How to start a conversation about end of life care

Australia is widely-known as a death-denying society. We don’t like to hear about it. We don’t like to think about it, and we most certainly don’t like to talk about it. The risks of COVID-19 are a reminder that we need to get better at conversations about what we want to happen at the end of our lives.

Written by Associate Professor Melissa Bloomer

There’s no doubt, the Coronavirus Pandemic is changing every aspect of life.  Very few Australians, aside from those who have lived or fought in conflict zones, will have experienced a threat of this scale before. It is also likely very few Australians have faced the very present threat to their own health in this way before.

It may explain why Australians aren’t very comfortable talking about death – or our own deaths specifically. Australia is widely-known as a death-denying society. We don’t like to hear about it. We don’t like to think about it, and we most certainly don’t like to talk about it. Our dislike for all things death-related is one of the reasons we have one of the lowest rates of organ donation in the world, and even lower rates of Advance Care Planning. The risks of COVID-19 are a reminder that we need to get better at this.

Starting is easy. Have a conversation. Identify the people in your life who are most important to you. This may include your partner, your parents, your siblings, your children or your best friend. When you talk to them, make sure each of them knows who all the other important people are. Don’t assume they know.

How you start the conversation is important. In my house, we talk about the ‘Mack truck theory’.  This means we talk about what we want to happen if we were hit by a Mack truck. For some of my family, this makes the conversation a whole lot less scary. Having shared this with you now, I want to reiterate that this is not about trucks, it’s about starting a really important ongoing conversation about what you would want to happen if something bad happened to you, like getting sick from COVID-19.     

What you specifically talk about is a personal choice. If you or anyone you know has been really sick before, or admitted to an intensive care unit, then your perspective is probably different. If you have existing health problems such as a chronic illness, this might also change your expectations about how you want to be cared for. If you’ve battled, or are battling, significant health challenges, you might say that being kept comfortable is what is most important. If not, then you may want all the bells and whistles of an intensive care admission (if necessary) to save your life.

It’s also important to choose someone who can make decisions for you, if you get sick. Choose carefully. You want someone who can keep a level head, and act on your wishes. If you think your spouse won’t cope with the responsibility, or your sibling will overrule your wishes (because they know better), then pick someone else. Once they are willing, tell everyone who your ‘nominated decision-maker’ is, and what you have agreed to.

I want to reiterate that you can’t put this conversation on the ‘to-do’ list for tonight, tell everyone over dinner, and then tick it off the list. Conversations like this take time, tact and tenderness. You may have to have multiple conversations with your family as a whole and with individuals before people are comfortable. Some will be willing to talk about this more than others, and that is okay. There is no rule book on this. Several conversations in small doses is often the best way to go, and gives your important people time to digest what you are saying and why it is important to you.  

At least in our house, if one day soon that Mack truck (AKA COVID-19) comes screaming in my direction, all of my important people have some comfort and confidence to know what I would want, and how to advocate for my care.

 

Dr Melissa Bloomer has more than 20 years’ experience as a registered nurse in intensive care (ICU), general acute and sub-acute care settings. Since joining Deakin University in 2016, her primary research interests have included end of life care in acute and critical care environments, including management, communication between clinicians and with family, decision making and the preparedness of nurses to deal with dying and death. 

Read more:

HelloCare: How to start a conversation about end of life care