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Great! Best Wishes. Michael

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

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

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

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

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

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

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

zenman… Interesting. So what do you think? When dying people are “unconscious,” are they working? Are they processing? Is it situational? Michael

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

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

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

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

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

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

finn… I apologize for being such a hard____, but I believe the point I am rather infamous for hammering on here is an important one. What we think really does matter… it has very real consequences… sometimes irreparable consequences. It is generally assumed that if we do not say what we are thinking out loud, then no one will ever be the wiser. Wrong! What we think silently does come out, sooner or later, in some way shape or form. Also, people are capable of perceiving outside of the limitations of their 5 senses; i.e. via extra-sensory perception… especially when they are dying. So it is very important to be cognizant of what we are thinking. It matters. But again finn… I apologize to you personally. Michael

There are things which, if we think about them directly, seem overwhelming and perplexing… so we avoid thinking about them as much as possible… because feeling overwhelmed and perplexed is not so very fun. Yet at the same time, on a lower level of consciousness (I would hesitate to describe it as a “subconscious” level because it is higher then that… but not entirely “conscious” either) we have what might be called “working” definitions of things… things that if asked we would simply say something along the lines of, “I don’t know. That’s just too overwhelming and perplexing for me to comprehend.” So delving into human thought patterns, especially about some of the most basic, foundational thought patterns (such as those dealing with death… perhaps THE most basic human experience) is truly challenging… so steeped in irony, contradiction and paradox! We say we do not have or even know of a definition of death, and then we proceed through our work-a-day existence operating with a working definition of death. All of which suggests how difficult it is to study the subject. You ask people if they fear death and they say they don’t… in spite of the fact that they obviously do. You ask them if they have a definition for death and they say they don’t… except that they do, and use it every day. The nurse in your meeting who commented on how important it is to, “… just let the patient lead and not try to lead them with our agenda,” is typical. Hospice nurses deal with perhaps THE most overwhelming and perplexing human experience of all. Comprehending what is going on there is truly daunting. But rather than simply admitting that, we are tempted instead to characterize our ignorance as a cause celebre′. In other words, when at a loss we re-define our sense of clue-less-ness as something laudable; e.g. we are “letting the patient lead.” That is rather like the wagon train master who hired an inept scout… who stumbled aimlessly about in the bush for awhile, then returned to announce, “I think I’ll let you lead… what with me being so magnanimous and all.” Describing one’s weaknesses as strengths is a clever ruse and fairly effective as an ego defense mechanism, but it is not terribly helpful to those patients who are looking for guidance. It is quite true that, “…hospice nurses have difficulty both framing and viewing hospice work as a study of 'what death is". Hospice nurses express concern over forcing their agenda on pt/fams… and well they should. But then they delude themselves into thinking they have no agenda… or that, if they do, they can keep it hidden. We all have agendas, hidden or otherwise, and they are always at work. Telling ourselves that we can keep our agendas isolated from our relationships is delusional… the equivalent of saying, “I am not human. I am above being human. I am super-human.” Personally, I have never met a non-human human… or superman either. I’ve met a few who claimed to be, but none who were. The best way to keep one’s agendas under some semblance of control is to know what they are… to be aware of them and aware of when they are threatening to take over. The not-so-hidden agenda of hospice is “end of life.” That is hospice’s working definition of death… the one they use every day… while at the same time claiming they don’t have one at all… which is demonstrative of a very low level of self-awareness. As discussed many times in this thread, we all have a social mask. Self-awareness is difficult to achieve because when we look in the mirror all we see is our mask. To get a peak at what lies behind the mask we need the assistance of a trusted associate… very often a spouse… who is sometimes annoyingly enthusiastic about pointing out our weaknesses… helping us peak behind our mask. When dying our social mask begins to evaporate, exposing us to view and making us feel terribly vulnerable. It is well then for hospice nurses to be gentle souls, careful to avoid exacerbating that sense of vulnerability… of being stripped naked before the world. But to do that well one must be willing to share that experience… to “die with” the pt. In other words, hospice nurses really should practice the fine art of self-awareness… so as to increase their understanding of what their clients are going through. But all too often the nurse’s lament of, “…letting the pt lead,” is brought into play… merely a technique for distancing one’s self from the pt… maintaining a safe, comfort zone. Which is fine… nothing wrong with that… but calling it a strength is a bit of a stretch… just part of the mask. When asked to define death the typical first response is, “Huh? You’re kidding right?” But in fact we do have just such a working definition… one we use every day. It’s just that, for the most part, we are not aware of it. However, once we do become aware of it, we have the opportunity to choose whether or not we like that particular definition. Then we can decide whether we want to continue with it, or amend it. Hospice’s working definition of death is: “End of life.” So how do you like that working definition? Does it fit well into your perspective of the world? Will it work well for you when you are dying? Do you imagine that (while dying) the thought that you are about to cease to exist will be comforting? The reason why becoming more aware… more conscious… is so valuable is because it opens up the possibility of choice. If you are not aware, you have no choice. While working at becoming more self-aware is difficult, it gives you choices. There is a saying in metaphysics: “High magic is nothing more than exercising choice.” And choice is made possible through self-awareness. Dying process pushes us, and it pushes us terribly hard… in the direction of becoming more self-aware. In other words, death pushes us in the direction of becoming more powerful beings. That is my agenda… right there, out in the open for all to see. I chose it… consciously. It was not thrust upon me by society… or by hospice (not that they didn’t try.) I picked my agenda out myself, and I rather like it. So do a most of my clients… judging by the emails they send me. I receive a lot of emails from family members who say that the hospice people were very nice etc, “but they really did not help us to understand what was going on.” I’m sorry people, but I get this kind of feedback on a regular basis. And arguing that pt/fams do not want your guidance, then repeating the rather self-congratulatory “let the pt lead” mantra is, well… sort of lame. Most of you nurses have worked for one or two different agencies. My clients are spread all over the country and the world. I receive a great number of “Thank you so much,” and “God bless you,” emails… but I have never gotten a, “I’m sure thankful you didn’t share your agenda,” email. Saying that death “ends life” is an agenda. It is not hidden. It is right out there for all to see. And it is harmful to your clients. Contending that you have no agenda is delusional. You do have agendas. You may be ignorant of what they are, but you have them just the same. Michael

finn… I share your hope of hearing from others. With the economy the way it is, expecting hospice organizations and agencies to voluntarily take on the burden of conducting studies into the nature of life, death and consciousness is, no doubt, wishful thinking. However, those who work directly with the dying are privy to invaluable information that few others are. I am still convinced that hospice nurses, if they would just share what they see and experience, could enlighten the public immeasurably. First however, it would be wise to take stock of where we are. “Death” is the huge elephant sitting squarely in the center of hospice’s living room… with everyone scurrying around it, studiously avoiding any attempt to describe or define it. The author of the article that instigated this thread presumed to define “good death” without making any attempt to define “death” itself. If you refuse to define a thing, how could you possibly discern whether or not it was a “good” thing? What if scientists in the field of astronomy refused to define the sun or moon, claiming that to attempt doing so might impugn someone’s religious sensibilities or ethnic traditions. So instead they simply ignored those two bodies while trying to carry on the study of the heavens amidst a chaos of myths; such as, the Sun is God and periodically (as during an eclipse) attempts to cannibalize our Mother- the Moon. And that is pretty much where we are at in our study of life, death, dying process and consciousness. In other words, we are lost in the wilderness. To even begin, we must first take hold of something… and declare a starting point somewhere. And the most logical place to begin is at the beginning. We deal with death…so… what is death? We can always update our definition as we go, but without at least a working definition we have thrown in the towel before we even begin. With no starting point we cannot start. To establish a starting point all we have to do is declare one. In something over 3 years this thread has generated more than 61 thousand visits, the majority of whom I presume work with death more-or-less regularly. It would seem strange indeed if none of them had developed personal ideas about it; i.e. about death. No doubt many have done just that. The trick is to induce them to share their thoughts and impressions. So again, I propose declaring a starting point… to begin at the beginning. What is death? Anyone? Michael

I am quite aware that many readers of this thread doubt whether pondering the nature of self-awareness, consciousness etc, has any practical value. But consider, when Ben Franklin flew his kite and captured some electricity, most people had similar doubts. “Okay Ben, that was cute… but what good is it… I mean, really?” Now, 200+ years later, look around. Have we found electricity to have any practical value? Now we have quantum physicists telling us that the physical realm is sort of an illusion, a product of mind… of “universal consciousness.” We think it (the universe) IS, and so it IS. So what? That’s an interesting thought, but does it have any practical value? If quantum scientists are correct… if consciousness creates biology instead of the other way around… what practical application does that have? Well, for one, how might that influence how we deal with stem cell research. Those opposed to it claim we should not destroy stem cells because they produce “life.” Yet quantum science tells us it is precisely the opposite: i.e. that “life” (consciousness) produces stem cells. Hm-m-m. If quantum science is valid, what does that mean in how we think about death? How do we define death? Our religious dogma tells us that death is God’s retribution for eating apples. An apple a day may keep the doctor away, but it sure seems to have ****** God off. Or are we missing something there? Actually, when you think about it, for “spirit” to experience the physical realm it has to attach itself, somehow, to a physical entity… a body. In order to maintain a body, that body has to eat. Whether it eats apples or chocolate covered peanuts is irrelevant… the point is, one must eat… or die. Which brings up that old buggaboo… death. Ugh! We all must die, but why? Because we’ve been bad? No, because being attached to a physical body is not our natural state. It is a great learning tool, but we can’t stay here forever. It’s like high school. It is part of our overall education, but we can’t stay there forever. Sooner or later we have to leave high school… move on. Get outa here! Take your diploma and beat it kid! Get a life! In that context, would “getting a life” equate to “end of life?” No, it marks the “end of high school” is all. Do we stop learning after graduating from high school? Let’s hope not. Some docs think that graduating from med school means they can stop learning… based on the presumption that graduating from med school means they now know everything. But we (nurses) see how well that works out in the proverbial end… NOT! Some feel that discussing the spiritual nature of who we are is so overwhelming… so mystifying. Some say that those who discuss things like that are “so spiritual.” This is like one fish telling another fish, I am more wet than you are. Huh? How could that be? Fish ARE wet… all wet alike. Similarly, we ARE spirit… all spirit alike… some just pay a little more attention to it, that’s all. Those who deal with death and dying professionally really ought to pay more attention to it than the average bear. After all, it’s their (our) line of work. And to understand something we must first define it. We can always change that definition as we go, but we have to draw a line in the sand somewhere just to get started. Otherwise we have no “science”… no “study”… of death at all. Instead we would have a whole bunch of people doing it (dying) with no clue as to why… thinking all sorts of goofy thoughts like, “It must be because I’ve been bad.” The “end” result of which would be to render their dying process even more difficult. And our goal is to make their dying process less difficult, not more difficult. Some say, “Well, some folks seem to like things difficult… the more difficult the better.” True enough… but not all. Those who do look to the “experts on dying” (you guys) would like an honest answer. And to give them an honest answer you must first think about death… starting with defining it. I was an orderly for several years before I went to nursing school. I was trained to call for the nurse when the poop hit the prop. Then, after becoming a nurse, the first time a crisis arose and I went to yell for a nurse, it hit me. Argh!!! I AM THE NURSE!!!! So, who do dying people who want an honest answer about what death is all about yell for? Uh-oh! Yes… you are all great at symptom control. But before you dislocate your shoulders patting yourselves on the back… there’s more to it than that. But there’s a wrinkle (isn’t there always?) The hospice system is set up as a team, and the SW’s & Chaplains are protective of their turf. “You’re just a nurse. Stick to your role and stay out of ours!” However, when your pt reaches that “moment,” and you are the only one present (which the nurses often are) and your pt asks that gut-wrenching question, “Will I survive this?” What then? “Argh!!! I AM THE DEATH EXPERT!!!! Now what? Michael

Allow Mystery… Stop beating around the bush and sugar coating everything… how do you REALLY feel about SW’s & Chaplains? When the original designers of the hospice benefit were trying to figure out how to effect “good death” it must have been a daunting challenge. Who knows anything about death & dying process anyway? So they hedged their bet and came up with a shotgun, or kitchen sink approach. Just throw a little bit of everything at the problem and maybe someone will come up with something… docs, nurses, SW’s and a bereavement person… and just for good measure, a gaggle of volunteers too. Actually, the bereavement person does not have to be a Chaplain. With a little on-the-job training, Joe the infamous plumber could be a bereavement person. Now that I think of it, he probably knows as much about death & dying as he does about politics & economics… but I digress. So what have we learned about dying process since hospice’s founders put together their benefit? Hm-mn-mn. Well, we’ve learned one heck of a lot about symptom control, and that is a very good thing. But what about death and dying process specifically… in and of themselves? What is death anyway? What are SW’s taught in SW school? Or Chaplains? Or docs & nurses for that matter? Well… ah-h-h-h… let’s see… grief process? Yes… Elizabeth K-R’s invaluable work. But that is “grief process” set against the backdrop of death & dying… but it isn’t really “dying process.” Here is something illustrative… The other day I was registering a book with Bowker (the only company licensed to do that sort of thing) and had to designate the subject matter. My choices were limited to the ubiquitous drop-down menu from which I had to make my selection. And guess what subject category is notable for its absence in our bibliographic data files? Death and/or Dying. That’s right, the single most common human experience is not even mentioned… it is not a legitimate subject for discussion. We don’t need no stinking ‘D’ words scaring people out of our libraries. The academic world has no study of dying process and our library system makes no allowance for the subject. How long has hospice been around now? Half a century yet? What have we learned about dying process in that time? Do we have a definition for death yet? Well, sort of. We have a defacto, or implied definition. It’s “end of life.” Maybe we should ask Joe… you know… the plumber. Michael

finn… If I were in your shoes (and thankfully I am not) I would focus more on the pt and less on the husband & daughter. “Life” will undoubtedly provide them with what they need… whether they like it or not… but the hospice nurse’s ally (death) just might open your pt up… just enough… for a burst of growth. Which is what dying is all about. Michael

finn… Intriguing case… yours. And a good one for illustrating the breadth and depth of factors that play into how a person dies… and whether we might consider that death to be a “good death”… or not so “good.” It even illustrates that when we consider applying the label “good” (or not) we must also consider how an individual’s death is likely to impact surviving family members… because a death that is “good” for the dying one may be almost inversely difficult for the surviving one. It is good to hear that your gut feeling is your pt will do well… and I do not doubt it. After the fact however, your bereavement person may have his/her hands full with the husband. Michael

finn… Hm-m-m… very interesting dynamic. Here’s my best guess… We get into ruts… paths that are not so very divergent… at first anyway… but over time the distance between the two paths keeps getting farther apart. Take a pair of scissors for example. When you open them at a slight angle, near the fulcrum the 2 blades are still pretty close together… but out at the tips (over time so-to-speak) they are farther apart. Then along comes death and the partners start looking at the paths they have chosen and some regrets start seeping in. Yes… a competitive relationships spurs each onto higher achievement… but what about tenderness? Ah yes… what about the tenderness? My parents had a somewhat similar relationship in that they argued almost constantly. They would come to visit and then sit an argue… I dreaded being around them. Then Mom died suddenly in the operating room. I was not there (of course) but my brother said when the doc came out to inform the family the first words out of my dad’s mouth were, “Oh my God! And I was so mean to her.” But then he quickly recovered himself and never said anything close to that again for the rest of his life… quite the opposite. He spent the rest of his life telling anyone who would listen how wonderful she was and how he had always worshipped her. In death, my mother suddenly became “Little Sweet.” In effect, my dad spent the rest of his life desperately attempting to convince everyone (mostly himself) that their relationship had been something entirely different than it was. Perhaps your pt’s husband would like you to “make her understand” she is dying so that she will acquiesce… stop competing… because he won’t until she does… like two buck deer whose antlers have become locked together while fighting and now they can’t get apart. However, either one of your couple could CHOOSE to let go at any time. That would be the break. If the pt breaks first, maybe it won’t be to her husband… maybe it would be to a “safe” 3rd party… such as yourself for example. You can’t “make her” do anything of course, but you can sprinkle some cookie crumbs leading towards a different path. Maybe she’ll pick them up… maybe not. Maybe he will spend the rest of his life, like my father, trying to re-write history. What I wonder is… what are her post death expectations? I nearly always got around to asking that question… because it always seems to have such a bearing on the process. But it has to be asked at the right moment in the right way. If you sense a moment of softening… a potential for tender human connection… when she and you are alone… you might ask something like, “I’m curious, but what are your expectations?” That leaves her plenty of wiggle room to not answer if she chooses, but it’s like putting out a cookie. “Here it is, if you want it… if you don’t, that’s fine too.” Just stay ten thousand miles away from proselytizing. If, when I am on my deathbed, someone asks me, “Have you met Jesus?” The next thing they will see is the muzzle of my pistol and me asking, “Would you like to?” What we have to offer is our “being”… our human-ness… a little tenderness. It sounds like your couple do not have a great deal of that in their relationship. They had competition and lots of social “success,” but working with the dying has a habit of fooling around with our definition of “success.” Also, be alert for your pt putting out a cookie of her own… for you to pick up… during some quiet moment of potential human connection… some subtle turning towards tenderness. When training a horse you have to watch very closely for some subtle indication that they are “getting it.” A trainer I used to know said that when a horse licks his lips, that is a sign he’s thinking. In that sense, watch for your pt to lick her lips. Michael

PS… finn… I forgot to address one of your questions; i.e. what should you say if your pt breaks and presents an opening… drops his mask? Answer: I don’t know… but you will. It’s situational. You will be there, I won’t. You’ll know. Michael

finn… I’m having to make some guesses as to the particulars of your pt/fam’s situation… it sounds like the one dying is the one who has been in control? Relationships between couples are, very often, not “adult-to-adult”… not as equals… not horizontal, but vertical in nature. The “leader” likes this arrangement because it gives him/her a sense of control and “better than” status. It’s a short-term “high,” but has a variety of negative consequences. First, the leader is always alone… has no true partner… no adult-to-adult relationship. It’s lonely at the top. Then, when the leader dies, there is a power, or leadership vacuum… which causes all sorts of mayhem in the rest of the family system. And of course the dying leader discovers that all the “highs” of seeming to be in control were false. It was just a form of self-delusion all along. So death teaches us who we are, and it’s a real bummer to discover that “who we are” is someone who is severely self-deluded. And when that realization comes crashing down it’s even worse to discover you have no adult to adult relationship to fall back on. Oops! My wife & I resided across the street from our POA for about 5 years and our relationship grew over that time. He’s sort of scary looking… not anyone you would want to start trouble with. At first he thought I was a real screwball and bigot. He would see me staring at him kind of funny, not responding to his subtle gestures. Then I introduced myself and told him I’m legally blind… I’m not a jerk, I just can’t see well. One day I asked him if he was a foreman at his job… because he acts like one… a natural born foreman… that’s what he is. He has not had an easy life. He has 3 kids… the oldest 15… who had a brain tumor (so far in remission.) We have been on a few hunting & camping trips together, and when you do that you get to know someone pretty well. We have talked for many hours about all the things I have written about. He thinks about things, then responds with well thought out questions and comments. He is bright, loyal, makes good decisions most of the time, a doting family man and intellectually astute enough to ponder deep philosophical and existential issues. He is not afraid to talk about death and dying, even to his children. It’s not easy to talk to your teenage son about the fact that he may die. It would be nice if he were in healthcare and understood that whole system, but I have explained a lot of it to him, including all the details of how Aunt Kay died… plus he’s struggled with the healthcare system himself. Since we moved we’re about 2,000 miles apart now, but we talk on the phone regularly. The lawyer, on the other hand, said if he were my POA for healthcare he had no intention of honoring my wishes, and further, had no interest in hearing my point of view. And being a nurse, I have an accumulated mistrust of doctors. It is a bias, I know, but there it is… at least I know that I have it. A savvy hospice nurse? Personally, I don’t know any. Remember, I quit traditional “nursing” in 1998 and work out of a small home office. This forum is my only connection to nurses any more… other than my wife of course. Michael