Care Giving as an Occupational Role in the Dying Process

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Cynthia L. Reid, PhD Jon K. Reid, PhD

ABSTRACT. Being involved in the death and dying process as a professional, family member, friend, or patient means taking on an occupational role that will impact one’s life. Types of occupational roles associated with death and dying, and how these roles influence the participants, are explored in relation to concepts presented in the Model of Human Occupation. Also addressed is the potential for a care-giving role to bring on distress in the form of role imbalance or role changes, or because of inability to adequately fulfill the role. Suggestions for seeking relative balance within and among roles are presented. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: [email protected] com ]

KEYWORDS. Care-giving, death, dying, occupational roles, Model of Human Occupation

An occupational role is comprised of routine behaviors necessary to accomplish a set of expectations accompanying accepted responsibilities (Cara & MacRae, 1998). Occupational roles reveal what someone Cynthia L. Reid is a Registered Occupational Therapist (OTR) and a Certified Health Education Specialist (CHES), Assistant Professor, School of Occupational Therapy, Texas Woman’s University, PO Box 425648 Denton, TX 76204-5648 (e-mail: [email protected]). Jon K. Reid is a Licensed Professional Counselor (LPC), a Licensed Marriage and Family Therapist (LMFT), and a Grief Therapist (CGT) certified by the American Association for Death Education and Counseling. He is also Associate Professor and Chair, Department of Psychology and Counseling, Southeastern Oklahoma State University, Durant, OK. Occupational Therapy in Health Care, Vol. 12(2/3) 2000 E 2000 by The Haworth Press, Inc. All rights reserved.

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values, how time is spent, and require the use of specific skills. In this way, occupational roles make a significant contribution to a person’s identity by representing who a person is and what a person does. Being involved in the death and dying process necessarily puts one into an occupational role embedded in care giving. Taking on the occupational role of a caregiver means that one values the care being given and/or the person to whom care is given. A caregiver must necessarily devote a proportion of his/her time to the giving of care. In addition, the care-giving role provides opportunity to develop and share skills in interpersonal contact and communication.

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TYPES OF OCCUPATIONAL ROLES Care-giving roles can take on many forms. Professional caregivers may include medical and rehabilitation personnel, clergy, and personal assistants. Family members often perform much of the routine care and supervision of professional caregivers. Friends may want to help by visiting, running errands, bringing meals, or offering respite to family member caregivers. The dying also have occupational roles involving self-care associated with the illness. Sometimes the illness itself becomes the focus of one’s existence, thus becoming a patient and acquiescing to the sick role occurs. If this is part of the grief process and occurs as an act of acceptance and compliance with medical needs, it may be beneficial for the dying person. However, if it progresses to an invalid role too early in the illness and reflects an attitude of hopelessness, it may be a signal for intervention to prevent unnecessarily rapid decline (Kielhofner & Burke, 1985). The appropriateness and timing of acceptance may be difficult to judge, as everyone involved in the dying process will grieve at different rates, and varying beliefs about death and dying bring different perspectives about how one is expected to behave (Kubler-Ross, 1969). Another choice of occupational roles for the dying person is one of survivor. This self-care role focuses on creating and living a healthy lifestyle to maximize potential for good days and create comforts and strength for the bad days. Family members and close friends may also self-identify as survivors in the presence of a dying loved one, and then in the absence of their loved one after the death has occurred.

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ORGANIZING FUNCTION OF OCCUPATIONAL ROLES Kielhofner and Burke (1985) support the idea that occupational roles taken on as a result of the death and dying process will function as an organizing force in the lives of all those involved. Occupational roles are influenced by values, motivation and interests (volition), they will establish patterns for routine behavior (habituation), and are supported by skills (performance). Volition. The occupational roles in which one chooses to participate are driven by the volitional system. One chooses to become a caregiver because the role is deemed important, or because the person to be cared for is important to the potential caregiver. In addition, caregivers must be motivated to fulfill this role either through a sense of desire (‘‘I do this because I want to’’), duty (‘‘I do this because I need to or ought to’’), or obligation (‘‘I do this because I have to, it is expected of me’’). And the role is taken on because, at some level, the caregiver believes it can be done (self-efficacy). Habituation. Habits can be influenced by both past activity and anticipated roles. Current acquisition of roles and habits determines how, where, and with whom time is spent. For caregivers, past roles have played a part in the development of values (for example, beliefs regarding death, or perceived responsibilities of family members) and the development of skills (activities such as food preparation, wound care, or assisting with hygiene). Anticipated roles for the future may influence the use of time by suggesting preparatory roles (such as taking on the role of student so that one can become a professional caregiver). However, only those roles in which a person is currently engaged have a direct organizing influence on one’s present behavior. Performance. A variety of skills are necessary to competently perform any role. Physical skills are needed to maneuver, manipulate, and communicate. Care-giving may require carrying items to and from the patient, helping the patient in and out of bed, driving the patient to appointments, making the bed, and similar chores. Cognitive skills are needed in the form of knowledge, reasoning, and problem solving capacity. These skills may be compromised if the caregiver is personally impacted by anticipatory grief (Rando, 1997; Worden, 1991). Making it difficult to assist in maintaining a prescribed medication routine, calculating the patient’s caloric intake, or deciding when it may be necessary to call for additional help. Reid and Dixon (in press)

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assert that those with greater grief symptoms appraise themselves as less effective in problem solving. Psychological skills are essential for dealing with emotional difficulties of one’s own and those of the dying person. Care giving offers an opportunity to establish a close bond, even in professional relationships. There is a strain associated with knowing that an important relationship is time limited. Social support can be beneficial to all those involved in the dying process. In addition, social skills are required for interaction among patient, family, friends, and professionals.

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POTENTIAL FOR DISTRESS Role Imbalance. Poor performance in any of these role functions can create role imbalance and bring on stress and related dysfunction. If there is a lack of value, motivation, or interest in care giving it must be counteracted by a volitional strength in order for the participant to be able to maintain enough drive to perform the occupational role. If sufficient habits to support the role are not in place, steady dependable participation is at risk. If the skills necessary to adequately do the job are deficient, then satisfactory role performance is not likely. If self-efficacy is low or skewed, then role performance is similarly doomed. Role Changes. The mere presence or absence of a role can have an edifying or distressing affect on a person. Role loss is a common threat to the dying which can be extremely distressing. A person who is dying often loses roles associated with work, leisure, and even selfcare. After a death, caregivers experience the loss of the care-giving role, at least for that person. Role interruption can be a problem in death and dying situations. Caregivers may have to temporarily give up other roles in order to attend to the needs of the dying or their survivors (Doka, 1993). Care giving may be a new role; coping with a dying family member is certainly new to everyone at some time in their lives. Anticipating a new role after an illness or death can offer a sense of hope and a goal for the future, such as having more time for leisure pursuits or family. Anticipation can also involve dread and be a source of distress, especially related to making funeral arrangements, executing a will, taking care of survivors, or paying bills (KublerRoss, 1969; Worden, 1991).

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Disability. The temporary or permanent inability to perform a role function due to illness, disability, or a dysfunctional state can be extremely distressing (Doka, 1993; Kastenbaum, 1998). To be unable to perform one’s own self-care can lead to feelings of despondence, despair, or devastation. To be depended upon to fulfill a care-giving role, then suddenly find oneself unable to perform this function can bring on feelings of guilt related to betrayal or abandonment.

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SEEKING RELATIVE BALANCE Caregivers need to realize the importance of taking good care of themselves. Caregivers, who exhaust all their energy until there is nothing left to give, have forfeited their usefulness. Being attentive to one’s own sense of relative balance between positive and negative aspects of role functioning will enable those in care-giving roles to take steps toward personal health and well-being so they can be effective in their care of others (Williams & Moretta, 1997). Balance Within a Single Role. When an individual struggles with internal conflicts related to an occupational role, such as care giving, it may be worthwhile to take an inventory of the positive and negative aspects involved. For example, if a sense of obligation is the only motivation for being a caregiver, feelings of resentment or guilt could arise every time a role performance is required, thus complicating one’s grief (Rando, 1993). But identifying a positive focus, such as the value of the relationship and how important that person is, may help to offset negative feelings. Establishing a routine with built-in rewards could counteract negative perceptions about the role. Reading a favorite magazine or book to the patient might be enjoyable for both parties. Visiting the newborn nursery whenever a trip to the hospital is necessary could provide the emotional lift necessary to keep the caregiver’s spirit up. Concentrating on specific skills being used in the care-giving role as a way to enhance or display performance may create pleasure in the tasks at hand. For example, if cooking is an enjoyable task, then cooking up healthy recipes which will strengthen the patient and taste great may be rewarding. The key is finding a positive aspect of the role on which to focus. Balance Within Multiple Roles. The threat of burnout among caregivers is strong. Even with the most positive attitudes toward a care-

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giving role, the task threatens to be draining (Kubler-Ross, 1969). Having other roles that are energizing will help to counteract this effect. Because of the necessarily outward focus of care-giving, of being on the giving end of a relationship, it may be important to engage in other roles which allow an inward focus, doing something just for oneself, and/or allowing oneself to receive from others. Regularly spending time in enjoyable pursuits not associated with the caregiving role can enhance well-being. If the care-giving role is one in which there are few gains in the health or well-being of the patient, and to maintain a status quo signifies a good day, then consider taking on a role in which progress is evident, where the future looks bright rather than dim. Consider helping someone learn to read, redecorating a room, planting a garden, or building a birdhouse. Such activities serve as healthy distractions, are growth oriented, and give the caregivers something other than the care-giving role to discuss with others. Look for balance between roles that are solitary and those that are social. It may be that care giving involves being in the midst of many others, so alone time may be restful and welcomed, but social roles that do not revolve around grief may also add to a sense of well being. If care giving tends to isolate the caregiver as well as the patient, then seeking opportunities for both to socialize would be beneficial. Survival Tips. For a caregiver that is sick, personal health must be a primary concern. Loss of one’s own health will compromise one’s effectiveness as a caregiver. Say ‘‘no’’ to roles that are not a priority. Accept help in whatever form it presents itself. Recognize the need for balance and actively seek it out. And finally, accentuate the positive aspects of being involved in the lives of those who experience death and dying (Callanan & Kelley, 1992; Kubler-Ross, 1969). SUMMARY Professionals, family members, and friends have the potential to take on occupational roles associated with care-giving during the dying process leading up to, and surviving beyond, the death of a patient or loved one. The occupational role of being a caregiver is guided by values and ideals, supported by routines and habits, and enabled by performance skills. The care-giving role serves as an organizing influence on the care-giver’s life, but presents a risk for distressing factors

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such as imbalance, change, and/or dysfunction. Seeking personal balance within and among simultaneous roles is an important task to master and continually practice. Successful care giving is dependent upon the carefully orchestrated health and well being of the caregiver.

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REFERENCES Callanan, M., & Kelley, P. (1992). Final gifts: Understanding the special awareness, needs, and communications of the dying. New York: Bantam Books. Cara, E., & MacRae, A. (1998). Psychosocial occupational therapy: A clinical practice. Albany: Delmar Publishers. Doka, K. J. (1993). Living with life-threatening illness: A guide for patients, their families, and caregivers. New York: Lexington Books. Kastenbaum, R. J. (1998). Death, society, and human experience (6th edition). Boston: Allyn and Bacon. Kielhofner, G., & Burke, J. P. (1985). Components and determinants of human occupation. In G. Kielhofner (Ed.), A model of human occupation and application (pp. 12-36). Baltimore: Williams & Wilkins. Kubler-Ross, E. (1969). On death and dying. New York: MacMillan Publishing Co., Inc. Rando, T. A. (1993). Treatment of complicated mourning. Champaign, Illinois: Research Press. Rando, T. A. (1997). Living and learning the reality of a loved one’s dying: Traumatic stress and cognitive processing in anticipatory grief. In K. Doka & J. Davidson (Eds.), Living with grief when illness is prolonged (pp. 33-50). Washington, DC: Hospice Foundation of America/Taylor & Francis. Reid, J. K., & Dixon, W. A. (in press). The relationship between grief experience, problem-solving appraisal, and depression among a college-student sample: An exploratory study. Journal of Personal and Interpersonal Loss. Williams, C., & Moretta, B. (1997). Systemtic understandings of loss and grief related to Alzheimer’s Disease. In K. Doka & J. Davidson (Eds.), Living with grief when illness is prolonged (pp. 119-132). Washington, DC: Hospice Foundation of America/Taylor & Francis. Worden, J. W. (1991). Grief counseling and grief therapy: A handbook for the mental health practitioner (2nd edition). New York: Springer Publishing Company.

Care giving as an occupational role in the dying process.

Being involved in the death and dying process as a professional, family member, friend, or patient means taking on an occupational role that will impa...
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