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The Child and Death

2000; American Academy of Pediatrics; Volume: 21; Issue: 10 Linguagem: Inglês

10.1542/pir.21.10.350

1529-7233

Olle Jane Z. Sahler,

Intergenerational Family Dynamics and Caregiving

Three siblings, Debbie, age 13, Mark, age 7,and Heather, age 3, are brought to you by their father, John Morgan, 1 month after the death of their 35-year-old mother from ovarian cancer. Despite aggressive medical and surgical therapy that required multiple hospitalizations, Mrs. Morgan died 4 months after diagnosis.The children were told initially that their mother was “very sick from an infection.” About 2 weeks before her death, they were told that their mother had cancer and that she would be “going to heaven to be with God.”Immediately after the mother’s diagnosis, the children were sent to live with their paternal aunt in a town about 10 miles from their home. This allowed the father to continue working to maintain his medical insurance and still take care of his wife at home and at the hospital. The children were driven to and from school each day. They saw their mother every weekend during the first 2 months, but because of her altered appearance from chemotherapy and altered sensorium from brain metastases, they saw her after that only once, about 2 weeks before her death. At that time, she recognized them but was unable to converse coherently.Debbie was given the choice of attending her mother’s funeral,but because neither of her siblings was considered old enough to attend, she chose to stay with them at the home of a family friend. After the funeral, the children returned to their aunt’s home for a week while their father grieved, disposed of most of his wife’s belongings to various charities, and made arrangements for the children to be taken care of after school when they returned home.Now, 3 weeks after returning home, Debbie is sullen around the house, refuses to do extra chores, and wants to spend time with friends every afternoon after school and for entire weekends, including sleepovers. Mark is belligerent and disruptive in class, seldom does his homework, and often hits his sisters without apparent provocation. Heather, who was fully toilet-trained before her mother became ill, has started wetting her bed again and sucks her thumb frequently, a habit she had had only at bedtime. She clings to her father when he drops her off at child care each morning, will not play with the doll house at the center, and weeps herself to sleep at naptime each day. She frequently asks her father, siblings, other family, and child care personnel when her mother is coming home from the hospital. When reminded that her mother is “in heaven,” Heather asks when she can go to heaven, too.The case presented provides an opportunity to examine several strategies that families commonly use to help children cope with the fatal illness and death of a parent. Because losing a parent during childhood is relatively rare, the typical family usually has not dealt with the issue. Therefore, they base their judgments and decisions on(often conflicting) advice from relatives or friends, what they think makes the most common sense, and what they believe they would have wanted at a similar age under similar circumstances. They also usually act from a desire to “protect” their children from the pain and suffering that they, themselves, are experiencing. In addition,although they seldom recognize it as such, they are motivated by the understandable desire to protect themselves from additional grief and worry. Thus, putting children into a “safe” environment where they can be shielded from the uncertainty, anxiety, and anticipatory grieving of the rest of the family frequently seems the most compassionate and logical strategy to promote the children’s “best interests.”Indeed, until about 30 years ago, the Morgan family story was the norm. Families relying on the advice of grandparents or others of their generation about the best way to handle a child’s involvement in the care of a relative who has a fatal illness are most likely told to restrict the child’s access to the dying person. This shielding is perceived as an act of kindness that relieves the child from having to experience the sights, sounds, and smells of the sickbed. Most likely,this concept stems from the grandparent’s own experiences as a child when most sick and debilitated people were cared for at home and the chores and responsibilities associated with caring for the dying are remembered as frightening and onerous.However, research has shown repeatedly that both dying children and those who are related to a dying person are clearly aware that serious illness is present and causing distress and anxiety in those from whom they traditionally receive comfort and reassurance.(1)(2)(3)(4)(5)(6)(7)Children who are being shielded by being excluded from discussions and visits are not afforded the opportunity to receive explanations or to participate in end-of-life caregiving activities. As a result, they become isolated behind a wall of silence and are left to imagine what may be happening. Often, fantasy is significantly worse than reality,especially when children become frightened for their own future or worry about being abandoned or hurt. Typically, unless a child expresses anger or anxiety by acting out, parents underestimate or are not aware of the emotional and psychological turmoil their children are experiencing.(8)Informing children has been advocated for several decades in the belief that people are better able to cope with the known than with the unknown. In addition, such sharing is believed to enable the child to cope with otherwise hidden fears and concerns, help the child correct distorted notions, and support the child in preparing realistically for a new role in a different family constellation.(9)(10)(11) In fact, research has shown that children who are told about an impending death, who are encouraged to express their feelings about their coming loss, and who are included in caregiving tasks cope more successfully than children who do not have either that knowledge or opportunity.(12) Thus, the physical and emotional distancing that once was thought to be an act of kindness now is known to be more likely an error of kindness.Pediatricians can offer substantive assistance to grieving families who are overwhelmed by a fatal illness and confused about how they can respond most effectively to the needs of the children in the family.(13)(14)(15)(16) A key principle that should guide the pediatrician’s efforts is that each family must find their own best balance between excluding children entirely and demanding too much of them. In other words, there is no absolutely right way to help a child grieve, although some approaches are more likely than others to enhance coping. The approaches that are best for a particular family depend on the family’s social or cultural beliefs and usual style of solving problems. One of the least helpful roles that a pediatrician, who is seen as an important authority figure, can play is to undermine the way in which the family usually makes decisions by expressing the opinion that the family is making significant mistakes. Instead, especially when religious or other closely held cultural traditions are interfering with good care, the pediatrician will be most helpful by assisting the family in finding reasonable and acceptable compromises or alternatives.A second key principle is that the time and energy spent to inform and incorporate the children into the grieving process will result in significantly less distress, anxiety, and acting out or withdrawn behavior over time. Thus, the pediatrician also can be an advocate by acknowledging to the family that helping children deal with terminal illness and death is not easy, intuitive, or trivial; that it is good for them to seek others’ opinions; and that their concerns will not be dismissed summarily with “I’m sure you’ll do the right thing.”Usually, families are physically and emotionally exhausted, and attending to their well children may seem not only impossible but also a betrayal of the importance of the person who is dying or has just died. Their belief often is that this is so momentous an event that all energy and concentration should be focused entirely in that direction. In another vein, some families do not permit mention of a potential death in the belief that talking about something disastrous will cause it to happen. Although this tradition often is associated with less educated communities, such hesitancy to discuss a bad outcome in advance is virtually universal. Such strongly held beliefs can make it difficult for some parents to understand that planning ways to make their children feel useful in providing end-of-life care and participating in rituals such as funerals actually can be a source of satisfaction in an otherwise dismal and hopeless situation. Occasionally, such discussions can be held only outside the family,making the pediatrician an essential sounding board.In reviewing the Morgan family’s response to the mother’s rapidly fatal illness at a young age, numerous questions arise(TableT1). Some of these questions will be addressed early in the illness, but the family should be encouraged to be flexible enough to reconsider their initial answers as the situation changes.Maintaining a child’s regular routine usually is considered best,primarily because it relieves the child from facing yet another adaptive challenge. The reality of the situation, as in the Morgan case, may not permit such stability. The need to maintain medical insurance coverage is a prime factor in determining which individuals,and under what circumstances, will leave employment to care for a sick family member. Although the Family Leave Act, which came into effect in the mid-1990s, theoretically makes it possible for any parent or spouse to take a leave of absence, in fact, not all employers can or will abide by its provisions, especially in small companies. An added burden is that although the time off might be available, the time typically is unpaid. For families whose incomes are borderline and who must pay for hospital parking, hospital meals, and numerous unreimbursable costs for medications and supplies, not working is not an option.Even though children may be sent to live elsewhere, keeping that arrangement as stable as possible is in their best interests. Attending school provides access to friends and teachers. Notifying the school that a family member is very sick helps teachers put unexplained absences, incomplete homework, physical or emotional burnout, or uncharacteristic behavior into context. Many children do not want other students to know of the illness because they do not want to feel different or singled out. Thus, when teachers are informed, it is critical to remind them that this information is confidential unless the child wishes to have it shared with peers.Knowing the reality is virtually always better than not knowing. Visiting, however, entails carefully preparing the child for the sights, sounds, and smells of the sickbed. In the hospital, nursing staff are invaluable resources. They have had substantial experience helping family visitors of all ages and relationships see their loved one for the first time in an intensive care setting or receiving toxic therapies. Child life specialists frequently are available on pediatric units and sometimes consult to adult units that are anticipating a visit by a child. Subsequent visits by children usually are characterized more by curiosity than fear. Younger children,especially, are likely to have many questions. Older children and adolescents may be embarrassed to ask, making it helpful to provide explanations without being questioned.“Is X going to die?” is one of the questions that adults are most fearful a child will pose. One way to answer it is to ask in return,“Why do you ask?” or “You’ve been thinking about that. What have you been thinking?”“I don’t know. I was just wondering. She looks so bad and can’t even talk to me.”“I know you’d like your mom to get a lot better right now and just come home.”“Yeah.”“A lot of people are working to make her better. She’s trying very hard, too. I don’t know if it can happen, but we can hope it will.”“I would feel so bad if she died.”“I know. Me, too. Let’s go hold her hand so she can feel we’re pulling for her.”In this exchange, the possibility that the outcome might be death is acknowledged, but the child also is made aware that his or her feelings of sadness are shared, and he or she is given a part to play by being offered the opportunity to touch and to comfort.One of the most common questions families ask is whether the children should attend the funeral. In the case presented, the family had made the assumption that a 13-year-old is old enough to attend, but 3- and 7-year-olds are not. Some families bring infants to the service;others discourage even young adults from attending. Often the decision about age changes, depending on whether the casket is open. Regardless of age, each child who does attend a funeral should have some familiar supportive person available to answer questions, hug, and do something else with. Children have a short attention span, and because many do not understand that death is final, they do not feel the intense sorrow and loneliness that adult mourners feel. Allowing them to participate without interfering with the necessary grieving of others means that they should be given the chance to be present or to be away doing more age-appropriate things when they become restless or tired.If a child is given an option, it should be real and the child’s decision fully accepted without recrimination. Reference to the event in the future should focus on how hard it can be to make decisions like this, how there is no right way, and how the child decided based on what he or she thought was the best thing to do at the time. In the case presented, the older daughter seemed to feel that being with her siblings was the better place for her to be at that confusing and sad time. If, in later life, she expresses disappointment in herself for not having attended the funeral, it would be important to point out how helpful it was to the other children to have her with them. Given that there is no “right” or “wrong” way to grieve, she made as good a decision as she could at the time.The father’s choice to begin to dispose of his wife’s belongings immediately after her death is one way to handle the pain of constant reminders of a loss. At the other end of the time spectrum, an entire room may be “preserved” as it was at the time of the person’s death for months or years. Typically, some time passes before families have the emotional energy to sort and give away items. Much depends on whether there is a need for the space (eg, a room of his or her own for a sibling).Including children in the sorting and decision making can be healing. It allows them to decide on items that they each want to keep personally because of special significance and to identify “public”objects (eg, pictures, photo albums, handicrafts) that they would like to keep in common areas or on display. Sorting provides the opportunity to remember, to use the deceased person’s name, to recall happy times and laugh, and to remember disappointments. All relationships among close family members are ambivalent. Acknowledging that the relationship each person had with the deceased had ups and downs helps to keep memories in perspective.The children in the case are displaying some of the wide spectrum of behaviors associated with grieving. Debbie, the 13-year-old, is seeking the companionship of peers for several reasons. This is the time of life when friends are most important no matter who in your family has died. No young teenager wants to be different by virtue of being in mourning, and no young teenager wants to assume household responsibilities, even in the short term. Mark, the 7-year-old, is acting out. Boys are more likely than girls to externalize their anger,fear, and anxiety. In addition, negative behavior can attract attention, and for many children, even punitive attention is better than no attention at all. He has few, if any, friends to whom he can turn as easily as his teenage sister, and people are less likely to tolerate cuddly regressive behavior from him than they are from his preschool-age sister. Thus, acting out may seem his best alternative. Heather, the 3-year-old, has regressed. Her bedwetting and thumb sucking may persist for weeks or months. Conversations about growing up similar to those she probably had with her mother just before the mother became ill will have to be repeated. Her inquiries about her mother returning are typical of preoperational children, who have no sense of the irreversibility and finality of death. Thus, wishing to visit her mother who, in the child’s mind, is visiting someone in a physical place away from home, is wholly expected. Such yearnings sometimes are reported by older children and other family members. In fact, in the early stages of grief, they also are common. Concern is appropriate if the yearning becomes persistent or preoccupying or leads to some action (eg, suicide gesture).Family members grieve differently and at different rates; some do not accept the finality of the death until weeks or months after the event. Distinguishing normal grieving from pathologic grieving can be difficult. However, a particularly good rule of thumb is that grief that is resolving, no matter how slowly, probably is not pathologic. Nonetheless, many people, including children, can benefit from self-help or professionally led support groups or even a few visits to a bereavement counselor. The usual question is, “Am I doing all right?” or “Is my son/daughter doing all right?” What the individual really is asking is, “I feel like I’m going crazy missing X. I hear her voice or see her in crowds. I wish she were here to help me with all the things I need to do. I miss her so much. Will it ever get better?”In the Morgan case, suggesting that the family, or just the father alone if he wishes, return in 2 weeks gives the family additional time to adjust, shows that the pediatrician is not abandoning them, and acknowledges that what they have been through is a major loss to which the clinician will pay attention and give time and thought. It is likely that having shared their situation with the pediatrician and received some information about what to expect over time will result in some grief resolution, even from this brief intervention. Providing the names of some local support groups to contact if they wish is reasonable even at the first visit. Such support groups are designed to prevent pathologic grieving by bringing together people who are having similar experiences so that families can learn that their feelings and worries are, in fact, common. Grief reactions that continue to interfere with adequate functioning more than 3 months after the death may require referral to a bereavement specialist for reassurance or advice about alternative coping strategies.