Special Article
Hope and Hopelessness at the End of Life

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Efforts to improve end-of-life care have been hindered by widespread delays in discussing and initiating this care. The dynamics of hope and hopelessness may be crucial in these delays. The author reviews recent literature concerning hope and hopelessness at the end of life. Modern dying is more prolonged and more shaped by human choice than ever before. Therefore, hope and hopelessness play a more active role in the dying process. Hopelessness is not a simple product of prognosis, but is shaped by state and trait psychological factors. Hope at the end of life can come in various forms: for cure, for survival, for comfort, for dignity, for intimacy, or for salvation. Hopelessness at the end of life is therefore not simply the absence of hope, but attachment to a form of hope that is lost. The concept of anticipatory grief may help us interpret hope and hopelessness at the end of life. Improving end-of-life care will require looking beyond prognosis and preferences to understand the dynamics of hope and hopelessness. To be successful at diversifying hope at the end of life, we must foster the trusting interpersonal environment where this is possible.

Section snippets

Dying in the Hospital

We have not yet figured out how to effectively address these fears and significantly improve the dying process in the hospital. It appears that disseminating the best information available about medical prognoses and patient preferences does not substantially improve the quality of dying. Using these strategies, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) was unable to improve five targeted end-of-life outcomes: 1) the presence and timing of

THE VARIETIES OF HOPE AT THE END OF LIFE

Medicine and psychiatry both operate with a one-dimensional understanding of hope at the end of life, which must be overcome if we are to provide more humane dying for our patients. Medicine thinks of hope as prognosis. If hope for survival is gone, then hope loses institutional support in medicine. Hospice and palliative care provide competing perspectives, but are still out-powered and under-funded. Psychiatry approaches hope in terms of its absence, hopelessness. Hopelessness is understood

CONCLUSION: DYING WITH OUR PATIENTS

All our lives, we resist the thought that we are dying. Few of us know how to go on hoping when we are dying. Fear of dying is a normal, perhaps essential, human experience. It can be magnified or distorted in psychologically vulnerable individuals.107 By virtue of selecting medicine as a profession and being socialized for the job of saving lives, physicians may be especially unaware of their own fears of dying.108 Psychiatrists receive more training than other physicians about how their

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    This work was presented in part at the American Association of Geriatric Psychiatry Meeting, February 25, 2001, San Francisco, CA.

    The work was supported in part by NIH Grant K01 MH 1351.

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    Copyright © 2003 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.