Managing symptoms for a �good death�

[NRSKarenRN]

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

What's a good death? Most patients facing the end of life say it means freedom from pain and other distressing symptoms. 1 as nurses, we can play a major role in easing their way to a good death.

Managing symptoms in the last phase of life is especially challenging because you probably won't have the benefit of diagnostic studies to help you assess signs and symptoms. But as a nurse, you bring unique qualities to the table: assessment skills, a partnership with the patient and her family, and the determination to bring comfort.

In this article, I'll present a case study to illustrate the most common end-of-life symptoms, including pain, fatigue, dyspnea, and gastrointestinal problems. Whether your patient has all of these symptoms or only a few, you'll learn how to keep her as comfortable as possible.

[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

[leslie :-D]

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

[leslie :-D]

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

[finn11707]

yes michael! that is exactly what i love so much about you! you are already splashing alot of awe and wonder around here! we might have known you were hewn from trials of fire. i wept for you as i read your story, then read some of my favorite poems to regroup and went for a long ride in the beautiful fall countryside with my daughter, who i never see enough of. your legacy stirred something unfinished in me....and i feel the gift of knowing you these few weeks.

(funny, to think that i might owe even your father a little thanks for motivating you to become the incredible, knowing person you are michael.)

i am not i

i am not i

i am this one

walking beside me whom i do not see,

whom at times i manage to visit,

and whom at other times i forget;

the one who remains silent when i talk,

the one who forgives, sweet, when i hate,

the one who takes a walk where i am not,

the one who will remain standing when i die.

by juan ramon jimenez

warmly-jodi

[req_read]

Yes, it is often the difficult aspects to our lives that teach us the most… which I suppose is what Leslie was referring to. I have often said that if I could magically take away my blindness I am not sure I would do it. My blindness has taught me much, although it is a definite pain in the bum.

Despite my being away for most of my adult life and not speaking to my family for long periods my brother and I have discovered very similar passions. His vocation is construction, but his passion is working as a counselor for abusive men. When a man goes to court/jail for abusing his spouse and the judge orders him to attend a group for counseling, that is where he meets my brother.

We compare notes about these things periodically, and yesterday we were on the phone for 2 or 3 hours. Our father is still lingering by the way, although my brother tells me he senses our father is now more relaxed (he is not conscious and has not eaten or drank anything for several days.) But in our conversation yesterday we realized we both work with people who have forcibly had their social mask removed… his clients by the courts, mine by dying process. We both enjoy working with real people… the ones behind the mask… and have little interest in or even tolerance for superficial, social chit-chat (the precise opposite of our father.) And both my brother and I are driven to understand and define the meaning of life… the nature and rules of the game. Interestingly we have discovered we have reached very similar conclusions about life & death, albeit from quite different paths. We both have an aversion to organized religion but are drawn to and feel most comfortable with Native American spirituality (as far as we know, we have no Indian blood… as far as we know… but we are ninth generation Americans, which leaves a lot of space for hanky-panky.)

My brother & I had a blue collar childhood. Child labor laws were enacted long ago, but farm children were exempted. Lots of farm kids have worked as much by the time they graduate from high school as most people do by their early to mid 30’s. So we are a little rough around the edges… sort of tough. You may have noticed… I am not the typical sweet nurse. We are compassionate, but it is a point-blank, in your face, sort of hard-edged compassion (some would say “mean”… but I don’t think it is… I hope not.)

My brother’s description of when the nursing home (where my father is) called a meeting to discuss hospice was kind of funny. Some guy was tippy-toeing round and round the subject, obviously afraid to come out and say it. Finally my brother had to say it for him, “NO! We don’t want anything done to keep him alive. And yes, we want hospice. And stop trying to feed him!”

Life and death are both about learning who we are… and now I think you know a little more about who I am.

Michael

[finn11707]

ok-

I will come clean about a couple of things.

I have been off work for almost 2 months with what we know now is a stress related physical ailment...all starting from difficulty accepting the shortfalls of an imperfect hospice system which supports (?) the work we do. I recently had a patient who shot himself. From the first day of admission, he gave many distress signals. I raised my concerns loud and clear with the individuals who admitted the case, with management and with those assigned to support him. I went to our management team and presented to the weekly team review. I was basically shushed---told to lower my expectations, "...we serve a different population..." I was told that I need to accept that this was OK and do the best I could. The patient had been admitted to our service living alone, but could not read or manage his self care safely. He had frequent crisis of symptoms. He also had a history of ETOH abuse and was swigging morphine solution to ease the pain and drown his sorrows. When he killed himself, the review team brushed it under the carpet...and no one offered the apology I needed to heal. "When someone decides he is going to kill himself, there is usually nothing we can do to stop him..." they said.

Now, I wonder: Is it ethical for me to continue to care for patients at their end of life journey, working for this agency that does not care to listen? How can I be effective? How can I help ease pain and suffering and fulfill my committment to my patients-- to journey with them as they transition toward a best possible ending?

[leslie :-D]

but finn...

you see?

what we consider the "best possible ending" is so uniquely varied from pt to pt.

maybe, MAYBE suicide was the best possible ending for this fragile man.

when someone is handed a terminal dx, why is it so difficult to understand those who wish to end life on their terms?

there will always be pts who choose to self medicate to a level of oblivion...

because it is all just too much.

there will always be those who need to dictate the terms of their exit.

and we really need to respect that.

i'm really sorry finn, but only you can heal from within.

it doesn't matter if your employer acknowledges liability.

it doesn't take away the means and the end.

had your employer provided crisis intervention, i am quite sure this pt would have still chosen his way out.

i've seen it too many times.

i 'know' that poor soul is on a journey now, that will provide him insight, acceptance, inspiration, growth and a whole lot of love.

w/o my spiritual beliefs, i just could not do hospice work.

you truly had no control over the way your pt chose to die.

and you need to forgive yourself.

wishing you much peace.

it is hard, hard work that we do.

leslie