Managing symptoms for a "good death" - page 21
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
Sep 29, '08yes 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
Sep 30, '08Yes, 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.
Sep 30, '08ok-
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?
Sep 30, '08but finn...
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.
Sep 30, '08thanks leslie, i'll give your thoughts consideration. though i feel i've forgiven myself, i know i am still feeling quite a lot of stress about the lack of support and committment from my management team- to both me and to this patient and others like him. these cases are difficult and take a toll on us --especially if we don't work as a team to best do what we can. several of the nurses came to me after the debrief with their personal statements of support and comments noting management's repeated refusal to listen and support around this very unsafe patient situation. as his casemanager, i know this one could have been done better.
i think this patient is happy it is over. he was very alone and very frightened as to what he might be facing as his disease progressed. i also believe in patient's right's to end their life if they deem this their best ending. but we must be clear in developing a plan as to how hospice teams will support them (and one another) through this ending--especially when there is not a right to die ruling in the state.
yes, it is hard work, but well worth the effort and the journey with many is a gift in many respects. i don't think i will ever give it up...just strive and insist that it be prefected...more respectful and awe filled. but then, i'm still learning.
...i did not know what to say, my mouth had no way with names
my eyes were blind,and something started in my soul,
fever or forgotten wings, and i made my own way,
deciphering that fire, and i wrote the first faint line, faint, without substance, pure nonsense, pure wisdom of someone who knows nothing, and suddenly i saw the heavens unfastened and open, planets, palpitating plantations, shadow perforated, riddled with arrows, fire and flowers, the winding night, the universe. and i, infinitesimal being, drunk with the great starry void, likeness, image of mystery, felt myself a pure part of the abyss, i wheeled with the stars, my heart broke loose on the wind.
by pablo neruda
Oct 2, '08Philosophically, there is often a fine line between discerning the difference between intervention and letting things run their own course.
When we see someone struggling with an issue that we have acquired some insight into, whether through our own experience and/or observation of others, then we ought to pass on what we have learned in the hope of rendering someone else’s journey less difficult. Often times, those who could benefit from our knowledge and training do not, for diverse reasons. When our efforts fail, we need to let that go. However, not trying… choosing to not offer the benefit of our knowledge & training… because we suspect they might choose to ignore it is getting into risky territory. And not offering help because we do not want to be bothered, or because it might be too costly for the agency, is getting into pretty shaky ethical territory. Then rationalizing it all based on the supposition that the way it played out was what the pt really wanted anyway… that it will all come out in the wash, so what the heck, don’t worry about it… oy!
If you give it your best shot and miss, that’s one thing. If you don’t even try, that is a horse of a different color.
Unfortunately, lots of hospices out there don’t even try. Instead they provide absolute minimum services while at the same time have made a virtual science of producing the precise documentation necessary to gain maximum reimbursement. I hear about hospice agencies like this (on this forum) all the time and have experienced it first hand with my wife’s Aunt.
I am happy to report that the hospice nurse that attended to my father did a good job (an LPN.) First, she got the nursing home staff into line and then she effectively addressed my father’s symptoms. She was supportive and helpful to my brother and sister by providing them with good explanations of what she was doing and why. It was job well done.
And yes, my father finally did cross over. He did so in his way; i.e. lingered beyond what anyone would have thought physiologically possible with virtually no apparent understanding or conscious awareness of what was going on or why. Perhaps on some level he did gain some awareness, but if he did, it was accomplished after he was unable to express it. Perhaps now that he is no longer tethered to a physical body he is more aware… we can only speculate.
In general I would think it risky business to suppose that death will somehow magically change the trajectory of one’s life… that somehow, “life” and “death” are qualitatively different. I think it far more prudent to suppose that the course one sets in life will, in all likelihood, continue after death.
By way of example…
There are those who expect that by creating as much pain and misery as possible in life (by blowing themselves up in crowded malls and killing as many people as possible) will somehow fetch them great happiness after death.
In life, misery tends to beget misery. In life, happiness tends to beget happiness. Why should we assume this basic principle of life takes a 180 degree turn after death? Assuming that causing great misery will somehow yield great happiness by the simple expedient of becoming dead is, I think, misguided.
My father lived his life with a very low level of self-awareness. He passed through his dying process with a very low level of self-awareness. This caused him much confusion, angst and isolation. Now, by virtue of his becoming dead, you would be hard-pressed to convince me that he has become… presto-chango… happy and self-aware. Life does not work like that. I am not prepared to think that death works like that either.
But let’s all hope and pray that I am wrong… that we will not reap what we sow.
Oct 2, '08P.S.
But if we are so fortunate as to avoid the reaping, one must then wonder... so what was the point of the sowing?
Oct 2, '08michael, i never said the afterlife is a glory-filled journey of happily ever after.
i did say that it provides us insight...
addressing the hows, whys, whats.
i also believe it shows us how our actions (knowingly and unknowingly) affected others.
a wide learning curve awaits us, no escaping it.
no, i don't believe that.
i do believe these teachings we have yet to see, are so profound that it strips us of any remaining righteousness...
literally, we are new again.
afterlife isn't so much pink skies, fluffy clouds, celestial music...
but the land of opportunity, truth and love.
for me, that is heaven.
Oct 2, '08That's the thing about heaven, afterlife beliefs, religious beliefs---we carry these in our hearts--all, decifired by our hearts, intrepreted by our hearts. It affects who we are and how we see and feel--and how we do our work. What is in our hearts is often a big part of the draw to hospice work. The hardest part is stepping back to allow full acknowlegement and respect for someone else's (perhaps odd) beliefs and yet, hold fast to beliefs that keep us strong and able to go forward in this work.
I came from a large family with 5 children, spaced about a year apart each, and 3 cousins who lived with us intermittently. We lost a sister in our teens. Mom and dad decided to 'fill/heal our gap' by opening our home to abused foster children. We had 4-5 children, ranging newborn to 5 yr old, at a time for many years. We all journeyed this time together but came out with very different perspectives on the journey...the impact of the 'fix' of foster children in our home during the years following Susan's death; even the way we grieved as a family drew some of us together and drove a wedge in for others. One brother, an incredible gymnist and athelete, majoring in PE changed his major to religion. The other, a gifted rock musician, changed to religious rock and lead the movement into highschools all over California. Dad receeded further into religion--almost unable to carry on conversations without adding comments about God. My sister and I both left organized religion behind and became nurses. She has worked ER and ICU her entire 30+ year career. Perhaps, struggling to avoid finding meaning about life through death.
I have shared my love of poetry in some of my posts...I recently sent one with a 'healing', loving message to my sister. She wrote back that she is finally gaining some insight about why she struggled so with dad's death; was estranged from and angry with our family for so many years, etc. But the poetry did not speak to her heart as it does mine--she wrote, 'thanks for the poems, but I really don't understand them...'
I still believe that love and non judgemental presence are truely the only universally understood Hospice languages, and the key to relieving suffering. Heck, even outside Hospice in the real, still defended, place we call 'living', it works pretty well. Now if I can just shut up.
Oct 3, '08Leslie… I didn’t think you viewed after death experience as bliss, but a couple of your remarks had me confused. No matter.
I view most religious depictions of hell as rather macabre marketing tools… getting people to show up and put money in the pot by using tried and true methods of fear mongering. Humans are perfectly capable… even adept… at creating their own personal “hell” by employing ineffective or counter-productive coping strategies.
Finn… first, don’t shut up.
Second, your family sounds like it would be a fascinating subject for a student of family systems. I wonder what you think about the notion that excessive focusing on religion… or “religiosity” if you will… is a form of addiction?
My brother’s and my world-views turned out, over time, to be remarkably similar… albeit arrived at via different fields of study. My sister however, is very different. Her role in the family was very different. She is a fundamentalist Christian… very different from us boys. Her role in the family was, “Little Sweet” (to my father.) She could do no wrong… nor was she required to work. She was born special… privileged. My brother & I worked… while she played. Whatever she did was wonderful. Nothing we did measured up.
In the long run however, my sister suffers more from her upbringing than my brother and I. She was always told she was special… but deep down she knew she was not… so she tries to hide who she really is… very cryptic about her true self. Her religious views replicate her upbringing. She clings to the view that she is special… will receive special treatment and consideration from her Father… just as she did from her father… yet deep down inside she lives in fear that somehow, someday, someone will discover that she is just a human being like everyone else and really not special after all. So she keeps an armor-plated social mask up at all times, terrified that someone might peak behind.
It seems ironic when people who have experienced great difficulty sometimes demonstrate more personal growth than people who have had it relatively easy. I had to work very hard as a child, so with my own son I did it differently. I let him have a fun and playful childhood. Now he does not know how to work, and as a consequence, is having a harder time than if I had made him tote that barge and lift that bail. The trouble with parenting is that by the time you figure out where you went wrong, it’s too late.
As we grow older and realize what screw-ups we have been there is a natural inclination to be far more accepting of others… to be more empathetic and compassionate. It is hard to criticize someone else when you know you were probably just as bad if not worse. A big part of the trick, in the end, is to be able to forgive and love your self… despite knowing who you really are.
Then again, you could work at avoiding becoming acquainted with your self at all… to deny it outright… that’s my story and I’m stickin’ to it… then attempt to go “whistling by the graveyard,” as the saying goes.
So great pain can cause great growth, while a life of ease can lead to great pain. Go figure! The solution seems to lie in the ability to elect to grow even when you don’t have to… to choose the difficult path of becoming more self-aware… consciously… by choice… without being forced into it.
But in a sense, even that is “being forced into it”… when you eventually discover that if you don’t choose the harder path, the consequences are likely to be worse.
Then, on top of all that, we discover we are immortal… which means this whole deal goes on and on and on… Dang! “End of life,” seems easier.
As it turns out, the only thing harder than being mortal is being immortal. Deep down we prefer a beginning, a middle and an end. But eternity? Yee Gads!
Oct 4, '08Dear Req_read
My condolences on the death of your father, thank you
for sharing your intimate thoughts and feelings, your self
awareness is extraordinary
I'm sorry for your stress with the lack of support from your
team, I applaud you in your strive for perfection and your
commitment to your patients, please do not lower your
expectations, but please forgive and continue the hard work
and Leslie, Thank you for your remarkable insightfulness and
your tremendous knowledge and wisdom, you have truly been a guide
Oct 4, '08Yes, ALLOW MYSTERY, you are so right--it is much about forgiving and moving on. Not just for those we attend in their final weeks, but ourselves also. Those of us drawn to this work knew, even in the beginning, there is a great learning for us in doing this work. It is beautiful work, but hard work to do if you don't allow for acknowledging and addressing your own issues as they arise, then work to grow and mature with it.
I now see that forgiving a management team who is not always making the best decisions or offering the best support to its team is much like forgiving your family as you grow and begin to recognize their limitations and failings.
I have certainly found wisdom and developed self insights these past few weeks as I have read this meaningful thread since its inception in 2006.
Thanks to all of you who posted, especially to you Michael as the perspectives and wisdom you shared have resonated in me. (And, yes, we probably would make for a great family systems study!)
Oct 5, '08i want to share another conscious death experience. j-- was a scholarly man who came from a well educated family. he was dying from advanced liver disease. his questions were few, but his wife had many and listened carefully to all our answers---dismissing some staff as 'not seasoned enough to offer us anything...' she directed our help and supported her husband lovingly and dotingly. (she later admitted she was a retired public health nurse) j-- moved gently through life review, visits with dear friends and family, even made outings to favorite restuarants the day after he asked me to tell him what the end hours might look like, he slipped into a dream like state where he remained for several days. he talked, laughed, made motions of running (he had been a marathon runner in younger days) and eating intermittently throughout these days, still interacting with his wife from his far away place. his end neared, he became quieter, he stopped eating food. one evening, a dear 'adopted niece' came bringing his lovingly prepared favorite meal--lobster thermador with champaigne. he had not eated now for 3 days, but his wife asked him if he wanted to wake up for this special meal and he said yes! that evening, they ate together with candle light and his loved classical music playing softly. he ate with relish, eyes still closed much of the time. he died several hours later that night.
mary oliver's poem when death comes tapped into j---'s wondering and knowledge-seeking spirit. i have seen several patients slip almost same day into thier final hours after reading this poem. he needed very little medication for transition periods that often require more with his diagnosis.
these are the experiences which we reflect back on after dealing with more troubled dying experiences in our patients.
i had a young woman--(younger than myself) who entered hospice care full of angst. she was surrounded by a loving husband and 2 daughters who knew her well and chose to support her wishes fully. she stroked a couple of weeks after admission to hospice and became fully dependent and furious--something which fully broke her spirit. she could barely speak, but loudly made her wishes known to me and to her family "...get me out of here..." we discussed options of supportive care, chaplain, medications for pain and sedation in varying levels for her high anxiety. none of the lower level meds touched her and she shouted "give it to me now..." when we discussed phenobarbital. it took time for the team to meet, discuss and clarify to family and patient what it means to follow this wish. everything in place, she died 5 days later with family gathered around and at peace in knowing they had fully respected her final wish.
"for the raindrop, joy is entering the river--
unbearable pain becomes its own cure.
travel far enough into sorrow, tears turn into sighing;
in this way we learn how water can die into air.
when, after heavy rain, the stormclouds disperse,
is it not that they've wept themselves clear to the end?
if you want to know the miracle, how wind can polish a mirror,
look: the shining glass grows green in spring.
it's the rose's unfolding, ghalib, that creats the desire to see--
in every color and circumstance, may the eyes be open
for what comes.
(ghalib translated by jane hirschfield)