Essential Component 9
There is support for people experiencing
loss and grief

Grief is a normal response to loss and can affect all parts of your life

Why is this an Essential Component?

Evidence for inclusion

Supporting people through loss and grief is an essential component of care for people approaching and reaching the end of their lives, their families and carers.

Grief is a normal and inevitable response to loss, and can affect every part of a person’s life (ACGB, 2014)[1]. Grief occurs within social and cultural contexts in which it takes place.

Bereavement – the loss of a loved one through death – is a normal, common human experience. Although it is associated with a period of acute suffering, most people adapt to their loss over time (Stroebe et al, 2007)[2].

Grief and bereavement support encompasses the 'entire experience of family members and friends in the anticipation, death, and subsequent adjustment to living following the death of a loved one' (Christ et al, 2003)[3].

To deliver the highest standard of care there is a requirement to ensure that the patient, their family carers have access to bereavement care, information and support services.

Most people who experience grief do not require specialist counselling, but would benefit from reassurance and acknowledgement of their losses, and access to information.

Care providers across all settings can play a role in supporting families and carers through their loss and grief.

Intended beneficial outcomes

  • Grief and bereavement support is available.
  • Family members, carers and significant others are supported as they grieve.
  • Care providers across all settings are supported and resourced to support carers and families through their loss and grief.
  • Bereavement services are recognised as an essential component of care to family and carers.
  • Bereavement services are resourced and are a routine part of palliative and end of life care.
  • There are models and guidelines to support best practice in bereavement services including bereavement risk assessments.
  • There are partnerships with a range of community organisations able to support people who are anticipating or living with loss.
Grief is a normal response to loss and can affect all parts of your life

What tools/resources could support the implementation of this component?

The Agency for Clinical Innovation conducted a review of the tools and resources supporting this component in 2021. The review identified local, national and international tools and resources that could be used to support the implement this essential component. None are specifically recommended or advised to be used in preference over another.

Click the Acknowledgement button below to view the working group members involved in the latest review.

Working group members

Name

Role/Organisation

Prof Liz Lobb

Professor of Palliative Care (Allied Health), Calvary Health Care Kogarah, ACI Palliative Care Network Executive Committee

Working Group Lead

Dr Pippa Blackburn

Clinical Service Manager, Illawarra Shoalhaven LHD

Mary Bryant

Manager Bereavement Counselling, St. Vincent’s Hospital

Meera Henry

Social Worker and Bereavement Coordinator with Specialist Palliative Care Team, Coffs Harbour MNCLHD

Geneen Reyna

Bereavement Counsellor, Far West LHD

Bridget Garrard

Clinical Nurse Consultant, Northern Sydney Home Nursing Service, Northern Sydney LHD

Dr Louis Christie

Palliative Care Senior Medical Officer, Western NSW LHD

Helen Smith

Nurse Practitioner, Silverchain Western Sydney LHD

Kristen Bindley

Bereavement Counsellor. Western Sydney LHD

Michael Dash

Bereavement Coordinators Group, Sydney LHD

Christine Lowe

Consumer Advocate/End of Life Community Volunteer, Compassionate Communities Northern Beaches

Close acknowledgements

Carers

A BIG LIST of death literacy, planning and conversation tools

A directory of electronic and multimedia resources for patients, carers and community members around death literacy, advance care planning and communication tools developed by Groundswell.

Carer Gateway – planning for the end of life

An Australian Government resource to support people caring for someone who is approaching end of life.  Helpful practical information and support for carers of people at end of life, as well as links to useful organisations and websites. 

Caring for someone with a life-limiting illness: Bereavement – caring doesn’t stop when a life ends

A Carers NSW resource providing information and support to carers, including those who are caring for someone with a life-limiting illness.

Caring@home

Use the caring@home resources to support home-based consumers and their carers. They also help providers meet Aged Care Quality Standards #1,2,3,7 & 8 and the Charter of Aged Care Rights. The resources are free, evidence-based and facilitate high-value care; they support person-centred outcomes and improve service performance efficiency and effectiveness 

Dementia - taking care of carers

A Better Health Victoria resource designed to support carers of someone with dementia.

Palliative Care Australia – carer resources

A directory of resources for patients, carers, community members and health professionals in palliative and end-of-life care.

Core resources

Bereavement Support Standards for Specialist Palliative Care Services

Victorian service standards developed through consultations, surveys, review of international evidence on the impact of bereavement and bereavement intervention and adapted to key Australian standards and guidelines such as Standards for bereavement support programs (Australian Centre for Grief and Bereavement 2001) and Clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients (Hudson et al. 2010).

National Palliative Care Standards

The Standards (2018, 5th edition) has been developed to support specialist palliative care services as they work to ensure that the people they serve have access to the highest quality of care as they approach and reach the end of life.

NSW Local Health District Bereavement Resources

Please check for local bereavement resources.

Assessment and evaluation tools

Choosing and using assessment and evaluation tools in bereavement services: A guide

The guide provides information to help service managers and practitioners choose appropriate assessment and evaluation tools, including outcome measures, along with recommendations on best practice for their use. The Guide has been produced by the Bereavement Evaluation Forum, a special interest group of the National Bereavement Alliance in 2019.

Guidance for bereavement needs assessment in palliative care

Published by Hospice UK (2010) the aim of this publication is to support the assessment of need for bereavement care in adults’ palliative care services; it is based on the assumption that practitioners are using the holistic, family-focused approach to care that is central to palliative care.

Dealing with practical matters after death

A guide to a social media afterlife

Palliative Care Australia have prepared this guide (2015) to demonstrate the different options for managing social media accounts across various platforms.

After Someone Dies

This resource developed by LawAccess NSW (2019) provides practical advice for families and carers about the things to do after someone dies.

Australian Death Notification Service (ADNS)

Australian Death Notification Service (ADNS) The ADNS provides people with a single online location to notify multiple organisations that someone has died.

Claim for a funeral benefit

Claim for a funeral benefit This link takes you to a form to claim a one-off payment to help cover funeral cost if the deceased is a Veteran (and in some cases their dependants) funded by the Department of Veterans Affairs.

Death and Bereavement - Service NSW

A guide developed by Service NSW provides a collection of transactions and links for financial, legal and administrative information after someone dies.

Death and Bereavement - Services Australia

A guide developed by Services Australia (2020) to help with practical matters after death such as payments, support and other services to help you when someone close to you dies.

Funerals

Fair Trading NSW provides practical information about funerals.

Paying for funerals: covering the costs of a funeral

A practical guide produced by Australian Securities and Investments Commission (ASIC) about options for paying for the costs of a funeral.

Plan your digital legacy

How to plan your or a loved ones digital presence after death. A resource developed by the eSafety Commission

What to do when someone dies

A guide developed by Services Australia (2020) for bereavement assistance, administrative tasks and responsibilities after someone dies that includes the following: following a death, registering a death, finalising an estate and looking after yourself.

Other tools and resources

Bereavement and Grief

CareSearch bereavement and grief resources (2021) for clinicians.

Following up the Bereaved

CareSearch resource provides guidance (2021) for clinicians for follow up support.

Grief Information Sheets

The Australian Centre for Grief and Bereavement have developed various bereavement factsheets (including COVID resources).

My Grief App

My Grief App is an online source for grief and bereavement support developed by The Australian Centre for Grief and Bereavement. It provides information, tools and resources to support bereaved people and also provides practical strategies for families and friends on how best to support someone in the midst of their bereavement.

Trauma, grief and loss resources

The Australian Institute of Family Studies have collated on one page a suite of weblinks to various trauma grief and loss resources.

Understanding Grief Within a Cultural Context

Grief information for people with cancer, their familiar and carers.

Understanding Your Grief

This brochure was developed by the NSW Clinical Excellence Commission (CEC) in 2016 as part of the Last Days of Life Toolkit.

Death of a child or young person

After the Loss of a Child: A resource for parents of children in palliative care

Looks at common issues and processes occurring both before and after the death of a child, and provides information and helpful tips for navigating the grief experience of parents and families.

Bereavement and loss from cancer

The Canteen website includes the following resources for young people and their siblings: • Getting help and support with loss • The emotional side of loss • Telling people • Changes in relationships after loss • Coping with anniversaries and celebrations • Dealing with practical issues after loss.

Footprints in the sand booklet

This resource has been developed by Bear Cottage and provides bereaved parents and families with practical information and emotional support after a child has died.

Mater Hospital, Sydney - Support Groups

The Mater Hospital Sydney offers free support groups for parents who have experienced the death of their baby, facilitated by Obstetric Social Workers. These include: • Bereavement Support group, • Pregnancy After Loss and • Parenting After Loss support group.

National Centre for Childhood Grief

This counselling support service specialises in childhood and sibling grief

Registration or payment See website for fee structure.

PENTHOS

Offers free specialist couple therapy for grieving parents – 16 week program.

Red Kite

Red Kite offers a helpline and resources for grieving individuals and families following the sudden and unexpected death of an infant or young child. Phone: 1800 REDKITE (Mon-Fri 9am-7pm)

Red Nose

Red Nose offers a helpline, online resources and financial support for grieving families following the death of a child to cancer.

The Compassionate Friends

Support and information for families following the death of a child.

General symptom assessment tools

Prolonged Grief Disorder [PG -13]

PG-13 is a diagnostic screening tool for PGD. A person who endorses experiences consistent with PGD are likely to benefit from specialised assessment by a mental health professional and treatment. The PG-13 was revised in 2021 to reflect contemporary understandings of PGD and incorporate more user-friendly language (PG-13R). PG-13 has been widely used in epidemiological and clinical research settings in western and non-western countries; however, there is a need for future research to confirm psycho-metric properties in more ethnically diverse populations. It may be used clinically as a screening tool or as part of a comprehensive assessment to help identify probable PGD. (2021) Prigerson, H. G., Boelen, P. A., Xu, J., Smith, K. V., & Maciejewski, P. K. (2021). Validation of the new DSM-5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World psychiatry : official journal of the World Psychiatric Association (WPA), 20(1), 96–106.

Support services

Beyond Blue

Beyond Blue provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.

Black Dog Institute

Black Dog Institute is a not-for-profit research institute that is dedicated to understanding, preventing and treating those with significant mental health challenges with a recent focus on suicide prevention, digital innovation, lived experience, youth and workplace mental health.

Cancer Council NSW

Cancer Council 6-week telephone support group. Phone: 1300 755 632 Email: tsg@nswcc.org.au

Griefline

Griefline is a free national helpline offering confidential telephone counselling 7 days a week, 365 days a year. Their website also has resources and moderated forums for the bereaved to access information. Phone: 1300 845 745 (6am-midnight, 7 days a week)

Headspace

Headspace is the National Youth Mental Health Foundation providing early intervention mental health services to 12-25 year olds. They provide information for health professionals, young people and families on their website. Headspace also have a number of centres around Australia for young people to visit in person. Online group chat text support.

Lifeline

Provides short-term, confidential one-to-one support for people who are feeling overwhelmed or having difficulty coping or staying safe. Phone: 13 11 14

National Association for Loss and Grief (NALAG)

Provides free loss and grief support face-to-face or via phone, support and education for communities, families and individuals impacted by loss, grief and trauma. Available in regional NSW.

NSW Bereavement Counselling Service Directory (October 2021)

This directory has been produced on behalf of the Bereavement Coordinators Network.

NSW Local Health District Bereavement Resources

Please check for local bereavement support services.

Solace Australia

Solace provides (peer/group) grief support for those grieving the death of their partner, with groups throughout Australia.

Aboriginal and Torres Strait Islander

A journey into sorry business

Aboriginal people refer to the period of cultural practices and protocols associated with death as Sorry Business. Sorry Business is an important time of mourning that involves responsibilities and obligations to attend funerals and participate in other cultural events, activities or ceremonies with the community. We value the importance of advance care planning yarning so this resource has been developed to provide culturally appropriate, respectful, and mindful information to encourage Aboriginal people in opening up conversations about their rights, wishes and how to plan ahead when circumstances change through life.

Aboriginal grief and loss training project

The Aboriginal Grief and Loss Training Project is funded by the Mental Health and Drug & Alcohol Office of NSW Health and delivered by the NSW Institute of Psychiatry. The Project aims to build the capacity of the NSW Aboriginal mental health workforce to support Aboriginal communities in dealing with grief and loss.

Aboriginal Health and Medical Research Council - Palliative Care Resource Centre

The My Journey to Dreaming Diary is a place for people to keep personal and medical information and includes mindful activities to prompt reflection, wellness, and gratitude. The Journey to dreaming toolkit has been developed to provide high quality information to help Aboriginal and Torres Strait Islander families and their healthcare workers provide family-centred palliative and end-of-life care.

Cultural consideration booklet

The Program of Experience in the Palliative Approach (PEPA) have developed this resource (2020) to provide information for healthcare services about what should be known and understood, that will enable healthcare providers to deliver the best cultural care during the end-of-life journey for Aboriginal peoples and Torres Strait Islander peoples. Outlines practical considerations for providing person-centered palliative care for Aboriginal peoples, Torres Strait Islander peoples and their respective families, while being respectful of intercultural variations and individual choices.

Grief and bereavement

Resource for health services providing advice on cultural practices and considerations after an Aboriginal person has died.

Grief and Loss: help for aboriginal people going through grief

Booklet published by the Aboriginal Health Council of South Australia 2015.

Grief, loss and trauma

Grief, loss and trauma and its impact on Aboriginal and Torres Strait Islander communities. Resource for health services providing advice on cultural practices and considerations after an Aboriginal person has died.

Gwandalan Project – e-learning modules

These e-learning modules explore aspects of Aboriginal and Torres Strait Islander history and culture relevant to the palliative and end-of-life care journey, and the commonly practiced cultural protocols associated with returning to spirit (death and dying). It will support health professionals to provide more impactful, meaningful and culturally safe and responsive palliative care for Aboriginal and Torres Strait Islander patients, families and communities.

Learning Guide for Aboriginal and Torres Strait Islander health professionals

The Program of Experience in the Palliative Approach (PEPA) learning pathway is aimed at assisting Aboriginal and Torres Strait Islander health professionals to develop skills, knowledge and confidence in the palliative approach to care, and link traditional and contemporary practices when caring for people who are finishing up (2020).

Sad news, sorry business: guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying (for families)

This Queensland Health resource (2015) provides information and practical ideas to Aboriginal people about things to do before and after a death. Provides general guidance for carers of Aboriginal and Torres Strait Islander people faced with death, including expected costumes and practices.

Working with Aboriginal or Torres Strait Islander grief and bereavement - a resource for workers

Provides general guidance for health professionals, relating to grief and bereavement practices in both regional and urban Aboriginal communities.

Your Care. Our Mob

The Aboriginal Health and Medical Research Council (AHMRC) have developed a suite of resources to support the grief journey. Hard copy resources can be ordered directly from the AHMRC.

LGBTIQ+

Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI): Australia's ageing LGBTI population

An End of Life Direction for Aged Care (ELDAC) resource providing an overview of issues facing LGBTI populations in the provision of aged and palliative care (2020).

Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI): Palliative Care for people of diverse sex, gender and sexual orientation

This CareSearch resource provides information and tips for health professionals in how to respond appropriately to LGBTI communities, in the provision of palliative care including bereavement considerations (2021).

Palliative Care LGBTIQ+ Health Australia LGBTIQ+ Health: Palliative Care

An overview of palliative care and the barriers LGBTIQ+ communities face when accessing palliative care services

Supporting LGBT+ people around bereavement Supporting LGBT people around bereavement

It may not be evident or known that a person is LGBT+ so it is important that care is delivered, and communication conducted, in a way that is inclusive, affirmative, respectful and avoids making assumptions. This page focusses on bereavement rather than care before death. Provides practical support and considerations for health professionals when caring for people who are LGBT+ at the end of life or when supporting LGBT+ people around bereavement.

CALD

CanRevive Inc.

Cancer Institute NSW funding project with a directory of cancer resources and websites for members of Mandarin and Cantonese speaking communities. CanRevive has also developed written resources about palliative care in Cantonese and Mandarin as well as a DVD.

Culturally Responsive Palliative Care: Cultural perspectives and values from ten culturally and linguistically diverse communities in Victoria

The Culturally Responsive Palliative Care Community Education Project formed part of Palliative Care Victoria’s Cultural Responsiveness Strategy. The project was undertaken in partnership with the Ethnic Communities’ Council of Victoria in 2013-2015 and with the Multicultural Centre for Women’s Health (MCWH) in 2013-2014. It involved community engagement and peer education to raise awareness of, and access to, palliative care services and focused on ten larger communities: Chinese, Maltese, Italian, Turkish and Vietnamese during 2013-15 and the Greek, Macedonian, Polish, Croatian and Arabic speaking background communities in 2014-15.

Palliative care podcasts in non-English languages

A NSW Health series of audio programs to help multicultural families and their loved ones discuss end-of-life and palliative care (2020).

Palliative Care Victoria: living, dying and grieving well

Provides resources in 10 Community languages where a bilingual brochure can be downloaded as well as videos and podcasts.

Palliative Care: Information about palliative care in multiple languages

NSW Health information for patients and families on palliative care and services for people with a life-limiting illness.

Older people

(PalliAGED) Practice Tip Sheets

The palliAGED Practice Tip Sheets for care workers and nurses have been developed to support those providing palliative care to older people.

Bereavement evidence summary

Palliative care evidence and practice information resource for the Australia aged care sector, including the provision of support for health professionals and care workers.

Residential aged care – bereavement

This End of Life Direction for Aged Care (ELDAC) section reviews resources to assist you in recognising that someone is imminently dying and to provide support for dying residents and their families including bereavement

Responding to the death of a resident in aged care facilities: Perspectives of staff and residents

Tan, Heather et al. Responding to the Death of a Resident in Aged Care Facilities: Perspectives of Staff and Residents. Geriatric nursing (New York, N.Y.). 34. 10.1016/j.gerinurse.2012.08.001.

Suicide

Australian Suicide Loss – Facebook page

This is an Australian grassroots grief support group for those affected by suicide loss. The groups is auspiced by Grief Journeys Ltd. (https://www.griefjourneys.com.au/). The purpose of the group is to have a safe space around others who have experienced losing a loved one to suicide. A space to connect, ask questions, remember loved ones, share struggles and coping ideas and support each other.

Children and Young People Responsive Suicide Support (CYPRESS)

CYPRESS is a suicide support and bereavement counselling service for children and young people who have experienced the loss of a loved on or family member to suicide.

Feel the Magic

Feel the Magic® is an Australian not for profit organisation whose purpose is to create a world where children who are experiencing grief are supported to reach their full potential. Feel the Magic® runs Australia’s largest and leading grief education and support program Camp Magic®, a safe place for grieving kids to grow.

Grief Journeys

Grief Journeys are a not for profit company providing therapeutic services and advocacy for people bereaved by suicide. Grief Journeys workshops and groups provide a safe and supportive space to process and integrate suicide loss using art, therapeutic activities and relaxation.

Roses in the Ocean – bereaved by suicide

Roses in the Ocean has worked with members of their lived experience collective and industry colleagues to create a number of resources for individuals who are bereaved by suicide. Alongside online resources such as fact sheets and information guides, Roses in the Ocean brings the voice of lived experience to suicide prevention activities by way of inspiring and informative interviews and podcasts with members of their lived experience collective.

StandBy – support after suicide

StandBy provides free face to face or telephone support by local caring staff, committed to the wellbeing of the person or group impacted. The program provides a central point of coordination, connecting people to the various supports they may need through referrals to services, groups and organisations within their local area.

Suicide bereavement resource manual

A factsheet produced by the Mental Health Information Service on suicide bereavement.

Suicide call back service – Lost someone to suicide

The Suicide Call Back Service is a nationwide service providing 24/7 telephone and online counselling to people affected by suicide. The service has developed a suite of resources for those who have lost someone to suicide.

Support after suicide

Support After Suicide is a program of Jesuit Social Services funded by the Federal Government through the Victorian Primary Health Networks. They provide a range of services, programs and online resources to support people bereaved by suicide and professionals.

Wings of Hope

Wings of Hope is a registered harm prevention charity providing information, advice and guidance for people bereaved and impacted by suicide.

COVID-19

Aged Care Covid-19 Grief and Bereavement Service

Australian Centre for Grief & Bereavement resource for the bereaved following COVID-19.

Bereavement care guide – COVID-19

NSW Health recommendations for health services supporting the bereavement care of people impacted by COVID-19 related deaths, and other deaths during the pandemic (2020).

Palliative care in the COVID 19 context

Australian and New Zealand Society of Palliative Medicine (ANZPAM) guidance on palliative care in the COVID-19 context – including a factsheet on bereavement.

The utility of the Pandemic Grief Scale in Identifying Functional Impairment from COVID-19 Bereavement

Sherman A. Lee, Robert A. Neimeyer, and Lauren J. Breen (2021). Identifying Functional Impairment from COVID-19 Bereavement, Journal of Palliative Medicine http://doi.org/10.1089/jpm.2021.0103

Prolonged grief

Prolonged Grief Disorder [PG -13]

PG-13 is a diagnostic screening tool for PGD. A person who endorses experiences consistent with PGD are likely to benefit from specialised assessment by a mental health professional and treatment. The PG-13 was revised in 2021 to reflect contemporary understandings of PGD and incorporate more user-friendly language (PG-13R). PG-13 has been widely used in epidemiological and clinical research settings in western and non-western countries; however, there is a need for future research to confirm psycho-metric properties in more ethnically diverse populations. It may be used clinically as a screening tool or as part of a comprehensive assessment to help identify probable PGD. (2021) Prigerson, H. G., Boelen, P. A., Xu, J., Smith, K. V., & Maciejewski, P. K. (2021). Validation of the new DSM-5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World psychiatry : official journal of the World Psychiatric Association (WPA), 20(1), 96–106.

Prolonged grief: Applying the evidence in the primary care setting –Issues Brief for Primary Health Networks

Williams K, Thompson C and Morris D (2017) Prolonged grief: Applying the evidence in the primary care setting - Issues Brief for Primary Health Networks. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong

References

  1. Australian Centre for Grief and Bereavement. About Grief. Victoria: ACGB; 2019
  2. Stroebe M, Schut H, Stroebe W. Heath outcomes of bereavement. The Lancet. 2007;370(9603):1960-1973.
  3. Christ GH, Bonanna G, Malkinson R, Rubin S. Bereavement experiences after the death of a child. In: Field MJ, Behrman RE (editors). When children die: improving palliative care and end-of-life care for children and their families. Washington DC: The National Academy Press; 2003.

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