Managing symptoms for a �good death� - page 19

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

  1. by   finn11707
    I wish this was still an active thread as I have read the entire 24 pages today...feeling somewhat at a low point in my Hospice career over the past couple months.- Believing my employer's organizational goals, expectations for productivity instead of committment to giving adequate time to be present to this work, and notable difficulties in team process have depleted my passion for this work. BUT, this thread, and some of the posts by Michael and Leslie-also River have taken me on a reflective journey of rediscovery. (of my own forgotten or fatigue-dulled Hospice experiences, which, re-visited, inspire me! and fill me with awe once again! And of new insights and learnings found in your your posted perspectives. Thank you. I wish I'd been there at the start in '06 for the active sharing of stories. I do hope you are well Michael; and I am searching for your books. What an honor to have your voice in our midst. Any chance of returning to the thread??? I'll try. Here I go with your former request for stories of conscious deaths. The one I offer was a great gift to me as I was stressing at my agency admitting this gentle man to my care, tho while he and his family insisted on every effort to keep him living as long as possible--including dialysis several times per week. My visits were difficult to plan into his very busy schedule of taps for acites, dialysis and md appointments. All energies and time focused on running after symptom management, wound care, med management and caregiving. During perhaps my 5th visit, I was doing wound care while the brother scurried around preparing for a trip to the clinic for a tap. Suddenly,the patient raised up and asked "what is that?" I looked into his face and knew he was seeing 'heaven' (he and his family were devout catholic)>i though "uh-oh" knowing that this patient and family had not moved any closer to acceptance of a DNR or death in the few days I had known them. I called the brother to the bedside and the patient again asked "what it it?" I told him that heaven's door was ajar and offering him rest there if he chose. His brother cried out "No, don't go..." After several seconds of contemplation, in trance, the gentle man told his brother he was ready and wanted to go. He assured him he would be okay and thanked him for coming back into his life to care for him during the past year. During the next 30 minutes we waited with him as his body fully shut down. His brother cried quietly, talking to his dying brother; telling of his gratitude in rejoining with this brother after several years of estrangement, recounting childhood memories and expressing his love. Then he said goodbye as his brother took his final breaths.

    I was filled with awe, honored to be so close to this amazing goodbye. I had been so sure this case would be a struggle...They taught me a great lesson.

    Any other stories?
  2. by   req_read

    Thank you for that.

    Yes, I do have another story… this one is recent and involves family.

    My wife’s Aunt Kay (who resided in Florida and was in her 80’s) had hip replacement surgery. Like the old saying goes, the surgery was a great success but unfortunately the pt died… although it didn’t happen quite that fast.

    My wife (I shall call her Becky) and her Aunt had grown very close over the years. There was 2,000 miles between them but they spoke on the phone often and a lot of their conversations were about health issues. Aunt Kay had no immediate family left so a couple of years ago she made Becky her POA.

    After the hip replacement Aunt Kay’s kidneys did not kick back in. She was also a little confused at times and as we in the business are aware, once the patient starts getting confused the docs stop asking what they would want done… or not done. So the docs made plans to put Aunt Kay in a nursing home and scheduled her for dialysis. Becky, knowing Aunt Kay did not want that, called and asked a nurse, “Do you know that she is a DNR?” The nurse’s response was appalling. First she told Becky that she had no right to make Aunt Kay a DNR, and besides that, she said a patient cannot be a DNR unless she has a terminal disease. When Becky hung up the phone I said, “Get a plane ticket.”

    So Becky flew down. In the meantime I called the doc in charge and told him to do nothing to Aunt Kay until Becky arrived. When Becky arrived they convened a meeting with all 4 docs involved, Becky and Aunt Kay. The docs were informed that Aunt Kay was going home, that Becky would be her caregiver and hospice should be contacted… all of which occurred rather quickly.

    Becky called me several times each day with reports and for moral support. I won’t go into what I thought of the hospice’s performance… lest this forum’s watchdogs get after me for using bad language.

    Aunt Kay’s course was pretty fast. Almost immediately she started to “dream” about her father… to whom she had been very close. At first it scared her but Becky reassured Aunt Kay that it was normal and to be expected and placed “Papa’s” photo by her bedside. After that first dream Aunt Kay would say that she did not exactly dream about him, but that she could sense his presence when he came around. She described it as being enveloped by overwhelming feelings of wellbeing.

    Aunt Kay did hit the emotional wall of fear (as expected) but Becky reassured her and gave her an ativan (which she had taken for years.) When Aunt Kay asked – what if it (the fear) comes back? Becky reassured her that she would sit with her until it passed. Aunt Kay was happy with that answer and had no more problems.

    For about the last day or two Aunt Kay slipped into the expected coma (no dialysis) and crossed very easily. The entire process, from Becky’s arrival to Aunt Kay’s crossing, took 2 weeks. Aunt Kay made all the decisions regarding where she would go and what she would allow done to her (after Becky got in the doc’s faces.) She visited with her beloved “Papa” before leaving, got through the emotional barriers with very little fuss at all and was comfortable the whole time. Her handyman came to do a small task one day and as he was leaving said, “See you next month.” Aunt Kay said, “No… I won’t be here.” He asked, “Where are you going?” She said, “Heaven.” He said, “What!?!?” Aunt Kay just laughed and reassured him that it was okay.

  3. by   withasmilelpn
    [quote=req_read;1945952]I am still curious about how many hospice nurses have seen or been involved with patients who have crossed over consciously.

    It is clear that hospice nurses are sympathetic. If someone starts a thread asking for prayers or sympathy there immediately rises up a great cry as a herd of hospice nurses comes thundering in… each trying to out do all the others with expressions of sympathy.

    Hospice nurses are also very knowledgeable about symptom control. Raise a question along those lines and the responses will be plentiful, thorough and very professional.

    But raise an existential question and you can hear a pin drop. Why is that?

    Is it because there is such pressure for productivity that nurses just don’t have the time? Is it because of the pressure to focus on symptom control that your heads are swimming with details about drug effects, side effects and possible interactions? Is it because you are taught to not get involved with the personal/spiritual lives of clients? Is it that you are not trained to focus on or think about such things?

    Or is it because existential questions seem too heavy, too philosophical, too deep?

    I think that the problem here Req is making a generalization about all hospice nurses. That can alienate people from responding. I feel that you have a passion for the kind of conscious death experience you have seen, and I can't blame you. It would be wonderful if that were the case for all. However, I just don't think that is possible. Death to me will be simply as individual as people are, and their care should be adjusted accordingly. It is like childbirth, some choose to go natural, some don't. Some people deal with their problems head on, and others hide. Besides the wishes of the person we are caring for, there are often those wishes of the family members who are afterall still living and have to find a way to cope. As far as the article goes, I enjoyed it and found it informative. I think that you Req should probably write an article as well, as it seems that you have a lot to share that we would find helpful. What you believe does not in fact take away from the article's validity. Pharmacological needs in hospice are part of basic care. I think what you may object to is that the patient was described as having a 'good death" and that medications were emphasized. I did see some postive aspects as you mentioned, the patient being able to attend the wedding for example. It is just that the article was medication oriented. Just remember that those aspects do need to be taught, not all of us have been hospice nurses for very long!:wink2: Also, I think maybe you would get more responses if you started a thread about this subject. Thanks for sharing, Req. :wink2:
  4. by   finn11707
    Personal stories of gentle crossings are always the best. They really test our metal. Let's face it - being there for one of our own as they die feels very different from that journey with a patients.

    Your story of Aunt Kay reminds me of a smiling wisp of a woman I cared for who embraced her last weeks with open arms, lovingly reassured all around her through each step! Everyone was sort of raising eyebrows to her frequent comments of being "...ready and happy to go now..." as she was still up and about and fairly assymptomatic. I recall at even our Hospice team meeting, various staff who had visited her commented (with doubt) about her smiling words and easy embrace of her approaching death; inferring she was probably just scared s..less and couldn't talk about dying yet. To me, she stated strong beliefs in a hereafter, assurance of where she was going and who she would see again; satisfaction in a good life lived and a loving family. One day, I answered her questions about what she might experience at the end and what could be done for various symptoms (noted in the Hospice Guide), if encountered. I saw her only 4 times, then said goodbye-the way I often do when I am fairly certain I won't a patient again --sharing a poem or two and expressing my gratitude for the gifts they shared with me, allowing me to journey part of the way with them. I left for a 5 day vacation, knowing that I would not see her when I returned. (she died my first day back)

    What was rather surreal was that, all the while she was preparing to die her good death, others kept vigilent watch for signs of the bad death approaching. She was assuring everyone around her that she was leaving soon and that she was at peace...happy! to go...they could celebrate that with her, but they (we) who supported her couldn't trust what she knew. She slipped out anyway, with one of those bright, peaceful countenances and none of the common end of life symptoms which require intervention. Two days before she died, her daughter and grandchildren had gathered round her to sing cherished family songs and speak to her of their love for her. The day before she died she was in and out of awareness, with her daughter at her bedside. The morning she died, she opened her eyes and smiled at her daughter who was off to work for a few hours, sure it was not ending soon (or this easily). How can we better convince ourselves, families and patients to believe in the possibility of a good death and be present to it?

    A comment in one of your prior posts caught my attention. Something in the vein of medical model's directed vigilance over symptoms and their management confirming that the purpose of our being there is to mostly manage symptoms. The longer I do this work, the more I am sure of what the true purpose of Hospice work is. Sure, it has some variables...patient and family wishes, unfinished work, cultural considerations, symptom management preferences, personal and organizational budgets. But so many details fall into place when we acknowledge the greater purpose of Hospice work is being truely present to patient's profound journeys and departures.
    My son has lived, off and on, in India over the past 9 years. He is baffled by all the end of life medications used here to subdue symptoms and help people 'sleep through the end'. We have had many conversations about this in the 8 years I have worked Hospice. I once was given the gift of wittnessing the final hours of an East Indian woman's life. My son had left for another year in India shortly before her assignment to my caseload. Just before he left, he told me of a dream he had in which a glowing woman had come to him to tell him that she would teach us something; but did not state what. My East Indian patient declined rapidly from cancer which had rampantly metastasized to several sites. One day, I was called to her death bed where I witnessed the flow of Metta from her as she lay dying. She had asked for me to come, though her family were never really into 'the western nurse's visits or medicines. Visits to her home were always guided by her husband and oldest daughter in a formal, contained manner; filled with family questions of doubt about whether she had truely been diagnosed correctly. When I arrived at her death bed, the house was filled with some 25+ family members. She was radiant in her dying. She motioned for me to sit beside her on a footstool placed by her family, and motioned for me to place my hands in hers. I sat with her steady, radiant gaze on me for some time. Then she told me simply "I love you". Her eyes never left mine for the length of my stay at her bedside. She crossed 2 hours after my visit. I still see her face.

    When I shared the experience with my son, he knew its connection to his dream.
  5. by   marachne
    Finn thanks for your story. This, for me summed up so much so beautifully: "so many details fall into place when we acknowledge the greater purpose of Hospice work is being truely present to patient's profound journeys and departures."
  6. by   req_read

    Thank you again… sincerely.

    Now I will juxtapose the darker side of the evolving American model for dealing with death. Death forces us to look at our self, so it is impingent on us as leaders and teachers of dying process to set the example… to have the courage to honestly look at what we are doing.

    My wife is an oncology nurse… she tells me that when a person declines to treat their cancer, oncologists refer to and describe that in the medical record as “neglected” cancer. In other words, there is a moral judgment attached to that patient… the implication being that any pt who dares deviate from what the doc wants them to do is “negligent.” In our society death in general is seldom considered to be normal or natural… and the idea that it might actually be purposeful is completely beyond conception.

    When my wife and her Aunt told the doctors she was going home and not going to be dialyzed they tried (mostly a young internist) to counter with the argument that anyone who made such a decision must, by definition, be confused and therefore incompetent… which meant, in his mind, he could do with her as he pleased. His argument didn’t work (with my wife there to defend her Aunt) but that is what was going on in his head. That is a common attitude… and it is chilling to contemplate its consequences. All you nurses who have advanced directives and think your wishes will be respected, think again. You had better have a strong advocate who knows how the system works in place because the instant your doc decides maybe you’re a little confused your status starts slipping from “patient” towards “lab rat.”

    When hospice arrived for Aunt Kay’s admission the doctor came out for an interview. Wow! I was impressed. He did a brief history and asked about allergies of course. Aunt Kay told him she did not tolerate morphine well, that it made her confused and sometimes agitated. So he put her on morphine! He said confusion and agitation did not constitute true allergy. I wanted to intervene at that point but my wife told me to keep my mouth shut and not make waves. Of course the first time Aunt Kay had to take morphine she became agitated, but Becky countered that with ativan and lots of personal support. She called the on-call hospice nurse… who came out, called the doc and then argued that Aunt Kay’s reaction was not from the morphine (refused to make any changes.) Luckily, my wife is a very skilled nurse and managed to balance the meds she did have at her disposal very well… plus generous quantities of “being there.” Aunt Kay’s dying process went unusually well… in spite of the docs and hospice.

    My wife and I have a long-standing, and as yet unresolved argument as to whether it is best to tell (doctors and nurses) that we are nurses when we are on the receiving end in the healthcare system. I always tell… she never does. When you tell the response is usually either very good or very bad. If you don’t tell the response is usually somewhere in between. If the practitioner does not feel threatened there is a sense of kinship, but if the practitioner does feel threatened, watch out!

    Of course my wife did not tell the hospice people she is a highly experienced nurse… and she sure as heck did not mention me! But after it was all over I wondered, “Didn’t anyone ask where you came from or what you do for a living?”

    Becky had been interviewed by the hospice doc, SW, admit nurse and 2 or 3 other nurses came out at different times. Not one of them… not even one!... ever asked her anything about who she was. This, to me, boggles the mind. It is simply unfathomable. And unfortunately, it speaks volumes.

    My wife was the primary caregiver, POA, stayed day and night the whole time and is the surviving family member. This occurred 5 months ago and she has yet to be contacted by a hospice bereavement person. Have the regs changed on this or what? Is bereavement follow-up now optional?

    As for the hospice doc ordering the very drug the pt told him she did not tolerate… I don’t know if that is just pure physician arrogance or a hospice policy of “one size fits all care planning” (because its cheaper.) Maybe both, but it demonstrates an appallingly low level of “caring.” And even from a practical perspective, is it really cheaper to use your standard drug and then pay an on-call nurse to go out and argue with the pt/fam about whether the reaction she said she would have to that drug was actually from that drug?

    So the hospital docs employed all of their usual tricks to thwart the pt’s wishes, a hospital nurse gave blatantly false advice about advanced directives, the hospice doc ordered the exact drug the pt asked him not to, the rest of the hospice team showed little to no personal interest in either pt or primary caregiver and there has been zero (which I thought was required) bereavement follow-up.

    However, Aunt Kay had an ace in the hole. She had one good nurse on her side… just one… and that made all the difference.


    PS: I am sorry, but this is part of our healthcare and hospice reality. I will be more up-beat next time.
  7. by   coralynwoodson
    My story is a similar one of an active death last month. The lady I am referring to was 97 years old. She lived in the community in which I grew up in. She was a very pleasant lady, a teacher, a neighbor, a friend who inspired all of us younger children when we were growing up. On the afternoon of her death, her 93 year old sister came by to visit. She looked at the patient briefly and said, "I'll be back, I'm going to run my niece home". I saw the changes on this patient's face as her sister said these words. I told her sister, "don't go, you need to stay". She said "why"? I said "because she is getting ready to go in a few minutes". The patient, who had not opened her eyes in two weeks, looked up towards heaven and began mouthing words to someone. This patient who was too weak to cough or sneeze, held her right hand up towards heaven. She began talking but nothing came out. As best I can tell, she was saying,"I'm coming...I'm coming'. After she said 'okay', she blinked her eyes one time then stopped breathing. Her sister was so awed by this that she became overcome with grief. Her sister asked me "how did you know"? I told her, when the 'spirit' communicates to the one who is being called home, you can see a transfiguring change in their face and demeaner. She had received and answered the calling right before our eyes.You can't help but recognize that the person is receiving the call to come on home. This was the most beautiful death I had ever seen since I have been doing Hospice Nursing.
  8. by   finn11707
    I am so sorry Michael. You, your wife and her aunt deserved so much more. Yes, I think many Hospice agencies have scaled back supportive services so much that it is not recognizable as Hospice work. Obviously, Hospice staff are in Hospice because they care about easing pain and suffering. Possibly, on some level, also sense that this work can have great value for themselves. Perhaps there is not nearly enough good and practical instruction, conferences, retreats for hospice staff. Ones which focus us on the true nature of our work as well as teach ways to honor and disspell grief, stay healthy, be fully present. I have been to many Hospice conferences, workshops, retreats, inservices. It is the exception to find even a small portion of one that addresses this info.

    I experienced some of the same ambivalence - about telling or not telling - when my father died a year ago. I chose to tell, since the other 'strong voice' in my family is my sister who is an ED Nurse Manager. She fights to save lives as voraciously as I advocate for a person's right to die a good death-their way. The nursing staff in the hospital caring for my dad were cooler toward me after finding out I am a Hospice nurse and that our family had decided to discharge dad home with Hospice support. The attending physician was kind and generous with his time and consultation; supporting our large family through the process of reviewing dad's status, and agreeing with our decision to stop treatments, take him home and allow him to die, as he wished. What a learning process it all was for me! To find that we were sort of one of 'those' families...We struggled to find agreement over details of decision-making, comfort med use, even when others (even family) could visit to support and care for dad. I ate my hospice nurse pride and took a very back seat to my sister's firm plan. I think the attending Hospice staff were were relieved that no open conflict ensued. They seemed to totally understand my sister's need to care for dad her way, keeping him as long as possible in her effort to heal long standing wounds. They offered non specific sympathy to me to let me know they felt the situation.

    I am present for families and patients in a very different way now, through conflict over end of life care issues.

    And, we can't learn all of your wisdom if you are always upbeat!
  9. by   nettie01
    [font=book antiqua]thank you for all your comments. this site continues to be helpful and interesting.
    [font=book antiqua]jeanette
    [font=book antiqua]new zealand
  10. by   req_read
    Things worked out well for my wife and her Aunt in the proverbial end… and in a variety of other ways as well. For one thing, we decided to relocate down here close to my wife’s father (Aunt Kay’s brother) who is getting on in years. Aunt Kay wanted us to do that. As my previous story illustrates, the best laid plans etc. can go terribly awry terribly fast… as when Aunt Kay was very nearly sucked into a monolithic, uncaring healthcare system. My wife made it down here barely in the nick of time, but we don’t want to cut it quite that close when her dad needs a nurse and an advocate.

    Yes… there are deeply compassionate, caring, motivated and insightful practitioners scattered throughout the healthcare system. But the key word is “scattered.” You can’t count on it… or if you do, you’re taking a chance. Even if your family doc is a peach, you never know… when you need him/her most you might get an on-call doc instead, and there you are, stuck eating potluck… all your best laid plans gone for naught.

    Being on the receiving end of healthcare is quite an eye opener after spending all those years on the providing end. It’s plumb scary! In Albuquerque it took me about 4 tries to find a PCP I liked. Then I asked him, “How old are you anyway? It isn’t going to do me any good to settle on a personal care physician if you die before I do.” He chuckled and said he was a little younger than me, so not to worry. I still wasn’t entirely convinced though… statistically, docs don’t tend to live all that long. But then we moved to Florida, so now I’m back to square one. I know there are good ones scattered out there… somewhere… the trick is to separate the wheat from the chaff.

    But here is the salient point…
    People in the healthcare business tend to look at themselves and their clients as ‘us’ and ‘them.’ Hospice personnel are no exception… and perhaps even more so. But that perspective is inappropriate… by virtue of it’s being incorrect. The dying are ‘us.’ You and I and everyone either of us knows is dying. It’s not ‘them’ who are dying and we are the wonderful people who care for ‘them’… it’s ‘us’ who are dying.

    That is a thought that is a little unnerving at first… until you finally figure out what ‘dying’ actually is.

    In actuality, dying is largely figuring out who we are and resolving our life issues and relationships.

    All of which sounds pretty airy fairy… but it’s not… really.

    Finn has been gracious enough to offer some pretty practical, down-to-earth examples of both- “learning who she is,” and “resolving her life-issues/relationships.” In other words- dying.

    Part of the secret of “who we are” as human beings is revealed to us by dying people (us.) While physically dying we have the ability to transcend the limitations of the physical realm and see beyond it. We are dying all the time, but physical death accelerates that process to breath-taking speed and reveals some of the secrets behind it all.

    My wife’s coming to be near her father is an example of dying consciously. He is not dying physically, although he is old and feeble. They have (as most parents and children do) “issues.” Her spending time with him now, resolving those issues, will make his physical death (when that time arrives) much easier. They are getting their work done ahead of time. They are, in that sense, happily and consciously dying… together… now.

    When you begin to think about dying in these terms, everything changes. I have said many times that there are 2 perspectives of the world: 1- the perspective of the “living” and 2- the perspective of the dying… and the latter is far more sensible. When you begin to understand… to let it in… that you are dying as we speak… literally… then you are opening up to the perspective of the dying. And you will find that it makes more sense then the perspective of the so-called “living.”

    In Finn’s story her father was dying… and so was she… and so was her sister… all dying together, consciously… learning who they really are and resolving their relationships.

    “When the body sinks into death, the essense of man is revealed. Man is a knot, a web, a mesh into which relationships are tied. Only those relationships matter. The body is an old crock that nobody will miss. I have never known a man to think of himself when dying. Never.”
    Antoine de Saint-Exupry (1900–1944), French aviator, author. Flight to Arras, ch. 19 (1942).
  11. by   finn11707
    Again, Thank you for your well stated wisdom Michael. You have helped me see more clearly. I have always felt an added concern when a caregiver/spouse expresses that they feel they are dying too, in the process of being so close to their loved one's death. I have always responded by trying to help them understand their part is to live...honor and carry on the memory, as their loved one would want...blah blah...and the dying one's part is to now lead and teach us this part of life's journey. It is here I add poems to my visits, as they touch the soul so much better than I, and offer a ritual or celebration tone to carry through to the end. That heals my heart too, when I have grown quite close to patient and family. I see there is a greater wisdom in your words though. Understanding and helping others see too that we can only live on by 'dying' and "learn the secrets of who we are..." through the dying--participating in that journey of consciously dying; delve into ourselves, to find the truth and strength to carry on with living. That honors the journey so much more, for what it truly is (or could be) for all of us!

    I once had the honor of journeying to his end with a much loved professor and his wife who was a minister. For some 20 years, he had spent each summer cooking on an Alaskan fishing boat. He knew how to face adventure! He did not choose THIS adventure and remained determined he would survive until the end. This was partly due to his determined nature and love of life, and partly due to the fact that he had received direction from MDs 3 different times over a 9 year period to 'go home, get things in order and prepare to die' as he had cancer mets to 3 different systems. His wife, because of her profession, gently engaged him in loving talks about the fact that he would 'need to go' and philosophically how to let go; but eventually found herself feeling as though she was "literally dying too". This feeling was so overwhelming for her that she employed a team of loving acquaintances to be present with him for many hours each day, engaging in literary discourse, performing his chosen "rehab exercises", while she returned to work. His dying dragged on until everyone involved was exhausted by his insistence that he was "getting better" and would "beat this", though his body showed blatantly otherwise. My visits became only reading of poetry, and checking all vital signs (per his insistence) each visit. We decided to create a celebratory atmosphere with flower garlands, candles, music and strewn pictures of all that he loved around him. He finally was ready to embrace the crossing and slipped away with his team gathered around. One caregiver had written a loving song of tribute to him and sang it softly as he was dying. I will never forget their journey.

    These are some of my favorite poems that help and heal in our journey.

    WHEN DEATH COMES by Mary Oliver

    LOVE AFTER LOVE by Derek Walcott

    THE JOURNEY by Mary Oliver

    I AM NOT I by Juan Ramon Jimenez

    THE SOUND By Kabir


    GIFT by R.S. Thomas

    LET'S GO HOME by Rumi

    WHO KNOWS WHAT'S GOING ON by Juan Ramon Jimenez

    OCEANS By Juan Ramon Jimenez

    AND, for all us Hospice workers:

    I UNPETALLED YOU by Juan Ramon Jimenez

    I unpetalled you like a rose
    to see your soul, and I didn't see it.
    But everything around
    -horizons of land and of sea-,
    everything out to the infinite,
    was filled with a fragrance,
    enormous and alive.

    They heal
  12. by   req_read
    We are captives… or victims… of our own language.

    “Sticks and stones can break my bones but words will never hurt me.”


    We are captives… or victims… of our own language.

    Poetry uses words in a very clever way… to create momentum that suddenly throws one outside of the limitations of language.

    The word “death” is normally, in our social system and in our language, thought of as “cessation of life.” When I speak of “death” however, I do not speak of it in that context at all. There is the “death” of our body… which actually is an “end” point. Then there is the “death” of who we really are… consciousness… which has no “end” point.

    So our language is inadequate. We use one word… “death”… to speak of entirely different concepts… concepts which are virtual opposites. And we get confused… quite naturally.

    Small wonder then… when we listen to dying people talk… that THEY sound confused. The question is: Who is the more confused? Us or them?

    We here of dying people who become increasingly convinced they are fine… will not “die”… while at the same time their physical dying process is accelerating. And we say they are “confused.”

    But who is the more confused?

    They are becoming increasingly aware that they will, in the normal definition of the term, NOT cease to exist. They are becoming increasingly aware that they are NOT bodies, but are in actuality, consciousness. So they say (and rightly so) that they are fine and will not die. And we think, “Oh yes you will.” And we think they are confused.

    But who is the more confused?

    Dying is a process that forces us to see who we really are… and it forces us to resolve our relationships (which is a huge part of who we really are.) Dying process forces us to see that we are not bodies… by taking our bodies away. And what is left?

    What is left is: Who we really are; i.e. consciousness, relationships, thought patterns.

    The so-called “living” (the not-yet-dying) think we are bodies and will someday cease to exist. Both of those suppositions are wrong.

    The dying come to realize they are not bodies and will not cease to exist.

    So who is the more confused?

    Poetry uses words in a very clever way… to create momentum that suddenly throws one outside of the limitations of language… tosses us outside of our “box.” Poetry gives us the opportunity to think outside of our usual thinking patterns. It is kind of exhilarating really… to suddenly NOT be confined… not limited. And that is part of who we really are… unconfined, unlimited thought.

    We are not bodies.

    Poetry heals because it tosses us outside of our box… into who we really are… unconfined, unlimited thought.


    “Every time a child says, “I don’t believe in fairies,” there is a fairy somewhere that falls down dead.”
    J. M. Barrie (1860-1937), British playwright. Peter, in Peter Pan, act 1.

    “We are born believing. A man bears beliefs as a tree bears apples.”
    Ralph Waldo Emerson (1803–82), U.S. essayist, poet, philosopher. The Conduct of Life, “Worship” (1860).
  13. by   finn11707

    "dying is a process that forces us to see who we really are… and it forces us to resolve our relationships (which is a huge part of who we really are.) dying process forces us to see that we are not bodies… by taking our bodies away. and what is left?"

    truly! --so how difficult at the end for those who believe they badly screwed up their relationships. is end of life confusion or 'focus on the beyond' avoidance? or is it a way to resolve failures and transition beyond? for the living, attempting to understand dying, returns us to a clearer understanding of what is important in life and relationships. i wonder if the dying arrive at this learning too.

    "...lest we sift it down
    into fractions and facts--
    and what the soul is, also
    i believe i will never quite know.
    though i play at the edges of knowing,
    truly i know
    our part is not knowing,
    but looking, touching, and loving..."

    if only there were a hospice recipe to heal those who suffer profoundly at the end. i haven't found a way to not ache for them. (perhaps, reflecting that i still have some work to do too.) healing someone who is deeply suffering at the end is often difficult--even futile, so we put them into the hazy arms of morphine or haloperidol or phenobarbital.

    i arrived at a first visit to a man in a board and care facility. he lay dying, alone in his room. he was wild-eyed, attempting to raise up as i entered his room; whispering "help me" through wet respirations. i told him that his time near and that i would stay with him. i sang to him and held his hands in mine and he departed not more than 15 minutes later.

    as i watched my father pull into the restless part of dying, where he remained for a month, i knew he was revisiting troubles of long ago. dad was a story teller. he described himself as an 'alley rat' when he told stories about his life as a boy. i knew him as a devoutly christain man, so had difficulty believing his stories about the scrapes he got into. his father had been the 'town catch'. a charming, high functioning alcoholic who allowed only his family to become intimate with his demons. my dad 'took the punches' for his mom who left the marriage when dad was 13. she joined a fundamental religion, i am sure, in hopes of undoing the damage and re writing the rules for herself and her 4 teenagers. my dad joined the church with her, though his other siblings learned to cope like their dad. as a family, we felt fortunate when we visited our cousins and saw the chaos of alcohol in their lives. still, dad's deep religious faith was 'between us', taking precedence over everything in our life. the day dad wakened from that restless, month-long journey, he looked out over the vista of my sister's back yard, where the late afternoon sun was painting everything golden, and said in amazement "...our garden is so beautiful!..." his suffering was over and his last 2 weeks of dying were peaceful.

    i have worked with various theologians at end of life. often, there seemed to be some worry holding back their crossing. i have always wondered if there was an underlying of crisis of faith. it seemed the best comfort was a prayer that '...god will take care of the rest now...' concern about others or unfinished relationship issues has great power over the dying process.

    quite early in my hospice work, i cared for a woman who believed she could help her daughter 'straighten her life up' if she were present as she died. the problem was that when the daughter had come to visit 2 months before, all h--- broke loose. they argued over everything. the daughter left to return home across country, with the agreement that we would call her when mom began 'actively dying' and she would hop on a plane. i was called to the patient's bedside one morning by the son and husband who believed she was "dead or almost dead". in fact, she was ice cold and stiff, with long apnea periods. as the bed was quite soiled, the family urged me to not wait to clean her. i gently cleaned her and changed her bed while softly talking to her--saying goodbye. then i learned a great lesson! i softly assured her that her daughter would be ok and she could leave without waiting for her. the words were no more out of my mouth than her eyes opened wide with a deep "oooh!" she lived for 3 more days in that lingering state. but her daughter was present when she died.

    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 honeycombs
    and sweet honey
    from my old failures.
    (by machado)

    i know mary oliver's words are 'living' perspective. still the words comfort and challenge me to do the real work of life today, not tomorrow. "...i want to step through the door full of curiosity...when it is over, i want to say: all my life i was a bride married to amazement. i was the bridegroom, taking the world into my arms. when it is over, i don't want to wonder if i have made of my life something particular, and real. i don't want to find myself sighing and frightened, or full of argument. i don't want to end up simply having visited this world."
    it is difficult to scrutinize want to see faults clearly. we haven't learned enough about forgiving--ourself or others. hospice work is tough, even without dragging along unfinished work of one's own!

    derek walcott speaks to my heart in love after love
    the time will come
    when with elation,you will greet yourself arriving
    at your own door, in your own mirror,
    and each will smile at the other's welcome,
    and say, sit here. eat.
    you will love again the stranger who was your self.
    give wine. give bread. give back your heart.
    take down the love letters from the bookshelf,
    the photographs, the desperate notes,
    peel your image from the mirror.
    sit. feast on your life.