Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses in the (...) process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential. (shrink)

Suffering patients (when able), grieving families and compassionate physicians have always sought the least detrimental alternative while deciding care in the face of tragedy. Modern medical technology has brought great benefits to patients but has blurred traditional concepts of life and death and created new dilemmas for practising doctors. While this technology has given doctors great control over living and dying, their dominance in critical decision making is being challenged. More and more their decisions are liable to public and legal (...) scrutiny, intense publicity by the news media and exploitation by lobbyists with opposing aims. Increasing pressure of this kind may deflect the physician form his primary responsibility to patients and their families. For infants with gross malformations or a distressing terminal illness we believe that the parents and their doctors must be allowed primary decisional power even if the chosen course of action involves the death of the infant. Choices for death should be permitted but only after suitable family and professional consultation. Some general guidelines are suggested. As these situations are so varied and so complex, much latitude in decision-making should be expected and tolerated. (shrink)

The unbridled use of modern medical skills and technology in preserving life at all costs has stimulated interest in expressing a 'right to die' by the legally competent patient who is anxious to protect his autonomy. Some recent decisions by American courts are seen to threaten this 'right to die' of competent patients and imply that legally incompetent patients including children should not have this right under any circumstances, even when expressed on their behalf by guardians, nearest relatives or parents. (...) It is argued that this is contrary to 'natural justice' as viewed by most people. It should be possible to develop procedures which are protective of the basic 'right to life' of the incompetent yet will recognise circumstances where they could be allowed to die. This paper was presented at the 1983 annual conference of the London Medical Group, 'Human Rights in Medicine'. (shrink)