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To: Lil Flower; Dr. Brian Kopp
Thank you for posting this information at #115 and #116. It is very helpful, and it explains a lot of what I went through in my own nightmare experience with hospice issues.

For whatever it's worth, Lil Flower, my mother is an additional example of a case where a hospice said they could not maintain a feeding tube. You say the hospice should immediately be reported. That's quite interesting, and I sure wish I'd known I could do that. I've been pro-life for well over two decades, but my focus has always been on the abortion issue, not end-of-life issues, and your post and that of Dr. Kopp have helped me a great deal in understanding things that I knew were wrong years ago but which I could not effectively argue against from a legal perspective.

I'm omitting some key details here for personal reasons, but am including what is legally and ethically relevant for making end-of-life decisions.

My mother died in her mid-sixties. Her history was that she had been a three-pack-per-day smoker for most of her life, resulting in COPD. She reported having completely stopped smoking a few years before her death, but years of heavy smoking had already done permanent damage. Some of that damage included severe low blood pressure causing weakness in her legs and arms that prevented her from walking, and eventually got so bad that she could no longer grip objects with her hands. The cause of this weakness was misdiagnosed and not recognized as being due to low blood pressure for an extended period, and that resulted in inadequate food and water since she couldn't eat by herself, leading to a declining health spiral with repeated emergency room visits due to fainting and other loss of consciousness until the COPD was finally properly diagnosed. Because she could not eat properly due to lack of ability to handle silverware at home, she suffered from extreme weight loss over a period of perhaps half a year, eventually went into a more serious coma, and was transported to an emergency room where she was expected to die. I was called from halfway across the country to participate in a family decision on withdrawing life support; when I discovered that meant withholding food and water, I absolutely refused, and fortunately she was in the intensive care unit of a Roman Catholic hospital where the staff understood my objections and called in additional staff members to try to deal with the situation.

During the argument over whether to remove her feeding tube, my mother continued to receive necessary nutrition and hydration to the point that she unexpectedly recovered, became fully conscious, and became very upset by what was happening. She ended up living several more weeks, but knew she'd probably die in the relatively near future, so rather than dying in a hospital, she wanted to go to a nursing home associated with her denomination, which was once evangelical but was quickly lapsing into liberalism.

The end result is she was placed into a hospice associated with the nursing home rather than the nursing home itself, lapsed into unconsciousness over the weekend when she couldn't eat or drink enough to sustain herself, and I discovered to my horror that she could not be put back on the feeding tube because of the institution's rules on the matter which, among other things, meant she couldn't be transferred to the part of the nursing home where feeding tubes could be restored.

I could do nothing under the circumstances because of documents my mother had signed much earlier in her living will which, once she woke up out of her coma, she clearly and repeatedly contradicted verbally in my presence and that of several witnesses. Once she lapsed back into unconsciousness, I could do nothing because of the living will.

I sure wish I had known at the time that I could report the hospice for what happened with her feeding tube. I have absolutely no doubt in my mind that my mother agreed to leave the hospital thinking she could be put back on a feeding tube if necessary, but once she lapsed into unconsciousness because she couldn't control her hands well enough to eat and drink by mouth, there was nothing more I could do.

Bottom line: people who say these things don't happen are simply wrong. Get your legal documents governing medical care written by a lawyer who is pro-life and understands the loopholes. If you can, choose a doctor, a hospital, and a nursing home that share your values. If you can't, make absolutely certain you have someone to advocate for you and make decisions on your behalf who understands what you want, and has the legal authority to follow your wishes.

The consequences of failure in situations like this could be fatal.

172 posted on 05/01/2012 7:26:54 PM PDT by darrellmaurina
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To: darrellmaurina
Bottom line: people who say these things don't happen are simply wrong

Or they have an agenda.

177 posted on 05/01/2012 8:32:56 PM PDT by Brian Kopp DPM
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