Chapter 4. Practice integrity
Advocacy, ethics and legal issues
Jenny Fraser
Learning outcomes
Reading this chapter will help you to:
» explore the role of advocacy in nursing children, young people and their families
» understand the obligation to advocate for children, young people and their families
» consider the relationship between advocacy, ethics and lawful practice
» analyse ethical frameworks for nursing practice
» recognise the relevance of the United Nation’s Declaration of the Rights of the Child to nursing practice
» analyse clinical cases to integrate knowledge of advocacy for children, young people and their families, and
» critically analyse the nursing responsibilities and priorities within practice relating to families at risk, children’s rights and child protection legislation.
Introduction
Nurses working in paediatric, child and youth health settings operate within a framework that is informed by lawful scope of practice, and ethical standards. This chapter presents a review of the nurse’s role as advocate for children, young people and families, and examines this role across the landscape of children’s and youth health services.
While nursing shares the role of patient advocate with a number of other health professions, it is notable that nursing has included advocacy in its scope of practice as a fundamental role since the mid-1990s (Mallik & Rafferty 2000). The International Council of Nurses (2006b) lists advocacy as a ‘key nursing role’, and commitment is expressed through professional codes of conduct set at the domestic level (Australian Nursing and Midwifery Council 2002, New Zealand Nurses Association 1995). The International Council of Nurses (2006a) code of ethics is relevant to nursing practice in both Australia and New Zealand. There are four primary components guiding standards of conduct for nurses:
1. nurses and people
2. nurses and practice
3. nurses and the profession, and
4. nurses and co-workers.
That is, nurses are responsible for acting as advocates for the needs and welfare of patients, for the profession of nursing, and for the interests of colleagues in nursing. Nevertheless, ambiguous interpretations of the concept of patient advocacy continue to pose a number of problems for nurses in practice. Hence, an overview of what advocacy means for nurses working specifically with children, young people and their families is necessary.
Advocacy
The concept of advocacy in nursing has developed over the past three decades from two distinct sources:
1. philosophical writings, and
2. research studies.
Philosophical work and model development was begun in the late 1970s and early 1980s by American writers such as Curtin (1979) and Gadow (1980) and later by Gates (1994) and Mallick (1997a, 1997b, 1998) in the United Kingdom. Models developed from these writings essentially focused on the role of nurses in promoting patient rights and supporting self-care (see O’Connor & Kelly 2005 for a detailed review and critique of these models).
This meant that in assisting patients to exercise their rights to self-determination, nurses were obligated to provide information and support decision making led by patients. The difficulty for nurses was to disentangle dimensions of paternalism and advocacy. O’Connor and Kelly (2005) contend that this led to definitions that simply interpreted patient advocacy as information-giving by nurses and receiving by patients, and that follow-up support by nurses was not incorporated.
A number of research studies have since been conducted to progress the earlier theoretical work by analysing nurses’ experiences and perceptions of advocacy (Mallik, 1997a), 1997b, 1998, Mallick & Rafferty 2000, O’Connor & Kelly 2005). This body of research has helped to conceptualise advocacy in nursing with some consensus beginning to emerge (Jezewski 1993, Mallik & Rafferty 2000, O’Connor & Kelly 2005).
In their recent study of Irish nurses, O’Connor and Kelly (2005) were able to identify two important elements fundamental to understanding patient advocacy:
Specifically, clinical advocacy occurs at a proximal level to the nurse–patient relationship, with nurses acting on behalf of patients regarding healthcare or treatment options, whereas organisational advocacy is more distal. Organisational advocacy involves nurses acting on behalf of patients at a systems level, influencing healthcare options from which they can benefit. Thus, advocacy extends the nurse–patient relationship by integrating the healthcare system. The nurse then mediates or interprets the system as required. This framework attempts to facilitate patient autonomy.
While it may not be possible to offer a precise definition of patient advocacy as it applies to child and youth health nursing practice, it is important to elicit key elements of the concept, including:
» children’s rights and healthcare
» decision-making frameworks, and
» ethical decision making and informed consent.
This chapter highlights implications for clinical nursing practice throughout, and then provides more specific reference to child protection legislation influencing nursing practice. Advocacy in the context of therapeutic relationships with children, young people and their families is then considered.
Human rights, child rights and advocacy
The United Nations Declaration of the Rights of the Child (United Nations 1989) sets international standards for protecting the interests and rights of children. The Convention was adopted by the United Nations in 1989 and has been ratified in all but two countries (Somalia and the United States) to date. Australia ratified the convention in 1991, followed by New Zealand in 1993. Despite rights being upheld in legislation, standards and policy, in practice they are not always assured and individual nurses need to advocate for the rights/needs of children, young people and their families at all levels.
Relevant international human rights laws include the child’s right to medical treatment located in Article 3 of the Universal Declaration of Human Rights, which provides that ‘everyone has a right to life’, and Article 12(1) of the United Nation’s International Covenant on Economic, Social and Cultural Rights, which recognises ‘the right of everyone to the enjoyment of the highest attainable standard of physical and mental health’ (cited in Breen 2006 p. 48). Article 19 of the Convention (United Nations 1989) goes further and obligates state parties to intervene to ‘protect the child from all forms of physical and mental violence, injury or abuse, neglect or negligent treatment’ (cited in Breen 2006 p. 49).
Of particular importance in relation to nursing children and young people is that we accept that individuals have the right to make informed choices about the care they receive. Article 13(1) provides that:
‘The child shall have the right to freedom of expression; this right shall include the freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers …’ (United Nations 1989).
At the same time, advocacy usually means supporting children and young people in the context of their parents’ rights and obligations to protect the child. In more recent times, the importance of parental autonomy in child healthcare delivery and decision making has posed the problem of advocacy versus paternalism for nurses practising within a family-centred framework. Advocacy is made more complex when we accept children’s rights as paramount. The child’s degree of autonomy and capacity to consent to treatment determines their ability to exercise their rights (Breen 2006). As children grow older and develop decision-making skills, their right to consent to treatment and research participation must be respected (Breen 2006).
Practice implications
There is growing support for models of nursing care that are patient-centred. Within paediatric, child and youth health nursing settings, the term ‘family-centred care’ describes this individualised focus of care. MacKean et al. (2005) argue that family-centred care emerged as best practice in children’s health settings from the widespread interest in patient advocacy, citing hospital visiting rights for parents as one outcome of the advocacy movement.
The child (and the nurse) must rely on parents making such treatment and other healthcare decisions based on the child’s best interests, as they are recognised as having the authority to act on behalf of the child (Breen 2006). It is therefore important to review models of family-centred care that emphasise training of parents to assume responsibility for care and decision making and move towards truly collaborative relationships between families and nurses.
Advocacy for children, young people and their families extends beyond shifting care responsibility back to families, and requires strategies for the development and maintenance of ongoing collaborative engagements. A key feature of this collaboration is the ability to negotiate plans for care and treatment. The case study in Box 4.1 is designed to illustrate the principles of advocacy in the context of family-centred care. You are encouraged to engage with the related activities.
Box 4.1
A 6-year-old girl, Rebecca, is admitted to the paediatric ward for ongoing surgical treatment to correct congenital talipes. Her mother says that she needs to get back home to care for her other three children and will be back to visit Rebecca in a few days.
1. Reflect on the qualities and skills required to advocate for this family in the practice setting.
2. Consider the advocacy role in relation to the interests and needs of:
(a) the child
(b) the parent, and
(c) the family.
The opportunity for collaborative decision making between the parent and the nurse in this activity at first appears limited. As previously mentioned, collaborative decision making, autonomy and independence are not based on shifting responsibility for care. Rather, consideration is given for the best interests of the family and child.
Decision-making frameworks
Where children cannot consent to participate in treatment or research that will benefit them, either personally or for others, they rely on adults to protect them and to act in their best interests. Children’s welfare, meaningful informed consent and respect for patients must therefore be upheld in both treatment and research activities (Diekema & Stapleton 2006). Issues surrounding children and young people’s consent to medical treatment will now be examined, followed by those related to children and research.
Using a developmental approach, increasing responsibility is afforded to children in healthcare decisions as they mature. Children in Australia, for example, may assent (voluntarily agree) to treatment or to participate in research before legal autonomy, but it is their parents who must give consent. Box 4.2 provides the guidelines for age-of-majority legislation across Australian jurisdictions.
Box 4.2
In most jurisdictions, pursuant to age-of-majority legislation, the age of majority is 18. Beyond that age, people can make their own medical decisions in the same ways as any other adult. In New South Wales and South Australia, the age for making medical decisions is 14 and 16 respectively (Minors (Property and Contracts) Act 1970 (NSW), section 49). A person who gives medical or dental treatment to a person under the age of 16 is protected from liability if a parent or guardian has consented; a practitioner who performs medical or dental treatment on a person 14 years or older with the consent of that person is similarly protected from liability. In South Australia, under the Consent to Medical Treatment and Palliative Care Act 1995 (SA), section 6, a person 16 years of age or older may make decisions about their own medical treatment as validly and effectively as an adult.
Adolescence is a particularly challenging developmental stage as young people move towards the autonomy of adulthood. Parental duty to protect the child gives way to the young person’s ability to make independent decisions competently (Larcher 2005). Consent for clinical treatment must be adequately informed and freely given by a competent individual. Parents thus have legal power to consent on behalf of the young person if deemed not competent. Difficulty arises when the young person is competent and either refuses treatment or seeks treatment against the wishes of the parents. Interestingly, Breen (2006) argues that, during the past decade, New Zealand’s government and judiciary have succeeded in placing children’s rights before those of parents. Breen cites a number of cases related to that country’s obligations as a State Party to the Convention on the Rights of the Child to uphold Article 6, for example, recognising that ‘every child has an inherent right to life in stating that parties should ensure to the maximum extent the survival and development of the child’ [1996] NZFLR 670, 671, and using provisions pertaining to ‘the right to life in Article 6(1) of the International Covenant on Civil and Political Rights’ [198] NZFLR 998, 1000–01, 1003 (cited in Breen 2006 p. 46).
Another fundamental principle in relation to consent to medical treatment is termed ‘Gillick competence’, which is based on the House of Lords ruling inGillick v West Norfolk Area Health Authority 1985 (cited in Breen 2006 p. 54). The Gillick principle holds that some children are legally competent to consent to medical treatment. This ruling only applies to medical treatment that has clear potential for direct benefit to the health of the child. Thus, a ‘Gillick assessment’ may be used to determine whether a child is ‘of sufficient age, maturity and understanding’ to consent to medical treatment (Balen et al. 2006 p. 32). In Australia, the law is clear that a child can give legally informed and effective consent to medical treatment using a Gillick assessment, although it is not obligatory. Indeed, it is still argued that Australian law is inadequate in upholding children’s rights to medical treatment without parental consent (see, for example, www.hreoc.gov.au/legal/guidelines/submission_michael.htm).
Decision making about the treatment of children and young people is influenced by the values, beliefs and attitudes of the individuals involved. It is important that nurses:
» recognise power inequity in the relationship between parents and the healthcare agency or institution
» enact their role as advocate
» facilitate children’s and parents’ decision making
» advocate for the child
» assist parents in identifying options consistent with their values, and
» clarify their own values, beliefs and attitudes, and thereby recognise their own biases and potential for influencing parents.
Nevertheless, problems of terminology leave the child at risk, as they are open to interpretation. For example, the concepts of ‘best interests’ and ‘informed consent’ are problematic. Moreover, the definitions of child and young person are subject to the various laws in each relevant jurisdiction. Again, the nurse as advocate can play a pivotal role in making sure that risks are reduced and child rights are upheld.
Consider when parents will not give consent for full and complete immunisation for their children as recommended. According to Diekema (2005), there are three important considerations for the healthcare professional:
1. Does this constitute medical neglect and thus reportable neglect?
2. How high is the risk of harm to others?
3. What is the best response?
Diekema (2005 p. 1429) suggests:
» Assess the decision-making framework of the parents.
» Address any misinformation or miscalculation of risk versus benefit.
» Acknowledge risk and the potential for harm, placing it in the context of harm versus benefit.
» Respect the decision (with exception).
Practice implications
The case study in Box 4.3 poses a number of sensitive issues for the school health nurse. On the one hand, the nurse has a responsibility to respect the rights of this child and provide the necessary information and health advice. On the other hand, there is also a duty to uphold the parents’ responsibility to protect their child. At the same time, young people have a right to access information and health promoting advice.
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