Care at the Time of Death

  1. [font=casqueopenface][color=#001a66]from ajn, july 2003:

    [font=casqueopenface][color=#001a66]care at the time of death

    [font=futura-light][color=#6666cd]how nurses can make the last hours of life a richer,
    [font=futura-light][color=#6666cd]more comfortable experience.
    [font=casqueopenface][color=#001a66]by elizabeth ford pitorak, msn, rn, chpn

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    About NRSKarenRN, BSN, RN Moderator

    Joined: Oct '00; Posts: 27,463; Likes: 13,676
    Utilization Review, prior Intake Mgr Home Care; from PA , US
    Specialty: 40 year(s) of experience in Home Care, Vents, Telemetry, Home infusion


  3. by   req_read
    Hi Guys!
    Ibet you thought I'd crossed the creek.

    Regarding the article in question:

    The article shows some surprising insight into actual dying process, although it is loaded heavily towards biological and pathophysiologic minutiae. The author does acknowledge that patients may struggle with psycho-social, spiritual or even existential dilemmas, but still tends to favor pharmacologic remedies. The overall tone is very professional, as in; clinically cool and analytical. The term "end of life care" was noticeably absent (thankfully) in this article, so it would appear that the irresponsible insensitivity of using that term is finally beginning to sink in.

    The elephant in the room (perhaps Tyrannosaurus Rex would be more apt) is the issue of whether "life" transcends "death." When a person dies one of if not THE biggest question in their mind is, "Will I survive this?" Sometimes they avoid the question, sometimes they deny it is important to them, sometimes they put out little feelers, or clues, that they are ready to discuss it (which are often ignored by the way) but THINK about it. Put yourself in that place (someday you will be there you know.) When you are dying what do you expect will occupy your thoughts? How proteins are affecting osmosis gradients in your soon-to-be-discarded body? Or do you think you will contemplate the meaning and definition of life & death?

    In Bill Moyers' special on Death In America a few years back one of the people he interviewed was a dying pediatrician. There was a point in the conversation between the patient and his wife (I think Moyers was present as well... it's been awhile since I saw it) when he (the patient) put out the feeler... the clue. He wanted to talk about whether he would survive death. Of course the wife & Moyers completely missed it... leaving the patient feeling shut out, alone, abandoned.

    The first time a dying preacher confessed his doubts to me, asking me (the "death pro") what I thought, I was stunned. Of course as time went on and I contemplated what was behind it, it made more sense. After all, he knew what the response would be if he asked his wife, children or some other preacher. I was about his only hope for a second opinion that would be based on experience, not doctrine.

    Religious doctrines tend to be closed systems of thought. That is why they are comforting. It is like getting inside of a warm bed on a chilly night. Once inside, everything 'out there' is held in abeyance. The cold cruel world and the unknown are temporarily shut out.

    Here is a simple example: If I say, "Truth is me," and reinforce that thinking pattern it becomes a circular thinking pattern... self-sustaining. What is truth? Me. What is me? Truth. I am me and I am truth. How do I know that to be true? Because me said so. And round and round it goes. It's like the sign behind the bar that says, "We have just 2 rules. Rule 1 is, the bartender is always right. Rule 2 is, when in doubt, refer back to rule 1."

    How do you know that to be true?
    Because it says so in the Bible (Koran etc, etc.) Well, how do you know that is correct? Because it says so.

    The thinking pattern is self-contained and self-sustaining. It is warm and cozy and everything inside of it works perfectly... as long as you stay inside.

    But here's the rub...

    Dying involves leaving all of our little self-contained and sustained thinking patterns behind. It is when we are really and truly forced outside of our box. When we die it suddenly dawns on us that we are about to be thrust into a vast unknown. Our warm and cozy beds are about to be removed... forcibly and irrevocably. At that point the question of whether or not 'I' will survive it becomes the ONLY question. It is also rather obvious that those who have practiced open ended thinking patterns are going to do better dealing with the unknown than those who have habitually stayed curled up under the blankets inside their little box.

    Inevitably hospice patients die and inevitably they will be overwhelmed with thoughts of where they are going (if anywhere) and inevitably they will turn to the "pro" for answers. Hospice provides clergy to handle this, but any dummy knows what they will say. They've been trained to say it for crying out loud! If you want a real second opinion you ask someone who is experienced but has not been pre-programmed.

    There are, in essence, only 3 possible answers to the question: Is there life after death?

    1- Yes
    2- No
    3- I don't know.

    If a dying person asks his hospice nurse, "Okay, no BS now... what's the skinny on this life-after-death deal? What's the bottom-line. What's the low-down Brown? What's the scoop Betty Boop? What's goin' on Juan?"

    Now, what are the outcomes of the 3 possible responses?

    1- If you say, "No." That is like kicking him in the belly. It is, to say the least, unkind.
    2- If you say, "Yes." That gives the guy hope. And if you have given it enough thought to provide some non-circular-thinking-pattern background data, that will really be helpful.
    3- If you say, "I don't know." That sends a message... kind of a muddy, mixed up message... but basically it says, "I'm a bit of a ditz and make it a point to never think about what I see every day... and besides, I really don't care about you."

    So when you analyze the outcomes it is evident that one of the answers is good while the other two are bad and worse.

    I noticed the author of this article was very careful to not address the issue of continued existence, while at the same time seemed to endorse the validity/reality of things like seeing "dead" people etc. That is reminiscent of the Q-Tips company's policy of warning people to not stick them in their ears... knowing all the while that they would be out of business in a week if people actually stopped sticking them in their ears. It's a cover-your-butt thing. I refuse to stick my neck out and say what I think... but everything I do says that I think it.

    The irony to all of this is that cutting-edge science has now concluded that consciousness produces our material universe, not the other way around. I asked one of the leading physicists in the country why, in the world of academe, someone from the physics department has not trotted across campus and notified the school of medicine that everything has changed. Instead of thinking, "How are these brain cells producing consciousness?" We might better ask, "How is consciousness producing these brain cells?"

    Consensus thinking patterns have enormous momentum. It takes a long, long time to change a consensus thinking pattern. A long time ago Christ tried to get it through our thick heads that we are all connected and that we are not just bodies. A couple of thousand years later (we aren't exactly what you would call quick studies) our leading scientists have figured it out on their own. But the majority (the consensus) still thinks of "life" as biology and bodies, that death ends life, etc, etc, yadda-yadda-yadda. Oh well, give it a couple thousand more years.

    On the optimistic side, at least now there are a few hospice nurses who have stopped saying death ends life and that dying people talking to dead people is "hallucination." But they still refuse to come flat out and say that dead people are "real" (and may administer some haldol just to be on the safe side.) But hang in there guys, we're making progress. Kind of like the snail who caught a ride on a turtle's back and happily cried, "Whe-e-e-e-e-e-e-e!"

    Seriously folks, you cannot possibly make a sober study of dying process, or make the slightest bit of sense out of it, unless and until you assume that life transcends death. I know that seems kind of scary, (Yikes! How would I get around without a body?) but now we have physicists to hold our hands as we step out into the vast unknown... the realm of pure consciousness.
  4. by   leslie :-D
    hi michael, (big hug)

    i appreciate your post and moreover, your humor.

    i work in an inpt hospice facility.
    and so, i have other staff in close proximity.
    it's frustrating, to say the least, when i am having meaningful dialogue with my pt:
    and inevitably, get "counselled" for enabling hallucinations.
    it has always been a core part of my nsg, to encourage my pts in sharing who they have seen, who they are talking to.
    my superiors discourage this and yes, administer an antipsychotic to the pt.
    to say these interventions thoroughly negate their dying experience, is an understatement.
    yet, i've been having these conversations for years, and they still choose not to fire me.
    interestingly, i've even received awards for excellence.....yet, the criticism is ongoing.
    hospice is shooting itself in the foot.
    any medical person can medicate and contain symptoms.
    where i work, the acuity is high.
    i look forward to when my pts are "stable" enough to finally work on dying.
    music, nature, sounds of nature are all conducive to sensitizing one's spiritual components.
    anything that enhances the senses, only serves to enhance the dying experience.
    my pts know that i know, they are not crazy, or hallucinating.
    it's a good death when you have died with them....or, a better death, anyway.
    but i tire of the ambivalent feedback i get from my colleagues and superiors.
    it's almost as if they will never dare to go "there" and will verbally discourage me from doing the same.
    but still, i receive awards for clinical excellence.
    i try to make sense out of the ambiguities.

    i hope it doesn't take 2000 yrs for someone to get it.

  5. by   seasonedlpn
    Death is as personal an experience as birth. Each patient seems to die differently, and the subjects discussed around the time of death are as varied as the patients. Sometimes I can approach the subject of the afterlife by asking "who will be waiting? Who has gone ahead? How long since they've seen eachother?"
    By changing the focus from the dying to the dead, the subject is more easily discussed. Not all will be comfortable with it...but those who are seem to welcome the introduction.
    We are Hospice Nurses...We are the last contact with the Medical Community for our patients....NEVER let anyone tell you how to work with them...we know them best....and we answer to a Higher Power!
  6. by   req_read
    Leslie, it is so good to hear from you!
    I have missed you.

    It does make me sad to hear about your work situation. When I lost my eyesight and quit traditional nursing (working for someone else) it was terribly frightening. My wife is an RN and still works full time. She comes home and tells me how she is treated and I get so angry! She tells me that I have been away from the BS so long that even if by some miracle I got my eyesight back, I could no longer tolerate being a nurse. Every once in awhile I get the crazy idea that maybe I should get back into it on a limited basis… say as a hospice volunteer for example. But then I realize that if I did I would probably wind up slapping my boss up side the head and… well… there would be repercussions.

    A number of years ago (when I was still working in ICU) I looked around and could see only three kinds of nurses:
    1- Nurses who had left nursing.
    2- Nurses who wanted to leave nursing, and
    3- Rookies.
    I also observed that one of the preferred techniques for getting out of nursing was to go back to school, get more degrees, then go into some kind of management or administrative position. The author of the article in question strikes me as one of these. She labors through a seemingly endless list of biologic and pathophysiologic trivia and then gingerly tip-toes around substantive subjects. But at least she did not ignore them entirely. That’s something anyway.

    In a perfect world I imagine that someone with a Ph.D. would be out in front on key issues… you know, leading. But then I sober up and realize that academia teaches people to think inside the box.

    Occasionally I get requests from nurses writing a thesis for some higher degree or other, asking if they can use my work. I have always told them okay, but add that they had probably better not reference me because from academe’s point of view I am ‘nobody.’ Dying people understand my work, but academics don’t (until they are dying.)

    A nurse in South Africa asked if she could use my books to help write her master’s thesis in hospice nursing. I told her to go ahead, with the usual warning about referencing me. I also requested that she send me a copy. She did… and I have to tell you, I was appalled! I could not bring myself to read much of it. Every other sentence referenced some authority, expert or study. The whole point seemed to be that she had to prove, beyond all question, that she had not sneaked one single solitary original thought into it anywhere. So I guess if you train people to never think outside the box… indeed, demand that they never think outside the box… then it is not terribly surprising when all they do is recite long lists of well known (at least to an experienced nurse) minutiae. Now that I think about it, in the future I believe I will tell thesis writers they cannot use my work without referencing me directly.

    Anyway, it seems that the “experts,” the ones with all the degrees and lofty positions, write articles aimed down at the rookies… while the ones in between, the nurses who live and work in the real world of palliative care, are largely ignored. But not ignored entirely mind you. They quietly listen to what those in the middle are saying. Then at some point begin to write what they overhear into their scholarly articles, but without crediting who they heard say it.

    Leslie… when your “superiors” are dying and begin to experience dying process directly, they will beg for you… by name.
  7. by   req_read
    Since participation here seems a bit sluggish I will go ahead and employ a technique that has become popular in contemporary journalism; i.e. I will first ask myself a question, then volunteer to answer it.

    So, req_read, you have stated that we are all connected. If that is true, what might be some examples of the practical consequences of such a realization… here in the real world I mean?

    Well Michael, since you ask… it means, in a very real way, that all humans are one. True, we are also each unique… and that is the great paradox. It is a profound spiritual truth. We are both unique and one simultaneously.

    You can see this paradox in operation when you observe people going through their personal dying process; i.e. they review their life and feel (whether in a dreaming, wakeful or “hallucinatory” state is irrelevant) what they have caused others to feel. The fact that the dying actually feel what they have caused others to feel suggests some sort of direct connection to others, and this connection is corroborated by some of history’s greatest spiritual teachers, and now, by modern-day physicists. One might argue this point, but to do so would necessitate arguing against the likes of both Jesus and Einstein. So if you propose to undertake that task you had better be a clever fellow.

    But req_read, let’s get down to the nitty-gritty. What, for example, does this have to do with the nursing shortage?

    Actually Michael, the fact that we are both unique and one has enormous impact on the nursing shortage.

    First you have to understand that the 2 (paradoxical) aspects of self are often at odds. The part that is unique strives to revel in its unique-ness… to accentuate it. This is the urge to “individuate.” The individual “me” basically wants just 2 things; 1- to be ‘better than’ (better than all other individuals) and 2- to be in control. As it turns out, the object of both these urges is quite impossible to achieve.

    Why is it impossible req_read?

    Well Michael, we are one. The self cannot be ‘better than’ its own self. The self IS the self.

    As for control, we are part of what physicists call “unified consciousness.” This is a concept that fits hand-in-glove with the concept of God. Physicists say that all things are made up of energy. Energy is there, cannot be created or destroyed, but it can change its form. Enlightened spiritual leaders would say the same of God. So we are really talking about the same concept here. The universe according to physicists is dominated by principles of cause & effect. In other words, it is created, not controlled. Enlightened spiritual teachers say the same of God; i.e. that God is a creator, not a controller.

    Yet humans are driven by the urge to control and to feel ‘better than.’ This manifests as addiction.

    But req_read, what does this have to do with the nursing shortage.

    Keep your shorts on Michael, I’m getting there.

    Addiction, among humans, is endemic. The degree varies considerably from person to person, but it is very nearly universal. However, many addictions are not recognized as addictions at all. In fact, some addicts are looked up to, admired, envied even. Take workaholics for example.

    The majority of physicians are workaholics. Like all addicts they are driven by the 2 core causes of all addiction; i.e. 1- the urge to prove themselves ‘better than,’ and 2- the urge to be in control. Their preferred technique for attempting to achieve these 2 unachievable goals are to memorize vast quantities of data; e.g. countless diagnostic tests, signs & symptoms of diseases and a mind-boggling array of algorhythms. Doctors like to think they are intellectual. Actually they are not. To be a doctor one must have a very good memory. Doctors memorize enormous quantities of data, but if memorizing stuff makes one ‘intellectual’ my little ol’ computer is a freaking genius. However, there is a great deal of difference between having a good memory and being able to think. Did you ever have lunch with a doctor? I don’t recommend it… unless of course you enjoy being bored to tears. Most doctors could memorize their way through a maze, but could not think their way out of a phone booth.

    But req_read, what does this have to do with nurses?

    Well Michael, the profession of nursing has been constructed, from the very beginning, beneath (as-it-were) doctors. It is an hierarchal association. Doctors want to feel ‘better than’ others, so arranged to have someone handy to feel ‘better than’; i.e. nurses. The type of person who has traditionally been attracted to nursing was one who nurtured her/his self-esteem by ‘caring’ for others. These people were willing to put up with being looked down upon by doctors in order to avail themselves of the opportunity to ‘care’ for patients. They derive a great deal of satisfaction from ‘caring’ for others and will absorb a tremendous amount of emotional abuse in order to do so.

    So req_read, GET TO THE POINT! Why do we have a shortage of nurses now? Have nurses lost their psychological need to care for others?

    No Michael, they have not… quite the contrary. It’s just that in today’s bottom-line, profit-oriented business climate, nurses simply do not have time to ‘care.’ Obsessive pursuit of the almighty dollar by agency CEO’s keeps patient census high and staff low. The financial system as currently conceived and practiced dictates that the less service agencies provide, the more money they make. CEO’s are a different breed than nurses… they don’t ‘care’… they make money.

    So nurses are denied the one thing they crave; i.e. the opportunity to ‘care.’ So they quit. Which feeds directly into the downward spiral of the shortage / overwork / I’m-getting-outa-here mindset. Actually, there is no nursing shortage. There are tons of nurses out there… they just refuse to work in an environment where they are denied the one thing they crave… the opportunity to ‘care.’

    What about the nurses who get out of nursing by going into management and administrative positions req_read?

    Well Michael, some nurses reach the conclusion that doctor’s preferred drugs of choice (control, ‘better than’ status and workaholism) are superior to the nurse’s preferred drug of choice, (caring for others) so they switch.

    One of the hallmarks of addiction is that when one’s drug of choice no longer seems to be working the first thing the addict tries is to get a different one. George Bush for example began to realize that beer had some definite drawbacks, so he switched to religion. He thought he had solved his problem. Actually, all he did was change his drug of choice. He thinks he was cured, but his thinking patterns are just the same as they were before, (addictive thinking) he just has a different drug of choice is all. Actually, we would probably all be better off if he went back to beer. At least then he would know he still has a problem.

    But I digress.

    Nurses who conclude that ‘caring,’ for whatever reason, no longer seems to be floating their boat look around and see doctors. Doctors have things like status, respect and money. That looks like fun! So nurses go back to school, get more degrees and start memorizing stuff hand-over-fist. By-n-by they get their degrees and then look down upon their one-time peers; i.e. working nurses (still stuck in ‘caring’.) Now that they are ‘in control’ (not really… but think they are) they advise (demand) that working nurses memorize more stuff. Forget about all that caring junk. The secret to success is memorization.

    And sure enough, it works. Those who memorize minutiae get the degrees, the good jobs, the BIG money… and if one of their underlings happens to come up with a good idea they write about it in their scholarly journals and claim the credit. The downward spiral is perpetuated. The doctors work themselves to a frazzle, (while neglecting their families) make tons of money and are happy as pigs in slop. Hospice CEO’s get richer and working nurses keep quitting. It is all perfectly logical.

    And that, my dear Michael, is a practical example of what can be learned by hanging out with dying people, then applying that knowledge to your current situation.

    So req_read, what’s the solution to the current nursing shortage situation?

    Ah-h-h-h-h… good question Michael. The short version of my answer to that is, “I don’t know.” However, I would add that the chances of coming up with a solution to a problem, any problem, are greatly enhanced if one is at least aware that the problem exists. Additionally, the more thoroughly and accurately nurses understand the precise nature of the brine in which they are currently being pickled, the more likely (God bless ‘em) they will figure a way out.
  8. by   leslie :-D
    you have too much time on your hands.

  9. by   leslie :-D
    and you write similarly to neale donald walsch.
    have you ever read any of his works?

  10. by   Allow Mystery
    Dear req_read
    I'm glad you're back to stir things up a bit, it has been sluggish around here; unfortunately, I have difficulty keeping up with you, but none-the-less, you seem to be on a positive mission. I hope to figure my way
    out. Thanks Old Coot!

    and to Earle58, as always, you seem to have it all figured out, I may only wish, for your patients' sake, that others will come to appreciate your karma.
    Last edit by Allow Mystery on Aug 18, '07 : Reason: misspelling
  11. by   req_read
    Hi Leslie…

    No, I haven’t heard of Neale Donald Walsch, but will look him up. I actually read very little any more, except what is available on tape from the Library For The Blind. I will look there. I did get a Mac computer recently and it is very much better for the visually handicapped (although learning how to operate it is taking longer than I expected.) I can enlarge screens quickly and indefinitely, plus it will read text to me.

    Believe it or not, I actually do think about these things (the stuff I write about here.) I get up anywhere between 0400 & 0500, put on some coffee and check emails for book orders & questions from customers. Answering emails can take awhile… just as answering the questions of patients & family members takes awhile for you guys. 4 AM is the best time to write for me. It’s cool, very quiet and my head is clear.


    Thanks for the kind words. I am Scottish & English by heritage, which probably helps explain the wry, slightly twisted sense of humor. I hope, in my own peculiar way, to empower nurses. But like the speaker at a management seminar I attended many years ago stated, “When you empower dummies, bad things happen faster.” Therefore it is important for nurses to know just exactly who they are, what they do and why they do it. Besides, dying process will force us to look at those things anyway, so what the heck… might as well get a leg up aye?

  12. by   leslie :-D
    Quote from earle58
    you have too much time on your hands.


    i truly hope the above post, didn't offend you.
    i was playing around, and my sardonic wit may have gotten me in trouble....again.
    i am so sorry if i did upset you.

    and allow mystery,

    i don't want to misinterpret your post.
    i certainly don't have it figured all out, for sure.
    and i hope i never come across as such.
    thankfully, my pts do appreciate me and my karma.
    it's just everyone else that struggles...

  13. by   req_read

    I do appreciate your wit very much. I checkled aloud when I read it, and a couple more times after that just thjinking about it. But it is hard to chuckle in a post.

    Good evening,
  14. by   req_read
    Oh my! Look at the typos!
    It is past my bedtime.