Separation and Loss

Separations may be due to temporary causes, such as vacations, parental job restrictions, natural disasters, or parental or sibling illness requiring hospitalization. More long-term separations occur due to divorce, placement in foster care, or adoption, while permanent separation may occur due to death. The initial reaction of young children to separation of any duration may involve crying, either of a tantrum-like, protesting type or of a quieter, sadder type. Children’s behavior may appear subdued, withdrawn, fussy, or moody, or they may demonstrate resistance to authority. Specific problems may include poor appetite, behavior issues such as acting against caregiver requests, reluctance to go to bed, sleep problems, or regressive behavior, such as requesting a bottle or bed-wetting. School-aged children may experience impaired cognitive functioning and poor performance in school. Some children may repeatedly ask for the absent parent and question when he or she will return. The child may go to the window or door or out into the neighborhood to look for the absent parent; a few may even leave home or their place of temporary placement to search for their parents. Other children may not refer to the parental absence at all.

A child’s response to reunion may surprise or alarm an unprepared parent. A parent who joyfully returns to the family may be met by wary or cautious children. After a brief interchange of affection, children may seem indifferent to the parent’s return. This response may indicate anger at being left and wariness that the event will happen again, or the child may feel as if he or she caused the parent’s departure due to magical thinking. If the mother who frequently says “Stop it, or you’ll give me a headache” is hospitalized, the child may feel at fault and guilty. As a result of these feelings, children may seem to be more closely attached to the other present parent than to the absent one, or even to the grandparent or baby sitter who cared for them during their parent’s absence. Some children, particularly younger ones, may become more clinging and dependent than they were before the separation, while continuing any regressive behavior that occurred during the separation. Such behavior may engage the returned parent more closely and help to re-establish the bond that the child felt was broken. Such reactions are usually transient and within 1-2 wk, children will have recovered their usual behavior and equilibrium. Recurrent separations may tend to make children more wary and guarded about re-establishing the relationship with the repeatedly absent parent, and these traits may affect other personal relationships. Parents should be advised not to try to ameliorate a child’s behavior by threatening to leave.

Divorce

More sustained experiences of loss, such as divorce or placement in foster care, can give rise to the same kinds of reactions noted earlier, but they are more intense and possibly more lasting. Currently in the USA, about 40% of marriages end in divorce. Divorce has been found to be associated with negative parent functioning such as parental depression and feelings of incompetence, negative child behavior such as noncompliance and whining, and negative parent-child interaction such as inconsistent discipline, decreased communication, and decreased affection. Greater childhood distress is associated with greater parental distress. Continued parental conflict and loss of contact with the noncustodial parent, usually the father, is common. Two of the most important factors that contribute to morbidity of the children in a divorce include parental psychopathology and disrupted parenting before the separation. The year following the divorce is the period when problems are most apparent; these problems tend to dissipate over the next 2 yr. Depression may be present 5 yr later, and educational or occupational decline may occur even 10 yr later. It is difficult to sort out all of the confounding factors. Children may suffer when exposed to parental conflict that continues after divorce, and in some cases may escalate. The degree of inter-parental conflict may be the most important factor associated with child morbidity. A continued relationship with the noncustodial parent, as long as there is minimal inter-parental conflict, was a factor associated with more positive outcomes.

School-aged children may respond with evident depression, may seem indifferent, or may be markedly angry. Other children appear to deny or avoid the issue, behaviorally or verbally. Most children cling to the hope that the actual placement or separation is not real and is only temporary. The child may experience guilt by feeling that the loss, separation, or placement represents rejection and perhaps punishment for misbehavior. Children may protect a parent and assume guilt, believing that their own “badness” caused the parent to depart. Outwardly blaming parents may be perceived by a child as fairly risky; parents who discover that a child harbors resentment might punish him or her further for these thoughts or feelings. Children who feel that their misbehavior caused their parents to separate or become divorced have the fantasy that their own trivial or recurrent behavioral patterns caused their parents to become angry with each other. Some children have behavioral or psychosomatic symptoms and unwittingly adopt a “sick” role as a strategy for reuniting their parents.

In response to divorce of parents and the subsequent separation and loss, older children and adolescents commonly show intense anger. Five years after the breakup, approximately one third of children report intense unhappiness and dissatisfaction with their lives and their reconfigured families, another one third show clear evidence of a satisfactory adjustment, whereas the remaining third demonstrate a mixed picture, with good achievement in some areas and faltering achievement in others. After 10 yr, approximately 45% do well, but 40% may have academic, social, and/or emotional problems. As adults, some are reluctant to form intimate relationships, fearful of repeating their parents’ experience. Parental divorce has a moderate long-term negative impact on the adult mental health status of children who had experienced it, even after controlling for changes in economic status and problems before divorce. Good adjustment of children after a divorce is related to ongoing involvement with 2 psychologically healthy parents who minimize conflict, and to the siblings and other relatives who provide a positive support system. Divorcing parents should be encouraged to avoid adversarial processes and to use a trained mediator to resolve disputes if needed. Joint custody arrangements may reduce ongoing parental conflict, but children in joint custody may feel overburdened by the demands of maintaining a strong presence in 2 homes.

The primary care provider may provide an important role for divorcing and divorced parents and their children. When asked about the effects of divorce, parents should be informed that different children may have different reactions, but that the parents’ behavior and the way they interact with each other will have a major and long-term effect on the child’s adjustment. The continued presence of both parents in the child’s life, with minimal inter-parental conflict, is most beneficial to the child.

Move/Family Relocation

A significant proportion of the population of the USA changes residence each year. The effects of this movement on children and families are frequently overlooked. For children, the move is essentially involuntary and out of their control. When such changes in family structure as divorce or death precipitate moves, children face the stresses created by both the precipitating events and the move itself. Parental sadness surrounding the move may transmit unhappiness to the children. Children who move lose their old friends, the comfort of a familiar bedroom and house, and their ties to school and community. They not only must sever old relationships but also are faced with developing new ones in new neighborhoods and new schools. Children may enter neighborhoods with different customs and values, and because academic standards and curricula vary among communities, children who have performed well in one school may find themselves struggling in a new one. Frequent moves during the school years are likely to have adverse consequences on social and academic performance.

Migrant children and children who emigrate from other countries present with special circumstances. These children not only need to adjust to a new house, school, and community but also need to adjust to a new culture and, in many cases, a new language. Because children have faster language acquisition than adults, they may function as translators for the adults in their families. This powerful position may lead to role reversal and potential conflict within the family. In the evaluation of migrant children and families, it is important to ask about the circumstances of the migration, including legal status, violence or threat of violence, conflict of loyalties, and moral, ethical, and religious differences.

Parents should prepare children well in advance of any move and allow them to express any unhappy feelings or misgivings. Parents should acknowledge their own mixed feelings and agree that they will miss their old home while looking forward to a new one. Visits to the new home in advance are often useful preludes to the actual move. Transient periods of regressive behavior may be noted in preschool children after moving, and these should be understood and accepted. Parents should assist the entry of their children into the new community, and whenever possible, exchanges of letters and visits with old friends should be encouraged.

Separation due to Hospitalization

Potential challenges for hospitalized children include coping with separation, adapting to the new hospital environment, adjusting to multiple caregivers, seeing very sick children, and sometimes experiencing the disorientation of intensive care, anesthesia, and surgery. To help mitigate potential problems, a preadmission visit to the hospital is important to allow the child to meet the people who will be offering care and ask questions about what will happen. Parents of children younger than 5-6 yr of age should room with the child if feasible. Older children may also benefit from parents staying with them while in the hospital, depending on the severity of their illness. Creative and active recreational or socialization programs with child life workers, chances to act out feared procedures in play with dolls or mannequins, and liberal visiting hours including visits from siblings are all helpful. Sensitive, sympathetic, and accepting attitudes toward children and parents by the hospital staff are very important. Health care providers need to remember that parents have the best interest of their children at heart and know their children the best. Whenever possible, school assignments and tutoring for the hospitalized children should be available in order to engage the child intellectually and prevent them from falling behind in their scholastic achievements.

The psychologic aspects of illness should be evaluated from the outset, and physicians should act as a model for parents and children by showing interest in a child’s feelings, allowing them a venue for expression, and demonstrating that it is possible and appropriate to communicate discomfort in verbal, symbolic language. Continuity of medical personnel may be reassuring to the child and family.

Parental/Sibling Death

Approximately 5-8% of U.S. children will experience parental death; rates are much higher in other parts of the world more directly affected by war, AIDS, and natural disasters (Chapter 36.2). Anticipated deaths due to chronic illness may place a significant strain on a family, with frequent bouts of illness, hospitalization, disruption of normal home life, absence of the ill parent, and perhaps more responsibilities placed on the child. Additional strains include changes in daily routines, financial pressures, and the need to cope with aggressive treatment options.

Children can and should continue to be involved with the sick parent or sibling, but they need to be prepared for what they will see in the home or hospital setting. The stresses that a child will face include visualizing the physical deterioration of the family member, helplessness, and emotional lability. Forewarning the child that the family member may demonstrate physical changes, such as appearing thinner or losing hair will help the child to adjust. These warnings, combined with simple yet specific explanations of the need for equipment such as a nasogastric tube for nutrition, an oxygen mask, or a ventilator, will help lessen the child’s fear. The primary care provider can be of great help in addressing these issues. Children should be honestly informed of what is happening, in language they can understand, allowing them choices, but with parental involvement in decision-making. They should be encouraged, but not forced to see their ill family member. Parents who are caring for a dying spouse or child may be too emotionally depleted to be able to tend to their healthy child’s needs or to continue regular routines. Children of a dying parent may suffer the loss of security and belief in the world as a safe place, and the surviving parent may be inclined to impose his or her own need for support and comfort onto the child. However, the well parent and caring relatives must keep in mind that children need to be allowed to remain children, with appropriate support and attention. Sudden, unexpected deaths lead to more anxiety and fear, because there was no time for preparation and uncertainty as to explanations.

Grief and Bereavement

Grief is a personal, emotional state of bereavement or an anticipated response to loss, such as a death. Common reactions include sadness, anger, guilt, fear, and at times, relief. The normality of these reactions needs to be emphasized. Most bereaved families remain socially connected and expect that life will return to some new, albeit different, sense of normalcy. The pain and suffering imposed by grief should never be automatically deemed “normal” and thus neglected or ignored. In uncomplicated grief reactions, the steadfast concern of the pediatrician can help promote the family’s sense of well-being. In more distressing reactions (such as those seen in traumatic grief of sudden deaths), the pediatrician may be a major, first-line force in helping children and families address their loss. Pediatricians’ involvement has become even more important since death of children has become less common. Fewer families have family members or friends who understand this experience. Hence, they turn to health care professionals more commonly for advice and support.

Participation in the care of a child with a life-threatening or terminal illness is a profound experience. Parents experience much anxiety and worry during the final stages of their child’s life. In one study at a children’s hospital, 45% of children dying from cancer died in the pediatric intensive care unit, and parents report that 89% of their children suffered “a lot” or “a great deal” during the last month of life. Physicians consistently underreport children’s symptoms in comparison to parents’ reports. Better ways are needed to provide for dying children, and to maintain honest and open communication, provide appropriate pain management, and meet the families’ wishes as to the preferred location of the child’s death, in some cases in their own home. Inclusion of multiple disciplines, such as hospice, clergy, nursing, pain service, child life, and social work, often helps to fully support families during this difficult experience.

The practice of withholding information from children and parents regarding a child’s diagnosis and prognosis has generally been abandoned as physicians have learned that protecting parents and patients from the seriousness of their child’s condition does not alleviate concerns and anxieties. Even very young children may have a real understanding of their illness. Children who have serious diseases and are undergoing aggressive treatments and medication regimens, but are told by their parents that they are okay, are not reassured by their parents. These children understand that something serious is happening to them, and they are often forced to suffer in silence and isolation because the message they have been given by their parents is to not discuss it and to maintain a cheerful demeanor. Children have the right to know their diagnosis and should be informed early in their treatment. The content and depth of the discussion needs to be tailored to the child’s personality and developmental level of understanding. Parents have choices as to how to orchestrate the disclosure. Parents may want to be the ones to inform the child themselves, may choose for the pediatric health care provider to do so, or may do it in partnership with the pediatrician.

A death, especially the death of a family member, is the most difficult loss for a child. Many changes in normal patterns of functioning may occur, including loss of love and support from the deceased family member, a change in income, the possible need to relocate, less emotional support from surviving family members, altering of routines, and a possible change in status from sibling to only child. Relationships between family members may become strained, and children may blame themselves or other family members for the death of a parent or sibling. Bereaved children may exhibit many of the emotions discussed earlier due to loss, in addition to behaviors of withdrawal into their own world, sleep disturbances, nightmares, and symptoms such as headache, abdominal pains, or possibly symptoms similar to those of the family member who has died. Children 3-5 yr of age who have experienced a family bereavement may show regressive behaviors such as bed-wetting and thumb sucking. School-aged children may exhibit nonspecific symptoms such as headache, abdominal pain, chest pain, fatigue, and lack of energy. Children and adolescents may also demonstrate enhanced anxiety should these symptoms resemble those of the family member who died. The presence of secure and stable adults who can meet the child’s needs and who permit discussion about the loss is most important in helping a child to grieve. The pediatrician should help the family understand this necessary presence and encourage the protective functioning of the family unit. More frequent visits to the health care professional may be necessary to address these symptoms and provide reassurance when appropriate.

Death, separation, and loss as a result of natural catastrophes and man-made disasters have become increasingly common events in children’s lives. Exposure to such disasters occurs either directly or indirectly, where the event is experienced through the media. Examples of indirect exposure include televised scenes of earthquakes, hurricanes, tsunamis, and the terrorist attacks in the USA on 9/11/01, with the subsequent news stories about anthrax and heightened states of alert. Children who experience personal loss in disasters tend to watch more television coverage than children who do not. However, children without a personal loss watch as a way of participating in the event and may thus experience repetitive exposure to traumatic scenes and stories. The loss and devastation for a child who personally lives through a disaster is significant; the effect of the simultaneous occurrence of disaster and personal loss complicates the bereavement process as grief reactions become interwoven with post-traumatic stress symptoms (Chapter 23). After a death that occurs as a result of aggressive or traumatic circumstances, access to expert help may be required. Under conditions of threat and fear, children seek proximity to safe, stable, protective figures.

It is important for parents to grieve with their children. Some parents feel they want to protect their children from their grief, so they put on an outwardly brave front or don’t talk about the deceased family member. Instead of the desired protective effect, however, the child receives the message that demonstrating grief or talking about death is wrong, leading him or her to feel isolated, to grieve privately, or to delay grieving. The child may also conclude that the parents didn’t really care about the deceased since they have forgotten him or her so easily or demonstrate no emotion. The parents’ efforts to avoid talking about the death may cause them to isolate themselves from their children at a time when they are most needed. Children need to know that their parents love them and will continue to protect them. Children need opportunities to talk about their relative’s death and associated memories. A surviving sibling may feel guilty simply because he or she has survived, especially if the death was due to an accident that involved both children. Siblings’ grief, especially when compounded by feelings of guilt, may be manifested by regressive behavior or anger. Parents should be informed of this possibility and encouraged to discuss the possibility with their children.

Developmental Perspective

Children’s responses to death reflect the family’s current culture, their past heritage, experiences, and the sociopolitical environment. Personal experience with terminal illness and dying may also facilitate children’s comprehension of death and familiarity with mourning. Developmental differences in children’s efforts to make sense of and master the concept and reality of death do exist and profoundly influence their grief reactions.

Children younger than 3 yr of age have little or no understanding of the concept of death. Despair, separation anxiety, and detachment may occur at the withdrawal of nurturing caretakers. Young children may respond in reaction to observing distress in others, such as a parent or sibling who is crying, withdrawn, or angry. Young children also express signs and symptoms of grief in their emotional states, such as irritability or lethargy, and in severe cases, mutism. If the reaction is severe, failure to thrive may occur.

Preschool children are in the preoperational cognitive stage, in which communication takes place through play and fantasy (Chapter 6). They do not show well-established cause-and-effect reasoning. They feel that death is reversible, analogous to someone going away. In attempts to master the finality and permanence of death, preschoolers frequently ask unrelenting, repeated questions about when the person who died will be returning. This makes it difficult for parents, who may become frustrated because they don’t understand why the child keeps asking and do not like the constant reminders of the person’s death. The primary care provider has a very important role in helping families understand the child’s struggle to comprehend death. Preschool children typically express magical explanations of death events, sometimes resulting in guilt and self-blame (“He died because I wouldn’t play with him.” “She died because I was mad at her.”). Some children have these thoughts, but do not express them verbally due to embarrassment or guilt. Parents and primary care providers need to be aware of magical thinking and must reassure preschool children that their thoughts had nothing to do with the outcome. Children of this age are often frightened by prolonged, powerful expressions of grief by others. Children conceptualize events in the context of their own experiential reality, and therefore consider death in terms of sleep, separation, and injury. Young children express grief intermittently and show marked affective shifts over brief periods. Regression, accompanied by longing, sadness, and anger, may accompany grief.

Younger school-aged children think concretely, recognize that death is irreversible but feel it will not happen to them or affect them, and begin to understand biologic processes of the human body (“You’ll die if your body stops working”). Information gathered from the media, peers, and parents forms lasting impressions. Consequently, they may ask candid questions about death that adults will have difficulty addressing (“He must have been blown to pieces, huh?”).

Children 9 yr of age and older do understand that death is irreversible and that it may involve them or their families. These children tend to experience more anxiety, overt symptoms of depression, and somatic complaints than do younger children. School-aged children are often left with anger focused on the loved one, those who could not save the deceased, or those presumed responsible for the death. Contact with the pediatrician may provide great reassurance, especially for the child with somatic symptoms, and particularly when the death followed a medical illness. School and learning problems may also occur, and these reactions are often linked to difficulty concentrating or preoccupation with the death. Close collaboration with the child’s school may provide important diagnostic information and offer opportunities to mobilize intervention or support.

At 12-14 yr of age, children begin to use symbolic thinking, reason abstractly, and analyze hypothetical, or “what if,” scenarios systematically. Death and the end of life become concepts, rather than events. Teenagers are often ambivalent about dependence and independence and may withdraw emotionally from surviving family members, only to mourn in isolation. Adolescents begin to understand complex physiologic systems in relationship to death. Since they are often egocentric, they may be more concerned about the impact of the death on themselves than about the deceased or other family members. Fascination with dramatic, sensational, or romantic death sometimes occurs and may find expression in copycat behavior, such as cluster suicides, as well as competitive behavior to forge emotional links to the deceased person (“He was my best friend.”). Somatic expression of grief may revolve around highly complex syndromes (eating disorders or conversion reactions) as well as symptoms limited to the more immediate perceptions, as with younger children (stomachaches). Quality of life takes on meaning, and the teenager develops a focus on the future. Depression, resentment, mood swings, rage, and risk-taking behaviors can emerge as the adolescent seeks answers to questions of values, safety, evil, and fairness. Alternately, the adolescent may seek philosophical or spiritual explanations (“being at peace”) to ease their sense of loss. The death of a peer may be especially traumatic.

Families often struggle with how to inform their children of the death of a family member. The answer depends on the child’s developmental level. It is best to avoid misleading euphemisms and metaphor. A child who is told that the relative who died “went to sleep” may become frightened of falling asleep, resulting in sleep problems or nightmares. Children can be told that the person is “no longer living” or “no longer moving or feeling.” Using examples of pets that have died sometimes can help children gain a more realistic idea of the meaning of death. Parents who have religious beliefs may comfort their children with explanations, such as “Your sister’s soul is in heaven” or “Grandfather is now with God,” provided those beliefs are honestly held. If these are not religious beliefs that the parents share, children will sense the insincerity and experience anxiety rather than the hoped-for reassurance. Children’s books about death can provide an important source of information, and when read together, these books may help the parent to find the right words, while addressing the child’s needs.

Role of the Pediatrician in Grief

The pediatrician has an important role in assisting grieving families, because death has become an uncommon experience in our society. Whereas in earlier times, parents could turn to other family members or friends who had had a similar experience, bereaved parents are now more likely to turn to their physician, hospital staff, or medical home staff for support. The pediatric health care provider who has had a longitudinal relationship with the family will be an important source of support in the disclosure of bad news and critical decision-making, during both the dying process and the bereavement period.

The involvement of the health care provider may include being present at the time the diagnosis is disclosed, at the hospital or home at the time of death, being available to the family by phone during the bereavement period, sending a sympathy card, attending the funeral, and/or scheduling a follow-up visit. Attendance at the funeral sends a strong message that the family and their child are important, respected by the health care provider, and can also help the pediatric health care provider to grieve and reach personal closure about the death. A family meeting 1-3 mo later may be helpful since parents may not be able to formulate their questions at the time of death. This meeting allows the family time to ask questions, share concerns, and review autopsy findings (if one was performed), and allows the health care provider to determine how the parents and family are adjusting to the death.

Instead of leaving the family feeling abandoned by a health care system that they have counted on, this visit allows them to have continued support. This is even more important when the health care provider will be continuing to provide care for surviving siblings. The visit can be used to determine how the mourning process is progressing, detect evidence of marital discord, and evaluate how well surviving siblings are coping. This is also an opportunity to evaluate whether referrals to support groups or mental health providers may be of benefit. Continuing to recognize the child who has died is important. Families appreciate the receipt of a card on their child’s birthday or the anniversary of their child’s death.

The health care provider needs to be an educator about disease, death, and grief. The pediatrician can offer a safe environment for the family to talk about painful emotions, express fears, and share memories. By giving families permission to talk and modeling how to address children’s concerns, the pediatrician demystifies death. Parents often request practical help. The health care provider can offer families resources, such as literature (both fiction and nonfiction), referrals to therapeutic services, and tools to help them learn about illness, loss, and grief. In this way, the physician reinforces the sense that other people understand what they are going through and helps to normalize their distressing emotions. The pediatrician can also facilitate and demystify the grief process by sharing basic tenets of grief therapy. There is no single right or wrong way to grieve. Everyone grieves differently; mothers may grieve differently than fathers, and children mourn differently than adults. Helping family members to respect these differences and reach out to support each other is critical. Grief is not something to “get over,” but a lifelong process of adapting, readjusting, and reconnecting.

Parents may need help in knowing what constitutes normal grieving. Hearing, seeing, or feeling their child’s presence may be a normal response. Vivid memories or dreams may occur. The pediatrician can help parents to learn that, although their pain and sadness may seem intolerable, other parents have survived similar experiences, and their pain will lessen over time. The support of the pediatrician, medical home staff, support groups, or individual counselors may be needed during this time.

Pediatricians are often asked whether children should attend the funeral of a parent or sibling. These rituals allow the family to begin their mourning process. Children older than 4 yr of age should be given a choice. If the child chooses to attend, he or she should have a designated, trusted adult, who is not part of the immediate family, to stay with the child, offer comfort, and be willing to leave with the child if the experience proves to be overwhelming. If the child chooses not to attend, he or she should be offered additional opportunities to share in a ritual, go to the cemetery to view the grave, tell stories about the deceased, or obtain a keepsake object from the deceased family member as a remembrance.

In the era of regionalized tertiary care medicine, the primary care provider and medical home staff may not be informed when one of their patients dies in the hospital. Yet, this communication is critically important. Families assume their pediatrician has been notified, and often feel hurt when they don’t receive some symbol of condolence. Because of their longitudinal relationship with the family, primary care providers may offer much needed support. There are practical issues, such as the need to cancel previously made appointments and the need to alert office and nursing staff so that they are prepared should the family return for a follow-up visit or for ongoing health maintenance care with the surviving siblings. Even minor illnesses in the surviving siblings may frighten children. Parents may contribute to this anxiety since their inability to protect the child who has died may leave them with a sense of guilt or helplessness. They may seek medical attention sooner or may be hypervigilant in the care of the siblings because of guilt over the other child’s death, concern about their judgment, or the need for continued reassurance. A visit to the pediatrician can do a lot to allay their fears.

Clinicians must remain vigilant for risk factors in each family member and in the family unit as a whole. Primary care providers, who care for families over time, know bereft patients’ premorbid functioning and can identify those at current or future risk for physical and psychiatric morbidity. Providers must focus on symptoms that interfere with a patient’s normal activities and compromise a child’s attainment of developmental tasks. Symptom duration, intensity, and severity, in context with the family’s culture, can help identify complicated grief reactions in need of therapeutic attention. Descriptive words, such as “unrelenting,” “intense,” “intrusive,” or “prolonged,” should raise concern. Total absence of signs of mourning, specifically, an inability to discuss the loss or express sadness, also suggests potential problems.

No specific sign, symptom, or cluster of behaviors identifies the child or family in need of help. Further assessment is indicated if the following occur: (1) persistent somatic or psychosomatic complaints of undetermined origin (headache, stomachache, eating and sleeping disorders, conversion symptoms, symptoms related to the deceased’s condition, hypochondriasis); (2) unusual circumstances of death or loss (sudden, violent, or traumatic death; inexplicable, unbelievable, or particularly senseless death; prolonged, complicated illness; unexpected separation); (3) school or work difficulties (declining grades or school performance, social withdrawal, aggression); (4) changes in home or family functioning (multiple family stresses, lack of social support, unavailable or ineffective functioning of caretakers, multiple disruptions in routines, lack of safety); (5) concerning psychologic factors (persistent guilt or blame, desire to die or talk of suicide, severe separation distress, disturbing hallucinations, self-abuse, risk-taking behaviors, symptoms of trauma such as hyperarousal or severe flashbacks, grief from previous or multiple deaths). Children who are intellectually impaired may require additional support.

Treatment

Suggesting interventions outside the natural support network of family and friends can often prove useful to grieving families. Bereavement counseling should be readily offered if needed or requested by the family. Interventions that enhance or promote attachments and security, as well as give the family a means of expressing and understanding death, help to reduce the likelihood of future or prolonged disturbance, especially in children. Collaboration between pediatric and mental health professionals can help determine the timing and appropriateness of services.

Interventions for children and families who are struggling to cope with a loss in the community include gestures such as sending a card or offering food to the relatives of the deceased and teaching children the etiquette of behaviors and rituals around bereavement and mutual support. Performing community service or joining charitable organizations, such as fund-raising in memory of the deceased, may be useful. In the wake of a disaster, parents and older siblings can give blood or volunteer in search and recovery efforts. When a loss does not involve an actual death (e.g., parental divorce or geographic relocation), empowering the child to join or start a “divorced kids’ club” in school or planning a “new kids in town” party may help. Participating in a constructive activity helps move the family away from a sense of helplessness and hopelessness and helps them to find meaning in their loss.

Psychotherapeutic services may benefit the entire family or individual members. Many support or self-help groups focus on specific types of losses (sudden infant death syndrome, suicide, widow/widowers, or AIDS) and provide an opportunity to talk with other people who have experienced similar losses. Family, couple, sibling or individual counseling may be useful, depending on the nature of the residual coping issues. Combinations of approaches may work well for children or parents with evolving needs. A child may participate in family therapy to deal with the loss of a sibling and use individual treatment to address issues of personal ambivalence and guilt related to the death.

The question of pharmacologic intervention for grief reactions often arises. Explaining that medication does not cure grief and often does not reduce the intensity of some symptoms (separation distress) can help. Although medication can blunt reactions, the psychologic work of grieving still must occur. The pediatrician must consider the patient’s premorbid psychiatric vulnerability, current level of functioning, other available supports, and the use of additional therapeutic interventions. Medication, as a first line of defense, rarely proves useful in normal or uncomplicated grief reactions. In certain situations (severe sleep disruption, incapacitating anxiety, or intense hyperarousal), use of an anxiolytic or antidepressant medication for symptom relief and to provide the patient with the emotional energy to mourn may help. Medication used in conjunction with some form of psychotherapy, and in consultation with a psychopharmacologist, has optimal results.

Children who are refugees and may have experienced war, violence, or personal torture deserve special mention. These children, while often resilient, may experience post-traumatic stress disorder if exposures were severe or repeated. Sequelae such as depression, anxiety, and grief need to be addressed, and mental health therapy is indicated. Cognitive behavioral treatment, use of journaling and narratives to bear witness to the experiences, and use of translators may be essential.

Spiritual Issues

Responding to patients’ and families’ spiritual beliefs can help in comforting them during family tragedies. Offering to call members of pastoral care teams or their own spiritual leader can be a real support to them and aid in decision-making. Families have found it important to have their beliefs and their need for hope acknowledged in end-of-life care. The majority of patients report welcoming discussions on spirituality, which may help individual patients cope with illness, disease, dying, and death. In addressing spirituality, physicians need to follow certain guidelines, including maintaining respect for the patient’s beliefs, following the patient’s lead in exploring how spirituality affects his or her decision-making, acknowledging the limits of their own expertise and role in spirituality, and maintaining their own integrity by not saying or doing anything that violates their own spiritual or religious views. Health care providers should not impose their own religious or antireligious beliefs on patients, but rather should listen respectfully to their patients. By responding to spiritual needs, physicians may better aid their patients and families in end-of-life care and bereavement and take on the role of healers.

Self-Care of the Health Care Provider

Just as the death of a child is a very stressful experience for the family, it is also a very powerful one for health care providers. Since the death of a child is contrary to everything for which a pediatrician strives, the death of a patient can cause a grief reaction in physicians that is comparable to the death of a loved one, resulting in emotions of sadness, anger, guilt, and occasionally, relief. A medical culture in which health care providers acknowledge their own grief and mourning and select ways to address it is important. Possibilities include attending the memorial service or funeral, participating in a debriefing with colleagues within the hospital or medical home, and creating opportunities to both mourn the patient’s death and celebrate the patient’s life. Getting regular exercise, maintaining good nutrition, getting adequate sleep, meditating, spending time with family and friends, taking time for journaling and self-reflection, participating in hobbies, and taking vacations are all examples of self-care. Health care providers have demanding but rewarding jobs. They need to maintain their inner strength and resilience in order to be effective in their profession. The way that a health care professional integrates the death of a child can change this experience from a very tragic and stressful one, leading to burnout, to a rewarding and memorable experience, in which he or she functions as a true healer to a family.