Etiske dilemma ved behandling av ekstremt premature barn – et perspektiv fra habiliteringsfeltet

Abstract

Background. The aim of the study was to explore habilitation workers’ opinions on ethics and extremely premature infants. This has, to my knowledge, not been studied in Norway before. The experiences of these professionals have received less attention than the field deserves.

Material and methods. I interviewed eight habilitation workers, as a part of a qualitative study. A modified systematic text condensation (after K. Malterud) was used for the analysis.

Results. Initially, habilitation workers said that they did not experience any ethical dilemmas in their daily work, since they themselves never had to make decisions between life or death. But after some consideration they could give examples of specific ethical challenges in their work. First of all they thought the health system did not fulfil their commitment to the extremely premature children. Health care had saved the lives of these children, but the habilitation programme did not provide the right level of support later on. This became a negative influence on the quality of life for the children and their parents. They also thought that within their field there was too much focus on the parents regarding information and autonomy and that it was important to include the children to a larger degree.

Interpretation. Habilitation workers initially thought that they did not have ethical dilemmas in their work. This can imply a too narrow conception of what medical ethics comprises. They had concerns for the children they met and their families, because they felt they did not get proper help. Children are a vulnerable patient group, and habilitation workers came forward as the guardians of the children’s rights and needs.