Managing symptoms for a �good death�

[NRSKarenRN]

found at nursing 2006:

november 2006

volume 36 number 11

pages 58 - 63

managing symptoms for a "good death"

marylou kouch aprn, bc, msn

contact hours: 2.5* expires: 11/30/2008

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

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

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

[req_read]

Posts # 218 (Em1995) and #219 (ingelein) were both very interesting.

Em1995…

Would you mind sharing a description, as best you can, of the example of conscious dying you mentioned?

Also, I have spoken to lots of groups but kids? Brilliant! You go girl!!!!!!

ingelein…

I’m a badger too you know. Most folks know us as “cheese heads,” but we were badgers first… which came from the first white settlers (after the resident Indians were ripped off and slaughtered.) Anyway, the first wave of whites were lead miners. They dug holes in the ground to mine the lead, then lived in the holes… like badgers.

But I digress…

The idea that some whose lives seem rather a mess may, in the proverbial “end,” turn out to have had the greatest opportunity for growth.

Also… just throwing this out there… my wife is an oncology nurse. One of her recent pts (terminal) remarked to her the other day that his sense of time is changing. She didn’t get a chance to ask him more but hopes to see him again next week. Has anyone else come across similar comments by a terminal pt?

Michael

[Em1995]

Michael and all..yes, I'll share the experience with one of the people who had a "conscious death". She was 92, as sharp as a tack and just a love! She lived with her daughter who was a devoted caregiver. Now, being in a small community, this elderly woman knew my mom. My mother used to do her hair once a week and every Christmas this wonderful woman would make all of us a special Christmas dessert with exquisite pastry and custard and chocolate! So, this past Christmas, she was my patient and told me she was making me this treat, once again, for Christmas. She was end-stage cardiac and was quite comfortable, but did treat her dyspnea with a little morphine. She was very open about her dying and shared so many feelings with all of us. I'll never forget her sitting in her adorable, snugly cozy living room and happily sharing memories of her life as a young woman. These memories included wonderful times and not-so-wonderful times. But, we listened intently and somehow I knew she would never get to make that Christmas treat. It was clear she was ready to make her transition. She died that night, in her sleep, with a smile on her face!

Some asked "well, what was different for this patient? She had her family there, people were truly present for her, no one was afraid to talk about dying, feelings were compassionately expressed....the FEAR wasn't there because the avoidance wasn't there.

Now, this doesn't mean to say that everyone has to "die awake" so to speak....to me, dying consciously is a process where everyone works together to help that patient feel our connection because we are all united by a common thread. It encompasses mindfulness and presence...something our society needs to re-learn as life is oftentimes such a "race" and we forget that we can be still and look and listen. Our awareness of death deepens our commitment to awakening and to living a life of value and meaning. Oh...I'm probably getting too philosophical......

Thanks for listening...

[leslie :-D]

i agree w/you, em.

that one needn't be awake at the time of death, in order to qualify it as a conscious one.

as long as the pt, family/friends, have accepted death's limitation here on earth, and can prepare for the next transition, then all is whole...and conscious.

sounds like your 92yo pt's death, was indeed, very meaningful.

leslie

[req_read]

Thanks Leslie & Em…

I agree that it is not necessary to be awake at the moment of death to die consciously… and confess to having muddied the water on that account with some of my posts. Thanks for the clarification.

Conscious death has to do with choice… being aware that death is imminent and choosing to embrace it. Whether one happens to be awake at the precise moment of crossing is irrelevant.

Against a backdrop of the consensus definition of “death,” i.e. “end of life,” choosing to die seems strange, or even macabre.

Against a backdrop of a rational definition of “death” however; e.g. a “transition” to another level of existence (having completed most of the tasks one came to this level to work on) then such a choice seems perfectly sensible and appropriate.

I believe there are cases when a person chooses to leave while in a dream state. From our perspective, these folks would appear to have “died in their sleep.” Even though they were not “awake” at that moment, they still moved on consciously and as a matter of choice.

Then there are cases where it seems that a person might have seen into the future… seen their death before it happened. We have all heard of (or perhaps know of personally) these kinds of cases… and they are interesting to ponder. One might wonder, if a person knew he was going to die, why would he not try to avoid it? One possibility of course is that he might also have seen where he would be following death and was content with going there.

Conscious dying, like conscious living, has many forms or ways of manifesting. Probably most hospice nurses have seen examples, although might not have thought about it in those terms.

Michael

[coralynwoodson]

Managing symptoms for a good death is indeed an atribute of a good nurse. I work for a hospice and this is part of what I do not only as a requirement for being a good nurse, I do this because it is humane. It is degrading to the dying person to be pittied and watched to have distress and not be given the comfort he or she deserve. Most of us have led comfortable lives. Lives without too much pain, suffering. Death can be our friend true enough; but, when someone tells me that " I know my loved one is going to be healed of this disease" and I know that they won't in the way that they think they will be, I then explain to them, death is a healer. To be healed, we see that a person no longer suffers the affects of a disease riddled body; pain, temperaments, confusion and so on. Does not death end this? As we know it, death causes a transistion form life to another form. Life after death now or life after death later, or no life after death at all, it depends on what is accepted by the believer. As for me, I believe, when we are absent in the body, we are either with the Lord or where ever it is designated for us to be. No one came back to tell us. All of this is important for the loved ones of the person who is dying. Lets give people the best celebration of life at the end of life that we can give them. This also manages symptom for a good death. Enjoyed everyone of your threads. They are truly great ones. Coralyn:yeah:

[nettie01]

:yeah:wow!! i remember you guys! i participated in this thread back in 2006! i've been trying to work out where to 'break in' with my practical issue... it's all very interesting, your thoughts. thanks....

i'm writing to you from new zealand again. thank you for any advice from you experts.

i'm a medical nurse currently working in long term care and i've found myself disagreeing with colleagues recently about when it's right to give morphine. i'm very happy to give morphine for pain, respiratory distress and perhaps anxiety but once i was caring for a patient who'd had a large stroke and was unconscious. the decision was made not to hydrate or nourish her - to 'let her go'. the doctor prescribed a morphine/antiemetic/anxiolytic mixture in a syringe driver but the patient looked peaceful and didn't appear to be in pain so i talked to the doctor who was happy for us to use the prescription when we thought fit. another colleague strongly disagreed and said i should give it to the patient, to keep her comfortable. i prefer to give medication to control symptoms otherwise i feel like i'm doing euthanasia.

it seems to me that some nurses move into a mindset of "this person is dying now and we will do the thing we do for dying people - give them morphine." i don't like to sedate people unecessarily - they might still be able to talk to relatives. (perhaps not the pt in the example, but others may).

thank you for your thoughts. i know the issue of conscious death/alertness has been covered. i guess if i just read all the pages of this thread i'd have all the info i needed!

jeanette

new zealand

jeanette

[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?

[req_read]

finn,

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.

Michael

[withasmilelpn]

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:

[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.

[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."

[req_read]

finn…

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.

Michael

PS: I am sorry, but this is part of our healthcare and hospice reality. I will be more up-beat next time.