Wednesday, 22 September 2010

My thoughts on voluntary euthanasia

This week for Back to School, Back to Blogging, KludgyMom has us writing a post from the Idea Bank. If you are suffering from Bloggers Block, you should check it out.

I have chosen to write about Voluntary Euthanasia.

While it is a heavy topic (perhaps too much for those of you reading this over your breakfast), it is one that I have thought a lot about.

I'm not here to be controversial. These are my thoughts and I am well aware they may differ from yours. I am not trying to convert anyone to my way of thinking. I am just putting my thoughts down. You can choose to read them, or not, but I would love to hear yours if you want to leave me a comment.

I work in the Health care system in NSW. Most of my clinical work has been within the neurology and neurosurgery contexts.

I have worked with many people who have suffered terribly.

They have most commonly had strokes, car accidents, brain cancers, or progressive neurological diseases.

My heart broke for each and every one of my patients. Their lives were irrevocably changed.

Some of them recovered.

Some of them improved.

Others faced a life unable to speak or needing a ventilator to breathe or watching their bodies slowly deteriorate as their neurological disease got progressively worse.

All of my patients made me think. What would I want if this happened to me?

I used to come home from my job and say to the Geege, "If I'm ever helping someone change a tyre and get hit by a car and have a severe closed head injury, turn the machines off" or "If I ever suffer a frontal stroke and am unrecognisable as myself, you may leave me". I had a list as long as my arm of examples of medical situations that I decided weren't for me. Verbal Advanced Directives if you like.

The Geege would laugh at me and say, "Yeah. Sure love". But I think he got the picture. I don't want a life of suffering.

I have watched a lot of people whose families couldn't make these tough decisions put their loved one through months of pain and anguish.

I have watched elderly people openly wish that people had "just let me go. I've had a good life. I don't want to live in a nursing home" after suffering a massive stroke that rendered them bed bound, incontinent and confined to pureed food for life.

I have seen the likes of Motor Neurone Disease turn perfectly capable, ambitious, successful, young people into completely dependent, ventilated, anarthric*, aphagic** individuals in a matter of months.

I have also watched doctors make daily decisions about who is 'treatable' and who isn't. Not for resuscitation added to the medical record. Feeding withdrawn. Medications withdrawn. If they can do it, why can't a lucid, terminally ill person decide that they have had enough?

Why can't they decide that they want to take control of their death before their illness takes away their faculties?

Why can't they choose to be helped to die?

In May 1995, the Northern Territory became the first place in the world to pass right to die legislation. The Rights of the Terminally Ill Act lasted 9 months before being overturned by the Australian Federal government.

Today, Voluntary Euthanasia and Assisted Suicide are illegal everywhere in Australia.

But Voluntary Euthanasia is back on the political agenda. Western Australia is debating it in the Senate right now. They are having a 'conscience vote'. I would like to see some pretty tight definitions around who is 'eligible' and how the process would work, but in principle, if I were part of the vote I would vote to introduce this law.

I am sure many of you think I am a crazy extremist, but, respectfully, if you had seen what I have seen I think you might think differently.

Tell me, what are your views?

* Anarthric - no speech
** Aphagic - no swallow


Sarah G said...

I totally agree with you on this.

Nichole said...
This comment has been removed by the author.
Maxabella said...

I don't think you're an extremist at all. I 100% agree with you. With the right parameters, I agree that legal voluntary euthanasia is the way forward for humane, civilised societies. The debate needs to be opened because medical inventions and improvements have meant that patients are 'alive' when previously they wouldn't have 'made it'. So we're faced with making a moral decision about something that wouldn't have occurred not so long ago. I wonder where religious objectors stand on that?

life in a pink fibro said...

Great post. Laid out logically and without hysteria. The trouble with this area is that it's not black and white. There's a lot of grey. But in the circumstances you outline here, it seems madness that we make people suffer to the degree that they do.

Jess said...

I whole-heartedly agree. In 1999, at uni, I was doing a bioethics course and had the pleasure of having Dr Philip Nitschke give us a lecture.

He told so many moving stories about that time in the NT. About a guy, an ex-postie, who was dying of cancer, and rode his old postie bike all the way from Adelaide to Darwin to die peacefully, under his own terms.

I agree - tight controls need to be there - but why should we not have the right to die as we choose?

We just put our horse to sleep today after having her for 21 years, as she had a long-term foot infection that could not be healed. I am still on the verge of crying -but it was the right thing to do, for her. Why do even animals have the right to die, but we don't?

PinkPatentMaryJanes said...

Great points in a very thought-provoking post. I'm with you - it should be up to the individual and the family within strictly defined parameters - but there needs to be a choice. I have no qualms about leaving any usable bits of my body to be used by others after my death, and would also like the right to undergo voluntarily euthanasia in specific circumstances.

Anonymous said...

Whole heartedly agree on this one with you.

I watched a dear friend die a few years back from cystic fybrois. She had had a lung transplant a few years earlier, but her body had just had enough. Over the course of a few painful weeks, her lungs slowly turned into what resembled shards of ice, she was so 'drugged' up that it was like she had died weeks before her actual death.

There certainly needs to be super tight restrictiveness in the process of establishing eligibility, but it needs to be there as a choice.

Lucy said...

I have not (thankfully: I could not cope) seen what you have seen. I do not think you are a crazy extremist.

But I have seen close family members die slow and painful deaths. The slow and the painful could've been avoided.

The thing that irks me most about the current state of play here in Australia is that the CHOICE is not available to those who need it, & this choice is available to doctors.

(My grandfather begged to be "made comfortable" and was given a "theraputic dose" of morphine, which sent him on his way to heaven. This was in 1980. His wish was granted. A rare case, I suggest.)

Jen said...

I don't think you're extremist either.
I think it needs to be regulated and with strict controls, but we should have a choice.

DancingInTheRain said...

I must admit I have not given this topic a lot of thought. When my mother died five years ago she was in pain towards the end. She was asked if she wanted her morphine increased and it was made clear that this would make her slip into a coma that she would not wake up from. I still remember finding this very confronting and realised how much pain she must have been in when she said yes without any hesitiation.

MultipleMum said...

@Nichole Thanks so much for your thoughts. It is great that the world is full of people who think differently don't you think? I agree that there is a distinction between being taken off life support and Euthanasia. Likewise, palliative care and other situations where doctors call a NFR order are also different. In hindsight, the examples I used in my post do not make that distinction as clear as I have it in my mind.

My point was about the suffering that terminal illness causes. To me, VE is about choosing to end things before this suffering gets unbearable. While you can still make the decision.

What @Dancing in the Rain spoke of with her mother is a typical end of life decision for many in a palliative care model. If we had legal VE, she may have been able to choose to end things before the pain was so severe.

alliecat said...

I don't think you are extremist at all. But I work in the healthcare profession too, and I think it gives us a very real, very different perspective on quality of life, suffering and end of life care. It is an emotive topic and I realise not everyone feels the same way. When faced with making life and death decisions about loved ones the lines get blurred, it is a very difficult time. An advanced directive from the patient themselves would make that time much easier.

I think this country is a long way off seeing anything like that introduced here though, it will be interesting to see.

Emma said...

I have to agree with you. I have also worked in aged care and my husband still does and it is hard not to feel this way after seeing this side of life.
P.S. Snaps for such a well presented argument and nicely written piece.

Rebecca said...

I'm with you 100%. There are so many ways that I wouldn't want to live my life...why should it be up to someone else to make me live if I don't want to?

Ellie Tat said...

At this point, I am very much pro life. But then I also know to never say never. Almost everything that I thought I'd never do I have done. So if I am faced with this type of situation, who knows, I might have to change my mind.

x0xJ said...

Nope not crazy, i am 100% in agreeance. It's a hard thing definately, but it's not much of a life if you're not even aware you're alive, or you can't breathe on your own, you know?

katepickle said...

A heavy topic but one that I have discussed with my family many many times. I am all for choice... how we legislate to allow those choices is tricky but I hope someone smarter than me is able to figure that out.

Kristen said...

I'm impressed that you tackled such a difficult subject. Generally I would not support voluntary euthanasia but my ideal world is very black and white. I would imagine that when this type of decision becomes personal or affects a close family member that the situation quickly becomes very gray and the "right" answer is less clear.

Nichole said...

Yes, ma'am. Got it ;)
I guess...when I hear 'euthanasia' all I really hear is 'suicide.' I sympathize with those suffering. For me though, every choice I make boils down to my religion. I just had to comment, because it was a great post.

Jackie said...

I fully agree with you. Nobody should have to suffer a slow, agonizing death.

And I commend you for being able to do the job that you do. It has to be an incredibly difficult job and one that I know I could not do no matter what.

Anonymous said...

awesome blog, do you have twitter or facebook? i will bookmark this page thanks. lina holzbauer

•´.¸¸.•¨¯`♥.Trish.♥´¯¨•.¸¸.´• said...

I agree in principle. I was a nurse too not with brain injuries /disorders but children. I saw some who lives of suffering and things done to them to keep them alive.
It was hard sometimes.

On the other hand ...
It scares the life out of me (no pun intended) and it is my greatest fear because I actually have a neurological disorder of sorts.
I just wouldn't want anyone to make the decision for me, on my behalf, at least that my well self says.
I am all for choices though.

My uncle had residual brain injury from benign brain tumour surgery (he had same disease I have NF1) and at 31 ended up in a decrepit nursing home because my elderly grandparents couldn't care for him. He was only 10 yrs older than I was (21).

He died alone ONLY 3 weeks later unexpectly... he had given up in my opinion on his own self care but he could think, talk (slurred) , walk a bit supported and do some things - he just stopped wanting too. Life was hard for him - maybe he wanted to die.

georgi said...

visiting from the rewind ... i like how you have approached this topic. Without emotion, simply and honestly. I think I agree with you. The biggest problem I see for voluntary euthanasia is outlining when a directive is made, and when it can be changed especially when the disease involves the onset of dementia. What if they change their mind? I have watched someone I love deteriorate from a brain tumour and it was so sad. she made the decision to stop her therapy (she was losing) but we knew she always wanted to live. Always. And yet the decision was right. It's not an easy topic.

The Mummy Hat said...

I agree it should be available but I also think there's so much grey area here - which is one of the reasons why it's still illegal. Who wants to sort through that? Who wants to define the criteria for who is and isn't eligible to die on their own terms?
My Nanna was able to die on her own terms thanks to her repeatedly complaining of severe pain in hospital. She already had breathing difficulties so it was not a surprise to anyone when she stopped breathing after several hours and several doses of morphine.
After 4 months of fighting she knew she was never going home, so she choose to 'speed up' what was a loosing battle.
I was devastated to loose her but I found peace in knowing she had some control over her situation after months of watching her lie in a hospital bed, helpless as her body slowly gave up.
I hope someday somebody has the strength to sort through all of the grey and make it work.

Diminishing Lucy said...

I loved this post then, and I love it again now. So very rational.

Andrew and I talked about this after you posted.

We agreed we would book the train to Darwin...


todd carr said...

yes, we all should be free to choose. government doesn't know what is best for us. If I want to live in a pink house, then fine! I should be able to buy a bucket of pink paint. My neighbor doesn't get a vote, its MY house! How can you make suicide illegal? gonna throw me or my dead body in jail? Government has better things to worry about.

Salamander said...

This is brilliant. Not extremist, not in the slightest. Of course there would need to be strict controls - we live in such a nanny state, why would we assume otherwise??? Ha.

As everyone above has already said, no one should have to suffer. I actually think withdrawing medications and nutrition is terrible. Talk about adding to the suffering.

My grandfather died from cancer. When he was admitted to hospital, virtually unconscious, my grandmother begged the doctor to give him morphine to make him comfortable. The doctor refused. I could never understand why he would refuse an old man, dying in extreme pain, a last measure of comfort. My grandfather was a brilliant medical man, who helped thousands. He deserved the chance to find peace much more quickly than he did. I only hope that karma will find that doctor.

Life In A Pink Fibro said...

I think most people would agree with you, based on this post. Really.

Visiting from the Rewind.

Mrs Catch said...

I absolutely agree with you. It would be devastating, especially as a young person to be just waiting to die.

Hopefully, you'll all see the relevance, but can I butt in here and publicise one of my favourite charities: YOUNGCARE.

Youngcare builds residential units to house young people who are too ill or incapacitated to live at home. So they don't have to go into an old people's home. Which makes a huge difference to their quality of life. Google them and donate. It might be you or your kids one day...

Donna said...

Bearing witness as you have, I can 100% understand your thoughts on this. I'd never wish myself as a burden on to any of my loved ones and although I know they'd never see it that way, I know that is what it would boil down to being.

Thanks for this thought provoking post - I'll be pondering it all night I think!

Miss Pink said...

I am going to comment again having had new thoughts.
I agree there needs to be this option for certain cases. Maybe there needs to be a court system drawn up to specially handle these situations and decide if a condition is enough for euthanasia.
I agree with you about the situations you fear. I fear those too and would hate to burden my family with that and not being able to communicate I want to be let go, or simply not recognising them or life. I don't think that it's a light decision, but something that has to be given time (as in maybe coming out of a coma you cannot communicate for a short time, a couple of weeks say because you are too weak, but given a bit of time you remember and understand everything entirely. So I do think there needs to be a period to allow for this change, this chance to regain).

What is quite funny is no one bats an eyelid if someone finds out they have cancer and opts to not forego treatment. Isn't that euthanasia?
Cancer is a shitty shitty disease, but people accept you don't want to fight. Yet they expect patients who have major strokes or brain injuries to fight? I think those would be harder to fight.

Anonymous said...

I have to agree with you as well. When I was preparing for the birth of my child, part of the paperwork that came from the hospital included an advanced directive form. I filled it out and both my husband and I have been very clear with one another that we do not to live if we are no longer "living".
I can't imagine what it would be like to have one of these degenerative disease and know that I would be reduced a shell of a person who can't care for themselves. I would never want to live like that or for my family to see me that way.

Mel said...

This is a topic that has been raised in our family quite a bit recently. We lost my Grandfather just over 2 years ago - he was 90, so had a good life, but he wasted away to the point where he couldn't talk, couldn't feed himself, and you could see in his eyes that he was trying so hard to communication but his body wouldn't respond. After he finally passed away (it was a blessing in the end!) my Mother said that she never wanted to go through that and that she wanted to be able to write a clause in her will that gave us the right to assist her to die if she ever ended up in a vegetative state. At the time I told her there was no way I could do that, but now that I have kids of my own I know that I wouldn't want them to see me go through that either, so I understand more where she was coming from. I'm not sure where I stand personally, but if the motion came to vote, I would definitely vote in favour - everyone should have a choice! After all, people do commit suicide - those that end up in a vegetative state don't have that luxury. And as my Mum so kindly pointed out, if an animal ends up that sick, we put them down and 'out of their misery' - so why aren't we so humane with each other? Is it humane or just selfish?

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