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CHAPTER 14

Stories of Shanti: Culture and Karma

The body’s life proceeds not lacking Work. There is a task of holiness to do.

—Bhagavad Gita Chapter III

Shanti’s Story Ardith Z. Doorenbos

When I met Shanti, she was already a very ill 64 year old woman. I was called in as an advisor, as I had worked as a nurse in India and had insight into Shanti’s cultural concerns. Her breast cancer had spread to numerous other sites in her body. She was suffering with anorexia and weight loss, digestive problems, headaches, and pain in her shoulders, chest, hips, and back; she grimaced when she moved; she had shortness of breath and a persistent cough. She did not know she had cancer, or how ill she really was, nor did she want to know. “It is in the hands of the gods,” she asserted. Shanti was a soft-spoken, gentle woman, and it disturbed the hos- pice staff to see her in constant, aching pain, yet refusing to take pain medication.

Shanti had lived in the United States for 32 years, and her family still adhered strictly to the Hindu beliefs and practices from their early lives in India. She was in an arranged marriage, and her three children, although all born in the United States, were also in successful arranged marriages. Shanti and her husband were upset because their son did not live with them because of job-

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End-Of-Life Stories : Crossing Disciplinary Boundaries, edited by Donald E. Gelfand, et al., Springer Publishing Company, Incorporated, 2005. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/gcu/detail.action?docID=423235. Created from gcu on 2026-02-19 00:44:03.

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related reasons. Having him live elsewhere did not fit with the close extended family pattern with which they were raised. One of their daughters did live nearby, and she provided all the personal care for Shanti during her illness. The family worshipped daily at their household shrines, visited the Hindu temple for all major Hindu festivals, and believed in reincarnation and the power of karma in their lives.

To Shanti and her husband, all that happened in this life was the result of behaviors in their past lives, and her status in the next life would be the result of her behavior in this life. This is the Hindu concept of karma. To Shanti, the pain and suffering she was experiencing were given to her by the gods to be endured. Relief from her pain would produce bad karma, and would have negative ramifications for her next life. Pain medication, rather than bringing relief, would prevent her soul’s growth toward per- fection, or nirvana.

The hospice staff was faced with a number of dilemmas requir- ing resolution. Could they admit Shanti to the hospice program without revealing the diagnosis and prognosis to her? Were they required by law or moral obligation to administer pain medication to an obviously suffering patient? How could they bring themselves to understand a patient who didn’t seem to want to be helped? Could they watch her suffer each day and not be affected them- selves?

The hospice staff consulted their legal and ethical experts, who determined that the patient’s desire not to be informed of diagnosis or prognosis could and should be respected, both ethi- cally and legally. Shanti was not informed of her medical situation, nor was she made aware of the end as it approached. This decision allowed hospice staff to be more comfortable in respecting the client and family wishes about not receiving information, but watching Shanti suffer was still painful for the hospice team. Shanti eventually agreed that a modicum of pain medication—only enough to allow her to retain clear thinking—would be acceptable. Her daughter, more accustomed to the blending of her Hindu beliefs with American practices, administered the medication; Shanti’s husband would not.

Shanti died in relatively unrelieved pain, but the beauty of her story is that she died with a strong karma, at home, with her family around her. Following Hindu death practices, she died with

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Stories of Shanti: Culture and Karma 179

her head facing north, with the water of the Ganges River sprinkled in her mouth, and a bay leaf placed on her lips. She was cremated within 24 hours as required by Hindu death rites.

Arriving at an understanding of what was important to Shanti took a great deal of time and effort on the part of hospice staff. This time and effort were well spent, for Shanti died as befitted her name. Shanti in Hindi means at peace.

Cultural Response Elizabeth E. Chapleski

Shanti’s story is a prime example of conflict arising from culture clash when biomedical concepts collide with cultural and religious beliefs. For Shanti’s family, living within the context of a dominant culture very different from their own Hindu culture, ethical consid- erations are complex. American biomedical ethical principles are often viewed as incongruent, and the family feels pressured to acquiesce in the demands of the dominant culture.

Ethics deals with a systematic approach to questions of moral- ity, providing a philosophical framework for moral decisions (Doorenbos, Briller, & Chapleski, 2003). Yet, in cases of cross- cultural interactions in the United States, whose ethics should take precedence? Clearly, some ethical principles guiding the medical system in this country are not applicable from the perspectives of other cultures. One example of this conflict is biomedicine’s emphasis on autonomy and self-determination, which do not reso- nate for families like Shanti’s who are part of more collectivist cultures that value communal decision making and believe that patients should be protected from full information about their diagnoses and prognoses.

Living in the United States and maintaining their Hindu heritage and Asian Indian culture placed Shanti’s family in a diffi- cult position when dealing with some aspects of American hospice care. It is not clear how the family came to choose hospice or what their expectations might have been when she was enrolled in the program. In Shanti’s story, hospice staff made the effort to consult with a nurse experienced with Hindu beliefs and rituals who could help the staff adapt their care to better meet the family needs. The nurse consultant explained that as Hindu persons age, their quality

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of life is defined more by spiritual aspects than physical functioning (Kodiath & Kodiath, 1995). For 64 year old Shanti, as her physical health declined, it became increasingly important for her to focus on her spiritual journey even if it meant enduring physical pain that would seem intolerable to others.

The religious concept of karma within Hinduism is critical to understanding Shanti’s story. The doctrine of karma teaches that all experience is the reward or punishment for previous actions (Bhungalia & Kemp, 2002). Karma states that health and disease are the predetermined effects of actions taken by individuals at some previous time, either in their present life or in one of their numerous past lives (Laungani, 1997). Karma gives rise to a belief that life and death are in the hands of the gods. Before the soul leaves this body, it creates for itself another. A soul continuously prepares for its next life both through, and in response to, its present circumstances, just as a person prepares for tomorrow by way of today’s events and actions. At the time of death, a person who has not suffered enough in the present life will continue to suffer in the next life. Therefore, if suffering is properly endured in the current life, the reward will be less suffering in the next life. One of the important messages of Hinduism is to strive to overcome physical pain and suffering through dissociation. Instead of focusing on the pain, the focus is placed on meditation to achieve a state of peace and transcendence above physical pain. When peace is achieved through meditation, the soul is freed to return in the next life cycle in a higher incarnation. If peace is not achieved and the lesson of this life’s suffering are not learned, the suffering continues in the next life cycle. It is in this sense that Hindus say that an individual creates the next life.

Within American biomedicine it is believed that severe pain inhibits a person’s ability to relax and focus on achieving spiritual meaning and peace at the end of life. It is difficult for many health care providers in this country to understand why a patient would want to endure physical pain when means for its relief are readily available. Yet the power of a meditative dissociation has been demonstrated by people who walk over hot coals or rest on a bed of nails as they practice mind and spirit transcendence over the physical body. Perhaps our health care system would benefit by being more open to methods such as meditation and dissociation from pain rather than limiting care to pharmaceutical numbing of

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the senses. The story of Shanti and her family suggests that there is added benefit to expanding our understanding and that there are many different ways to interpret the meaning of pain and the experience of suffering.

Hospice was a good choice of care for this family because a hospital or nursing home facility would have been less likely to accommodate the observance of Hindu death rituals. Additionally, the family’s cultural expectation of care for the dying at home was met. The tendency in hospice programs is to value patient control or family decisions at the end of life even when those values seem at odds with fundamental hospice values. This story underscores the necessity of tailoring hospice and other end-of-life services to meet the spiritual, religious, and cultural needs and desires of dying persons, their families, and their communities. Together, the hospice staff, the family, and Shanti found a common path that respected and honored her as a Hindu woman fulfilling her destiny in death.

Ethics Response Donald E. Gelfand

Some questions raised by this story include whether it is ethical not to inform patients of their illness and prognosis, and whether it is ethical to not provide extensive relief from pain.

In Western medicine, physicians subscribe to the Hippocratic Oath, which stresses nonmaleficence, the primary principle of doing no harm. An opposing principle is that of beneficence, or actively doing good (Beauchamp & Childress, 1994). Distinguishing be- tween these two seemingly clear opposites is not necessarily easy in individual cases. It can be argued that Shanti’s physicians and nurses were concerned that by acquiescing in Shanti’s requests they were not fulfilling their professional responsibilities to provide both adequate pain relief and a clear disclosure to Shanti about her diagnosis and prognosis. They recognized, however, that both pain control and preferences for disclosure are cultural factors.

Terminally ill individuals such as Shanti are regarded in health systems as particularly “vulnerable” and in need of special protec- tions in matters of informed consent. Designation of such vulnera- bility can lead to an attitude of paternalism in which patients are

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viewed as less than fully capable. The U.S. Supreme Court has handed down recent decisions upholding the rights of states to ban assisted suicide. The court’s rulings rested in part on the perceived vulnerability of terminally ill persons and their need to be protected from potential coercion to engage in assisted suicide. It has been argued, however, that such paternalism can quickly become a rationale for taking the rights of self-determination away from individuals. Silvers (1998) cautioned that

. . . the history of marking marginalized groups as needing special protection is replete with instances in which to charac- terize a class of persons as weak is to deprive them of the power of self-determination. (p. 135)

There is concern in the medical community and among legal scholars and ethicists that the tendency to paternalism has often led to the so-called “conspiracy of silence,” in which patients are not adequately informed about their diagnosis or prognosis (Katz, 1984). Physicians and other providers are sometimes afraid to talk openly about prognoses that will either reduce the patients’ sense of hope or lead them to stop “fighting” against their illness (Christakis, 1999). There is fear that truth-telling about terminal prognosis can become a self-fulfilling prophecy for patients and their families; however, Western medical ethics and cultural values clearly favor telling “the whole truth and nothing but the truth.” This ethical dilemma is illustrated clearly in the story of Shanti, where care providers are called upon to maintain silence about diagnosis and prognosis to honor patient and family religious be- liefs.

Another ethical question faced by providers in situations such as Shanti’s is whether or not to intervene aggressively to relieve pain. Data indicate that approximately 90% of all physical pain can be alleviated (Jacobs, 2003). Palliative care services are directed toward the elimination of pain using a variety of techniques and medications. Some of the medications commonly used for pain relief also diminish cognitive capacity and may render the patient unconscious as the physical processes of death proceed. Loss of cognitive capacity is considered a fair trade-off for the relief of pain and suffering because medical providers generally believe that death should not be painful or involve unnecessary suffering for patients or their families.

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Stories of Shanti: Culture and Karma 183

It is important to have a clear understanding of the concept of suffering. Cassell (1999) defines suffering as “a specific state of distress that occurs when the intactness or integrity of the person is threatened or disrupted” (p. 531). The following story provides another example of suffering as it relates to ethical considerations by health care providers even without the complications of cross- culture interactions:

In recent rounds at a major medical center, a palliative care physician visited a 63-year-old woman with extensive spread of cancer. On the basis of her diagnosis, the physician was certain that the patient had only a short time left to live. The physician asked the woman about her pain, and physical assess- ment revealed that the patient was not experiencing physical pain. She was, however, very upset and concerned about dying. Although she was not in physical pain, she was suffering. The physician decided to reduce this woman’s pain medication to a bare minimum as long as she was not experiencing severe pain. This enabled her to move forward with clear thinking to work on unresolved life and spiritual issues that would help to relieve her suffering.

Cassell (1999) suggested exploring patient suffering through questions such as “I know that you have pain, but are there things that are even worse than just the pain?” (p. 532). For Shanti, it is clear that that there were things worse than just her pain. What concerned her most was respect for her beliefs regarding the rebirth of her soul, retaining her cognitive ability to fully participate in the traditional Hindu death rites, and enduring pain and suffering according to her religious beliefs.

The ethical issues in Shanti’s story are also closely related to the spirituality domain. Sulmasy (2002) defines spirituality as “an individual’s or a group’s relationship with the transcendent, how- ever that may be construed” (p. 25). Shanti and her family have a strong relationship with the transcendent and, in this conception, strong beliefs about the administration of pain medication. In fact, the family believes that the pain is related to Shanti’s karma. It is possible to argue that it would be unethical to provide pain relief to Shanti because this would violate her spiritual principles and religious practices.

Shanti’s story also illustrates some important intrafamilial dif- ferences in beliefs and practices that are common within multigen-

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erational families. It is possible that traditional Hindu spiritual beliefs are not held as strongly by Shanti’s daughters as they are by Shanti and her husband. One daughter regularly administered a small dose of pain medication, but Shanti’s husband never partici- pated in giving medication. It is unclear from the narrative what this difference in the involvement of the daughter and husband in relief of Shanti’s pain signifies. However, it is possible that the daughter was willing to administer this pain medication because she is less strongly adherent to Hindu beliefs, a change that some might argue is related to her degree of acculturation to Western society. Support for this argument might be seen in the fact that the couple’s son and daughter live independent of the parents.

Shanti’s story does not provide specifics about how certain ethical decisions, such as involvement in medication administra- tion, were made. Shanti’s husband may have wished to see his wife free from pain but not have been willing to become involved in a process that he regarded as a violation of important cultural and religious tenets. There is, however, another possible explanation. It could be that the husband did not become involved in the administration of pain relief because he regarded this caregiving as “woman’s work,” inappropriate work for a man to undertake.

Whatever the explanation, understanding the situation re- quires an approach that takes into account the complexity of large cultural issues in decision making. The story also illustrates “issues of generation or age, gender and power relationships, both within the patient’s family and interactions with the health care team” (Koenig & Gates-Williams, 1995, p. 248). What this series of circumstances shows is that personal belief systems are complicated and may incorporate certain aspects and practices more strongly than others for a variety of reasons. Shanti’s story illustrates the need for careful and sensitive collecting of medical and social information from the family’s own perspectives to really under- stand individual, family, and community belief systems.

Narrative Response Richard Raspa

Shanti’s story encodes the grand narratives of East and West. In the Hindu East, living is God-centered, represented in a story in

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Stories of Shanti: Culture and Karma 185

which one’s life extends backward and forward at the same time. Experiences in the present are the result of behavior in past lives, and conduct in the present will determine experiences in a future reincarnation. Everything is causally connected. Everything mat- ters here and now, forever. In contrast to the Hindu reality, the grand story of the West is person-centered. This individual life— here and now—is the one that matters. Life can be made better through technological progress. The traditions of the three great religions of the West—Judaism, Christianity, and Islam—assert a connection between time and eternity (Campbell, 1972). The link- age is linear, rather than cyclic as it is in Hinduism. After death, one’s consciousness may extend into another plane, but it is this individual person—his or her soul, perhaps—that survives the body in a heavenly domain without borders, limits, extension, or time. Death signifies the end of life. In Western religious systems, there is no coming back into time. After earthly existence, there is, for some, the possibility of being with God.

Shanti’s story accentuates the chasm between Hindu and non- Hindu beliefs. How to act in the face of pain and death, even the meaning of suffering, disease, and dying, are socially constructed and transmitted in stories. Shanti believes that pain medication does not bring relief but rather inhibits spiritual growth, a belief elaborated in Hindu sacred texts (Mack, 1997). There is no objec- tive experience of pain or death. Anxiety arising from neglecting religious strictures, the narrator suggests, exceeds any bodily pain Shanti feels.

To the distress of the hospice professionals, Shanti’s choice is to suffer pain without medication. It is a decision arising out of her Hindu beliefs. Pain is symbolic, the result of past actions, given by the gods to be endured, purifying the soul for the next incarnation. Shanti’s choice renders American biomedical technol- ogy extraneous. In the face of her burning resolve, doctors and nurses look on helplessly as Shanti endures her metastasized cancer gnawing away at her chest, stomach, brain, shoulders, hips, and back. Shanti doesn’t know—nor does she wish to know—what is happening to her body: “It is in the hands of the gods.”

The narrator has to interpret for the hospice workers the idea that refraining from Western medicine in treating Shanti is not an abdication of their professional responsibility as healers. Hospice workers are coached to see that Shanti’s suffering is part of a

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valid worldview. Shanti, too, consents to a solution that settles the conflicting claims of Hindu and biomedical practice. In her final days, she agrees that taking small doses of pain medication will not cloud her thinking. She can remain alert as the fury of pain is slightly tempered. Consciously enduring suffering is a require- ment for karmic purification; consciousness gives human propor- tion to suffering. Despite accepting Western intervention in the form of minimal pain medication, Shanti remained conscious of her physical and spiritual self until the end. For Shanti, pain is not an experience to be manipulated by drugs, but a mode of learning and a karmic path to purification. A motif of the West- ern narrative, intervening and controlling natural processes, is changed here.

The narrative also speaks of how the family both retains and negotiates new variations of their traditional Hindu cultural prac- tices. Shanti’s children, although American-born, are in arranged marriages. There is a break, however, with their cultural traditions regarding living arrangements. The son is living away from his parents, a situation that causes Shanti and her husband some dis- tress. What we are seeing echoes how the children of immigrants negotiate the claims of family customs and the often rival demands of American society. For them, being the same and being different from both other Hindus and other Americans is the normal condi- tion of living.

In this story, the narrator serves as cultural consultant between East and West, explaining interpretative differences to Shanti and her family on the one side, and physicians and nurses on the other. She articulates the points of contention between the two cultures with respect to death and dying. In this account, the body is the site of contested meanings. In Western biomedicine, diseases are explained as biochemical, physiological phenomena. Technology can—and should—intervene and help to alter the course of corpo- real processes. Although disease, in biomedical culture, is regarded as an organic breakdown which can be analyzed, treated, and, in the best of conditions, healed, there is sometimes a tendency to hold the patient responsible for the sickness. In the case of heart disease, for example, some health professionals may blame failure to practice moderation in diet or indolence in evading regular exercise as moral transgressions and the source of illness. These assessments, however, reflect the failure of the provider to commu-

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nicate well rather than the moral status of the patient or the cultural imperatives of Western society. Ideally, conventional biomedicine treats diseased parts of the body as biochemical processes rather than moral failures. For the East, by contrast, disease is charged with symbolic meanings. Physical symptoms, such as pain, reflect an allegory of the soul’s progress through incarnation. The body is the nexus between time and eternity. It is the site where divine power and human fallibility meet. People suffer in their bodies the consequence of moral action.

The narrator’s success as a cultural advisor requires profound listening. She must listen from a place of stillness inside that is untouched by the fear and frustration around her. She must hear the stories of cultural meanings and recreate them for others—the stories of Shanti, her family, and the hospice staff. Hearing the pain and fear and helplessness is the catalyst for what the narrator describes as a dramatic transformation. There is reciprocity here. The narrator hears the stories of both Shanti and hospice staff. In turn, she retells and interprets the perspective of each side to the other.

This is a story of amazing understanding. From the narrator’s perspective, everyone listens. Everyone is heard. Everyone is touched by a story and transformed. Shanti’s death is beautiful, the storyteller believes, because it has integrity and wholeness. Shanti dies embracing that which graced her life with meaning. Surrounded by family, Shanti dies with her belief system intact in accordance with the prescriptions of Hindu law.

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