Managing symptoms for a ï¿½good deathï¿½

river1951 · Feb 17, 2007

Well, I can't explain it. Fool that I am, I actually thought lots of people would be talking about their patients and how they were able to help them resolve issues so they could have relax and be ready and not worry.

I never thought we'd be just the 4 of us talking to each other.

So, the question is open, whay aren't more of you guys in the discussion?

River

BeExcellent · Feb 17, 2007

Yes, to all. I think we need a separate thread on the spiritual aspect of a good death. Maybe this thread has just become too long and muddy for people to want to jump right in. I agree that every "midmorte" I have ever known has developed over time a strong personal spiritual beliefs. Many of us have found comfort and spiritual strength in our spiritual communities. But me having a strong spiritual conviction does not mean that I use THAT conviction to strength the pt and family. They can be helped to use their own spiritual strengths. One of the things I try to facilitate, if appropriate, is to have the family and friends start bringing in photographs of the pt. I start by noticing the photos in the home and then ask if there are photos of the pt as a teenage or a baby. What i am trying to do is show them that this dying part of the pt's life is such a small part of a rich life on earth. I love it when we have photos all over the pt room and laugh and cry at events. I know at some level tht dying pt is laughing and crying with us. What also happens is that inevitably some in the photos have since died themselves and folks can SEE that flow of life and start to part wht is happening in as part of that flow. Sad but not damaging.

req_read · Feb 17, 2007

Considering all possible responses to this thread, this is about the last one I would have expected. We have reached nearly 3,000 hits and have just 4 participants. I doubt that each of us 4 checked in 750 times apiece.

Puzzling as it may be, it does seem to reflect how people think about and deal with spirituality & religion… or perhaps I should say, don’t think about and deal with it. As I said in one of my books: About the only thing people are better at than procrastination is denial.

By the way Leslie, welcome back. I was worried about you.

In response to your post before last…

What I discovered when dealing with dying people is that after you cut through the religious outer covering you will eventually get to the core… or spiritual person. It is very much like the concept of the social façade. Indeed, the social façade and the religious façade are usually intertwined. And while there are vast differences in religions and religious doctrine, the human spiritual core is virtually universal.

It is sort of like language. There are hundreds and hundreds of different languages, but when you finish with all the interpretations it seems like people are all thinking similar thoughts.

Social workers like to study differences in religious doctrine and how that might affect outcomes. I always tried to cut through the veneer and get to the meat underneath.

Early on in dying process, when façades are still pretty much intact, the dying person still expresses learned responses. But as dying process progresses it (death itself) cuts through all the crap. I always viewed death as an ally in that regard. People could BS me… but not death. Death don’t take no crap off nobody! So I would wait… wait for death to do its magic and expose the core person. And what I found was, underneath the various layers of façade, the core is pure gold… spiritual gold. The various outer layers… the religious doctrine, the cultural background, the ethnic variations etc., etc. just add color… interesting color to be sure but nothing really substantive. It is like putting on colored glasses. Put on amber glasses and everything appears slightly yellow and contrasts are enhanced. Put on rose colored glasses and everything looks rosy. But the horizon… the overall view… is the same. Underneath our outer shell the core of who we are is universal. It is also beautiful!

There is so much going on in our world today that is driven by differences in religious doctrine. What I have seen in my dealings with the dying is that underneath there are no differences. So much of the suffering we see on the news is so tragic because it is so unnecessary.

Actually, when I think about it, the response to this thread accurately reflects the response by the general population to the study of dying process. There is no study of dying process in academia. I have said that several times in the course of this thread but now you can actually see it being played out; i.e. there is no response to an in-depth discussion of dying process in this thread… well, except for a handful of screwballs that is. And the really funny thing about it is… when people die they are forced to deal with it… think about it… face it… whether they like it or not. Death don’t take no crap off nobody. Until that time arrives however, people are inclined to leave it to the “experts”; e.g. the priests, shamans, ministers, clerics, mullahs, seers, et all. Then suddenly, when they themselves are dying, WHAM!!!! It dawns on them that this involves Me!

“What! ME?!?! I thought this just happened to other folks.”

The “experts” don’t die for you. You will have to tackle that on your own. If you’re lucky… and I mean really, REALLY lucky… there may be a midmorte in your immediate neighborhood… some screwball who actually thought about this stuff ahead of time… voluntarily… before being forced to.

Hey Excellent… that photo idea is clever. In sync with your notion of helping people to grasp the idea that their life on earth is but a small part of who they are I close (of course) with a quote.

Michael

Let us beware of saying that death is the opposite of life. The living being is only a species of the dead, and a very rare species.

Friedrich Nietzsche (1844–1900), German philosopher. The Gay Science, aph. 109 (rev. ed., 1887).

leslie :-D · Feb 17, 2007

yes michael, people struggle through sev'l stages before all facades have banished and their souls are bared.

it's exhausting to die; truly alot of work.

yet what you perceive as spiritual, i perceive as vulnerability.

there is a gutteral wholeness right before leaving but i still don't think it is synonymous with spiritual awareness.

for me, those who have attained true spirituality, have come full circle.

various levels of awareness have already died and then reborn.

we are at fellowship w/the universe and its' multi-dimensional levels.

vulnerability otoh, is a sense of feeling exposed but not necessarily being aware.

the paradigm is, ironically, is while most are vulnerable, most are also detached.

there's a fragile affect w/o being affected.

there's a sense of awe w/o being uninspired.

while we remain physically here, we are mentally 'there'.

we are sensitized by touch but remain untouchable.

we are aware yet still feel lost; that is vulnerable.

it is when we feel aware and can find our way home, one has attained spiritual unity.

so while i do agree with your post contextually, my question still remains: how does one transcend their religious inclinations, and die w/o any preconceived barriers?

truly to the question at hand, how does one manage to have a good death?

what is a good death?

perhaps it is as unique as to the ones who are dying.

perhaps there really isn't a common concensus.

perhaps it really is about only managing the physical symptoms with pervasive clouding.

i know what would be good for me; not so sure about joe.

i'll let you know after we've talked.

leslie

req_read · Feb 18, 2007

Good morning Leslie…

I read your post last night but my brain could not handle it. Re-reading it this morning I’m doing better… I think.

You are making very good points. True spiritual awareness is not achieved by the simple expedient of dying, although the process certainly seems to lead in that direction. True spiritual awareness is so profound that we should be wary of using the term lightly.

Your use of the term vulnerable is, I think, apt. It is an accurate description of the state of mind… or perhaps, state of being… that often manifests in the latter stages of dying. It also implies that a willingness to be vulnerable expedites navigating the latter stages of dying process. Whereas resisting being vulnerable… fighting against the flow… generally results in angst, fear, unconsciousness etc.

I generally think of good death as one in which the person experiencing it goes with the flow so-to-speak… as opposed to fighting, kicking, screaming, denying, lashing out etc. And I don’t mean giving up… I mean gong into it willingly, with a sense of wonder and awe.

Your list of paradoxes makes a person stop and ponder; e.g. being vulnerable yet detached.

The Self seems to be multi-faceted. There is a part of the Self capable of detaching from and observing the Self. The Self can watch its Self. Perhaps that is the real Self observing the ego-driven Self… I don’t know. I only know that I have experienced it… and have heard it referred to as the “witness.”

As for your question: “how does one transcend their religious inclinations, and die w/o any preconceived barriers?”

Hm-m-m-m. Good question. The short version for my answer to that it- I don’t know. But let me share a couple of observations and ask if yours are similar.

I noticed, with a few different dying folks, that the religious training they received in childhood stuck… whether they wanted it to or not. A friend of mine calls herself a “recovering Catholic.” I have known some dying people who might be in that same category; i.e. were trained in the Catholic tradition but departed from it in their adulthood. However, while dying, the original training almost seemed to take over… to override the beliefs they worked at developing in adulthood. That is kind of a scary thought really… that you cannot undo whatever you happened to have been taught in childhood. Although it does seem to go along with other theories of growth & development; e.g. that what children are taught at an early age is difficult or impossible to un-teach at a later age.

I prefer to think we are capable of re-programming our Self... but have seen evidence to the contrary in some patients. To be perfectly frank, it scares the ___ out of me!

What have been your observations and what are your thoughts on this? (Leslie & everyone.)

Michael

leslie :-D · Feb 20, 2007

i'm sorry it took so long for me to respond.

my schedule has been hectic as i've been working peds cases and i'm still not used to it.

so now, i'm trying to incorporate ways to get back on track.

dang michael, the short of it is, no, i don't think people are easily reprogrammed.

i agree with you in that whatever it is we are taught in early childhood, sticks w/us.

not the case for all of course: i was taught a myriad of emotionally and spiritually powerful concepts and i rejected every one of them.

but at the bedside, i see so many struggling with their faith and what it has imposed upon them at the end of their life.

if i could bring peace to that one aspect of dying, they'd be well on their way to what i perceive as a good death.

but the concept of God, Jesus Christ particularly, can and does impede the road to growth and self-discovery at the end, because of the aforementioned barriers i mentioned.

often, if the pt doesn't use their own pastor, i enlist one who isn't "by the Book" and converts religiousity to spirituality.

as a matter of fact, much emphasis has been put on the hiring of pastors, to try and ensure that there is a one-size-fits-most, no easy feat, i assure you.

anyway, i'm sorry but my brain isn't functioning fitfully but i felt inclined to respond to your post.

a 3yo with AIDS died today and the cries are still echoing in my mind.

i'm dreadfully distracted but in this little child's dying process, i had to ensure he was baptized, much to the chagrin of a family member, and there was much religious chaos throughout.

yet this case's experience has only served to fortify my thoughts as to the strife one's religion can create at the end of life.

if people (gen'lly speaking) could just draw from their resources within, much more would be at peace with the world.

leslie

req_read · Feb 20, 2007

Oh Leslie... you've been hurting... feeling a child's hurt.

As you know, perhaps THE most significant, culminating conclusion I have reached in my personal quest for truth is that all humans are connected… are, in fact, one. Sometimes we see and experience events in this world (the “world of folly”) that simultaneously reinforces and challenges this conclusion.

Our spirituality and our connection to other human beings is felt more than rationalized. Few cam deny feeling that connection when in the presence of a hurting child. When a child hurts we feel it… and we sense we are connected somehow. Our intellect cannot quite figure out how, but we feel it just the same, so the intellect wonders, “Hm-m-m-m… maybe there’s a connection here.”

The adults who cause the child’s pain are usually wound up in their own agendas, oblivious to the effects of their own acts… and we hope we are not connected to them.

But I sense that we are.

Being aware of the pain we cause (to ourselves and others) is key to self-awareness... to living consciously. Owning up to the pain we cause (sometimes with the best of intentions) is not easy.

When working in ICU one night, after all the patients had been tucked in & the lights were turned down, there suddenly came a yelling from Rm-2. “Hey! He-e-e-e-ey!!!.” It was not my patient but the other nurse & I both rushed in. There we saw the patient, an elderly gentleman, pulling on his catheter. Every time he yanked on the thing he would yell, “Hey!” We tried to explain that he was doing it himself… but of course he would have none of that. He was convinced his discomfort was due to the diabolical work of some malevolent other.

Similar scenes are common for nurses of course, but this one has stayed with me as a metaphor of human behavior. In a way we are all yanking on our own catheters… yelling and mad as hell… not realizing we are doing it to ourselves. Becoming aware… conscious… means facing up to the possibility that we may be doing it to ourselves. Only then do we begin to think, “Gee… maybe I should quit yanking on this hose.”

I recently heard a pundit on cable news refer to what he called, “the law of unintended consequences.”

We are inclined to focus on our good intentions while studiously ignoring the obvious effects of our acts. And even when someone brings the obvious effects of our acts to our attention we are inclined to blame instead of own… to make excuses and rationalizations instead of saying, “Woops! I think I made a booboo.” And when all else fails the ultimate blame-shifting technique is to justify our acts by quoting scripture. In that way we can shift the blame to God… the final repository of all blame.

Again I assert that self-awareness (looking within), as bitter a pill as it may be to swallow in the short run, yields better results in the long run.

Michael

river1951 · Feb 20, 2007

Leslie- that is soo hard. I will hold you in my heart and thoughts.

I agree self awareness is the way to peace, but I see that for nearly everyone, self awareness is depressing, being human we are all horribly imperfect. Self awareness forces us to look at our own imperfections. How can we move on, when we've done such bad things? This can stand in the way of our patients moving on. It does not seem satisfactory to ask people to forgive themselves; most seem unwilling to accept imperfections, thuis denying their true nature. And I may add, making it difficult for them to pass through till the next phase.

At this risk of seeming too simplistic I believe helping our patients accept themsielves starts with our acceptance of them and believing what they say they need. If we are able to accept them as they are, I believe it makes it easier for them to share their needs, etc, etc. We have used ceremonies of forgiveness to assist patients at times. Does anyone else have other things they have found successful in assisting patients to accept themselves and their place on the wheel?

River

req_read · Mar 6, 2007

Self-awareness does tend to yield better outcomes during dying process than self-delusion or self-deception. But you are quite right… because self-awareness necessarily involves being aware of one’s own short comings, it is a hard pill to swallow. Of course success is more likely if one works on it all along… throughout the course of one’s life, rather than waiting until the last few weeks or days.

I wonder whether depression, one of the most common maladies in our society, may have some association with a general lack of self-awareness. It would not surprise me if some future study demonstrated a connection between pouring time & energy into fabricating our social masks and an inner sense of despair. Wise men/women tell us that the key to life is learning who we are. The majority nod in agreement… then go right back to polishing their mask.

It occurred to me early in my hospice experience that while thinking and learning about dying is difficult, it is even more difficult not to. The same is true of self-awareness. Self-awareness is tough… darned tough. The only thing tougher is not being self-aware.

These are the kinds of things that a serious study of dying process might shed light upon. Dying process could be an invaluable source of information for all of humanity… if anyone bothered to study it that is. But then almost no one does… even among those who see it on a regular basis. Isn’t that curious? Why do you suppose that is? There is almost nothing in the human experience so common yet so mysterious as dying process.

Michael

req_read · Mar 7, 2007

I notice that the sticky: “End-of-Life Care Curriculum for Medical Teachers” does not allow for anyone to post a response. I suppose that fits in with the usual expectation that nurses shall not comment on the affairs of their betters (docs & med schools.) However, I have never been good at staying in my proper place, especially now that I interact with more physicians as a patient than as a nurse

The material (“End-of-Life Care Curriculum for Medical Teachers”) is illuminating, although probably not in the way its authors suppose. It is however, typical of what is going on in med schools these days. It does show some promise for relevant future study in as much as it demonstrates a glimmer of recognition of certain key concepts (see module 7: Psychiatric Issues And Spirituality)

Point-by-point analysis of this material would be unacceptably time consuming for this forum… not to mention- boring. But generally speaking its flaws include all of the usual suspects.

First, it assumes physicians know more bout dying process than anyone else. That assumption is flawed… in so much as it is wrong. Again, there has never been a systematic, comprehensive study of dying process. Claiming to be expert in something you have never studied is at best presumptuous (a posture physicians are wont to assume) and at worst, arrogant and harmful to patients.

Any serious study of dying process must begin with- a) the patient/family, and- b) the clinicians who are there with them. Generally speaking, doctors are not “there with them.” The trained professionals who are (“there with them”) are hospice nurses. Therefore, any study that is not based on input gleaned from trained hospice nurses is flawed. Asking a doctor what it is like to die is like asking a husband what its like for his wife to deliver their baby.

But as usual, the most obvious and glaring deficiency in this material is its use of the term “end-of-life-care.”

Unless you have absolute proof that death ends life (which you don’t) you have no right to call it “end-of-life.” Doing so tips everyone off to the fact that you don’t know what you’re talking about.

One of, if not THE, most mysterious question confronting humans is whether or not we (life) transcends physical death. Religion is one way in which we attempt to answer that question. In its most basic form, that question comes down to “Yea” or “Nay.” Do we survive death? Yes or No? Which is it?

When you use the term, “end-of-life,” you are, in effect, giving your answer to that question. You are saying directly… with no beating around the bush or sugar-coating whatsoever… life ends at (physical) death… period.

“End-of-life” is not a neutral statement. It is, in effect, a statement of religious doctrine… a statement of personal belief. It also happens to be contrary to the beliefs of roughly 85% of the human beings on this planet (the ratio is probably higher among those humans who are not on this planet.) So ironically enough, the medical field (including official hospice “leaders”… using the term “leader” very loosely here) is out of sync with the overwhelming majority of its clients.

As stated, the material in the “End-of-Life Care Curriculum for Medical Teachers” is illuminating. It shows where the science of medicine is at on the learning curve regarding dying process. Specifically, it shows that medical science is at about the same point Benjamin Franklin was (in the study of electricity) when he went out and flew his kite in a thunderstorm. The truly frightening thing is, medical science (med schools, docs, etc.) think that they are leading in this study. Even more frightening is the possibility that they may be right.

Michael

river1951 · Mar 7, 2007

At some point the doctors have to give it up! They don't know everything and for some MDs (perhaps many) that is a difficult realization- one never addressed in some cases. I do find, as a hospice nurse that the docs many times turn my requests back on me, as in "Do whatever you think will help."

This is not always a good thing, I know I don't know everything, and sometimes really need help figuring out what to do, but usually, I call another hospice nurse first. I have learned after years of calling doctors, that I had better just have a plan they can sign off on.

Looking for the doctors to understand hospice, unless they are here with us in hospice seems futile. I remember an episode of MASH where Dr. Winchester tried to find out about the afterlife by interviewing dying patients and then by taking apart all the jeeps in the motorpool in his frustration. I am not ssure where MDs are on this entire issue, even if they are good about referring to us, they may still have not had THE conversation. And many times when I call them, there is a certain irritation present, verbalized by one doctor as "That's why I called you people so you would take care of this for me!"

I don't know how many other nurses have had this experience, or if it is only our area.

Thanks,

Beki

req_read · Mar 9, 2007

Beki…

I don’t think it is just your area. Follow the money.

Docs are reimbursed largely on a per visit (in office) basis. No office visit = no reimbursement. When the patient can no longer make it to the office that often corresponds with the point at which doc is willing to certify terminal status. If you are having trouble getting a patient certified, tell them to stop going to the doctor’s office. Voila! Certification will soon follow.

Where I grew up the lucrative jobs were working on the line at the chevy plant. It was brutal, mind-numbing work, but those guys made the bucks! They also had more paid vacation & benefits than anyone else in the area… not to mention cabins up north, complete with boats, snowmobiles & motorcycles.

That business model has taken over medicine… and is well on its way to taking over hospice.

Time is money… but there is a problem. Rookie nurses tend to be hopelessly idealistic. They assume “caring” means spending time with patient/families. How quaint… how “retro.”

It was stated earlier (somewhere in this thread) that abused children typically defend their abusers. Why!!?? How could that be?

Simple… and you don’t have to look any farther than your own field; i.e. hospice.

If caring means spending time, not spending time = not caring. Obviously, the business people have to do a little re-defining of terms before this can become lucrative. Little by little, not spending time (caring) gets replaced with the concept of non-interference… and rushing through visits gets replaced by the concept of “expertise.” What goes in as a rookie wanting to “be with” patient/families comes out as an “expert” who can adjust a med regime in two shakes of a lamb’s tail. Cha-ching!

And of course if anyone dare question this methodology the first to defend it are the nurses (abused children.)

As Beki warns, self-awareness is depressing. Then again, it is the only route to making things better; i.e. the only thing worse than self-awareness is not being self-aware.

Have a lovely day.

Michael