David J. Schonfeld
Virtually all children experience the death of a family member or friend.1 Approximately 1 of every 20 children experiences the death of a parent by 16 years of age. Although a normative and universal experience, bereavement can cause significant adjustment difficulties for children and adolescents, at least temporarily impact their ability to learn, and result in feelings and behaviors that may concern parents and other adults as well as the children themselves. Pediatricians and other pediatric health care providers can play a vital role by building on their preexisting relationship with the child and family to ensure that the child understands accurately what has occurred, provide advice to families on how to help promote adjustment and coping, identify misconceptions and reactions (eg, unwarranted fears, guilt, somatization, depression) that would benefit from clarification or additional services, and assist the child and family in identifying supportive resources within the community.
Children and adolescents who are actively grieving may be reluctant to disclose their feelings and concerns with parents and other adults and give the false impression that they are disinterested, unaffected, or fully adjusted to the loss. Some young children may not understand what has occurred or the implications of the death, while other children and adolescents may sense accurately that the topic is uncomfortable for adults, worry that their reactions are somehow abnormal, and/or be reluctant to burden further their parents who appear already overwhelmed with their own grief. Indeed, the egocentrism of children may lead them to conclude that they are personally hurting their parents if they initiate a conversation that seems to prompt signs of distress, such as crying in their parents (ie, that they are upsetting their parents by talking about the death rather than simply prompting their parents’ expression of the distress caused by the death; in a similar manner, many health care providers are reluctant to initiate conversations with children out of concern that such discussions may upset them). For this reason, it is helpful to offer to speak with children and adolescents alone so that they can talk freely and share their reactions without concern about upsetting their parents. Parents, in turn, who are grieving themselves, may wish to believe that their children are spared the pain they are experiencing and/or be less attentive to their children’s reactions and needs. Since children have difficulty sustaining strong emotions for extended periods of time, they may conduct the work of mourning in “spurts,” employ denial or other means to delay or limit their engagement in the process, or use play or behavior to communicate and process their feelings. Therefore, for many reasons, adults, including pediatric health care providers and parents, may underestimate the impact of a death on children and adolescents and miss important opportunities to offer support and assistance.
Pediatricians can begin by creating an environment where children and adolescents feel it is safe and welcome to discuss their thoughts and feelings related to the death. Physicians often worry, though, that they do not know what to say that will be helpful and do not wish to make matters worse by raising the topic. Approaches to initiate discussion by adults that may be less helpful include (1) trying to “cheer up” those who are actively grieving (eg, “I’m sure you will feel better soon” or “At least your father is no longer in pain”); (2) encouraging people to be strong or to hide or minimize their expressions of distress (eg, “You don’t want to have your son see you cry” or “You are the man of the house now that your father has died”); and (3) telling people how they should or do feel rather than asking them about their own feelings (eg, “You must be angry” is often not helpful, whereas stating “I have the sense you may be angry—is that the case?” or “I wonder if you are angry” is more likely to be well received). Much can be accomplished by a genuine and empathic statement of concern (eg, “I’m sorry to hear that your brother died”), a willingness to be with the individual who is actively grieving without trying to change his or her feelings immediately, active listening, and an offer to provide assistance now and in the future.
MISCONCEPTIONS, LITERAL MISINTERPRETATIONS, AND GUILT
Adjustment requires that the children first understand what has occurred and its implications. There are four basic concepts about death that children must come to understand: (1) death is irreversible—very young children may equate death with separation and await the deceased’s return; (2) all life functions end completely at the time of death (termed nonfunctionality or finality)—if this is not understood, children may worry about the physical suffering of the deceased; (3) all living things eventually die—if children do not understand the inevitability of death, they may question what the deceased individual or the child himself or herself did that was responsible for this person being selected to die; and (4) a realistic understanding of the cause of death, which helps to minimize the attribution of the cause to unrelated thoughts or actions of the victim or the child.2,3 While most children, on average, come to learn these concepts by the age of 5 to 7 years, personal experience and educational interventions can accelerate comprehension.4 For this reason, children with a terminal condition generally have a precocious understanding of these concepts and an appreciation of their own mortality.5,6
Young children’s limited conceptual understanding, coupled with a tendency for adults to withhold relevant information, often results in misconceptions and misunderstandings. The magical thinking and egocentrism of children prompt them to assume guilt related to the death for some thought, action, or failure to act. Often, this guilt is illogical (eg, “My father had a heart attack because I upset him that morning” or “If only I had stayed home from school that day, I would have been able to get help for my mother earlier”) and too often remain fully unknown to others but may cause a great deal of distress for children; similar guilt feelings are common among adolescents and adults as well.
While religious explanations can be shared with children at any age, they are generally rather abstract and prone to literal misinterpretations and, especially for young children, should be accompanied by explanations about the physical realities of death (eg, “When people die, their body is no longer working; the person doesn’t move, breathe, see, or feel pain”). Simply stating that the person “went to heaven” or “was chosen by God to be at His side” may lead to questions about how to get to or from heaven or worries that others close to the child (or the child himself or herself) may be chosen next.
RISK FACTORS FOR DIFFICULTY ADJUSTING
Rando7 outlines a number of factors associated with complicated mourning that relate to the nature of the death or factors associated to relationships and support. Risk factors include deaths that are sudden or unexpected, especially when they are random, violent, mutilating or traumatic; deaths that occur after a very lengthy illness; deaths that the bereaved individual perceives could have been prevented; a relationship with the deceased characterized by ambivalence, dependency, or anger prior to the death; lack of sufficient social support after the death; or prior or concurrent losses, stressors, or mental health problems to which the bereaved is still trying to adjust.
When the death of a family member is due to a long-standing illness, children may experience graduated feelings of loss as the illness progresses. Such anticipatory grieving allows children to “practice” grieving at a time when they can comfort themselves by the realization that their family member is still alive whenever the feelings become overwhelming. Problems may arise when one family member’s course of grieving is not in synchrony with that of others, such as when one individual becomes resigned to the acceptance of the death and communicates or visits less and is perceived by other family members as abandoning the individual who is critically ill. Anticipatory grieving is a painful process, and children (and adults) may find themselves hoping for the dying process to end and experience excessive guilt for wishing for the death of a seriously ill family member.
The death of a family member is often compounded by subsequent losses, such as the decreased availability of surviving family members secondary to the need for the surviving parent to begin or increase the hours of working outside of the home, the surviving parent dating or otherwise establishing a new relationship with another adult outside the home, or parental depression that may lead the surviving parent(s) to withdraw from interactions with the child. Financial pressures, relocations prompted from a need or desire to move to a new home, and similar stressors add to the challenge already presented by the task of bereavement.
Especially when the death is sudden or unexpected, parents must make decisions quickly under very stressful conditions about whether or not to include the children in funerals and other memorial activities. Children who have been excluded from such events do not have the opportunity to benefit equally from the support of family members and friends, may have more difficulty understanding or accepting what has occurred, and often wonder what could be done to their family member or friend that is so horrifying that they are not permitted to view. In general, it is helpful instead to explain to the child in clear and direct terms what is expected to occur at the funeral and to invite the child to participate to the level of his or her comfort, without any attempt to force or coerce participation. In addition, an adult who is not personally grieving but is well known to the child (eg, a sitter, daycare provider, or neighbor) can accompany the child and attend to his or her needs and reactions, allowing the child to titrate the level of involvement. Even if children stand in the lobby of a funeral home and hand out mass cards to arriving guests, without stepping into the viewing room, they may benefit from feeling that they contributed to honoring the deceased family member and from sharing the support of relatives and family friends.
ENSURING FOLLOW-UP AND OFFERING RESOURCES
Pediatricians and other pediatric health care providers play an important role in helping adults identify and attend to their children’s needs around the time of the death and during the period of readjustment, which often lasts months to years (the duration depending in large part on the closeness of the child’s relationship to the deceased and whether or not risk factors for complicated mourning are present). Referral for additional support or counseling should be considered, especially when the death involves a close family member (eg, sibling or parent) or close friend (especially for older children and adolescents), when risk factors for complicated mourning are anticipated (eg, death from suicide, parents’ inability to talk to the child about the death, when child or parent is experiencing guilt associated with the death), when the initial reactions seem intense (eg, child appears markedly depressed or suicidal) or unusual (eg, failure to show any distress after the death of a parent), or intensive grieving is prolonged and associated with impairments in daily function (eg, sleep or eating problems or deterioration in school performance). Children who are grieving should be expected to have at least some transient difficulties with school work secondary to problems with attention, sleeping, and sadness; parents should be encouraged to contact the school to help arrange for support services prior to academic failure, which can otherwise become an additional stressor for the grieving child. Pediatricians and other pediatric health care providers should be aware of local bereavement support groups8 and counseling services for children and families and offer these resources, and they should schedule periodic follow-up appointments in order to answer questions and monitor adjustment rather than simply inviting the family to call as needed. Contact can be made around the time of anniversaries of the death or birthday of the deceased or around the time of special occasions and holidays, which may be particularly stressful. Adjusting to a significant loss is a lifelong process; children will reprocess the experience at each new stage in their life, applying new cognitive and emotional insights to try and reach a more satisfying explanation or justification for the death. Parents should be prepared that new developmental stages or significant milestones (eg, graduation, marriage, birth of first child) may stimulate new questions and renewed feelings about the death. Siblings of children who have died too often are overlooked and may require active outreach.9 It is particularly challenging for pediatricians to know what role they can play in supporting families when the individual who has died is the family’s only child. Ongoing communication and offers to meet for follow-up can be very helpful to the family in this setting. Adults often underestimate the significant impact on children of the death of a peer. Pediatricians can also play an important role in not only providing consultation to schools related to the needs of their patients but also in advising on how to provide support to others in the school community.10,11
IMPACT ON THE HEALTH CARE PROVIDER
Being with a child who is actively grieving is uncomfortable for many health care providers who have devoted their careers to decreasing the suffering of children. The death of a child patient is a particularly stressful personal and professional experience faced by pediatric health care providers. Health care providers should reflect on their personal feelings about death in order to be more available to provide support to children and families and in order to ensure adequate help for themselves.