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Innovative Ways to Help Both Family & Patient
Great! Best Wishes. Michael
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Innovative Ways to Help Both Family & Patient
Hi Judy, My curiosity was piqued by your statement…”I provide "Continuous Care" through an agency…” The implication being that your agency anticipates pt/fam need or desire for Continuous, In-Home care. And, having set up a mechanism, or “team” if you will, for addressing that need, the agency is then in a position where it would be in their financial interest to seek out, or dare I say, “create” such a need. It is rather like the construction company that invests in a machine, say for example, a large backhoe. Once they have it they are motivated to find jobs where they can use it… as in, make money with it. Continuous In-Home care is the highest paid category of hospice per diem reimbursement… considerably higher than Routine In-Home care. Therefore, finding “need” for its use becomes a real temptation. So Judy, might it be that perhaps some of your clients are not all that interested in Continuous In-Home care in the first place? Might some of them have been, shall we say, nudged in that direction? Which would then render them less-than-thrilled at the idea of having “strangers” living with them, elbow to elbow? Of course as time goes on and the pt gets closer to death, with the usual concomitant exhaustion of the family, the “need” becomes more truly theirs (as opposed to the agency’s need to keep their Continuous In-Home care machine in operation.) Just one more side comment… Some people (such as myself for instance) are more jealous of their privacy than others. I can only tolerate outsiders in my home for brief periods, regardless of how cheerful or helpful they may be. I require “alone time,” and when deprived of its rejuvenating qualities I confess to morphing into a curmudgeon rather quickly. Pardon my verbosity. This somewhat lengthy post is just the full-length version of Tewdles’s comment, “In my neck of the woods families who do not want continuous care do not get continuous care... Welcome to the politics of Hospice. I predict, Judy, that if your agency has gotten itself into the position of pushing Continuous In-Home care, it will be fairly common for your pt/fams to display some resentment towards your presence, especially in the initial stages of that care; i.e. before the pt/fam’s “need” ripens to maturity… or perhaps I should say, ripens into desperation. The question for you then becomes: How can I be in-home before I am truly needed without wearing out my welcome… so that when I am truly needed there is not an over-abundant accumulation of resentment to contend with… on top of everything else? And the question for your agency is: How to walk this thin and somewhat dubious line without bringing down the wrath of governmental, 3rd party payors? Best Regards, Michael
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Managing symptoms for a "good death"
Hi Leslie… Referring back to page 36, Post # 353 of this thread… I’ve been thinking about this, for a year and a half or so (referring to your comment, “it's all good. it's really, all good.”) It’s making more sense to me now, I think, but has left me wondering what your response might be to a question. Now first let me say, I would not ask most people this question… but you, I would… because your answer, should you choose to give one, would be felt as opposed to learned. Nor do I think you would be cowed by the question… although I realize that posting it here might be a horse of a different color. Anyway, the relevance of the following question to a thread addressing “good death” is core, so here it is: What is the purpose of life? (Meaning “life” in the rather limited sense of a temporary earthly experience.) Or the question might be stated thusly: What are we doing here? What did we come here for? What is the point? What is there to gain? Why go to all this trouble? Warmly, Michael
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Managing symptoms for a "good death"
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
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Managing symptoms for a "good death"
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
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Managing symptoms for a "good death"
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
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Managing symptoms for a "good death"
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
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Managing symptoms for a "good death"
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. 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.) 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. All people are connected, not only to each other but to all living things (which includes rocks & grass and our Earth Mother etc.)… yes, quite so… but at the same time every person is utterly unique. I am the one and only me that ever has been or ever shall be… and the same goes for you. Therefore, it would only seem logical that my spiritual views… my personal religion if you will… is just as unique as I. I am the only person who has or ever will have my personal spiritual perspective, perhaps largely because it has resulted from my own personal spiritual experiences and the feelings thus engendered. I pick and choose the rituals I perform, the beliefs I hold, the expectations I have for myself and for my place in the universe. They are a combination of European, Eastern, Western, Native and Ancient religious thought… with a healthy dose of superstition thrown in for good measure… plus a smidgeon of guesswork and plain old-fashioned bias. I do not proselytize my personal religion because it is mine and mine alone. Get your own, but keep your hands off mine! It is perfectly fine to compare beliefs, doctrines etc… as well we ought… but ultimately every individual must create his/her own personal religion… and hopefully, every person’s utterly unique religion would be based largely on what actually works. And therein lies the beauty of practicing hospice. When watching people die we are given the opportunity to see what actually works. Of course we are seeing it in others, but the information gleaned can often be extrapolated to one’s own unique set of circumstances. Indeed there is a wide range of nuance, but there are generalizations that can be drawn as well. For example, how do the deaths of those who actively seek answers for life’s essential quandaries while being respectful of their fellow humans compare with the death of say someone who practiced a get-everything-I-can-regardless-of-how-hurtful. Would the death’s of these two very different individuals be as different as they were in life? And if they did tend to differ, in what ways? 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? As for eliminating or “dying to” ego and fear, that is a whole other set of issues. These are two of the most ubiquitous “usual suspects” when it comes to assigning blame for human suffering, and they usually receive pretty poor press. Religious zealots are wont to claim they have conquered both… but I cannot help but wonder. Upon reflection, we were given both… and one cannot help but ponder whether Divine Intent (by whatever name) must have felt they served some purpose… as obscure as that may appear from our current vantage point. After all, your vision of being lashed to a mast in a raging sea would hold little romance or drama if not for the presence of some fear and ego. Michael
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Managing symptoms for a "good death"
zenman… Interesting. So what do you think? When dying people are “unconscious,” are they working? Are they processing? Is it situational? Michael
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Managing symptoms for a "good death"
Jodi, Very well thought out and written post I must say. I believe it reflects a fundamental difference in our current views; i.e. you are currently working in hospice and I am not. While I think and write about dying you deal with it, hands on, every day. As a consequence, my posts tend to be more “theoretical” while yours seem more “clinical.” I believe they are complimentary however. As regards one of your several, well-made points I reference a few lines from a song by Kieran Kane & Kevin Welch. “Old dirty dog walking down the street, no shadow did he cast. Clock on the wall, no hands at all, no present, no future, no past. You can’t save everybody, no word, no deed, no praise. You can’t save everybody, everybody don’t want to be saved.” As you suggest, getting “involved” is both time consuming and terribly draining. If all your pt/fams were actively working on their issues you could probably only handle a case load of about 3… which explains why management would rather you had no such involvements at all. Regarding hospice nurses & spiritual work… quite so, quite so… that is what it often is… or at least can be if the nurse is so inclined. And I would further suggest that it is often the nurse more than the SW or Chaplain for 2 reasons… one of which is largely logistical and the other is merely a potential. The logistical factor is that the nurse is there (more than the SW or Chaplain.) Simply being present is a huge factor, because the pt/fam is not always willing to talk… spill their guts. That is often something that just sort of happens out of the blue. It is a cubic centimeter of chance. Think about yourself. Do you just decide you want to have a heart-to-heart talk and then jump on the first person who happens through your door? No. It is one of those “when the moment is right” sort of things. And even when it does start to happen… when you feel an overpowering urge to “let it all hang out”… you might also have a feeling of foreboding… like, “Oh God! I don’t really want to do this… but here I go anyway.” So it is the one who is there the most… who is the most familiar… that is most likely to be the recipient of the pt/fam’s shared, innermost thoughts & feelings. Then there is the factor that is merely a potential… that might possibly draw the pt/fam out. This factor is far more ethereal, yet I believe it is very real just the same. It is the “birds of a feather” aspect. Like-minded people tend to recognize or sense their like-mindedness in one another. When you walk into a room full of people do you notice being drawn to those with whom you share certain thoughts & opinions? People with whom you feel more at your ease? Are you not more inclined to speak openly with those folks than with others who may have traveled in different circles and hold differing views? For example; I have spent a lot of time in the west where hot chile, cowboy hats, course clothing, course language and carrying guns is normal. Now I rub shoulders with a lot of retired executives and business people who dress very nicely, frown on cussing, would choke on a good Hatch chile and play a lot of golf, (which strikes me as one of the more bizarre forms of entertainment ever conceived.) My father-in-law loaned me a jacket for Thanksgiving dinner (I don’t own one) and as far as I am concerned, golf balls would make good targets for hip-shooting with a Colt revolver, but little else. These people leave me feeling like a stranger in a strange land. Dying people find themselves in a similar quandary. Dying process forces them (us) to look more honestly at our self… which leaves us feeling more like strangers in a strange land. As this process plays out we are more attracted to those in the room who we can sense have had similar experiences. We would naturally feel safer with that kind of person, and would likewise be more likely to open up to that kind of person. For those nurses who might think, “Gee, I wish my pt/fams would open up to me more… perhaps tell me about their innermost thoughts & feelings, or maybe even about their “near death awareness” types of experiences… I would suggest that the best way to nurture that possibility would be to work on your self. It may seem a little counterintuitive that working on one’s self might encourage more openness from others… but that starts getting into the whole issue of the connection between ‘I’ and all of humanity (we are all connected.) However, if one begins fostering the habit of looking honestly at one’s self, pt/fams will sense that and feel safer spilling their guts. In school they teach what phrases to state or what leading questions to ask, but it is not so much a question of how to manipulate someone into opening up. Rather, it is more a question of how to render one’s self less threatening… so that the pt/fam will open spontaneously (as opposed to being manipulated or tricked into opening up via the employment of some clever ruse.) To whom would you be more inclined to open up… someone with a name tag that says, “You can speak to me,” or someone in whose face you can see and sense evidence of their having felt the pain of self-awareness. When a person works on self-awareness… learns to see their self more clearly and honestly… they simultaneously become more adept at seeing others more clearly and honestly. In other words, to gain skill at seeing through your mask I must first work at seeing through my own. The better I get at seeing me, the better I get at seeing you. Being around dying people can be sort of spooky in that regard, for they are being forced to see themselves more clearly… which means they may well be able to see right through you too. Keep in mind that all of these things are merely trends. The dying TEND to become more self-aware, but from individual to individual that tendency may vary from “quite a lot” to “not at all.” On the whole we are inclined to become RELATIVELY more self-aware while dying, but if one had virtually no self-awareness to begin with any progress made in this area might be virtually undetectable… or it might be striking, depending on the individual. In a peculiar sort of way, this provides yet another clue that life must surely go on (after death.) It suggests that even if we do not make much progress in our personal growth here in this lifetime, we will still have time and opportunity to keep working on our self after death. It is only a clue… something implied by the prevailing circumstances within our limited purview… yet it is compelling. If, after all, the average person’s success in achieving truly laudable levels of personal growth in a single lifetime were the measure of human achievement, humanity might well be viewed as one of the universe’s more spectacular failures. This alone is highly suggestive of further opportunity for redemption; i.e. that death does not end life. Or, to put it another way, “You ain’t gettin’ outa here that easy Pal. Everywhere you go, there you are, so you might as well start getting acquainted… with your self that is. You can do it here or you can do it somewhere else, but do it you will… and the quicker the faster aye?” Now, changing directions just a bit, I shall again raise the haunting question: When dying people are “unconscious,” are they working? Are they processing? Is it situational? Of all people, hospice nurses must have opinions on this issue. Michael
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Recommended Reading for Hospice Nurses
Natalie, Pardon the sluggish response. No, I have not read it… I cannot read. I am probably one of the few illiterate writers you will ever know. Actually I can read, but only with special equipment, so it’s always a hassle. I get books from the library for the blind but there are lots of books which have never been recorded. However, my wife reads a lot, and some of her favorite authors are Buddhists. She tells me about their perspectives and reads selected passages to me occasionally. I agree with you… Eastern philosophy is, in many ways, very highly evolved and sophisticated. My brother is into Native American shamanism. He suggests books to me as well, but as is so often the case, they aren’t available in audio format… so I get him to tell me all about them. Our phone conversations sometimes run 2-3 hours. Let me tell ya, there’s some pretty fascinating stuff out there to read and think about… if you’re into that sort of thing and have the time to do it. Contrasting & comparing a broad range of spiritual perspectives is, I believe, more productive than glomming onto a single perspective and declaring that to be the one be-all and end-all perspective. Looking at a thing from a variety of angles reveals more about it than just looking at it from a single angle… which is why an ECG has 12 leads, not just one. Actually, the guy who invented the 12 lead ECG forgot to include a posterior view… it really ought to be amended to at least 13 leads. And now of course, to round out one’s spiritual studies, some quantum physics really ought to be folded into the recipe. Michael
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Managing symptoms for a "good death"
It is said that all things are relative. Studying dying process does not make one’s dying easy, just relatively easier. However, it seems that humans have a talent for making things harder. Having a baby, for example, is difficult enough, but if one chose to have a baby while riding in the back of a buckboard wagon it would be even more difficult. Similarly, dying is intrinsically difficult under the best of circumstances. The challenge then is to not make matters worse. To avoid making matters worse it would be useful to identify what makes dying difficult in the first place… to categorize the tough spots. First of all there are noxious symptoms; e.g. pain, nausea etc. For that we have symptom control. Then there is loss. We lose our friends, our family, our surroundings… virtually all things familiar. For that there is no cure, other than perhaps the suggestion or possibility that one might still be able to see or visit (after death) the earthly realm in a ghostly state. Then of course there is the loss of one’s body. Even if we realize we are not a body, we still become attached to (pardon the pun) our personal body and losing it, to one degree or another, is a loss. For this there is no fix. It’s a goner. There is the loss of our Earth Mother and all her magnificent wonders. Despite her faults she is beautiful after all, and much to be missed. Loss might also be categorized as “change.” Change is inevitable. The only certainty is change… which translates into loss. So we must learn to accept change/loss. This is made somewhat easier by consoling ourselves that consciousness always becomes more. No matter how cool you think this is, stick around, it gets better. Never-the-less, we look back and feel twinges of loss. The resolutional work of dying is perhaps the biggest hurdle to get over, especially in terms of sheer volume. Given our human tendency to side-step, procrastinate or flat out deny our unresolved issues, we tend to arrive at our dying process with huge quantities of unfinished work. This could be ameliorated, obviously, by doing our work as we go through life, but alas, we tend to save things up for the proverbial end. Whether this work gets done while a person “sleeps” in some form of unconscious state (coma… drug induced or otherwise) before dying is open to question. Whether there is something going on there while “unconscious” or “in a coma” is unclear. Your guess is as good as mine. I know perfectly well that my father had tons of unfinished business in his life, but whether he was resolving it while lying unconscious for days prior to his death is, to me, a mystery. I prefer to think that he was resolving at least some of his issues… but I do not know. I hope so… which is a way of making myself feel better about it… but that is about the best I can do. On the other hand, I do know this… those who keep their issues current as they progress through life are far more likely to die consciously… with more awareness, ease and in a timely manner… which to me, translates more readily into “good death” then lying unconscious for extended periods. Consciousness can be a difficult cross to bear. To paraphrase a quote from The Great Gatsby, “His was a great sin who invented consciousness. Let us lose it for a little while.” We do that in our work-a-day lives, (lose it for a little while) by some subterfuge or another, so as to escape, if only briefly, from the crushing weight of our consciousness. So we must ponder whether the unconsciousness that precedes the deaths of so many people is a form of escape? Or are they working? We can only guess… knowing there may not be one overarching answer. All things considered however, I believe it would be safe to assume that those who die… cross over… move on… however you care to state it… consciously are better prepared for what lies beyond than those who do not. Dying process forces us to look honestly at our self, and if one’s life has been lived so that one cannot bear to look at one’s self… oy! I don’t think that’s so “good.” So when in a coma is there resolutional work being done? I really don’t know. It may just be a case of going to sleep, hoping that things will look better upon awakening. Or it may be a case of going to sleep convinced that things look so bad that with a little luck I won’t ever wake up at all. I don’t know. But I am very hesitant to label unconsciousness as “good.” And finally we have the fear of non-existence… core existential fear. While we cannot know for certain whether we will survive death… until after we die of course… we can still look at the trajectory of life/death and judge where it seems to be heading. To quote Samuel Butler once again, “Life is the art of drawing sufficient conclusions from insufficient premises.” When we study dying process closely we see very clearly that it is a learning process… which is a key clue. Why would dying process go to such great lengths to teach us something just so we could cease to exist? To quote Spock, “That is irrational Captain.” The only rational conclusion is that life goes on… as consciousness. Yet we do not know… for sure. So we are plagued with lingering doubt… core existential fear. For some there may well be a hope… a prayer… for non-existence… for not waking up. But if life after death resembles life prior to death at all, it would be wise to presume that, everywhere I go, there I am. We cannot escape our self before dying, so it would be foolhardy to think we can do so after dying. Maybe we can, but based on what we see going on around us all the time, the odds appear to be stacked against it. In spite of those who might prefer non-existence however, there is such a thing as a “will to live.” All living things seem to be driven by this innate urge. The other day I was watching a documentary on TV depicting massive colonies of shrimp living near columns of rock on the ocean floor where streams of hot water pour from volcanic cracks in the earth’s crust. I could not help but marvel and wonder at why anything would want to live in such an extraordinarily isolated, dark and dreary place. I mean, what do they do for fun? What possible joy could there be to “living” in such circumstances. For many life forms physical existence is just a brutal moment-by-moment struggle. Why they would want to keep on keeping on is mystifying. The only conclusion I can imagine is that there is an intrinsic will to live… a non-questioning, compelling, one-way drive… not subject to any reason whatsoever. We are driven to go on living, period… no rationale necessary. Even those lunatic terrorists who blow themselves up in crowded malls are first steeped in dogma about how they will not only survive death, but will even be rewarded for their mischief. So there is a built-in, powerful will to go on living… a horror of ceasing to exist… this is embedded in our inner-most being. It is an incredibly powerful drive that cannot be eliminated, only allayed to some degree… and that, largely by working to convince ourselves that death will not be our “end.” So there are a variety of fear-inducing factors involved with dying, most of which cannot be eliminated but merely mitigated… or palliated… made relatively less difficult. The pain & suffering, sadness & regret, and of course the fear are the price of learning… of growing… of becoming more conscious. We will have to pay the price regardless, so we ought therefore to receive as much on our investment as we can get. We would not think of going to the grocery store and handing over the money for a month’s worth of food, then walking out empty handed. That would not be considered a “good buy.” Should we not likewise consider “good death” to be one in which one’s investment yields a good return… as much growth as possible for the steep price that will be paid regardless? Michael
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Managing symptoms for a "good death"
Here is an aspect of caring for the dying that hospice nurses must wonder about from time to time, and certainly it is relevant to achieving good death… because the fear of death obviously impacts the way we dies. We often hear it said that no one really knows, for an absolute certainty, whether we survive death… which is quite true. We can put together a compelling argument that it must be so based on direct observations of the dying and particularly that category of phenomena we now call “near death awareness.” We can study quantum physics and find compelling evidence in that arena as well. We can consider the preponderance of human opinion and even our own, personal extra-sensory experiences. We can also consider the implausibility of the contrary argument that “life” (defined as biology) could have resulted from an impossibly long and complex string of accidents… not to mention that if that were actually true, then life is utterly devoid of any purpose. But when it comes right down to it, we cannot be certain whether life transcends death… until we die of course. To be perfectly frank, I never met a dying person who did not display some fear of death. Which leaves us with the rather unsettling conclusion that studying death does not negate the fear of death. In which case we cannot help but wonder… why bother? If we study dying process until the cows come home but still fear it, what’s the point? Michael
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Managing symptoms for a "good death"
Allow Mystery… I assumed you’d had a tough day, but got a good chuckle out of your remarks just the same… I’ve been there myself! I have been contemplating the cutting horse analogy and concluded I like the dance analogy better. When interacting with pt/fams there is always the fear that somehow we might mess up and hurt them in some way, so must be very careful to not let our “stuff” get mixed up with theirs. That is perfectly understandable and a very legitimate concern. In the counseling professions there is so much concern about this (transference) that it sometimes seems they are so aloof that they don’t really care. A counselor of mine once fell asleep while I was talking! Later on I told him I could get about as much benefit from taking his photograph, hanging it on the wall and talking to it for an hour a week as I could from paying him to listen. The thing is, if you are physically present with your pt (and awake) then at least some of your “stuff” will be involved. It cannot be prevented, but as always, you can be aware… so once again, self-awareness is absolutely key. Now, back to the dance… When interacting with a pt you are engaged in a delicate, intricate dance. You could say that there is no “leader,” or you could say that the lead is constantly changing… first the pt leads, then you, then back to the pt and so on. You may gently put something out for the pt’s consideration, that is your lead. The pt may or may not choose to pick it up. If he does then he is taking the lead, if not he is also taking the lead. He may then offer something back to you… perhaps a deeply held belief… giving you the opportunity to pick that up… if you are so inclined… thus taking back the lead. It is a dynamic give & take, a flow of shared self-awareness, and the more sensitive, alert and skilled the partners the more sublime the dance. Lightness of touch and sensitivity to multiple layers of meaning is very important here. But if you are there, so is your whole being. Michael
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Managing symptoms for a "good death"
finn… Yes indeed, you are quite right… as you define letting the pt/fam take the lead. I would refine it a little further… Have you ever seen a cutting horse work? You know… when a horse & rider (could be a cowboy or a cowgirl, it doesn’t matter) approach a herd of cattle, then select one and cut it out of the herd. Horses are specially bred and trained for this work and it really is amazing to watch. The rider directs the horse as to which cow should be removed, then basically just tries to hang on as the horse zeros in, anticipating the cow’s every move. They go into a sort of dance… twisting & turning, waiting & watching, then leaping side to side, bolting forward, then slamming on the brakes. Technically, the cow is “leading,” but the horse is directing. I think of hospice nurses as being in a somewhat similar sort of dance. Some might feel uncomfortable with this analogy, based on doubt about a nurse’s assessment as to what might be best for the pt/fam… which may in fact be the case, especially for the less experienced nurse. Besides, nurses are not taught this sort of thing, so how could they know? Then again, no one is taught this sort of thing… not docs, not SW’s, not chaplains… no one. However finn, you did present us with a classic example; i.e. your pt who felt there is nothing after death and thus, lingered. I observed the same phenomenon in my pts who felt death really does end life; i.e. they linger. So if we see this happening time and again over a broad range of pts, races, ethnic backgrounds etc, can we not then assume there must be some sort of cause & effect relationship between thinking death ends life and lingering? Is there some peculiarity of human character that sets up this predictable outcome? Knowing this, should not the hospice nurse then take it upon herself to direct the pt/fam in a direction she knows, from past experience, leads towards less suffering/lingering? Or at the very least, to have an explanation ready when family members desperately ask “Why is he hanging on so long?” All of this is treading on thin ice… because as I have said many times, there is no study of dying process in the academic world. Of course nothing of this sort is taught in nursing or med school… because there is no such study. In a very real way, hospice nurses are dangling out there totally on their own. Much of what they do is neither studied nor taught. They are in a rather precarious position really. Those who have done it long enough to start connecting the dots must be aware that as far as the academic world is concerned, there are no dots to be connected. The academic world says, “Death ends life, period… there are NO DOTS!” But you & I have been around long enough to know better. There are dots all over the place. The connections between some of them are obvious, (like dying people who think death ends life will likely linger) but for others the connections are not so clear. I have always hoped that those hospice nurses who have been around the block enough times to have begun putting some of the puzzle pieces together would step forward and share their thoughts and experiences. The fact that most seem very reluctant to do so speaks volumes about how thin the ice they are treading on really is. They see things, they know things, they put 2 & 2 together… but sh-sh-sh-sh… don’t say nothing. We could get fired. There are other factors contributing to why hospice nurses can be so secretive, but I think this is one. They are put into uncharted territory, then told to not say anything about what they see there. They are told, “That is for the SW’s & chaplains to take care of.” But it’s really not. It is no one’s job, and no one is supposed to do it. So when a family member begs to know “Why is he hanging on?” Sh-sh-sh-sh… don’t say nothing. Or if you do, it has to be done in the “artful dodger” mode; i.e. via a dance performed so artfully that the client thinks s/he is leading. Michael