17 Bereavement

How small and selfish is sorrow. But it bangs one about until one is quite senseless.

Queen Elizabeth the Queen Mother, in a letter to Edith Sitwell shortly after the death of King George VI

Grief is a normal reaction to a bereavement or other major loss. Its manifestations will vary from person to person but will often include physical, cognitive, behavioural and emotional elements. For a close personal bereavement, grief is likely to continue for a long time and may recur in a modified form, stimulated by anniversaries, future losses or other reminders. Although people are likely to be changed by the experience of grieving, most, in time, find they are able to function well and enjoy life again. A compassionate approach surrounding the death can positively impact on bereavement.

Symptoms experienced by a bereaved person may include a hollow feeling in the stomach, tightness in the chest or throat, oversensitivity to noise, shortness of breath, muscle weakness, lack of energy and dry mouth. People may misinterpret these symptoms as indications of a serious illness and require reassurance.

For many, a sense of shock and numbness is the initial emotional response to bereavement. Feelings of anger (directed at family, friends, medical staff, God, the deceased or no one in particular) and feelings of guilt (relating to real or imagined failings) are common, as is a yearning or desire for the return of the deceased. Anxiety and a sense of helplessness and disorganization are also normal responses. Sadness is the most commonly recognized manifestation of grief, but the greatest depth of sadness, something akin to depression, is often not reached until many months after the death. Feelings of relief and freedom may also be present, although people may then feel guilty for having these feelings.

Disbelief and a sense of unreality are frequently present early in a bereavement. The bereaved may be preoccupied with thoughts about the deceased and ruminate about the lost person. It is also not uncommon for the bereaved to have a sense (visual, auditory, etc.) of the presence of the deceased. Short-term memory, the ability to concentrate and sense of purpose are frequently detrimentally affected.

Appetite and sleep may be disturbed, and dreams that involve the deceased, with their attendant emotional impact for the bereaved, are not infrequent. The bereaved person may withdraw socially, avoid reminders of the deceased or act in an absent-minded way. They may also engage in restless overactivity, behaviour which suggests that they are at some level searching for the deceased, or visit places or carry objects that remind them of the deceased. Some people contemplate rapid and radical changes in their lifestyle (e.g. new relationship or move of house), which may represent a way of avoiding the pain of bereavement. Such rapid changes soon after a bereavement are not normally advisable.

He was my North, my South, my East and West,

My working week and my Sunday rest,

My noon, my midnight, my talk, my song;

I thought that love would last forever: I was wrong.

W.H. Auden (1907–73): Funeral Blues, 1936

Grief and bereavement have been analysed over many years, and it is generally agreed that there are no single ‘correct’ or ‘true’ theories that explain the experience of loss or account for the emotions, experiences and cultural practices which characterize grief and mourning. Within broad cultural constraints, individuals manage bereavement in different ways, reflecting the diverse range of human responses and cultures. In the UK there are a number of accepted ways to behave, but most are characterized by stoicism and emotional restraint, especially in public. In contrast, bereavement support services emphasize the importance of emotional expression, acknowledgement of the reality of the loss and the sharing of thoughts and feelings with others.

Most cultures provide accounts of what happens after death (such as religious accounts of an after-life) and provide guidance about how the bereaved should feel and behave, but in an increasingly secular society these may now have less influence. The range of beliefs, practices and rituals associated with death is large, particularly in multicultural societies, although many adapt to the customs of the host culture.

These are based on developmental notions of change and growth. It is assumed that bereavement is a process in which there is an outcome: individuals need to progress through phases or stages and tasks need to be accomplished. The theories are based on the assumption that people have some control over their feelings and thoughts and that these can be accessed through talk. Individuals need to accept the reality of the loss so that the emotional energy can be released and redirected.

The effortful, mental process of withdrawing energy from the lost person is referred to as ‘grief work’. It is regarded as essential to break relationships with the deceased, and to allow reinvestment of emotional energy in new relationships with others.

The most influential and earliest theories emerged from psychoanalysts such as Freud,¹ who also described normal and pathological grief. Bowlby² proposed a complex theory of close human relationships in which separation triggers intense distress and behavioural responses. Parkes³ proposed that people progress through phases in coming to terms with their loss and that they have to adapt to changes in relationships, social status and economic circumstances. Kubler Ross⁴ also proposed a staged model of the emotional expression of loss, described in terms of shock/denial, anger, bargaining, depression and ultimately acceptance.

Worden⁵ based his therapeutic model on phases of grief and tasks of mourning. He suggested that grief was a process, not a state, and that people needed to work through their reactions to loss to achieve a complete adjustment. Tasks that need to be accomplished in order to allow recovery from mourning included:

Task 1—To accept the reality of the loss

Task 2—To experience the pain of grief

Task 3—To adjust to an environment in which the deceased is missing

Task 4—To emotionally relocate the deceased and move on with life

Each of these theories have been modified and developed by their authors and, despite subsequent criticisms, they remain very popular ways to explain bereavement and grief and are used by the public and health professionals. Staged or phased models provide guidance that bereaved people are progressing satisfactorily along a path over time, even though this progression may not be linear. However, some people may become ‘stuck’ and unable to move through grief satisfactorily. Various techniques are used to support and encourage people to move forward and to begin engaging in life again.

These ideas are based on an assumption that if certain things, called ‘stressors’, are present in sufficient amounts, then they trigger a stress response which is both physical and psychological. People are able to adapt to most things, but things that challenge the adaptation process are considered to be stressful. Lazarus and Folkman’s transactional model of stress and coping⁶ proposed that any event may be seen as threatening, and that cognitive appraisal is undertaken to estimate the degree of threat needed to mobilize the resources to cope with it. Coping may focus on dealing with the threat directly (problem-focused), or may emphasize the emotional response (emotion-focused). Stroebe and Schut⁷ developed this idea, proposing that after death people oscillate between restoration-focused coping (dealing with everyday life) and grief-focused coping (e.g. expressing their distress). People move between these extremes but become more restoration-focused with time. This is known as the ‘dual processing model’.

This is based on an assumption that people wish to maintain feelings of continuity and that, even though physical relationships may end at the time of death, relationships become transformed but remain important within the memory of the bereaved individual. Walters⁸ in the UK and Klass et al.⁹ in the US, have suggested that continuing relationships (emotional bonds), emphasize the importance for the living of integrating the memory of the dead into their ongoing lives, recognizing the enduring influence of the deceased.

Give sorrow words. The grief that does not speak whispers the o’erfraught heart, and bids it break.

William Shakespeare, Macbeth, IV, iii, 209–10

In practice, bereavement support, whether through GPs or professional accredited counsellors, helps clients tell their story. GPs may become involved in grief counselling, but their main role is to screen for people who may be most at risk ( see p. 875–6) from a complicated bereavement. Most bereaved people manage well with their own resources and with the help of community and faith groups such as Cruse (a charity offering free bereavement counselling and support groups).

The philosophy of the hospice movement encompasses the care of patients and their families after death and into the bereavement period. The provision of bereavement support is regarded as integral to their services. Most services are based on the assumption that bereavement is a major stressful life event but that a minority of people experience substantial disruption to their physical, psychological and social functioning. A multidisciplinary team (MDT), including social workers, nurses, chaplains, counsellors and doctors, is usually involved. But, occasionally, clients present such difficult and complex problems that psychiatrists, clinical psychologists or other specialist healthcare workers may be required. NICE¹⁰ recommends that three levels of support should be available, depending upon the complexity of the needs of the bereaved person.

There is evidence that offering support to people who have adequate internal and external resources can be disempowering and detrimental to their coping. Bereavement support may include a broad range of activities such as social evenings, befriending, one-to-one counselling and support groups, etc. (Table 17.1).

Normal and abnormal responses to bereavement cover a continuum in which intensity of reaction, presence of a range of related grief behaviours, and time course betray the presence of an abnormal grief response.

Complicated grief involves the presentation of certain grief-related symptoms at a time beyond that which is considered adaptive. We hypothesize that the presence of these symptoms after approximately 6 months puts the bereaved individual at heightened risk for enduring social, psychological and medical impairment.

Prigerson, et al., 1995

Complicated mourning means that, given the amount of time since the death, there is some compromise, distortion or failure of one of more of the…processes of mourning.

Full realization of the pain of living without the deceased is denied, repressed or avoided The deceased is held on to as though alive. Symptoms do not resolve spontaneously and need active intervention

Rando, 1993

…is more related to the intensity of a reaction or the duration of a reaction rather than the presence or absence of a specific behavior.

Worden, 1982

Complicated grief includes the following in abnormal intensity or duration (Table 17.2):

Common psychiatric disorders related to grief include:

While frank psychiatric disorders following bereavement are reasonably straightforward to diagnose, it is more difficult to pick up complicated grief, in which the pathological nature of the grief response is only distinguishable from normal grief by its character. Recognition of complicated bereavement calls for an experienced clinical judgement that does not ‘rationalize’ the distress as understandable.

One feature of the grief of most children is that they do not sustain grief over continuing periods of time, but tend rather to dip in and out of grief—jumping in and out of puddles, rather than wading through the river of grief.

Adults should be aware that children will learn what is ‘acceptable grief’ from the adults around them.

Childhood bereavement services seek to support children with their loss experience and to help parents deal with a bereaved child.

Payne and Rolls (2008)

Children may be bereaved of family members (e.g. siblings, parents or grandparents) and this will precipitate a cascade of changes and loss. They will become a child of bereaved parents who may need help in dealing with their own loss and also help in how to parent a bereaved child. Children will be helped by knowing that the expression of feelings is acceptable. Children may express their emotions and grief in many ways, e.g. through play, artwork, music, drama, etc.

Children’s understanding, responses and needs will be affected by many factors, including their previous experiences of loss and how these were handled. It is also important to consider the age and the developmental level of the child, although any attempt to consider responses according to age will require flexibility as there is, of course, considerable crossover between different children.

Children under the age of 2–3 years may have little concept of death, but will be aware of separation and may protest against this by detachment or regressive behaviour. Children of this age need a consistent caregiver, familiar routines and the meeting of their physical and emotional needs.

Children aged between 3 and 5 years do not see death as irreversible. Rather, their concerns will relate to separation, abandonment and the physical aspects of death and dying. Their response may include aggressive and rejecting behaviour. They may also become withdrawn or demonstrate an increase in clinging or demanding behaviour. There may also be regression to infant needs. Routine, comfort, reassurance and a simple answering of their questions will help a child of this age. They should be allowed to participate in family rituals and to keep mementos of the deceased. Adults should be aware of the words they use since they can be misinterpreted (e.g. do not associate death with sleep or a long journey).

Children aged between 6 and 8 years seek causal explanations. A whole range of behaviours may be evidence of their response to grief—withdrawal, sadness, loneliness, depression, acting-out behaviour or becoming a ‘perfect’ child. Short, honest, concrete explanations will help a child of this age, as will maintaining contact with friends and normal activities. Short-term regression may be allowed and they should be reassured that they will always be cared for. Involvement in the family’s grief-related rituals will also help.

Pre-teenage children appear to have a calmer and more accepting attitude to death. They often have a good factual understanding of what has happened. The child should be encouraged to talk about the deceased and be provided with clear and truthful answers to their questions. The feelings of adults do not need to be hidden, allowing the child to provide mutual help and reassurance.

Teenaged-year children are engaged in a search for meaning and purpose in life and for their identity. They feel that they have deep and powerful emotions that no one else has experienced. Teenagers may exhibit withdrawal, sadness, loneliness and depression, or else they may act-out in an angry, hostile and rejecting way. They may seek to cover up fears with joking and sarcasm. Young people of this age need as much comfort as possible, involvement, boundaries, a sense that their feelings are being taken seriously and reassurance that their feelings are normal. Continuing contact with their peers should be encouraged. Young people will often identify for themselves someone with whom they feel comfortable to talk.

The death of a child is a devastating loss, particularly in times where most childhood illness can be prevented or cured. It profoundly affects all those involved—parents, siblings, grandparents, extended family, friends and others involved in caring for the child. As a community we rarely experience the death of a child, which makes it all the more difficult when we do. There is a sense that the natural order of things has been upset.

Interpret resolution of grief to parents, and that it is not a betrayal of their deceased child. Health professionals need to recognize the significance they may have in a family’s life. Many children are treated over long periods and the hospital/hospice may become something of a second home. Health professionals also care for families during the intense highs and lows of serious illness, and may even be present at the time the child dies. The significance of this cannot be overstated. These relationships cannot be abruptly ended and many (but not all) families will want ongoing contact with those people they feel truly understand what they have experienced. A follow-up appointment with the child’s paediatrician should always be offered to discuss the child’s illness and treatment, the results of any outstanding investigations including post-mortem examinations and how the family is coping.

Siblings almost universally experience distress, but many feel unable to share this for fear of burdening their already fragile parents. One of the many factors which influence sibling grief is developmental level and the impact this has on the child’s understanding of illness and death.

Most children learn to recognize when something is dead before they reach three years of age. However, at this early age, death, separation and sleep are almost synonymous in the child’s mind. As children develop and experience life, their concept of death becomes more mature. Table 17.3 shows the six subconcepts acquired during this process (average age of attainment in brackets).

The following is adapted from A Practical Guide to Paediatric Oncology Palliative Care, Royal Children’s Hospital, Brisbane, 1999.

After the family, the school community may contain the people most affected by the death of a child—friends, fellow students, teachers, administrative staff. Parents form part of a wider school community. It may well be the first bereavement experience for the child’s peers, their parents and teachers. Close attachments are formed between children and their teachers, so that the death of a child may be a personal as well as a professional loss.

In a school, there will be a range of grief responses. It is anticipated that both staff and students will be vulnerable to stress and may express themselves differently. For the student, the closer they were to the child the more profound will be the consequences. Teachers may notice a change in the other student’s behaviour, thought processes, concentration and academic performance. A greater level of support, monitoring and care may be warranted, even for those students who may not be expressing their grief in an obvious way.

People who may be at increased risk are:

The school is in an ideal position to provide opportunities for students to be supported as well as to identify those who may be experiencing difficulty. The child’s parents should always be consulted before any information is released so that their privacy and the best interests of any siblings are considered and respected.

Ways in which the school can help include:

The assessment of bereavement risk presupposes that some individuals will display a grief reaction that does not fit a ‘normal’ or expected pattern or level of intensity. The factors that influence complicated bereavement are: