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Was This Handled Appropriately?

All discussions relating to bladder cancer symptoms, diagnosis, treatment and prognosis

Was This Handled Appropriately?

Postby Emest » Thu Jun 23, 2016 9:42 pm

Hi...  A friend of mine just passed away while on hospice care.  She had been diagnosed with bladder cancer with mets to liver, lungs, and bone.  Very fast decline I might add.  She was in the hospital for 2 weeks & sent home on hospice care.  She had a PICC line in her left arm which had a "bad cocktail" infusing continuous.  The cocktail included reglan, benadryl, decadron, ativan, and morphine.  She was receiving a total of 5 mg of morphine per hour IV.  Now, with that said...  We were told by the hospice nurse that her PICC line had "gone bad" and that it needed to be pulled out.  The nurse told us that her arm had some swelling, and it had swelled so much that there was a question if the line was patent.  They changed her morphine to roxanol 10 mg/hr by mouth every 1 hr routinely, and the rest of the medications were put in a topical gel form & was being given every 4 hrs as dosed by the pharmacist.  My friend seemed to be very comfortable even after the changes, but then about 4 hours after the line was taken out, she became somewhat restless.  Kept telling us she "needed" to get up, wanted to get out of bed, although she was definitely too weak to do so...she couldn't even speak in a normal tone, only whispered.  BUT she proceeded to continue to toss & turn in bed, grabbing the hand rails, and "talking out of her head".  We called the hospice nurse, and she came over to see her.  She told us this was a normal process called terminal agitation/anxiety.  That this was a sign of end of life.  She stayed here and tried to distract her, turned lights down, spoke softly, stroked her hair, asked visitors to leave the room for a bit.  After a little while, the nurse told us she felt that the roxanol needed to be increased to 20mg/hr because she was "grimacing" and my friend said she "hurt everywhere".  We agreed, because we didn't want her to hurt.  The nurse also put a catheter in because she felt that my friend may be having "urinary retention".  (at about midnight) After the catheter was placed and the dose of roxanol given, she calmed down greatly.  She only woke up occasionally, looked at us, and spoke things we couldn't understand.  But she looked peaceful.  By the next morning(at 8am), after receiving the roxanol every hour, she had become pretty much comatose.  She would "grimace" and moan every now and then, but would not open her eyes or move at all.  The nurse had stopped the topical gel and was only giving the roxanol.  An hour later, the nurse was unable to get a blood pressure, and her pulse was racing so fast that the nurse couldn't even count it.  She was not grimacing or moaning anymore, just very irregular breathing with "apnea".  The nurse didn't give any more roxanol to her because "she is not grimacing or moaning".  The nurse just stayed in the home & asked family members speak to my friend...let her know we were there, and tell her we loved her.  Because the nurse told us the "last thing to go will be her hearing".  It was definitely as pleasant of an experience as it could have been..well, that's how I feel.  But I can't help but ask...  Did she receive too much roxanol?  Could that medicine have put her in a coma?  Was the situation handled appropriately by the hospice nurse?  I guess this is my way to cope...  Thank you

ANSWER: Dear Lindsay:

What a tremendous letter!  I'm honored that you have shared all this with me!

Let me respond to your last question first: did she receive too much roxanol?  No, it doesn't sound like it.  In fact, I would have continued small doses every 30 minutes or so until the end.  Just because the moaning and grimacing stop does not mean pain has stopped, it is simply that the body has lost the ability to express the discomfort.  BUT, that said, it also sounds like it was a very peaceful passing, which is the goal.

You do not mention your friend's age, but my sense is that she was relatively young, maybe less than fifty.  To be diagnosed with bladder cancer with all those metastases means she had been ill for quite a while and ignored symptoms like pain, blood in urine, that sort of thing.  Quite a stoic lady.  With all those metastases, decline would be fast--a well functioning liver cleans out toxins, kind of like a water filter cleans water.  Her blood was building up the toxins of living, as well as the toxins produced by dying tissue from her cancer.  In truth, fast would be the way to go, for someone that ill.  My heart goes out to her.

I had not heard the term "bad cocktail" before.  The ingredients are wonderful and most appropriate for someone with terminal cancer.  Reglan is for nausea and it works by helping the stomach empty itself faster.  Nothing in there, nothing to throw up.  Since some people get nauseated from morphine, this was a good thing to have in the mix.  Benadryl can keep down inflammatory response, and also enhances a more peaceful feeling.  No surprise it is a common over the counter sleep aid.  Decadron is also an anti-inflammatory, and gives a sense of peace and perhaps happiness.  Ativan is a wonderful "anxiolytic," in other words, it "cuts" anxiety.  Morphine you know--probably the best pain reliever going.  I don't know who her doctor was but kudos to him or her.

Normally hospice patients do not get injections or PICC lines but if the lines are already in, what a great way to manage symptoms.  Again, kudos!  As for the line "going bad," PICC lines should be "flushed" once a day(in the hospital, it is once a shift, so, every 8 hours).  Because the line is a tiny open tube sitting in the vein with blood flowing by, it is possible, since it is a foreign body, that white cells and red cells and platelets can start to congregate around the ends.  So, we flush each of the lines(often there are three or four separate lines) with saline, and then with heparin, just enough to fill the tube and have a little bit drip out, to discourage those cells from congregating.  As long as that is done reasonably often, PICC lines don't "go bad."

Switching to roxanol and putting the other ingredients into a topical gel is a perfectly reasonable way to deliver the same relief, except for one thing, okay, two things.  Anything that goes through the digestive system(oral meds) will be subjected to digestive juices and also to the liver, before getting to the blood stream.  This takes a little while, generally 30 to 45 minutes, and it generally means that not all the medication gets into the blood stream.  (That concept is called "bioavailability" and refers to how much of the med can actually be used.)  Dosages are therefore different if given by mouth than by IV--or PICC--because in the latter, 100 percent of the med gets into the blood stream and the effects are often felt within moments.  Topical medications also have a delayed effect.  BUT, without an IV access, these two routes are perfectly fine and also are comfortable and "dignified" for the patient.

The swollen arm makes me think that a clot had formed in a vein somewhere below the swelling.  PICC lines usually sit in the superior vena cava, which is that huge vein that goes into the right atrium of the heart(the first chamber of the heart to receive blood returning from the body).  But I was not there, and I cannot say whether the line was no longer patent.  There are ways to clear lines that aren't open any more, but given your friend's condition, it is also likely that the plan that made the most sense in terms of her well being and comfort, was to remove the PICC line and change medications to oral and topical.

The dosage of roxanol seems appropriate to me.  We hospice nurses will always err on the side of giving a little more medication for pain rather than a little less, because our goal is comfort.  I have given a little more than your friend received, given the appropriate situation.  The restlessness you observed could have been from the morphine, or not enough ativan, but it is also possible that there were by this time tiny clots that could have lodged in places in her brain that caused her to feel anxious and(sounds like) rather driven.  The sense of needing to get up, etc., could also have been from a little bit of delusion.  Sick people do not think clearly and she could have had the sense, for example, that she needed to go to the bathroom, or she might have thought she needed to get up to perform some task she used to do before she became ill.

At that point, my temptation, as a hospice nurse, would have been to get the doctor to permit increasing the frequency of the gel.  Terminal agitation is actually pretty common as death nears, but we consider that it is most likely uncomfortable and certainly disconcerting for the patient(not to mention the family) and we medicate for that with an anxiolytic, typically ativan, until the patient is relaxed again and appears comfortable.

I am a little surprised that the catheter was placed so late in the process, but it may be that I have not understood all the details of her ability to manage her urination.  It does sound like the nurse was right, given that the catheter placement seems to have helped her calm down.  And kudos to the nurse, it sounds like she was caring for your friend from her heart as well as her mind.  How wonderful to have had someone there who was so dedicated and loving.

That your friend said things you could not understand does tend to support the possibility that small clots were forming and/or lodging in her brain, as inability to form words when trying to communicate is one sign of a stroke(I'm not saying she had a stroke, just that some of the symptoms you describe are consistent with clots in certain parts of the brain).

Decreased blood pressure, even in someone who is not dying, does result in rapid heart rate, because the low pressure signals, hey, we're not getting enough blood flow out here(so to speak), so the heart works hard to fix that problem.  All that makes perfect sense to me.  I will say that I don't worry about taking blood pressure at the end, since extremities typically are getting cooler and "mottled"(a kind of blotchy look that can have shades of pink, tan, blue and/or purple), I know that blood pressure is not being maintained.  I sometimes check the pulse, but I do it in such a way that the patient experiences only that I am touching them in a soothing way.  Probably your friend's hospice nurse did the same--she sounds like she was very good!  The irregular breathing was indeed, typical of the end.  The body no longer needs as much oxygen because it is shutting down, as opposed to maintaining life.

As for the roxanol causing the coma, even without being there I'd have to say, no.  Coma comes at the end of life as the brain winds down and no longer has enough ooomph to do anything other than stay alive.  It is the last sleep.  One way you can be sure of this is, the nurse stopped giving roxanol before your friend actually died.  Had the coma been caused by the roxanol, she might have awakened.  But she didn't.  She remained at peace and calm through her passing.

That the hospice nurse encouraged people to stay close and keep saying soothing things was exactly the ideal way to manage the end of life.  You are right, it was as pleasant an experience as it could have been!

I have not read or heard such a beautiful account of a hospice death in some time.  You have reminded me of many of the reasons why I am grateful to be able to do this work.  Thank you, Lindsay, for writing to me.

God bless you, and thank you for being such an amazing and wonderful friend.

Christine

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

Thank you, Christine, for the prompt response.  Death is such a hard thing to deal with, and getting some much needed answers definitely aid in the grieving process.  I wanted to give a couple more details of the account.  I spoke with a family member, and the nurse actually did increase the ativan to 1 mg every hour(in a paste that was put inside her lip) when the initial "restlessness" began, in addition to the relaxation techniques she tried, and the nurse actually did tell the family that the arm that the PICC line was in looked as if it had a "thrombosis".  Which the nurse stated was a "complication" of having a PICC line.  I hope I didn't seem like I was trying to say the nurse didn't do her job...she was just wonderful.  I suppose I just didn't understand some things, and wanted clarification.  I believe I also just wanted to share publicly that there really are caring, compassionate nurses still out there...  I've heard so many "complaints" that I felt this story should be shared so others can rest assured that death, although very hard to experience, can be a very peaceful event.  Thanks again for your time...
Emest
 
Posts: 55
Joined: Tue Dec 31, 2013 10:14 pm

Was This Handled Appropriately?

Postby Osrid » Fri Jun 24, 2016 2:02 am

Dear Lindsay,

Not to worry, my dear, it's all good.  I'm so glad you shared so much with me and with anyone who reads these communications.  I need reminding about good and caring nurses too--sometimes it is very frustrating to see what passes for good care these days.  I felt uplifted when I read your notes.  Thank you so much for writing.

Take care, and God bless you.

Christine
Osrid
 
Posts: 57
Joined: Wed Jan 08, 2014 7:45 pm

Was This Handled Appropriately?

Postby Skah » Fri Jun 24, 2016 9:02 am

Hi...  A friend of mine just passed away while on hospice care.  She had been diagnosed with bladder cancer with mets to liver, lungs, and bone.  Very fast decline I might add.  She was in the hospital for 2 weeks & sent home on hospice care.  She had a PICC line in her left arm which had a "bad cocktail" infusing continuous.  The cocktail included reglan, benadryl, decadron, ativan, and morphine.  She was receiving a total of 5 mg of morphine per hour IV.  Now, with that said...  We were told by the hospice nurse that her PICC line had "gone bad" and that it needed to be pulled out.  The nurse told us that her arm had some swelling, and it had swelled so much that there was a question if the line was patent.  They changed her morphine to roxanol 10 mg/hr by mouth every 1 hr routinely, and the rest of the medications were put in a topical gel form & was being given every 4 hrs as dosed by the pharmacist.  My friend seemed to be very comfortable even after the changes, but then about 4 hours after the line was taken out, she became somewhat restless.  Kept telling us she "needed" to get up, wanted to get out of bed, although she was definitely too weak to do so...she couldn't even speak in a normal tone, only whispered.  BUT she proceeded to continue to toss & turn in bed, grabbing the hand rails, and "talking out of her head".  We called the hospice nurse, and she came over to see her.  She told us this was a normal process called terminal agitation/anxiety.  That this was a sign of end of life.  She stayed here and tried to distract her, turned lights down, spoke softly, stroked her hair, asked visitors to leave the room for a bit.  After a little while, the nurse told us she felt that the roxanol needed to be increased to 20mg/hr because she was "grimacing" and my friend said she "hurt everywhere".  We agreed, because we didn't want her to hurt.  The nurse also put a catheter in because she felt that my friend may be having "urinary retention".  (at about midnight) After the catheter was placed and the dose of roxanol given, she calmed down greatly.  She only woke up occasionally, looked at us, and spoke things we couldn't understand.  But she looked peaceful.  By the next morning(at 8am), after receiving the roxanol every hour, she had become pretty much comatose.  She would "grimace" and moan every now and then, but would not open her eyes or move at all.  The nurse had stopped the topical gel and was only giving the roxanol.  An hour later, the nurse was unable to get a blood pressure, and her pulse was racing so fast that the nurse couldn't even count it.  She was not grimacing or moaning anymore, just very irregular breathing with "apnea".  The nurse didn't give any more roxanol to her because "she is not grimacing or moaning".  The nurse just stayed in the home & asked family members speak to my friend...let her know we were there, and tell her we loved her.  Because the nurse told us the "last thing to go will be her hearing".  It was definitely as pleasant of an experience as it could have been..well, that's how I feel.  But I can't help but ask...  Did she receive too much roxanol?  Could that medicine have put her in a coma?  Was the situation handled appropriately by the hospice nurse?  I guess this is my way to cope...  Thank you

ANSWER: Dear Lindsay:

What a tremendous letter!  I'm honored that you have shared all this with me!

Let me respond to your last question first: did she receive too much roxanol?  No, it doesn't sound like it.  In fact, I would have continued small doses every 30 minutes or so until the end.  Just because the moaning and grimacing stop does not mean pain has stopped, it is simply that the body has lost the ability to express the discomfort.  BUT, that said, it also sounds like it was a very peaceful passing, which is the goal.

You do not mention your friend's age, but my sense is that she was relatively young, maybe less than fifty.  To be diagnosed with bladder cancer with all those metastases means she had been ill for quite a while and ignored symptoms like pain, blood in urine, that sort of thing.  Quite a stoic lady.  With all those metastases, decline would be fast--a well functioning liver cleans out toxins, kind of like a water filter cleans water.  Her blood was building up the toxins of living, as well as the toxins produced by dying tissue from her cancer.  In truth, fast would be the way to go, for someone that ill.  My heart goes out to her.

I had not heard the term "bad cocktail" before.  The ingredients are wonderful and most appropriate for someone with terminal cancer.  Reglan is for nausea and it works by helping the stomach empty itself faster.  Nothing in there, nothing to throw up.  Since some people get nauseated from morphine, this was a good thing to have in the mix.  Benadryl can keep down inflammatory response, and also enhances a more peaceful feeling.  No surprise it is a common over the counter sleep aid.  Decadron is also an anti-inflammatory, and gives a sense of peace and perhaps happiness.  Ativan is a wonderful "anxiolytic," in other words, it "cuts" anxiety.  Morphine you know--probably the best pain reliever going.  I don't know who her doctor was but kudos to him or her.

Normally hospice patients do not get injections or PICC lines but if the lines are already in, what a great way to manage symptoms.  Again, kudos!  As for the line "going bad," PICC lines should be "flushed" once a day(in the hospital, it is once a shift, so, every 8 hours).  Because the line is a tiny open tube sitting in the vein with blood flowing by, it is possible, since it is a foreign body, that white cells and red cells and platelets can start to congregate around the ends.  So, we flush each of the lines(often there are three or four separate lines) with saline, and then with heparin, just enough to fill the tube and have a little bit drip out, to discourage those cells from congregating.  As long as that is done reasonably often, PICC lines don't "go bad."

Switching to roxanol and putting the other ingredients into a topical gel is a perfectly reasonable way to deliver the same relief, except for one thing, okay, two things.  Anything that goes through the digestive system(oral meds) will be subjected to digestive juices and also to the liver, before getting to the blood stream.  This takes a little while, generally 30 to 45 minutes, and it generally means that not all the medication gets into the blood stream.  (That concept is called "bioavailability" and refers to how much of the med can actually be used.)  Dosages are therefore different if given by mouth than by IV--or PICC--because in the latter, 100 percent of the med gets into the blood stream and the effects are often felt within moments.  Topical medications also have a delayed effect.  BUT, without an IV access, these two routes are perfectly fine and also are comfortable and "dignified" for the patient.

The swollen arm makes me think that a clot had formed in a vein somewhere below the swelling.  PICC lines usually sit in the superior vena cava, which is that huge vein that goes into the right atrium of the heart(the first chamber of the heart to receive blood returning from the body).  But I was not there, and I cannot say whether the line was no longer patent.  There are ways to clear lines that aren't open any more, but given your friend's condition, it is also likely that the plan that made the most sense in terms of her well being and comfort, was to remove the PICC line and change medications to oral and topical.

The dosage of roxanol seems appropriate to me.  We hospice nurses will always err on the side of giving a little more medication for pain rather than a little less, because our goal is comfort.  I have given a little more than your friend received, given the appropriate situation.  The restlessness you observed could have been from the morphine, or not enough ativan, but it is also possible that there were by this time tiny clots that could have lodged in places in her brain that caused her to feel anxious and(sounds like) rather driven.  The sense of needing to get up, etc., could also have been from a little bit of delusion.  Sick people do not think clearly and she could have had the sense, for example, that she needed to go to the bathroom, or she might have thought she needed to get up to perform some task she used to do before she became ill.

At that point, my temptation, as a hospice nurse, would have been to get the doctor to permit increasing the frequency of the gel.  Terminal agitation is actually pretty common as death nears, but we consider that it is most likely uncomfortable and certainly disconcerting for the patient(not to mention the family) and we medicate for that with an anxiolytic, typically ativan, until the patient is relaxed again and appears comfortable.

I am a little surprised that the catheter was placed so late in the process, but it may be that I have not understood all the details of her ability to manage her urination.  It does sound like the nurse was right, given that the catheter placement seems to have helped her calm down.  And kudos to the nurse, it sounds like she was caring for your friend from her heart as well as her mind.  How wonderful to have had someone there who was so dedicated and loving.

That your friend said things you could not understand does tend to support the possibility that small clots were forming and/or lodging in her brain, as inability to form words when trying to communicate is one sign of a stroke(I'm not saying she had a stroke, just that some of the symptoms you describe are consistent with clots in certain parts of the brain).

Decreased blood pressure, even in someone who is not dying, does result in rapid heart rate, because the low pressure signals, hey, we're not getting enough blood flow out here(so to speak), so the heart works hard to fix that problem.  All that makes perfect sense to me.  I will say that I don't worry about taking blood pressure at the end, since extremities typically are getting cooler and "mottled"(a kind of blotchy look that can have shades of pink, tan, blue and/or purple), I know that blood pressure is not being maintained.  I sometimes check the pulse, but I do it in such a way that the patient experiences only that I am touching them in a soothing way.  Probably your friend's hospice nurse did the same--she sounds like she was very good!  The irregular breathing was indeed, typical of the end.  The body no longer needs as much oxygen because it is shutting down, as opposed to maintaining life.

As for the roxanol causing the coma, even without being there I'd have to say, no.  Coma comes at the end of life as the brain winds down and no longer has enough ooomph to do anything other than stay alive.  It is the last sleep.  One way you can be sure of this is, the nurse stopped giving roxanol before your friend actually died.  Had the coma been caused by the roxanol, she might have awakened.  But she didn't.  She remained at peace and calm through her passing.

That the hospice nurse encouraged people to stay close and keep saying soothing things was exactly the ideal way to manage the end of life.  You are right, it was as pleasant an experience as it could have been!

I have not read or heard such a beautiful account of a hospice death in some time.  You have reminded me of many of the reasons why I am grateful to be able to do this work.  Thank you, Lindsay, for writing to me.

God bless you, and thank you for being such an amazing and wonderful friend.

Christine

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

Thank you, Christine, for the prompt response.  Death is such a hard thing to deal with, and getting some much needed answers definitely aid in the grieving process.  I wanted to give a couple more details of the account.  I spoke with a family member, and the nurse actually did increase the ativan to 1 mg every hour(in a paste that was put inside her lip) when the initial "restlessness" began, in addition to the relaxation techniques she tried, and the nurse actually did tell the family that the arm that the PICC line was in looked as if it had a "thrombosis".  Which the nurse stated was a "complication" of having a PICC line.  I hope I didn't seem like I was trying to say the nurse didn't do her job...she was just wonderful.  I suppose I just didn't understand some things, and wanted clarification.  I believe I also just wanted to share publicly that there really are caring, compassionate nurses still out there...  I've heard so many "complaints" that I felt this story should be shared so others can rest assured that death, although very hard to experience, can be a very peaceful event.  Thanks again for your time...
Skah
 
Posts: 44
Joined: Sun Apr 20, 2014 11:34 am


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