Adolescent Grief

PERSPECTIVES ON CARE AT THE CLOSE OF LIFE

CLINICIAN’S CORNER

Adolescent Grief “It Never Really Hit Me . . . Until It Actually Happened” Grace H. Christ, DSW Karolynn Siegel, PhD Adolph E. Christ, MD, DrMSc ROBERT’S STORY Robert S is a bright, engaging, forthright 14-year-old. His brother is 8 years younger. His parents were long married, and they had a close circle of friends and family in their home and school communities. Robert is healthy, a good student, and athletic, competing in a variety of sports at school. In 1995, when Robert was 7, his mother was diagnosed with breast cancer metastatic to the liver. Mrs S initially underwent a bilateral mastectomy followed by a regimen of chemotherapy. She was disease-free for 2 years. At recurrence, she had an oophorectomy and received 2 chemoembolizations to the liver for new hepatic lesions, followed with cycles of chemotherapy. In November 1998, skull metastases were discovered. A few months later she was treated for congestive heart failure, but continued chemotherapy. By 1999, Mrs S was both exhausted from the treatments and frustrated by their limited effectiveness. She explained her goal to her physician: “All I want you to do is keep me alive to see my son’s bar mitzvah. Nothing else matters.” The event was a month off. During that period, she declined quickly. Yet, she reached her goal. Mrs S made numerous preparations for her death, including writing her life’s story for her sons, creating a “roadmap” of advice, and collecting mementos to be given to them as they reach life’s important milestones. Robert had been confronted with death even before the loss of his mother. Several years before his mother’s diagnosis, when Robert was 5, a newborn sister died, just after birth. In addition, during the course of Mrs S’s illness, Robert’s paternal grandmother died of colon cancer. Mrs S’s illness was so protracted that Robert said he had become “immune” to her remissions and relapses. Almost immediately after the bar mitzvah further brain metastases were discovered. Radiation was ineffective and hospice care was initiated. She died peacefully at home, several weeks later. Although he was kept unusually well informed about his mother’s condition throughout the course of her illness, he was nonetheless surprised when she actually died. Following the death, after a couple of weeks of numbness, Robert reported feeling depressed. He felt that a piece ©2002 American Medical Association. All rights reserved.

In the United States, more than 2 million children and adolescents (3.4%) younger than 18 years have experienced the death of a parent. When death can be anticipated, as with a terminal illness, and even when the death is sudden, as in the September 11, 2001, attacks on the World Trade Center and Pentagon, physicians and other health care professionals have an opportunity to ameliorate the impact of the loss. Developmental factors shape adolescents’ reactions and responses to the death of a parent. Recent research in childhood and adolescent bereavement shows how health professionals can support the adolescent’s coping strategies and prepare the family to facilitate an adolescent’s mastery of adaptive tasks posed by the terminal phase of the parent’s illness, the death, and its aftermath. Robert, a bereaved 14-yearold, illustrates some of these adaptive challenges. JAMA. 2002;288:1269-1278

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of himself was missing. Talking with a guidance counselor at school was helpful. The depressed feelings disappeared quickly, but they were replaced by loneliness, which has persisted. Robert has coped with his loneliness by writing poetry and was able to eloquently express his feelings about the loss of his mother at the time of the interview, which took place in November 2000, a year after her death. PERSPECTIVES ROBERT: I think I’m definitely trying to keep my mom in the front of my mind. I mean for anybody that’s not around it’s very easy to forget that person and the significance and the impact that they’ve had on your life. It would be very difficult if I were to lose the memories because there’s no way to get those back. Author Affiliations: School of Social Work (Dr G. Christ) and Mailman School of Public Health (Dr Siegel), Columbia University, New York, NY; and Child/ Adolescent Psychiatry, State University of New York Health Science Center & Kings County Hospital, Brooklyn (Dr A. Christ). Corresponding Author and Reprints: Grace H. Christ, DSW, Columbia University School of Social Work, 622 W 113th St, New York, NY 10025 (e-mail: ghc1 @columbia.edu). Perspectives on Care at the Close of Life is produced and edited at the University of California, San Francisco, by Stephen J. McPhee, MD, Michael W. Rabow, MD, and Steven Z. Pantilat, MD; Amy J. Markowitz, JD, is managing editor. Perspectives on Care at the Close of Life Section Editor: Margaret A. Winker, MD, Deputy Editor, JAMA. (Reprinted) JAMA, September 11, 2002—Vol 288, No. 10

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Box 1. Recommendations for Professionals Who See Adolescents During a Parent’s Terminal Illness and After the Death* Terminal Illness Provide the adolescent with information in a factual and age-appropriate manner. Facilitate discussions about the adolescent’s feelings and concerns with parents, teachers, and other adults. Help parents to encourage the adolescent’s anticipatory grief. Help parents to understand the adolescent’s emotional volatility and developmentally related reactions. Advise parents to facilitate the adolescent’s maintenance of his or her support network. Advise parents to limit the number of caregiving and household tasks assigned to the adolescent. Encourage hospital visits, but understand the adolescent’s ambivalence until death is imminent. Death and Family Rituals Encourage parents to reduce levels of family conflict, which can intensify as the parent’s condition deteriorates. Advise parents to inform the adolescent when the death is imminent and encourage the adolescent to have a final good-bye visit. Encourage surviving parent to support the adolescent’s desire to return to school soon after the death. Remind surviving parent to allow the adolescent to select mementos and clothing belonging to the dead parent. Advise surviving parent to encourage the adolescent to express grief in eulogies, writing, or by participating in rituals and memorials, or visiting the grave site. Bereavement and Reconstitution Help surviving parent to recognize the adolescent’s expressions of grief in behaviors as well as emotions. Help parents to educate adolescent about the grief process. Advise parent to continue to provide opportunities for grieving as well as for pleasurable remembrance of the parent with those who knew him or her. Help parent to set limits to prevent destructive behavior and to support the adolescent’s continued growth and independence. Encourage parent to create enjoyable experiences with the family. Help parent to support the adolescent’s participation in altruistic activities to combat feelings of helplessness. Advise parent to draw on the support provided by the adolescent’s peer group and on services provided by schools, religious organizations, counselors, and agencies to facilitate the adolescent’s grief process. Discuss with parent a referral for professional counseling or therapy if the adolescent exhibits uncommon, enduring, or severe symptoms of depression or destructive behaviors. Encourage parent to seek counseling if he or she is experiencing prolonged or severe problems with mediating family conflicts or managing his or her own grief. *These recommendations are drawn from a study of families in which a parent died of cancer11 as well as from the work of other investigators.4,5,12,13

My recovery from the time that she died was all quite fast. This year’s gone by and it’s all a very distant memory. The fear of forgetting a deceased loved one, particularly a parent, is not an uncommon bereavement concern that must be managed. Promoting the notion of continuing bonds with the deceased—as described below—and assisting adolescents with accessing positive memories are important aspects of aftercare. In the United States, more than 2 million children and adolescents (3.4%) younger than 18 years have experienced the death of a parent.1 Adolescents may react to this life-altering event with intense sadness and depressed feelings.2-6 Many parents strive to limit the adverse impact of the loss on their children’s future development and frequently request guidance from physicians about how best to communicate with their children during the parent’s terminal illness. Children and adolescents report that they value open communication with both parents about the illness and 1270 JAMA, September 11, 2002—Vol 288, No. 10 (Reprinted)

death, and research suggests that it helps them during their bereavement.7,8 When death is anticipated, as in Robert’s experience, physicians can help prepare parents by providing specific, concrete information and practical advice to facilitate coping and meeting children’s needs at this momentous time.9,10 These recommendations and others suggested are drawn from a study of 88 families in which a parent died of cancer,11 as well as from the work of other investigators in the field (BOX 1).4,5,12,13 These recommendations are directed to physicians who are treating life-threatening illnesses in patients who are also parents; pediatricians and psychiatrists who may treat children with physical or psychological symptoms of distress; emergency department physicians; and physicians in palliative care programs and in hospices. Many physicians will not have direct contact with family members other than their adult patients and their spouses. However, an awareness that the patient is distressed when the ©2002 American Medical Association. All rights reserved.


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family is adversely impacted and that the patient wants the health care team to assist with their family’s needs is integrated into the care plan in competent end-of-life care. Finally, the physician’s support and appropriate use of direct services to families provided by other members of the medical team promotes effective family-centered care.14 Such preparation is not possible when death is unanticipated, as in the September 11, 2001, attacks. Violent death may cause more frequent traumatic stress responses with intense fears of personal safety, intrusive frightening images, feelings of guilt, and beliefs that the death could have been prevented or must be avenged. Usually such responses are transient, but in some they remain, leading to more severe psychopathology such as posttraumatic stress disorder (PTSD) and a heightened risk for complicated bereavement conditions.15-18 Access to bereavement services that focus on both traumatic stress symptoms and grief processes should be offered to families that experience such losses, especially when traumatic stress symptoms are present. Complicated bereavement in children that includes these symptoms increases children’s risk for subsequent development of other psychiatric conditions that may extend into adulthood.19 BACKGROUND Developmental Features of Childhood and Adolescence

Although this article focuses on Robert, an early adolescent, we provide some signposts and recommendations for facilitating children’s adjustment to parental loss across the developmental spectrum, following the course of the parent’s illness from diagnosis and treatment, through the terminal phase to death, and finally, describing the child’s reconstitution in death’s aftermath. There is great variability in children’s grief reactions. Children’s and adolescents’ reactions to a parent’s terminal illness and death are strongly shaped by their developmental capacities.6,20-22 Clinicians need to appreciate the manner in which demands of adaptation posed by the illness and death intersect with the child’s developmental tasks to provide effective services. BOX 2 provides developmental stages throughout childhood. Early Adolescents, 12 to 14 Years. Often the parent’s illness creates the need for greater assistance in the home that clashes with the adolescent’s developmental tasks, which include: withdrawing emotionally from parents, achieving emotional independence, and being accepted by peers. Early adolescents are characterized by ambivalent expressions of dependence and independence and sometimes by angry and perplexing expressions of selfish egocentrism.26,28 Their consistently inconsistent behavior and fear of public display of emotion typically become exaggerated under the stress of a parent’s illness. In the midst of the terminal stages of an illness, parents may regard the adolescent’s anger and developmentally driven moves toward emotional withdrawal and independence as uncaring and selfish under the circumstances, sometimes leading to spiraling family conflicts.26,28 ©2002 American Medical Association. All rights reserved.

Middle Adolescents, 15 to 17 Years. Middle adolescents are more constrained in their behavior, more understanding of situational demands, and, although they remain resentful, often exhibit more empathy concerning their parents’ needs than early adolescents. Developmental tasks include beginning to establish intimate relationships outside the family, moving toward greater separation from family, and, for girls especially, continuing to alter the relationship with their parents.26,27,29 Although more independent and helpful to the family than early adolescents, they continue the struggle to balance their own desires and needs with those of the family. While drawing support from new intimate relationships with peers and other adults, they may be devastated if close friends misunderstand their grief or even reject them because of their loss.30 In addition, their advanced cognitive abilities, which permit greater preparation for the death than with younger children, have been observed to lead to intense and sustained grief that more closely approximates the grief of adults because of their increased comprehension of the enduring consequences of the loss.11 Acknowledging these developmental and situational tensions with parents, physicians can work with other team members to • help parents understand how normal developmental strivings may make it hard for the adolescent to respond to the situation in the way the parents would like; • provide access to education, information, and discussions with physicians and other staff about the parent’s illness; • encourage families to reduce high levels of family conflict or obtain professional services; • acknowledge the intensity of adolescents’ grief and their need for education about the grief process, including ways to express and manage their responses; • encourage parents to communicate with schools to facilitate support of the adolescent in that setting; • ensure access to service agencies whose staff are knowledgeable about ways to educate and support adolescents through the grief process. Failing to appreciate the differences between adult and adolescent grief is a common source of misunderstanding between adolescents, parents, and professionals. For example, an adult’s grief for a spouse is generally characterized by a sustained period of intense sadness, anger, and anhedonia.8 Children and adolescents experience such feelings for briefer episodes than adults, interspersed with rapid return to normal activities.4,11 However, these feelings may recur throughout their development, with a broad range of emotions and behaviors. Such asynchronous expressions of grief can cause adults to mistakenly view the adolescent as not grieving at all, so they may fail to adequately support an adolescent’s less clear expression of grief. Adolescents may view a parent’s sustained grief as evidence of great vulnerability rather than its being a part of the healing process. This misunderstanding (Reprinted) JAMA, September 11, 2002—Vol 288, No. 10


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Box 2. Developmental Stages and Concerns of Young Children vs Adolescents When a Parent Is Seriously Ill or Dies* Young Children 3 to 5 Years “When is my Daddy coming home?” Development: Early preoperational thinking: ie, magical thinking. Communicates through play and fantasy. Greatest source of distress is separation from the primary caregiver but does accept a competent substitute. Normal Bereavement: Does not understand the permanence of death or causal relationships, therefore asks repeatedly when parent is returning for weeks or months after death. Is frightened by prolonged, powerful expressions of grief by adults. Wants a “whole family” like other children in preschool. Demands a replacement: “Next time, get two daddies in case you lose one again.” Complicated Bereavement: Severe and persistent separation anxiety from the surviving parent more than 6 months after the death if a predictable home life has been established. Continuing or worsening regressive behavior (eg, loss of toilet training) beyond 6 months after the death. 6 to 8 Years “I think I killed her.” Development: Late preoperational thinking. Can understand parent will not return and death is universal (it could happen to me). However, easily misunderstands cause and effect. Fears that aggressive thoughts, words, or wishes can be harmful. Parents are primary source of self-esteem. Fears rejection by peers. Normal Bereavement: Erroneously assumes self-blame and guilt for parent’s illness and death. Mourning includes joyful reminiscences; likes stories about and pictures of the dead parent.

Parent is mourned as protector, caregiver, provider of good things, and admired hero or heroine, located in a place (generally heaven) and with a function: “I think Mom is the tooth fairy.” Complicated Bereavement: Persistent or worsening school refusal, other phobias, physical symptoms with no organic etiology, and/or nondiminished grief 3 months after the death. Persistent talk of killing self to be with parent who died. Regressive behavior with loss of emotional and behavioral control. 9 to 11 Years “Just give me the facts!” Development: Concrete operational thinking improves logic and understanding of cause and effect. Cannot draw inferences from insufficient information; needs detailed explanations about illness and course of treatment. Able to use compartmentalization and distraction and avoids strong emotions. Friends are people to do things with. Accepts parental authority and wants to be helpful. Normal Bereavement: Needs to balance avoidance of sadness with planned rituals for reminiscing. Increasing expression of anger. Parent is mourned as mentor, coach, buddy, friend, cheerleader, advocate. Not uncommonly feels a sense of the parent’s presence. Complicated Bereavement: Shunning of peer involvement. Persistence of or newly reduced academic or after school activity and competence. Increasing moodiness, anger, or misbehavior 3 to 6 months after the death. (continued)

guidance for communicating with adolescents across the trajectory of illness, from diagnosis and treatment through the preparation for death.

can adversely affect communication. Teachers may become intolerant of an adolescent’s transient decline in school and athletic performance or of increases in acting out, rather than recognizing these behaviors as grief related and providing understanding and appropriate limit setting.

Living Through the Illness/Preparing for the Death

TRAJECTORY OF GRIEF When a death can be anticipated, adults commonly report experiencing grief-like reactions prior to the actual death of a spouse or a child, called anticipatory grief.31-33 Although some adolescents also describe anticipatory sadness, in a Memorial Sloan-Kettering Cancer Center study these experiences were less frequent and more muted than those of adults.11 However, it is not uncommon for adolescents to become upset at the time of the parent’s initial diagnosis, especially if the prognosis is poor. Physicians may ease adolescents’ adaptations from the time of diagnosis by encouraging parents to provide open and hopeful, but realistic communication that assures them that they can trust the parent and the physician to prepare them for major changes in functioning or prognosis. The TABLE provides

ROBERT: I think I had a pretty complete understanding. [It was important for] my parents to keep me informed about what was going on and see what resources were available, so I could better understand. Research supports the positive adaptive value of keeping children informed about the parent’s illness and preparing them for the death. It is also helpful to provide them with opportunities to ask questions and to express their feelings, including negative ones, without social constraints.7,8,11 The physician can create such opportunities by offering to meet with the parents and adolescents together or separately and by suggesting relevant pamphlets, booklets, and Web sites (suggested resources are listed on the JAMA Web site at: http://www.jama.com). Adolescents also benefit from opportunities to review their understanding of the situation with parents, physicians, and other experts.

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Box 2. Developmental Stages and Concerns of Young Children vs Adolescents When a Parent Is Seriously Ill or Dies* (cont) Adolescents Early Adolescents, 12 to 14 Years “I cry in my room—alone!” Development: Experiences pubertal physiological changes. Formal operational thinking is inconsistent. Ambivalent about dependence and independence. Withdraws emotionally from parents; girls place more emphasis on altering relations with parents. Egocentrism. Acceptance by peers is extremely important. Normal Bereavement: May be egocentric and callous toward ill parent’s disability and needs, especially when they interfere with peer activities. After death mourns parent as adviser, guide, social and gender role model, family organizer, helpful limit setter. Has strong sense of the dead parent’s presence and describes ongoing conversations with him or her. May have intense desire to wear clothes and hold possessions of parent who died. Complicated Bereavement: School refusal, persistent anhedonia or depression, starting drug or alcohol use, shifting to a more delinquent group of friends, precocious sexual behaviors. Persistence of physical symptoms without underlying cause, more so if symptoms lead to reduced school or peer activity. Middle Adolescents, 15 to 17 Years “So much has changed, nothing will ever be the same again.” Development: Uses formal operational thinking more consistently. Shows greater integration of future with present and past. Less ambivalent about independence. Develops more intimate individual supportive relationships with peers. Has become more thoughtful, allocentric, and empathic toward family’s needs but struggles when demands in the home are excessive. Boys emphasize separation from parents; girls maintain relations with parents but alter them. Normal Bereavement: Easily overwhelmed by surviving parent’s emotional dependence, concerns, and grief. Grief has adult

When family communication about a parent’s illness is avoided or unrealistic, the child’s chances for a favorable outcome are compromised. As one mother wisely said, “I understand why parents are reluctant to tell their children about a parent’s terminal illness. The hardest part for me was realizing that I couldn’t protect my daughter from the pain of her father’s death. But then I realized that it isn’t a choice of whether she will hurt or not, but whether I will know about it.”11(p3) Interestingly, a family’s general communication skills do not necessarily predict its ability to communicate about the specific issue of a parent’s impending death.8 Physicians may provide guidance to help them through this emotionally threatening situation. For early adolescents, typical symptoms of distress both before and after the parent’s death include a decline in academic performance, sleep problems, anger, sadness, and with©2002 American Medical Association. All rights reserved.

characteristics of overwhelming sadness and painful memories, but its duration is shorter. Fears an inability to handle future independence. Is intolerant if surviving parent is excessively dependent. Worries about own genetic vulnerability. Mourns the dead parent for specific personality characteristics and also for an important believer in adolescent’s ability to function independently. Has private dialogues with the dead parent. Expresses interest in fulfilling the parent’s dreams for the adolescent. Complicated Bereavement: Persistence of adult-like grief beyond 6 months, development of more marked mood swings, withdrawal from peer interactions, persistent poor academic competence or withdrawal from other group activities. Persistent or increasing high-risk behaviors with drugs, sex, and antisocial activities. *Developmental age groups noted herein are derived from a study conducted at Memorial Sloan-Kettering Cancer Center of predominantly working and middle-class to upper-class children whose parent was ill and then died of cancer. The ranges were set by grouping children with similar cognitive, emotional, and socioecological developmental characteristics from the study sample.1,20,23-25 A more detailed description is available at: http://www.childrensgrief.com. For more discussion about childhood emotional development see the following: Inhelder and Piaget23 summarize adolescent and cognitive development, Ginsburg and Opper24 provide a readable summary of Piaget’s studies on cognitive development from infancy through adolescence, Blos26 provides a detailed summary of the psychoanalytic findings on emotional-psychodynamic development from preadolescence through late adolescence, Gilligan27 summarizes newer studies on female psychological development that challenges traditional psychoanalytic descriptions of women, Bronfenbrenner25 discusses his perspective on socioecological development, and Christ11,28 describes the integration of cognitive, emotional, and socioecological developmental attributes that led to the grouping of the 3- to 7-year-old children, one of whose parents died from cancer. This facilitated the description of within- and between-group similarities and differences in bereavement.

drawal from family discussions.4,11,34,35 Behaviorally, they may become oppositional, argumentative, and demanding. Less common symptoms in the Memorial Sloan-Kettering Cancer Center study included somatic complaints with no identifiable cause, extreme anger, depression or guilt, precocious sexual behavior, substance abuse, truancy, and shoplifting.11 More unusual in adolescents than in younger children are refusals to attend school and avoidance of peers. Parents reported that early adolescents often avoided information about the illness as well as strong emotions.28 Although middle adolescents shared most of these problems, they were often able to confront the death more directly before it occurred and to think more deeply about future consequences of this loss than early adolescents and preadolescents. At times their adult-like grief and impending separation from the family (eg, planning to go away to (Reprinted) JAMA, September 11, 2002—Vol 288, No. 10


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college) gave an anxious and depressed cast to their distress after the death.6,11 Watching the Decline, Holding Vigil: A Time of Great Distress

ROBERT: Over time, I really became immune. . . . If mom was sick, it was kind of like “Yeah, what’s new?” I got used to it kind of fast, just because it happened at such a young age. Part of what made it easier was that she really stayed active, as much as she could, in day-to-day life. My mom let me know that it was getting very close . . . but it never really hit me . . . until it actually happened, and that was probably the most surprising change of all.

On average children and adolescents exhibit more symptoms of depression, anxiety, and lower self-esteem during the parent’s terminal illness than they do after the death.36 However, there is considerable individual variability. One variation occurs when the patient, like Robert’s mother, has a long illness course characterized by exacerbations and remissions that create expectations of recovery. In Robert’s case, although he was surprised when death finally occurred, he believed that his parents and the physicians had prepared him (Table). The Death

Families’ response to the actual death of a parent will depend on their culture, religious traditions, previous rela-

Table. Building a Pathway of Open Communication With Adolescents Along the Trajectory of Illness What to Say

What Not to Say

When the parent’s diagnosis is made

Trajectory Event

“We have medicines that are used to treat this disease that have been effective in many patients. Given this type of cancer and the type of medicines we now have, I think her chances of responding to the treatments are excellent,” or depending on the actual situation, “Good,” or “Much better than it would have been a few years ago,” or “It’s hard to say.” It is helpful to encourage the parents’ and children’s questions about the disease and treatment.

“She will be fine” if the adolescent asks about the parent’s prognosis. This closes communication, leaves adolescents alone with their questions and concerns, and may distance them from professional and personal support networks. Instead, begin paving the way for hopeful but realistic communication the adolescent can trust.

When standard treatments are ineffective and death is possible

“The medications usually used for this disease are not working. We are going to have to try more experimental treatments that may or may not be more helpful with your mother. This disease cannot always be cured but we hope the treatment will slow down or reduce the cancer.” Acknowledge that it is difficult for everyone to live with uncertainty, but reassure the adolescent that everyone involved is working together to help the entire family. Discuss some of the facts about how the treatment will work. Make referrals for counseling to relevant members of the team.

“We are trying new medicines, and your mother will be OK or will be cured with them.” This approach fails to engage adolescents’ need to use their emerging cognitive capacities to cope with the stress of the situation.

When death is probable

“The medications we have been using are not working. Your mom is getting sicker now, but we will do everything we can to keep her comfortable.” Reassure adolescents that the physicians will continue to be involved, committed, and caring. Encourage questions.

“Don’t worry, everything is OK.” Such approaches can be quite confusing because they are often contradictory to what adolescents are observing and hearing at home. These approaches may cause the adolescent to lose confidence in the physician when the patient’s decline is evident.

When death is inevitable

“One can never be sure, but we think that she may not live for more than a couple of weeks.“ This is a very stressful time for the whole family and being specific enables them to make better decisions, complete necessary concrete planning, and prepare themselves emotionally for what is coming next.

“Your mother will get through this. She’s a fighter.” Such statements may delay or impede the family’s practical and emotional preparation for the patient’s death.

When death is imminent

Encourage the surviving parent to say, “It is time to say good-bye to Mom.” It is best if parents speak directly to their children about the impending death. If they cannot, they can be with the physician who assists with the discussion and answers the adolescent’s questions. Families find it helpful to learn how to be more direct in these discussions.

Saying nothing about the gravity of the situation may limit opportunities for final discussions. Later, both children and adolescents report great value to final discussions in which the parent expresses love through words, gifts, physical contact, or presence and they regret when this does not occur. Clear direction helps them overcome understandable fear and denial.

When death has occurred

Be open to discussions of final illness and treatment with parents and children, and acknowledge the adolescent’s grief. Explain that grieving is the mind’s healing process that takes time and that discussion with others is often helpful. Normalize temporary declines in functioning. Ask appropriate team members to offer bereavement counseling or implement referrals for individual or group counseling for adolescents and parents. Remind the surviving parent about some concrete ways to help the adolescent grieve, eg, by participating in burial and memorial rituals and maintaining continuity and consistency in family life.

“Don’t worry about it. Kids are resilient, and he will be OK” if the parent is concerned because the adolescent is not grieving. Although it is helpful to reassure parents that children and adolescents can cope effectively with such stresses, this is an opportunity to encourage the use of education, information, and social support that has been found to help them cope better.




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tionships, and ways of coping.37 For example, some families feel able to care for the dying patient at home, while others prefer that the patient’s terminal care be managed in the hospital.38 One Hispanic family sat through 3 vigils at home as the mother clung to life. These were stressful for the 2 adolescent children. However, they felt good about their contribution to their mother’s care and valued the contact with extended family who were also present. They described a feeling of self-satisfaction, of having done their part.11 Some adolescents avoid visiting the dying parent in the hospital, saying they find it too emotionally painful. Parents and physicians must balance honoring this avoidance with making clear when death is imminent and encouraging a final visit. Adolescents were generally grateful that adults were insistent on last visits.11 When death is sudden and/or traumatic, the physician confronts different challenges.18,39,40 For example, an unrecovered body often requires a longer time for death acceptance. Physicians may suggest means to help the mourning process by encouraging survivors to actualize the death symbolically. Such substitutions may include burying pictures and possessions of the deceased in a casket, by keeping memorabilia such as some of the ground close to the site of the death or, as in the World Trade Center disaster, small crosses constructed from the steel beams and paperweights made from broken plate glass. Physicians can also recommend participation in large group and/or small, intimate memorials, encouraging adolescents to take an active role in planning or participating in services.4,38 When a parent commits suicide, by contrast, physicians can recommend that parents, while acknowledging the legitimacy of their child’s sadness, anger, and hurt feelings, help them reframe how they view the parent’s action so that they may consider that suicide is not caused by a lack of love or lack of caring for the rest of the family but that depression, the disease, temporarily blotted out all such feelings. The disease is the villain, not the parent.40,41 Death’s Immediate Aftermath

ROBERT: In the very beginning, the most helpful thing was letting me get back into the normal groove of things and not bringing it up so much. . . . The feeling of grief was not immediate at all. I think it really took a couple of weeks for my feelings to settle. Getting Back Into the Groove. Robert’s reluctance to immerse himself in grief and his eagerness to return to school and peers reflects the ability of young adolescents to defend against the painful emotions associated with loss. Young adolescents fear public displays of emotion. Their greatest fear is being perceived as “different” from their peers at a time when they are striving to fit in. Middle adolescents may have more difficulty compartmentalizing their feelings. Consequently, they can experience a more intense, prolonged, adult-like grief that interferes with a rapid return to normal activities,4,11,35 unlike what Robert reports. ©2002 American Medical Association. All rights reserved.

Validating the Adolescent’s Grief. Although immediately after his mother’s death Robert wanted to be able to resume his usual activities, he also complained that people then got used to not talking about it, which made him feel lonely. The desire to return to life before the loss and recognizing that life has changed forever is a common struggle and parallels the need of children and adolescents to both approach and avoid internal acceptance of the profound external changes. Directive-feeling-expression exercises are among newer interventions suggested to assist adolescents with prolonged avoidance of their grief. Further research is needed to clarify outcomes of these interventions.28,42-45 Participation in the Funeral and Burial Rites. In most religions, mourning rituals are designed to provide emotional support for the bereaved, including children and adolescents.38,34 The majority of children and adolescents report attendance at memorials to be a positive experience as they share with family and friends their sadness and celebrate the positive aspects of their parent’s life.2,4,38 Although young adolescents may elect to withdraw from certain rites, such as the actual burial, some want to participate actively in other parts of the ceremony. Physicians can suggest to parents that adolescents read poetry, deliver a eulogy such as a letter to the parent who died, or have others express their thoughts. Middle adolescents are inclined to be active participants in all burial rites and often bring special friends with them for support. Robert attended his mother’s memorial service with his father and brother and accepted condolences from his own and his parents’ friends at their home in the traditional Jewish ritual of sitting shivah. Reconstitution

ROBERT: I think that the golden rule of this entire experience is . . . to get your feelings out there safely and find a person who[m] you feel comfortable talking with. It really doesn’t matter what they say to you, as long as you’re able to say what you need to say to them. The worst thing that one can do is just keep it bottled up inside. I’ve written a lot of poetry that has helped me get through some of the grief and enabled me to express some of my feelings. The term reconstitution, rather than recovery, has more recently been used to describe the postdeath period, in part because successful coping at this phase challenges adolescents to change their view of themselves and their relationships to the parent who died and to the surviving parent in profound ways.11 Successful reconstitution results in a decrease in the frequency and intensity of grief and a gradual return to previous levels of functioning: as Robert stated, “getting back in the groove.” Recent prospective studies suggest that by 6 to 12 months, most adolescents are well on the road to accomplishing this.4,8,36 Yet, between 13% and 17% of bereaved children and adolescents have been reported to demonstrate ineffective short-term reconstitution.8,10,11,43 One study reported that twice the number of children and (Reprinted) JAMA, September 11, 2002—Vol 288, No. 10


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Box 3. Risk Factors Impeding and Protective Factors Promoting Reconstitution Risk Factors Concurrent stressful life events A negative or nonsupportive relationship with the surviving caregiver A poor relationship with the parent who died Low self-esteem and an external locus of control Preexisting mental health problems in the adolescent or the surviving parent or caregiver Circumstances of the death, such as violent or traumatic death Being younger than 6 years or 12 to 14 years (early adolescence) when the death occurs Protective Factors Having a relationship with the surviving parent or caregiver characterized by open communication, warmth, and positive experiences Surviving parent able to sustain parenting competence. Feeling accepted by peers and other adults, such as relatives and teachers Higher socioeconomic status Internal locus of control, religiousness Intellectual and social competence The opportunity to express thoughts and feelings about the deceased parent and have them validated by others

adolescents (75%) demonstrated elevated distress scores during a 2-year follow-up than at the 1-year follow-up evaluation. This suggests that there may be a delayed appearance of symptoms attributable to the death and its consequences.4(p98) Although complicated, grief is less clearly defined in children and adolescents than in adults; traumatic grief has been used to refer to conditions in children that manifest consequences of both grief and trauma.15-17,25,40,46,47 Cohen et al48 and other investigators suggest that when trauma and bereavement symptoms are both present, it is advisable, and often essential, to address and at least partially resolve the trauma issues before the bereavement issues can be successfully processed.16,28,39,49,50-52 It is important to understand that children and adolescents can develop symptoms of traumatic grief in situations that are not objectively perceived as traumatic by adults.47 The ultimate goal of current studies of traumatic grief responses in children and adolescents to the death of a loved one is to find therapeutic approaches that might lead to the resolution of these manifestations of both trauma and grief.14,15,32 An important first step in reaching this goal is to identify the presence and intensity of these responses. One measure of the University of California, Los Angeles Expanded Grief Inventory developed by C. Layne et al (unpublished data, 2001) shows great promise for having categorized the components of traumatic grief as the follow1276 JAMA, September 11, 2002—Vol 288, No. 10 (Reprinted)

ing: complicated grief, uncomplicated grief, and traumatic responses to the death of a loved one. Although a parent’s death increases the child’s subsequent risk for psychosocial problems, adaptation and reconstitution are moderated by the presence of additional stressors53 and by the balance between risk and protective factors.13,34,52,54-56 For example, the impact of Robert’s experience with 2 previous deaths was balanced by powerful protective factors: the excellent communication within the family, his positive relationship with his mother, and helpful communication with the family’s physicians. Two factors that consistently influence the outcome of bereavement are the quality of the relationship with the surviving parent and the quality of child care both before and after the death.30,36,54,55,57-59 Epidemiologic studies and recent prospective studies have identified a variety of additional risk and protective factors summarized in BOX 3.4,52,56,60 Coping is a complex, multifaceted, and highly individual process in each adolescent. Successful reconstitution addresses at least 3 major tasks: (1) engaging in the process of mourning the dead parent: (2) changing the relationship with both the dead parent and the surviving parent or caregiver; and (3) overcoming barriers to fulfilling developmental tasks.4,11,12 Mourning the Parent

What Robert found most helpful in the early period after his mother’s death was the opportunity to share his feelings with others. Expressing thoughts and feelings to receptive peers and adults provides a sense of release—an opportunity to identify misconceptions (eg, a sense of culpability about the illness and death) and rectify them—and helps build and strengthen one’s support network.7,10,35,61 Robert demonstrated an unusual capacity for selfreflection. Such reflection is uncommon in most adolescents. Physicians should encourage parents to help create opportunities for expression of memories using holidays or marker events for structured remembrance when more spontaneous discussions are difficult.2,12,38 These could include visits to the cemetery, brief services of remembrance, or more informal activities such as the following example from our own study11: A father described how he engaged his 3 adolescents in decorating the house for Christmas 4 months after their mother died. They looked at pictures from past Christmases to remind them how she had organized the decorations, and invited extended family and friends over for the traditional Christmas dinner.

Adolescents often need interested adults, including physicians, to evoke ongoing emotional reminiscence to facilitate constructive mourning. They may be able to express feelings through music, in writing, in art, or in drama. Participating in peer groups focused on loss, even those that are not bereavement-oriented, also may help. Adolescents may be willing to talk about dreams involving the dead par©2002 American Medical Association. All rights reserved.


ADOLESCENT GRIEF

ent or describe having a sense of the parent’s presence. They may cherish the parent’s possessions, even by wearing the parent’s clothes, and engaging in activities the parent valued, all evidence of mourning.4,6,11,35 Altering the Relationship With the Dead Parent

ROBERT: [I try] to not [just] walk past a picture [of her], but to stop and look at it. . . . I think being closed to the fact that you’ve lost this person is probably the worst thing [you] can do because you deepen the wound and lose a great deal of emotional attachment to the memory of the person. The traditional view of adult mourning in the United States emphasizes the severance of emotional ties with the deceased, so as to be able to invest in new relationships.12,62 However, as Robert describes, and recent findings suggest, greater emphasis on retaining a positive emotional tie to the deceased and a continuing sense of the person’s presence is more consistent with the experience of grief in Western culture.12 Further study is needed to clarify when such continuing bonds are adaptive and when they may represent complicated grief reactions.45,62,63 Overcoming Barriers to Fulfilling Developmental Tasks

ROBERT: I don’t think it’s connecting with people who know about my mom as much as it is connecting with other teenagers and opening myself up to them . . . just feeling ignored, in some sense, because they don’t know how to deal with the loss of somebody’s parent, is probably the biggest problem that I’ve experienced. Several developmental tasks of adolescence are challenged by a parent’s death. Most threatened is their confidence in independent functioning, their emotional withdrawal from the family, their acceptance by peers, and the emergence of intimacy with peers. Parents naturally turn to adolescents to help when a spouse dies because of their greater maturity and abilities than younger children. However, adolescents may feel threatened, become distressed, and withdraw if the responsibilities that they are given seem excessive. Because nonbereaved adolescents fear strong emotions and feel threatened by the death of a peer’s parent, they not uncommonly avoid or reject the bereaved adolescent.30,35 As Robert describes they may simply act as if nothing has happened. Robert’s effort to communicate through poetry, is a strategy that engages peers more effectively than direct discussion. Other strategies include music, art, and drama. Adolescents also may have difficulty achieving competence in academic, athletic, and other skills that may have been taught or practiced by the deceased parent. There are a number of symptoms that accompany normal mourning. Adolescents often need reassurance that their difficulty in concentration, anhedonia, anger, feelings of helplessness, and reduced energy are part of their grief work and will, in time, dissipate. Participation in memorials and altruistic activities, such as community services for bereaved individuals, can promote feelings of mastery and reduce feelings of helplessness. Discussions among the child, parent, ©2002 American Medical Association. All rights reserved.

and concerned teachers or coaches may yield effective strategies to help them regain a sense of control, such as signing off on homework, and scheduling regular check-ins to help overcome school and athletic slumps, and encouraging them to learn relaxation, reframing, and thoughtstopping techniques. Easy access to school counselors can help some adolescents who experience episodic overwhelming grief in the classroom. Finally, the prospect of going away to college or living on their own may cause bereaved middle adolescents distress, rather than the excitement their nonbereaved peers generally feel. They may worry about how the family will manage without them, but they also may feel anxious about this separation. Physicians also must be aware that many middle adolescents whose parent has died of cancer worry about their genetic vulnerability to this disease and can benefit from discussion of their risks and appropriate health care behaviors. CONCLUSION ROBERT: [She] created the roadmap [and] left us lasting memories. When I think about the lessons that she’s taught me, I’m also able to think about her. I’m able to keep my memory of her alive, and [I’m] also able to continue my life successfully . . . Mrs S demonstrated extraordinary openness with her son and great courage and resolve to be his protector and guide even as she faced her own death. She negotiated with her physician to do everything he could to keep her alive until Robert’s bar mitzvah, the Jewish rite of passage that marks the beginning of manhood. It was probably of great symbolic importance for her to feel she was leaving behind a young man and not a boy. Although few patients are able to be as direct as Mrs S was, physicians can help them to be more effective with timely information and support. Death is often viewed by physicians as a failure.11,64 Helping patients prepare their children for death can also help physicians feel less powerless as they exert some control over how the loss, if not the disease, is finally managed. Funding/Support: This work was supported by grants MH41967 from the National Institute of Mental Health, PRB-24A from the American Cancer Society, the van Ameringen Foundation, the Society of Memorial Sloan-Kettering Cancer Center, by the Project on Death in America of the Open Society Institute, and the Fire Department of New York Counseling Service Unit. The Perspectives on Care at the Close of Life section is made possible by a grant from the Robert Wood Johnson Foundation. Other Resources: For a list of relevant resources, see the JAMA Web site at http: //www.jama.com.

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36. Siegel K, Karus D, Raveis VH. Adjustment of children facing the death of a parent due to cancer. J Am Acad Child Adolesc Psychiatry. 1996;35:442-450. 37. Kagawa-Singer M, Blackhall L. Negotiating cross-cultural issues at the end of life: “You got to go where he lives.” JAMA. 2001;286:2993-3001. 38. Silverman P, Worden J. Children’s understanding of funeral rites. Omega. 1992; 25:319-331. 39. Rando T. Complications of mourning traumatic death. In: Dolca K, ed. Living with Grief and Sudden Loss. Washington, DC: Hospice Foundation of America; 1996:139-160. 40. Goldman L. Breaking the Silence: A Guide to Help Children With Complicated Grief: Suicide, Homicide, AIDS, Violence and Abuse. Philadelphia, Pa: Taylor & Francis Inc; 1996. 41. Pfeffer CR, Jiang H, Kakuma T, Hwang J, Metsch M. Group intervention for children bereaved by the suicide of a relative. J Am Acad Child Adolesc Psychiatry. 2002;41:505-513. 42. Layne C, Pynoos R, Saltzman W. Trauma/grief focused group psychotherapy: school based post-war intervention with traumatized Bosnian adolescents. Group Dynamics Theory Res Pract. 2001;5:277-290. 43. Saltzman W, Pynoos R, Layne C. Trauma/grief focused intervention for adolescents exposed to community violence: results of a school-based screening and group treatment protocol. Group Dynamics Theory Res Pract. 2001;5:291-303. 44. Nolen-Hoeksema S, Larson J. Coping With Loss. Mahwah, NJ: Lawrence Erlbaum Associates; 1999. 45. Siegel K, Mesagno F, Karus D, Christ G, Banks, Moynihan, R. Psychosocial adjustment of children with a terminally ill parent. J Am Acad Child Adolesc Psychiatry. 1992;31:327-333. 46. Prigerson H, Jacobs S. Caring for bereaved patients: “All the doctors just suddenly go.” JAMA. 2001;11:1369-1376. 47. Pfefferbaum B, Nixon S, Tucker P, et al. Posttraumatic stress responses in bereaved children after the Oklahoma City bombing. J Am Acad Child Adolesc Psychiatry. 1999;38:1372-1379. 48. Cohen JA, Mannario AP, Greenberg T, Padlo S. Childhood traumatic grief: concepts and controversies. Trauma Violence Abuse. In press. 49. Jacobs S, Traumatic Grief. Philadelphia, Pa: Brunner/Mazel; 1999. 50. Pynoos R, Nader K. Children’s exposure to violence and traumatic death. Psychiatr Ann. 1990;20:334-344. 51. Cohen J, Berliner I, Mannarino A. Treatment of traumatized children: a review and synthesis. J Trauma Violence Abuse. 2000;1:29-46. 52. Gersten JC, Beals J, Kallgren K. Epidemiology and preventive interventions: parental death in childhood as a case example. Am J Community Psychol. 1991; 19:481-500. 53. Rutter M. Stress research: accomplishments and tasks ahead. In: Hagerty R, Sherrod L, Garmezy N, Rutter M, eds. Stress, Risk and Resilience in Children and Adolescents. Cambridge, England: Cambridge University Press; 1994:354-385. 54. Tremblay GC, Israel AC. Children’s adjustment to parental death. Clin Psychol Sci Pract. 1998;5:424-438. 55. Bifulco A, Harris T, Brown G. Mourning or early inadequate care: reexamining the relationship of maternal loss in childhood with adult depression and anxiety. Dev Psychopathol. 1992;4:433-449. 56. Rutter M. Psychosocial adversity and child psychopathology. Br J Psychiatry. 1991;174:480-493. 57. Elizur E, Kaffman M. Factors influencing the severity of childhood bereavement reactions. Am J Orthopsychiatry. 1983;53:669-676. 58. Kaffman M, Elizur E, Gluckson L. Bereavement reactions in children: therapeutic implications. Isr J Psychiatry Relat Sci. 1987;24:65-76. 59. Saler L, Skolnick N. Childhood parental death and depression in adulthood. Am J Orthopsychiatry. 1992;62:504-516. 60. Reinherz H, Giaconia R, Hauf A, Wasserman M, Silverman A. Major depression in the transition to adulthood. J Abnorm Psychol. 1999;108:500-510. 61. Knight-Birnbaum N. Therapeutic work with bereaved parents. In: Altschul A, Battin A, Pollock G, eds. Childhood Bereavement and Its Aftermath. Madison, Wis: International Universities Press; 1988:107-143. 62. Stroebe M, Schutt H. Models of coping with bereavement: a review. In: Stroebe M, Hansson R, Stroebe W, Schut H, eds. Handbook of Bereavement Research. Washington, DC: American Psychological Association; 2001:375-403. 63. Bonanno G, Field N. Examining the delayed grief hypothesis across 5 years of bereavement. Am Behav Sci. 2001;44:798-816. 64. Meyer C. Clinical Social Work in the Eco Systems Perspective. New York, NY: Columbia University Press; 1983.



Resources for Parents and Professionals Pamphlets

Web Sites

It Helps to Have Friends When Mom or Dad Has Cancer. Washington, DC: American Cancer Society; 1987. Telephone: (800) ACS-2345. What About Me? A Booklet for Teenage Children of Cancer Patients, by Linda Leopold Strauss. Cancer Family Care Inc, 7710 Reading Rd, Suite 204, Cincinnati, OH 45237. Telephone: (513) 731-3346. Published in 1987. When Someone in Your Family Has Cancer. National Cancer Institute, Publications Ordering Service, PO Box 24128, Baltimore, MD 21227. Telephone: (800) 4-Cancer. Published in 1990. Kids Worry Too. University of Nebraska Medical Center, Child Life Deparment, Room 4145, 600 S 42nd St, Omaha NE 68198-2165. Telephone: (402) 559-6775. Published in 1990.

American Academy of Child and Adolescent Psychiatry

Books

Edleman H. Motherless Daughters. New York, NY: Bantam Doubleday Dell; 1994. Fitzgerald H. The Grieving Child. New York, NY: Simon & Schuster; 1992. Fitzgerald H. The Grieving Teen. New York, NY: Simon & Schuster; 2000. Harpham WS. After Cancer: A Guide to Your New Life. New York, NY: WW Norton & Co Inc; 1994. Harpham WS. When a Parent Has Cancer: A Guide to Caring for Your Children. New York, NY: Harper Collins; 1997. This includes Becky and the Worry Cup, an illustrated children’s book that tells the story of a 7-year-old girl’s experience with her mother’s cancer. The child can read this book alone or together with a parent. Hermann J, Wojtkowiak S, Houts P, Kahn SB. Helping People Cope: A Guide for Families Facing Cancer. Pittsburgh: Pennsylvania Dept of Health; 1988. Free copies are available for those who call (800) 722-2623. McCue K. How to Help Children Through a Parent’s Serious Illness. New York, NY: St Martin’s Press; 1994. Heiney SP, Hermann JF, Bruss KV, Fincannon JL. Cancer in the Family: Helping Children Cope With a Parent’s Illness. Atlanta, Ga: American Cancer Society; 2001. Videotapes

Talking About Your Cancer: A Parent’s Guide to Helping Children Cope. Philadelphia, Pa: Fox Chase Cancer Center; 1996. Telephone: (215) 728-2668. When a Parent Has Cancer: Looney Professor Boonie Explains Cancer to Kids. Thunderbird Samaritan Medical Center, Glendale, AZ 85306. Telephone: (602) 588-5450. ©2002 American Medical Association. All rights reserved.

http://www.aacap.org Provides extensive information for families and professionals in a section titled “Facts for Families and Other Resources” that includes the topics of children’s grief and trauma. American Hospice Foundation

http://www.americanhospice.org An extensive selection of resources for educators, employers, and families about helping children cope with grief. American Red Cross

http://www.redcross.org/services/disaster/beprepared/forchildren .html Provides information for families and professionals on the impact on and resources for children who confront a broad range of disasters. End of Life Physician Education Resource Center

http://www.eperc.mcw.org Provides peer-reviewed end-of-life educational resources for educators. Growth House

http://www.growthhouse.org The largest resource for end-of-life educational materials on the Web, with links to resources on grief and bereavement, quality of care, general death and dying topics, and family support. Last Acts

http://www.lastacts.org Provides a broad range of resouces related to end-of-life care, including professional precepts, innovative programs, and community-based resources. National Center for PTSD

http://www.ncptsd.org Includes a broad range of information and resources for professionals about treatment, prevention, and research in work with traumatized children, including trauma-related grief. National Institute of Mental Health

http://www.nimh.nih.gov/publicat/violence.cfm Includes a section for professionals on helping children cope with violence and disasters. (Reprinted) JAMA, September 11, 2002—Vol 288, No. 10


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