Managing symptoms for a "good death" - page 28

found at nursing 2006: november 2006 volume 36 number 11 pages 58 - 63 managing symptoms for a "good death" marylou kouch aprn, bc, msn contact hours: 2.5* expires: 11/30/2008... Read More

  1. by   zenman
    zenman,

    The reason I raised the question about whether dying people may or may not be "working" or "processing" while "unconscious" is because that is a question which arises often for hospice nurses. It is quite common for hospice nurses to be approached by desperate family members and queried in pleading tones as to what they think is going on. I have contemplated this question frequently myself while caring for pt/fams, and on a personal level while contemplating the deaths of some of my own family members. The question is not only valid and worthy of consideration, but haunting and speaks to what we ought to strive for in assisting others as they die... not to mention, what we might aspire to in our own deaths.
    How do you answer this question? Do you have to or need to? Can you answer from any "authority" position? Or do we just need to be present?

    You have posted a fair amount of intriguing info regarding your spiritual preferences, most of it very general (non-specific to hospice practice) while casting aspersions on some European religious beliefs in the process. Not that many European religious beliefs have not earned defamatory comments, but the general tone of your posts seems to come down to, "My religious beliefs are superior to your religious beliefs." And that is pretty much true for virtually all religious belief, among all practitioners throughout all time. After all, if people did not think their doctrines were superior they would find different ones (as you have apparently done yourself.)
    "Casting aspersions" might be kinda strong when I was only showing a comparison. Remember I have no religious beliefs. I walk a path of spiritual discipline and experience, not belief. Religions are based on beliefs. Any spiritual practice is based on your own personal experience which is why we have no organization such as a book (Bible) or leader. Shamanism asks you to look at our relationship to the earth. All religions came from shamanic practices as it is pre-religious. The reason I like shamanism is because I wanted to go back to the beginning of all healing practices. It's certainly not appropriate for everyone. It's my path; I won't talk you into it. If you want to know I'll tell you. After that, you decide.

    The point that I have labored to make throughout this thread (and in my other writings as well) has been that there is no single "best" doctrine... no one-size-fits all religion that works well for all alike.
    Which is why I think "being present" and offering your support might be appropriate for most dying people, especially since it is difficult to have knowledge of the many different religions. The chaplains, ministers, etc., can address specific patient/family questions according to individual beliefs.

    Is conscious death better in some way than unconscious death? If so, why or how? And if it is, what types of behaviors, practices or beliefs prior to one's own death seem to be more likely to yield conscious death? And if that is not attainable, what of unconscious death? Are people working and processing unresolved life issues while awaiting physical death unconsciously?

    That was the question posed. As I say, hospice nurses wonder about this often... not to mention, are pressed by family members, often hard, for answers. Somehow I don't think distraught family members would find a great deal of solace in, "I think something is going on until neural activity ceases and the brain shuts down."

    For hospice nurses dying is very, very practical. What actually works? What actually helps? When we are dying our hand has already been dealt, new cards may have been drawn and the unwanted ones thrown down. But it's a little late to begin studying a new religion at that point... you play what you were dealt and hope for the best. And if you happen to be the hospice nurse standing there with a whole bunch of very upset family members pleading for some sort of helpful response from you, what do you say?
    Back to "being present" and offering support since we don't know all the answers for each individual.
  2. by   req_read
    Leslie, as always, is much nicer than I.
    Like her however, I did read your (zenman) links and found them to be very interesting. Mishlove is a very good interviewer and his work is nearly always enlightening. As I have mentioned before, my brother is into shamanism and tells me about it quite a lot. He puts on “sweats” fairly often and has met quite a few very interesting characters over the years, some of whom are nationally known in shamanistic circles… although I am not much of a name dropper, since I can’t remember anyone’s name… or care to try.

    Regarding “religion”…
    I suppose that I define the term more broadly than most. I think of religion as being a set of tenets which one accepts on faith and uses to fill in the blanks of that which is unknown… which, by the way, is vastly larger than that which is known. In that sense, each and every one of us has his/her own personal “religion,” or way of covering up the immeasurably enormous chasm of that which we do not know. Comparing what any one of us does not know to that which we do know would be something akin to comparing all the oceans of the world to a single teardrop… there simply is no comparison. Teensy tiny little “man” must have some way, some method or technique, for obscuring his own immeasurably vast ignorance from himself, lest he simply throw in the towel and give up. If we really understood how little we actually know we would shrivel up like a small piece of Seran wrap being hit with a giant blowtorch. To prevent this we have things like ego, and of course, religion. So in that sense, we all have a “religion,” just as we all have an ego. We cannot “not have” a religion. We could deny having one, but we have one just the same. The question is not how do we get rid of our religion, but rather that we become as aware of it as possible so as to use it more effectively… more consciously.

    Some adopt a “prefab” type of religion… one with whose construction they had little or no input. I suppose this is done out of a combination of laziness and a desire to “fit in” with some group or other. The problem with this approach is that when it comes time to die a religion that is not personalized does not work very well… does not afford much comfort in the proverbial end. Watching people die demonstrates the wisdom of meticulously constructing one’s own, personal religion… it simply works better. This definition of “religion” is also useful in illustrating how nutty it is to proselytize. Meticulously hand crafting a garment to fit you and only you, then trying to put it on someone else is a fool’s errand.

    I am appalled and aghast when I hear someone say, for example, I “am” Lutheran (or Baptist or Muslim or whatever.) How is that possible? The concept is simply nuts. I “am” a human being, no more and no less. Or what is really strange is when someone says something like, “I used to be a Mormon, but I didn’t like that so I became a Methodist.” Huh? That’s like saying, “I used to be a potato but that was sort of tedious so I turned into a pumpkin.” I just can’t follow that line of reasoning and tend to agree with Chief Dan George when he said in the movie, Little Big Man, “I am a member of the human beings.” How I explain the unknown (my personal religion) is a coping mechanism which I have constructed, but it is not who I “am.”

    Regarding not knowing what to say to distraught family members…
    Part of the art (as opposed to the science) of nursing is the ability to say something comforting at key moments. I have never been very good at that. Perhaps it has something to do with being male, I don’t know... but I would bet a lot of money that if Leslie (for example) were standing next to me when a family member of mine died and I asked a question that had no known answer she would say something comforting. I have no idea what it might be, but I have absolutely no doubt she would say something that would make me feel better. That is an art… which has no definition, other than you know it when you see it. So raising the question, “What would you say?” is rather rhetorical; i.e. intended to stimulate thought, but at the same time realizing there is no right or wrong answer, although there are answers that would probably work better than others. And you are quite correct in assuming that if you cannot think of an answer at all it would probably be better to keep your mouth shut and just “be there.” That is a technique I have used very often myself and is a manifestation of the medical practitioner’s pledge to not make things worse. Still, raising the question, rhetorical as it may be, is food for thought. Lots of newbies come onto this website and ask what it would be like to be a hospice nurse and one of the answers to that question is another question; i.e. “How good are you at answering the unanswerable?”

    My way of dealing with that question (perhaps a male approach?) is to dig and dig and search and explore and read and think and write and try to work it all out ahead of time. The problem with that approach, when dealing with the dying, is that “answers” that took years to work out cannot be gifted to a dying person in a matter of moments. Like you (zenman) said to Allow Mystery (paraphrasing), “Read the book.” Well, dying people don’t have time to read the book… and therein lies the crux of the biscuit for hospice nurses. My approach is to try luring people into “reading the book” before they are actively dying. For most (not all, but most) practical reasons, when you are dying it is too late. If you haven’t “read the book” by then, it ain’t gonna get read.

    I strongly encourage you (zenman) to keep putting out bits and pieces of shamanistic thought. It is an extremely interesting concept and highly thought provoking. It can be yet another lure… another temptation… encouraging people to do that which they are loathe to do; i.e. to “read the book” (metaphorically speaking) before they are actively dying… when it’s too late. Don’t mind me… I just get a little grumpy at times. Keep up the good work.

    Maybe next time I’ll share one of my brother’s stories.

    Michael
  3. by   leslie :-D
    all my life, i have been referred to as a wandering soul, an airhead, 'out there', a bunch of references denoting my lack of presence amongst man.
    of course this does not happen when i am 1:1, but in a group of people, i tend to float.

    when zenman talks about "being present" for our pts, that is truly a powerful intervention.
    especially with the dying, they sense our presence...physical being the least remarkable.
    when it comes to afterlife, none of us has answers.
    yet it is our spirits that comfort.
    i have said before and will repeat my beliefs, that words do not elicit specific responses, rather, the conviction in which they're expressed.
    there are many ways to communicate.
    i can tell my pts that all will be ok, but if i am not expressing said sentiments with earnest, my words will be meaningless.
    if we all focused on being, i do believe our fellowship would be more consequential.
    but few people truly get that concept of being.

    i am such a polar opposite of you, michael.
    meaning, i would drive myself nutty by asking questions and searching the earth (and beyond) for answers.
    when i think too much, it interferes w/my being.
    but i will say, i've always felt that i am a restless spirit trapped in a human body.
    my point, being with my pts as they transition, is very natural and comfortable for me.
    i even am comfortable with all those family dynamics, protesting and cursing death, and of course, cursing me.
    heh.
    it's all good.
    it's really, all good.

    leslie
  4. by   req_read
    Leslie…

    Polar opposites? I’m not so sure. We do view language differently, and use it differently. But maybe not quite so differently as it may sometimes seem.

    I said here once that all language is metaphor. One can eat an apple, but not the letters a-p-p-l-e. Or if you did eat the letters they would taste more like paper & ink than fruit. The letters represent the fruit but are not the fruit. But take that a step further. The Jacqui Indian Man of Knowledge, Don Juan, declared that an apple is an apple because we (humans) agree that it is an apple. In other words, physical reality is sort of a shared dream. When we go to sleep we dream individual dreams, but when we wake up we step back into this shared dream… the one where things are what they are because we have reached some agreement on what they are. We call that “reality,” or the “real world.” The things that create or generate our so-called “real world” are intention, imagination and expectation. Those are what is really real… the physical world is but a manifestation of those, more “real” things. A rock is a rock because we expect, imagine and intend a rock to be a rock. Without the intent, the imagination and the expectation a rock would not exist at all. Shamans (among others) have discovered the truth behind the words, “All the world is a stage.” Or one could say, all the world is an illusion… a dream… and this one is a shared dream… a joint project. So shamans (and others) have learned how to go backstage… behind the scenes… where the real power lies… the intent, imagination and expectation. These things can be manipulated backstage and thus, the play (onstage) is altered.

    But words… metaphors… can be used to manipulate intent, imagination and expectation too.

    You deal directly with dying people and use (apparently) a lot of pure intention… wordless intention, expectation & imagination… thereby altering the dying person’s play, so as to render it less traumatic. I perform a similar function but try to do it ahead of time, and my preferred tools are words. In some ways we are rather like the allegorical blind men, standing at opposite ends of an elephant, describing what we feel… which is entirely different of course, but it is still the same elephant.

    “Being present” can be described from opposite ends. One end is to describe it in humorously self-deprecating terms, another would be to describe it in altruistic or warm & fuzzy terms. But it’s still the same elephant.

    We all expect fire to be hot… and most of the time it is. But we do know that under certain circumstances a person can walk on a bed of red hot coals and not be burned. How? By altering one’s expectations. It is easier said than done of course… but it can be done.

    Similarly, how we experience death is largely a product of what we imagine, expect and intend regarding death… and I discovered while working with the dying that the way we experience death is pretty ugly at times. So how can that be changed? By altering our expectations, imaginings and intentions. And how can that be done? Well, there are different ways of accomplishing that. One is your way… to be there, working directly. Another is to apply word metaphors ahead of time, attempting to alter the actor’s expectations before the play even starts.

    The beauty of our shared dream/reality (the physical realm) is also its greatest weakness; i.e. it has the quality of being… or at least seeming to be… concrete. It changes… but slowly. That gives us time to agree… to compare notes… on what is real. We pick up a rock and we imagine it is hard. We boink someone on the head with it and he says, “Ouch,” and we ask, “Doesn’t that seem hard to you,” and he replies, “Yes, as a matter of fact it does.” Then we go away but come back later and the rock is still there… and still hard. So we reach agreement on the nature of “rock” in our shared dream, whereas when we go to sleep we dream individual dreams where we can be talking to someone and he changes into someone else in mid sentence. Or a rock might turn into a bird and fly away… which all seems perfectly normal at the time, but a little odd when we awake and think back on it. Sometimes we sort of drift back and forth between our individual dream and our shared dream… what some call “lucid dreaming…” and may become aware of which dream we are in (waking dream versus sleeping dream) and we realize we can change our individual dream (sleeping dream) at will, while the shared dream (waking dream) is harder to alter… because it has more concrete-ness. Sometimes, while in a lucid dream, I realize I am asleep and think, “Great! Now I can do whatever I want.” So I start to fly. I love flying!

    We have less freedom here (in the shared, waking, more concrete dream) because it is harder to alter… but on the other hand, it is more stable. I can’t fly here, but the rocks don’t turn into birds… which can be sort of mind-boggling. The physical realm can be changed, but it is harder to do. One has to go backstage and manipulate the powers behind it… but that is an imprecise science and doesn’t always turn out the way we planned.

    We say that God is a “creator.” But we are his apprentices. We are apprentice creators. You could say that the purpose of life (here on earth) is to learn how to create stuff. Only we aren’t so good at it yet… sort of clumsy really… rather like Mickey Mouse in Fantasia.

    You (Leslie) seem very comfortable with what might be called “free flight” dreaming… and a little claustrophobic about this shared, rather concrete dream we call “the real world.” That really goes a long way towards explaining why dying people are so comfortable with you. They are about to leave this shared, concrete dream and enter into a more open, amorphous, ethereal dream. That is frightening… rather like zenman’s being adrift on the open sea. But you are comfortable with that. Indeed, you even seem to prefer it. It scares the bejeebers out of most folks, so your comfort level would naturally help to sooth them… help to alter their expectations etc. Have you ever thought of telling them, “Hey… it ain’t so bad. At least you can fly, and flying is lots of fun!”

    I try to alter those same folk’s expectations before they ever get to you… sort of set the stage… so as to make your job easier. Now, I confess that I am not making that happen with anything approaching warp speed. After all, this realm is pretty concrete. But I’m working on it… be patient.

    It is good to hear from you again, and I do hope you are having a lovely holiday season.

    Michael
  5. by   leslie :-D
    i do struggle with the physical realm, michael.
    w/o a doubt.
    but i maintain that my reality is just that, as is everyone else's reality.
    it doesn't matter if one is schizophrenic, devout Christian or atheist, 5 yrs old or 90...
    every person's perceptions are as valid as another's.
    and yes, there are always those shared perceptions...
    but my reality is my truth.

    as for my pts, i do encourage them to get in touch with their spiritual sides...
    by having them recall certain, unique and magical experiences in their life...
    reminding them that ea event was their spirit awakened.
    once they can identify that "aha" moment, then they tend to relate to it in its context to transitioning.
    many pts will share extremely profound, insightful sentiments to and about me.
    again, i remind them that is their spirit.
    once they can embrace this concept, then dying doesn't seem as frightening.
    but that is the beauty of working inpatient.
    i have plenty of time to nurture these relationships.

    it's funny, even when i post in general nsg discussion, i have stated that dying in its natural state, is a beautiful, peaceful process.
    either i get no response or a "what the hell are you talking about?"
    when posters offer support to someone who they've lost, i'll be the one to post, "it's all good, trust me, it's all good".:chuckle

    i'm sure most people think i am totally nuts.
    maybe i am, but not when it comes to dying.
    i know what i speak of, what i see, hear, smell, sense...
    that is my truth, and i'm sticking to it.

    leslie
  6. by   req_read
    Leslie…

    Thank you for clarifying. I’ll admit that some of your statements along those lines have left me scratching my head… wondering. But even when perplexed I’ve learned that your thoughts & opinions bear weight and merit reflection. I may be a little too thick to sort it all out right away, but I’ll hang onto it.

    Your technique of reminding people of the magical moments in their lives is, I believe, brilliant. I think most people have had such moments… when they have broken through the veil of the 5 mundane senses, often spontaneously or unexpectedly, and caught some telltale glimpse into what lies beyond. A variety of such moments in my own life have, to a large degree, convinced me there is more to “life” than this brief earthly experience.

    Unfortunately, in our rather materialistically oriented society, people are sometimes reluctant to hang onto those flashes of enlightenment, or even to acknowledge them as real or valid, for fear they might be thought of as nuts, superstitious, half a bubble off level, one taco short of a combination plate… whatever. So I think it worthwhile to encourage people to think of those moments in positive terms, to hang onto them. They may come in very handy someday. And really, despite the influence of our materialistic society, I have found that very often, family members of dying people will reveal personal experiences that they normally do not talk about. It is as if the intensity of the moment (someone close dying) combined with an open minded nurse can give them permission to talk about closely guarded flashes of insight… their personal, magical moments.

    Michael
  7. by   leslie :-D
    Quote from req_read
    Unfortunately, in our rather materialistically oriented society, people are sometimes reluctant to hang onto those flashes of enlightenment, or even to acknowledge them as real or valid, for fear they might be thought of as nuts, superstitious, half a bubble off level, one taco short of a combination plate… whatever. So I think it worthwhile to encourage people to think of those moments in positive terms, to hang onto them. They may come in very handy someday. And really, despite the influence of our materialistic society, I have found that very often, family members of dying people will reveal personal experiences that they normally do not talk about. It is as if the intensity of the moment (someone close dying) combined with an open minded nurse can give them permission to talk about closely guarded flashes of insight… their personal, magical moments.

    Michael
    well, that's just it, michael.
    when someone hears that others too, have experienced those magical enlightments, they are also learning they aren't the only ones.
    that, they are not crazy or totally out there.
    it's very validating...
    which only serves to authenticate one's experience(s).
    in turn, this "nah, it couldn't be..." turns into a "well, just maybe..." and hope, faith are restored.
    and yes, conversations from all involved in the dying experience, are often truly profound and spiritually humanizing.
    that's why i do not require testimony to my experiences.
    that is why i don't feel the need to delve into the intracacies...
    while many elements in dying are intangible, they are also some of the most palpable events i've yet to experience.
    its impact has sustained me for this lifetime.
    and whatever i do not know (which is practically everything), my faith is buoyant.
    whenever i get there is fine.
    i'm in no hurry nor am i behind.
    i am exactly where i need to be at this moment.
    (but i will not start expounding on my perspective of time and timelessness)
    so perhaps my intellectual capacity is blunted.
    actually, i am quite sure it is.
    but i'm ok with that, for i am grateful for what i do have.
    we are all gifted in some capacity.
    let us celebrate that, rather than become submerged in what we know not.

    leslie
  8. by   req_read
    Well, I’m coming down with a x-mas URI so will probably be in for it for a few days. Still, I thought it might be useful to illustrate how a so-called magical moment might be shrouded in doubt and thus, dismissed.

    About 3 years ago a friend and I hiked back into a mountain canyon to camp & fish for a few days. The hike, wearing a 50 lb backpack, was arduous to say the least… especially for someone my age. For awhile I wasn’t sure I would make it at all, but eventually did. Once getting back into a place like that however it becomes abundantly apparent that you won’t be diddy-bopping back to the truck in case you forgot something… you’ll do without.

    Cutting right to the chase…
    On the 2nd day I was fishing with my little ultra-light rod & reel when, as usual, my line became terribly snagged. To get it all straightened out I had to disassemble the reel and dropped the small spool retention spool into some tall grass. Now this, I realized instantly, was problematic… especially for someone who is legally blind. I stayed calm and determined to mount a methodical, anthropological dig type of search… square inch by square inch, being careful to disturb the area as little as possible… which I did… for about an hour. Then frustration set it. Here I had nearly killed myself hiking into this area to fish for mountain trout over a high pass, endangering my life clinging to a vague path in a detritus field over a steep drop-off only to drop a critical piece of equipment at my feet and not be able to find it again. In a fit of anger I decided, “To h___ with the methodical approach, I’ll tear the whole danged area apart!” Which I did… for about another hour. Still, no retention screw. And this was all occurring in an area of ground about 3 feet square. Finally, in a state of mind with which you may be familiar; i.e. complete and utter resignation-frustration-hopelessness I turned my face upwards and begged my unseen friends for assistance. Then I wept for several minutes, nearly at a point of collapse. Finally, pulling myself together, I returned to the little 3 foot square area and looked down. There, sitting precariously atop a stick, was the elusive retention screw. Not only was it at the very center of my search area, it was precariously perched atop a stick. Had it been there for the last 2 hours I would have either seen it or knocked it off a hundred times over. My conclusion was unavoidable; i.e. my unseen friends placed it there in response to my request.

    One of the reasons people go to such out of the way places is to be alone. One of the inescapable sensations of being in the physical realm, firmly ensconced within a body, is a sometimes overpowering sense of alone-ness. And one of the life circumstances that accentuates that feeling of alone-ness is when things don’t go the way we want and frustration sets in. In the scene described all of these things came together in a perfect storm of alone-ness. Then I asked my spirit guides for assistance and voila! The overpowering and unutterably profound realization that I am not alone… I am NEVER alone… washed over me like a tsunami.

    Well, I won’t go into all the details about how that felt… but there is a caveat.

    Later, my intellect began to reassert itself. The intellect… or at least mine… really hates to be slighted, ignored or overlooked. Little by little it tried to get my attention. “Ps-s-s-s-t! Hey Michael. Now let’s get a little real here. This childish magical thinking bull has gone about far enough don’t you think? I mean come on! Some spirit placed a screw on a stick? Grow up boy!”

    So you see, acknowledging a magical moment may not be so easy. You may find yourself in a wrestling match with your own intellect. If you want to hang onto your magical moment you may have to simply order your intellect to shut the heck up and go sit in the corner. “This is my magical moment and you can’t take it away! Got that?!? Now beat it!!!”

    How many magical moments are stolen from us by our intellect? Quite a few I should think.

    Now Leslie, you have said from time to time that your intellect is less than gargantuan. Well, that isn’t all bad. Sometimes a big intellect is just a big bully… the guardian at the gate trying to prevent you from getting through. And for those of you who do have big intellects, don’t dislocate your shoulder patting yourself on the back. Much of self-awareness boils down to being aware of what you’re up against, and what we are up against is usually our self. Very often what we consider to be our greatest strength is also our greatest weakness and requires careful monitoring.

    Happy Holidays.

    Michael
  9. by   leslie :-D
    [[b]quote=req_read;3310278]how many magical moments are stolen from us by our intellect? quite a few i should think.

    you say that because you rely on your intellect.
    me, not so much, lol.
    and so, there is very little my 'intellect' interferes with.


    very often what we consider to be our greatest strength is also our greatest weakness and requires careful monitoring.

    and, our greatest defense mechanism...
    which leaves us protected from a lot of incoming phenomena.


    happy holidays.

    michael[/quote]

    and to you, michael.
    be, stay well my friend.

    leslie
  10. by   grbrico
    We use atropine gtts for emergencies and keep those in a comfort box. But Scop patches work even better. We use the Atropine gtts (typically opthalmic gtts) under the tounge... 2 gtts every 4 hours as needed. We get the scop patches as soon as we can... 1-3 patches every 72 hours.
  11. by   powerflash
    I'd like to have nurses talk about atropine, I've given more then ordered at the last hours.( It does help) WHAT ARE YOUR FEELINGS ABOUT THIS?
  12. by   leslie :-D
    Quote from powerflash
    I'd like to have nurses talk about atropine, I've given more then ordered at the last hours.( It does help) WHAT ARE YOUR FEELINGS ABOUT THIS?
    let's face it:
    the dosages a/o, are inadequate.
    you do what you need to do, to get symptoms under control.

    leslie
  13. by   tewdles
    I agree that the atropine dosage is inadequate when a patient is having an acute crisis with pulmonary congestion. In those instances I consider injectable scop to get a quick handle on it and then try to maintain with Atropine or levsin or the TD Scop. There certainly is benefit in the CHF patient (and many others) transitioning toward death in a slightly dehydrated state, the natural process usually takes care of this but there are some poor folks who come to us dying and wet. If you can plan for that transition it helps everybody involved. Remember to stress good mouth care to the caregivers when using these meds. Dry mucous membranes are a miserable side effect.
    As clinicians we have to be cautious about these meds outside of the terminal phase. I did a PRN visit one night for a youngish woman with lung Ca using TD Scop for routine symptom management, she got a bit dry and developed mucous plugs with some significant atelectasis. She didn't want to go to the ER so I stayed with her and accomplished quite a bit of pulmonary toilet and got her comfortable again. (thank the LORD for my NICU/PICU days)

    About the "good death" part. As a hospice nurse I define it differently than the patient or the family might. Not because my goals are different from theirs but because I have goals in addition to theirs. So for me, a "good death" is what ever the family and patient say it is plus all of the comfort and peace I can provide them in my role as case nurse.

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