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This paper is an attempt to set out some of the issues which the RCN Council Nursing and Ethics Sub-committee has discussed recently with regard to nursing involvement in the care of patients who have been classified as being in a vegetative state, particularly in the event that the withdrawal of treatment is under consideration. It aims to encourage nurses to debate this issue openly and contribute their views.
The decision to withdraw or withhold life supporting treatment in moribund patients is difficult under any circumstances. When the patient becomes incompetent to clarify their wishes regarding continued maintenance in long-term facilities, surrogates sometimes cannot agree, further clouding the issue. We examine a case where the State's interests come into play, forcing a controversial resolution.
Two cases of maternal vegetative state after motor vehicle accidents are presented. Aggressive support allowed the prolongation of both pregnancies into the third trimester without neonatal compromise. After initial medical stabilization in intensive care unit environments, both patients were treated in a labor and delivery setting with consultative supports from various subspecialists.
This article sets out how a case like that of ms. Schiavo is likely to be decided in a Dutch court and compares that with the law in the United States. In the Netherlands there is one case with striking similarities: the decision of the Arnhem Court of Appeal of 1989. After describing that case (which to a large extent still reflects the legal state of the art), comments are given on several aspects of the issue, such as the labelling of artifical feeding as a medical intervention, the role of the physician, the position of the proxy or surrogate, the ways to resolve dispute in case of conflict, and the significance of advance directives. The analysis will show that, although there is more consensus on the issue now than there was 16 years ago, there are still several questions that need to be addressed in the future.
The reflections put forward in this text concern the clinical and practical difficulties posed by the existence of patients in PVS, and the essential ethical issues raised, combining these ethical questions with practical and theoretical experience. Section 1 presents the methodology of the ethical reflection as we see it. Section 2 describes the clinical condition of patients in PVS. Section 3 develops the ethical difficulties relative to PVS from the French point of view. Section 4 illustrates the relevance of debating the ethical significance of such problematic situations, whilst defending a practical position based on a philosophical conviction. Section 5 points out the limits of ethical reflection in a biomedical context, and calls for reflection closer to the source of the problems described. For a comprehensive appraisal of biomedical rationality, the final section suggests combining the bioethical debates with traditional philosophical ethical reflection so as to get a clearer understanding of the real, if limited, relevance of these debates.
The article briefly analyzes the concept of a person, arguing that personhood does not coincide with the actual enjoyment of certain intellectual capacities, but is coextensive with the embodiment of a human individual. Since in PVS patients we can observe a human individual functioning as a whole, we must conclude that these patients are still human persons, even if in a condition of extreme impairment. It is then argued that some forms of minimal treatment may not be futile for these patients; they may constitute a form of respect for their human dignity and benefit these patients, even if they are not aware of that. Moreover, it is important to consider the symbolic significance of care: while many believe that PVS is a kind of imprisonment, for others providing food and fluids is the only way to testify our proximity to these persons. The best policy would be to provide, as a general rule, artificial nutrition and hydration to PVS patients: this treatment could be withdrawn, after a period of observation and reflection by the family and proxies, on the basis of the proxies' objection to the continuation or of the patient's advance directives specifically referring to this situation.
Previously, the cognitive recovery of a 26 year old woman, Kate, who developed a severe encephalomyelopathy and was in a 'minimally conscious/persistent vegetative state' for 6 months was reported. After 6 months, Kate began to respond to her environment and, at 2 years post-illness, neuropsychological assessment indicated that Kate was functioning within the normal range on tests of general intellectual functioning, executive functioning and most memory functions (with the exception of visual recognition memory). Although Kate has a severe dysarthria necessitating the use of a communication board and severe physical disabilities that require her to use a wheelchair, she has demonstrated an almost complete cognitive recovery and is among a tiny percentage of minimally conscious patients to do so. This single case report describes the emotional factors central to Kate's rehabilitation. Using a newly developed model of cognitive rehabilitation as a framework, the pivotal role that emotional and psychological factors played in Kate's adjustment to the consequences of her illness and the role of psychotherapeutic intervention in facilitating this adjustment are discussed.
We developed a new rating scale, Kohnan Vegetative Score, to measure severity and small clinical changes in vegetative state patients. It has 7 items corresponding to the conditions of vegetative state by Japanese Society of Neurosurgery: motor function, food ingestion, urination and defecation, eye movement, vocalization, communication, and facial expression. Each item is rated in 5 ordinal categories: slight (score = 1), mild(2), moderate(4), and extreme(5). The sum of the scores is used as the summary score, which ranges from 7 to 35, and high score means 'severe'. We examined the reliability and the factorial structure of the Kohnan Vegetative Score. The subjects were 10 patients who met the conditions of vegetative state. Four neurosurgeons rated the subjects, and then 2 of them repeated the rating after one week interval. As a measure of reliability, the (weighted) Kappa coefficient proposed Cohen (1960, 1968) was calculated for each item, and the intraclass correlation coefficient (ICC) was calculated for the summary score. To analyze the factorial structure, the factor analysis was carried out. The minimum and the maximum weighted Kappa values were 0.44 and 0.64 for intra-rater reliability, and 0.37 and 0.69 for inter-rater reliability, respectively. Concerning the factorial structure, the contribution of the first factor was 91.5% which indicated the unidimensionality of the scale. The ICC's estimate for the summary score were 0.90 (95% C.I.: 0.766-0.970). On the basis of these results, the Kohnan Vegetative Score has unidimensionality and high reliability enough for a practical use.
This study reports on the case of a young woman who, at the age of 26, developed a severe encephalomyelopathy and was in a vegetative state or minimally conscious state for 6 months. She showed a sleep-wake cycle, but no evidence of cognitive functioning. Six months after her illness, she began to respond to her environment and eventually returned home to the care of her parents, with regular periods of respite care in a home for people with severe physical disabilities. She remains in a wheelchair with a severe dysarthria and communicates via a letter board. Two years after her illness, staff at the home requested an assessment of her cognitive functioning. On the WAIS-R verbal scale and the Raven's Progressive Matrices, the woman's scores were in the normal range. So too were her recognition of real versus nonsense words and her memory functioning (apart from a visual recognition memory test which was in the impaired range). Although she enjoyed the tests, she became distressed when asked about her illness and previous hospitalization. She was reassessed 1 year later, when there were few significant changes in her test scores but she could talk about her illness and hospitalization without becoming distressed. She was angry, however, about her experiences in the first hospital. Further tests suggested good executive functioning. In short, this woman's cognitive functioning is in the normal range for most tasks assessed, despite a severe physical disability and dysarthria, and despite the fact that she was vegetative for 6 months. Although some recovery following 6 months of being vegetative/minimally conscious is not unknown, it is rare, particularly for those with non-traumatic injuries, and the majority of people similarly affected remain with significant cognitive deficits. This client has, by and large, made an almost complete cognitive recovery. She feels positive about her life now and says the formal assessment showed people she was not stupid and this made her happy. The paper concludes with the young woman's own comments and views about what happened to her and her present feelings.
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A total of 24 patients with clinical evidence of brain death (n = 17), severe coma (n = 2; GCS approximately 3) and apallic syndrome (n = 4) underwent a comparative investigation with 99mTc-HMPAO brain scintigraphy, EEG, auditory and somatosensory evoked potentials. Accompanied by EEG and evoked potentials, brain scintigraphy enabled confirmation of cerebral death in 15/17 patients. In one case clinical examination and evoked potentials suggest brain death, but cerebral perfusion and EEG were normal ("brain stem death"). One patient with evidence of cerebral death in clinical examination, brain scintigraphy and evoked potentials, showed questionable focal EEG activity; however, autopsy revealed intravital autolysis of the entire brain. All patients with apallic syndrome and deep coma showed a distinct cerebral perfusion, but gross EEG abnormalities; evoked potentials were delayed or absent. Planar scintigraphy with 99mTc-HMPAO appears to be superior to neurophysiological techniques discriminating patients with agonal cerebral dysfunction from those with brain death.
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