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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Palliative medicine · Jan 1993
Multidisciplinary management from day one: the Neuro-care approach to motor neurone disease.
The Neuro-care approach offers a holistic, multidisciplinary, patient-centred, continuous strategy of care to unselected groups of neurological patients and their families including those with motor neurone disease (MND). The strategy for MND patients is an adapted version of one piloted on patients with Parkinson's disease. Between April 1990 and September 1992 12 MND patients were diagnosed, of whom five have died. ⋯ The maintenance of patients in the community and the lack of resort to permanent institutional care are also recorded. Ethical issues arising during the project are discussed and the problems of measuring outcomes of care are acknowledged. General conclusions for MND management are drawn.
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Palliative medicine · Jan 1993
Should hospices offer respite admissions to patients with motor neurone disease?
The provision of inpatient respite care for patients with motor neurone disease (MND) in hospices is variable. Some institutions are concerned about accepting patients who may need long-term care. Some see 'respite' care as simply a short residential stay with little nursing or medical input being necessary. ⋯ Most patients were discharged home after respite admissions and the median stay in the hospice (15 days) was identical to that of cancer patients. We conclude that respite admissions to the hospice were valuable both for MND patients and their carers. Units not currently involved in this work may wish to reconsider their position.
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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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There is considerable debate surrounding the provision of life-sustaining treatment to those unable themselves to give consent. This article examines the issues involved from a legal perspective, and discusses two proposed solutions: the 'advance directive' and the 'health care proxy'. It is concluded that a legislative framework should be set up in order to give advance directives a legal status.