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• Moral choices in end of life care for children by Susan Stringer. Dated September 2013 | Volume 12 | Number 7
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Stringer, S. (2013). Moral choices in end of life care for children. Cancer Nursing Practice, 12(7), 27-32 6p
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Art & science | ethics
Moral choices in end of life care for children
Susan Stringer outlines different ethical stances and how they relate to the decision whether to discuss treatment with an 11-year-old patient
End of life care is fraught with difficulties and ethical dilemmas, which are even more problematic in the case of children (Royal College of Paediatrics and Child Health 2004). Although many of the issues encountered are often unavoidable, they can be emotive (Garrard 2009). Common issues include the management of pain and other distressing symptoms, uncertainties about the future, psychosocial, emotional and spiritual concerns, and providing compassionate support for children and their families. Parents may face heart-breaking dilemmas, such as whether to continue aggressive life-sustaining treatments, which may result in unbearable suffering; or allow their child to die. This article explores a case study of an 11-year-old boy with lymphoma to illustrate the ethical considerations of the decision-making process involved in his care. Three ethical issues – beneficence, autonomy and veracity – that are pertinent to the case study and that might need to be considered when providing end of life care
to children are discussed. The main elements of each of these ethical issues are examined and their implications for clinical practice are appraised. Healthcare workers should not only acknowledge the importance of good end of life care, but should also recognise the different types of ethical issues that may arise. To put these ethical debates into context, it is necessary to establish definitions of palliative care and ethics, and consider their fundamental philosophies and perceptions. Palliative care In 1986, the World Health organization (WHo) defined palliative care as: ‘The active total care of patients whose disease is not responsive to curative treatment.’ WHo stressed the importance of controlling pain and other symptoms, and psychological, social and spiritual problems, to achieve optimum quality of life for patients and their families. Ahmedzai et al (2004) expressed concern that this definition of palliative care could be construed as ‘relegating palliative care to the last stages of care’. The provision of palliative care is not restricted to those with incurable disease; consequently the original WHo definition has been revised (WHo 2002) to include problems associated with ‘life-threatening illness’, emphasising the need to introduce palliative care earlier on in the disease process. other tenets of palliative care specified by WHo (1986) include the intention to ‘neither hasten nor postpone death’, so that dying is seen as a normal process. A further document was produced to take into account the comprehensive needs of children (WHo 1998). The aim of palliative care is to reduce physical, psychological and spiritual suffering. This is
Susan Stringer is Macmillan head and neck nurse specialist, Sherwood Forest Hospitals NHS Trust, Mansfield, Nottinghamshire
Date of submission January 12 2013
Date of acceptance March 7 2013
Peer review This article has been subject to double-blind review and checked using antiplagiarism software
Author guidelines www.cancernursingpractice.co.uk
Abstract This article aims to demonstrate the extent to which end of life care for children raises moral dilemmas. It considers a case study of an 11-year-old boy with lymphoma, examining the considerations of the decision-making process involved in his treatment and drawing on various aspects of the scenario to illustrate and discuss different choices.
Keywords Autonomy, beneficence, children, end of life care, ethical issues, justice, non-maleficence, veracity
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endorsed by the department of Health’s (2008) End of Life Care Strategy, which recognises the many challenges faced in meeting the needs and preferences of people approaching death. difficulties are inevitably encountered in the provision of end of life care, with people’s views differing significantly, so a good understanding of ethical principles is imperative. Such principles provide a guide for healthcare professionals about their duty, responsibilities and conduct, and give a firm foundation on which to base their decision making. Ethics To contextualise the ethical themes raised by the case study (see panel below), it is necessary to explain what is meant by the term ‘ethics’. It has been described as ‘the study which arises from the human capacity to choose among values’, and is oriented to what is ‘right, fair, just or good; about what we ought to do’ (Preston 2007) or, more specifically, the ‘study of the process for determining the best course of action in the face of conflicting choices’ (Rushton 2001). The oxford dictionaries (2013) definition of ethics is ‘moral principles that govern a person’s behaviour or the conducting of an activity’ or ‘the branch of knowledge that deals with moral principles’. It is generally held that ethical deliberation necessitates sound moral reasoning to establish the best course of action (Rushton 2001, Preston 2007). However, disagreement about morality and moral views is commonplace and the literature describes several moral doctrines that are now explored.
Ethical relativism Ethical relativism observes that there are ‘no absolute truths in ethics, and
that what is morally right or wrong varies from person to person or from society to society’ (Encyclopaedia Britannica 2013a). This stance contends that ‘there is no such thing as what is “really” right’ (Encyclopaedia Britannica 2013a) and, in doing so, it rationalises the capriciousness of moral belief. Similarly, Garrard (2009) alludes to the view of individual moral views to be right for those who believe them, even if they may not be acceptable for others. This results in a situation where different moral views may be held, without any being essentially amiss. However, this moral perspective does have negative implications. Garrard (2009) explained that judging an action to be acceptable or unacceptable on the basis of customs or standards deemed right in that society leaves ‘no way of criticising people or societies who think that it’s right to harm children’, or who carry out other obviously ‘wrong’ deeds.
Consequentialism This postulates that actions should be judged right or wrong on the basis of their consequences (Encyclopaedia Britannica 2013b). In other words, it is ‘morally right to do whatever will produce the best outcomes’ (Garrard 2009). However, this theory has problems; not least the potential for disagreement about what constitutes ‘good consequences’. furthermore, it upholds the view that, provided we are ‘producing the best consequences, it doesn’t matter what kind of things we do’ (Garrard 2009). Perhaps the most eminent form of consequentialism, known as utilitarianism, supports the notion that the right course of action is one that maximises overall happiness or wellbeing to the greatest number of people (Garrard 2009). The question arises then for those who support
Case study Josh (not his real name) was an 11-year-old boy with lymphoma who relapsed after prolonged periods of hospitalisation as a consequence of his condition and the side effects from chemotherapy treatment. After an initial cycle of chemotherapy, Josh underwent further investigations, which confirmed that his cancer had returned. He went on to have further chemotherapy treatment, but was excluded from the decision-making process that led to this decision. The decision to give further treatment was made by Josh’s clinical team, with the consent of his
parents. The treatment was unsuccessful, but this fact was withheld from him until he had worked it out for himself. When he realised that he was in the palliative stage of his disease trajectory, Josh thought that he had been denied the opportunity to express his opinions and feelings about the situation. This secrecy initially induced feelings of confusion, anger and betrayal in Josh, and overshadowed his relationship with his medical team and his parents. However, subsequently, when they were all aware of the situation, it allowed them to talk openly.
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the notion of consequentialism, and particularly utilitarianism, whether it is morally acceptable to treat a few people unfavourably, in pursuit of improving the lives of most people.
Deontology deontology asserts that certain things should be done ‘on principle or because they are inherently right’; thereby accentuating the concepts of ‘obligation, ought, duty and right and wrong’ (Encyclopaedia Britannica 2013c). The values of deontologists dictate that there are specific types of acts that we should do, and others that we should not do. for example, lying, stealing and killing the innocent are forbidden, while keeping promises and protecting the innocent are required (Garrard 2009). As with the other ethical theories, deontology also has its drawbacks, and a common criticism is that because there are several rules in this theory, conflicts between moral duties often ensue. Choosing between two moral duties may be difficult, and some situations demand infringement of one moral to uphold another. A further criticism is that, because deontology is based on absolutes and does not allow for grey areas, it compels people to uphold morals even when specific situations render this questionable. Absolute moral principles are often too general to deal with specific situations, and often result in ‘conflict of duty’. However, deontologists may overcome this by interpreting them differently – by ‘capturing
moral tendencies’ as opposed to thinking of them as absolute and exception-less; thereby ensuring that moral judgements are ‘sensitive to context’ (Garrard 2009). Four principle approach Principlism has been proposed as a form of deontology that considers the application of moral principles, as opposed to moral theory, to guide ethical decision making (Garrard 2009). A version of this, developed by Beauchamp and Childress (2009), proposed that there are four moral principles that ‘capture the core of ethical thinking in the domain of health care’ (Garrard 2009). This ‘four principle approach’ has become the foundation of medical ethics, and is now widely applied in decision making in health care. It assists doctors and other healthcare workers to make decisions on moral issues (Gillon 1994, Garrard 2009). The four principles are respect for autonomy, beneficence, non-maleficence and justice (Box 1). In addition to the four principles, two more values form the cornerstone of medical practice (Mohanti 2009): ¦¦ Veracity (honesty, truthfulness). ¦¦ Respect for persons (the right to dignity). The four principles approach is adaptable, and may be defensible by deontologists and consequentialists. However, one criticism of the approach is that it lacks any distinct method of prioritising between the principles in instances of conflict. Beauchamp and Childress (2009) accepted that ‘neither morality nor ethical theory has the resources to provide a single solution to every moral problem’ and that these principles should be used to guide decision making. Thus there remains a need for healthcare professionals to assess situations individually, before formulating an appropriate response. The case study (see panel, opposite page) serves to illustrate an ethical dilemma and highlights the stresses related to making difficult decisions.
Beneficence and non-maleficence Balancing beneficence and non-maleficence, or balancing benefit with harm, is evident in Josh’s case, although it is acknowledged that in many circumstances a ‘certain degree of harm may be necessary to provide a benefit’ (Thorns and Garrard 2011). Although Josh’s oncologist and his parents acknowledged that the second round of chemotherapy was aggressive and his chance of cure was minimal, Josh was not consulted before treatment, which went ahead without him being
Box 1 Four principles of medical ethics
¦¦ Respect for autonomy recognises the rights of individuals for self-determination and is the basis for informed consent. This principle infers obligations for truth telling and refraining from deceit, respect for privacy and assisting others to make ‘important decisions’ (Garrard 2009). ¦¦ Beneficence refers to actions that foster the welfare of others including ‘all forms of action intended to benefit other persons’ (Ashcroft et al 2007). ¦¦ Non-maleficence relates to avoidance of harm, and is considered by many to be the primary consideration (Beauchamp and Childress 2009). It is widely believed that it is more important not to harm patients, than to do them good (Ashcroft et al 2007). ¦¦ Justice denotes ‘treating people fairly’ (Garrard 2009) or distributing the benefits and costs of a specific decision fairly; for example, by ‘promoting the fair allocation of health care resources’ (Encyclopaedia Britannica 2013d).
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given a choice. The hope of benefit from the treatment was ultimately deemed to justify the potential harm it would cause. The problems with this are twofold. first, it raises the question as to what may be considered a ‘reasonable burden’ and second, by whom may it be considered to be so. It is accepted that opinions about this may vary between the treatment team, the parents and the child (Rushton 2001); with the child inevitably having to bear the consequences of the disease and treatment. Thus troubling questions exist – not least the threshold for the decision that treatment is unbearable, and the point at which hope of benefit is deemed too slight to justify treatment. As recognised by Rushton (2001), ‘choices among treatments should benefit the infant or child, and clearly outweigh the associated burdens and harms’. She added the tenet that ‘prolongation of life may not always be in the child’s best interests’. In Josh’s case, it could be argued that as the medical team acknowledged that the chemotherapy was aggressive and was likely to be futile, its administration delayed his death, without any significant alleviation of suffering. Therefore, it is clear that respect for the principles of beneficence and non-maleficence becomes even more critical in cases where the suffering and distress elicited are likely to be disproportionate to the prospective benefit, and where the probability of a positive outcome is far from assured, as in Josh’s case. The principle of non-maleficence has several applications, particularly in relation to the ‘doctrine of double effect, withholding and withdrawing treatment, futility arguments and quality of life debates’ (Samanta and Samanta 2011). To justify an act of double effect, four conditions must be satisfied. These include the tenet that ‘independent of its consequences, the nature of the act must be good or at least morally neutral’, and that ‘proportionality demands that the good effect must outweigh the bad effect’ (Samanta and Samanta 2011). Thus, the decision to proceed with this burdensome treatment was justified by the hope of a beneficial outcome and potential cure. Perhaps a more balanced approach to Josh’s care would have been to involve him in the decision
making, by ascertaining and respecting his wishes, in light of his knowledge, understanding and experience of previous treatment.
Respect for autonomy The second principle called into question by the case study is that of respect for autonomy. This doctrine relates to ‘respect for persons’; revering the ‘individual’s right to decide upon their own destiny and to be in charge of decisions relating to themselves’ (Thorns and Garrard 2011). The implicit belief exists that the choices made by the patient, as long as he or she is competent, have primacy. It is undisputed that adults have the right to decide what they consider to be ‘in their best interests’ (Larcher 2005) and for others to be accepting of these choices; including the rejection of life-sustaining medical treatments (Sulmasy and Pellegrino 1999). However, to be able to formulate an autonomous decision, it is necessary for the individual to possess the competence to do so. Unfortunately, this decision-making process in the paediatric setting becomes complicated, as children are often unable to grasp the complex issues involved (Attard-Montalto 2002). This raises the question as to what age children are able to understand, and there is no clarity on this. Vince and Petros (2009) suggested that children as young as ten years old were aware of their impending death. Rushton (2001) argued that after the age of five, children have an understanding of the finality of death and should be provided with information and be involved in decisions about treatment. However, chronological age is just one factor. Rushton (2001) claimed that despite their ‘developmental immaturity and legal status as minors’, the philosophy of ‘respect for persons’ demands that children are acknowledged as ‘individuals whose thoughts, experiences, and opinions matter’, and emphasised the pertinence of involving children in decisions relating to their treatment. She attributed this opinion to the heightened understanding of their illness and profound knowledge of the ramifications of treatments that many ill children have, and professed that in view of this they should be afforded ‘appropriate moral status in the decision-making process’. The General Medical Council (2010) asserted that the competence of a child is related not only to their developmental stage, but also to their experience. It described how a young child who has already endured two courses of chemotherapy will have ‘more informed views about proposals
Decision making in the paediatric setting becomes complicated, as children are often unable to grasp the complex issues involved
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for a third course of treatment than adult patients who are considering such treatment for the first time’; whereas the framework of values for other children with no experience of decision making will ‘remain unformed’. Although children cannot be completely autonomous, their opinions should be considered and their views acknowledged when decisions are made about their treatment and care. In the case study, Josh’s views and opinions on having further treatment were overlooked, suggesting lack of respect. However, it is clear that children’s capacity to understand information and make judgements about their treatment will vary widely. furthermore, the individual child’s wish for participation in treatment decisions may also vary, and it is recognised that capacity for making decisions about health care may depend on the situation. To illustrate this point, Rushton (2001) cited the example of a child who is able to choose not to undergo further chemotherapy, but does not possess the capacity to return home to die. Therefore, the individual child should lead discussions on a case-by-case basis and subsequent care should be negotiated in a staged manner. The concepts of autonomy and respect for persons are inextricable from collaboration and shared decision making. To accomplish this co-creation of individual preferences towards the end of life and to navigate an appropriate plan for care and treatment, the patient’s values, preferences and goals must first be ascertained. This approach has been championed in the literature as one that ensures ‘empowerment of the dying person, allowing them to retain a sense of control until the end’ (Mak and Clinton 1999). However, in the case of children – as illustrated by Josh’s situation – this is not always easy to accomplish. Some may consider that Josh’s autonomy was unacceptably violated by burdening him with further treatment; while others may conclude that any infringement to Josh’s autonomy would be justified on account of the beneficial outcome and a hope of cure. Thus, the subjective component of ethical decision making is clear. In Josh’s case, it could be argued that his previous experiences and informed views should have been given more weight by allowing him to become involved about decisions on his future.
Veracity Although not one of the main four principles, veracity is an important constituent of medical ethics. To achieve active participation in treatment decisions, all parties need to be fully
informed. This in turn relies on the ethical principle of veracity, and although linked to the principle of ‘respect for persons’, it is often an issue that parents and medical professionals struggle with – as was evident in Josh’s case. It may be considered that withholding information from children is an act of deception and is paternalistic. Alternatively, protecting a child from potentially distressing information could be justified on the basis of non-maleficence (Rushton 2001). A moral tension exists when the idea of engaging the child in decisions about treatment is balanced against the fear of imposing the burden of knowledge and choice on to the child. Thus conflict ensues between the desire to protect the child, and the desire to impart potentially distressing information to him or her. In Josh’s case, the course of action chosen by his parents and oncologist initially denied him the chance to express his concerns, thus straining family relationships at a time of great need for the parent and child. This resulted in a position of uncertainty and isolation, where Josh was potentially left to deal with distressing information on his own. In practice, veracity does not have to be polarised against a good death and perhaps the most important consideration is to take things step by step, at the child’s pace. for example, it should be acknowledged that children may not wish to be party to certain information, and may at times prefer decisions to be made for them. However, the importance of ‘ongoing dialogue’ is also recognised; so that children may be assured that when they request information it will be provided truthfully (Rushton 2001).
Justice Although not a major consideration in this case study, the principle of justice should be mentioned. In the current climate of austerity there is a question about the moral justification of treating Josh with second-line chemotherapy with little chance of cure. Conclusion The analysis of Josh’s case study has demonstrated that despite the use of robust ethical frameworks and principles, such as the four principles approach, complex issues and ethical dilemmas Conflict ensues between the desire to protect the child, and the desire to impart potentially distressing information to him or her
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will be commonplace, particularly in ‘life or death situations’ (Attard-Montalto 2002). Thus, it is important that healthcare professionals are able to provide reasons for choosing one decision over another. As professionals, nurses are ‘personally accountable for actions and omissions’ in their practice and ‘must always be able to justify decisions’ (nursing and Midwifery Council 2008). To respond to complex and often emotive issues, nurses may improve their decision making not only by possessing a comprehensive ethical knowledge, but also by having an appreciation of their own beliefs, while respecting the beliefs of others.
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Encyclopaedia Britannica (2013c) Deontological Ethics. tinyurl.com/britannica-deontol-ethics (Last accessed: August 27 2013.) Encyclopaedia Britannica (2013d) Four Principles Approach. tinyurl.com/britannica- 4principles (Last accessed: August 27 2013.) Garrard E (2009) What is ethics? In Earle S, Komaromy C, Bartholomew C (Eds) Death and Dying: A Reader. Sage Publications, London. General Medical Council (2010) Treatment and Care Towards the End of Life: Good Practice in Decision Making. www.gmc-uk.org/End_of_life. pdf_32486688.pdf (Last accessed: July 23 2013.) Gillon R (1994) Medical ethics: four principles plus attention to scope. British Medical Journal. 309, 6948, 184-188. Larcher V (2005) Consent, competence, and confidentiality. British Medical Journal. 330, 7487, 353-356. Mak J, Clinton M (1999) Promoting a good death: an agenda for outcomes research. A review of the literature. Nursing Ethics. 6, 2, 97-106.
Mohanti B (2009) Ethics in palliative care. Indian Journal of Palliative Care. 15, 2, 89-92. Nursing and Midwifery Council (2008) The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives. nMC, London. Oxford Dictionaries (2013) Ethics. http:// oxforddictionaries.com/definition/english/ ethics?q=ethics (Last accessed: July 19 2013.) Preston N (2007) Understanding Ethics. Third edition. The federation Press, Leichhardt nSW. Royal College of Paediatrics and Child Health (2004) Witholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice. Second edition. RCPCH, London. Rushton C (2001) Advocacy and moral agency: a road map for navigating ethical issues in pediatric critical care. In Curley M, Moloney-Harmon P (Eds) Critical Care Nursing of Infants and Children. WB Saunders, Philadelphia PA. Samanta J, Samanta A (2011) Medical Law. Palgrave Macmillan, London.
Sulmasy D, Pellegrino E (1999) The rule of double effect: clearing up the double talk. Archives of Internal Medicine. 159, 6, 545-550. Thorns A, Garrard E (2011) Ethical issues in care of the dying. In Ellershaw J, Wilkinson S (Eds) Care of the Dying: A Pathway to Excellence. Second edition. oxford University Press, oxford. Vince T, Petros A (2009) Should children’s autonomy be respected by telling them of their imminent death? In Earle S, Komaromy C, Bartholomew C (Eds) Death and Dying: A Reader. Sage Publications, London. World Health Organization (1986) Cancer Pain Relief. Guidelines for the Management of Cancer Pain. WHo, Geneva. World Health Organization (1998) Cancer Pain Relief and Palliative Care in Children. WHo, Geneva. World Health Organization (2002) National Cancer Control Programmes: Policies and Managerial Guidelines. Second edition. WHo, Geneva.
Conflict of interest None declared
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Implications for practice
¦¦ As illustrated by this case study, in paediatric end of life care there is often conflict between the wish to protect a child and the need to respect their autonomy and right to be involved in discussions about their treatment. ¦¦ Although in some cases children prefer to let others make decisions for them, this should never be assumed, and all cases must be considered individually. ¦¦ The competence of a child should encompass their developmental stage and level of experience, in addition to chronological age.
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