Over the past decade of research, the perspectives of bereaved parents have proved to be an invaluable resource for the development of pediatric palliative care.⁵^–⁷ Such research has explored the care provided to the child and family throughout the illness and into bereavement, rather than an exclusive focus on the loss itself.⁸^–⁹ Approaching bereaved families for research purposes had been questioned in terms of the risk of inflicting psychological harm or distress.¹⁰ Yet several studies have shown that parents find participation to be a positive and therapeutic experience—more so than non-bereaved parents.¹¹^–¹³

This chapter focuses on the interplay between the universality of the grief experience and the uniqueness of each individual and family’s response. The phenomenon of anticipatory grief in the family is described, followed by a discussion of bereavement (Box 5-1). Particular emphasis is on the role of assessment in bereaved families and the implications for intervention, including cultural and spiritual dimensions. Clinical vignettes of bereaved families highlight the themes of the chapter. The grief of the palliative care clinicians who care for these children and families is also addressed.

BOX 5-1 Anticipatory Grief and Bereavement: Key Concepts

Anticipatory grief and bereavement—the before and after of loss—begin at the time of the child’s diagnosis and extend years after his or her death.

Anticipatory Grief

• Grief expressed in advance when a loss is perceived to be threatening or inevitable

• Child grieves for everyone and everything in his or her life

• Family faces cumulative losses leading up to the child’s death and then bereavement

• The child and family may feel overwhelmed by the intensity of their emotions, not recognizing that underlying their sadness is the even deeper phenomenon of anticipatory grief. Clarifying this distinction can be of relief and comfort

• The death of another patient engenders powerful grief—and anticipatory grief—for ill children and their families

Bereavement

• A process that ebbs and flows over a lifetime. No absolute timeframe for its resolution

• Families often express a sense of double loss: of their child as an individual and a member of the family and community, and of their professional family, the team who cared for the child, often over months and years

• Bereavement follow up is an integral part of comprehensive pediatric palliative care and assuages the family’s sense of abandonment

• Bereavement assessment, and re-assessment over time, is both prevention and intervention; in particular for those families judged to be at risk

• Despite mourning the same child, individuals in the family grieve in different ways and on different schedules. Being out of sync with one another is a normal phenomenon

• Siblings grieve deeply for their brother or sister. However, because children’s modes of expressing grief may differ substantially from that of adults’, their mourning may be underestimated or missed entirely

The Family Unit

In modern times, the definition of family has expanded to encompass many diverse constellations. From the outset, a family’s own definition of their family unit and the role of each member should be elicited. Without such information, clinicians’ assumptions of inclusion or exclusion may be faulty, and valuable sources of support overlooked. The nuclear family of child, siblings, and parents is at the core, surrounded by the extended family. In particular, grandparents frequently play a major role. Close friends may be indistinguishable from family, especially in palliative care situations. With the changing structure of the family, latitude must be made for alternative and complicated arrangements. These include divorced and reconstituted (blended) families, with their inherently conflicted histories and new alliances; single-parent families; and children of gay parents.¹⁴ The composition of the family frames many other factors, including developmental level; psychological history, particularly coping with past losses and trauma; sources of support; and cultural and spiritual beliefs.

The developmental level of the family unit is frequently a salient dimension in the impact of a child’s illness and death.¹⁵^–¹⁸ Young parents are often just learning how to incorporate children into their relationship as they begin to expand their definition of family. The premature death of a young child can send parents reeling into uncertainty about their identity: Are they still parents? Are they still a family? Furthermore, with little prior experience of negotiating loss or death as a couple, they may experience confusion and fear about each other’s reactions. These families often need more structured guidance than an older family that has already negotiated previous losses.

A universal phenomenon in the bereavement process is that individuals in the same family grieve in different ways and on different schedules.¹⁵^–¹⁸ Despite mourning the same child, family members are often out of sync with one another in their experience and expressions of grief. Misunderstanding, guilt, anger, and resentment, and a profound loneliness, often arise when this phenomenon is not understood.

It is crucial to recognize the impact of background, culture, and language on the family’s experience of the child’s illness and treatment, how they make decisions along the way, and on the grief process.¹⁹ Cultural perceptions may challenge the use of language. For instance, in English, compassion connotes a deep caring. In some Spanish traditions, however, the word is primarily connoted with care for the dying. Thus, compassion may communicate an unintended message to the family. Deepening the awareness of such nuances and differences enables bereavement care to begin where the family is cuturally.

As for children, their modes of expressing grief may differ substantially from adults’ and thus their grief’s meaning and depth are often underestimated or even missed completely (Fig. 5-2). All too often, siblings become disenfranchised grievers,²⁰ their loss is minimized compared to that of their parents’. They are often admonished to be strong for their parents with little acknowledgment of their own mourning process.²

Fig. 5-2 Is it OK to cry?

(Reprinted with permission from Rob Rogers: © The Pittsburgh Post Gazette/Dist. by United Feature Syndicate, Inc.)

Current Research

Research in the field of anticipatory grief and bereavement is only now emerging; until recently, most studies have been descriptive or conceptual in nature. Thus caution must be exercised in making overarching assumptions from such new data. Rather, the research provides a context within which the characteristics of an individual family may be viewed.

Parents

The loss of a child is described as one of the most stressful life events possible.²¹ The grief is more intense and longer lasting than that following any other type of loss.²² Some studies suggest it may take at least four to six years to “work through” the death of a child²³ (Fig. 5-3). The loss itself is compounded when parents have witnessed their child’s protracted physical and emotional suffering throughout the illness.²⁴^–²⁶ Despite the traumatic nature of the experience, and the fact that bereaved parents are at increased risk of physical and psychological morbidity,²⁷^–²⁹ most individuals are able to come to terms with the loss over time. Two types of factors have been studied for their impact on bereavement outcome in parents: those that can be managed (modified or avoided) in the current health care setting, and those that cannot.

Fig. 5-3 Bereaved parents’ reports of their grief following the loss of a child to cancer 4 to 9 years earlier: Although fewer fathers than mothers have worked through their grief at four to six years after the death of the child, they have come to terms with their loss to a greater extent at seven to nine years.

Factors that lie beyond the scope of the healthcare setting include a family’s history of previous losses, pre-morbid conditions, and financial problems. Even the age and gender of the child has been found to affect parental bereavement outcome.^27,^30,³¹ For fathers, the risk of anxiety and depression is greater after the death of a child older than 8, nearly twice as high as those fathers whose younger child died.²⁷ No such relationship to the child’s age is seen in mothers. Gender of the child also affects mothers and fathers differently. The risk of morbidity in mothers is higher when a daughter dies.³¹ Although such factors are not changeable, it is extremely important for clinicians to be aware of them in their daily work with families.

Factors that can be modified within the healthcare setting are all related to the quality of palliative care. For example, the absence of clinicians at the moment of a child’s death increases the likelihood of parents reporting unrelieved pain, as well as an intensely difficult death.⁸ Location of the child’s death is another factor in bereaved parents’ morbidity: fathers are less likely to suffer from depression if the child dies at home.³² It must still be determined whether the significant factor is the actual location of the child’s death—or the planning of it.³³

Open and honest communication has been emphasized as crucial in pediatric palliative care.³⁴^–³⁶ It has been found that providing psychological support to parents from the healthcare team, even in the last month of their child’s life, facilitates their grieving process. Informing families about the evolving nature of a child’s illness and prognosis is always challenging. Communication about the child’s prognosis has proved valuable for the bereavement outcome.²³ Although most parents want to be fully informed of their child’s status, many clinicians continue to avoid this type of communication. Parents who have been informed that their child’s death is imminent are, not surprisingly, more likely to be aware of the pending death.³⁷ Their awareness impacts the opportunity for them to tailor the child’s care according to their wishes. Bringing the child home, as well as planning for a death at home, is more likely to be considered if parents are cognizant of the imminence of death.³⁸ Furthermore, these parents are more likely to talk about death with their child, even more so when they perceive the child also to be aware, which is an approach that has been shown to reduce the risk of psychological morbidity in bereavement.³⁹ However, many children in pediatric palliative care are unable to engage in any type of communication because of age, developmental delay or the nature of the illness. Mothers of children who had severe malignancy and were unable to communicate in their last week of life were more likely to think that death would be best for the child; this finding was not consistent for the fathers.⁴⁰

Assisting bereaved families is an integral part of pediatric palliative care, beginning with the issues around anticipatory grief at the child’s diagnosis. However, research on bereavement intervention is still in its early stages, and the efficacy of counseling has not yet been well validated.⁴¹ Several studies have shown that both professional and social support is beneficial for parents’ grief outcomes, although not all parents find it helpful. Some parents choose to cope on their own, with or without support from family or friends. Over the long term, the social network has proved to be particularly valuable for many bereaved parents. Fathers talk mainly with their spouse, while mothers confide in family, friends, and other bereaved parents. Both types of sharing have a beneficial impact on the grief outcome.²³ The identification of parents at risk for pathological grief reactions, and designing optimal intervention for them, remains a critical topic for future research. Emerging from the research are the following recommendations in caring for bereaved parents:

• Alleviate the child’s suffering during the illness through optimal symptom management,

• Communicate openly and honestly with parents,

• Be present at the time of child’s death,

• Inform parents about the demonstrated value of open communication with and support from family and friends,

• Recommend that parents seek professional psychological support during the child’s illness and following the death, particularly when there are risk factors in the family.

Although long-term consequences often refer to sequelae one or two years following a loss, a time frame for parental bereavement has not been established in the literature.⁴² Hospitalization for psychological morbidity and an elevated incidence of death have been reported as long-term consequences following the death of a child.^28,⁴³ In a Danish study, it was found that both natural and unnatural deaths are more likely among bereaved parents than in a matched sample who were not bereaved. Bereaved mothers had an increased risk throughout the study period of 3 to 18 years, while for fathers the risk was limited to the first 3 years. Unresolved grief emerges as a specific risk factor for the psychological and physical health of both mothers and fathers in the long term. Bereaved fathers with unresolved grief are seven times more likely to report sleep disturbances,⁴⁴ with the ensuing impact on their capacity for work and overall well-being. A common, and damaging misconception, is that the incidence of separation or divorce is elevated in couples whose child has died. Yet a recent study on long term marital status shows the opposite: bereaved parents actually are less likely to divorce or separate than non-bereaved.⁴⁵

Siblings

Research on bereaved siblings is extremely limited; their long-term adjustment has yet to be explored in a systematic fashion. However, certain issues have emerged in both clinical observations and empirical studies.⁴⁶^–⁵¹ Siblings are often referred to as being invisible because of the parents’ intense involvement in the care of their ill child.^52,⁵³ During the illness, the siblings desire open and honest communication within the family, adequate information from clinicians, involvement in the care of the sick child, and support to continue their own interests and activities.⁵²^–⁵⁴ Parents often try to protect the siblings from involvement in the child’s illness, particularly end-of-life care, thinking that it will shelter them from trauma. Yet this well-intentioned approach instead leads the siblings to feel abandoned and excluded from the family tragedy,⁵⁵ with these feelings persisting long into bereavement. Findings suggest that after the death, siblings perceive their life to change, not only within the family but also in relationships with others outside the family. Clinicians can play an important role in communicating directly with siblings whenever possible and educating the parents about the importance of addressing their needs.

Anticipatory Grief

Anticipatory grief is the process that links everyone who is facing the loss of the child. It is catapulted into being at the time of diagnosis, and wends its way through the illness trajectory until the moment of death. Anticipatory grief initially resembles the grief that immediately follows a death: emotions are alternately raw and numb, and very much in evidence.⁵⁶ The classic definition of anticipatory grief is “grief expressed in advance when the loss is perceived as inevitable.”⁵⁷ A broader definition includes loss that is threatened, with the implication of a much longer time frame. Experientially the process reflects the emotional response to the pain of separation before the actuality of loss. The child grieves multiple losses: of his or her healthy self, of function and role, of separation from loved ones. (For discussion of anticipatory grief in the child, see Chapter 3.) The family members face anticipatory grief, and then bereavement after the child dies. They move from the realization that “Our child is going to die” to an even more anguished dawning that “We are going to lose our child.”⁵⁶ It is at this juncture that the recognition of an inevitable separation has begun. The ebb and flow of anticipatory grief charts an individual course for each family, dependent on the nature and length of the illness trajectory, as well as psychological and cultural factors.

Katy, a 7-year-old girl, had a recurrent dream: “I want to be with my mother, and I can never quite get to her.” The girl recounted the dream in a joint psychotherapy session with her mother. Whereas the mother found the dream “excruciating,” her daughter articulated that “even though the dream is very sad, it’s not a nightmare.” The dream eventually provided the focal image for mother and child to work through the anticipatory grief process.^{56,p. 70}

The child and family may feel overwhelmed by their intense emotions, not understanding the source. Often they do not recognize that below the sadness lies the deeper and more complex phenomenon of anticipatory grief. Articulating this distinction can be a powerful therapeutic intervention. It is also important to explain that grief arises not only around the finality of death, but also in an ongoing way for the cumulative losses that occur over the course of an illness.

A mother berated herself: “I can’t understand why I cry all the time. My daughter is doing reasonably well right now. It makes me feel guilty when I cry like this – I feel as if I am burying her before she actually dies.” When the psychologist explained the concept of anticipatory grief, she experienced enormous relief at being able to attribute a meaning to her tears.

A certain degree of disengagement from the child on the part of family members, or from one another, may be part of the anticipatory grief process. In a self-protective move against loss and further pain, the family may seem “to leave before being left.” Such disengagement may be seen in a general emotional withdrawal from the child, or it may take specific forms: for example, parents may begin to focus on the sibling nearest in age to the patient in a type of “replacement”; or one member of the couple begins an extramarital affair; or a sibling may distance him or herself from the family.

These phenomena are neither inevitable, nor, when they occur, irreversible. However, they do signify a family’s difficulty in negotiating a phase of the anticipatory grief process. It is crucial that the family not feel chastised for their distancing maneuvers. Rather, this is often a time for a referral to a mental health clinician for individual, marital, or family therapy.⁵⁶

The sense of exhaustion that accompanies a remission-relapse cycle in an illness is inordinate. The family may find it increasingly difficult to know whether to prepare for loss or for life—and how to apportion their emotional energy. A similar discomfort may occur when a patient lives beyond his or her prognostic expectancy. The family is jubilant at having more time with the child but they may also wonder how they will continue to manage the ongoing threat of death.

Three healthy siblings complained to the psychologist: “Every holiday our parents say: ‘Let’s make this holiday perfect for your brother, since it may be his last.’ Meanwhile, he has lived for four years. How long are we supposed to keep this up?”^{56,p. 73}

Enormous grief and anticipatory grief are engendered by the death of another patient. The reverberations are particularly intense when the children have the same disease. On one level, the child and family grieve the loss of their acquaintance or friend. On a deeper level, they are struck with the awareness: “This could have been me/our child … and will I/our child be next?”⁵⁶ This close sense of identification provides an opening for the child and family to address their own sadness and fear. It is a time for the clinician to be actively present and reassuring until the acute anxiety and grief abate.

Because there are no social rituals to mark anticipatory grief, as there are in bereavement, people not directly involved are often confused as to what the family is experiencing, or how to help. Family members frequently describe a profound sense of loneliness and separateness from others as they live the illness experience.

“Right now we are living in a different world … Our friends in the ‘outside world’ care about us, but they can’t really understand what we are living through. Our closest people right now are the other families at the hospital and our team.”

Therapeutic interventions by the palliative care team, in addition to identifying and explaining anticipatory grief, include facilitating family dialogue about their ongoing shared sadness, suggesting legacy-building activities such as (filming or scrapbooking) and encouraging interaction with other families who are going through a similar experience. Most important through “the long haul” of prolonged illness is the accessibility and availability of the clinicians who best know the child and family.

With the approach of the child’s death, the family confronts the full intensity of anticipatory grief. The child faces the ultimate leave-taking from everyone and everything; the family stands at the brink of their new life ahead, facing the specter of life without the child. This sequence of anticipatory grief and then bereavement is represented metaphorically (in Fig. 5-4): desperate, powerless and ultimately unsuccessful pleas to prevent the death of a loved one followed by ensuing sadness and attempts at solace.

Fig. 5-4 Linus and the Snowman.

(Reprinted with permission of PEANUTS. Copyright United Feature Syndicate, Inc.)

Bereavement

Death ends a life, but it does not end a relationship…

Robert Anderson ^{58, p. 77}

Parenting is a permanent change in the individual. A person never gets over being a parent. Parental bereavement is also a permanent condition. The bereaved parent, after a time, will cease showing the… symptoms of grief, but the parent does not “get over” the death of a child.^{59, p. 178}

Bereavement follow-up by the professional team is an intrinsic component of comprehensive pediatric palliative care. Without such continuity, many families express anguish over the experience as a double loss. Primary is the death of their child, of an individual, and of a member of the family and the greater community. Compounding this grief, they mourn the loss of their professional family – the treatment team whom they have known and trusted, often over months and years.⁵–^7,^9,⁶⁰Contact from a team member after the child’s death not only assuages the family’s sense of abandonment, but it can also serve a crucial preventive role by identifying families at risk for serious physical, psychological, and social sequelae.

In many circumstances, the opportunity for ongoing face-to-face assessment and follow-up does not exist. Other means of communication, including periodic phone calls or notes, can provide some evaluation and serve as a springboard for referring a family to local resources. Events such as an annual hospital memorial service provide valuable and natural opportunities to assess a family’s functioning: those who attend are eager to reconnect with staff, and often quite spontaneously describe their life since the child’s death.

Assessment

Under ideal circumstances, a mental health clinician carries out a comprehensive bereavement assessment. However, other scenarios are possible. If a family feels more comfortable with another team member, that person can function as a bridge by introducing and supporting the importance of the assessment. Bereavement assessments can be effectively done by an interdisciplinary duo: one with a medical background, the other with psychological expertise. When a mental health clinician is not available for direct clinical involvement, another team member may do the evaluation and then seek consultation about the family’s status, risk, and needs.

A bereavement assessment ⁶¹ is often done over several sessions, beginning in some instances in the immediate aftermath of the child’s death, and then followed up over weeks or months. The clinician must carefully monitor the pace of the assessment, both within meetings and in scheduling subsequent times, always based on the family’s cues. “Plowing through” an interview for the sake of completing the assessment frequently results in distress and the loss of important information (Box 5-2).

BOX 5-2 Fundamentals of Bereavement Assessment *

• Allow for time, without interruption, to speak with the family in a manner that conveys your complete attentiveness

• Provide a comfortable and confidential physical setting, with items such as tissues and water available. If children are included, set out toys, books, and drawing or writing materials

• Welcome the family, express your condolences, and acknowledge the enormity of their loss

• Refer to the deceased child by name. Be open to looking at photographs of the child if the family offers them. Use clinical judgment about initiating a request to see pictures

• Approach the family in an open and nonjudgmental manner to facilitate trust and reduce any sense of intimidation

• Pose questions in a way that reflects the family’s cognitive, developmental, and educational levels and cultural background

• Always ask, never assume

• Before focusing on the child’s illness and death, allow time for the family to describe and reminisce about the child

• Invite families to tell the story of their child in their own way and at their own pace. It is common for bereaved individuals to repeat details of the illness and death numerous times as they move through the grief experience

• Pace the assessment. Avoid overwhelming the family; use clinical judgment as to whether it is time to take a break or end the session. Plowing through an interview for the sake of completing the assessment frequently results in unnecessary distress and the loss of important information

• Let the family express their feelings and opinions, whether or not you agree. Refrain from interrupting or trying to fill silences

• Verify your impressions with the family. When necessary, ask explicitly if your understanding is accurate. If you make a mistake or misunderstand something, apologize and continue. Families tend to be very forgiving

• If red flags emerge in the assessment, consult with a mental health clinician

• Bereavement interviews elicit the expression of intense emotions. Closely monitor your own reactions during and after the session. Just as all families are different, each clinician brings his or her background and vulnerabilities to the setting

^* Although only the word family is used in the box, these points apply to individual assessment as well.

In the immediate aftermath of the child’s death, it is important to assess each family member’s response and determine what is needed to carry the family through the crisis, including referrals for medical or mental health issues. Initial discussions often include their wishes for a funeral and/or memorial service and burial and, in some instances, the clarification of logistical issues around transporting the body. If the family has not made advance arrangements, they often need assistance in sorting through their options. This initial assessment also may include sensitive inquiry into the family’s financial resources and identification of people who can help them in the days and weeks ahead. Questions about the course of the child’s illness and death, or unresolved issues with the medical team, can usually wait until after the service has taken place. Other major areas of bereavement assessment include developmental level of the individual and the family; family composition, relationships, and background; significant medical issues; psychological history, particularly coping with past losses or trauma; ethnicity, culture, and spiritual beliefs; available support within the family and community; and access to professional services. A “loss history” encompasses loss in its broadest sense;⁵⁶ for example, through illness and death, trauma, change in relationships (e.g., divorce); loss of employment and/or financial security; geographical moves. A critical dimension of the loss history includes the experience of immigrant or refugee families: in addition to the loss of their home country, many have suffered unspeakable trauma in their journey to their new home. Given the extreme sensitivity of these issues, which may include fear of legal repercussions if disclosed, utmost care must be exercised in any inquiry.

The heart of the bereavement assessment is the family’s experience of the child’s illness and death. In broaching this segment of the interview, the family should be invited first to describe and reminisce about their child. Hearing the family’s story as they choose to recount it is essential, both for its content and for how it is told. The following issues, both the facts and the accompanying emotions, are important to listen for or elicit as the family relates their experience.

• How was information about your child communicated to you?

• How did you and the staff share information with your child? What did he or she know or understand?

• Did you and your child participate in decisions about treatment?

• Was there any staff member with whom you felt especially comfortable or uncomfortable?

• When and how did you realize, or when and how were you told, that your child was going to die?

• Were you given information about home and hospice options and comfort measures for your child?

• Were you prepared for what to expect at the time of death?

• Did the child seem to be suffering before he or she died? If so, how?

• Was your family alone with your child before his or her death? Was everyone there that you wanted to be present? Did you have the support you needed from staff?

“Red flags” in the family that may indicate a predisposition to a particularly complicated bereavement period include a history of multiple losses or trauma, psychiatric disturbance (especially suicidal ideas or behavior), and addictions. Family relationships that were already fragile or stressed before the child’s death are at risk for further deterioration. If the individual or family has an existing relationship with a mental health clinician, the team may seek permission to contact that individual to ensure timely follow up. For others, it is crucial to have an emergency plan, including access to immediate psychiatric assessment at the child’s death. The importance of helping a family to create a “safety net” of extended family and friends before the child’s death cannot be overestimated.

An underlying premise of the assessment process is “always ask, never assume.” Assumptions about behavior based upon gender, ethnic or cultural background, age or even the type of loss suffered must be evaluated against the information provided by the individual. Furthermore, while the assessment marks a starting point for working with a bereaved family, the process of evaluation continues. Periodic checking in with the family provides ongoing supportive contact as well as a lens for monitoring changes in emotion or behavior that might otherwise be missed. For example, a parent may go through periods of seeming “almost normal,” only to be followed by incapacitating grief when he or she is unable to leave the house or even get out of bed. Another example may be a sibling who appears to be functioning well who is suddenly stricken with nightmares, becomes inconsolable and fearful, and withdraws from friends and activities.

Exploring a family’s ethnic and cultural background—and degree of acculturation in immigrant families—is essential for assessment and formulation of an optimal bereavement care plan. Family members may vary considerably in their attachments to beliefs and customs from their home country; as a consequence, individual beliefs and needs can be quite different. Critical issues include:

• What are the family’s beliefs and values related to childhood illness and death?

• Is it considered appropriate to talk about death with, or around, children?

• What are their expectations of medical care and their own involvement?

• What are the unique and expected roles of family members and the community?

• Are different levels of acculturation causing friction among family members?

Through sensitive and thorough inquiry, important information can be gleaned to frame the family’s psychological responses within the context of their own cultural background. The clinician’s effort to understand these factors promotes respect and candor within the therapeutic relationship (Box 5-3).

BOX 5-3 Bereavement Assessment: Topics to Address

In the Immediate Aftermath of a Child’s Death

• Reactions of each individual in the family

• What the family needs to carry them through the immediate crisis, including referrals

• Funeral planning and arrangements

• Available supports, both emotional and financial

The Child’s Illness and Death

• Course of the illness beginning at diagnosis

• How the medical team communicated information about the child

• The child’s knowledge and understanding of his or her situation

• Child’s and family’s participation in decision making about treatment

• Relationship with members of the team; any individual with whom the family was especially comfortable or uncomfortable

• How and when the family realized that the child was going to die

• Adequacy of information about home and hospice options and comfort measures for the child

• Preparation for what to expect at the time of death

• The child’s death: description of the death and child’s level of suffering, time for family to be alone with the child, staff support of the family

• Any unresolved issues with the medical team that the family wishes to address

Red Flags

• History of multiple losses or trauma

• Psychiatric disturbance, especially suicidal ideas or behavior

• Alcohol or substance abuse

• Fragile or stressed family relationships

• Extremes of emotion that persist over time, or the suppression of any sign of feeling

Intervention

Universally accepted standards for bereavement follow-up do not yet exist in pediatric palliative care. In their absence, the role of individual and family assessment is paramount in providing optimal clinical care, as well as in developing effective protocols that can be empirically tested. The ongoing assessment and/or reassessment process guides the clinician as to what type of intervention would be most valuable at a given time (Fig. 5-5). To achieve the best “fit,” a referral must be based on astute clinical judgment in combination with the unique needs and wishes of the individual or family. It is not uncommon for these needs to fluctuate over time, and thus a variety of support and treatment modalities may be accessed concurrently or sequentially in the bereavement process. Many families turn to their community for support. For example, a deeply religious family may find solace through their spiritual organization. Others turn to self-help bereavement groups at local agencies that rely on volunteers and trained peer counselors. Some people choose more intensive intervention in the form of individual, marital, or family psychotherapy to examine the enduring impact of the child’s illness and death on their lives.

Fig. 5-5 Assessment/intervention triangles.

Psychotherapy can be critical for those individuals or families who have pre-existing or current vulnerabilities in addition to, or inextricable with, the child’s death. While there is much debate about the precise characterization of “pathological grief,” inextricable with features include extremes of emotion in both adults and children that persist over time, such as consuming rage that envelops the individual and alienates the family, or the total suppression of any sign of feeling. Psychotherapy permits the unfolding of the grief process within a well-contained and safe context. It can play a pivotal role in rebuilding, strengthening and sustaining the individual’s and family’s resources as they move forward into the future.

The exigencies of bereavement demand that mental health clinicians have a solid base in psychopathology, evaluation, and psychotherapy. In addition, for those who work with bereaved siblings, knowledge of child development and psychotherapy is critical. Without a broad foundation, clinicians lack a context in which to place the intense issues of bereavement, and their ability to intervene effectively may be severely compromised.

Working with families through death and bereavement can be treacherous ground for inexperienced or unsupported clinicians from any discipline. Throughout the process, it is critical that clinicians keep constant check on their own reactions and expressed beliefs and withhold judgment about the way a family grieves. Consultation with a colleague from a mental health discipline can be valuable in maintaining perspective when working with families in crisis. Furthermore, while many families feel honored and moved at witnessing professionals’ grief for their child, this compassion must be demonstrated without taking over and superseding the family’s own intensity. Clinicians can judge the appropriateness of their involvement in response to the question: “Whose needs are being served?” The answer is unequivocally, “The family’s.”⁵⁶ This balanced perspective is an absolute of effective bereavement intervention.

The effect of a child’s death expands in waves from the family to the broader community, including the child’s school and extra-curricular activities, neighborhood, work site, and religious community. These organizations are deeply affected by the child’s death and often need guidance to cope with their collective grief. Although palliative care clinicians cannot be expected to meet all of these needs, they can play a key role in identifying them and suggesting avenues for care.

Spiritual dimensions

“I was brought up to believe that life is a gift. God gives life as a gift with no strings attached. It should be a given, just to live. Then if you want to work to be different things, you work for that. But you shouldn’t have to struggle just to live.”

—Adolescent 62 p. 265

The experience of a child’s illness and death challenges one’s understanding of God’s presence and power. It is difficult to one’s understand the meaning of a young person’s suffering. As part of the “meaning-making” process, it forces many to reconsider what they believe or to believe in something greater than themselves. As the Rev. Carl Howie wrote, “Faith, though subjective, engenders hope and provides meaning for life.”⁶³ To foster such belief requires active listening as individuals describe and define their faith or values, and explore the ways in which their faith can support possibilities and hopes. The process of spiritual assessment and reassessment is ongoing for many children and their families throughout the illness, and afterward.

As spiritual care is provided, the task is to offer emotional and spiritual support to persons of many faiths, cultures, and practices without absolutes but within perimeters.⁶⁴ For example, some people find more comfort within their own tradition, while others may seek or accept prayer, or supportive listening from persons outside of their own tradition. An important aspect of spiritual assessment is exploring with children and the family which spiritual needs can be met by a newcomer, and which are better met by a known spiritual caregiver. A mitigating factor is often geographical distance, in that the primary spiritual and religious supports may be unavailable for many families. Having to make new spiritual connections is another of the adjustments and losses that accompany the new normal of having an ill child.

Mark, a 12-year-old Catholic adolescent, was newly confirmed, and communion represented that rite of passage to him. Receiving daily communion was a resource for his faith and his sense of self. It provided a way to incarnate his faith, as well as his passage into young adulthood, even as he was hospitalized and losing his independence in many domains. Although the chaplain was not a Catholic, both Mark and his mother were open to and grateful for receiving communion from her. In fact, this ritual became the centerpiece of his spiritual care and conversations during his five-month hospitalization. When Mark died, the family requested that this Protestant chaplain offer the eulogy at his funeral Mass.

A Muslim boy had a life-threatening kidney disease and without a transplant would require ongoing dialysis, with all its risks and complications. The mother was a match for transplant and said that she would do anything to avoid losing her son. Her husband expressed fear at losing both his ill son and his wife, the mother of his children. The father requested that the chaplain, who was not a practitioner of Islam, pray for his family. The fact that the chaplain represented faith was sufficient for the family to make her part of their hopes and fears.

Although notions of retributive justice are rarely taught, people of many faiths try to link a person’s illness to the actions of the child, parent, or another significant individual. With some children, this link can be almost magical or mythical in nature, as their minds struggle to understand what is happening. In addition, sacred stories in many cultures and traditions connect the acts of one generation to the next. As children and their families seek to make sense of the suffering and illness, such intergenerational lore can be particularly poignant. The search for meaning becomes primary, regardless of the context selected for explanation. If the spiritual or religious tradition focuses on punishment, the child’s illness becomes the ultimate punishment. Consequently, there is enormous guilt wrapped into the anticipatory grief process from the beginning. In the words of one mother, “What if I put him through all this – and he still dies?” The role of the chaplain is to help individuals describe and work through their fear of retribution from a theological perspective.

In most spiritual practices, prayer is a demonstration of faithfulness. In some of these traditions, the belief is that prayers are answered if they are asked properly and with faith. When prayers go unanswered, and children become sicker, the notion of punishment looms large for the family. Doubt about both God’s and human faithfulness can be a painful part of unanswered prayers and unfulfilled hopes.

A sixteen-year-old boy explained that he no longer prayed because God did not listen to him, but if the chaplain prayed for him, God might hear his prayers. This disclosure led to a series of conversations about how to know whether God listens or hears.

The frustration of unanswered prayers in combination with the loss of hopes and dreams for a child intersect sadly. A mother who grieved that her daughter would never grow into a woman; a father who grieved that his son would never learn to ride a bicycle; a sibling who hoped that his brother would be his best man one day; a child who wished she could live to have her first kiss: each of these was expressed in the context of having prayed for healing.

Cecilia, a 7-year-old girl, asked her mother over several nights if she could see the angel outside her hospital window. Though the mother could not see anything, she explained that the angel must be Cecilia’s and that was why she alone could see her. A few days later, when Cecilia died, her mother believed that this angel had come to take her to heaven. In her tradition, children have guardian angels, and this belief comforted her from the time of Cecilia’s diagnosis through her death.

The grief of the children who are ill has its own immediacy.⁶⁵^–⁶⁷ Being in the hospital for an extended period separates them from the family and friends they love—at home, school and in other activities, the neighborhood and their faith community. The children often address their longing for these interrupted, if not suspended, relationships. Awareness of the siblings’ needs is also paramount.

An older brother of an eight-year-old child with mitochondrial disorder was able, because of the bedside nurse’s advocacy, to be present when her ventilatory support was removed. He reassured his sister with the words: “Everything will be OK.”

Although the chaplain was not present, the nurse sought her out afterward, along with other staff members, to share the experience. The team had cared for this child since she was six months old. Over the years, the family had repeatedly said to the chaplain “We are not religious, but please keep her in your prayers.” They invited the chaplain to preside over the family’s memorial service for her, as well as a remembrance ceremony at the hospital.

A chaplain’s involvement with a family during the illness can lead to a continuing relationship beyond the child’s death, even for years and decades. For many families, birthdays, holidays, other important events and the date of death are all reminders of the loss of their hopes for the child who died.

In our interfaith chapel in the hospital, there is a book in which family members can write their own prayers. On numerous occasions, someone who has written a prayer returns months and years later to find the entry. Their inscribed prayer is an enduring way to honor and remember the child.

Siblings’ Experiences

When we first went to the psychologist, my little brother thought she was a checkup doctor. But I explained to him “You know how we lost our older sister? This doctor tries to get the sadness out of your heart.”

—7-year-old child

Bereaved children face inordinate psychological challenges that test their resilience to the utmost.⁶⁸ At home, there are two central issues during the acute bereavement period. First is the question of the siblings’ attendance at the funeral. If the parents discuss the issue with the siblings, they can usually make a decision based upon the child’s direct and indirect cues. Ideally, an adult who is close to the child (other than a parent) can keep a close eye on the child during the service, and take the child out or leave early if necessary. No child should ever be forced to attend. Secondly, while it is important to talk about the deceased child, the here-and-now life focus of the well siblings must not be forgotten in the intensity of immediate grief. This is a critical period to ensure the prevention of insidious comparisons with the idealized deceased child, or the beginning of a replacement child process.⁴⁶

With the death of the patient, the siblings suffer multiple losses: their brother or sister, and then all the roles that were inherent in the relationship.⁴⁶^–⁵¹ Siblings must negotiate this permanent loss while feeling the temporary, although often prolonged, psychological loss or distance of their parents who are immersed in their own grief. Siblings struggle with issues, including overwhelming sadness, that are strikingly similar to those faced by bereaved adults.⁶⁸ Children often report previous losses; thus a “loss history” is crucial in understanding their strengths and vulnerabilities. Young children’s past experience with death, if any, is typically the loss of a grandparent or a pet. They may also talk about objects that they have lost, especially if they are associated with their brother or sister. Children report traumatic memories and fears for the future. Frightening images tend to focus on the illness itself, such as how the person looked, visible symptoms, medical technology, or on the funeral or burial. Worries include: the threat of other losses; loss of a specific aspect of the sibling relationship; religious concerns; harm befalling the child himself or herself; contagion and familial risk of illness; sleep and somatic disorders; and school difficulties. Adolescents often mention sadness about the future (e.g., my brother or sister will never know my children). Anger at the injustice of the loss, as well as at the pain that they must now suffer, takes on many shapes: verbal outbursts; physical aggression and other forms of acting out; and somewhat paradoxically, in withdrawal from others, especially the family.

One of the most painful—and common—aspects of bereavement is a child’s sense of guilt. The guilt may focus on an act, word, or thought that was committed or omitted, real or imagined, rational or irrational. Whatever the source, its existence may sharply exacerbate the loss and carry with it a weight of depression that complicates grief resolution. The frequent and intense intrusion of traumatic thoughts, or an unrelenting sense of guilt, often signals the need for psychological treatment. Children also grapple with the fact that their loss reverberates throughout the social environment, often bearing a combination of both positive and negative consequences, such as the outpouring of support vs. stigmatization.

Staff: cycles of attachment and loss

”One runs the risk of weeping a little, if one lets himself be tamed.”

—Saint Exupery: The Little Prince ⁶⁹

Clinicians who work with these children and families experience repeated cycles of attachment and loss. They must cope with the cumulative impact of loss over time and find a way to balance their suffering and grief with their ongoing commitment to the work.⁷⁰^–⁷⁴ (See Chapter 18.) A pediatric hospice nurse described her experience as artwork (Fig. 5-6).

Fig. 5-6 As children I work with go, I know that I will go, too….

I always feel challenged (green) in the work—it surrounds everything and keeps my commitment going. Commitment (purple) is the core and affects all the other feelings. Feeling hopeful (yellow) and in control (orange) are important if you are going to keep doing this work. Anger (red) is the only feeling that doesn’t touch on commitment in my drawing—so that it does not impinge on it. I have the anger embedded in control. Frustration is there (brown)—you always wish you could do more. And fear (black) …. Hospice forces me to confront and come to terms with death. As children I work with go, I know that I will go too …. Sadness (blue) is there, but it does not take over all my other feelings.

Mental health clinicians and chaplains can play an important role in supporting staff members in preparation for the loss of a child and then in bereavement.

In the words of a hospital chaplain, “I’ve had Jewish and Hindu doctors, Catholic and Muslim nurses, Protestant and secular social workers, Christian and non-believing child life specialists, Buddhist and Bahai respiratory therapists (and almost every other combination of belief and profession within the interdisciplinary team!) seek spiritual support for themselves—not only for the children and families they care for.”

A particularly poignant occurrence is when staff members are confronting loss simultaneously in both their personal and professional lives. To remain open and empathic with the children and families while immersed in one’s own deep grief is an almost indescribable challenge. Frequent check-ins with the mental health clinician or chaplain on the team can be crucial to the individual’s balance and self-preservation in the work. A referral for psychotherapy may also be indicated.

Memorial services to commemorate the children who have died are also a tribute to the staff members who cared for them. These events can be a time both for grieving and for the renewal of professional commitment.

“It is my pleasure to help out and to meet these families again. The spirit of this gathering is so beautiful, and I love to feel shaken by emotions and let the emotions overwhelm me, instead of restraining them as we need to when working in the hospital.”

—Social Worker

Clinical Vignettes

The following vignettes, along with their clinical implications, illustrate some of the key themes that emerge in assessment and intervention with bereaved families.

Michael’S family

Michael died of a brain tumor at the age of 15. He, his parents and younger brother, Andrew, 12, had lived with the uncertainty of his prognosis through several years of intensive treatment. Andrew had spent a great deal of time with Michael during his last months. During particularly difficult periods, Andrew would retreat to a computer fantasy game that featured castles and knights slaying dragons. His maternal grandmother had been very involved with the family, and particularly with Michael, in the last year of his life. Michael’s best friend throughout childhood was at his side daily over the last several weeks of his life. Present at the time of Michael’s death were all of the members of his family, his best friend, the hospice nurse, and the oncology social worker. Although the local hospice team had taken over most of Michael’s care at home in his last two months, the hospital social worker as well as the nurse practitioner from the palliative care team had visited often.

Michael’s father was born in the United States; his mother had emigrated from England as a teenager. After Michael’s death, his parents found themselves at odds in their styles of grieving. Coming from a traditional British upbringing, Michael’s mother was uncomfortable with the public expression of strong emotion. She tended to keep her feelings to herself and spent much of her time in a garden creating a special memorial area. Michael’s father found it helpful to share his deep sadness with family and friends. When he would try to engage his wife in conversation about Michael, she listened attentively but usually remained quiet and composed. Andrew was talkative and often tearful when alone with the social worker, but around his parents, he was reserved and avoided any discussion of Michael other than happy memories.

The social worker and the hospice bereavement counselor met with the family, including the grandmother, both individually and as a family shortly after Michael’s death. Michael’s father expressed interest in attending a bereaved parents group at a local agency; his mother wanted nothing to do with it. The social worker maintained weekly contact with the family for the first few months and monthly thereafter, for both individual and family therapy sessions. Over time, the family members learned to understand and respect that each had unique needs and paths in bereavement. Andrew was gradually able to share more of his private world with his parents and used writing to express many of the feelings that he had been harboring.

The parents appreciated the ongoing connection to the medical team and the hospital afforded them by the meetings with the social worker. They often asked about Michael’s primary physician and were very grateful when she called. At the suggestion of the social worker, Andrew agreed to meet with the school psychologist whom he had met earlier in the year when he was having difficulty completing his homework. His connection to the psychologist provided a safety net for him at school. The grandmother stated that her role was to “keep a stiff upper lip” and to support her daughter by helping with the household tasks and driving Andrew to his activities. She found solace in her church community.

The nurse practitioner had talked to Michael’s best friend at the funeral. She asked him whether she could call in a few weeks to see how he was doing. He agreed and when they spoke, he told her he could not stop thinking about Michael—especially the day of his death. He agreed to consider joining a teen group at the same agency that Michael’s father attended, but did not want to commit to it yet. When the nurse called him again a week later, the boy had decided against contacting the group. However, he promised to call the nurse if he continued to feel so preoccupied with Michael’s death. A few months later, the high school principal contacted the nurse and asked her to meet with the students to discuss the impact of their peer’s illness and death.

Implications:

• The “family” may include extended family members and significant friends,

• A child’s death affects both the immediate family and wider community,

• Individuals in the same family experience a death differently, and thus a variety of interventions should be considered,

• It is common for family members to feel perplexed and at times distressed about differences in individual styles of coping. The clinician plays an important role in helping to clarify these differences, as well as to point out the commonalities in the grief,

• A single assessment of a family in the bereavement process is not sufficient. Rather, ongoing check-ins, with the family’s agreement, can provide a more accurate picture of the family’s needs, as well a safety net for them,

• Siblings often hide their feelings from parents to avoid causing them additional pain,

• Continuity with the care team after the death helps lessen feelings of abandonment and loss of the “hospital family.”

Andrea’S family

Andrea was born with multiple congenital anomalies to Mexican-American parents. She was the youngest of five children (ages 12, 8, 6, 5); all but the oldest were born in the United States. Both parents spoke only spanish. When Andrea was born, the mother left her job to spend most of her time at the hospital. The father worked as a dishwasher in a local restaurant and took on extra shifts to compensate for the loss of income. The children’s aunt arrived from Mexico, where the entire extended family still lived, to help care for the other children. Without the mother’s income, the family experienced extreme financial hardship, including the loss of electric and water service because of their inability to pay the bills. The social worker from the palliative care team met the mother during Andrea’s admissions, and followed up with family therapy sessions in their home after her death.

The children rarely saw Andrea during her months-long stay in the neonatal intensive care unit. The hospital was more than two hours away from the family’s home; they did not own a car and public transportation was extremely limited in their rural community. The children were given little information about the severity of Andrea’s condition. The aunt would respond to any questions by saying that Andrea was “in God’s hands and only He knows what her fate would be.” The mother explained that neither the parents nor the aunt talked to any of the children about the severity of Andrea’s condition because they feared it would scare them. When Andrea was discharged home for about two months, José, the 8-year-old, was especially involved with her. He said, “I helped take care of her and I made her smile and hugged her.”

Andrea was readmitted to the hospital at six months of age and died there three weeks later. All the children were shocked because neither their parents nor their aunt had talked about the possibility of death. They all attended their sister’s funeral; José commented that it was “scary” because he didn’t know that his sister would feel so cold and be so still when he touched her. He visited the cemetery often, both with the family and on his own. The family spoke openly of Andrea, but not of her death. As part of their tradition, the family created an altar made up of her special belongings, pictures and religious symbols on a shelf in the main room of the house. Every morning before school, José would speak to Andrea’s picture, sharing his thoughts about the day ahead. “I always tell her goodbye and that I loved her.” He said Andrea was like an angel who watched over him all the time. Although tearful when telling the story of his sister to the social worker, he also said he felt happy to talk about her. Prior to this conversation, he had not told the story of Andrea to anyone, not even his closest friends.

According to the mother, the oldest son, age 12, was extremely quiet and stoic. During the social worker’s visits, he would stand in the doorway listening attentively to the conversation, at times tearful, but never joining in. Clearly he took the lead from his father, who was deeply sad, but reluctant to talk about his feelings. Such stoicism is a highly valued trait in Mexican culture, especially in men, and is perceived as a way to protect others from added pain. In the first few months after Andrea’s death, the marital relationship was somewhat strained. Although the mother understood her husband’s emotional stance, she longed for more sharing in their grief. As a result of several family therapy meetings, he began to be more open. The two youngest children, both girls, were eager to be part of every meeting, and frequently added their own comments while drawing pictures of their baby sister.

In the months following Andrea’s death, the aunt, who stayed on with the family, expressed surprise and concern about how little community support was offered. She stated that friends and neighbors would have been much more involved in Mexico. In particular, the children were somewhat “invisible” in the turmoil after Andrea’s death. Because their visits to the hospital had been infrequent, the siblings had never met with anyone from child life, social work, or psychology/psychiatry. The palliative care social worker referred José to a local support agency, but he did not want to go, saying that he did not want to talk with a stranger and that he just needed to be strong. However, when the mother reported feeling severely depressed months after the baby’s death, she followed up a referral to a local agency for individual therapy, recommended both by the Spanish-speaking chaplain who called regularly and the social worker, and found it helpful.

Implications:

• The parents’ and aunt’s reticence to disclose the dire nature of Andrea’s condition reflected a strong cultural value about protecting children from talk of death. Clinicians must be aware of and respect this belief, while also gently offering ideas about more open sharing with their children,

• José’s mother believed that it was important for her children to be involved in the funeral and to visit the cemetery. In contrast to the prohibition about discussing death ahead of time, children of all ages partake in these rituals in her culture. It is important to understand these customs as bereavement interventions in the family’s natural setting,

• The altar represents one culture’s tradition of maintaining ties with the deceased. It is therapeutic and respectful for clinicians to inquire about such traditions; often the question opens discussion about the family’s bereavement process in general,

• Certain traits, such as stoicism, represent both individual psychology and cultural forces and must be understood within both contexts,

• José, as the most expressive child, illustrates some of the unique experiences of a bereaved sibling attempting to cope with his loss. The death of his baby sister was clearly an ongoing thread in his life that he wrestled with daily. José’s focus on the sensory perception of Andrea’s body “feeling cold” at the funeral is a typical response of children and is often a graphic illustration of their fear. His altar conversations with Andrea were a way for him to maintain an ongoing connection with her. Such avenues are crucial for bereaved children as well as adults,

• Had the family lived in Mexico during their time of hardship, the community would have been much more involved. In the absence of such support, particularly for immigrant families, the palliative care team must be proactive in helping families find and connect with support through local resources. Simply offering the name of an individual or an agency is often inadequate; the family may need help in making the contact, or even be accompanied for an initial visit,

• Siblings are often invisible to the team at the hospital, even more so when language, culture, and distance are factors. For truly comprehensive family-centered palliative care, the siblings’ needs must be recognized and addressed by the clinical team, both during the illness and in bereavement.

Frank, 4, sibling of katy, 8 ⁴⁶

When Frank was told of Katy’s death from leukemia (see earlier section about Katy under Anticipatory Grief), he immediately said he wished he had had the chance to say goodbye. Over the next few days he asked many questions: Why was Katy dead, what does dead mean, what does she look like now? The parents told him that although Katy could no longer talk to him, he could still tell her things if it would make him feel better. During the first month after Katy’s death, Frank asked to go to the cemetery several times. At the grave he would pose questions to Katy through his mother, such as: “Ask Katy if she really loved me.” He would recount anecdotes to Katy about his daily life. When the family dog was found after being lost for a day, Frank insisted on going to the cemetery with the dog so that Katy would know about his return. At school, Frank attached himself to a little girl in his class, and would panic on days that she was absent. About a month after Katy’s death, while Frank was in the bathtub, he suddenly burst into sobs about how much he missed taking a bath with Katy. Bath time continued to be difficult for about six months, after which it became a time for happy memories. Almost a year later, Frank still woke up some mornings saying that he felt sad because he missed Katy.

Implications:

• Even very young children can grasp the absolute finality of death. Frank alternates between conventional verbal reminiscence and the more concrete working through of grief,

• Intellectual questions about death are children’s attempts to cognitively master a highly abstract concept,

• Through his “talking to Katy,” Frank came to understand that his relationship with her continued even though she was no longer alive. The parents’ initiation and support of these conversations was pivotal in Frank’s grieving and solace,

• Frank’s immediate attachment to the girl at school represents the concrete attempts at replacement so often seen in young children, along with their heightened sensitivity to the threat of loss,

• Frank’s reminiscences at bath time are similar to adult grieving, when memories are stirred up by activities once shared,

• Frank’s expressed sadness on waking some mornings is a spontaneous form of grieving, in no way induced by adult probing.

Bobby, 10, and joanne, 17, siblings of cindy, 14 ⁴⁶

After the death of Cindy at age 14 of osteosarcoma, her two siblings were followed in psychotherapy for several months. During Cindy’s illness, Bobby had expressed much fear of his leg being amputated (see Figs. 3-7 and 3-8). His identification with her physical illness and suffering continued into bereavement. When asked how he was feeling, Bobby responded, “I feel like a bug is just eating me up.” He then drew a picture of a bald boy with bugs “in the leg and chest only”—the sites of his sister’s cancer (Fig. 5-7). Even more significant was the fact that his asthma, previously mild, became quite severe during this period.

Fig. 5-7 How Bobby feels after Cindy’s death.

(Reprinted with permission from Kellerman, J. Psychological Aspects of Childhood Cancer. (1980). Courtesy of Charles C. Thomas, Publisher, Ltd. Springfield, Illinois.)

In Joanne’s sessions with the psychologist, she reviewed the process of Cindy’s illness and death(see Chapter 3, p. 22) and reminisced about their relationship. She initially expressed a great deal of guilt about not being able to protect her younger sister, as well as regret for some of her past actions and thoughts. “I feel so selfish. I always used to tell Cindy that I wanted my own room. And now I have it—two twin beds—and I am so lonely.” Over the next few months, Joanne did a school project on the cancer center, with the following prologue: “This project is dedicated to my beloved little sister Cindy. At the age of fourteen, my little sister and closest friend departed… Because of my very personal involvement, I chose the cancer institute as my assignment for Urban Studies.”

Implications:

• Somatic reactions are common indices of distress in bereaved siblings. Particular attention must be paid to symptoms that in some way mirror the illness of the child who died. These symptoms tend to be more resistant to abating on their own, and may require more intensive psychological—as well as medical—treatment,

• Adolescents’ grief often closely resembles that of adults, often with a strong need to commemorate their sibling.