Palliative medicine
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Palliative medicine · Jan 1993
Ethics and the clinician: the daily experience with motor neurone disease.
Ethical issues in health care are typically perceived as arising from extreme situations which do not usually confront the average clinician. However, knowingly or otherwise, clinicians working with motor neurone disease deal daily with ethical issues in the form of value judgements, the application of choice limiting principles and the language of clinician-patient interaction.
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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.