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    Module 5 Loss and grief in end of life care

    Introduction

    Grief serves the purpose of saying goodbye to a loved one. Many emotions of varying intensities are experienced by a person who has experienced a loss. This module will look at the difference between loss, bereavement, grief and mourning, enable the learner to identify loss and grief in others and be able to support the person in managing their grief. Loss is also experienced by the person who is at the end of their life. This module will enable the person to identify the types of losses that a person might have. The end of this module will look at the ways in which grief can affect the care worker, especially the concept of cumulative grief. The learner will be able to identify sources of support and ways in which they can help themselves when dealing with bereavement.

    Learning outcomes

    When this module is completed, the learner will:

    □ Know the process of loss and grief

    □ Understand loss in the context of end of life care

    □ Understand how to support people following bereavement

    □ Understand how to manage own feelings of loss and grief when working in end of life care

    The process of loss and grief Loss

    Loss is the reality of living without something or someone.

    A bereaved person will not only experience the loss of their loved one but also other losses such as:

    □ Companionship, love and support

    □ A future together and the plans made

    □ Finances

    □ A way of life.

    Grief

    Grief is an emotional response to loss. Grief is an intensely personal reaction, but common elements are experienced in varying degrees by all bereaved individuals and are all normal components of the grieving process.

    The time scale of the grieving process varies considerably and may be helped or hindered significantly by the amount of support available for the bereaved to help them explore their loss and continue with their lives.

    Mourning

    Mourning is the outward expression of grief and is the process by which people adapt to loss. Cultural customs and rituals also influence the process.

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    Bereavement

    Bereavement refers to the overall process of mourning and grief.

    The factors that can affect the intensity and duration of a person’s grief

    There will be a number of factors that will influence how long and how deeply-felt grief is:

    □ Whether there is a close relationship with the person who has died

    □ The individual’s experience of loss during their lives

    □ Support the grieving person has - their social networks

    □ Religious or spiritual beliefs

    □ The age and gender of the person who is grieving

    □ If there has been any trauma or disease causing disfigurement to the body

    □ How dependent the bereaved was on the dead person, e.g. financially,

    emotionally or physically. The person who has died may have been the main

    wage earner, a parent or a carer for the loved one left to grieve

    □ A person may feel the need to hide their feelings because they find emotions

    difficult to express, have been taught that showing emotion is not

    appropriate or they are being ‘strong’ for others who are grieving (e.g. their

    children or an elderly parent)

    □ Whether the loss is sudden or expected

    □ The quality of the relationship immediately prior to death.

    Unresolved grief

    Although everyone grieves differently, there will be certain parts of the grieving process that need to be worked through so the person can reach resolution. For some people, they have great difficulty working through this, and may remain ‘stuck’ somewhere in the grieving process.

    □ Some people may not have had the opportunity to grieve properly. This could be for a number of reasons. They may have busy lives and lots of responsibilities. Other members of the family may have become reliant on that person to support them in their grief. This may lead to the grief reaction occurring sometime after the death. This is not necessarily a bad thing as it is a release for the person’s feelings of grief and part of the healing process

    □ Sometimes people may start to grieve but become ‘stuck’ at some stage of the grieving process. This may be in the initial stage where the person remains shocked and in denial and the person may remain stuck in this stage for years

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    □ Sometimes people may carry on with their life but be unable to think of very little else but their dead loved one. They may focus entirely on the dead person – affecting relationships with others as they, for example, refuse to clear the person’s room, clothes or other possessions.

    Unresolved grief can affect the person’s life, relationships and mental health. Help can be given in the space of voluntary groups or care professionals such as counsellors.

    Enduring grief

    A type of grief that will never go away, but does not necessarily paralyse the person in the same way as someone ‘stuck’ in disbelief or denial. Some people may describe the pain of grief as an ‘open wound’ and never reach resolution. However, the person is able to move on with their lives; the grief does not subside but it does not ruin their lives either. Instead, it endures.

    Hidden grief

    This is grief that is not visible to others. People may knowingly hide their grief because they feel that to show their grief may be unacceptable, possibly due to the nature of their relationship to the deceased or some underlying feeling of guilt about their grief. The person may not know how to express their grief as this is beyond their experience. The person who experiences hidden grief will have to bear their grief alone and unsupported, as others imagine the person is coping.

    How people may respond to loss and show their grief

    Reaction to the process of dying and the death of an individual will affect each member of the family and friends in different ways. This, in turn, will impact on the existing dynamics of the family or group. The result may be that loved ones feel supported and comforted. However, ill-feeling and conflict may arise. It is important that care workers are aware and understand these dynamics and provide support or access the support of others if they are unable to meet the needs of the family, friends, or group.

    Functions of grief

    Grief serves the purpose of saying goodbye and letting go of the deceased, and until this is achieved, the individual who is grieving will be unable to move on with their lives.

    Emotions that a grieving person may go through Numbness

    Feeling emotionally numb is often the first reaction to loss; this can last a few hours, days or even longer. It is thought that this is a coping mechanism which can help individuals to get through the practical arrangements and family pressures that surround arranging a funeral. If this phase goes on for too long, it could lead to problems in coping with life. It is important to realise that the shocked relative may not remember very much in the way of information around this time. However, he or she may remember vividly the way that the news was imparted.

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    Denial

    Denial can help the bereaved person to cope with the loss for a short while, as they gradually absorb the fact that the death is real and final.

    Pining

    As the numbness and denial disappears, it may be replaced by a sense of yearning or pining for the dead person. The bereaved may feel a sense of the dead person’s presence or may feel that the dead person is nearby and be desperate to find him or her. The bereaved person may experience sleep disturbances and bad dreams, they may even suffer from hallucinations (e.g. seeing the person who has died).

    They may need extra reassurance that they are not going insane during some of these experiences.

    Sadness and depression

    The bereaved person may suffer overwhelming sadness and may find themselves breaking down and crying frequently. They may find it difficult to cope with everyday activities, and may even attempt to withdraw themselves from social contact. It is important to recognise the signs and symptoms of clinical depression and to take action to obtain support for the individual affected.

    Guilt

    Guilt is a common experience following bereavement. The individual may have certain regrets and may feel that they did not do enough for the deceased person. This may be even more pronounced if the death was sudden, and the bereaved person never got a chance to say goodbye. Loved ones who have had to make a decision to withdraw life support or stop or not commence treatment may experience unbearable guilt.

    Anger

    Anger is a common feeling after the death of a loved one. It can be a confusing emotion especially if it is directed at the deceased person. Anger can take the form of blaming medical and nursing staff for not doing enough or for failing to treat the illness. It is important to listen to individuals who address this anger towards staff. They may have a legitimate reason for complaint. A satisfactory outcome may actually help the bereaved in coming to terms with their grief. A danger may arise if the individual directs anger inwards as this could lead to self-harm, self-neglect or suicide. Intervention may be necessary.

    All emotions may be compounded if the decea

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