The Ticking Clock – Advance Care Planning

I can’t remember who said that famous quote…“time waits for no man (or woman)”, but I’m sure many of you out there have heard it and probably know its origin.

I don’t think there are too many people on this planet who don’t feel the seemingly innate ‘tick’ as we grow and age.

At this particular moment in time of COVID-19, a lot of us, especially those working with the elderly and vulnerable, have been thrust into a time of urgency. Urgency not only about dealing with a pandemic and a total upheaval of what we used to know as normal, but also the thought and impending weight of potential harm, death, loss and grief.

Now I’m no expert, but I have racked up a few weighty experiences over the years and am not new to grief, loss and regret.

One thing I have found that helps is looking for or seeking out ways to mitigate or put myself or others in some form of control. Many years ago, an old truckie I knew once said “sometimes it’s a matter of remembering your ‘ABC’.” When I looked at him quizzically – he simply continued, “All By Choice.”

This phrase has great relevance when we look at the sometimes very challenging topic of Advance Care Planning, which has also been elevated in this time of COVID-19. As promoted by the Department of Health, ‘Advance Care Planning (should) promotes people’s choice in and control of their future health and personal care.’

As providers you may have been experiencing more requests for help in this area, whether that be to provide more information for consumers and their families or assist more directly where someone is in your care and needs support to communicate and document their wishes, especially where they are distanced from their family for whatever reason. Throw a pandemic into the mix and the sense of urgency from all involved can move from a scale of one to ten very quickly.

My own personal experience in the last month has really brought this home. My own father, who is admittedly well past his ‘three score and twenty,’ had a major health event on Easter Monday. In a world of lockdown and me being nearly 2,000kms and three State/Territory border crossings away, the prospect of getting to see him looked extremely remote.  There’s a whole other story about what transpired next and the very surreal COVID-19 journey I undertook, including self-isolation at the other end.

A focus of my time once there was as an advocate and support person to ensure my father and our family were able to put things in place and ensure ‘Dignity and Choice’ were front and centre as much as possible within the limitations that we are all facing at this time of social and physical distancing, isolation measures and restrictions.

I really have had a look from the other side, and while the following is not meant as a lesson for providers – who I also appreciate are going through the toughest of times right now – I hope these insights and tips are helpful from whatever perspective you are looking from.

What’s in a name?

Advance Care Planning is and has been called many things and it’s important to communicate the intent and purpose in a culturally appropriate way. Some states, like NSW, also have the terms ‘My Wishes’ in front of the title ‘Advance Care Planning’. In the Northern Territory, their form also includes colloquial language such as ‘finish up’ when asking the question ‘where would you like to die/finish up?’

It’s also important to consider the language and questions, understanding that some terms and questions may be very confronting and may require discussion and explanation in a way that helps the person and their loved ones understand the question or information being asked, and enable them to document their answer in a way that is meaningful for them.

Roles

In addition to different names and phrases being used to describe a plan and structure questions, it’s also important to ensure people understand the meaning of titles used. For example, the role of ‘substitute decision maker’ (the person who is nominated to make decisions on behalf of the said person when they are unable to) may have different titles depending on the Australian state or territory you are in. Some of the titles used are:

• Medical Enduring Power of Attorney or Medical Treatment Decision-Maker (Victoria)
• Enduring Guardian (New South Wales, Tasmania, Western Australia)
• Enduring Power of Attorney (Queensland, ACT)
• Substitute Decision-maker (South Australia)
• Decision-maker (Northern Territory)

Responsibilities

The Aged Care Quality Standards (2) Ongoing assessment and planning with consumers also states that providers (b) ‘must identify and plan for the needs, goals and preferences of people they care for. This includes Advance Care Planning and end of life planning if the person wishes to do so.'

Advance Care Planning promotes people’s choice in, and control of, their future health and personal care, which is also fundamental to supporting their mental and emotional wellbeing.

Apart from individuals and their families, Aged Care Providers also have a role in managing this issue. During this time of COVID-19, Providers have been given additional direction in the recently released ‘Guide for Home Care Providers’, not only in relation to the Aged Care Standards. Providers should:

• ‘Identify consumers who have advance care plans, and keep a copy if possible.' This should also be documented in the consumer's emergency response plan.
• ‘Encourage advance care planning, and discussion between consumers, their doctors, and families to clarify wishes and intentions.'

And similarly, guidance for Residential Care providers also states: ‘Ensure that residents have reviewed their Advanced Care Directives, in consultation with relevant family members or persons with medical power of attorney.'

An Advance Care Plan/Directive also needs to be appropriately witnessed, e.g. by a medical or legal practitioner. Note – they should not be witnessed by Support Workers, Nursing staff or Managers. Refer to your relevant State and Territory documents and guidelines.

Resources

Check out the Advance Care Planning website.

And for specific information for your relevant State/Territory – click here.

I hope this information has been helpful. It’s a challenging topic for all parties concerned, however if people can be supported to have as much control as possible about their end of life planning, it is a good thing.

If you can think of someone else who might benefit from this article, send them a link. We’d appreciate it! And if you’re looking for more helpful resources, why not check out our Total Quality Package resource hub? We have culturally appropriate, tailored resources that are designed to make your job simpler and help you provide quality care to your clients. Click here to find out more.