Magazine article Humane Health Care International

Infusions of Soul: A Vital Resource in Life-Threatening Illness

Magazine article Humane Health Care International

Infusions of Soul: A Vital Resource in Life-Threatening Illness

Article excerpt

A recent article and editorial in the Journal of the American Medical Association (JAMA) highlighted critical problems in the management of life-threatening illness. Since dying and death have almost no place in medical education, the substantial shortcomings in the care of seriously ill and dying patients are not surprising. Physicians are expected to pilot their patients all the way from birth to death, but their education emphasizes keeping life aloft at all costs, and hence they learn little about the art of soft landings at the appropriate time and place. So for many of our patients the end of the life journey often comes as a surprise, and the often disastrous "crash landings" are emotionally and financially devastating.

The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT) followed several thousand hospitalized patients suffering from life-threatening illnesses. (1) The study documented poor pain control, neglect of "do not resuscitate" (DNR) orders, poor planning for the future, and excessive use of technology. Moreover, it cited the physicians' serious failure in communication with patient and family. Even when a well-trained nurse from the study gave emotional support to patients and families, arranged meetings, documented facts and feelings, and generally attempted to catalyze improvement in the management of the situation, none of these deficiencies was significantly reduced. The editorial in the same edition of JAMA (2) offered no solutions, and the author was content to suggest that the organization and culture of the hospital need to change, and that physicians need to overcome serious communication problems. Just so, but why is communication so poor, and how will the hospital culture change?

To address these questions, it is necessary to reflect on the inner worlds of the hospital and all who enter therein. If it is to thrive, the inner world of the individual (the soul) requires connectedness, communication, and love during times of life-threatening illness. The hospital is a rational, functional place designed for diagnosing, fixing, and replacing, and, in this chilly environment, the soul is mute. To become a place where communication is honored, where the patient feels loved and cared for and connected to all that helps him/her heal, the hospital needs an infusion of soul. This infusion requires much more than the usual application of paint and other cosmetics, which initially look appealing; also the nabobs of industrial medicine may not embrace this unusual prescription because, apparently, they do not see "soul" as cost-effective. Change will begin when physicians recognize the need for communication and care of the soul. When they change, the hospital will change.

In their training, physicians are taught little about the deep, personal, soulful aspects of life-threatening illness and dying, particularly their own, and so, in these situations, might well be at a loss for words. The occasional lecture on death and dying, and a few useful phrases are no preparation for these confrontations with impermanence, which may evoke a sense of failure in physicians as well as profound discomfort when they find themselves unable to "do" something.

During the 16 years that I worked full time in a hospice with the dying and their families, it became clear to me that, when time is short and all the pomp and circumstances with which we invest and occupy our lives is peeled away, we are confronted undeniably by the impermanence of life, and crave, before it is too late, touch, forgiveness, and the expression of love. …

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