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Advance Care Planning - November Newsletter


**Port Elliot with Grandma Nerida (90yo), Cece (1.5yo) and Mum (not sure she wants me to disclose…) On Saturday 28th October at 2.30pm, we farewelled my Grandma Anne from this world. Just incase you’re confused, this isn’t my Grandma pictured above, this was my Grandma on my Dad’s side. Grandma Anne had been unwell for many years now, so whilst it was no surprise when she became palliative, it is still a huge adjustment for the family. I was incredibly privileged to be there as she died. I very intentionally use the word privileged, because it was exactly that. In my line of work I’ve been around many dying people, but this was the first time I’ve been there as someone took their last breath. And what an absolute honour that was. We were lucky that she had a beautifully smooth and painless transition out of this world. Whilst I’m not religious, I do believe there’s something deeply spiritual about when people choose to leave. I don’t think it’s a coincidence that her husband and three children were present and that within a minute of us telling her that it’s okay to let go, she did. Whilst we all know this day is coming for us and our loved ones, we can often feel underprepared as it occurs. In the hours, days and weeks surrounding death, there are many decisions to be made. How do they wish to be cared for when they can no longer communicate their needs? Do they want to family present as they pass? Do they want to be buried or cremated? What kind of service do they want to have? The questions are endless. For this reason, the theme I’ve chosen for November is ‘Advance Planning Documents’.


In South Australia, there are three key succession planning documents that can help your family as you are ageing and once you die - a will, Enduring Power of Attorney (EPA) and Advance Care Directive (ACD). In case you’re wondering what the difference between these documents is and what roles they play… a very high level, simple summary is: WILL A legal document with instructions for who you want to inherit your estate, care for your children and be the executor of your estate. ENDURING POWER OF ATTORNEY A legal document which allows you to appoint an Attorney to make decisions about your financial and legal matters. ADVANCE CARE DIRECTIVE A legal document which allows you to appoint a Substitute Decision Maker and documents wishes for your future health care, end of life, preferred living arrangements and other personal matters. **If you do complete an Advance Care Directive, it will replace any Enduring Power of Guardianship, Medical Power of Attorney or Anticipatory Direction documents you may have completed previously.

Each state and territory has a slightly different structure or name for an 'Advance Care Directive'. To find the documents relevant to your location, head to www.agedcareplanning.org.au and select the 'Create your plan' option. —————————————— Whilst Advance Care Directives have existed since 2014 and were established to be a cornerstone of advance care planning policy in Australia, there are a relatively low number of ageing Australians who have completed ACDs. A 2021 study into the prevalence of Advanced Care Directives (ACD) found that 25.3% of older Australians had completed an ACD, from a sample of 4187. The main contributing factors to having a completed ACD were being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. WHAT DOES AN ACD DO? Advance Care Directives focus on your future health care wishes, end of life planning, living arrangements and other personal matters. The full Advance Care Directive form can be found here and details many values based questions e.g. outcomes of care you wish to avoid, where you wish to live, dying wishes and other personal arrangements.* *My personal favourite question is ‘Other Personal Arrangements’ as you can include great detail about what matters to you here. I had a client who wrote ‘I’d like to have my eye brows waxed and chin hairs plucked’ because she wanted to maintain her personal appearance despite being no longer able to communicate that. That level of detail is fantastic! Advance Care Directives are enacted if you no longer have capacity to make or communicate decisions for yourself (temporarily or permanently). Some of the main factors for when an ACD would be implement are if you cannot:

  • understand information about the decision

  • understand and appreciate the risks and benefits of the choices

  • remember the information for a short time; and

  • tell someone what the decision is and why you have made the decision.

Advance Care Directives allow you to nominate a Substitute Decision Maker. You can choose to nominate a representative (or multiple) who must be consulted on decisions when you are unable to make decisions for yourself. They follow your wishes as outlined in the Advance Care Directives, but where decisions may be unclear Substitute Decision Makers, in consultation with health professionals, can make the call. SO WHY SHOULD I COMPLETE AN ACD? When ACD’s are completed well (in great detail and with clear instructions) they can be incredibly helpful in an otherwise stressful time. UPHOLD WISHES The main reason is to ensure that your wishes are respected. When everyone is on the same page and has a single source of truth, it makes it much simpler to advocate on your behalf and ensure you receive the care you would want to. MINIMISE FAMILY DISPUTES Often people with complex family dynamics utilise ACD’s to give clear decision making authority and ensure wishes are upheld. This can be incredibly helpful for health/aged care professionals to minimise disputes and have an identified decision maker in times of crisis. TO EASE STRESS Families who generally get along well sometimes don’t see the point of nominating a Substitute Decision Maker or detailing their wishes. There can be an attitude of ‘they know my values and can decide what’s best’. Whilst this does give a high level of flexibility to decision makers, it can often cause undue stress in high pressure/high stress time when a loved one is dying. Scenario: Edward has nominated his two children Lily and Steve as his Substitute Decision Makers. He has left the other questions in his ACD vague stating ‘to be decided by Substitute Decision Makers’. Edward is very close with Lily and Steve and felt specific examples could be limiting. Edward unexpectedly has a stroke at 72 years old - he is now unable to communicate, bed bound, awake for limited periods of time and reliant on a ventilator to stay alive. Lily feels clear that her Dad would not want to continue living this way - she thinks it would be kindest to move him back home with the support of a palliative care team and allow him to die at home. Steve disagrees. Steve understands Lily’s perspective, but feels this is much younger than when Edward thought this might happen. He feels that his Dad would prefer to fight longer in hospital and see how much rehabilitation he can do. Both Lily and Steve care greatly for their Dad and are both trying to uphold what they feel are his wishes. However, without clear documentation of what Edward wants, he has now accidentally created an additional layer of stress to an already chaotic time.

I feel passionately about high quality Advance Care Directives and will be unpacking this in my November podcast episodes, which will be released on the 8th and 22nd of November. If you would like to listen to the podcast, it is called ‘The Truth About Ageing’ and can be found in your favourite podcast app (Apple Podcasts, Spotify) or at www.navigateagedcare.com.au/podcast In the meantime, if you want to listen to my podcast episode on what to do if you reach a crisis and don’t have future planning documents: E52 - When You Don't Have Future Planning Documents with Social Worker Tamara - How is 'capacity' determined? Who can be substitute decision makers?What the Public Trustee, Office of the Public Advocate and Cival & Administrative Tribunals are and when they're utilised? How to avoid getting to a crisis where these services are required? Have a beautiful November and I’ll be posting again on the 3rd of December! Big love, Kate.


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