Wayne Hawthorne, Naracoorte Community News

“It’s your life and your death – get your words right and the process right” was the message Naracoorte Men’s Probus Club learnt recently. The talk was about “ACD’s” (Advanced Care Directives) which, in 2014 replaced the old Enduring Guardian Power of Attorney. By definition, “an Advance Care Directive empowers you to make clear legal arrangements for your future health care, end of life, preferred living arrangements and other personal matters” (SA Health website).

Brian Gepp spoke of his experience caring for his wife with progressively worsening dementia. He then spoke on how citizens can ensure their medical wishes are followed. Brian told of his campaign to assist in understanding of and writing Advanced Care Directives (ACD’s). Firstly, there must be awareness of these ACD’s, and where to get them. Then these need to be accessible and available, displayed rather than kept in a solicitor’s office, with a copy of your will. The ACD must be a precise document, worded to protect the patient and those in attendance.

Ambulance officers look for the document on the fridge door when attending a call-out, it is referred to in what is called an Emergency Medical Information Booklet, that is available via Service Clubs and also contains relevant medical information. A vital component should be no “wriggle room” or possibility of misinterpretation of your words in an ACD. The words “I direct or refuse” should be used rather than “I do not want” in order to be exactly precise when refusing medical treatment. Just last month (March 2024) ACD forms have changed and improved and many would not be aware of this, or that they even exist and are available from the SA Gov website.

Advanced Care Directives (ACD’s) have two components. There is a section on wishes and values, but these are not legally binding. Then there is also the legal binding medical refusal section. Hence the holder must have a discussion with their family, to ensure that they know it is their wish that is written, documented and MUST be followed. The words must be right, precise and not subject to misinterpretation.

For example, “Do not resuscitate” or “no invasive procedures”. The carer and/or the person who is responsible for communicating and “pushing” for the ACD to be followed can feel that they are between a rock and a hard place. Why not try to keep them alive? Why let my loved one die? Note that there is a $20,000 fine and two-year imprisonment for disregarding an ACD. They must be followed, but sometimes difficulties often arise and can cause lingering grief to family if “it is a bad death experience”.

Issues arising about ACD’s and their use, acceptance and implementation include:

• Fear of losing the document, or it being buried in bureaucracy and not seen by those in attendance, especially at the time when an urgent decision is required.
• Fear that Medical officers continue treatment when an ACD directs not to. Training is to keep patients alive and health practitioners are usually unaware of fines and even gaol as punishments.
• Beliefs, religious and other, including human instinct, compassion and grief.
• ACD’s not being available and read by all attending medical staff, as some may be new to the patient as ‘locums’.
• General attitudes of society to keep people alive, no matter what.
• Attitude of carers and/or relatives that they cannot starve patients who direct no food or water, particularly if a person has lost communication skills as a Dementia sufferer
• In the Christian world, discussing death and dying is often considered taboo.

Probus were alerted and told that there needs to be greater awareness of Advanced Care Directives, especially since the new form has been recently released without any publicity. Examples were given about ACD’s lack of availability or visibility. They can be obtained via the SA health website. Questions were asked and some local examples were given of availability and publicity, including what the Naracoorte Lions Club have done. Obviously even more can be done.

The message was very clear from Brian Gepp, a man who has had first-hand experience while caring for his wife and her dementia. Since this experience he has campaigned to ensure Advanced Care Directives are known about, written correctly and adhered to by all treating the patient. In the case of Dementia sufferers a discussion of the ‘late’ stages of the disease is vital early after diagnosis, because preparing an ACD requires mental capacity. This discussion is often the most difficult to have as you are talking about preparing to lose your loved one at some time in the future.

This article appeared in the Naracoorte Community News.