Child Refusing Treatment: Module On Management, Ethics and Law

Introduction The right to self-determination, which is the principle behind informed consent, is a basic human right and is in fact the basis for the promotion and strengthening of other human rights (Commission on Human Rights, 1984). Is this right absolute, and how does it relate to the case of refusal of treatment by a child? Refusal of treatment happens from time to time, particularly when the treatment entails patients to undergo a painful or uncomfortable process such as chemotherapy or radiotherapy, or when the treatment itself could be life-threatening, such as a surgical brain operation.  Refusal of treatment is a patient’s right, embodied in individuals’ right to self-determination, and, with some exceptions, upheld by UK laws (Family Law Reform Act, 1969; Mental Capacity Act 2005; Mental Health Act, 1992). However, when the patient refusing treatment is a child below 16 years of age, what legal and ethical guidance could medical practitioners, including nurses, turn to? The case has drawn the researcher’s interest due to the complexity of the issues at the heart of the case.  The paper will discuss the legal and ethical issues involved, in the context of nursing practice. Child Refusal of Treatment in the Context of Nursing Practice The core concept behind a patient’s refusal of treatment is informed consent, which is very important in the medical and research fields, because informed consent is necessary prior to any treatment or investigation proposed to a patient (Selinger, 2009). So crucial is informed consent that patients even have the right to refuse treatment, even if it will spell the difference between life and death (Mental Capacity Act, 2005). As crucial as this right is, it is also wrought with uncertainties. For instance, when the patient refusing treatment is a child below 16 years of age, health care providers could get confused as to the right decision to take. Decisions to allow patients to decide for themselves, even if this will be to their detriment, are normally done by general practitioners (Schermer, 2002). But due to the ever-expanding roles of nurse practitioners (BMJ, 2000; Norton and Kamm, 2002;, 2009), it may eventually fall under the purview of such nurse practitioners to decide on cases such as patient refusal of treatment.  Thus, learning about and understanding the legal, ethical, and professional issues surrounding such cases would be a good preparation for nursing practice.

Identification of Legal, Ethical, and Professional Issues in Children’s Refusal of Treatment The following issues have been identified by the researcher as pertaining to the topic of children’s refusal of treatment: 1. Ethical Issue: Is it ethical to respect a child patient’s decision to refuse treatment if it will be against their best interests? According to Gillon (1994), the four major principles of medical ethics are autonomy, non-malificence, justice, and beneficence. Of these, the principle of autonomy is at the heart of the concept of informed consent, since it is about patients’ right to self-determination – the right to determine what treatments to undergo (Schermer, 2002).  The right to self-determination gives people the right to “freely pursue their economic, social and cultural development” (Commission on Human Rights, 1984). However, if such right results in harm to the child, should the nurse allow it? Ethical principles will be used to discuss this issue. 2. Professional Issue: Do nurses have the right to go against a child patient’s decision if this is going to be detrimental for the child, based on the principle of ‘duty of care’? As nurses, we have a professional ‘duty of care’ to our patients and must promote their interests. According to the Nursing and Midwifery Council (NMC), nurses “must take reasonable care to avoid acts or omissions which you can reasonably foresee would be likely to injure your neighbor” (2008). 3. Legal Issue: In cases where a child refuses treatment which would prolong his or her life, what alternatives are open to the health care providers in order to help prolong the patient’s life?  In the UK, the patient’s right to self-determination and more specifically to informed consent, is upheld through the Mental Capacity Act (2005), which mandates that a patient’s capacity to make decisions should be assumed to be present, unless there are reasonable grounds for believing the person is not competent. Such a right includes refusal of treatment. Evaluation of Identified Issues  There is much debate and confusion surrounding this right (to informed consent), because of the exceptional cases such as where children are involved and when their decision not to accept treatment would severely affect their health and well-being (Brazier and Lobjoit, 1991). The researcher opines that the following issues are involved in the specific case of a child refusing treatment, and will discuss them as thoroughly as possible: 1. Ethical Issue: Is it ethical to respect a child patient’s decision to refuse treatment if it will be against their best interests? Teleological ethics considers the outcome of an act as the determiner of whether or not it is ethical (Wolf, 2004). An act is considered ethical, according to teleological ethicists, if it results in “the greatest good for the greatest number” (Mill, 1863), or in preventing “the greatest amount of suffering for the greatest number” (Wolf, 2004). From this perspective, respecting a child patient’s (or his/her parents’) decision to refuse treatment may be thought of as not preventing suffering for the important stakeholders in the situation. Firstly, the child concerned would suffer by their own decision, because they may die if not given the treatment. The parents would also suffer because they would lose their child if the treatment is not given. Finally, the nurse or attending physician could be harmed professionally, since they could lose their practitioner license if a court of law finds them guilty of professional negligence. Thus, teleological ethics seems to advice that a child patient’s refusal of treatment should be overruled. Deontological ethics is less straightforward. From the deontological perspective, an act is ethical only if it was done because of duty (Beauchamp, 1991, p. 171). Deontological ethicists argue that people have a duty to promote the physical well-being and moral welfare of others (Kant, 1780). If the child’s physical well-being is considered, then the nurse has a duty to override the child’s decision to refuse treatment, since this will harm him physically. However, if the treatment reduces the child’s quality of life, as in the cases of painful treatments such as chemotherapy, radiotherapy, constant injections, and other invasive treatments, then imposing on a child to accept a treatment may not be in the best interests of the child  (Kleinman, 1991, p. 1219). On the other hand, if his moral welfare is considered, then the nurse may have to respect the child’s autonomy or right to self-determination, and therefore his wish to die with dignity, which the treatment may not afford him. Deontological ethics therefore fails to provide clear guidance on the issue. 2. Professional Issue: Do nurses have the right to go against a child patient’s decision if this is going to be detrimental for the child, based on the principle of ‘duty of care’? If a nurse fails to perform care and such failure results in harm to a patient, then they could be liable for negligence (Hendrick, 2000). Thus, according to the NMC guidance, nurses could be considered to have the right to go against a child patient’s decision if this is going to be detrimental for the child (Wooley, 2005). However, referring the matter to courts of law is the safer way to overrule a child patient’s decision, since medical intervention without valid informed consent is a criminal offence and the provider can be charged with battery (MRHA guidance, 2007) In addition, according to Carrese (2006), ‘duty of care’ also involves properly informing patients of their rights and ensuring that they have the necessary information to make an informed decision. Such duty involves properly informing a patient of all the risks involved in a treatment, as well as the consequences of not taking the treatment, so that the patient could make an informed decision (Hammaker and Tomlinson, 2011). 3. Legal Issue: In cases where a child refuses treatment which would prolong his or her life, what alternatives are open to the health care providers in order to help prolong the patient’s life?  The law mandates that, when the patient is below 16 years of age, health workers would need to determine the child’s competence to decide through the Gilick test (Spriggs, 2005, p. 45). Children who do not pass the Gilick test cannot withhold or give consent, leaving that decision to their parents (Brazier, 2003, p 85). Parents are also mandated by law to make the decision on children’s behalf (Children and Young Persons Act, 2008). This means that in case parents oppose a child’s wish, this opposition has some weight on the final decision (Donna and Sarah, 2011, p. 554). Proper communication between nurses and parents is therefore needed when it comes to the final decision making (Kupfer, 1990, pp. 30). In extreme cases where both the child and the parents decide to refuse treatment, nurses could go to court in order to stop parents from making what to these providers is an unwise decision. For instance, Wooley (2005) cites Jehovah’s witness parents who refuse blood products for their children. When their decisions threaten the life of their child unreasonably, parents are no longer considered to be acting in their best interests (Wooley, 2005). Implications for Practice 1. Transformational leadership In the context of nursing management and leadership, the issue brings to mind what, the most applicable concept to the case is the concept of transformational leadership. According to Burns (1978), a transformational leader motivates the team to be effective and efficient, and effective communication is the main avenue for motivating.  Applying this concept to the case of a child’s refusal of treatment, a nurse need not go against a patient’s decision if he or she can convince the patient to make, in the nurse’s informed opinion, the right decision. The process involves communicating the benefits and risks of a treatment, and offering alternative treatments to the patient, so that they could make an informed decision. The nurse should consider that a child may refuse treatment due to the fear of the risks involved, as well as due to fear of pain. Therefore giving them enough information to make an informed decision is not only a duty, but also the morally courageous path to take. Such issue brings to mind Corley’s (2002) definition of the nurse’s role – as moral agent in the healthcare system – wherein “the patient, nurse, and organization all benefit from nurses’ acts of moral courage”.  If the nurse succeeds in motivating the child patient to undergo treatment, even if they initially refused to do so, then the nurse could be said to have applied the concept of transformational leadership, because they have communicated effectively to the patient and influenced and motivated the patient to take the right path.  The concept of transformational leadership is consistent with the principle of beneficence, which consists of activities done by the nurses and health officers to give the best care and treatment to a child refusing treatment (Irwin, 2007, p. 46). By maximizing the benefits to the child patient without forcing the child to undergo treatment against their wishes, the nurse minimizes the risks to the child (Kilpi, 2000, p. 23). 2. Contingency Approach Not all situations where a patient exercises their right to informed consent could be treated in just one way. As the discussion of the above issues demonstrates, every situation is different and thus calls for a different approach, which is what contingency theory (also called the situational approach), is all about. The contingency approach is based on the idea that there is no one best way to handle a situation (Kieser and Kubicek, 1992). The approach tells nurse leaders that there is no universal answer to any case because people and situations are different, and perhaps the best answer is “it depends”. Therefore, a technique used with one patient refusing treatment may not work with another patient. The case highlights the importance of this theory to the nurses’ work. 3. Chaos Theory The case also validates the chaos theory, first advocated by Tom Peters (1987). The theory suggests that situations and organizations become more complex over time, and therefore also more chaotic (Peters, 1987). Thus managing by controlling events, or setting limitations and rules, will not always work. Instead of trying to control our work as nurses, we therefore should strive to adjust to the complex situations and issues that our work as nurses bring to us. Conclusion The issues examined in this paper point to conflicting values of respect for patient’s autonomy and acting in their best interests or beneficence (Phelps & Hassed, 2011, p 78). It is evident that a child’s consent to medication is a delicate issue, considering that at that age, the child may not have all the facts necessary in making a conscious decision (Deci and Ryan, 1995). Thus, in order to enhance respect for children’s autonomy, there is the need for proper communication skills between the nurses and parents when it comes to the final decision making (Kupfer, 1990, p. 30). 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