.
The strength of Evans and Hallett's1 research is that their observations do not encourage crossing or obscuring professional boundaries. Yet, they do reinforce this obvious conclusion: if dying is a spiritual experience, not just a physical one, then all those who provide care for the dying would do well to be aware of the spiritual aspects of dying so that they might provide the spiritual care appropriate to their own profession.
PTs may already be providing some components of spiritual care during their usual physical therapy interventions but may not be aware of the value of this spiritual care. Therefore, enhancing the awareness of the needs for spiritual care in individuals experiencing the dying process assists the PT in being more proactive in addressing the spirituality of those persons dying from cancer. These are, above all, “reflections”—meaning what is presented here is far from exhaustive; these thoughts are merely suggestive of a scope of how to integrate spiritual awareness into their practice.
There are aspects of the physical therapy of the dying that touch more than the physicality of the dying. By touching the body of the dying, the PT touches, and is in touch with, the “spirit” of the dying. While there may be more, Evan and Hallett's1 research confirms that at least 3 resultant factors are comfort, peace, and meaning.
SPIRITUALITY AND THE BODY: DEFINITIONS OF TERMS
Although there are a variety of ways that spirituality has been defined, most affirm aspects of the human condition that are “deeper” and that transcend one's emotions. For the purposes of this article, these definitions can be summarized by a well-known saying of the German poet Rainer Maria Rilke: “What goes on in your innermost being is worthy of your whole love; you must somehow keep working at it and not lose too much time or too much courage....” The experience of dying is largely an inwardly directed “spiraling” of one's attention. Much of what is concerning the dying exceeds their ability to articulate. What the hospice professionals provide is precisely that encouragement to continue to give their “whole love” to what is going on in their “innermost being.” This is essentially the spiritual purpose of hospice care. The PT participates in this spiritual aspect of end-of-life care.
To extend the concept of corporeity in Evans and Hallett,1 it is useful to employ the phenomenology of Gabriel Marcel.2 He noted that we tend to talk about the body in 2 ways: as “the body I have” and as “the body I am.” This means that there are ways we think of the body as object and ways that we think of the body as subject. These 2 ways of thinking are distinguishable but inseparable. What occurs to “the body I have” has an impact upon “the body I am.” In the everyday experience of the “lived body,” there is what one could call a “dynamic tension” in this duality. Most often, when that tension is maintained, there is an equilibrium or balance. However, illness, or even just an awareness of one's mortality, brings about an imbalance. These imbalances are experienced as spiritual injuries and held in the body as spiritual wounds.
In Rilke's terms, what is going on in our “innermost being” entails this attention to our woundedness. As we die, beyond the feelings that we have are our concerns about who we are. In hospice, we say, “A person may or may not have a religion, but everyone is spiritual.” The PT's contact with “the body I have” simultaneously touches “the body I am,” thus influencing the spiritual life of the person dying from cancer.
Spiritual Wounds and the Body
Spiritual injuries and wounds transcend our emotional life. The impact upon the body is more significant. One can work through the feelings one has, but one's spiritual injuries are a deeper wounding of the self; the meaning of them exceeds the event of their occurrence and shapes one's identity. The question, “Who am I?” is a search for spiritual meaning.
For example, before coming to hospice, probably the single, global spiritual issue people have been facing has to do with recovering a sense of themselves as persons, retrieving it from having become patients. The processes of the systems of medical care are reductive. In the pursuit of cure, the regard shifts from person to patient to disease to cells and the response of those cells to treatments.3 In his book, At the Will of the Body, Arthur Frank4 speaks to how the medical focus on the cure of the disease shifts one's sense of self. He says: “Thus in disease talk my body, my ongoing experience of being alive, becomes the body, an object to be measured and thus objectified. ... [In] using medical expressions ill persons lose themselves.”4
For this reason, what people with cancer might most hope for from hospice care is a restoration of their personhood. Instead of being “cancer patients,” they want to be seen as being people, albeit people with cancer. Unfortunately, because of the medical model of most hospice care, they continue to be seen as “patients.” Therefore, one way that PTs can bring a spiritual intention to their care is simply by supporting this retrieval: this recovery of personhood by the people with cancer who come under their care.
In phenomenological terms, when the body as object takes priority over the body as subject, depersonalization occurs. Moreover, when the body I have dominates the body I am, one becomes “disembodied.”
This leads to another spiritual aspect of hospice care that PTs can support, one that radiates from restoring the patient's personhood to participating in the hospice maxim that “the patient and the family is the unit of care.” When the PT teaches the family or other members of the support system of the person with cancer how to care for their loved one by massaging or safely transferring the patient, the PT is focusing their services on the entire “unit of care.” This perspective ratifies the maxim: when a member of the family receives a cancer diagnosis, the whole family receives a cancer diagnosis. Together this means: when someone comes onto hospice care, the whole family comes under the care of hospice. The hospice team honors whatever way persons dying from cancer define their family and support system, thereby contributing to the recovery of their personhood.
To appreciate the spiritual dynamics functioning in the interconnections among family members may entail an awareness that families are systems,5 that is, their own multicell organisms. Contributing to the spiritual care of the person with cancer extends to maintaining the context of care around the person with cancer who is dying.
What makes this spiritual care is that this perspective and this practice address 2 spiritual challenges people dying from cancer often face. One is intimacy: how do I let others be close to me? The other is isolation: why do I feel so singled out and so alone? Reinforcing the intimacy of the family functioning can mitigate the isolation people who are dying often feel.
Issues of intimacy and isolation are 2 spiritual challenges that arise in many ways for those who are dying of cancer. They are the existential evidence of the betrayal of the body.
MORTALITY, ISOLATION, AND INTIMACY
By the time people with cancer come onto hospice, they have experienced a history of spiritual injuries. First, they have been told that, in order to gain admission, they have been given a medical prognosis of 6 months—or less. Facing the reality of their mortality is likely what they have avoided.
In fact, this avoidance may have been the primary motivation of their search for a cure. In most people, this search has structured their lives for a considerable period of time, yet it has effectively been ended and been replaced by what is now to be a search for care. It is commonly put to them that they are supposed to find this consoling, for care is what they are told to find on hospice. However, whether they find this to be a consolation may or may not be true. What they know instead are disappointment, discouragement, and, perhaps, despair. These are spiritual injuries, for their meaning to the persons transcends their emotional effect: they are aspects of the isolation they are experiencing.
Moreover, realizing that they are mortal means that there are consequences to their finitude. They realize that this is that to which their life has come. From this dawns the awareness that they are to be dependent upon others for end-of-life care. As they assess on whom they can and must depend, spiritual issues of intimacy arise. Because of their history of relational losses, many people with cancer who are admitted to hospice are faced with the need to rely upon people who may not have been their preferred choice. To be comfortable with those on whom they must now depend is, in itself, a reminder of the myriad of spiritual injuries they have suffered in the course of their lives.
Because these injuries result in invisible spiritual wounds, none of this may be apparent to anyone on the hospice team. Nonetheless, all spiritual wounds are invitations to everyone on the hospice team for attention, for what transcends the search for a cure and the acceptance of care is the hope for healing.
THE BETRAYAL OF THE BODY AS CORE SPIRITUAL WOUND
Phenomenological Aspects of the Betrayal of the Body
Evans and Hallett1 noted that our “lived experience of the body” includes that of the body's capacity for betrayal. The betrayal by and of the body is the core spiritual injury common among persons with cancer; they come to hospice with that spiritual wound. No betrayal is quite like that of the betrayal of the body, for there is no other relationship that is as foundational to our sense of ourselves. Our first and most primary relationship is with our body. All of our other relationships are external. This internal relationship influences all our other relationships. In other words, our relationship with our body is what is always going on in our “innermost being.”
The arrival of the disease of cancer and its consequent illnesses tests this relationship with our body. On the one hand, the realization that our body has betrayed us can come suddenly. At the moment of diagnosis, one experiences a sense of how could this happen to me? This is the initial experience of betrayal. With it comes feelings of umbrage, surprise, and disappointment. When told we have a cancer growing in us, we feel invaded by a foreign body, a “body” not our own. The body we thought we knew so well suddenly has become a stranger to us. A behavior on the part of our body beyond our ability to control it, beyond our will, renders us not quite knowing what to do. That sense of helplessness is our awareness of being betrayed by our body.
These first glimmers of betrayal by our bodies come in the form of our body as object: suddenly the body I have is threatening the body I am, because it has aligned itself with a body I am not, namely, the foreign “body” of cancer.
After diagnosis, our sense that our body is betraying us can grow gradually. During treatment, we are vulnerable to many losses. Some are quite identifiable losses that persons with cancer endure before coming to hospice: hair, appetite, limbs, and/or body parts, for example. Many of the losses that are experienced during treatment amount to disfigurations, meaning, the body I have has taken on a different shape. We can become unrecognizable to ourselves. The betrayal of the body I have, our body image, has an impact on the body I am, our body identity.
This is less a matter of how we feel about ourselves than it is a matter of how the body I have shapes perceptions, contours perspectives, and influences how we move about in the world. The body I am exists in the world structured by the body I have. Having cancer in itself can lead us to experience ourselves as “disembodied.”
Between ourselves and our bodies, there is, or must be, a relationship akin to what Erik Erikson6 called “basic trust.” Because the body I have is also the body I am, we must have a relationship of “basic” trust with our bodies. Our basic trust of our bodies is reflected in whether we find our bodies reliable—or not. Our confidence in the reliability of our bodies is the lived experience of a balance in our corporeity; unreliability, as an impairment of our basic trust in our bodies, reveals an imbalance.
Illness challenges whether or not we find our bodies to be reliable. Most illnesses come and go—or in terms of chronic conditions, come and stay—within a framework of reliable meaning. When we have a cold, we rely on the body's immune system to respond and bring us back toward some metabolic balance we would call health. When we have an autoimmune disorder such as multiple sclerosis, we find that the basic reliability of our body has become a constant challenge to (re-)establish. Yet, we strive to maintain some level of basic trust, even when that may vary from day to day. “Homeostasis” is one term for this basic trust of the reliability of our lived body, restored or maintained.
Along with the chronic illness of cancer has come a level of chronic anxiety. Keeping calm is its own spiritual challenge. Meanwhile, what we are daily facing in our relationship with our body often goes without recognition and validation by others. To turn again to Arthur Frank, “illness,” he says, “is the experience of living through the disease. If disease talk measures the body, illness talk tells of the fear and frustration of being inside a body that is breaking down.”4 In terms of the having/being duality, medical talk is about the disease we have, but what we want to talk about is what we are experiencing. “I know I am supposed to ask only about the disease,” Frank says, “but what I feel is the illness.” The result: “The gap between what I feel and what I feel allowed to say widens...”4(p14) Depersonalization is one result of this ever-widening gap between the body as object and the body as subject. This gap is one way to describe the spiritual wound resulting from the betrayal of our body.
The Body, Shame, Dignity, and Stigma
Other ways the betrayal of the body is evident are in the spiritual injuries of shame and shame-related issues of dignity impairment and social stigmatization. All 3 can manifest in both the dying person and the other members of the unit of care.
Shame. The first evidence of the shame of the betrayal of the body comes when we realize that our body has not protected us from cancer. One form of the shame of cancer pertains to this experience of being “exposed,” vulnerable when one relied upon one's body to be invulnerable.
This experience reflects a classic discussion of shame by Erikson (emphasis supplied by the author):
Shame is an emotion insufficiently studied, because in our civilization it is so early and easily absorbed by guilt. Shame supposes that one is completely exposed and conscious of being looked at: in one word, self-conscious. One is visible and not ready to be visible.... Shame is early expressed in an impulse to bury one's face, or to sink, right then and there, into the ground.6(p252)
Another way that shame about our body's betrayal occurs is described by Susan Roos.7 She references of this comment by Frederick Turner: “Shame, fundamentally, does not come from a lack of ability to have, or possess; it comes from the consciousness of a lack of ability to give.” Because we harbor “a suspicion that our own gift to society was not acceptable and thus our exclusion from the human exchange system may, shamefully, be justified,” the result, Turner says, is “the shame of Cain.”8 This is insightful as it speaks to the helplessness people with cancer feel as they are dying. Their “being barred from the human exchange system,” as Roos7 underscores, means an absence of mutuality and results in a lack of reciprocity.
These dual aspects of shame stemming from the betrayal of the body present PTs with opportunities for a spiritual aim of care peculiar to their profession. The PTs should be aware both of how persons with cancer are vulnerable and prone to feeling exposed. And to their sense of helplessness as their dependency may result in exclusion from the exchange system of their usual relational life. These, again, are aspects of the related spiritual wounds of intimacy and isolation.
Jean Shinoda Bolen described the importance of promoting “participating in a prayer without words” with the dying, for “healing touch is also prayer.”9 She stated: “When the intent is to heal and help by touch, the practitioner enters an I-Thou relationship with the patient, and is herself nourished by the energy she draws from herself by centering.”9 That is, there is an intimacy in this intention that also has about it an “exchange,” thus transcending isolation with a reciprocity that affirms both persons.
Dignity. The experience of being depersonalized is an affront to human dignity and a spiritual injury. To address the resulting spiritual wound, the PT may bring a spiritual intention that extends the reciprocity of the therapeutic intervention to an affirmation of mutuality. For when human dignity is in jeopardy for one, it is in jeopardy for all. To be with people whose dignity has been impaired is to experience a form of “borrowed” shame. This would be the shame that arises from one's participation in the medical system that perpetrates depersonalization.
To counter this, one can extend Bolen's perspective: since shame is a spiritual wound, it is best ameliorated by the spiritual care of the PT for himself or herself. The mutuality of this spiritual care is rooted in not being “ashamed of shame.” Evelyn and James Whitehead described that a “healthy” shame “names the inner attunement we bring to our encounters with other people”10 At stake is the “dignity we recognize [in] the value of our embodied selves.”10(p116) Dignity relates both to our self-respect and to our ability to protect ourselves once again. In the therapeutic encounter, the dignity of the person with cancer and the dignity of the PT is at stake. The PT will do well to be sensitive to this dilemma of the dying, and in his or her spiritual care be aiming at restoring the personal integrity and dignity of the other while maintaining his or her own.
Stigma. The shame of cancer leads to the stigma of cancer: the social regard connects with the internal helplessness and the inability to prevent the “exposure” of having cancer—both for the individual and for their family. In this way, “having cancer” leads to the fear of “being cancerous.” That is, people respond as if cancer were contagious. This results in yet another aspect of the spiritual injury of isolation: the experience of being abandoned by others in one's hour of need.
To discuss the stigma of cancer, we can refer once more to Frank, who states: “Society defines stigmas...”4(p96) As a consequence, it is up to the person with cancer to respond, as Frank suggests: “But what matters most, no matter what you call yourself or are called, is that you remain foremost a person, actively living your life.”4 Yet, “Resisting stigmatization requires more than individual will.” Frank notes this interaction: “Society is obsessed with ‘health,’ but it prefers to keep ill persons on its margins, making them as invisible as possible. When people are stigmatized, they hide themselves.” Erikson6 concurs with this principle that there is this collapsing response to a stigmatizing social regard. Frank concludes:
Society, not the disease itself, makes cancer as dreaded as it is. A culture in which people are unwilling to speak the name of the disease obviously has a special fear. ... Cancer alone is mythologized as some savage god, whose very name will invoke its presence. If the name of cancer is unspeakable, what evil does the person with cancer believe can be brought by his presence?4(p97)
Personal shame, the jeopardizing of dignity, and social stigma are 3 aspects of the spiritual wounding carried by those who have experienced a betrayal of the body.
PHYSICAL THERAPY AS SPIRITUAL CARE
PTs can improve their ability to integrate spiritual care into their practice by asking 2 sets of core questions. One set of questions has to do with: What am I todowith and for this person? The other set of questions has to do with: How am I tobewith this person?
The “Doing” of Hospice Spiritual Care
The answer to the question of “what to do” with or for the person dying of cancer begins with the recognition that having been “disembodied” by cancer as a chronic disease has its parallel to having been “disembodied” by trauma. The consequence of this means that the PT is to assist in returning the personhood to the one dying of cancer by, in effect, “returning” the person to his or her body—readjusting the person's relationship with his or her body so that the dying person feels “restored” and “relieved” of the effects that the traumas of cancer have had upon him or her.
One way this could be enacted would be to follow Peter Levine's11 directions in In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness. Levine prescribes the Eight Steps of “Somatic Experiencing” (SE), and he says, “If this psychobiological process is to be built on firm ground, Steps 1, 2, and 3 must occur first and must follow sequentially.”11 These steps are as follows:
- Establish an environment of relative safety.
- Support initial exploration and acceptance of sensation.
- Establish “pendulation” and containment: the innate power of rhythm.
These 3 steps may not be too different from the PTs' usual practice aims; they certainly do seem to be possible to implement within a hospice care setting. They could establish a basis for the spiritual aspects of the physical therapy of the hospice patient.
This is because Levine claims for SE a spiritual purpose and benefit. He tells us that “traumatized people are fragmented and disembodied.”11(p355) To help them experience a restoration of the “goodness” of themselves, Levine's practice aims to restore a balance or homeostasis between the person's sympathetic and parasympathetic nervous systems. When this “flexible, seesawing, shifting range of arousal” is experienced as “dynamic equilibrium and relaxed alertness along with energy, passion and focus,”11(p354) Levine says his clients have referred “to their therapeutic work as ‘a holy experience.’”11(p347) He recognizes this healing as incarnating the spiritual virtue of hospitality: “In becoming embodied they return from their long exile. They come home to their bodies and know embodied life, as though for the first time.”11(p356) Certainly, those on hospice will be more likely to experience an “embodied” dying12 thanks to the spiritual care of the PT.
Moreover, the hospice PT who is hesitant about recognizing the spiritual value of his or her care could be helped to realize that his or her spiritual care need not entail storytelling or even verbalization. This is not to say that the body does not have its stories to tell. It is to say that the invitation to verbalize, to talk about, often implies that a spiritual caregiver should have the skills and experience to know how to reply. Therefore, when issues of verbalization arise during the physical therapy of the dying, a referral to the hospice's spiritual caregiver is recommended.
To counter the inclinations of the PT who is hesitant to see their encounters as spiritual because of his or her preconception that spiritual exchanges are always verbal, Levine underscores a nonverbal, perhaps preverbal, certainly unspoken, and perhaps even unspeakable quality to the spiritual interaction between the PT with spiritual intentions and the person with cancer dying on hospice. The essence of the Sacred is that more is than can be said. In the Silence of those moments, the Holy happens. Levine captures this essential aspect of spiritual care when he speaks to the meaning of the body's “unspoken voice.”
Hospice PTs, along with hospice aides,13 have this advantage over professional spiritual caregivers: they can touch the patient. This means that hospice PTs do not have to think of themselves as replacements for hospice spiritual caregivers. They only have to realize that there are spiritual dimensions to the physical therapy they are already doing. That can be done by “listening” to what the body of the patient “says,” beyond what the mouth of the patient says.
This distinction becomes especially important as the patient is able to speak less. The hospice PT's spiritual care can continue in the resonance between the person's body and that of the hospice PT, as Bolen suggested. PTs have the special skill of being able to “listen” with their hands.
The “Being” a Hospice Spiritual Caregiver
The answer to the question of “how am I to be” with the person dying of cancer begins with the realization of the importance of treating the person and the family/support system as the unit of care. In this, hospice PTs have the same responsibility as every other member of the hospice team to provide this one particular aspect of spiritual care: presence. Putting it this way is insufficient, however. For when we arrive at the scene of care, we bring with us whatever “presence” we happen to be at the moment. Realizing this, it is all the more important that the hospice PT strives to be a nonanxious presence.
The term “nonanxious presence” comes from Edwin Friedman's14Generation to Generation, in which he extends Murray Bowen's theories about family systems to organizations, especially to those “work systems” whose “business is ‘life.’”14(p197) Insofar as Friedman's perspective could be applied to the functioning of the entire hospice team, his insights into being a nonanxious presence have value in themselves.5
Since our focus is on the PT's interactions with the entire unit of care, similar Bowen-based analogies are more germane. That is, every member of the unit of care comes to hospice spiritually wounded, as described. As a result, the anxiety levels in the system of care have risen from chronic to acute. Friedman tells us that “anxiety's major tone is seriousness.”14(p209) Certainly, almost no unit of care is more “serious” than when one of its members is dying. In fact, the seriousness of the unit of care and the heightened anxiety is directly related to the “diagnostic thinking” to which they have become accustomed. Friedman noted that “diagnosis intensifies anxiety.”14(p209) The medical model of hospice care reinforces this diagnostic thinking, unwittingly increasing the anxiety in the unit of care.
To be a “nonanxious presence” in a unit of care immersed in such seriousness takes what Friedman calls a capacity for the “paradoxical.”14 Friedman uses the analogy of an electrical circuit to illustrate his point: “To the extent that we can recognize and contain our own anxiety, then we function as step-down transformers or perhaps circuit breakers” to lower or prevent the anxiety in the unit of care from becoming overwhelming.14(p209) In effect, Friedman is echoing Bowen's “Calm is ‘catching,’ too.”15
To end where we began, the PT's care takes on a profound focus when he or she is being aware of its spiritual value and effect. It is enough to touch, to release, and to trust one's own skills as being of spiritual benefit for the person dying from cancer. This is how the hospice PT brings “comfort and relief.” And it is enough to be a calming presence for the entire unit of care. This is how the hospice PT brings “peace and ease.” Frank asserts: “Witnessing the particulars of that experience, and recognizing all its differences, is care.”4(p49) He underscores “witnessing” as a term appropriate to the spiritual aspects of the care the PT brings to the entire unit of care and to his or her participation on the hospice interdisciplinary team. For, by bearing witness to what the unit of care is experiencing, the hospice PT articulates the “spirituality and meaning” in which they all are participating.