The aim of this article is to generate knowledge about parents’ participation in life-and-death decisions concerning their very premature and/or critically ill infants in hospital neonatal units. The question is: what are parents’ attitudes towards their involvement in such decision making? A descriptive study design using in-depth interviews was chosen. During the period 1997-2000, 20 qualitative interviews with 35 parents of 26 children were carried out. Ten of the infants died; 16 were alive at the time of the interview. The (...) comparative method (grounded theory) was used to analyse the data. The analysis was carried out continuously and in parallel with data collection. Six categories were revealed by the analysis: indecision and uncertainty (ambivalence); information and communication; participate, but do not decide; seeming to be included; the parents’ child; and individual consideration. The findings appear to indicate that parents agree that they should not have the final word in decisions concerning their infants’ future life or death. Such a responsibility would put too heavy a burden on parents who lack the medical knowledge and the professional experience needed to make such a decision, and would be likely to lead to them experiencing strong feelings of guilt. The findings show that parents should be well informed and listened to during the whole decision-making process. Their primary concern was how nurses and physicians communicate with parents who are experiencing a crisis, and how this serious information is presented. (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

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. (shrink)

(2011). Life and Death Choices in Neonatal Care: Applying Shared Decision-Making Focused on Parental Values. The American Journal of Bioethics: Vol. 11, No. 2, pp. 35-36.

Objective: To analyse the process of end of life decisions in a neurosurgical environment.Methods: All 113 neurosurgical patients, who were subject to so called end of life decisions within a one year period were prospectively enrolled in a computerised data bank. Decision pathways according to patient and physician related parameters were assessed.Results: Leading primary diagnoses of the patients were traumatic brain injury and intracranial haemorrhage. Forty-five patients had undergone an emergency neurosurgical operation prior to end of life decision, N = (...) 69 were conservatively treated, which included intracranial pressure recording, or they were not offered neurosurgical care because of futile prognosis. N = 111 died after a median of two days. Two, in whom the end of life decisions were revised, survived. Clear decisions to terminate further treatment were made by a senior staff member on call being informed by the senior resident on call , difficult decisions on the basis of extensive round discussions , and very difficult decision by an interdisciplinary ethical consult . Decisions were further substantiated by electrophysiological examinations in N = 59.Conclusion: End of life decisions are to be considered standard situations for neurosurgeons. These decisions may reach a high rate of “positive” prediction, if substantiated by electrophysiological examinations as well as on the grounds of clinical experience and respect for the assumed will of the patient. The fact that patients may survive following revision of an end of life decision underlines the necessity for repeated reassessment of these decisions. Ethical training for neurosurgeons is to be encouraged. (shrink)