Wednesday, April 11, 2012

Letting Go

This is a a post I've been thinking about for a long time, but real emotions take me a lot longer to process and express than I usually have time for. Also, I'm about to get all religious on you. Consider yourself warned.
Where I work, we see a lot of death and dying. Or rather, near death and dying. A large portion of our population are nursing home patients. Most of them are dealing with some degree of dementia. Virtually all of them have no hope for recovery. Virtually all of them are full codes.
They come in, thin and frail, covered in bedsores, mouths crusted in weeks worth of oral secretions, breathing their last breaths. Their families come in droves. They insist on intubation. They want everything done. They pray for healing over the brittle shells of the people they loved. The process is sad and cruel, difficult to watch.
I have no doubt in the power of prayer, but what they pray for puzzles me. I think back to my first job in high school- watching the young kids in my church's nursery. One of my charges was a sweet, tiny little boy with severe cerebral palsy. He didn't speak words, and his doctors speculated he was blind, but he could hear and responded to every little sound. He would smile at the voices of his kind, gentle parents and giggle at the tickling and teasing of his doting older brother. He loved music and would often grin and make sounds along to what he was hearing. He'd stay behind in his chair while the other kids went over for communion, and I'd stay with him- on the days he fussed, I would sing to him. I took care of him at home every now and then when his parents went out- they always joked that he had a crush on me.
He started getting sicker a little after I went away to college. I visited him in the hospital during Christmas break-he was discharged on hospice care a few days afterward, and a little while after I'd returned to school my mom called to tell me that he had died. I came back into town that weekend for his funeral, still confused and sad. I remember looking at his parents and wondering how they were keeping it together.
My rector gave the sermon that day, and he talked about how much our little man loved being pushed in his wheelchair with someone running behind him, and how much he would giggle at the feeling of the wind on his face. He talked about how heaven as we believed in it was a place beyond the limitations of our broken physical selves. How we become whole and perfect. And he talked about this sweet little boy, and how he was there, running around at last. I cried as I watched it in my head. I still cry thinking about it today, thinking about my grandfather, unable to recognize any of us through the fog that was Alzheimer's at his death, back to building his complex models, back to wiring little devices, back to fixing my and my brother's toys as fast as we could break them.
We say we believe in these things, and we love these people so much. How could we deny them their eternal reward for the selfish purpose of clinging to their broken bodies a little while longer?

On the other hand, last week, I took care of an older lady in the early stages of dementia. She was dealing with a score of other medical problems, none of which were immediately fatal, but enough that she was living in a nursing home. This particular night, she had taken an unexpected turn for the worst and came to us with agonal respirations and a thready pulse. Her family and neighbors flocked to her bedside. Except this time, not to futily try to hold on, but to wish her goodbye. Her son sobbed as he talked to her, telling her that it was okay to go now. About what a great mom she had been, and about all their loved ones who were waiting for her. He even talked about her rotten little dog that she had loved so dearly, and how he was ready for her to come home. They covered her with kisses, and she died within a few hours. This has seriously been one of this most memorable and oddly, most beautiful experiences of my nursing career. I was able to walk the family through what was happening, to comfort them and assure them that they were doing the right thing. I will always remember them and I think her son will remember me too.
I don't want to sound all angel of death here, but I guess my point is, if we say we really believe in a higher power and a better place, why do we struggle so when the time comes for someone we love dearly to go there? Also, that I'm seriously considering quitting ER to become a hospice nurse.

36 comments:

  1. Love your blog and posts like this one are gems. I hear what you're saying and hope I never have to go through this with my folks. I'll remember this post if I do, though. Thanks for writing it.

    ReplyDelete
  2. People in the outside world don't "get" why it's rewarding to become a hospice nurse- helping facilitate "good deaths" like that, is precisely why. Knowing there are things that all the technology in the world can't, and maybe shouldn't, fix- and helping patients/families achieve their goals related to a peaceful, dignified remaining time on earth. I've also been seriously considering a change from Onco to Hospice. Good luck in your decision making, and thanks for the amazing post.

    ReplyDelete
  3. Beautiful post. I think many family members get hung up on the thought of "do something/anything" out of fear, and possibly guilt, of being the one to say "don't do anything". I initially struggled with that guilt with my mother, of doing nothing and allowing her to die. But I also knew that any sort of treatment was just delaying the inevitable. We had hospice come in and I had the honor of being with her as her final hours wound down. The hospice workers were wonderful - very supportive and talked us through every step of the process. She was able to die peacefully, in her home, in her bed, surrounding by her loved ones. I can only hope my end is as peaceful.

    ReplyDelete
  4. those are the moments that you will remember forever. what a great post.

    ReplyDelete
  5. You would make an excellent hospice nurse. Your empathy and compassion are wasted there in the e.r. Altho, I would really miss your blogging about it.

    ReplyDelete
  6. Your empathy and compassion are NOT wasted in the ER! Many nurses can become jaded and if you're able to retain your emotional health and express it to your patients, then certain pts will surely appreciate it.

    ReplyDelete
  7. This is the hardest thing to do for your loved ones. Glad you could be there to assist. It still makes me cry for my Mom and Dad. But it is important to know when to let them go.

    ReplyDelete
  8. I don't know why folks who believe in some form of god and heaven won't let their loved ones go. I personally don't believe in any of it and I would not make a loved one suffer the way most religious people seem to do. I have taken care of too many dying people to think grandma with dementia/terminal cancer/whatever needs to a be a full code.

    And agree with other above commenter: you are not wasted in ED. But if you need to make a change, make a change.

    ReplyDelete
  9. I worked in oncology in the middle of the bible belt and was amazed again and again to see this same thing. People would do amazing, crazy extreme treatments to "give time for the miracle to happen." I never understood it either, but the more religious someone was the more they did the full codes + more. If you haven't read this article, I think everyone should. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande
    A beautiful article about exactly this topic of letting go.

    ReplyDelete
  10. Beautiful post. Thanks for sharing. I love how nursing has life moments such as this one. I agree with you completely, sometimes the best and greatest thing we can do is let go. Follow your heart to hospice, I know you'd be perfect for it- keep us posted!

    ReplyDelete
  11. "I was able to walk the family through what was happening, to comfort them and assure them that they were doing the right thing. I will always remember them and I think her son will remember me too." Absolutely he will. I will never forget the hospice nurse that walked the same walk with my sisters and myself when my mother was dying. What you gave this family is every bit as important as the work you do to relieve suffering in more physical ways.

    ReplyDelete
  12. i so enjoy reading your blog; it's consistently insightful and entertaining.

    i'm starting graduate school (ma in divinity) in the fall. i have a strong interest in hospice work (as a chaplain).

    thanks for posting!

    ReplyDelete
  13. I'm all big and tough and whatnot, but that made me cry and cry. Thank you.

    ReplyDelete
  14. I discharged a pt recently for home hospice, as the emts were rolling him out he turned to me & said thank-you & if I don't see you again I will see you in heaven, I think about that all the time.

    ReplyDelete
  15. Both hospice nursing and ED nursing are sacred callings, if -- and only if -- you are inspired to take on the job and can care for YOURSELF enough to avoid burnout and compassion fatigue.

    You, Hood Nurse, often sound like you are wrestling with the demons of burnout in the ER. That doesn't mean you can't triumph and have a great career in emergency nursing; it just suggests you ought to reassess your career path and only re-commit if you know you can be happy and fulfilled in the ER. Yes, happy.

    As for your question about how people who believe in an afterlife can resist death when it's time to let go, I don't think belief can trump loss. Whether we're religious or not, we bond with our loved ones and need them present and alive in this world, here and now.

    The idea of heaven helps people reduce their fear of death, but it doesn't inoculate them against loss.

    ReplyDelete
  16. That is one of the best things about the veterinary world. We have the ability and the duty to let our four-legged friends go with peace, dignity and grace. I often wish the same were true of human medicine... In the meantime, you do all you can for those that come in to your care, even though you may not agree with their decisions or their family's decisions and need to hold on to the last shred of their loved one.

    ReplyDelete
  17. I couldn't agree more. I've posted about this issue more than once myself. People die, it's important to realize that extreme measures are undignified and painful. Also, hospice nurses are the absolute best. When my mother was dying they stepped in and supported her and the rest of my family, allowing me to be a daughter, instead of a nurse. I was very inspired and considered leaving the ER to work in hospice. But what I do instead is do a lot of end-of-life counseling in the ER. When a patient is dying, I speak with the family to help them sort out what their feelings are and what to expect as the patient dies. It's very sad, but very rewarding, as a lot of docs are uncomfortable talking about death to the family, and many other nurses are too. I feel it's my duty to advocate for the patient and their family in this case. Making the decision to allow a loved one to pass quietly is brave and compassionate,many I make sure family members know that.

    ReplyDelete
  18. My sister! former ER nurse, ER dept mgr....left to become a hospice nurse and says it's the best decision she's ever made! Nice post. Thanks

    ReplyDelete
  19. Great post. I think a lot of why families continue to hold on comes down to hope. Even when all the evidence points to no chance for recovery and they've been told there is no chance people still hope that their loved one will "wake up and be fine" or back to the way they used to be. While I know that in many instances hope is a good thing I also know that it can be paralyzing. It can hold you back from seeing other options.
    It can be so hard to watch families try so hard to hold on to their loved ones when you know there would be so much more peace to letting go.
    I've worked in Oncology before and didn't really love it although I've always been ok with and liked taking care of comfort care patients. Hospice is something I've considered for somewhere down the road if or when I decide I'm done with floor nursing. Something about helping patients and families during that time is so rewarding.

    ReplyDelete
  20. I've been reading your blog for a while - but have never commented. I LOVE this post and couldn't agree more.

    ReplyDelete
  21. Dignity in death is an amazing thing - whether it's through the ER or Hospice. Thank you for caring. It's one of the many reasons why I think you're a pretty fabulous nurse.

    ReplyDelete
  22. I have had these feelings so many times in my 18 years in the ER. Your blog is an inspiration to me as a nurse and a blogger. Wonderfully written. Thank you.

    ReplyDelete
  23. We struggle because we are inherently selfish. We don't want to see someone we love disappear from our lives. Seriously.

    When my father died (alzheimers/pneumonia), his 'favorite' son tried extremely hard to wrest him out of the nursing home into a hospital. But the rest of us knew that Dad did not want to be in a world where he could not communicate. Yes, it was still hard. But I am at peace knowing that he is not bound to a chair or bed and not even able to say he needs a diaper change. Strange as it sounds, his death was beautiful. We were all around his bed reciting the rosary (he was very religious) and on the last "amen" he stopped breathing and was gone.

    Interestingly, the early-to-mid changes of his decline were quite wonderful sometimes. Things would pop out of his head that I never knew about and he was, for the most part, peaceful and smiling. That is not always the case. We were lucky.

    You are a joy to read. Keep it up.

    ReplyDelete
  24. Hospice is a really great thing - maybe you should give it a try!

    ReplyDelete
  25. Hood Nurse - I too am dealing with ER-burnout and as such am moving to a different floor of the hospital shortly. I too desire something with more of an emotional component (and less BS). I am so excited about the new possibilities! From the sound of this post, you would make a fantastic hospice nurse, and heaven-knows we could always use great ones.

    ReplyDelete
  26. I know how you feel Hood Nurse. I deal with the same thing all the time...except in pediatrics. What I also don't understand is, if you believe that God is the all-powerful being that He says He is, you don't need to "give time for the miracle to happen" or whatever. Do you really think that God has your loved one penciled in for a miracle, but then you decide to withdraw support and He's like "Well damn those people ruined my plans!". Of course not! If God is going to perform a miracle, He's just as capable of doing it when you withdraw as he would be to do it a month or a year from now.

    I've seen both situations: "good" deaths and "bad" deaths. The bad deaths...where the family is fighting until the bitter end and the death is often an ugly code situation with a lot of fear and anger in the room...are so awful. But there is such a thing as a good, even beautiful, death. Those families recognize that suffering, not death, is the enemy. And as the nurse you get to give them the opportunity to let their loved one go with dignity: bathe them, get rid of all the scary medical equipment, try to make them look as much like themselves as possible, and keep them comfortable while their family gets to hold them and love them. It makes me cry just thinking about it, but sometimes doing nothing is the most beautiful gift you can give your patient and their family.

    ReplyDelete
  27. Also Hood Nurse, I think you can be a great ministry to hospice-type thinking in the ER. Part of the reason I think families can't let go is because of the medical community they've been exposed to being very inclined to curative instead of palliative care. Every doctor and nurse these families have ever encountered are usually curative care based: you have a brain injury and can't breathe, we can fix that with a trach. You can't absorb your own CSF, we can VP shunt that. You can't swallow safely, we can put in a G-tube. A lot of times it's presented as "Here's the problem and here is how you fix it", and the notion of not fixing it isn't even presented as an alternative. And nowadays with the advent of technologies like ECMO, we can quite literally keep a dead person alive for a good while. Then they find themselves in an ER in a crisis situation and are faced with the death of their loved one, so you can see why they wouldn't choose to do nothing: because "nothing" has never been an option that's been really discussed before.

    You can do a lot of good by just being there for families in the ER and presenting ALL the options, including the option of doing nothing. And not only that, but presenting it as an acceptable option that would be met with no judgement whatsoever. It's sad that so many doctors are uncomfortable with having that conversation. We should be comfortable talking about death with families, presenting withdrawal or withholding of life support as a viable option, and even recommending such a route. It's not just about hospice, but about palliative care in general. I can't wait until more openness to palliative care exists throughout medicine, not just in hospice units, so that people are familiar with it before they're faced with a life-or-death situation.

    ReplyDelete
  28. Thanks for this post. I'm a current nursing student and feel pulled towards hospice care already. My friends think that I am crazy but I feel the need and calling to be there to help give comfort to patients and their families during one of the most difficult times.

    ReplyDelete
  29. I want my death to be as dignified and peaceful as my fathers was. He went very quickly from brain cancer. At christmas it was just a sinus infection that was deep seated, in January he had eye problems, Feb he saw the opthalmologist who sent him to ER. He was thought to have had a brain bleed by the look of the scan but when they recanned it was bigger, The operated in mid march and his brain was mush. We sat down and asked the consultant how long and should we be making preparations for his funeral. he was quite taken aback by our forthright attitude and said maybe four months with chemo/radiation etc.
    My dad refused the treatment as 4 months in treatment didnt do much for him, hed rather do things his way. We spent the next 3 months doing all the things like wills, funeral songs, sorting out his finances and having the best family time possible.
    As he became too ill and pained to stay at home he went into our local gp ward which meant no travelling. His pain was controlled, they had the specialist lifting equipment when he could no longer manage himself. The hospice space came available and the nusing team wished him well and it was not a sad occasion,even though they all knew it was his last stop.
    The hospice was an amazing place, not sad, pets allowed in and children. Family given beds to stay in or a chair in the day room for the snatched sleep you tend to get in the situation. Meals were served to us even though Dad couldnt eat. His pump drivers were small and discreet under his pillow. When things got a bit smelly,(normal apparently) they had pottery oil burners. We sat and laughed our way through his favourite tv programme Top Gear whilst he slipped into unconsiousness. In the morning we said our good byes with his dogs at his feet on the bed.
    The staff were wonderfull not quite 3 days, but the most relaxing point of a horrifying few months. The staff were like having another mother, best friend, strange because you didnt know them, but you trusted them implicitly.
    Many times i have wondered when reading this blogg what these families will feel when they remember thier loved one.
    S.B. (uk)

    ReplyDelete
  30. I hear you. It sickens me that we're nicer to out pets than we are to our families. We want to do the "humane" thing for Fido and put him out of his misery, but it's perfectly acceptable to allow Grandma fester and die in a nursing home and get bounced back and forth to the ER septic from UTIs time after time after time after time. No, please, ER Doctors and Nurses, break her sternum and shove a tube down her throat in an effort to keep her alive for as long as possible.

    *smh*

    I think you'd be an excellent hospice nurse :)

    ReplyDelete
  31. I took care of a patient that had been on hospice for 9 months. She came into the ER via ambulance because she had been vomiting up her pain medication and her hospice nurse couldn't get to her home for several hours. Once I understood that the patient was simply there for pain management, I stopped trying to "fix" everything. In my 11 years of nursing, it was the MOST poignant and career changing patient I'd ever cared for. In my experience, the patients that died in the ER were nearly catatonic or already mostly dead from whatever happened before they got there. This patient was awake, alert, pleasant, fully with it. She had come with her sister, who was also her POA. After a while, the patient asked her nieces and brother in law to go home. Her sister asked me to stay with her and the patient while I treated her pain. The sister had said that they were ready for this time because they had had so long to talk about the end. I believe that the patient knew this was her last night. She died peacefully and pain free after a few doses of dilaudid. It was my favorite shift as a nurse. To be part of something greater- to see life end without out seeing futile attempts to hold on to a failed body- was one of the greatest gifts. It was about 10 months later that I left the ER and went to outpatient Chemotherapy treatement. Talk about an awesome place. I thought it was going to be sad and depressing. there are some sad moments, but that place is filled with much more hope and love (and behavioral expectations) than any other place I've worked as a nurse.

    ReplyDelete
  32. I like to think of the Hospice nurse as the End-Of-Life-Midwife.

    I spent a lot of years bringing babies into this world, and they weren't always alive, sad to say....so it seemed that someone had to "deal with" the parent's trauma in the loss of their child, and usually that person was me because it is something that a lot of nurses don't feel comfortable with.

    It all seems so natural and a part of living. I wish people would accept that a little more readily.

    Dying - it's the last thing we do on earth....might as well make it easier.

    ReplyDelete
  33. When my mother died we had a Hospice nurse coming to the house since we didn't have a facility where I live. I moved my mom in with me in the end and she was able to die peacefully in her sleep with me & my sister laying with her. It was the saddest thing, but afterwards my sister & I just sat there with her waiting for the nurse and the funeral home to come just talking about our time with her & painting her nails for her. Hospice is a wonderful thing period.

    ReplyDelete
  34. Amen, sister! Awesome post.

    ReplyDelete
  35. Ally wrote: "..suffering, not death, is the enemy."

    Beautiful comment on a great post.

    ReplyDelete
  36. We need hospice nurses in every department of the hospital.
    Consider becoming hospice certified and taking this knowledge to where you are working now. We need you!

    ReplyDelete