I pasted a link (above) of an article about a 32-year old man who was brought out of sedation, told he was going to be on a ventilator the rest of life (they could not possibly know this), and that he would only ever be able to sit up and never hold his baby. They "diagnosed" him in this critical stage of his injury as a C3, C4, C5. In other articles about this, I read where he has an 18 month old baby. This man was grossly misinformed, in my opinion. My husband is a C2, Asia A, Complete injury. He has an annual exam at the La Jolla SCI VA hospital every year where he is diagnosed every year at that very same level. He weaned off the ventilator at Craig Hospital the summer of 2008. It took nearly 4 months, but he did it. I have met many C3 complete level's of injured people who do not breath with aid of a ventilator. The spine is a funny thing . . . one person's C3 is not always another person's C3. I have devoted the past 5 years of my life in research; learning all there is to know about SCI . . . which is why I have co-founded the foundation. I have met all walks of life with SCI and I am just so saddened this man's life was taken away because he was awoken scared, in pain and uniformed about his condition. I'm not trying to lesson the impact of SCI in a person's life as I live it with my husband on a daily basis . . . but, I will never believe it is worth choosing death over. I asked my husband Andrew what he thought of this and he understood where the man was coming from with being on the vent and the struggle for air and the feeling of not being able to move and being sedated, in that critical stage of the injury; however, it is Andrew's belief that no one could really make a good decision in that kind of condition. This man will miss so much in his life . . . it didn't need to happen this way.
I pasted a link (above) of an article about a 32-year old man who was brought out of sedation, told he was going to be on a ventilator the rest of life (they could not possibly know this), and that he would only ever be able to sit up and never hold his baby. They "diagnosed" him in this critical stage of his injury as a C3, C4, C5. In other articles about this, I read where he has an 18 month old baby. This man was grossly misinformed, in my opinion. My husband is a C2, Asia A, Complete injury. He has an annual exam at the La Jolla SCI VA hospital every year where he is diagnosed every year at that very same level. He weaned off the ventilator at Craig Hospital the summer of 2008. It took nearly 4 months, but he did it. I have met many C3 complete level's of injured people who do not breath with aid of a ventilator. The spine is a funny thing . . . one person's C3 is not always another person's C3. I have devoted the past 5 years of my life in research; learning all there is to know about SCI . . . which is why I have co-founded the foundation. I have met all walks of life with SCI and I am just so saddened this man's life was taken away because he was awoken scared, in pain and uniformed about his condition. I'm not trying to lesson the impact of SCI in a person's life as I live it with my husband on a daily basis . . . but, I will never believe it is worth choosing death over. I asked my husband Andrew what he thought of this and he understood where the man was coming from with being on the vent and the struggle for air and the feeling of not being able to move and being sedated, in that critical stage of the injury; however, it is Andrew's belief that no one could really make a good decision in that kind of condition. This man will miss so much in his life . . . it didn't need to happen this way.
as long as a person is alive, I personally believe it should be cherished and it is a gift ....but I guess we have "ways" of speeding up answers based on the information we provide to the patient. This part is so wrong.
I think that this is very sad. I think its sad that the guy was told what he would never be able to do. Where there is life, there is hope........ As you say d2mfoundation one person's injury level varies to another of the same level.
Who knows what function could have returned....he will never have the option to enjoy his family because he believed he would not be able to enjoy them. I think that a decision as big as this cant be made whilst someone is presented with the worst case scenario. I doubt he felt hopeful in any way at all.
Post by d2mfoundation on Nov 12, 2013 15:03:43 GMT -8
I feel, from our experience there is very little hope in the beginning of SCI. It is so scary and there are so many uncertainties and unanswered questions . . . that's the nature of the condition. With that said; however . . . this is the case for many conditions and diseases, but they don't just say "pull the plug" on cancer and heart disease and those who suffer from strokes or brain tumors . . . they go to great lengths to treat those things, right? I'm appalled at the medical staff in this case. They do not know at this stage in the game what this man's outcome may have been. There is no possible way they could have even known if he was a complete or incomplete injury. I have researched this and crushed or not crushed (spine). . . there can STILL be some connections in there. This VERY thing is a perfect example as to one of the goals my foundation is undertaking. To help inform those first responding hospitals and trauma centers about SCI. I have my own "horror" story of Andrew's ICU experience and I've heard countless stories of others' experiences, and it can all be chalked up to one thing . . . lack of SCI knowledge within those first responding hospitals. SCI is so highly under-represented, and I would like to play a small role in changing some of this for future injured people by helping to inform medical personnel and families who are in decision-making roles for those newly injured. If I had listened to the countless ICU doctors and medical staff about what to do with my husband . . . there is not a shred of doubt in my mind that Andrew would not be with us today. This story has really been tugging at my heart.
I think theres hope that cant be seen at first. It is definitely the role of staff to show some hope and he was in early recovery stages, right?
No Angel, he wasn't in recovery yet at all, he was still in spinal shock and barely at that. Only injured for a day or so at the point he decided to have his ventilator turned off. In my opinion the medical staff should have never told them he would be on a vent the rest of his life. They did not know this. I highly doubt if he was a C3 C4 C5 level injury he would have. I'm sure he was very groggy from being taken out of sedation, he was then told his fate, insufficiently being given 700 to 800 volumes of air (which basically feels like he's being suffocated), and then asked if he would like to die. I think anyone would probably choose to die at that point. It was all so wrong. Andrew remembers some of this during the ICU and given the chance to die at that point he may have just said . . . yes, this is all just too much. He, of course now knows that would have been the wrong decision . . . which is what makes that story such a tragedy to me.
Post by kilg0retr0ut on Nov 12, 2013 15:51:43 GMT -8
Welcome d2mfoundation, To answer your question, I think in this instance it was wrong, although I wasn't there to know what transpired exactly. I believe in assisted sucicide, but not in a critical moment like that.
I feel, from our experience there is very little hope in the beginning of SCI. It is so scary and there are so many uncertainties and unanswered questions . . . that's the nature of the condition. With that said; however . . . this is the case for many conditions and diseases, but they don't just say "pull the plug" on cancer and heart disease and those who suffer from strokes or brain tumors . . . they go to great lengths to treat those things, right? I'm appalled at the medical staff in this case. They do not know at this stage in the game what this man's outcome may have been. There is no possible way they could have even known if he was a complete or incomplete injury. I have researched this and crushed or not crushed (spine). . . there can STILL be some connections in there. This VERY thing is a perfect example as to one of the goals my foundation is undertaking. To help inform those first responding hospitals and trauma centers about SCI. I have my own "horror" story of Andrew's ICU experience and I've heard countless stories of others' experiences, and it can all be chalked up to one thing . . . lack of SCI knowledge within those first responding hospitals. SCI is so highly under-represented, and I would like to play a small role in changing some of this for future injured people by helping to inform medical personnel and families who are in decision-making roles for those newly injured. If I had listened to the countless ICU doctors and medical staff about what to do with my husband . . . there is not a shred of doubt in my mind that Andrew would not be with us today. This story has really been tugging at my heart.
you are so right ..... the medical profession, while saving lives is their job, do in fact have limitations and it goes to show you they too are prone to error
Post by deanertheweiner on Nov 12, 2013 16:50:26 GMT -8
I went through a very similar thing. Doctors told my family I had no hope, my brain and spinal cord separated at the brain stem, I had a severe brain injury, I was in a coma/ on life support and may never wake up. They gave my dad the option to take me off of life support.
The problem is the hospital will always give the worst case scenario when discribing your current situation after severe trauma which doesn't help the person deciding to pull the plug or not. They don't want to give false hope and you never get better. I can see where they are coming from because they definetly see cases where the person never gets better. It also costs the hospital a fortune everyday that person is kept alive and they unfortunately want to keep costs down so they give you no hope.
Do I agree with these practices? No. When the hospital describes the persons current situation, they can explain it's too early to tell what's going to happen. Only in time will they be able to tell how much potential the person will have to recover. I definetly don't agree with penny pinching either. If it was Oboma's family in that situation they would keep them alive for months or years...
I went through a very similar thing. Doctors told my family I had no hope, my brain and spinal cord separated at the brain stem, I had a severe brain injury, I was in a coma/ on life support and may never wake up. They gave my dad the option to take me off of life support.
The problem is the hospital will always give the worst case scenario when discribing your current situation after severe trauma which doesn't help the person deciding to pull the plug or not. They don't want to give false hope and you never get better. I can see where they are coming from because they definetly see cases where the person never gets better. It also costs the hospital a fortune everyday that person is kept alive and they unfortunately want to keep costs down so they give you no hope.
Do I agree with these practices? No. When the hospital describes the persons current situation, they can explain it's too early to tell what's going to happen. Only in time will they be able to tell how much potential the person will have to recover. I definetly don't agree with penny pinching either. If it was Oboma's family in that situation they would keep them alive for months or years...
I went through a very similar thing. Doctors told my family I had no hope, my brain and spinal cord separated at the brain stem, I had a severe brain injury, I was in a coma/ on life support and may never wake up. They gave my dad the option to take me off of life support.
The problem is the hospital will always give the worst case scenario when discribing your current situation after severe trauma which doesn't help the person deciding to pull the plug or not. They don't want to give false hope and you never get better. I can see where they are coming from because they definetly see cases where the person never gets better. It also costs the hospital a fortune everyday that person is kept alive and they unfortunately want to keep costs down so they give you no hope.
Do I agree with these practices? No. When the hospital describes the persons current situation, they can explain it's too early to tell what's going to happen. Only in time will they be able to tell how much potential the person will have to recover. I definetly don't agree with penny pinching either. If it was Oboma's family in that situation they would keep them alive for months or years...
Excellent post d2mfoundation, I saw the article a few days ago but haven't read up on it until now. I agree with what you're saying mainly because I've experienced similar situations myself and have heard from other people like deanertheweiner. Doctors always tell you the worse case scenario and never slip in hope. This man was extremely early in his injury and like you've said, he's definitely been misinformed. His body was most likely still in spinal shock which prevents you from recovering. When I was 1 month into my injury in the intensive care unit I could only move my right arm, just barely! Now I can move both arms quite well for someone with my level of injury. I was also initially classed ASIA A which changed to ASIA B three months down the road!
I think he would have had enough recovery say in a years time to even think about ending his life. He was told things that were uncertain which really affected his decision making. It's a very unfortunate situation for himself and his family. If he was able to talk to others with spinal cord injuries and hear about how much they've recovered despite what the doctors said, I think the final decision would have surely been different.
lonewolf it's a business in countries with no universal health care like the USA, but in places like Canada it's a service that is made to serve for the well being of its citizens.
This topic gets me stirred up inside because it happened to DJ and I and probably many others on this forum
Post by d2mfoundation on Nov 13, 2013 10:47:21 GMT -8
I'm so interested to read everyone's thoughts on this as it directly relates to my work. I can remember when we finally (after many weeks in and out of different facilities with Andrew) made it to Craig Hospital. I actually found myself so angry . . . wondering why these other facilities did not know [medically] what Craig knew. They were not providing enough volumes of air for Andrew to be comfortable breathing, they did not know what a bowel program was, they did not pad him correctly in his bed, they told me he would never sit up-right again. I now realize these a basic care functions to caring for someone with SCI, but the 4 facilities Andrew was in prior to Craig Hospital knew nothing of these things. It still amazes me as to why this is. I am not saying every hospital is lacking in this area . . . but, it seems many do.