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Livingbyfaith
Livingbyfaith Member Posts: 55
edited November 2013 in Colorectal Cancer #1

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Comments

  • rls67
    rls67 Member Posts: 127
    I think the insurance co.

    I think the insurance co. have had death panels for years. How many times have people on this board have been denied treatments because they are to "expensive"? 

    That is a form of death panel. That has been going on alot longer than thus new health care. I myself am not 100% sure what this new health care will bring in the future. But I can tell you something good that has come out of it that will help my family and many more families. The health insurance I have at ny work, which I am allowed to keep, there is now a cap on the amount of out of pocket money I can be charged. I believe it is about 4200 hundred dollars, then I am covered 100%. This means I won't lose my home and everything I worked so hard for. I can tell you just this past 14 months, I have paid many, many thousands of dollars out of pocket. So much that I lost pretty much all my life savings on medical and hospital bills. 

    I myself will take the wait and see approach when it comes to "death panels". I don't know how many times I have heard so many scare tactics from politicaly motivated people. By the way, I am not a Obama supporter, nor was I a Bush supporter. I tend to think they are all crooks. I pretty much live by your name, I put my trust in GOD, not this corrupt govt.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Please Livingbyfaith

    I have read your experience and am very sorry for your loss.

    You are certainly free to have your opinion regarding DP's and I know many here have had their own difficulties with the medical profession and insurance companies.

    The politics of this issue is best addressed elsewhere.  This site is not for that.  It is to offer help and support to those who ask for it.

    I beleive changing your perspective to the positive as to what can be done to assure best care and treatment would be more benificial to the folks here.

    Assessment of a patient's overall medical condition has always been a factor in what and how much treatment a patient receives.  That is why so often we suggest that a second, third opinion be gotten when the original plan does not meet what the patient feels they want or need.

    Marie who loves kitties

     

  • YoVita
    YoVita Member Posts: 590 Member

    Please Livingbyfaith

    I have read your experience and am very sorry for your loss.

    You are certainly free to have your opinion regarding DP's and I know many here have had their own difficulties with the medical profession and insurance companies.

    The politics of this issue is best addressed elsewhere.  This site is not for that.  It is to offer help and support to those who ask for it.

    I beleive changing your perspective to the positive as to what can be done to assure best care and treatment would be more benificial to the folks here.

    Assessment of a patient's overall medical condition has always been a factor in what and how much treatment a patient receives.  That is why so often we suggest that a second, third opinion be gotten when the original plan does not meet what the patient feels they want or need.

    Marie who loves kitties

     

    Thank you Marie

    You've expressed my thoughts - but so much more gently.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    YoVita said:

    Thank you Marie

    You've expressed my thoughts - but so much more gently.

    I agree.

    I quit posting at the Colon Club site because there was too much political debate there, and it was all too often unfriendly.

    I am a very politically active person in my private life (my FB friends suffer for it), but here...I'd rather focus on supporting and being kind to each other.

    AA

  • sky123
    sky123 Member Posts: 15
    I agree, politics not appropriate here

    Hello all,

    I may become less active at CC myself because of their tolerance for political stuff, which almost always is of the scared reactionary variety. Seems fear makes for political posting more often than compassion.

     I just want an exchange of information and support.

    Thanks,

    Sky

  • devotion10
    devotion10 Member Posts: 623 Member
    With all due respect to the original poster ...

    this post is simply designed to incite political discord. It also violates the User Terms of the CSN site.  If I wanted to hear this type of discourse that first rumbled through the news a couple of years ago, I can turn on Fox News or listen to Rush Limbaugh.

    The board is always healthier and we do best by each other when we stick to the issues that unite us, not divide us ... supporting those who are recently diagnosed with colorectal cancer, are involved in treatment, are post-treatment, or those who care for or have lost someone from this disease.

    (For those of you who know me, you know I couldn't sit quietly on this one.)

  • karguy
    karguy Member Posts: 1,020 Member
    rls67 said:

    I think the insurance co.

    I think the insurance co. have had death panels for years. How many times have people on this board have been denied treatments because they are to "expensive"? 

    That is a form of death panel. That has been going on alot longer than thus new health care. I myself am not 100% sure what this new health care will bring in the future. But I can tell you something good that has come out of it that will help my family and many more families. The health insurance I have at ny work, which I am allowed to keep, there is now a cap on the amount of out of pocket money I can be charged. I believe it is about 4200 hundred dollars, then I am covered 100%. This means I won't lose my home and everything I worked so hard for. I can tell you just this past 14 months, I have paid many, many thousands of dollars out of pocket. So much that I lost pretty much all my life savings on medical and hospital bills. 

    I myself will take the wait and see approach when it comes to "death panels". I don't know how many times I have heard so many scare tactics from politicaly motivated people. By the way, I am not a Obama supporter, nor was I a Bush supporter. I tend to think they are all crooks. I pretty much live by your name, I put my trust in GOD, not this corrupt govt.

    I agree

    I agree with marie,this is not the place for politics,we have enough problems already.This is a support group for cancer patients.We are here to offer support,and advice.

  • Livingbyfaith
    Livingbyfaith Member Posts: 55

    With all due respect to the original poster ...

    this post is simply designed to incite political discord. It also violates the User Terms of the CSN site.  If I wanted to hear this type of discourse that first rumbled through the news a couple of years ago, I can turn on Fox News or listen to Rush Limbaugh.

    The board is always healthier and we do best by each other when we stick to the issues that unite us, not divide us ... supporting those who are recently diagnosed with colorectal cancer, are involved in treatment, are post-treatment, or those who care for or have lost someone from this disease.

    (For those of you who know me, you know I couldn't sit quietly on this one.)

    This was not meant to be a

    This was not meant to be a political comment but a warning to people and caregivers to be on guard.  My husband was denied food and water for over 3 days until I signed for him to go to hospice.  I have talked to several others with similar things happening.  There must be a cap on what is being spent per patient or new guidelines.  This has nothing to do with politics, hoping my husband's death might help someone else.  The lesson is get a second opinion quick when you are told nothing more can be done.  New things are developed daily that could help, if you go on hospice you will never know.  This site has been invaluable to me over the years, I am just praying I can help others prevent what I went thru and many others are starting to.  God bless.

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    Difficult

    This is a difficult and sensitive subject for which there may be more than one correct answer.  How do we prevent miscommunication and failed expectations?  

    1. For me it is a matter of being as informed as possible whether you are the patient or caregiver.  
    2. Spend time preparing instructions that clearly outline the wishes of the patient.  Make this a part of the medical record for all to see.
    3. Have the hard end of life discussion with the care team early. Don't wait until there is a sense of dread.

    Conflicting wishes of the family and the patient are not, in my opinion, totally avoidable. Yet, prior written communication can help here; especially when the patient no longer has a voice in the conversation.

    Peace,

    Art

  • geotina
    geotina Member Posts: 2,111 Member
    I also

    thought the content was inappropriate.  I saw it this morning and clicked off to another discussion.   If memory serves your husband signed a DNR.   If any type of nutrition was withheld, it may have been due to the language  of the DNR.  If it was in the language of the DNR, then that is what the hospital was legally bound to do while the patient is in their care. 

    In my opinion, this is a support site.  Suport of patients, caregivers and their families. Sharing of experiences with treatments, side effects, a place to vent if needed.   It is not a political forum. 

    The care my husband received during his last days was exemplary.   He and our entire family was treated with the upmost respect, care and comfort and for that I am eternally grateful to their entire staff.  While the decision was made, (believe me these are not easy decisions) to not do things to prolong life like ventilator, dialysis, and the like, absolutely nothing was withheld regarding IV fluids, medication for pain if he was indeed in any pain, some antibiotics and the like. 

    Losing a loved one is so very difficult.  It is human nature to try to blame someone for not doing this or that but the bottom line is sometimes the cancer wins and the body just cannot overcome it.  I saw George declining for a period of time and he was miserable.  When it was determined that "throwing everything at him" would not turn things around I decided it was time to let go and his doctors agreed.  Please note, this was a decision I made, not the doctors.  If I wanted everything thrown at him they could that is exactly what they were prepared to do.  George left this earth surrounded by people that cared so very much.  The beeping machines were turned down, the lights were softened, he was comfortable, in no pain, and treated with complete dignity. 

    Well, off my soapbox.  Love to you all.

    Tina

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    geotina said:

    I also

    thought the content was inappropriate.  I saw it this morning and clicked off to another discussion.   If memory serves your husband signed a DNR.   If any type of nutrition was withheld, it may have been due to the language  of the DNR.  If it was in the language of the DNR, then that is what the hospital was legally bound to do while the patient is in their care. 

    In my opinion, this is a support site.  Suport of patients, caregivers and their families. Sharing of experiences with treatments, side effects, a place to vent if needed.   It is not a political forum. 

    The care my husband received during his last days was exemplary.   He and our entire family was treated with the upmost respect, care and comfort and for that I am eternally grateful to their entire staff.  While the decision was made, (believe me these are not easy decisions) to not do things to prolong life like ventilator, dialysis, and the like, absolutely nothing was withheld regarding IV fluids, medication for pain if he was indeed in any pain, some antibiotics and the like. 

    Losing a loved one is so very difficult.  It is human nature to try to blame someone for not doing this or that but the bottom line is sometimes the cancer wins and the body just cannot overcome it.  I saw George declining for a period of time and he was miserable.  When it was determined that "throwing everything at him" would not turn things around I decided it was time to let go and his doctors agreed.  Please note, this was a decision I made, not the doctors.  If I wanted everything thrown at him they could that is exactly what they were prepared to do.  George left this earth surrounded by people that cared so very much.  The beeping machines were turned down, the lights were softened, he was comfortable, in no pain, and treated with complete dignity. 

    Well, off my soapbox.  Love to you all.

    Tina

     

    I agree with you, Tina.  I

    I agree with you, Tina.  I remember all your posts during the time of George's passing.  Steve's situation (at the end) was very similar to George's.   I, too, was highly impressed with the care Steve and our family received throughout his last few days.  Like you, I had several tough decisions to make on Steve's behalf and the staff was so supportive.  In fact, a bit off topic....  I donated his eyes for transplantation.  Just today I received a letter and certificate mfrom The Canadian Eye Bank.  They explained that three days after he died, his eyes were successfully transplanted into a blind person.  The operation was successful and now because of Steve, somebody's sight has been restored.  He was very generous and helpful and I know he would have been thrilled to know he helped someone in this way.  

     

    Chelsea

  • devotion10
    devotion10 Member Posts: 623 Member
    Chelsea71 said:

    I agree with you, Tina.  I

    I agree with you, Tina.  I remember all your posts during the time of George's passing.  Steve's situation (at the end) was very similar to George's.   I, too, was highly impressed with the care Steve and our family received throughout his last few days.  Like you, I had several tough decisions to make on Steve's behalf and the staff was so supportive.  In fact, a bit off topic....  I donated his eyes for transplantation.  Just today I received a letter and certificate mfrom The Canadian Eye Bank.  They explained that three days after he died, his eyes were successfully transplanted into a blind person.  The operation was successful and now because of Steve, somebody's sight has been restored.  He was very generous and helpful and I know he would have been thrilled to know he helped someone in this way.  

     

    Chelsea

    Chelsea -- What a wonderful memory for you and your family ...

    that you helped another in that way.  I bet many are not aware that cancer patients can do this. Best ~ Cynthia

  • geotina
    geotina Member Posts: 2,111 Member
    Chelsea71 said:

    I agree with you, Tina.  I

    I agree with you, Tina.  I remember all your posts during the time of George's passing.  Steve's situation (at the end) was very similar to George's.   I, too, was highly impressed with the care Steve and our family received throughout his last few days.  Like you, I had several tough decisions to make on Steve's behalf and the staff was so supportive.  In fact, a bit off topic....  I donated his eyes for transplantation.  Just today I received a letter and certificate mfrom The Canadian Eye Bank.  They explained that three days after he died, his eyes were successfully transplanted into a blind person.  The operation was successful and now because of Steve, somebody's sight has been restored.  He was very generous and helpful and I know he would have been thrilled to know he helped someone in this way.  

     

    Chelsea

    Chelsea:

    How very wonderful of you to think of others.  I, too, donated George's eyes after his death.  Unfortunately they were not able to be transplanted but instead were used as a research tool which I agreed to at the time of donation.

    Hugs - Tina

  • sky123
    sky123 Member Posts: 15
    geotina said:

    Chelsea:

    How very wonderful of you to think of others.  I, too, donated George's eyes after his death.  Unfortunately they were not able to be transplanted but instead were used as a research tool which I agreed to at the time of donation.

    Hugs - Tina

    Hmmm.. Faith and end of life

    This thread (land livingbyfaith's others) have reminded me of a study I saw not long ago. The study's purpose was to determine factors the led to better preparation for end of life, things such as having DNRs and MPOAs in place. They also looked at the degree of futile car given at end of life. What struck me as odd is that those who professed highest faith in God were the least prepared and demanded the most extensive end of life care. I remember pondering that it would seem that faith and the belief that a loved one was going to a better place should make them open to death in a more prepared fashion, but that's not the way it worked. Seems there may have been a faith that felt God would hear their prayers and so the reality of death was denied. This leads to confusion at end of life when so much is happening at once. I'm not saying this is what happened between livingbyfaith and her doctors, but it's a possibility. If so, that would make it very hard on all involved.

  • devotion10
    devotion10 Member Posts: 623 Member

    This was not meant to be a

    This was not meant to be a political comment but a warning to people and caregivers to be on guard.  My husband was denied food and water for over 3 days until I signed for him to go to hospice.  I have talked to several others with similar things happening.  There must be a cap on what is being spent per patient or new guidelines.  This has nothing to do with politics, hoping my husband's death might help someone else.  The lesson is get a second opinion quick when you are told nothing more can be done.  New things are developed daily that could help, if you go on hospice you will never know.  This site has been invaluable to me over the years, I am just praying I can help others prevent what I went thru and many others are starting to.  God bless.

    I am so sorry that you and your husband had this experience ...

    I have never heard of a situation where a hospital would deny food and water without a living will that indicates a patient's preference should their situation be terminal and their death imminent.

    It does sound as if something did go wrong in your situation if it happened the way you stated. But, I do not think that there are policies in any hospital anywhere that are being implemented to hasten the death of any individual. 

    I cared for my husband in home hospice prior to his death and I will tell you that there does come a point when one has to consider that the body can no longer process food and eventually even fluids.  

    This notion of not providing food and water to your loved one can run counter to all that your heart tells you to do ... yet, there does come a point where prolonging the life -- in some cases -- through forced feeding sometimes only extends their discomfort, suffering, and frustrate their desire to just let go and allow nature to take its course. This decision is never done without great and careful consideration.  I have never heard of any situation where the patient (if able) and the family was not involved in making this decision.

    As difficult as it might be to discuss, at the very end stages if life there is a side effect of starvation and dehydration in which one's metabolism changes and the resulting elevated level of ketones produces a mild sense of euphoria, so that hunger and even thirst are not the problem we might imagine.

    All of the individuals who helped me care for my husband at the end of his life had no hidden agenda to hasten his death, only provide him comfort and maintain his dignity.

    I hope that you are able to discover what occurred at the hospital where your husband received care before he entered hospice. Sincerely, I hope that you can unravel this and not just think what happened was some devious plot designed to rid the world of the terminally ill. 

    I am sorry for your loss. -- Cynthia

     

  • mags uk
    mags uk Member Posts: 8
    sky123 said:

    Hmmm.. Faith and end of life

    This thread (land livingbyfaith's others) have reminded me of a study I saw not long ago. The study's purpose was to determine factors the led to better preparation for end of life, things such as having DNRs and MPOAs in place. They also looked at the degree of futile car given at end of life. What struck me as odd is that those who professed highest faith in God were the least prepared and demanded the most extensive end of life care. I remember pondering that it would seem that faith and the belief that a loved one was going to a better place should make them open to death in a more prepared fashion, but that's not the way it worked. Seems there may have been a faith that felt God would hear their prayers and so the reality of death was denied. This leads to confusion at end of life when so much is happening at once. I'm not saying this is what happened between livingbyfaith and her doctors, but it's a possibility. If so, that would make it very hard on all involved.

    Heart felt sympathy

     Livingbyfaith,

    I am acutely aware that your lose is recent and I just want to reach out to you and send my love at what was a difficult time of saying goodbye. I remember several years ago on the colonclub a wonderful girl Starbucks died suddenly her father wrote an insightful triute about death and just how hard that can be. I can only imagine , I really can but my judgements are few and I hope your pain eases. No matter opinion its hard to watch someone you love die with faith or without watching someone in distress touches our humanity at every level. 

    We are bound by our humanity and we can make a difficult situation lessen by extending our humanity.

    Much love mags

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    rls67 said:

    I think the insurance co.

    I think the insurance co. have had death panels for years. How many times have people on this board have been denied treatments because they are to "expensive"? 

    That is a form of death panel. That has been going on alot longer than thus new health care. I myself am not 100% sure what this new health care will bring in the future. But I can tell you something good that has come out of it that will help my family and many more families. The health insurance I have at ny work, which I am allowed to keep, there is now a cap on the amount of out of pocket money I can be charged. I believe it is about 4200 hundred dollars, then I am covered 100%. This means I won't lose my home and everything I worked so hard for. I can tell you just this past 14 months, I have paid many, many thousands of dollars out of pocket. So much that I lost pretty much all my life savings on medical and hospital bills. 

    I myself will take the wait and see approach when it comes to "death panels". I don't know how many times I have heard so many scare tactics from politicaly motivated people. By the way, I am not a Obama supporter, nor was I a Bush supporter. I tend to think they are all crooks. I pretty much live by your name, I put my trust in GOD, not this corrupt govt.

    I do think there are valid underlying issues here that desparately need to be addressed.  LBF initial post needs to be reformulated.  Was this a link only or were their original hospital problems discussed?

    1. involuntary termination of nutrition

    2. systematic medical ignorance and error  

    3. out right conflict with misinformed or misbehaving staff

    4. assertion of rights and POA in a conflict

     

    Can someone PM me a summary of LBF original phrasing?

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    tanstaafl said:

    I do think there are valid underlying issues here that desparately need to be addressed.  LBF initial post needs to be reformulated.  Was this a link only or were their original hospital problems discussed?

    1. involuntary termination of nutrition

    2. systematic medical ignorance and error  

    3. out right conflict with misinformed or misbehaving staff

    4. assertion of rights and POA in a conflict

     

    Can someone PM me a summary of LBF original phrasing?

    On this thread

    There was no phrasing...there was just a link to a Fox video.

    Her actual postings were in another thread.