Care at the Time of Death

your perceptions are right on, allow mystery.
i usually do not express the depths of my feelings.
if i did, i would never shut up.
kind of like michael's posts.
heh.

leslie

To all Hospsis Nurses,
I have the utmost respect for what you do. It is something that I could never do on a regular basis. It tears me up whan one of my patients on the floor - I work in ICU/CCU - passes away, so I know that there is NO WAY that I could do it day after day.
Kudos to you all!!!!!
's RN

Hello Tencat,
I enjoyed your post, and could I relate, God forgive if we were to offend the customer. Leslie is right, we must allow the patient to begin the soul stripping, but many never get there; too many times the caregivers/families get in the way by their denial and selfishness (it's all about them). I try to provide an unjudgemental environment, take away the patients fear, their comfort is most important, and teach the caregiver/family that dying is a process and we must allow the process
to unfold. How did I do Michael?

My thoughts are very similar. You've expressed yourself well. Everytime I go to post in threads like this I type a great deal and end up erasing it all because it never says what I want it to. Then I run out of patience or time or both and move on!

I am still laughing about..

“i usually do not express the depths of my feelings.
if i did, i would never shut up.
kind of like michael's posts.
heh.

Leslie”

When I catch my breath maybe I can think of something to say.

Michael

Excellent points all. Too many to address in a single post, even one of the length I habitually put up. I will stick to just one point… but since it is only one, I will try to make it interesting.

Yes, we do not know what happens after death. That is quite true. But here is the interesting part… do we know what is happening before death? We like to think so… but do we… really?

Allow me to splain…

As I understand it, the experiment that got all this quantum physics stuff rolling was when some curious scientists wanted to determine whether light is a wave or a particle. So they set up an experiment to prove light is a particle. Voila! They discovered light is a particle. But then they set up an experiment to prove light is a wave and Lo! Light is a wave. To make a long and complex story short, this and subsequent experiments show that reality is what we want it to be. There is no clear distinction between the observer and the observed. Reality is not something that is “out there,” independent of us, rather it is somehow a product of our having observed it. Physicists now say the universe consists of abstract thought and is a matrix of infinite possibility. As one physicist puts it, (paraphrasing) “…this is not a universe of atoms, it is a universe of potential atoms.”

Confusing? You bet it is!

When I get up in the morning and go to the kitchen to make my coffee, the hot water pot, coffee cup, coffee etc. exist in the universe as one in an infinite array of possibilities. When I go into the kitchen in the morning I “collapse” the possibility of my hot water pot etc. into my daily routine of having a cup of coffee. “Collapse,” in quantum physics jargon means selecting a potential reality and making it “real.” One of the chief dilemmas in this quantum view is, of course… who is the observer? What is consciousness? Some of these brilliant scientists have theories, but basically, they don’t know.

All of which is to say, there are 2 basic elements of our reality; i.e. the observer and the observed… and we don’t really know what either of them are or how they interface.
There is also the issue of… if everyone is creating their own reality, how can we agree on what reality is? How do our separate realities interact with one another? Good question. Physicists refer to this general issue as “entanglement.” How does my reality get entangled with your reality in such a way that I can create another verbose post & y’all can read it? Hm-m-n-n. Another good question.

Then of course there is the question of time. Does it really exist? Is it just a by-product of having our consciousness tied to a point in space & time (to a body) in a 3-D universe? Can time go backwards? One famous experiment tried to measure the time it took for a finger prick to travel to the brain and be recognized by the brain. To the investigators astonishment, the sensation of being pricked occurred in the brain before the finger was actually pricked! So did the brain create the prick on the finger that the scientists thought they were creating and trying to measure? Or is time actually going backwards in what we call the ‘moment?’ Or does time exist only in our heads?

So yes, we have no bananas… we do not know what “reality” is before we die, much less after. But I think here is the key thing to take away from all this scientific confusion…

What we do not know is so huge… so vast… so mind-bogglingly immense… compared to what we do know, the only sensible perspective of the universe is one of awe and wonder. And if we do not even know whether a cup of coffee exists except in our own mind, how can we say that a dying person talking to a dead person is not “real?” In fact, dying people talking to dead people seems like pretty small potatoes compared to collapsing a potential reality from an infinite matrix of abstract thought. And (you knew I’d sneak this in somewhere) the contention that death ends life is an even less sophisticated world-view than that expressed by Neanderthals on cave walls in France.

Now… back to the “real” world (whatever that is.) Actually, physicists call the illusion of energy-as-matter the “classical” view of reality.

When dealing with a pt/fam you can usually “sense” when the pt wants to talk. Let him/her know that you are open… that you will talk if they want to. Some people never will want to talk. That is okay and usually pretty obvious. Let sleeping dogs lie. Sometimes family members assume the posture of the “guardian at the gate making sure no one gets through.” They don’t want to talk themselves and will try to prevent the pt from talking… even if the pt wants to. You might want to figure a way to sneak past the guardian for these pts… if they want to of course.

And no… we do not know. Hospice nurses do not have the answer. What any of us knows of the universe is more of a question than an answer. The point is to be open… to know that we do not know… and to let pts know that they are not alone in that regard. Dying process forces people to face the awful realization that they really do not understand things like the universe, eternity, time, physical matter or even who we are. People like to think they know… but none of us do. Let pts know that’s okay… and that they can cope with it.

The universe is a mystery. How well one deals with the universe can be measured in how well one accepts and deals with mystery.

Which is why (Allow Mystery) I love your chosen name.

Michael

and what michael said, is what we can share w/our pts.
that we DON'T know....but we can explore it together.
i don't think our pts really want answers, per se.
but they do want to make sense of what has happened, what is happening and what will happen.
if you can get your pt to acquire an understanding of what THEIR truth is, then you both have reached a milestone.
that is why a good death takes time.
it is indeed, a process, a journey.
that's why it's important for the pt to trust their nurse.
that's why it's important for the nurse to be receptive to the unfamiliar.
there is potential for incredibly personal 1:1 time, entering the discovery zone.
these interactions can take your pt exactly where s/he needs to be and needs to go.
much of this time is spent putting things in perspective for the pt.
a guilt-ridden father/pt who deserted his kids, can finally understand how this tragedy turned into a blessing for his now, adult children.
an anguished dtr/pt, may understand her mother, who seduced her sil only 2 yrs ago.
people do not want to die with baggage.
they need to make sense of their lives.
that's why the nurse/pt relationship is so precious.
the opportunities are limitless, in what we can give to our pts.
but the nurse must be willing to live and die w/their pts.
we need to be in their world.
and that is only after we have been invited to do so.

depending on the type of life your pt has lived, their age, and their disease, a good death can take a week, or it can take months.
but with many receiving hospice very late in their dx, there often is not enough time to do what needs to be done.

good nsg care goes way beyond controlling symptoms.
it is only when the symptoms are contained, the work can begin.
an effective hospice nurse, will recognize that.

leslie

Hear! Hear! (or should that be Here! Here! Are there any Brits in the house to clarify?)

Before moving on to another interesting issue allow me to put some finishing touches on the last. Bear in mind that while we do not know what happens after death the overwhelming preponderance of evidence suggests that, 1- life does transcend death and, 2 – direct observation of dying people reveals that, generally speaking, those who believe life transcends death do better than those who do not.

Now… another issue brought up by the author of the article in question had to do with support groups for hospice personnel… so as to offset (at least theoretically) the impact of accumulated loss/grief.

I would suggest that a broader understanding of what life & death actually are is beneficial in coping successfully with the emotional impact of dealing with the dying is concerned. And of course official hospice-dom has no position on this issue because to do so would be considered religious doctrine. So, just like hospice pts, hospice personnel are left dangling… on their own.

Since we have been left to our own devices, why not do some research… some sharing? No one is going to help us, but then there is no law against helping ourselves… so what the heck.

Obviously, emotions are a huge part of hospice work. How we think about, deal with and cope with emotion is a huge issue. And emotions are not just big in hospice work. They are hugely important in understanding all human experience. You will note that any book dealing with philosophy must also account for emotion.

“Scientific” views of emotion tend to follow the old or “classical” path, even among quantum thinkers; i.e. that they (emotions) originate in biology… neuropeptides adhering to receptor sites in the brain etc. Personally, I think emotions are far more elemental and influential. You may agree or disagree… I am just putting this out there… providing a glimpse into my personal views.

First of all, people tend to think of “reality” as: Yea or Nay, Black or White, either it Is or it Ain’t… one or the other… binary. However, after working with dying people I began to think of “reality” as something less concrete… as something relative… as something on a continuum. Think of “reality” rather like you have been taught to think of pain. You measure pain on a continuum… usually 1 thru 10. You are also taught that subjective pain is “real,” even in the absence of any objective cause.

Next, I think of emotion as something that sets or fixes experience in reality… rather like the “fixer” chemical bath in the photographic process sets or fixes the image on photographic paper. In other words, one might have an actual experience, but if the emotion evoked by that experience is blocked, the experience never really becomes “real”… or it is fixed at a relatively low level on a continuum of reality.

By way of illustration I will first provide an overt example…

OJ Simpson seems to be remarkably unaffected (emotionally) by the slaughter of his ex-wife & her boyfriend. How can that be? Perhaps because he has succeeded in blocking the emotion of it and therefore it is not really real… for him anyway. Nicole’s family have not block the emotion of it, so for them it is very, very real.

Now let’s get down to the everyday experiences of hospice. How often do we hear a family member say, “This just doesn’t seem real.” In bereavement work this is quite common. Survivors say things like, “I turn around and expect to see him standing there. His death just does not seem real.” Why?

Perhaps because letting in the emotion takes time, so the “realness” gradually moves up on the continuum scale as the emotion is processed and accepted.

Let’s say you have a daughter caring for a dying father day in and day out. She let’s the emotion/reality in little by little day after day. Then the daughter who resides on the other side of the country shows up near the proverbial end. For the caregiver daughter the reality of dad’s death is say, 8/10 on the reality scale, but for the late comer his death is hovering closer to 2/10. She does not want the reality to ascend up the scale to being more real than it already is, so she looks for ways to stop it. And how does the late comer daughter try to keep the emotion/reality at bay? Well, first of all, by stopping him from dying. She is the one who says things like, “DON’T TALK ABOUT DYING! WE WON’T HAVE ANY OF THAT NEGATIVE TALK AROUND HERE!!!!!!” The caregiver daughter, on the other hand, has experienced the emotion/reality little by little and has learned to let it flow through.

Now, consider that if we (humans) actually came here (Earth) to learn stuff, we cannot learn it unless or until we let the emotion/reality of our experiences be felt/fixed. If we go to all the trouble of having an experience, but then block the reality of it, we have wasted our time.

But lucky for us, here comes the cavalry to save the day! Dying process presents us with one last opportunity to let in the reality/emotion of our experiences… lest we waste our lives by blocking out the reality of our experiences.

In the quantum view, reality is created (or “collapsed”) from infinite possibility by observing it. I would take that a step further and suggest that the reality thus collapsed is still in an immature state… it is merely a raw form of reality that registers rather low on the continuum-of-reality scale. In other words, to “create” we must first observe, and then feel.

An earlier, non-hospice poster expressed admiration for hospice nurses and wondered at how we deal with the emotional impact. I would suggest that successfully dealing with the emotional impact of dying process does not involve blocking the emotions out, but rather, learning how to let them flow through. FEEL it, don’t block it.

Like death, emotions are our friends, not our
enemies. If you block emotions out you will eventually choke on them. Ideally, good hospice intervention would involve assisting pts in gently drawing out blocked/buried emotions rather than sweeping them under a medicinal rug. Dying ought to be a time of gathering up all the fruits of one’s experiences for future reference… as opposed to cutting them loose… only to have to repeat all those experiences and lost opportunities later on.

Life gives us opportunities to learn. If we fail to learn those lessons, life simply presents us with more opportunities. That is how life works on this side of death, so why would we assume it to be any different on the other side? Another way of putting it would be to say…
It would be naïve to assume that we could escape the responsibilities of living by the simple expedient of becoming dead.

Michael

Lest someone misconstrue, let me clarify…

Leslie is absolutely correct in saying that symptom control is essential. It is, in fact, the first, necessary step. It is like starting the engine of your car. If you don’t start the engine, you aren’t going anywhere. But after the engine is started, the point is to go somewhere. After the symptoms are controlled, the point is to get the work of dying process done… which is the harvesting of the fruit of one’s life experiences… to ‘real-ize’ (as in- ‘make real’) one’s life.

To underscore the point I was trying to make in the previous post I will expound a bit on one of the stories from my 3rd book; i.e. the one about my Native American colleague (a CNA with whom I once worked.)

One of her duties was to take the dirty laundry to the basement every evening… but she would not go alone. You see, she had to go past the morgue to get to the laundry. Everyone knew this about her, and everyone accepted it… but after getting to know her I asked her, “Why?” By that time she trusted me… that I would not think she was crazy (perhaps because I was crazy too?) Anyway, she told me she could see dead people and that it scared her. She told me that Indians can see such things, and that white people can too. It’s just that white people block it out. When white people see (for example) a dead guy, they look away, blink and rub their eyes, then look back and sure enough… it’s gone. We (white people) don’t want to see dead people, so we don’t. It would scare us too much. It would upset our orderly little interpretation of reality. We like things neat and simple and above all, NOT scary!

My Indian friend accepted the emotion (being scared) and therefore her reality was more expansive than ours… or at least, until we die.

Even white people begin to see things when they die. Why? Probably because their 5 physical senses are being degraded. When sensory perception fades away, what’s left? Extrasensory perception of course. The perceptions that we block out for most of our lives because they are too scary suddenly become the only perceptions we have left. Ironic aye?

So when hospice pts report seeing things we cannot and are frightened by it, that is perfectly normal and valid… both the seeing and the feeling. At that point the nurse should reassure the pt… but NOT by trying to convince the pt his/her perceptions are false; e.g. hallucination etc. When the pt says he is having pain you assume it is real and treat it. When the pt says he sees a dead guy… or a spirit… assume it is “real” and support the pt.

We make our reality smaller, simpler and more manageable because we cannot handle the emotion intrinsic to a larger reality. Then we puff out our chests, pat ourselves on the back and proudly declare this is so because we are more intelligent and realistic than Indians… plus we’re Christians.

Ain’t life a hoot?

Michael

Thanks Michael,

Life is a hoot, and so is death. Allowing for a good life and a good death is our responsibility, and we may best meet this responsibility
by being in peace, first with ourself, and then with others. We may be in peace with others by being nonjudgemental and allowing for that relationship which Leslie so eloquently addressed in her last posting here.