The time is now to talk about what matters most - Rebecca Taylor

This article was written by Rebecca Taylor and originally published on HelloCare.

Advance care planning involves planning for our future health care and identifying an appropriate substitute decision-maker. This requires us to consider what matters most to us to help guide decisions about the health care we would, or would not, like to receive if we were to become seriously ill and unable to communicate our preferences or make treatment decisions. 

As health professionals, we know that the need for health care treatment does not always occur at a time when the individual is able to participate in their own decision-making. Over 50 per cent of people approach their end of life unable to make their own decisions. I witnessed this on a daily basis as an intensive care unit (ICU) nurse, caring for adults of all ages needing an ICU admission and unable to speak for themselves.  

Too many family meetings included phrases such as, “We don’t know, we never talked about this”. As ICU nurses, we would often talk amongst ourselves about treatment outcomes that we would not want for ourselves. To be honest, I don’t know that many of us ever had those conversations with our own families. 

Hundreds of these conversations contributed to my change of direction within nursing to provide specialist palliative care support to residential aged care facilities. Meeting with residents and their families in the last days, weeks and months of life I again found myself participating in conversations that included, “We don’t know, we’ve never talked about that”, or “We’re not there yet”.  I found myself realising that these conversations were still not happening. Families are left to make decisions at a time of great stress. 

As health professionals and care workers in all spheres of health care, we are well placed to prompt and support our patients, clients or residents we support to consider what matters most to them.  

Be Open, Be Ready, Be Heard 

Encourage the person you are supporting to consider the things that bring them joy, a sense of purpose, and make life worth living. Advance care planning is not just about how we want to die. More importantly, it is about how we want to live. That means considering what an acceptable quality of life may look like for each individual, what may constitute unacceptable treatment outcomes and deciding who would be the most appropriate person to make these decisions.  

This information then needs to be discussed with loved ones and the regular health care team. Preferences and a legally appointed substitute decision-maker can be detailed in advance care planning documents.   

The advance care planning documents can be uploaded to My Health Record and copies can be shared with substitute decision-makers, family, friends, carers and other health providers. This will enable documents to be accessed when they’re needed most.  

Associating advance care planning with the end of life implies it is not necessary until the last months of life. This misconception is supported by minimisation of the topic across primary health and chronic disease policy and a consistently low prevalence of advance care planning document completion.  

Normalising these conversations means they should start early, and occur regularly, while the person is in good health and able to be open about what it means for them to live well, and they can create a legally-binding advance care directive. If the person you are supporting has reduced decision-making capacity, involve them in the process as much as possible and detail their preferences in an advance care plan for a person with insufficient decision-making capacity.

As health professionals we have to be open to having these conversations - including with our own families. These conversation startersStarting advance care planning conversations early encourages us all to have an ongoing awareness and insight into our own health and preferences, and the ability to have ongoing conversations as health needs or treatment options change.  

Proactive participation of all health care workers, irrespective of discipline, is really needed. National Advance Care Planning Week, from 20 – 26 March, is the perfect time to start this conversation with the people you provide care for.  

Access an Advance Care Planning Improvement Toolkit for workplaces, and check out resources in 18 languages. You can also find events and online webinars available Australia-wide during National Advance Care Planning Week. You can also find events and online webinars available Australia-wide during National Advance Care Planning Week at You may even want to register your own event and have the chance to win $200 worth of catering. Free event packs are also available.

For free, personalised advice, to make a referral or request a printed starter pack, call the National Advance Care Planning Support ServiceTM on 1300 208 582 from 9am - 5pm (AEST/AEDT) Monday to Friday.