Living with Dying
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Living with Dying

A Handbook for End-of-Life Healthcare Practitioners

Joan Berzoff, Phyllis Silverman

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eBook - ePub

Living with Dying

A Handbook for End-of-Life Healthcare Practitioners

Joan Berzoff, Phyllis Silverman

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About This Book

The first resource on end-of-life care for healthcare practitioners who work with the terminally ill and their families, Living with Dying begins with the narratives of five healthcare professionals, who, when faced with overwhelming personal losses altered their clinical practices and philosophies. The book provides ways to ensure a respectful death for individuals, families, groups, and communities and is organized around theoretical issues in loss, grief, and bereavement and around clinical practice with individuals, families, and groups.

Living with Dying addresses practice with people who have specific illnesses such as AIDS, bone marrow disease, and cancer and pays special attention to patients who have been stigmatized by culture, ability, sexual orientation, age, race, or homelessness. The book includes content on trauma and developmental issues for children, adults, and the aging who are dying, and it addresses legal, ethical, spiritual, cultural, and social class issues as core factors in the assessment of and work with the dying. It explores interdisciplinary teamwork, supervision, and the organizational and financing contexts in which dying occurs.

Current research in end-of-life care, ways to provide leadership in the field, and a call for compassion, insight, and respect for the dying makes this an indispensable resource for social workers, healthcare educators, administrators, consultants, advocates, and practitioners who work with the dying and their families.

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Year
2004
ISBN
9780231502146
PART I

NARRATIVES IN END-OF-LIFE CARE
1

FRAGMENTS OF LOVE: EXPLORATIONS IN THE ETHNOGRAPHY OF SUFFERING AND PROFESSIONAL CAREGIVING
DAVID BROWNING
Let the fragments of love be re-assembled in you; only then will you know true courage.
—Hayden Carruth
WHEN I was thirteen, my mother died. There was no room for grief in a household of three boys and a father who, in his own encounter with mourning, set the best example he knew: you pull yourself together, you get on with life. I remember little in the way of emotion or consolation, but I do remember the numbness. The embodied memory I hold of the months following her death is one of floating in a cloud of gray gauze: alone, desolate, but cushioned from pain.
Twelve years later, in the consulting room of a therapist who conveyed by his warmth that he would suffer with me whatever pain was unearthed, the numbness gave way to a deep mine of emotions. Soon after the excavation began, I began to reestablish what had been a long-interrupted communication with my mom. The conversation commenced with fury. I wrote the following poem on May 9, 1977, my twenty-fifth birthday:
ON VISITING MY MOTHER’S GRAVE
If I could snatch you from your grave
If I could shake you from your slumber
If I could speak with you for five minutes
If I could hold your hand
If I could have your love
If I could only feel it
If it could only guide my days
If I only had it to fall back on
If you could be there when I need you.
Your death was vicious—and senseless.
They had no right
You had no right
To leave me alone.
You took away my bearings
And I have been detached
From people
From living
From myself.
I have been afraid to live or to love.
You took my joy with you
And if I dare to live or love again
To do so with abandon
I again take the risk
Of my joy being snatched away
Recklessly
To be buried in a box.
Safer to exist cautiously.
To not risk my love on living
Or risk my life on love.
Better to construct my own world
Of maximum security.
A maximum security prison
Where the only one
That can be dangerous to me
Is myself.
How is my personal story relevant to an understanding of the ethnography of suffering? What insight does it bring to my encounters with the dying and the bereaved? I believe that when we, as professional caregivers, accompany others through tragic life events, our own experiences with suffering, and the sense that we make of those experiences, constitute both the starting and ending points of these explorations.
THE ETHNOGRAPHIC LENS
Ethnography, a practice borrowed from anthropology, is a tradition of looking, listening, and responding to human beings as an avenue toward understanding and helping. The person who is trying to understand and to help is an integral part of the process. The knowledge that emerges between caregiver and client is collaborative and mutual. The ethnographic approach provides access to culture, broadly defined. This broad definition of culture assumes fluidity between one’s inner experience and the outer world. It views people as contextual beings, influenced by gender, age, class, race, ethnicity, sexual orientation, and religion/spirituality, as well as a myriad of additional variables that shape identity. Culture thus defined is a process of meaning making that occurs both internally, in conversations within the self, and externally, in conversations between the self and the other. Ethnography provides a holistic and inclusive perspective that can accommodate the richness and complexity of both “external” and “internal” processes that occur both between and within caregiver and client in the clinical encounter. Several authors have argued for adopting an ethnographic perspective as a productive route toward understanding in psychotherapy and the helping professions (Andersen and Goolishian 1992; Falicov 1995; Klass 1999; Laird 1998). For the purposes of this chapter, ethnography provides a framework for understanding the many levels of meaning at work in the encounter between caregiver and a client in the throes of suffering. Central to this framework is the lived experience of caregiver/ethnographer and client: “The ethnographer’s focus moves back and forth. The task is to interpret patterns of meaning within situations understood in experience-near categories; yet, ethnographers also bring with them a liberating distance that comes from their own experience-near categories and their existential appreciation of shared human conditions. That means that ethnography, like history and biography and psychotherapy, holds the possibility of a way of knowing more valid to the dialectical structure and contingent flow of lived experience than reductionistic forms of knowing which by definition distort the existential conditions of life” (Kleinman and Kleinman 1991:278).
In my social work practice, I often work with clients who are grieving traumatic losses. I know that who and how I am with my grieving clients, and who and how they are with me, will form the foundation from which new understandings will emerge. My clients’ suffering has the potential to teach me something. My own suffering has the potential to teach something to my clients. As I sit with them in their anguish, I am acutely aware that the starting point in my effort to engage with and understand them is my own repertoire of personal experience, which dates back to a time in my life when I judged it “better to construct my own world of maximum security” than to “risk my life on living” or “risk my life on love.” I know at least something about the fragmentation of love that suffering creates; I know at least something about the isolation, detachment, anger, and depression that can follow.
In this chapter, I will explore several fundamental issues relevant to an appreciation of human encounters in end of life and bereavement care: (1) the ethnography of suffering in the context of religion, history, and medicine; (2) the ethnography of professional caregiving, suffering, and meaning making; and (3) the caregiver’s encounter with suffering.
THE ETHNOGRAPHY OF SUFFERING IN THE CONTEXT OF RELIGION, HISTORY, AND MEDICINE
The word “suffering” derives from the Latin verb sufferre, which means “to bear,” “to undergo,” or “to carry.” Suffering can be defined as a state of severe distress that occurs on a biological, psychological, spiritual, and/or sociocultural level, and that is associated with events that threaten the sense of intactness of the person. Suffering often poses the existential challenge of the loss of meaning and purpose. With suffering at the end of life, there is a loss of personhood itself, a process that occurs repeatedly and progressively up until the time of death.
RELIGION
Historically, religion has been the custodian and arbiter of suffering at the end of life. All world religions attempt to understand and explain the meaning and purpose of suffering. The following examples discuss suffering in the context of Buddhism, Christianity, and Judaism.
In the Buddhist tradition, suffering is considered the “stuff of existence.” It arises from a person’s attachment to the world—physical pleasures, material possessions, personal accomplishments and failures, relationships of love and hate, and ultimately attachment to the self. The Buddhists are fond of saying that we all suffer from a terminal case of “somebody-ism.” That is, we all tend to become self-absorbed and attached to ourselves in ways that bring about suffering. Consider the following exchange between the African American scholar bell hooks and Pema Chodron, a Buddhist nun:
HOOKS: It seems so much of our longing to escape suffering arises from the sense that the closer we are to suffering, the closer we are to death.
CHODRON: For me, the spiritual path has always been a lesson in how to die. I don’t mean just the death at the end of this life, but all the falling apart that happens continually. The fear of death—which is also the fear of insecurity, of not having it all together—seems to be the most fundamental phenomenon we have to work with: because death is an ending, and endings happen all the time. Things are always ending and arising and ending. But we are strangely conditioned to want to experience just the birth part and not the death part. (HOOKS 1995:26)
In the Christian tradition, suffering is also understood as an inevitable part of human life. The Christian orientation holds that the release from suffering lies not in this world but in the hereafter. Based on the example of Jesus, there is an emphasis on “offering up” one’s suffering for those in distress, and as repentance for sin. A frequently spoken prayer in Christian liturgy is “Lord Jesus, I offer to you my prayers, works, joys, and sufferings of this day for all the intentions of your sacred heart, in reparation for my sins and the sins of the world” (Byock 1996:238).
C. S. Lewis, the Christian author and theologian, focused on what he called “the problem of pain.” He professed that the ultimate good in life is in consciously surrendering oneself to God. Without suffering, human beings would remain focused on their own goals and desires and on the worries of the world. God gives suffering to us out of love, so that we might be made perfect by surrender. Lewis was sorely tested in his beliefs when his wife, the American poet Joy Gresham, died very soon after their marriage.
Talk to me about the truth of religion and I’ll listen gladly. Talk to me about the duty of religion and I’ll listen submissively. But don’t come talking to me about the consolations of religion or I shall suspect that you don’t understand. (LEWIS 1961:28) Aren’t all these notes the senseless writings of a man who won’t accept the fact that there is nothing we can do with suffering except to suffer it? Who still thinks there is some device (if only he could find it) which will make pain not to be pain? It doesn’t really matter whether you grip the arms of the dentist’s chair or let your hands lie in your lap. The drill drills on…. (LEWIS 1961:38)
The Jewish perspective, rather than embrace the view of suffering as sacrifice, stresses the promise of humility and insight inherent in pain. The lesson of suffering depends on one’s capacity to recognize the limitations of human knowledge. Whenever human words and human knowing are stretched to their outer limits, there is the potential for insight. The modern poet David Rosenberg exemplifies this outlook when he gives these words (1977:25) to the biblical Job in response to the “friends” who provide too-facile reasons for Job’s extreme suffering:
you are all plasterers
you think you are doctors
but it’s only broken walls before you
you smear them over
with a whiteness of lies
a color you take for truth itself
you should shut up before them
and your silence becomes
a road to wisdom.
Job rejects his friends’ shallow and self-serving efforts at consolation and explanation. He knows how profoundly insufficient they are. Job suggests here that sometimes the most fitting response to human suffering can be a respectful and attentive silence.
HISTORY
Over the past four hundred years, our understanding of suffering at the end of life has shifted substantially (Walter 1994). In the sixteenth and seventeenth centuries, end-of-life concerns revolved around the dying person’s confirmation or rejection of faith. Last-minute repentance from sin could change the course of one’s potential destiny, as could apostasy, the renunciation of one’s faith. Lethargy, delirium, and excruciating pain often prevented the dying person from uttering these final words, but strict believers saw this as a spiritual, not a physical, failure.
During the sixteenth and seventeenth centuries, published accounts of deathbed words and behavior were often published postmortem as a way of defining the person’s life. There was special interest in women’s words, since women were never allowed to speak in other religious settings while they were alive. Notorious criminals were also watched very carefully on their deathbeds, to see if there might be any last-minute repentance or acceptance of faith. The deathbed was the scene in which one’s beliefs were put to their final test; the requirement of confirming one’s faith at the end of life applied even to atheists. Recantation invalidated an atheist’s life.
In the eighteenth and nineteenth centuries, and into the twentieth, the growing authority of medicine undermined the centrality of religion. There was a shift from a concern that the priest be present to elicit faith to a concern that the doctor be present to administer opium. By the time we moved into the twentieth century, we were more likely to ask “Did she die in pain?” or “What was the cause of death?” than we were to ask “Did she die affirming her faith in God?” Medical accounts of the dying process became more central throughout the twentieth century.
In the last third of the twentieth century, and moving into the new millennium, we have seen a psychological/personal-growth version of suffering develop alongside the medical model. Now, in addition to the question “Was he in pain?” we want to know “Did he make his peace with his wife/mother/children? Was everything said that needed to be said? Was the “unfinished business” attended to?” So in the present social context, we approach the last chapter of life with an emphasis on finishing personal business in the context of a relatively pain-free death.
MEDICINE
In our modern, secular, Western point of view, we tend to see suffering as negative and devoid of value. It should be avoided or, if unavoidable, eliminated as quickly as possible. In our largely white North American perspective, we live in “a society… where to bear or endure hardship for most of its members seems to run counter to the now dominant secular text of a world without pai...

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