Choosing Death

Doug at GROPING THE ELEPHANT has written a worthwhile and personal account of the question of assisted suicide (http://gropingtheelephant.blogspot.co.uk/2013/02/groping-assisted-suicide.html). Its prompted me to get on a write a post that has been boiling away at the back of my mind for what feels like ages.

Doug’s post is worth reading so go ahead and read that now.

Like Doug, I have a personal story that has shaped my view on this subject. Reading Doug’s final paragraph I wonder if we’ve arrived at slightly different places on this subject, but our journey has parallels.

My Story

Prior to my mum falling ill with Pancreatic Cancer (https://confessionsofayec.wordpress.com/2011/11/11/death-of-a-much-loved-mother/), the worst day of my life was when I received a phone call while I was preparing to bury my grandmother to say my grandfather had died (https://confessionsofayec.wordpress.com/2012/02/01/my-wonderful-godly-grandparents/). The shock of the loss was so great I can still close my eyes and revisit that moment almost 20 years later and still feel the deep hurt and sadness in my chest.

When Mum was diagnosed with her cancer, she would have three more years and almost every day of those three years the impending loss and dread in my heart was even heavier than that described above. It is impossible for me to overstate how hard it was watching Mum waste away, to talk to her and notice how her mind wasn’t quite so sharp, to hear her say she was feeling okay and to know she was lying to try to make it easier for me.

I would dearly love to scrub those memories from my mind and never to have to feel like again. I would dearly love to rewind time and not have Mum suffer like that.

She eventually decided to abandon treatment because there was no longer any benefit in feeling grotty from treatment for a cancer that was killing her anyway. It was then that the dread got even worse. It is one thing to rationalise treatment for the terminally ill, it is something different entirely to see your parent there needing that treatment.

To be blunt, Mum was never going to have long once the cancer was diagnosed and those last three years of hers were awful to watch. She was only just into her 60s and until that point I expected I still had at least 20 more years of her and to have that ripped away from me so cruelly hurts deeply, it always will.

Dying With Dignity

What makes me stop and think about end of life care, especially for the chronically ill, is this; where is the dignity in this death? I do not believe that extending Mum’s last years and months increased her dignity. Quite the opposite in fact, there is much that was undignified, far better to die suddenly and not see it coming. If only we could all chose that way. It’s how her parents went and it spared us all much suffering.

Would I have rather she died at the start of those three years of suffering? That’s the obvious looming question, but it misses the point somewhat. Of course that’s not what I’d rather. What I’d rather is that she was alive and well today. Faced with not having that as a choice, at what point would I, her loving son, have pressed the button? I don’t know, it is not a choice I’d like to have to make if I’m honest.

I think this sort of decision is best made and agreed while all parties are in good health. That way the stress of the situation does not taint the decision being made.

Her last week was spent unconscious and breathing labouredly. When asked, the nurses were very reluctant to give an indication of when to expect death. That is cruel. That waiting was terrible but at least she was no longer feeling pain. The weeks leading up to that were even worse. There are simply no words I can use to articulate the torture I felt. Between the terrible pain and deep discomfort she felt, there were moments of lucidness, but that wasn’t my mother. That was a tired and sick old looking woman who resembled her.

The whole process of watching a deeply loved relation dying like that is something that I would love to erase from my experience entirely. It is an experience filled with sorrow and pain and there is very little love and joy there at all. The best times I’ve had with my mum are times that predate her illness. Those are the memories I cherish. There is no experience or memory of her during those years that I desire to hold on to.

What does make me sad is when I hear stories about loved ones who are so unable to let go of a sick relative, that they will prolong treatment for as long as is possible just to have them alive for a little longer. Where is the dignity in that? I say there isn’t any. It is not dignified to prolong a life at any and all costs. There is nothing dignified about existing in pain and semi consciousness, death kept temporally at bay by drugs. It is one thing to treat a cancer and give someone another few decades of life, delaying the inevitable by only a few months only increases the torment for all involved.

Yet despite all that, I would not choose to press the button at the start of those three years. She is my mother damn it, she’s not a pet so treat her with respect!

Won’t somebody think of the Pets!

As Doug mentions, pets and working animals get put down in cases like this and no one thinks it is cruel or wrong. It would be cruel AND wrong to make an animal suffer like that. Yet humans are special and because of that we force them to suffer greatly in death like this. In my Mums case, you could argue that the medication and treatment caused its own suffering. In effect, her life was extended so that more suffering could be administered in the form of a delayed death and more medication.

Why be so cruel and inhuman to one so loved?

On to the money.

Was it worth those thousands of taxpayer’s pounds sterling to extend Mum’s life for a brief period of pain? Not really if I’m honest. Yet I would still not have pressed the button. What I would have needed then was the knowledge beforehand that Mum and I had agreed what would happen. The problem was that it came unexpectedly and no was thinking about end of life until it was forced onto us.

Doug’s post brings up the very important issue of making the old and infirm feel that they are a burden and we’d all be better off without them. I would have been devastated if Mum had felt that way. The issue here is not that about offing Mum early to save the state money, its about not delaying what’s coming anyway to save her and her family from an artificially protracted and lingering painful farewell. It is very important not to get the two confused.

However, the question of ‘encouraging’ the well and not dying into an early death by suicide is still valid and no one should be doing that. It is a despicable suggestion. Sadly, the quality of modern medicine now means the line between life saved and lingered death is more blurred than ever before and it is going to get worse. The discussion needs to be had now and old people should be encouraged to enjoy their life and there should absolutely not be any pressure to end it.

What I think complicates the issue is for cases like my Mum, modern medicine gave her extra years where not all that long ago she would have been dead within a few months of her diagnosis. It’s the quality of modern medicine that gave her those extra tormented years and no one questioned the wisdom of giving it to her. Yet, towards the end of those extra years the question of when to let her die and whether it is right to help it along becomes relevant.

There is an insane paradox here; extend her life and then struggle with the question of when to let (or encourage) her to die. Why not just skip the whole process by letting nature take its ugly course and save myself a whole heap of pain. The state gets to not spend money too as a helpful side effect. It’s the advance of modern medicine that has created this situation and I don’t blame people for looking at the costs and asking if it is worth it. Often it isn’t. My concern is about not forcing suffering onto people by extending a life of pain and torture. Saving money is just a by-product of that, no one should ever put the money saving bit first.

Who makes the decision?

This is one of the key questions. If not me, who? I’m too emotionally connected to make a rational decision. Take the decision out of my hands and allow the state to choose for me? Are you serious? Can you not predict the response to THAT proposal?

End of life suffering is terrible and rational decisions do not come easy for those who are close to the affected.

I don’t have the answers to any of the questions and I don’t envy those who are working through the process. It is important to not let emotional connections dictate decisions and it is important to see the wider context of these important issues. I support assisted suicide but to suggest to anyone that they’d be doing us a favour by removing themselves from the population is a step in the wrong direction and I will be very critical of that action.

What I would be cautiously supportive of is a situation where medical care of a severe terminal illness is not given because it does not actually provide a benefit. This was the case with my mother and looking back I think we would have all been served better if we had not rushed into assuming the operation and medical treatment was the right thing to do. I cannot explain how hard that last sentence was to write, it’s the truth, but that doesn’t make it an easy truth.

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