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by Sian Chapman via Stuff Nation
June 15, 2018
Sian Chapman and her father, pictured in 2001.
Have you ever watched someone die?
Not in the movies, not on Grey’s Anatomy or Criminal Minds, I mean really watched someone die.
Have you seen the pure and honest fear in someone's eyes when they tell you they have been diagnosed with a disease that’s so turbulent and devastating that their life hangs in the balance of some chemicals and the accuracy of a surgeon?
Have you watched as that person goes through the motions, the prepping and the scenarios for the coming war? For the surgeries, the medication, the treatments. They get poked and prodded and hurt, all to prepare for something that is supposed to make them better, even though nobody really believes it will work?
Have you held that person, cried as they sat there, staunch, reassuring you, telling you it’s going to be okay, but when you look into their eyes you know they are scared beyond their wits?
Tyler Olson/ 123RF
Sian Chapman says her father deserved to die with grace, dignity and without pain.
Have you watched them get wheeled away from you, into the unknown, into God only knows what?
Have you sat there, watching the clock? One hour turns to five, then it’s eight and the surgery should be done, then it’s nine, ten, still nothing. Sitting outside Intensive Care Unit crying, you find yourself praying for the first time in your life. Suddenly that 8 am surgery is twelve hours ago. Before you know it it’s 11 pm, nobody is telling you anything, you’re out of tears, out of vomit, out of fear.
Has your heart leapt into your mouth as the door to ICU opens, the nurse comes out and says they're back, they have had trouble stabilising them, but they're out, you can see them soon?
Have you ever walked into an ICU, and looked around the U shaped bend, not able to see the person you’re looking for? Only for your eyes to lock on the broken face of the person that means the most to you in this world.
Have you seen the machines, draining the wounds? The machines hooked up to their lungs, making them do their job. The ones that are keeping their heart going, monitoring the new blood flow to the new parts of their face that had to be rebuilt because of the devastating effect the disease had on the helpless tissue.
Have you seen the swelling, the antiseptic making them look green, not human, like a monster? Have you seen the pain etched on their face, underneath the swelling, the stitches, the blood, have you seen their eyes, flitting about under the eyelids.
If you close your eyes and there’s too much silence, can you still hear the beeping of the machines? Does the microwave sometimes bring memories from this time back? When you hear a smoker's cough, or someone with a really bad cold, does it sound like them trying to breathe through the hole in their throat? Through that tracheotomy they don’t realise is helping them?
Have you sat with someone who’s in so much pain, is so confused, that they hurt themselves without meaning too, confused, have you seen someone terrified by the machines that are the only reason they are alive?
Have you watched someone heal, slowly but surely, wounds washed, dressings changed, pain, but hopefulness as the wounds begin to fade?
Have you felt the relief, the giddy happiness when you find out they are coming home? Have you felt the false security that maybe, just maybe this nightmare might finally be over? They are home, they aren’t the same, but they are home. Things will start to get better.
Have you heard the phone ring, only for your heart to drop to your feet? They walk into the room, and say treatment starts soon. Then they are gone again, away for six weeks, having this treatment that’s supposed to make them better. You’re alone, you’re scared, and you’re angry.
Have you watched someone fade from the treatment for something? Have you watched it burn them, scare them, when they have to be alone strapped to a table from the neck up, they come out and they aren’t the same. Every day they don’t want to do it, they are terrified, but they do it anyway, and they do their damn hardest not to let their fear show.
Have you sat with them as they finally break down, they cry, and tell you they don’t know if they can do it anymore? And suddenly now it’s you reassuring them, telling them they are strong, that they can do it. That you believe in them.
Are you still with me?
Have you reached a year after the big surgery with someone? Things are okay, they aren’t the same, but they are okay. Then the phone rings again, and again you know something’s not right. They sit you down, and they say it’s back.
Have you felt that soul crushing desperation for it to not be real? Before you know it you’re praying again, wishing you’d wake up and that none of this was real, but it is real, it’s happening all over again.
Have you experienced round two of everything you’ve just read?
Do you know that it’s so much worse after round two? The healing, the meds, the hospitals, the beeping.
Have you been unable to accept that they are coming home? That once again, this ‘is all over’? They come home, slowly but surely things start to sort themselves out. But they aren’t the same. They look so different, they can’t eat normal food, they have no energy, they aren’t the person you once knew.
How about that? Do you know what that’s like? To see the strongest, most resilient person you have looked up to your whole life, become a shadow of their former self. Barely able to walk out to the letterbox, unable to come to any of the important events that you’re only participating in to make them proud.
Since round two ended, have you watched them slowly fade? You didn’t notice it at first, when you were living with them and saw them every day. But when you only see them once a week, you start to see it. The hearing loss, the confusion, the memory issues, the unexplained anger, the denial, the frustration. You notice them ever so slowly going downhill. So the next few years pass without much fuss, the same routine the same sick person.
Have you been there though, when that all changes for the third time?
When there are more tests, more scans, more poking, prodding, needles, bloods. Trying to figure out where this awful, tearing pain has come from. All the things that started this horrible journey. When the answer comes back, when the specialist says that it is indeed back, that there’s nothing we can do, and that they are referring their patient to palliative care.
Have you been there when the palliative care nurses come to talk? To say that yes, they are going to die, but that we are here to make things as easy and less scary as possible. As they discuss their options, they do not resuscitate conditions, the plans for medication, where they want to die. Have you sat there numb, tears silently sliding down your face as you listen to these people talk about it so openly and honestly, have you wanted to scream at these people who are only trying their very best to help?
Have you seen those final few months, as your person slips faster and faster away from you? They fade from a wholesome, funny and loving human, into a shell that's wracked by vicious, searing pain.
Have you seen those final weeks, where they try to manage the pain at a facility, only to be sent home to die, because their time is up? All that’s there is pain. No light, no laughter, no happiness, no love, no romance. It’s brutal, it’s horrible, and it’s vile. The maximum amount of pain meds are given, but they soon stop being effective. Meds are given to counteract the side effects of the pain relief, and more are given to stop those side effects, and so on and so forth. It’s a never-ending cycle of pain and suffering.
Have you sat there, watching the tremors rock their frail body? Have you watched what’s left of their wasted away muscles tense up? Have you heard their moans, their desperate cries, wishing you knew what they were trying to tell you? Have you seen their eyes the last time they flung open, terrified of what’s to come, of what death will be, but terrified to hold on, because of the pain? The dreadful, unimaginable pain of slowly dying.
My name is Sian Chapman, and this is my story. It was November 2012 when my dad was first diagnosed with cancer, I was 16. He fought a long and hard battle until his final fight on January 29, 2017, and he deserved to die with grace, dignity and most importantly he deserved to die pain-free. The end my father experienced was not one we would put upon our worst criminals or even our most sick animals.
Whether or not you have experienced any of what you have just read, you have no right to tell my dad, to tell me, or to tell anyone how or when we can choose to die. If it’s not a choice you want to have for your own life, fine, but you have absolutely no right on this earth to withhold that choice from any other human being.
I believe we as humans have the right to choose to die with dignity. When a long, slow and painful death is inevitable, we should have the right to be able to end our lives on our own terms, surrounded by our loved ones, content and safe within our minds that we will fade into whatever is next, without a soul-destroying battle against a body that has failed us.
© End-Of-Life Choice • PO Box 48 241, Silverstream, Upper Hutt 5142 • Email: firstname.lastname@example.org