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.

[finn11707]

Jadelee--How long have you worked with hospice patients? Are you perhaps suffering burnout? It can really sneak up on you if you are not findings ways to regularly unload stress from the emotional impact of the work. It sounds like you want to figure this out and have invested a lot of time and energy getting where you are educationally and experientially. Why not seek some feedback through talking to the counselor you referred to. Just remember: You have the answers in you.

[finn11707]

Here is another thing I have encountered with patients or family members of patients who are dying. I hope others will give input to what their hospice agency directs and supports in these instances. I know this may be felt to be a MSW area, but hospice nurses out there know we are the front line and feel shushed at times when raising significant concerns about psychosocial problems within families. "That is a social worker area, why are you spending time with that?" is often heard in our agency and then when it is passed to the MSW, they don't see the concern warrants additional f/u by them or they can't even get out until next week...

I have often felt we would all be better at this job if it required an MSW with the RN. I guess we would be viewed as some threat if we did get an MSW along with our RN...then there is the issue of whether we would actually be paid both salaries...

Really, how do we help patients and families prepare for a good death when there are these enuendos?

Sometimes a family member states they feel they are dying too--along with the patient declining toward death...sometimes a patient intones thoughts of suicide being better than the dying process...sometimes a family member shares that they want to die too or "don't plan to live long" after the death of their loved one. I know some bereavement teams offer occasional pre-bereavement services. What can we as nurses do?

[Allow Mystery]

Hey finn

I'm with you about these msws', I find them as useless as tits on a

bull; they want the cush; info visits when they can assure that the

nurse will be available at their beck and call; please don't let be get started; and how about those chaplains who think they know more

about symptom management than the nurse, and dominate IDT with

drivel; please don't let me get started

[req_read]

Allow Mystery…

Stop beating around the bush and sugar coating everything… how do you REALLY feel about SW’s & Chaplains?

When the original designers of the hospice benefit were trying to figure out how to effect “good death” it must have been a daunting challenge. Who knows anything about death & dying process anyway? So they hedged their bet and came up with a shotgun, or kitchen sink approach. Just throw a little bit of everything at the problem and maybe someone will come up with something… docs, nurses, SW’s and a bereavement person… and just for good measure, a gaggle of volunteers too.

Actually, the bereavement person does not have to be a Chaplain. With a little on-the-job training, Joe the infamous plumber could be a bereavement person. Now that I think of it, he probably knows as much about death & dying as he does about politics & economics… but I digress.

So what have we learned about dying process since hospice’s founders put together their benefit? Hm-mn-mn. Well, we’ve learned one heck of a lot about symptom control, and that is a very good thing. But what about death and dying process specifically… in and of themselves? What is death anyway? What are SW’s taught in SW school? Or Chaplains? Or docs & nurses for that matter?

Well… ah-h-h-h… let’s see… grief process?

Yes… Elizabeth K-R’s invaluable work. But that is “grief process” set against the backdrop of death & dying… but it isn’t really “dying process.”

Here is something illustrative…

The other day I was registering a book with Bowker (the only company licensed to do that sort of thing) and had to designate the subject matter. My choices were limited to the ubiquitous drop-down menu from which I had to make my selection. And guess what subject category is notable for its absence in our bibliographic data files? Death and/or Dying. That’s right, the single most common human experience is not even mentioned… it is not a legitimate subject for discussion. We don’t need no stinking ‘D’ words scaring people out of our libraries.

The academic world has no study of dying process and our library system makes no allowance for the subject. How long has hospice been around now? Half a century yet? What have we learned about dying process in that time? Do we have a definition for death yet?

Well, sort of. We have a defacto, or implied definition. It’s “end of life.”

Maybe we should ask Joe… you know… the plumber.

Michael

[finn11707]

Allow Mystery, I hadn't been able to form a response to your last post. I wasn't quite comfortable with such a dismissive response to MSWs --I have that need to be nice, you know... Also, I guess I am really hoping they have some insights so will be helpful in bearing some of the weight of dying process...kind of like they are intended to be, I think...

I believe Michael has put his finger on it for us. We are all equally capable --or incapable-- of going there. I believe we all come to hospice work attempting to learn something for ourselves. We know inside that it is important. Then, we end up dealing with the patient and family issues AND our own along the way. It is a lot of work! Nursesw are probably the best of the lot (maybe chaplains too) to go there with people. We are trained to get close to the nitty gritty of human existance. MSWs are taught to 'buffer' it, watch the nuances of people to pull away before getting to close...keep professional distance. We are too, but then there is the more subtle nursing culture of nurses putting themself aside for the patient. Give overtime, but don't ask for overtime...skip breaks and lunch to get your over the top assignment done...but don't tell the state...act sweet and caring all the time...and put up with the crap of the dirty politics, medical culture we work in...and on and on.

I always thought someone should do a good study on the culture of the nursing profession and how that affects quality of care given, nurses' sense of self esteem, personal lives, etc. Certainly the dirty little secrets of the medical world's double standards would show clearly! And, now I digress and probably will get thrown out of allnurses...

[tencat]

Finn, why would you get tossed out of allnurses? Haven't heard you say anything over the top and inappropriate.

I don't think I've posted much in this thread, though I am a hospice nurse. The reason why is simple: Michael and Finn and Leslie and so many others are so eloquent and so much further (farther?) on their spritual journies than I am, and I feel that I have nothing meaningful to contribute here, and sometimes with my patients. Maybe it's this cold and fever I have now that are moving me to post now, I don't really know.

Anyway, I'm feeling moved. Ok. I feel that the team approach to hospice is such a good one. For whatever reason, there are times when I am not able to give the support and guidance the patient needs spiritually. Then I welcome the fact that I have aides and chaplains that can fill the gap. I have two patients right now who are not in the slightest bit interested in me being there for them on a spiritual level. In fact, I guess I should say I have one patient as I've been roundly (almost literally) kicked out on my bum by one of them and told never to darken her doorstep again. Ok, this lady has really hit it off with the chaplain, even though she is not 'religious' per say. That's great. Aha, found the reason I'm moved to post....Good. The first time I met her, we appeared to 'hit' it off fine. She even hugged me when I left. She was talking to me about her anxiety that her son and his super Christian wife were coming to visit, and she had no desire to be 'saved' and just wanted to enjoy time with them. I told her that there is nothing wrong with that, and why didn't she just TELL them that by assuring them she loved them and wanted them to be there, but did not want to engage in a soul-saving struggle? That seemed to make sense to her. This woman is one of those very intellectual folks. Used to be a high-powered executive of a company. She also has frontal lobe cancer.

The next time I visited with her, the social worker had told me that the patient expressed extreme displeasure with me to her because I had told her she couldn't cook. Ummm....ok.....never once did we discuss cooking during my two hour visit. The patient was completely cold and unresponsive, only answering yes or no to all of my questions, or not commenting at all. No relationship was left. I followed up with her about her visit with her son, and she just shortly answered "It was fine". There was suddenly this huge wall there, and I had no idea why.

As time passed, I tried to call her to visit, and she began to ignore my calls. I was worried about her as she lives alone, so I resorted to calling her mother who lives in the same area just to make sure she was ok. She was. She answered my call, and agreed to a visit. I was beginning to wonder if she really even wanted hospice at all as she had been rude with the social worker as well. The chaplain had seen her that day, but did not tell me what had occurred. If he had, I would have been so much better prepared for how it all turned out.

Once again I was sitting in her immaculate, cold and quite frankly creepy victorian living room. I was trying anything to connect, just commenting on how beautiful the decor was, how nice her dog was, etc. Nothing. No response whatsoever. So I inwardly sighed and started the questions on the form. More short answers and no insight offerred. I just finally said, "I'm getting the impression that you don't want hospice here. Am I right?" She said that yes, I was. Then I said "That's fine, if you would like to cease services, I have a form you can sign to revoke," that's when it got really weird. No expression on her face, but her hands tightened on the arms of her chair, and she began to get agitated. She said "I want hospice here. I do not want you here. Get out of my house now," and she got up to come toward me. Wow. Would she have harmed me? I don't know. I didn't stick around to find out. I grabbed my things and said "Certainly you can have another nurse, if that's what you want. I wish you luck and good will" and I got the heck out of Dodge.

Later, as I was shaking and crying in the office and couldn't figure out WHY I was so darned upset, the chaplain said "By the way, she thinks you are lying about her on that form you always take in there". Aha. Lying? I asked him to explain further. He stated that when she read the copy of the form we always leave, she felt I was talking about someone else and misrepresenting her through statements such as "requires some assitance with food preparation (she gets meals on wheels)" and "has aphasia at times with difficulty finding words". So.

Yes, I know she has frontal lobe cancer, and that is bound to create an 'unstable' individual. Spiritually, what does that do to her? Is she even 'her' as she used to be? Where does one begin to connect? I think that the window of opportunity for me to be of any assistance has closed. But how could I have seen the 'warning' signs and how could I have made the outcome different? And why does it matter to me so much?

[finn11707]

Tencat- I know the story well. What is important, is realizing that it is not you. Probably, something like that would have happened with another hospice staff member, if not you. I think it is perhaps a control attempt on her part. At some unconscious level she gets that she is heading to unknown territory...feeling the change coming...maybe doesn't want to go there. She is frightened. "Get rid of you and the circumstances may change..." she may be thinking. It has happened to me before. It does help to offer another nurse, another hospice agency, or revokation from hospice. With that offer, she will have a chance to feel alone and then acknowlege her need. She felt her need for a moment when you talked candidly to her about revoking from hospice.

Once, I was working (well) with a patient and his wife. He began to change and so the 2 daughters were called in to help with the 24/7 part. They immediate disliked me and accused me (to my manager) of over medicating their father so he would die quickly. Of course, it was not so. I told the manager I was not and he was beginning to turn and they did not want to believe it, so were accusing me. I don't think my manager believed me. She assigned another nurse. That nurse just let them do their own thing with meds. The patient was aggitated, in pain and crisis...and died 2 weeks later. Then my manager said to me "you were right!"

The problem is. We are shaken by the experience of a patient (or co workers) not trusting or liking us. We give so much in doing this work and then...

In my experience, for the patient, things start changing pretty soon after this sort of thing comes up. AND, she does have frontal lobe cancer. I hope the team supports you appropriately and also helps to prepare the family and patient for what is coming soon.

Here is what I think about the 'cooking'..of course I haven't met her; I think things are changing in her head. She is probably refering to 'cooking for the family'. The recipe for her is figuring out the relationships...How to address this 'meal of religion' that doesn't taste good to her. I know that sounds a bit far fetched, but that is probably it. Maybe she even tried what you suggested and it did not turn out well. Maybe she is dreaming her way through these issues and 'cookiing' is the theme; and you are there too giving her suggestions on how she is 'cooking' for her family.

As I have shared in prior posts, I use a lot of poetry where patients and families can intuit the meaning for themself. With certain people...I may have a 'poem for the day' I read as I leave the visit. I will progress the these of the selected poems toward issues I perceive in them and ultimately toward poems about dying. Works for me.

I admit I have some ambivalence about helping patients/families with religious differences. It is so tricky with end of life and all. The chaplain is the right person. Perhaps no nurse visits for a while, except calls to check in on symptoms. And living alone...that is another tricky part... if she is beginning to have things change in her head...Call a meeting with the MSW and Chaplain assigned and your manager perhaps too. This may take some planning and communicating together.

Finally, don't be afraid of thinking outside the box...she is.

Yes, I agree, team approach is the best of all for hospice. But it is only as good as the parts. Sometimes things fall apart there. The team I work with has a definite problem with some of the parts. But that is another subject for another post perhaps.

[leslie :-D]

tencat, sometimes our most difficult challenges in hospice, is not to take a pt's ostracisms personally.

frontal lobe lesions almost always manifest as some form of paranoid delusions...

consider it a pathologic psychosis.

once the window of trust has been shattered, it does little to try and even establish a therapeutic relationship.

at this point, spiritual enlightment would not be a realistic goal.

it's really unfortunate the chaplain did not share the pt's misperceptions with you.

it totally negates the team spirit of collaboratively achieving goals.

with that said, keep in mind there are many pts who choose not to acknowledge their forthcoming death/transition.

and that is perfectly ok.

it is not up to us to inflict our wills or wishes upon these folks.

we can only support and hopefully enhance the journey they're on.

i'm sorry you've had a rough time of it.

our line of work makes ea of us particularly vulnerable.

continue to go forward.

there will be many more rewarding experiences to come.

leslie

[tencat]

Hey, thanks Finn and Leslie. Interesting idea about 'cooking' and religious/family issues......I think you're on to something there, Finn.

What happens to someone's death journey when the brain is so impaired? Do they get to do the work that they need to? Or does the disease get in the way of that? Just something interesting to ponder. Have they 'lost' themselves? Will they be able to 'find' themselves? Just wondering.

[leslie :-D]

What happens to someone's death journey when the brain is so impaired? Do they get to do the work that they need to? Or does the disease get in the way of that? Just something interesting to ponder. Have they 'lost' themselves? Will they be able to 'find' themselves? Just wondering.

my belief is if we are to prosper in love, we all need to do the work.

whether it is 'here' or 'there', it still needs to take place.

and that 'limbo' is reserved for those who continue to resist.

leslie:)

[tencat]

Yes, that makes sense, Leslie. I suppose I was assuming that the work had to be done while the patient was in this plane of existence. Ah.....

[finn11707]

Yes, that is my personal belief too. The work gets done when it can...one place or another. I do believe, even when the brain is affected with progression of disease, some work can be done---just not in the intellectualizing way.