Abstract

The field of paediatric neurology has evolved considerably in parallel with enhanced longevity, advances in technology and changes in cultural perception. New concepts have been promoted with respect to health, functioning, quality of life and legal rights. This has seen the development of novel approaches to the child in society, disease, disability, professional-family relationship and the role of the paediatric neurologist, associated with enhanced responsibility. This changing climate has also led to increasing recognition of ethical situations including in terms of uncertainty of diagnosis and prognosis, harmonising the goals of medical care, decision-making, evidence-informed practice, research, and developing partnerships with families and young people with neurological impairments as well as with colleagues. The principles of bioethics, namely autonomy, beneficence, non-maleficence and justice, apply with particular resonance in paediatric neurology. Together with a relational and contextual approach, they help in identifying and addressing ethical issues pertaining to daily (clinical) life and in revisiting the interface between good clinical practice and ethical practice as an empathic experience. These areas should inform further development, concepts, and content of the field.

 

An early version of this paper was presented as a keynote lecture at the 14th International Child Neurology Congress “Bridging Worlds; Child Neurology from a Global Perspective” in 2016 in Amsterdam, the Netherlands.

Medical ethics has long historical roots that have grown strong through countless individual and societal challenges. From centuries past, medical ethics was often captured in three Latin words freely adapted from the Hippocratic Oath: primum non nocere – ‘Do no harm’. In fact, the Oath rather states the following: ‘I will, according to my ability and judgement, prescribe a regimen for the health of the sick; but I will utterly reject harm and mischief’ [1]. Still, ‘primum non nocere’ aptly epitomises the non-maleficence principle that currently guides ethical reasoning and clinical practice across clinical professions alongside three other principles, namely respect for autonomy, beneficence, and justice [2]. These ethical principles have developed a particular resonance in paediatric neurology because of new challenges that have emerged over the past few decades, such as enhanced longevity in many childhood-onset neurological conditions and technological advances with regard to both diagnosis and management [3,4,5]. In parallel, marked developments have occurred in the cultural perception of the child in society, as well as the concepts of disease and disability, thereby creating a need to revisit the equilibria struck between those principles.

Health

The concept of health was long defined as a state of complete physical, mental and social well-being [6]. It has shifted towards a more dynamic, personal perspective with an emphasis on function. Wilder Penfield, American-Canadian pioneering neurosurgeon, for example, explored at length the goals of treatments with his patients before surgery [7]. Health is now rather seen as a person’s ability to function in a manner that is acceptable to themselves, in ways that include their expectations and values, even in the presence of impairments [8]. The very notion of self-evaluated functioning has come to complement the more objective characterisation of neurological impairment [9,10]. Beyond asking what is wrong, clinicians now consider what is right, what works, what this child’s and family’s strength are, and what goals and interventions they would value.

Quality Of Life

Accordingly, the issue of quality of life has become central [11] in clinical evaluation and management planning. Some studies have thus demonstrated similarities in self-reporting of various aspects of quality of life between selected groups of patients with significant neurological impairment and unimpaired peers [12,13,14]. This has led to a recognition of the so-called ‘disability paradox’ that many individuals with serious and persistent disabilities report experiencing a good quality of life whereas to most external observers it would appear as undesirable [15]. These studies do not suggest that high levels of quality of life should be expected in the presence of impairment but rather that proxy stakeholders, including paediatric neurologists, cannot confidently anticipate an individual patient’s self-perceived life quality by the level of impairment alone.

Changing Scope

Societal changes that have influenced the ethical approach in paediatric neurology also concern the relationship and reciprocal expectations of professionals and families, and thus the role of paediatric neurologists. The need to plan and implement increasingly complex investigations and therapies, and to counsel individuals and families about them in this new relational setting, have resulted in increased responsibility on the part of paediatric neurologists. The scope of effective follow-up has also extended from foetal life, as a result of advances in antenatal diagnostic and even therapeutic possibilities, through adolescence and transition to adult care, thanks to improved life expectancy and better clinical services.

Evidence-Based Practice

Evidence-based medicine has also become increasingly important in paediatric neurological practice. This approach implies that practitioners maintain continuing education and use their clinical expertise in retrieving, interpreting and applying the results of scientific studies to individuals in everyday practice. In many domains of paediatric neurology, the evidence is currently patchy [16]. This situation implies a responsibility for clinicians towards the development of clinical research in our field to accumulate and strengthen evidence to understand, prevent and treat disease, as well as preserve life-long health. Extrapolation from studies conducted in adults often has limited relevance and may be harmful, as in stroke management. Occasionally, there may be a tension between the two roles, of clinical practitioner and researcher. Healthcare duties of the clinician are directed towards the individual patient, while the scientist’s obligation is to contribute to the growth of knowledge. In practice, whenever a conflict is identified between the two roles, the patient’s inalienable right to the best available clinical management must always take precedence. Clinical research in children raises a number of more specific ethical issues [17]. Children show specific vulnerability and require protection. They also have the right to the best standard of healthcare, to information and participation in decision-making. The issue of consent following appropriate information remains fundamental to the conduct of research. Over the past decades, young people and parents have increasingly been involved in all aspects of research. Ethical and legal codes describe proxy-consent on behalf of children lacking the capacity to provide appropriately informed consent, i.e. the ability to understand what is involved and the consequences. Consent is obtained from a parent, or legally authorized representative, on behalf of the child. Yet, the child’s assent, i.e. active affirmative agreement should also be sought from the child [18] just line with clinical practice [19]. This occurs in the context of relationship between the physician, the parents and the child in which child medicine is carried out, which commonly commonly involves moderate paternalism on the part of the physician [4].

In addition, ethical issues have been identified with respect to the risk for shortcomings of the right to health following studies in which children participated, particularly in resource poor settings, e.g. post-trial access to HIV pre-ex-posure prophylaxis [20]. In 2013, this requirement was integrated into the World Medical Association’s Declaration of Helsinki that suggests ethical principles for medical research involving humans: “In advance of a clinical trial, sponsors, researchers and host country governments should make provisions for post-trial access for all participants who still need an intervention identified as beneficial in the trial. This information must also be disclosed to participants during the informed consent process.” [21]. More generally, the issue of the social value of health research has been addressed increasingly from a global health perspective, not eluding resource poor settings [22]. Studies have highlighted the importance of sharing the benefits of research with participants, but also some remaining debate about the researchers’ responsibility to ensure sharing of benefits from the research with the participants’ communities and host nations [23].

Technological Imperative

Another increasing trend that raises serious ethical concerns has resulted from dramatic technological advances in possibilities for diagnosis and clinical management in paediatric neurology. These advances have reshaped clinical practice as well as research, and have led to new societal expectations and demands. The technological imperative may thus imply, quite simplistically, that if something can be done, it must be done. The technological imperative will gravely threaten the child’s interest if paediatric neurologists feel compelled to use new and emerging technologies without adequate reflection on whether the use they are making contributes to the goals of medical care [24]. Though new diagnostic and therapeutic possibilities may appear to reduce the responsibility of the clinician (e.g. when prescribing modern neuroimaging or genetic testing creates the illusion that clinical examination can be cursory), clinical skills remain paramount to relevance and integration of information. On the contrary, the technological imperative enhances the cli-nician’s ethical responsibility, especially when investigations are undertaken that may be ‘interesting’ for the clinician but less important to the family [25]. The question ‘whose needs are being served?’ must remain a guide in clinical practice.

Societal Roles

Increased ethical responsibility of paediatric neurologists concerns not only individual patients as they have acquired increasingly recognised societal roles. Among these, advocacy, support of lay patients’ organisations and education of the public have developed in parallel with societal changes and progress in communication technologies. The paediatric neurologist’s guidance is also sought in court and in the process of law-making. In addition, it may be necessary to take a proactive role in anticipating the social impact of new technologies and play a whistle-blowing role, e.g. with respect to neglect or abuse of vulnerable populations.

To some extent, the physician’s increased responsibilities have been delineated by legal rights, such as national laws on rights of patients or the United Nation Convention on the Rights of Persons with Disabilities [26]. It must be remembered, though, that legal texts may at best clarify the margins to practice within but are rarely at the core of ethical practice. Indeed, ethics is often concerned with more subtle questions related to the balancing of legal requirement with other interests and competing ethical principles.

Principle Of Bioethics

The general analytical framework that can be used in clinical practice to disentangle the ethical complexity of the clinical situations includes principles that are widely applied in health care, such as respect for autonomy, beneficence, non-maleficence, and justice [2]. These principles do not impose attitudes or provide ready-made solutions. They cannot a priori identify ‘good’ and ‘bad’ in a specific clinical situation. Rather, they can help organize reflections on moral issues that often arise in clinical practice and support a constructive dialogue about those issues [5].

The bioethical principle of autonomy describes the pa-tient’s right to make their own choices. This must be supported by informed consent, which implies special attention to the notion of competence and eventually surrogacy. The principle of beneficence grants much importance to the child’s best interest and welfare and includes health prevention. Though literally meaning ‘do good’, in practice it refers to ‘doing more good than harm’. It is not identical to the principle of non-maleficence, referred to above as ‘do no harm’, though the latter also emphasises the patient’s interest, and in particular quality of life. It may be thought that the non-ma-leficence principle can be met by ‘doing nothing’. However, in clinical practice rather than doing nothing or straightforward doing ‘no harm’, this principle applies when striving to not to take action that would result in more harm than good. The fourth biomedical principle is justice, a concept that emphasises fairness and equity among individuals, implying, for example, fair distribution of care by the health professional as well as by the health system. This raises complex discussions, particularly when it involves management of scarce resource [27].

Currently, many clinicians consciously value these ethical principles, but most do not systematically use them directly when making clinical decisions [28]. An alternative, more practical and contextual approach to medical ethics has suggested a ‘four topics chart’ to deal with clinical situations [29] (Figure 1). These topics include medical indications, patient preferences, quality of life and contextual features. Under medical indications, questions relating to the principles of beneficence and maleficence are examined, such as the goals of treatment, how this patient can benefit from care and how harm can be avoided. Similarly, patient preferences relate to autonomy, to the quality of the information that is provided, and to cooperation. The topic of quality of life concerns beneficence, non-maleficence, and autonomy. It questions, for example, on what grounds one can judge desirable or undesirable quality of life for a patient who cannot make or express such a judgement. Finally, contextual factors relate to the principle of justice and cover topics such as conflicts of interest that could thwart the fair consideration of the interests of a patient.

Figure 1.The four topics approach to clinical ethical case analysis, after Jonsen et al. [29].

Whether an approach based on principles or topics is preferred, ethical reasoning and communication are grounded in features identified in individual situations. Clinical encounters are inherently particular, both humanly and contextually, yet they provide us with useful clues to address other, more or less related situations. These individual situations and their ‘resolution’ cannot act as precedent cases as they do in a legal discussion, where a principle (or its interpretation) put forth in a previous legal case becomes binding or at least a persuasive reference when deciding on subsequent cases involving similar issues. The limitations of the jurisprudential approach originate in the irreducible singularity of clinical cases, which have to reflect the clinical notion that similar facts do not reliably yield predictably similar outcomes. Indeed, any individual clinical situation comprises multiple realities corresponding to views and projections of each of the implicated individuals. These should not be expected to coincide with previous cases. In fact, they often come into conflict with other similar cases. Respect, trust, honesty, empathy and commitment are instrumental to articulating the different ways of reasoning but also to allow the emergence of an ethical decision resulting from meaningful dialogue. The exercise of dialogue and open-minded ethical problem solving is, however, difficult. One of the pitfalls is the danger of alienation through cultural relativism, based on the assumption that an individual’s beliefs and attitudes are determined by the specifics of his or her culture. Cultural aspects require to be decoded not only where different geographic origins seem to call for this but based on the recognition that every individual relates to his or her own culture in different ways. In practice, the presence of cultural factors (together with other social factors) should not overshadow the importance of more general, non-specific issues such as communication, lack of adaptiveness of the system, or uncertainty in diagnosis, outcome, management planning, etc. Indeed, the latter factors that are often at the very core of the presentation of clinical problems. Communication on ethical issues can often be usefully supported by sharing and weaving together a narrative, a story in which ‘the patient is the hero’. At times, this allows for envisioning alternative stories and processes by which possibilities of a situation can be considered. Such narratives are ultimately based on observed signs, facts and empirical data, and they must also deal with incomplete knowledge, conjecture and situational judgement [30]. In many ethical discussions, the focus appears to be on decisions between options of action, as though this were the crux of ethical thinking. However, decision-making in paediatric neurology is mostly a gradual, stepwise process that must be inscribed in time with the setting of priorities as they plausibly manifest themselves. This may imply postponing difficult questions later along the unfolding of the situation and leaving the narrative open, so to speak.

Good Practice

Finally, it must be underlined that medical ethics has long been a crucial part of good clinical practice. However, the last decades have brought many changes within and outside of clinical practice that have generated unforeseen ethi-co-clinical situations as well as new ways of engaging with those situations. In the process of tackling ethically problematic situations, one should, therefore, avoid the temptation of ‘understanding too quickly’ since a comprehensive and generous understanding of clinical situations is an important starting point. Another consideration is that regardless of the moral reasoning approaches employed, ethical thinking often offers non-definitive resolutions of ethical problems, and thus humility is warranted. The interested reader will find examples of the application of this approach in paediatric neurodisability in our recent edited volume featuring discussions of numerous scenarios faced by international clinicians in their daily practice [5].

Acknowledgements

None

Competing interests

The author has declared that no competing interest exists.

Author Contributions

All authors discussed together the themes included in the manuscript and all wrote chapters in a book that served as a primary base for the manuscript (ref. 5). BD drafted the manuscript, which was critically revised by all the authors.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/ licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

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