Managing symptoms for a "good death" - page 4

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... Read More

  1. by   river1951
    Ow, I am such a right winger (tho left handed) and really enjoying this thread. I cn't imagine being new Age!!!
    I think a lot about the times I share with patients and like to talk about this stuff. I think stimulating conversation and ideas is good, even if it makes some people uncomfortable!!!!
    I don't know where else I could exchange ideas on this stuff. If you don't want to play don't. Nothing here is hurting anyone.
    my 2 cents
  2. by   leslie :-D
    Quote from EmptytheBoat
    req reader, I'm not sure where you want to get to, but obviously
    you are not getting there. You certainly have a right to your
    opinion and to share your experiences, but I don't think you
    should insinuate that other Hospice nurses are too ignorant
    or inpatient to be able to distinquish/enabable a patient to "cross
    over"; I believe you are being presumptious. All of us are "crossing
    over", push, shove or jumping. Maybe I, and others,
    have experienced unusual deaths, I'd imagine most experienced Hospice nurses have, but that doesn't mean that they wish to share the experience with you or this forum, and doesn't make them less of a Hospice nurse
    for not doing so. Enough already, Hospice is pallative care, maybe
    you should try the psych forum or start a "new age" forum to promote
    your books and beliefs.
    By the way, I'm left handed too!
    i don't know why you are being so antagonistic.
    take the time and reread req's post.
    he is trying to understand the lack of response and he has offered various reasons why some are reluctant.
    he was articulate, sensitive, injected humor and was genuinely curious.
    no insinuations were made whatsoever.
    good grief.

    and yes river, it is stimulating conversation.
    i think this topic can be overwhelming.
    how does one affectively qualify one's spirituality?
    i would love to talk about it, but req doesn't want to hear from me....

    leslie
  3. by   req_read
    Leslie! How can you say such a thing? I love hearing from you. You are one of the most experienced, insightful hospice nurses I have ever come across. If we cannot share our experiences and insights, what is the point?

    You stick your neck out… take chances… not just here in this forum, but with your patients as well.

    Listen… I poke fun at nurses for being sympathetic. At my age I have been on the receiving end. Sympathetic nurses are a Godsend! When I was getting my colonoscopy it was the nurses who made it bearable. One of them had a funny accent. I asked her where she was from. She said, “The Ukraine.” Then while I was trying to ask her about her training (and she was injecting Versed into my IV) I fell asleep. But I thought she was a gol-darned angel! Nurses are wonderful! God’s gift to the healthcare system.

    But the only thing more wonderful than a caring nurse is one who can also be helpful. “Caring” and “helpful” are a tough combination to beat.

    The physical realm is constructed so as to establish physical laws that reflect spiritual truths. For example; for every action there is an equal and opposite reaction. That has analogous applications in both the physical and spiritual realms. Sort of clever aye? It tends to make one a believer in “intelligent design.” Physical laws lead directly to analogous spiritual laws. How cool!

    Many years ago I came up with what I called a definition of love. Since that time I have revised that to an “explanation of what happens when love is present.”

    When love is present we bare our self to another, and that other (person) uses that (knowledge) to make us feel good.

    If love is not present, that other (person) uses the knowledge that was revealed to cause pain… or to attempt to gain some control over us.

    When a dying patient’s mask is dissolved they are “bare naked” before us. We can use that to ridicule them, or we can accept them as they are and try to lead them in the direction of self acceptance, self love, and ultimately, dying (living) consciously.

    The tricky part to all of this is… brutal self awareness… self acceptance.

    Yes… there are parts of me that are ugly. Hospice nurses, loving and caring as they may be, also have a less-than-perfect side.

    A counselor I once had pointed out to me that it is often our dysfunctional self that is our greatest strength. Hospice nurses are caring. That is, at once, their most dysfunctional characteristic and their most wonderful characteristic all at the same time.

    Nurses “care.” That is why they became nurses in the first place. People don’t become nurses by accident. People who choose to become nurses have some vested interest in the profession; i.e. they enter a “caring” profession” because they were “caring” to begin with and the profession happened to fit their character. That is, at once, both their weakness and their strength.

    Becoming aware of this… self awareness… is neither good nor bad. It is simply being aware of who I am. I am a nurse. As a nurse I am inclined to describe my self esteem in terms of how much I care for others. If I were a farmer I would describe my self… reach for self esteem… by another route… another definition.

    But thank God for farmers! And thank God for nurses!

    Goofy as they may both be.
  4. by   Miricaro
    Req, you wrote:"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?"

    Short answer: YES, YES, YES, YES. These questions bring to mind a number of incidents while I was in my med/surg internship, when my preceptor admonished me for spending too much time with my patients while I was, in fact, trying to help them cope with their anxiety WITHOUT ativan. In other words, listening to them! Yes, I do believe that in many cases, the pressure is overwhelming for nurses to be efficient and task-oriented. This is one of the reasons I kissed med/surg goodbye and headed for hospice nursing, which demands the very skill which the med/surg environment doesn't allow and seems, in fact, to discourage altogether.

    Back to the article which prompted this entire discussion in the first place. It was an important one for me to read since I really haven't garnished enough experience to learn about symptom management. I agree that the article is rather clinical in nature and paints a picture of yet another task-oriented scenario, but it did give me a good knowledge base to start with. I go into hospice with many questions which the article answered very well, but I can appreciate where this discussion went: conscious death. Not something I expected I'd read about in a hospice nursing forum but very thought-provoking.

    On a lighter note:

    "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."

    I laughed at this one. I'm not male but I sure as h..ll can't multitask! It's been my demon ever since I can remember.

    "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?"
    Depends on whether or not what he said was right!!!!!

    Ciao.
    Miriam in Denver
  5. by   river1951
    Two Weeks on Yahoo! Health
    So, interestingly enough, there is suddenly a movie, purportedly on dying well- It is only guaranteed (at least in the release I read) to play for 1 week in So. Cal. We'll see what Hollywood thinks is a good death anyway.
    Glad to see more humor here, we can't afford not to have that in our bags in this profession!!!!
  6. by   req_read
    Being warned by your nursing preceptor not to spend too much time with patients is, sadly, a sign of the times. And as the baby boomers start hitting the healthcare system in large numbers it will only get worse. In a way, all this focus on symptom management is preparatory for what lies ahead.

    As this whole situation evolves it would seem logical to expect that patients & families of the baby boomer generation will have to take on more of the responsibility for their own care. Educating themselves will be one of the primary issues, particularly as regards the nature of dying process (which is the niche my books address.) Nurses simply will not have the time to address these issues. Besides, hospice nurse’s training has always been geared towards symptom management (as opposed to family systems, philosophy etc.) and will no doubt continue to do so.

    Hospice was originally set up to be holistic in its approach, but they are moving away from that (in practice if not theory) and I would expect more palliative care programs to emerge… which will probably be more narrow in scope… not to mention cheaper… more along the lines of ordering-off-the-menu as opposed to hospice’s smorgasbord approach. Some of you entrepreneurial types might want to give this some thought; e.g. hiring yourselves out to those who can afford it.

    But the numbers ($$$) just don’t add up to sustain current practice models. A few years back I heard about a study that showed more baby boomers believe in UFO’s than the likelihood that social security will be there for them. Like I said earlier in this thread, symptom management is probably about the best we can hope for.

    What will be lost (at least in government financed programs, but not necessarily in privately hired situations) will be nurses spending time with patients & families. By way of example, here is a short excerpt from the article that instigated this discussion.

    “…Mrs. Brown verbalizes some fears and concerns that are keeping her awake at night. She talks about her funeral and asks what her last days might be like.”

    One of the things I disagreed with about the author’s approach was this particular incident. Patient’s sometimes worry about how they will actually die… which is only natural. The author dealt with this by sending in a SW (who would not know peanuts about it) and then discussed what antidepressants and sleeping pills might be useful.

    You may recall that in the list of patients I gave who died consciously one was a 16 year old boy. Now, how would you talk a 16 year old into “letting go?”

    Once again, this post is getting kind of long so I will slash this story to the bare bones.

    I asked him what he feared most. At first he said nothing. I asked if his greatest fear was of actually dying… as in the mechanics of it. He said, “Yes.” I asked if he was afraid of smothering… feeling like he was being choked. He said, “Yes.”

    I worked quite a few years in ER & ICU where I saw people with respiratory failure die many times… as in, one person “dying” many times. People with severe respiratory failure often “code,” but manage to get to ER in time to be “saved.” We bring them back, and then they go through it all again later on.

    I explained to this boy that he had already been through the worst part of “dying” many times. Then I asked him to tell me what that was like. He thought for a second and then said, “It’s sort of like smoking pot.” His mother shrieked but I pressed on with our discussion.

    Again, I’m leaving a lot out but will cut right to the chase. I spent a fair amount of time with this boy and his family and the next time he “coded” he elected to stay home. His family stayed with him and all held hands as he left.

    Now I ask you…

    What would a social worker have told this boy? What good would antidepressants have done? And what about the approach of telling him, “Well, when the time comes we will narcotize you real heavy and you’ll never know.” Would that have eased his fears?

    In an ideal world nurses would have time to spend with their dying patients… to work things out… talk things through… get them to the point where they could step off this planet as a matter of choice.
  7. by   Katillac
    Quote from req_read
    The article begins with the question: “WHAT'S A GOOD DEATH?” Then answers that question with, “Most patients facing the end of life say it means freedom from pain and other distressing symptoms.” The author then proceeds on the assumption that this simplistic view has merit.

    The assumption that a “good death” is dying “free of pain and other distressing symptoms” is the equivalent of the philosophical point of view that a “good life” is one “free of pain and other distressing symptoms.” This is sheer and utter nonsense.

    Good symptom control in dying process is NOT the goal, it is a means to the goal. The ultimate goal in dying is the same as the ultimate goal in living; i.e. to do it consciously.


    It is not that symptom control is not important… it IS important. But I repeat, it’s importance is measured by the degree to which it accomplishes the real goal.
    My goodness. I would never presume to decide for my patients what the "real goal" (to use your phrase) of hospice care is; neither symptom relief nor a conscious death are universal goals of the hospice patients with whom I work. Were I to decide on a universal goal and work towards it I would be working my OWN agenda, not that of my patients. Sometimes it IS as "simplistic" as, "I want to die in my room that looks over the lake." Would I offer other goals as possibilities? Of course. But a good death would be most appropriately defined by the patient, whether conscious or unconscious, painful or painless, alert or palliatively sedated, and so forth.

    I believe that the response to what you've said here is largely due not to the fact that you shared personal experiences, but because you seem to say, no, you DO say that your definitions of very subjective issues are the correct ones. That rankles.
    Last edit by Katillac on Dec 5, '06 : Reason: Spelling
  8. by   req_read
    katillac…

    I apologize for rankling, but wanted to make a point… and yours is well taken.

    Of course if we take your point to its ultimate conclusion we could say that a pedophile who indulges his desires to the fullest and then commits suicide just before being apprehended lived (by his own standards) a “good life” followed by a “good death.”

    Actually, if one takes note over the long haul and observes what kinds of lifestyles yield what kinds of dying styles, predictable trends emerge.

    Life has consequences. If you touch a hot stove you discover that it hurts and will probably alter your behavior in the future. Similarly, if you hurt someone it is likely you will experience some “spiritual pain” somewhere down the line… if not before, then certainly during your dying process. And if the hurt you caused and the spiritual pain you feel as a result is sufficiently severe, the hospice nurse may have some difficulty controlling your pain.

    Not that she shouldn’t try… that is not what I am suggesting. But it may very well turn out to be a tough case. And should she succeed, it would probably be the result of addressing the root cause and not just covering it up with medications.

    However, you seem to be suggesting that covering up spiritual pain with medications might very well constitute “good death.” If that is the case then we could say that someone who commits murder and is executed by lethal injection (presumably pain free) achieved a “good death.” But I dare say that if we stand back and look at the big picture we could argue… without fear of unduly rankling anyone… that this was not such a “good death” all things considered… even though it may very well have been the best the patient could have hoped for under the circumstances.

    I understand the value of looking out the window at a lake, but my point is to look at things from a broad perspective. Looking at a lake is a fine thing, it really is, but it does not constitute “good death.”

    I keep getting this picture in my mind…

    I realize that in today’s hectic world hospice nurses are under a lot of stress. In order to streamline record keeping nurse’s notes often use check boxes wherever possible. So I keep getting this image of a hospice nurse who has just died and is waiting to be admitted into Heaven (or Valhalla or Paradise or whatever) and she is getting her pre-admit interview. She is being asked questions like…
    Did you see the lake? Check.
    Did you finish the crossword puzzle? Check.
    Did you make it to Janie’s wedding? Check.

    It’s sort of silly, I realize. But the point is, there really are things in life that are important… things that go beyond life’s little pleasures. Among the big and important items are things like; knowing who you are, living consciously, learning to create love etc.

    Life’s little pleasures are important… very important… just as symptom control is very important. But “knowing who you are” and “living consciously” and “learning to create love” actually do yield easier and more graceful dying processes. That is not just my subjective opinion or my own agenda. That is a fact.

    What rankles me is when hospice nurses… even some experienced hospice nurses… practice for years and never seem to notice that certain lifestyles actually do yield certain dying outcomes. It is not a moral judgment nor is it my opinion/agenda that particular lifestyles yield predictable dying process outcomes… it is simple fact.

    The person who goes through life doing nothing more than staring out the window at the lake… pleasant as that may be… will probably have some unfinished business during their dying process.

    Dying patients & families rely on hospice nurses to be the experts… to give them a clue as to what works and what does not. Unfortunately, all too many hospice nurses simply say, “I don’t know. No one knows. Here, take these pills… I’ll see you next week.”
  9. by   leslie :-D
    again, i have to agree w/you req.
    i do understand katillac's points however.
    especially where pt loads are maxed, there is little time for contemplative exchange.

    i am reminded of the many cancer survivors i've met.
    when treatment is over and take time to recover, they are all literally, changed people.
    struggling with cancer, everyone at one point, questions death and so, questions their life and its' quality up to the point of getting sick.
    it appears to be pervasive throughout the survivor community, that they have grown...different outlooks, more tolerant, more appreciative, etc.
    it is indeed, a spiritual growth.
    and it is a journey to get there.

    same thing with death.
    whether we as hospice nurses have the time for it or not, it still does not mean the pts are not summing up the quality of their life.
    but for many, it is personal and they choose not to share.
    sitting by the window and admiring the crystallized clarity of the lake, i can assure you, much is going on.
    if one has the time and the awareness, it can only help the pt die a more meaningful and fulfilled death, if they have someone to 'die' with them.

    yet in this day and age of quantity vs quality of pt-care, the latter is clearly a dying breed.
    too bad hospice businesses couldn't get hospice assistance in helping with the death of genuinely meaningful nsg care.
    i know when i go, i want someone with whom i can share my inner-most thoughts; and finally, spread my wings and fly.

    leslie
  10. by   req_read
    Thanks again Leslie.

    You know, I got kind of sick a few months back and thought for awhile there that this might be it. Do you know what I wanted to do first? Go fishing in the wilderness one more time.

    It's funny what seems important when you're in that place.
  11. by   river1951
    It has been rolling around all day in my brain since Katillac wrote this response:
    My goodness. I would never presume to decide for my patients what the "real goal" (to use your phrase) of hospice care is; neither symptom relief nor a conscious death are universal goals of the hospice patients with whom I work. Were I to decide on a universal goal and work towards it I would be working my OWN agenda, not that of my patients. Sometimes it IS as "simplistic" as, "I want to die in my room that looks over the lake." Would I offer other goals as possibilities? Of course. But a good death would be most appropriately defined by the patient, whether conscious or unconscious, painful or painless, alert or palliatively sedated, and so forth.
    My turn to rankle
    I think the goal of hospice is to help. And to each patient that will be different, except for 1 thing- they will all die. So, I think attempting to find for each person what they need for them to be ok with dying is part of our work. I believe because this is the work that is so undefined and it is the work we do despite what QM and JCAHOwant, it is seen as difficult and perhaps a little outre`. It is not cookie cutter medicine and it is not done by only paying attention to the physical symptoms only.
    Each person has a different death just as their life. To assist them to what is important-to them- what they want- (I'm there with you, req_read, I would go fish), is the job of hospice. Unfortunately the way our society is now with no one wanting to mention spirituality because someone may be offended, does not make our jobs easier. We pretend we are not spiritual beings and that it is sufficient to give meds and support.
    It is not. We have to have a lack of the proper boundary in order to love and listen well enough for trust to be formed and patients to tell us how we can really help them
    Be open,Katillac. I understand this metaphysical stuff is scary and wierd. It's ok, it's just as real as anything else.
    Caring is really all there is.
    Beki
  12. by   req_read
    Thanks river1951… it was getting awfully lonely around here.

    It is a well known fact that different people, observing the same thing, will see it differently. Defense lawyers use this to their advantage… when 3 people witness a crime they will invariably give varying accounts and a clever lawyer will use that to discredit them all.

    To one degree or another we see what we look for. Hospice teaches nurses to look for symptoms and address them largely with medications… so that is what they “see.”

    I have written 3 books (so far) on dying process and there is very little about pharmaceuticals in any of them.

    I have never seen the CHPN exam, but let me take a wild guess at its focus… pharmaceuticals?

    Speaking of focus…

    When one of your kids falls and scrapes his knee, what do you do? After checking it out and consoling him you try to divert his attention right?

    When I was doing hospice I used the same technique. For convenience of illustration we could say that humans have 2 parts; i.e. their physical self and there non-physical self. It is the physical self that is mortal. If any part of us gets out of here alive it won’t be our body. So the part of us we need to focus on and prepare for that adventure is our non-physical self... our body won’t be making the trip.

    We do have some say over what we focus on. When we are dying we can choose to focus on our body or we can choose to focus on our thoughts, feelings, history, relationships, expectations etc. Focusing on a dying body is really kind of a bummer. Dying bodies are uncomfortable, ugly, depressing and all-in-all, not very much fun. So when working with the dying I tried to deal with the body (symptom control) as quickly and effectively as possible and then change the subject.

    For example; I almost never took anyone’s VS. All that does is focus people’s attention on their body… which was the last thing I wanted to do. Nowadays I see things like “Pain Flow Charts” in hospice admission packets. I understand the theory behind such things but do you realize how that encourages… even forces… the dying to focus on their body?

    After your kid bangs his knee, has a little cry, you give him a hug and then he says, “Hey… look at that butterfly!” and starts to run off… what do you do then? Do you tell him, “Get back here young man! Now let’s talk about the pain in your knee.” Of course not! But that is what hospice encourages nurses to do with the dying. .. to zero in on the most depressing, hopeless aspect of what is happening to them and obsess on it… keep a gol-danged Flow Chart on it for crying out loud!!!! Lordy! Lordy! Lordy!

    And if I dare speak up and suggest this approach might be a little counter-productive, I am immediately confronted with a bunch of angry, defensive hospice nurses.

    Living consciously has mostly to do with honest self-awareness… self-analysis. Most people really don’t like to do that, but dying process forces us to do it whether we like it or not. Hospice nurses, of all people, should be aware of this. And if you look for it you will see that those people who are the most open-minded and who habitually practice honest self-analysis die with the least pain, least struggle, least anguish. Why? Because they are practiced at what dying forces them to do… they are already good at it.

    I do not promote conscious living/conscious dying because I think it is morally superior or because I read it in a new age book somewhere and thought it sounded good. I promote it because it works. It doesn’t just palliate, it actually helps.

    I often do “see” things differently… I am well aware of that. Maybe it has something to do with the fact that I am legally blind… I don’t know… but most people don’t “see” a lot of the things I do.

    For example: Helping the dying work through their unresolved issues gets them to where they can move on (die) sooner. When you finish your work here, you can leave. Conversely, not getting things resolved keeps people hanging on longer.

    Now… more and more hospice agencies press their nurses so they don’t have time to spend with patients sorting out life issues. The net effect of that is to keep patients alive longer… generating per diem (income.) Did you ever think about that?

    Here’s a good one…

    If you ask someone if they think they will ever die most will say, “Yes.” The question was addressed to their intellect and on that level we understand… intellectually… we will die.

    But if you stand back in the corner so-to-speak and quietly watch… observe people’s spontaneous behavior… you will “see” that subconsciously they do not think they will die.

    Why is that?

    Leslie… don’t give it away.
  13. by   Katillac
    Quote from req_read
    Thanks river1951... it was getting awfully lonely around here.

    I have written 3 books (so far) on dying process and there is very little about pharmaceuticals in any of them.

    I have never seen the CHPN exam, but let me take a wild guess at its focus... pharmaceuticals?
    Nope, you guessed wrong. It's focus is case and symptom management, involving multiple disciplines and approaches. You don't by chance happen to recognize that your focus on the spiritual is as dismissive of the other aspects of holistic care as you are dismissive of pharmaceuticals, do you? Let me take a wild guess. . . no.

    Originally posted by river1951
    Be open,Katillac. I understand this metaphysical stuff is scary and wierd. It's ok, it's just as real as anything else.
    Caring is really all there is.
    Beki
    What is it that you're asking me to be open to? I don't find that the "metaphysical stuff is scary and weird" at all, and I find that presumption really annoying. Your "it's OK" is pretty condescending, too; I really don't need the reassurance. But perhaps you know better than me on that, too?

    Interesting. Some want to be spared a focus on their own body, some want to be spared a nurse who wants the focus on dying a "conscious death". The point is, it's supposed to be up to the patient and not the practitioner, regardless of how many books they have written or what experience they have had.

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