Managing symptoms for a �good death�

Specialties Hospice

Published

found at nursing 2006:

november 2006

volume 36 number 11

pages 58 - 63

managing symptoms for a "good death"

marylou kouch aprn, bc, msn

contact hours: 2.5* expires: 11/30/2008

What's a good death? Most patients facing the end of life say it means freedom from pain and other distressing symptoms. 1 as nurses, we can play a major role in easing their way to a good death.

Managing symptoms in the last phase of life is especially challenging because you probably won't have the benefit of diagnostic studies to help you assess signs and symptoms. But as a nurse, you bring unique qualities to the table: assessment skills, a partnership with the patient and her family, and the determination to bring comfort.

In this article, I'll present a case study to illustrate the most common end-of-life symptoms, including pain, fatigue, dyspnea, and gastrointestinal problems. Whether your patient has all of these symptoms or only a few, you'll learn how to keep her as comfortable as possible.

Well, this is what I think. I think some of what happens has to do with the persons' ability to let go and not be in control. One of our many delusions as humans is our thought that we ourselves are in control of our lives, instead of the reality that we are floating along in the flood reacting to stimuli we didn't create. It may be that those who are able to transition more easily are those who dod not cling to the control fantasy.

I also know from personal experience how difficult it is to palliate symptoms if people are are in spiritual pain ( read impossible). It all flows together and those problems must be addressed before you can maximize comfort.

There are a few times, I confess, that I have helped truly sedate paople whose suffering was not able to be ameliorated and was too terribly painful for any to watch.

I have never liked it, but have tried hard to find the best outcome for the entire family, given our limitations. I have always worried that sedation would make it harder for folks to transition, but the mystic side of me says it's all in the mix, and therefore OK. How's that for convoluted!?!

We can always be sure, req_read that you will keep us on our toes!

i agree with every thing you posted, river.

everything.

spiritual distress is undoubtedly the most challenging type of pain.

if one believes that they're doomed to hell, then yes, sedate them to extent possible.

no one deserves to die in such anguish.

yet there are those pts who do not believe in an afterlife; that death is literal nothingness.

and some are ok w/it-if they've lived well.

if there are regrets at the end of their time on earth, then it can be more challenging to treat those who are atheist, because all their actions on earth are irreversible.

please remember, i'm only referring to those who do not believe in God or an afterlife, and are dying with much remorse and sorrow.

for those who suffer in this particular way, and do not 'see' those who have already passed (or any other type of spiritual presence), then pharmacology is a wonderful buffer.

and finally, yes, death would be a much smoother transition if many could learn to 'let go' during their life; that one is actually not in control, but must learn to adapt and tolerate.

what i find somewhat bemusing, is the hindsight and insight gained from the pt, at the end of life.

suddenly everything becomes crystal clear.

not for all, but for many.

the existential ideal, is finally realized when it's too late. (again, a very gen'l statement)

i liked everything about your post and truly related to its' articulate punch.

with peace,

leslie

Specializes in Med-Surg, ER, ICU, Hospice.

Let me get back to a question posed previously and ask all you experienced hospice nurses about “conscious deaths” you may have seen or been involved with. It is not necessary that you were actually present at the time of death. I was not actually present at any of the conscious deaths I was involved with. In some cases others were present and related the details after the fact. In others, conscious death was presumed… based on the fact that the patient was wide awake one minute and gone the next. Not everyone chooses to leave when others are watching. Like the Elvis Presley song states…

Softly…

I shall leave you softly

For my heart would break

If you should wake

And see me go.

But I am sure that people other than New Mexicans cross over consciously.

Come on now… don’t be shy.

OK, Req_Read (AKA Old Coot) one of my favorite stories was the 25 year old leukemic who got up in the night to push his bed because he wasn't getting "there" quickly enough.

Not everyone goes screaming into that good night, I agree. It is one of the most privileged parts of our jobs to share in the awarenesses gained.

I can't wait to hear more stories- I love stories...

Like one of my good friends, now gone, once said, "We are all just a collection of stories we tell about ourselves."

Specializes in med/surg, hospice.

This is such a wonderful thread....

First off; we are "open access" so, for the time being we will pick up his chemo (it's not too $$ and it is encouraging him).

Also, I found out that he is trying to "make it" long enough to attend a specific family event that is a few weeks away. This really goes right along with the way he has lived his life: from one acheivement to the next. He has a goal set before him regarding his death. Who knows? maybe he will meet it.

I agree completely that control has much to do with death ...mostly because I have seen this over and over again in L&D. It is not a hard and fast rule for birth but I have seen too many achievement oriented first-born gals that are going to "get it right" re their birth who end up laboring for hours and hours in vain (I was one of those women ;) ) because they could not relenquish control. Pick-axes and dynamite won't remove those babies from Mom's-to-be who already have all the answers. (yup, formerly moi.)

For now, the best thing I can do for this pt is to continue to take off my Hospice name tag when I go into the house and sit and joke and chat with him about nothing in particular. I do a quick review of how his pain, nausea, ADL's and sleeping habits etc. are going. I have affirmed both he and his family in every way that I could see possible...and that is all I can do. In my private opinion, death is an incredible adventure...one that I will be so terrified and awestruck and excited to be part of one day a LONG time from now.

And, although I believe wholeheartedly in the gushing grace of God, I too have wondered about the ultimate redeeming value of sedating a patient who is in great spiritual distress. Part of me believes that everything is eventually worked out in the process after the spirit has left the body...but part of me feels convicted about the gravity of our actions while we are here, even up until the last second of this side of our existence. Maybe there are things that can only be worked out while we are here. ??? It certainly doesn't feel like a dress rehearsal. ;)

My usual way of dealing for this is to pray fervently for wisdom, courage and sensitivity. But I appreciate the affirmation that we must remember that our primary role is that of a spectator and not so much a facilitator. With patients for whom the mask is off (or nearly so) we are probably blessed witnesses rather than facilitators.

And I can relate to the complete unmasking of the actively dying. A few of the deaths I have seen have been very, very sobering. The result has been that more and more I am asking God to show me grudges, judgements, entitlements etc that I am carrying around with me. And to help me work through them. I could not face the truest depths of myself without that Help.

Life unmasked is not for everyone.

What a relief to know that I am not the only hospice nurse with existential angst! :lol2:

I am a new RN who has decided to pursue hospice and palliative care, and I appreciate all of the posts I've read this evening. (To Req in NM, I'm hoping that I'll soon be working in Albuquerque--I've got an interview there next Monday, and they're eager to train new blood!) I've always felt that at least half of nursing is understanding what ELSE is going on besides physical pain. Emotional and spiritual agony can't be alleviated with narcotics, and this is where I believe--I hope--my strengths lie.

During an interview for a hospice nurse position, I was asked by the staff recruiter how I would deal with the situation if a family member insisted that I was not being helpful, and to "get out" of their house. I am curious to know whether or not any of you have ever experienced this, and how did you handle it? (I'm not too familiar with these boards--did I just start a new subject????:uhoh3::uhoh21:)

Thanks for all of your insight.

Specializes in Med-Surg, ER, ICU, Hospice.

Miricaro… welcome to the Southwest.

river1951… I like good stories too. Unfortunately I have to provide the barest of essential facts when giving examples of patients I have known who crossed over consciously. Many of my posts are lo-o-ng as it is… and that is with me trying to be as brief as possible.

I actually wrote an anthology of short stories about patients I’ve had. It was even online (very briefly) a few years ago, but I have decided to re-write it… sometime… heaven only knows when.

Control is a HUGE issue… and not just for hospice patients, but for everyone.

Some years ago someone told me: You can control nothing… but you can create anything.

I have been contemplating that statement for years. Sometimes I think I get it… at other times it seems beyond my grasp.

I do know this however (as Leslie is aware, I wrote about this in my 3rd book.) Control is the central, common thread in all addiction. All addiction is an attempt to control… usually, to control one’s emotional environment. Show me any addiction and I can show you how that person is attempting to get control.

Which is interesting when you ponder that against the backdrop of the statement: You can control nothing…

We run ourselves crazy trying to do something that cannot be done; i.e. get control. But we are not helpless… we can create anything. Now… just what the heck is the difference?

It seems to me we are apprentice creators. We are trying to learn how to create.

Take God for example: most everyone would agree He is a creator. But He is not a controller… he lets us run amuck… let’s us have free will and act as crazy as we like.

So these are interesting thoughts to ponder. And in hospice we see that people who approach their death trying to control it have one heck of a time! Sometimes in life (so-to-speak) we fool ourselves into thinking we have succeeded in getting control. After all, you can fool some of the people etc, as the saying goes… and of course we humans are expert at fooling our self. Be no one ever, ever, ever fools death. And no one ever, ever, ever controls death. For those who spend their lives fooling themselves into thinking they have achieved control, death is a real shocker!

Those who handle their dying the best are the ones who have the fewest delusions about their ability to control… but are open and creative.

One of the ladies I know who crossed consciously did not fight or try to control the tumor in her abdomen. She dealt with it the way Steven Levine has suggested; i.e. she projected a loving attitude towards it. She even had a name for her tumor. She would pat her tummy and call it “Sammy.” And she had very little pain or any other noxious symptoms. Go figure.

Specializes in med/surg, hospice.
One of the ladies I know who crossed consciously did not fight or try to control the tumor in her abdomen. She dealt with it the way Steven Levine has suggested; i.e. she projected a loving attitude towards it. She even had a name for her tumor. She would pat her tummy and call it "Sammy." And she had very little pain or any other noxious symptoms. Go figure.

whoa.

For you, Introspective:

Sometimes, when I am not sure how to help a patient, I just spend time sitting quietly with them. For me, this has broken down barriers and helped patients tell me how I can help them. A gentle reminder, it is the patients' life, death, etc. I certainly think you are on the right track.

God bless.

Specializes in Med-Surg, ER, ICU, Hospice.

Yes… exactly true… just spend time sitting with them… being with them. That is the key. Humans “being”… as opposed to… humans doing.

I had not thought of this for years, but the lady I spoke of earlier (who crossed consciously) talked to me of her childhood. Her parents had been members of the Ku Klux Klan. But she grew up with her closest friend being a little black girl.

When she was older her politics were very “left.” Her husband (an actor) was “black balled” during the Joseph MaCarthy era. But they managed to scrape by and make a living. I could tell you some of the movies he was in… but that would be telling.

I spent many hours sitting and talking with her. I loved her (which is past tense… actually I still love her… present tense.)

She taught me a great deal… much of which I am still trying to incorporate into my life.

We like to think we are there to teach others… to help them… to “manage” their cases. But often it is they who are teaching us.

Yes... exactly true... just spend time sitting with them... being with them. That is the key. Humans "being"... as opposed to... humans doing.

I had not thought of this for years, but the lady I spoke of earlier (who crossed consciously) talked to me of her childhood. Her parents had been members of the Ku Klux Klan. But she grew up with her closest friend being a little black girl.

When she was older her politics were very "left." Her husband (an actor) was "black balled" during the Joseph MaCarthy era. But they managed to scrape by and make a living. I could tell you some of the movies he was in... but that would be telling.

I spent many hours sitting and talking with her. I loved her (which is past tense... actually I still love her... present tense.)

She taught me a great deal... much of which I am still trying to incorporate into my life.

We like to think we are there to teach others... to help them... to "manage" their cases. But often it is they who are teaching us.

try encouraing patients to be a feather on the breath of God

http://palliativedrugs.org/download/CARE%20OF%20PERSON%20AT%20DEATH%2019%20JUN%202002.pdf

Specializes in Med-Surg, ER, ICU, Hospice.

I am still curious about how many hospice nurses have seen or been involved with patients who have crossed over consciously.

It is clear that hospice nurses are sympathetic. If someone starts a thread asking for prayers or sympathy there immediately rises up a great cry as a herd of hospice nurses comes thundering in… each trying to out do all the others with expressions of sympathy.

Hospice nurses are also very knowledgeable about symptom control. Raise a question along those lines and the responses will be plentiful, thorough and very professional.

But raise an existential question and you can hear a pin drop. Why is that?

Is it because there is such pressure for productivity that nurses just don’t have the time? Is it because of the pressure to focus on symptom control that your heads are swimming with details about drug effects, side effects and possible interactions? Is it because you are taught to not get involved with the personal/spiritual lives of clients? Is it that you are not trained to focus on or think about such things?

Or is it because existential questions seem too heavy, too philosophical, too deep?

Actually, these kinds of things can be pretty funny sometimes. For example; metaphysicians say that time, as we understand it, is an illusion… that in reality past, present and future all exist simultaneously. We just perceive them one at a time… rather like music CD’s. You have a drawer full of CD’s but only play one at a time. If you played them all at once it would be very confusing… at least it would for me since I am male and not very good at multi-tasking. You ladies would probably be better at that sort of thing but us guys can walk or we can chew gum but not both at the same time.

Quantum physicists are thinking along the same lines as the metaphysicians; i.e. that there are parallel universes which exist simultaneously. They call them “membranes” (“branes” for short) and picture them like separate slices of bread in a loaf.

So where we are depends on where our attention is focused. When here on Earth our attention is attached to a physical body… which anchors our attention in time/space. As we are dying that attachment begins to come loose and we begin slipping around in time space.

One day I was sitting, talking to a (dying) patient when she suddenly asked, “Well… aren’t you going to answer the phone?”

I said, “Ah-h-h-h… the phone didn’t ring.”

Just then the phone rang. She looked at me like I was a perfect idiot and triumphantly exclaimed, “See!”

Now… because I think about such things this little incident caught my attention. I had a very good laugh over it… and it made me keep my eye open for other such clues as to how dying patients start slipping around in time/space.

But it doesn’t strike me as being heavy or serious or philosophically weighty… it’s fun!

How about this for an existential question…

If a man is out in the forest and says something out loud but no woman is present to hear it… is he still wrong?

But seriously… do you mean to tell me that you have never seen or had a patient who died consciously?

Always, these discussions lead me somewhere else. An interesting experience I once has was when I was suggesting to a family they get lemon drops fpr the patient who had a very dry mouth. The patient and I had a lovely rapport, and as I described to the family in what way this would work, the patient was going throught the motions of opening something, then popping it into her mouth. She then took my hand and said, you always know how to help me...

what can I say?

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