Question about Hospice and D/C of meds

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I am a student nurse on rotation at an extended care facility. I was assigned a patient with Huntington's Disease. He is in he last stage of the disease, but alert and oriented although he can only respond in one or two words. He seemed to be doing well except for a bout of C-Diff which most of us beleive to be cleared up. His family has pretty much abandoned him, no visits, no contact. The patient is isolated the majority of the time, as are the others. (we are not in the best facility as you might have guessed) My question is, last week he was put on hospice. When I was passing meds, everything in his chart was d/c'ed except the antibiotic for the C-Diff and Akwa tears. Even his PRN pain meds like simple Tylenol were d/c'ed also. His glucerna shakes for extra calories were discontinued (people with HD can burn up to 5000 calories a day) He has become even more withdrawn and not interested in eating. He was on some pretty powerfull drugs, including 150mg of Effexor XR that he had been taking for the last 5 years. Instead of weening him off these meds, they just upped and stopped. Is this normal?? My pt. the ther day complained of being in A LOT of pain. I myself had to be weened off Effexor and it was not pleasent. Pain, brain shocks etc. Do they just stop meds when you go into Hospice?? They won't even give him anything for pain. The nurse said it may be the family's choice to do this. I can't see how you would let a pt. die in pain like this. I was just wondering if this is a normal accurance with Hospice? I really feel for my pt.

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Specializes in Fall prevention.

Hospice is all about palliative care and in my experience most medications were stopped but he should be receiving something for pain. If he is able to communicate even in only one or two words he should be the one who says if he gets pain med not the family. This must be terrible for him.

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this is just too sad for words...

why the hell is he even on hospice if he's not receiving comfort care???

since those w/advanced stage hd are at such a high risk for aspirating (r/t mass neuro deficits), then they either get g tubes or die from complications.

i would be concerned about his ability to swallow, and continuing on meds is too great a risk.

at end of life, we usually administer haldol (multi-purpose), opioids, sedatives...knowing that a couple of these meds can create additional rigidity and other undesirable se's.

it is inexcusable for this poor man not to be receiving any palliative care.

it's a sin!

i don't understand where hospice fits in.

assuming that you have all correct information, you need to find the publicized name of the ombudsman of this facility and call.

this man needs an advocate.

more than anything, it bothers me that he is so isolated.

even with cognitive deficits, this pt population remains highly aware of their environment, and suicide is high amongst those with huntington's.

hospice wouldn't only provide him with the meds he needs, but hospice volunteers could be spending time with him ea day, so he's not alone.

there is something seriously wrong with this picture.

and i truly hope someone calls the ombudsman.

too much danged apathy and there is no reason for it.

thank you for caring for this powerless soul.

leslie

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Specializes in Med/Surg.

It sounds like his family put him in a prison as a form of punishment. Can you not take it up with his physician? For goodness sakes, the man is dying, Effexor and Tylenol are not going to prolong his life. What a cruel family he has. I believe in karma.

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Specializes in LTC,Hospice/palliative care,acute care.

Eww-that's inhumane.I would make an anonymous call to the state department of health.Huntington's is a horrible disease.

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Well to top it off, this isn't an isolated incidence. The CNA's at this facility are horrible, calling tha patients names, and even while changing them sayng how bad it smells, not giving them privacy or a shread of dignity. When I was assigned my pt. they told me to be careful because he is combative and has explosive outburts. None of which I have seen, maybe an occasional cuss word if something I am doing hurts, but that is part of this disease. He has never been combative with me. I have stayed after rotation to read to him and do nail care etc. As far as I knw Hospice seems to come twice a week. Last week when they came, the LPN I was shadowing told me that they will give him a shower unless I wanted to. I didn't care one way or the other, and at that moment his hospice aide came. The LPN introduced me as my pt.'s nurse for the day. This is what the hospice girl did "Oh great, I got's nothing to do today" and she took off. All the hospice people are about 18-21, which seems a little young to me. The nurse asked me later about hospice taking his vitals and I said they left! Needless to say, of course I gave my pt. a bath, and he was not combative with me at all, I gave him dignity by covering his private area, which I have seen none of them do when they give these pt.'s showers. On top of all this craziness, and this isn't even the half of it, we confronted my instructor about the situation and she said that we are guests in their facility and that cannot afford to lose a clinical site. So she basically doesn't care about the pt.'s either.

I'm not sure what to do now. It pains me that this is going on, but I feel they would kick me out of school if I called state or complained. I have since become quite involved in the HD community. A few of my classmates and I even started a petition for the HD Parity Act (http://www.petitiononline.com/HR6259/petition.html)

I can't imagine what my pt. is going through. I have read him newsletter from the HD Indiana Chapter, and he has really enjoyed it. And the the saddest part is my pt. won a volunteer of the year award in 1988 from the HD Chapter for volunteering in pt. Care and companionship, now after all his hard work, no one is there for him.

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Oh and about the isolation, all they do with my pt. is feed him and put him to bed, all day long as they do with most residents. I wanted to take him outside after I was done last week and asked the nurse if it would be ok. All I had to do was change because my instructor said we could voounteer as long as we change out of uniform. By the time I came back they had already put him in bed. Also, I am too aware that he is at a great risk for aspiration and they lay him flat after every meal. I feel they are trying to kill him. And one more question, most of the pt. who are laid down all day, they leave them with no bottoms or breif on, so they go on a pad. This just doesn't seem humane.

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Wow, this is so sad! I'm not a nurse yet, but I just finished my CNA course and there were so many things I saw that I questioned. I too got a lot of 'this pt is this or that' and I never encountered these things either. I sat at a table of feeders one day and the CNA told the pt that 'no one likes to feed her because it takes too long'...granted, since I was a student, I didn't have all 12 pts. like each CNA did, but EVERYONE still deserves to be treated with respect. Just because someone is non-verbal does not mean they don't understand you, right? I felt so sad for a lot of the pts, but I made sure I treated them the way I would want to bed treated. I would smile inside when I'd be told by another CNA or nurse that this person never eats or never talks, but I could get them to say a few words or eat simply because I took the time to do so. I know this is an ideal situation and you don't always have the time to take, but it only takes a few seconds to brighten someone's day!

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Eww-that's inhumane.I would make an anonymous call to the state department of health.Huntington's is a horrible disease.

that's a good idea, except i'm wondering what their response time is?

only reasoned i mentioned ombudsman was likelihood of someone coming immediately to investigate.

public health would likely take weeks...

leslie

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Specializes in LTC/Rehab, Med Surg, Home Care.

Hospice meds where I work include anything that was previously prescribed that may be considered palliative. Using Effexor for HD is not something that I've heard of before, I'd be interested in the rational behind this for end stage HD.

Typically ativan, atropine drops, O2 for comfort, and morphine PRN are the meds we see, in varying doses based on the pts. needs.

I'm shocked to hear an HD pt. described as "alert and oriented".

I am a student nurse on rotation at an extended care facility. I was assigned a patient with Huntington's Disease. He is in he last stage of the disease, but alert and oriented although he can only respond in one or two words. He seemed to be doing well except for a bout of C-Diff which most of us beleive to be cleared up. His family has pretty much abandoned him, no visits, no contact. The patient is isolated the majority of the time, as are the others. (we are not in the best facility as you might have guessed) My question is, last week he was put on hospice. When I was passing meds, everything in his chart was d/c'ed except the antibiotic for the C-Diff and Akwa tears. Even his PRN pain meds like simple Tylenol were d/c'ed also. His glucerna shakes for extra calories were discontinued (people with HD can burn up to 5000 calories a day) He has become even more withdrawn and not interested in eating. He was on some pretty powerfull drugs, including 150mg of Effexor XR that he had been taking for the last 5 years. Instead of weening him off these meds, they just upped and stopped. Is this normal?? My pt. the ther day complained of being in A LOT of pain. I myself had to be weened off Effexor and it was not pleasent. Pain, brain shocks etc. Do they just stop meds when you go into Hospice?? They won't even give him anything for pain. The nurse said it may be the family's choice to do this. I can't see how you would let a pt. die in pain like this. I was just wondering if this is a normal accurance with Hospice? I really feel for my pt.
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Specializes in LTC/Rehab, Med Surg, Home Care.
Eww-that's inhumane.I would make an anonymous call to the state department of health.Huntington's is a horrible disease.

Or department of human services, something. It's a violation to just put a pad under someone.

I'm also not surprised that the family is uninvolved, not at all. Virtually everyone abandoned my family when my mom was dying--from huntington's. I can't begin to describe what my childhood was like.

People in our area have a bit better awareness now, and my brother has had a much more compassion from the community. Yup, we are in round two with this rotten disease.

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Why are you shocked to hear of an HD patient "Alert and Oriented"? He understands everything I say to him and can answer my questions. People don't realize that this disease is like being trapped in your own body. Treat people with HD in a dignified and caring manner throughout the course of their lives. Even when communication is severely limited or not possible, people with HD continue to understand if they are treated with dignity and respect, as do their families.

Hospice meds where I work include anything that was previously prescribed that may be considered palliative. Using Effexor for HD is not something that I've heard of before, I'd be interested in the rational behind this for end stage HD.

Typically ativan, atropine drops, O2 for comfort, and morphine PRN are the meds we see, in varying doses based on the pts. needs.

I'm shocked to hear an HD pt. described as "alert and oriented".

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