Loss, Grief and Bereavement

Helping people adapt to loss from diagnosis to after a death

Loss is a universal part of the experience of life-limiting illness, as people with advanced illness, their families, carers, and friends adapt to many changes. Just as the person may face a great burden of change and loss, so can family and friends. Close relationships involve strong bonds of affection, and the loss or threatened loss of these generates grief and mourning.

Definition

Loss in advanced illness can include loss of a sense of a healthy body and personal control, family role, future plans and goals, employment, function, or hope. Each loss is valued differently and ranges from no or little value to great value.

Related Resources

CareSearch GP Hub – Bereavement
CareSearch Clinical Evidence – Grief and bereavement
palliAGED Practice Tip Sheet – Care Coordination
CareSearch Community Section – Bereavement, Grief and Loss

Grief or mourning is a response to loss. It can affect every part of life including thoughts, behaviours, beliefs, feelings, physical health, and relationships with others. This may be referred to as uncomplicated grief as it is a normal reaction to a loss.

Anticipatory grief is the grieving prior to loss. It can include grief for the loss of identity, the loss of future plans, or the diminishing relationship with the person as their health deteriorates.

Bereavement is the period of grieving experienced by family and friends in response to the death of someone close to them.

Complicated and prolonged grief are terms for a prolonged, intense response to bereavement that negatively affects a person’s life including their relationships and employment.

Disenfranchised grief describes a grief reaction where there is no social recognition that the person has the right to grieve or receive social sympathy or support. A few examples of this include a griever from an unrecognised formal relationship (e.g. mistress, estranged family, stepfamily), where the griever has an intellectual disability, or when the death is from an illness with a social stigma (e.g. dementia in some cultures).

Everyone grieves in their own way; there is no right or wrong way or time to grieve.

Having social support networks including family, friends, neighbours, community networks or pastoral care may help a person who is grieving.

As a good introduction to this topic, watch this presentation ‘Loss, Grief and Bereavement’ from the Agency for Clinical Innovation by Prof Liz Lobb who explains key terminology, discusses normal grief, risk factors and models of bereavement counselling.

Watch Loss, Grief and Bereavement, a video from The Agency for Clinical Innovation

Watch the video Loss, Grief and Bereavement

What you can do

Nurses can play an important role by recognising the needs related to grief and loss of people with advanced illness, family members and carers, and providing support to them. This may be offering support and reassurance; helping them adapt to losses after the diagnosis, as the illness progresses, and in the final day and hours; and support for the family after the death.

Recognise
Feelings of grief and loss can affect a person’s physical health or mental wellbeing.

Symptoms of grief usually fluctuate and become less acute over the following weeks to months. However, symptoms may recur at times such as anniversary dates and other reminders, and other losses. The time frame of ‘uncomplicated grief’ is debated and can reflect cultural and social factors.

Most people who experience grief do not require specialist counselling, but benefit from reassurance, acknowledgement of their losses, and access to information. A small number of people experience ongoing or ‘complicated grief’.

Recognise reactions that are common in normal grief. These include:
- Physical:
  - hollowness in stomach, tightness in the throat or chest, over-sensitivity to noise, loss of appetite, breathlessness, dry mouth, muscle weakness, lack of energy, susceptibility to illness.
- Behavioural:
  - crying, sighing, sleep disturbance, over- or under-activity, absentmindedness, social withdrawal, dreams of the deceased, avoiding reminders, searching and calling out, visiting places associated with the deceased, carrying reminders.
- Cognitive:
  - disbelief, denial, confusion, preoccupation.
- Emotional:
  - Anxiety, fear, sadness, anger, guilt, inadequacy, hurt, relief, loneliness.
Assess

There is a lack of evidence to support systematic assessment of all people recently bereaved for grief.
Sometimes it is difficult to distinguish depression from grief. If relevant, you can use the Canadian BC Guidelines Tool to distinguish depression from normal grief.

Consider seeking specialist advice when there is concern about complicated grief, depression, or persistent difficulties despite supportive counselling.

A subset of people experience extreme and disabling grief often referred to as ‘complicated grief’ and ‘prolonged grief disorder’. Complicated grief is characterised by a yearning and longing for the deceased that has a significant, negative, and long-lasting impacts on a person’s relationships, employment, and life.
There is no clear consensus about how screening and assessment for the development of prolonged bereavement should be performed by palliative care services.
Manage
Nurses can offer support and reassurance to people with advanced illness, their family members and carers, helping them adapt to losses all the way from diagnosis through deterioration to the point of death; and supporting the family after the death.

Good quality bereavement care includes communicating with the family and providing support to them when the person is dying; this can impact positively on bereavement after the person has died.

Formal bereavement support programs are a key component of most specialist palliative care services. These are usually provided by a multidisciplinary team of nurse, social workers, counsellors, doctors, and chaplains.

It might also help the person if nurses:
- recognise that for some people, grief may be accompanied by feelings of relief and freedom along with guilt over having these feelings.
- acknowledge the loss and their feelings and take time to listen to their experience and feelings. When a person is talking about a loss, they may not need answers or advice; listening to them may give the greatest comfort.
- ask about their main concerns for themself or others (e.g. children, siblings) and other current stressors (e.g. other losses, caring responsibilities, financial strain).
- provide information and reassurance about grief.
- recognise that someone may benefit from financial support at this time. In this case, you can direct them to the Australian Government page on What help there is when an adult dies.
- acknowledge that the bereaved often are exhausted from caring for the deceased. You can suggest that the bereaved person meets their GP particularly if the GP knows them well.
- encourage them to identify and use their support networks.

References
This information was drawn from the following resources:
1. Corless IB, Meisenhelder JB. Bereavement [Internet]. In: Ferrell BR, Paice JA, editors. Oxford textbook of palliative nursing. 5th ed. Oxford: Oxford University Press; 2019. [cited 2022 Aug 8].
2. Dodd A, Guerin S, Delaney S, Dodd P. Complicated grief: Knowledge, attitudes, skills and training of mental health professionals: A systematic review. Patient Educ Couns. 2017 Aug;100(8):1447-1458. doi: 10.1016/j.pec.2017.03.010. Epub 2017 Mar 6.
3. Egan C. How do we farewell an aged care resident after they die? [Internet]. 2019 Feb 27. [cited 2022 Aug 8].
4. Lundorff M, Holmgren H, Zachariae R, Farver-Vestergaard I, O’Connor M. Prevalence of prolonged grief disorder in adult bereavement: A systematic review and meta-analysis. J Affect Disord. 2017 Apr 1;212:138-149. doi: 10.1016/j.jad.2017.01.030. Epub 2017 Jan 23.
5. Therapeutic Guidelines Limited. Loss, grief and bereavement [Internet]. 2016. [updated 2016 Jul; cited 2022 Aug 8].
6. Bereavement. In: Watson MS, Ward S, Vallath N, Wells J, Campbell R, editors. Oxford Handbook of Palliative Care. 3rd ed. Oxford: Oxford University Press; 2019.
7. Whalley M, Kaur H. Grief, loss, and bereavement [Internet]. 2020. [cited 2022 Aug 8].