Following up the Bereaved

Key points

  • Most bereaved people do not require counselling or specialist support. Be aware that simple reassurance, acknowledgment of their loss, and access to information may be all that is required. 
  • Identify those factors contributing to resilience during bereavement.  Resilient people tend to:
    • Make use of their experiences of previous losses
    • Make family and community connections
    • Draw on religious, spiritual, and social resources for comfort and support
    • Be able to make sense of their loss, and accept death.
  • Recognise reactions that are commonly seen as part of normal grief, which include:
    • Physical:
      • Hollowness in stomach; tightness in the throat or chest; over-sensitivity to noise; sense of de-personalisation;  breathlessness, dry mouth; muscle weakness, lack of energy
    • Behavioural:
      • Crying, sighing; sleep disturbance; restlessness and over-activity; appetite disturbances; absentmindedness; social withdrawal; dreams of the deceased; avoiding reminders; searching and calling out; visiting places associated with the deceased; carrying reminders
    • Mental:
      • Disbelief; confusion; preoccupation
    • Emotional:
      • Anxiety; fear; sadness; anger; guilt; inadequacy; hurt; relief; loneliness.
  • Be aware that bereavement is known to have a significant impact on the health of surviving family members, and is associated with increases in mortality. Issues to consider include:
    • Clinicially significant depression (may occur in 10-20% of bereaved people)
    • Sleep problems and fatigue
    • Worsening memory
    • Alcohol use
    • Changed social circumstances can affecting the bereaved person’s physical activity levels, nutritional status, and self-management of chronic health problems
    • Social isolation and changes in work and other important relationships.
  • In the first months of bereavement, mortality appears to be mostly due to accidental and violent deaths including suicide, alcohol related deaths, and an increase in deaths from ischaemic heart disease.
  • Although the use of medications and medical services often increases in the bereavement period, the most at risk patients may not seek medical assistance.
  • Risk factors in bereavement may include:
    • Situational Risk Factors:
      • Sudden death; death of a child; traumatic death; preventable death; overly prolonged dying; absence of body
    • Individual Risk Factors:
      • Past history of psychiatric illness; previous depression; alcohol or drug abuse, eating disorders; concurrent crises; gender; religious beliefs; low self-esteem
    • Inter-personal risk factors:
      • Centrality of the relationship with the deceased; decreased role diversity; lack of social support; ambivalence; unavailability of social and emotional support from family and friends.
  • Be aware of the phenomenon of disenfranchised grief: ie, grief related to a loss that is not, or cannot, be openly acknowledged, publicly mourned, or socially supported.  
    • Situations where this may occur include death from a stigmatising illness eg, HIV AIDS, of a partner from an ex-marital affair, death of a former spouse, or sometimes after death by suicide.
  • Consider possible strategies to actively follow up the recently bereaved, such as:
    • The offer of an appointment to talk about what happened with a GP; this may be appreciated, particularly if the GP cared for both deceased and bereaved
    • Flagging bereaved patients for the practice nurse to contact by a phone call with an offer of a check up may be appropriate
    • When a bereaved person attends the clinic, offer to review their overall health status and all active medical conditions.
  • It is important to identify bereaved persons who need specialist support. A small proportion may be at risk for prolonged grief disorder (PGD):
    • PGD is defined as a grief response that persists beyond 12 months following the loss
    • Occurs in approximately 5-10% of bereaved individuals
    • Is characterised by unremitting and disabling yearning for the deceased, distress, disengagement and functional impairment
    • Can be distinguished from normal grief, depression and post-traumatic stress disorders
  • Symptoms include:
    • Separation distress, such as longing and searching for the deceased, loneliness, preoccupation with thoughts of the deceased
    • Symptoms of traumatic distress, such as feelings of disbelief, mistrust, anger, shock, detachment from others, and experiencing somatic symptoms of the deceased.
  • Patients who request help for themselves or a family member should be referred for specialist bereavement support.
  • Exacerbation of pre-existing mental health problems can occur. Major depression and post-traumatic stress disorder can occur in bereaved patients, and should be distinguished from complicated bereavement.

Overview - Systematic review of the literature on complicated grief

A systematic review of the literature on complicated grief
This review by leading Australian bereavement researchers provides a summary of the background to the concepts of complicated grief, its risk factors, the tools that are used to assess it, and its relationship with other psychiatric disorders.

Ref: Kristjanson L, Lobb L, Aoun S, Monterosso L. A systematic review of the literature on complicated grief. Perth: Australian Government Department of Health and Ageing. 2006:117pp.
From: WA Centre for Cancer & Palliative Care, Edith Cowan University


Debate - Why Prolonged Grief Disorder Should be Listed as a Mental Disorder

Discussion of the current status of PGD in DSM-5

Why Prolonged Grief Disorder Should be Listed as a Mental Disorder
PGD has been a controversial diagnosis prior to its inclusion in the most recent edition of the Diagnostic and Statistical Manual of the American Psychiatric Association.  This article is by Richard Bryant, Professor & Director of Traumatic Stress Clinic at UNSW Australia, who discusses the debate, and the emerging understanding about treatment options for PGD.

Ref: Bryant R. Why Prolonged Grief Disorder Should be Listed as a Mental Disorder [Internet]. The Conversation; 2012 Oct 26 [cited 2015 Mar 6].


Video - Disenfranchised grief: Dr Ken Doka

Disenfranchised grief: Dr. Ken Doka
In this interview, Dr Ken Doka talks about his research on disenfranchised grief, describes who is affected by it, and discusses the implications for the people who are affected.

Ref: Springer Publishing Company. Disenfranchised grief: Dr. Ken Doka [Video]. Springer Publishing Company; 2013 Oct 4.


Standards - Evidence based model for providing bereavement support

Bereavement support standards for specialist palliative care services
Useful for GPs to be aware of what bereavement support may typically be offered to their patients by palliative care. Based on current understandings of bereavement, this document suggests a bereavement support pathway and standards for use by palliative care services, including the timing of assessments and interventions

Ref: Hall C, Hudson P, Boughey A. Bereavement support standards for specialist palliative care services. Melbourne: Department of Health, State Government of Victoria; 2012 Nov.


Identifying support for the bereaved

Services and information
  • CanTeen is the Australian organisation for young people living with cancer. www.canteen.org.au
  • Kids Help Line offers support and resources to children.
    1800 55 1800
    www.kidshelpline.com.au
  • Lifeline provides online support and suicide prevention services.
    13 11 14
    www.lifeline.org.au
  • MensLine Australia is a professional telephone and online support, information and referral service, helping men to deal with relationship problems in a practical and effective way.
    1300 78 99 78
    www.mensline.org.au
  • riprap is a website for kids coping with a parent who has cancer
    www.riprap.org.uk

Resources for the Bereaved

Last updated 21 February 2017