Kari Bourne

Why I was prepared to help my mother die

In light of a call by doctors for an open discussion on end of life care, APN journalist Kate Webber shares her own heart-wrenching story.

I'M SITTING by my mother's bed as she slowly, inexorably dies, each day, each breath, each moment moving closer to a time when she'll utter her last breath. 

There's a slight smell of urine in the air, the eau de cologne of any aged care facility.  The woman across the hallway, who has dementia, is wailing that she wants to die.

My mother is lying still, eyes closed, her failing pulse fluttering in her neck. Her eyes are dark and sunken, her shoulders bony. Her abdomen, huge with tumours and fluid full of cancer cells, is pushing up her blankets. It's the only part of her that has any bulk left. As I touch her hand, she briefly opens her eyes, smiles weakly and whispers hello with a dry mouth.

I watch her, drink in the sight of her still being alive, knowing it could be my last opportunity. And I silently rail at the pointlessness of such a slow march towards death, at there being no other option but to watch her slowly starve to death, or die from the cancer, or whatever it is that's happening down at a biological level.

It's such a ridiculous way to die, lying there for weeks - comfortable and pain-free as far as I can tell - but just lying there.

Why? What difference does it make if she dies today or next week or in two weeks? What will have been gained by "keeping her comfortable" rather than sending her on her way? I sometimes feel like leaping up and doing my best manic Basil Fawlty impersonation: "What's the bloody point??!!"

It baffles me that in a country where we put so much effort into stamping out animal cruelty, where we put our animals to sleep if they're suffering, that we don't spend more time trying to come up with better options for dealing with our dying loved ones.

Other countries have euthanasia laws. Why can't we? Do we really think that if options were introduced, there'd be a rash of people putting their parents or aunts or uncles or grandparents down for convenience? Really??

Anyone who has watched a loved one suffer through weeks or months of a terminal illness would surely know what a big decision it would be to decide to pull the pin, and wouldn't take it lightly. Some would choose to let things unfold naturally, and that's okay, for them.

When my father went through the same thing three years ago, I spent a lot of time thinking about where the line was for me - how bad would it have to get for me to decide it was time for him to go, if I had had the chance to decide?

Three weeks before his death, watching him writhe in pain, his brain addled with drugs, no hope in sight, I thought I'd reached that point. But then he rallied, and we had some more good days. After the good days though there were more bad days, and I'm not sure that anyone gained much out of those last few weeks.

I found the line a few days before his death, when he was no longer able to get out of bed and had to wear a nappy.

That's the line for me - once the nappy goes on, it's all over. Watching someone who was a giant in my life - who cared for me and knew everything, who was quiet and dignified - squirm in discomfort because he'd soiled himself, or seeing him reach to make sure the nappy was in place as he peed while lying in bed  - where's the dignity in that?

I imagine people suffering from dementia live through the nappy phase longer than someone who has cancer, and I couldn't comment on where the line would be for them - but there are plenty of people who do know.

If you missed journalist Tracey Spicer's letter to her late mother last year apologising for not having the strength to put her beloved mum out of her misery, it's well worth a read.

It highlights how badly we do death in this country - not from a healthcare perspective, but from a "let's talk about this" perspective, a "death is a part of life, let's not shy away from it" perspective. 

So many people die after a long illness - why are we not talking about this? Why do we let people just linger on, when we know it's all over anyway? When someone can't communicate, when the essence of who they are has leached away, are they really still living?

I'm not for a moment suggesting ending someone's life should be easy, or compulsory. But for people who would like the chance to choose for themselves or a loved one, we should at least start discussing how that would happen. What safeguards would be in place? Who would have a say? Who would take on the responsibility of seeing someone on their way?

It's a complex, difficult issue. It's not just a matter of saying, "Yes, I support this" or, "No, this shouldn't happen". 

In Australia we tend to hide death away and speak of it in hushed tones, if at all. It's way past time to bring it into the light and have some frank discussions about how we'd like to die. 

When Mum was sick my brother and I were allowed to decide when to stop giving her lifesaving medical care, when measures that could prolong her life would be stopped. To me this seems like the same thing as euthanasia, but just with a different time frame.

And well before the end, Mum was allowed to indicate that she wanted no extraordinary measures taken to save her life, so we already have legal documents in place to deal with some of these end of life issues.

I'm not suggesting for a second that everyone with a terminal illness should be rushed towards the grave. When dad was sick, I honestly couldn't have made the decision to let him go anyway, even if I had had the option. It would be an immensely difficult decision to make, and people would have to be sure they could live with the consequences and regrets and what ifs.

But with mum, who I loved dearly and passionately and never wanted to let go, I think it's a decision I'd have been able to make. I'd seen it before. I knew the stages, and I knew how it ended. And I wondered how she was feeling, what she was thinking, as she lay there day after day, unable to form a clear thought, let alone articulate it.

Did she want it to end? Or was she fighting to hang on to every last breath? If euthanasia was legal, we could've had a discussion about the end long before we got there, and I'd have had some clue.

I'd just have liked the option, is what I'm saying. And I'm sure she would have too.

Kate Webber's mother died in June 2013 at the age of 83 and her father died in 2010 at the age of 79, both from cancer. Most of this article was written in the days before her mother's death.

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