What is palliative care?Palliative care improves the quality of life of individuals and their families facing the problems associated with life-limiting illness. Palliative Care can address the prevention and relief of suffering by means of early identification and assessment, treatment of pain and other problems, physical, psychosocial and spiritual health and wellbeing. It aims to ease the suffering of patients and their families and neither to prolong nor shorten life. For more information, go to the Palliative Care Australia website www.palliativecare.org.au
Where can I access palliative care?Palliative care is available to anyone with a life-limiting illness. Individuals living with cancer, dementia, chronic conditions or degenerative conditions can access palliative care to improve quality of life. Talk with your general practitioner, medical specialist or other health provider, at any time.
What does end-of-life care mean?End-of-life care refers to the palliative care services available to individuals and their families facing end of life, which may be in the event someone is living with a chronic condition.
What is Advance Care Planning (ACP)?ACP is an on-going process of shared planning for current and future health care. It involves talking about your values, beliefs and preferences so they can guide decision-making if you cannot make or communicate your decisions. More information about advance care planning is available on the Advanced Care Planning Australia website www.advancecareplanning.org.au/
Who needs to do Advance Care Planning (ACP)?Everyone should consider ACP, regardless of age or health. It can be particularly important to individuals such as people with an advanced chronic illness, a life-limiting illness and those people who are planning for retirement or those at risk of living with declining cognition. Think of ACP like a health and wellbeing will – it lets your health care providers, family and friends know what your decisions are. More information can be found on the My Health Record website myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/acp.
What is an Advance Care Directive (ACD)?An ACD is a type of written Advance Care Plan. It is recognised by common law or specific legislation and is completed and signed by a competent adult. It can record your preferences for future care, and appoint a substitute decision-maker to make decisions about health care and personal life management if you are unable to communicate your wishes.
When is an Advance Care Directive (ACD) used?These are only used if you are unable to make or communicate your decisions. The ACD would then be used to guide the decisions made by the medical staff in consultation with the appointed substitute decision maker and family.
Why is it helpful to make an Advance Care Directive (ACD)?Completing an ACD often reassures you and your family so that they have a clear idea of what you want in the event of illness or injury. By completing an ACD promotes your autonomy and dignity, and can reduce suffering both for you and your family. It is particularly appropriate when an ACD is completed by people who already have an advanced chronic illness, a life-limiting physical and mental illness.
Is Advance Care Planning (ACP) the same as euthanasia?No, there are very significant differences between ACP and euthanasia. ACP is the process of discussing and choosing future health care and medical treatment options. It is about you making decisions about your own medical treatment including refusing treatment. Euthanasia is the practice of intentionally ending life in order to relieve pain and suffering. Euthanasia is currently illegal in Australia.
Is a doctor required to complete an Advance Care Directive (ACD)?Ideally an ACD should be discussed with a doctor as this ensures that any decisions made are informed by health care professionals as it specifically relates to you. It also ensures that the treating doctor is fully aware of your treatment preferences and therefore better able to provide medical care that takes these preferences into account.
Who can you choose/nominate as a substitute decision-maker (SDM)?A SDM is expected to act in your best interests and make the same decisions they believe you would have made. A SDM should be:
- Someone you trust
- Someone who will listen carefully to your wishes and values
- Available (ideally live in the same city or region)
- Over the age of 18
- Prepared to communicate clearly and confidently on your behalf when talking to your doctors, other health professionals and family members.
What authority does a substitute decision-maker (SDM) have?There are some differences between Australian states and territories, but generally a SDM can consent to medical treatment on your behalf if you lose capacity. In some states and territories, they can also legally refuse medical treatment if you have made your preferences known.
Can an Advance Care Directive (ACD) be changed or revoked?Yes, it can be changed or revoked while you still have capacity. It is best to make a new ACD and destroy any old ones. Ensure that those who had a copy of the previous directive receive a copy of the new directive.
Does an Advance Care Directive (ACD) still apply if the person is interstate?Not necessarily. Each state and territory has its own type of ACD, and may not recognise an ACD from another state or territory. However, if you have discussed your preferences with a substitute decision-maker (SDM) and family, then they will be able to give information regarding your preferences to the doctors. The SDM and family will also be able to give your ACD to the treating doctors, who can take your preferences into account.
What happens in an emergency?In an emergency, doctors will make medical decisions taking into account your preferences whether they were expressed in an Advanced Care Directive (ACD) or verbally to the Substitute Decision-Maker (SDM) and family. If the ACD is not immediately available, life-prolonging measures may be started until the treating doctors can hold discussions with the SDM/family regarding expressed preferences.
How does a hospital know that I have an advance care plan?If you have uploaded your Advanced Care Plan (ACP) to your My Health Record (the Australian Government’s digital health record) or your state/territory’s digital health record, the hospital may be able to access your Advanced Care Plan automatically. Otherwise your substitute decision-maker can inform the hospital during your admission and provide a copy.
Please visit the My Health Record website for more information on how to upload your ACP.