Recommended Reading for Hospice Nurses

There truly are many great resources out there to read.
All that has been recommended is awesome.
It is great to lay your hands on anything regarding Hospice and EOLC.
A big wave to all Hospice Nurses today. LOL Whether you are the Hospic or Hostage nurse hahahahhaa

I highly recommend watching the DVD, “Down The Rabbit Hole.” It is kind of a re-edited version of “What The Bleep?” It is actually on 3 DVD’s and I just recently discovered that each DVD is recorded on both sides. The back sides contain interviews with the various people in the movie… most of whom are leading thinkers in their various fields. “Down The Rabbit Hole” is not about death & dying per se, it is about ‘life’ and how we define, perceive and think about it… which would be a good thing for hospice nurses to be aware of and think about. If hospice nurses actually did think about such things they would not use the ignorant and disgusting term “end of life care” (EOLC for short.)
Michael

Michael, I understand that you feel very strongly about this subject, but using the terms ignorant and disgusting is pretty harsh. As a society, we are struggling with this subject and to turn around over half a century of refusal to even discuss the subject of death, let alone explore it. Our nomenclature lags behind and it will likely be some time before we can arrive at a term that is really inclusive and descriptive of the full experience.

aimeee…

Yes, you are absolutely correct. Describing the use of the term “end of life care” as “ignorant and disgusting” is harsh.

Then again, my words are not nearly as harsh as death is on those who coast along through life thinking such thoughts (like, death is the “end of life”) and then suddenly wake up dying one day… victims of their own thinking patterns. I may be harsh, but all things are relative… and relative to death, I am a regular sweetheart.

My feeling is, as “experts” in dealing with death and dying, hospice nurses ought to pass on the fruits of their labors and observations so as to benefit the public at large… to encourage the public to start thinking in ways that will make their inevitable dying easier.

We all know (as you have noted) that we (Americans) do not deal well with death (“over half a century of refusal to even discuss the subject…” in your own words.) Short-term, we can use pharmaceuticals to sort of patch things together. Long-term however, we ought to be looking at causes and outcomes, then treating the problem rather than merely palliating the problem.

The “problem,” in this case, has a lot to do with thinking patterns. Thinking patterns are HUGE in terms of understanding human behavior (my 2nd book, Key Elements Of Transitions, is mostly about thinking patterns.) In Fred Alan Wolf’s book, A User’s Guide To Your Universe, he talks about the same thing; i.e. how difficult it is to change thinking patterns. Social thinking patterns are unbelievably powerful in terms of their inertia. But they can be changed. It is possible. And the very first thing that must occur in order to effect a change, any change, is first… to become aware… aware that one of your thinking patterns is actually causing you pain.

When working in ICU one night suddenly there came a cry from Room # 2… “Hey!!! Hey!!! Hey!!!” Another nurse & I rushed in to see what the problem was. There was this old fellow, intermittently yanking on his foley. Every time he would yank, he would then yell, “Hey!!!” He did not realize he was doing it to himself.

We (humans) are like that. We fall into habits, or thinking patterns, that ultimately cause us pain. Yet, even when someone figures out that this particular habit, or thinking pattern, is hurtful and suggests we try something different, he is likely to be ignored. And if he raises his voice he is likely to be labeled a rabble-rouser… a trouble-maker. But I gotta tell ya… when you are eyeball to eyeball with death, I will seem like peaches & cream in comparison.

Ironically, one of the things that supports and nurtures our colossal thinking patterns are little things… the little phrases and figures of speech we use on a daily basis. The old axiom, “Sticks & stones can break my bones but words will never hurt me,” is, in a certain context, entirely wrong. The words we habitually use are actually like little affirmations… little prayers even. When we say, on a regular basis, “end of life care,” we are affirming the hurtful thinking pattern that death does indeed “end life.” After having affirmed and reaffirmed this thinking pattern a few million times it is hard to change. To change it one must CHOOSE to change it, every day, over a long period of time… until a new pattern is habituated. But when we are dying we no longer have a “long period of time” to change deeply entrenched thinking patterns. At that point we are simply stuck with what we have already habituated.

“Life after death” is not something one can simply choose, one day, to believe in. It has to be practiced (created) day after day after day. And one of the keys to accomplishing this is to choose, every day… to consciously elect… a different affirmation. You cannot tell yourself “death ends life” nearly every single day of your life and then suddenly, magically, think something entirely different in the last couple of days.

And if we cannot even convince hospice nurses to stop using a hurtful affirmation, what are the chances of convincing the public?

Actually, the general public has not yet been trained to use this hurtful affirmation… or little prayer. So far it is mostly just hospice personnel who use it. So why not throw it out now… like a hot potato? After all, monolithic thinking patterns are a whole lot easier to prevent than they are to change.

Michael

Okay Dokey.... Actually the term "palliative care" always makes me mad. I think IT is disgusting. "Palliative care" (to me) is care that the insurance company will reimburse and the acute care hospital will pass off to the pt and family as "quality of life" while they hook 'em up to PCA pumps to infuse chemotherapy (or terminaltherapy, as one pt once called it.) The term "palliative care" makes me want to puke. I'll go sit down now....

That is interesting… an aversion to the term “palliative care.”

Whenever people have a bad experience they will associate whatever words were used with that bad experience. I ran into a lady re-stocking vegetables in the grocery store just a few days ago and we got to talking and she asked what I did and I said “write” and she said “what?” and I gave her my card and she immediately said “I hope that isn’t like hospice,” and then started talking about sitting with her aunt (who had been in hospice) and how awful it was etc. She suddenly changed from a nice lady putting out vegetables into an angry woman. I just sort of skedaddled.

As you know, hospice can be very touch-and-go under even the best of circumstances and with even the most skilled practitioners. Nowadays, with nursing shortages and a hi-volume, hi-income business strategy being used by many agencies I expect there will be a lot of people with a bad taste in their mouth… regardless of what we call it.

A number of years ago, when I was first starting out, I received a call at home one evening from ER saying they had a hospice pt there. Whoa! The last thing I wanted was my hospice pts in ER! So down I went and Lo & Behold… it was not one of my pts at all. It was a terminal pt, but not a hospice pt. However, she could not bring herself to say the ‘D’ word (death or dying) and she could not bring herself to say the ‘T’ word (terminal) and I don’t know if she even knew the ‘P’ word (palliative.) But she did understand the word “hospice” and apparently felt that was the least frightening way she knew to describe her condition.

The people who originally invented hospice came up with an almost perfect word – “hospice.” It has no negative association, (or at least it didn’t then… maybe it does now) no doctrinal connotations, no heavy baggage at all. It was warm & fuzzy & friendly.

It is fascinating to look at the intellectual and conceptual ways in which humans use words… how they link (or don’t link) them with reality. I once had a lady (terminal Ca) who said, “Cancer… that’s not so bad. It’s just a word.” That inoffensive little “word” killed her, but she found it less scary to think of it as just a word.

Anyway, how did it happen that hospice switched from “hospice” to “end of life care?” Who thought that up? Does anyone know? Was it a policy change? Was it a philosophical change? Was it done consciously in an organized fashion or was it just sort of an accident that gained momentum? Has it ever occurred to anyone to ask pts & fams (perhaps take a survey) which term they prefer? And what fascinates me most of all is why hospice nurses (at least in this forum) are so defensive about it. You cannot even use the lame old excuse, “Because that’s how we’ve always done it,” because even that is not true.

Michael

Thanks so much! I am a new RN (Med-Surg) who would like to go into oncology or hospice nursing next. I will look into this book.

"Death Without Denial, Grief Without Apology" by Barbara Roberts, former Oregon Governer - she lost her husband to prostate CA while in office. Read it several times and give it to the families.

Recently finished "Final Gifts". As said before, this is a great read. The book uses the term" Nearing Death Awareness" for the mental process often experienced as a person declines toward death. I also just finished the first of three books by Michael Holmes, "Crossing the Creek". I certainly appreciated the thoughtfulness and insight that is shared based on his experiences with the dying. The tone of the book is soft and appealing. These books help give me a vocabulary to discuss this unique process with staff new to hospice. There is value to be able to reflect on the dignity and importance of recognizing the complexity and opportunities often missed in the dying process.

Hello, Be Excellent, nice to hear from you once again, missed having your input here for some time.