MATTHEW P. KIRSCHEN and CHRIS FEUDTNER

■ INTRODUCTION

What are the ethical issues that clinicians should anticipate and consider when caring for children with critical neurologic illnesses and their families in the intensive care unit (ICU)? The first step in addressing clinical ethical dilemmas is recognizing them when they arise, from the time of hospital admission through to discharge. After recognizing and defining an ethical conflict—important steps that can be quite challenging—an appropriate resolution may be simple or intricate, and may require input from third parties like ethics committees. This chapter aims to help pediatric neurocritical care clinicians to be better able to anticipate, recognize, examine, and manage ethically problematic situations in the care of these critically ill patients.

■ FRAMEWORK OF ANTICIPATORY GUIDANCE FOR ADDRESSING ETHICAL ISSUES

Anticipate is a key word in the paragraph above. During ICU hospitalizations, conflicts emerge between the medical team and family frequently enough that they should be anticipated. In one prospective study of pediatric critical care physicians and nurses, conflicts arose in managing nearly half of the children admitted for more than 8 days (1). Drawing on guidelines developed for the ethical treatment of critically ill infants and children (2), we have organized this chapter so as to provide the reader with a framework for anticipating and either preventing or managing ethical problems when treating children with brain injury in the ICU.

Identifying an Authorized Decision-Maker

A prerequisite for ethical decision-making is to identify a person who has the authority to speak on behalf of the patient. Parents or guardians typically serve as authorized decision makers for children with neurologic injuries and determine goals of care and consent to (grant permission for) medical care. The standards that an authorized decision maker must meet to consent to medical treatment include: (1) they appreciate that they have a choice; (2) they appreciate the situation and prognosis as well as risks, benefits, and consequences of treatments; (3) their decisions are stable over time and not impulsive; and (4) their decisions are consistent with their personal values and goals of care (3,4). If a member of the medical team feels that the authorized decision-maker lacks competence to make treatment decisions, that medical provider is ethically required to request a capacity evaluation.

In rare circumstances, children can make medical decisions for themselves if they have been emancipated or deemed a mature minor for medical decision-making purposes (5). Common reasons for emancipation include marriage, pregnancy or having a child, military service, financial independence, and living apart from parents. State courts determine mature minor status by weighing age, ability, experience, education, training, degree of maturity or judgment, and capacity to appreciate the nature, risks, and consequences of procedures (6–8). Most often, a child must be at least 14 years old to be considered, as some studies have shown that children this age have the same ability to make health care decisions as adults (9).

The American Academy of Pediatrics (AAP) has defined the concept of assent for older children and adolescents who are not their own medical decisions makers. The four components of assent are: (1) an appropriate awareness of the nature of their condition; (2) knowledge of what they can expect with tests and treatments; (3) a positive clinical assessment of their understanding of the situation and the factors influencing their response; and (4) an expression of the patient’s willingness to accept care (5). The AAP argues that all children are entitled to understandable medical information and the opportunity to assent or dissent, and emphasizes that a child’s views, once solicited, should be given serious weight. The AAP also advises that if a child is forced to undergo care despite objection, the reasons for doing so should be made clear to them. Dissent in other contexts should be used as an opportunity to explore the child’s discomfort with a test, therapy, or the trajectory of the care plan, and to find an amicable solution with mutual understanding between the patient, parents, and physician (5,10).

Children or young adults who have sustained damage to specific language networks in their brains either by a stroke or other focal injury can have difficulty providing assent or consent. Assessing competence in aphasic patients can be very challenging (11,12). A patient might be able to understand their medical situation, but unable to express their preferences. Likewise, they may be able to speak fluently and express their thoughts, but unable to appreciate the scope and potential consequences of their medical situation and treatment options. It is important to involve specialists like speech and occupational therapists to try to understand the viewpoints and wishes of these children.

In certain circumstances in the ICU, the process of consent may be bypassed. This usually occurs during emergency treatment where an authorized decision-maker is not identified or available. In these scenarios, treatment may be provided with implied consent according to the standard of care with the understanding that the child and surrogate would have provided consent were they able (4,13,14). Importantly, this provision only applies during the acute emergency and does not extend beyond that point. For example, emergency placement of a central venous catheter or endotracheal tube during resuscitation does not allow elective future placement of a more permanent venous access port or a tracheostomy.

Some children are at greater risk for progression of their disease necessitating urgent interventions, and are at greater risk for poor outcomes. Frequent discussions with a child’s family about goals of care are crucial for these medically fragile children so that emergency interventions can be carried out in an ethical manner with as much informed consent as possible. These discussions can be of great benefit to the patient and family even if they are less structured than standard “advanced directives” which are authored by competent adult patients and describe the care they would wish to receive in various potentially end-of-life situations, clarifying preferences for interventions such as cardiopulmonary resuscitation or tracheal intubation. These can be in the form of a typed and signed letter, or better, on the official “out of hospital resuscitation status” forms that exist for most states in the United States (accessible at www.ohsu.edu/polst/programs/state+programs.htm). During the time that the patient is hospitalized, these preferences can be set forth in code status orders with an accompanying note in the medical record documenting the discussion on which the orders were based.

Providing Emotional, Social, and Spiritual Support

Having a gravely ill child in an ICU is an extraordinarily stressful and distressing experience for families. Parents of children with life-threatening diseases report that they turn for support to the medical team as well as their support network outside of the hospital, often (but not always) including a faith or religious community (15). Family members, including parents, siblings, and even grandparents, require ongoing emotional, social, and spiritual support during a childhood critical illness, particularly in the acute phases (16). These forms of support—which can range from helping a parent find a quite room to sleep to providing meal vouchers to the timely visit of a hospital chaplain—can demonstrate the caring feelings that the intensive care team extends to the family and the patient, help families to better cope with the situation, and in a variety of ways facilitate better communication and collaboration between the family and the medical team, and avert some potential conflicts.

Establishing a Pre-Illness Neurologic Baseline

Before prognosticating for a child with a neurologic injury, one must know the child’s prior baseline. Brain injuries from strokes, hypoxia-ischemia, or trauma can have very different implications depending on baseline capabilities. Many children have normal baselines, meaning that they met their developmental milestones on time, performed appropriately in school, and had normal motor and cognitive functions. Children with chronic neurologic and developmental conditions may have had a wide range of abilities and limitations, ranging from mild learning disabilities or motor impairments to being nonverbal, noncommunicative, and totally dependent. Other children have progressive disorders like Duchenne muscular dystrophy, spinal muscular atrophy, or mitochondrial, metabolic, or genetic disorders; for these patients one must inquire about the patient’s level of function or impairments before the injury.

When a child with a chronic static encephalopathy develops an infection, seizure, or dehydration, and is admitted to the ICU, the medical staff often passes judgment on the child’s pre-illness neurologic impairment and poor quality of life. It is far better to pause, forestall judgment, and gather information. The medical team’s assessment should incorporate both the medical (e.g., neurologic/developmental evaluations, therapist reports, neuroimaging and electroencephalographic [EEG]) data, and familial assessments (e.g., the parents’ interpretation of the child’s function) when determining the child’s pre-illness neurologic baseline, covering domains like mental and respiratory status, motor function, communication (including language and cognition), feeding, and sensory function (e.g., hearing and vision) (17). Pictures and videos can be helpful in providing information about a child’s prior behavior and neurologic condition. Acknowledging and agreeing upon a child’s baseline can help minimize conflict and facilitate discussions about prognosis and outcomes. Focusing on capabilities and strengths instead of disabilities and weaknesses is particularly helpful.

Defining Quality of Life

The prognosis for a child’s post-illness “quality of life”—typically focusing on pain and suffering, requirements for ongoing treatment, and levels of cognitive and motor function (17,18)—can be a great source of conflict between health care providers and families. Quality of life assessments are even more challenging after brain injury since the prediction of functional outcome is difficult and accuracy can vary by training and experience of the predictor (19–21).

Physicians and hospital staff must be careful about imposing their personal views and beliefs about quality of life when discussing treatment options and expectations of therapy with families. Several studies have demonstrated differences in attitude between physicians, nurses, and parents about the optimal treatment plan for children with severe impairment. One study found discrepancy between what neonatologists, cardiologists, and cardiac surgeons would recommend for children born with hypoplastic left heart syndrome and what they would want for their own children (22). Physicians were more likely to choose nonsurgical approaches for their own children than recommend them to families. Another study comparing neonatologists and neonatal nurses with adolescents and their parents found that a greater percentage of health care professionals thought a childhood of profound neurologic impairment was worse than death (23). Ultimately—and perhaps inevitably—basing treatment decisions on projected neurologic capabilities and quality of life is difficult, uncertain, and often painful for both parents and physicians.

Establishing the Goals of Care

Discrepancies between family goals of care and the medical team’s assessment of likely outcomes are common sources of conflict and are usually best mediated proactively once detected, at the onset of a change in a child’s condition, or when a prognostic milestone occurs, rather than allowing the discrepancy to linger into a protracted ICU course. While it is becoming more common for outpatient neurologists to discuss issues like life-sustaining therapies with families of children with chronic neurologic conditions, the responsibility to initiate conversations about acute treatment options, and their rationale often falls on the intensivist.

A common mistake made by intensivists is to ask families which specific therapies they want for their child without first clarifying the goals of care (24). Goals of care are usually articulated as pursuits, such as curing disease, alleviating pain and suffering, and improving or maintaining quality of life. Once goals of care have been established with the family, the intensivist can recommend interventions or treatments. Some therapies aim to cure disease or radically extend life, while others focus on enhancing physical or emotional comfort. Establishing goals of care serves to reinforce the therapeutic alliance between care team and family. If the family’s goals of care are in the view of the intensive care team implausible, then this is a point for discussion.

Considering Palliative Care

Palliative care is often an option that warrants consideration for the care of children with grave neurologic injury or diseases. Palliative care focuses on improving a patient’s quality of life, often by treating pain or other distressing systems, and also by attending to emotional, social, and spiritual needs. Compared to other modes of care, palliative care may place less emphasis on duration of life, yet most children who receive palliative care at the same time also receive a variety of life-prolonging treatments; to introduce palliative care into the mix of the child’s overall treatment plan does not require foregoing other aspects of care. Starting palliative care does not require a limitation of resuscitation status, such as a do not attempt resuscitation order; one can get palliative care (or enroll in hospice) and still be a “full code.” Starting palliative care also is not tantamount to the end of life; in a recent prospective cohort study of children receiving hospital-based palliative care services—a cohort in which many of the patients had underlying neurologic conditions—three-quarters of the patients were still alive after a year (25). Many children’s hospitals have over the past decade established dedicated pediatric palliative care teams. Members of these teams are often adept at discussing a child’s medical condition, goals of care, and treatment options with family members, and can help explain what palliative care is and can do for a child with a life-threatening condition.

Contemplating “Futility”

“Futility” is often mentioned during discussions about treatment options for the sickest patients in ICUs. Determining futility has important treatment implications because if an intervention is deemed futile, physicians do not have an ethical duty to prescribe it (13). The practical difficulty with using futility as an ethical argument for withholding or withdrawing therapy is that physicians are not uniform in their understandings of futility (26) or criteria for limiting life-sustaining therapies (27), and often conflate futility with vague expressions like “uncommon,” “rare,” “hopeless,” or “useless” (28). If futility has a useful meaning, it is built upon goals of treatment and the likelihood of therapeutic success with regard to those goals.

The concept and application of futility is hotly debated. Some scholars view futility disputes as a power struggle between physicians and children and their families (29). Others see these disputes as the consequence of the breakdown of the physician-patient relationship. If futility determinations are serving as a facade for quality of life assessments, they should be identified as such and dealt with accordingly (30). These concerns notwithstanding, medical futility, while debated in academic circles and hospital committees, has a lower incidence in ICUs than one may expect given the severity of the illnesses managed there. One study conducted in pediatric ICUs found that only 2.7% of patient-days met at least one definition of futility (31). In clinical situations with potential for futile care, the issues should be identified and addressed prospectively.

Preventing Miscommunication

Miscommunication can occur on many levels during a child’s ICU stay, and commonly results from inconsistent or incomplete sharing of clinical data, assessment, prognosis, or treatment recommendations. Miscommunication can occur between the medical team and family or between the primary medical team and consultants. In one prospective study, physicians and nurses were asked about conflict sources for children whose ICU stay exceeded 8 days, and reported that 60% of all conflicts were between the medical team and families (1). Poor communication (48%), unavailability of parents (39%), and disagreements over the care plan (39%) were most commonly cited.

Avoiding miscommunication can be challenging, especially when children have complex, multisystem involvement to their illness, unclear prognosis, and no standard treatment. The keys to prevention are open discussion regarding the unfolding clinical course, consensus on the treatment plan, and complete transparency in discussions with families. Many institutions now have a family centered care approach and allow parents to participate in daily rounds (32). This model intimately includes parents in their child’s care and provides a forum to speak about their child’s condition and treatment plan. Meetings with the family can also facilitate better communication. Approaches to family conferences vary widely and often depend on the personality and experience of the primary attending physician and the availability of other staff including social workers, chaplains, and nurses. Several guides are available for how to structure and lead effective family conferences (24,33), as well as offering more general communication strategies and suggestions for discussing distressing information with children and families (34,35).

Managing Framing

Framing refers to the portrayal of facts when explaining potential care options, and can include changes in inflection, facial expressions, and gestures. Framing can influence a parent’s informed decision (13,24,36). Framing also plays a key role when phrasing questions to assess preferences or presenting outcome statistics. For example, when discussing a child’s resuscitation status, Murphy and colleagues (37,38) got different responses asking “Would you want us to do everything possible to save your life if your heart stopped beating?” versus explaining CPR mechanics and showing outcomes. Studies have also found that absolute risk reduction is less misleading than relative risk reduction when talking about therapeutic options, and that the order of information and time frame of outcomes can bias understanding (39). Some experts recommend double framing to minimize bias, wherein parents are presented the chances of benefit and no benefit (24). For example, instead of saying, “There is an 80% to 90% chance that treatment will not help,” the statement could be double framed by saying, “There is an 80% to 90% chance that treatment will not help, which also means there is a 10% to 20% chance that it will help.” Because framing can profoundly influence treatment decisions, physicians should be as mindful to frame treatment options and recommendations appropriately.

Handling Prognostic Uncertainty and Timeliness

Neurologic prognostication has evolved from simply estimating the probability of survival to predicting recovery of function. Extensive research has assessed prognosis after events like cardiac arrest and traumatic brain injury (40–42). Most studies have focused on mortality statistics, but some more recent studies have evaluated functional outcomes (17,43). Attempts have also been made to use information like exam findings, secondary systemic injuries, neuroimaging findings, biochemical markers, and electrophysiologic markers to help clarify the severity of injury and chance of recovery (41,44–46). Unfortunately, the data in these studies are too coarse to guide individual patient care, especially in pediatric patients where injuries vary greatly and data are more limited. Several functional outcome measures have been developed to minimize dependence on subjective assessments and apply to the broadest possible age range (17,47,48). Further complicating neuroprognostication is the influence of individual physicians making the prognosis, as one study found that prognostication profiles exist among intensivists and vary according to age and clinical experience (21). It is essential to involve consultants, particularly neurologists, developmental pediatricians, and physical medicine and rehabilitation specialists as these clinicians are usually the ones to provide long-term care for these children and may offer valuable advice in predicting whether goals of care are attainable.

The timeliness of prognostication is another great challenge if the prognosis is to be of use in guiding treatment toward either a radical life-extending path or a palliative care path. After brain injury, the extent of injury is often not evident until swelling and inflammation have subsided. If the child is technologically supported through the acute phase of their brain injury and has time to recover from secondary injuries, and only then the prognosis clearly becomes one of a permanent vegetative state—which may be contrary to the goals of care—then there are no intensive life-sustaining therapies to withdraw. The withholding or cessation of artificially routed nutrition and hydration, which in adults can be justified if the adult patient had previously expressed a preference to not be sustained in an highly impaired state through the use of artificially routed nutrition and hydration, is viewed by many to be different in children who never have had the cognitive capacity to hold or express such a preference. If the provision of artificially routed nutrition and hydration is a cause of ongoing suffering to the child, then it can be stopped (as can any therapy when the benefits are outweighed by the harms), but because “feeding” is such a fundamental aspect of what adults do for children, and stopping feeding and providing hydration has such a certain fatal outcome, the process of doing so requires much deliberation, communication, and collaboration with the family and the medical staff.

Deciding on the Extent of Testing

Questions often arise as to how much information is necessary prior to confidence in a prognosis. Are clinical exams after the injury sufficient, or do advanced tests like EEG and magnetic resonance imaging (MRI) provide essential information? One study found that abnormal exam signs (pupil reactivity and motor response), absent N20 waves bilaterally on sensory evoked potentials, electrocerebral silence or burst suppression patterns on EEG, and abnormal MRI with diffusion restriction in the cortex and basal ganglia are each highly predictive of poor outcome when performed 24 hours after injury (41). If these diagnostic tools do provide crucial information, it is unclear exactly when these tests should be performed to reveal the nature and severity of injury.

Physicians should also be prepared to address the potentially added value of primarily research-based functional neuroimaging studies as another window into the current and potential functionality of the brain. It is still unclear whether noninvasive advanced neuroimaging like functional MRI, positron emission tomography, arterial spin labeled perfusion MRI, or neuromodulatory technology like transcranial magnetic stimulation or transcranial direct current stimulation contribute vital data to neurologic prognosis. Several neuroimaging studies have examined patients in vegetative and minimally conscious states and shown that some speech perception, emotional processing, command following, language comprehension, and even conscious awareness might be retained in some behaviorally vegetative patients (49–51). While these results raise the possibility of misdiagnosis or misclassification, they show an opportunity for imaging technology to be helpful in diagnosing, classifying, and prognosticating. Functional imaging may be able to identify children who will benefit from rehabilitation services or those whose conditions are irreversible. In the near future, families may request or demand these scans as confirmatory tests prior to decisions about life-sustaining therapies. The ultimate goal of this type of imaging is not to replace clinical assessments, but to aid in improving diagnosis and prognostication. This evolving technology may become key in characterizing brain function after injury, but for now one must be transparent when discussing the capabilities and limitations of this technology with families who seek functional imaging.

Determining Whether Brain Death Has Occurred

Physicians, ethicists, and lawmakers have worked to define brain death, particularly in children, and especially with modern life-sustaining technologies and the potential for organ donation after death (4,52–56). Conflicts can arise over the meaning of brain death and the cessation of support after brain death as there is widespread misunderstanding about brain death in the public, media, and among physicians and nurses (57–59).

Brain death can be difficult for parents and families to comprehend, especially when life signs such as heartbeat, warmth, and breathing are present (60). Because these visible signs exist, families may disagree with the diagnosis of death and insist that mechanical support continue. Although most major western religions have accepted the concept of brain death, some families, particularly from some conservative Roman Catholic or Orthodox Jewish communities, believe that cessation of the heart is the only sign of death (4). In situations where families do not accept the diagnosis, physicians must effectively communicate the concept, criteria, and legality of brain death. Since a child who has been declared brain dead is medically and legally dead, physicians should be careful to avoid delivering contradictory messages. For example, referring to ventilation as “life-support” is inaccurate since the child is dead. Similarly, phrases like “allowing the child to die” when extubating convey mixed messages since the child has already died. Taken to the extreme, some argue that family permission should not be required to turn off the ventilator after brain death since permission would not be requested after circulatory failure. Despite physicians’ best efforts to explain the finality of brain death, there have been reports of brain-dead people being mechanically ventilated for months or years (61).

Most families understand the diagnosis of brain death and agree to stop intensive interventions. Families who do not accept the diagnosis or finality of brain death must be handled compassionately and diplomatically. While withdrawal is legal, doing so may create anxiety and guilt among family members and medical staff. Physicians have an ethical responsibility in these situations to balance legal obligations, avoidance of futile therapies, respect for family wishes, compassionate care, and limited medical resources (4,62).

Discharging from the ICU

Disposition from the ICU can present ethical dilemmas or disputes. While most parents want to take their children home, this might not be the best or safest option, and caring for these children at home is often a logistical and financial struggle. Every situation is unique. Social workers, discharge planners, therapists, and physical medicine and rehabilitation specialists can be valuable when deciding the optimal location after discharge. Factors such as insurance coverage, county services, and geographic proximity of facilities affect the family’s options. There is an ethical obligation to advocate appropriately for home nursing care, which is often essential for children with neurologic injury, especially if the child is technology dependent. If the medical team’s collective judgment is that home is not the best location for ongoing care for the child and conflict arises with the family, consultation of an ethics consultant may be helpful.

Seeking Ethics Consultation

Ethical dilemmas are inevitable when dealing with sick children, particularly critically ill children with neurologic problems. Physicians and medical teams often need ethical advice on decisions or conflicts within or between the team and the family. An interdisciplinary ethics consultation service or ethics advisory committee can help identify and analyze ethical problems and find a resolution (63,64). While their recommendations can and often do steer clinical decisions, the attending physician is ultimately responsible for a child’s care (65). Ethics committees and consultation procedures vary by institution, but any member of the care team, including physicians, nurses, therapists, residents, fellows, social workers, and family, should be able to seek consultation. Neurologists or neurosurgeons must participate in cases dealing with neurologic injury, as they can provide an experienced and specialized neurologic exam, offer guidance on prognosis, and clarify criteria for brain death and vegetative states. Ethicists have devised several methods for approaching medical-ethical dilemmas in current practice (4,66,67,68), including one adopted by the American Academy of Neurology Ethics, Law and Humanities Committee as a tool to analyze ethics teaching cases (69).

While barriers exist to ethics consultation (70,71), several studies have shown that physicians and care providers find consultation advice valuable in resolving conflict (72,73). In one multicenter randomized controlled trial of ethics consultations in the adult ICU, 87% of physicians, nurses, and patients or surrogates found that ethics consultation was helpful in addressing treatment conflict, and more than 90% of physicians and nurses would seek consultation again (74). Proactive ethics consultation is one way to maintain communication between care teams and families and has been shown to reduce length of stay in the ICU for dying patients (75).

The boundaries of “standard” and appropriate medical practice are clarified not only by ethical considerations but also by laws. When irreconcilable differences in goals of care or specific treatment plans persist, despite the best efforts of the primary care intensivist team and the ethics consultants, hospital legal counsel can help clarify what is permitted by law in these situations and may provide guidance regarding how to proceed.

■ CONCLUSION

The care of children with acute neurologic injuries, which is inherently complex and demanding, can benefit by proactively anticipating some of the potential sources of ethical conflict that commonly arise when devising and implementing treatment plans for these children. This chapter provides a framework that aims to allow neurointensivists and the patients and families that they serve to feel more secure in their decisions and collaborate more effectively in the care of their patients and children.

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