Expert: Violet Argo RN - 7/3/2004

Question
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Followup To
Question - hydra-morphone which I was told by his dr. was the same as dilaudid, just a different name.
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Followup To
Question - the cadd-pump was on 6mg., this I got from the drs. daily input sheet, and the cadd was allowed 1 break through (according to the nurse when my husband asked her how it worked), he was fine on that last day having visits from both myself and later his 2 sisters, went outside for a cig, which leads you to believe he is still hanging in there even though after the fact, the sisters do admit noting this ajitation of some sort that he had that last week, they said like he had to keep busy - I say now it was because he did not know his pain med. was being lowered. I realize the lowering of the pain med. does not make sense but when you put it all together - it does. I did check him thoroughly after being told he had ripped out the cadd (mainly bacause I happen to be one of the worst patients in the world and have done numerous pull outs of intravenous lines - I was looking for a rip in the skin, a pull out mark)I found none. All I found was what to me looked like when the nurse pulls out the line and tapes it up - one small little hole without rips. The pain flow sheet then shows after the cadd was removed the 12mg. of dilaudud was administered intravenously, and then a strke each spot indicating another bt given - the bt was 6mg. I don't believe you can go from 6mg - to 12mg without a considerable change - like sleep. And because the pain flow I believe was being lowered slowly before the big bang, it actually hits a patient harder because they weren't getting their normal 6mg. dose. He did wake up once 2 days later screaming and kicking and saying he had to get up and like an idiot I rang the nurse and in the pain flow sheet it is noted he is given a 12 and a bt together. He want way down and did not even respond to my touch after that. I knew something was amiss. I do believe it is better to go to sleep and not suffer the pain and everything that goes with that terrible disease - I just want it to be by choice, and thoroughly discussed - with questions. We dont' have hospice in Canada, just palliative care/terminal ill units at the hospital. If we do have them, I don't know about them - I have seen programs on them and this would have been perfect - because at the beginning of all this - I had to keep telling them about the quality of life thing  - It was his choice not theirs, and they should do as he asks. He did not complain of pain and is noted in the nurses remarks as such, but a bt is given staing he just doesn't want to admit it. I said it was his choice - he had me bring his books and microscopes and other items to the hospital to have something to do. I explained to the nurse and his dr. that he would rather have a little pain in his leg and hip and be able to read his book. That is just the way he was, but they didn't seem to hear me or care to.
Thanks, G.
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Followup To
Question - The cadd pump was only attached after MY SCREAMING ABOUT GETTING ONE. They had been giving him so much meds. that he was delerious and crying, and telling them he didn't want anymore - so I insisted on the cadd pump - therefore he could control it himself. After 1 week of total great pain control, I started to notice a jittery, sort of anxiousness about him. After he passed I got the papers and I did see where the numbers had lowered on these specific days. On a specific day, when the number was now at 65, a nurse that had only looked after him once before came to me and said "Iam going to ask for the big Dilaudid tonite" If I had been informed along with my husband we would have known what this meant - and as the pain flow sheets show, he did receive that evening (after cadd pump was removed stating he was pulling at it and ripped it out)a large dose of 12 mg. and another 4 hrs. later and so on. He went to sleep and never woke up again, he just went farther and farther down with the continual 12 mg. doseages being given. Yes he had terminal cancer, and yes he probably had no more than a couple of weeks left maybe, but my whole point of the confrontation of the drs. and nurses is that it is supposed to be his choice when, not theirs. I do want to get as much under my belt before I get in there so as not to make myself look non-medically trained, as one mediator already told me. I just said if I can read I can understand - mediate and don't make comments, that is not a mediators job! So, I will plug along and hopefully this will end up with them just mainly understanding the patients point of view, I will tell you when it is time or my wife will - as we know each other better than any nurse or dr. could assume to, therefore knowing each others feelings and what nots. This is just my last thing to do for him, and I want to make sure I do it right. Thanks ever so much for all your help, G. W.
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Followup To
Question - No I can not do that as I am in the middle of a complaint about specific things that happened to my husband. So this is impossible. I am going to take it that whatever number is published on the patients pain flow sheet indicates the: fact that they received a regular dose, a bt dose or if there is a number there, this number signifies somehow the pain med. level the patient got. I am sorry to have wasted your time and mine. I just want to make positively sure I know what I am talking about before I walk into any meeting where I am accusing someone of something. The numbers marked down on his pain flow sheet from the day he went on the cadd-pump are dropped 2-3 notches each entry. This disturbed me as his demeaner was fine when we first received the cadd-pump and then I started to notice a difference in his demeanor, in that, he was trying to stay focused and keep moving, keeping busy so to speak and I couldn't figure out why. After he passed away I requisitioned the med. records and poured over them with a fine touth comb, and this was one of my findings as well as the main reason for the meeting - terminal sedation which is very clearly catalogued by a specific nurse. I wanted to make a map so to speak leading to the ts. day. Thanks for all your help and if you can give anymore I am a sponge for information right now. Thanks again, G.
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Followup To
Question - Okay, I understand, so this number should only change if, say the nurse is trying to deterrmine whether the patient needs more or less, and when this is found they stick on this number. Now, my problem here is the numbers start at 98, and then ever so slowly decrease in number to the final number of 65, approximately a week to a week and a half later. This is then the pain med being lowered gradually, correct?-------------------------
Okay, I have a copy of the pain flow sheets that the nurse that hands out the meds fills out daily when she hands out the meds., checks for breakthrough medication needs and writes these in as well, along with a number from the cadd-pump. Now this number - if being placed on the PAIN FLOW SHEET" must have something to do with the level of med. that is being given. When a patient is on the cadd-pump they are normally given the same amount of pain med. that they were receiving when taking it by injection, only it is modified because of the continuous flow. I understand that part - for instance (these are not correct numbers, just using for an example)if you were taking 8mg. every 4 by injection, now you would be ? continuous flow by the cadd-pump. The number that I am referring to is the number that the pain med. nurse places on the patients pain flow sheet showing ? med dispensed? It must be a percentage then because if she is putting it on a PAIN FLOW SHEET - this is the purpose of this sheet, to show the patients intake of pain med on a daily basis. I just want to be perfectly clear that the number that she refers to on the cadd-pump to write in this pain flow sheet is not referring to anything else other than pain flow med. in the cadd-pump. I hope this more clear - if not, I will try again. Perhaps I may need to scan and copy the pain flow sheet to show my meaning, but I am sure you know what I am speaking of when I say "pain flow sheet" and cadd-pump. Thanks for any assist you can give.  
Answer -
I am going to try to answer the question based on the information you have provided. The numbers the nurse should be recording on the flow sheet should be:
1. The total amount of medication dispensed continously for either that shift, or the past 24 hours.
2. She should also be recording the number of bolus or breakthrough doses the patient has gotten because the continous dose may need to be increased or decreased based on pain needs.
All pain medication both oral and via pump is then evaluated to decide on adjustments.
To use your example, if a patient is geting 8mg every 4 hours and is now on a continous cadd pump, the dose should be 2mg continoulsly, but they usually program in a PRN dose for breakthrough dose for example 1mg every 30 minutes that the patient can self-administer. Then the total ammount administered is documented on the flow sheet.  
I hope this helps.
Answer -
OK.we are back to square one.  I do not know what the number 98 means.  Pumps can be very different and I may not be familiar with the one you are writing about. I was reffering to actual miligrams displayed on the pump.  I seems to have wasted your time.  Have you considered asking the nurse as she programs the pump?
Answer -
I am truly sorry for your loss.  I cannot help since  I do not know your husbands diagnosis.  I do not know if the change in his condition was as a result of his desease process, or of over medication. Have you considered speaking with the makers of the pump, they are usually willing to give info on their equipment.  Did I correctly understood your reply that the numbers dropped? and if I did, did that mean he got less medication than he needed. Less would cause more pain and anxiety. More would cause increased sedation or comfort.  Increased sedation may be desirable if the patient's pain is out of control. Patients in the later states of desease have many many symptoms.  The desease also accelerates quickly. As a hospice nurse on almost 12 years I do see may many patiens just prior to death, and each person is very diferent.  Please, when you get to your meeting, prior to actually voicing your complaint, have the people involved explain the machine to you righ there in the meeting.  Do not be afraid to say you need this information prior to the discussion.
Answer -
What drug was in the cadd pump and what dose?, was the dilaudid 12 MG every four hours? do you feel he got palliative sedation with out your consent?  was he under hospice care?
Answer -
G, what drug was he on before the dilaudid?

Answer
Miss, G, Yes dilaudid is the brand name for hydromorphone.  I would like for you to think of a few things.
1. If your husband was on 6mg of dilaudid around the clock this means he was on 144 mg daily.
2. If the dose was changes from IV to injectable 12 mg every 4 hours that would be 6 doses per day (plus breakthrough doses)this is 72 mg per day.  This is a decrease in dose.  If I am correct, then he was not terminally sedated.
3. Going from 6 continously to 12 every 4 is not only correct, but very conservative, they could have gone higher with no adverse effect.
The agitation you described may be what is called terminal restlessnes. This agitation is very dificult to get under control.  I would also like you to be aware that many many people just prior to death, have a burst of energy and visit with family, especially those they have not seen in some time. They may also eat a whole meal even if they had not done so for several days. They can have entire conversations. This energy does not last and usually death follows quickly. They may or may not go into a coma-like state. Also please know that if he did pull his IV site out you may not see much evidence of trauma, mainly because the skin may be somewhat dehydrated, or if the site had been in for 2-3 days.
Miss. G, I am not saying you may not have valid concerns, I am saying that in my experience as a hospice RN, the dosing (according to what you have told me)was correct, and your husband may have died from desease process.  If you would like to talk to me about this My e-mail is vea@tampabay.rr.com and I am also on MSN instant messenger vea@passport.com we can instant message. You sound like you could use a friend about now.  Do you mind telling me what kind of cancer your husband had and how long he had it.  I would also like to know if he was still being treated for the cancer when he died and if he got chemo and or radiation.