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.

[req_read]

Thank you Leslie.

Good pharmacologic palliation is one thing. Good symptom management is another. But a good death is something truly unique and extraordinary. The author of this article seemed to equate good pharmacologic palliation with good death… and that is nonsense.

Good pharmacologic palliation is a means to a possible end (good death.) Good symptom managements is a means to a possible end (good death.) Both require training and skill. But good death is the end game… the ultimate goal. It is the no-hitter in baseball, the 300 bowling game, the undefeated season in football. It is the person who works through all of their unresolved life issues successfully and then crosses over consciously… wide awake… stepping into eternity fully aware of who they are and what they are doing… stepping from this physical realm into the beyond wide awake and fully conscious.

Manipulating drugs so someone can finish a crossword puzzle is nice, but it does not a good death make.

I realize that in today’s hectic world of bottom line economics, hospice nurse may seldom have the opportunity or the time to witness someone cross over consciously. But when we start to equate dying in a coma with good death we are in real trouble.

This article described good pharmacologic palliation? Yes.

Good symptom management? Well, pretty good. There were some weak spots.

Good death? Not even close.

[EmptytheBoat]

earle58 and req reader, clearly you are over my head and somewhere that

I may be someday, but for now, you lost me with your rhetoric.

Until I get to where you are, I'll continue to equate a "good death" with

a death without suffering. I hope, for your patient's sake, that you

know for sure your equilization of a "good death" may include physical

suffering is accurate. We'll all find out someday! God Speed!

[req_read]

I am sure I speak for us both when I say the objective is not to speak over anyone’s head. Quite the contrary.

Let me give some examples...

I once had a patient who constantly claimed his pain was 11 on a scale of 1-10. He was really a very interesting guy with a wonderful sense of humor, but his pain seemed uncontrollable. We eventually pushed his pain meds up to levels that would have knocked a horse off its feet but still he would grin and say his pain level was 11. I spent quite a lot of time talking with his wife and one day she related to me that her husband (my patient) had moved from the South to California many years ago rather suddenly. The rumor was that he, his brothers and his father had lynched a man (a black man) and skipped town one jump ahead of the sheriff.

Now I don't know if that was true. Maybe it was... in which case, as he was dying and attempting to resolve the unresolved issues in his life, that probably would be something that would come up.

Or maybe it had something to do with a story he told me himself. He entered the army near the end of WW II. He was not involved in any of the fighting, but he was a crew member on one of the first planes flying atomic bombs around the world. He was told to shoot first and ask questions later if anyone came near the plane. As it happened, one night some drunk English soldiers wandered out near the plane when it was parked on an air strip in England. He said he shot one of them.

Maybe that bothered him as he worked through his dying process. Maybe it had something to do with his pain... I don't know. But I do know that I've had lots of patients for whom there seemed to be some sort of connection between the subjective level of pain they reported to me and past events in their lives. They seemed, in effect, to be passing judgment on themselves. The saying about, "As you judge others so shall you be judged," seems to me to be quite true... literally.

I have spent a fair amount of time trying to assist patients resolving these kinds of issues... with mixed results. But it always did seem worthwhile to make the attempt... as opposed to just burying it under some medication or other. And the reason why I felt it would be better to at least try and deal with it was because I always felt death would not "end" either their lives or their life issues.

It is not for me to say whether the discomfort people feel is deserved, but I have seen that discomfort often results from certain types of acts; e.g. acts that cause pain to others may very well fetch pain in return. I always tried to address it at the source… but often had to resort to drugs in the end.

Nowadays hospice nurses seldom have the luxury of being able to spend much time with patients. But I did have that luxury and enjoyed digging into things as deeply as I could… always looking for root causes and not just pharmacologic quick fixes. I don’t know… pharmacologic quick fixes may be just as good in the final analysis. But I have always had the feeling that if something could be resolved in the here and now, it would be beneficial in the hereafter.

Of course if you assume that death ends life… as in “end of life care”… then who cares? If that is true, it really doesn’t matter.

The author of the article in question seemed to think the best approach is to just keep them sedated (“peaceful”) and call it good… or a “good death.” That may be… I don’t know.

As we baby boomers begin clogging up the healthcare works in the coming years that may very well be the best we can hope for. And perhaps that’s just another example of what goes around comes around. We were the “druggie” generation… maybe that’s how we’ll “end” our lives too.

But I have seen patients work through their life issues and then cross over consciously. That, for me, is the ultimate goal. Most hospice patients don’t get there… maybe I won’t either. But it is still the goal.

Happy Holidays

[leslie :-D]

admittedly i'm a bit perplexed about pain issues within our pt population.

when i have a patient that c/o pain, the physical aspect is frequently the most obvious type to try and eliminate.

but keeping the holistic nature of nsg in mind, i never assume their pain is only limited to the physical.

even if a pt professes tremendous relief from their physical pain, i still need to wonder if there are other mental/emotional and/or spiritual issues at hand, other than the obvious stressors r/t dying.

even with the ever-available pharmacological agents assuring immediate escape from the world of conscious despair, i still notice that their sleeping patterns are not restful.

i note the various facial expressions, the frequent bodily shifts/movement, and often talking aloud while sleeping, leads me to believe there is much stimulus preventing them from achieving the ubiquitous 'peace' that we hospice nurses aspire to reach for our pts.

i was fortunate however, to have worked so long in an in-pt facility, where often i had 2-3 pts.

yes, they were high maintenance, high acuity.

but during their hours of stability, they were left alone with their thoughts.

and all the meds in the world, could not mask their innermost fears and anxieties.

so for me personally, it has always been a priority to let them die with as little baggage as possible.

often, a conversation r/t my thoughts of God and what He respresents, my vision of an afterlife, would suffice in appeasing my pts.

and yes, often, we would opt for stronger doses of sedation, when it was apparent that some were inconsolable.

but one thing hospice has taught me, is many, many people are spiritual beings.

and if i can get across that one's prior and undesirable life moments, are not permanent marks of judgement, then hope can be and is restored to many.

we are human and fallible.

God is loving and all-embracing.

when dying pts are reminded of this, many feel they can go on (and die) w/o the paralyzing terror of self-destructive behaviors.

whatever it is that i do or say with my pts, it's been working.

sometimes merely acknowledging one's anguish is enough to validate and so, lessen, the pain that lingers.

as hospice nurses, ea of us brings something unique to the patients.

except for clinical pathways that have shown notable successes, the rest is all gray, and we can only do our personal best.

leslie

[EmptytheBoat]

Thanks req red and earle58 for sharing your thoughts and experiences. I've

only been in Hospice 3 years and still learning much.

I've had patients that had very challenging symptoms i.e. pain, anxiety,

terminal agitation when "pharmacologic fixes" were not suffiecient and the

patient had to "work through" with some anguish. I tried to facilitate

as best I could with prayer, soothing environments, and encouraging

families/friends to take an active role in the process. I've had cases

when I thought I experienced a patient "cross over consciously", but

I still believe that symptom management is of upmost importance to

allow the patient to peacefully (or maybe not) and comfortably (if

possible) to transition, and the article in question did address (as

adequatley as may be achieved in such an article) this goal.

I don't know if it is the "druggie" generation or a generation that

just can't deal with death that drives Hospice care today, and I'm

not smart enough or philosophical enough to try to discern; but,

I'll try to remain open minded and flexible. I enjoy both of your

threads and appreciate your input. Take Care!

[req_read]

Perhaps the next logical direction for this thread to go would be a discussion of "conscious death."

What does that mean?

How often does it happen?

What is the point of achieving it?

How can it be encouraged by hospice nurses?

[leslie :-D]

Perhaps the next logical direction for this thread to go would be a discussion of "conscious death."

What does that mean?

How often does it happen?

What is the point of achieving it?

How can it be encouraged by hospice nurses?

i'm glad you asked those questions req, because many nurses (myself included) experience more and prolonged sleeping patterns as death approaches.

so to perceive 'conscious death' as a concept of literally being awake as you die, could feasibly leave many of us scratching our heads as we ponder this image.

with or without meds, it is natural to start sleeping atc as death becomes more imminent.

my personal experience has taught me that many, many pts do alot of their 'work' while they sleep.

that's consistent with the restless sleep patterns i have observed over the years.

and when they awaken, many appear disoriented; or vague and confused; or fearful, agitated, anxious.

many are reluctant to talk of their dreams for fear of sounding crazy; or even more notable, their inability to accurately explain what had just transpired.

in the initial stages of sleeping more frequently, past life events appear, even if the pt had felt s/he had successfully suppressed it.

there are events in my life that have caused total amnesia!

but you can bet your bippy that i have been diligently working on these particular life issues for a variety of reasons....one reason being, i know these memories will indeed resurface when it's my time to die.

and i don't want to spend that time struggling with those demons.

it really is all relative.

if your life has been rather uneventful and stable, then so will your death.

if one has spent their life, jumping from relationship to relationship, or being a recluse, or battling any type of addiction, or blatantly sinning while rationalizing the sins away....these people are going to struggle when they die.

and there's no running from it.

somehow, you need to make peace with your actions, or the actions of others who have hurt you.

we're not talking about superficial forgiveness but rather, an understanding and acceptance that penetrates your inner core.

when one finally experiences the problem(s) of your past, and can reconcile then integrate it into your here and now (death bed), then peace can be realized.

that is a conscious death.

and all that unburdened energy can go forward, free as an angel.

the more irratic one's life has been, the more work you'll have to do when you die.....unless one has chosen to make their life a journey, leading to clarity and tolerance.

now i would LOVE to hear what req has to say....:kiss

leslie

[req_read]

Well, I was actually hoping to sit back and hear what all the experienced hospice nurses who participate here would have to say… what they have seen and what they have thought (about what they have seen.)

The conscious deaths I have been involved with were not really terribly complicated. They were just what the term implies… people dying (crossing over) fully conscious.

I think I described one of these in one of my books. The lady who, while in the middle of talking with her son & best friend suddenly stopped, looked up with an expression of amazement at something she could see (her son & best friend could not see what she saw of course), she reached out towards what she saw, then her arms slowly came down and crossed over her chest and she was gone. Until that moment she had been wide awake, fully conscious and engaged in conversation.

Another lady who lived with her niece (who she had raised as her own daughter and with whom she was very close) did essentially the same thing. She looked up, saw something and said she was leaving now. Then she turned to her niece and said, “But I love you very much.” Then turned to look at whatever it was she was seeing and said, “But I am leaving now.” Then turned back and said, “But I love you.” This back-n-forth focus occurred 3 or 4 times and then she left (died.)

In another instance a patient with whom I had worked for quite some time (she had ALS) called her best friend into her room and gave the ring from her finger. Her friend was overcome and left the room momentarily (as in 60 seconds) to collect herself and then returned. When she re-entered the room, the patient had left.

I did extensive work with a sixteen year old with a degenerative neurologic disease who, when the next inevitable crisis occurred, elected not to go to ER. Instead his family all gathered around… his mother, his brothers & sisters… and they all held hands as he left.

A man who had been in prison for smuggling drugs and had caused the death of at least one young man said to me as he was very near dying, “I am not going to die.” At first I thought he was nuts. Then it struck me what he was talking about. He had seen where he was going, was greatly relieved, and very soon thereafter he left.

A WW II vet I worked with told me about some of his experiences. He had been a forward artillery observer in Italy. He said he had never killed anyone directly, but that he had caused the deaths of a great many people. After getting this off his chest he seemed to relax, then moved on within the next 24 hours without any significant period of being comatose.

From what I have seen, if a person can achieve a fair degree of resolution of their life experiences, they can step out of their physical body and move on… consciously leaving the physical plane behind… while wide awake.

The off & on, round the clock sleeping pattern typical of the dying and the newborn does indeed seem to augment transferring in or transferring out. But if a person can get their work done they may step out wide awake.

Of course accomplishing this feat is made much easier if one has worked on his/her life issues all along and not left everything for the last few days and moments. And of course an understanding hospice nurse can be very helpful.

These are some of the things I have seen and been involved with. How about the rest of you guys?

[introspectiveRN]

Thank you all for taking the considerable time to post all that you have written. I am a newby hospice nurse and I am struggling greatly with a myriad of the unique issues that hospice nursing presents. Your posts are addressing many of these issues...they are a great help!

First of all, it is reassuring to know that years of hospice nursing experience can still result in unanswered questions!

I am currently struggling with a very complex patient and I really need some guidance.

This pt has a particularly lethal type of CA and has already lived longer than any other pt I have seen. This person has only agreed to hospice because the exhausted family requests it. The pt is still taking chemo and is "fighting this thing tooth and nail". The pt has had a very acheivement oriented life, is relatively young and is in no way emotionally, mentally or spiritually preparing for death.

I have no idea how to help this person or how to proceed. When I visit, I try to seem as "non-medical" as possible, per pt request. The family is needy in the extreme, in denial re the pts death and the pt does not really want me around.

How on Earth and what on Earth can I do for this pt to prepare them?

[leslie :-D]

hi intro,

your pt is still receiving chemo but is eligible for hospice?

obviously your pt is still fighting his disease so trying to prepare him would not only be futile, but would disturb him greatly.

right now it is his personal fight.

he'll know when the cancer starts consuming him as he will become more symptomatic and also much weaker.

everything is in its' timing.

and of course his denial is exacerbating his family's anxieties.

they are not in as much denial as you think, or they would not have put him in hospice.

i would probably talk with the family, acknowledging that your pt isn't ready to give up the fight, and that you're all there to support him in any way he needs.

at some point, he will probably wonder aloud, why he is not getting better.

that would be your cue to intervene as a hospice nurse.

you just cannot force someone to prepare for something they're not willing to accept.

if his pain becomes greater, or starts exhibiting other s/s, you could gently remind him that it is the cancer that is wreaking havoc on his body.

inevitably he will put 2 + 2 together.

stay strong.

with peace,

leslie

[req_read]

Exactly. Thanks Leslie.

Perhaps the gentleman introduced by introspectiveRN would be a good case study.

It often seems that those who need the least help benefit the most and are the most appreciative. Whereas those who need the most help are the most likely to bite the hand trying to feed them and ultimately benefit the least. Life guards must always be cognizant that the drowning victim may pull them under too. Leslie’s advice is good; focus on the family and stay out of the patient’s way for now. After death has taken him down a notch or two you may get your chance. Overall, the odds of this fellow dying consciously are not good… but you never know. Be as non-threatening as possible but be ready. Your cubic centimeter of chance may show up at any time. Then again, it may never… and that’s okay.

The prospects for dying consciously is much greater if one has lived consciously… and conversely, much poorer if one has not.

Defining “dying consciously” is really quite simple; one chooses to cross over and does so while awake. It is not suicide… that is an attempt to escape life and dying process… which is a key component of life.

Defining “living consciously” is more subtle. People walk around awake all the time, but may have little awareness of who they are. We all wear a mask… façade… projecting an image of who we want people to think we are. Deep inside we know that’s a fake… or at least we should. Sometimes people actually begin to believe their own façade… believe their own lies. Virtually all the great spiritual leaders throughout history have advised us to “know thyself.” This is what they are talking about… to know the real person hiding behind the mask. The mask may project the image of a fighter, while inside the real person is weeping and scared silly.

Dying process methodically disassembles the façade and reveals the real person hiding behind it. That is one of the most fascinating things about working with the dying… as a group they are the most “real” people you will ever meet. Do you want to know what people are really like? Hang out with dying people. But be advised… it isn’t always pretty. Masks hide what is behind them, and there may be good reason. The mask may project an image of being understanding, intelligent and in control… while behind it lurks someone who is desperate and potentially dangerous.

For a hospice nurse to be able to relate… to empathize… s/he must be willing to do the same… to take down the mask.

Horse lovers hang out with other horse lovers… they can relate to one another. Bikers hang out with other bikers etc. It takes one to know one. When a dying person begins to realize his/her mask is dissolving they instinctively look around to see if anyone else’s mask is at least partially pulled back.

For a hospice nurse to be truly effective, s/he must be willing to take down their own mask. But that makes the nurse vulnerable… so don’t take it down too fast! You could get hurt.

Lots of hospice nurses play it safe… never take a risk. They adjust the meds, send in the SW and beat it on down the road. That, by the way, was the approach espoused by the author of the article that started this whole discussion. She saw her role as an advisor, not as a participant.

Now that I think about it, that may help to explain what happened to Elizabeth Kubler-Ross. You know, she wrote those wonderful books which literally changed how the rest of us view the world, but when her own dying process came along she lost it… even renounced many of the things she had written about and which we now take for granted. When she was an advisor things seemed clear cut, but when she was forced to be a participant things weren’t so easy.

Which is part of knowing who we are… we are participants here, not just advisors. If not before, our dying will let us know in no uncertain terms that we are participants… and the time has come to jump in and get our hands dirty. So we might as well get in some practice ahead of time because if we head into our own dying process thinking we are above it all, things will probably get out of hand.

To be really good at hospice nursing involves some risk-taking… but risk taking is risky.

It is like life… indeed, it IS life. To do it well means taking chances… but you may get hurt… so pick and choose where to take your chances.

introspectiveRN’s patient is not, at least now, worth the risk. Stay back… keep your options open. The techniques espoused by the article (that started this discussion) are the ones to adopt for now. Dying process may open this patient’s eyes enough for you to get more involved… safely… and help him. Then again, he may die unconsciously… it happens all the time… and it does no good to sacrifice yourself on every fool’s altar.

To be truly effective as a hospice nurse one must be willing to “die” with their patient. Now… if you define death as “end of life”… that would not be very smart. But if you define death as a transition where one learns more thoroughly and accurately about who they really are, then it’s okay… in fact, it’s a good thing.

But some are not ready to look at who they really are… and you can’t make them. Help the ones who can be helped. For the rest, follow the techniques outlined in the article; i.e. adjust the meds, send in the SW and beat it on down the road.

[river1951]

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!