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Chapter 10: Care of the Family / Carer, Colleagues and Self

Learning objectives for this chapter

By the end of this chapter, we would like you:

-To define the concepts of loss, suffering, grief and bereavement.

-To explain the factors impacting the experience of loss, suffering, grief and bereavement.

-To list the stages of grief through which a person may transition.

-To identify normal and healthy, versus complicated and pathological, grief.

-To explain grief and bereavement support strategies and resources appropriate for use when working with families / carers / significant others in palliative care settings.

-To explain grief and bereavement support strategies and resources which may be used to support nurses and other health professionals in palliative care settings.

Loss, suffering, grief and bereavement

Loss, suffering, grief and bereavement are commonly encountered by nurses working in palliative care, their patients, patients' families / carers / significant others, and their colleagues. Consider the following definitions:

  • Loss is being deprived of something. In palliative care settings, people may experience actual and / or potential losses related to health, function, roles, relationships and, eventually, life.
  • Suffering is pain, distress or hardship. It may negatively impact a person's body, mind and / or spirit, and may be acute or chronic.
  • Grief is deep mental anguish that may arise from loss. Grief may impact negatively on a person's body, mind and / or spirit, as below:

Physical Responses to Grief

Psychological Responses to Grief

Spiritual / Sociocultural Responses to Grief

  • Crying.
  • Cognitive issues (e.g. difficulties making decisions).
  • Insomnia.
  • Loss of appetite, weight loss.
  • Fatigue.
  • Shortness of breath, heart palpitations.
  • Greater susceptibility to illness.
  • Nervousness, restlessness.
  • Depression, anxiety.
  • Guilt, self-reproach.
  • Anger, hostility.
  • Low self-esteem.
  • Feelings of helplessness and hopelessness.
  • Sense of unreality.
  • Interpersonal / relationship problems.
  • Ambivalence about the death. 
  • Spiritual pain, suffering, loneliness.
  • Fear of a higher power, the unknown and / or the future.
  • Feelings of unfairness, anger.
  • Loss of transcendence.
  • Search for meaning.
  • Need for love, hope.
  • Beliefs related to afterlife.
  • Death-related rituals.

A person's experience of grief is impacted by factors such as:

  • The perceived significance of the loss, and relationship with the deceased.
  • The person's coping strategies and behaviours.
  • The person's level of age and maturity.
  • The person's previous experience with death and loss.
  • Circumstances related to the death.
  • Whether the death was sudden or anticipated.
  • Additional stresses or crises associated with the death.
  • The person's level of support.
  • The person's religious and sociocultural backgrounds.

Grief may also occur in response to anticipated loss. This is anticipatory grief.

  • Bereavement is a strong emotional response to suffering a loss. It is a major life event; a person must be supported.

Bereavement involves 'letting go' of the person who has died. This includes four distinct processes: (1) a shift in the person's thinking in relation to the deceased patient, (2) recognition of the patient's death, (3) acknowledging the physical and emotional loss that has occurred, and (4) engaging in a healthy grieving process. Nurses should support people to realise that 'letting go' does not mean 'forgetting' the person; rather, it means 'accepting' this fact, and continuing to live a meaningful and fulfilling life.

A patient may also experience loss, suffering, grief and bereavement in relation to their own death. Psychological support is a crucial consideration.

Stages of grief

Grief is a highly subjective experience, and that each person will transition through a grief process in a different way. People typically transition through five phases of grief. These phases are:

  1. Denial: shock and disbelief at the death.
  2. Anger: becoming angry that the death has occurred.
  3. Bargaining: wishing to postpone or reverse the death.
  4. Depression: feelings of guilt or sadness.
  5. Acceptance: beginning to learn to cope with the death.

A person may not experience the phases in order, and may not experience all the phases.

Normal versus pathological or complicated grief

People may not transition through the grief process properly - grief may become pathological and / or complicated. Grief becomes severe, to the extent that it is problematic, and may enter clinical depression.

There are three basic types of pathological or complicated grief reactions:

  • Delayed grief: grief in relation to a death which occurred some time previously.
  • Inhibited grief: a person never grieves a death or other loss.
  • Chronic grief: grieving is unending, and the intense emotions never relent. This often occurs when a person has no opportunities to speak about, and come to terms with, their loss.

It is difficult to identify people who are at risk of developing pathological or complicated grief. Generally, people at increased risk are those who:

  • Have poor wellbeing prior to the loss - particularly if they have pre-existing or poorly-managed mental illness.
  • Are male - men are at greater risk of pathological or complicated grief because men are often expected to be stoic, and may not be able to grieve properly.
  • Are poorly supported, or lack strong social or cultural networks.
  • Experience death which is unexpected, untimely or traumatic,
  • Have dysfunctional coping strategies.
  • Self-medicate with medication or alcohol.
  • Fail to view the deceased person's body, if they consider this important.
  • Deny, or fail to accept, that the death has occurred.

Grief and bereavement support for families / carers / significant others

In supporting others through experiences of grief and bereavement, palliative care nurses have three fundamental roles: (1) assessing each person's grief, (2) assisting the person with issues and concerns, and (3) providing referral and support options.

There are a range of bereavement care and support services available. These include:

  • General practitioners and community nurses
  • Mental health services
  • Counselling services
  • Peer bereavement support groups
  • Specialist services (e.g. grief related to the death of a child, parent, etc.)
  • Services provided by hospitals, community health centres, palliative care agencies, volunteer groups and church / religious organisations.

Nurses should inform people of the grief support systems and bereavement care services available. Nurses should be familiar with the services available.

Nurses should also become comfortable talking with people about death and their associated emotions. This includes using communication strategies such as:

  • Telling the person they are sorry for their loss, in a genuine way.
  • Acknowledging that they cannot possibly imagine how the person is feeling.
  • Asking about the person's loved one, if they wish to reminisce.
  • Asking the person what they need.
  • Helping the person to connect with those who can support them.
  • Asking the person if they wish to speak with the patient's doctor or care team.
  • Discussing with the person how / if they want to spend time with the patient.
  • Making the goodbye comfortable by explaining to the person what they will see.
  • Offer 'memory making' options.
  • Answer the person's questions about what happens next to the patient, and other questions.
  • Acknowledging that they do not know what to say, if this is the case.
  • Giving the person space, if this is what is required.
  • Avoid judgement in relation to the way the family expresses their grief.

Nurses should avoid saying the following:

  • "I know how you feel" - because they do not.
  • "He / she is in a better place now" - this may not be consistent with the person's religious or spiritual beliefs, and it may enhance the person's sense of loss.
  • "It will get easier over time" - although this is often the case, a person may see this as impossible and they may fear losing memories of the patient.
  • "Everything happens for a reason" - though some people take comfort in the idea of a 'greater plan', death causes many people to question their religious / spiritual beliefs.
  • "Don't cry" or "You need to be strong" - as part of their grieving process, some people must cry and they should be encouraged to do so.

Nurses can use active listening. This involves listening fully to the person with the aim of identifying, understanding and acknowledging the (often subtle) message/s they are communicating. The nurse should engage with the person by facing them, maintaining eye contact and mimicking their body language (as appropriate).

Children from above the age of approximately 6 months experience loss, suffering, grief and bereavement just as acutely as do adults. Children under the age of 5 years frequently see death as reversible and magical. Children may also have significant worries about who will care for them and / or that remaining caregivers will also die or leave them. Children who experience loss, suffering, grief and bereavement need continuous support and comfort. Caregivers should provide honest and realistic information, acknowledging the child's sadness and encouraging the child to express this. Children should be encouraged to participate in death rituals if they wish to do so, and to use strategies to remember their loved one. The child's environment should be stable and structured, with normal routines followed to the greatest extent possible.

Palliative care services should consider following up people who have experienced grief and bereavement. This may include formal activities, or informal activities - such as follow-up telephone calls from a trusted carer to see how a person is coping.

Grief and bereavement support for colleagues and self

Nurses should maintain composure when caring for a person at the end-of-life, and during their death. However, good palliative care requires nurses to emotionally engage - and this can lead to loss, suffering, grief and bereavement.

Nurses should identify and reflect on their own emotional responses to death. Understanding these ensures you will be more prepared for the death of a patient. This will aid in caring for patients, their family / carers / significant others, your colleagues and yourself.

Debriefing can support staff in managing grief. This involves sharing information about, and emotions related to, a significant event or critical incident. This allows better understanding of how they handled the event. Debriefing sessions also allow colleagues to come to terms with the event in a safe and understanding space, support each other and to share coping strategies. Nurses should familiarise themselves with the debriefing opportunities available.

Nurses should recognise and acknowledge their colleagues' experiences of loss and grief, and encourage them to share their emotions and concerns; listening and responding in a non-judgemental way. As a part of debriefing, nurses may consider:

  • Recognising the loss of a patient (e.g. by placing a photograph next to a vase of flowers, or creating an entry in a memory book, etc.).
  • Supporting attendance at funerals / memorial services (with the family's permission).
  • Organising policies and procedures to inform off-duty staff of the death of a patient.
  • Promoting open discussion, reflection and sharing of information.
  • Participating in education and training to improve services.

Regular exercise, good nutrition, diversional activities, relaxation strategies and focusing on positives are all important strategies. Nurses may find solace from engaging in religious or spiritual services, and should take regular, scheduled breaks from palliative care.

Nurses in palliative care are at risk of complex grief. Over time, multiple losses and poor support can take a significant emotional toll. Spending large amounts of time around others who are grieving, and dealing with complex ethical issues associated with the end of life, can also have a detrimental impact on a nurse's emotional wellbeing. Nurses who are at increased risk of experiencing complicated grief are those who:

  • Have long, close relationships with the deceased.
  • Witness deaths which are distressing.
  • Lack knowledge / skills / confidence in delivering high-quality palliative care, or in discussing death and dying.
  • Lack a psychologically-supportive work environment.
  • Experience other work-related stresses (e.g. time pressure, workload, etc.).
  • Have had previous difficult grief / bereavement experiences and / or accumulated grief.
  • Experience stress or other challenges in their personal life.

There are many signs which indicate that a nurse may be having difficulty coping. These signs include:

  • Psychological signs: anxiety and / or depression; disproportionate worry, insecurity; insomnia; difficulty concentrating and making decisions; substance use (i.e. self-medicating); over-indulging in food; withdrawal from social contact; loss of interest in work, and a decreased quality of work; an irrational fear of death and dying, etc.
  • Physical signs: generalised aches; immune-compromise and chronic illness / infection; gastrointestinal upsets; hypertension, skin problems, etc.

Where a nurse identifies that they are having difficulty coping with grief and other complex emotions, they must inform their supervisor and other appropriate persons. Support should be provided, including skills to enable the nurse to manage grief in a healthy way.

Conclusion

Nurses should recognise that loss, suffering, grief and bereavement are normal, universal experiences in response to a person's death. Nurses will observe these issues in the patients for whom they care, in their families / carers / significant others, in their colleagues and in themselves. In this chapter, you have studied a variety of strategies you may use to effectively manage loss, suffering, grief and bereavement in patients' families / carers / significant others, in your colleagues, and in yourself, and how to promote emotional wellbeing among those in the palliative care context.


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