How to start a conversation about end-of-life care

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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, such as 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 are often the best way to go, and give 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.

Are you comfortable talking about death? Have you had the ‘planning’ conversation with your loved ones?

Associate Professor Melissa Bloomer has more than 20 years’ experience as a registered nurse in intensive care, 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.

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Written by Melissa Bloomer

4 Comments

Total Comments: 4
  1. 0
    0

    May I comment on the content of this article rather than the grammar even though I am a Grammar Nazi…
    I am very comfortable in talking about death and am tired of the euphemisms associated with it. The person didn’t “pass away,” they DIED! Friendly fire is murder. Ethnic cleansing is genocide. A fallen soldier was murdered.
    Anyway, there is an organisation in this country called “Dying to Know.” Anyone can organise a meeting to encourage people to talk about death. They also have meetings with speakers.
    I don’t need this excellent organisation as I am already comfortable with talking about my death, euthanasia, and I have an Advanced care Directive of course.

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      My feelings are similar. I think it may be an age thing – I am 80, and my group of friends are all very easy about discussions around death, euthanasia, and funeral planning. Our children, mostly aged between 40 and 60, are definitely not as comfortable with this kind of conversation. So our concern is that the plans we ask them to follow on our own death may not happen as we wish. One friend, for instance, has told her children that she doesn’t want a funeral. Her sons are horrified, and have told her that they will be organising one in the event of her death. Fortunately she won’t be present at the time to be upset about it, but it still is a problem to her.

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      Ignore my first comment about grammar! it was in response to the first commenter which was solely about the grammar of the article and which was quite rude.

      Yes Jenny, one’s children. I think both my daughters are OK with my wishes. I say “think” because one is a doctor and would be my advocate. The other doesn’t say as much but would also not allow me to suffer unnecessary interventions (as my ACD sets forth). They know I don’t want a funeral. I hope they just go out to dinner with their families instead. It’s their choice ultimately, as funerals are for the living not the dead. This is what I did for both my parents who had no funeral plans or wishes – an afternoon tea for one and a dinner for the other to honour their lives.

      Age? Interesting comment from you. I agree, except my grandmother refused to make even a will as she said it would mean she was going to die. She found just talking about a will taboo! We all die don’t we!

  2. 0
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    I am in so called end of life care. I’m going to die sooner than later. I’ll go out with dignity. I dislike euphemisms.

    I was advised by a doctor to get advanced care notice documentation sorted a couple of years ago. I downloaded it from the net. I filled it out. I had the doctor fill her part out. My wife and daughter were signed as having enduring power of attorney. Everything was all present and correct. I took the paperwork to a J.P. That’s when the fun started. Six copies were needed. I asked why. No suitable answer was given. The J.P., a superior type of person, had a conversation with her colleague. The original document I had was signed up. That was all. Suited me. The federal election was on. Out of the blue she informed me that Labor was going to introduce “Death Taxes”. What nonsense I told her. I emailed her organization. She was counselled. She should’ve been sacked.

    I’m a dying man. These ghouls want to make themselves tin gods. The technology of computing and photocopying seems to open some strange pathways for self aggrandizement. Time was once when dying was such an uncomplicated affair. Cut the bullshit people. Let’s have voluntary assisted dying, fewer jumped jerks posing as important personages, and less bloody paper.


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