Palliative medicine
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Palliative medicine · Jan 1993
Coping with motor neurone disease--an analysis using self-regulation theory.
Medicine and environmental changes have had tremendous success in controlling the infectious diseases that were the major causes of death in the last century. However, the consequential extension of life has been accompanied by an increase in the number of persons living with and dying of chronic illness. ⋯ Such diseases have a high prevalence in the population and self-detection and self-management are critical to the treatment and control of chronic disease and disability. This paper examines how people cope with motor neurone disease and sets this in the context of earlier research on psychological aspects of chronic disease and current theoretical approaches to coping with long-term ill health.
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There are many difficulties of communication with patients with amyotrophic lateral sclerosis (motor neurone disease). In France, most physicians have a policy of keeping the fact of this diagnosis from both patients and relatives. This paper describes an alternative approach based on open communication, and applies that principle to handling issues of communication associated with various aspects of four different topics: the diagnosis itself, the development of handicap, swallowing difficulties, and respiratory difficulties.
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Taboos, whether held by professional carers, patients or families have the capacity to influence a whole range of choices that must be made during the course of any illness. In the case of motor neurone disease, decisions regarding if, when and how to break bad news, the place of care (home, hospital or hospice), the introduction of aids and devices, and, ultimately, choices regarding the place of death, will all be influenced by a range of taboos. ⋯ In discussing taboos, essentially what is of concern is attitudes. A basic change in attitudes is required if we are to stop viewing patients with incurable illness as some kind of medical failure.