The College of New Rochelle

Digital Commons @ CNR Faculty Publications

2011

Task Models and the Dying Process Kenneth J. Doka College of New Rochelle, [email protected]

Follow this and additional works at: http://digitalcommons.cnr.edu/facpubs Part of the Gerontology Commons Recommended Citation Doka, K. (2011). Task Models and the Dying Process. In Doka K. and Tucci, A. (Eds.), Beyond Kubler-Ross:New Perspectives on Death, Dying and Grief (pp. 31-42) Washington, DC: The Hospice Foundation of America.

This Book Chapter is brought to you for free and open access by Digital Commons @ CNR. It has been accepted for inclusion in Faculty Publications by an authorized administrator of Digital Commons @ CNR. For more information, please contact [email protected].

HOSPICE FOUNDATION OF AMERICA

Beyond

Kubler-Ross:

NEW PERSPECTIVES ON DEATH,DYING AND GRIEF EDITED BY KENNETH J. DOKA AND AMY S. Tucci

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CHAPTER

Task Models and the Dying Process Kenneth J. Doka

T

he 1969 publication of Kubler-Ross's On Death andDyingwas a seminal event in the development of the field of thanatology. While not the first work in the field, the book fully caught the public imagination. In that work, Kubler-Ross posited that dying persons went through a series of five stages—denial, anger, bargaining, depression, and acceptance. KublerRoss stressed that within and all through these stages hope was a constant reaction—though the content of hope may change from "perhaps I will beat this" to "I hope I see my brother before I die." These stages were subsequently applied to a wide range of situations including grief (Kubler-Ross & Kessler, 2005). The Stage Theory became so widely known and accepted that it became the predominant model taught in nursing schools (Coolican, Stark, Doka, & Corr, 1994). The model was so well known and accepted by the general public that it appeared in popular culture, serving as a basis of episodes for such television shows as Frasier and The Simpsons and providing the structure of Bob Fosse's film All That Jazz. Kiibler-Ross's On Death and Dying appeared at the right moment with the right message. Kiibler-Ross was a charismatic woman who spoke of a "natural death" at a time when there was an increased aversion to technological and impersonal care (Klass & Hutton, 1985). In that cultural context, her message found a ready audience. Moreover, the concept of stages has a long history in the human sciences— exemplified by the work of developmental theorists such as Freud (1917), Kohlberg (1984), and Erickson (1963). The appeal of a stage theory is understandable. Stages offer a level of predictability to an otherwise chaotic event. In Kiibler-Ross's case, the theory offered a sense that a frightening event—dying—could be managed; that is, that patients could be brought from denial to acceptance (Klass & Hutton, 1985). As Neimeyer indicates in his chapter, the very stage theory of dying may even have a deeper resonance. It

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mimics the structure of a classic epic where the hero has to undergo a series of difficult trials on a journey that promises deeper understanding. Kubler-Rosss Stage Theory, though still popular in lay literature, is now recognized as problematic and inadequate as a way to understand the ways that individuals cope with the dying process. Evaluations of her theory of stages (e.g., Doka, 2009) note many problems. Some are methodological in nature. Kubler-Ross never fully documented her material or her methodology; it is unclear how her data were collected or how many patients experienced which reactions. Nor has research supported the concept of stages (e.g., Schulz &Aderman, 1974). There are other problems as well. While Kubler-Ross insisted that the Stage Theory was not to be understood literally or linearly, the book clearly offers an impression of linear stages. In addition, it is unclear whether the stages represent a description of how persons cope with dying or a prescriptive approach that stresses that dying individuals ought to be assisted to move through the five stages and eventually embrace acceptance. By positing universal stages, individual differences and the diverse ways that persons cope with dying were ignored. Perhaps the most significant criticism of the stage theory of dying is that denial and acceptance were far more complex than presented by Kubler-Ross (Weisman, 1972). In Kubler-Ross's work, denial was essentially a negative state—a buffer brought on through shock of a terminal diagnosis. The dying patient had first to surmount this denial, to recognize, even in an existential anger, that death was imminent, and thereby to begin the journey toward a more peaceful acceptance or, at the very least, a passive resignation to death. However, other studies indicated that denial was much more complex. Weisman (1972) described orders of denial, emphasizing that patients might deny a number of realities in the course of the illness. In first-order denial, the patient denies the symptom. For example, the patient may deny a lump or a lesion, insisting that it was always there or the result of an injury that will soon heal. A patient in second-order denial no longer denies the symptom, but denies some aspect of the diagnosis. Third-order denial means that the patient accepts the diagnosis while avoiding the prognosis that usually accompanies it. While delineating the complexity of denial, Weisman also notes that denial is not always negative. It allows patients to participate in therapy and sustain hope. Denial is a defense mechanism. In the absence of denial at some level, there is little reason to engage in painful therapies.

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Weisman introduced a very significant concept of middle knowledge— meaning that patients drift in and out of denial; sometimes affirming, other times denying the closeness of death. Denial then is not a state that patients leave on a journey to acceptance. Rather it is a constant companion as patients deal with the reality of illness. Persons even in the later of stages of illness may deny the possibility of death in one conversation even as they acknowledge it in the next. The concept of middle knowledge considerably expands the understanding of denial. It reminds us that individuals with life-threatening illness must, at times, use denial simply to cope with the realities of life—one could not constantly focus on one's own death. Yet, as Weisman also points out, true and sustained denial in persons with life-threatening illness is rare. Such individuals, even children, are constantly assessing internal cues. They know they are getting weaker, they can feel the disease progress. They are reminded of their condition by external cues, the visits, glances, and guarded comments of others. In an Internet era, information is no longer controlled by medical monopoly; it is easily available by a few clicks of a mouse. To Weisman the important question was not "Does the patient accept or deny death?" but rather "When, with whom, and under what circumstances does the patient discuss the possibility of death?" Yet despite these serious criticisms, Kubler-Ross, in her many case vignettes, offered a model of communication that made a powerful plea for the humanistic care of the dying patient. In an excellent evaluation of Kubler-Ross' contributions, Corr, in his chapter, suggests that this call for humanistic care and her affirming message to talk to dying persons, along with the heuristic value of the work, remain the enduring legacies of On Death and Dying.

DYING AS A PROCESS

One of the limitations of Kiibler-Ross's work is that in the time it was written, many individuals diagnosed with a disease had a limited life span and dealt with her or her disease exclusively within a medical setting. As time and treatment progressed, the reality of illness changed. A diagnosis in many diseases was not necessarily a death sentence. Individuals experienced treatment, often as an outpatient, and even returned to their earlier roles. Theories have to consider the entire process inherent in a struggle with a life-limiting or life-threatening illness. Both Pattison's (1978) and Weismans (1980) work began to reflect the changing nature of the illness experience. Pattison (1978) spoke of a livingdying interval, or the time between a diagnosis and a death. As Pattison 33

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noted over 30 years ago, this is a new stage in the human lifecycle, enabled by medical advances that allowed individuals to extend life considerably. In the years since Pattison first wrote about the living-dying interval, not only has this time been extended but, for many diseases, even the certainty of death has been challenged. Pattison further divided this living-dying interval into three phases. The first phase, an Acute Crisis Phase, is characterized by the crisis of a diagnosis that disrupts the assumptions and patterns of life. The Chronic Phase is the period of time where one lives with the disease, seeks treatment, and copes with a multiplicity of fears as the disease continues to progress. In the Terminal Phase, the patient begins to disengage as he or she approaches death. Similarly Weisman (1980), studying cancer patients, spoke of a number of stages in the course of the illness. The first of Weisman's Psychosocial Stages of Cancer was Existential Plight. Here there are two sub-stages—impact distress at the time of diagnosis and existential plight proper as the patient continues to adjust to the diagnosis, initial treatment, the reality of cancer, and the threat of death. Weisman recognizes that some of these fears and issues can even arise prior to diagnosis as the patient begins to notice signs and possibly suspect cancer. This phase usually lasts about three or four months. The second stage, Mitigation and Accommodation, can last indefinitely depending on the course of the disease. Here essentially the patient learns to live with the diagnosis, adjusting to the limitations imposed by the treatment or the cancer itself. Stage three, Decline and Deterioration, occurs when the disease progresses. Here the patient's quality of life begins to suffer and the patient moves to a fourth stage, Terminality and Preterminality, as the declines become steeper and death becomes inevitable. It is critical to reiterate that Weisman did not see these stages as driven by the emotional needs of the patient but rather the progression of the disease. Myers and Lynn (2001) remind us of another reality of death in contemporary Western societies. Many people today, especially older persons, face multiple, chronic, life-threatening illnesses as they approach the end of life. This reality not only complicates care; it makes a definitive prognosis difficult. The result is that many individuals today die suddenly—in the midst of multiple chronic conditions. Stage models then have even less relevance to this new reality of dying.

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THE DEVELOPMENT OF TASK MODELS

As research in thanatology continued, the inadequacies of the stage model became evident. Scholars began to acknowledge that rather than attempt to find universal stages, theories had to account for the personal pathways individuals experienced as they encountered illness, loss, and grief. Worden (1982, 2009) offered a "Task Model" of grief. Worden began with the assumption that rather than a common set of reactions, bereaved individuals faced common problems or issues. Task I: Task II: Task III: Task IV:

To Accept the Reality of the Loss To Process the Pain of Grief To Adjust to a World Without the Deceased To Find an Enduring Connection With the Deceased in the Midst of Embarking on a New Life

Worden's Task Model found ready acceptance, and his book, Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner became a basic and enduring text in the field. There were a number of reasons for this. First, Worden in each edition was willing to modify his approach to incorporate the latest research. For example, in the first edition, Worden (1982) described the fourth task as to "withdraw emotional energy from the deceased and reinvest it in others" (p. 50)—a representation of Freud's (1917) notion of grief work. Yet as subsequent research (e.g., Klass, Silverman, & Nickman, 1996; Silverman, Nickman, & Worden, 1992) indicated deficiencies in this approach—stressing instead that individuals retained a continuing bond with the deceased—Worden (2009) revised his fourth task so it now reads: "To find an enduring connection with the deceased in the midst of embarking on a new life" (p. 50). There were other strengths to a Task Model. It acknowledged the individuality of the grief process. While individuals may have to address common issues as they encounter loss, they do so in an idiosyncratic way. Each person may have his or her own reactions and adaptations as they undertake the tasks. As with any set of tasks, some may be easier to tackle while others are more problematic. Some persons may struggle as they process the emotions inherent in loss while others may have difficulty in coping with life without the deceased. In addition, the Task Model does not assume linearity. Though labeled Task I, Task II, etc., there is no inherent order to these tasks. This again affirms the individuality of the model. Individuals will choose the task work they 35

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are competent and comfortable to do. Moreover, the model has significant therapeutic value, by offering counselors a paradigm to assess the issues that an individual is struggling with in grief, allowing focused interventions to address a given task. In a similar way, it offers models for psycho-education and group support in grief—reminding counselors that it is insufficient to focus only on emotional work as that is only one of the issues inherent in loss.

TASK MODELS OF THE DYING PROCESS

Since the Task Model proved to be an effective way to conceptualize the grieving process, it was eventually applied to assist in understanding the issues of individuals struggling with dying or life-threatening illness. Both Corr (1992) and Doka (1995, 2009) applied the concept of tasks to the dying process. To Corr (1992), individuals coping with dying had to respond to four major tasks that corresponded to the dimensions of human life—physical, psychological, social, and spiritual. The physical task was "to satisfy bodily needs and to minimize physical distress in ways that are consistent with other values" (p. 85). Corr emphasizes that unless symptom control and pain relief are adequately accomplished, the patient is unlikely to focus on other needs. Yet Corr also affirms that other issues and values may, at times, be primary to the patient. This leads to the psychological issue of maintaining a sense of autonomy and control even at a physically challenging time. Corr defined the psychological task as "to maximize psychological security, autonomy, and richness" (p. 85). This control is one critical psychological issue. Others include a need to feel safe and secure that one will not be abandoned, as well as a need for psychological richness, individually defined, even as life ebbs. The social task was "to sustain and enhance those interpersonal attachments that are significant to the person concerned, and to address the social implications of dying (i.e., sustain selected interactions with social groups within society or with society itself)" (p. 85). These include maintaining meaningful personal ties as well as retaining a connection to the larger society, and possibly utilizing effectively the resources of collective organizations such as governmental entities or spiritual bodies. Corr's spiritual task was "to address issues of meaningfulness, connectedness, and transcendence and, in doing so, to foster hope" (p. 85). This ultimately entails, to Corr, reaching a sense of what Erikson (1963) called ego integrity—a sense that one's life had meaning and purpose. Corr also defines hope as an essential aspect of spiritual care—acknowledging that the focus of hope may 36

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change in the course of an illness from perhaps a miraculous cure to a hope for a final reconciliation with an estranged family member or friend or a hope for reunion in an afterlife. Building on the work of both Pattison (1978) and Weisman (1980), Doka (1995, 2009) too proposed a task model but suggested that a life-threatening illness could be understood as a series of phases, noting that not all phases would appear in any given illness (1995). The Pre-diagnostic Phase concerns itself with the process of health seeking, and refers to the time prior to the diagnosis. One of the most common times, but not the only one, would be the time between when an individual notices a symptom and seeks medical assistance. The Acute Phase refers to the crisis period surrounding the diagnosis of life-threatening illness. The Chronic Phase refers to that period where the individual struggles with the disease and treatment. Many individuals may recover from the illness. However, it is important to remember that in the Recovery Phase, individuals do not simply go back to the life experienced before illness. They still have to adapt to the aftereffects, residues, and fears and anxieties aroused by the illness. The Terminal Phase revolves around adapting to the inevitability of impending death as treatment becomes palliative. At each phase, individuals have to adapt to a series of tasks. These tasks derive from four general or global tasks—to respond to the physical facts of disease; to take steps to cope with the reality of the disease; to preserve selfconcept and relationships with others in the face of the disease; and to deal with affective and existential/spiritual issues created or reactivated by the disease. A Pre-diagnostic Phase often precedes diagnosis. Here, someone recognizes symptoms or risk factors that make him or her prone to the illness. That person now needs to select strategies to cope with this threat. The tasks here include: 1. Recognizing possible danger or risk 2. Coping with anxiety and uncertainty 3. Developing and following through on a health-seeking strategy. The Acute Phase centers on the crisis of diagnosis. At this point an individual is faced with a diagnosis of life-threatening illness and must make a series of decisions—medical, psychological, interpersonal, and so on—about how, at least initially, to cope with the crisis. Here the tasks include: 1. Understanding the disease 2. Examining and maximizing health and lifestyle 3. Maximizing one's coping strengths and limiting weaknesses 37

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4. Examining internal and external resources and liabilities 5. Developing strategies to deal with issues created by disease (disclosure, coping with professionals, treatment options, life contingencies) 6. Exploring the effect of illness on one's sense of self and relationships with others 7. Ventilating feelings and fears 8. Integrating the present reality of the diagnosis with one's past life and future plans. In the Chronic Phase, the individual is struggling with the disease and its treatment. Many people in this phase may be attempting, with varying degrees of success, to live a reasonably normal life within the confines of the disease. Often this period is punctuated by a series of illness-related crisis. Tasks in this phase include: 1. Managing symptoms and side effects 2. Carrying out health regimens 3. Preventing and managing health crises 4. Managing stress and examining coping 5. Maximizing social support and minimizing social isolation 6. Normalizing life in the face of disease 7. Dealing with financial concerns 8. Preserving self-concept 9. Redefining relationships with others 10. Ventilating feeling and fears 11. Finding meaning in suffering, chronicity, uncertainty, and decline. In many cases people will not experience all of these phases. Sometimes in the acute or chronic phase, or even rarely in the terminal phase, a person may experience recovery. This is a Recovery/Remission Phase. Even here, however, people may have to cope with certain tasks such as: 1. Dealing with psychological, social, spiritual, and financial after-effects of illness 2. Coping with fears and anxieties about recurrence 3. Examining life and life-style issues and reconstructing one's life 4. Redefining relationships with caregivers. The Terminal Phase describes the situation in which the disease has progressed to a point where death is inevitable. Death is no longer merely possible; now

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it is likely. Death has become the individuals and family's central crisis. Tasks here include: 1. Dealing with symptoms, discomfort, pain, and incapacitation 2. Managing health procedures and institutional procedures 3. Managing stress and examining coping 4. Dealing effectively with caregivers 5. Preparing for death and saying good-bye 6. Preserving self-concept 7. Preserving appropriate relationships with family and friends 8. Ventilating feelings and fears 9. Finding meaning in life and death.

CONCLUSION

As Corr (1992) notes, Task Models offer certain inherent advantages over Stage-Based Models. First, Task Models are holistic insofar as the tasks include not only emotions but all aspects of coping with a given experience. Second, such models also allow generalization while preserving individuality. Third, task-based approaches are empowering. Individuals are not seen as swept inexorably into a set of preordained stages but rather are constantly making decisions on how they will deal with issues that arise within the process. Finally, such an approach gives guidance to counselors reiterating that a valid role is to assist patients and their caregivers as they adapt to the challenges or tasks posited by the illness experience. Though these models seem to have interesting implications for understanding the ways that individuals cope with dying and life-threatening illness, they have not been widely applied, perhaps because they do not offer the simplicity of Stage Models. It is critical to remember that they speak to limited aspects of the dying process—the process of dying and the ways that individuals, their intimate networks, and their professional caregivers cope with dying. A comprehensive theoretical model of dying would address other issues including communication, ethical decision-making, continuation and transformation of identity within the dying process, palliative care, and the ways that families and even care facilities such as hospitals and hospices maintain continuity in the face of death (Corr, Doka, & Kastenbaum, 1999). Yet, while stage models of the dying process, though historically significant, now seem limited in what they can offer, task models still represent a possible basis for the development of new approaches and paradigms of the dying process. The ultimate test of

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any model remains whether it recognizes what ultimately is a highly individual process, and still makes coping with dying and illness more understandable to those experiencing it and those who seek to help. Editor's Note: This chapter deals from material originally published in Doka, K.J. (2009). Counseling individuals with life-threatening illness. New York: Springer Publishing Co. Kenneth J. Doka, PhD, MDiv, is a professor of gerontology at the Graduate School of The College of New Rochelle and senior consultant to the Hospice Foundation of America. A prolific author and editor, Dr. Doka serves as editor ofHFA's Living with Grief® book series, its Journeys newsletter, and numerous other books and publications. Dr. Doka has served as a panelist on HFA's Living with Grief® video programs for 17 years. Dr. Doka was elected president of the Association for Death Education and Counseling (ADEC) in 1993. In 1995, he was elected to the Board of Directors of the International Work Group on Death, Dying, and Bereavement and served as its chair from 1997-99. ADEC presented him with an award for Outstanding Contributions in the Field of Death Education in 1998. In 2006, Dr. Doka was grandfathered in as a mental health counselor under New York's first state licensure of counselors. Dr. Doka is an ordained Lutheran minister.

REFERENCES Coolican, M. B., Stark, J., Doka, K. J., & Corr, C. A. (1994). Education about death, dying, and bereavement in nursing programs. Nurse Education, 19(6), 35-40. Corr, C. A. (1992). A task-based approach to coping with dying. Omega: Journal of Death and Dying, 25, 81-94. Corr, C. A., Doka, K. J, & Kastenbaum, R. (1999). Dying and its interpreters: A review of selected literature and some comments on the state of the field. Omega: Journal of Death and Dying, 39, 239-259. Doka, K. J. (1995). Coping with life-threatening illness: A Task Based Approach. Omega: Journal of Death and Dying, 32, 111-122. Doka, K. J. (2009). Counseling individuals with life-threatening illness. New York: Springer Publishing Co. Erikson, E. H. (1963). Childhood and society (2nd ed.). New York: Norton. 40

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Freud, S. (1957). Mourning and melancholia. In J. Strachey (Ed. and Trans.), The standard edition of the complete psychological works ofSigmund Freud (Vol. 14, pp. 237-260). London, England: Hogarth Press. (Original work published 1917). Freud, S. (1986). Some thoughts on development and regression—Aetiology. In J. Strachey (Ed. and Trans.), The standard edition of the complete psychological works ofSigmund Freud (Vol. 16, pp. 339-357). London, England: Hogarth Press. (Original work published 1917). Klass, D., & Hutton, R. A. (1985). Elisabeth Kubler-Ross as a religious leader. Omega: Journal of Death and Dying, 16, 89-109. Klass, D., Silverman, P. R., ScNickman, S. (Eds.). (1996). Continuing bonds: New understandings of grief. Taylor & Francis: Washington DC & London. Kohlberg, L. (1984). The psychology of moral development. San Francisco: Harper & Row. Kubler-Ross, E. (1969). On death and dying. New York: Macmillan. Kubler-Ross, E., & Kessler, D. (2005). On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Scribners. Myers, S. S., & Lynn, J. (2001). Patients with eventually fatal chronic illness: Their importance within a national research agenda on improving patient safety and reducing medical error. Journal of Palliative Medicine, 4, 325-332. Pattison, E. M. (1978). The living-dying interval. In C. Garfield, (Ed.), Psychological care of the dying patient (pp. 163-168). New York: McGrawHill. Schulz, R., & Aderman, D. (1974). Clinical research and the stages of dying. Omega: Journal of Death and Dying, 5, 137-143. Silverman, P., Nickman, S., & Worden, J. W. (1992). Detachment revisited: The child's reconstruction of a dead parent. American Journal of Orthopsychiatry, 62, 494-503. Weisman, A. (1972). On dying and denying. A psychiatric study of terminally. New York: Behavioral Publications. Weisman, A. (1980). Thanatology. In O. Kaplan (Ed.), Comprehensive textbook of psychiatry. Baltimore: Williams and Williams.

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Worden, J. W. (1982). Grief counseling and grief therapy: A handbook for the mental health practitioner. New York: Springer. Worden, J. W. (2009). Grief counseling and grief therapy: A handbook for the mental health practitioner (4th Ed.). New York: Springer.

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