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.
Last week a client of mine sent me an email. She said her father was dying and one of his remarks was: “Why do Raymond and I have to share the same bed?”
You see… Raymond was one of the dying man’s 10 children. He died 4 years ago.
Specializes in ICU,HOME HEALTH, HOSPICE, HEALTH ED.
My mom died when my daughter was 3 1/2. My daughter only knew grandma as a rather ill person, but she received lots of cuddles and "I love yous" each time we went for our turn helping to care for mom. When mom died, we had just returned from several weeks of caring for her. She seemed fine to me..but I hadn't worked hospice yet either. I had planned to go home, take care of some business, then return to spend more time without my daughter. My brother called to say mom had turned suddenly. He and his wife had been out shopping for half the day, unaware. Dad was at mom's bedside when they returned. One glance told them she was dying. Within an hour of their return home, mom was gone. They believed she waited for their return.
They called me just after mom crosses. I was getting my 3 1/2 yr old to bed. I knew how upset she would be-at bedtime and all' and I needed some time alone--so I chose to wait until morning to tell her grandma had died. Next morning I wakened. Then remembered, and lay in bed all sad and comtemplative--thinking about what I would miss most: her hugs; her calls with newsy news; her cards with notes sent for every imaginable occasion. Remembering long talks, comparisons of what it was like to be a nurse then (when she was) and my version of 'now'. I would miss her soft, assuring voice "Don't worry about it Honey...it will all work out..." was a phrase I had heard so often throughout my life. It still resonates in my head.
(More dying people poetry...heard by only a child)
My daughter's cheery voice called me to her room as she wakened next morning. "Mama, grandma came to visit me last night!" My heart skipped a beat. "You mean, you dreamed about grandma?" I had not been raised to believe in departure visitations) "No, I don't think so..." So tell me why grandma came to see you." "I don't know...she was in my doorway...all shiney...then she sat down on my bed and said she loved me...That's all."
Yes, the dying and the very young see more, clearer, further than the rest of us. We only get to see glimpses, through their eyes. But it is enough for us to know there IS more than what we see. When we are present with those who are "seeing", we feel it as something of inexplicable value.
Is that one subject, or two? I'll stop now, since I had a long day of work. But I am still mulling over your thoughts regarding chosen addiction.
What an absolutely wonderful story! Interesting… of all the things your mother could have said to your daughter she said the simplest, cut-right-to-the-point, most important thing.
Here’s another dying person’s poem. This too was emailed to me last week by a client. I did respond… emailed her back… but won’t include my reply… yet. First I would like to hear your thoughts (finn or anyone… we’re all hospice nurses here.)
“My father passed away Sept. 1 at the age of 85. He died at home with hospice care. The night before he died he began talking to me. It was surprising to me because he had not spoken to any of us children for a few days. He kept repeating to me that he "wanted out of this contract". I didn't understand what he meant so I questioned him. I asked him if he wanted to go back to the hospital and he said no. I asked him if he wanted life after death and he said yes. I then asked him if he wanted to go with Jesus. He said no and then said that I didn't understand what he meant. He told me he wanted to "come back as himself".
I'm wondering if you could give me some insight as to what he may have meant by this.”
Specializes in ICU,HOME HEALTH, HOSPICE, HEALTH ED.
"he kept repeating to me that he "wanted out of this contract". i didn't understand what he meant so i questioned him. i asked him if he wanted to go back to the hospital and he said no. i asked him if he wanted life after death and he said yes. i then asked him if he wanted to go with jesus. he said no and then said that i didn't understand what he meant. he told me he wanted to "come back as himself".
michael-
i think i would understand his words to mean this: in his 'quiet days', he journeyed deeply, looking at his life in review; glimpsing the next; seeing what he could not see before. finally, understanding that he would journey on, after crossing to the next life. he would be himself, but different--"come back as myself...under a new contract". in those few words, he tried to tell his daughter that he was ready. transitioning through the final stage before crossing; acutely aware that he was himself, but different, and would live on, though changed, after crossing.
wow! i love that kind of communication at the end! it is exciting being present to that kind of seeing and transformation. are there any books for families to intrepret dying patient's words? there should be. sort of a carl jung interpretive manual to the dreams of the dying.
i had a dear patient with a sweet reclusive wife. he had been a commercial fisherman for 20+ years, during which she had accompanied him on the boat! years before, when his family was still young, he had a dream in which he was out hunting. a man in the woods told him he would die soon. he told the man "no, it is not possible for me to die yet, i have a young wife and family i need to care for..." 2 weeks later, he was hunting and was accidentally shot in the side, puncturing his lung. the doctors told him he never should have gotten out of the woods and lived.
when he was transitioning, a man came to him one night while he slept and told him to get up "...it is time to go for a hike..." he followed the man outside. his wife wakened and found him on the front porch, clinging to a post. he was looking out over the river they lived on, unsure how to cross. his wife guided him back to bed and called the next day for me to visit. he told me to call his family to tell them it was time. i read him the poignant mary oliver poem "when death comes". he listened carefully to the words, then said "i need to get to my boat". his wife and i helped him to his bed. he slipped in and out dreams for 2 days, visiting with his sons and daughters, then slipped away peacefully.
finn… I think very little has been written on interpreting what the dying say. I have written some of course, but it is a wide open field for anyone who might be interested.
Your story about the fisherman is a very good example of conceptual cross-referencing… or speaking in allegories. That is key to interpreting what the dying have to say. It is very much like reading poetry.
Your interpretation of my client’s comment about coming back as himself is nearly the same as mine… with one variant. We cannot know for sure of course, since neither of us was there to talk with him in more depth, but I had assumed he was not sure if he would come back as himself… so I assumed he was asking a question. Your assumption was that he did know he would come back as himself and was therefore simply making a statement of fact, not asking a question. Anyway, the following was my response…
*******
Hm-m-m-m… that is an interesting comment… “come back as myself.”
Well I think that perhaps he was pondering one of the most basic existential questions there is; i.e. whether or not ‘I’ will continue to exist as ‘me’… versus being absorbed into a larger or consensus consciousness… thereby losing my sense of individuality.
It seems apparent, when examining the peculiarities of this physical realm, that it is designed to accentuate our awareness of being a unique individual… or what I call the process of individuation. Residing in the physical world causes us to individuate… often to a fault… to the point where we seem to forget that we are, in fact, all connected. One of the fears of the dying is that they will lose their sense of being ‘me.’
I think however, that the fear is groundless… that we do retain a sense of being ‘me,’ while at the same time gain a sense of being connected. We tend to think that those two levels of awareness are mutually exclusive; i.e. that ‘I’ can be me alone, or ‘I’ can be part of the whole, but not both. However, I think we actually can be aware of both simultaneously. So as I say, I think the fear, natural as it is, turns out to be groundless.
The Greeks spoke of two seemingly opposed urges, or inner drives; Eros- the will to live, and Pathos- the will to die. If you think of those two urges in terms of today’s consensus definitions of “life” and “death’ it seems rather confusing. However, if you think of Eros as- the will to be ‘me’ alone (the individual) versus Pathos- the will to “go home” (to be aware of my connection to universal consciousness) then the whole idea of Eros & Pathos makes a lot more sense.
Specializes in ICU,HOME HEALTH, HOSPICE, HEALTH ED.
[color=#3366ff]re:("he kept repeating to me that he "wanted out of this contract". i didn't understand what he meant so i questioned him. i asked him if he wanted to go back to the hospital and he said no. i asked him if he wanted life after death and he said yes. i then asked him if he wanted to go with jesus. he said no and then said that i didn't understand what he meant. he told me he wanted to "come back as himself")
yes, it would help to know more about his statements through being there to speak to him. i guess i have the tendency to err on the side of giving reassurance to families when interpreting their words. so, i would say that he glimpsed where he was going...had understood he would come back (go on) as himself. brief words after days of silence and reference to 'wanting out of this contract'... 'wanting to come back as myself' ...are easy to interpret in a comforting way. of course, it could be that he was bargaining with what he'd seen. or, was still trying to figure out how or if he might exist after dying. but that would not be a comforting intrepretation for his family. often, when i've worked with someone who glimpsed the other side during a long silent period, they speak a message of reassurance (i'm ready to go or i will be ok) or love and thanks to the one they speak to. could be he was still asking for permission to get out of the contract. his "no" to going home to jesus was pretty brave and forthright, so i guessed he was not bargaining or searching still--but knew.
"one of the fears of the dying is that they will lose their sense of being 'me.' is this earlier process? i guess i don't view it this way because it seems to me, as the dying come close to crossing, their fear is often dispelled or replaced with a focus on something beyond---a transition i always interpreted as understanding and acceptance of the transformational process of dying in which they grasp they are no longer their 'physical body'; and, accepting this, cross over with their new 'sense of self' intact.
i cared for a young south american man who had little time remaining. he stated clearly each visit "i know i am not going to die" but also wept in awareness that he was leaving his family. he was raised in a culture that embraces miracle healings and resurrections, but seemed to understand and accept that he would die and leave his family; yet also transition and live on. he stated his awareness in different words, but it sure sounded, to me, a lot like the awareness which might lie behind words like: 'wanting out of this contract' and 'wishing to come back as myself'.
Yes, I see your point about erring on the side of being reassuring. I would raise two points for your consideration however…
First, it is good to develop a positive relationship with not knowing… with mystery. Since we are constantly moving into the unknown it would be useful to nurture a sense of comfort with the unknown.
Second, thinking patterns do become solidified. They can be changed of course, but it may require a good deal of ‘acting as if’… deliberately acting contrary to our established thinking patterns in a conscious attempt to change them.
I think the point about identifying self as the unique individual – ‘I’… versus the collective consciousness is important to contemplate and discuss… so pardon me, but here I go again.
Because we were born and reared into this physical realm, within a physical body, we simply assume that having a sense of individual-ness is the normal, natural state. But is it?
We were born into a body and it never occurs to us we could be anything but an individual… or a body. But as is so often the case, we are surrounded by evidence to the contrary… if we would only pay attention. When we do pay attention then we have to wonder, “Is being an individual really our natural state? Or is it some sort of artificial construct?”
When your spouse is upset and you ‘sense’ it and ask, “What’s the matter?” and s/he says, “Nothing,” and you know perfectly good and well it isn’t “Nothing,” what is going on there?
Remember, we invented language so we can lie… but there is a connection that supersedes language. We have, all of us, extrasensory perception… perception not limited by the 5 senses. Some are more aware and use it more than others, but we all have it. We all sense, feel and intuit incoming data that is not filtered through any of our 5 (physical) senses… and we do it all the time. That is “extra-sensory.” But for the most part, we don’t think of it in that way. We were taught that our “real” perceptions are limited to just 5, so most of the time, that is what we think… despite the fact that we perceive and act upon incoming data not filtered through our 5 senses all the time.
When I was a kid we built a swimming pool on our farm. It wasn’t large, but it had a deep end where it was over my head (as a kid anyway.) I did not know how to swim when we built it, but of course we played in it quite a lot. One day my uncle was there and I was in the pool. He asked me if I could swim yet and I said, “No.” Then he said, “But you are swimming.” Then I noticed that he was right… I WAS swimming!
Many of our perceptions (feeling, sensing, intuiting) are shared with the people around us… perceptions that transcend the individual… that are not limited within the boundaries of an individual… but that are ‘known’ by two or more individuals without benefit of using any of our 5 senses. In other words, we ARE swimming… even while we think we can’t. We are taught extrasensory perceptions are not “real” and that most of us don’t have them… so that is what we think… all evidence to the contrary not withstanding.
Here is another example (and this one is a little more on the dark side.)
When a hospice pt experiences “terminal anxiety” we (the nurse) feel that anxiety too and don’t like it, so we want to fix it. Then we are in danger of falling into the trap of wanting to drug them until we feel better ourselves. So the lines of demarcation between ‘me’ and ‘you’ are… if you really stop to think about it… not all that clear.
One of the most basic concepts to grasp when studying family systems is that individual boundaries are NOT clear… or you could say that individuals are not as individual as we assume. One might even say that most people are, to one degree or another, “enmeshed” with at least one other person; i.e. their boundaries overlap… part of ‘me’ is actually ‘you’ and not just ‘me’ and ‘me alone.’ Which can lead to complications in grieving of course… when one with whom I am enmeshed dies, part of me dies too, literally… part of me is torn away… gone.
We think of ‘me’ as being a unique and separate individual. But we really are not. Someone (the Great Spirit) went to an awful lot of trouble to create this perception of being a separate individual… which is not an easy thing to accomplish. If you had a giant mass of consciousness, how would you create (out of that one mass) several billion perspectives of being separate individuals? Now that would be a real challenge!!!
We think we were born as individuals via biological processes that evolved in a linear fashion over a long period of time… in other words, just sort of by accident. Which is about as sensible as looking at Mt. Rushmore and thinking, “Gosh, isn’t that odd. All that stone accidentally looks like 4 presidents. What a strange coincidence.”
That’s nuts! There was intent involved. Who we are (and the universe we live in) are products of intent. Incidentally, it is not just me who thinks this… so do a lot of physicists.
Ego is an incredibly complex device designed to create an illusion… a perspective… of being ‘separate from’ all other consciousness… and it is anything but an easy trick to pull off! Ego gets a lot of bad press, and deservedly so, but really, it is an amazing device. Without it, I would not know where ‘I’ began or ended.
Someone went to a lot of trouble to achieve this sense of separation we all have. And since Someone did go to all that trouble, we can only assume there must have been a reason for it… a purpose… a goal in mind. In other words- intent.
And obviously, it was never intended that we should, or even could, stay immersed in this perspective of being ‘separate from’ forever. I mean, the mortality rate here is precisely 100%... which gives us a hint as to what was intended.
So here are the clues…
We are naturally part of universal consciousness but are in a place and circumstance that gives us an illusion of being separate… but that perspective lasts for only a very short period of time… and then we die.
Then what? Does that perspective of being a unique individual continue on?
If you consider how much trouble went into creating the perspective of being separate in the first place, it would seem strange indeed to just throw it away. It does seem, at least to me, that the Intent was that we should retain an awareness of being an individual. Why create something so incredibly intricate and complex just to trash it?
So the inevitable question arises… how can we have both? How can we hold 2, seemingly opposed, perspectives simultaneously? How can ‘I’ have a sense of being both ‘me’ and ‘us’ simultaneously? It seems too much!
But is it? When we pay attention we can see that we are doing that very thing right now… as we speak. Being in a physical body driven by ego forces us to have a sense of ‘I’, but neither can we deny having a sense of being connected… if we pay attention.
Wow! We really are complex aren’t we? Look Mom, I’m swimming!
When my uncle said, “But you ARE swimming,” that was the first time I thought of myself as a ‘swimmer.’ ‘Dog paddler’… maybe… but a ‘swimmer’ just the same. I expanded on it later.
“Oz never did give nothin’ to the tin man that he didn’t… didn’t already have.”
Also, we cannot give anything we do not have.
We are consciousness… awareness. What they gift to us is awareness… awareness of who they are… awareness of who we are. So if we want to give of ourselves… what we are… what we have to give… is awareness.
The dying often discover on their own that they are magical, spiritual beings… neither confined to nor limited by their body. When they stumble onto this realization they might say things like, “I am not going to die.”
The dying offer us what they have… and what they have is awareness. We can return that gift in kind and reinforce their awareness of who they are… we can reply, “Yes. You are correct.”
Yes… it is true… “Oz never did give nothin’ to the tin man that he didn’t… didn’t already have.” But we are awareness… and we can reinforce one another’s awareness… and maybe, just maybe… for the first time… think of ourselves as magical, spiritual beings. Dog paddlers maybe… but we can build on that.
Specializes in ICU,HOME HEALTH, HOSPICE, HEALTH ED.
Michael--
Thank you for expounding more on this concept. I also had some intuition that the "I am not going to die" statements of the dying are related to a growing awareness that we do not end with death. That we can trust that the process will bring with it a realization that we are more than just our bodies and there is more beyond the death of our body.
I admit, I sometimes struggle to remember this when I work with patients who use statements like "I am going to beat this" which is of course just a variation of "I am not going to die", but one which is still getting there but might call for more of our help in clarifying the transforming process of dying with assurance of something very real beyond.
To families and caregivers the statements can be quite overwhelming. They are not personally experiencing the transforming process the dying are and often have more difficulty with understanding these statements to mean more than just 'he/she doesn't want to die'. When caregivers are uncomfortable themselves with the whole dying process, they offer further "protectiveness" in translating to "he doesn't want to talk about dying"
Your point is well taken, Michael. The tug between collective consciousness vs the individual ego-centered state of "me" is clearly at the center of this work's process. And, you are so right about the importance of allowing mystery, encouraging comfort with, then embrace of the unknown. It seems, though that finding comfort with the unknown is the most difficult part, except when there is an existing framework for trusting that the unknown is something 'good'...like heaven, reincarnation, etc. Possibly also why so many hospice workers use their belief in God to supporting their patients and themselves. One day we all will know the challenge of trusting the unknown enough enter the collective consciousness that takes us across.
I have met many who are dying but insist they are " fiercely independent"..."control freak" etc. With this, seem to attempt separation from the community of hospice and dying. They may meticulously chart--pain levels, medication interventions, food intake, BMs, who visited... to avoid deeper conversations about the process of dying. Since hospice follows a medical model, it is easy for some to focus on these details which we are required to collect and chart each visit. No mystery in those conversations! It is sad that allotted visit time is often insufficient for the deeper work; that nurses are reminded by managers that the 'real purpose' of the nurse's visit is to focus on symptom management and caregiver instruction. How many of us have received comments of "have the MSW (or chaplain) visit to help with that; it isn't a nursing focus. Yes, well managed symptoms may result in better quality of life, but how can we honor the true nature of the work when nurses, who often only focus on managing symptoms and training caregivers visit 1-2 x weekly, while MSWs and Chaplains visit only 1 x per month? Nurses in Hospice must help with the journey.
Your story of your childhood experience of falling into the pool and thereby finding you could swim may apply to both nurses practicing hospice as well as to patients approaching their end. Both arrive unprepared by life experiences to face the dying process, but are hewn by the fire...learn to swim by by falling in...
my thoughts exactly! thanks for being a like minded person, out there some where; when i read your post i do not feel so "alone" in my views! THANKS finn
The original impetus behind this thread was the author of an article who purported to describe “good death”… and then she described symptom management. Symptom management is a good thing… true enough… but her article should have been titled, “Good Symptom Management,” not “Good Death.” I suspect that if one of her pts said, “I am not going to die,” her response would have been to add another drug (Haldol or Ativan maybe) send in the MSW or Chaplain or both… or more likely, just ignore it.
Many sense that there is something wondrous going on during dying process, but I daresay few could explain it… especially when hospice management actively discourages nurses from focusing on the wondrous aspects of dying process and demand they focus on the mundane. To steal another line from Oz… “Pay no attention to that man behind the curtain!!”
But hospice gets paid to manage symptoms, not to investigate the mysteries of being human. And as previously noted, we baby boomers will be lucky to get even basic symptom control. Our 401k’s are evaporating… and maybe instead of trying to convince Afghan farmers to grow something other than poppies we should be buying it all up… for when we need it.
Ultimately, only ‘I’ am responsible for ‘me.’ So if I am going to learn anything about my death, I will have to do that on my own. The hectic work-a-day world absorbs nearly all of the average person’s attention, and even if there is a little left over at the end of the day, someone (perhaps a hospice manager) is quick to warn against looking “behind that curtain.” (There’s no money in it.)
The prevailing attitude regarding discovering who we are, or learning about life and death is… surprise me. Which is why (finn) I asked you where you came from. You aren’t normal.
My brother and I have debated the statement; “Life isn’t fair.” He tells that to his clients (wife beaters) all the time. I suggest that life is fair in that it gives us what we need… as opposed to what we want. But I think maybe my brother is right after all.
We always have 2 choices. The harder one is to look honestly at our self. The easier one is to not look honestly at our self. But there is a caveat… or as my dad used to say, there’s a “yea-but.”
Yea but, while not looking honestly at one’s self is easier in the short run, the astute observer sees that doing so invariably leads to more misery in the long run.
So life isn’t fair. It means always having to choose the harder path… to avoid really getting clobbered BIG TIME somewhere down the road.
So by doing that (finn) you are in a clear statistical minority. In other words, you’re weird. A breath of fresh air… but weird. Sort of like one of those dying people who make you feel good.
Specializes in ICU,HOME HEALTH, HOSPICE, HEALTH ED.
Haha! Okay, yes I am weird...now that explains a lot.
Still- I am deeply grateful for the opportunity I am having to chat with someone like me (you are weird too, you know)
I came from no place particularly special. I have related some personal details in prior posts... Big family, 4th child of 5 (all spaced 1- 1.5 years apart in age). Sister died in high school. Matriarchal household with a loving, but deeply religious dad. I attended small, church affiliated schools through high school. Mom was a nurse; and a loving yet distracted parent. Dad was a plumbing contractor (but his college degree was math and religion-go figure) who had an abusive father. At 13, he converted to a fundamentalist religion with his mom, as she left the marriage. My family's home was licensed to care for abused foster children after my sister died; and we formally adopted a daughter after fostering her for 6 years. I married at the age of 21 (barely) to a man who was a clinical psychologist, older, idealistic, agnostic. We had 2 children, spaced 8 years apart and divorced when I was 38. I will spare you more details except, in my family of origin, were were weekly church goers; were not encouraged to think outside the box; were encouraged, by word and example, to be always kind, compassionate, giving and to value a lifelong search for 'true' understanding.
See, nothing clearly weird-inducing. I was impacted deeply by: my sister's death when I was 16; the fostering of young, abused children in our home; the sometimes too attentive guidance of my parents; emancipation through marriage to a 'worldly' but exacting and unkind 'non believer'; valuable learnings through people and experiences in my nursing career. As an adult, I find an attraction to people who have experiences and views which are dissimilar to my own and who also find meaning in searching out their own path in life.
"Don't look at the man behind the curtain..." leads me to the man behind the curtain. Being told to 'avert my eyes' only makes me fix my gaze. Aren't we all like that in Hospice? Isn't that what brought us to this work? The quest for understanding and seeing beyond. 'Life isn't fair' is quite western attitude, while 'we are given what we need' is quite eastern philosophy...and the answer is surely somewhere in between, including both.
Healing is not in the answer...it is in the journey to find the answers. (You can quote me)
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P.S. Here’s a little dying people’s poetry.
Last week a client of mine sent me an email. She said her father was dying and one of his remarks was: “Why do Raymond and I have to share the same bed?”
You see… Raymond was one of the dying man’s 10 children. He died 4 years ago.
Michael