Advance Care Directives

published in L’Angolo della terza eta, La Fiamma, 6 May 2013

Concetta had a headache. Her daughter Anna had been trying to explain “Advance Care Directives” to her but Concetta found it all very confronting. Anna had found a form on the internet which was 12 pages long. The form required Concetta to make decisions about things that she really did not want to think about, such as: “If I am in the terminal phase of an incurable illness….do I want cardiopulmonary resuscitation…assisted ventilation…artificial hydration…artificial nutrition…antibiotics?”

“What if I’m in a persistent vegetative state (in a coma), or am so seriously ill or injured that I am unlikely to recover to the extent that I can live without the use of life-sustaining measures…?”

It was all too much for Concetta to contemplate. “OK Mamma”, said Anna, “Let’s go talk to the doctor and see if he can help us to do this.” Fortunately Concetta’s doctor was Italian-speaking and knew a lot about Advance Care Directives.

The doctor explained that an Advance Care Directive (ACD) is a statement, written in advance, setting out what medical treatment you want or do not want if you are not able to communicate because of illness or injury. It is sometimes called a “Living Will”. It is not used as a substitute for your decisions at the time of medical treatment if you can communicate your own wishes.

He further explained that an ACD in New South Wales can be legally binding under common law. It is considered legally binding if it meets the common law requirements of “specificity” (ie. treatment preferences are specific enough to guide medical decisions), “patient capacity” (ie. the person is mentally competent at the time of writing/signing the document and understands the significance of the document) and that the choice of treatment has been made free from coercion.

The doctor told Concetta that it was important for her to document her preferences to make it easier for her family and that this be witnessed in order to avoid any future doubts about this. As Concetta was struggling with the form, he advised her to write a letter outlining her wishes and bring in a copy for her to sign in front of him at the next visit.

NSW health sates that a person is not required to involve a health professional in preparing an ACD, but a health professional can give you information about prognosis and treatments that may specifically relate to your condition. Your doctor can also explain any medical terms that you are unclear about.

Concetta’s doctor was able to explain her diagnosis of early dementia and discuss her prognosis and possible treatments. He also explained the consequences of stating certain preferences, eg. if you state that you do not want any life-sustaining medical intervention if you deteriorate to the point of being bed-ridden and unable to communicate, then the focus of care will be to keep you comfortable and pain-free.

Concetta took several days to write her letter. She discussed it with Anna many times and when she was done, she took it to her doctor where it was signed, witnessed and copied. She kept one copy and gave one copy to Anna and one to her doctor. The doctor said they would need to review the letter in two years time. Concetta crossed herself and prayed that she would be in a fit enough state of health to be able to review her preferences again in two years down the track.

More information about Advance Care Directives can be obtained from: NSW Ministery of  Health

NSW Department of Family & Community Services – Ageing, Disability & Home Care

Guardianship Tribunal

Dying with Dignity NSW

Italian version pdf advance care directives it