17 - Symptoms in life-threatening illness - Overview and assessment
Editors: Goldman, Ann; Hain, Richard; Liben, Stephen
Title: Oxford Textbook of Palliative Care for Children, 1st Edition
Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)
> Table of Contents > Section 2 - Child and family care > 15 - Bereavement
15
Bereavement
Betty Davies
Thomas Attig
Michael Towne
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Introduction
Case A Chinese-American father sits in a pediatric Intensive care unit (ICU) outside his child's room. He grieves for both his 2 week-old son who will probably die over the weekend of a congenital heart defect and another son who died of sudden infant death syndrome (SIDS) 10 years previously. Chinese New Year is the approaching Saturday. Three previous attempts have failed to remove the son from life support. The medical team and parents have discussed whether one final attempt should be made. The parents, neither a practising Buddhist, request that any attempt should take place after the holiday. This is for the sake of the maternal grandmother, a practising Buddhist, and because their culture and community believe that how one spends the New Year predicts the family's fortune for the rest of the year.
Though medical science has contributed much to the treatment of children with life-threatening conditions, children still die. In modern medical culture we define the death of a child as a tragedy. A family is profoundly affected by this experience prior to an anticipated death, at the time of the death, and many years thereafter. The father from the story above is preparing himself for the death of his fourth son while actively grieving again the earlier death of his second son. While the parents exercise their legal rights to make decisions about their baby's health, they do not do so in a familial or cultural vacuum. The extended family, family friends, and the community within which this family lives are all affected. One can easily imagine the import of a baby dying on Chinese New Year discussed by the members of this family's Chinese-American community.
Among those affected are the staff of the ICU who witness and support the family's reactions and responses to what is happening. The experience of bearing witness to the dying of a child has its impact, even though many staff may purport to the contrary. The impact is reflected in the exacting and impassioned efforts to save a child's life when possible, in the dark humor outside of the earshot of families, and in the emotional aftermath when team efforts are unsuccessful. Identification with the situation in a personal way happens, and for some that process may not be at easily accessible conscious levels. The communities that feel the effects of a death are multiple, including the family, the family's community, and the family's and the child's caretakers during the dying process.
While this father and mother are at the deathbed of their fourth son, they are struggling to support their 15- and 8 year-old sons. These well children, guided by their parents, peers, extended family and teachers, will make a psycho-social transition through this second difficult time in their family's experience. The father describes lessons learned from the first death, even though it was not anticipated and therefore quite different. His family went through a significant restructuring 10 years ago and will do so again. From his words one can also hear, and the literature supports, that the child who died of SIDS 10 years earlier still has his place in the family. Though they may change over time, feelings and connections never go away.
The development of modern medical technology has resulted in a shift in expectations of infant and child mortality in countries where such technology is widely available. In a society that expects children to live beyond childhood, the expectations themselves become integrated into the grieving process. Grieving parents often speak of having joined a club of which they did not want to become a member, given that the entr e is their child's death.
From infancy, humans learn to cope with loss. It is factored into our existence from early days of separation anxiety through adolescent individuation and on to young adulthood when we leave childhood behind. With each successive stage of maturation, we experience loss and progress, and so we grieve and rejoice. Furthermore, since all of us are living, we must all face death. The hoped-for pattern is that we learn lessons through earlier experiences of death that will help us contend with difficult deaths in later life. The death of a child, though, sits outside of that hoped-for pattern.
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Contextual variables in bereavement and grieving
Each person's experience of loss and grieving is dependent upon a variety of factors, including both situational factors, individual and environmental factors [1]. These variables provide the context within which each grieves in his or her own way.
Circumstances of the child's death
The most immediate context is the history of the child's dying and death. Often a dying child and family members have already experienced many secondary losses through a relatively long course of living with a terminal illness. Such losses include having a normal child, dreams and expectations for their family and their future together, lifestyle due to the disruptions of caring for an ill child, financial setbacks and hardships, social relationships, their sense of comfort and security in the world, mobility and the capacity to do things that normal families do. They may then come to the death of the child in an already vulnerable position.
Ideally, in an anticipated death, the location (home, hospital, or hospice) of a child's death will have been based upon the family's specific needs and requests. Sometimes, even though the family and the healthcare team know their ideal location, it may not be achieved, for a variety of reasons (insurance issues, nursing shortages, and transportation problems).
A parent may have had to face decisions around the time of death about such things as experimental treatment, resuscitation status, or removal from life support. Or the decision may have been dictated more by the child's disease. Some families must contend with suspicions that either negligence or iatro-genesis contributed to the death. Others may believe (rightly or wrongly) that they bear some responsibility for the death, for example, in cases of accident or genetic illness or when it may be easier to blame themselves than to face total loss of control. Families carry within them images, sounds, and smells from the healthcare setting, including memories of pain or other distressing symptoms.
A child's life may have ended after full resuscitation or a gradual, peaceful slipping into an unconscious state. He or she may have died after years of treatment or very suddenly and unexpectedly. Extended periods of caregiving may leave family members numbed and with little energy for grieving. In contrast a shorter dying trajectory often leaves families less time to prepare and to create support systems for the deep sorrow and disorientation of their bereavement.
Personal history with bereavement
Some of those who grieve have had little or no previous history with bereavement. For a grieving child, perhaps no one close to them has died till now, or perhaps parents have tried with some success to protect him or her from harsh realities. For some adults the death of a child may also be their first experience of a major loss and even a first exposure to medical institutions and technologies. Others will have experienced a major loss before and then often aspects of those earlier deaths, including the memories and feelings (distressing or pleasant) will replay themselves when the grievers confront their new losses. In some cases, grievers may still be actively engaged in intense grieving over a prior loss when this new loss looms or has occurred. Those with experience of grief may bring learned patterns of grieving from the past to bear in coming to terms with a current loss and such lessons may or may not serve them in their current situation; for example, the father at the beginning of this chapter whose pessimism about his child's surviving is a means of coping derived from the earlier death of another son.
History and relationship with the child
Each parent, sibling, or grandparent has had a unique history and relationship with the deceased child. The older the child, the more complex and varied will have been the interweaving of the life of the child into the pattern of the daily lives and the life histories of those who grieve for him or her. When newborns die, family members may struggle with never really having the opportunity to know their child well. Grievers will have found different places in the daily life and growth of the child when he or she was well, joined in diverse experiences and activities, achieved different levels of intimacy with him or her, taken different roles in caring for the ill child, and found different meanings in the life they shared. Some histories will have been predominantly untroubled and others filled with tension and conflict.
Personality of the griever
Temperaments vary widely. Some grievers have high tolerances for change, vulnerability, ambiguity, and uncertainty, and others are more daunted by them. Some more extroverted grievers may be receptive to or seek the benefits of companionship and discussion with others, while more introverted grievers may prefer solitude, meditation, or prayer. Some grievers may focus their attention on the details of present and profoundly changed realities, while others may focus their attention on the future and emerging possibilities. Grievers will differ in their ways of choosing how to reshape and redirect their lives in the aftermath of loss depending upon how they are disposed to value control or spontaneity, and whether they attend to the facts and evaluate options objectively or factor in personal values, assessing how deeply they or others care about the alternatives. Some grievers are action-oriented
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problem-solvers disposed to change the world around them and reshape their daily life patterns deliberately, while others are more inclined to pause to process feelings, make themselves receptive to unanticipated opportunities and allow themselves to be changed by their profound experience.
Social and cultural circumstances
No one grieves in isolation from others. An individual's response to the death of a child is shaped by distinct social and cultural circumstances, and, in turn, each griever plays many roles in shaping responses of the family and the community. Family functioning during bereavement varies widely depending upon how the family communicates, deals with feelings, defines roles, solves problems, utilizes resources, accommodates change, invokes beliefs, and considers others' viewpoints and needs [1, 2, 3]. Friends, extended family, and community support also influence how the family unit and individual family members function and come to terms with loss.
Individuals and families grieve within their broader cultural contexts. Some, like the Chinese-American father at the beginning of this chapter, strongly identify with cultural beliefs and mores. They turn to culture and tradition to find support and comfort in the answers, rituals and ceremonies, behavioral prescriptions, and spiritual practices they provide. Since modern medical care is based on its own culture of bioethics, practices, and language, caregivers need to take care to avoid a clash between a Cartesian belief in the schism between body and soul and cultural views where treating the spirit is to also treat the body [4]. Some grievers, however, do not identify strongly with the beliefs and mores of their cultures of origin, even when other members of their own families may do so. Some may even experience cultural expectations as impositions. While it is useful to know how grieving is typically expressed within a particular cultural group, caregivers must respect the uniqueness of an individual's experiences within this broader context, presuming nothing and exploring with them their personal approach.
Grieving the death of a child
It is not the purpose of this chapter to provide a detailed review of the rich history of theory about the grieving process but rather to acquaint the reader with the major trends that have occurred when responding to those who are grieving the death of a child. Changing theory about grieving finds its way into everyday understandings and expectations of family members and caregivers alike.
Table 15.1 summarizes the major theories and the two major trends in thinking about grieving, and the references to works by leading proponents of the theories provide access to
Table 15.1 History of thinking about grieving | ||||||||||
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major works in the history of grief theory. One trend in that history has been a move away from stage/phase or medical models toward grief work models. The other trend is a move away from the view that grieving requires ending the relationship with the deceased to the view that grieving involves transforming that relationship. The currently preferred theories
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describe the phenomena of grieving more accurately and adequately
encourage respect for the unique suffering and distinctive struggles of the individual griever
respond to griever helplessness by underscoring how grieving is an active response to bereavement
provide more appropriate guidance for caregivers.
Here, we have chosen to offer an understanding of grieving the death of a child that we believe reflects the best of theories of grief work and transforming the relationship with the child.
Grieving as relearning the world
Fundamentally, grieving is a normal, active, choice-filled, evolving response to a choiceless event bereavement, a process that both takes time and requires considerable effort. As grievers address the challenges that bereavement brings into their lives, they implicitly address the passivity and helplessness of bereavement. In describing the work of grieving, Attig [15] urges that grieving is nothing less than a process of relearning the world . Contending with the death of a child shakes the foundations of the survivors' ways of being in the world and will be unique to each person. Relearning the world requires that grievers learn how to be and act in a world transformed by the death of the child. There is no right way or easy formula for relearning the world, only the ways that grievers choose for themselves. Grievers must contend with virtually all elements in their experience, including their physical and social surroundings, aspects of themselves and their relationship with the deceased.
Relearning physical surroundings
Those who grieve the death of a child face physical surroundings that are permeated with reminders of the child who died, including painful reminders of the child's absence and, in some cases, of his or her suffering (a sick bed or room, medical items, etc.) as well as cherished memories. Parents and siblings return to their homes once filled with the child's history (their words, arguments, laughter, and tears) and their personal possessions (clothing, art works mounted on walls or refrigerator doors, photographs, the child's favorite foods and music). Some return to cherished items that the child gave to them while others face items that distress them on discovery, for example, drug paraphernalia. Grandparents and friends who did not share home life with the child may nevertheless find returning to their own home or visiting the child's home challenging because of the distinctive reminders they find there. Many grievers also find that things and places outside of the home that were touched by the life of the child are difficult for them; these may include such things as family automobiles and many features of the neighborhood (e.g. schools, playgrounds, hospitals, particular stores, and vacation spots). Some parents and siblings return to homes with nurseries that the child never occupied, where life with the child was only anticipated.
Relearning social surroundings
Grievers must relearn their social surroundings, life with family members, friends, and others who may or may not have known the child. These social contexts are also permeated with reminders of the child, both painful and positive (such as family resemblances, habits and shared histories). Experiences, activities, and patterns of interaction that comprised family life patterns when the child was an active participant in them cannot be as they were before the child's death. Special occasions and anniversaries, holidays, birthdays, anniversaries of the illness and death, parties, the beginning of the school year, graduations, and family traditions can be especially challenging.
Each parent or sibling is uniquely anguished and vulnerable, in need of comfort and support, challenged by expectations of others, uncertain of appropriate things to say or do or roles to play, caught up in relearning the unique world of his or her experience, and limited in his or her understanding or capacity to help others. Anguish can be compounded as family members witness one another's individual struggles with the child's death and realize the limits of their own abilities to reach out to and support one another. None can grieve in pristine isolation from the others. Desires and choices of one
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family member about how to live with things, within places, with one another, in daily routines, and on new paths into uncharted futures implicate all of the others profoundly and individually. Family members are challenged to find the sensitivity, compassion, tolerance for difference, and skills in cooperation, compromise, and negotiation necessary to recover and sustain smooth family functioning in new family life patterns. Often families struggle with issues of conceiving and welcoming a new child into the family. Grandparents, other members of the extended family, and friends who do not share home life with the immediate family must also contend with new concerns, issues, tensions, and patterns of interaction with members of the immediate family even as they come to terms with their own bereavement.
Parents, siblings, and other grievers may find other social interactions challenging, including encounters with health care professionals, funeral directors, clergy, insurance agents, friends, colleagues at work, schoolmates, persons who knew the child but had not learned of the death, people who innocently ask about the number of one's children or siblings, and anyone who resembles the child in some way. Grievers may feel isolated or alienated from cultural support. Members of immigrant families may have to contend with language or legal complications of their status or with being outside of familiar cultural norms and support systems. A society that is vastly different from that of their origins may not readily support rituals or ways of expressing grief that they learned as children. Others may have to contend with unwelcome cultural pressures and expectations that they do not find supportive or that actually inhibit or interfere with their grieving.
Relearning aspects of the self
Those who grieve the death of a child must relearn their very selves, including their characters, histories, roles in life, commitments, and the identities they find in them. Parents contend with concerns such as the extent to which they are identified with their roles and histories as parents; the quality of their characters as reflected in their parenting, especially at the end of the child's life; what it means to be the mother, father, or stepparent of a dead child; what is to become of them now that their child has died; and their motivations and capacities for parenting other surviving children or children yet to be conceived. Siblings contend with similar concerns about their roles and places in the family; the quality of their characters as reflected in interactions with their dead brother or sister; what it means to be the brother or sister of a dead sibling; what is to become of them; and how the death is likely to affect the ways their parents and siblings care for, value, and respect them as individuals. Some must contend with parents and others who look upon them as replacements for the dead child or expect them to be or become like them in some way. Parents and siblings alike are challenged to relearn their self-confidence and self-esteem. Those who knew and loved the child struggle to change and to fit with the new reality; reassess their commitments to family, work, and other major life projects and commitments; grow in understanding and modify perspectives on the greater scheme of things and their places in it; adapt their faiths and recover a sense of daily purpose, hope, and meaning in life. Family members and friends wonder about how they are different for knowing and loving the dead child and about how, if at all, they can understand or meaningfully embody these aspects of themselves in separation from the child.
Relearning the relationship with the child
Grievers also struggle to relearn and reassess their relationships with the child who died. Parents often experience raising their children as the central business of their lives. No matter what the age of a child who dies, parents can feel as if their experiencing the world with their child and witnessing his or her growth and accomplishments have been cut short. Many of their fondest hopes and aspirations for their child have been dashed. Parents, siblings and others often struggle with words unspoken and deeds not done in interactions with the child, especially words of love and affection and goodbyes. Attig [15] urges that the heart of grieving is making the transition from loving someone when he or she is physically present to loving him or her in separation. Closure is simply a myth: parents, siblings, grandparents, members of the extended family, and friends will always carry some pain over missing the child they loved, and they will never stop loving them. They struggle to learn ways of expressing their abiding love for the child and of feeling that the child's love is still with them. They carry within them memories and stories of the child's life that do not die when the child dies. Remembering itself can be painful as it, too, reminds them of their separation from the child. But memories are also filled with meanings, which can be cherished for a lifetime, and are the principal means of sustaining connection with the child's life. Parents, siblings, and others can feel the child's love for them as through memory they come to recognize how much the child gave them when he or she was alive: influences on their practical lives, including interests and projects that have come to matter to them; influences on their souls, including their ways of caring deeply and loving one another; and influences on their spirits, including their ways of overcoming difficulty, striving to improve lifes, and finding hope, meaning, and joy in life. Parents, siblings, and others can express their love for the dead child through remembering privately, sharing memories, and appreciatively embracing their practical, soulful, and spiritual legacies.
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Relearning their world
Much of the work of grieving is a matter of working towards completing tasks by taking incremental steps in all aspects of the grievers' lives. They relearn and reframe their worlds in piecemeal experiences, not all at once. In this process the work is best understood as a cluster of life-long, open-ended endeavors (again rendering the expectation of closure inappropriate). Grieving families and individuals return to worlds filled with painful reminders of the absence of the dead child and of a life with him or her that is no longer possible. The work of grieving involves coming to terms with the great agony of missing the child and reaching through the pain to affirm the meaning of life in separation from him or her. Family and individual daily lives are in disarray, often following an extended period of illness where familiar routines were disrupted frequently or set aside entirely. The work of grieving involves reshaping tattered lives, weaving together still viable threads from life prior to the death with new threads of activity and caring into inevitably new daily patterns. Family and individual life histories have veered from their expected courses, often through unwelcome chapters of anguish and dislocation while the child suffered and died over an extended period. The work of grieving involves redirecting life stories, carrying forward meanings familiar from past chapters while struggling to find and make new meanings in unanticipated chapters of individual and family narratives [19].
Grievers often experience disconnection from something greater than themselves that gave meaning to their lives, including the vital caring connection with the child, connections within the family or with the wider community, and a sense of belonging and purpose within the greater scheme of things. The work of grieving involves reconnecting in meaningful ways with family and community and seeking meaning and purpose in the greater scheme of things. Grievers must also actively engage with some of the most profound mysteries of life such as death, suffering, loss, the meaning of life, and love. Unlike everyday problems, mysteries are constants that cannot be overcome, managed, controlled, or solved definitively. The work of grieving here does not involve changing the mysteries, but rather changing in response to them.
Suggestions and strategies for helping grieving families
Caregivers in the pediatric palliative care setting can help grievers to understand the basic contours of the grieving process: the challenges before them in bereavement and what relearning how to be and act in a world transformed by the child's death requires.
They can help them to appreciate the value of putting in the effort that grief work requires: helping them to grasp that effectively relearning the world of their experience will ameliorate their distress and anguish (though not eliminate all residual pain of missing the child), return them home to aspects of their lives that still hold meanings familiar to them from life prior to the death, engage them in reshaping and redirecting their lives in meaningful ways, and enable them to continue loving the child in separation. Such understandings can foster self-understanding; allay self-doubts about what is normal in grief; undermine unrealistic expectations of closure such as having to let go entirely of the dead child and elimination of the pain of missing the child; define direction and purpose for grieving; and motivate the griever.
Helping as mentoring
Just as no one can learn for others, caregivers cannot relearn the world for anyone grieving the death of a child. They cannot rescue them from the pain and suffering that loss and transition entail. However caregivers can model their helping on what effective parents, mentors, and teachers do when they acknowledge that they cannot learn for those they are helping and when they help them to become active and self-directed in their learning. Some approaches they can take are:
To comfort grievers, offer their presence, listen to their stories sympathetically and nonjudgmentally, and provide them places of safety and security.
To support them as they reshape their daily lives and redirect their life stories. Caregivers can express confidence in grievers' abilities to face and meet the many challenges before them; refrain from offering pat answers, simple formulas, recipes, and directions; concentrate on helping them to find their own paths; and serve as sounding-boards, active listeners, companions in exploration of options and possibilities and constructive critics.
To reassure grievers that they need not address all of the most difficult challenges at once.
To help them focus their attention selectively, prioritize tasks, and set their own pace in relearning their worlds.
To help mourners recognize and draw upon their strengths in meeting emotional, psychological, behavioral, social, intellectual, and spiritual challenges; recognize and overcome their weaknesses; and learn, and recover from, mistakes.
Helping grievers in all dimensions of their being
Caregivers can support and encourage persons in any or all of the dimensions of their grieving, depending on where help is requested or needed.
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Psychologically. Caregivers can help grievers to cope emotionally as they listen actively, normalize feelings, empathize and comfort, encourage satisfying or meaningful expression, tolerate the expressions, and help to dissipate or constructively redirect the most corrosive feelings, for example, guilt or anger. They can help them with changing personal identities, supporting them as they puzzle over who they are now, return to familiar roles and ways of doing things, and try new roles and unfamiliar ways of doing things. They can help them to recover self-confidence by reassuring them as they either test still viable life patterns or build new ones. They can support self-esteem by showing that their presence is welcome and their contributions are valued.
Behaviorally. Caregivers can encourage and support grievers as they test, and recover confidence in, familiar dispositions, motivations, habits, and behaviors. They can help them recognize when old dispositions, motivations, habits or behaviors lead to frustration or obstruct progress in grieving. Where new patterns of living must be learned, caregivers can help them to identify, gather information about, and evaluate options; choose from among them; enact their choices; and reflect on whether they have chosen well or want to try some other course.
Physically. Caregivers can help grievers to recognize and secure means to meet their physical needs for food, rest and shelter. If exhaustion threatens, professionals can prescribe sedatives when appropriate. Caregivers can also reinforce personal bonds necessary for physical health through presence, touch, comfort, and reassurance of personal worth. And they can encourage others to offer the same rather than making excessive demands, adding to stress, or compounding feelings of isolation or abandonment.
Socially. Caregivers can support grievers as they reconfigure patterns of interaction with and maintain relationships with others. They can help them to overcome excessive self-reliance or pride, and encourage them to ask for support from individuals, support groups, or professionals. Caregivers can help them to balance demands from others for support with their own needs. They can help them anticipate and rehearse difficult conversations or situations; offer to be with them in difficult social circumstances; avoid, deflect, or otherwise effectively deal with insensitive, disrespectful, or destructive actions of others; offer to intercede with others; help them to recognize needs to seek distance from or even to break off relations with others, either temporarily or permanently; and support them if they make such difficult choices. Caregivers can help members of families and communities to recognize how they together face challenges to reshape and redirect family and community life; learn the importance of tolerance of and respect for individual differences; and learn ways to cooperate, negotiate, and compromise effectively. Caregivers can help grievers as they establish new relationships.
Intellectually. Caregivers can help grievers to develop understandings and perspectives on the concrete realities of death and bereavement. They can help them gather, sort, and interpret information about events surrounding the death; learn more about expectable impacts of loss and the challenges grieving persons face; evaluate their own strengths and limits in coping; and identify their own desires and hopes about where coping will lead them.
Spiritually. Caregivers can encourage the bereaved to explore the potential of ritual and ceremony (traditional or otherwise) to help them to contend with sorrow or embrace memories and legacies of the child who died. They can support them as they struggle to recover old or discover new goals and purposes in daily life. They can support them as they redirect their life stories and struggle to find meaning and bases for hope. They can help them see that they will relearn the world in grieving again and again throughout their lives as they learn an acceptable way of going on for a time and then find that they must change course once again. Caregivers can help grievers modify their beliefs and faiths and support them as they seek security, peace, consolation and a return to feeling at home' in the world despite human limitation and vulnerability and the mystery that pervades the human condition.
Helping grievers to find lasting love
Caregivers can be especially effective when they understand how lasting love can motivate relearning, temper pain and anguish, and restore wholeness for individual grievers as well as their families and communities. They can listen to the stories about the dead child that grievers have to tell, share stories of their own, encourage grievers to remember, preserve their memories, and share them with others. They can join with grievers and encourage them to join with others in exploring meanings of the stories and memories. They can help them to identify legacies from the child's life, deep lessons in living and ways in which they are different for having known and loved the child and having been known and loved in return. They can encourage them to explore and discuss with them how they can preserve those legacies and embrace them in the daily lives and the unfolding of their life narratives. As they do these things, they can help grievers learn to love and continue to feel loved by the child who died.
Issues in establishing bereavement support services
Families develop relationships with staff members, sometimes over many years. Some want to maintain an ongoing
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relationship with those who cared for the child. They often worry that the child will be forgotten. During the transition after the child's death, when medical care is not needed any more, families and staff have to navigate a changing relationship [20]. Issues of professional boundaries come into question. Many families express anger and resentment when either the care providers or the institution itself do not acknowledge the death of the child. This is when a bereavement program within palliative care, or as part of another area within the institution, can be of great service to both families and staff. They are commonly found in the array of services offered by hospices, and in some hospital-based and community palliative care programs but less often in general hospital services.
A bereavement program allows professional caregivers to refer a family and transfer their care to those who are adequately trained and have the time and resources to support families through their grief process. Furthermore, they offer all families the same services, including support groups, memorial services, and grief education programs. Technology has provided innovative approaches such as grief-list-serves for families to connect over vast geography or to not have to enter the hospice or hospital again. Families no longer have to contend with not knowing whether the individual physician, nurse or mental health worker will be available to support them. Sensitive programs develop means for families to see those who actually cared for the child at events like memorial services when staff are welcomed as well. Most importantly, bereavement programs connect grieving families to each other, while providing them with support resources. A bereavement program reflects commitment to care of the family since typically these services are offered free of charge.
A bereavement program can be an important bridge between families and staff. For families the program can make professional end-of-life care more sensitive to the needs of families through provision of information and education that communicates to staff what families experience. Services like offering handprints of a child for the family to take home with them after the death signal the caring nature of the institution. Many palliative care services offer photographs of the child (either before or after the death), a lock of the child's hair, plaster handprints, or keepsakes (blankets, stuffed animals, signs from the bed, etc.) that were part of the child's life. Families consistently report that the moments immediately prior to and following the death are never forgotten. Staff and volunteers need to be well informed about how to be sensitive in all, even brief, exchanges with families at this time. Caregivers can influence families' experiences in either positive or negative ways with significantly long lasting impressions.
For professionals and volunteers who help children and families through these difficult times in their lives, witness some heart-wrenching scenes, and are constantly reminded of the frailty and preciousness of life, the program can offer help too. Often staff members and volunteers have their own grief issues and need support. A bereavement program can help in debriefing after a death, validating feelings, helping with retention, and avoiding burnout. Historically, medical professionals were taught to desensitize themselves to these experiences and to maintain an emotional detachment . New thinking has tempered that approach. Rather than desensitizing , professionals are encouraged to sensitize to this powerful human material. They too must find ways to incorporate grief, death, loss and mystery into their practice. This is challenging given the western medical approach of science having the answers . Professionals can learn over time to move through the pain of providing this kind of care and come to a place where they can offer a deep compassion to families [21]. Self awareness of one's own personal history of loss and beliefs about death, dying and afterlife is crucial. Without it, caregiver beliefs and cultural/spiritual biases can interfere with the experience of the family. For caregivers, strong coping techniques, good self-care and ongoing education and support are necessary components not only to do the work, but also to avoid burnout.
Training bereavement professionals and volunteers need to receive includes understanding of models and theories of grief, how to facilitate support groups, and systems and resources in the community that are of support to families. Many hospitals offer a menu approach (support groups, memorial services, grief workshops, etc.) for families to choose which is useful. But the individual intervention should be tailored to the unique experience of the griever. Even within groups there is a delicate balance between supporting the needs of the group, while allowing for the individual's process. Interviews need to carefully assess the meaning of the experience as filtered through cultural and spiritual beliefs. Discussion should include the person's life story, and its current set of issues.
Working with children who are grieving brings all of the above with the extra challenge of knowing how development interfaces with grief and loss. Therefore, comfort with interventions that include play and art are necessary skills. Many activities can be used to elucidate feelings, expand understanding, and develop a sense of normalcy in an unusual situation. One type of play that has been of use is playing with a tray of dirt, toy coffins, flowers, rocks, material for headstones and little people. Children explore the material in whatever way makes sense for them. Often they will recreate the grave site of their sibling. Some siblings report that the only way they have visited their sibling since the death is in this manner. While adults often find this a morbid activity, children gravitate to it with relish.
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Case One 10 year-old, who had attended grief support groups for the 2 years since her brother's death, normally did not speak much in group. It was believed by the facilitators to be due to a combination of preadolescence and personal temperament. When she heard that burial play was the activity for the evening, she ran into the room stating, I love this activity , and then proceeded to unfold her story and that of her brother's death with both innocence and wisdom.
Circumstances where special services are more likely to be needed
It is important to identify when grievers are at risk of unnecessary suffering and more likely to need specialized professional services. It would be a mistake to conclude that grievers will always benefit from specialized services; most are remarkably resilient using their own resources and drawing upon the support of family and friends. However, grievers sometimes meet with extraordinary complications in the challenges they face that compromise, inhibit, interfere with, undermine, or even block their effectiveness in grieving.
Often grievers recognize when they are becoming frustrated, preoccupied, mired, or stuck in their grieving. And they are often able to take some responsibility for reaching out for help. But sometimes caregiving professionals or volunteers have to recognize that some grievers are not doing well on their own or in a support group and are likely to benefit from specialized interventions. Professionals should learn as much as possible about grievers' vulnerability to extraordinary complications in grieving [11, 22]. They should learn to recognize when they are out of their depth and refer grievers when appropriate to others who are specially trained, including psychologists, psychiatrists, child life specialists, trauma specialists, family therapists, social workers, clergy, and other spiritual and cultural advisors. They should also take some responsibility for reaching out and making services available to developmentally-challenged populations and survivors of traumatizing deaths.
Here we discuss four major types of extraordinary complication where the need for specialized intervention increases.
Extraordinary challenges in the relationship between the child who died and the griever
Grievers are vulnerable to some extraordinary complications that relate to their relationships with the dead child. Wishing that the child were still alive is a common aspect of missing him or her. It is nearly inevitable since feelings, desires, motivations, habits, and dispositions that took root in the expectation that he or she would still be alive are not extinguished the instant the child dies. Such wishing is harmless and episodic and the grievers do not seriously imagine that such wishes can or will come true. However preoccupying and fervent longing for the child's return, by contrast, is dangerous. It hinders or stalls grieving as it undermines the griever's motivation to reshape and redirect his or her life. The griever knows the child is gone. Yet, paradoxically, the griever desires the child's return with every fiber of his or her being. This desire can motivate no action and nothing can fulfill it since the return is impossible. Such longing frustrates the griever, induces helplessness, and can paralyze him or her. It persists as the griever stays in retreat from a new and frightening reality, dwells in a desire that once held close a beloved child, receives secondary rewards for his or her obvious distress, or fears that he or she will forget or stop loving the dead child.
In some situations the griever may have to contend with unfinished business with the child who died: words unsaid and deeds undone (especially when the death was sudden or unexpected) or, more profoundly, the very life of the child that may be experienced as unfinished. The griever may become preoccupied with such unfinished business with the dead child. In general, the greater the burden of unfinished business, as the griever experiences it, the more likely it will distract him or her from relearning the world effectively. Given the common perception that they have not finished, or have even failed in, raising and nurturing the child, parents are especially susceptible to having extraordinary difficulty here [23].
Some grievers must contend with hurtful or dysfunctional aspects of their relationships with the child who died. Loss of a less than fully loving relationship is not less difficult to deal with. Negative ties can bind more tightly than positive ones and often destructively. A griever may become caught up in extreme anger for what a child did or failed to do, for example being careless, saying or doing hurtful things, rebelling, abusing substances, getting in trouble with the law, or attempting suicide. Or a griever may become caught up in extreme guilt for what he or she did or failed to do in life with the child, for example, tension and conflict, being too controlling, saying or doing hurtful things, jealousy, abuse, failure to protect, neglect, having actually contributed to the death, or feeling relief when the child died. Grievers may fervently long for the child's return to address these issues. Resentment, frustration, and bitterness may prevail. Grievers struggle even to acknowledge or express such negative ties or feelings. Family and social pressures may reinforce their reluctance.
Extraordinary complications deriving from attributes of the bereaved
Grievers are also vulnerable to some extraordinary complications that have to do with their own limitations in ability to
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relearn. He or she may lack well-developed emotional, psychological, behavioral, social, intellectual, or spiritual capacities needed to relearn the world but have the potential to acquire them. Or the griever may be compromised because he or she is a child, adolescent, developmentally delayed, or because his or her coping capacities have been affected by injury, physical illness or dementia. The griever may suffer from any of a wide variety of diagnosable psychological disorders, which may have been present prior to bereavement or been acquired subsequently. In either case, they can block or interfere with effectively relearning the world.
Children may suffer from the myth that they do not grieve which can lead some to neglect them and exclude them from family or community responses to death; siblings, in particular, are indeed the forgotten grievers. Children's reality changes too, but without developed orientation to reality prior to the death, their disorientation is greater unless someone answers their questions honestly and helps them understand and experience what the realities of death and loss entail. What they overhear or misunderstand in adult conversation often confuses them. Some children lack linguistic abilities to explain what troubles them; express their thoughts, feelings and other reactions; or state what they need or hope for in response. Unprecedented feelings frighten some and leave them at a loss as to what to do or say. Some imagine wrongly that they are responsible for the death, for example, because they wished the child dead. Loss often disrupts or undermines development of self-confidence, self-esteem and self-identity. Some feel helpless and need to learn they have choices in response to choiceless events. Regressive behavior is common, as is reenactment in play. Children lack models for, and need guidance and support in finding, appropriate things to do in the mourning period and in putting together new life patterns. Dependence makes them more likely anxious about the basic necessities of life, including food, shelter and love. Death often breaks bonds just when children are testing and learning to value and trust them.
Siblings especially, must contend with the loss of one of the commonly longest lasting relationships of a lifetime the significance of which is too often underappreciated [1]. Their responses fall into four categories:
I hurt inside including the range of feelings and behaviors that are part of grief.
I don't understand relating both to their developmental level and how, without explanation, they are bewildered by the death and related events.
I don't belong including both their desire to help but now knowing how to and also to their being excluded from decisions and events.
I am not enough referring to siblings particular vulnerability to comparisons with the dead brother or sister [1].
Children typically lack mature beliefs about such things as the meanings of life, death, and suffering. When a sibling or peer dies, some realize for the first time that they too could die. Children may need specialized professional help when their disorientation, emotional distress, or dysfunctional behaviors at home or at school persist in ways that seem not to be subsiding, when they have been involved in the death in some way, or when support from family or peers is lacking.
Extraordinary complications deriving from characteristics of the death
Grievers are vulnerable to extraordinary complications that relate to difficult circumstances surrounding the death itself. A griever may suffer fixating trauma, typically from horrific circumstances of death or experiences where he or she has unexpectedly witnessed something appalling. Another may be traumatized by multiple deaths that occur all at once or so close together that he or she experiences the challenges of grieving as overwhelming. Such traumatic events hold the griever's attention and block him or her from dealing with the challenges of relearning the world. When a griever experiences the death of a child as preventable or caused by human action, he or she can become preoccupied with those responsible, mired in legal system and media distractions and interferences, or deeply fearful that he or she lives in a threatening, menacing and untrustworthy world [24]. Those grieving the death of a child in a car accident might imagine the horror and details of the circumstances and the child's damaged and disfigured body. A parent grieving their child's death by a violent act might imagine not only the images, but also the terror their child felt prior to death. The parent of a baby who has died from nonaccidental injury by a family member struggles with the loss, the complex family issues, and the challenge to his or her assumptions about whom he or she can trust.
Extraordinary complications in the social environment
The social circumstances of some grievers can seriously interfere with their relearning. Families and community members can hinder or undermine effective individual coping: They can visit unwelcome expectations or make excessive demands upon the griever. They can abuse power or authority, attempt to manipulate or control the griever, or interfere paternalistically in the name of what is best as they see it. Some families have been quite dysfunctional prior to the child's illness or death, and others may become so as a consequence of these
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pivotal events. For example, parents who are in a decomposing marriage may blame each other for the death of their child. Or a deeply troubled sibling may act out in ways that further threaten family equilibrium. Some grievers may experience themselves as disenfranchised in their grieving [25] Sometimes others fail to recognize their grief, for example when young children, a developmentally delayed relative or elderly grandparent is thought not to be affected by the child's death. Sometimes others dismiss the significance of the griever's relationship to the child, for example when a stillborn baby or neonate dies, or if the dead child was severely handicapped. Siblings or childhood friends may be forgotten or neglected, a noncustodial parent after a divorce may be excluded from rituals, or a gay man or lesbian who raised a child, but is not the birth parent faces legal or societal limitations on his or her rights to actively and visibly grieve. In still other instances grievers may be disenfranchised because something is repugnant about the death, for example, where suicide, homicide, violence, mutilation, or stigmatized diseases are involved. Unwillingness to acknowledge a griever's hurt and desire to remember and love the dead child, and lack of social support, or even sanction, compound challenges grievers face as they add secondary losses; intensify feelings of abandonment, alienation, guilt and shame, anger, depression, and meaninglessness; and exclude the griever from social responses to death such as funerals and other rituals.
Summary
In pediatric palliative care, we regularly face the death of children and we must extend our care to those who are bereaved. In doing so, it is helpful to remember that we each engage in life and death. We try to make meaning of our experiences. We learn to carry pain and sit with mystery. When faced with the death of a beloved child, we relearn a world that misses, honors and remembers that child. We do all of this whether we are a Chinese-American father who is anticipating the death of his son in a pediatric intensive care unit or a 10 year-old bereaved sister playing and telling stories about her brother who died.
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