Critical care decisions in fetal and neonatal medicine: ethical issues
The family and the role of professionals
3.12 In this section we give an overview of the emotional and practical adjustments that families make as they reconcile their expectations with reality. When a woman or a couple embarks on a pregnancy it is generally a time of great anticipation. Parents are often very distressed to discover before or after birth that their baby has a major problem that may severely limit his or her potential for the future. Widely publicised improvements in neonatal care may lead them to have mistaken or unrealistic expectations of the likelihood of their child surviving without disability (see paragraph 3.26). Many of the parents of babies in neonatal care or intensive care will have experienced a complicated pregnancy, labour or birth. In other cases, early delivery may have occurred spontaneously with little or no warning and patients may have had little time to consider a prognosis or to prepare themselves. The baby they had imagined and had looked forward to holding may not resemble the baby whom they see in the intensive care cot or the incubator. They may be beset by uncertainty and fear for the future. There have been numerous studies identifying parental stress in the neonatal unit that have shown that parents can feel helpless, confused, frightened, angry, isolated and guilty. Their feelings are sometimes heightened by grief for the loss of the expected healthy child or anticipatory grief at the thought of their baby dying.25 These are very difficult circumstances in which to ask parents, as well as for doctors and nurses, to make decisions about critical care. The consequences of decisions about the critical care of a baby may extend far beyond the hospital, especially if he or she has a severe condition which leads to disability (see Chapter 7). Often the implications will be lifelong for the child and their families, raising issues of healthcare, education and social welfare. Sensitivity and understanding are therefore crucial professional requirements.
3.13 Nurses play a crucial role within the neonatal intensive care setting, and in the decision-making process. They are the healthcare professionals who spend the most time with babies and their parents, helping them to feel and act as normal parents as much as possible in the difficult environment of the neonatal unit. They deliver treatment and closely monitor a baby’s responses and are the primary source of information and support for parents. Through their close, frequent contact with parents, nurses learn about their values, beliefs, attitudes
and customs and will actively encourage parents to participate as much as possible in a baby’s daily care. Neonatal nurses can serve as advocates, helping parents to articulate what is important to them or helping other members of the healthcare team to appreciate the parents’ perspective. Additionally, nurses assess parents’ physical and psychosocial needs and can refer parents to the appropriate resources within the healthcare system, liaising with other members of the team and facilitating communication. Their special knowledge of a baby and his or her family is essential for making critical care decisions and they may be directly involved in the discussions, although this practice varies between neonatal units.26They have a professional responsibility to ensure that the rights and interests of a baby and his or her family are respected and that parents are given the information and support necessary to participate fully in decisions about their baby.27 Neonatal nurses implement many of the decisions that are made to provide or withdraw life-sustaining treatments and are experts in the prevention and management of pain (see paragraphs 6.14–6.16).
3.14 Understanding the family’s perspective is critical for the professional not only to be able to offer support and guidance when it is required but also to reconcile their own emotions should the family come to a different decision about the critical care of their baby than the one that a healthcare professional would have made. The professionals may or may not have received special training about how to deal with this situation. Some units have multidisciplinary meetings where differing views on a baby’s care can be discussed, others provide access to individuals with special expertise, whereas some do not provide any formal processes for family or staff support. This variability contrasts sharply with other areas of neonatal practice, where monitoring and discussion occur regularly between neonatal units to ensure continuing improvements in quality, for example in infection control or resuscitation skills. The Working Party noted that healthcare professionals are likely to need specific training to help them understand the perspectives of parents faced with critical care decisions and to communicate effectively with them. This training could also help doctors and nurses reconcile decisions that are different from the choices they would have made for themselves.
Making decisions: the perspective of parents
3.15 The question of parental involvement in decision making about the care of the fetus or the newborn baby who has, or is likely to develop, serious health problems and disabilities is extremely important. In suggesting that there are several factors which influence parental decision making, we recognise that detailed sociological research would be required to assess their relative impact on the process. Some of these factors concern the parents’ reproductive history, which may involve experience of a previous premature birth or the loss of one or more of the fetuses in a multiple pregnancy. If the mother has previously had a termination of a pregnancy, the grounds on which she did so may have a bearing on decisions about her new child. The father or the mother may have children with a previous partner, and hence have divided parenting responsibilities. A couple who had difficulties with conceiving or had experienced miscarriage, stillbirth or loss of a child or children may be initially much more concerned about a baby’s survival than his or her prognosis.
3.16 Decision making may also be affected by expectations of family life. If both the mother and the father are new to parenthood, they are likely to have no prior experience of ‘normal’ childbirth and parental responsibilities. They may therefore have quite idealised views of what to expect. The parents may already have been planning to have further children or may now decide that this is what they intend. If they have older children, parents might worry about the impact of having a new child who has disabilities. They may feel obliged to take the welfare of their other children into account in decision making. In the short term at least, parental attention may be displaced towards the new child. Parents may wonder if they should involve their other children in care giving which in some cases may entail a lifelong commitment.
3.17 The attitudes and experiences of parents and their wider families towards pain, suffering, vulnerability, disability and death, and the influence of spirituality,28including any religious beliefs, will also have a bearing on decision making (see also paragraphs 3.23–3.24). The birth of a severely ill newborn baby in a family may undermine, strengthen, confuse or clarify preconceived notions about family ties. The actual effects in a particular family are unpredictable. Individual family members may be influenced, for example, if they have relatives or friends with disabling conditions; they may react in different ways at different points in their lives. Disagreement may occur within the family, for example, between parents, between parents and their immediate family, and between other family members. Broader social attitudes and expectations often come into play when family members find themselves directly involved in decisions about withholding or withdrawing medical treatment for another family member.
3.18 Over the past five years, the Internet has contributed to a significant change in the way that people communicate and make decisions about healthcare. There are far more opportunities to seek other views and opinions on a child’s condition, and families who have never met each other and who are geographically many miles apart, can communicate readily. Parents sometimes form support networks or pressure groups through which they may receive help and/or channel their experiences to assist others.29
Making decisions: the relationship with healthcare professionals
3.19 We agree with professional guidelines which advise that parents and the team of healthcare professionals should, wherever possible, jointly decide on the most appropriate treatment for a baby (see paragraphs 2.16 and 2.45 and Appendix 9). Achieving truly collaborative decision making depends greatly on the nature of the relationship between these parties. A number of sociological studies have explored what is meant by ‘lay’ knowledge, beliefs and experiences, and examined health and illness as it is experienced by the individual and the family.30 However, there remains a need to gain a deeper understanding of the process of shared decision making in the medical context.31The perspective of the family contrasts with that of the health professional, for whom the illness is the focus of their knowledge of the patient. Both are influenced by their own health status, as well as their knowledge, experience and expectations.32 Research has shown that families are generally more positive about a baby’s health problems than the neonatal doctors and nurses who provide his or her care. Furthermore, as they grow up, children who develop disabilities report a more positive outlook than their carers (see paragraphs 5.37 and 7.9). It is therefore particularly important that stereotypes or prejudices against states of disability are not fostered during the decision-making process.
3.20 Interactions between professionals and parents take place within a broader social context that includes the nature of medical knowledge,33 the notion of expertise,34 relationships between healthcare professionals, and between them and other groups.35 In the UK, the medical profession is aware that its image has changed in the public’s mind in recent years. Patients are now more likely to question the judgement of healthcare professionals than they were in the past. Although there is a perception that this change in behaviour may have led to an increase in the level of disagreement over critical care decisions, there is a lack of robust evidence to support this view. There is also potential for conflict between different healthcare professionals. For example, there may be disagreement between obstetricians and neonatologists, and between neonatologists and paediatricians, as well as between doctors and nursing staff or managers.37
3.21 The influence of social factors upon decision making in the particular context of neonatal medicine has been subject to relatively little systematic research. We consider that research in this area has potentially valuable practical applications. It could provide an evidence base to explain the variations in practice and their consequences, assist the identification of good practice, and aid understanding of the issues which arise when clinical teams and parents have different views. It would also provide an evidence base for identifying and applying effective change in practice and for dispute resolution.
25 O’Shea J and Timmins F (2002) An overview of parents’ experiences of neonatal intensive care J Neonat Nurs8: 178–83.
26 Hurst I (2005) The legal landscape at the threshold of viability for extremely premature infants: A nursing perspective, part II J Perinat Neonat Nurs19: 253–62.
27 National Association for Neonatal Nurses (1999) Position Statement #3015: NICU Nurse Involvement in Ethical Decisions (Treatment of Critically Ill Newborns)(Glenview, IL: National Association of Neonatal Nurses); Nursing and Midwifery Council (2002) Code of Professional Conduct(London: NMC).
28 Spirituality has been defined as a concern with matters of the spirit (or essence) of a person, involving a sense of connection to a much greater whole. It is a belief system that may be experienced as an alternative to religion or as an expression of personal faith within religion.
29 In a study in the USA, 56% of users of the Internet said that it had helped their relationships with family members, and 38% of users said that it had helped the way they obtained health information. See Pew Internet & American Life Project (2005) Trends 2005: Internet: the mainstreaming of online life, available at:
http://www.pewinternet.org/pdfs/Internet_Status_2005.pdf, accessed on: 25 Jan 2006.
30 For example, see Nettleton S (1995) The Sociology of Health and Illness(Cambridge: Polity Press); Annandale E (1998) The Sociology of Health and Medicine(Cambridge: Polity Press).
31 For further information, see Greenhalgh T and Hurwitz B (1998) Narrative Based Medicine(London: BMJ Books), p 259.
32 Pal DK (1996) Quality of life assessment in children: a review of conceptual and methodological issues in multidimensional health status measures J Epidemiol Community Health50: 391–6.
33 Foucault M (1976) The Birth of the Clinic(London: Tavistock).
34 Freidson E (1986) Professional Powers(London: University of Chicago Press).
35 Parsons T (1975) The sick role and the role of the physician reconsidered Health Soc53: 257–78; Illich I (1976) Limits to Medicine (London: Marion Boyars).
36 Royal College of Physicians (2002) NHS Day – Commentary on the NHS from the President, available at: http://www.rcplondon.ac.uk/news/news.asp?PR_id
37 Brown SD, Truog RD, Johnson JA and Ecker JL (2006) Do differences in the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists positions on the ethics of maternal-fetal interventions reflect subtly divergent professional sensitivities to pregnant women and fetuses? Pediatrics117: 1382–7; McHaffie HE and Fowlie PW (1996) Life, Death and Decisions: Doctors and nurses reflect on neonatal practice(Cheshire: Hochland and Hochland (now Elsevier)). A recent study indicated that different professional groups perceive outcome for extremely premature babies differently and that this may affect their willingness to use interventions at borderline viability. See Chan KL, Kean LH and Marlow N (2006) Staff views on the management of the extremely preterm infant Eur J Obstet Gynecol Reprod Biol 128: 142–7.