One of the most well-known models to address death and dying is the Kubler-Ross five stage theory of dying [1]. This model postulates that that people experience five distinct psychological phases at the end-of-life: denial, anger, bargaining, depression, and acceptance. This theory initially had widespread appeal because it provided a clear sequence to the experience of patients at the end-of-life. According to this theory, all people entered the process of dying in the denial phase and then progressed through the stages in the defined sequence. The only variability within the theory was the stage in which an individual might find themselves when their death occurred. According to Kubler-Ross, if the issues associated with one stage are not adequately resolved then the person would not progress to the next stage thus making it impossible to predict which stage a person would find themselves upon their death.

Corr [2] criticized the five stage theory on dying on two very important factors: 1) its sole focus on the psychological domain at the end-of-life to the exclusion of the equally important physical, social, and spiritual domains; and 2) its emphasis on defense mechanisms and responses to threat and conflict, thereby limiting its scope and ability to fully describe the multifaceted aspects of the end-of-life and dying process.

In response, Corr [3-5] proposed a task-based model for understanding four primary domains at the end of life, namely the physical, psychological, social, and spiritual domains. The underlying premise of the task-based model is at the end-of-life patients and their caregivers have tasks to attend to in these four primary domains.

The Four Task Areas of the Task-Based Theory of Dying

One of the strengths of the task-based model is that it operates from the perspective of the individual and his/her coping tasks, acknowledging that there is no one correct way of coping at the end-of-life. The task-based model is flexible enough to account for how different people focus on different areas at various times during the dying process. A second strength is that it encompasses more than just an individuals’ reaction to dying to include an awareness of events plus the individual’s efforts to cope with them, allowing for a person to be an active participant at the end of life rather than a victim of dying. This emphasis on a person’s ability to proactively engage and cope with the demands faced during the dying process is a major change from the Kubler-Ross stage model. The concept of active coping increases the patient’s opportunity to maintain a realistic sense of hope and engage in goal setting up to the final stages of the dying process. Lastly, Corr’s model includes family and caregivers. Dying is not confined merely to the individual but it affects all those who come into contact with the dying person. This model helps those caring for the dying to understand the cognitive, affective, and behavioral challenges of coping at the end of life and also accounts for patient and caregiver anticipatory grief and bereavement.

Doka [6] extends the task-based model by describing living with a life-threatening illness from the time of diagnosis to the terminal phase of the disease. General tasks for each phase include: responding to the physical fact of the disease, taking steps to cope with the reality of the disease, preserving self-concept and relationships with others in the face of the disease, and dealing with affective and existential issues created by the disease.

Taken together, the task-based approach helps professionals to view the patient as a unique and active participant in coping with issues at the end-of-life and to accept patients where they are in their coping process, rather than force them to approach death “correctly” or in a sequential manner.

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Psychosocial Issues at the End of Life: Definition, Theory, and Intervention

Modern medicine has developed effective treatments for many of the infectious and childhood illness that use to cause premature deaths, such as pneumonia, tuberculosis, diarrhea, and injury [7-10]. As such, life expectancy, which was only 47 years in the early 1900s, is currently about 75 years (77 for women and 73 for men) [7] . Now the most common causes of death are heart disease, cancer, stroke, chronic respiratory disease, injury, and diabetes [8-10]. These illnesses are more likely to be chronic conditions which reduce a person’s ability to function on a daily basis and create long-term disability.

The increase in the number of people living with chronic illnesses has created another change in our society over the past 100 years. Today nearly 50% of Americans (60% in England) live out the end of their lives in hospitals rather than at home with family [11]. Further, Americans will usually spend two or more of their final years disabled enough to need someone else to help with routine activities of daily living because of chronic illness [12].

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This phenomenon has amplified the need for end-of-life care [13] as evidenced by the more than 4,100 hospice programs in the U.S. [14]. To illustrate, in 1993 11% of all deaths in the U.S. occurred in hospice settings compared to 33% in 1995 [14-15]. As our population continues to age the need for end-of-life care will increase which will further necessitate the demand for appropriately trained healthcare providers. 

Toward that end, this course provides definitions for end-of-life and palliative care, as well as a description of the complexities associated with the development of those definitions. The data regarding common psychiatric diagnoses and their etiologies in patients who have incurable illness are reviewed. Prominent psychological theories regarding death and dying, as well as the psychological reactions which are common during the end-of-life, are discussed. Lastly, behavioral interventions which healthcare providers can employ to improve the psychosocial quality of life of patients with incurable disease are presented.

About the Author Jeff Kendall, PsyD, a licensed clinical psychologist, is the Director of Cancer Psychology at the Helen F. Graham Cancer Center and Adjunct Associate Professor of Psychology at the University of Delaware. Dr. Kendall’s clinical work and research focus on diverse cancer populations (i.e., head and neck, breast, ovarian, prostate, lung) and on issues associated with cancer survivorship.

References

1. Kubler-Ross, E. (1969). On Death and Dying. New York: MacMillan. Leman, R. (2007, March). Ninth annual report on Oregon’s Death With Dignity Act. Retrieved April 3, 2007 from http://www.odd.hr.state.or.us/chs/pas/ar-index.cfm

2. Corr, C. (1993). Coping with dying: Lessons we should and should not learn from the work of Kubler-Ross. Death Studies, 17, 69-83.

3. Corr, C. (1992). A Task-Based Approach to Coping with Dying. Journal of Death and Dying, 24, 81-94.

4. Corr, C. & Corr, D. (2000). Anticipatory mourning and coping with dying: Similarities, differences, and suggested guidelines for helpers. In Rancho, T. (eds.) Clinical Dimensions of Anticipatory Mourning: Theory and Practice in Working With the Dying, Their Loved Ones, and Their Caregivers (pp. 223-251). Champaign, Illinois: Research Press.

5. Corr, C. & Doka, K. (1994). Current models of death, dying and bereavement. Critical Care Nursing Clinics of North America, 6 (3), 545-552.

6. Doka, K. (1993). Living with Life-threatening Illness: A guide for Patients, Their Families, and Caregivers. San Francisco: Jossey-Bass.  
7. Centers for Disease Control, National Center for Health Statistics, National Vital Statistics Report, Vol. 49, No. 12, October 9, 2001.

8. Centers for Disease Control, National Center for Health Statistics, National Vital Statistics Report, Vol. 50, No. 6, March 12, 2002.

9. Centers for Disease Control, National Center for Health Statistics, National Vital Statistics Report, Vol. 50, No. 15, September, 15, 2002.

10. Centers for Disease Control, National Center for Health Statistics, Vital and Health Statistics, 13 (154,), August, 2003.

11. Singer, P. & Wolfson, M. (2003). The best places to die. British Medical Journal, 327, 173-174.

12. Crimmins, E., Saito, Y., & Ingegneri, I. (1997). Trends in Disability-free life expectancy in the United States, 1970-1990. Population and Development Review, 23, 555-572.

13. National Institutes of Health. National Institutes of Health State-of-the-Science Conference: Statement on Improving End-of-Life Care. 6-8 December 2004. Retrieved April 3, 2007 from http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm

14. National Hospice and Palliative Care Organization (2006). NHPCO’s Facts and Figures – 2005 Findings. Retrieved April 10, 2007 from http://www.nhpco.org/files/public/2005-facts-and-figures.pdf

15. Haupt, B.J., (1998). Characteristics of hospice care users: data from the 1996 National Home and Hospice Care Survey. Advances in Data, 299, 1-16.

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