Expert: Paula Damgaard - 1/24/2008

Question
QUESTION: Dear Paula,
I'd like to ask a question regarding hospice care for end-stage Alzheimer's.  My Mom was diagnosed in 1999 and she has reached the point where her doctor has put her on hospice.  She has an advanced directive, so the decision-making is fairly easy.  She stated she did not want life sustaining treatment, so we have refused tube feeding after she repeatedly pulled the tubes out (even after being restrained).  Enough said, she is in the final stages and is not eating (maybe a small teaspoon of puree three times a day and maybe a few sips of thickened water throughout the day (aspirating each time she drinks).  Her doctor has told us she will probably pass away in 3 to 6 weeks.  I am a little perplexed about an issue though.  She has developed some UTI's and hospice is trying antibiotics (in liquid form), she really won't drink them, but they are trying anyway.  She is still in pain.  They have her on morphine (liquid) and seroquel (to try and control the agitation).  Watching her refuse food is painful enough, but to see her still in pain is also difficult.  Is this what the end is like?  I thought it would be peaceful, and instead she is moaning, grabbing her bed clothes and sheets, and she is hallucinating.  Is there something that I am missing that perhaps hospice isn't applying correctly with their comfort care?  Thank you.

ANSWER: Ann, before she was demented did she ever receive Morphine?  Sounds like she might be allergic to it maybe or the antibiotic.  

75% of elderly women have a constant UTI and don't even realize it so I am finding it hard to believe that that is the cause of her pain.  The demented do get more agitated from it so that could be the cause of her pulling at the sheets, but I am curious if she is allergic to the morphine. I would ask them if they could try something else for the pain just to see.  Or it could be the antibiotic she is allergic to.  It can't hurt to ask.  

Hope this helps. Paula

---------- FOLLOW-UP ----------

QUESTION: Thanks, Paula.  The hospice care is telling me that the only pain med they have is the morphine, since it can be applied to her gums since she can't eat or drink.  It is a UTI because she is telling me -- I've seen it before, she grabs her crotch, groans with the waves of pain, and she says "she has to pee."  It sounds simple, but she still retains what is happening to her (with this regard and others I'm convinced).  I was reading that antibiotics can prolong life, but to see her with the obvious signs, I think it's better to relieve the symptoms.  I haven't thought about the allergic reaction to morphine.  She has never been on morphine that I'm aware of.  She is allergic to vicodin.  I know she's not allergic to the antibiotic.  I'll see if hospice is familiar with the reactions or not.  But, could you tell me if antibiotics are worse or better for her at the end-stage?  She is 83 years old.  I just don't want to see her in any pain and would really like her as comfortable as possible.  I'm grateful that throughout this disease she was able to know who I was and that I'm there.  Thank you for helping me with this.

Answer
Antibiotics can prolong her life, because they are bringing her back to a "healthy" state which translates to being able to live.  Since she is being given the antibiotics orally and you wonder whether or not she is even getting any of it since she is hardly swallowing,so you really aren't treating the infection anyway, and in fact just opening the door for her to get an aspirational pneumonia.  

If you really think the UTI is causing her that much pain, then you probably need to start an IV and that would possibly mean you would have to take her off Hospice.  Sorry there are no simple answers to these end of life issues.  

I hope the morphine is the problem.  There are medicines that can be delivered IV for pain as well that aren't morphine and I know the Hospice can deliver those by IV, at least where I live they can.  It can't hurt to ask them.  Paula