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Thread: Magazine (Cover Story)

  1. #11
    Distinguished Community Member Abby2006's Avatar
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    No Gabriella thats not it

    It's the January 11, 2012 issue of tme magazine/

    Abby
    Last edited by Abby2006; 06-10-2012 at 12:10 PM.
    Stand for something or you will fall for anything

  2. #12
    Distinguished Community Member tic chick's Avatar
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    hey everyone !

    this is a video interview with the person who wrote the article in time magazine. the article was called "how to die" and was written by joe klein, who is a writer for time magazine. the story in time magazine describes his experience during the last days of his mother's and father's lives. here are his own words about what he wanted to convey in his story, not what someone else with their own agenda wanted you to believe.

    http://video.msnbc.msn.com/dylan-rat...96240#47696240

    i don't post in this forum and for those of you who might not want to read this, i'm going to post my experiences with end of life decisions.

    i had read abby's post and listened to half of the video she posted. i was angry at what this person who writes for the internet based website, "natural news" as the "health ranger" was saying. he was referring to "death panels", pulling feeding tubes out of your parent's and letting your parent's die because you want to act in a "socially responsible" manner. however, i saw abby had deleted her post and i had chalked off this "health ranger" as being an opinionated commentator who had a national venue for his views to be read and heard. i had let my anger go and was going about my day yesterday until i got a phone call at 2:30pm.

    i have written in the alzheimer's forum here about my struggle with being the power of medical attorney for my mother, who has been in a nursing home with a diagnosis of severe alzheimer's dementia. she has been there for 4+ years. i have also written about my grief of losing her to dementia and my grief of the loss of hope i had of her ever being the mother i wanted her to be to me, for we had a reversed relationship, but i had already forgiven her for that a long time ago.

    because i am the power of attorney for my mother, everytime the phone rings and the caller id shows the name of the nursing home where my mother resides, my heart skips a beat. i let the phone ring one more time to give me one last moment of peace and to calm myself in case there is bad news. usually it is something minor; my mother was found on the floor although it doesn't appear that she had fallen, my mother has a urinary tract infection and they're starting her on antibiotics, my mother has a bruise that they just noticed. they call any time during the day or night, because they must tell me these things in accordance with the laws of michigan, where i live. because i am the power of attorney for my mother, i have the power of deciding whether they can give her any medication. i can specify what doctors i want or do not want her to see. i can discharge her from the hospital doing it "against medical advice" and i could take her out of the nursing home and put her anywhere else i wanted to.

    i am my mother's "life panel".

    so yesterday when the phone rang and i saw it was the nursing home, i let it ring one more time and i answered it. the nurse at the nh told me my mother was lethargic, was not eating or drinking and didn't want to get out of bed. she told me they were going to send her to the hospital, but that the ambulance wouldn't get there for another 45 minutes. i immediately asked my son to take me to the nursing home. i do not drive. i wanted to see my mother and judge for myself how bad she was, because i knew once i gave consent for my mom to go to the emergency room of the hospital, that i was giving consent for the the hospital to treat my mother and i knew they must treat her. i knew my mother was being treated for a urinary tract infection for the past week. i also knew she had a large polyp in her colon that was found last year during a colonoscopy for a low hemoglobin level. i do not know whether this polyp is cancerous, because they couldn't take a biopsy while doing the colonoscopy because the doctors neglected to take her off her blood thinners prior to knowing they were going to do the colonoscopy. i also knew my mother had congestive heart failure, heart arrhythmia and had 2 stents in her arteries. i made the decision not to have the polyp removed because it was very large, my mother would need a colostomy and her recovery would be slow. more importantly, she also could die during surgery because of her heart problems or die afterwards from the complications of surgery or recovery, from pneumonia, infection or both. i was not going to put her through chemotherapy or radiation therapy afterwards either, so there was no point in starting the process. my mother was in a state of decline at that time and she was forgetting who we all were (her family). at that time, i also signed a "do not resuscitate" order on my mom.

    i talked to my mother while she was still able to make decisions about her end of life wishes. my mother's mother had died from complications of surgery for colon cancer also and my mother specifically wanted to avoid that because she felt responsible for her mother's suffering and death because she and her siblings had agreed to the surgery. i knew my mother was having memory problems and i had a feeling it was dementia and i wanted to know her wishes before she could no longer tell them to anyone.

    so yesterday they did blood work and a few other tests and she had a bad urinary tract infection because the nh doctor put her on antibiotics that weren't killing the particular bacteria that was causing her infection, a drug the nursing home had found she was already resistant to. i could have chosen not to have her treated and let the infection spread to her bloodstream and cause her death. but i didn't, because her kidneys were still functioning well, her heart failure was under control and i knew my brother and sister would not want me to withhold treatment. my mom doesn't know who her family is, she is getting to be an aggressive/agitated patient, she can no longer put together a coherent sentence and she constantly has an unhappy look on her face because all her memories are so unhappy. however, she still sometimes responds to me with a smile when i walk into her room, she can still move herself around the nh in her wheelchair, she can still follow simple requests and even laugh once in a while and she still has an appetie and feeds herself. i let her be treated for the infection.

    my mother-in-law died last year in march. she was 93 and had been in assisted living and nursing home care for 14 years with alzheimer's dementia. she had no medical problems other than the dementia. she hadn't known her family (my husband and children), for the 8 years previous to her death. the christmas before she died, she was in the hospital for pneumonia. they cured her and she went back to the nursing home, but she never really regained her strength. she lost her appetite, started staying in bed and in march she developed pneumonia in both her lungs and a urinary tract infection. her primary care doctor said her condition was very serious. i talked to my husband and said, "i think it's time to let your mom go. she is in the process of dying. if they cure her of this and she goes back to the nh, she will just get worse because she is in decline and she will only suffer longer from now on." he talked to his mom's doctor and decided to put her in hospice.

    hospice means you recognize that your loved one has a diagnosis of a terminal disease, but now the suffering from the disease and the treatment of that disease has drastically lessened your loved one's quality of life and you are ready to stop any life prolonging treatments and let your loved one have a peaceful death. some terminally ill patients are able to decide that they want to go into hospice care.

    once a patient is in hospice, the hospital and family doctor are not in charge of the patient's treatment, the hospice team is. they are wonderful, dedicated, spiritual people who are usually nurse practitioners. they wrote orders for narcotics and drugs for break-through agitation for my mil. they monitored my mil and gave the orders to the hospital staff to follow. there were no more tests done on my mil; no xrays, no blood draws, nothing. a morphine drip iv was put in my mother's arm and that was the last thing that poked her. any symptoms that developed were dealt with drugs put into the iv. of course no food or water is given, because it causes more suffering (mucus build-up, coughing, difficulty breathing) during the dying process. we saw how peaceful and easy her breathing was during this time. the hospice called us when they knew her death was imminent and we saw her for the last time. she died 7 days after being put in hospice.

    i have written my story here because death is a personal and family matter, not a political one. i believe every person should think about end-of-life decisions, because if you do not make your wishes known, then someone will decide for you what is to be and that might not be what you want. you don't have to choose a family member as power of attorney for medical matters for your end of life decision's, it could be a friend, your doctor, a priest or anyone you trust and who will take the responsibility for your last wishes to be followed.

    all other things being the same as they are today...
    would i let my mom get a heart transplant? no.
    would i let my mom be treated for any kind of curable infection? yes.
    would i treat my mom for a curable infection if she was in a vegetative state? no.
    would i ever put her on a feeding tube? no.
    any other scenario? i make the best decision at the time, even to stop treatment.

    these are all scenarios and decisions that can be put in an end of life treatment plan. the more specific your choices are, the better your choices will be followed.

    the hardest part of being the life panel for a loved one are your emotional feelings about that person. of course, we never want our loved ones to die. i hope my mother dies naturally and peacefully.

    but if for some reason i need to make the decision that will result in my mother's death, i pray it is the best way possible to end her suffering; for i not only care about her quality of life, but also the quality of her death.

    thank you for sharing and caring,
    jeannie
    Last edited by tic chick; 06-11-2012 at 05:42 AM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  3. #13
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    Abby, You are making it harder for everyone to follow your post by deleting your reference to the articles after it is posted. Do you have another agenda other than discussing the Time magazine article?

    Jeannie, Thanks so much for posting the link to Joe Kein's interview which explains everything we all need to know about the current state of our health care system. We should all forget the political debate over health care issues and focus on the problems which exist now in the Medicare and Medicaid system which is our "fee for service" system. Both myself and my husband are sick and tired of the current system where the doctors who we see do not even communicate with each other. I have had to compile a notebook of our records to carry with us every time in order for the specialist (and we have a number) to even know what the other doctors are doing. Our PCP doc just refers us out to the specialists.

    I also appreciate you telling your experience with your Mother and MIL. I can empathize with you as my Mother and my MIL both died way back in the 80's from dementia related complications. That was before Hospice was available and I know how hard it is when decisions have to be made for parents who have not made their wishes known to family and we have to decide what is best for them.

    This is a wake-up call for all who have not already prepared whatever paperwork needs to be done to let our families know what our end-of-life wishes shoud be. That includes us. Recently, I had to get a Power of Attorney in order to discuss tax matters with the IRS as my husband is going thru a difficult time. The next step is to get all the medical papers done. Thank you very much.

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  4. #14
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    This was a very interesting video. Thanks for posting it. It is definitely something that we all need to think about and make our own plans as best we can.

    Jeannie, thanks for your posting about your own experiences with your Mother and your MIL. It would be a very emotionally and mentally hard thing to go through. Thankfully, your Mother has someone like you to make these decisions.

    I still do not understand all about the alternative way to "fee for service" treatment or how to go about getting it. I would think it would also depend on what area a person lives in as to whether or not it is available.
    Virginia

  5. #15
    Distinguished Community Member Abby2006's Avatar
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    Abby, You are making it harder for everyone to follow your post by deleting your reference to the articles after it is posted. Do you have another agenda other than discussing the Time magazine article?
    I explained the reason for the first delete and the second one was done as I realized I was doing what I said I wuld not do and that was upset Sally or anyone else.

    So no hidden agenda just continuing to bring up something that only I seem to have a problem with.

    Abby
    Stand for something or you will fall for anything

  6. #16
    Distinguished Community Member renee's Avatar
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    Jeanie-
    Been there, done that-
    Hospice that is.

    I think a shared experience with less than four unsynchronized siblings
    would have been easier.
    Thank the big Kahuna, mom was present and had a wicked sense
    humor enhanced by narcotics.

    It was so hard..

    Should I ever end up the patient in Hospice, if I demand ice cream, I want it.
    Mom wanted some chocolate ice cream.
    She got it despite NP instructions.
    Nurse Ratchitt.
    Denial would be counter the promise of a pleasant exit.

    Always something
    Last edited by renee; 06-13-2012 at 09:58 PM.

  7. #17
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    Abby, Have you read the Time magazine article? Sorry, I don't know what you have a problem with if as you say you have not seen the magazine article yet! It is a bit confusing to determine exactly what you are referring to.....Is it the end of life decisions, hospice, medicare/medicaid or something else?

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  8. #18
    Distinguished Community Member Abby2006's Avatar
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    Gabriella

    I am done talking about it. its upsetting to me okay and I am done trying to find someone here that thinks playing God is wrong,
    Death is His enemy and its not up to us to be pulling plugs on anyone much less be taking a cash reward for doing it (in article I deleted)

    So I am done trying.

    Abby
    Stand for something or you will fall for anything

  9. #19
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Abby2006 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I am done talking about it. its upsetting to me okay and I am done trying to find someone here that thinks playing God is wrong,
    Death is His enemy and its not up to us to be pulling plugs on anyone much less be taking a cash reward for doing it (in article I deleted)

    So I am done trying.

    Abby
    I understand you're done talking about it, Abby, but you're leaving the impression that the article indicates that people are getting cash rewards for "pulling the plug" on the terminally ill.

    I finally found the Time magazine article, and it looks as if this might be the passage that has troubled you:

    ...I was extremely fortunate to transfer my parents, at the end, from regular fee-for-service Medicare to a private nursing home that used the Geisinger health care system, in which--as with the Mayo Clinic and others--doctors are paid salaries and outcomes-based performance bonuses rather than by the services they perform.

    The article makes it clear that the "bonuses" are awarded based on the medical professional's ability to avoid unnecessary procedures and provide the best outcome for the patient.

    I hope this doesn't upset anyone. I wanted to clear up what the article actually does say.
    Last edited by agate; 06-15-2012 at 08:08 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  10. #20
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    Agate, Which magazine article are you quoting in your comments? It would clear the air if Abby would come back and comment on which article she is referring to as she said she did not read the Time magazine article so she must be basing her comments on the first article from the Natural News magazine which she deleted before most of us even had a chance to read it.

    That article is a second hand interpretation of the Time magazine article. Is anyone else as confused by all this deleting and commenting as I am?

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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