Managing symptoms for a "good death" - page 6

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   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
  2. by   aimeee
    Great story, Leslie! Thanks for sharing your experience.
  3. by   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.
  4. by   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.
  5. by   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.”
  6. by   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:spin:
  7. by   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
  8. by   req_read
    Nettie…

    Hello down there! I just exchanged emails with someone in Australia. She was heading to the beach with suntan lotion in hand and could see smoke coming from bush fires, so I sent her a photo of my patio furniture… buried under a foot and a half of snow. She said it helped her feel cooler.

    You raise a good point.

    First, the categorical statement regarding dying consciously can be equated with the categorical statement that it is preferable to live consciously.

    Nurses often equate “consciousness” with a reaction to painful stimuli, but I am using it in the sense of being aware of who we are… which has largely to do with how well acquainted one is with the person hiding behind his/her own façade.

    It has to do with being conscious of why you do what you do. How well do you know yourself? For example: You are a nurse. Why? What is it about you that made you want to enter a caring profession? What is it about caring for others that makes you feel good about yourself? How does that nurture your self esteem? Are you conscious of the potential pitfalls intrinsic to that method of enhancing self esteem? If for some reason you could no longer practice nursing (don’t laugh… it could happen… it did to me) how would you nurture your self esteem then?

    In his ground breaking presentation on Family Systems, John Bradshaw quoted a line from, I believe it was the play- The Death Of A Salesman. The quote was (roughly): “The greatest tragedy of all is going through life and never knowing who you are.”

    While these considerations may seem rather academic or vague in the work-a-day world, they have definite implications when we are dying. Take for example the “successful,” wealthy CEO who has been envied all his life… then it comes time for his dying process and he discovers he is really not “better than” anyone else after all. Worse still, he now realizes he has been motivated largely by greed. He enhanced his self esteem with greed. Now he is about to leave the physical realm with nothing more than his consciousness, and what he is now (perhaps for the first time) conscious of is that he has really not been successful at all, but rather, he has been shallow and selfish.

    Now, this fellow may very well not want to be “conscious” while dying. Dying process forces… does not ask politely or merely suggest… it FORCES us to look at who we really are. This fellow may not want to look at that, so he is inclined to become “unconscious” if given the opportunity. However, the probability is that his “unconsciousness” will not last.

    Which is the great danger of assuming death “ends” life. It probably does not. So those who suppose death will somehow relieve them of bearing responsibility for who they are will probably get a big shock in the proverbial “end.”

    Consciousness is no easy burden to bear…

    “His was a great sin who first invented consciousness. Let us lose it for a few hours.”
    F. Scott Fitzgerald (1896–1940), U.S. author.

    But easy or not… like it or not… consciousness is what we are. The categorical statement that it is best to die consciously is really no different than a categorical statement declaring that it is best to know who we are… as opposed to, it is best to nurture grandiose self delusions and live your life in a perpetual state of clue-less-ness.

    And as always, the proof is in the pudding. Hospice nurses have front row seats from which to observe how this or that lifestyle and thinking pattern plays out… what works and what does not. This has nothing to do with ethics or morality, it has to do with what actually works. Hospice nurses see how people die… whether it occurs gracefully or with much suffering.

    Keep in mind… suffering works as a learning tool. If someone says, “Don’t touch the stove, it’s hot.” You could exercise trust and good judgment and not touch the stove. Then again you could lay your hand on the stove and leave a few layers of skin hanging there when you jerk your hand away. Either way you learn. But all things being equal, most people would rather learn with a minimum of suffering. Therefore it is best for hospice nurses to observe what works and use that knowledge to assist their patients in achieving learning (dying) with a minimum of suffering.

    Yes… some people would rather not be conscious of who they really are. If I lived my life the way some people do I’d rather forget about it too. But the question is: Is it possible to forget about it? Is it possible to never have to face your Self? Personally, I doubt it. But if you assume that death “ends” life, then perhaps you think differently. But realize this: If you make that assumption it is, in effect, a religious doctrine… not to mention, it is betting all your chips on one (rather doubtful) hand of cards. And the statistical probability is, your dying process will not be pretty.

    Michael

    Learning something that is both new and profound is nearly always frightening… which is why we try to avoid it.
  9. by   req_read
    Nettie…

    As for your 2nd post (re: your stroke patient) I would be inclined to agree with your assessment. Trust your gut.

    Michael

    I’ve studied now Philosophy
    And Jurisprudence, Medicine—
    And even, alas! Theology—
    From end to end with labor keen;
    And here, poor fool! with all my lore
    I stand, no wiser than before.
    Johann Wolfgang Von Goethe (1749–1832),
  10. by   leslie :-D
    even though there are many pts who choose to remain alert to extent possible, there are also those who will readily opt for a cocktail of meds, to take away the 'pain'....meaning the physical, emotional/mental, spiritual pain.
    so for those who choose the latter, that is a good death.
    highly subjective, wouldn't you think michael?
    what may be ideal to us, will make others run to the nearest train tracks.
    we typically die the way we lived.
    and so, if we lived our lives remaining as busy as humanly possible, not allowing one solitary moment to ourselves, we are not going to know how to handle the influx of feelings that we always tended to avoid.
    that's where the marvelous world of pharmacology can work its' magic.
    and i think that's the stark reality to many.
    no one can expound on what a good death is, except the one who is dying.

    leslie
  11. by   req_read
    Hi Leslie… good to hear from you.

    When I speak of good death I am distinguishing between the specific and the general (in favor of the general)… or between the relative and the non-conditional (in favor of the non-conditional.)

    For some, within the specific context of their situation, heavy doses of meds would be relatively good (relative to what their dying may have been like without them.) I have done it many times myself (given heavy doses) and induced very low levels of consciousness if not outright unconsciousness, and in some cases even death. Speaking specifically and relatively I would say that was, for those people, a good death. Speaking generally and non-conditionally however, I would not say that.

    My fear (particularly among newer hospice nurses) is that meds will become their first line of treatment rather than an adjunct or a choice of last resort. The article that instigated this dialogue mentioned that the pt was depressed and wanted to know how she would die. To my way of thinking, the nurse should first have spoken with the patient about her fears and discussed probable dying scenarios (not an appropriate assignment for a SW.) If the patient wanted to know what her death would be like the nurse should have taken the time to discuss that with her. If that had not worked, then by all means get out the formulary. However, all too often, meds seemed to be the author’s first choice of treatment.

    Meds are also useful adjuncts. Mitigating fear with meds can be very effective in getting a pt calmed down enough to discuss, and start working through, emotionally charged issues.

    It is very true that we tend to die as we have lived. A favorite saying of a long-time friend of mine is: A tiger never changes his stripes. And that is quite true… or at least it is from the standpoint of statistical probability. Strictly speaking however, a tiger can change his stripes any time he chooses… figuratively speaking. Actually, tigers can’t, but people can.

    Humans are possessed of a level of consciousness that permits choice. Once we become aware… or conscious of something… we have the option of exercising choice. If, like tigers, we operate on reflex, instinct or habit, we do not have access to choice… we just do it. That may be a statistical probability, but it is not written in stone.

    With consciousness we have choices, without it we do not. Therefore, unless someone indicates, either by their deeds or words, that they do not want to be conscious, it is better to err on the side of leaving their options open… so as to maximize their choices.

    Michael

    Far too often the choices reality proposes are such as to take away one’s taste for choosing.
    Jean Rostand (1894–1977), French biologist, writer.
  12. by   leslie :-D
    i can assure you michael, it is not just newbie hospice nurses who feel those moments of awkwardness.
    in the most gen'l sense, why did we become nurses?
    in its' most gen'l sense, i would suggest because many of us are familiar with the various aspects of suffering and so, we want to help. we understand.

    my biggest fear, should i ever require hospice services?
    that i'll get a nurse who fears death and so, knows how to make one die peacefully, via meds and maybe prayer.
    what the nurse does in effect, is project their fears onto the pt and literally makes a good death-just so they'll appease themself in the process.
    i'll get the nurse who doesn't even begin to understand "what was the purpose of my life?" or "i never became a Christian: am i going to hell?"
    i'm talking about very basic and reasonable questions.
    i'll get the nurse that responds with "here, it's time for your haldol, thorazine, ativan, roxanol or worse, "you shouldn't be worrying about that now. you have enough on your plate".

    sadly and honestly, i truly don't think there are many hospice nurses that find comfort in the spiritual or existential.
    i'm recalling one poster who suggested we post this thread under "new age".
    new age?????
    since when is discussing the qualities of one's life, new age?
    since when is discussing the finality of death (on this earth), new age?
    since when is perusing one's actions and inactions during the course of their life, new age?
    i sit here in shock, albeit not yet speechless.

    and i truly, truly hope i am not offending any of the readers here.
    what i speak of is within its' most gen'l scope of consideration.
    i am speaking of hospice nurses nationwide, worldwide.
    although there are cultural differences, some things should be universal.
    and that is to give our dying patients, their final say.
    if they choose to talk about the weather, then have the grandest conversation one can muster, about the weather.
    if they want to avoid, let them-never pressure them for something they're not ready or able to share.
    but if they want to know what it's like to die- tell them the process.
    but do be kind in sparing the undesirable details, if you anticipate someone will struggle.
    even if they perceived themself to be a horrible parent, tell them they were loved-that they made a difference in their children's lives. (of course you need to know they made a difference in whatever they berate themself with).
    there's always, always something positive to contribute.

    i remember one time i was caring for a pedophile who had served his time in jail but knew, he just knew, he was doomed to hell.
    how did he know?
    because he was a Christian, God-loving man, and that he had upset our Savior very much.
    i just stated the facts as i believed them: that God loves you, no matter how bad the sinner; therefore, you are worthy of love.
    he asked me what my prayer for him was.
    i told him i hoped that he had no memory of what he had done; and in his next life, that he would minister to underserved, rejected, abused children.
    and i wished him good mental health.
    he died, not fearing hell so much but rather, as if he might have a second chance. hopeful. re-energized.

    as michael has been trying to say, there is so much we can do for our pts.
    and anything less than our 100% best, merely serves to minimize the optimal dying experience.
    we both lose.

    leslie
  13. by   nettie01
    Thanks Michael,
    Your post is thought provoking. I appreciated Death Of A Salesman and relate to what you're saying.
    It's refreshing to be able to talk about death in this forum when we're part of a "death-denying society" (Kubler-Ross); many in my immediate entourage don't want to discuss it. I think I know myself well when I say that my concern isn't for my own death - it's other people that I see dying in various states, sometimes in despair when patient and family are distressed - I see plenty of less-than-optimal deaths. For me, my faith is in "I am the resurrection and the life. The one who believes in me, even though he or she dies, will live. And everyone who lives believing in me does not ultimately die at all." (Christ's words, Message version)
    I'm pretty excited about that and, (I don't often say this) but I'm looking forward to dying - and I'm not depressed. I'm happy to hang around 'til my name is called.

    I see people who seem to have usefulness as one of their main values in life. They judge others who aren't accomplishing much, according to their terms. "He's no good, a bit of a no-hoper"; and then when they themselves become "useless" because of disability they get depressed and want to die because they're "Past their used-by date", no longer useful to the world, just a burden.
    Well, I'm sure we're all familiar with that.
    So I totally agree that we need more than our job (e.g. nursing) to nurture our self esteems.
    Regarding being happy to die, I think it would much harder to live with (my worst fears) a dense stroke or tetraplegia than to die. But even in that my spiritual life (God) would sustain me.

    But I don't have much success in helping people in their end of life transition. It's a real shame that many people die in environments not set up to help the dying - eg an acute medical ward where I work. The hospice service in New Zealand is a Cinderella-underpaid one.
    I lamely ask if they want to see the chaplain. Often people say no, sometimes yes; many people are uninterested in formal religion. Social workers, yep. Sometimes I offer to pray for them, sometimes the offer is taken up. Many people I meet who are getting nearer death don't seem to have a decided approach. "I'll just wait and see" they say.

    Leslie, I've learnt something from your posts thanks, e.g. about intractable pain actually having a psychological or spiritual root.
    You're also reiterating what I thought:
    "no one can expound on what a good death is, except the one who is dying. what may be ideal to us, will make others run to the nearest train tracks."

    Now, about the physical aspect of dying (in reference to Michael's comments about conscious death), it's my simple observation that people go unconscious to some degree as they get nearer the Big Transition. It's not always because they are loaded up with sedatives either. I just thought (from observation) that's how it was. Haven't worked in a hospice though.
    Jeanette


    "The greatest tragedy of all is going through life and never knowing who you are."

    Consciousness is no easy burden to bear...

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