Managing symptoms for a "good death" - page 7
found at nursing 2006: november 2006 volume 36 number 11 pages 58 - 63 managing symptoms for a "good death" marylou kouch aprn, bc, msn contact hours: 2.5* expires: 11/30/2008... Read More
Jan 6, '07What wonderful posts!! Thanks guys.
I laughed at your line: “…albeit not yet speechless.” I suspect speechlessness is not in your sign.
I got sort of choked up reading about your interaction with the pedophile. That was inspiring.
Shall we gird up our loins and discuss dying and religion? I’m all for it, but it would have to be done with the greatest of care… and realistically speaking, would probably attract a fair amount of nasty sniping and back stabbing (not an unknown phenomenon around these parts.)
Discussing religion and dying is kind of like lighting up a cigar while sitting on an open keg of gun powder. Then again, all hospice nurses see it (the effects of religion on dying.) Of course many “see it” within the context of their own beliefs and to one extent or another, see what they want to see.
You bring up a variety of issues… some hit rather close to home.
When I lost my eyesight I became “useless,” just like that. Working through that mind-set took years… and involved many poor choices (on my part) along the way.
Your line (nettie): “…it’s my simple observation that people go unconscious to some degree as they get nearer the Big Transition.” Statistically speaking, that is indeed the probability. But there are those instances (rare percentage-wise but common in terms of raw numbers) where that does not happen… where people actually do step out of this realm wide awake. Those are the ones who fascinate… who make your jaw drop and then ask, “My God!!! How did s/he do that?”
Another factor is this: You are more likely to see it (conscious dying) if you look for it. It may or may not be obvious.
From what I have observed, the people who do die consciously… perceiving where they are going I might add… tend to be people who know their Self… thoroughly. Which lends credence to the advice: “Know thyself and be free” (wherever that came from.)
Switching gears just a little…
The term “patient’s wishes,” in all its variations, is not always quite so clear. Let me haul a skeleton out of my own closet by way of illustration (I will try to be brief.)
Many years ago, while working Peds, I had a 16 yr old male with cystic fibrosis (affecting mostly his lungs.) He had watched an older sister die of the same malady when she was 18 yrs old. He swore he would not die that way… he swore he would not be put on the vent.
For his 16th birthday he got a car… and of course he wanted to fix it up; i.e. paint it. Well, inhaling a bit of paint was all it took to push his poor lungs over the line into the incompetent range. He was admitted to the floor where his status hung in the balance… and naturally it was at 0230 in the morning; i.e. my (night) shift, when he began to crash. At that point things happen fast. I asked him what he wanted to do. He gasped, “Intubate!”
I called the pediatrician… he said, “Call anesthesia.” I did, and just that quick this young man who swore he would never be put on a ventilator was transferred to ICU… on a ventilator… where he died about a month later… after experiencing all the horrors he had sworn to avoid.
Now I ask you… what exactly were that “patient’s wishes?” Were his “wishes” the ones expressed with calm, deliberate conviction? Or were his “wishes” the ones expressed in a moment of panic?
The next morning the pediatrician called the University experts. They told him he should never have put the kid on the vent. I can tell you it still haunts me some 26 years later. What say you? What should I have done?
And oh yes… by the way… one of the pitfalls of the “caring” mind-set is self-neglect… sometimes woeful self-neglect. Nurses are subject to this malady, so it is good to keep in mind.
Nettie… A lady in Australia began her email to me with “Crikey!” What does that mean?
Jan 6, '07Hi Michael
Thanks for your post.
"Crikey" is a common Australian exclamation that has recently come into focus because one of their popular and funny conservationists died dramatically and tragically when diving near stingrays - he got stabbed in the heart by the barb of one. Steve Irwin was known for his extreme enthusiasm; he did lots of TV stuff. He'd say "Crikey! Look at this beauty!!" (Meaning, Wow! Look at this big one - often a crocodile.) Here's a link: Australia Zoo - Crikey - Desktops
"Crikey" was his catchword. (and it's actually watered down blasphemy based on 'Christ').
You said: "Shall we gird up our loins and discuss dying and religion? I'm all for it, but it would have to be done with the greatest of care... and realistically speaking, would probably attract a fair amount of nasty sniping and back stabbing (not an unknown phenomenon around these parts.) Discussing religion and dying is kind of like lighting up a cigar while sitting on an open keg of gun powder. Then again, all hospice nurses see it (the effects of religion on dying.) Of course many "see it" within the context of their own beliefs and to one extent or another, see what they want to see."
Well I don't mind talking about religion and dying. I think I can see that I'm a product of my experiences and choices and environment just as everyone else is. I agree that we often see what we want to see etc.
From how I see it the USA has more religious people in it that NZ. We are quite secular here - many people are "practical atheists" i.e. God/ supernatural stuff doesn't figure much in their thinking. So I'm quite aware that we live in a post-Christian society and the cigar-on-powder-keg picture is a good one. Still, sometimes I lament the absence of a good talk about other-worldly things with people who believe other than me - but, understandably, it's often a 'taboo' door to open.
I'm keen though!
Having said that I'm about to go (in an hour) on a much-anticipated holiday - sun, sand, surf, heat, children, eating, reading, talking. I won't be lying in the sun though - that's against my principles! (We have a big ozone hole here so UV rays the worst - highest rate of skin cancer in the world I believe - here and Australia) So I'll be absent from my computer a week or so. I'll come back to you.
About people dying consciously, I'll certainly be looking harder for people dying consciously. I've heard stories of people seeing things/people and having looks of great anticipation, talking to people already gone on, having premonitions etc. My experiences are much more banal but I'll continue to hope.
About the 16 year old with cystic fibrosis you said:...
"Now I ask you... what exactly were that "patient's wishes?" Were his "wishes" the ones expressed with calm, deliberate conviction? Or were his "wishes" the ones expressed in a moment of panic?"
Oh, it's so hard dealing with a panicking person in the heat of the moment. I give them what they want if I can (what you did, as in what he wanted immediately). Actually facing death is different from the thought of it (apparently). So he wasn't really ready to die? Understandable at that age. Sorry, I'm not much help to you here. (I was going to write 'useless.')
Thanks for sharing about your eyesight...incredible...unimaginable.
About self neglect - I only work four days a week. I really look after myself with my ladies hours.
Jan 8, '07A wide range of interesting issues have been raised… where to start? How about with nurse’s self-awareness.
Dying (or living) consciously may seem a rather vague concept at first. But getting down to specifics can help to clarify.
For example: There are lots and lots of drivers on the streets. What percentage of all drivers would you calculate are “good” drivers?
Another example: As nurses we see, from the inside, how individual doctors conduct themselves. There are a few doctors we would go to if we were really sick. Then there are a whole bunch of doctors we would go to if we had the flue and just needed some basic meds. And of course there are doctors we would not go to EVER! So among doctors, nurses have a pretty good idea of which ones are “good.”
Now… one of the greatest difficulties in achieving accurate self-analysis is that it is hard to see one’s Self. It really is. Plus we are biased about our Self. Our knee-jerk reaction is to defend it, not analyze it (Self.) Therefore one of the keys to good self-analysis is observing the people around us, then assuming there must be some parallels.
So we see, and quite clearly I might add, that only a portion of all drivers are really “good,” and only a portion of all doctors are really “good,” so we must assume that only a portion of all nurses are really “good.”
Next… what makes them “good?”
Actually, I am using the term “good” more in the sense of being “exceptional.” Who stands out in hospice nursing? Who is exceptional? And what are the characteristics that put them in that category?
I would suggest that being in that select category requires a good deal more than just familiarity with the PDR. I would suggest that a good example of an exceptional hospice nurse would be someone who demonstrates love towards “the least among us,” say for example a pedophile. That is “worshipping God” by trying (as in- “working at it’) to be more God-like.
Unconditional love is a profoundly profound concept. Few can even grasp the concept much less practice it in tough situations. Many have difficulty conjuring up a reasonable facsimile of unconditional love towards even a “new ager,” much less a pedophile.
The pt in my experience who died most graciously (and consciously) told me that she actively worked (underline worked) at developing love… within her Self.) She said it does not come naturally. She told me that we aren’t born with it, we have to work at it. When we catch our Self not being loving, we must consciously choose to act differently. It is a choice one makes… and works at developing.
I would suggest that is what sets people apart… and since nurses are people, that is what sets nurses apart as well. And it has nothing to do with ethics or morality or what religious group you belong to. It is eminently practical. It has to do with what actually works; i.e. what behavioral and thinking patterns tend to yield a more gracious (as in- less suffering) dying process.
When I speak of “good death” I do so in the sense of one that achieves a certain degree of elegance… with a minimum of suffering… not only for the pt but for those around him/her as well.
Someone spoke earlier of “coming full circle.” What each of us brings to the proverbial table is our Self, and that Self emanates expanding circles of whatever it is we create in our personal reality… rather like dropping a pebble into a still pond… an ever expanding series of circular waves is broadcast from the center. Those who emanate a sense of love are easy to deal with… and amazing to observe. Those who emanate fear, shame, anger etc. are tougher to contend with… and far more common.
Dysfunctional people must “act as if” they were functional if they ever hope to rise above their learned, dysfunctional behavior patterns. In other words, their learned behavioral patterns have to be un-learned… which takes effort and time.
The average response to that statement usually goes something like: “Okay… I can accept that. All those dysfunctional people out there need to start “acting as if.”
But here’s the clinker… we are ALL dysfunctional.
Yes… that’s a fact.
So if we ever hope to rise above our own dysfunctionalism we must “act as if” we were not dysfunctional. We have to work at it. If we work at it long enough we may get to a point where it starts to come naturally… without thinking… when we “just do it” instead of consciously having to make that choice. I would judge that in Leslie’s case she has reached that point… the point where she just does it… no questions asked… no trying to act. And that, I would judge, is a true example of “worshipping God”… of working at being more God-like (as opposed to merely flattering God with our puny praise.) They say that imitation is the sincerest form of flattery, and working at imitating unconditional love until it starts to become reflexive is high praise indeed.
In a previous post I said Leslie’s interaction with a pedophile was inspiring. Perhaps now I have made it more clear as to why. I really am not impressed by someone who claims to “accept” Jesus (whatever that means.) But I am awed by someone who works at acting like Jesus… or God, or Allah, or Buddha, or the Great Spirit, et al.
No one can be forced to achieve conscious dying… nor should anyone be told they should try if they simply want to cross unconsciously. But for those who would like to try and would appreciate some guidance in making the attempt, it would help to have a hospice nurse who at least understood the concept.
Is an art, like everything else.
I do it exceptionally well.
I do it so it feels like hell.
I do it so it feels real.
I guess you could say I’ve a call.
Sylvia Plath (1932–63), U.S. poet. Lady Lazarus.
Jan 22, '07Hi Michael Interesting to read your post. I have been very stimulated in my thinking by it. Maybe my reply is off-line as I'm not talking about death anymore. If I should go elsewhere to write these things, can someone tell me? I like your comments about knowing oneself and how hard it is to see ourselves clearly - in fact we can't, so the suggestion that we observe others and draw parallels about ourselves is really useful. Your post made me think back to when I was 18 (25 years ago) and how I was hungering for a better Reality. I found Erich Fromm's "The Art of Loving" in a library and took a few "bites" from it (too hard to take all in) which really inspired me. From that time I wanted to know how to really love and be unselfish; incredibly it was a new concept to me I believe. I was conscious of how selfish I was and hated myself (for various reasons no doubt but that's the state I was in.) Yes, we are all dysfunctional to some degree. No-one is all wrapped up and water-tight; we all leak. I tried to apply the principle of wanting the highest good for the Other (the ultimate kind of love I believe, which Fromm talks about) by offering to make cups of coffee all the time for my flatmates. They got annoyed with me (I was a pretty young 18). The internal searching got desperate and then I believe the gracious Great Spirit of the universe generously showed me what life was all about. For three days I was free of fear and inferiority and self destruction and I experienced a powerful love and energy in which I was full of desire to love and help others. I saw people 'melt' and open up before and I want to say clearly that this love wasn't from me or from a decision I made to be loving. As you say Michael "Unconditional love is a profoundly profound concept. Few can even grasp the concept much less practice it in tough situations." and I don't know why it happened to me. I'm not going to say that I practice this love all the time - there are multiple lapses back into self-protection and selfishness. But I know where I'm going and what I want in my relationships with patients and everyone else. As you say, self-awareness and self analysis are necessary and also I think it's necessary to quietly and internally imbibe this Love moment by moment. It seems to me that there's a major fork in the road regarding the common belief about where the love comes from. I know there is a lot of love and kindness out there amongst people who don't profess a religion or other practice. Perhaps it's just that I personally (emotionally bankrupt, dysfunctional etc) was particularly weak in love and needed help from outside. (Yes, I need a crutch to live; I'm really happy with this crutch!) So basically, as I understand things, Humanism says we have the power within us to live and love (and I agree we do to a certain degree) but Christianity talks about a power from an external source - God. I agree it does take work and discipline and self-awareness as you say - in order for the love to flow freely. There are other theological concepts to fill in the whole picture of how it works for me, eg. Forgiveness, changing one's direction, but I'm not talking about those here. I once listened to a preacher who's life story was very inspiring (Leonard Evans). He was searching, searching, searching for a better reality. (He was already religious, a minister). His spiritual life was dry, he was desperate. He got to the point of saying, "Give me Reality or give me death." His testimony was that God said to him one day, "Love your wife." This was a major turning point for him and he finally understood that all through the years he'd been trying to love an invisible God who was the source of love (like turning on a hose and squirting the faucet instead of the garden) instead of the people who were flesh and blood in front of him - especially his wife. Happily he really practiced love after that and his wife was a very blessed woman. So obvious, yet so elusive. On the subject of husbands and wives, and back to my story when I was 18 - when I first went to a church (I was from a non religious background) my initial, unprejudiced response was, "Oh, it's not here! The Love isn't in Christianity, it must be somewhere else." Unfortunately many of the people in the church were 'asleep' spiritually (to my naïve assessment) and weren't 'practicing'. And the minister, I noticed, was quite offhand towards his wife but nice to us visitors when we went to his home. So there is the reason, I believe for a lot of the antagonism towards Christianity: we are all failures at it. Thanks for the quote by Sylvia Plath. A fascinating woman about whom I don't know a lot but her depression and despair come through the poems I've read (not many). I love TULIPS, Here's a link (http://www.angelfire.com/tn/plath/tulips.html) She refers to nurses in it, not to mention the wild, breathing, vivid, loud, emphatic tulips. Guess she had quite a bit to do with nurses. Here's the end of "Barren Woman": "Blank-faced and mum as a nurse." Hopefully times have changed! On a more positive note, "Make love your aim." - Paul, The New Testament Jeanette New ZealandLast edit by nettie01 on Jan 22, '07
Jan 23, '07Welcome back Jeanette. The beach must have been pleasant respite.
The topic of spiritual views is eminently relevant to a discussion of dying process in as much as it has an inevitable effect on how one's dying process plays out.
On the other hand, I learned very early on that asking patients which religion they belonged to told me little or nothing about their personal, spiritual views.
As previously stated, on a couple of occasions I have had dying preachers confess (to me) their own lack of faith. I know of one preacher who told his son (a personal friend of mine) that he does not even believe in God... that God is no more real than Santa Claus... and he is a highly successful and respected minister of the gospel (although I am sure no one in his flock knows his personal views.) Some of my own elderly family members (avid church goers all) have told me they do not believe there is life after death... but explain that they go to church for social reasons. And I have dealt with patients whose membership in a religious organization seemed to have been influenced by that organization's reputation for providing hands-on assistance to its members when in need, while their personal views bore little resemblance to those of the church.
So it is clear that supposed or claimed religious affiliation is a poor predictor of personal belief, much less of probable dying process outcomes.
Thinking patterns that revolve around exclusivity and divine favoritism for one's religious group are inclined to yield poor results. For example; those who like to think that their religious affiliation entitles them to fearless death, someone else dying for them, God sending around a figurative limo to pick them up when He is ready, being greeted by hordes of virgins on the other side etc, etc, ad nauseum are shocked when none of those things come to pass.
Although I did not write it down at the time and have since forgotten who said it, one of my favorite quotes goes like this: "A man cannot conceive of a god any greater than himself." So when a self proclaimed sage speaks of a vengeful, hateful god who revels in playing favorites I am inclined to believe such statements represent that person's rather limited understanding of unconditional love, not God's.
On the other hand, thinking patterns that are open, inclusive and loving tend to yield far better results.
One could argue the merits of this or that religion and never reach a definitive conclusion (as humans have been doing for thousands of years.) Then again, one could watch the dying to see how particular religious/spiritual beliefs play out in the proverbial end and obtain clear objective data.
One of the keys here is distinguishing between "religious" and "spiritual" views. Leslie said it best when she remarked, "i've always viewed religion as something learned and spirituality as something felt." (Her comment was made in the thread titled: "What's the difference?" I am sure you would find it interesting... it is about 6 pages back.)
I believe (Jeanette) that you are much better read than I. I am merely a collector of quotes. I used to read more (when I was able.) Now I look for the bare essence of things as expressed in a brief phrase or two. And my observations of the dying have lead me to the conviction that it is not what one says that matters (the façade) but rather what one does (the real person hiding behind the façade.)
"Forgive! How many will say, "forgive," and find
A sort of absolution in the sound
To hate a little longer!"
Lord Tennyson (1809-92), English poet. Sea Dreams.
The Earth was not set aside for the especial use of perfect people. Everyone here is flawed. And one of the most obvious of our flaws is our inclination to hate our flaws in others rather than working on them in our self. All of which is interesting in an academic sort of way... until we are dying. At that point the application becomes shockingly empirical; i.e. we discover, because we are all human, that the results of hating human foibles in others is virtually indistinguishable from self-hatred. And self-hatred yields poor results while dying.
Practical applications of all this might include things like (by way of examples)...
If a hospice patient boasts of his religious beliefs (early in his dying process) and seems inclined to think he will receive special privileges because of it, keep some sedatives and anti-anxiety agents in your back pocket for when reality hits. And if you have the time, try to be there near the end... he will probably need you.
On the other hand, if a patient has demonstrated openness, acceptance, a loving attitude and have worked through the seven stages of transitions, they will probably do quite well on their own... although you might want to consider visiting and perhaps witnessing something special.
"The human mind is inspired enough when it comes to inventing horrors; it is when it tries to invent a Heaven that it shows itself cloddish."
Evelyn Waugh (1903-66), British novelist. Ambrose, in Put Out More Flags, ch. 1, sct. 7 (1942).
Jan 24, '07Sorry I haven't read each and every entry here but I agree with Req_Read posting way back in 11-06. I very much miss the very real and dignified process of conscious transition to death that included everyone; pt, family , friends, pets and yes, even the hospice team. Early Ram Dass should be on the on the reading list. I will leave Req_ Read to tell you who THAT old coot is.
Jan 25, '07I am familiar with Ram Dass but have actually read more of Steven Levine's work. I heard a story somewhere that was attributed (I am almost sure) to Ram Dass. It has to do with how people can learn the same things, but by widely variant paths.
He (Ram Dass) was giving a lecture to a small group of people and as he spoke there was a lady sitting in the front row who seemed especially taken with the subject of his presentation. Of course when an audience is enthusiastic the speaker tends to become more so as well, so the whole thing was a resounding success.
After the lecture the lady from the front row approached Ram Dass and said that what he had been talking about really resonated with her and moved her a great deal. She explained, "Because you see... I crochet."
The point being, there is no one path to enlightenment... consciousness... expanding awareness... whatever one chooses to call it. One might arrive there by studying the works of Christ, by studying quantum physics, philosophy, Buddha, the Koran... or by crocheting.
"I maintain that Truth is a pathless land, and you cannot approach it by any path whatsoever, by any religion, by any sect."
Jiddu Krishnamurti (1895-1986), Indian mystic.
Jan 25, '07The point being that it really is the dying person and their personal dance with death. It isn't about a mediction. I usually ask pt and family what they think will help and whatever they suggest invariably does. I have to restrain myself from "pre-treating based on diagnosis". Pt asks, "What is that for...I answer to prevent secretions." Pt immediately gets juicy. Best question for a pt perceived "good death"..What do you want me to do?
O and I need to re-read Levine's words on grief. Good reminder.
Jan 26, '07I think the story about the lady in the front row who crochets has relevance to both hospice patients and hospice nurses.
The relevance of daily acts to spiritual awareness is, as I understand it, a key concept in Zen. Most any productive vocation, if practiced with an open attitude, can lead to greater awareness. The trick is to keep the practice open. By that I mean, continually striving to take it to a higher level.
Once a person starts to think, "Well heck gee whiz... I reckon I know just about all there is to know about this stuff," then all further learning stops. Once you have "arrived," your journey is over.
Mere belief in an afterlife does not amount to much. We are consciousness, so what really matters is being conscious of our immortality. We are immortal whether we like it or not... or whether we believe it or not. The question is: whether we are aware of it.
A key to being aware of immortality is, like that little battery bunny, the understanding that it just keeps going and going and going. We never arrive. Once you think you have arrived... that you know it all... then you stop learning. And that is anathema to an eternal being. In order to be aware of immortality one must act as if one is immortal.
The passion of consciousness is to become more conscious... it always becomes more. No matter how cool you think your perspective of the world is now, stick around, it gets better. But there's a rub... substantive learning is always frightening... which is why we try to avoid it.
So when you evaluate a patient and discover s/he thinks he knows it all, rig for shock. On the other hand, the patient who is open will do well... in fact, may not need you at all. Their religious training is almost irrelevant, although may add some interesting color.
As for how this is relevant to hospice nurses... once a hospice nurse concludes, "All this hospice stuff is just symptom control... and I have that down pat... so I guess I have arrived!" At that point you have stopped growing.
In a way, the only thing scarier than being mortal is being immortal. We like to think we can complete our work and then kick back. Sorry... that is not how it works for eternal beings. Get over it.
Mom, Pop & the kids are driving down the road. Sooner or later one of the kids asks, "Are we there yet?"
Dad turns around and says, "No we aren't. In fact we are never going to get there... we will be on this journey forever."
Immediately the kids all shriek in horror and yell, "Mommy, Daddy's being mean! Make Daddy stop!"
Mommy whacks Dad on the shoulder and says, "Stop it! You're scaring the children. They are too young to be told."
Proselytizers like to say, "If I could just get this guy to understand he could live forever, then he would not be afraid to die."
Nuts!!!! If the proselytizer truly understood his own immortality he would probably wet his pants.
"For in much wisdom is much grief: and he that increaseth knowledge increaseth sorrow."
Hebrew Bible. Ecclesiastes 1:18.
Feb 1, '07I have mentioned several times, in this and other threads, that “dying process” per se has never been studied. No one here has picked up on that so I will attempt to clarify.
Elizabeth Kubler-Ross identified discreet phases of grief process (of which we are now all well aware.) When I speak of dying process I am using it in the same way; i.e. not as a vague and general description, but rather as a definitive label designating an explicit series of phenomena.
In a previous post I mentioned the seven stages of transitions. No one picked up on that either so I shall elucidate with a specific example.
One of the 7 stages of transitions (the middle, or 4th stage) is the emotional barrier. One might think of it as- hitting the emotional wall. A patient might be perfectly calm both prior to and following this phase, but inevitably there comes a time in everyone’s dying process when they run smack into this barrier. How the patient responds and how long it lasts varies a great deal, but in and of itself, hitting this barrier tends to be a time-limited phenomenon.
Unfortunately, since there is no study of dying process, each practitioner tends to view such explicit phenomena in his/her own unique way. Over time a descriptive term may arise (usually vague) which resonates with individual practitioners and specific treatments (usually pharmacologic) come into favor.
For example: When a patient hits the emotional wall, their reaction is often described as “terminal agitation,” which is generally assumed to be a more-or-less permanent condition as opposed to a time-limited phenomenon or transient stage in a larger process. And of course the preferred treatment that has evolved is pharmacologic, often prescribed for “the duration.” There is inevitably some quibbling over exactly which pharmacologic agent(s) may work best, but almost never does anyone think outside of the proverbial box and consider that the agitation might be: a) a normal stage in a larger process, b) time-limited in nature, and c) might be handled by some means other than drugs.
I have seen and experienced the emotional barrier stage many times, in dying process and other life-transitions. In dying patients it often manifests as a sudden period of intense anxiety which seems almost impervious to medication. (adrenaline can override an astonishing quantity of drugs.) Then, just as suddenly as it appears, the crisis may subside, leaving everyone in a state of post traumatic exhaustion. And at those times I have sometimes wondered if the (drug) interventions I had employed really had any affect at all. I sometimes got the impression, after the fact, that a glass of Alka-Seltzer would probably have had the same effect; i.e. that the crisis would have followed the same course regardless.
Take the case presented by Leslie for example…
Did switching to Haldol really make a difference? Or was the patient’s “terminal agitation” really just a time-limited stage that was mitigated by her presence?
Some (in this thread) have suggested that the nurse’s role is to provide symptom control, but other than that they are a non-player… their role is merely to allow the patient/family to work things out on there own. That is a delusion. If you are there, so is your “presence.” Your presence affects the patient/family regardless… good, bad or indifferent. One cannot be there and not be there at the same time. If you are there you are affecting the outcome whether you like it (or acknowledge it) or not.
I have observed that one of the best interventions for these time-limited periods of agitation is the presence of supportive loved ones… absent that, the presence of a supportive clinician.
No one who frequents this forum could deny that Leslie’s “presence” has definite impact, and in the case she described I am inclined to think that the sheer impact of her presence had a great deal more to do with determining the outcome in her case study than did the Haldol.
Just as quantum physicists have discovered that their very presence affects the outcome of experiments, nurse’s presence affects the outcome of their patient’s dying process… good, bad or indifferent. Better to be aware of and consciously employ that knowledge to the benefit of both you and your clients than to simply delude yourself into thinking you have no impact. You have significance and are an ingredient in the recipe of your reality… which has to do with being conscious of who you are.
Being unaware of your own impact does not mean you don’t have one, it just means your impact is sort of inadvertent… accidental.
On Leslie’s behalf let me add that she seems well aware of the impact of her presence. (The case of the pedophile is but one good example.) If Leslie told me a glass of Alka-Seltzer would help my anxiety I would by God believe her! And if I believed it, it just might work.
On the other hand, if a hospice nurse came in and game me some Haldol for “terminal agitation” and then turned to leave, being the rather cantankerous old coot that I am, I just might load one of those Haldols into my wrist rocket and smack her in the back of the head as she headed out the door.
Every time a child says, “I don’t believe in fairies,” there is a fairy somewhere that falls down dead.
J. M. Barrie (1860-1937), British playwright. Peter, in Peter Pan, act 1.
Feb 1, '07OK, this comment pulled me out from the bed I've been hiding under the past week and a half.
I think this place you've described req_read, is where the thing called the therapeutic relationship comes into effect. I believe the fact that we walk on the road with our patients itself helps them walk down the road with a lighter heart.
I cannot otherwise explain situations like the one in which Leslie found herself. This is what our presence and our intent to help does, I believe.
I was thinking today about why we know so little about a universal experience. I think we should devise a data collection tool for use of hospice nurses to learn more. Could be useful or even helpful.
(I feel I have to explain my under the bed comment. Our hospice lost one of our staff nearly 2 weeks ago to a horrible accident- I'm not sure any of us have actually recovered yet, tho we're all present and working)
so if anyone has any extra prayers if you could send them up for Audrey's family- I'd really appreciate it- she leaves behind 2 little girls and one very lost husband.
Feb 2, '07River…
It seems that while we are in this physical realm our primary mode of communication is verbal, yet there is that spiritual connection, which is generally perceived nonverbally; i.e. via feelings, emotions, intuition, sensing… that sort of thing. So to be spiritually aware one must be willing to open one’s self to feeling… often to hurting.
When telling people I work with the dying I sometimes get that old response of, “Oh my God! How do you block out the pain?” My answer is, “I don’t. I learn to hurt.”
It is okay to hurt… to just sit in it.. marinate in it.
I do it exceptionally well.
I do it so it feels like hell.
I do it so it feels real.
I guess you could say I’ve a call.
It must be terribly frustrating for Audrey just now… not being able to communicate verbally with her children, husband etc. She must be beside herself with frustration, sadness and despair. I think that can be felt.
Occasionally communication between realms (physical & nonphysical) is perceived almost sensibly… as if with the (physical) senses. For children this is not at all unusual because spiritual sensing has not yet been completely taught out of them… they have not yet learned to distrust and lie about their feelings. For adults it is tougher… because of their learned intellectual orientation and distrust of that which cannot be “proven,” as in- reproduced in a laboratory. Although I have to say, hurting seems real enough to me. When I am in it, it seems like that is all there is… like it will never end. I know that it will , but at the time it does not seem so.
Check out the 2 audio excerpts by Melvin Morse M.D. (pediatrician) at the URL below (right hand side of the page about 2/3 of the way down, titled: “What Children Report” and “75%.”)