Critical care decisions in fetal and neonatal medicine: ethical issues
Consequences of decision making
3.27 We now turn to describe the immediate practical issues for parents when they take their baby home from the hospital. We then examine what is meant by disability and quality of life.
Practical issues on leaving hospital
3.28 If a baby with a severe condition survives and is discharged from hospital, the ability of a family to manage at home is likely to be a major source of concern. We have noted that the interests of a baby are bound up with those of his or her parents and that the availability of resources affect those interests (see paragraph 2.29). Although not universal, many neonatal units now have community liaison teams to give some support to parents and families when their baby is discharged home. The majority of babies who have required intensive care will have a discharge plan which is developed during their stay in the neonatal unit. Many will be discharged with complex medical requirements such as a continuing need for oxygen therapy or special feeding needs. Very premature babies who have been treated on a ventilator are at risk of chronic lung disease. Once they no longer need the ventilator, support to the lungs may still need to be provided by continuous positive airway pressure (CPAP), and oxygen therapy. Recovery sometimes takes several months and if a baby is otherwise well, he or she may be allowed to go home with an oxygen supply. Most babies with chronic lung disease gradually improve and no longer need oxygen by 12 months of age. We consider longer-term issues of health, education and social welfare in Chapter 7.
What is disability?
3.29 Decision making in the critical care of the fetus and the newborn baby requires an understanding of the possible consequences. This is why deciding how to act in the best interests of a baby with serious medical problems demands some thought on what people perceive as ‘disability’ and how clinical views on a baby’s health relate to the social framework in which families function. Over the past decade there has been a growing interest in the experience and the politics of disability, including studies that challenge the distinctions drawn between impairment and disability (see Glossary).45Various definitions of disability are currently in use. The Disability Discrimination Act (DDA) 1995 defines a person as having a disability if:
“...he has a physical or mental impairment that has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities” (see also paragraph 7.26).
Attention has been drawn to the issue of how the social organisation of everyday life (for example the design of buildings, transport, social security systems and employment legislation) has ‘disabled’ those with physical impairments. Estimates using the widest definition suggest that there are approximately 11 million disabled adults in the UK (i.e. one in five of the total adult population) and 770,000 disabled children.46 Many of these people would not define themselves as disabled because their impairments have a low impact on their lives. This contemporary understanding of ‘disability’ means that discussions of disability in the specific context of the long-term future of severely ill babies must pay close attention to the relationships that will be available to that person, and broader social provision.
3.30 The social value and meanings attributed to notions of disability and impairment, and therefore to the very term ‘disabled’, are rooted in broader social, cultural and religious attitudes towards humanity. These meanings and values also derive from philosophical and historical conceptions of what it means to live a ‘good life’. Striving for a ‘good life’ goes beyond the professional obligation upon health practitioners to do no intentional harm to their patient. The DDA 1995 and 2005 aim to protect disabled people from discrimination in every aspect of their lives, including access to health, education and social care as well as community facilities and commercial services. The Disability Rights Commission has actively promoted the rights (and potential) of disabled people to be equal citizens. Attitudes towards disability have changed markedly over the past decade and opportunities have increased. In 2006, the Government appointed a new National Director for Learning Disabilities, or ‘tsar’ for learning disabilities, who has a learning disability herself.47We return to the question of health, educational and social care for those with disabling conditions in Chapter 7.
3.31 Modern sociological thinking agrees that disability should no longer be viewed simply as something that resides in the body of a person and which has to be coped with by him or her and their family, in isolation. This concept remains an ideal given the current realities of discrimination and the lack of resources (see Chapter 7). Studies on the ethics of care (see paragraph 2.3) and the sociology of emotions have found that notions of burdens and of dependence are highly relative terms. Most of us are interdependent with other people, regardless of whether or not we or they have impairments.48 The main findings arising from research on the ‘sociology of the body’ are that terms such as ‘impairment’ and ‘normal’ and ‘abnormal’ also have to be understood within a wider social context.49Disabled people, their families and many researchers tend to refer to this ‘social’ model of disability rather than the ‘medical’ model, which is embedded in much of the medical literature describing outcomes after neonatal intensive care.
3.32 Many disabled people feel that portrayals by the media do not reflect the reality of their lives. This was demonstrated by a survey which analysed over 1,000 national and local press cuttings covering disability and disabled people over an eight week period in 1999. There were over 800 occurrences of pejorative terms. The terms used most frequently were ‘suffer’ and ‘suffers’, but these terms do not reflect accurately the perceptions of disabled people about themselves.50 It was also observed that the achievements of disabled people often went unreported.
3.33 These examples show why it is important that accurate information is provided for pregnant women and for parents of newborn children about the nature and prognosis of the conditions of which their baby is at risk. There have been concerns about the adequacy of arrangements for informing parents about the disabilities that their baby is likely to develop, and his or her additional needs.51 In 2000, the Department of Health and Department for Education and Skills published joint guidance for parents and professionals (Together from the Start).52 This guidance identified several barriers to effective decision making at the time of early diagnosis. These include parents’ perceptions of a lack of sensitivity, misunderstandings about the implications of a diagnosis, and the subsequent impact of a disability or health need on a child and his or her family. Some of the existing definitions of disability can be particularly insensitive, especially when it is not clear whether the child will develop disabilities or what the longer-term future might be. A template for good practice in discussing early identification, diagnosis and management of a disability or other special needs developed by the charity SCOPE in 2003 was rapidly adopted, disseminated and further developed in partnership with paediatric and other child health services and partners in health, education and the voluntary sector.53
3.34 It was apparent from a number of parents of young disabled children, consulted on behalf of the Working Party, that they dread any suggestion that their child is ‘blocking’ a bed and may interpret any advice about withdrawal of treatment or changes in regime as a judgement that their child is ‘not worth treating’.54A crucial question for parents in this situation is what quality of life their child can expect, given individual circumstances. The approach taken by professionals in conveying the prognosis and in particular, paying attention to attitude and language used, can help parents greatly. For example, doctors refer to ‘withholding or withdrawing’ treatment, but parents might prefer ‘changing the treatment’, ‘reassessing the treatment’ or ‘reorienting the goals of care’. Honesty, understanding, tact and timing were considered to be crucial considerations. These parents wanted a sense of the future and how their child could reach his or her full potential. They could also feel very isolated and appreciated personal support.55
Quality of life
3.35 The concept of ‘quality of life’ is a fundamental issue which arises when making critical care decisions (see paragraph 2.9). In simple terms, a person’s quality of life refers to their emotional, social and physical wellbeing, their intellectual capability, and their ability to perform the ordinary tasks of living within a community. Critical care decisions will often have an impact on quality of life for both a baby and their family. People have different opinions about what constitutes a ‘good’ quality of life; indeed, disabled children often consider their quality of life to be good (see also paragraph 3.19). However, it isvery difficult to judge the quality of life experienced by a very ill, newborn baby for whom a long-term prognosis may be unclear. Evidence of the extent of physical disability may not begin to appear until a baby is a toddler, and the full extent of learning and behavioural problems may not be experienced until he or she is well into school age. Currently it is difficult to assess the quality and variety of support that is available for children and families who need it or the impact on the quality of life of the parents. Parents often experience real difficulties in obtaining information about the social care or support available to them in the community, and how to access it (Chapter 7).56
Footnotes45 Barnes C, Mercer G and Shakespeare T (1999) Exploring Disability: A sociological introduction(Cambridge: Polity Press).
46 Prime Minister’s Strategy Unit (2005) Improving the Life Chances of Disabled People.
47 Department of Health (2006) Press release: Government announces appointment of new learning disabled tsar, available at:
http://www.gnn.gov.uk/environment/fullDetail.asp?ReleaseID
48 Bendelow G (Editor) (1998) Emotions in Social Life: Critical themes and contemporary issues(London: Routledge).
49 Shilling C (2003) The Body and Social Theory, 2nd Edition (London: Sage).
50 Scope (1999) Stop Press!, see Stop Press! – an overview, available at: http://www.scope.org.uk/issues/media_stoppress.shtml, accessed on: 22 Sept 2006.
51 Scope (2003) Right from the Start Template: Good practice in sharing the news.
52 DfES and DH (2003) Together from the Start: Practical guidance for professionals working with disabled children (birth to third birthday) and their families.
53 Scope (2003) Right from the Start Template: Good practice in sharing the news.
54 Personal communication, Dr Philippa Russell.
55 Russell P (2005) Information from a consultation group for the Early Support Programme.
56 Scope (2003) Right from the Start Template: Good practice in sharing the news.