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Thread: Does a dependent still have the right to decide?

  1. #11
    Quote Originally Posted by Denied2016 View Post
    I hadn't even thought of that. I know EMTs are under rules (in USA) so that they save lives no matter the situation. I believe theres a legal form where even 911/EMT assistance can be cancelled but it has to be signed and ready otherwise they do all they can.

    Leaving someone to die at the accident would be an almost impossible one to make legal I think. Maybe a solo car crash with zero collateral damage? Hard to say. Just hard to imagine EMTs agreeing, taking a seat, and just calling the coroner. Right circumstances though, to me, the right to be left alone should stand.
    yes most people don't think of that unfortunately. I believe in a developed country everyone should be in the system when it comes to medical care, so the ENT can take you to the hospital but once you get to the hospital and go through the system, if you made a DNR about specific conditions you don't want to live with it should pop up first thing for the hospital//doctors to see right away so they can let you die with your integrity and principles un hindered.

    I also think if someone explicitly begs to multiple witnesses to be left alone, they should leave the man the fuck alone! It's pretty easy to assess the gravity of such a situation, but the person in the broken basically dying body will know it right quick!

  2. #12
    You can verbalize - you can orally terminate all of your caregivers, in person.

    You can use the phone - you can orally terminate all of your caregivers by phone.

    You can type - you can email or snail-mail and terminate all of your caregivers.

    If you want to be left alone - you CAN be left alone.

    The ONLY reason one proclaims to want to be left the fuck alone but CHOOSES not to do any of the above is that they DO NOT want to be left alone. What they truly desire is to continue living what they call a miserable dehumanizing existence, or is at the very least, afraid not to.

    Everything else is just the excuses of a scared and weak minded person grasping desperately to whatever meaningless life he feels is left for him, and trying to get some validation for his endless excuses by typing those same excuses over and over again.

  3. #13
    Senior Member Oddity's Avatar
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    Quote Originally Posted by chick View Post
    You can verbalize - you can orally terminate all of your caregivers, in person.

    You can use the phone - you can orally terminate all of your caregivers by phone.

    You can type - you can email or snail-mail and terminate all of your caregivers.

    If you want to be left alone - you CAN be left alone.

    The ONLY reason one proclaims to want to be left the fuck alone but CHOOSES not to do any of the above is that they DO NOT want to be left alone. What they truly desire is to continue living what they call a miserable dehumanizing existence, or is at the very least, afraid not to.

    Everything else is just the excuses of a scared and weak minded person grasping desperately to whatever meaningless life he feels is left for him, and trying to get some validation for his endless excuses by typing those same excuses over and over again.
    Bullseye.
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

    "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

  4. #14
    Quote Originally Posted by JamesMcM View Post
    As someone that is fully dependent, do we still have the right to fire all caregiving support, even if it is likely very detrimental to our health? Do we have the right to just choose I'm done I want to be independent, I want to just be on my own, basically refuse any type of treatment/caregiving?

    Do we have the right to refuse all of it especially the undignified procedures? Or because we bumped our spinal cord inside his eyes do we no longer have that right, is it just assumed that along with our body we lost the capability of autonomy ; This is a serious question on a serious issue! l
    Try it. You'll get your answer. If you don't try, that means you don't want to really know the answer to your "serious question on a serious issue".

    There's no need to explain your decision to anyone. Try it. Fire everyone so you can get your wish and answer. It's very simple - do it today or give them 2 week notice. No explanation, other than you no longer need their employment.

    Do it.

  5. #15
    Gentlemen as usual you are insistent, on misunderstanding and misrepresenting what I am asking I'm not talking about about anything "real time", it may be on the back of my mind every now and then and one of the emergency cards in my deck which is not uncommon in high SCIs given we don't have the luxury lower injuries do in all aspects of life which happened to include the free and proper interaction/ handling with things like rope, guns, drugs etc.! but in NO WAY shape or form am I 100% desirable of refusing all treatment to reach death at this point in time or even when I started the thread not even close, and I have literally made no statement in this thread directly stating anything to logically come to the conclusion that chick and oddity have expressed ! Since you insist if you must know I still have some things I want to accomplish and put in place! But again "as usual" when I bring up certain topics your defensively trying to keep it focussed on my suppose it motives or lack there of to turn around and make me look like a crybaby cry wolf , even if to just convince yourself that that's the stance I'm taking; cause I doubt you're trying to convince a Nonexisting audience You're clearly trying to make a point about something because potentially what I say or have said in past indirectly hit a sore spot evidently your responses exhibit that! Which I am sorry, but to me is quite funny when I never make any kind of attack or insult directed at anyone other than myself, until/ unless they bring it upon themselves, and given the perspective or should I say bravado some of you tried to exhibit it's funny how much my awful writing and "Nothing more" then scared crybaby topics can have such an effect on such self acclaimed "strong" individuals... I digress, if you're going to bother responding read the entire message as to best avoid miscommunication/misunderstanding I would offer any of you the same respect.

    yet again you must not be reading what I'm saying and clearly not understanding what or why I'm asking what I'm asking! I'll say it again, and I really don't see how it's necessary but I will anyways: As it stand I have no desire to kick every caregiver out of my life at this point which we know what would lead to, I made that explicitly clear, and never once implied that that is what I'm trying to do, However if that was what I wanted to do I know exactly how I would do it, and the answer to the question I'm asking with this tread would be a irrelevant... you are exactly right if that is what I wanted to do right now at this moment that is exactly what I would do and depending how that went over (as in how much outside forces decided to intervene or lack there of) either way more than likely I wouldn't have an iPad to be typing! I am just trying to inquire about what implications someone could run into because there are many different variables that could take place, i'm not asking to aid my future plans I'm not even talking about my individual circumstances only, I'm talking about a wide range of circumstances here pertaining to a dependent individual requesting to deny all further caregiving guaranteeing death.

    Take for example what happened for me to spark this thread, I live with my mother she provides most my caregiving it is not working for a numberof reasons and a number of things are becoming intolerable for the both of us: Long story short argument ensues eventually I say "you can just go, you don't have to be here" for whatever reason that lead to a more intense argument till eventually again long story short I'm threatening to call the cops to take her out as this is my residence and I pay for everything, I did not care about paying severance or especially being left alone; I wanted to be alone i've analyzed this situation of being abandoned before two things can happen after some time if Decided I still have things to do or the pain is too much I'd have called 911 ( provided I can get to my phone), or if I was committed to dieing and I can handle The process I would slowly without a doubt die. Of course for any of that to happen she would have to leave first! Now she wouldn't, there was no chance of that happening even for 12 hours to give each other a break,either way by intentions were simply be alone at that point I just wanted peace and to stop the nerve pain , Spasticity not to mention mental anguish from getting worse! Things Took a turn When She claimed only One or both of two things would happen if I called the cops :
    1) she would explain the situation to the cop that I can't physically look after myself at all, they would then intervene and definitely not leave me alone.
    2) they would have me committed and put into a ward.

    I explained that I'm a grown man, just because I'm severely disabled did not mean I lose my rights, and even if that was the case ( which it wasn't) that I wanted to refuse all caregiving in order to die given the situation it is not irrational to wish for death blah blah blah, she explained that it's not that simple anymore basically analyzing the premise that now that I am severely disabled I am considered Vunerable a.k.a. incompetent and so on. CCAC was then contacted, she explained that if they think things are out-of-control they could have me committed, I explained that if she wasn't my caregiver and they were handling my care this would not be an issue this would be a violation etc. she disagreed and said that if I tried to refuse all caregiving well being fully involved with CCAC they would be obligated to have me committed. The spinal cord injury rehab actually stated that "Obligation" as well Wayback in the day when I didn't want them to change a clogged catheter ( Long story ),mind you I was in inpatient and that wasn't CCAC obviously

    Now I have read numerous stories about quadriplegics being on ventilator and/or feeding tubes against their will and asking to be taken off of it and being denied, even one member on here quite sometime ago,which really turns my stomach and infuriated me. So as she was explaining her analysis of what they would do, I remembered those situations and I started to wonder if she was actually right! So I came here, just simply to inquire although technically instigated/intrigued by minor real time events it's acompletely HYPOTHETICAL inquiry: trying to learn from other people's opinions, personal experience etc what the authorities can and cannot do, mostly trying to understand two hypothetical situations:
    1) someone is fully dependent living with family and being cared for, they decide they want to deny all treatment and let nature take it's course (whether they were told in person, got a phone call, or just never got a check is illrelevant they still live together they're going to know), family calls authorities.
    2) A fully dependent is using government organizations to get all of his caregiving, the severity of his condition is well documented and The organization and involved staff nurses, case manager etc. are responsible for him. Their informed he is refusing treatment they call the authorities

    100% hypothetical, no motive other than Curiosity really I just simple want to know what could happen what the authorities could be authorized to do, how that kind of situation would be handled really shows what kind of rights a person has and whether they are affected by their disability or not in societies view. Maybe in these situations the authorities can't do anything other then offer advice, offer "assistance" but could be told to leave and have to abide( this is what I am almost certain is the case, and in my eyes this is what should be the case) or maybe in these situations the authorities like my mother said could actually form eight you and have you committed to a ward! If that is the case then that is a worthwhile discussion in my eyes, that's not very fair like the paraplegic lawyer said that is just assuming that all disabled people should have to abide by The "lifestyle" that are all different, which is ridiculous and not right! And frankly I'm worried that that is the case, that they do have those capabilities not necessarily for myself I could easily figure out a way around thatl, for example by a pool get my seatbelt put back Play like everything is normal well the caregiver leaves and doesn't come back until night go for a swim ( but it still is a really fucked up situation and isn't right in terms of the whole perspective far bigger than just my own circumstance). And just to point out I am 100% certain that even if I was committed, after enough time I would be able to plead my case and either have assisted suicide or Get the initial assistance and agreement needed to deny any kind of treatment and let nature take it's course and rot to death. The potential problem I have is that not as James, but as an individual human with High complete quadriplegia left with a fully dependent lifestyle with no real-freedom and completely extreme, undignified procedures and yet I was committed for not wanting to live like that!

    p.s The bulk of what I wrote in response to oddity, in regards to people that are not able to communicate needed to be said because he so often states ( from a position of a paraplegic no less) that anyone can End their life it just takes conviction, which honestly probably 90-95% of the time is mostly accurate, but I know from personal first hand experience and secondhand experience with witnessing others there are plenty of cases when an individual is forcibly kept alive, despite being 100% aware yet in no way shape or form able to do anything about it, let alone refuse care/ treatment. I lose sleep at night thinking About those first three months, not in the sense that I'm like wow that was so traumatic! to be honest it was quite substantial, most people's worst nightmare doesn't even equate to what happened even the stories ( yet you can't possibly describe The situation accurately) stand people's hairs up and it was so simplistic I just couldn't move and couldn't speak, it's not like it was a fancy virus or disease, just a bad injury, but what really keeps me up at night is there's been more than a few people in that situation at the age of 20 but didn't recover at all and are probably kept alive for 10+ years like that, their youth would literally be a curse!

    Now if your guys interpretation were even slightly accurate you guys would be absolutely right if I was writing this thread to get "advice" or in most cases when it comes to whati call "Implementing suicide presenters" searching for drama/Sympathy/attention. well genuinely trying to pretend that I am highly motivated to deny all caregiving " read about to do it, I'll do it I'll do it", crying and whimpering well i type actually ignorantly believing I'm 100% capable of doing so yet I took the time to write on the internet beforehand that would be pathetic, weak, everything you guys said and more! Thankfully that's not the case, and it never was and I hope I made that ridiculously obvious .

    Honestly maybe I should've put in big bold letters 100% hypothetical question right away as not to "confuse" anyone lol, but I knew damn well The "James you can refuse care it's as simple as doing this and that, you're just too cowardly, weak, and scared, this is nothing more then the writing of the weak little boy who can't cope and is too frightened to do anything about it, it is, it is i sweaaaarrr" were coming haha whether they read the whole page or just a few sentences out of context, scanning to look for the chink in the argument despite no argument being presented ( other than the one they have in their own head ) or what parts sets them off the most it was going to happen,as I said what I've written in the past has indirectly hit people sore spot ( I just wanted to present a different side of the coin, a side surprising so many agree with so many understand,even want to hear yet so few can speak out about, but literally in this particular thread there's no such thing present it was a hypothetical inquiry pertaining to a relevant topic in the most severe cases of SCIs; nothing more) now a lot of responses I get are nothing more than defence mechanisms even when not remotely necessary. And even if I did emphasize hypothetical question , Or take the time to explain the motive right off the bat ( which I thought I did) it wouldn't of mattered, the kind of people that make these responses have A motive of their own when responding to what I write about certain things related to sci "life". So no matter how hard I try assumptions will be made and my " supposed" individual circumstance/ motives will be brought up even or should I say especially when it has nothing to do with what I ask about...

    p.p.s important note,as I said it would be pretty damn stupid and irrational , not to mention wasteful of other peoples time and resources to achieve death by denying all care which we know can take upwards of three months from real-time situations, in a country that has just legalized assisted suicide; just have to plead thy case! my goodness guys.
    Last edited by JamesMcM; 10-02-2016 at 12:33 AM.

  6. #16
    Quote Originally Posted by chick View Post
    You can verbalize - you can orally terminate all of your caregivers, in person.

    You can use the phone - you can orally terminate all of your caregivers by phone.

    You can type - you can email or snail-mail and terminate all of your caregivers.

    If you want to be left alone - you CAN be left alone.

    The ONLY reason one proclaims to want to be left the fuck alone but CHOOSES not to do any of the above is that they DO NOT want to be left alone. What they truly desire is to continue living what they call a miserable dehumanizing existence, or is at the very least, afraid not to.

    Everything else is just the excuses of a scared and weak minded person grasping desperately to whatever meaningless life he feels is left for him, and trying to get some validation for his endless excuses by typing those same excuses over and over again.
    Chick well written, very thorough "Weak minded" and all that... But just so know I just indepthly explained the reality of the situation that is this thread, and the motivation behind it's inception as well as sort of addressing yours and oddities, scrapers responses as a whole ( hard to do without going completely off subject because they weren't relevant to the conversation). This exact same thing has happened to other threads I've made that end up this way thanks to basically the same people. Take a gander through it above^^^ maybe you'll understand, it's quite long though. Or just simply cut out yours, oddity, and scrapers posts and only look at "everybody" else's me, Mrb, Denied , (not mine that are in response to one of you guys.) and you can very easily tell that the context of the conversations has little to do with me, my motivation, my individual Situation in any regards. It's about the entire picture, at least as large as one country. My God guys put your claws away, the only interpretation of your life that matters is your own who cares what I or anyone else says! I agree everyone should argue with a point they don't agree with if they have the time but there is no point in getting so defensive that your just on the lookout leading to complete and frankly embarrassing miscommunication!
    Last edited by JamesMcM; 10-02-2016 at 12:32 AM.

  7. #17
    Super Moderator Sue Pendleton's Avatar
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    The easiest way to do this in most western countries is to wait for your next UTI or other infection. You can maintain caregivers for daily custodial care and ADL care but reject any actually medical intervention such as seeing a doctor, taking antibiotics or even being admitted to a hospital. You'll need a DNR or aid filed with your doctors and any local 911 and your normal hospital in advance. All of those you can cancel verbally if you change your mind. But be aware that when you decide to reject treatment that most doctors will also cut off further anti-spasticity and pain meds unless you have terminal cancer. Some paid caregivers may leave due to a religious or other objection they have but as long as you are competent you can reject actual medical intervention.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #18
    Quote Originally Posted by Sue Pendleton View Post
    The easiest way to do this in most western countries is to wait for your next UTI or other infection. You can maintain caregivers for daily custodial care and ADL care but reject any actually medical intervention such as seeing a doctor, taking antibiotics or even being admitted to a hospital. You'll need a DNR or aid filed with your doctors and any local 911 and your normal hospital in advance. All of those you can cancel verbally if you change your mind. But be aware that when you decide to reject treatment that most doctors will also cut off further anti-spasticity and pain meds unless you have terminal cancer. Some paid caregivers may leave due to a religious or other objection they have but as long as you are competent you can reject actual medical intervention.
    Oh yes I understand that that would be the most logical approach to take. I merely asking a hypothetical question, as to whether this is society notion is everyone is expected to subscribe to The dependent lifestyle if that is what life offers them. To answer that question best, I created a hypothetical scenario slightly based on a personal experience if one was to tell his caregiver I no longer need your services I just want to be alone from now on and or said the same thing to a government organization like CCAC, and either of them call the authorities in response. Could a complete quadriplegic dependable individual be received a "formula 8". If they can I think that is absolutely preposterous and I would be curious as to how that situation would play out, personal interests/motives aside only for the sake of curiosity and principal, as well as sympathetic/passionate to the situation.


    Recently I've had some internal problems lypase at 900, potential pancreas problem,definite spleen issues as well and obviously extreme aabdominal pain that is making my spasms worse, and could be the culprit that is causing untreatableas well as undiagnosable frequent daily fits of dysreflexia. I got an abdominal CT at first a resident completely screwed up the analyzing of the scan, then over the next few days they found more and more abnormalities; at the same time as an inpatient ( after they moved me to internal medicine unit) the doctor said that the scans are not 100% conclusive at best 30% and my condition makes it extremely difficult and much more complicated basically concluded we have no ideawhat's going on other than a few obvious observations, I've been having to go back-and-forth to get different blood tests (One thing we are thinking is that my spasms are squeezing my abdomen so hard constantly they are doing internal damage, for one thing my spleen apparently is showing signs of trauma releasing cells that are actually creating small spleen like growths I can't remember the term, as long as it doesn't get out of hand should be harmful, disgusting thoand bothers me. but my blood work is always abnormal to very concerning). Spend a few days fasting and receiving liquids through IV etc. when she told me this, I thought of my past experiences The seven months in acute care (pneumonia, blood infection, numerous bedsores, collapsed lung, MRSA, multiple aspirations and Bronch, ventilator dependent as a C-5, inflammation swelling my entire body etc)over the years spasms that are untreatable and against common outcomes where they get weaker/less frequent over time mine have in fact steadily got worse in every wayover time, I thought of the osteoporosis that is spreading and untreatable, I thought of all the various different types of chronic infections (three life-threatening) I have had with no real way of preventing them happening again, chronic antibiotic use leading to antibiotic resistance and superbugs. Bladder/ kidney stones, and no real way to properly manage the bladder, tendon damage occurring in my shoulder despite the fact I do not transfer and I use an electric wheelchair and I'm only four years post most likely from using Cipro too much but again no conclusive diagnosis and no way to treat, the synrix on my spinal cord causing more nerve pain and spasticity again nothing conclusive no treatment other than extreme measures and only if it moves upwards not if it moves downwards completely destroying the spinal cord and any hope for future treatments with it, spinal atrophy, muscle atrophy, bladder shrinkage, drop foot, joint damage all untreatable literally rotting from head to toe nothing to do but excepted at best half ass options that do nothing even close to reverse the damage or treating. Then my very serious issue with autonomic dysreflexia not being able to figure it out, random unexplainable sweating in the modern medicine doesn't even really know the cause of, doesn't know the long-term implications of etc. After four years and having the shit end of the stick for almost every potential secondary complication and modern medicine offering nothing more than meds after meds, to extreme surgeries both of which are quite often of a little of fact, extremely dangerous, and riddled with their own Long list of side effects. So finally with this new most recent issue, and as I said after dealing with so much over four years none of which had any conclusive answers, and now this latest escapade gets the same vague interpretation unable to diagnose and unable to treat, sitting in the hospital for probably the hundredth time literally I looked The doctor dead in the eye, explained my past and my situation; expressed my very justified truthful reasoning that modern medicine is useless on basically every front for severe quadriplegia I simply asked "why do you keep people alive like this, if you can't do anything about the paralysis yet you can't even do anything about even one of the secondary complications" by the time I had finished A veteran internal medicine doctor was literally almost in tears, had to leave the room and never came back to look me in the face. Hours later after she composed herself she has the audacity to grab my mother while she was walking in the hallway to kindly pointed out that she had flagged my file, and said "I wasn't in a good state of mind" apparently my mom put her in her place, evidently she was too cowardly to say that to me. And my mom didn't tell me till days later as I was very ill and she knew How out raged I would be.

    When it comes to sci level and severity in terms of function are not the only variables. Every aspect of our bodies react individually, The many potential secondary complications are never the same in each injury some people are blessed like a C-5 I have known no spasticity, bladder so calm he has managed it with a condom catheter for over 20 years, barely knows what dysreflexia is etc. evidently others are lucky and they have moderate complications, others are horribly unlucky in these cases evidently you will see how truly useless modern medicine is not just in regards to treating the actual injury. Like for a unfortunate young man Who situation has been introduced to me by another quadriplegic (who is very lucky and realizes it both functionally as an Asia B and secondary complications wise). From what he told me this young man is trapped in the hospital because of dysreflexia alone, they cannot explain why it keeps happening and it is so severe that it actually causes him to break out into seizures he will likely suffered permanent damage ( it's believed his youth is his only saving grace at this point) and become more disabled and will most likely die (badly) eventually because of it. Modern medicine knows nothing, they should not be holding expectations unless they fully understand the condition and every possible variable/individual case of it,.

  9. #19
    Senior Member alan's Avatar
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    Quote Originally Posted by Sue Pendleton View Post
    The easiest way to do this in most western countries is to wait for your next UTI or other infection. You can maintain caregivers for daily custodial care and ADL care but reject any actually medical intervention such as seeing a doctor, taking antibiotics or even being admitted to a hospital. You'll need a DNR or aid filed with your doctors and any local 911 and your normal hospital in advance. All of those you can cancel verbally if you change your mind. But be aware that when you decide to reject treatment that most doctors will also cut off further anti-spasticity and pain meds unless you have terminal cancer. Some paid caregivers may leave due to a religious or other objection they have but as long as you are competent you can reject actual medical intervention.
    The caregivers you want to keep for daily custodial care may decide not to stay when they figure out what you are doing.
    Alan

    Proofread carefully to see if you any words out.

  10. #20
    Quote Originally Posted by alan View Post
    The caregivers you want to keep for daily custodial care may decide not to stay when they figure out what you are doing.
    Oh they most definitely won't unless you're in the hospital either way that's part of the extremely ugly process, and if they are family are you really gonna put them through that nobody thinks about these variables. But I'm speaking hypothetical here, I just wanted to know what could happen if a caregiver family member were to call the authorities on you because you were deciding to abandon treatment, again what hypothetically could happen what grounds they could take, I would've loved to hear personal experience from other dependent I do remember talking to someone on here that was put into a ward. And I was also curious that if a dependent called the police to have his live in caregiver removed and she explain to the police that there was no way that person could survive on their own, they want to get sick and die etc. would the police intervene where would they do their job and remove at that point the unwelcome guest and leave you to your own devices, show respect basically.

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