Care at the Time of Death

Sabby_NC · Aug 20, 2007

Thank you for the link I shall have a read when I am home from another day in Hospice.

Blessings to you all.

req_read · Aug 20, 2007

I am wondering the same thing: How is “palliative care” reimbursed?

“Hospice” is a package deal; it includes, MD, Nursing (including CNA’s), SW, Bereavement (usually some sort of Chaplain) and a Volunteer dept. It is loaded (some might say overloaded) with services and required personnel. Lots of patients do not need or want all that hospice offers, so stripping services down to only what patient/families may want/need would, theoretically, be cheaper.

Then of course hospice has to contend with the bugaboo of being a program for the “terminally ill.” Some terminally ill people cannot face up to that and prefer a different program that enables their denial. All of which points to a need for a “palliative care” program… but how is it billed? Like Home Health? As “Home Health?” For individual visits?

Michael

leslie :-D · Aug 20, 2007

here is a comprehensive site, explaining anything one needs to know about palliative care.

it is from the Center to Advance Palliative Care.

http://www.capc.org/support-from-capc/capc_publications

click on capc manual.

everything one needs to know....

leslie

Sabby_NC · Aug 20, 2007

Hi Michael,

I thought that they were billed the same?

Palliative care the patient can still go for active treatment but require assistance in Hospice home, other institution or home. They do not need to have the so called '6 months or less' diagnosis. :rolleyes:

So the treatment can be for longer periods until there is an obvious decline and treatment is not benefical, and patient then opts out for Hospice care for quality of care versus quantity.

Ya just gotta weight up the benefit versus burden with the trajectory of the illness.

req_read · Aug 21, 2007

Leslie…

I looked at the site you suggested about palliative care but it was too much bureaucratic jargon for me to wade through. Suffice to say, it is obvious that does not fit everyone, even if they are terminal. Hospice is like ordering the whole smorgasbord while palliative care (I suppose) is more like ordering off the menu.

As for Neale Donald Walsch, I actually have read some of his stuff. I did not recognize the name until looking him up (I’m lousy with names.) My wife read part of one of his books to me about a year ago. It was interesting. Some time later I picked up one of his books on CD (audio) and listened to most of it. One of the things that really resonated with me in that book was that all religions have something to offer… that the serious student of religious thought should study all religions, not just one. However, I would imagine that some folks would get hung up wondering about the “authenticity” of his books.

To me, the determination of truth is more the responsibility of the listener than of the speaker. In other words, it does not matter who says something; i.e. how many degrees they may have, if any. You could be walking down skid row and hear a drunk mumble something profound, or you could go to a lecture at Yale and listen to a Ph.D. say something asinine. Deciding whether or not what is said has any validity or relevance is ultimately your own responsibility.

Some of the most insightful lines I have heard came from lyricists or poets… who may have barely graduated from high school for all I know. In our society we tend to assign validity to statements that come from people with credentials… with the one notable exception of celebrities. If Sanje Gupta (sp?) were to announce on CNN that people should stick their fingers in fans (when they’re running) I’m sure a lot of folks would do just that.

My feeling is, (which is relevant to the author of the article that got this thread started) if you are going to wave your Ph.D. around in my face, for crying out loud, try to have something of significance to say. I really don’t care about your little piece of paper. What I am interested in are ideas and comments with some depth of meaning… and I really don’t care who says it.

Here is an example of a line with depth. It comes from a Leonard Cohen song. Leonard Cohen is a singer/songwriter who has long had a small, hard core group of devotees. He can’t sing a lick… which is sort of problematic for a singer… but some people manage to pull it off (like Bob Dylan.) I recently heard on the news that Leonard Cohen is one of Prince Charles’s favorite artists… which is sort of interesting. Anyway, here are a few lines:

So come my friend, be not afraid…

We are so lightly here.

It is in love that we are made…

In love we disappear.

Now, I don’t know if L. Cohn has a Ph.D. or if God whispered these lines in his ear or if Prince Charles suggested them to him or if he thought them up early one hung-over morning, but I do recognize a depth worthy of contemplation.

Michael

Allow Mystery · Aug 22, 2007

Michael

I agree, too much jargon for me also, and I'm still in the business ..... I'm told Medicare doesn't fund pallitive care, so not pursued in this area ... my only point being .... that as a Hospice nurse I'm getting bogged down with pallitive care (home health) mentalility ... and unable to spend the time you and Leslie espouse with actual end-of-life care with patients and/or caregivers that actually accept the Hospice philosophy.

I apologize if I'm not cerebral enough to communicate on your level.

From reading Leslie and your postings, I'm not sure we communicate on the same level, and I get the feeling you both get bored with the run-of-the-mill Hospice forum. I've had tried to compliment you both for your input, and appreciate where you are, but get the feeling I'm being condescended to. Maybe this is why we don't get more input on this forum ... so be it.

I've also read some Neale Donald Walsch, and I understand there is a movie biography of his calling. I couldn't relate .... "authenticity" or not.

I'm not familiar with Leonard Cohn, but I also can relate to his lines of depth ... for some reason reminds me of lyrics from "Tarzan", You'll be in my Heart .... Phil Colllins.

Allow Mystery ..... I got the name from a book I was reading by Doug Smith called "The Tao of Dying" ..... and if I may share

The mystery of beginnings and endings

is beyond description.

Foolish people limit the mystery

through words and concepts.

We must merely allow for the mystery.

There is a mystery in birth.

There is a mystery in death.

Every individual is a mystery.

The whole world is a mystery.

We must allow for the mystery.

We must accept the mystery.

We must be a part of the mystery.

We must be encompassed by the mystery.

What is not mystery?

Thank you for allowing me to share.

Allow Mystery

leslie :-D · Aug 22, 2007

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

req_read · Aug 22, 2007

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

leslie :-D · Aug 22, 2007

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

req_read · Aug 24, 2007

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

leslie :-D · Aug 25, 2007

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

req_read · Aug 25, 2007

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