Managing symptoms for a “good death”

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?

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

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.

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

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."

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!

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????)

Thanks for all of your insight.

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.