Managing symptoms for a �good death� - page 8

1. 
   Feb 4, '07

   Occupation: Case Manager Hospice Joined: Mar '06; Posts: 96; Likes: 17

   River1951 I have been "under the bed" myself. I was sorry to read about your co-worker. That stinks. That is what makes truthful hospice such a challenge to us. We don't work hospice. Hospice works us, if we let it. To our great gain and to our pts great benefit. In the 1980's I worked in an inpt hospice were the med dir had sought out Dr. Saunders in England and the SW was a Buddhist. I had NO idea this was ground breaking work. Back then we read Kuebler-Ross, Ram Dass, Levin and openly asked among ourselves, is your intervention for you or the pt? No vital signs, no uniforms. Just you doing what you knew to do. Boy Howdy, THAT was something. Truely conscious deaths are rare. I had one pt who had struggled with death imminent for days. Her daughters were young women with children of their own. Out of her own exhaustion, one daughter crawled into bed with her Mom and their breaths synchronized. Just as the daughter feel asleep her Mom died. Conscious? I think so, at some level. Today, i go into a pts home. I try for an open attitude of respect for all, especailly great respect for death. I can do the hocus pocus of med mixtures but I really try to tune into what the pt wants and let that be the music (as it were). I then try to guide care/love folks into hearing that
   music. Sometimes I have to reach deep into the med bag, sometime very little if at all. For me, to evaluate a death the focus shifts to the folks. It is a good death if their hearts are not so wounded that they will not heal and they say, " Hospice helped." Hospice is much more art than science and I tell my pt/folks that. You are all right. Ten artists will paint the same tree ten different ways, all beautiful. Me, I want to die laughing with God slapping his knee next to me at my good joke.
2. 
   Feb 5, '07

   Occupation: Writer - on Dying Process Specialty: Med-Surg, ER, ICU, Hospice ; From: US ; Joined: Apr '05; Posts: 296; Likes: 136

   BeExcellent…
   
   Interesting stuff.
   
   Way back when I was an orderly (the term “orderly” gives you an idea of how long ago that was) there was an announcement that some lady from Chicago was going to speak on death & dying in the conference room. I did not attend. I was too busy trying to make a living on $2.87/hr. The lady’s name? Elizabeth Kubler-Ross.
   
   In the case of the daughter falling asleep with her mom… did the daughter say anything afterwards? Did she “dream” anything?
   
   Michael
3. 
   Feb 5, '07

   Occupation: Case Manager Hospice Joined: Mar '06; Posts: 96; Likes: 17

   Micheal and all, the daughter didn't say anything about a dream. In fact, it wasn't as wonderful as it sounded. Daughter woke up with a start and without even looking at her Mom yelled "I killed Mom!". It took some doing to talk her down to the sense that she had not done anything but comforted her Mom and maybe gave Mom the security to die.
   We all have hundreds of stories but here is one of a different slant. I was working in a Catholic hospital and a nun had just died. As I left the room to call the doctor to inform him, another nun entered the room and began to quietly pray over the deceased. I heard her say, "Sister, Don't leave me."
   No real surprise at ending. When I came back into room pt was sitting up and asking for water. I called the doctor back and laid blame of second call on praying nun. Pt lived a few more days and did die but had a nice chance to say good byes to all.
   You might not have appreciated Kubler-Ross in person. For those that never heard her, she had a very thick accent and a rather unremarkable presence. But she was a pioneer of thought that is cornerstone today. Her later writings were affected by her physical challenges and "out there". I thought she may have been affected by multi mini strokes that caused vivid hallucinations. (Or maybe she could have lunch in NewYork and still be home in California.) Who knows?
   
   Wave at a jackrabbit for me today.
4. 
   Feb 5, '07

   Occupation: Writer - on Dying Process Specialty: Med-Surg, ER, ICU, Hospice ; From: US ; Joined: Apr '05; Posts: 296; Likes: 136

   We have all heard of patients who “died,” then wake up… or “un-die” for a time. I only saw it once (while in ICU.) We coded a guy for quite awhile and finally it was called. Ten or fifteen minutes later a nurse walking by the room noticed a rhythm on the monitor. The guy woke up and the last I saw of him he was sitting up in bed talking to his wife and being wheeled out to the floor. I heard he died again a couple of days later, but that time it stuck.
   
   A patient I pronounced (while in hospice) gave me this nagging, persistent sense that he was trying to get back into his body. I don’t know why, but I just felt like his dying had taken him by surprise and he was not ready. I stalled quite awhile before actually writing down the time of death and calling the funeral home. I talked with his wife for some time but kept going back into the patient’s room, half expecting to see him sitting up. Having a guy sit up in a hearse after I had pronounced him would have been very embarrassing to say the least. I suppose it could happen though. I saw a documentary once about a guy in Russia who lay “dead” in a cooler in a morgue for 3 days, then woke up and was fine.
   
   Anyway, I agree with River that it would be good for hospice nurses to share experiences, impressions, thoughts etc. No academic institution or hospice organization is making an attempt to study dying process so if it is going to be done at all it will have to be done by us. Even an informal study based on anecdotal data, limited and flawed as it may be, is better than no study at all.
   
   I would like to invite input on the notion that “hitting the emotional wall” is a transient phenomenon… a stage or phase in a larger process.
   
   For example; in Elizabeth Kubler-Ross’s grief process outline the patient is expected to be in “anger” at some point… but we don’t expect them to stay there permanently. We expect it to be one of several stages they will go through in a larger process. So it might be logical to assume (and I have seen it many times) that a stage of emotional crisis (sometimes diagnosed as “terminal agitation” and treated as a permanent condition) might actually pass of its own accord… or might be passed more quickly with appropriate intervention and support. Of course there are those whose terminal agitation is persistent… perhaps permanent. But I think there is a distinction which deserves study, lest everyone who gets riled up at one point or another is put on a mind-numbing regime of meds which could hinder their dying process by interfering with their resolutional tasks.
   
   I think we should also keep in mind that it is not just patients who experience these processes; i.e. grief & transitions. Family members and those who have grown close to patients also go through complete grief and transition processes. Hospice nurses inevitably become close to patients from time to time, and when that happens they can expect to experience grief and/or transition process themselves. In which case it would be good to develop familiarity with what that involves.
   
   And this is not just academic theory, it has practical implications in our daily lives. For example; one of the last times we moved my wife said to me a couple of days prior to our departure, “I’m scared. I am just plain scared.” Now understand, this whole move was her idea in the first place and here she was bordering on panic. I said, “I know. You have hit the 4th stage… the emotional barrier. I felt it myself day before yesterday. I experienced it as waves of inexplicable, intense anxiety. But it passed… and yours will too.”
   
   It did. No meds were required.
   
   One of the primary points I am trying to make is that it is important to realize that the stages of transitions are normal… to be expected. Before Elizabeth K-R came along we tended to view grief as pathologic. In the post-Elizabeth era we realize grief is normal… even healthy. The same goes for transitions. There comes a time when we are supposed to be scared out of our ever-loving wits. That is normal, not pathologic. That means we are real human beings, not freaks.
   
   Michael
5. 
   Feb 5, '07

   Occupation: Case Manager Hospice Joined: Mar '06; Posts: 96; Likes: 17

   The hospice art is being able to ascertain who is dying and who is still working toward dying and offer succor as appropriate. Decreased LOC, terminal agitation, audible respiratory secretions and increased pulse these are part of a process of imminent death. Each has a well documented physiologic reason and often a perfectly good med management, if indicated. PRIOR to the train starting to leave the station, the pt can experience any of these with an emotional/spiritual cause. The intervention changes. Haldol to handholding. comprende compadres?
   As for fear, there is fear, there is FEAR and then there is internal body alarm systems going, "Warning! Warning! Do something. Fight, flee, pray, but the heart you call home is about to stop." No text can tell you the difference between a somatic body system rush and the angst of emotional fear and pain. (All the above applies to the folks involved.)
   Sometimes the best place for the pt/folks to be during the process is on the river de Nile. Everyone can be on that river and floating on but I try to stand by with the paddles.
6. 
   Feb 6, '07

   Joined: Jul '06; Posts: 99; Likes: 2

   Well said! Standing by with the paddles. That was always what I told my patients- I will walk with you. You will not be alone. I think the relationship is what can make a difference. I always used meds as the patient desired- they do get to pick- it is their death, after all. Bit the meds are not the reason for the game.
   We seem to find the most awful problems with the totally dysfunctional families- they can decompensate at the drop of a hat and try to take everyone along with them.
7. 
   Feb 7, '07

   Occupation: Case Manager Hospice Joined: Mar '06; Posts: 96; Likes: 17

   Families are always like herding cats. I try to figure out the one most likely to have a hard time healing the heart and I put that one in charge of something. Sometimes I ask them to check the comfort kite everyday, or call me at 4pm. So often, the folks try to protect each other. Once in a great while you get a family member that is just plain looney and has issues from way back. Openly, i have said, " O I am sorry you and your Dad have had a tough time in the past. You would be surprised how people can love and understand one another in a time like this." Once I privately talked to a young daughter that was causing havoc around her Dad's dying. Out of her own fear and grief she was drinking and decided to leave her husband..patterned high drama stuff forcing the family to resentfully refocus to her. I encouraged her to step up and get the blessings of being part of the process for her Dad. Her choice. She settled down long enough for her Dad to have a family surrounded peaceful death. I once had a liver pt straight from prison come home to Momma to die. He was big (ascites made him bigger) and a bully and angry. He thought a few pushes and slaps at Mom was okay dokay. ( No, not as confused as angry.) We talked. I told him he could do what he wanted the last two week of his life but whatever he did was the last he would be remembered. People would stand at his funeral and remember he beat his Momma and God would remember too. He caught on the two week part and cried and cried. "Two week! If that's all the time you think I have, I can be a good son for two weeks." And you know, he was.
8. 
   Feb 7, '07

   Occupation: Writer - on Dying Process Specialty: Med-Surg, ER, ICU, Hospice ; From: US ; Joined: Apr '05; Posts: 296; Likes: 136

   BeExcellen…
   
   Thanks for the late evening chuckle.
   
   How did the big guy from prison die? Pain free? Uncomfortable? Awake? Unconscious? Did he ever resolve anything? Did he hit an emotional wall? How did he go?
   
   Michael
9. 
   Feb 8, '07

   Joined: Jul '06; Posts: 99; Likes: 2

   Yes, families can be interesting. We have had several instances of severely abused children coming back when mom or dad was dying and care for them. I never get over being amazed at the generosity of spirit shown here. I have to confess.
   The weirdest one was a daughter whose father had sexually abused her, the whole family had turned against her, she had gone to another area, made a really good life for herself, and when her dad was confused, dying from cancer, she arranged al his care, even to the point of paying some of the other family members to care for him. she had set her boundaries just so, that was how she could get through it all. I always marveled at her strength.
   Another time we had a patient whose two daughters were soo abused. She had even locked them in the closet for long periods of time. They had the most awful time caring for her. Our problem was the doctor. she thought the daughters were "acting like babies". You sure could tell she was not a specialist in human behavior! We had to get our medical director to write orders to keep her in inpatient to die. We seldom do that, but it was apppropriate in this case. Unfortunately, this woman was very agitated as she died. It didn't matter what we did she fought. Very sad.
10. 
    Feb 8, '07

    Occupation: Writer - on Dying Process Specialty: Med-Surg, ER, ICU, Hospice ; From: US ; Joined: Apr '05; Posts: 296; Likes: 136

    River…
    
    I am not surprised the woman you describe was agitated.
    
    I may have mentioned this in another thread somewhere but I too had a patient who sexually abused his daughters. He was very pious and did not know I knew of his abusive history. I asked him once if he had any regrets. He said he had lived an exemplary life and had no regrets whatsoever. One of his abused daughters was sitting next to me at the time and quietly wept.
    
    As death drew near this man experienced physical discomfort which was controlled with medications, but he also had quite a bit of inexplicable anxiety… which was more difficult to manage. He never did acknowledge his past and died unconsciously.
    
    You may fool some of the people all of the time, and you might even fool all of the people some of the time, but you can never, ever fool your self… the self always knows. And it is the self with whom the dying come face to face.
    
    The daughters did their duty and helped with their father’s care all the way through, but it was hard for them. They did it, but they suffered.
    
    Michael
11. 
    Feb 8, '07

    Joined: Apr '00; Posts: 24,611; Likes: 35,453

    Quote from req_read

    He never did acknowledge his past and died unconsciously.
    
    Michael

    i'm not sure i agree with this, michael.
    his anxieties served as a catalyst for his consciousness.
    just because he didn't verbalize remorse, or openly share his woes, doesn't mean he didn't wrestle in his own private hell.
    
    anxiety, fear, agitation, depression are all forms of pain.
    even the abusive mother that river spoke of, she might have benefited from some blatant 1:1 earlier in the process.
    in the absence of anything pathologic, people on their death beds need to hear the truth.
    these truths can be positive, fluffy and beautiful and they can also be horrid and evil; as long as they are truths.
    
    so when i'm on my deathbed and a perceptive person tells me, "you spent way too much time alone during your life and as a result, you weren't available"...that will be a truth that stings and i may choose not to publicize my reaction but nevertheless, it doesn't make this truth any less plausible.
    i would certainly imagine this truth manifesting itself as anxiety, perhaps agitation, distance, depersonalization....who knows? but i do know, it will manifest itself in some way and so, that makes it conscious.
    
    we cannot will one's behaviors and responses to neatly fit into the text of a bestseller book.
    we can only observe that one person's reaction is not synonymous with anyone else's.
    and so we can always expect the unexpected-albeit ea response being as valid as the next one.
    consciousness catapults a myriad of ambiguous phenomena.
    ultimately, it's up to us, to find the door which leads to the much needed closure.
    
    leslie

    Last edit by leslie :-D on Feb 8, '07 : Reason: non-sensical statement after sig
12. 
    Feb 8, '07

    Joined: Jul '06; Posts: 99; Likes: 2

    Which leads me to a place I always wonder about. I have only had terrible problems managing symptoms a few times. Occasionally, in these cases, some light is shed by someone in the family on an unresolved issue. If the patient is able to resolve the issue (with help usually ), symptom management becomes easier. I remember two particular cases- both middle-aged folks. One was not speaking to his dad, the other had issues he felt were unresolvable. In the first case, the dad came around to talk when he found out his son was so ill; in the other case we held a healing ceremony so he could let go of the issues with intent that people he harmed would be healed. Both persons had far better symptom management after the events.
    
    But occasionally I wonder. What do other folks experience? Maybe we should make anxiety the 6th vital sign.
    Love reading everyone'sdiscussions.
13. 
    Feb 8, '07

    Joined: Apr '00; Posts: 24,611; Likes: 35,453

    that's a valid point, river.
    ever since i've worked hospice, i've always consciously (and i'm sure, unconsciously) used anxiety as the 6th vital;
    or whatever undesirable feeling the pt is experiencing.
    plus i loathe the dx of terminal agitation.
    if you look at it as a transient occurence, chances are it will indeed be transient (in the absence of pathological variances).
    how did your pt respond to the healing ceremony?
    i know you said that symptom mgmt was easier afterwards.
    but was he aware of the intent of this ceremony? he knew it was to heal those he felt he had wronged?
    now that's what i would call a good death-everyone is healed, returned to balance, 'normalized', 'stabilized'.
    but whenever i hear of a pt being profusely medicated for terminal agitation, i would give my right arm to be able to spend as much time with them as humanly possible.
    i'm that confident this agitation could be resolved.
    every person on this earth, has the right to leave here with boundless, positive energy and so, all loose ends must be neatly tied before their bodies die.
    an ideal?
    yes.
    but i don't know why, in this day and age, this couldn't be a reality.
    
    leslie

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