My Dying Uncle Talks Life, Death, and Australia's First Year of Legal Euthanasia

"It’s very surreal locking in a date to die. But I haven’t had any doubts, because it’s just a question of timing."
October 21, 2020, 2:41am
VAD
Photo of Don supplied.

Australia has a complex relationship with euthanasia, or voluntary assisted dying (VAD) as it’s now often called. The states of New South Wales, Tasmania and South Australia have all debated VAD bills and rejected them. But the mood is beginning to shift. In June 2019, Victoria became the first state in the country to legalise VAD, while a similar scheme will come into effect in Western Australia sometime in mid-2021.

Australia is one of just a handful of countries and US states where the option exists. In the first 12 months since it was legalised in Victoria, 124 people have ended their lives through VAD. And in a few weeks’ time, my uncle, Don, will also die this way.

In mid-2018, Don was diagnosed with motor neurone disease, also known as ALS or Lou Gehrig’s disease, a condition that causes the muscles to weaken and waste away. His condition has deteriorated significantly in the last few months, and today he struggles to move. As his symptoms began to rapidly progress and his neurologist gave him between six and 12 months to live, Don began the formal process of applying for VAD and is now in the final stages of that process.

I spoke with him about what it’s like to face your own mortality, and prepare for an exit that’s still illegal in most of the world.

VICE: Hey Don, can you tell me a little about your condition?
Don: I’ve got what they’d call typical motor neurone disease, which basically mean your limbs start to stop working and you have muscle deterioration. The thing that actually kills you is your lungs because you either get pneumonia or you just stop breathing. I would say that my deterioration wasn’t too bad until about December 2019. If you recall we got together and I probably wasn’t too bad at Christmas.

Yes, you weren’t too bad then. But that was the last time I saw you in person.
What happened, as we moved into 2020, around February, March, that’s when everything fell off a cliff. All of a sudden, I knew I was sort of getting to the business end of the disease.

So how long have you been thinking about VAD as an option for you?
Euthanasia and assisted dying has always been in the back in of my mind, in the sense that I always thought it was a person’s right to choose the manner in which they die. So I had always thought to myself, if I ever got sick and it was going to be a horrible death and I had the opportunity to avail myself of any legal option that would end my life, I would.

How are you feeling about the decision? Is it something you have to prepare yourself for emotionally as that date approaches?
Once I became aware that I was diagnosed with MND, it was sort of tough, but then I became more accepting of my death and I began preparing for it. And the way you prepare for it is to almost see yourself dying and letting go, because you’ve got to prepare yourself to let go, and not be attached to things. Everything that you own, everything that you know, everything that you were, will go. And that’s a journey that you will take on your own.

The most important thing that I’ve always said to people is there is a difference to being alive and living. So at the moment, I’m alive. But my world for the last four or five months has been a 10 metre radius from this chair. I’ve got the bathroom, my bedroom, and the backyard. And that’s only going to get worse until I’m unable to move at all. And if you compare that to the type of person I was—an avid golfer, I loved the surf, I loved to get out and have a beer and basically live life to its fullest—unfortunately this disease doesn’t allow you to do that.

How do you have this conversation with your family? How do they feel about it all?
Once I was diagnosed, or not too long afterwards, I just put it on the table. At first I didn’t look sick, I didn’t feel sick. But then, slowly, slowly the physical aspects started to kick in, and then I thought “well shit, this is no joke, this is really going to happen”. It was always my intention and I’ve always made that quite clear to the kids and to [my wife] Vicki. And they were supportive, but it was out of sight, out of mind, you know what I mean? But from about March, it was clear to them that I was getting worse. In the last two months it became very evident that this was the pathway I was going to take. And now, they’re facing into it along with me.

How’s your wife handling it?
Yeah look, it’s hard. I think Vicki is probably more prepared than what the kids are. I’ve tried to prepare them as much as possible. They’re sort of stoic in their own way. I think obviously now they are aware that this is going to happen. Are they prepared for it? I don’t know. And I think they’re going to have to be, because it’s going to happen. As Vicki said to me, “from your perspective, you’re prepared for it. But we’re the ones that have to actually live on after you’ve gone. We’re the ones that have to mourn you and grieve you. You’ll be gone”. And I understand that. So there’s this whole thing: I’m only looking at the end game, whereas they’re looking at my death and the journey that they have to take after that.

Knowing you have this certain amount of time left, has it changed how you live?
Not really. I cherish each day and I cherish the time that I have here with Vicki and the kids, but for me it’s probably more the end game and just getting there. It hasn’t really changed the way that I think, because my thinking about death has been set for a long while. And if I look back, I am the luckiest guy in the world. I would love to have another 20 years, 25 years, but it doesn’t work like that.

Since you’ve begun the process of applying for VAD, have you had any doubts?
It’s very surreal locking in a date to die. You sometimes take a step back and think “what the fuck?” but I haven’t had any doubts, because it’s just a question of timing. I’m going to end up dead either way. If I didn’t take the VAD path, I would then deteriorate further. So I’ve never had any doubt, because the end game is the same, it’s just the manner that I get there is going to be a little bit quicker, and certainly far more comfortable than a prolonged death that would certainly have a more harrowing impact on my family.

Once you’ve made this decision, how do you go about telling people? Do you have a playbook for letting people know?
The short answer is no, and I’m still trying to come to grips with that. This is a pretty unique situation. Often you don’t have time to consider the way that you’re going to leave this world. Generally it’s thrust upon you. But with this situation, what do you do? I think what I’ll end up doing is as I become more aware of the timing I’ll just let it out there.

When you get crook, you feel pretty useless, right. Then all of a sudden, I thought to myself that I’m not useless. If anything I’m opening up people’s eyes to, I guess, a cycle of life and death, and the death that they’ll invariably face. So maybe that’s my contribution to this whole game.

Is it in some ways daunting to think about that groundswell of mourning that might come in before you’re even dead? The letters, the calls, that sort of thing?
What I don’t want to happen is I don’t want a line of people out the front door saying “we’ve come to say goodbye” and all that. To some extent Covid-19 has been a godsend because I haven’t had people coming and knocking on the door. One of my mates, my close mates, who I haven’t really seen since the end of February because of the lockdown, he said “mate, I want to come and see you” and I said to him “look, I’d rather you remember me physically the way that I actually was, rather than the way that I check out, because I’m not the same person”. He understood that.

What I don’t want is all of a sudden this wave of sympathy and people ringing up, “I’ve just heard, I think you’re brave”. Ugh, that shits me, “I think you’re brave”. It’s got nothing to do with fucking bravery. It’s just a decision that you’ve made. What’s unusual about it is you have the time to consider and think about it. Quite often today, you have a heart attack, a car accident, you’re sick for three months and then you just die. It’s really quick. I’ve had two and a half years to think about this. I can understand people feeling sad, I get that. There’s going to be an element of grieving and sorrow, and that’s fine, I accept that. I’m comfortable so I hope other people are too.

This is probably the last time you and I will speak face to face. Do you have an idea of how that last goodbye will go with people?
For me the so-called last goodbye is pretty simple really: thank the person, and wish them nothing but the best.

Some people are still against VAD, with the argument that “no matter how hard life may be, every life is worth living”. What would you say to those people?
Look, I could be short and sweet and say “fuck off, this is my life”. But I understand what they may be thinking about. It’s great to be an advocate for someone, but unless you are the one who is actually going through it, you don’t actually know what that person is going through. From my perspective, my body has shut down, and I feel like I can no longer contribute to society. I understand when people say every life is precious. I’m not denying that. But I think the person living that life has the right to choose how they end that.

You haven’t settled on a date yet, but you do want to do it at home. What’s the process?
I will select a date and then, because my arms don’t work, I’ll have to have it administered by a physician. Now, I’m not going to have a cast of thousands here. It’s going to be very, very small. I suspect it will be immediate family. It will be a question of me saying, OK, I feel it’s now time. I’ll make my way to wherever it’s going to be done. I’d say for me, comfort-wise, the best place will be to lie on the bed. I’ll be given a relaxing shot, just to calm things down, and then I’ll be given an anaesthetic, which will put me to sleep. After that, the medications will be administered to stop my breathing and create death. I’ve been told it’s fairly quick.

Do you have an idea of how you want to spend that last morning?
Nah mate. There’s nothing I want to do, apart from maybe sitting outside in the backyard. I’m not going to go down the street in a wheelchair. Truth is I’ve been locked up here so long, so this is my next adventure really. This is the adventure that I take on my own. I just feel I’ll wake up and do it.

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