Chapter 11. Loss and grief
Elizabeth Forster and Judith Murray
Learning outcomes
Reading this chapter will help you to:
» discuss the concepts of grief and loss
» describe factors that influence grief responses
» describe differences between sudden and anticipated loss
» discuss anticipatory grief
» discuss parental grief
» discuss developmental differences in relation to children’s understanding of death and their grief responses, and
» describe supportive ways to interact with parents and siblings in the context of loss.
Introduction
Grieving is a normal human process of healing that involves a person dealing with the variable pain of being separated from someone or something of importance to them, and adjusting to a world in which that valued person or thing is missing. Such adjustment involves an ability to integrate that which was lost into the ongoing life of the person so the lost person or thing is removed from a central role in daily functioning, while its possible ongoing effect on the individual remains recognised and respected. Understanding grief and loss as concepts within the context of caring for children, young people and families is important, as appropriate responses and understanding are required at this extraordinary time.
Setting the scene: a clinical scenario
You are working in a maternity ward where you are caring for 40-year-old Jacqui who has just given birth to a baby girl, Julie, who was stillborn. Jacqui learnt a few days ago during her antenatal appointment that her baby had died in utero when the baby’s heartbeat could not be detected. She was then admitted to the labour ward and labour was induced. Jacqui is accompanied by her husband Mark and her step-children Alex, aged 4 years, and John, aged 14 years. Jacqui had been undergoing fertility treatment for 3 years prior to Julie’s birth and had suffered numerous miscarriages.
Defining loss, grief and bereavement
A burgeoning theory and research base concerning grief and bereavement has arisen in the past few decades. A useful starting point in coming to understand this literature is to reflect upon definitions of grief, bereavement and loss, as well as the themes and trends in current research.
Although many definitions exist in the literature, for the purposes of this chapter, bereavement involves the loss of someone or something. The term has often been confined to the event of loss through death. However, it is also used to describe not only the event but also the internal and external processes of adaptation of individuals and family members across the many facets of the experience around death. This includes the anticipation of the loss, the loss itself and the experiences of adjustment following this loss (Genevro et al. 2004 p. 498). These dual processes of bereavement that include the internal processes of adaptation to the death itself such as dealing with separation anxiety and finding meaning, as well as the external processes of adaptation or restoration-oriented activities that may involve relationship changes and living arrangement changes, both occur following the loss (Stroebe & Schut 1999).
Raphael (1984) defines grief as the emotional responses to loss: the complex amalgam of painful effects, including sadness, anger, helplessness, guilt and despair. While many commonalities exist, individuals vary in their experience of grief—in its intensity, its duration and its means of expression (Murray 2005a, Genevro et al. 2004). Some people may not experience distress or display grief responses anticipated by others. However, such responses do not necessarily indicate some problem in grieving (Wortman & Silver 2001). In some cases, loss may represent the end of a burden and result in a lesser degree of distress for the person. In other cases, previous life experiences may have led to the person being less fearful of the grief experienced and hence less distressed. In fact, the experience of loss can bring forth positive emotions and changes to the affected person(s) (Calhoun & Tedeschi 2006).
While the term ‘bereavement’ refers to situations involving death, the more general term of ‘loss’ refers to situations over which people grieve. Loss has been defined most simply as the experience of being parted from something or someone of value. More formally, Miller and Omarzu (1998) define loss as the experience of being separated from that of value in that loss is ‘produced by an event which is perceived to be negative by the individuals involved and results in long-term changes to one’s social situations, relationships, or cognitions’ (p. 12).
As such, it may not be confined to a single event, but may encompass an ongoing set of events. In being parted from something of value to us, complete dissociation from the lost object may never fully occur and the ‘something’ over which a person may grieve is defined by the person experiencing the loss, rather than others. Therefore, grief and loss are not confined to loss through the death of a loved one. It includes events that are an inevitable part of life’s journey, such as those associated with ageing or moving from primary to secondary school, or the private, less tangible losses that human beings experience such as missing out on a job, being betrayed by a friend or unrequited love. Loss may also include deprivation or neglect such as homelessness, disability or abuse (Murray 2005a).
Current trends in thinking on grief and loss
Most schools of psychological thought have had something to say about grieving, with most proposing explanatory models. There have been contributions from psychodynamic theory (Freud 1917), attachment theory (Bowlby 1961, Kübler-Ross 1969, Parkes 1972, Raphael 1984), social learning theory (Doka 1989, Glick et al. 1974), and personal construct theory (Neimeyer & Mahoney 1995).
Traditional models of grief, such as the phases and stages model proposed by Elisabeth Kübler Ross (1969), have had widespread appeal, as they assist in illuminating the experience of loss. However, these models have limited empirical support, as grieving individuals demonstrate varied responses to loss rather than progressing through distinct stages or sequences of psychological states (Neimeyer 2000). Often these models have been seen as competing for influence in the discussions of grief, when, in reality, each theory has added more to our understanding of this important human experience.
The early theorists provided the basic understandings in describing the process of mourning. In later times, others have added understanding, provided greater clarity, or made corrections when empirical data or new theory contradicted accepted understandings. Some models have combined the theoretical emphases of different schools. For example, the task-based models of mourning (Worden 1991, Rando 1993) were a combination of the psychodynamic concepts of grief work and the phasic models of attachment theories. More recent integrated models such as the Four Components Model (Bonanno & Kaltmann 1999) and the Dual Process Model (Stroebe & Schut 1999) have sought to employ the knowledge of many schools of thought.
Assumptive worlds
Another perspective that offers much to the understanding of grief and loss is that of assumptive worlds. Parkes (1975 p. 132) defined the assumptive world as:
‘The individual’s view of reality as he believes it to be, i.e., a strongly held set of assumptions about the world and the self which are confidently maintained and used as a means of recognizing, planning and acting.’
Assumptions are learned and confirmed through the life experiences of each individual. They are learned within the contexts of living within families, community and culture, as well as through individual life experiences. Essentially, assumptions are those understandings of the world that are reinforced over time by certain events and interactions. As such, assumptions can be both positive and negative, and become the filter through which people interpret their world and events that happen in it.
These assumptions provide the individual with the ability to make predictions about the world and so order their behaviour to conform to this world. Such predictability provides a sense of security in living everyday life. Janoff-Bulman (1992) argues that in western civilisations, individuals hold three basic assumptions:
1. the world is benevolent (or malevolent)
2. the world is meaningful (or meaningless), and
3. the self is worthy (or unworthy).
Some life events challenge the security of the world and challenge assumptions. Parkes (1988 p. 55) defined psychosocial transitions as life events:
‘…that a) require people to undertake a major revision of their assumptions of the world, b) are lasting in their implications rather than transient, and c) take place over a relatively short period of time so that there is little opportunity for preparation.’
For many people, illness and death are psychosocial transitions. Parkes (1975) argues that there are different responses within the worldview to psychosocial transitions. The former view of the world, or at least some aspects of it, can be abandoned, which may lead to either a satisfactory or a frightening outcome, depend ing on whether the event seriously threatens the sense of security. But some may refuse to abandon this worldview and hence try to maintain it by trying to force the current world, or parts thereof, to conform to the previous assumptive world. Some times, the old assumptive world remains unchanged and exists alongside the new world. The individual then oscillates between the two worlds—for example, when a person maintains hope for health in the face of increasing evidence of a degenerating condition.
Certain types of deaths are more likely to shatter one’s assumptive world, including deaths that are sudden or without warning or those that occur because of a deliberate act (Davis et al. 2000), deaths that are untimely, such as the death of a child or the loss of a spouse at a young age. These deaths shatter fundamental assumptions—for example, that children should outlive their parents, and that children should grow into adults and lead long and happy lives.
In response to these losses, the bereaved may embark upon a search for meaning that involves reaching a new understanding—a ‘relearning’ and ‘reinvesting’ in the world that has changed because of the loss of the loved one (Wheeler 2001). As well as relearning or reconciling one’s world from the past to the present and future in light of their loss, the bereaved person may also need to find renewed purpose and reason in living (Wheeler 2001).
Sudden versus expected loss and anticipatory grief
Death may be expected or unexpected, the characteristics of which differ and can influence the impact on survivors. According to Iserson (2000), characteristics that may differ depending on whether the death is expected or not include the cause of death, the age of the deceased, when and where the death occurs, the invol ve ment and reaction of the survivors, the site of last contact with health professionals, resuscitation, autopsy requirements, and immediate family rituals and requirements.
The family members in the case scenario are coming to terms with the sudden and unexpected loss of their long-awaited baby. In a sudden unexpected death, the family may have only a very short time of preparation or no warning at all. The place of death may be in a public place, at home or at work, or in an emergency department or intensive care unit. Family members may or may not be present at the time of death and may be contacted and gather gradually. The family may have witnessed resuscitation procedures and may need to discuss autopsy requirements soon after their loved one’s death. In some cases, coronial requirements may prevent easy and unlimited access to the person who has died or may necessitate the involvement of the police as the investigative arm of the Coroner. All this often occurs when a person is dealing with the reactions of shock that can compromise their ability to assimilate and deal with all that is required of them.
In contrast, when the death of a loved one is expected, it usually occurs following a long chronic or life-threatening illness and may occur at home or in a hospital or aged care facility. The death usually occurs weeks, months or years following the original diagnosis, and family members may have had some time to prepare and are often present at the time of death (Iserson 2000).
The many potential differences between sudden, unexpected and expected loss have the potential to influence the relationship between health professionals and bereaved families and the nature of support provided following loss. Paediatric death introduces additional complexities.
When the death of a child is sudden and unexpected, health professionals have a limited timeframe in which to initiate support and must provide this support to parents/families experiencing overwhelming and intense shock and grief. This may not only limit the amount and type of support health professionals can offer, but also have a negative impact on their perceived ability to provide this support. Following sudden or accidental death, many variables will influence the severity of shock families experience: the child who died as a person, when he or she died, the relationship or degree of attachment between the parents and family and the deceased child, and the coping ability of the parents and family members (Sanders 1986). Sanders (1986) also highlights that the manner in which health professionals impart the news of the death to relatives can have long-lasting and negative effects on their bereavement and leave them feeling guilty or shocked if the news was delivered in an insensitive way.
Perinatal death in itself is also different to some extent from other child death in that the whole event of pregnancy is involved. Perinatal death is defined as an unexpected death of a baby during pregnancy, labour or following birth, and encompasses miscarriage, ectopic pregnancy, loss of a twin, stillbirth and neonatal death (Clark Callister 2006).
This experience of sudden loss may contrast to that experienced by parents and families when the child’s death is expected, such as following a long-term chronic illness. Rando (1986) suggests that parents may have more time to anticipate the loss and begin their grieving and that this may have a positive impact on their coping following the loss. When individuals are faced with the likelihood of a significant loss, they may embark upon the process of anticipatory grief (Fulton et al. 1996).
Anticipatory grief refers to commencement of the grieving process prior to the anticipated loss and may have positive outcomes, as it enables people to begin to work through the changes surrounding the loss and therefore lessens the trauma experienced when the loss occurs. However, whether anticipatory grief actually lessens the impact of the loss once it occurs is the subject of debate in bereavement literature (Walker et al. 1996). It should never be assumed that when a death was anticipated that it will be less painful than a sudden death, or that grieving will be a less difficult process. In fact, it is suggested that in some situations where caregiving has led to other problems or a relationship is dependent or guilt-ridden, the grief can be intense (Brazil et al. 2002). In addition to anticipatory grief, parents, the child and family members are likely to have been on a journey punctuated by painful procedures, therapies and surgery in an effort to cure or enhance quality of life, periods of hope, loss of hope and cycles of relapse, remission and relapse (Rando 1986).
The relationship between the child, their family and health professionals in the long-term care situation will also contrast to the context of sudden unexpected death. In the former case, relationships may have developed over a long period of time and opportunities may have arisen to instigate bereavement support much earlier and offer it more constantly and consistently prior to the child’s death.
Grief within the context of the family
In the context of child, youth and family nursing, it is essential to understand developmental differences in responses to loss. When loss occurs, it impacts on all members of the family. In the case scenario, the loss of baby Julie has impacted on the parents Jacqui and Mark, as well as their children, Alex and John, in unique ways. To explore your understanding so far, refer to the critical reflections and questions in Box 11.1.
Box 11.1
Following your reading in the chapter so far and reflection on the case scenario, discuss how the following factors could influence the grief response for each of the family members:
1. their age and developmental stage
2. their gender
3. history of the loss/trauma
4. the nature and quality of the relationship with the deceased, and
5. the circumstances surrounding the loss (e.g. anticipated or sudden unexpected, traumatic, and family relationships and expectations).
Loss is both a personal and an interactional process that occurs within a social context where people grieve within personal, family and societal systems (Neimeyer 2000).
People’s values and expectations may assert their influence on the experience of grief in subtle or overt ways. In some cases of perinatal loss, there may be powerful societal expectations concerning grieving and sometimes limited recognition of the family’s need to grieve and hold rituals (Clark Callister 2006). The manner in which family, friends and acquaintances respond to grieving families, albeit well-intentioned, can sometimes deepen rather than ease the pain experienced following loss of a loved one (Shumaker & Brownell 1984). In the case scenario, consider how social networks and expectations may help or hinder Jacqui, Mark, Alex and John’s grief.
Debate surrounding whether it is beneficial for parents to hold their stillborn baby continues. To understand this further, refer to the research highlight in Box 11.2.
Box 11.2
Reynolds (2004), in his discussion about whether parents should hold or not hold their stillborn baby, reminds us that seeing or holding the deceased baby may be confronting for parents and ‘may deprive them of the much needed protection of denial’ (p. 87). However, he advocates an individualised rather than ‘one size fits all’ approach to psychosocial care of parents following stillbirth, where options are offered to parents along with an informed discussion of the risks and benefits. Such an approach acknowledges that ‘patients have the right to absorb or not absorb the full reality of their loss … parents must face the reality of their loss on their own terms, not ours’ (p. 87).
Loss of a child: parental grief
According to Rando (1986 p. 6):
‘The loss of a child through death is quite unlike any other loss known . . . In comparison with other types of bereavement, the grief of parents is particularly severe, complicated and long lasting, with major and unparalleled symptom fluctuations occurring over time.’
Parents who have lost a child often say that their pain is so deep that it lasts a lifetime, despite their efforts to find meaning in life and move forward (Schwab 1997). The death of a child symbolises many social losses for parents whose focus and purpose had centred on nurturing their growth and development (Sanders 1986). Society holds the parents of successful children in high esteem and parents love and feel responsible for their children and believe that they will outlive them, their existence ensuring that parents retain a small sense of immortality (Sanders 1986).
When a child dies, parents can feel that they have failed their child and may become immersed in guilt and blame that may be directed towards themselves and their partners (Sanders 1986). Regardless of whether the child is young or an adult, or the death sudden or expected, the loss of a child is devastating, and shatters parental dreams, hopes, expectations, fantasies and wishes for that child (Rando 1986, Wheeler 2001, deJong-Berg & Kane 2006).
The grief of other children
There is considerable debate in the literature concerning the capacity of children to mourn. On one side, psychodynamic theorists, such as Wolfenstein (1966), Deutsch (1937) and Anna Freud (1960), argued that mourning was not possible until late childhood or adolescence. In contrast, John Bowlby’s (1963, 1980) attachment theory argued that children as young as toddlers experienced grief reactions similar to those of adults. With respect to the attachment theory, it was argued that once a child was able to attach to another, they would mourn when that love object was removed. Other theorists (Furman 1964, Kliman 1989) have suggested a middle ground, arguing that children from 3 to 4 years of age are able to mourn.
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
