End of life care
The care people receive in the last years, months and weeks of their lives is vital in minimising distress and grief for the individual and their loved ones. We have advice and resources to help health professionals deliver safe and quality end of life care.
What is end-of-life care?
End-of-life care is the delivery of care for someone who is dying.
It focuses on the person’s individual needs, preferences and circumstances, and aims to minimise stress and discomfort for the person and their loved ones.
End-of-life care involves the decisions of the person, their loved ones and carers and is comprehensive and coordinated; giving the person the health care they need or want.
How we are supporting health professionals to deliver end-of-life care
It’s important health professionals and health organisations have processes and systems in place to ensure they are delivering safe and high-quality end-of-life care.
We have a range of resources and guidance to support the delivery of high quality end of life care including our comprehensive care standard and end-of-life care user guide.
We also have resources to help health service organisations audit, examine and improve the quality of their end-of-life care.
National Consensus Statements on End-of-Life Care
There are two National Consensus Statements on End-of-Life Care: one for adults and one for paediatrics. They provide guidance for the delivery of safe, high‑quality end-of-life care across all care settings and support a consistent approach while recognising the distinct needs of adults and children.
Both Consensus Statements are relevant for:
- health professionals involved in the delivery of end-of-life care
- health service executives and managers responsible for developing, implementing and reviewing systems for delivering patient care in individual health services or groups of health services
- providers of clinical education and training, including universities and professional colleges
- health professional registration, regulation and accreditation agencies, and
- planners, program managers, and policymakers responsible for developing and implementing end-of-life care programs or policies
National Consensus Statement: Essential elements for safe and high-quality end-of-life care for adults
Our national consensus statement describes the key clinical and organisational requirements for delivering excellent end-of-life care for adults and is informed by a set of nine guiding principles and ten essential elements that support best practice.
National Consensus Statement: Essential elements for safe and high-quality paediatric end-of-life care
Our national consensus statement for paediatrics describes end-of-life care for children and reflects the unique clinical, developmental, and family‑centred considerations involved in providing care at the end of life.
End-of-life care audit tools
Our end-of-life care audit tools are designed to help health professionals examine and improve the quality of their end-of-life care. Implementing an end-of-life care audit within your organisation will require leadership, management and the engagement of staff at all levels. Key elements of an end-of-life-care audit include:
Ethics approval
Local guidance should be sought regarding the level of ethics approval required. The aim of your audit will generally dictate whether approval is required; studies undertaken purely for quality improvement will not normally require approval, while studies undertaken for research purposes will usually require ethics approval. Ethical practice and standards should be maintained in all instances.
Leadership
It is important that the end-of-life care audit and clinician surveys are supported and endorsed by the organisation's executive, managers, and clinical leaders. This leadership will help to ensure that the results are used to drive improvement.
Set-up and management
There are a number of decisions to be made in setting up the audit:
- Resources, including computing resources and staff time to enable data entry and analysis
- Scheduling, which should establish a regular process for audits; this can involve a regular audit (for example, monthly, quarterly or annually), or continuous entry of data which is then analysed regularly
- Processes, for accurate data entry (using the data dictionary and patient identifier table) and analysis
- Feedback, which should establish the process by which audit results can be fed back into organisational decision-making and quality improvement processes.
Staff support
There are a number of decisions to be made in setting up the audit:
- Resources, including computing resources and staff time to enable data entry and analysis
- Scheduling, which should establish a regular process for audits; this can involve a regular audit (for example, monthly, quarterly or annually), or continuous entry of data which is then analysed regularly
- Processes, for accurate data entry (using the data dictionary and patient identifier table) and analysis
- Feedback, which should establish the process by which audit results can be fed back into organisational decision-making and quality improvement processes.
Staff engagement
Communicating with staff, including the executive and staff at all levels, is essential to ensure they understand and support the aims of the audit and the improvements that may need to be made. Consider the use of flyers, emails, posters and presentations to support staff engagement.
Audit tools
The toolkit includes advice on the level of leadership required to successfully perform an audit, steps to analyse audit results, and tools and surveys to perform an audit.
- End-of-life care audit tool: Supports collection of data from clinical records to provide a picture of current end-of-life processes within a hospital.
- Clinician survey: Explores the perceptions of consultants, nursing staff, junior clinicians and allied health workers about end-of-life care. Data from both the audit tool and the clinician survey can be used comparatively to evaluate whether perceptions of care differ from the level of actual care provided.
- Hospital information survey: Helps to set the context of data by establishing hospital demographics.
- End-of-life care audit toolkit analysis plan: Helps to plan the analysis of the data obtained from the clinical audit, clinician survey, and hospital information survey.
- Data dictionary: Ensures consistency when completing audits with data definitions.
External resources
- Australian Death Notification Service: A free service to help people let multiple organisations know someone has died using a single online notification.
- Flinders University education module: A number of end of life education modules to assist acute care clinicians in meeting the challenges of providing end-of-life care.
- Orientation to end of life care: Four education modules on the importance of end-of-life care.
- End-of-Life Law for Clinicians: Online training modules about the law of end of life decision making.
- Care search: Evidence based information about palliative care.
- The Australian Indigenous palliative care and end of life care portal: Culturally appropriate palliative care and end-of-life care, grief, bereavement and planning for Aboriginal and Torres Strait Islander people.
- Caring@home: Nationally consistent end of life care resources and education for health professionals.
- The Palliative Care In Prisons Project: Palliative and end-of-life care advice for people in prisons.
- Paediatric Palliative Care Education Hub: A selection of paediatric and palliative care education modules.
- ACON Palliative Care Support: A toolkit to make it easier to have open conversations about death and dying through the lens of the LGBTQ+ community.
- Palliative Care Education (PaCE) Directory: A directory for educators and health professionals with resources that support palliative care capabilities.
State and territory websites
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