[nettie01]

Re: Managing symptoms for a “good death”

Req_nurse thanks for your strong position as it stimulates thought and discussion.
I'm surprised by your categorical definition of a good death; what if people don't want to be completely conscious as they die?
I've found that the definition of a 'good death' varies with individuals.
Nettie New Zealand

[nettie01]

Wow! This forum is so cool! You guys are really helping me; I should come here more often.
I came today to write about an event that bothered me...

My patient on an acute medical ward had had a stroke and then extension and treatment had been withdrawn so she could die.
On assessing her she looked comfortable, peaceful and asleep/unresponsive to voice/touch/turning.

The doc had charted a syringe driver with morphine, anti-emetics etc.

I didn't want to start it as there was no apparent pain/nausea and no respiratory distress. The patient's daughter didn't know what was best - she wanted us to decide.
The doctor was happy for the order to be made PRN.

But I clashed with a senior nurse (I'm not junior, just middling, been nursing since 1990) who said I should give it because the doctor had charted it and anyway it would help the pt with any possible symptoms!
I really annoyed her (often do as I don't always follow her suggestions).

I guess it would be very obvious to you people. I just give morphine for pain and respiratory distress otherwise I feel like I am doing euthanasia (which some pts want but that's another story).

Thanks for reading
Nettie New Zealand

[req_read]

Nettie…

Hello down there! I just exchanged emails with someone in Australia. She was heading to the beach with suntan lotion in hand and could see smoke coming from bush fires, so I sent her a photo of my patio furniture… buried under a foot and a half of snow. She said it helped her feel cooler.

You raise a good point.

First, the categorical statement regarding dying consciously can be equated with the categorical statement that it is preferable to live consciously.

Nurses often equate “consciousness” with a reaction to painful stimuli, but I am using it in the sense of being aware of who we are… which has largely to do with how well acquainted one is with the person hiding behind his/her own façade.

It has to do with being conscious of why you do what you do. How well do you know yourself? For example: You are a nurse. Why? What is it about you that made you want to enter a caring profession? What is it about caring for others that makes you feel good about yourself? How does that nurture your self esteem? Are you conscious of the potential pitfalls intrinsic to that method of enhancing self esteem? If for some reason you could no longer practice nursing (don’t laugh… it could happen… it did to me) how would you nurture your self esteem then?

In his ground breaking presentation on Family Systems, John Bradshaw quoted a line from, I believe it was the play- The Death Of A Salesman. The quote was (roughly): “The greatest tragedy of all is going through life and never knowing who you are.”

While these considerations may seem rather academic or vague in the work-a-day world, they have definite implications when we are dying. Take for example the “successful,” wealthy CEO who has been envied all his life… then it comes time for his dying process and he discovers he is really not “better than” anyone else after all. Worse still, he now realizes he has been motivated largely by greed. He enhanced his self esteem with greed. Now he is about to leave the physical realm with nothing more than his consciousness, and what he is now (perhaps for the first time) conscious of is that he has really not been successful at all, but rather, he has been shallow and selfish.

Now, this fellow may very well not want to be “conscious” while dying. Dying process forces… does not ask politely or merely suggest… it FORCES us to look at who we really are. This fellow may not want to look at that, so he is inclined to become “unconscious” if given the opportunity. However, the probability is that his “unconsciousness” will not last.

Which is the great danger of assuming death “ends” life. It probably does not. So those who suppose death will somehow relieve them of bearing responsibility for who they are will probably get a big shock in the proverbial “end.”

Consciousness is no easy burden to bear…

“His was a great sin who first invented consciousness. Let us lose it for a few hours.”
F. Scott Fitzgerald (1896–1940), U.S. author.

But easy or not… like it or not… consciousness is what we are. The categorical statement that it is best to die consciously is really no different than a categorical statement declaring that it is best to know who we are… as opposed to, it is best to nurture grandiose self delusions and live your life in a perpetual state of clue-less-ness.

And as always, the proof is in the pudding. Hospice nurses have front row seats from which to observe how this or that lifestyle and thinking pattern plays out… what works and what does not. This has nothing to do with ethics or morality, it has to do with what actually works. Hospice nurses see how people die… whether it occurs gracefully or with much suffering.

Keep in mind… suffering works as a learning tool. If someone says, “Don’t touch the stove, it’s hot.” You could exercise trust and good judgment and not touch the stove. Then again you could lay your hand on the stove and leave a few layers of skin hanging there when you jerk your hand away. Either way you learn. But all things being equal, most people would rather learn with a minimum of suffering. Therefore it is best for hospice nurses to observe what works and use that knowledge to assist their patients in achieving learning (dying) with a minimum of suffering.

Yes… some people would rather not be conscious of who they really are. If I lived my life the way some people do I’d rather forget about it too. But the question is: Is it possible to forget about it? Is it possible to never have to face your Self? Personally, I doubt it. But if you assume that death “ends” life, then perhaps you think differently. But realize this: If you make that assumption it is, in effect, a religious doctrine… not to mention, it is betting all your chips on one (rather doubtful) hand of cards. And the statistical probability is, your dying process will not be pretty.

Michael

Learning something that is both new and profound is nearly always frightening… which is why we try to avoid it.

[req_read]

Nettie…

As for your 2nd post (re: your stroke patient) I would be inclined to agree with your assessment. Trust your gut.

Michael

I’ve studied now Philosophy
And Jurisprudence, Medicine—
And even, alas! Theology—
From end to end with labor keen;
And here, poor fool! with all my lore
I stand, no wiser than before.
Johann Wolfgang Von Goethe (1749–1832),

[earle58]

even though there are many pts who choose to remain alert to extent possible, there are also those who will readily opt for a cocktail of meds, to take away the 'pain'....meaning the physical, emotional/mental, spiritual pain.
so for those who choose the latter, that is a good death.
highly subjective, wouldn't you think michael?
what may be ideal to us, will make others run to the nearest train tracks.
we typically die the way we lived.
and so, if we lived our lives remaining as busy as humanly possible, not allowing one solitary moment to ourselves, we are not going to know how to handle the influx of feelings that we always tended to avoid.
that's where the marvelous world of pharmacology can work its' magic.
and i think that's the stark reality to many.
no one can expound on what a good death is, except the one who is dying.

leslie

[req_read]

Hi Leslie… good to hear from you.

When I speak of good death I am distinguishing between the specific and the general (in favor of the general)… or between the relative and the non-conditional (in favor of the non-conditional.)

For some, within the specific context of their situation, heavy doses of meds would be relatively good (relative to what their dying may have been like without them.) I have done it many times myself (given heavy doses) and induced very low levels of consciousness if not outright unconsciousness, and in some cases even death. Speaking specifically and relatively I would say that was, for those people, a good death. Speaking generally and non-conditionally however, I would not say that.

My fear (particularly among newer hospice nurses) is that meds will become their first line of treatment rather than an adjunct or a choice of last resort. The article that instigated this dialogue mentioned that the pt was depressed and wanted to know how she would die. To my way of thinking, the nurse should first have spoken with the patient about her fears and discussed probable dying scenarios (not an appropriate assignment for a SW.) If the patient wanted to know what her death would be like the nurse should have taken the time to discuss that with her. If that had not worked, then by all means get out the formulary. However, all too often, meds seemed to be the author’s first choice of treatment.

Meds are also useful adjuncts. Mitigating fear with meds can be very effective in getting a pt calmed down enough to discuss, and start working through, emotionally charged issues.

It is very true that we tend to die as we have lived. A favorite saying of a long-time friend of mine is: A tiger never changes his stripes. And that is quite true… or at least it is from the standpoint of statistical probability. Strictly speaking however, a tiger can change his stripes any time he chooses… figuratively speaking. Actually, tigers can’t, but people can.

Humans are possessed of a level of consciousness that permits choice. Once we become aware… or conscious of something… we have the option of exercising choice. If, like tigers, we operate on reflex, instinct or habit, we do not have access to choice… we just do it. That may be a statistical probability, but it is not written in stone.

With consciousness we have choices, without it we do not. Therefore, unless someone indicates, either by their deeds or words, that they do not want to be conscious, it is better to err on the side of leaving their options open… so as to maximize their choices.

Michael

Far too often the choices reality proposes are such as to take away one’s taste for choosing.
Jean Rostand (1894–1977), French biologist, writer.

[earle58]

i can assure you michael, it is not just newbie hospice nurses who feel those moments of awkwardness.
in the most gen'l sense, why did we become nurses?
in its' most gen'l sense, i would suggest because many of us are familiar with the various aspects of suffering and so, we want to help. we understand.

my biggest fear, should i ever require hospice services?
that i'll get a nurse who fears death and so, knows how to make one die peacefully, via meds and maybe prayer.
what the nurse does in effect, is project their fears onto the pt and literally makes a good death-just so they'll appease themself in the process.
i'll get the nurse who doesn't even begin to understand "what was the purpose of my life?" or "i never became a Christian: am i going to hell?"
i'm talking about very basic and reasonable questions.
i'll get the nurse that responds with "here, it's time for your haldol, thorazine, ativan, roxanol or worse, "you shouldn't be worrying about that now. you have enough on your plate".

sadly and honestly, i truly don't think there are many hospice nurses that find comfort in the spiritual or existential.
i'm recalling one poster who suggested we post this thread under "new age".
new age?????
since when is discussing the qualities of one's life, new age?
since when is discussing the finality of death (on this earth), new age?
since when is perusing one's actions and inactions during the course of their life, new age?
i sit here in shock, albeit not yet speechless.

and i truly, truly hope i am not offending any of the readers here.
what i speak of is within its' most gen'l scope of consideration.
i am speaking of hospice nurses nationwide, worldwide.
although there are cultural differences, some things should be universal.
and that is to give our dying patients, their final say.
if they choose to talk about the weather, then have the grandest conversation one can muster, about the weather.
if they want to avoid, let them-never pressure them for something they're not ready or able to share.
but if they want to know what it's like to die- tell them the process.
but do be kind in sparing the undesirable details, if you anticipate someone will struggle.
even if they perceived themself to be a horrible parent, tell them they were loved-that they made a difference in their children's lives. (of course you need to know they made a difference in whatever they berate themself with).
there's always, always something positive to contribute.

i remember one time i was caring for a pedophile who had served his time in jail but knew, he just knew, he was doomed to hell.
how did he know?
because he was a Christian, God-loving man, and that he had upset our Savior very much.
i just stated the facts as i believed them: that God loves you, no matter how bad the sinner; therefore, you are worthy of love.
he asked me what my prayer for him was.
i told him i hoped that he had no memory of what he had done; and in his next life, that he would minister to underserved, rejected, abused children.
and i wished him good mental health.
he died, not fearing hell so much but rather, as if he might have a second chance. hopeful. re-energized.

as michael has been trying to say, there is so much we can do for our pts.
and anything less than our 100% best, merely serves to minimize the optimal dying experience.
we both lose.

leslie

[nettie01]

Thanks Michael,
Your post is thought provoking. I appreciated Death Of A Salesman and relate to what you’re saying.
It’s refreshing to be able to talk about death in this forum when we’re part of a “death-denying society” (Kubler-Ross); many in my immediate entourage don’t want to discuss it. I think I know myself well when I say that my concern isn’t for my own death – it’s other people that I see dying in various states, sometimes in despair when patient and family are distressed – I see plenty of less-than-optimal deaths. For me, my faith is in “I am the resurrection and the life. The one who believes in me, even though he or she dies, will live. And everyone who lives believing in me does not ultimately die at all.” (Christ’s words, Message version)
I’m pretty excited about that and, (I don’t often say this) but I’m looking forward to dying – and I’m not depressed. I’m happy to hang around ‘til my name is called.

I see people who seem to have usefulness as one of their main values in life. They judge others who aren’t accomplishing much, according to their terms. “He’s no good, a bit of a no-hoper”; and then when they themselves become “useless” because of disability they get depressed and want to die because they’re “Past their used-by date”, no longer useful to the world, just a burden.
Well, I’m sure we’re all familiar with that.
So I totally agree that we need more than our job (e.g. nursing) to nurture our self esteems.
Regarding being happy to die, I think it would much harder to live with (my worst fears) a dense stroke or tetraplegia than to die. But even in that my spiritual life (God) would sustain me.

But I don’t have much success in helping people in their end of life transition. It’s a real shame that many people die in environments not set up to help the dying – eg an acute medical ward where I work. The hospice service in New Zealand is a Cinderella-underpaid one.
I lamely ask if they want to see the chaplain. Often people say no, sometimes yes; many people are uninterested in formal religion. Social workers, yep. Sometimes I offer to pray for them, sometimes the offer is taken up. Many people I meet who are getting nearer death don’t seem to have a decided approach. “I’ll just wait and see” they say.

Leslie, I’ve learnt something from your posts thanks, e.g. about intractable pain actually having a psychological or spiritual root.
You’re also reiterating what I thought:
“no one can expound on what a good death is, except the one who is dying. what may be ideal to us, will make others run to the nearest train tracks.”

Now, about the physical aspect of dying (in reference to Michael’s comments about conscious death), it’s my simple observation that people go unconscious to some degree as they get nearer the Big Transition. It’s not always because they are loaded up with sedatives either. I just thought (from observation) that’s how it was. Haven’t worked in a hospice though.
Jeanette


“The greatest tragedy of all is going through life and never knowing who you are.”

Consciousness is no easy burden to bear…

[req_read]

What wonderful posts!! Thanks guys.

Leslie…

I laughed at your line: “…albeit not yet speechless.” I suspect speechlessness is not in your sign.

I got sort of choked up reading about your interaction with the pedophile. That was inspiring.

Shall we gird up our loins and discuss dying and religion? I’m all for it, but it would have to be done with the greatest of care… and realistically speaking, would probably attract a fair amount of nasty sniping and back stabbing (not an unknown phenomenon around these parts.)

Discussing religion and dying is kind of like lighting up a cigar while sitting on an open keg of gun powder. Then again, all hospice nurses see it (the effects of religion on dying.) Of course many “see it” within the context of their own beliefs and to one extent or another, see what they want to see.

Nettie…

You bring up a variety of issues… some hit rather close to home.

When I lost my eyesight I became “useless,” just like that. Working through that mind-set took years… and involved many poor choices (on my part) along the way.

Your line (nettie): “…it’s my simple observation that people go unconscious to some degree as they get nearer the Big Transition.” Statistically speaking, that is indeed the probability. But there are those instances (rare percentage-wise but common in terms of raw numbers) where that does not happen… where people actually do step out of this realm wide awake. Those are the ones who fascinate… who make your jaw drop and then ask, “My God!!! How did s/he do that?”

Another factor is this: You are more likely to see it (conscious dying) if you look for it. It may or may not be obvious.

From what I have observed, the people who do die consciously… perceiving where they are going I might add… tend to be people who know their Self… thoroughly. Which lends credence to the advice: “Know thyself and be free” (wherever that came from.)

Switching gears just a little…

The term “patient’s wishes,” in all its variations, is not always quite so clear. Let me haul a skeleton out of my own closet by way of illustration (I will try to be brief.)

Many years ago, while working Peds, I had a 16 yr old male with cystic fibrosis (affecting mostly his lungs.) He had watched an older sister die of the same malady when she was 18 yrs old. He swore he would not die that way… he swore he would not be put on the vent.

For his 16th birthday he got a car… and of course he wanted to fix it up; i.e. paint it. Well, inhaling a bit of paint was all it took to push his poor lungs over the line into the incompetent range. He was admitted to the floor where his status hung in the balance… and naturally it was at 0230 in the morning; i.e. my (night) shift, when he began to crash. At that point things happen fast. I asked him what he wanted to do. He gasped, “Intubate!”
I called the pediatrician… he said, “Call anesthesia.” I did, and just that quick this young man who swore he would never be put on a ventilator was transferred to ICU… on a ventilator… where he died about a month later… after experiencing all the horrors he had sworn to avoid.

Now I ask you… what exactly were that “patient’s wishes?” Were his “wishes” the ones expressed with calm, deliberate conviction? Or were his “wishes” the ones expressed in a moment of panic?

The next morning the pediatrician called the University experts. They told him he should never have put the kid on the vent. I can tell you it still haunts me some 26 years later. What say you? What should I have done?

Michael

And oh yes… by the way… one of the pitfalls of the “caring” mind-set is self-neglect… sometimes woeful self-neglect. Nurses are subject to this malady, so it is good to keep in mind.

Nettie… A lady in Australia began her email to me with “Crikey!” What does that mean?

[nettie01]

Hi Michael
Thanks for your post.
“Crikey” is a common Australian exclamation that has recently come into focus because one of their popular and funny conservationists died dramatically and tragically when diving near stingrays – he got stabbed in the heart by the barb of one. Steve Irwin was known for his extreme enthusiasm; he did lots of TV stuff. He’d say “Crikey! Look at this beauty!!” (Meaning, Wow! Look at this big one – often a crocodile.) Here’s a link: Australia Zoo - Crikey - Desktops
“Crikey” was his catchword. (and it’s actually watered down blasphemy based on ‘Christ’).

You said: “Shall we gird up our loins and discuss dying and religion? I’m all for it, but it would have to be done with the greatest of care… and realistically speaking, would probably attract a fair amount of nasty sniping and back stabbing (not an unknown phenomenon around these parts.) Discussing religion and dying is kind of like lighting up a cigar while sitting on an open keg of gun powder. Then again, all hospice nurses see it (the effects of religion on dying.) Of course many “see it” within the context of their own beliefs and to one extent or another, see what they want to see.”

Well I don’t mind talking about religion and dying. I think I can see that I’m a product of my experiences and choices and environment just as everyone else is. I agree that we often see what we want to see etc.
From how I see it the USA has more religious people in it that NZ. We are quite secular here – many people are “practical atheists” i.e. God/ supernatural stuff doesn’t figure much in their thinking. So I’m quite aware that we live in a post-Christian society and the cigar-on-powder-keg picture is a good one. Still, sometimes I lament the absence of a good talk about other-worldly things with people who believe other than me – but, understandably, it’s often a ‘taboo’ door to open.
I’m keen though!
Having said that I’m about to go (in an hour) on a much-anticipated holiday – sun, sand, surf, heat, children, eating, reading, talking. I won’t be lying in the sun though – that’s against my principles! (We have a big ozone hole here so UV rays the worst – highest rate of skin cancer in the world I believe – here and Australia) So I’ll be absent from my computer a week or so. I’ll come back to you.

About people dying consciously, I’ll certainly be looking harder for people dying consciously. I’ve heard stories of people seeing things/people and having looks of great anticipation, talking to people already gone on, having premonitions etc. My experiences are much more banal but I’ll continue to hope.

About the 16 year old with cystic fibrosis you said:…
“Now I ask you… what exactly were that “patient’s wishes?” Were his “wishes” the ones expressed with calm, deliberate conviction? Or were his “wishes” the ones expressed in a moment of panic?”

Oh, it’s so hard dealing with a panicking person in the heat of the moment. I give them what they want if I can (what you did, as in what he wanted immediately). Actually facing death is different from the thought of it (apparently). So he wasn’t really ready to die? Understandable at that age. Sorry, I’m not much help to you here. (I was going to write ‘useless.’)
Thanks for sharing about your eyesight…incredible…unimaginable.

About self neglect – I only work four days a week. I really look after myself with my ladies hours.
Jeanette