Hazel E McHaffie

Deciding for imperilled newborns: medical authority or parental autonomy?

The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, whilst many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate.

Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe.

Representatives from eight European countries compared the legal, ethical and professional settings within which decision making for neonates takes place. When it comes to limiting treatment there is general agreement across all countries that overly aggressive treatment is to be discouraged. Nevertheless, strong emphasis has been placed on the need for compassionate care even where cure is not possible. Where a child will die irrespective of medical intervention, there is widespread acceptance of the practice of limiting aggressive treatment or alleviating suffering even if death may be hastened as a result. Where the infant could be saved but the future outlook is bleak there is more debate, but only two countries have tested the courts with such cases. When it comes to the active intentional ending of life, the legal position is standard across Europe; it is prohibited. However, recognising those intractable situations where death may be lingering and unpleasant, Dutch paediatricians have reported that they do sometimes assist babies to die with parental consent. Two cases have been tried through the courts and recent official recommendations have set out standards by which such actions may be assessed.

Mothers of very low birthweight babies: who supports them?

Delivery of a very low birthweight (VLBW) baby usually precipitates a crisis in the lives of a family, and the mothers adequacy and competence are challenged. To whom does she turn for support? Twenty-one mothers of singleton VLBW babies were interviewed on six occasions from 1 week after the birth to 3 months after the babys discharge from hospital. At each interview they were asked whom they had found most supportive. Whilst partners were generally supportive, other relatives seemed to have difficulty knowing how to help. There was a rallying to the mothers aid during the initial crisis period after the birth and again immediately after the babys discharge home but few sustained this effort during the chronic stages when the mother was tired, depressed and anxious. Though hospital staff were considered supportive for the most part, there were areas for improvement in their ability to listen empathically to the mothers own perceptions of events and behaviours which were at great variance to their own. Health visitors appeared to have real difficulties. They demonstrated a marked lack of knowledge and understanding and they were considered very unsupportive by many mothers.

The Assessment of Coping

Major methodological problems attend any attempt to measure coping. Some of these difficulties relate to the timeframe, the units of evaluation, and who should judge the effectiveness of coping behaviors. Account must be taken of factors as diverse as the social context of the individual and the balance of costs and benefits to a person as a result of adopting a given strategy. Although many instruments exist to measure aspects of coping, there is a need to lay a sure foundation in subjective assessments by patients and never to lose sight of the individuality of each person and situation. The article reports on research conducted in the Nursing Research Unit at the University of Edinburgh in which an attempt has been made to examine both measurement issues and the components that explain coping.

Community Ethics and Health Care Research

replace or supplement practical confusion, which scarcely seems an advance. The residual possibilities of conceptual analysis will then look rather disappointing to those who had hoped for more from philosophy. My sense is, happily but vaguely, that moral philosophy can do more for medical ethics than Raphael supposes, though to render that sense less inchoate than it presently is would be at the same time to come to understand moral philosophy more than I presently do.

Children, Families, and Health Care Decision-making

Over recent years in the UK there has been increasing emphasis placed on children taking responsibility for what happens to them. This American publication offers a refreshingly different view of parental and family autonomy and advocates a model of constrained parental autonomy. Ross argues that giving children rights equivalent to those of adults is “to deny them the protection they need” and render them “even more vulnerable than they presently are”. Her thesis is that whilst children should be included in the decision making process, parents should be responsible for …

The socialisation of nurses in clinical settings: a dual focus critique of a research study.

This is a two-pronged critique of a study of the socialisation of neophyte nurses in a neonatal intensive care unit in the USA. The authors, respectively an educationalist and a nurse researcher experienced in neonatal intensive care, agreed in finding that the study fell short of what it promised, but differed as to their reasons. They decided to publish their critiques as a complementary pair, in the hope that those supervising research students would benefit from seeing a disappointing study simultaneously in two perspectives, educational and clinical.