A TERMINAL GIRL AND HER THOUGHTS ON DYING WITH DIGNITY

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Euthanasia, just saying the word or writing it in this case is often seen as controversial. It’s the debate as old as time, should we be allowed to choose whether to live or die? To be honest as a terminally ill woman in her 30’s my thoughts on this topic have changed regularly from supporting it to not supporting it, just as often as I dye my hair.

I watched a piece on TV on Sunday evening here in Australia  and I felt compelled to finally allow myself to post about it. I’ve felt it is simply too polarizing to write about or too confronting and I haven’t wanted to insult or upset people. I have had a blog about euthanasia sitting for months in my notes, every now and then I add or take opinions out, each time I hear it begging for me to copy, paste and post and each time as I select all and copy, I end up hitting close. Left unloved, unwanted and unpublished, just like in real life, euthanasia gets swept under the rug……again.

The euthanasia debate is like the legalizing of drugs debate or the legalizing of gay marriage debate, usually pulled out by some politician that’s trying to distract the public from something else that’s going on that they don’t want you to notice, so hey, let’s bring up the euthanasia debate again, that’ll distract them!

There will be a vote later on this month in relation to the cross-party private members bill, deciding whether the voluntary euthanasia bill will be debated in the South Australian Parliament. There’s something a little different about it this time, this time there has been a campaign with a real human being featured, putting a face to the pain and suffering. Kylie Monaghan, like myself has spent much of the last few years struggling to live, struggling to fight, struggling to beat Cancer. Sadly Kylie passed away on Saturday, so she will never get to see whether the campaign led to a debate that could potentially change the landscape of terminal illness and the right to die with dignity, the legacy she so greatly wanted to leave for people like me.

Like Kylie I understand why people want the right to choose whether to live or die and like Kylie I am or sadly in her case Kylie was, willing to fight right up until her last breath. I can’t ever imagine myself having the strength to say I’m ready to go, never mind voluntarily euthanizing myself, but until you’ve heard the words “there’s no more we can do”, until you’ve fought so hard through the deepest pits of pain, sickness and mental and physical exhaustion or watched a loved one do so, the truth is, you really don’t have the pre-requisites required to make the decision for thousands of dying human beings, but sadly that is the way of the world. Major life changing decisions are made by only a chosen few, whilst the rest of us just have to swallow their decision.

I realize that people fear, like legalizing marijuana for medicinal purposes, legalizing euthanasia, would open Pandora’s box, leaving it open to being abused or misappropriated, but with the right legislation and restrictions in place, you shouldn’t be able to abuse it.

According to Palliative Care Australia, 4% of palliative patients pain cannot be eased or relieved, not all pain can be alleviated, believe me I know. I am on a pain driver 24 hours a day and I still need added pain relief, morning and night in tablet form, as well as injecting pain relief throughout the day. Despite having enough drugs going through my system to make a Colombian Drug Lord jealous, I still have pain, all day, everyday. Granted it’s managed pain, but pain all the same, it’s still there and if I didn’t have this pain plan in place through my palliative doctor, I simply would not be able to function, breath, walk, talk, you name it and pain affects it.

I’ve been at that point, I’ve been at the point where I was in so much pain that the doctor approached my Mum and told her, that with the amount of morphine I was being given and it still not helping my pain, that I would simply die from palliative sedation, this is the current practice for palliative care in Australia. Now I may not remember everything about that night, as I was as high as a kite, but I do remember the unrelenting pain, losing use of my left leg and bladder, rolling around in a hospital bed moaning and I know firsthand that palliative sedation simply does not cut it. It can take days/weeks for a person to finally die this way and the entire time their pain is right there with them. I know, I was drugged to the point that a man with the girth of Santa Claus would be rendered dead and still the pain was there along with the “pain relief” induced nausea, so in between slowly dying, in pain that cannot be eased, you are also vomiting endlessly, to the point you have nothing left to bring up, you’re not eating and you’re probably not getting many fluids, other than the IV, if they’re still running the IV fluids.

Palliative sedation is basically giving a patient morphine over a period of time, until the person’s body simply shuts down and they die. As I said, doctors and nurses so often say about a patients death in this manner that they died peacefully and in very little to no pain. As you all know I love my doctors and nurses, I believe they have one of the hardest jobs in the world, but how do they know that person is not in pain? Just because they are so drugged and drowsy and are continuously dropping in and out of consciousness, does not mean the patient is not feeling pain. They may well not be, but I know from my own experience that although I was dropping in and out of consciousness, I was still in horrendous pain, it’s just that I could no longer communicate to the nurses and doctors that I was, so is this really a kind way to let a person die? I say no, I say it is a cruel and long drawn out process that involves, human beings being drugged to the point of numbness, they eventually stop eating and drinking and we sit and wait. As mentioned before, it could take days or weeks, everybody is different. Do we really want our loved ones to be suffering in such a way after what they’ve already endured throughout this bastard of a disease? Why would we want them to suffer anymore than they have to, when there is something we can do about it, Voluntary Euthanasia.

The truth is, restricted drugs like morphine or OxyContin are available to people in my position very easily and we could, if we wanted, take ourselves out anytime and I’m sure it’s happened time and time again, we would just like to be able to do it legally and without the stigma attached to it. A person gets to the point where they can no longer handle their child, parent, husband or friend having to wipe their ass for them, wash them, feed them and they don’t want to drag it out any longer. Have you ever watched a person you love slowly die? Have you ever witnessed a person in your life go from a lively and spirited person to a shadow of themselves that no longer has the desire or the will to live? It is not a pleasant sight for the patient or the loved one, it is literally hell on earth, we don’t watch a dog or a horse go through untreatable pain and just let nature take its course, we “put them to sleep”. So why is an animal afforded that option (ok it’s the owner that makes the decision, but you know what I mean) and human beings are not?

I don’t often and may never have, I can’t actually remember, bring up my religion. In my religion, something like euthanasia would be seen as a sin, just as abortion and same sex relationships would be. I truly believe that we should have the right to choose to die with dignity and in as minimal pain as possible. I followed a story of a woman who moved to another State in the USA, simply so she could be afforded the right to choose when to die. This lady was suffering from debilitating seizures from her brain cancer, she would literally bite her tongue off and with each seizure came more brain damage and this would impair her ability to communicate, imagine having these violent seizures, imagine watching your loved one going through that. Eventually the young woman decided on a date and she had her nearest and dearest around her bedside, as she took the Euthanasia meds over a short period of time. They went around each person in the bedroom and spoke of their favorite stories about her and she did the same in return. Her husband says, although painful and nobody wants to lose their wife, she went out on her own conditions. No major seizure took her out, no more pain, she died on her own terms.  Doesn’t that sound a lot nicer than a palliative sedation?

I hope this blog is taken the way it was intended, an opinion from a person who stares death in the eye everyday I wake up. As previously mentioned, I don’t believe I could actually do it myself, but I would never say never. I don’t know if my body or my mind for that matter, could cope with another bout of untreatable pain. Your body and your spirit can only take so much, I just don’t know if I could ever have the strength to legally voluntarily take my own life, but I believe the option should be out there. I do not like the idea, much like the medical marijuana situation, of self administrating drugs that have not been properly prescribed. I know that there are poor families out there that risk being arrested because they are buying marijuana oil for their epileptic 3 year old child, because it’s the only thing that reduces or even eradicates their child’s violent seizures. My problem with this is that it has not been properly prescribed, dosage could be wrong and we don’t actually know what this oil contains, yes they say it’s pure and bla bla bla, but until there are proper rules and guidelines in place, how do we know that we are not going to overdose our child or ourselves? Euthanasia is the same, it needs to be legalized and regulated so that we can ensure that people die in the correct manner and not get to the point where they decide to just overdose themselves on their own pain medication.

I know this topic is confronting and scary, but for people like me or people who have other terminally debilitating diseases, so is the thought of having imminent death upon us, so why not afford us the decency to choose how and when to die? As we’ve already lost so much.

CREDITS