End of life/advanced directives

sushipup1February 27, 2010

This is a deeply moving and thought-provoking story of a family going thru end-of-life decisions.

It's worth reading for all of us.

Here is a link that might be useful: health care directives

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Thank you, sushipup. That's an excellent article about why we all need to carefully consider not just the usual living will/durable healthcare power of attorney, but also the very real issues surrounding palliative care.

I know far too many people, my MIL included, who keep declaring they'll just 'drop dead'. They insist upon ignoring the evidence that to the contrary, Western medicine can now keep you alive for much longer than you might want. Everyone has to seriously consider, and then honestly discuss, how far they're willing to go in accepting end-of-life care.

These are difficult and individual decisions, and palliative care counseling can be very helpful in deciding what to do. Despite Palin's sensationalist 'death panel' accusations, these people have a real place in helping us laymen understand the true meaning of what the medical staff is actually saying about a dying patient.

    Bookmark   February 27, 2010 at 12:45PM
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That story really struck me, especially the part about the mother pulling out her feeding tube. Last November my 94 year old mother fell again and was sent to the ER. Of course, we immediatly went to see her and she seemed OK. However later that afternoon she was admitted with a pneumonia diagnosis. Later that evening her heart started racing uncontrollably and they had to give her additional mediction for that. When we went to see her the next morning, we discovered that she had puffy white "boxing glove" things on her hands. The nurse explained that she had torn out the IV with her medications, so they had to put the special gloves on her. Before I even went into her room, I saw her with the gloves up to her mouth and she was gnawing at them trying to remove them.

When she saw me, she started crying out my name, begging me to get those things off her. Then she started calling for my husband to do the same. I tried to calm her and comfort her but she was still horribly agitated. My mother suffered from Alzheimer's, so reasoning with her and explaining the need for the IVs was out of the question. I looked at her, so scared, so agitted, and realized that I could NOT do this to her. We had all the legalities and directives in place. We'd already had all the conversations. So I asked to talk to the doctor in charge.

He explained that in my mother's wekened state, it could take weeks for her pneumonia to clear up. In the meantime, she'd have the IVs. Then, even if she got better, she'd spend quite a while in a convelescent facility recuperating. All I could think of was that she would end up so weak that she'd permanently be in a wheelchair. And with little ability to interact with others (Every medical crisis had a negative effect on her Alzheimer's).

By the time the doctor was done talking to me and my husband, our daughter had arrived. She immediatly went into my mom's room, took the gloves off, and just held her hands so she wouldn't tear out her IVs. I told the doctor that I knew what my mom wanted, I knew she wasn't afraid of death. I said I couldn't sentence her to weeks or months of misery. I told him to remove the IVs and put her on palliative care. He understood and accepted my wishes. Both my husband and daughter agreed with my decision too.

So we all went back into her room and spent the entire afternoon with her. We sang songs, I read the 23rd Psalm to her (she was still able to recite much of it with me, especially the part about dwelling in the house of the Lord forever), we talked about Greek cooking, and my daughter's upcoming wedding. Eventually her fiance arrived and my mom was able to talk with him too. It was a wonderful time together with my mom. When we left her, we all prayed together. And my mother said a strong, "Amen!"

My biggest worry was that the anitbiotics she'd had for one day would somehow work just enough to prolong her suffering. The next morning we saw her again, but she was so weak and pretty much out of it. However, she was clutching the little teddy bear I got her the day before. Later that afternoon, I got the call that she had died. As strange as it may seem, the first words out of my mouth were, "Thank the Lord!" She wasn't suffering anymore, she hadn't died scared, agitated, or upset.

I've never second guessed my decision. I remember her crying my name. She was trusting me to deliver her from that frightening situation. I was her only child, so the resposibility was mine. She died a good death, spending her last hours of consciousness with her family.

    Bookmark   February 27, 2010 at 5:43PM
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You are a remarkable and courageous woman. Thank you for sharing your story with us. It is meaningful and heartwarming, and your mother was fortunate indeed to have a daughter whose love was as strong as her courage.

    Bookmark   February 28, 2010 at 1:51AM
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Thank you for posting that. Our society desperately needs to become more aware and prepared for the abilities, and also, in the end, the limitations of modern medicine. We really do a lot of "prolonging death". I think most people would be shocked at just how much.

40 years ago we did not do CPR on everyone -- and even today it is generally not successful except in certain circumstances like an acute heart attack. But hospitals became afraid of being sued, so now CPR is a given unless one has been designated "no CPR".

I also find that when doctors approach families, and ask if they want "everything" done, many/most don't understand the question or what their answer may mean.. Of course they want everything, isn't that why they are at the hospital? Doctors need to do a better job laying it all out, but again, they are often hesitant to be direct, afraid of offending, or fear to appear like they don't want to care for the patient.

Living wills are not enough--read them carefully--they apply to only a very limited situation.

I have several paragraphs written out and attached to my POA to try to make it clear what I would want in a situation like Bunny's or Shambo's. I have accepted that we must all die and do not see it as an evil that must be avoided at all costs. Having seen many instances of death, I am firmly convinced that we have a something in us that lives on; I believe that I have seen the moment of departure from the body more than once, and have had families relate stories that buttress that belief. I know that not everyone feels that way, it is just my belief.

On this forum I think we are more aware than many of the approach of death in our loved ones. I hope that, in the end, we all can have some peace that our decisions and care were the best we could offer, and that releasing our charges to death is not a failure.

    Bookmark   March 1, 2010 at 11:26AM
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Shambo, that is the way I felt when my husband died. I felt so guilty because of those feelings, I didn't tell anyone for a long time. Someone advised me I needed a Comfort Care document to prevent keeping him alive with meds. I got one for him and after he died I included that document in my papers. I also have a letter for my POA explaining what I want, a list of care homes in case I have a stroke or can't make my own decisions. I believe that document is called by other names in different states.

    Bookmark   March 4, 2010 at 7:42PM
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