Friday, November 18, 2005

I have seen people die.

In that sentence, in that thought, the plural form is the strangest part.

I've been doing the death-in-the-headspace thing a lot lately, partly because of my patients and partly because of my aunt.

A side note: the previous entry, the one that Jodi responded to, had a long section about the decision my aunt made earlier this week to die. After I'd posted it, I got an email from Mom saying that she had indeed died, early this morning, and so I edited that portion out. It seemed inappropriate, somehow. She'd made her decision and followed through, and I didn't want to dissect it after the fact.

Anyway, back to the death-in-the-head thing.

The most sobering thing about doing what I do for a living is this: it means that I have done something that, as far as I know, the rest of my immediate family has not. I've done it enough that it's become, at least in the outlines, fairly routine.

I've hugged family members. I've answered the call bell or the person who comes out into the hall with *that tone of voice* or *that look* that means that the person in the bed has quit breathing. I've caught up another nurse on the way to the room to verify the lack of a heartbeat. I've called more residents than I care to think about to verify our verification and chart time of death. I've walked them through the paperwork and told them where to sign.

And, more than that, I've been alone with a number of dead people. The dead are peaceful; they don't ask for cups of coffee when they're NPO or talk politics. I've bathed bodies, removed tubes and wires and IVs, wiped off things I couldn't identify and would rather not think about. I've talked to those people as I've done it, hoping that maybe my persistence in treating them as a living person would speed their souls on to wherever souls go.

I always leave the window open when I do this, no matter the weather. If I have a soul, and if it leaves my body after I die, I do not want to have to work to get outside and fly away. No elevators for me; give me an open window. Supersitious, yes, but part of the private ritual I have.

None of this is stuff my parents have done. My folks, who have a wider experience of life and a much greater understanding both of how stupid and how wonderful people can be, have not (to my knowledge) been around when somebody's died and then taken care of the body. I know my sister hasn't, or I would've heard about it already.

More than that, I've done it *multiple times*. Which is a stunner, when you think about it.

It opens an experiential gulf that I'd not thought about before today. Those of us who midwife the dying are a weird group; we're not generally skeeved out or frightened by the thing that is most taboo in our culture. Most of us have dissected at least portions of bodies; all of us have talked to those still living about the process of dying. It's hard work, as hard as having a baby, and with much the same rhythm as birthing.

The people who understand that, who don't get flipped out by the thought of a person not being immediately available in the body, tend to get chosen for the palliative care assignments on our floor. Oh, yeah, we always give the newest nurse a couple of DNRs who are about to go, just to make sure they can handle it, but after that, there's a cadre of us who seem to get assigned the dying and soon-to-be-dead over and over.

We self-select through our attitudes and our actions. The folks who make the assignments recognize that.

There's still a part of me that wonders, every time one of my patients dies, what on earth those idiots at the nursing school were thinking when they gave me my degree. What made them think that I could do this well? Why am *I* the one that has to be the shoulder and comfort for the living? I ask that not because it's a burden but because I feel so unqualified. The person who takes care of your dying father should be unflappable. Calm. Sympathetic but not overwhelmed by emotion. Distant enough to give you privacy, but not appear cold. I feel too imperfect, too undeserving, to do that job.

And every time, that gulf that lies between my and my folks and my sister, between me and Chef Boy, between me and the other average Janes on the street, grows a little wider. It gets a little deeper.

But I don't worry. I have the gut feeling that this is a gulf that will eventually grow wide enough that I'm back on the same side as everybody else. It'll be more like a discarded orange peel and less like an enforced distance. It'll be interesting to watch that process happen.

31 comments:

  1. Anonymous5:19 PM

    I too am a nurse who took care of the dying while working at a large cancer center. I became a nurse because of the nurses who took care of my mother when she was dying at that same cancer center. They were wonderful, but far from in control of their emotions and unflappable. Its the ones who cried who I remember. Their tears were like a gift...It made me think that my mother and my family had touched them . The patients I remember best are the ones I cried for/ the families I cried with. New nurses are frequently embarrassed when they cry at the bedside of the dying and I always tell them what a nice thing they are doing.

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  2. I don't know that "unflappable" means "not crying at the bedside". I consider myself to be pretty darn unflappable, but there have been times that I've cried with family members...the difference, I think, is the ability not to get so shaken that you forget who the person is that you're ministering to at the time.

    You and I agree; it's just a difference of wording.

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  3. Anonymous6:52 PM

    Hey Jo

    I have always felt that hospice nurses are (or should be) very special people. It is hard job to help someone transition. But, it is part of the responsibility. And it is a gift you can give them.

    When I put a patient on hospice, I'm asked if I want to continue as the physician of record, or do I want to cede that to the MD affiliated with the hospice. I always want to continue the relationship. I signed on for the whole trip. Can't get off when the going gets rough.

    I'm in a relflective mood today too. I don't have your reason. Mine is that I just lost a sweet 94 y/o guy who'd been my patient for forever. I sure as heck didn't like the page at 5:30 (my umpteenth for that particularly busy night). But, I was glad that it was me that was on call & that it was not some stranger calling the family in the night.

    No, you will never get used to death. You will never get blase' about it. But, our job is to make the transition as 'good' as possible for the patient and the folks left behind.

    And I'm sorry about your aunt. Take care of yourself.

    V

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  4. I'm sorry to hear about your aunt.

    This is a great thought-provoking post. In the OR, nurses may witness death - but is usually no connection with the family. It still impacts those in the operating room, but I think it would be different if the nurses really knew the patient. Knowing myself and how quickly I get attached to people, I chose the OR. Sometimes I wonder if this gift would be better served in a unit.

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  5. I'm sorry to hear about your Aunt, and I still hope it was peaceful.
    It's kinda sad for me to say as an RN student that I've already seen more people die then the fingers I can count on one hand. I suppose it's because I work as an aide on a unit that takes in the DNR's from other floors. Maybe it's because my own husband died in my home, my co-workers are OK with me being apart of the "Death" team.
    It doesn't freak me out,when I'm cleaning up a body, my concern is how the family is doing. My belief is the patient is no longer there, now the family needs the care.
    When I graduate, I'm thinking about going into Hospice work, however I'm not sure I could do it everyday. I'm sure you more expeirienced nurses can verify that it must wear you down right quickly.
    Thanks for the thought provoking post.
    ~Jodi

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  6. Anonymous2:55 PM

    Hi! I'm sorry to hear about your aunt... Reading this post just came at a timely manner. I have been working as a palliative nurse in an inpt unit for almost 5 years now. The nature of this job is truly different from anything else. At one time, I took care of three pts who all passed away during my 12 hr shift. Truly overwhelming! Even my friends who are also nurses often tell me, "I don't know how you can do that". There's no concrete response to that. All I have are the feelings and experiences I take with me when taking care of someone who's dying and supporting the grieving family. I have been thinking of a change in my career direction but your post made me rethink my decision. It made me appreciate more what we do. Thanks.

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  7. Anonymous4:16 PM

    I love the fact that you leave the window open for the soul - it's a beautiful thing to do.

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  8. Thanks for your thoughtful post, and the image of leaving the window open is beautiful and poignant.

    I've been writing alot lately about a patient of mine who is dying at home, and a few months ago I wrote about another dying patient and how I was at his hime when he died. For me, it is the most human and humane thing to do---guide patients and family through the process. It is a priviledge and an honor, most humbling.

    Thanks for being out there doing what you do.

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  9. Maybe because I made peace with my eventual demise way back when I was an existentially-charged college student, I also seem to get put on the "death watch" team frequently. 'S OK. I just emit "depeche-mode vibes."

    Room 18. That seems to be a grim reaper's hotspot for us now. We have recently had two patients who have occupied that room go for their dialysis (on another floor) only to code and die there.

    And room 4. We have had several new admissions come to that room and then immediately start circling the drain, and either die in the room or on their way to the cath lab.

    Weird.

    All the other rooms are "safe" for now.

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  10. Anonymous1:43 PM

    I am a nurse practitioner in a clinic and have had several patients die recently. Yesterday for the first time, I went to the hospital to say good bye to a favorite patient. He died before I could get there. I wanted to hold his hand one more time, or give him a backrub, or just sit there. this patient's death has hit me harder than all the rest.

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  11. Anonymous1:56 PM

    Hi Jo - I thank you for sharing and for jarring loose something in me that reminded me of why I am a nurse. Years ago I worked as an Oncology Clinical Nurse Specialist and cared for many patients who eventually died. It took me a while to figure out that even though I gave a lot (I put myself on call 24/7 when then end was near), I certainly received more from each patient than I gave. Every one of those special folks and their families is still a special memory.

    During that time, too, I recall commenting to the Oncologist, a very special physician and friend, how frustrated I was that I cried so often. He responded with words that resonate to this day: "You don't worry when you cry; you worry when you can't cry."

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  12. Anonymous2:09 PM

    I am a nurse in an ICU and one time I had to care for a patient that had died by wrapping her body in a way too small shroud and tying her arms and legs together with way too small string so the funeral home could take her. I kept saying to myself...this is just not right...(no the family was not in the room) but what could I do but carry on. The good part is the family was very appreciative of my care of their dying and young wife/mother and yes there were tears and hugs. I cherish their written note of thanks. But like you wrote...it is very different what we do and few can relate to our experiences.

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  13. Anonymous3:38 PM

    I had the honor of caring for my mother the last week of her life. She had been fighting bone cancer for three years and had reached the point where chemo wasn't helping. I remember the day she went into the hospital for a low WBC count was also the day I received my nursing license. She had started withdrawing from family and friends, having started the dying process. Decisions were made to place her in inpatient hospice care, after being there for 3 weeks, the medical director stated that she needed to be placed else. My sister and I made the decision to bring her home for her last days. My mother was my first patient as a nurse. My husband kept advising me to be her daughter not her nurse. I found it easier to be her nurse 80% of time to make her impending death easier to deal with. I found my mother motionless the morning of her death, having given back to my mother everything she had given me my entire life, loving care. My husband reminds me that I can say I am glad I did what I did without thought of my comfort, nursing with compassion as all nurses do.

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  14. Anonymous8:34 PM

    One instance sticks with me from my years as a tele nurse. A woman was dying - she knew it, it was coming very soon, there was no way around it. A chaplain was summoned. He was a sweet black man, completely different than her usual elderly white clergyman. He surprised us all.

    He sang to her. The most beautiful hymn, the most resonant voice, full of joy and praise. It came very close to making you actually want to die and go to heaven, it was so glorious.

    As he left, he told her not to be afraid, she was going to finally meet the Lord. And he told her he would meet her again there when it was his turn.

    I thanked him for the beauty of his song with tears in my eyes. And when I went to check on my patient, I could see her fear was gone.

    I always wished I could do that for the patients I've been with when they died. But I guess that's what the chaplain is for.

    I just serve as a midwife to the person's passage to the other side. And I always feel lucky that I am allowed to.

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  15. Anonymous9:21 PM

    I worked in a hospital setting for 23 years, mostly in ER and ICU. I have seen many people of all ages when it is their time to die. I have learned many lessons---that nice people stay nice, even when suffering and at death and mean, nasty people only get meaner as they die. I have always tried to give nursing care as if the pt was my family member as much as I could. The little things mean the most: a touch, a little time to talk to them, an ice chip.....I came to highly resent the current hospital environment where "acuity" means the most--more tubes, more treatment. This gives you severe understaffing just at the time when people are dying and you don't have time to just be there for them. I finally gave up and quit hospital nursing because it was just too much for me emotionally. I always felt guilty about what I didn't have time to do, instead of feeling good about what I could do.

    I also took care of my mother at the time of her death. It truly was an honor to be able to do for her what I had done for others for so many years. We brought her home from the hospital just 5 days before she died, and with the help of Hospice.

    I was kind of shocked and surprised that so many of the nurses in the hospital just ignored my mother because she was diagnosed with a terminal illness. It was as if she just didn't count as a patient anymore if she couldn't be cured. There were a few who were wonderful with her and with us (family) and helped us to cope with her sudden and short illness. I will remember them always.

    I know for myself, having been a hospital patient numerous times for many different illnesses over the years, that it has changed my way of nursing. I understand how important ice chips and tissues can be. It is such a vulnerable time, and you are terrified that people just won't care enough to hear your call light when you need them.

    Please nurses, just try to treat your patients as you would want your own family treated---with kindness and EYE contact, and with enough information to cope with what is going on.

    My true friends, nurses of course, have all signed a pact. We promise to take care of each other in the way we know it should be done. We know what hospitals are like these days, with reduced reimbursements and severe staffing shortages.

    We just hope there will be a special nurse for us at our time of death, since so many of us are retiring or giving up on nursing. Since we have all given 150% of ourselves all these years, we don't think that it is too much to ask.

    I also hope all these bureaucrats who have decided nurses are not necessary to patient care and have cut reimbursements to the bone have their day of reckoning. I hope they or their precious family members have to be hospitalized one day and there is NO nurse there to take care of them and see how they like it.

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  16. Anonymous6:56 AM

    I am a BSN nursing student. My first patient in my med-surg rotation coded, and then died. I that this intuition that his death was immenent..yet physical states were different. 30 minutes later he arched up, eyes wide open, and struggled. The code team stopped after 25 minutes, after the son stated that his father would not want to be intubated.
    What I will remember most is how much I cried because of the son's rection to his father's death. I, as a student, gave him a hug, and let his body sort of collapse and weaken for a moment, while I tried to hold his up. I was not with my patient after died, other students prepared the body. Instead, I was with the son while they were working on his father. I was with the son when he could not remember the name of the funeral home, and we looked together in the white pages. And I was with the son when we both cried...That is what I will remember. It is a human emotion to cry.

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  17. Anonymous10:15 AM

    I too have opened the windows and removed the windowscreens in the ICU I worked in to ease the spirits passing to the great beyond....so sad that we can not do that in these days of modern hospitals isn't.
    So sad also that because of acuity systems we don't have the time to do the special things for patients and their families at their passing. Having lost an Uncle and a dear frient to cancer in the past 3 months I am so glad that these "patients" and their families chose to use the services of Hospice. My cousin was able to keep her father at home to the end, and he went very peacefully in his own bed. My friend on the other hand felt he did not want to die at home, so he spent 6 days in an inpatient hospice unit. The love, tenderness and caring he and his wife received from the nurseing and pastorial staff there was touching. They truely were their angels of mercy.
    Crying is not a weakness it is a sign of compassion, Let us not forget that.
    DAD

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  18. Anonymous4:59 PM

    I have just discovered this blog and it is such a great feeling to know that other nurses feel the same as I do, that is , it is an honour to care for those who are dying. I work in a NICU and I feel that helping these babies and their families when the end is near is a gift I cherish. I also shed a tear with them and know that they were not alone at the end. Jo I am sorry about your aunt.

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  19. Anonymous6:49 PM

    Having been a Hospice nurse for the past 8 years may I say, "Good for your aunt!" So many of my patients who were able to stay verbal until the time they crossed over, tried to describe the beauty of the spiritual world and ALL of them saw loved ones who came to help them cross over to the other side. I know we go on to something and someplace that's beyond human description.

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  20. Anonymous6:58 PM

    I thought about my Dad today...A year ago, he was a patient upstairs in the hospital where I work. He was feeling bad because he knew he would be in the hospital over Thanksgiving. I told him he wouldn't be alone, (Mom had died 16 months earlier) because I was scheduled to work Thanksgiving-(and what am I anyway to you, Dad, mashed potatoes?!?), so I would be in the hospital, too. I promised I'd make sure we had dinner together on Thanksgiving. And, we did. The nurses who worked with me that day had made and brought in thanksgiving fixings from home, and I took some to my Dad. We ate together that day, I in my scrubs and him in hospital PJ's. I'm glad we had that time,and he was happy. In April, he went to be with Mom.

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  21. Anonymous10:31 PM

    strange
    I wrote about this a few weeks ago on my own blog. as a critical care nurse where patients consent to their dangerous surgeries having them die isn't as shocking as trauma.
    I think that with consent you at least get a chance to say no thanks after hearing all the ways the surgery could kill you.
    what is always surprising is families. Heart surgery has become so routine they don't believe the warnings..they don't get that just because we do something every day it doesn't mean it can't and might kill you.
    I too always get the dying or patients that desperately need an advocate to help them die.
    Over the years it has become a weird speciality..convincing family that they have done all they can and we have done all we can and it's time to withdraw the machines and let the patient go.
    a part of me hates it and another part of me says I have to to get the patient some mercy and dignity.
    it's hard all the time.

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  22. Anonymous12:46 AM

    A few years ago, a coworker told me I was"good at dying". OK?! I now know what he meant. I am also part of that unspoken 'death team'. I don't mind it; what a privelege it is to be a part of a patients death. Having worked L&D before, I liken it to a birth. While there is sadness and overwhelming grief,it is also a part of all of our lives, that we all will experience eventually. To ease someones passage out of this world, to comfort their loved ones left behind is a great honor we have been given as nurses. The only difficulty is in trying to communicate that to folks who don't help people die for a living. We are an odd bunch indeed, but we are great at what we do.

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  23. Thank you for your insightful and poignant post. I am a nursing student about to start my last year at University and it gives me a great feeling of pride to know that I am entering a profession with such compassionate and caring colleagues.

    My faith in the nursing profession has been boosted immensly since I started reading everyones blogs. It has helped me to not focus on the nastyness and bullying that I have experienced on my journey so far.

    Sorry about your aunt.

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  24. Anonymous11:07 AM

    Our culture has put "death in the closet" if you ask me and it's too bad because there's a lot for us to learn from it, as you well know.

    Up until the last fifty years or so, death was a common part of family life. It happened at home, it happened to loved ones young and old. Kids not only were involved in caring for those who were dying, they often were the ones dying. Attending funerals was almost as commonplace as going to Bar Mitzvahs or first communions.
    A friend of mine's mother just died and she cared for her to the end. She said to me the other day. I can't believe I am 37-years old and this is the first person close to me who has died. I'd never been to a funeral before in my life. I always thought it was creepy when people talked about enjoying caring for their dying parent. Now I know. It was an amazing experience. Painful but incredible."

    I enjoyed reading about your "rituals" and experience of it. And I honor your willingness to help strangers through this passage.

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  25. Anonymous9:24 PM

    I will forever now forever open a window, when I think a patient is about to leave. Thank you for this wonderful thought. I hope this will catch on in my telemetry unit.

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  26. Anonymous8:12 PM

    Hi--I have been a hospice nurse for 11 years, and have been with many, many people during the time of death. The oldest was 106 and the youngest 17. I feel it is an honor when families let you into this intimate space, and I feel sort of like a nurse in the obstetrics unit--only I am helping birth people into the next phase of life. It is often very sad, and sometimes joyful. It has definitely changed my life, because I really can't sweat the small stuff. And it is a great way to practice nursing, because a hospice nurse DOES have the time to stay with people and talk to them and love them, while doing a really great job of easing suffering and giving dignity and grace. It is my calling. Anna B.

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  27. Can any of you help me? I have seen my father die on 12th February. He was 94, has swollen feet for a long time, couldn't pass urine, and cold hands. His physician refused to do a house visit and asked us to admit him to teh hospital. Itw as his wish that when teh time came he should not be admitted he wanted to die at home. ANother doctor came home, gave him an injection which he said would gibe relief, but he die of a heart attach that nigh, with me and my 84 yr old mum holding his hand and praying the roasary. I am unable to remove the painful memory of that night, i donno what my mum is feeling, she's tougher than me but is old and getting sick now. Any advice, for me and my mum?

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  28. "In that sentence, in that thought, the plural form is the strangest part."

    Well said, Jo. Being a nurse is indeed a difficult and yet rewarding career, which no one else must discriminate. I'm proud of nurses as well as many medical personnel. Your work as a nurse is very valuable as well as hard and yet many of the nurses are very dedicated to their work, eh.

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  29. I just wanted to thank you for posting this.

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  30. You not alone on your side of the divide. You have such a way with words.

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  31. I have been with my aunt, grandmother and mother when they passed in the last 8 yes and my Dad passed 8 weeks ago. It certainly makes me contemplate my own mortality. After struggling with it for many years, I now feel very peaceful with it since my Dad's death. Perhaps it's because he wanted to go and his journey was one he has wanted since my mother went 4 yrs ago. It seems a better jouney without fear or resistance.

    I have thought about death from an early age as my older brother died suddenly when I was 11. It certainly made a difference when persons involved in proving support to both us and our family members were "in the moment" with us. Is is a vocation for sure. I do think that this work must be emotionally draining so take care of yourselves, love yourselves because you deserve to be cherished as will my memories of the people whe made the most difficult jouney bearable.



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