Care at the Time of Death

i've only read 2 of walsch's books.
both penetrated the depths of my being.
for me?
i don't give a darn who considers what, authentic.
i agree that the listeners' perceptions are what define one's truth.
as you know, i listen to my internal whispers.

it's unfortunate you didn't like the link re: palliative care.
it talks in detail, about its funding and reimbursement policies, if you get curious.

and allow mystery, i was genuinely surprised at your perception of events...
yet there's nothing i can do about that.
be well.

leslie

Allow Mystery…

I apologize. I really have no desire to talk over anyone’s head. I think of myself more as a “splainer” (someone who explains things) than as a writer per se.

Recently I read a book (on tape) written by a professor who at one point made a comment about “being deliberately vague so as to impress.” It was a good book and very informative on the whole, but that actually was part of his writing style (being deliberately vague so as to impress.) Every once in awhile he would put together a sentence or two, loaded with twenty-five dollar words and vague allegorical connotations, the meaning of which (if there was any) I doubt even he could explain. I could just picture him pulling that same stunt while teaching his classes.

True writers can take almost any subject and piece it together in such a way so as to pique the reader’s interest. My style is really quite different than that. First of all, I cannot make myself write about something unless I have a genuine, personal interest in it. I could never be a journalist. Chances are, if an editor told me to go out and do a story on … whatever… I would say, “Nope, not interested.” And if I am interested in a subject, my first inclination is to reduce it to its simplest form… to see it and explain it in such a way so that it can be understood by virtually anyone.

For example: I always wondered about Einstein’s theory of relativity. I came across a book by Bertrand Russell once, the title of which was, “Relativity Made Simple.” I thought, “Great! Simple is my cup of tea.” But when I started to read it, it was all math! HUGE, lo-o-o-ong equations. Simple? Ha!

Then I happened to turn on Nova (PBS) and lo & behold, there was a guy explaining Einstein’s theory of relativity in language I could understand.

He said, Einstein was sitting around thinking what it would be like to ride on a beam of light. If, for example, he was riding on a beam of light that came in the window of a room, went through the room and then out a window on the other side of the room, what would he see happening in the room? Answer – nothing. It would be like the world’s fastest hi-speed camera. All action would freeze… everywhere he went he would see no physical motion. The conclusion being… the faster one moves through space the slower time elapses, and if you move fast enough (through space) time stops. Now, he thought this was odd because, he wondered, if people experience time at different rates of speed based on how fast they are moving through space, how could they coexist. So he sort of through up his hands and concluded, well, they must be coexisting relative to one another… and called it the theory of relativity. So what seemed so “out there,” so “over-my-head,” wasn’t really so difficult to grasp when properly explained.

So Allow Mystery… I pride myself on being able to explain things. I am more of a splainer than a writer. If you feel I am talking on some other level, then I have obviously failed. When someone asks me for directions to a place they have never been before, I pride myself on giving them directions that will take them right to it. In my books I took something very complex and virtually unknown in our society (dying process) and explained it in such a way that John & Jane Doe can read the book, look at their dying loved one, and see it… understand it… not feel lost & confused.

Where did I go wrong in this thread? If I was vague it certainly was not deliberate… that is not my style. Where did I mess up? What have I said that is unclear?

My goal is to generate participation and discussion through clarity, not to be deliberately vague so as to impress. What I would really like to see take place in this forum is more hospice nurses realizing that THEY are the experts, not the Ph.D.’s who chair the grandiose committees. Just because you don’t have a Ph.D. does not mean you are forbidden to think. You (Allow Mystery) obviously think very critically about your work. You see your superiors trying to hoodwink you… thinking you won’t be bright enough to know. But you obviously are bright enough to know, and even to speak out.

Leslie & I have learned to respect one another. Initially we butted heads but now, even when we disagree, we respect the other’s point of view.

Also, thank you for sharing. Not only are you bright, you are also courageous.

Michael

and unlike michael, i detest trying to explain something.
i have little confidence and patience with myself, and so, keep my posts to a minimum.

michael, your post to allow mystery, was a most gracious one.
you're a better person than me.

leslie

Actually Leslie, I too was taken by surprise at Allow Mystery’s last post. Just as she brought up a very interesting point, suddenly she bolted. Go figure!

I do puzzle over the responses to this thread and the earlier one on “Good Death.” I poured a lot of time and energy into “Good Death” but responses were limited to a very small group of serious posters, plus the usual assortment of cheap-shot artists, but mostly- silence. Finally I thought, “Why am I wasting my time?” So I wished River luck and did not even look at allnurses for months. Then one day River sent me a personal email and I got to wondering, “Whatever happened to that old thread?” So I looked and just about fell over. Not only was it still stickied up there, it had well over twenty thousand hits!

So what do you think Leslie? If people (presumably hospice nurses) refuse to participate, why do they read it? And if they are interested enough to read it, why won’t they participate?

I wonder if someone other than the usual allnurses posters are reading it? For example; have some nursing instructors put in on their assigned reading list? Did some hospice committee member somewhere suggest other committee members read it?

What do you think?

Michael

i honestly don't know why it has gotten all of the views that it has.
i never take notice of it, either.
but as in other threads, there are many people who enjoy lurking.
i took a quick peek at the bottom of the home page.
at any given time, it says, let's say, 300 members and 2500 guests online.
just goes to show you there's a respectable, non-participating audience at any given time.

as for the lack of response in "good death" thread, i think there are a number of factors.
most of the hospice nurses on this forum, deal in home health.
their caseloads are high, with little relief in sight.
i truly don't think that anyone has time to pursue anything beyond symptom control.
pt concerns revolved around spirituality, necessitate a trusting relationship that takes time.
pts do trust their nurses in terms of attaing physical freedom from pain and other s/s.
but most of these pts are not receiving continuous care.
there's little opportunity for any other type of resolution when visits are ltd to half an hr.

another obstacle is even when a nurse does recognize the importance of spiritual peace and transition, there is minimal data available, to support one's philosophy.
in the absence of tangible support, very few have confidence to profess or even share, such personal sentiments.
when all else fails, there's always the bible.
it's accessible, convenient, prolific and absolute.

and finally, there are many like me:
an intensely spiritual person who struggles in defining spirituality.
"splaining" is your thing, michael.
it is soooo not mine.
if you had any idea how frustrated i get w/my inability to articulately express the depth of my feelings.... i cannot do it.... at all.
i can feel it, be it and live it.
cannot verbally communicate it.
and i sense there are many like me.

sadly, this is the state of hospice care today.
i am fortunate where i work inpatient, allowing me meaningful, continual 1:1.
it allows my patients and i, to explore and discover and rediscover.
but home hospice is a different bird.
the bottom line is hospice is a booming business.

i always smile at those who post about the support they receive from their employers...
that it's still about quality care for the pts.
this too, shall become less and less, as pt loads begin driving hospice nurses away.

be well, michael.
despite your physical obstacles, don't ever lose sight of what should be.
it's your vision that has brought you so far.

leslie

Well Leslie, I think you are developing some skill at explaining things… if your last post is any indication.

I do suspect that some of the uppity-ups within the hallowed halls of official hospice-dom have been made aware of certain issues. For example, in this forum and on my own website I have been merciless in attacking the use of the term “end of life care”… because it is more than just a term, it is a mind-set… a thinking pattern. But I shall refrain from getting off on that now. My point, rather, is that the article that initiated this thread does not use that term even once. In literature written about hospice by anyone with a master’s degree on up, that is simply unheard of. It would be the equivalent of a scholarly paper suddenly appearing in the year 1574 that nonchalantly referenced Earth as a globe (as opposed to flat.) The article (that initiated this thread) was both subtle and shocking. Subtle in how it tried to not bring attention to its shocking shift in perspective. Rather than using the term “end of life care” the author seems to be testing how people will respond to a substitute term; specifically, “time of death care.”

“Time of death care” is a great improvement over “end of life care,” there is no denying that. But it is still… oh, I don’t know… ‘drab?’ ‘Flat’ maybe?

A couple of years ago it struck me that a good term to reference death and dying process would be “life altering event.” In fact, “life altering event” could reference any of the major transitions in life… which would be appropriate since death is just another life transition. Adolescence is a “life altering event,” to name just one. If people were encouraged to think in these terms, dying would have less of a tendency to scare them senseless. Plus, I believe it happens to be accurate; i.e. death actually is a “life altering event” (as opposed to a “life ending event.”) I even went so far as to investigate whether the acronym for “life altering event” (LAE) has been registered as a domain name. As it turned out, it has… but it stands for, “Logical Approach Engineering.” Oh well.

Maybe I should look up LAD (for Logical Approach Dying) or LAT (for Logical Approach Transitioning.) I like the “Logical Approach…” prefix. Approaching dying process logically would certainly be a revolutionary change from our current practice. The current consensus attitude toward death & dying (at least in the West) is a hodge-podge of insanely contradictory, illogical thoughts and expectations. Things like; God used to speak to people on a regular basis… 2000 years ago… but not now. Or; the universe is basically dead… but operates in a mechanical, linear fashion… which accidentally produced biology… which accidentally produced consciousness. Or; death is bad… when even a junior-high kid could figure out that if people did not die the human race would destroy itself within the space of two generations.

The Western perspective of death & dying is generated largely by Wall Street… intent on selling us everything from hair coloring to sexy cars to Erectile Dysfunction remedies… lest we die. Wall Street spoon-feeds the public with the notion that death is optional… avoidable… if only we are clever enough to purchase the right products. All of which is totally nuts… but it forms our consensus definition of death just the same.

So yes… a logical approach to death & dying would be, to put it mildly, revolutionary. It would involve nothing less than changing our entire social thinking pattern from the ground up.

Posters on this forum think a 15-patient caseload is overwhelming… and it is. But try changing Western thought. That is what it will take to get people to think about dying process logically.

Michael

Dear Leslie and Michael,
Please accept my apology to each for my last post on this thread. I was frustrated at my inability to articulate thoughts and feelings, and frustrated because I actually know so little about Hospice. I've been a Hospice nurse 3 years, so much to learn, wanting to be all knowing, and inpatient. Sorry!
Thank you both for your openess and sharing on the last few posts, you now seem human to me.
Michael, thanks so much for "Crossing the Creek" and your continued efforts to enlighten. I know you are not purposely trying to be vague, I
only wish I were more attuned to your thoughts as to be able to try to engage in enlightening dialogue with you. Please continue to be a "splainer".
Leslie, I think you articulate quite well, and although you may not be expressing the depths of your feelings, you are conveying much wisdom. I value your input.

Allow_Mystery…

Thank you for taking the time to post and for the kind words.

Michael

I don't know if anybody else is still reading this sticky, but I feel moved to post this morning. I've been lurking. I suppose I don't post in a forum because I feel I have nothing to add that would be helpful, or at the very least interesting. Now, this discussion has got me thinking (dangerous practice, I know!) How do we as hospice nurses address the t-rex in the corner (death and dying) in such a way to encourage further dialogue? I visited a patient recently and very bluntly said something to the effect of "how are you doing with the whole death thing?" (NOT exact words, I HOPE I was a bit more tactful than that) and what I got back was shock that I'd actually drag the 'ugly' beast into the sunlight, but a kind of relief from the patient. Now the caregiver really put up a wall and said "We have to think positively. We try not to get ourselves down with bad thoughts." I did try to press on, but I knew that if I did, I would probably be politely kicked out of the house and my 'for profit' employer would get his/her corporate panties in a bunch because I had 'offended' the 'customer'.

I don't beat around the bush and firmly believe that honesty is the best policy, especially when someone is dying. There's no time for meaningless platitudes "you're going to a better place", etc. Where are you going after this life journey? Sorry, Michael, but I have to say 'I don't know' because I DO NOT KNOW. Not because I can't face a patient's pain, but because I won't know until I go there myself. I wouldn't be honest if I say anything else to a patient. When a patient faces death, a sort of 'soul stripping' takes place (I think). The outer layers of stuff/baggage fall to the wayside and the core of who we are and what we've done with our lives is exposed. I am a little hazy on how to help someone make sense of everything they've experienced throughout a lifetime, but I will try. This is what hospice is all about (at least that's how I see it.)

the "soul stripping" should take place by the pt, not us.
it is work the pt has to do.
we cannot do it for them.
it is when the pt voluntarily starts sharing and questioning, that the work can begin.
the nurse, then gently encourages the pt to explore further and deeper, through thought-invoking questions and observations.
the pt must have a trusting relationship with his nurse, in order to successfully do his work.
never say to your pt, "what do you think of the dying experience?"
there are ways of communicating that are not threatening.

best of everything.

leslie