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37/ Rev. Soc. Bras. Enferm. Ped. v.12, n.1, p .37-47 São Paulo, julho de 2012. RESEARCH ARTICLE ETHICAL CONSIDERATIONS IN PEDIATRIC NURSING Considerações Éticas Em Enfermagem Pediátrica Consideraciones Éticas en Enfermería Pediátrica Franco Carnevale1 Abstract The principal aim of this article is to review ethical considerations related to the nursing care of children and their families. The literature and ethical standards that are reviewed are drawn primarily from a North American perspective. This provides Brazilian nursing readers with an opportunity to reflect on the merits and limitations of drawing on North American experience, and consider future directions for the ethical development of pediatric nursing in Brazil. The article begins with a description of the historical evolution of nursing ethics in North America, followed by a discussion of the leading ethical challenges confronted by pediatric nurses. The latter examines current issues regarding health care decisionmaking for children and families, including the operationalization of the best interests standard, as well as the involvement of children in informed consent and assent for treatment decisions. Several potential implications for the future development of pediatric nursing ethics in Brazil are outlined. Keywords: Best interests, Children, Ethics, Nursing, Pediatric Resumo O objetivo principal deste artigo é revisar aspectos éticos relacionados com os cuidados de enfermagem a crianças e suas famílias. A literatura e os padrões éticos revisados foram extraídos principalmente a partir da perspectiva norte-americana. Isto fornece aos enfermeiros brasileiros a oportunidade para refletir sobre os méritos e limitações de levar em consideração a experiência norteamericana para discutir o desenvolvimento da ética em enfermagem pediátrica no Brasil. O artigo começa com uma descrição da evolução histórica da ética em enfermagem na América do Norte, seguido por uma discussão sobre os principais desafios éticos enfrentados pelos enfermeiros pediatras. Por último examina questões atuais em relação à tomada de decisão pela equipe de saúde sobre os cuidados de saúde de crianças e famílias, incluindo a operacionalização do padrão de melhor interesse, bem como o envolvimento de crianças no consentimento informado e assentimento para as tomadas de decisões relativas ao tratamento. Várias implicações potenciais para o desenvolvimento futuro da ética em enfermagem pediátrica no Brasil são descritas. Descritores: Melhor interesse, Crianças, Ética, Enfermagem Pediatrica Resumen El objetivo principal de este artículo es revisar aspectos éticos relacionados a los cuidados de enfermería a niños y sus familias. La literatura y los patrones éticos revisados fueron extraídos principalmente a partir de la perspectiva norteamericana. Esto brinda a los enfermeros brasileños la oportunidad para reflexionar sobre los méritos y limitaciones de tomar en cuenta la experiencia norteamericana para discutir el desarrollo de la ética en enfermería pediátrica en el Brasil. El artículo comienza con una descripción de la evolución histórica de la ética en enfermería en América del Norte, seguido por una discusión sobre los principales desafíos éticos enfrentados por los enfermeros pediatras. Por último examina cuestiones actuales en relación a la toma de decisiones por el equipo de salud sobre los cuidados de salud de niños y familias, incluyendo la operacionalización del patrón de mejor interés, asi como el involucramiento de niños en el consentimiento informado y aprobación para la toma de decisiones relativas al tratamiento. Se describen varias implicancias potenciales para el futuro desarrollo de la ética en enfermería pediátrica en el Brasil. Descriptores: Mejor interés, Niños, Ética, Enfermería Pediátrica 1 Professor, School of Nursing, Adjunct Professor of Counseling Psychology McGill University, Quebec, Canada. 38 / Rev. Soc. Bras. Enferm. Ped. v.12, n.1, p .37-47 São Paulo, julho de 2012. nursing ethics in Brazil. It should be noted that this INTRODUCTION discussion will focus heavily on treatment decision-making In a 2008 examination of the literature, a number of and ethical issues related to life-threatening illness because significant ethical dilemmas experienced by Brazilian there has been significant development of ethical (1) nurses were highlighted . This study reported that standards in these domains. Readers are encouraged to Brazilian nurses are distressed by their struggles to consider additional ethical concerns that have been protect the rights of their patients. In particular, nurses inadequately addressed in the literature. are confronted by situations where they feel there is inadequate respect for the autonomy of patients as well A SHORT HISTORY OF NURSING ETHICS as insufficient provision of information to patients and their families. Brazilian nurses face difficult working In order to understand the ethical dimension of conditions and significant challenges in communicating nursing, it is helpful to understand how nursing ethics and relating with physicians. These problems result in has evolved over time. This historical overview is adapted asymmetrical relationships that Brazilian nurses believe from a South American Spanish-language text that I contribute to the lack of humanization of nursing care. It published previously(2). This discussion refers primarily can be envisioned that these problems can be particularly to North American nursing, although much of this history challenging in the context of pediatrics, where patients corresponds with the evolution of nursing in many Latin are commonly incapable of adequately expressing their American countries as well(3). needs. However, very little literature has examined the ethical challenges confronted by pediatric nurses. During the 1800s and early 1900s, ethical nursing was regarded as an ethic of medical subservience: a ‘good The principal aim of this article is to review ethical nurse’ did what the doctor told her to do(4). Good nurses considerations related to the nursing care of children and were expected to sacrifice their own interests in favor of their families. The literature and ethical standards that those of the patient, as defined by the physician. In the are reviewed are drawn primarily from my domain of mid-1900s, there was an increasing recognition of the practice: North America. This will provide Brazilian professional autonomy of nurses. Nurses were nursing readers with an opportunity to reflect on the increasingly regarded as independently responsible for merits and limitations of drawing on this North American their decisions and actions. This was based on the view experience, and consider future directions for the ethical that nurses practiced according to their own body of development of pediatric nursing in Brazil. I am presently professional knowledge and standards, which formed the collaborating with several Brazilian researchers to analyze basis for many nursing education programs. current pediatric ethical and legal norms in Brazil. This Since the 1970s, nursing ethics has become team includes: Franco Carnevale (principal investigator), increasingly complex as many ethical and legal standards McGill University, Montreal, Canada; Eneida Simoes have been developed relating to patient rights, consumer Fonseca, Universidade do Estado do Rio de Janeiro; rights, and technological advances, among many others. Ivone Evangelista Cabral, Universidade Federal do Rio These developments continually pose new ethical de Janeiro; Anelise Espirito Santo, McGill University, challenges for nurses. As the complexity of nursing ethics Montreal, Canada; and Renata de Moura Bubadué has been increasing, nursing has turned to several (student), Universidade Federal de Santa Maria. We will sources to help define ‘good nursing’. These sources be reporting our findings in the near future. include law, philosophy, societal moral standards (i.e., In the next section, I describe the historical evolution based on cultural and religious views), and clinical of nursing ethics in North America. In the section that practice standards, among many others. Bioethics has follows, I discuss the leading ethical challenges confronted been very important toward the development of nursing by pediatric nurses. In the final section, I outline several ethics, particularly in North America. Bioethics emerged considerations for the future development of pediatric as a new discipline in the late 1900s to help address 39/ Rev. Soc. Bras. Enferm. Ped. v.12, n.1, p .37-47 São Paulo, julho de 2012. A valuable resource for helping to define nursing growing ethical questions in the health sciences. The most widely recognized bioethical framework in ethics is a nursing Code of Ethics. A nursing Code of the health sciences is referred to as principlism. Ethics is usually developed by a nursing organization Principlism is based on the view that clinical care has to that has some responsibility for defining nursing attend to fundamental ethical principles. The most standards, explicitly stating the requirements for ethical popular principlist framework in the health sciences, has nursing practice. These Codes of Ethics usually draw on (5) been published by Beauchamp and Childress . the various sources described above, taking into Beauchamp and Childress have highlighted four major consideration additional special concerns for the local principles that should define ethical care: autonomy, population. Despite their various differences, most beneficence, non-maleficence, and justice. nursing Codes of Ethics agree highly on various The principle of autonomy is based on the right to fundamental ethical considerations, such as informed self-determination, which is operationalized through the consent, respect for confidentiality, professional doctrine of informed consent. This requires that patients competence, and patient safety. For example, the Code of should be free to choose or refuse health care Ethics for Registered Nurses of the Canadian Nurses interventions, without coercion, and should be given all Association(9) highlights seven principal values: (1) of the information needed about their condition and Providing safe, compassionate, competent and ethical possible treatments, so they can make an informed choice. care; (2) Promoting health and well-being; (3) Promoting Beneficence relates to the requirement for clinicians and respecting informed decision-making; (4) Preserving to help others, to actively seek to do good. Non- dignity; (5) Maintaining privacy & confidentiality; (6) maleficence refers to the Hippocratic Oath: primum non Promoting justice; and (7) Being accountable. nocere. Clinicians cannot intentionally inflict harm. The Código de Ética dos Profissionais de Although harm may be a secondary effect of beneficial Enfermagem (10) in Brazil outlines the principal care, it cannot be desired and it should be minimized. The requirements for ethical professional nursing practice in principle of justice requires fairness in determining which Brazil. resources or services a person or group will receive. - Committed to health and quality of life of the person Principlism has been criticized for implying an family and collectivity (FUNDAMENTAL PRINCIPLES) exaggerated conception of autonomy, favouring an - Actions aiming to meet the health needs of the Anglo-Saxon vision of individualism that disregards how population and the defense of the principles of public many communities and societies favour ‘collectivism’ over health policy and environmental, that guarantee universal (6) ‘individualism’ . Indeed, some ethicists have developed access to health services, integrality of care, different conceptions of principlism, such as the resoluteness, preservation of the autonomy of persons framework developed by Ramos in Brazil(7). Other authors (FUNDAMENTAL PRINCIPLES) have developed ‘non-principlist’ ethical frameworks, arguing against the use of ‘universal’ ethical principles. Some ethicists have developed ‘contextualist’ frameworks, where ‘good and bad’ is understood through an analysis of the particular situation in question. Examples of contextualist frameworks include: some - Respect life, dignity and human rights in all its dimensions (FUNDAMENTAL PRINCIPLES) - Promotion of human beings in their entirety (FUNDAMENTAL PRINCIPLES) - Promoting the health of human beings in their entirety (FUNDAMENTAL PRINCIPLES) cross-cultural ethics models; feminist ethics; relational - Support initiatives aimed to the improvement ethics; narrative ethics; and interpretive ethics. There professional and the defense of rights and interests of are ongoing debates over which ethical framework is best the class and society (Art. 3) for nursing, which will probably remain unresolved, because each approach presents its own merits and (8) limitations . - Provide nursing care without discrimination of any kind (Art. 15) - Ensuring continuity of nursing care (Art. 16) v.12, n.1, p .37-47 40 / Rev. Soc. Bras. Enferm. Ped. São Paulo, julho de 2012. - Provide appropriate information to the individual, Focusing on pediatric nursing, nurses practicing as moral family and collectivity about the rights, risks, benefits agents should be particularly sensitized to the and problems about nursing care (Art. 17) vulnerabilities confronted by children and their families, - Respect, recognize and perform actions to ensure and actively advocate for improving their well-being. The the right of the person or his legal representative, to make following section highlights important ethical concerns decisions about his health, treatment, comfort and well in pediatrics for which pediatric nurses can make valuable being (Article 18) contributions as moral agents. - Keeping secret about confidential fact that has knowledge of, due to their professional activity, except in cases provided by law, court order or with the written consent of the person concerned or his legal HOW SHOULD HEALTH CARE DECISIONS FOR CHILDREN BE MADE? WHO SHOULD MAKE THESE DECISIONS? representative (Article 82) - PROHIBITIONS: Perform or participate in health care Two of the most common ethical questions that arise without the consent of the person or his legal in pediatric health care are: How should health care representative, except in cases of imminent risk of death decisions for children be made? Who should make these (Article 27) decisions? - PROHIBITIONS: Induce abortion, or cooperate in Ethical frameworks used to determine treatment practice designed to interrupt pregnancy - In the cases decision-making for children were developed quite provided by law, the provider should decide in recently. It was only in the early 1900s that infant mortality accordance to their conscience about their participation was recognized as a medical problem in Europe(13-15). Until or not in the abortive act (Art. 28) that time, infant mortality was regarded as a ‘normal’ - PROHIBITIONS: Promote euthanasia or participate phenomenon. With the decreasing size of the family, in practice designed to anticipate the death of the client Western European governments became concerned (Article 29) about stagnating population growth and how the This Code of Ethics also states several requirements economic productivity and military strength of a nation for professional competence and patient safety, mainly could be maintained. Combating infant mortality through (2,10) in articles 5, 10, 12, 16, and 17 medicine was a strategy for promoting the interests of . Ongoing developments in nursing ethics are increasingly recognizing nurses as moral agents (11) . the State. The lives of children were preserved to serve the interests of the society. Nurses are not ‘mindless’ assistants that simply follow During the middle of the 1900s – after World War II – a doctors’ orders. Nursing practice is based on a number of initiatives were undertaken in Western Europe commitment and responsibility toward actively promoting and North America to identify and protect human rights, the well-being of patients, families, and communities. including the rights of the child(16-17). Persons were no longer Some authors have extended this view of nurses as moral agents and have developed the notion of emanacipatory action, building on concepts such as to be used as means for the interests of others or the State. Persons were to be regarded as ends in themselves. This was followed by the development of patient- . The centered ethical standards in medicine(18). In pediatrics, intellectual leadership for much of this work is based on the concept of best interests was adapted from child law the ideas of Brazilian thinkers such as Paulo Freire. as the central standard that should be used to determine partnership, collaboration and empowerment (12) Emancipatory action recognizes that persons can be health care decision-making for children(19-20). disadvantaged by their health or social conditions. Health care decisions for children should be based on Nurses are regarded as important agents that can facilitate what is best for the child; not what is best for others. The the resolution of injustices, drawing on nurses’ best interests standard is important in pediatrics because it knowledge and power within health and social systems. helps to protect children. Given that children generally have v.12, n.1, p .37-47 41/ Rev. Soc. Bras. Enferm. Ped. São Paulo, julho de 2012. less capacity to assert their own interests, in comparison to that they will judge that it is best to withdraw the LST and adults, they are particularly vulnerable toward being used let the child die. Yet, research findings are demonstrating or disregarded in favour of adult interests. that adults commonly misjudge the quality of life with Although there is a legal and ethical consensus in disability; disabled persons rate their quality of life more North America that health care decisions for children highly than others believed their quality of life to be(24-26). should be based on the child’s best interests, there is no When a treatment decision is to be made for a child, which clear and explicit definition of this important concept. In involves the risk of survival with disability, adults may be general, this concept is operationalized in terms of the judging the children’s interests unfairly. proportional balance of benefits and burdens. The In light of the complex personal values involved in treatment option that offers the greatest proportion of assessing a child’s best interests, it is important to benefits in relation to burdens is considered to be in the determine who is the best ‘judge’ for a child’s best child’s best interests. interests. In North America, the persons with parental A major problem encountered in clinical practice is authority for a child are generally considered the legal that there is no consensus on which benefits and burdens decision-makers for pediatric health care decisions, even are most important in performing this proportional LST decisions(21-23). It is generally considered that parents weighing. When the treatment decision involves life- are the most suitable judges for their child’s best interests. sustaining treatments (LST), is the preservation of life However, this decision-making authority can be limited, more important than the quality of life? Should life be through court intervention, if there is a question about preserved even if the quality of that life would be whether the parents are truly acting in the child’s best significantly compromised? Palliative care has made interests (e.g., when parents refuse urgently needed important contributions toward the care of end-stage life- blood products)(27). limiting illness (e.g., metastasized cancer that is refractory It should be noted that it is not a universal view that to continued treatment) by demonstrating how the goals parents should be the principal decision-makers for of treatment should shift from life-preserving ‘curative’ children. For example, in France, although parents are treatment to comfort-oriented ‘palliative’ treatment, also considered the usual decisional agents authorized recognizing that sometimes attempting to combat death to consent or refuse treatments for children, there is an would result in prolonging an inevitable death with exception for LST(28-29). For LST, French norms have difficult to control symptoms. However, in more common designated the child’s treating physician as the decisional pediatric scenarios, such as a newborn with hypoxic- authority. This is based on the view that (a) parents should ischemic encephalopathy requiring enteral hydration and be protected from feeling ‘culpable’ for treatment nutrition or a child with a degenerative neuromuscular decisions resulting in the death of their child and (b) disease requiring mechanical ventilation; these do not parents do not have the required knowledge to make such entail impending death. The child would die if vital a decision. Moreover, the way in which best interests is functions were not supported with medical technologies; operationalized can also vary widely. For example, research but would live if these treatments were provided. in France has demonstrated that physicians tend to With the emergence of bioethics, came the recognition consider it better to withdraw LST to allow some children that it is ethically permissible to withhold or withdraw to die rather than risk their survival with severe disability. LST, if they are considered contrary to the child’s best On the other hand, research in Italy has identified that (21-23) . However, there is a growing body of national ethical norms prohibit the withdrawal of LST, research evidence suggesting that these treatment arguing that life should be sustained even if the child will decisions are often based on discriminatory ‘pre- survive with severe disability. In both countries, these interests judgements’ regarding disability (24-25) . very different ethical approaches are justified on the basis Adults making LST decisions for children can have of their interpretation of the child’s best interests. Future personally biased views toward life with disability such research should examine how best interests is interpreted 42 / Rev. Soc. Bras. Enferm. Ped. v.12, n.1, p .37-47 São Paulo, julho de 2012. PALLIATIVE CARE FOR CHILDREN in Brazil. WHAT ABOUT THE INTERESTS OF OTHERS? As long as health care decisions are based on the child’s best interests, most accepted palliative care The best interests standard poses some difficult measures are generally considered ethically permissible challenges in pediatric health care. It is sometimes for children in North America(31). For example, any possible that what is best for a child may conflict with treatment considered contrary to the child’s best interests the interests of the child’s parents or siblings, or the can be withheld or withdrawn, even if this may result in interests of the health care professionals caring for the death (e.g., withdrawal of mechanical ventilation). child. For example, a disabled child may be able to live a Accepted standards in palliative sedation can also quite satisfying life if it is possible to provide complex be practiced with children, as long as this is based on the technologies as well significant family and clinical child’s best interests and that the ‘principle of double assistance(25,30). In many cases, families and health care effect’ is respected. In other words, sedation and analgesia teams are highly willing and capable of arranging for the can be administered in the context of end-stage terminal supports required for such a child. However, fulfilling illness even if this happens to compromise ventilation the interests of children with complex long-term care and results in death, as long as the doses that are used needs can sometimes conflict with the interests of family are intended solely for the requirements for sedation and members and health care teams. Some families may feel it analgesia and not for death(31). If death resulted as an results in excessive stress on marital, parenting, and adverse effect of providing necessary sedation and sibling relationships and some health care teams may analgesia to a dying patient, and there was no other way feel that the care required by one such child may cause to manage the discomfort and pain, then the unintended unreasonable strain on limited resources, compromising death can be legally and ethically excusable. (30) the services that can be provided for other patients . The cessation of medically-administered hydration A strictly legal interpretation of the best interests and nutrition (e.g., enteral feedings) has been considered standard does not allow the ‘compromise’ of the child’s more controversial for children(32). Feeding cessation is best interests to accommodate the interests of others. considered ethically permissible for adults when the This is important because the disabled child is particularly medically-administered feedings have been refused by vulnerable toward having his/her interests systematically an adult patient with decision-making capacity, or by adult discounted in favour of the interests of family members patients who are incapable to decide at the time but had and health care teams. The child’s best interests should previously indicated to their surrogate decision-maker be central in treatment decision-making, to protect the (e.g., family member) that they would refuse such a child from potential discrimination. However, pediatric treatment in their particular circumstances. However, there nursing should also be attentive to the interests of others has been some debate about whether feeding in children who are affected by the child’s condition and health care. (even medically-administered feeding) should be The interests of others are also ethically significant. This accorded special consideration; whether feeding is a is particularly highlighted in the context of family centered necessity of life that should always be ensured for care. Although their interests should not dominate the children regardless of their medical condition. Recent interests of the patient – because the patient is a position statements by the United States American Academy of of relative powerlessness – the interests of others should Pediatrics and the Canadian Pediatric Society have be treated seriously and strategies should be developed recognized enteral hydration and nutrition in children as for reconciling their needs with those of the patient when a medical treatment, which is therefore subject to the usual these are in conflict. The model of rapprochement treatment limitation considerations for all other described later in this article may be helpful for such treatments, such as mechanical ventilation(33-34). These reconciliation. statements assert that the withdrawal of medically- v.12, n.1, p .37-47 43/ Rev. Soc. Bras. Enferm. Ped. São Paulo, julho de 2012. administered hydration and nutrition can be permissible. should consider seeking children’s assent whenever Despite these published statements, the withdrawal of possible(36,39). Assent implies that health care information enteral feedings remains an ethically complex practice should be provided to children, adapted to their ability for many, because the process can sometimes resemble to understand, and their voluntary cooperation should (32) an active intention to end the life of the patient . A be solicited as much as is reasonably possible. Solicitation thorough analysis should be conducted for each case to of the child’s assent would help promote attention and ensure that a decision to withdraw enteral feedings is regard for the child’s own moral outlook toward proposed based on the child’s best interests; e.g., when it has been health care. determined that continued enteral feedings are considered IMPLICATIONS FOR PEDIATRIC NURSING excessively burdensome for the child. Although assisted-suicide is recognized as a legally and ethically permissible option in some jurisdictions The complex processes discussed in this paper (e.g., (e.g., The Netherlands, Belgium, Switzerland, and the determination of best interests, solicitation of consent or some states in the United States), this is not permitted assent) can benefit from structured consultation and with children because assisted-suicide is premised on discussion processes. In some settings, particularly in the wishes of a legally-capable decision-maker; i.e., an North America, consultations with a clinical ethicist or a adult. The Netherlands is the only jurisdiction in the clinical ethics committee have been developed to assist Western world where it is legally permissible to patients, families, and health care teams(41). An ethics intentionally end the life of a child through medical consultation involves a process of clarification of the intervention, on the basis of the child’s best interests principal ethical concerns, an examination of legal and (i.e., euthanasia). ethical norms relevant for the case, and a reconciliation of these toward a plan of action that is maximally attentive WHATABOUT THE VOICE OF THE CHILD? to all of the morally meaningful considerations. It should be highlighted that an ethics consultant or ethics There is an emerging body of research evidence that committee should not function as a ‘moral police or demonstrates that children have greater understandings arbiter’. These should serve as consultation resources and insights than previously recognized regarding the for those who are involved with a case where there is an (35-39) . Research has ethical concern. An ethics consultation can be conducted demonstrated that by the age of fourteen years, children with part or all of the clinical team. This can be helpful for can engage in health care decision-making in a manner strengthening inter-professional collaboration. An ethics comparable to the capacities of adults (40). In some consultation can also include the patient and family, to jurisdictions, minors have the right to consent help reconcile disagreements or conflicts to develop a independently to health care, although some legal cohesive plan of care. ethical implications of their health care (39) conditions are stipulated . For example, starting at the Various ethics consultation models have been age of fourteen in Quebec, Canada, a minor can consent to described in the literature. The rapprochement framework some treatments (e.g., contraception, abortion, antibiotics) can be helpful in pediatrics(6). Rapprochement, adapted without requiring parental consent and without even from the work of Canadian philosopher Charles Taylor, notifying the parents, as long as their health care does not seeks to bridge the various ethical views, values, and require hospitalization for twelve hours or more. preferences involved with the case, through a gradual Younger children can also demonstrate remarkable cultivation of common understandings. These common capacities and preferences regarding their health care. understandings provide the groundwork for developing Although young children may not have a legally- treatment agreements while strengthening the quality of recognized right to independently consent to health care, the relationship between the patient, family, and health nurses, physicians, and other health care professionals care team. v.12, n.1, p .37-47 44 / Rev. Soc. Bras. Enferm. Ped. São Paulo, julho de 2012. Given the complex responsibilities that pediatric should also be recognized that nurses can confront moral nurses are required to fulfill, nurses have important distress. Moral distress is a distress that is experienced insights into considerations of a child’s best interests, when circumstances prevent persons from doing what recognition of parental perspectives and the voice of the they know would be the right thing to do(49). For example, child, as well as the particular challenges of providing there may be organizational or social barriers in a particular nursing care in selected clinical cases. Mechanisms hospital that discourage nurses from advocating for the should be in place to assist nurses in addressing nursing- rights of particularly disadvantaged children (for example: specific ethical concerns to ensure they can provide care children with disabilities). according to respected pediatric standards. These can Nurses are frequently ‘caught in the middle’ between include the active inclusion of nurses in inter-professional patients and doctors or patients and administrators, with team meetings to review cases or problems, where the important responsibilities for patient care, yet may feel meeting chairperson ensures that nurses have an that they have very little power over determining the care opportunity to speak and have their concerns treated that they can provide(50). Sometimes, pediatric nurses seriously. Nurses should have access to ethics confront situations where morally good outcomes are consultants for discussing their ethical concerns, both impossible; faced only with ‘bad options’ that may feel privately and within a group discussion, depending on beyond their control(51-52). the nature of the concern. Ethics consultants should be All available options can sometimes feel ‘morally sensitized to the moral complexities of nursing bad’; e.g., choosing between withdrawing LST to allow a responsibility and practice. In some situations, access to child to die or maintaining LST and ‘producing’ a severely a nursing ethics consultant or nursing ethics committee disabled survivor. Consequently, nurses sometimes live may be particularly important, to ensure nursing-specific with feelings of guilt, remorse, or regret. It is important to concerns are adequately addressed. These ethics review recognize that moral distress is not a sign of nurses’ and consultation processes should then seek to reconcile personal weakness. Rather, it is a demonstration that nursing concerns with those of others, such as nurses are moral agents with a human conscience, who (6) are sometimes required to practice in morally difficult physicians, patients, and families . Ethics involves values, which can vary from one society to another. Although some research has been published on (42-44) ethical concerns regarding children in Brazil . This has been heavily centered on physician-based (45-48) conditions. At times, the best support that pediatric nurses can offer to patients and families is a recognition of the moral tragedy in the presenting situation; highlighting that they . Very little is known are acting according to required ethical standards and that about ethical concerns in pediatric nursing in Brazil. their ‘bad feelings’ are an expression of moral sensitivity - Although the issues discussed in this article have been an inescapable demonstration of human conscience. research and critically ill children internationally recognized as important, future research Nurses are moral agents – they can and should play a should examine how these may be relevant for pediatric valuable role in promoting ethical care for children and nursing in Brazil. Research should investigate how best families. They should be provided with the clinical, interests as well as how a child may be capable of educational, research, and administrative supports expressing consent or assent to treatment are understood required to enable them to fulfill this role. in Brazil among nurses and physicians, as well as children and families. It is important to identify ethical concerns ACKNOWLEDGEMENTS specific to Brazilian pediatric nursing. This can then inform the development of clinical, educational, research, and administrative strategies for addressing these concerns. With the recognition of nurses as moral agents, it I wish to thank Marissa Carnevale and Georgina Freeman for their research assistance in analyzing publications discussed in this article. 45/ Rev. Soc. Bras. Enferm. Ped. v.12, n.1, p .37-47 São Paulo, julho de 2012. REFERENCES 1. Monteiro MAA, Barbosa RCM, Barroso MGT, Vieira NFC, Pinheiro AKB. 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