Critical care decisions in fetal and neonatal medicine: ethical issues
The wider socio-legal context
3.22 We have seen that there are a number of ethical frameworks available to help parents and healthcare professionals come to decisions about the critical care of the fetus or newborn baby. While ethical approaches are crucial to the resolution of dilemmas in neonatal critical care, emotional influences and personal experiences can also be highly pertinent, as we have seen above. For those involved in decision making, certain paradoxes that exist within the wider socio-legal context may add complexity. For example, the legal distinction between a fetus and a newborn baby (see paragraph 8.13) is at odds with the teachings of many faiths based on the scriptures and some people’s moral intuitions. In another example, the late termination of pregnancy is permitted in the UK for a ‘serious fetal handicap’, yet once an affected baby is born, healthcare professionals often strive very hard to keep him or her alive, highlighting the “different moral status we accord to [fetuses and] neonates even of the same gestational age” (response to our consultation from the RCPCH). Another paradox concerns the prohibition of discrimination on grounds of a disabling condition, while there is inadequate social provision for the growing child and his or her family, or for when the child becomes an adult (see Chapter 7). An additional complicating factor for those involved in decision making is that what may have been judged as morally acceptable in the past may be inconsistent with current standards. For example, in certain circumstances doctors with good intentions may actively have hastened death. This occurred in the UK in the 1970s when doctors followed the criteria developed by Dr John Lorber for babies with spina bifida.38 In general, attitudes today have changed. The use of the Lorber criteria was discontinued when evidence became available that early surgery and physiotherapy could give an affected child a good quality of life. Even today, outside the UK, doctors and midwives may not always consult the family or other professionals before acting to withdraw treatment from newborn babies.39
3.23 Historically, much of the original moral argument about decision making for a newborn baby in critical care in the UK was informed by the Judaeo–Christian tradition. Although the population in the UK is often said to be more secular than in the past, spirituality remains an important part of the lives of many people. As the diversity of our society has increased, so has the influence of other religious traditions and cultural beliefs. In addition, each person brings their own set of presuppositions, held consciously or subconsciously, consistently or inconsistently, about the basic constitution of the world.40While ethnicity, and other non-religious cultural factors that contribute to diversity, undoubtedly add complexity to decision making in fetal and neonatal medicine, evidence from empirical studies is lacking.41 However, we do know that orthodox religious beliefs have led to disagreements between families and healthcare professionals that have had to be resolved in the courts (see Chapter 8).
3.24 During the course of its deliberations, the Working Party held a workshop with people representing different faiths (see Appendix 1) to learn about advice that would be given to parents and doctors needing to make decisions in critical care. There was marked commonality between the different religious approaches, especially in relation to making the best interests of the child a fundamental principle. The value that predominated was that of compassion for both the child and the parents. There was also recognition that each situation was different and would require a sensitive interpretation of religious principles.42The value of providing access to a religious counsellor or chaplain during periods of critical care decision making for parents with religious faith was acknowledged. While all attendees placed a high value on the sanctity of life (see paragraph 2.9), most faiths counselled that life need not be prolonged at all costs, for example in situations when treatment was futile or the pain and suffering for the child were greater than any benefit potentially gained from continuing medical intervention. Equally, all were agreed that every child had value in the eyes of God, meaning that disability in itself was not a reason for discounting the value of a God-given life.
3.25 Some of the issues discussed in this Report receive regular and widespread media coverage. It seems possible that some reporting, for example in the form of television programmes, could affect public perception of the medical problems. Research on the effects of the media on public perception in other health-related areas has been undertaken by the Glasgow University Mass Media Unit.43One particular study examined the press and television treatment of issues arising about mental health. The findings showed how ill-informed public beliefs on, for example, the association of schizophrenia with violence, could be traced directly to accounts in the media. Another study on coverage by the media on a range of scientific issues revealed that people were aware of the main themes but the knowledge that they had assimilated usually reflected those aspects that had received the most persistent coverage.44
3.26 Cases of extreme prematurity tend to receive a great deal of attention in press coverage, especially in newspapers and magazines. Numerous articles feature ‘miracle babies’ who survive despite being born extremely prematurely, but seldom address the implications for these children’s future development, and for the lives of their families. This coverage tends to give a misleading impression that most babies born at the borderline of viability are healthy, whereas in reality, many do not survive and those who do often have disabling conditions ranging from mild to severe (Table5.1). Reporting by the media of decision-making processes and the reasons for disputes may also be misleading. This is because those cases in which court proceedings are used as a means of resolving disputes between parents and doctors tend to make headline news, whereas those that are resolved privately do not.
Footnotes38 In the UK in the 1960s, Dr John Lorber developed criteria for the selective non-treatment of infants with severe spina bifida and hydrocephalus. Infants who met two or more of these criteria were not offered an operation but were sedated with chloral hydrate and fed on demand. Infection such as ascending meningitis was not treated with antibiotics. These infants usually died within weeks. The ‘Lorber criteria’ became well known in the UK and were widely accepted by paediatricians as being a humane way of reducing suffering. Lorber J (1972) Spina bifida cystica Results of treatment of 270 consecutive cases with criteria for selection for the future Arch Dis Child47: 854–73; Lorber J (1971) Results of treatment of myelomeningocele. An analysis of 524 unselected cases, with special reference to possible selection for treatment Dev Med Child Neurol 13: 279–303.The practice of active ending life in severely ill newborn infants in the Netherlands is described in Box8.2.
39 Cuttini M, Nadai M, Kaminski M etal. (2000) End-of-life decisions in neonatal intensive care: physicians’ self-reported practices in seven European countries Lancet355: 2112–18.
40 This is sometimes known as a ‘worldview’: a particular philosophy or view of life.
41 Culture has been defined as “a constellation of shared meanings, values, rituals and modes of interacting with others that determines how people view and make sense of the world”.
42 We note that individual members of a faith group may interpret their faith differently from their religious leaders when making decisions.
43 See the website of the Glasgow University Mass Media Unit, available at: http://www.gla.ac.uk/departments/sociology/units/media.htm.
44 Hargreaves I, Lewis J and Speers T (2003) Towards a Better Map: Science, the public and the media(Swindon: ESRC).