Managing symptoms for a �good death�

[NRSKarenRN]

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.

[nurselearner]

Is there a way to "unstickey" this topic ?

[leslie :-D]

Is there a way to "unstickey" this topic ?

why would you want it 'unstuck'?

it's a highly informational thread and also allows for multi-dimensional perspectives.

i hope it remains a sticky.

leslie

[P_RN, ADN, RN]

Unstickey? That's an unusual one.

[river1951]

Well, whether people want to discuss it or not, it is important.

I have thought about it a lot and my conclusion is that we hospice nurses have to help patients be aware of their options. They shouldn't go into death without being informed consumers of their choice any more than patients should be allowed to have surgery without understanding their choice or what it will do.

In our positions, we are the experts (if any could be said to be who live on this earth). Our assisting folks to comfort of both kinds is important so they can make an unencumbered transition. I don't think it is arrogance on our part to help with this, any more than it is arrogant for the ambulatory surgery folks to instruct on side effects to report.

I don't like to have disagreements that at times become unpleasant, however as my dad used to say, if everyone agrees, it means no one's thinking.

Thanks,

Beki

[req_read]

Thanks Leslie & Beki…

jerseyRN’s allusion to Maslow tickled a memory cell or two… way, way back to my first year in nursing school. His work is an appropriate analogy; i.e. his “ultimate goal” was “self-actualization” as I recall. Of course not everyone will reach that goal… perhaps not many from a statistical point of view. But we should still adopt techniques that would enhance that possibility.

The great difficulty of course is that there is no study of “dying process” per se. There is pathophysiology, symptom control, bereavement counseling etc. But in academia there is no study of “dying process.” There fore, for hospice nurses to coach people through dying process means each nurse has to learn it on his or her own. Hospice nurses are on the cutting edge of an untapped field of study rich in its potential for learning about human beings.

Which is why I think it would be useful for hospice nurses to share their experiences, thoughts and impressions in a forum such as this one. That is why I bring up questions such as: What is a good death? What is conscious dying? And of course, have any of you hospice nurses, with all of your vast experience, ever seen or been involved with such a thing?

Dying well is like acing the final exam. When I see someone get an ‘A’ I just naturally begin to wonder how they managed to accomplish it. So I begin to re-examine everything I know about that person and take mental notes. If nothing else it will at least help me (since I am fairly certain I will die.) Similarly when I see people flunk dying 101 miserably I try to recall everything I knew about them and look for correlations (so I can avoid them.) Because hospice nurses deal with a lot of dying people over an extended period of time they have ample opportunity to keep mental tabs on trends.

I have noticed… very definitely… that certain life-styles and thinking patterns tend to yield certain dying styles. I assume I am not the first hospice nurse to ever notice such things, so have asked others to share. The more we share the more we can fine-tune what we have learned and the better we can help patients, families and last but not least, ourselves.

I have given up hope of the large national hospice organizations making such a study. The reasons for this are basically twofold:

1- The separation of Church & State thing… which gets interpreted as separation of science & spirituality and 2- hospice is a business (their goal is to make money) and the people on the boards of directors of large national hospice organizations are business people (usually from the biggest hospice companies.)

If anyone is going to make a contribution in this arena it will have to be front line hospice nurses… if for no other reason than because no one else has access to the raw data. No one else knows the patient as intimately and no one else sees close up & personal how they die. What gets learned about dying process will necessarily have to come from the ground up. In other words, from you.

Again I urge all of you to share the incredibly valuable data to which you, and virtually no one else, has access.

Michael

Serious students of religious thought study all religions not just one... just as serious students of botany study all plants not just daffodils.

[leslie :-D]

i just posted (in the good morning thread) about a hospice pt i had on Christmas eve.

i was called to care for an end-stage pt with "terminal agitation".

when i arrived, i read this elderly pt was in his active stages of dying, i.e., decreased loc and cheyne-stoking.

many family members present, all talking to me at once.

i told them i'd address all their concerns once i met with the pt.

i could hear him yelling and carrying on.

i entered his room to indeed, find him highly agitated, flustered and somewhat disoriented.

immediate assessment revealed lorazepam the wrong drug of choice.

i immediately got him started on haldol with notable improvement, except he didn't look like he was ready to go anywhere.

conversely, he seemed almost capable of heartily playing with his sev'l toddler and infant-aged, great-grandkids.

he turned to me and declared "i am the one who is dying: not them (passionately shaking his pointed finger at the crowd of family). i'm sick and tired of all the fussin'".

he then proceeded to progressively become clearer, more oriented and precise, demanding everyone to "enjoy the holiday and open up your presents!"

i assisted him in placing himself in an oversized chair, attempting to get himself comfortable and to watch the show.

for the next hour, everyone opened up their presents, talking amongst ea other as well to the head patriarch, trying to keep conversation light and flowing.

my pt's eyes glistened as he closely observed his family seemingly enjoy their holiday get-together.

when the last present was opened, he told me it was time for bed and was i going to assist him?

he clearly did not want anyone else escorting him.

as i finished administering his meds, he took my hand and placed it on his chest, followed by an audibly contented sigh.....then a few last gasps and he died.

i don't know why such a straight-forward case had such an effect on me, but i smiled for minutes after he died, just holding his hand.

so much i was thinking about:

how had he earned the dx of "terminal agitation?"

was it really as simple as being on the wrong med, compounded with his family's need to "fuss" over him?

clearly he was a man who commanded his own agenda, exercised his right to autonomy and yet, his needs were so simple.

sometimes i think we tend to get so involved with the tasks at hand, or get lost in our own agenda, that we forget the pt and what they want/need.

which brings me to 'this' good death that i witnessed on Christmas morning.

once i could bring the symptoms under control, it allowed me to explore what the pt wanted-which was in major conflict with what the family wanted.

once the family reconciliated with the fact that it was to be his way, life went on, and so, could death.

sometimes it's not as black and white.

but my experience has always been there are a hundred ways, no.... a million ways to probe a little deeper and find out what's really going on.

sometimes it's spiritual.

other times it's emotional/mental.

and yes, there are the times it is only physical because the physiological pain is that severe.

but once the physical is under control, our jobs as hospice nurses only begins.

i wish we were all paid on an hourly basis, so we wouldn't feel so pressured to schedule as many visits as possible.

in my fantasies, we could take the much-needed time with ea of our pts and tell our employer that we could only do 3 visits today because of x, y and z.

and so, more nurses would have to be hired.

now that req_read has opened this nasty can of worms, i too, am curious about how you helped your pts today.

what happened after the vomiting stopped or the pain scale went from 12 to 4?

in the world of make-believe, what would you like to share with your pts once their physical s/s are relatively stable?

and finally, i would personally like to thank req, for renewing my sense of appreciation and awe, to all the pts who work so hard to die, relatively easy.

with peace,

leslie

[aimeee, BSN, RN]

Great story, Leslie! Thanks for sharing your experience.

[req_read]

Thank you Leslie, I am truly touched.

I am not surprised your pt asked you to assist him and not a family member. Your understanding, acceptance and lack of entanglements must have been a great relief for him… as opposed to what I suspect may have been entanglements with little understanding coming from his family. Families nearly always mean well, but entanglements and lack of understanding get in the way.

During the latter stages of their dying processes I have had two different Christian ministers confess to me, in emotional states best described as a combination of tears and terror, that they doubted their own professed beliefs. They could not possibly have initiated such a dialogue with one of their own family members, or even with another clergy as far as that goes. But with me it was okay… understanding without entanglements. With me they could work it out. And therein lies the importance of the coach. A hospice nurse can do and say things no one else can.

“There are truths which one can only say after having won the right to say them.”

Jean Cocteau (1889–1963), French author, filmmaker.

Profound experiences are commonplace in hospice work. But profound experiences are often obscured by a curious phenomenon; i.e. at first they may not even seem particularly noteworthy, much less profound.

Most everyone has heard veterans say that during the heat of battle they feel very little, they just concentrate on doing their job. The impact does not hit until later when upon reflection they break down. Similarly, hospice nurses have experiences that don’t sink in right away… one simply reacts and focuses on the job at hand. But later, upon reflection, the full impact of the experience sinks in… and may be overwhelming in intensity.

Michael

Unfortunately, what often passes for intimacy is boundary-less-ness... and what often passes for depth is busy-ness.

[EmptytheBoat]

thanks for sharing your story earle58;and it

brings this thread full circle; re: managing symptoms

for a "good death". you managed the patient's

symptoms (with medication) and allowed him to cross-over under

his own accord, this is what hospice is all about.

[req_read]

EmptytheBoat…

It is axiomatic that the more one learns the more one realizes there is to learn. Another way of expressing the same concept would be to say that the more one learns the more open one becomes to new and unfamiliar ideas.

The same idea can also be expressed in reverse; i.e. the less one knows the more one is inclined to think s/he knows it all… or is closed-minded.

Interestingly, this concept assays out during dying process; i.e. those who tend to die most gracefully are those who are most open-minded… while those who struggle tend to be the more closed-minded.

When we die we are heading into the unknown, therefore the more open-minded we can be, the better we will do.

A careful reading of Leslie’s posts reveals layers of nuance that can only be acquired through experience… but more than that… serious contemplation of those experiences.

For a hospice nurse, symptom management is entry level. Without it you aren’t going anywhere. It can be tough to learn though… it is complex. But when a newbie is learning symptom management s/he is just trying to cope. Sometime later, perhaps years, after the coping phase has been passed, one may move into a contemplative phase.

For example; I doubt Leslie’s pt would have “died” the way he did had it not been for her presence… and I use the term “presence” in the broadest possible sense of the sum of her experience, know-how, intuition, confidence, insight, openness, acceptance and willingness to be vulnerable and stick her neck out on his behalf.

All of the above attributes come with time, experience & serious contemplation. That may seem daunting, but consider the reverse. What if years of experience yielded nothing of significance? What if there was no hope of ever achieving a higher level of insight or mastery than we have right now? What a horrifying thought! Our ego might get a rush from thinking it has “arrived,” but would leave us ill-prepared for what lies just over the horizon. One of life’s great gifts is that we are dumber today than we will be tomorrow.

If I were struggling in my dying process and was offered 2 options: 1- Haldol, or 2- Haldol with a nurse of Leslie’s caliber, I’d take 2.

Michael

“Ignore death up to the last moment; then, when it can’t be ignored any longer, have yourself squirted full of morphia and shuffle off in a coma. Thoroughly sensible, humane and scientific, eh?”

Aldous Huxley (1894–1963), British author. Bruno Rontini, in Time Must Have a Stop, ch. 26 (1944).

But in his 1936 novel Eyeless in Gaza, ch. 31, Huxley wrote, “Death . . . the only thing we haven’t succeeded in completely vulgarizing.”

[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