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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
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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)
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- 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
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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.
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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-
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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.
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