the Eyes of the Patient Essay

the Eyes of the Patient Essay

the Eyes of the Patient Essay

Allied health professionals are confronted with different death and dying practices. An effective allied health professional recognizes the importance of understanding different cultural practices, and learns how to evaluate the death, dying, and spiritual beliefs and practices across the cultures.


Read the two specified case histories and choose one for this assignment.

Chapter 4, “Stories of Abby: An Ojibwa Journey” and Chapter 14, “Stories of Shanti: Culture and Karma,” by Gelfland, Raspa, and Sherylyn, from End-of-Life Stories: Crossing Disciplinary Boundaries (2005), from the GCU Library.

Identify your role as a health care professional in supporting Abby’s or Shanti’s dying rituals, and in creating strategies for displaying respect while still providing quality care. Identify communication strategies necessary in caring for your select person. Integrate your strategies as you develop a care plan describing how you would approach the situation and care for the patient. Review the “Care Plan” template prior to beginning.the Eyes of the Patient Essay

Include the following in your care plan:

  1. Communication: family and patient
  2. Treatment options that align with the specific culture
  3. Education: family and patient
  4. Family roles in the process
  5. Spiritual beliefs
  6. Barriers
  7. Cultural responses
  8. Any additional components that you feel would need to be addressed (from your perspective as a health care professional)the Eyes of the Patient Essay

**Please choose one story and use it to answer the prompWhen 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 hospice 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 job177
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178 End-of-Life Stories: Crossing Disciplinary Boundaries
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.the Eyes of the Patient Essay
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 perfection, or nirvana.
The hospice staff was faced with a number of dilemmas requiring resolution. Could they admit Shanti to the hospice programthe Eyes of the Patient Essay
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 themselves?
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 ethically and legally. Shanti was not informed of her medical situation,the Eyes of the Patient Essay
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.the Eyes of the Patient Essay
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
Gelfand, D. E., Raspa, R., & Briller, S. H. (Eds.). (2005). End-of-life stories : Crossing disciplinary boundaries.the Eyes of the Patient Essay
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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 considerations 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.the Eyes of the Patient Essay
Ethics deals with a systematic approach to questions of morality, providing a philosophical framework for moral decisions
(Doorenbos, Briller, & Chapleski, 2003). Yet, in cases of crosscultural 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 resonate 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.the Eyes of the Patient Essay
Living in the United States and maintaining their Hindu
heritage and Asian Indian culture placed Shanti’s family in a difficult 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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180 End-of-Life Stories: Crossing Disciplinary Boundaries
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.the Eyes of the Patient Essay
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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Stories of Shanti: Culture and Karma 181
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 between 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 protections in matters of informed consent. Designation of such vulnerability can lead to an attitude of paternalism in which patients are
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182 End-of-Life Stories: Crossing Disciplinary Boundaries
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 characterize 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 beliefs.
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 crossculture 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 assessment 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, however 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 differences in beliefs and practices that are common within multigenGelfand, D. E., Raspa, R., & Briller, S. H. (Eds.). (2005). End-of-life stories : Crossing disciplinary boundaries.
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184 End-of-Life Stories: Crossing Disciplinary Boundaries
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 participated 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 administration, 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 requires 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 understand 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 matters 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 linkage 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 nonHindu 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 objective 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 technology 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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186 End-of-Life Stories: Crossing Disciplinary Boundaries
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 requirement for karmic purification; consciousness gives human proportion 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 Western 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 practices. 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 distress. 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 condition 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 corporeal 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 commuGelfand, D. E., Raspa, R., & Briller, S. H. (Eds.). (2005). End-of-life stories : Crossing disciplinary boundaries.
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Stories of Shanti: Culture and Karma 187
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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