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Old 08-31-2008, 02:06 PM   #1
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Join Date: Aug 2008
Location: Layton, UT, USA
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ahungrysoul HB User
Hospice Care Abuse?

My sister has ALS. She was diagnosed about 2 and 1/2 years ago. From what I have read she may have anywhere from 6 months to 13 more years to live. The only part of her body that she can move is her left hand. I just finished reading "On Any Given Day" written by Joe Martin and he lived almost 12 years after being dianosed with ALS. At least six of those years, he was completely paralyzed.

My sister has been a hospice patient since around the beginning of this year, receiving care in her home. Normally a CNA comes in twice per day and a nurse comes to visit every couple of weeks.

A couple of months ago, my sister developed a bed sore. It has progressed to the point that it covers a large part of her backside and now there is staff infection in it. She is in so much pain that she is constantly drugged on methadone and morphine. She has no quality of life. A doctor had never been to visit her until the bed sore got so bad that she was in continuous pain.

My concern, and something I just learned yesterday, is that the hospice company is not providing the types of treatment required for the bed sore to heal. Apparently medicare does not pay for bed sore treatment. So any treatment comes directly out of the profits of this company. I think that they are just waiting for my sister to die so that they don't have to deal with this.

If she switched hospice companies, then she would have to pay for the treatment, which is not possible.

Ironically my sister has worked her whole life providing home health care as her profession. When the bed sore was just beginning to form, she asked about a wound vac and they told her it wasn't necessary. There is a wound clinic nearby, but they have only taken her there once.

I keep thinking, what if my sister has 10 more years to live? Can we really expect her to live like this? I think she wants to die to escape the pain from this huge, gaping sore. Where can I go or what can I do to find some help? Any suggestions are welcome.

 
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Old 09-25-2008, 06:12 PM   #2
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Join Date: Sep 2008
Location: Indianapolis, Indiana USA
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wildflower1573 HB User
Re: Hospice Care Abuse?

Your Hospice company has to supply wound care for your sister. They should provide the wound supplies, low air loss mattress, wheelchair gel pad if she uses a WC. Treating her pain is essential for your sister to not suffer. Almost every person would rather be slightly drowsy than have intractable pain.
Find a different Hospice company in your area, there are no consequences to changing at all. See if you have Odyssey in your area.

 
Old 09-26-2008, 08:28 AM   #3
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Join Date: Aug 2008
Location: Layton, UT, USA
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ahungrysoul HB User
Re: Hospice Care Abuse?

Thanks for your reply. My sister passed away yesterday morning from "complications due to ALS." I am devastated and my heart goes out to each and every person afflicted as well as their loved ones. No one should have to go through this kind of pain and suffering.

 
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