Managing symptoms for a “good death”

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.

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.

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.

Katillac…

The most common way of dealing with dying in our society… a death averse society… is to avoid it as much as possible. The majority of people try very hard to not think about death and dying at all… until they absolutely must. And when they absolutely must they want all of the answers immediately. So it is quite natural for the dying to turn to the “experts” for advice. They have every right to ignore any or all of that advice, but it is a natural response.

If you have a horse who is giving you some problem you call a horse expert. It would be rather disappointing if you called in a horse expert, paid him his fee, and then all he had to say was, “Well that is up to the owner not the practitioner.”

I once had a counselor who I noticed nodding off while I was talking. My life may be boring but I thought his dozing represented a poor return on my investment. He never seemed to have anything to say and I finally told him I thought I could get as much out of taking his photograph and hanging it on the wall, then talking at it for an hour a week… plus it would be cheaper. He gave me an explanation filled with professional sounding jargon that basically came down to his not wanting to interfere in my life.

It sounds to me like your professional philosophy is similar to his. You seem quite adamant that your job is limited in scope.

I do wonder why you use the term “conscious dying” as though it were an epithet. That is strange coming from anyone, much less a hospice nurse. Actually, I never pushed anyone to “die consciously,” I just used techniques that would make that more possible if they so chose.

Living and dying consciously is widely recognized as a good thing and I must say that I am surprised to find myself having to defend it. Perhaps you find the term distasteful simply because it was I who used it? If so you might ask someone in the mental health field whether they consider “knowing who you are” to be a good or bad thing. I doubt they will tell you, “Oh no… personally I’ve always been a devotee of self-delusion.”

What I have said about pharmacologic symptom management (and will say once again) is that it is a means to an end, but it is not the end game.

Your approach, if I understand it, is that symptom management IS the end game and the rest is up to the patient. Am I correct in that assumption?

What I am having trouble understanding is why you seem so angry. You have addressed almost none of the interesting points raised in this thread but have chosen instead to attack those who raised them on a personal level. What is that all about?

OK, one last try and I'm done with this.

From your first post, you've maintained that the ultimate goal of hospice is to see that people die consciously.
"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."
I simply disagree that it's appropriate for you or anyone to decide what the goal for all hospice patients is. I don't use "conscious death" as an epithet; it's just your phrase for what should be a universal goal.

As far as the horse expert analogy, I expected my vet and trainers to offer me options and let me decide, not presume to make the decision for me after deciding what my goals were.

I'm not sure if I am communicating so badly that it's logical to come to the conclusion that symtom management is all there is to my practice of hospice nursing. There is certainly much more to it, including spiritual support and exploration IF THE PATIENT DESIRES IT.

One specific example of my practice: through my hands, I have felt the chaos in the mind of someone who was having a huge struggle at the very end of his life, drawn that into myself and watched as the person relaxed and went on his way. I also did the hard work afterward of resolving the tumult I had brought into myself. Had he agreed earlier to work toward becoming more self-aware, he probably would have died more comfortably. But that wasn't my call to make. Was I colluding in his self-delusion? Not at all; I was respecting his preferences, and still supporting him as best I could.

I haven't attacked anyone here. I haven't made it personal at all. I've responded to what several people have written, both content and tone. I disagree. And I became annoyed, not with anyone personally, but with the presumptious and condescending tone I recognized, as well as the stance that was taken by two posters, and I indicated that.

And now, I wish you the best, and I am respectfully, quietly and calmly done with this.

Okay… so we went through all of that to learn that you disagree with my original thesis. Might I ask why?

Also, you seem to have gotten the impression somewhere along the line that I advocate ramming my thesis down patient’s throats. Actually what I said was, I use techniques that make that option possible should the patient so choose. I also said patients have the option of disregarding any or all of the advice they are given. So your emphasis on “IF THE PATIENT DESIRES IT” has nothing to do with anything anyone posted here.

And if you have not attacked anyone I would certainly hate to be on your bad side.

katillac…

I am intrigued by the paragraph in the middle of your last post; i.e. the “One specific example.”

I realize you were probably a little upset when you wrote it, but I’m not sure I’m following the story line. I wish you would elaborate because it sounds very interesting… the kind of thing I had hoped could be shared in this forum… safely… a sharing of personal ideas, experiences, thoughts etc.

Hospice nurses are exposed to some of life’s most fascinating and dramatic events… yet there is this reluctance to share. Why?

The poet said, “Tis better to have loved and lost than never to have loved at all.” Love involves a willingness to be vulnerable… to share… to get hurt and still be willing to take another chance.

hi im a nursing student from the philippines. One of requirements is making a nursing thesis.... We decided to focus on the effect of music therapy on the hospice patient. The thing is we dont have any idea of how will be able to start the experimental study and what music we should use. can you give us some advice regarding the therapeutic care/palliative care they use as a nurse to help those terminally ill patient. God bless and we are hoping for your reply...
bogsnurse from manila philippines.

ei im a student nurse from the philippines and hoping to graduate on 2008 batch and also a new member of allnurses.com. We are having a thesis about the effect of music therapy on terminally ill patient and planning to visit hospice institution. Can you give me some advice to help me and my group? what to expect? what the things we should or not do? What kind of therapy/communications and also what the best thing to do to help them and even the staff... thank you and god bless!

Just to put this thread to bed before it dies on the vine…

“Conscious dying” is the epitome of patient-directed care. It implies, by definition, that the patient chooses to move on… cross over… die… whatever you choose to call it. It represents the pinnacle of patient choice.

Hey Katillac

Wow. What a mean comment!

Even first-year nursing students know that if a patient's in pain, vomiting, SOB, or anxious, they're not going to even be able to think about "the real goal." Were you absent from Nursing 101 the day they taught Maslow?