What's a good death? Most patients facing the end of life say it means freedom from pain and other distressing symptoms. 1 as nurses, we can play a major role in easing their way to a good death.
Managing symptoms in the last phase of life is especially challenging because you probably won't have the benefit of diagnostic studies to help you assess signs and symptoms. But as a nurse, you bring unique qualities to the table: assessment skills, a partnership with the patient and her family, and the determination to bring comfort.
In this article, I'll present a case study to illustrate the most common end-of-life symptoms, including pain, fatigue, dyspnea, and gastrointestinal problems. Whether your patient has all of these symptoms or only a few, you'll learn how to keep her as comfortable as possible.
I 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."
The 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.
I 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.
Picture this...
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.
Michael
"For in much wisdom is much grief: and he that increaseth knowledge increaseth sorrow."
I 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.
Michael
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.
OK, 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.
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.
Sylvia Plath
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%.”)
River1951 I have been "under the bed" myself. I was sorry to read about your co-worker. That stinks. That is what makes truthful hospice such a challenge to us. We don't work hospice. Hospice works us, if we let it. To our great gain and to our pts great benefit. In the 1980's I worked in an inpt hospice were the med dir had sought out Dr. Saunders in England and the SW was a Buddhist. I had NO idea this was ground breaking work. Back then we read Kuebler-Ross, Ram Dass, Levin and openly asked among ourselves, is your intervention for you or the pt? No vital signs, no uniforms. Just you doing what you knew to do. Boy Howdy, THAT was something. Truely conscious deaths are rare. I had one pt who had struggled with death imminent for days. Her daughters were young women with children of their own. Out of her own exhaustion, one daughter crawled into bed with her Mom and their breaths synchronized. Just as the daughter feel asleep her Mom died. Conscious? I think so, at some level. Today, i go into a pts home. I try for an open attitude of respect for all, especailly great respect for death. I can do the hocus pocus of med mixtures but I really try to tune into what the pt wants and let that be the music (as it were). I then try to guide care/love folks into hearing that
music. Sometimes I have to reach deep into the med bag, sometime very little if at all. For me, to evaluate a death the focus shifts to the folks. It is a good death if their hearts are not so wounded that they will not heal and they say, " Hospice helped." Hospice is much more art than science and I tell my pt/folks that. You are all right. Ten artists will paint the same tree ten different ways, all beautiful. Me, I want to die laughing with God slapping his knee next to me at my good joke.
Way back when I was an orderly (the term “orderly” gives you an idea of how long ago that was) there was an announcement that some lady from Chicago was going to speak on death & dying in the conference room. I did not attend. I was too busy trying to make a living on $2.87/hr. The lady’s name? Elizabeth Kubler-Ross.
In the case of the daughter falling asleep with her mom… did the daughter say anything afterwards? Did she “dream” anything?
Micheal and all, the daughter didn't say anything about a dream. In fact, it wasn't as wonderful as it sounded. Daughter woke up with a start and without even looking at her Mom yelled "I killed Mom!". It took some doing to talk her down to the sense that she had not done anything but comforted her Mom and maybe gave Mom the security to die.
We all have hundreds of stories but here is one of a different slant. I was working in a Catholic hospital and a nun had just died. As I left the room to call the doctor to inform him, another nun entered the room and began to quietly pray over the deceased. I heard her say, "Sister, Don't leave me."
No real surprise at ending. When I came back into room pt was sitting up and asking for water. I called the doctor back and laid blame of second call on praying nun. Pt lived a few more days and did die but had a nice chance to say good byes to all.
You might not have appreciated Kubler-Ross in person. For those that never heard her, she had a very thick accent and a rather unremarkable presence. But she was a pioneer of thought that is cornerstone today. Her later writings were affected by her physical challenges and "out there". I thought she may have been affected by multi mini strokes that caused vivid hallucinations. (Or maybe she could have lunch in NewYork and still be home in California.) Who knows?
We have all heard of patients who “died,” then wake up… or “un-die” for a time. I only saw it once (while in ICU.) We coded a guy for quite awhile and finally it was called. Ten or fifteen minutes later a nurse walking by the room noticed a rhythm on the monitor. The guy woke up and the last I saw of him he was sitting up in bed talking to his wife and being wheeled out to the floor. I heard he died again a couple of days later, but that time it stuck.
A patient I pronounced (while in hospice) gave me this nagging, persistent sense that he was trying to get back into his body. I don’t know why, but I just felt like his dying had taken him by surprise and he was not ready. I stalled quite awhile before actually writing down the time of death and calling the funeral home. I talked with his wife for some time but kept going back into the patient’s room, half expecting to see him sitting up. Having a guy sit up in a heorifice after I had pronounced him would have been very embarrassing to say the least. I suppose it could happen though. I saw a documentary once about a guy in Russia who lay “dead” in a cooler in a morgue for 3 days, then woke up and was fine.
Anyway, I agree with River that it would be good for hospice nurses to share experiences, impressions, thoughts etc. No academic institution or hospice organization is making an attempt to study dying process so if it is going to be done at all it will have to be done by us. Even an informal study based on anecdotal data, limited and flawed as it may be, is better than no study at all.
I would like to invite input on the notion that “hitting the emotional wall” is a transient phenomenon… a stage or phase in a larger process.
For example; in Elizabeth Kubler-Ross’s grief process outline the patient is expected to be in “anger” at some point… but we don’t expect them to stay there permanently. We expect it to be one of several stages they will go through in a larger process. So it might be logical to assume (and I have seen it many times) that a stage of emotional crisis (sometimes diagnosed as “terminal agitation” and treated as a permanent condition) might actually pass of its own accord… or might be passed more quickly with appropriate intervention and support. Of course there are those whose terminal agitation is persistent… perhaps permanent. But I think there is a distinction which deserves study, lest everyone who gets riled up at one point or another is put on a mind-numbing regime of meds which could hinder their dying process by interfering with their resolutional tasks.
I think we should also keep in mind that it is not just patients who experience these processes; i.e. grief & transitions. Family members and those who have grown close to patients also go through complete grief and transition processes. Hospice nurses inevitably become close to patients from time to time, and when that happens they can expect to experience grief and/or transition process themselves. In which case it would be good to develop familiarity with what that involves.
And this is not just academic theory, it has practical implications in our daily lives. For example; one of the last times we moved my wife said to me a couple of days prior to our departure, “I’m scared. I am just plain scared.” Now understand, this whole move was her idea in the first place and here she was bordering on panic. I said, “I know. You have hit the 4th stage… the emotional barrier. I felt it myself day before yesterday. I experienced it as waves of inexplicable, intense anxiety. But it passed… and yours will too.”
It did. No meds were required.
One of the primary points I am trying to make is that it is important to realize that the stages of transitions are normal… to be expected. Before Elizabeth K-R came along we tended to view grief as pathologic. In the post-Elizabeth era we realize grief is normal… even healthy. The same goes for transitions. There comes a time when we are supposed to be scared out of our ever-loving wits. That is normal, not pathologic. That means we are real human beings, not freaks.
The hospice art is being able to ascertain who is dying and who is still working toward dying and offer succor as appropriate. Decreased LOC, terminal agitation, audible respiratory secretions and increased pulse these are part of a process of imminent death. Each has a well documented physiologic reason and often a perfectly good med management, if indicated. PRIOR to the train starting to leave the station, the pt can experience any of these with an emotional/spiritual cause. The intervention changes. Haldol to handholding. comprende compadres?
As for fear, there is fear, there is FEAR and then there is internal body alarm systems going, "Warning! Warning! Do something. Fight, flee, pray, but the heart you call home is about to stop." No text can tell you the difference between a somatic body system rush and the angst of emotional fear and pain. (All the above applies to the folks involved.)
Sometimes the best place for the pt/folks to be during the process is on the river de Nile. Everyone can be on that river and floating on but I try to stand by with the paddles.
req_read
296 Posts
I 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.
Michael