Managing symptoms for a ï¿½good deathï¿½

BeExcellent · Feb 12, 2007

Leslie, yes, affirmative and right on! The issue I have been skirting than comes up with Michael's comments. My sense tell me something or someone, is helping the pt. Who knows. But I sense people often being mercifully, gently and lovingly guided through. Maybe these guides can also help pt adjust their deaths. They will themselves with this help to live to an event, an anniversay or as leslie said, until everyone steps out of the room. I think the guide may be perceived by the pt in the form that is the most comforting and the least scary to the pt. Family members that have died and young children come right to mind. All hospice nurses have had pts address themselves to someone we can't see. I once sat down on a chair and had an alarmed pt tell me, "You are sitting on the little girl!" These guides could be real spirit creatures or perhaps visions sent by God to bring us comfort and hope. I believe they are an outworking of God's mercy for people. Of course this doesn't happen in all cases and sometimes the pt is terrified. (I see terror different than terminal restlessness. And I treat them different.)

Psychotherapy would say all hallucination and dreams of from within ourselves. The challenge for us is to let the process be the pts process. I had a young man dying and when i came to visit him he whispered. "I am Lutheran." I thot that of some importance since the young man had not expressed any beliefs at all, until his partner told me the sitter for him that day had spent the day trying to "save" the pt. I am not judging that action. I know it was well intended, but pt didn't like it. Is all that too out there?

river1951 · Feb 12, 2007

No, no, none of this is too way out there. They are the experiences we all have on a day to day basis. This is the meat of what our work is- excuse myself to that person who thought we were all nuts.

I want to understand things I'm probably not meant to understand- my husband always tells me not to worry, I don't have to understand, I just have to believe- that's not the problem....

I too, had an eperience with my grandparents that has made me know all my life that a guide comes to help.

I wonder about my poor friend Audrey, did she get a hand up or out. Geez, I hope so...

Well, Michael, I think this was the discussion (all the replies above) that you wanted to have!

What I want to know how we can best facilitate our patients to do what they need- I think there is probably not one right answer, we must have that developed sense of intuition to read between the lines- I don't mean in the way someone a little better than I would decide what I needed but in a collaborative way with the patient to listen, feel and see from them how to proceed- and I'm not going to try to write that sentence again either!

So, carry on the great work!

River

BeExcellent · Feb 12, 2007

Nice to hear from you River. Thank you for the support. These issues are uncomfortable because they are personal and impossible to prove or disprove. At the same time, we want to help our pts and as we do so, we help ourselves. What I have learned is that that unlike parts of the birth process, death can not be controlled is the way our culture looks at control. We can be open, accepting, inviting, accomodating and artful but not controlling. (Hi to all thread readers. Jump in discussion. Water is fine.)

req_read · Feb 12, 2007

Hi River!

Yes, this is the discussion I wanted to have all along.

After I lost my eyesight I became very isolated. I wanted to connect with other hospice nurses. I spend most days in my own home… home alone. My computer is my access to the world. With it I connect to people all over the world… taking trips without ever leaving the farm.

I have been working on this post (below) all morning and have finally finished… so here it is. Pardon me if it is slightly off the current track.

I sometimes have gotten the impression that some posters are suspicious I may be a bit of a proselytizer; i.e. pushing my “religious” beliefs on patients. Perhaps that is just my paranoia… but like someone once told me, “Just because you’re paranoid doesn’t mean no one is out to get you.”

Actually I am put off by organized religion in general… and certain ones in particular make my skin crawl. I sympathize with Nietzsche on this point.

“After coming into contact with a religious man I always feel I must wash my hands.”

Friedrich Nietzsche (1844–1900), German philosopher. Ecce Homo, “Why I Am a Destiny” (1888).

One of the very first hospice patients I ever had struggled mightily, trying to undo the damage of her own religious training (worrying about Hell etc.)

I have heard it said that there are basically just 2 emotions; 1- love, and 2- fear… and that all other emotions are merely some admixture or variation of those two. It is an intriguing concept, but suppose, just for a moment, there may be a sliver of truth to it. Now tell me… are most religions driven by Love or Fear? Think about it.

As a rule, religions spring from the teachings of history’s great spiritual teachers. Unfortunately, those who follow do not always have great insight into the true meaning of the teacher’s words. Instead, religions are subject to getting off track and devolving into organizations devoted to gathering political and financial power for their leaders.

Not that religious leaders are bad people, it’s just that they ARE people… and people are subject to human foibles.

I have noted that there are 2 primary contributing factors to dysfunctional behavior; 1- the urge to control, and 2- the urge to feel “better than.” Religious leaders often fall victim to both urges… and use both to further their personal (human) agendas. And it usually comes down to simple marketing strategies.

How do you get people to join your group? In other words, how do you get people to give you money and the weight of their political power?

First, you convince them that something really bad will happen if they don’t join your group… like going to Hell for instance (control them with Fear.) Then comes the coup de grace… you convince them that if they join your group they will receive special favors from God (they will achieve “better than” status.) Once you get them into your group you maintain control by patting them on the head and telling them they are “better than” those other misguided souls out there (the Muslims, the Jews, the Christians, whatever…) and every once in awhile it’s a good idea to stick little barbs of Fear under their fingernails lest they stray from the flock. And of course the bigger the flock the more political & financial power for its leaders; i.e. earthly power. And somewhere along the way, serious spiritual study seems to get lost in the shuffle.

“It is not God that is worshipped but the group or authority that claims to speak in His name. Sin becomes disobedience to authority not violation of integrity.”

Sir Sarvepalli Radhakrishnan (1888–1975), Indian philosopher, statesman.

But here’s the kicker. Those who deal with the dying (like hospice nurses for example) begin to see very clearly that people actually do have a spiritual aspect to who they are. Humans are not just bodies. So the question becomes, how do you separate dogma from fact? The way I have approached this question is to look at outcomes… empirical evidence. In other words, what thinking patterns/belief systems yield the best results?

When we die does “better than” theology produce optimum results? My observations of dying people would indicate- No… absolutely not.

Does control oriented theology produce optimum results? Again, direct observations of dying people indicate that control is a bad idea… it just doesn’t work… it yields poor results. In fact, it tends to backfire and bite its owner in the bum.

What I have observed yields optimum results is open-mindedness, nurturing a loving attitude towards others and the conviction that we humans are all connected; i.e. are One. Time and again I have seen that those who think along these lines die better than those who stubbornly cling to base urges to “feel better than” others and to exercise control. These are not my religious beliefs, they are what I have seen in the field. It is outcomes based data… which is why I keep asking y’all what you have seen in the field… so we can compare notes. Hospice nurses see, first hand, raw data. What is that data?

When I say that the ultimate goal is to die consciously, what that means is: The person who is most conscious has the widest array of choices available to them. To the greatest degree possible they make their own decisions; e.g. whether to go, whether to stick around awhile, etc. My goal is to encourage dying people to maximize their choices. Then sure enough, someone comes along and says, “You are limiting people’s choices by enabling them to maximize their choices.”

Huh? Did I miss something somewhere?

My biggest challenge as a writer has been to acknowledge the reality of human spirituality without injecting anything that could be construed as religious doctrine/dogma. It took a tremendous amount of thought and work, but I think I have pulled it off fairly well... as measured by the fact that my Christian readers think my books reflect Christian beliefs, my Buddhist readers think they reflect Buddhist beliefs, and so on. I strive for a perspective of universal spirituality… because I have observed a universal spirituality in dying humans (the raw, objective data.)

You mentioned (BeExcellent) that a pt of yours said, “I am Lutheran.” I always get a kick out of someone saying that sort of thing; e.g. introducing their self as, “I am Christian.” I always feel like responding, “Nice to meet you… I am human.”

What is sometimes implied when a person identifies their self with a doctrine is: “I am better than. Are you better than too? Or are you one of those unclean others… you know, the ones outside of our special group?”

The empirical evidence suggests that those who expect special favors are invariably disappointed; i.e. they die harder than those not saddled with this expectation. Therefore one could reasonably conclude that “better than” theology is flawed.

Here is a concrete example: During the Terri Schiavo debacle I saw a preacher on the evening news declare, “People of faith do not fear death.”

Baloney! Empirical evidence shows quite clearly that everyone fears death. Fear is an integral component of all transitions, just as anger is an integral component of all grief. So when someone sets their self up to fail by imagining they will have no fear when dying… and then they do (much to their horror) they inevitably begin to doubt their own “faith.” Then they struggle. Sometimes they even begin to wonder if maybe they won’t go to Hell after all (their exclusive, punitive dogma comes around and bites them in the bum.)

Empirical evidence shows that those who realize they are human (are conscious of who they are) and expect to experience normal human emotions (including fear) deal with dying better and work through it quicker.

A measure of a person’s self awareness and/or spiritual awareness is the degree to which they grasp the realization that being “better than” another person is literally impossible. We are One. One is not more than one. One is not less than one. One is one… period. No one is better than anyone else. Then again, no one is less than anyone else either. One is one… period. Dying people who grasp this concept do better… period. That, from my experience, is the raw, objective data… an outcomes based conclusion.

Some assume that any belief is just as good as any other belief. Sorry, but that ain’t true. If you believe you are better than you will suffer more.

Then again, it is quite true that everyone has a right to their own beliefs. If you insist on feeling you are “better than,” that is your right… but the empirical evidence shows you will suffer more because of it.

I propose that it is the role of hospice nurses to be aware of what works... what causes more suffering versus what causes less suffering… and gently, carefully, delicately attempt to herd their clients into the least painful, most graceful chute.

Of course you can’t make them.

There is an old cowboy saying: The best way to get a mule into a corral is to leave the gate open a crack and let him bust in (on his own.)

Some doctors are like that. They always have to be “better than.” If you (the nurse) think what is best for your patient is option D, then you suggest options A, B, C, E and F to the doctor, knowing he will want to think of something brilliant that you did not. After all, he’s the doctor (which by his definition means he is smarter… better than… you.) The doctor will then suggest option D and go away thinking how clever he is. You did not challenge his imagined “better than” status, but managed to get what the patient needed.

Of course the ideal situation would be to have doctors who are conscious of who they really are and could interact with nurses on an adult-to-adult basis. But don’t hold your breath.

Hospice nurses should know what works and what does not. We are expediters, not controllers. Facilitators, not traffic cops. At the post-funeral gathering of a patient of mine the son told me that, in retrospect, he realized I had been gently herding them all along (the patient died consciously by the way… very beautifully.) He meant it as a compliment… and I took it as one.

Patients have every right to suffer if they are so inclined, but there are times when an artful dodger… an experienced, skilled guide… can get them better results than they would have achieved on their own.

Michael

BeExcellent · Feb 12, 2007

Yup, Buba that's it. I don't want to be called a guide, though. I will leave that title to who or what-ever is with the pt during those final days. I think I want to be a hospice midwife. (Looked up midwife in dictionary. Mid means "with" and wife is an archiac term for "woman". Using that I could be a "midmorte").

Mohandas Ganghi, a Hindu said:" I love Christ, but despise Christians because they do not live as Christ lived." He also said (paraphrase)that if Chrisitians lived the teachings that Christ taught in his Sermon on the Mount there would be peace throught the world. So you are in good company, Michael ,on your reflections about religious hypocrisy. To have a time out to chew over these things is right and good.

My hospice is very generous with vacation time. This week is my week to be kicking it. Some fun, some reflection, lots of reading, writing and even a massage. Houston has cooperated fully by having steady rain that gives me a clean conscience to stay in and reflect. As we continue this discussion, I want to thank all who have posted the last few months. I would be proud for any of you to be my midmorte. (Except maybe the crabby Republican. Well her too. if she can put that aside and be a midmorte.)

river1951 · Feb 13, 2007

Well, Michael, I'm glad you have time to write. I for one, enjoy reading it- am too right brained myself to get the words straight. But I'm glad the rest of you can. I sure missed a lot when it was the weekend- this site won't let me check in from my home computer-

Our medical directors' mom is going to be admitted tomorrow, so I guess it's just our turn in the barrel.

Well, Leslie- take good care of you this week-

later

req_read · Feb 13, 2007

Excellent…

“Midmorte” aye? He-he-he… that’s pretty good.

The analogy to herding is apt. If you have ever herded cattle or horses you would know what I mean. It consists of paying acute attention to the most subtle movements and then making counter movements of your own. You never get close… it is all done at a distance. It is essentially a dance form. And of course if the cattle or horses you are trying to herd make up their mind to go nuts and scatter there is nothing you can do to prevent it… since the average cow or horse is a whole lot bigger than the average human and can run you down any time they choose. The art of herding is a ruse.

A colloquial term for cowboy is waddy. So I guess you could be called a waddymorte. Or would that be a mortewaddy? It sounds more sophisticated with a French pronunciation; mor-tay’-wa-dee’. When I am dying, if two people come in and one says, “I’m the end-of-life nurse,” and the other says, “I’m a mor-tay’-wa-dee’,” I think I’d pick the wa-dee.

You mentioned (a few posts back) that some families are like herding cats. Herding cats is an hilarious concept! It cannot be done. With families like that about the best you can do is provide plenty of meds and hope that when you aren’t around the family will give some to the patient too.

Enjoy your time off. I can’t believe how hard a lot of you guys have to work these days. There literally is no time to think. In our production-oriented society working… the physical act of working… is held in high esteem, whereas thinking is suspect… denigrated even. If you ask someone, “What are you going to do on your day off?,” how often do you hear them reply, “Think. Today I am going to sit around and think all day long.”

Thinkers are thought to be lazy.

Take doctors for example (it is fun to pick on doctors… they are such easy targets.) Doctors like to think of themselves as “intellectuals.” Ha! That’s a good one!

In truth most of what doctors do is based on memorization. They have to memorize a hundred and twenty thousand algorhythms, signs & symptoms, lab results etc, but the majority of their routine thinking patterns are simply recalling memorized data. I’m sorry, but that is not intellectual. If the ability to memorize data were intellectual then my poor, old, beat-up, obsolete computer is a bloody genius! Being intellectual means to take old data and do something new with it… something creative… take it to a higher level. From that point of view your average doctor doesn’t know enough to come in out of the rain. In there defense however I would say that they don’t have time to actually think… at least not in a creative, contemplative way. They are just plain too busy

But being too busy is largely their own darned fault. The reason they tend to be so busy is because they are nearly all addicts… addicted to work… addicted to the 2 prime causes of dysfunctionalism; i.e. the urge to control and the urge to be “better than.”

Of course you can control nothing and it is impossible to be better than, so when MD’s arrive at their dying process/life review it is invariably a bit of a shock… when they are suddenly disabused of all their cherished self delusions (delusions of control and being better than.)

Unfortunately, many nurses are now falling (even jumping) into the same tar pit the docs have been mucking around in for so long. It sometimes seems like there are just 3 kinds of nurses nowadays; 1- nurses who want to get out of nursing, 2- nurses who have gotten out of nursing, and 3- rookies. Interestingly, one of the most popular ways to escape nursing is to go back to school and get advanced nursing degrees. Then you can go into administration and thus, get out of nursing. As an administrator you can make life miserable for all the nurses still nursing, but not have to endure it yourself.

Many of these people (nurse administrators) get suckered into coveting the “better than” status docs have perfected. The thinking goes something like this, “Gee… docs are better than, so if nurses are going to be better than too, they will have to be more like docs.” Which is kind of like saying, “When I grow up I want to be hopelessly self-deluded and addicted to a fantasy too.” And all that is required to achieve it is to memorize one hundred and twenty thousand algorhythms, signs & symptoms, lab results etc. So now virtually every nursing specialty has its own official association (administered by nurses who have escaped nursing) which creates a certification test that basically comes down to seeing just how much trivia a hard-working nurse can actually memorize in her spare (ha-ha) time.

Somewhere along the line the role of nurses has gotten lost in the shuffle. Nurses are supposed to “care.” They are the human contact within the cold gray walls of our uncaring healthcare system. They are the respite in the storm. Think about it… when was the last time you (a nurse) went in to see a patient who was scared out of his wits and he turned to you and asked, “So, how much trivial crap have you memorized?”

Of course it is hard to test for caring. How would you do that? With a multiple choice question maybe? How about this…

How much do you care? (Pick only one.)

a- A lot

b- A little

c- As much as I can on good days.

d- I don’t

The real value of nurses is almost impossible to measure or test for… although if you happen to be a patient it is clear enough.

Michael

“To appreciate nonsense requires a serious interest in life.”

Gelett Burgess (1866–1951), U.S. humorist.

"

We sometimes congratulate ourselves at the moment of waking from a troubled dream; it may be so the moment after death."

Nathaniel Hawthorne (1804–64), U.S. author.

BeExcellent · Feb 15, 2007

Phew, another hard day of vacation. Napping, watching movies late, not traveling with the cell phone, sweet. Balance is the key to staying sane in this business. I can't herd dust bunnies much less cats when I am over tired. I finally got around to reading the article through that precipitated this thread. It wasn't so bad..except I rarely recommend support Ambien for my pts, besides it isn't on our formulary.

As for physician, like nurses they come in all flavors. People drawn to hospice, I find, are usually there for some positive reason. Most of us are working on our own deep issues, if even on an unconscious level. Real money is made in other areas of health care. Have to scoot off and get rest. I might have to go bead a necklace tomorrow.

req_read · Feb 16, 2007

Yes… people involved in hospice work are usually drawn to it. To one degree or another they usually have a passion for this kind of work. Therefore hospice nurses are often exceptions to rules affecting nurses in general. There are exceptions to every rule of course. Then again, while there may be ten thousand exceptions, ten thousand is still a minority.

The nursing shortage is real… and so are the causative factors behind it. It is no fluke… no coincidence… ten thousand exceptions not withstanding.

On a recent visit to the dentist there was a student there from Kurdistan. She was very bright and well trained. On a recent visit to the doc there was a nurse there from Russia. She was very bright and well trained. Earlier in this thread there was a post from a student nurse in the Philippines who said her class was studying palliative care (and she spoke English.)

Get the picture? See the trend? You can be replaced. Especially if delivering “good palliative care” requires little more than memorizing the PDR.

In a sense, the “nursing shortage” is a misnomer. Actually there are plenty of nurses around… its just that an awful lot of them are no longer nursing… mostly the middle-aged to older nurses… you know, the ones with all the irreplaceable experience. I cannot count the number of times I have been, for example, shopping somewhere and mentioned to the shop owner that I am a nurse and she replies, “So am I.” Then she adds that she left nursing several years ago. She starts to explain why but then stops and says, “Well, you know… you’re a nurse.”

But let me switch gears just a bit and get back on the track of “good death.” First however, let’s consider a couple of basic definitions:

From: The American Heritage Dictionary

Palliative - Relieving or soothing the symptoms of a disease or disorder without effecting a cure.

Cure - Restoration of health; recovery from disease.

If one thinks of dying process logically… realistically… then one must assume it has purpose… that it leads to something else. If, for example, a patient has unresolved life issues and you (hospice nurse) assist that patient in resolving those issues and then s/he moves on to the next phase of life consciously… looking forward to it… then your intervention was, by definition, “curative,” not “palliative.”

If, on the other hand, you think that death “ends life”… then the best you can hope to accomplish is to reduce or perhaps even eliminate your patient’s pain/angst… at least while they are still here (on Earth.) In that case I would suggest that you are setting the bar pretty low. In that case, familiarity with the PDR is about all you will need and “palliation” (not “cure) is your ultimate goal.

Think of it this way…

What happens if you have a total bladder outlet obstruction but your kidneys go right on producing urine?

Answer: Nothing good.

What happens if we cure heart disease, cancer et al and people stop dying, but more people keep right on being born?

Answer: Nothing good.

Planet Earth is a finite container. You can only cram so many bodies onto this bus. Death has purpose and value… it is like a bladder outlet. Plug it up and you’ve got BIG trouble!

Death has purpose and value. We were not meant to stay here permanently. First of all, it is impossible. Second, if you really think it through, not “dying” would be flat stupid. It would be contrary to the laws of “life”; i.e. continuously growing… moving on to the next challenge. It would be like declaring, “I am going to stay here in kindergarten forever! I like it here… and I cannot imagine anything better... therefore there must not be anything beyond this point.”

Dying process has purpose and value. View it from that perspective. Bringing that attitude to your patient/families helps them go on “living”… helps them understand life (and death)… helps them prepare for life’s next adventure… helps them find a “cure: i.e. Restoration of health; recovery from disease.”

Caring for the dying is not just “palliative.” That word has become an excuse for not doing more.

The founders of hospice thought long and hard, and they came up with an absolutely brilliant term- “hospice.” It is non-threatening, non-secular, warm & fuzzy and is now almost universally recognized. It is virtually ideal, but ever since then neophytes have been deluding themselves into thinking they can think up a better term. Why they would do that, I have no idea (perhaps because of an urge to feel “better than.”)

Someone thought to replace “hospice” with “palliative care,” which was evidence of a paucity of understanding on their part. But worst of all… oh horror of horrors! Along came some blithering idiot with the term “end of life care.” Whoever thought that up should look for a different line of work. The term “end of life care” reflects a level of understanding of dying process that hovers at or near zero. The truly shocking thing is, it seems to be spreading… like a disease. To quote a line from one of Lyle Lovett’s songs: “You catch it on your fingers and it just crawls right up your sleeve.”

And here’s the really telling thing about it. Have you ever heard of anyone using the term “end of life” when speaking directly to patients? Again, there may be some exceptions, but I suspect that most hospice nurses, even if they could not articulate why, would sense that to be a real bad idea. In which case, why use it at all? Is it okay to use the “n” word when speaking to African Americans? NO! Then is it okay to use it when speaking about African Americans behind their backs? NO DAMNIT!

Hospice care SHOULD NOT be about covering up symptoms with drugs… unless there is no other choice of course. It SHOULD be about assisting people prepare for the next phase of life.

Pardon me… I’m a little on edge this morning… I have a toothache. Reckon I’ll have to go see that little Kurdish gal down at the dentist’s.

Michael

leslie :-D · Feb 16, 2007

preparing one for the next phase of life, is a logical sequence.

however, one's religious views would greatly alter the preparation.

it seems it's never enough being a spiritualist.

yet if one claims to be spiritual in nature (as opposed to religious), preparing someone should come naturally-nothing that could be taught or demonstrated through words; it's all an energy form.

again, it's felt.

spirituality reaches the inner fires of your core and spreads from the inside out.

religion is taught and memorized.

and it propagates from the outside in.

to me, it would feel more natural being spiritually attuned but that is certainly not the reality of our society.

we are a Christian culture who has to fear damnation or even fear eternal salvation-either way, it is fear-based, even when rejoicing.

my point being, how does one prepare one for the next phase of life when chances are it will be borne from a foundation of Christianity?

with all due respect, i'd rather believe in the concept of nothingness if i can't have a hospice nurse who understands and embraces the mere existence of spirit.

leslie

river1951 · Feb 17, 2007

Gee, I only know a few hospice nurses who are religiously rigid. I think most of us have seen too many off the wall things to swallow the party line as it were. Consciousness itself is an intangible. I don't understand why we talk about end of life at all. I'm so tired of everyone being afraid to offend any non-believers that even though we intuitively know we go on, we can't say it because we're afraid someone will sue us.

Earth probably is full Michael, we just can't see them from this dimension!!

River

leslie :-D · Feb 17, 2007

i don't know river.

i happen to think there are many religious folk out there.

what supports my hunch is the lack of response this entire thread has received.

while i try not to be presumptuous, i don't understand why there has been such little interaction in this thread and so, i'm led to believe that many are uncomfortable in their views of spirituality....which has been the focus, vs. religiousity.

leslie