14 May Advance Care Directives: Why me? and How will anyone know?
As of 1 July 2014, the Advance Care Directive (ACD) empowers you to make clear legal arrangements for your future health care, end of life, preferred living arrangements, and other personal matters. An Advance Care Directive allows us to think about how we want to be cared for when we can no longer make our own decisions. It is not an easy conversation to have with loved ones, but it is a necessary one.
According to research from March 2015*, only 21% of South Australian’s have an Advance Care Directive. An Advanced Care Directive is a formal document recognised under law in which a person can specify their preferences for future care, and determine a substitute decision-maker in the event that he/she is unable to make decisions for his/herself. An Advance Care Directive gives you the right to make advance decisions about your healthcare while you are of sound-mind. Advance Care Directives are not only important for end of life care, but in any instance when we are medically unable to make a decision. They also cover more than death directives. ACD’s go as far as to represent your values and interests, specifically music you would like played or mementos you would like displayed if you must be cared for in a facility.
It is all good and well to have an Advance Care Directive, but it is of no use if no one knows about it. Doctors cannot follow a directive if they do not know it exists, so be sure to tell your general practitioner, specialists, and other health professionals. The elderly, though this could happen to someone of any age, may be worried that no one will know that they have an Advance Care Directive if they were to fall at home and are unconscious when taken to the hospital in an ambulance. Unfortunately, Australia does not have any type of central registry for Advance Care Directives, but anyone with an electronic health record – known as My Health Record – can include their Advance Care Directive there. This is the best way to help doctors or first-responders, who are not familiar with a patient, to carry out their wishes.
My Health Record is a secure online summary of a person’s health information. You are able to control what is included and who can access it. If you were to end up in the emergency room unconscious from a fall, the staff there will be able to access your records electronically, including your saved Advance Care Directive if you have one. The My Health Record database is an ongoing piece of work that only 23% of Australians use. According to the government, by the end of 2018, every Australian will have a My Health Record (unless they do not wish to).
At this time, fewer than 900 people have uploaded their Advance Care Directive onto My Health Record. Legal information websites need to prompt users to do this because it is the only national registry that stores Advance Care Directives that can be accessed anywhere. You can find steps on how to register here. Unlike a will, an Advance Care Directive is of no use if someone happens upon it at your home after your death.
At my law firm, Wills At Your Home, I like to ensure that my clients also have multiple certified copies (I keep the original in my safe) of their Advance Care Directives plus the Emergency Medical Information Booklet (EMIB), wallet card, and flyers about both My Health Record and MedicAlert. MedicAlert allows you to store all of your health information in their database (for a fee), including your Advance Care Directive, and then provides customers with a wearable tag with a 24/7 emergency response service number, and your individual member number so that emergency response professionals can access your information immediately. The EMIB contains all of your medical records that could be needed in the event that you need to be transported to the hospital by an ambulance. First-responders are trained to look for both an EMIB and a MedicAlert bracelet.
I am both a lawyer and a nurse with experience in aged care and palliative care. I have, therefore, not only drafted Advance Care Directives, but seen firsthand how helpful they are to doctors, nurses, paramedics, and other health professionals. I am passionate about caring for my clients from the perspective of a nurse AND a lawyer.
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* Tilse, C,. J., White, B., Rosenman, L. & Feeney, R. (2015) Having the Last Word? Will making and contestation in Australia. The University of Queensland