Managing symptoms for a �good death�

[NRSKarenRN]

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

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.

[req_read]

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

[finn11707]

Yes, Michael--I agree that the exploration of consciousness, conscious dying, universal consciousness, self awareness, the spiritual nature of who we are is all very important for all hospice workers, no matter the variety. How some ever--there is next to nil training nurses get in school and next to no budget or availability for CEUs along this line. Even written materials on the subject of consciousness as related to the dying process is not plentiful. Do we need to learn it?...By all means!!!! After all, I believe this is why we are drawn to the hospice work. Of course, you have heard quite a bit of what I think...so I will sit back and hope we hear some perspectives from others on this subject.

[req_read]

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

[finn11707]

"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..."

Michael--so true! But not exactly...

I raised similar concerns recently at one of our hospice support meetings--where hospice staff may discuss the heart and angst of the work we do. Some of our most committed staff were there. I thought the issue would also speak to their understanding, committment and interest in our work. Everyone looked at me blankly, in a pregnant pause. Then, one nurse spoke up, commenting how important she feels it is to just let the patient lead and not try to lead them with 'our agenda'. I think it is a common way nurses both view and practice hospice work. The art of being present...respecting where the patient is...not guiding, or studying the work. It is not a denial of the spiritual nature of the work. It is not a denial of the importance of the spiritual work necessasary for a couscious death--a good death--or a best possible death.

If we ask a hospice patient "what does dying mean to you?" (at the right moment), we learn important clues as to the work still remaining in that person's life...what is still attaching them; what might be problems or helps for them in the dying process. I think hospice nurses have difficulty both framing and viewing hospice work as a study of 'what death is". As we work in hospice for some time, we of course learn about the work and practice better through the knowledge and insights we gain along the way. We have 'studied' the work and learned, if you will. Perhaps nursing programs have changed, but when I went through several years back, there was no focus on dying process and nursing support of it. Perhaps this would be a place to start. Study in the classroom helps, but as we all know well... we really became nurses and learned the most when we were out there working with patients.

Again, we all arrive at the hospice work knowing there is much to be learned--for ourselves. Perhaps. not knowing exactly how to engage in all aspects of the work, but with a readiness to learn and to honor the importance of the work.

You are so eloquent Michael...and so challenging at times! You have taught us much. True not many have joined this thread by directly posting. But if you look at the number of readers of this thread, you must acknowledge the awareness of the importance of this study.

"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?"

I believe we are not lost in the wilderness. We have arrived at the door. We have begun at the starting point. We are learning what death is and is not. Through the work, we learn important truths and we find our voice.

[req_read]

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

[req_read]

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

[finn11707]

No apology needed Michael,

Those of us who write to you in this post context expect to be challenged to think deeper. You have experiences, insights and a way of thinking about deeper hospice work that helps to stretch our thinking. That is good. We have to be a little tough skinned to do the work. You help us to develop that, at times. That is good.

I dare say, all who post on the topic of dying are aware, personally, that the dying process is a transition to what lies beyond--(that there is life beyond). In other allnurses threads which touch on spirituality and religion in nursing care to patients--praying with patients, expressing one's own beliefs with patients and such--attitudes are clearer. Nursing is a profession with boundaries imposed. Nurses translate and set their own boundaries based on many things including actual guidelines set in nursing ethics, employer guidelines, personal ethics, personal beliefs and much more.

"letting the patient" lead is, I believe, a way of listening for the moment when a patient is ready to go there--engage in discussion of their spiritual transition, what lies beyond, what we have wittnessed with others who have died. It is not a bad thing to wait for the right moment. As long as we aren't ignoring the moments when they show. "Letting the patient lead" can also translate to letting the patient state their level of comfort in things such as religion, after life and how they want to approach their transition.

I know there are many deeply christain people out there practicing hospice nursing and I am relieved to hear that, for the most part, they are keeping their own beliefs in check so as to not take advantage of patient vulnerability and anxiety when it arises.

Once I had a patient who lingered for several weeks, restless and asleep. He had worked for several years in a mortuary 'backroom'. In our conversations about what he had learned there, he stated he was not afraid to die, but did not believe there was anything after death. His wife and I had many conversations while he was asleep and restless. She decided, he was trying to make sense of what he was 'seeing' in his transition. And, because he had believe there was nothing beyond, it was taking a bit of time to make sense of it all.

That conclusion was what comforted her through his lingering. She talked to him about it and he let go.

[req_read]

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

[Allow Mystery]

I apologize for my blanket criticism of Msws and Chaplains

in a previous posting, obviously I had a bad day. I, too,

appreciate the team concept of Hospice, and I've seen

good outcomes as a result.

finn and Michael, I enjoy your postings and continue to

gain insight from your wisdom and experience. Thanks!

[req_read]

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

[finn11707]

Allow Mystery,

You are like the rest of us. At times we all feel alone, overwhelmed with the intensity of the work. It is why the team concept of hospice works best, when it flows. Of course there is always the chance the MSW or chaplain is not available... Then the case falls mostly to one...the nurse likely, since the nurse is in there most often. I have always felt it is both a gift and a challenge to attend to patient's spiritual angst. When it's something that's not pressing, it can be passed to chaplain/MSW for f/u. But, so often, it is the heartfelt moment that presents itself and nurses need to be comfortable with acknowledging and honoring the importance of its arrival. There is something of great value in that person who has been monitoring signs and symptoms, progression of disease and decline speaking to the realization that arises...We all know it is coming. It is an honor to acknowledge it and speak to the 'celebration' of this body as it has served this life.

Allow Mystery--you will like this...Today, I visited a youngish patient who has been back and forth at the edge of turning. We were talking about the signs of 'turning'--a topic she raised herself today...she stated she tends to like "allowing a little mystery" so wanted to not speak too much about the dying process. She went on to state she plans to "live and leave with celebrations"; then went on to share her self-planned, elaborate, prepaid memorial celebration. (It will be pretty incredible, mind you!) We honored the way she is fully enjoying this gratitude part of her journey. Gift giving, sharing love and memories, planning celebrations. Her way of saying goodbyes.

Yes, the dance analogy is a beautiful fit, Michael.

(And,I have always enjoyed your irreverent comments that speak to the blurred roles of the RN, MSW, bereavement worker, Chaplain team members.)

If we can just get our egos out of it, we can really free up a lot of energy to do our work. (I am not pointing a finger at any one, in particular)

[req_read]

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