12 Loss, grief and bereavement

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When you have completed this chapter, you should be able to:

  1. Understand the meaning of loss, grief, mourning and bereavement.
  2. Be aware of the stages of grief and the tasks of mourning.
  3. Appreciate the difference between the ways adults and children experience grief.
  4. Understand how children experience grief at different ages.
  5. Describe ways to help children grieve at different ages.
  6. Understand anticipatory grief and how to manage it.
  7. Understand complicated and delayed grief and how to manage them.
  8. Appreciate the importance of memory work.
  9. Describe ways to support families through grief, loss and bereavement.

Introduction to loss, grief, mourning and bereavement

The death of a child can be described as one of life’s most devastating experiences, affecting parents, siblings and a wider circle of relatives and friends. The death of a child is never easy, but the circumstances of a child’s death can affect how the family respond to their grief.

It is important to understand the differences between loss, grief, mourning and bereavement and other grief terms such as anticipatory, complicated and delayed grief.

12-1 What is loss?

Loss means that you no longer have something. In children’s palliative care, feelings of loss may occur:

There are primary (initial) losses and secondary (later) losses:

Loss is linked to change. Change in the present, or possible future change, often leads to a sense of loss.

Loss could include losing a child’s good health or future hopes for your child.

12-2 What is grief?

Grief is what the person experiences as a result of a loss. It is what a person thinks, feels and experiences in response to a loss, particularly in relation to the death of a loved one.

Grief is the person’s response to a death or loss.

12-3 What is mourning?

Mourning is the outward expression of one’s grief and what other people observe when someone is grieving. Depression, confusion and losing interest in some aspects of life can occur when a person is mourning. People mourn when they cry, talk or write about the death.

Mourning is the behaviour that people observe when someone is grieving.

12-4 What is bereavement?

Bereavement is the period of time after a deep loss. It can also refer to the emotional state a person experiences during the period of grief and mourning after a loss such as death.

Bereavement is a period of time during which the person is grieving and mourning a loss.

12-5 What is anticipatory grief?

Anticipatory grief refers to a feeling of grief occurring before an impending loss. Children can also experience anticipatory grief when they feel their death or the death of a loved one is near.

Anticipatory grief can occur at any time before the impending death of a person.

12-6 What is complicated grief?

Complicated grief is the increase of grief to the level where the person is overwhelmed, resorts to uncharacteristic behaviour or remains in the state of grief without progression of the usual mourning process.

Complicated grief is overwhelming grief or grief that does not progress through the mourning process.

12-7 What is delayed grief?

Delayed grief is grief that is temporarily ‘shelved’ or denied until something triggers a need to focus on it. Due to the fact that the grieving did not take place at the time or shortly after the death or diagnosis, the extent of the delayed feelings might be frightening and the causes of these feelings might not be immediately recognised because they occur sometime after the loss.

The grief process

12-8 What is the normal grief process?

Loss, death and grief are part of the human life cycle and affect us all. The way we grieve is an individual matter and is influenced by many factors. It is, therefore, important to remember that people will grieve in many different ways. There is no right or wrong or a specific timeframe in which a person should grieve because this will be influenced by the circumstances surrounding the loss or death.

12-9 What are the normal reactions a person may experience or display after a loss and while grieving?

A broad range of feelings, thoughts and behaviours can be experienced by the person who is grieving. Even though children will grieve differently to adults, they will still experience many of the same reactions and responses as adults.

The grieving person may experience any or all of the following:

It is important to understand the wide range of reactions and responses that are experienced as part of the normal grieving process.

12-10 Do you start to only experience grief and loss at the time of death?

No. These responses are experienced throughout the course of the illness and will extend into the period following the death. You may experience loss at many different times during the illness, for example, at the loss of someone’s wellbeing, and this causes you to grieve and exhibit signs of bereavement and mourning before their death.

12-11 Who is likely to grieve in the family?

The child’s illness and death will have an effect on the larger family group including the parents, the siblings, the grandparents, and the other extended family and friends. They will all be likely to experience grief in some way or another, depending on the relationship they have with the child.

The sick child may also experience strong feelings of grief as they think about their own impending death and the losses they have experienced due to their illness.

12-12 Who else may grieve the death of a child?

Healthcare providers and team members who have provided care for the child, particularly if they have done so over a long period of time, are also likely to experience feelings of loss and grief. The child’s school teachers, classmates and close friends will also grieve and may need to be supported through counselling.

12-13 What factors may have an influence on the normal grief process?

Many factors can influence how family members grieve. It is important to be aware of these, as a combination of these factors could make complicated grief more likely. Some factors that may affect the nature, intensity and duration of the normal grief process include:

12-14 What are models of grief?

Models of grief are helpful in understanding different reactions which may be present during the journey through grief. However, models do not fit all people at all times. People live in different cultural contexts and have their own diverse belief systems. Models of grief can be used to deepen our understanding of what people may experience.

Common models or stages of grief include Elisabeth Kübler-Ross’ five stages of grief and William Worden’s four basic tasks of mourning.

12-15 What are Elisabeth Kübler-Ross’ five stages of grief?

In 1969 a Swiss psychiatrist, Elisabeth Kübler-Ross, identified five stages of grief. While helpful as a guide, it is important to note that not everyone experiences all five stages and they do not necessarily follow the given order. Some people can experience all five stages in one day and often swing between the stages. It is also important to remember that people go through these stages at every point of the illness and not only at the time of death. These five stages of grief are:

  1. Denial and initial shock: Often the first reaction to a loss is a feeling of disbelief and numbness which can be expressed through phrases such as, ‘It cannot be happening to me.’ Denial and shock can help us cope, pace our feelings of grief and make survival possible.
  2. Anger: Experiencing anger is normal, although the grieving person may be shocked by these feelings. The anger could be aimed at friends, family members, the doctors, the sick person, the dead person and at God. What is important to realise is that underneath anger is emotional pain.
  3. Bargaining and guilt: People experiencing this stage will do anything if only their loved one is spared. They may attempt to enter into a deal with God to save their loved one or to postpone the inevitable. At this time, feelings of guilt are normal. The ‘if only’ thoughts experienced may cause a person to find fault in themselves and what they believe they may have done differently.
  4. Sadness and depression: These emotions may involve withdrawal, loss of interest in activities, apathy, tearfulness and lack of concentration.
  5. Resolution and acceptance: In time, the person learns to accept the loss and finds a way to rebuild their lives without their loved one.

Elisabeth Kübler Ross’ five stages of grief include denial, anger, bargaining, sadness and acceptance.

It is important when using this model of grief that people are not labelled in terms of the stage or phase of grief they are experiencing e.g. ‘he is in the denial stage.’
Dr Elisabeth Kübler-Ross was born in Switzerland in 1926 and moved to the USA in 1958 where she trained as a psychiatrist. In 1969 she wrote her ground-breaking book ‘On Death and Dying’ in which she proposed the five stages of grief. She wrote a total of 25 books on dying and related topics, received many honorary degrees and died in 2004.

12-16 What are William Worden’s four tasks of mourning?

William Worden is an American psychologist whose theory describes four tasks of mourning. These being:

  1. To accept the reality of the loss: Although the bereaved person knows intellectually that their loved one has a life-limiting or life-threatening condition, that they are losing functioning or that they have died, they may still experience a sense of disbelief. Integrating the reality of the diagnosis, the losses along the way, or the death means ‘taking it in’ with their whole being.
  2. To process the pain of grief: It is normal and appropriate to experience pain during bereavement. The pain can be physical, psychological, emotional, social and spiritual. It is important to acknowledge and work through this pain as avoidance will likely lead to problems at a future time.
  3. To adjust to the world without the deceased: There are three adjustments to be made, namely external adjustments, internal adjustments and spiritual adjustments. In other words, how the death affects your everyday function, how it affects your sense of self and how it affects your beliefs, values and assumptions about the world.
  4. To find an enduring connection with the deceased while starting a new life: The bereaved person creates a balance between remembering the person who died and finding a way to continue to live a meaningful life without them.

Worden’s four tasks of mourning are accepting the reality of the loss, processing the emotional pain of grief, adjusting to life without the loved one, and finding a way to remember them.

Professor William Worden is an American psychologist who wrote the book ‘Grief Counselling and Grief Therapy: A Handbook for the Mental Health Practitioner’ in 1982.

12-17 Is the grief process always experienced as moving from one stage or task to the next in sequence?

No. These stages and tasks are common within the grieving process but are not always experienced as moving neatly from one stage or task to the next. To believe this puts an expectation on the time that a person should take to grieve and that they will then be ready to move on once they have worked through each stage or task.

The grief process does not always move in order from one stage or task to the next.

12-18 Is grief always experienced in the same way and in a specified timeframe?

No. Parents often describe the grief process after the loss of a child like being on a rollercoaster or in a whirlpool. A range of different emotions are experienced, from great anger, deep sadness and depression to feelings of relief, then back to feeling angry or sad again. Grief has also been described as ‘chaotic, messy and complicated’.

There is also no time limit on grief as individuals experience grief differently. Many parents will experience grief at the death of their child for a lifetime, but in time learn to accept the loss and find a sense of peace and healing. Telling a grieving person that ‘it is time to move on’ or to ‘get over it’ is unhelpful.

Grief is experienced differently by each individual and there is no time limit as to how long a person should grieve.

Supporting families in their grief and bereavement

12-19 How do we support families before the death of the child?

When a child becomes gravely ill, the natural order of the family changes and the lives of all the family members are changed forever. This is a time where the family and the sick child have little control over what happens to them and few choices.

Giving them choices and some control in an uncontrollable situation empowers them and assists them in making good decisions for themselves.

A family can be helped by doing the following:

It is important to give families choices and involve them in planning to help empower them at a time when they have very little control.

12-20 How do parents experience the loss of a child?

The loss of a child is one of the worst experiences a parent can endure. It is not possible to anticipate how parents will be affected by the loss of their child and they will require special attention and support during this time.

12-21 How do we support families at the time of a child’s death?

The parents will always remember the moment of their child’s death including how they were supported at the time of death and immediately after. Even if the family are prepared for the death, they will be in shock when it happens, so we can begin by meeting their practical needs:

12-22 How can we support parents through their bereavement?

Parents who are grieving need to be able to:

Ways in which parents can be supported include:

12-23 How do we recognise complicated grief in parents?

Complicated grief in parents refers to bereavement accompanied by extreme symptoms of separation distress and trauma. To consider that someone is experiencing complicated grief these symptoms must have lasted at least six months and led to significant functional impairment.

They need to experience extreme levels of separation and traumatic distress symptoms which include:

Immediately refer the parent who displays symptoms of complicated grief to a qualified professional for further support and guidance.

12-24 How can siblings be supported through their grief and bereavement?

Siblings have unique relationships with one another and how they grieve will also be unique. Siblings need their own time to grieve and need to feel safe to express how they are feeling. It is important to remember that children grieve differently to adults. For example, fear stemming from misunderstandings (misconceptions) could lead the siblings to believe that they too may have or get this illness and may die, which would cause them great anxiety.

Children’s reaction to the death of a sibling may be influenced by their age, their development stage, their personality as well as the family, cultural and religious influences in their lives.

Parents must be encouraged to speak in an open, honest and age appropriate way with their children to help them cope better with their loss. Siblings should be offered opportunities to participate in planning of the memorial service and included in decision making when and where appropriate. Speak to them about their ideas of ways they would like to remember their sibling.

Involvement of schools for ongoing support is vital and if there are any indications that the sibling may be experiencing complicated grief, they need to be referred for professional bereavement support.

Siblings of the dying or dead child must be helped through their grief and bereavement.

Children and grief

12-25 How do children understand death?

An understanding of death includes the knowledge and acceptance that:

Children are not able to fully understand these three concepts when they are very young but develop a greater understanding of death as they get older and mature.

Very young children do not understand that everyone will die one day and that there is no physical existence after death.

12-26 How do children experience grief?

Children, like adults, experience grief, whether it is linked to the loss of a loved one or linked to their own diagnosis and probable death and what that means to them.

Children grieve differently to adults. Children’s understanding of health, illness, death and dying go through stages according to their age. The stage of a child’s understanding will also depend on their own previous experiences with death and grief.

The majority of children who experience loss will have three concerns, namely:

Children need to be reassured that they were not responsible for the death.

Children grieve differently at different ages and do not grieve the same way as adults.

12-27 What grief behaviours do children show?

The sick child and the siblings may struggle with strong feelings of grief. Children experiencing grief can exhibit many different behaviours. These are normal expressions of grief and are not dysfunctional, unless they persist.

Grief behaviours in children include:

It is important to recognise that these behaviours are often exhibited due to a need for attention but also because of a fear of the unknown and a fear of death.

Behaviour changes are common in children who are grieving.

12-28 How can children be supported through grief?

Grieving children need to know that there is someone who is prepared to take the time to listen and be there for them. They need to feel safe in order to express how they are feeling. Be prepared to repeat conversations, as children take time to process information. Be patient, open, honest and consistent with your responses. Reassure them that grief is normal and that it’s okay to be upset about what has happened.

Ways that can promote healthy coping for children can include the following:

12-29 What are the characteristics of grief in infants?

Infants up to the age of two years may show the following characteristics:

12-30 How can you help infants grieve?

The following may be helpful:

12-31 What are the characteristics of grief in young children aged 2 to 6 years?

Children between the ages of 2 and 6 years may show the following characteristics:

Young children do not understand that death is final and that the loved one will not be coming back.

12-32 How can you help young children of 2 to 6 years to grieve?

The following may be helpful:

12-33 What are the characteristics of grief in children of 7 to 12 years?

Children between the ages of 7 and 12 years may show the following characteristics:

12-34 How can you help older children of 7 to 12 years grieve?

The following may be helpful:

12-35 What are the characteristics of grief in adolescents of 13 to 18 years?

Adolescents between the ages of 13 and 18 years, experience grief similar to adults and may show the following characteristics:

12-36 How can you help adolescents grieve?

The following may be helpful:

Offer a secure and caring presence to anyone who is grieving.

12-37 How do we recognise anticipatory grief in children?

Anticipatory grief is exhibited in different ways. Children may:

12-38 How do we manage anticipatory grief in children?

Useful ways of managing anticipatory grief in children include:

Death and disease may be taboo or too emotionally painful for some families to discuss. Some family members avoid conversations or clam up and say nothing. This leads to the child being isolated when they are most in need of support.

12-39 What are the risks for complicated grief in children?

Children may be at risk for complicated grief due to several features related to the loss:

12-40 What are the signs and symptoms of complicated grief in children?

Important signs and symptoms of complicated grief are:

12-41 What should you do when you recognise a child is experiencing complicated grief?

It is important to look out for prolonged signs of complicated grief and refer the child to a psychologist or suitably trained professional.

Be aware of signs of complicated grief and ensure the child receives help from a qualified professional.

Supporting children after death

12-42 Should children participate in grief rituals?

Yes. It is very important that children be allowed to participate in grief rituals. Participation assists in developing good coping skills as well as uncomplicated grief patterns.

Children should not be excluded from grief rituals as it helps them process their grief.

12-43 Should children be allowed to view the dead person’s body?

Viewing the dead body can be helpful but needs to be the child’s choice. They may change their minds several times, so keep the option open. It may help the bereaved child to say goodbye, to accept the reality and finality of death and to be less scared.

It is important that they are given clear and detailed information about what will happen. Where the body will be and what it might look like. Choices and control are important, for example, how and when they enter the room and who they would like to have with them at the time.

12-44 Should children attend funerals?

As with viewing the body, children should be allowed to attend the funeral when this is appropriate. It will be important to:

Children should be allowed to attend a funeral if they wish to.

12-45 What other ways can we assist children to cope after the death of a loved one?

If children do not want to participate in the rituals such as viewing the body or attending the funeral it is important to give them the opportunity for an alternative goodbye.

Examples could include:

Memory making

12-46 What is memory work?

A child who is dying wants to know that they will always be remembered and not forgotten by their family.

Memory work is a physical way to allow families to share and hold onto memories of the person who has died. Revisiting this memory work can help children integrate the loss into their growing and changing lives over time.

Memory work can provide an opportunity for the dying child to leave behind memories as well as create a way for families to remember the person who died.

12-47 What memory making activities can dying children be encouraged to do?

Before a child dies, they can be encouraged to create memories or create keepsakes as a way for the family to hold onto their memory. These activities can include the following:

A memory box or memory book is a very useful way of keeping items or pictures that help one remember a person who died.

12-48 What memory making activities can assist the family share and hold onto memories of the person who died?

Activities that can assist the family include the following:

12-49 What impact can the death of a child have on you as healthcare provider?

The death of a child can have an emotional, physical, spiritual, behavioural and cognitive impact on the healthcare provider. There often may be feelings of failure when the child dies – feelings that they have failed because they could not save the child’s life or failed in their social role as adults to protect the child from harm and feel they have betrayed the parents who trusted them with the most valuable being in their life.

It is important that healthcare providers examine and understand their personal feelings about death and dying to be effective in providing ongoing support to the family, as well as prevent burnout and a probable risk of developing compassion fatigue.

12-50 How can you deal with your own grief as a healthcare provider?

The following suggestions may assist in dealing with your own grief:

As a healthcare provider it is important to use both organisational and personal strategies to cope with your own grief.

Refer to chapter 4 for more information on self-care, compassion fatigue and burnout.

Case study 1

Leroy and Shirley’s daughter, Bianca, died of leukaemia two months ago at the age of 6. Shirley is still very upset, crying most of the day and does not sleep well at night. Hannah, who is 13-months-old, has become increasingly irritable and clingy, and John, who is 4-years-old, keeps asking if Bianca will be back to play with him. During the grief counselling session, Shirley says that she still cannot believe that this has happened, and that she just wants to wake up from this nightmare. She admits that she thinks Hannah is being naughty and she does not know how to handle her clinginess. She also says she doesn’t know how to answer John’s question so keeps telling him that Bianca has gone away and won’t be coming back.

1. What types of losses have Leroy and Shirley experienced?

They have experienced the primary loss (death) of their daughter and with this loss they will have experienced many secondary losses. For example, the loss of a future with her, the loss of the dreams and hopes they may have had for her, the loss of seeing her go to school and the loss of her being the eldest child.

2. Who is likely to grieve in this family?

Leroy, Shirley, John, Hannah, the grandparents and the extended family and friends are all likely to grieve.

3. Who else may be grieving?

The other people who may grieve, although not family, might be those who had built a relationship with Bianca and the family, i.e. the healthcare providers who cared for her, her school teacher and classmates.

4. Will Shirley and Leroy’s grief be experienced in the same way and will they be able to move on quickly?

No. Shirley and Leroy will grieve differently, as no two people experience grief in the same way. However, as parents losing a child their grief process may feel like a whirlpool of emotions that come and go. Their grief process may be influenced by several factors such as the role they each played in Bianca’s life. Leroy and Shirley will not ‘move on’ quickly. Parents who experience the loss of a child may grieve for a lifetime but in time they should learn to accept the loss and find peace and healing.

5. Why is Hannah behaving as she is and what advice can you give Shirley to help her through this stage of her grief?

The clinginess and irritability that Hannah is displaying are normal characteristics that infants display while grieving. Reassure Shirley that Hannah’s clinginess and irritability are signs that she is grieving.

The advice you can give her may include:

6. What could Shirley be encouraged to do and say when John asks when Bianca is coming back.

Children John’s age do not always understand that death is final and that the dead person will not return. By telling John that Bianca has gone away she may be reaffirming the idea in his mind that Bianca may return. Shirley needs to be honest and use simple language and words when talking to John, avoiding words like ‘gone away’ but rather using the words ‘died’ and ‘dead’. She can relate the death to an aspect of his experience such as the death of a pet or explain that when people die, that they can’t be seen anymore but that they can be remembered by looking at pictures.

7. Do you think Shirley is experiencing complicated grief?

No, she is not experiencing complicated grief. Normal grief can be expressed in a number of ways. Her being sad, crying all day and not sleeping well are the normal reactions a person who is grieving would display in the first few months after the death of their child.

8. What memory making activities could Shirley and Leroy be encouraged to do with John and Hannah?

The following are ways that the family could create memories and help John and Hannah integrate the loss of Bianca into their lives:

Case study 2

Sean and Rebecca are expecting their third baby. The two older siblings, both girls aged 4 and 6 years of age, are very excited for the birth of their little brother. The pregnancy has gone smoothly and there have been no concerns. Soon after delivery it is discovered that their infant, George, has Trisomy 18 (a serious chromosomal condition that results in many physical abnormalities). The family have been prepared that it is unlikely that George will live for very long.

1. What kind of grief would Sean and Rebecca start experiencing at the time of diagnosis?

At this point and as long as George is alive, Sean and Rebecca will experience anticipatory grief.

2. How could you support the family at the time of George’s death?

Remembering that the family will always remember what happened at the time of their child’s death, the family should be treated with great compassion and given as much support as possible:

3. Should the siblings be allowed to view George’s body when he dies?

Yes, the siblings should be allowed to see the baby once he has died but this should not be forced on them. They should be given the choice and their decisions respected.

4. Should the siblings be allowed to be part of the grief rituals?

Yes, it is very beneficial for children to take part in grief rituals. Their participation will assist them in coming to terms with the loss of baby George.

5. What other rituals can the siblings participate in if they do not attend the funeral?

The siblings could participate in a smaller memorial service within the home where they get to choose the songs they wish to sing and can be encouraged to draw pictures and speak about their memories and feelings for their dead brother. They could be taken to visit any places which will have significance to them and their memories of their brother.

6. What grief behaviours may the siblings show after the death of George?

Due to their young age, grief behaviours of the two girls may include:

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