Guidelines for the ethical management of people with advanced chronic or terminal conditions in the final months of life

Summary information

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Many people of all ages are diagnosed with chronic or terminal conditions every year.

If you are an individual in this situation or a health practitioner providing care for someone in this situation, the guidance and framework documents on this page may assist with the difficult ethical deliberations around the care you are receiving or providing.

The framework is intended for health professionals and has been designed to guide deliberations over ethical aspects of providing care at the transition phase of a patient’s journey through an advanced chronic or terminal condition, including cancer.

The guide is intended for patients (of all ages), families and carers and has been designed to facilitate what can be difficult conversations about ethically related issues which arise at this time of transition e.g. preferred type and place of care – hospice, hospital, or home. 

Both the framework and the guide identify key ethical principles and values relevant to the last twelve months or so of life for those with an advanced chronic or terminal condition making the transition to palliative care. The documents pose some questions which can be explored at any stage of this transition whether as patients, health professionals, family or carers. 

They also provide additional resources via web-links to assist health professionals, patients, carers or family members to access further information and advice for deliberations about the ethical aspects of the palliative care being provided.

Background information

The ethical principles and values described in An ethical framework for integrating palliative care principles into the management of advanced chronic or terminal conditions (the framework), and the companion consumer guide have been developed by NHMRC with advice from a sub-group of the Australian Health Ethics Committee (AHEC). Input was sought from a diverse range of stakeholders via targeted and public consultation process (2008 and 2009/10 respectively).

In considering submissions, AHEC determined that there was a gap in the literature around what has been termed a ‘transition phase’. This is the period when individuals with advanced chronic or terminal conditions became aware that the final phase of life is approaching but death is not yet imminent - typically twelve months or so prior to death. The framework and the guide were developed in light of the submissions received to address that gap.

Release of the guidelines

The NHMRC publicly released the framework and the guide in September 2011.

View the Media Release - Living well in the last months of life

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For more information please contact the Transitions Project Officer:

Project Officer – Transitions
Health and Research Ethics Section
Research Translation, Canberra
National Health and Medical Research Council
GPO Box 1421
Canberra  ACT  2601