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Clinical reasoning
Problem

Clinical ethical reasoning
Problem

TABLE CASES: A Step-by-Step Approach to Ethics
17.1
Consultation

C
History

Medical facts

Exam

Medical goals

Data

Differential diagnosis,
clinical assessment

A

S

Differential diagnosis,
ethical assessment

S
Treatment plan

Best course of action

•  Fig. 17.1  Comparison

between clinical reasoning and clinical ethical
reasoning. (From Kaldjian L, Weir R, Duffy T. A clinician’s approach to
clinical ethical reasoning. J Gen Intern Med. 2005;20:306–311.)

Recognition and Clarification of Ethical Issues
The first step in approaching any ethical issue is to recognize that
the situation raises a question related to ethics. Some issues may
be more appropriately handled by a child protection team (when
neglect or abuse is obviously the issue) or a palliative care team
(when there is no conflict over the appropriateness of palliative
care but help is required in transitioning to a palliative care plan;
see also Chapter 16). During this first stage, it is also appropriate
to assess and optimize communication. Communication that has
broken down is frequently a contributor—if not the basis—of
ethical disputes. At a minimum, improving communication
commonly will help to diffuse a crisis so that the issue can be
addressed productively. At times, improved communication between parties may be sufficient to resolve the issue altogether.
Finally, once an ethical issue has been identified, the next step is
to try to articulate, as precisely as possible, the nature of the

ethical question.

Information Gathering
“Good ethics requires good facts” is a common saying in bioethics
circles. Sound bioethical recommendations can arise only from a
solid understanding of the facts involved in the case. Facts include

Determine whether a formal meeting is needed
Engage in ethical analysis
Identify the ethically appropriate decision-maker
Facilitate moral deliberation about ethically justifiable options

Explain the Synthesis
•
•
•
•

Further
information and
dialogue

Consider the types of information needed
Identify the appropriate sources of information
Gather information systematically from each source
Summarize the case and the ethics questions

Synthesize the Information
•
•

•
•

E
Further
diagnostic
evaluation

Assemble the Relevant Information
•
•
•
•

Patient goals

Context

Clarify the Consultation Request
• Characterize the type of consultation request
• Obtain preliminary information from the requester
• Establish realistic expectations about the consultation
process
• Formulate the ethics questions

Communicate the synthesis to key participants
Provide additional resources
Document the consultation in the health record
Document the consultation in consultation service
records

Support the Consultation Process
•
•
•
•

Follow up with participants
Evaluate the consultation
Adjust the consultation process
Identify underlying systems issues

From National Center for Ethics in Health Care. Ethics Consultation: Responding to Ethics
Questions in Health Care. 2nd ed. Washington, DC: U.S. Department of Veterans Affairs;
2015:viii. />
medical facts, such as the mortality rate for a procedure or condition both at the institution and nationally, alternate medical options, or an accurate assessment of the child’s medical condition.
Facts also include relevant contextual details, such as family culture and religion, family circumstances, available resources and
support, and more. A useful tool for gathering facts surrounding
an ethical issue is the four categories method (see Table 17.2).7
During this phase, it is important to seek to understand the
perspectives, values, and goals of the patient (if possible), the family or other surrogates, and various involved members of the
medical team (including primary physicians, consulting physicians, nurses, and other staff). When possible, these perspectives
should be obtained firsthand to avoid the inevitable misunderstandings that result from secondhand or thirdhand information.
It is important to understand stakeholders’ opinions but also the
goals and values behind their opinions. Often, a better understanding of the stakeholders’ underlying values and deeper goals
can help to clarify stated requests and open a path to resolution.
Finally, identifying or refining the core ethical dilemma or
primary conflict may be easier once the appropriate data have
been collected and the voices of those with a stake in the situation
have been heard. It is an important skill and part of the assessment to be able to identify and clarify the ethical dimensions of

the dilemma.


CHAPTER 17  Pediatric Critical Care Ethics

147

TABLE
A Case-Based Approach to Ethical Decision-Making
17.2

MEDICAL INDICATION

PATIENT PREFERENCES

Principles of Beneficence and Nonmaleficence

Principles of Respect for Autonomy

• What is the patient’s medical problem? Is the problem acute?
Chronic? Critical? Reversible? Emergent? Terminal?
• What are the goals of treatment?
• In what circumstances are medical treatments not indicated?
• What are the probabilities of success of various treatment options?
• In sum, how can this patient be benefited by medical and nursing
care, and how can harm be avoided?

• Has the patient been informed of benefits and risks, understood this information,
and given consent?
• Is the patient mentally capable and legally competent, and is there evidence

of incapacity?
• If mentally capable, what preferences about treatment is the patient stating?
• If incapacitated, has the patient expressed prior preferences?
• Who is the appropriate surrogate to make decisions for the incapacitated
patient?
• Is the patient unwilling or unable to cooperate with medical treatment? If so,
why?

QUALITY OF LIFE

CONTEXTUAL FEATURES

Principles of Beneficence, Nonmaleficence, and Respect
for Autonomy

Principles of Justice and Fairness

• What are the prospects, with or without treatment, for a return to
normal life, and what physical, mental, and social deficits might
the patient experience even if treatment succeeds?
• On what grounds can anyone judge that some quality of life would
be undesirable for a patient who cannot make or express such a
judgment?
• Are there biases that might prejudice the provider’s evaluation of
the patient’s quality of life?
• What ethical issues arise concerning improving or enhancing a
patient’s quality of life?
• Do quality-of-life assessments raise any questions regarding
changes in treatment plans, such as forgoing life-sustaining
treatment?

• What are the plans and rationale to forgo life-sustaining treatment?
• What is the legal and ethical status of suicide?

• Are there professional, interprofessional, or business interests that might
create conflicts of interest in the clinical treatment of patients?
• Are there parties other than clinicians and patients, such as family members, who have an interest in clinical decisions?
• What are the limits imposed on patient confidentiality by the legitimate
interests of third parties?
• Are there financial factors that create conflicts of interest in clinical decisions?
• Are there problems of allocation of scarce health resources that might affect
clinical decisions?
• Are there religious issues that might affect clinical decisions?
• What are the legal issues that might affect clinical decisions?
• Are there considerations of clinical research and education that might affect
clinical decisions?
• Are there issues of public health and safety that affect clinical decisions?
• Are there conflicts of interest within institutions or organizations (e.g.,
hospitals) that may affect clinical decisions and patient welfare?

Modified from Jonsen AR, Siegler M, Winslade W. Clinical Ethics. 7th ed. New York: McGraw-Hill; 2010. />
Analysis of Ethical Issues
Once the ethical question has been clarified, the facts have been
gathered, and the voices of the stakeholders heard, the next step is
to begin an ethical analysis of the case. Relevant institutional
policies, healthcare regulations, and legal standards should be applied to the case.
In value-based ethical dilemmas, a variety of ethical theories may
be applied to assist in determining the recommended course of action. It is important to understand that there is no consensus on a
predominant ethical theory. All ethical theories have benefits and
limitations. They can and should be used in combination to help
analyze the situation and assist in coming to the “best possible” set

of recommendations. The following is a limited example of ethical
theories that may be applied to the analysis of ethical dilemmas.

Consequentialism
A consequentialist approach to moral decisions will focus primarily on the predicted outcomes of various choices. Of reasonable
options available, the best choice will be the one most likely to
provide the most favorable balance of benefit versus burden. Generally, in bedside decision-making, a consequentialist approach is
based in the principle of beneficence, focusing the analysis on the
benefits and burdens to the patient.8

Deontology
A deontologic approach to moral decisions will focus on moral
duties, rights of others, and ethical rules and principles, regardless
of the ultimate outcome of the decision. A deontologist might, for
example, insist on the application of a rule to always tell the truth,
rather than attempting to assess whether telling the truth would
result in a good or bad outcome.

Principalism
Most medical ethicists agree on a small number of principles that
should generally guide medical behavior. These include respect for
autonomy, beneficence, nonmaleficence, and justice. The principle
of respect for autonomy places the desires and decisions of the competent patient as the most important consideration in deciding on
a course of action. Because individual values about benefits and
harms differ, individual wishes should be respected. The clinician’s
primary duty is to ensure that the patient has the information
required to make a decision and understands that information.
Some have argued for a broader principle of respect for persons on
the basis that there are ways of respecting persons that are important even for nonautonomous individuals (such as children). The
principle of beneficence requires that clinicians take positive steps

to help their patients and that medical interventions should


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ultimately benefit the patient. This principle demands that the
primary consideration in all therapeutic decisions be the good of
the patient. Closely related to the principle of beneficence is the
principle of nonmaleficence. Nonmaleficence holds that clinicians
have a duty to avoid causing unnecessary harm to patients. In the
PICU, many medical therapies (such as intubation) inadvertently
cause suffering or are burdensome; the principle of nonmaleficence requires that the benefit of these procedures justify the
harm, burden, or suffering that may occur as a result of their use.
The principle of double effect (see Chapter 18 for further details) is
sometimes used in determining whether an action that causes
both benefit and harm can be justified. At its core, this principle
requires that clinicians always consider the suffering of the patient
when making medical recommendations. Finally, the principle of
justice is a complicated principle that seeks fairness when competing claims exist. Among other things, the principle requires that
scarce resources be distributed fairly and not based on irrelevant
factors. One limitation of principalism is that it lacks guidance on
how to prioritize these principles when they are in conflict with
one another in an individual case.9

Virtue-Based Ethics
Virtue-based theories of ethics emphasize the moral character of
the individual clinician. In other words, the clinician who possesses desirable, virtuous characteristics is more likely to make the
best ethical choice most consistently. Virtue-based approaches

tend to be most helpful when addressing boundary issues, conscientious objection, or other issues related to professionalism and
are often less helpful in the more typical conflicts that occur in the
patient care setting.
Casuistic Ethics
A casuistic approach to ethical issues analyzes the current ethical
issue by comparing it with prior similar cases and others’ past
experiences and previous outcomes to help determine the best
decision. It is similar to the reasoning used in legal cases, in which
key precedential cases may be used as “anchors” for appropriate
resolutions. The analysis then seeks to explore similarities and differences between the current situation and those precedential
cases in determining whether similar or different resolutions
would be most appropriate.
Care Ethics
Ethics of care shifts the moral question from “what is just?” to
“how should we respond?” Instead of basing decisions on universal standards and impartiality, the ethics of care argues that caring
for others and preserving relationships are the foundations of
morality.
Narrative Ethics
Narrative approaches to ethical issues emphasize the importance
of understanding cases by taking all their details and complexities
into account while seeking to avoid reducing cases to essential
elements and then applying a rule or principle. In this approach,
details matter, and the resolution of a specific situation may be
determined by how each of the possible options will best fit the
narrative of the patient’s life (or death).
Communitarian Ethics
Communitarianism shifts focus from the individual to the family
and community. It finds intrinsic value in social obligation and
the common good rather than in individual autonomy. What is

in the best interest of the family or society supersedes the best
interest of the individual patient.
During the process of ethical analysis and consideration of
recommendations, it may be helpful to consider whether a solution exists that has not yet been considered by the different
stakeholders. Initially, in a conflict, stakeholders may strongly
advocate for their specific requests. Through a thorough examination of the case, optimization of communication, and a
deeper understanding of the underlying goals and values of the
stakeholders, an alternative solution that may satisfy all stakeholders, at least to some degree, may become apparent. Clinical
ethicists should always seek to identify these alternate, often
creative, solutions.

Communication of Recommendations
Once an ethical analysis has been performed, the resulting recommendations must be communicated to the parties with a stake in
the outcome. This may include a note or notes in the patient’s
chart and may involve discussions with the patient, family, and
staff involved in the care of the patient. Care should be taken to
fully and transparently disclose the rationale behind the recommendations. Stakeholders should have the opportunity for appeal,
a process that may be facilitated by the ethics committee, a patient
advocate, or some other institutional mechanism. Importantly,
the recommendations of ethics consultants and committees are
just that—recommendations to the clinical team. Support for the
recommendations and ultimate decision-making may require
hospital administration or even the courts in some cases.

Support
Even after a decision has been made about how to proceed, patients, families, and staff often require additional support.

Address Staff Distress
Medical staff distress is often an important component of ethical
issues. Staff may experience moral distress from continuing or

not pursuing a particular plan for a patient. Addressing staff
distress through individual conversations or staff-only meetings
may help to deescalate the conflict. Failure to address staff distress may contribute to burnout, job dissatisfaction, and compassion fatigue.10
Support the Patient and Family
Patients and families involved in an ethical dilemma are often
under a tremendous amount of stress. This is in addition to the
stresses that result simply from having a child admitted to the
PICU. Families may perceive a lack of power and support in
the PICU environment—even the ethics consultants and committees may be seen as part of the power structure of the hospital.
It is important to identify advocates and support mechanisms for
patients and families under these conditions.

Ethics of Patient and Surrogate
Decision-Making
Although the concept of patient autonomy seems obvious to all
who practice medicine in this era, it was only a little over 60 years
ago when the trend was for doctors to be more paternalistic and
directive about medical decisions and for patients to accept these


CHAPTER 17  Pediatric Critical Care Ethics

decisions. In the 1960s, a patient movement began to advocate for
more patient autonomy in decision-making. In that era, the predominant ethical cases surrounded the right to die. A landmark
case in 1975 involved Karen Ann Quinlan: her parents wanted
the right to remove her ventilator, as she was in a persistent vegetative state. The physicians refused, believing that they would be
killing her and fearing homicide charges. The beginning of the
patient autonomy movement was focused on the right to refuse
treatments. Generally speaking, these trends toward autonomy
and personal choice became embodied in the doctrine of informed

consent. Over the past several decades, the pendulum has continued to swing past “right to die” cases. More recent trends in the
patient autonomy movement surround the “right to live” and
“right to demand treatments.”

Patient Decision-Making
A patient is given a tremendous amount of latitude to accept or
refuse offered medical treatments if the patient is deemed competent for decision-making.

Doctrine of Informed Consent
The doctrine of informed consent applies to both medical decisions and research. Informed consent must satisfy four requirements that apply when surrogates provide permission as well as
when consent is obtained directly from patients. Disclosure means
that the clinician should supply the patient with sufficient information that a “reasonable person” would desire to be able to make
an informed medical decision. Understanding means that the clinician should assess the patient’s understanding of the proposed
course of action, the risks and benefits of that course of action,
and any available alternatives along with the risks and benefits
associated with them. Understanding may be particularly impaired in the critical care setting, in which the high stakes and
time pressures can impact the ability to achieve optimal understanding. Capacity means that the patient must meet legal requirements for competency, be able to understand the medical decision, form a reasonable judgment based on the consequences of
the decision, and be able to communicate that decision to others.
Legally, children younger than the age of 18 years are not considered competent for medical decision-making with the exception
of emancipated and mature minors. Emancipated minors are considered competent on the basis of characteristics that are defined
by state law but that may include pregnancy, parenthood, or establishing financial independence. Mature minors represent another category that is defined by state law whereby a minor, usually above a certain age, can be judged competent to make certain
medical decisions. Most states require a judge to make these determinations, and the judge may restrict the determination to the
medical decisions at hand. Voluntariness means that decisions
must be voluntary and not subject to coercion, manipulation, or
undue influence. Importantly, physicians should not withhold or
deemphasize information in an effort to manipulate patients.11

Emergency Exception to Informed Consent
Under specific emergent circumstances, informed consent may
be forgone in order to provide necessary lifesaving medical interventions. The emergency exception requires that the medical care

in question is required emergently, the patient is incompetent,
that no surrogates are readily available, and that medical intervention is needed to save the patient’s life or prevent permanent
disability.

149

Advance Directives
Advance directives allow competent persons to document their
values and medical decision-making preferences before becoming
incapacitated patients.12 Living wills document values and desires
in writing, and healthcare durable power of attorney designates a
surrogate who presumably understands the patient’s values and
desires. The Patient Self-Determination Act requires all Medicare/
Medicaid participating institutions to inform patients older than
the age of 18 years of their rights to formulate advance directives
on admission. Advance directives for children can also be developed by parents or other guardians with input from children as
appropriate.13

Child and Adolescent Decision-Making
Children younger than the age of 18 years are generally considered not competent to make medical decisions unless they meet
criteria for emancipation or mature minor status. However,
most agree that the opinions of children and adolescents should
not simply be disregarded. Adolescents should be involved in
discussions about their healthcare and should be offered the
opportunity to voice their feelings, opinions, and concerns.
They should also be provided reasonable opportunities to make
choices and have those choices respected.14 On the other hand,
there is no consensus as to whether any adolescent is truly mature enough to refuse lifesaving treatment in situations in
which there is likely to be a good prognosis with a proven intervention. Although adolescents older than the age of 13 years
are generally capable of making rational decisions, they are less

likely to do so under conditions of high emotion or intense
pressure. They are more likely than adults to act impulsively
without full consideration of consequences, and they tend to
weigh current rewards and harms more strongly than future
consequences of a decision.
Many factors would be relevant in determining whether an
adolescent possesses sufficient maturity to make a life-altering
medical decision. Minimally, however, judges and clinicians
should require a high level of psychosocial maturity and consider
the adolescent’s ability to understand and reason, project meaningfully into the future, express a relatively settled set of values
and beliefs, and demonstrate that the adolescent’s decision is
driven more by long-term interests than short-term concerns. The
chances of a good outcome with treatment and the burden of the
proposed interventions are also relevant considerations. In general, it would be unusual to allow an adolescent to refuse interventions in a situation in which the parents would not be allowed to
make that decision for the adolescent.15

Shared Decision-Making
The patient autonomy movement that began in the 1960s moved
medical decision-making away from a predominantly paternalistic approach. There has been some concern, however, that in an
effort to prioritize patient autonomy, patients are all too frequently provided with a menu of options without sufficient guidance in decision-making. The middle ground is shared decisionmaking. Shared or collaborative decision-making should combine
the clinician’s expert knowledge and experience with the patient’s
and family’s values and preferences.16,17 Even though patients are
rightfully granted autonomy to give informed consent, clinicians
should not abdicate responsibility for recommending a course of
action based on the patient’s values and guiding the patient
through the decision-making process (see Chapter 16 for additional discussion).


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Surrogate Decision-Making
In critical care medicine (adult and pediatric), it is not uncommon for patients to lack decision-making capacity. In these situations, a surrogate decision-maker is required to participate in
medical decision-making. Surrogate decision-making falls into
two categories: decision-making for patients who were previously
recognized as competent under the law (e.g., a 22-year-old) and
patients who have never been competent (e.g., a 4-month-old).
Surrogates must adhere to different standards in each of these two
categories.

Surrogate Decision-Making for Previously
Competent Patients
In the category of the formerly competent patient, the surrogate
decision-maker (parent, spouse, etc.) must adhere to the substituted judgment standard. In other words, the surrogate is asked to
make decisions most consistent with what the patient would have
wanted. This is an attempt to preserve the patient’s autonomy and
honor the patient’s values. There may be some cases in the PICU
for which this standard applies, such as older adolescents who
have been living with chronic disease or young adults who have
been admitted to the unit.
Surrogate Decision-Making for Never-Competent
Patients
In the category of the not previously competent patient (which
includes the majority of patients in the PICU), surrogates are held
to a different standard—the best-interest standard. In theory, most
children have not yet developed stable values and beliefs; therefore
these values cannot be known and cannot be used for surrogate
decision-making. The best-interest standard attempts to maximize
the benefit-to-burden ratio for the patient from the patient’s perspective. This, of course, is open to interpretation (and conflict)

regarding how to calculate and weigh the various benefits and
burdens as they would be experienced by the patient. Quality
of life is a phrase that arises commonly in conversations about a
patient’s best interest. It is important to keep in mind that quality
of life is a subjective and value-based assessment. Clinicians
should be aware of their own biases, and caution should be used
when applying this concept to the best-interest standard.
Parents as Surrogate Decision-Makers
Parents (or guardians) are generally empowered to make healthcare decisions on behalf of their children and, with few exceptions, have the legal authority to do so. From an ethical perspective, parents are generally considered the default surrogate
decision-makers for their children because they are most likely to
understand the unique needs of each child and are presumed to
desire what is best for the child. Additionally, some degree of
family autonomy is considered an important social value. Finally,
in settings of uncertainty, family values and competing family
interests may be considered.
Limits of Parental Refusals
In most situations, parents are granted wide latitude in the decisions they make on behalf of their children; the law has respected
those decisions except when they place the child’s health, wellbeing, or life in jeopardy.18,19 Parental authority is not absolute,
however—when a parent or guardian fails to adequately guard the
interests of a child, the decision may be challenged and the state
may intervene. A clinician’s authority to interfere with parental

decision-making is limited. Except in emergency situations in
which a child’s life is threatened imminently or a delay would
result in significant suffering or risk to the child, the physician
cannot do anything to a child without the permission of the
child’s parent or guardian. Touching (physical examination, diagnostic testing, or administering a medication) without consent is
generally considered a battery under the law. The clinician’s options include either tolerating the parents’ decision (while continuing to try to convince them to act otherwise) or involving a
state agency to assume medical decision-making authority on
behalf of the child.

Only the state can order a parent to comply with medical recommendations. This can take different forms but most frequently
either includes involvement of child protective services (under a
claim of medical neglect) or a court order. Both options represent
a serious challenge to parental authority and will generally be
perceived as disrespectful and adversarial by parents. Such action
interferes with family autonomy, can adversely affect the family’s
future interactions with medical professionals, and can negatively
impact the emotional well-being of the child. Neither should be
undertaken without serious consideration. Before initiating involvement of state agencies to limit parental authority and override parental refusal, the clinician must establish that (1) the recommended course of action is likely to benefit the child in an
important way, (2) the treatment is of proven efficacy with a reasonable likelihood of success, (3) the parent or surrogate’s decision
to refuse intervention places the child at significant risk of serious
harm in comparison with the recommendations of the healthcare
team (applying the harm principle), and that (4) all attempts at
mediation and negotiation to find a mutually acceptable solution
have been exhausted (Box 17.1).20

Limits of Parental Demands
There are also limits to a parent’s ability to demand medical
therapies that are not recommended by the medical team. Clinicians need not always accede to parental requests. Healthcare
professionals have an independent obligation to apply their
knowledge and skills in a way that meets professional standards of
care and benefits the patient. For example, clinicians can refuse
parental requests for medical therapies for their children that
• BOX 17.1

Conditions for Justified State Interference
with Parental Decision-Making

• By refusing to consent, are the parents placing their child at significant risk
of serious harm?

• Is the harm imminent, requiring immediate action to prevent it?
• Is the intervention that has been refused necessary to prevent the serious
harm?
• Is the intervention that has been refused of proven efficacy and therefore
likely to prevent the harm?
• Does the intervention that has been refused by the parents not also place
the child at significant risk of serious harm, and do its projected benefits
outweigh its projected burdens significantly more favorably than the option
chosen by the parents?
• Would any other option prevent serious harm to the child in a way that is
less intrusive to parental autonomy and more acceptable to the parents?
• Can the state intervention be generalized to all other similar situations?
• Would most parents agree that the state intervention was reasonable?
From Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state
intervention. Theor Med Bioeth. 2004;25:243–264.