[finn11707]

Michael,
I beg to differ with you about your feeling that you have been focusing on the wrong crowd. Nurses drawn to Hospice work ARE ripe for this learning. Most I know believe this work is a 'gift', though they may not exactly understand what draws and keeps them here. Many have experienced losses in their own life. Perhaps have witnessed the help of hospice for their loved one and now want to give back. Some have become disallusioned with the nursing profession or western medicine practicioners stubborn lack of comittment to the wholeness of our being and its bearing on health and illness. Most nurses struggle to gain understanding and perspective of their work through the model they have been given--western medical model. Nursing schools and even hospice training programs are not very good at developing a psychosocial understanding of dying. Certainly, there is not much thought given to the benefit of encouraging nurses' to develop self understanding. Nurses' basic love of nursing is generally based in wanting to help others and underlying feelings that it somehow helps them to help others. But this basic understanding and way of giving can really burn us out if we do no grow with the experiences. Sadly, the cultural norm of nursing in most organizations, does not encourage nurses to care for themselves. In fact, there is often blatant disregard or disrespect toward nurses who struggle to cope; AND toward those who 'care too much'. We have all heard variations of the comment-- "...professionalism requires that we do not get that involved on a feeling level..."blahblah. I once worked with a hospice nurse who was reprimanded for making a f/u support visit post death to her patient's family who's young daughter had died after a difficult course of illness. The same agency did not believe it was healthy for their nurses to see the same hospice patients repeatedly. They 'mixed up the assignments' in effort to protect nurses from becoming overly attached and then burnt out.
Years ago, I worked ICU. One very elderly dying man came in one day, with his very attached family who asked the doctor to do everything possible to save him. That request was quite up this doctor's alley, but acknowledging he was dying and supporting the family toward acceptance wasn't. The patient asked us to let him go several times during the day as the doctor continued to performed several invasive procedures. The patient finally died when the doctor, finished doing everything he could think of and diagnosed that the patient was dying. The family was called to the bedside now with the MD announcement that 'we had done everything we could to save him'. He told his family goodbye and then died. I left ICU because of that experience.
Nursing culture denotes that if nurses scrutinize feelings too much, we will become ineffective. Perhaps, similar to the societal attitude that women are weakened by their tendancy toward emotionality. Sure, if we go toward the light, we will die....but only by going there (with our patients) can we find the truth, enlightenment and healing to truly engage in this work.
So Michael, I urge you to consider a more effective stage whereby you can lead hospice nurses toward this discovery and growth. They (we) have already acknowledged the importance of the Hospice work. They (we) struggle with allowing themselves (ourselves) to focus on the emotional side and have not found the voice to express all that is there. How can we fully and effectively attend to this work of dying if it is not more fully embraced and understood by us? Training for volunteers...fine. I have met loving and open volunteers. But the work can only be moved closer to what it should be when nurses, social workers and management team are growing towards the light.

Where I work, there is one social worker who is very devoted and enlightened ---also one chaplain --who left but is considering returning as we have an opening in the bereavement program. They are responsible for moving me toward this greater awareness and embrace of hospice work.

We desperately need conferences and retreats for hospice workers to focus on this. I have said this before...Are there any CEUs along this line in NM??? I know many who would attend...Warmly

[req_read]

finn…

Where in the world did you come from? So exceptionally insightful, articulate and persuasive!

Being discouraged to the point of despair is unavoidable. The same hidden agenda of greed that has brought wall street and our entire economy to its knees is operative behind the hospice scene as well. We see, in this very forum, newbies showing up all the time, giddy at the thought of a niche within the healthcare system where caring might actually be permitted… but I cannot help but wonder what happens to those people as they immerse themselves in the system. And of course there is always that bolus of humanity known as the baby boomers, about to bury an already faltering healthcare system beneath their shear numbers.

A one-size-fits-all care plan and a very limited, standardized drug regime with a staff that does not have time to even ask where the pt/fam is from is probably about as good as we boomers can hope for.

However, there is an up-side to all of this…
The good that could, at least potentially, result has to do with responsibility. More and more people will be forced to assume responsibility for themselves… and that is something that has long been lacking in our healthcare arena.

You mentioned you used to work in ICU (so did I) and one of the things that slaps you in the face in ICU is the lack of responsibility assumed by pt/fams. They are quick to say (even demand) that “everything be done,” without the slightest notion of what “everything” may cost… either in dollars or suffering.

One of the great debates of our time has to do with whether we ought to adopt some sort of nationalized healthcare… to some degree or in some form. But the keystone that may determine whether that is even viable is responsibility. Are we even capable of taking responsibility for deciding whether the proverbial “everything” ought to be done… or not? And the foundation upon which the capacity for making such decisions is none other than a good understanding of the nature of “life” and “death”… which at the moment is almost completely nonexistent in our culture.

When our healthcare and hospice systems are overloaded nearly to the point of collapse with baby boomers, it just might start to dawn on some of them that perhaps they had better start educating themselves… start taking a little responsibility for themselves. They just might start thinking, “What are life and death anyway? Maybe I should research this a little bit.”

It could happen. Certainly all the factors are falling into place leading in that direction.

Conferences and retreats? In NM? Not that I know of. I know it sounds like a remote and mystical place… after all, it is the “land of enchantment,” or what some of us used to call, “the magic kingdom.” But to a large degree our modern media and communications systems have homogenized our society. Hospice in NM is the same as everywhere else… scrambling for a buck. Plus now we have the high price of travel (gas) so going to conferences is rapidly becoming a thing of the past. However, we do have this non-physical way of conferencing… forums etc. I realize the non-physical mode of doing things is, in some ways, less satisfying. Then again, it is cheaper, faster, encompasses a much wider audience… and you don’t have to worry about how you look, or even whether you have bathed recently. Non-physicality does have its conveniences.

“We praise Him, we bless Him, we adore Him, we glorify Him, and we wonder who is that baritone across the aisle and that pretty woman on our right who smells of apple blossoms. Our bowels stir and our cod itches and we amend our prayers for the spiritual life with the hope that it will not be too spiritual.”

John Cheever (1912–82), U.S. author. John Cheever: The Journals, "The Late Forties and the Fifties" (ed. by Robert Gottlieb, 1991), entry for 1956.

Michael

[finn11707]

Michael--By forums, do you mean tele conferencing? Or meetings of hospice workers within an area as affiliated with medical centers? Or, what we are doing now?

I agree, this is an excellent way to communicate and can help us grow if we have already recognized the need. Still, there is something about a fellowship of people, joining together, that can create that atmosphere for 'conversion' and draw us to the light. It is sometimes difficult to 'feel through words' if one is blocked, as I believe so many stressed nurses are...My best learnings come from experiences which I can hold in my mind's eye. eg.-There is a lovely place on the Northern California coast --COMMONWEAL--which offers spiritual retreats for people dealing with cancer. Recently, they have added retreats for professionals in the caregiving field. These retreats offer CEUs to nurses, MDs and therapists for 'Mindful Meditation'! The focus is to guide participants in learning several simple meditation techniques focused on listening to and learning from your inner voice--'the silence between the lines'. The physical site was the former RCA intercontinental broadcasting station years ago; set high on a cliff side overlooking the ocean with groves of ancient trees. There, you can experience in all senses--the smell and sound of the ocean, wind, trees--cradling your journey of quiet self reflection. I envision retreats something like this for hospice workers. I know you have honed these skill through your journey Michael, but I believe most nurses have difficulty spending time there. And when they do spend time in reflection, may not know how to make it a journey of healing. Perhaps that is sometimes what nurses come to hospice hoping to find. I don't mean to discount the great strengths nurses have within. But, most need some good mentoring to make that necessary journey of self discovery, thereby arriving at a place where hospice work is seen for all that it is. I don't believe nurses are in hospice just to make a pay check. Nursing jobs are plentiful and there are much easier ways to make $$$ in nursing than in hospice work. But, learning to die can be daunting. Yes "...praying for a spiritual life, but hoping it won't be too spiritual..." states the ambivalence so well.

I am amazed and startled by new nurses planning a career in Hospice! I had to season through many years of nursing before I felt ready to come to this work. Perhaps more mature people are entering the field. Coming to Hospice is a choice to feel on a deeper level, I believe. Making the choice however, does not get you through the growing pains. I know that every phase in a nurse's career, she believes she is there because she cares about relieving suffering. Entering hospice, nurses have accepted the greater challenge of being present through suffering. Intuitively they know this work is more meaningful for them than work that is focused on healing sick bodies and saving someone from the brink of death . But the skillset is still western medical model- for most, with personal loss experiences or a little religeous background thrown in. Symptom management through medications is the comfortable way to start, until we have learned to die through experiences.
As a new nurse, I recall feeling the dire need for experience in applying my new knowledge. Then, with experience under my belt, I was free to step back, evaluate and choose where I wanted to work next (what part of my self I wanted to develop next). ICU was a valuable learning. Mant nurses express that they never felt more respected, appreciated, needed than when they worked a critical care setting. Pulling people back from death's door!...Perhaps this experience is why former Critical Care Nurses can become such good Hospice nurses---working so closely with people on the edge of life and death surely wakens us to the greater picture!

[req_read]

finn…

By “forums” I meant this one, but also teleconferencing, instant messaging etc. I have a Mac that can do audio-visual instant messaging, although it is somewhat proprietary. I see that the Yahoo IM can now do audio-visual too. The camera is not very flattering though… sort of a close-up, fish-eye view that makes a person look pretty goofy.

“I never was good lookin’ but now
I’m too old to let that get me down.”
Chris Smithers- singer/songwriter

All of what you say about the advantages of conferencing in person are true. But then you know the CEO’s will evaluate the benefits in dollars & cents… whether spending money on a conference will increase their nurse’s efficiency and therefore boost the bottom line… or if it will just make their nurse’s feel better about themselves (who cares?) Especially in our current economic climate… or should I say “melt-down.”

I am afraid that the same applies for hospice nurses as for the general public… if you are interested in self-improvement the operative word is “self”… do it your self. And if you are interested in learning about the meaning of “life” and “death,” have at it… have a ball… but don’t bug me (the CEO) about it.

Which gets back to that responsibility thing…

Which gets back to learning about “life” and “death.” This point cannot be over-emphasized, so pardon the redundancy.

It would be difficult to the point of unlikely to make good decisions about something you had never given any thought to… yet that is where we find ourselves regarding “life” and “death.” The general public’s default consensus definitions of those terms are infantile at best, so why would anyone expect pt/fams to make intelligent decisions when they suddenly find themselves in ICU for example? And what might we reasonably expect to result if healthcare were to become free?

Answer – rationing.

Which brings this somewhat lengthy thread full-circle. In a milieu of too many patients and not enough caregivers or healthcare dollars to go around, what constitutes “good” care?

Answer – rationing. A minimalist approach.

“Okay pal, here’s the morphine and chux. Lotsa luck! See ya next week. Bye.”

“Who was that masked nurse Honey?”

That does not really constitute “good” care, or “good death,” but it is looking more and more like that will be “good enough.” It meets minimal standards… not to mention, it is all we can afford.

But if you want to learn something useful… something that will actually make your dying process easier… you will have to do that on your own.

Which involves work. You can’t just adopt someone else’s doctrine or dogma and put it on like a raincoat… or some sort of spiritual condom.

“Okay, now I am protected.”

Not really… to learn anything truly effective about “life” and “death” one must get down in the ditch and dig… work at it… think about it… spend time evaluating outcomes… see what works in the real world and what does not. You cannot adopt someone else’s ideas, you can only use them as a springboard. You cannot purchase a pre-designed plan (join this or that religious group) and expect it to do any good without putting a lot of CRITICAL work into it on your own.

That is one of the great dangers with organized religions… they encourage people to be lazy... they tell people, “We already have all the answers, so don’t worry about it.”

Which is pretty much the exact opposite of what they should be doing. A spiritual journey is literally a voyage into the unknown, so declaring that you already know the unknown is… well… pretty telling as to one’s level of insight… or not. It is a form of self-delusion really… and arriving at death’s door in a self-deluded state does not a “good death” make… although providing sufficient meds, chux etc. to minimize the physical discomfort is, I suppose, “good enough”

Michael

[earle58]

generally speaking, i think people/nurses are overly reliant on dogma,
mainly because they distrust their own experiences.
we're pretty hard-pressed to encourage any spiritual components when scientific or religious principles have always held more credibility.

for now, i believe our society will continue to take solace in arms stretched out, vs soul reaching in.

leslie

[finn11707]

Eee-gad!

The reality of where we are at in healthcare is sobering, though I had a good belly laugh from your 'approach of the future hospice nurse...

"Okay pal, here’s the morphine and chux. Lotsa luck! See ya next week. Bye.”

“Who was that masked nurse Honey?”

Personally, I liked the 'Soilent Green' concept. That and some loving arms at the end...

The Hospice team I work with is currently struggling with a mandated 25% increase in caseload/visit expectations under a new management who seem hard line when a patient crisis ensues and staff report need for increased services. Hospice patient suicides are up with management defense "we can't stop them if that is what they coose to do..." If this continues, Hospice nurses will be hardening their hearts to cope with the work.

True, we cannot magically make a good ending when a life has been haphazardly spent. Still, this economic crisis must translate into a careful evaluation of the support systems we offer ---More Morphine and chux, with masks for the team...and call us the 'end of life squad'--or Hospice. I have long been advocating for a required patient and caregiver 'class' in which hospice info, philosophy and patient and family responsibilities can be reviewed---prior to coming into hospice. Then patients and families could consider if they want hospice or not---Perhaps the class could be offered as people begin failing treatments--to supplement whatever info the MD has actually discussed with them. Not that they get the choice as to whether they will die or not, but they certainly could have more choices right from the beginning.

Many patients who arrive at our hospice door are angry that the system has "given up" on them, and stay angry the whole way through. Some patient state "I don't want to talk about dying..."..or "..don't tell my family you are from Hospice". I believe that putting these patients into hospice is perhaps the wrong choice. 'Hospice saves you money because it pays for DME and medications' is often the offered MD enticement when patients and families are ambivalent. Our organization has recently implemented an inhospital Palliative Care program. An attempt to work with patients and families sooner might ease transition into end of life Hospice care--or rule it out for some.
I note that research studies on inhospital palliative care programs often focus on efforts to decrease hospital/treatment costs through through palliative care. Of course this is important when health care systems are in financial crisis. Perhaps grant writing and volunteer training is the thing of the future for hospice to continue its vow to ease patient pain and suffering in end of life by being present with patients and families, guiding as they journey and transition to a meaningful ending.
One hospice I worked with several years ago had grant monies in place which translated to free delivery of all medications for hospice patients, supplemental inhome caregiver hours for those who had inadequate caregiver support, and housekeeping/cooking hours. Patients and families had a mandatory pre screening hospice visit with a MSW, RN and chaplain. If patient or family were not sure they were ready for hospice or had no arranged caregiver plan, we checked back at a later time. This was a well planned and implemented hospice, for sure. Perhaps more pre (hospice) planning and pre bereavement outreach could enhance our work as $$$s dwindle. Our agency uses free therapist hours with MSW/Psychology interns for bereavement services.

What about books on 'planning for a good death'...are there any such books which focus on life relationships and what it takes to have a good death?

I would like to know how other hospice agencies are stretching their budgets further as things get tougher financially for medical orgainzations.

[req_read]

Hello again old friend, it is so very good to hear from you. I shall meditate upon your words…

This is all rather more poignant for me personally at the moment, as my own father is dying as we speak. He is not having a “good death,” (except perhaps from the perspective of the author whose article initiated this thread) and for many of the reasons I have spoken of heretofore. He is “comfortable”… yes… physically. But that is the best anyone could say.

The dying teach us how to live, but not always in a positive way… very often they teach us by showing us how NOT to live. The great shame is in how little attention we pay. They are literally dying to show us how to live… or how not to live… and we hardly slow down long enough to take notice. Such a waste!

finn… your suggestions and ideas are inspired.

Pardon my weeping.

Michael

[earle58]

Originally Posted by req_read

The dying teach us how to live, but not always in a positive way… very often they teach us by showing us how NOT to live. The great shame is in how little attention we pay. They are literally dying to show us how to live… or how not to live… and we hardly slow down long enough to take notice. Such a waste!

Michael

oh michael, you are so wrong.
those of us who are privileged to share the end of earth's journey...
we know what the dying have taught us.
is it something we can put into words?
no.
but it is their experiences that permeate our cores and enable us to wonder, to question, to be.

i truly feel dad's journey will be just fine.
it's all a part of our growing pains, and much of 'this' is necessary.
eventually, it's all good.
that, i believe to my dying day (should that ever come )

many hugs to you, sweetie.

leslie

[finn11707]

Michael-

My heart is with you. It does hurt deeper when it is your own loved one, for sure. It is a hospice nurses biggest learning perhaps...and (hospice) work feels different after a loss of our own.
Time mends our hearts. We understand and love and reach out differently. It is part of our journey, and why we need each other along the way. Your dad is lucky to have you with him now, Michael.

Last night as I was sleeping,
I dreamt-marvellous error-
that a spring was breaking
out in my heart.
I said: Along which secret acqueduct,
Oh water, are you coming to me,
water of a new life
that I have never drunk?

Last night as I was sleeping,
I dreamt-marvelous error!-
that I had a beehive
here inside my heart.
And the golden bees
were making white combs
and sweet honey
from my old failures.

Last night, as I was sleeping,
I dreamt-marvellous error-
that a fiery sun was giving
light inside my heart,
It was fiery because I felt
warmth as from a hearth,
and sun because it gave light
and brought tears to my eyes.

By Antonio Machado

[req_read]

We never really liked each other, my father and I. My mother had TB as a young woman and nearly died. Her pregnancy with me was accidental and considered to be life threatening to her. She came through it okay, but my father considered me a threat before I was even born… which set the tone of our relationship henceforth. I never fit in and left almost as soon as I was of legal age and seldom have returned. My brother and sister still reside on the family farm, but I feel more comfortable away. My mother died suddenly… in O.R… some years ago.

Several years ago, as my father began entering his dotage, I warned my brother and sister how he would die… which unfortunately has come to pass. My work has taught me that certain life-styles yield certain dying styles… so the handwriting with regards to my father has been on the wall for a long time.

My father was a hard worker (workaholic) who was accustomed to getting his way through sheer force of will… by bullying everyone around him… very self-centered and self-deluded… he would not recognize himself if formally introduced. If dying has to do with discovering who we are, my father had gotten almost none of his work done prior to his dying process… which portended a long, drawn out, confused, unpleasant dying process that would be difficult to watch. I advised my siblings to be prepared and now it is unfolding as expected.

We cannot “fix” or control anyone… but we do have “dominion” over our self. We cannot make anyone else happy… but we can work on our self… which sends out a circular ring of waves that splash onto those around us. If we work on our self in positive ways, then the ring of waves emanating from us are positive… and affect those around us positively.
And the reverse is true as well… if we do not work on our self we emanate negative waves… which also get on everyone around us.

And that is one of the reasons I have chosen to stay about two thousand miles away.

Yes… the “system”… the “universe”… is flawless. It teaches us what we need to learn. In my father’s case I could see the lesson coming… and from my work, I knew what it would look like… so stayed 2,000 miles out of the way.

But as you have heard me say many times, we are connected in ways that are not immediately apparent in the physical realm… he is, after all, my father. As it turns out, the physical realm is but an illusion… the pain has no physical limitation.

So we wait… while dying process formally introduces my father to his real self… the self he spent his life working so hard to ignore and deny.

We cannot escape our self. Our job… the purpose of life… is to discover our self. Some are not aware of this at all. Indeed, our society values wealth and status far more… and many consider “learning who we are” to be just some sort of airy-fairy, new-age, cockamamie double-talk. But it isn’t. Discovering who we are is our primary job. We have a vocation… a way of making a living so-to-speak… but all of that is merely a means to a greater end. And that greater end is discovering who we really are… and if we don’t put some time into working on that job beforehand, dying process will literally force the issue upon us and we are caught playing catch-up.

Those who do work on learning who they are have an entirely different kind of dying experience. First, they have a lot of their work already done. Second, they are accustomed to looking honestly at their self anyway, so when dying process forces the issue it is nothing new. They tend to whistle right through. And the weird thing is, the circular waves emanating from them are happy… wondrous. It sometimes seems downright weird to be around a dying person who emanates happiness, awe and wonder.

But that is not my father’s way. He is emanating confusion, suffering and emotional pain.

Either way, “life” and “death” are flawless. They teach us what we need to learn… whether we want to learn it or not. If one supposes death ends life, then our life will cease regardless of our wishes. If one supposes death teaches us who we are, then life and death teach us valuable lessons… whether we want to learn them… or not.

Technically, you could say it all turns out good either way. But there is a question of style… of panache. When people gather round to watch me die I would prefer splashing a sense of awe and wonder all over them. I am trying to take a different path than my father’s… God bless him.

I am the only gift I have to give. I prefer it be more awe than confusion, more happiness than pain. I readily confess having fallen short many times, but I am giving it my best shot… and it does help to understand the nature of the game.

I think that was my father’s greatest difficulty… I do not think he is malevolent at all, I just think he never understood the rules of the game. So I guess you could say I am trying to rectify that… by doing what I do… by spelling out the rules of the game.

I am the only gift I have to give… that is the guiding rule of this game.

Michael