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Caregiving at the End of Life

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The Sociology of Caregiving

Part of the book series: Clinical Sociology: Research and Practice ((CSRP))

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Abstract

The majority of Americans (60–70 %) die in a hospital where the culture is oriented around prolonging life and curing disease. Also, hospitals are costly. Nonetheless, many people want to control the way death happens for themselves and their loved ones. Hospice is growing in its use among the public and among physicians, but only 25 % of Americans who died in 2000 were under hospice care at the time of death. The average length of time patients remain in hospice care is about 3 weeks, too short to experience the array of services available for their care. Caregiving at the end of life can follow one of three trajectories. Some patients die suddenly, others experience a steady decline, and others have a long period of illness, interspersed by crises, one of which proves fatal. The demands on family caregivers differ in duration and intensity. Sometimes a caregiver’s adaptability is taxed to the degree that they become ill and even die before the person whom they are caring for. Caregivers experience both positive and negative effects of caregiving. Preventing caregiver burnout or compassion fatigue are common experiences of caregivers. Signs and symptoms of burnout are offered to minimize burnout. The process of grieving and healing from long-term caregiving takes time.

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Notes

  1. 1.

    Also see, Buchwald (2006). Also, Albom (1997).

  2. 2.

    See President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1978–1983). Library of Congress card number 81-600150. Superintendent of Documents, U.S. Government Printing Office, Washington DC.

  3. 3.

    According to McWebb (1997) an environment for a good death has the following ten things in common: (1) open, ongoing conversation; (2) preservation of the patient’s decision-making power; (3) sophisticated symptom control; (4) limits are set on excessive treatment; (5) a focus on preserving patient quality of life; (6) emotional support; (7) financial support; (8) family support; (9) spiritual support; and (10) the patient is not abandoned by the medical staff even when curative treatment is no longer required.

  4. 4.

    See the excellent, helpful Caregiver Handbook, The Four Stages of Caregiving (Stage 1 Getting Started; Stage 2 Finding Help; Stage 3 Heavy Care and Stage 4 Letting Go) available to download and print from Area Agency on Aging of Paseo-Pinellas, Inc. at http://www.agingcarefl.org/caregiver/fourStages/toc.

  5. 5.

    Also see Lynn (2005).

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Authors and Affiliations

  1. Department of Sociology, Northern Arizona University, Flagstaff, Arizona, USA

    John G. Bruhn

  2. Department of Sociology, University of Maryland, Princess Anne, Maryland, USA

    Howard M. Rebach

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  1. John G. Bruhn
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  2. Howard M. Rebach
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Correspondence to John G. Bruhn .

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Bruhn, J., Rebach, H. (2014). Caregiving at the End of Life. In: The Sociology of Caregiving. Clinical Sociology: Research and Practice. Springer, Dordrecht. https://doi.org/10.1007/978-94-017-8857-1_10

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