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The doctors have recommended my Dad move to hospice care.  He is 85, has dementia.  He broke his hip and was eventually able to stand and walk with a walker only briefly.  He got pneumonia, then c-diff, recovered from each but is now extremely weak.  He had a stomach tube put in place that I now wonder if that was a mistake.  We thought the pneumonia was from aspirating food and loss of ability to swallow was because he yanked out naso tubes three time and hurt himself.  We thought if he had a stomach tube until his throat healed, he would then be able to swallow again and could bounce back.  We were not told until recently by a new doctor that an inability  to swallow is part of dementia and in itself leads to the pneumonia, food or not.  I wish we had had better advice, but everyone is overly optimistic and didnt really tell us the info we needed to know.  So now he has a stomach tube and they need to keep feeding him for ethical reasons.  He has pneumonia again and a fever, and is not lucid for more than 30 seconds to a minute at a time with a lot of prodding.  

If he goes to hospice, will he still have the IV, stomach tube, antibiotics?  We are not sure if he is in pain because he cannot speak or even moan. Will they give him pain meds or morphine or not?  If they do keep feeding him, how long can he keep going like this?  

He is blood transfusion dependent, so can we stop the monthly blood transfusions in hospice?  I feel like we are artificially prolonging the end and his suffering.   We didnt mean to have this happen when we put in the stomach tube.  No one told us it could not be discontinued.

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Alison,
I am sorry about your father. I tried to answer your questions in groups below

He had a stomach tube put in place that I now wonder if that was a mistake.  

There is a lot of research now regarding Dementia. What we now know is that feeding tubes provide little benefit. Patients who received a tube did not live longer than those who did not. They did not gain weight. It did not prevent infections. The tube increases (rather than decreases) the risk of aspiration pneumonia.  The Alzheimerís association recommends no tube but instead a careful program of hand feeding patients. Dementia is a terminal disease. Part of the final stage is inability to swallow. A tube does not slow down the fact that his brain is deteriorating.

We thought the pneumonia was from aspirating food and loss of ability to swallow was because he yanked out naso tubes three time and hurt himself.  We thought if he had a stomach tube until his throat healed, he would then be able to swallow again and could bounce back.  We were not told until recently by a new doctor that an inability to swallow is part of dementia and in itself leads to the pneumonia, food or not.  

I am sorry you were not given the information that you needed to make a good decision. You were in a very difficult spot and had to at least try to remedy his downward decline. Be kind to yourself. What you did made good sense at the time.
So now he has a stomach tube and they need to keep feeding him for ethical reasons.  He has pneumonia again and a fever, and is not lucid for more than 30 seconds to a minute at a time with a lot of prodding.  He is blood transfusion dependent, so can we stop the monthly blood transfusions in hospice?  I feel like we are artificially prolonging the end and his suffering.   We didnít mean to have this happen when we put in the stomach tube.  No one told us it could not be discontinued.

It is absolutely incorrect that you need to keep feeding him for ethical reasons. Whoever is telling you this is very misinformed. Whoever is his medical power of attorney has the absolute right to remove the tube. Right now he is receiving a medical treatment that has been repeatedly shown to provide no benefit.  He is being deprived on receiving real food lovingly administered by a loved one. The tube is causing him to get pneumonia. Keeping the tube may actually accelerate his decline. Tubes are removed frequently. Sometimes patients even start to swallow again.  A hospital ethics committee can help you sort this out if he is in the hospital. An attorney can clarify the rights of the medical power of attorney.

If he goes to hospice, will he still have the IV, stomach tube, antibiotics?  We are not sure if he is in pain because he cannot speak or even moan. Will they give him pain meds or morphine or not?  If they do keep feeding him, how long can he keep going like this?  

Hospice should accept him with a feeding tube. They will monitor him closely for nonverbal signs of pain and they will treat his pain.  Regarding the IV and antibiotics. The question is do these treatments provide comfort to dying patients? Research shows that dehydrated patients die more comfortably than hydrated one. There is a theory that the body produces endorphins during dehydration that actually makes patients more comfortable.  Antibiotics are provided by hospice if they make the patient more comfortable. Keep asking the questions, will this make him more comfortable or not?

Your father sounds like he will die soon. A lot depends on his condition prior to getting the pneumonia. If he was on a steep downhill decline prior to pneumonia, he will likely die soon. If not, he could recover for a bit but continue to decline.

Now that it is clear that he is in the terminal phase of his condition, the essential question is: how can his final weeks be more comfortable? Hand feeding him whatever he loves to eat is more desirable than tube feeding.  IVís can cause patients to collect fluid in their lungs which causes shortness of breath and increased discomfort. Antibiotics in this fragile state cause fungal infections and C diff colitis which increases discomfort.  

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Betsy Murphy

Expertise

My expertise is in end of life care for adults. Identifying when someone is approaching the end of their life. Benefits and burdens of end of life treatments. Managing pain and other symptoms. Providing care for dying patients at home. Advocating for someone who is dying in a hospital or nursing home.

Experience

More than 28 years of experience in hospice care. Currently consulting with hospices to promote access for patients to receive hospice care earlier in the course of their illness. Betsy provides training for hospice marketing staff to effectively work with nursing facilities to help identify eligible patients. She writes Additional Development Request (ADR) letters to Medicare to help hospices get paid for their services and to avoid future claim denials.

Organizations
Hospice and Palliative Nurses Association

Publications
Articles: Clinical Reviews, Advance for Nurses, Nursing Spectrum, Washington Business Woman, www.Ezine.com;www.alz-nca.com.Books: Understanding Medical-Surgical Nursing (FA Davis and Company), Guide to Caregiving in the Final Months of Life (TM Brown publishers).

Education/Credentials
Bachelors of Science in Nursing, additionally trained as a Family Nurse Practitioner and certified as a hospice and palliative care nurse.

Awards and Honors
Outstanding Woman in Loudoun County (VA) by Loudoun County Commission on Women 1997 and 2002.

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