Chapter 20. Ethics in children’s nursing
E. Alan Glasper and Jim Richardson
LEARNING OUTCOMES
• Achieve an overview of the major ethical principles in child health care.
• Recognise how these principles can be applied in everyday child health nursing.
• Appreciate dimensions surrounding some ethical controversies in relation to research involving children.
Introduction
It might appear to the newly qualified children’s nurse that the recent history of the profession is tarnished with examples of unethical healthcare practice and violation of basic human rights. With no less than four major official investigations related to ethical aspects of childcare published since the start of the 21st century (Department of Health (DoH), 2001a and Department of Health (DoH), 2001b, National Assembly for Wales 2002,NHS Executive 2000) it can be appreciated that urgent action is necessary to restore public confidence in the NHS. However, before examining contemporary issues related to child health care it is worth remembering that it was the activities of German healthcare professionals during the years of the Second World War that finally galvanised an exhausted post-war world to do something about unethical healthcare practice and research. When the full scale of the dreadful experiments carried out on human beings, including children, against their will became fully known, perpetrators were prosecuted at the trials in Nuremberg, although not all were severely punished. In the wake of the Nuremberg trials, a code of practice was developed that became subsequently known as the Nuremberg Code (Eby 1995).
The Nuremberg Code particularly related to the ethical conduct of research. Although the elements that make up valid consent are the same in consent to research as in consent to treatment (information, capacity and freedom from coercion), research carries two extra dimensions that increase the potential vulnerability of research subjects to exploitation: (i) research may be risky and the potential benefit to the subject might be slight, unknown or absent; and (ii) the aims of the research may conflict with the therapeutic aims of treatment.
The Nuremberg code and past unethical practice
Ten key directives are highlighted, which pertain to the conduct of human experimentation. These include that:
• the voluntary consent of the human subject is absolutely essential
• the experiment should avoid all unnecessary physical and mental suffering and injury
• no experiment should be conducted where there is reason to believe that death or disabling injury will occur, except perhaps where the experimenters themselves serve as subjects
• the degree of risk should never exceed the humanitarian importance of the problem to be solved through the research (adequate facilities should be provided to protect the experimental subject from injury, disability or death)
• experiments should be carried out only by appropriately qualified persons
• human subjects should be able to terminate the experiment whenever they wish
• during the experiment, the principal investigator must be prepared to terminate the experiment at any stage if there is reason to believe that continuation is likely to result in injury, disability or death of a subject
Despite the universal condemnation of the German atrocities committed in the name of scientific progress, unethical research on human beings has, unfortunately, continued. Perhaps the most flagrant abuse of human rights during a longitudinal government-sponsored medical investigation occurred in the USA between the years 1932 and 1972 during the Tuskegee syphilis study.
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wwwYou can find out more about this infamous research at:
In the study, 399 African–American men were denied treatment for syphilis; they were deceived by public health officials who were fully aware that effective treatment was available. Such has been the damage to the US government’s reputation that it was necessary, in 1997, for the then President to issue a formal apology on behalf of the nation. Although the presidential words may have closed one chapter in the catalogue of human rights abuses, it would be naïve to believe that unethical research is currently not being conducted. A report in the Lancet (1997) revealed that the US Centre for Disease Control had supported unethical trials of new drugs for the treatment of human immunodeficiency virus (HIV), in which a placebo group of women were allowed to infect their children perinatally. These examples demonstrate the particular vulnerability of certain groups to exploitation. Children are a classic example of such a group.
The Helsinki declaration
Although the Nuremberg Code is explicit in its recommendations for healthcare researchers, the Tuskegee scandal demonstrated that harm was still being done in the name of good. The World Medical Association therefore adopted the recommendations contained in the document–Guiding physicians in biomedical research involving human subjects–at the 18th World Medical Assembly in Helsinki, Finland, in June 1964. This ‘Helsinki Declaration’ was subsequently amended several times, the last being at the World Medical Association General Assembly in Edinburgh in October 2000. Importantly, the Helsinki Declaration highlights the necessity of obtaining informed consent. Additionally, it advises caution if the research subject is in a dependent relationship with the researcher or if the individual might consent under duress. This is particularly pertinent for children’s nurses, who purport to act as advocates for the family while also contributing to the research process.
The Declaration uses the term ‘legal incompetence’, whereby physical or mental incapacity makes it impossible to obtain informed consent or when the subject is a minor. In these cases the Helsinki protocol recommends the gaining of permission from a responsible relative. Although this is advocated, importantly the gaining of consent from the child is stressed in addition to that of the minor’s legal guardian.
The UN Convention on the Rights of the Child and the Human Rights Act (1998)
The General Assembly of the United Nations adopted the convention on the Rights of the Child in November 1989; this came into force in the UK in January 1992.
Activity
ActivityRead through the summary of the Convention on the Rights of the Child. Make notes against each article on its relevance to:
• research involving children
• clinical children’s nursing practice.
When you have done this, consider to what extent the requirements of these two fields of practice differ from each other in their ethical requirements.
The UK’s second report to The UN Committee on the Rights of the Child (DoH 1999) demonstrated that considerable effort was being made to meet the UN targets. However, UNICEF suggests that the government’s 1999 report is ‘little more than an uncritical review of aspects of government policy related to children’ (UNICEF 2000).
The Human Rights Act of 1998, which came into effect on 2 October 2000, highlighted the potential of some areas of health and social care practice to affect the rights and freedoms promised under the Act. Power (2002) discusses Article 3, among others, of the Act, which relates to torture and degrading treatment or punishment and highlights the implications for child health nurses, especially when restraining children for healthcare interventions.
The implementation of these policies is beginning to impact on the way in which children are cared for in hospital and the Child Friendly Hospital Initiative spearheaded by UNICEF has been embraced by a number of children’s hospitals in the UK such as The Royal Hospital For Sick Children Glasgow.
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The four principles of healthcare ethics
Although the NMC Code of Professional Conduct (NMC 2002) provides explicit guidance on consent for all nurses, Section 3.9 discusses children in particular. Additionally the Royal College of Nursing (RCN) has issued guidelines for nurses involved with research (RCN 1977). These and other guidelines implicitly or explicitly use the four principles of healthcare ethics first proposed by Beauchamp & Childress in 1979.
1. Autonomy
The primary interpretation of this word is self-determination. The complexity of this concept is increased by its link with liberty. Personal liberty, although a common value of Western life, may have different value in other countries and other social groups, where decisions may be made by a group, such as a family, rather than espousing individual rights. Autonomy and childhood have in the past been perceived as mutually exclusive but there is now a growing awareness that children are able to make their own decisions if given information in an age-appropriate manner (Alderson 2000, British Medical Association (BMA) 2001).
When the term ‘autonomy’ is applied to contemporary healthcare practice and research the focus is on the right to informed consent (Behi 1995). Although every individual has this right, it must be appreciated that some, but especially children, may not be able to articulate this or may be prevented from doing so. The Gillick case (Gillick v West Norfolk and Wisbech AHA [1986]), in which a mother unsuccessfully challenged the legal right of doctors to withhold information about their advice and treatment of a minor from parents when it was thought to be in the young person’s best interest, was a high-water mark in the enfranchisement of children (Alderson & Montgomery 1996). Since then, children who are deemed competent in line with ‘Fraser guidelines’ are, in the eyes of the law, able to make informed choices. When this conveniently matches the decision of the healthcare professional or guardian, this inclusion in decision making is seen as an example of good practice. When it does not, the rights of the child may be diluted on the basis that adults know best. Although this paternalistic approach within both treatment and research is in decline, competent children remain a group whose rights to consent or refuse consent are easy to overlook.
In the case of younger, pre-autonomous children, respect for autonomy is shown by ensuring that parents agree to give proxy consent to treatment and research. The cases detailed below demonstrate the loving commitment of parents to the well-being of their child and their deep sense of betrayal if their child is harmed by health professionals.
