Advance Care Directives - Document Redesign Project

On behalf of the South Australian Council on Intellectual Disability (SACID), we want to say that the format is improved however, people with intellectual disability employed at SACID have expressed that there is a need for an Easy Read or Plain English version of the Advanced Care Directive form. The jargonistic language and density of the information currently used throughout the document means that it is not accessible for people with intellectual disability and other groups that benefit from easy-to-understand English.

SACID currently delivers the Future Proofing workshop to family members, guardians, and carers of people with intellectual disability living in South Australia. The aim of the workshop is to provide options for support for carers of people with intellectual disability that are available in their community and help carers to plan for their person’s future. As part of the workshop, SACID discusses legal arrangements for families to consider, including Advanced Care Directives. Having these future planning arrangements in place is essential for families to feel secure for their person’s future.

People with intellectual disability often are left out of decisions pertaining to their life. Having an accessible version of the Advanced Care Directive allows people with intellectual disability to be part of the future planning process and making decisions about their life, as it is their right. Having an Easy Read and Plain English not only benefits people with intellectual disability and their families, but also helps people who do not speak English as their first language.

People with intellectual disability also have expressed the cover of the proposed form does not accurately represent the diverse populations of Australians. They have also expressed the phrase 'dying wishes' to be changed. For people with intellectual disability, grief and loss is often a difficult subject to talk about and perhaps it could help to phrase this in a way that does not cause further anxiety and stress to people. The Advanced Care Directive should not centre its purpose around the end of life of a person, but ensuring that a person having the choice and control to choose how they want to live.

Having been a community RN for many years and having given and discussed the current form with clients, this is a much improved version. We’ll set out and explains everything well

Thanks for sharing these - I think the changes are very good - I do like the large print used in the Guide adn the extensive suggestions for what could be used to express last wishes.

So glad this is happening

The form has improved, however, there are still issues that need to be considered:
Page 1 - remove reference to JP Stamp - this causes confusion as JPs think they have to stamp the documents when witnessing it.
Part 3 f) - dying wishes needs to be re-phrased. I have seen a number of documents where individuals view this section as a form of will and try to distribute their estate in this section.
Part 5 - It is great to see that this is included but it needs to be expanded further. Ticking that they know what their options are does not indicate to anyone what their wishes are. In an emergency you may not have access to their driver's licence. This document should encompass all wishes in the one place. Maybe add a space after Yes - where the donor can set out what their wishes are or add "I have visited DonateLife.gov.au and registered/not registered as an organ/organ and tissue donor"
In Part 8 where the donor signs, there is nothing indicating to them in this section that they should sign after the SDMs have signed (there is on the previous page, but will they read the top of a page they do not have to sign?) . If this requirement is to remain, then expand the declaration to say that the donor has signed after all SDMs have accepted their appointments.
There should be provision for Notaries to be authorised witnesses (to include those who are notaries inter-state who may not be legal practitioners in SA).

I think the form is a lot simpler, clearer and easier to read than the previous version. However, it still may be difficult for some people to answer some of the questions in a way that makes sense to medical professionals. It should be encouraged to complete this form with the assistance of someone with medical knowledge, eg. paramedic, nurse, doctor, (not a lawyer) as they are the ones that need to provide care that follows these wishes, especially in an emergency. Consider an URGENT section which has tick boxes to prompt in the case of an emergency and there isn't time to call SDMs, or read between the lines of the other pages: If you collapsed today do you want -CPR? -intubation and ventilation? -IV cannulation? -blood products? -retrieval to major hospitals by helicopter/plane (from regional centres)? joint replacements? -surgery? -to die at home? (ie like a 7-step pathway hospital document - attach one if necessary).
I advocate to my patients the need to complete this document but many people are put off because they don't want to talk about 'dying', they don't make time, or they think it's too complicated. We need to change the context that this is about choosing the way you live. They also don't appreciate how many different decisions may need to be made in an emergency by people who don't know you. It would also be easier if I could hand them a pack to read and complete the form with assistance if needed (or book an appointment with a clinician to JUST. GET. IT. DONE.
I also think it can be important to know an SDM's relationship to the patient if it makes a difference to how they are contacted, verifies their identity or provides some context to their relationship when difficult conversations are taking place and decisions need to be made.

The only aspect of this that I query is the requirement for the Authorized Witness to state, and sign, that they have given the Grantor the Information section. I would have thought that obtaining and reading this would be the responsibility of the Grantor or their carer prior to completing the form.

I appreciate your efforts in trying to improve this form. I downloaded it two years ago but found it far too cumbersome to work my way through it and didn't really understand what was required. And I worked my whole life in government so am used to forms!

Just a few points I would like you to consider:
1. You need to make it easy to get a hard copy.
Not everyone has a computer or wants to read such a long document online. Or wants to print one out as it would chew up a considerable amount of toner. (Always a consideration before one prints at home!) Suggesting one drops into their local Service SA office isnt always an option - depending on ones location and abilities - and even the suggestion of visiting a busy office is off-putting. Being able to request a hard copy be sent by snail mail is still a viable option.
2. You need to sell the reason why it is needed.
A number of my friends - and their elderly parents - simply believe that their next of kin will be willing, able and familiar enough to "do the right thing" for them when the time comes. A scenario or two (similar to the ones in your guide) where wrong decisions are made by ill-informed persons would help drive the message home.
3. It needs to be accompanied by training of those able to complete it on behalf of others.
Whether this is a trusted person in the family or community or a death doula; such a complicated and important form needs more than just a written guide. A video - or a series of short videos - could be produced to adapt to a range of scenarios. Including some in a range of languages (notably remote Aboriginal languages such as Pitjantjatjara) to assist understanding by both the person completing the form and the actual patient themself. Having worked in Aboriginal Affairs for some time, I experienced a number of instances where families were at loggerheads with each other over funeral and burial arrangements of their loved one. This could potentially help to address some of these distressing and protracted disagreements.

Both my wife and I have completed ACDs. Our adult children know where they are, we carry the card, and they are on the National Register.
However we are mindful of several flaws with ACDs that have not been addressed in the proposed changes.
1. An ACD is not a legal document with the same force of law behind it as a contract or a Will. Therefore it can be flouted with no penalty by a doctor or a nominated Substitute Decision Maker (SDM) without penalty or scrutiny. For example, a doctor can sidestep the issue by finding a loophole in the specified circumstances and a SDM, despite having agreed to the patient's wishes beforehand, may become overwhelmed in the situation and disregard those wishes.
2. An ACD does not properly cater for Voluntary Assisted Dying (VAD) when the vast majority would choose this a preferred option in dealing with their imminent death.
3. There is no provision for an independent SDM in cases where the patient has no living relatives or friends available to take on this role e.g. a refugee.
4. There does not appear to be a process post mortem for an independent person or body to review whether the patient had an ACD in place and, if so, was it honoured and if not, why not?
5. New legislation is needed to incorporate a Living Will into a person's Last Will and Testament, with the same provisions for Executors who fail to follow the terms of the Will. It is a travesty that there are penalties for not adhering to a person's wishes in regard to property and none for disregarding their wishes as to how they wish to die.
6. ACDs are a sad reflection of the medicalisation of palliative care and dying and they simply reinforce a doctor's right to continue to engage in pointless procedures at public expense without any form of professional or public scrutiny. When the broader community is desperate for locally accessible medical services and we keep spending 25% of the Medicare budget on people in the last 12 months of their life, we have a system that is severely broken.

PS - Please re-set the language options on your feedback system to Australian English rather than US 'English'.

It would be useful to trial the penultimate document in a group of people across the age spectrum , naive to the ACD form, to try to ensure the form is fit for purpose.

There must be more space in the online form when the person wants to specify further directives than the small amount of space available in the previous form. My ACD is missing crucial information because the online form only gave me a small space to write in in the online form, and I couldn't gain extra space (pages) in that online form. It needs to be easy to add extra pages to the online form.

You also need to specify that the ACD will no longer be followed when it is suspected that the person has attempted suicide - that is crucial information that needs to be front and center (and is a step backwards in self-determination particularly in an environment where access to euthenasia is very restricted).

I don't feel that a straight, white couple with a child is an accurate reflection of our community - the imagery needs to cast a much wider net and actually represent diversity or have a design that replaces an image.

In the last section it talks about a CERTIFIED COPY - how do people know what that means? who can certify, where to go to get that information or have a certification completed?

I am shocked that a document intended for health care providers confuses sex and gender. Male and female are descriptors of biological sex, not gender. It is critically important for health care providers to know the biological sex of their patients. We must, of course, respect the right of people to risk mistreatment by refusing to declare their biological sex and so the question regarding sex should offer the options: male, female, prefer not to say. The guide should suggest that people who identify as non-binary or transgender, as well as people who are homosexual or bisexual, should make this clear in the section dealing with values if they wish to have their gender identity or sexuality acknowledged and considered in their health care treatment. The management of dementia when suffered by these people involves a range of complex issues and can be extremely difficult for both health care providers and family/friends. As it stands the draft form merely pays lip service to this complexity by asking about gender, when you mean both biological sex (female vs male) and gender identity ( non binary), and ignoring sexuality altogether. You need a special focus group to advise you on ways the form can deal both effectively and sensitively with this mattter.

It seems there is overlap between part 3b (What I don’t want to happen to me) and Part 4 (Binding refusals of health care). Why not incorporate Part 4 into Part 3b?

Sadly the authors of this document have not listened to any feedback since its predecessor was written.
* Page 1 - remove the box for the Certification statement of JP stamp. This will only continue the current confusion.
* Page 2 - Part 2a. WHY have this page and then get Substitute Decision Makers to go to page 8 to do their signing - just ridiculous
* Page 2 - Part 2a - WHY ask SDM to add their relationship - its none of anyone else's business
* Page 3 - Part 2b - First point of Contact - worth considering
* Page 7 Part 5 - Organ donation - GREAT
* Page 8 Part 7 - see earlier comment - this WILL confuse people with its location on the document

For goodness sake combine pages 2 & 8 into one set of data for each Substitute Decision Maker

I make these comments as a JP of 30 years standing and I still volunteer in Council chambers and out in the community

It is contrary to all logic, a legal anachronism and pure bureaucracy to legislate for the substitute decision makers to sign an ACD before the person giving the Advance Care Directive signs it. In all common sense, a power cannot be accepted before it is granted. This puzzling insistence causes practical issues in a client attending a solicitor for an additional appointment, and it means that the giver of the power cannot get the job done, contrary to an Enduring Power of Attorney, until after rounding up adult children or others who have scattered across Australia or even the world, or who simply become recalcitrant. By the time people get around to doing an ACD they are often infirm or elderly, which means that time is of the essence.

This is a very necessary document in todays sometimes difficult family climate. But it is rather long and complicated to address in one sitting for some folks, particularly if left when age or disability hinders lengthy concentration. May be it could be divided into sections to be tackled in logical sequence over time with important persons nominated first who are authorised to enact only on the wishes as they are completed. For example, the first directive could be that in the case of an extreme medical occurrence the instructions regarding resuscitation. Then as each section is completed regarding other health and medical care treatments they can be enacted on a accumulating basis until the document is finalised.
There may also be a need to have an indication that an ACD is in existence in case the nominated person is not readily on hand. For example, a card or small document that is attached to a refrigerator similar to the card that indicates the major medical conditions and medications for emergency responders or the little card for a purse or wallet that indicates an organ donor.

I wrote my own Advanced Care directive some years ago based on a book I got at the post office. I have never had it "witnessed" or signed by a JP because (1) it is very personal and I don't want anyone to read it until it is needed, (2) I refuse to pay a lawyer (3) finding a JP or witness that I trust is impossible anyway. It needs to be made EASIER to write for all Australians, it needs to be lodged somewhere where privacy can be ensured but where it can be accessed when needed by the nominated people (eg, lawyer, family, doctor, hospital, etc). Nobody but me knows this document exists and I have no way of making it known should I become unable to manage my affairs. It is almost pointless, but at least I have tried.

Why is the witness still required to hand the information booklet to the person making the ACD? Typically the document has been completed before the witness is asked to witness. Rather have the person submitting g the ACD swear that they have read and understood the info document and also have the substitute decision makers swear to the same before they sign.

We’ve looked at filling these forms out but they’re complicated and take so long.
Something more concise would be much better.