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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 deceased is perceived by their loved ones to have contributed in some way towards their own death (e.g. alcoholism, drug addiction, risk-taking behaviour, suicide).

Anxiety

Anxiety and panic attacks may become apparent following bereavement. Prolonged and uncontrollable anxiety suggests that the bereaved individual may need professional help.

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Cognitive

A person may experience poor concentration, memory impairment and loss of reality (daydreaming). The person may feel that they hear the deceased person’s voice or even see them.

Behavioural

Behaviour such as restlessness, agitation, crying, withdrawing from others and loss of interest in what is going on around them, their family, work, hobbies or friends.

Spiritual/Religious

A person may find comfort in their spiritual and religious beliefs and be able to make sense of their loss. Alternatively, the person may question their faith and belief system and feel confused and let down.

Middle

Within this phase of the process of grieving, the fierce pain of bereavement begins to fade. There is a decline of the initial emotions and physical symptoms. There is a readjustment to life without the loved one. However, the sense of having lost part of oneself never really goes away entirely. Within this phase, there is some attempt to return to the normality of life.

Resolution

The person going through bereavement remembers their loved one with fondness and pleasure and can now recall the good moments. Resolution is the letting go of the person who has died and the start of a new sort of life.

These various phases of the grieving process very often overlap and show themselves in different ways in different people. There is no definite time period that this process should take. Each person will vary depending upon multiple factors. It is important to have knowledge of this in order for the care team to provide on-going support. You may need to ask for support and guidance from other more experienced members of the health care team. It is essential that you recognise when you may need support. Observing and listening to the way that members of the care team support individuals may be of help to you.

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Understanding loss in the context of end of life care

The fears people commonly experience towards the end of life

A person who is dying may have many fears. Recognising and acknowledging these will help care workers to support the individual to alleviate these fears. Fears may include:

□ Fear of pain or physical illness – many people fear they will suffer agonising, untreatable pain. They also may fear what effect the illness will have on their physical well-being and what it will do to their bodies

□ Fear of choking or suffocation - this may particularly affect those who have swallowing difficulties and side-effects. People may have fears about the side-effects, such as those of chemotherapy or controlled drugs such as Diamorphine

□ Fears of psychological effects – people may fear they will ‘lose their mind’ and not be able to make decisions or choices

□ Fear of losing control – this could refer to emotions, physical functions or aspects of daily living, such as control over finances

□ Fear of being a burden to others

□ Fear of separation – this may be fear of being separated from loved ones during their illness or even after death, especially if they have strong religious beliefs

□ Fear of dying alone - this can be a particular worry for those who live alone, have ill partners or family who live a long distance away

□ Financial worries - they may fear that those left behind will not be able to manage financially. People who are still working may find loss of earnings leads to financial worries

□ Fears and worries about how dependent children will cope without them.

The types of loss an individual might experience at end of life

Anticipatory loss refers to the sense of loss and grief that begins before the actual death of a person.

It is understandable to think that grief only begins after a person dies. This may be so if death is unexpected; but when death is expected, the grieving process can begin as soon as a prognosis is given. The word cancer can cause some people to grieve long before any life-limiting prognosis is given.

Losses a dying person may experience

A dying person may experience many losses due to advancing illness and physical and psychological effects. Loss is not loss of life at this point, but loss of the things they can no longer have or do due to their deteriorating condition.

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These may include: □ Loss of control over own life, bodily functions, etc.

□ Loss of independence

□ Loss of productivity

□ Loss of employment

□ Loss of security

□ Loss of family role

□ Loss of work and social role

□ Loss of community

□ Loss of future

□ Loss of hope

□ Loss of physical, psychological, functional and cognitive abilities

□ Loss of ability to complete plans

□ Loss of loved ones

□ Loss of consistency and predictability

□ Loss of freedom

□ Loss of home environment

□ Loss of routine

□ Loss of hobbies and interests.

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How to support an individual at end of life who is experiencing feelings of loss

Sometimes individuals know that there is something wrong long before they are told. They may have been in hospital for some time or may have been having extensive tests and examinations. The breaking of the news then confirms what they have suspected all along.

Many people learn that they have an incurable illness from a doctor, in surroundings that are unfamiliar to them. Depending upon your role within your care setting you may be the person who accompanies the doctor as they speak to the person and their loved ones. Having some understanding of the issues surrounding the breaking of bad news may help you in fulfilling this role.

Breaking bad news is one of the most difficult tasks faced by health care professionals.

Supporting those in denial

Remember, denial is a normal response. No one wants to believe they are dying. It is a way of protecting themselves, a defence mechanism.

Accept the feelings and do not try to force the individual to face facts – they are simply not ready.

Do not judge the person. They may have extreme ideas and beliefs about failure of care or even misdiagnosis but this is part of the grieving process and should not be taken personally.

Let the person discuss the same things over and over. This may help them come to terms with their situation. Expect and be prepared for changes in mood and outlook.

□ Ask for the advice of other care professionals if there are difficulties communicating with, and between, yourself and the person

□ Allow the person to take their own time and be there to listen, answer questions and comfort in times of distress.

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Anger

A person may feel anger for a number of reasons, which may include the losses they have suffered or anticipate. They feel resentment and jealousy – ‘Why me?’, ‘I’m too young.’, ‘Why not the old lady in the bed next to me?’ Anger may stem from feelings that the prognosis would be better if professionals had diagnosed the illness sooner, provided better or more prompt treatment, etc.

□ Sometimes, you may feel the anger is directed at you instead. However, difficult as it is, do not take this personally. Look beyond the behaviour and see the distress. Remain calm and caring

□ Allow the person to say why they are angry and, if you can, offer a solution. Make efforts to do so. Tell the person you can accept their angry feelings

□ Encourage the person to talk about their feelings. This can be easier said than done, especially if the person is particularly hostile to your approaches and offers of support. Ensure you listen. Ask the person to tell you how they feel and then let them talk, cry or shout

□ Do not be tempted to avoid a person in this stage of grief. This will only make them feel lonely and isolated and will fuel their anger as they become resentful of the lack of attention and contact

□ Try to diffuse anger by giving the person your time even if, initially, they simply direct their anger at you

□ They will eventually trust and form a bond with you, talk more and diffuse their anger

□ Be patient – a ‘demanding’ person may be a distressed, lonely, frightened person

□ Show the person empathy and try to find out if the anger is triggered by anything in particular

□ Ask people to think of times when they had to face difficult situations and reflect on how they dealt with these. They may remember what strategies they used to help them through these difficulties.

□ Always ensure the person is given choice and they are encouraged to maintain their independence.

□ People may become angry if they are not allowed to do things themselves and are not in control. Once they feel they are able to be independent and are able to choose and are in control, they may feel calmer and their anger will reduce.

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Supporting those in the bargaining phase

If the person’s hope and goals are realistic and achievable, they should be encouraged.

Even though the person is dying, they can still hope. This will give the person something positive to focus on and aim for. Bear in mind that these hopes and goals may change as the person’s illness progresses.

Spend time discussing with the person how they plan to achieve these goals and offer help and support where this is required.

For example, arranging for a lady to choose a knitting pattern and yarn for a garment for an expected grandchild will help her achieve her goal and give her purpose and hope in her life.

Always ensure that you report and make accurate records of your discussions so the rest of the care team is aware of the individual’s goals.

How to support people following bereavement

Initially, just being there can be a comfort. The person may not feel like talking but may accept an arm around the shoulder or holding their hand. Accept their emotions, including denial, but do not collude and give false hope. A person who is agitated and may express anger can be difficult to respond to. Do not take their anger personally. Accept and acknowledge the emotion and try to encourage them to talk about what is making them angry. Let them repeat what they have said and go over the same issues, memories, etc., again and again if that gives them comfort.

Let the person talk about the loved one. Talk about the person yourself. The bereaved person may feel that they have someone to share the deceased person’s memory with.

When the person is in the disorganization and despair stage, they will need support to progress at their own pace. Listen to the person and encourage them to talk about how the loss has affected them. Explore whether they have a good support system - friends, family, etc., as trying to deal with their grief alone will only compound their feelings of loss and isolation. Give positive feedback - tell the person if you feel they are making progress.

Try and encourage them to look at positive aspects of their progress and their life, so they see they have something to look forward to, to live for. This will engender hope for the future. If you have concerns about the person, e.g. they are depressed or they are slipping backwards in the grieving process, there are many charitable agencies or professional counsellors who can support the bereaved.

The phases of bereavement

The Phases of Grieving (Colin Murray Parkes)

Grief work

Grief work is the way experts describe the process of ‘working through’ grief.

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The stages of grieving as described by Colin Murray Parkes include:

Phase 1

□ Numbness – the person is stunned by their loss, and reports feeling numb

- not able to react or function

□ Agitation – the person is unable to settle, relax or concentrate and may have difficulty sleeping.

Phase 2

□ Pining and searching.

The bereaved person will be occupied with thoughts of the person they have lost. They will miss them terribly and be desperate to see them – pining. They then may begin to search for the person, not necessarily in a physical sense but search for memories or reminders. They may go to places they have been together, visit the graveside frequently or even feel they hear or see the person themselves.

Phase 3

□ Disorganisation and despair.

This is the stage when realisation hits the person and they give up searching. They may lose hope and become depressed. At this stage, they may be unable to move forward and carry on with their daily activities.

Phase 4

□ Reorganisation.

Reorganisation or resolution is a way of describing how the person adapts to life without their loved one. It does not mean that their life will ever be the same again, but they gradually become less shocked and depressed as time passes. They return to previous or new interests and become more hopeful for the future. They are overcoming their grief and viewing their loved one with fond memories. The purpose of grief work is to adjust to their loss and not forget and get over it.

Ways to support a person during the various stages of their bereavement

It is important that you support the bereaved in a number of ways:

□ Emotionally – listening, showing empathy and giving people time and space to express their feelings. Show concern and compassion. An arm around the shoulder or holding their hand, if their body language suggests it’s okay to do so

□ Practical – you can do some practical things immediately. Making refreshments, contacting people, arranging transport and phoning other family members, etc.

□ Informational – give advice and factual information, tailored to meet the person’s needs

□ Spiritual – a peaceful atmosphere is essential. Respect the person’s beliefs and ensure they have access to a minister of religion.

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Supporting individuals who have suffered loss

Most of the support that people receive after a loss comes from family and friends. Doctors and nurses may also be a great source of support. For people who have trouble in coping with their loss, grief counselling may be necessary. Individuals may turn to you for support following the death of their loved one. It is essential to realise what you can do in order to help the individual and to recognise circumstances when you may need to refer them to other professionals within the health care team. If you are a more experienced part of the care team, you may be in a position to identify colleagues who may require and benefit from your knowledge and support. It is also very important that individuals receive training to help them to understand bereavement and grief, and how best to support the person through this process.

There should be a private area where individuals can sit after the death, with the support of a member of staff. At this time, it may be helpful to offer to telephone other family and friends if needed. The bereaved must not feel rushed or abandoned. They may feel frightened and not wish to be left alone or may not wish for anyone else to ‘intrude’ on their grief. They must be permitted to view or touch the body (if there are no contraindications) and must be given time to say their final goodbye.

The support that you could offer individuals following the loss of a loved one could be achieved by:

Providing comfort and support Acknowledgement and discussion

Providing a private area of faith-based procedures, wishes

Listening and preferences

Recognising individuals’ rights Having a knowledge of legal and requests processes

Treating the bereaved with Giving information with regard to respect and sensitivity the management of the

deceased Referring them for bereavement person, e.g. viewing, burial,

counselling cremation, documentation.

It is important that each member of the health care team recognises his or her role, and that care and support is established at this time when the individual is traumatised, unhappy and extremely vulnerable. The overall aim in supporting individuals through the grieving process is to assist them in reaching a point where their lives seem worth living once again.

If the death has taken place in an environment where there are other people, the staff should be aware that the death may well affect them too. It is essential that staff recognise the signs of grieving, in order to respond to these individuals too. The bereaved may need additional support following their loss and this can be arranged by care staff. Support may include:

□ Bereavement counsellors

□ Social services

□ Charitable organisations.

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Ways in which group care settings can mark the life and death of an individual

In a group setting, such as a care home or hospice, it is important that death is not ignored and that the death of a client is marked in some way and the significance of their life is acknowledged publicly:

□ Light a candle

□ Respecting a minute’s silence

□ Saying a prayer

□ Opening a book of remembrance/condolence

□ Memorial service – even if informal or small.

Funeral services, ‘wakes’ and memorials also help to deal with the emotions associated with the process of grief and mourning.

How to manage own feelings of loss and grief when working in end of life care

Cumulative grief

This occurs when there is unresolved grief from a number of bereavement experiences which accumulate and act upon the person to cause a deep feeling of bereavement. This can totally incapacitate the person and lead to anxiety and depression. Health care workers in palliative care are amongst those who may experience cumulative grief.

Ways to manage own feelings of loss and grief when working in end of life care

In settings such as palliative care, it can sometimes be difficult to take into consideration your own feelings. Your feelings may seem unimportant as you support people who are dying and the bereaved on a daily basis. Acknowledging your own grief and stress may make you feel guilty - that it is not you who should feel this way. However, to avoid excess stress and burnout, you must look after your own well-being:

□ Take time out – discuss with your manager about having a designated quiet area you and other staff can go for time to yourself. You need to be clear about when this is appropriate and the procedures for letting others know where you are and how long you will be gone. Taking time out at home may be helpful too

□ Discuss your feelings with others – colleagues, friends, family (ensuring confidentiality). Your manager may be able to arrange a support group within your care setting. You should be aware of counselling services, help lines, groups, etc.

□ Grieve losses – acknowledge grief, cry if you want to (not in front of family), talk over grief with colleagues, mark the person’s life

□ Try to find ways to relax whilst away from work – this will help you to reduce stress

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□ Rewarding oneself - give yourself little treats and do what you enjoy. Never feel guilty because those you care for are going through suffering and you feel you shouldn’t enjoy yourself. Improving everybody’s quality of life is important and that includes you

□ Be aware of your own limitations – you are not expected to know everything and cope with every situation. Know your limits and ask for support.

Never doubt the importance of the job you are doing and the difference you make to people’s lives and their death. Palliative care is a vital part of any care setting where end of life care is needed and should be given the highest priority.

Ways in which the support of others can help manage own feelings of loss and grief

Care staff should never be made to feel that they are being ‘unprofessional’ by showing signs of grief. If they hide their grief, they are in danger of becoming ‘burnt out’, where the stress of dealing with the aspects of palliative care are unsupported and the person suffers stress, anxiety and loss of motivation which affects their person and professional life.

There should be provision within your care organization for staff to discuss and work through their grief. Referral to professional agencies should be available for a staff member if it is giving cause for concern.

Conclusion

This module has explored the concept of loss and grief, defining the various terms and suggesting ways in which carers can manage their own grief and also that of others. Different theories of grief have been explained and the learner can now identify their own role in supporting themselves and others through this process. The learner can also identify and explain the different types of things that a person who is at the end of their life can grieve for, describing the sense of loss they may experience in many areas of their life.