Managing symptoms for a "good death" - page 12
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
Mar 9, '07Beki…
I don’t think it is just your area. Follow the money.
Docs are reimbursed largely on a per visit (in office) basis. No office visit = no reimbursement. When the patient can no longer make it to the office that often corresponds with the point at which doc is willing to certify terminal status. If you are having trouble getting a patient certified, tell them to stop going to the doctor’s office. Voila! Certification will soon follow.
Where I grew up the lucrative jobs were working on the line at the chevy plant. It was brutal, mind-numbing work, but those guys made the bucks! They also had more paid vacation & benefits than anyone else in the area… not to mention cabins up north, complete with boats, snowmobiles & motorcycles.
That business model has taken over medicine… and is well on its way to taking over hospice.
Time is money… but there is a problem. Rookie nurses tend to be hopelessly idealistic. They assume “caring” means spending time with patient/families. How quaint… how “retro.”
It was stated earlier (somewhere in this thread) that abused children typically defend their abusers. Why!!?? How could that be?
Simple… and you don’t have to look any farther than your own field; i.e. hospice.
If caring means spending time, not spending time = not caring. Obviously, the business people have to do a little re-defining of terms before this can become lucrative. Little by little, not spending time (caring) gets replaced with the concept of non-interference… and rushing through visits gets replaced by the concept of “expertise.” What goes in as a rookie wanting to “be with” patient/families comes out as an “expert” who can adjust a med regime in two shakes of a lamb’s tail. Cha-ching!
And of course if anyone dare question this methodology the first to defend it are the nurses (abused children.)
As Beki warns, self-awareness is depressing. Then again, it is the only route to making things better; i.e. the only thing worse than self-awareness is not being self-aware.
Have a lovely day.
Mar 14, '07This is a philosophy you are describing, namely that anyone who has unresolved issues will have a conscious death if and only if those issues are resolved. Based upon the stories you shared this appears primarily to be patients who have been involved somehow in the death of another or others. It raises certain questions. Do you believe that only if a patient is conscious when they die can they have experienced a good death? Are we to teach families that their loved one did not have a good death and must have had some unresolved issues related to terrible things they did if they do not die conscious? Are only people who did terrible things but then who resolved those issues capable of experiencing a good death in the end?
What exactly is your interpretation of the prisoner's remark about not dying? That was unclear to me. He did, after all, die. Are you saying he died but didn't die? Please explain.
Mar 14, '07sharlyb…
No, you are incorrect. I am not describing a philosophy when I talk about predictable outcomes in dying process. I am relating (anecdotal) data observed in the field and drawing conclusions based on that data. I have repeatedly asked other hospice nurses to contribute the fruits of their experiences & observations in an attempt to broaden any conclusions that may be drawn, but have received very few responses.
This thread is (so far) on its 15th page. In it I have described my notion of “good death” repeatedly and in great detail. If you are still confused on this issue I may not be able to clear it up in yet another post… but I’ll try.
In regards to your comment- “What exactly is your interpretation of the prisoner's remark about not dying?”
What I have observed in the field (repeatedly) is that as patients get closer to actual death they frequently begin to “see” things we cannot. In effect, they often seem capable of seeing where they are going. The consensus definition of death is (in brief): the cessation of life.
As you state- “He did, after all, die.”
This gets into the issue of the definition of “death.” I presume (from your comments) that you subscribe to the consensus definition. This definition infers that people are nothing more than bodies and that when the body dies, that person’s “life ends.” Contrary to this definition, dying people often reach a very difference conclusion based on what they “see” shortly before death; i.e. they conclude that they are not going to cease to exist after all.
For a more in-depth description of the perspective exhibited by many people in the latter stages of dying (and accepted by many hospice nurses) go to the following URL and read the essay on that page.
Assuming that death “ends life” is a philosophy… a personal belief… a religious doctrine. If you know of a scientific study somewhere that proves, beyond all doubt that “life ends” with the demise of the physical body I would certainly appreciate knowing about it (along with the rest of the world.) It is true that BODIES “end” at (physical) death. No one could argue the merits of that insight. In which case hospice might consider changing the phrase they use to describe the care they provide to – “end of body care.” That would be accurate. But “end of life care” is a statement of personal belief, religious doctrine or philosophy. It is certainly not a statement of provable, scientific fact.
Current cutting-edge scientific thinkers (in the fields of quantum physics and the study of consciousness) now theorize that “life” IS consciousness, and that all physical manifestation is a product or projection of “unified consciousness” (see the works of Fred Alan Wolf, PH.D., Dr. John Hagelin, Dean Radin and others.)
Ultimately, we cannot know for sure what lies beyond death… until we die of course. Until that time comes we can only speculate and theorize; i.e. philosophize about what we suppose is “over there.” However, what we can do (in the meantime) is observe dying people and collect raw data. Theoretically at least, hospice nurses have access to this valuable, raw data (although for some reason are reluctant to share it with anyone.)
A very small handful of hospice nurses (and I) have shared some of our personal observations in this thread. One of the conclusions I have drawn from those observations is that those dying patients (as I have stated repeatedly) who possess (by whatever means) a higher degree of self-awareness are more likely to die peacefully and gracefully than those who do not.
One of the difficulties in carrying on meaningful give & take on this subject has to do with definitions. For example; after working a number of years with dying people my personal definition of “death” does not even resemble the consensus definition. Neither does the term “life” as far as that goes. The dictionary defines “life” in biological terms… I define it in terms of consciousness. Judging from some of the posts in this thread, many hospice nurses (as nurses are trained to do) think of consciousness simply in terms of not being asleep, although we know from studying EEG’s that some sort of consciousness is going on even then. Most often, nurses think of consciousness in terms of a response to painful stimuli. And it is very common for the general public (including many nurses) to equate unconsciousness with “peacefulness.” How many times have you heard someone say- “Oh you know, he died so peacefully.” When in reality his brain function was so poor that he could not respond even to pain. That is like assuming the patient who has expressive aphasia is happy.
When I speak of “consciousness” I am using it in a much broader sense. For a better idea of how I think of consciousness I suggest going to the website below and listening to an audio quotation of Andrew Nichols, Ph.D. (scroll down to the bottom and look on the right-hand side of the page. Click below.)
I think (sharlyb) that my views on these various topics are very well documented (in this thread and others.) Perhaps you might share some of yours.
Mar 17, '07Hi all,
I am a nursing student just about to graduate and thinking seriously about pursuing a career in hospice. It looks like I am late in joining this thread but I want to let you know that I appreciate everything that has been discussed here and I agree that it's all stuff that needs to be faced and brought out into the open if there is ever going to be any real closure or peace in the end. I commend you all for speaking your opinions and for working as hospice nurses. What a privilege.
I would like to add that I also think it's interesting that many people have not joined in this thread and find the observation interesting that perhaps because it's too "spiritual" and not religious enough, it's driving people away. But I for one consider myself religious AND spiritual, and I never once considered the topics here too new age or anything of the sort. Obviously these are all things we all eventually need to face, and it's better to do it consciously and with some amount of choice than be forced to deal with it all in the end.
I would like to add that I many times feel alone in my beliefs and my philosophies about life - and I feel that I have found some similar souls out there in you all who agree with me about what's really important rather than the materialism that pervades our society and the masks that we all put on. What a refreshing dialogue. Thanks to everyone for the good reading.
Mar 28, '07The lack of participation in this thread (by hospice nurses) is a real eye-opener. There are a variety of influences of course but on the whole it indicates that hospice nurses are no more comfortable with an in-depth discussion of death than anyone else… which is surprising… but then again, not really. After all, nurses are people too.
The first lecture I remember hearing in nursing school was on- the difference between sympathy & empathy. At the time I thought it was interesting. All these years later I realize it was profound.
Sympathy involves feeling “for” someone; e.g. feeling sorry for, feeling bad for, etc. But there is still a separation there. In sympathy one does not feel the same thing the other person (patient) is feeling.
In empathy one feels the same thing. A man can sympathize with what a woman goes through in childbirth. A woman can empathize.
In empathy there is a connection. In sympathy there is a separation.
Hospice nurses sympathize with their patients very well (just check out the other threads in this forum.) When the more superficial aspects of caring for the dying are brought up, participation is fast & furious. But when the conversation reaches a certain depth; i.e. the depth where it involves “me” (because “me” is going to die too) and the discussion gets personal, then there is relative silence.
And if the silence is broken it is often done by someone who is defensive and angry… attacking the messenger rather than addressing the message. These are the ones who angrily insist it is the “patient’s death…” thus re-establishing the safety of separation. It is “them” we are talking about here… not me!
The typical hospice nurse’s stance seems to be: I can sympathize with “them” (those who are about to die) but I will not empathize (because I am not prepared to address the fact that I too am dying.)
“Experience comprises illusions lost, rather than wisdom gained.”
Joseph Roux (1834-86), French priest, writer. Meditations of a Parish Priest, pt. 4, no. 28 (1886).
Mar 29, '07Point well made. I am so simplistic, that at times I have thought the lack of caring equals lack of being able to put yourself in another's place, not the denial you will ever be in that place yourself.
Sounds very convoluted but I know what I mean.
I guess I equated it with being unimaginative, not scared. I thinnk scared is right. I am scared to die too, but I know I will. I hope I've done everything I needed to for my loved ones, but I'm not perfect. My job has taught me to not be a procrastinator- I've given my sons the heirlooms I want them to have. I tell my family every day how much I love them. I tell my coworkers and friends how much I appreciate them. These are all things my job has taught me. Now, when they tell me I'm terminal, I don't have to do anything different.
You're so right Michael. empathy is the most important thing. I used to believe it was caring but I know folks can care and still turn tail and run, it's that darn human nature of ours...
I'll be frank, I'm a little fatigued with it...
Mar 30, '07Hi River…
It is always so good to hear from you and what you are thinking.
As you say, your job taught you to think in certain ways. Those ways are not normal (defining “normal” here in terms of statistical probability or prevalence.)
We are all, as the saying goes, a “dead man walking.” In my own work I observed that there are basically just two kinds of people in this world; a) living people and b) dying people… and those two groups see the world very differently. This concept could be rephrased to: There are two kinds of people in the world; a) dying people and b) dying people who are aware of it.
I also realize that, over time, I have adopted the world-view of the dying. In other words, from hanging out with dying people I now look at the world the way they do.
You might think: Gee, that’s awful! How sad that dying people’s point of view rubs off on a person if they are around it too much… kind of like small pox.
Actually, the way dying people see the world is much more sensible, optimistic and hopeful than the way “living” people see the world.
I would have thought (before my involvement in this forum) that more hospice nurses would adopt the world-view of dying people. Apparently not. I was wrong. Of course there are exceptions to every rule… aberrancies or “flyers” in every group (Beki… did you realize you are an aberrancy?)
It is hard not to be influenced by consensus thinking. It is all around us; e.g. on the news, in our daily conversations and espoused by learned experts in academia. We are marinating in it, and venturing away from the consensus is truly frightening.
“All growth is a leap in the dark, a spontaneous unpremeditated act without benefit of experience.”
Henry Miller (1891–1980), U.S. author. The Wisdom of the Heart, "The Absolute Collective" (1947).
Just a few days ago, while scurrying around the house and not paying much attention, I happened to hear the tail end of a report on cable news about a study… I think she said it was done on a group of nurses… who were given a daily aspirin. You will all be thrilled to know that the study revealed “a 25% reduction in deaths from all causes.”
Now, I am no mathematician… and I certainly am no statistician… but when I juxtapose the statement, “a 25% reduction in deaths from all causes…” with the known fact that the mortality rate here on Earth is 100%, my brain just sort of turns to jelly. Somehow I just cannot make those two statements coalesce.
The thought that somehow “I” (if I play my cards right and mind my P’s & Q’s) can avoid death IS the prevailing consensus thinking pattern. Not on an intellectual level mind you… if you ask someone out loud, “Will you ever die?” they will invariably answer “Yes.” But if you quietly observe their behavior you will see that their underlying thinking pattern is just the opposite.
I once sent a query to Charlie Rose to see if he might be interested in my books. His people expressed some interest but within a few days he (Charlie) had emergency cardiac surgery (he was in France at the time.) Since then I have heard nothing from him or his people… but interestingly enough, I have noticed that he has had programs and guests (experts) on the subject of longevity. In other words, Charlie’s brush with death has motivated him to seek out ways to avoid it.
Which is, as you say, only human.
While working in Intensive Care I often observed people in their 80’s and even 90’s, who had 2 or 3 different terminal diseases, expressing complete, total and utter amazement that they might actually die. Indeed, that thinking pattern would seem to be the human, statistical norm. I would have thought a larger proportion of hospice nurses would demonstrate some variance from that thinking pattern, but apparently I was wrong.
A couple of days ago Charlie Rose interviewed a distinguished panel of experts on longevity… leading scholars, mostly from med schools. At first I thought it was funny, but as it went on the level of absurdity reached the maddening point. Finally my wife ordered me from the room (I was getting out of control.)
The maddening thing is, what is often championed by certain academics (usually medical) is the equivalent of the punitive theology espoused by some religious groups: i.e. that death is some sort of punishment… or at the very least, the result of a screw-up on your part. The core of this theology is: IF you die it is your own darned fault… you are either bad or stupid... probably both.
This perspective causes untold suffering among the dying (which happens to be us.) In other words, it is not simply a humorously idiotic perspective, it is actually harmful… hurtful. It causes unnecessary pain.
Ironically, much of the hard work of helping the dying to cope with what is happening to them involves undoing the damage done by science and religion.
Death is not taken seriously when it is thought to be avoidable. Conversely, when its inevitability is fully grasped and accepted, one begins to think about it more completely… more rationally.
“It is impossible that anything so natural, so necessary, and so universal as death should ever have been designed by Providence as an evil to mankind.”
Jonathan Swift (1667–1745), Anglo-Irish satirist. Thoughts on Religion (1768).
The condensed version of Jonathan Swift’s comment would be: Death is a good thing.
It is often painful (psychologically if not physically) and nearly always inconvenient, but on the whole it is a good thing.
The consensus perspective of death is that it is bad… which is rather like saying it is “bad” to graduate from high school. What if your mommy told you, “Don’t ever graduate from high school darling… if you do, you will cease to exist.”
The funny thing is, in a way she (mommy) is right. The high school version or phase of “you” will indeed cease to exist (thank God!)
River… would you mind enlarging just a bit on your reference to being “fatigued with it.” I think I know what you are talking about… but I’m not sure.
Mar 30, '07Michael et al,
Fatigued with it, I know was being a wise butt being fatigued with human nature- it is very limiting.
That of course is why we just need to help each other along thru this difficult life.
Aberrancy? Michael- that's harsh.
May 5, '07I just have a quick question about Haldol use in Hospice. Why is it necessary to give someone Haldol even when they are already getting Zyrtec?
May 13, '07I thank you very much for this article. As a new hospice nurse, it help me a great deal.
Aug 18, '07
Aug 18, '07Quote from earle58Thank you SO much for posting the link to this article, Leslie!
For me, one of the more thought provoking pieces was, "It is therefore useful to keep in mind the distinction between death as process, event, and status. It is also important to consider perspective: who judges this death to be good or bad? Society and individual do not necessarily share the same view, nor do physician and patient."
I'll be thinking about that during a busy weekend on call.