Roger's Textbook of Pediatric Intensive Care - chapter 3

Chapter 3
Impact of Pediatric Critical Care on the Family, Community, and Society
Lewis H. Romer
David G. Nichols
Heather Woods Barthel
Jos M. Latour
Jessica Mesman
The acute and comprehensive nature of the care provided in the PICU has made it a frequent point of entry into the hospital system and a highly visible contact point for many types of emergency services for children. The circumstances that bring children and their families to the PICU often involve crises that summon the attention of entire families and have ripple effects throughout their communities. Care of the critically ill child therefore has a high impact factor with regard to society at large. Additionally, as a consequence of this important role, the PICU care team may have opportunities to interface with a large number of diverse perspectives and venues. If they are performed skillfully, these interface functions can have a positive impact on the care of children, both within and outside the walls of the PICU.
The goals of this chapter include the enhancement of sensitivity, efficiency, and effectiveness in the PICU professional's interactions with the families that they serve. The major focus points are the initial establishment of a working relationship, process points for difficult segments of the hospital course, dealing with disability and death, and functions that the PICU practitioner may have in increasing societal awareness of child health and safety.
Orienting the Family to the PICU Environment
The admission of a critically ill child to a PICU initiates a unique relationship—the PICU care team cares not only for the child, but also for the parents, siblings, grandparents, and significant others of that child. This “additional” family-centered care is now recognized worldwide and has become standard practice in the PICU. The needs of parents may vary by country or even within a country due to ethnic, social, cultural, or personal differences. Therefore, the context of family-centered care should be based on the individual needs and requirements of the whole family. Knowledge of both specific parental needs and salient features of past parental experiences in the PICU environment is crucial for healthcare workers to set common goals for the process of guiding the parents through the intensive-care period and beyond.
Changes in Family Structure
The values and norms of many regions in the world are changing rapidly, and these changes impact upon the family structure. Traditionally, a family is a two-parent unit in which the mother is the caretaker of the children and the household and the father is the breadwinner. Databases from the US and Europe provide evidence that the nontraditional family structure is becoming more common. The prevalence of divorce among American families increased from 8.3% in 1990 to 10.2% in 2003 (Table 3.1). In the 25 countries of the European Community, the number of divorces has almost doubled in the past 30 years (Table 3.2). The consequences of these changes include an increase in single-parent families and a shift in the socioeconomics of family structure. Many mothers do not stay at home full-time, but participate in the working environment. Many become the head of the household, and some may have sole legal responsibility for their children.
Another type of major demographic change in family structure is exemplified by China, the country with one quarter of the world's population. The one-child policy introduced in China in 1979 affected family composition dramatically (16). The Chinese government claimed that this was a short-term measure to achieve a voluntary small-family structure, but the regulation still exists. This kind of family planning might directly influence parental psychologic and socioeconomic well-being when a child becomes critically ill. One recurrent observation of parents who find themselves suddenly and unexpectedly thrust into the crisis of their child's critical illness in the PICU is that this situation threatens the reversal of the expected natural order: Children are supposed to care for aging parents and “carry the baton” into the next generation. Worldwide family demographics that indicate a smaller number of offspring per family may intensify the poignancy of the reversal of this dynamic. Regardless of ethnicity and the reasons for changes in family structure, parental coping with a critically ill child is fundamentally based on the individual family's values, norms, behaviors, and attitudes.
Table 3.1 Marital Status of the US Population from 1990 to 2004
Marital status 1990 1995 2000 2004
n % n % n % n %
Never marrieda 40.4 22.2 43.9 22.9 48.2 23.9 53.2 24.8
Marrieda 112.6 61.9 116.7 60.9 120.1 59.5 125.8 58.5
Widoweda 13.8 7.6 13.4 7.0 13.7 6.8 13.8 6.4
Divorceda 15.1 8.3 17.6 9.2 19.8 9.8 21.8 10.3
Totala 181.8 191.6 201.8 214.5
a In millions (181.8 represents 181,800,000); persons ≥18 years old of age. Excludes members of the Armed Forces, except those living off-post or with their families on post. Beginning 2001 population controls based on Census 2000 and an expanded sample of households. Data from US Census Bureau: Accessed January 2007.
These changing and diverse aspects of family life increase the need for healthcare workers to understand the individual family structure of each child admitted to a PICU. Assessment of family structure and functioning on a child's admission is prerequisite to guiding the parents during and after the intensive-care period. Specific factors of a family assessment that should be considered include current marital relationship(s), parental roles, communication and coping patterns, religious background, cultural values, and factors that identify this child as unique (e. g., only child, only son, only daughter, youngest, or eldest). Knowledge of family-coping style and modes of function provides essential insights for multidisciplinary, psychosocial intervention for the child and family throughout the hospital admission period.

Creating a Therapeutic Alliance
Parental participation is a widely accepted part of PICU care. It is believed that the child benefits from the presence of his parents, and some argue that parental participation positively influences the outcome of a child's illness. Conversely, Pochard et al. found a high incidence of depression and other major emotional disorders among family members of (French) ICU patients. Emotional issues may block the family's receptivity to information or requests for participation in decision making (29).
The level of detail initially supplied and the care team's expectations of family cooperation must depend on parental needs, preferences, and reaction styles (28). Therefore, physicians and nurses must evaluate the knowledge and receptiveness of the parents so that common goals can be set for the care of their child. Family-centered care goes well beyond the very important process of informing parents about the condition of their child. The goal is to forge a collaborative relationship based on mutual respect and open communication between the healthcare professionals and the parents—the therapeutic alliance. The foundation of this alliance rests on the consensus that the best interest of the child is of fundamental importance. At stressful interludes that test communication skills, reminders about the collaborative nature of care are very effective reinforcements for cooperation between the child's family and the PICU staff. This alliance provides a shared context for the team–family communications that are essential to care (38). It is also a framework for additional conflict-resolution and consensus-building measures (Table 3.3).
Table 3.2 Number of Divorces in the European Union from 1973 to 2003
Years European Union (25 countries)
1973 503,842
1983 718,318
1993 742,294
2003 955,688
Data from Eurostat: Accessed January 2007.
Recognition of Parental Needs
The needs and preferences of the parents must be discovered and factored into the care plan. PICU staff members must take a leading role in supporting parents during the PICU admission of their child. Several studies have been conducted to gain an understanding of parental experiences during a child's critical illness (11,13,21,35,41). The priorities that emerge from these studies are consistent over time and are mostly related to information given to parents by the professionals and the proximity of parents to their child (Table 3.4).
Studies that focused on parental experiences during the PICU admission identify that PICU parents experience less reassurance at admission due to the high level of acuity and the need for urgent medical interventions (10). As the PICU course continues, interaction with the medical team is a barrier for some parents and can eventually become a source of stress and anxiety. Minor failings in the discharge process generate increased anxiety in PICU parents, although they are generally satisfied with the aftercare. Fathers and mothers may respond to stressors differently in the PICU. Thus, fathers reported that the major stressors were witnessing technical procedures that their children required and trying to maintain a parental role during the PICU course. Surprisingly, professional staff communication was experienced as less of an issue (4). Every PICU team should carefully assess its own professional approaches to parental guidance.
Table 3.3 Strategies for Resolution of Team-Family Conflict
Sources of conflict Strategies for resolution
Uncertainty regarding reversibility of condition and potential for improvement Determine parents' understanding of likelihood that care will influence outcome
Provide support, data, and perspective
Suboptimal communication or multiple sources of care-provider input Encourage questions
Conduct family and team meetings
Incorporate major consultants' input into family meeting
Provide unified message from a single care provider
Parental concerns over invasive monitoring and/or therapy Explain downside of avoiding monitoring or therapy
Explain the need to balance multiple risks in the quest for optimal long-term outcome
Explore sources of parental anxiety
Setbacks or complications in the child's clinical course Focus on long view and the fact that inconsistent progress is typical of a complex PICU course
Explain time-limited trials of new therapies
Obtain subspecialty consultation
Feelings of powerlessness Emphasize parents' role on the care team
Clarify parental expectations regarding their role in decision making
Reassure parents regarding the essential role of parental love, support, and encouragement
Concerns regarding pain Ensure parental involvement in pain score assessments and patient-, parent-, or nurse-controlled analgesia
Fear regarding possible death of the child Validate risk of death and provide context
Explain aspects of integrative view of multisystems management—care of the whole child
Encourage parents to articulate their personal and family experiences with loss
Table 3.4 Parental Needs in the PICU
Knowing how the child is treated
Being with the child
Feeling that hope exists
Participating in the care
Unrestricted visiting
Receiving honest answers from the healthcare team
Receiving understandable information
Receiving daily information
Having a place to rest near the PICU
Receiving empathy from professionals
Family-centered Care
In pediatric critical care, the philosophy of family-centered care is a well-known concept. However, the elements of family-centered care are not always clearly understood. This confusion has led to wide variation in practice and results (1,18). The most comprehensive description of family-centered care is based on six dimensions, which are related to the roles of the professionals and the parents (Table 3.5). Pediatric critical care physicians and nurses must emphasize effective interventions for the improvement of family-centered care.
Regarding the respect for the child and family, global attention to equity in healthcare for all children and parents is

a critical priority. Inconsistencies in the approach to children and parents that are related to recurrent discrimination result in inconsistent access to healthcare and differential treatment. Children from ethnic minorities may experience significant difficulties in accessing healthcare, compared with children from majority groups. Disparities in access to care and quality of service may arise from differences in insurance coverage, economic means, language barriers, cultural competency, geography, or ongoing internecine conflict. Healthcare professionals must be aware of the barriers faced by parents and respect the cultural diversity of their patients.
As detailed in the previous section, providing information and education to parents builds a basis for collaboration in the care of the critically ill child. Effective and understandable communication between parents and professionals decreases parental stress and anxiety and fosters trust.
Coordination of care in a PICU entails collaboration with other departments, such as the emergency room and the pediatric wards. A PICU is by nature a transitional unit, with admissions and discharges frequently having other addresses within the medical center. The PICU team must carefully coordinate transfers to precisely address multiple facets of care, such as basic daily care, diagnostic tests, procedures, and consultations. For parents, the continuity of these processes becomes visible only when communications from the professionals are timely, accurate, and linked to a planned time schedule.
Parents are, by nature, concerned about physical support to their child with regard to pain and comfort, and this concern influences parental equilibrium. Incomplete communication about either anticipated painful procedures or needed pain control increase parental stress. The explanation and transparent use of validated pain and comfort assessment instruments can improve the recovery of the critically ill child and the well-being of the parent (6).
Table 3.5 Six Dimensions of Family-Centered Care
Respect for the child and family Respect of multicultural and diversity issues, such as race, ethnicity, rituals, norms, values, beliefs, and socioeconomics
Information and education Communication and teaching in an understandable language
Coordination of care Timely and accurate coordination of care within a single unit and between units
Physical support Prevention of suffering from pain and discomfort
Emotional support Support that facilitates the family's emotional and spiritual needs
Involvement of parents An open and flexible organization that facilitates parental participation in decision making and care based on the needs of child and family
Emotional support to parents hinges upon recognition of the traumatic stress symptoms that are common among parents in the PICU. Parent educational and support programs may be valuable in the PICU for both short- and long-term improvement of parents' mental health. Although identification of parental stress and coping strategies in the PICU has been studied extensively, effective interventions to reduce stress are limited in scope. An effective example is the COPE program—Creating Opportunities for Parent Empowerment—which uses

educational media about the emotions and behaviors of sick children to improve the psychosocial outcomes of critically ill children and their mothers (24). This educational-behavioral intervention may decrease the incidence of posttraumatic stress disorder among mothers 1 year after PICU admission of their child.
The involvement of parents in PICU care is widely considered best practice. Physicians and nurses should provide open visiting hours, participation in care, and parental involvement in decision making. Parental presence during invasive procedures and medical rounds should be considered.
The current multicultural changes in communities and societies require professionals to be aware of the cultural diversity in the functioning of the family. Knowledge and understanding of various religions and beliefs are necessary to provide the best possible family-centered care. Family-centered care should not be practiced from a general viewpoint but should always be based on individual needs and preferences of the child, parents, and family members.
Recovery and Reintegration After Critical Illness
Although discharge from the hospital after critical illness is a joyous occasion, the challenges for the child and family may continue if the child has a chronic illness or was left with sequelae after a prolonged PICU stay. These challenges are often physical, psychosocial, educational, and financial in nature. Preparing the family for reintegration into family and community life requires an action plan that the PICU team must set in motion.
Discharge Planning
Discharge planning represents the process by which parents are given an integrated package of instructions for disposition, medications, medical equipment, diet, and medical follow-up that will facilitate further recovery and health maintenance for the child. Although the effectiveness of discharge planning in reducing readmission rates or mortality is controversial, parents desire an integrated process by which to incorporate the vast amount of information required to care for a child with a chronic illness after intensive care (30). The discharge planning process is more likely to be successful from the parent's perspective if it is coordinated by a single person or through a single source. That person is often a nurse who combines an understanding of the disease process and the patient's hospital course with an intimate knowledge of community resources that the patient will need in the future. Some of the major objectives of discharge planning are listed in Table 3.6.
Table 3.6 Discharge Planning Objectives
Determine best practical disposition (rehabilitation hospital versus home).
Help parents gain access to insurance programs and other financial services for children with chronic illnesses.
Ensure that parents are trained in cardiopulmonary resuscitation and the use of relevant medical technology.
Arrange for home nursing.
Arrange for a medical technology company to service medical equipment in the home.
Instruct parents on discharge medications and work with physician staff to simplify the medication list where possible.
Connect the parents with support and patient advocacy groups.
Give the family a realistic understanding of the challenges they face.
Spread hope and optimism to the child and family.
Physical Aspects of Recovery and Reintegration
At the most basic level, the child returning home after a prolonged PICU stay has several physical needs. Prolonged mechanical ventilation (>1 week) increases the risk for weakness secondary to critical illness polyneuropathy or myopathy (5). Such patients may still be weak at the time of discharge to home. In addition to good nutrition, family members can provide physical therapy, which serves both to improve mobility and strength and provide an opportunity for bonding and

renewing alliances with the child. Newborns and infants may be malnourished after a prolonged PICU stay but recover quickly by 6 months (17). With proper attention to nutritional support during the PICU stay, older children generally avoid malnutrition altogether. Nevertheless, parents require very specific instructions on proper diet for the returning child. When possible, oral feeding should be encouraged, because it also provides an opportunity for parent-child bonding. However, some children, especially those with severe neurologic disability, require tube feedings to maintain adequate caloric intake. Conversely, a small subset of patients with morbid obesity and upper airway obstruction requires caloric restriction as part of the home therapeutic plan.
Technologic Aspects of Recovery and Reintegration
Numerous technologic devices now support care in the home. In fact, they have become so ubiquitous that physicians might automatically assume that every family can simply adapt to their usage. These devices range from mechanical ventilators to feeding tubes, dialysis machines, infusion pumps, and monitoring devices. In addition, many children have implanted devices (defibrillators, ventriculoperitoneal shunts, etc.). Although these devices may not require active parental intervention, they may nevertheless fail, making it imperative that parents understand the signs and symptoms of device failure so that they may obtain prompt medical intervention. Most devices have achieved a remarkable safety record and are clearly beneficial in extending the lives of chronically ill children outside of the hospital (2,37). However, parents must understand the technology and its use with their child, know how to troubleshoot problems, and have adequate backup supplies and a backup power source. Adequate preparation in these areas will maximize both the safety of the child and the psychologic health of the parents.
Most families develop rather astounding mastery of the technical details. The far greater challenge is to adapt to the disruption of “normal” family life that occurs during the care of technology-dependent children. Alarms ring. Interventions must be performed on schedule. Changes in the child's condition require parental adaptation. These three events will inevitably stress the normal rhythm of family life. Parental sleep deprivation often results (15). A physician's responsibility is to help the parents decide whether their family unit has the strength and resilience to cope with the technology-dependent child in their home. If the answer is yes, then parents and medical professionals should work together to devise a reasonable care schedule that draws on the strengths and skills of all members of the immediate family, supported by visiting nurses and other medical professionals. Such a schedule should allow for respite for each member in the immediate family. If the answer is no, then the physician should assist the family in finding a pediatric chronic care hospital.
Psychologic Aspects of Recovery and Reintegration—The Child
A short visit to the doctor may frighten a child. A prolonged stay in a PICU marked by vital-organ failure, invasive procedures, and separation from family and familiar surroundings may lead to lasting neuropsychiatric damage in the form of posttraumatic stress disorder (PTSD, Table 3.7). The Diagnostic and Statistical Manual of Mental Disorders (DSM IV) defines PTSD as a clinical syndrome following extreme traumatic stress that is accompanied by fear, agitation, recurrent intrusive thoughts, avoidance of stimuli associated with the trauma (or generalized withdrawal), and persistent physiologic arousal for >1 month after the traumatic event (3). If symptoms occur within 1 month after the traumatic event, they are labeled “acute stress disorder” and predict later PTSD. This type of reaction appears to be associated with the severity of the critical illness and with the number of invasive procedures (33). However, the origins of this disorder are not fully understood, because it may occur among children who appear to have been adequately sedated for invasive procedures. Yet, the consequences of PTSD are quite clear in the form of diminished intellectual and social functioning, heightened parental stress, and even decreased immunocompetence (39). Up to 62% of children who survive critical illness will have symptoms of posttraumatic stress, and 10% will carry the clinical diagnosis of PTSD.
Table 3.7 Diagnostic Criteria and Management of Posttraumatic Stress Disorder
Diagnostic criteria
History: Extreme traumatic stress (may occur during PICU stay)
Symptoms: Fear, agitation, recurrent intrusive thoughts, aggressive behaviors, avoidance of stimuli associated with the trauma (or generalized withdrawal), persistent physiologic arousal (hypertension, tachycardia) for >1 month after PICU stay
Management Strategy
Screening for symptoms prior to hospital discharge
Explanation and counseling for the parents
Psychiatric evaluation of the child (for possible cognitive or pharmacotherapy)
Notification of the primary care physician and the school*
Development of specialized support and team approach*
* If authorized by the parents.
The pathobiology of PTSD appears to involve disordered emotional memory consolidation in the amygdala during a highly stressful event. Acute stress leads to a surge in catecholamine and glucocorticoid release. Data from experimental animals reveal that catecholamines activate adrenergic receptors in the amygdala and play a critical role in memory consolidation (12). Similarly, direct injection of a glucocorticoid agonist into the basolateral amygdala enhances memory consolidation (34).
Given the prevalence and destructive impact of PTSD, the authors recommend that every child who has endured a prolonged critical illness undergo screening for this disorder. The parents should be screened as well. If a diagnosis of PTSD is established, a simple explanation and demystification of the symptomatology opens the door for cognitive or

pharmacologic therapy for the child and/or parents, a context in which to understand the next stage of recovery, and empowerment of the family. The primary care physician and appropriate school officials should also be alerted. Without these interventions, the family is faced with a bewildering symptom complex.
Psychologic Aspects of Recovery and Reintegration—The Family
Even in the absence of a formal diagnosis of PTSD, the parents and siblings experience stress as they attempt to reintegrate the now chronically ill child after a PICU stay. Carnevale et al. identified six principal themes of this stress: (a) the reality of overwhelming parental responsibility, (b) the intense desire for a “normal” family life that seems no longer attainable, (c) confrontation with the outside world that seems to devalue the life of the chronically ill child, (d) social isolation, (e) uncertainty about the child's (or sibling's) feelings, and (f) a sense of unfairness and helplessness in the face of a moral order that allows child and family suffering. Despite the complex tensions produced by these feelings, most families also report a sense of enrichment by the presence of the injured or chronically ill child who is so demanding of their care (7).
Families need not be helpless in the face of this stress. The management strategy begins in the hospital with an explanation about the nature of the stress and reassurance that their response is common and expected under the circumstances. The next steps involve teaching parents about the behaviors and emotions that their child may display after hospitalization and fostering parental involvement in the child's physical and emotional care. Formal stress management techniques may also be beneficial. Such an approach is associated with reduced depression and stress among parents (24).
The financial burdens associated with the care of a PICU survivor may also be substantial if the child is left with chronic disability. Adequate health insurance is a tremendous help for these families, but out-of-pocket finances are still necessary for care, as indicated by the greater financial burden that low-income families assume even after controlling for insurance status (27). In the US and in some European countries, most families with a ventilator-dependent child can receive at least 8 hrs of in-home nursing assistance if federal support programs are utilized properly. A social worker or other medical professional knowledgeable in federal assistance programs for children with chronic disabilities should counsel the parents. The immediate family (as opposed to extended family or healthcare professionals) is the unit responsible for the delivery of the child's healthcare, and this formidable challenge is added to all the other responsibilities of a normal family. Healthcare professionals must therefore ensure that as much attention is directed toward fostering optimal functioning of the family unit as is directed to the child's medications (31).
Reintegration into the Community
The return to school exemplifies the milestone of reintegration into the community for the child. This milestone implies that major physiologic changes in the child are unlikely during the school day and that the child is mobile either via ambulation or wheelchair. While necessary, those conditions are hardly sufficient. Parents must educate teachers, the principal, and the school nurse about medications, medical equipment, behavior patterns, and special needs. Equally important is the parent's role as a relentless advocate for the child to receive the specialized services necessary to enhance his chances for learning and social adaptation. The primary care pediatrician must support the parents in this advocacy role and serve as a resource for the school in the individual child's case, and more generally by providing guidance on the proper nurturing of the disabled child within the school system.
Preparing for and Responding to Death
When a child's life comes to a premature end in the context of a PICU course, the hope and expectations that accompanied the entry into PICU care also end, and the reverberations in the lives of the child's family and community, and the lives of the PICU staff, cannot be overestimated.
Through the child who is the shared focus of their hopes and energies, parents and staff become part of a shared social order. Families, with their individual views and backgrounds, and staff members, with their various specific rules and rituals, meet each other around the bed of the dying child. To cope with the death of their child, parents need support from their relatives, friends, and the involved staff members. The staff has its own responsibilities, and a PICU should have a clear policy about how to act, what information is needed, how tasks are distributed among clinicians and parents, and sensitivity toward matters that may affect the end-of-life care, such as sociocultural specificities. In this section, some aspects of end-of-life care in the PICU will be discussed, with particular emphasis on parents and families.
Anticipating Loss
Whether a child dies suddenly and unexpectedly due to an accident or at the end of a long illness, the question remains: Can one ever be prepared?
Unexpected death shortly after admission complicates the supportive role of the PICU team as they struggle to care for a shattered family in shock. In the first busy moments of the child's PICU stay, no relationship exists between staff and family. They meet for the first time in one of the most tragic moments of life. Considering the overwhelming situation, it is helpful if one team member stays with the parents to explain the course of events and to outline necessary medical and legal procedures. In a case in which child abuse is suspected, parents have not only lost their child but have also become part of a police investigation. Even in this challenging situation, PICU caregivers must strive to remain supportive to parents, while providing appropriate medical information to child protective authorities and the police. If emotions threaten to overwhelm the PICU team attending the death of a child abuse victim, it may be useful for specific team members to focus on parental support while others interface with government authorities.
Not every child dies suddenly. In cases of a severe chronic illness such as cancer, the process of dying may be dreaded but anticipated for some time. When death is expected, the

staff have the opportunity to prepare parents for the process of dying. In anticipation of the loss of their child, parents will experience pain and sorrow.
Although one may recognize similar patterns of grief and distress in families of different backgrounds, each situation requires an individual approach. After all, parents do not leave everything behind in the airlock; they come in with their hopes, emotions, expectations, cultural rituals, and expressions of grief. Each parent must find or be given a role in the end-of-life care of the dying child. The PICU team helps parents to develop their roles by listening, understanding, and helping them to interpret the unfolding events. Sometimes disagreements arise between the team and the family over end-of-life care. The resolution of these frictions may require support from a third party, often another professional member of the PICU team. The role of a social worker in the care and aftercare of parents is particularly useful in these situations.
Parents should be prepared for the changing appearance of the child, including gasping and other potential responses of the dying body. The appearance of a dying child may provoke not only grief, but also fear, alarm, and even revulsion among some family members.
The family should also be given advice on pragmatic issues, such as access to external support networks, funeral arrangements, death registration, and postmortem examination. Informing family is crucial, but generally, other details are as important. The staff must seek out insights into the specific questions, wishes, fears, and expectations that parents might have. Some parents want to take their child home before dying or initiate religious or spiritual rituals. These requests may require planning and communication with other parties or authorities.
In case of active withdrawal of life support, most children die within minutes or hours, but it does not always happen this way. Nor does the decision to limit life support always end the process swiftly. It can be decided to switch to a nonreanimation (or do not resuscitate) policy that includes continued maintenance care. With this decision, the staff enters a new treatment trajectory, usually without laboratory tests or frequent checking of vital signs. While the nursing care remains central, the medical technology is relegated to the margin. This trajectory calms hectic activity around the child but also marks the beginning of a period of anxious waiting for the parents. After all of the intense activity and exhaustion of the previous weeks or even months, time slows, and getting through the day becomes a different sort of challenge, one that may be best filled by family members bonding with each other—around and with the dying child.
Modes of Death
Modern technology has multiplied the modes of death in a PICU. Possible modes of death in the PICU include death despite active treatment, brain death, limitation of critical care (nontreatment), or active withdrawal of life support. Each of these modes of death occurs within a specific sociocultural context. Goh et al. stress the fact that limitation of critical care as a common mode of death is based on a Western ethical frame of justification and may therefore be inappropriate for people with other cultural backgrounds (14). An increasing cultural diversity in most societies makes it important to take these cultural differences into account. [For an extensive discussion on the implications of cultural differences in end-of-life care, see appendix D, pp. 509–552, of the Institute of Medicine publication When Children Die (22)]. Factors in planning for the mode of death extend beyond medical considerations and include the family's social relations, religion, and responsibilities, as well as the previous personal experiences of the physicians—relationships and factors that explain some of the various modes of death chosen within the context of Western medicine (14). The death of a child in a PICU in Anglo-Saxon–influenced countries is the outcome of decision making that includes a deliberative process in which the parents participate. In the more Greek/Latin-influenced part of Europe, most children in the PICU die despite active treatment (9). In Europe, clinicians do not give away the final authority over withdrawal of life support. In Islamic culture, withdrawal of life support may not be an option. At the other end of the spectrum, the Dutch parliament recently passed a law specifically allowing various categories of physician-assisted dying for children over 12 years of age (40). Despite these evident differences, every parent is unique and acts accordingly, and these actions may occur despite a specific cultural attitude to the contrary.
Decision Making and End-of-life Care
The physician usually initiates the discussion regarding discontinuation of treatment, which does not imply that parents do not think about this option. Many times, they consider this possibility even before the physician raises the issue (25). The choice between withdraw and limitation of life support is not always clear for parents. To them, every option may carry too much guilt to allow a choice: If they choose continuation of care, they might keep their child alive longer, but this time might be filled with suffering; if they decide to withdraw treatment, they may have the sense that something could have been done after all and that they took that chance away. Although at this juncture some parents defer to physicians, they must live with the ultimate decision for years to come. Therefore, involvement of families in this decision-making process should be standard of care.
Notwithstanding the requirement of parental consent, it is the medical team that takes the ultimate responsibility. Leaving the decision entirely up to the parents is impossible in light of the fact that they often lack the knowledge to correctly interpret all of the information. Additionally, the stressful circumstances in which parents must face these issues may hamper objectivity. Therefore, most PICU teams attempt to find a position that respects parental authority without leaving parents alone in the decision. Approaches to parental responsibility then become the crux of the matter.
To be able to participate effectively in the decision-making process, parents must be well informed about their child's condition, level of discomfort, prognosis, and available treatments and their consequences. Information about resources for additional advice and support should be clear. Evidence suggests that most parents prefer full disclosure of information. For many, being fully informed helps them to comprehend and give meaning to the situation and to participate in the decision-making process. After listening carefully and understanding the parental and family circumstances, the medical staff should

advise parents gently, yet clearly, about the best option in their medical opinion. Parental assessment of the child's physical and emotional suffering plays an important role in the decision about the continuation of life support (25). It should be clear for parents that palliative care, with its focus on prevention and relief of physical and emotional suffering, is a major part of the overall care policy throughout the remainder of the child's life and that it does not necessarily preclude curative or life-prolonging care (22).
Practice patterns regarding the involvement of the child in the decision-making process vary widely and depend on their age, knowledge, level of understanding, and physical condition, which does not imply neglect of the child's wishes or refusal to tell them about their condition. Where possible, children should be informed about their condition, and their wishes should be respected.
Nurses are often the team members who are most involved in the care of the child and the support of parents throughout the PICU stay. They instruct the family about their child's treatment, show them around the PICU, inform them in everyday language about the child's condition, and function as their touchstone. Despite the primacy of this relationship, many studies show that bedside nurses are under-represented in decision-making meetings (22).
Death and Dying
The death of a child is a devastating experience for the family and particularly for the parents. It shatters the ground on which they have built their lives and challenges their personal cosmic order. Parents try to preserve the relationship with their dying child by being present and by touching and talking to their child. The need to be in the immediate presence of the child before, during, and after death may also be based on a need to maintain connection with the child (23). In times of existential need, people tend to search for the meaning of life and death. Meert et al. stress that a spiritual element is associated with the efforts of parents to stay connected with their child. Memories of specific events, such as holding the child on their lap, or tangible mementoes can be considered in the light of the search for meaning and the need to be connected that ensue over the months following the death of a child. Other related imperatives include the parents' acceptance of the child's death and their perception that care of their child has been given with compassion and respect and that the ultimate trust invested in the care team has been upheld. Ideally, families should be offered a “family advocate”—someone separate from the PICU team whose sole function is to comfort and advocate on behalf of the family. The parents might prefer the presence of a pastoral care provider as their advocate, especially when rituals such as praying and reading sacred texts are vital elements that strengthen the family through hope and faith. The PICU team should know the parents' religious affiliation and avoid misunderstandings by first checking to determine if specific pastoral care is desired. Awareness of conflicting needs between parents may avoid friction that exacerbates negative affects at the most difficult of times.
In cases in which it is age appropriate, sibling involvement in end-of-life care is an important part of their bereavement process. Their grief and their capability to help or understand should not be dismissed. However, young children are not always able to comprehend the situation or to interpret the intense grief of their parents, and it is essential to regularly reevaluate their emotional and intellectual capacity to deal with the situation.
Forms of Support
During the process of dying, the staff carefully tries to deal with the needs of children and their families. The family tries to cope with their situation by finding meaning in what is happening and by living day to day (22). Through a constant redefinition of the situation they are confronting, parents try to prepare for death and, at the same time, preserve their relationship with their child. Involvement of family in the end-of-life care of their child is a way to endorse the parental role as being the child's original caregiver, provider of love, and decision maker (26). Marginalization of parents in the process of care will result in feelings of helplessness. Preservation of the child-parent relationship is an important parental coping mechanism, and fathers and mothers may exhibit different types of coping mechanisms. If one parent (often the father) withdraws when he knows his child is dying, the reasons should be explored and an opportunity provided to include the withdrawn parent in the planning of care, if possible.
Some studies reveal that parents experience communication with staff as problematic (26). They feel that seeking information about their child's condition is time consuming and that they have lost control over their child. It is important that staff members endeavor to gauge the appropriate level of medical specificity when they communicate with parents. Some parents prefer detailed information about every lab test result and ventilator setting, but too much detail and technical information can confuse parental perceptions of the child's overall condition and experience.
Staff members are an important part of the support network of families. In addition to providing them information, they offer emotional care as well. By listening to the hopes and fears of parents, staff members create room for parents' emotional expressions in which they can foster strength and trust. Some studies show that parents desire a certain level of reciprocity in emotional expression (26). Staff members who are willing to show their own feelings of consideration are perceived as more authentic and easier to turn to than those who do not allow themselves to express their feelings of empathy. If a primary nurse has been assigned to the child during the entire admission, she is likely to best know the patient and family. The primary nurse can help to explain the family members' style of emotional expression to the other caregivers. A style of communication that is informed by these insights is an important resource. Additionally, open admission of sorrow for the loss can be helpful for parents, allowing them to perceive that their child is not just a “routine case” for staff members (20).
Responding to Loss
After the death of a child, the equipment is turned off and the monitor falls silent, but not all is yet said and done. Once again, those involved change their frame of reference and switch to the set of priorities appropriate after a child has died. These actions are marked by doing things in slow motion, by respect, and

by enhancing the language of compassion while diminishing technical data. Now, the toiling ventilators, blinking monitors, and beeping alarms are silenced. There is only tranquility, and all technology is brushed aside. If the child's life in the PICU was always entwined with the technology around his bed, these ties can be severed after death, ending a “hybrid” existence and leaving only the child again.
Coping Strategies
The emotional bond between parent and child lingers after a child's death. Staff members aid parents in coping with their loss by helping them toward the recognition that strengthening the emotional bond with their child helps them to integrate the loss. Good contact—even after their child has died—reduces parents' sense of guilt and improves their self-worth. After their child's death, parents are allowed to spend as much time alone with their child as they wish and bid farewell in quietude. In addition to privacy, social and religious rituals may be important parts of the bereavement process. Physical care, such as touching, bathing, and dressing their child after death, may be an important part of the bereavement process. These activities can act as a corridor for the (nursing) staff in their effort to help parents with their grief. With this aim in mind, some medical centers offer to photograph the child after death. If parents do not wish to have these photographs immediately, they may be stored in the record for future availability. Other mementoes, such as a footprint or a lock of hair, may be offered as helpful keepsakes during the grieving process and beyond.
It is important to create a space of privacy for everyone involved when a child is dying. However, a separate room is not always available. Closed curtains do not act as walls. The limited space makes it impossible for the staff to shield other parents from unforeseen emergencies. As such, the death of a child in the PICU is an event that also concerns other families on the ward. They are aware of what is happening, death and grief are right in front of them, and this can catalyze anxiety and despair, because the situation of another family represents a possible personal future that they dare not consider. The PICU team should counsel parents to avoid identifying their child's condition with those of other patients (20).
Follow-up Meetings—Moments of Reflection
Follow-up meetings are crucial to help parents deal with the loss of their child. They are equally important for parents who lose a child suddenly and for those for whom the child's death was expected. Bereavement meetings offer the opportunity for reflection on the death of the child in several ways, and Cook et al. propose some key elements to be included in them (8). The staff can explain in more detail what has happened on the basis of all of the available information. The parents can use this meeting to express their concerns and ask for clarification. To accomplish these objectives, a follow-up meeting should be delayed for at least 8 weeks, which allows the staff to collect relevant information (including postmortem results when available) and affords families the time to reflect on what has happened and to prepare their questions. Having knowledge of how a life ended makes a world of difference. In their looking back on their child's treatment and death, the parents and staff reflect on the interventions applied and the decisions made. What was once an erratic series of events is now a logical story that is subject to interpretation. A visit to the PICU where the child died can be a crucial element of the follow-up and helpful in the grieving process but must be done on a voluntary basis only. Follow-up meetings are specifically aimed at a form of retrospection that allows parents to move on with their lives.
The Supportive Network
It is important to ensure that adequate support is available in addition to the PICU team. Indeed, some investigators express their concern about the dominance of staff members as the primary support network during the process of dying (25). They stress the need for families to also maintain and strengthen their private support network. Contact with staff will decrease dramatically after the child has died, whereas friends, family, and community may be supportive throughout the entire bereavement process. For families that have them, networks of family members and close friends can be considered central actors in the care of parents and siblings. It is also advisable to facilitate the involvement of other support networks, such as religious communities, palliative care programs, and local or national support networks, to establish continuity of care after death. In addition to this web of support, the availability of specific community services should be communicated to the parents.
Grief Experiences of PICU Staff
Staff members will experience a wide range of emotions while caring for a dying child. When a child's stay in the PICU lasts several months, the emotional bonding process may cause staff members to identify with the parents (28). Caring for a chronically ill child frequently leads to a high level of attachment. Strong emotional engagement does not always distort professional judgment—it may cause staff to better relate to families' responses. Nor is emotional detachment always a virtue, given that it can blind people's awareness of suffering and lead to medical decisions that are insensitive to parents' needs. Furthermore, parents understand the genuine emotional expressions of staff as supportive, which helps them in their process of grief.
Considering the high level of involvement of PICU staff in the dying process and their exposure to many deaths, careful attention to their grief experience is also necessary. PICU staff members face a difficult task, considering the fact that they will be confronted with the intimate and intense emotions of families. More than casual and occasional support from colleagues, family, and friends is needed to help staff through these cases. A study of the grief experiences of PICU nurses describes how the intensity and duration of their grief are related to personal experiences and to their relationships with the child and his family (32). High levels of attachment to the child and/or the family affect the depth and duration of feelings of sadness. More-experienced nurses feel less overwhelmed by their feelings of sadness and anger than do their less-experienced colleagues. Ideal notions about why a child should die, in what way, and with what type of involvement from the PICU staff may clash painfully with the reality of the situation. Some argue that situations of dissonance have a strong effect on grief responses (32). In other words, managing one's own grief is an ongoing learning process, and more-experienced colleagues can play a supportive role in this process. To cope with their own feelings of grief, some PICU nurses share their feelings with colleagues, whereas others prefer a more private sphere in which to express their sadness. Other coping strategies are self-nurturing, maintaining a balance between involvement and detachment

while the child is dying, and seeking closure of the relationship with the family after the child has died.
PICU staff benefit greatly from an understanding of the relational dynamics among family and staff. Moments of reflection, embedded in a structured way in the PICU practice, can act as a space in which to resolve the difficulties and intense emotions that PICU staff experience during end-of-life care. Although relief sometimes prevails after the death of a child, informal discussion can also trigger questions about the management of the PICU course that require a multidisciplinary meeting. Retrospective multidisciplinary deliberations in which the entire PICU team reviews the cases of children who have died are essential forums and should not be swept aside. However, these moments of reflection tend to be sacrificed in the hectic rhythm of the PICU, a circumstance that can make nurses and residents feel that possibilities do not exist for the presentation and processing of their views on specific treatment policies. Obviously, efforts should be made so that this situation is avoided.
Figure 3.1. Summary map of US child safety laws. The presence or absence of laws requiring three key initiatives for child safety is coded according to the key (lower right) for the 50 United States and the nation's capitol, the District of Columbia (DC). White signifies the absence of laws mandating action on any of these key. Other codes denote the existence of these laws individually in pairs, or altogether. Data have been abstracted from the American Academy of Pediatrics. 2005 State Legislation Report. Legislation pending at the end of the 2005 legislative sessions is not included in this figure. Map template downloaded from, accessed January 2007.
The Role of the Pediatric Critical Care Professional in Societal Responses to Child Morbidity and Mortality
Modeling Advocacy
The PICU provides willing observers with a unique window on society: Themes and patterns of childhood illness and injury can be indicators of shortcomings in public policy. Despite these insights, the pressures of patient care, institutional and academic responsibilities, and professional development leave little time in the work life of the critical care practitioner for the pursuit of child advocacy. Moreover, most healthcare professionals are not conversant with the process and bureaucracy of legislative bodies and human-service delivery systems. These realities are powerful supporters of the status quo. However, strategies for the reduction of preventable disease and injury are essential elements of our commitment to the improvement of child health and safety. Furthermore, each publicly visible effort that the pediatric critical care community makes in this regard has the potential to inspire the next generation of PICU professionals and child health advocates.
Three of this chapter's authors were presented with an opportunity to “act locally” in this regard. During the 2004–2005 heating season, the Johns Hopkins PICU treated seven children who were burned as a result of the use of open-flame heat sources in homes in which power had been disconnected following lapses in payment of utility bills. Five of these seven children died. In several instances, the families were in the process of applying for funds through the Maryland Energy Assistance Program when their power was turned off. One of the PICU attending physicians mobilized an energy task force within the medical center to address utility company policy. These efforts focused on the process of power termination in homes with small children. The energy task force included a second PICU attending physician, the medical director of the pediatric burn center, the pediatric trauma coordinator, the medical center's vice president and general counsel, a social worker from the institution's child injury prevention center, and public affairs and government relations staff. They met serially for several months with the Maryland Department of Human Resources, the Public Service Commission, and the utility companies to ensure that applications for energy assistance would be processed in a timely manner to avoid unnecessary power termination. When a bill to revise the Energy Assistance Program Act was introduced in the state legislature, one of the intensivists seized the opportunity to provide testimony at the hearing and proposed an amendment to give special consideration to low-income households with children. Both the Department of Human Resources and the Senate Finance Committee looked favorably on this amendment. The bill, with this amendment included, passed both the state Senate and House on a unanimous vote (Chapter 119 of Senate Bill 129 of the 2005 Legislative Session of the Maryland General Assembly).
Passage of that bill was a catalyst that led to the formation of a formal work group that met to address power terminations to homes with children. It was an inclusive work group that included the Johns Hopkins energy task force, the Office of Home Energy Programs, the Public Service Commission, the Office of Peoples Council, and utility companies from across the State. It was a difficult and, at times, contentious process that required the skills, insights, and energies of every member of the Hopkins task force. However, in the end, all parties were able to reach a binding, nonregulatory settlement agreement to minimize the possibility of power termination. Elements of this amended agreement included expansion of the hours for energy-assistance inquiries and of payment plan options, as well as a 55-day grace period. At the time of this writing, the incidence of pediatric burn injuries following energy shut-offs has fallen dramatically in the State of Maryland, and the energy task force is currently monitoring the situation for signs that the system is in need of further adjustment.
The Challenge
Society entrusts pediatric critical care providers with the care of its sickest children. An extension of that trust is the confidence that caring professionals will act on opportunities for responsible citizenship by working toward the improvement of child health and safety through legislative process when necessary.
Toward this end, it is important to remember that preventable injury continues to be a leading cause of childhood death (19). Head injuries and multiple trauma cases that result from motor vehicle collisions, bicycle accidents, and other vehicular mishaps are regular features in the PICU census and remain far too common contributors to death and disability in childhood [State Legislative Report for 2005 of the American Academy of Pediatrics (AAP), available at]. Data on the progress of three types of child safety legislation have been abstracted from this AAP report and presented in summary graphic form in Figure 3.1. The incomplete status of several legislative agendas may resonate with series of patients that present to any major pediatric center. Although seat belts and infant seats are required throughout the US, booster seats are on the law books in only 33 states and the District of Columbia. Bicycle helmets are required in only 26 states (and the District), and the containment of firearms is mandated in only 18 states. Legislative agendas on these and other topics for localities in the US may be tracked via listings at

Conclusions and Future Directions
Research into the impact of the PICU over the past 5 years has yielded important indicators of difficulty with communication and adaptation in the PICU environment. The next step includes the development and testing of templated benchmarks and maintenance programs that can be used to improve the management of PICU stressors for both families and PICU staff. Reduction in the incidence of psychosocial sequelae for our patients may require the development of multidisciplinary PICU follow-up programs that include the critical care team. The challenge of PTDS should be addressed similarly through integrated strategies for the prevention, early detection, and treatment of graded severities of this disorder. Specific data are needed regarding the association of PTSD with specific sedative and analgesic strategies during invasive procedures in the PICU (33).
PICU care at the end-of-life could be improved by developing the broad implementation of training and team building for care providers, using real-time interaction with standardized patients (36). These efforts must encompass the entire family of PICU professionals, including all practitioner- and student-level front-line personnel: physicians, nurses, respiratory therapists, extracorporeal membrane oxygenation specialists, social workers, psychologists, and pastoral care providers.
Finally, a coordinated and broadly based effort is necessary to more effectively and immediately channel awareness of pressing child health-related issues into legislative action.
The authors thank Drs. Jason Custer, Jamie Schwartz, and Hal Shaffner for helpful discussions.
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