My dad was a 'throw-away'

People do what they need to do at any given moment and it is up to us to be advocates for them. I know there are those who will say 'save those feelings for when you are in the nurses' station, or in the staff room'. I would challenge that. I would say, suspend those feelings entirely until it becomes a part of you. Stop them in their tracks. Nurses Announcements Archive Article

I have just graduated from an RN program. A month before my grad, my dad needed emergency brain surgery for an injury he sustained at work. Due to a series of complications, what should have been a relatively easy surgery turned into him being put into a medically induced coma. It has been over a month now, and he is slowly coming back to us, after weeks on end of non-responsiveness.

All the while, there have been great nurses, and there have been not-so-great nurses. I have learned such valuable things from both kinds. Sure, they are all terrifically 'efficient'. That means nothing to me, actually. We have had amazing care and consideration from a handful of them. Sadly, more often, we have also had thoughtless and hurtful things said to us, in front of us, and within earshot of us, unbeknownst to them. There have been things said in the presence of my father who was in a deep coma that I am sure he heard, because now that he is somewhat lucid, he nods 'yes' when I ask him certain things to see if he remembers anything from when he was 'out'. My father has been treated as a 'throw-away' patient in the ICU because he is 72 and has a brain injury. A few of his nurses never even bothered to get the back-story and did not know that he worked for a month with a chronic subdural bleed after his original concussion, that he is ridiculously healthy and active and strong in real life. That he beat terminal cancer 24 years ago when told he had 3 months to live and is tough as nails and has an incredible will to live. That he was put into a coma by his neurologist, he didn't go into a coma because of his injury. They treated him (and us) like he was a hopeless case, a vegetable. We were actually told by one nurse that his treatment was a waste of time when his neurologist ordered an EEG. Why? How hard is it to just do an EEG without sharing your opinion on whether or not you think it is necessary?

The biggest thing I have learned is that it is not up to us to cast judgment on a family's choices for their loved ones. It is not up to us to share our opinion or use diagnostic or prognostic language. Our job is to support patients and their families wherever they are at, nothing more than that. The grief, the reality, the anguish and doom, and gloom will take care of itself, trust me. We don't need to add to it. I know nursing is hard physically and emotionally. I know nurses get 'burn-out' and are privy to emotionally intense situations that might 'numb' us, or cause us to jump to conclusions in other situations. But acknowledging this is not good enough. It's not ok, regardless of the reasons.

I will never again judge anyone for not signing a DNR. I will never again judge anyone for any decision they make at any time. People do what they need to do at any given moment and it is up to us to be advocates for them. I know there are those who will say 'save those feelings for when you are in the nurses' station, or in the staff room'. I would challenge that. I would say, suspend those feelings entirely until it becomes a part of you. Stop them in their tracks. Do not attach judgment. Just be the support that the family needs.

I went to my graduation this past week and cried as I crossed the stage because my dad should have been there to see me. I also felt guilty for being there because I was not sure he was getting the care he needed while I was 4h away. I did not trust his nurses to care for him without me there advocating. It occurred to me again and again that this should never be the case. Nurses should ALWAYS be our advocates. I have not felt that yet during this experience. I have told the nurse-manager of the ICU this. I shudder to think of the patients whose families do not know enough to advocate for their loved ones.

And my dad? He is slowly making a recovery, is awake and is starting to move his body, his arms, and legs. His eyes open, and when his trach was plugged he spoke his first words to my mother in over a month- she told him she couldn't wait to get him home to his own bed. His response? 'What are we waiting for?' followed by a chuckle. He moves his arms and legs and tries to sit up. I asked him if he was doing this because he was uncomfortable. He said no. Through a series of yes and no questions (he can nod 'yes' and 'no'), we deduced that he is, in fact, doing his 'exercises'. He wants to get out of his bed, and he will. He affirms he is bored and wants to catch up on 'Mad Men'. He does math problems in his mind to stimulate his brain (my dad is a genius and can solve ridiculously complicated calculus problems in his head for 'fun'). The floor is abuzz with the news of my dad's awakening. He is surprising everyone.

All of this from a man who we were told would not survive, and his life was not worth the effort we were making.

As nurses, this is not up to us to decide, and it most certainly should not have an impact on the care we provide.

Anna L

BScN, RN

Specializes in Hospice.

Yes, her comments do relate to nursing. Yes, her emotions are playing a factor but professionally she hit the nail on the head. She was not "bashing" the sedation as I believe she understood its purpose very well however being a hospice nurse, I KNOW how other nurses have a great tendency to make comments or even worse make "their" diagnosis right in front of a patient and sometimes within earshot of the families. Did they learn that the hearing is the last sense we loose? Did they forget compassion?? There are to many nurses who work as if they are on an assembly line they forget the patient. Families do not understand care plans or the need to alter it unless someone sits down and explains them.

I must admit I was a bit taken aback when a previous poster said my comments do not relate to nursing. Then I realized that this person is one of the kind of the nurses I am talking about and taking issue with. That being said, I am also very thankful for this poster's comments. Everyone has something valuable to teach. I consider this as a sound lesson in how not to be, something I will carry with me for the rest of my career. If I find myself feeling callous like that, I will leave my profession and just stay home in my garden where I can't hurt anyone but myself lol. Thank you so much everyone for your insights and compassion. It gives me hope.

I think where Altra (and obviously a few others as her post has quite a few likes) may have taken offense is this:

"Sure, they are all terrifically 'efficient'. That means nothing to me, actually."

Your father wouldn't have woken up and would likely be DEAD without that "efficient" care.

I hope your dad continues to have a good recovery.

I think where Altra (and obviously a few others as her post has quite a few likes) may have taken offense is this:

"Sure, they are all terrifically 'efficient'. That means nothing to me, actually."

Your father wouldn't have woken up and would likely be DEAD without that "efficient" care.

I hope your dad continues to have a good recovery.

I hear what you are saying. It was not meant to be offensive. What I am saying is that we are not doing our jobs in their entirety if we are merely being 'efficient'. Nursing is a science and an art, and we would do well to remember that. In difficult times, patients and their families need more than that from us. Nursing as 'the art of caring' is an equally important part of our work, as evidenced by 99% of the responses in this thread.

alaur, congrats to your dad and his ongoing recovery.

the will to live is always a powerful motivator.

i also agree about advocating for pts and families...

IF pt and family wishes are compatible.

as a longtime hospice nurse, i've known many pts who wanted to die, yet families still wanted everything done possible.

it's at times like this that my priority is for the pt, and i try and educate family to extent possible.

i do have a question.

you note that the nurses were "terrifically efficient", yet later note you didn't/don't feel he is being aptly cared for, without you there.

if you feel all the nurses are efficient, why wouldn't dad be cared for *efficiently*?

leslie

eta: i'm not sure i would begrude those nurses who didn't know your dad had fought cancer and won, 24 yrs prior.

not all of us truly have time to read through charts.

it's wonderful when we can. :)

but more often than not, we get the bare necessities and if ca was part of his pmh, then yes we'd be aware.

but the narrative section (from licsw) wouldn't be part of our priority.

Hey Leslie

The nurses in his ICU are indeed amazing at the technical aspect of their jobs (some have been incredible in every way, don't get me wrong. But more often they have been sorely lacking in relational skills- and who needs that more than the families in an ICU?). They come in, do what they need to do, and they do it well. However, as I have said in previous posts, the humanity and the kindness was rarely ever there. My mother was often ignored as she sat at his bedside. Callous remarks were made in the presence of my father and my mother, which do nothing to help the situation other than to serve to get something off the nurses' chest, so therefore had no place in his treatment. I was never adverse to having 'that' conversation about my dad and his prognosis. But making rude and hurtful comments is hardly the way to open that door. Because of these comments and this general attitude, I did not want to leave my parents' side. Imagine my poor little 70 year old mother who has had no sleep, is keeping constant vigil at her husband's bedside, being told another EEG 'seems like overkill' by one nurse, and 'you know he won't survive this, right?' by another. Isn't a big part of our job knowing how and when to broach these difficult subjects? That is hardly the way- I mean, I learned that in first year. In light of this, OF COURSE I didn't want to leave them for a minute.

Incidentally, a great take-home lesson for me was this: upon meeting my unconscious father for the first time, his neurologist approached me and said 'Hi. I'm the neurologist, Dr ***. I am going to care for your father.... Tell me what he is like. I want to know who he is'. What a difference that made to us, his family. No-one up until this point had said anything of the sort. This is a tool I intend to put in my toolkit. I cannot tell you how it made us feel, knowing that my dad's caregiver cared enough to know who he is.

Anyway, I have said this all before in different words, and I feel a bit like an annoying broken record.

Thanks for your kind words.

update- my sister called me this morning to tell me they have dad up at bedside, have downsized his trach, and he told her he wants to get home because he has a lot of work to do around the house to get ready for Spring. Of course, coming off the phenobarbital, he is also swatting at 'big black spiders', but hey, we'll take it. :)

Specializes in Critical Care, Emergency Medicine, Flight.

im sorry you had to experience this. its a bit crushing to listen to that crap esp. as new grad in hopes that the nursing profession will be one of integrity until u see the care (on that unit) is given to your family member. I hope he is doing better.

hearing is the last sense to go...so i am ALWAYS mindful of things i say around my patients even if they are completely lucid or in your dads case a very deep coma.

stay strong!

i do hope those nurses who were crass, unprofessional, and out of line...were reported.

if so, i'd be shocked to learn that they or any other nurse, would say anything remotely similar...

especially where dad is doing amazingly well now.

there wouldn't be any need for anyone to propose something so dismally insensitive.

i take it you're a new nurse?

i'll give you the heads up now...not all nurses acknowledge the "art" of nursing.

the true professionals do (acknowledge) it, but sadly, not all...not even nearly all.

another thing i'll share with you.

for years i was difficult to work with, because i was quite vocal when other nurses didn't live up to my standards of care.

and while it was never my intention, i came across as condescending, self-righteous and plain arrogant.

truthfully and to this day, i didn't and still don't care that i ruffled other feathers.

i was still a great team player and did anything i could to help others out.

i tell you all this because i read about new grads who enter the workforce and *gasp*...

some of these nurses aren't anything i envisioned.

well, unless a pt is at significant risk of being harmed, keep your (superior) standards to yourself.;)

be your personal and professional best, leave the rest alone.

you can't change anyone but yourself.

best of everything to you and yours.

it sounds like everything is going to be just wonderful.

leslie

I hear you Leslie, lol.

I find that often I'll ask myself 'is this a hill worth dying on?'. If so, I'll say something, otherwise I'll keep things to myself. I also like to go directly to the source rather than ***** and whine to other nurses, if I do decide to say anything.

I appreciate that our system keeps us down, and so many of us started out with such grand visions and slowly over time that gets beaten down due to stress, difficult emotions, workload etc. I really do get that. I am also aware that some nurses are really only interested in the technical aspects of their jobs. I have a few of those in my graduating class.

I suppose in this case, as a family member, I feel able to be a bit more of a 'squeaky wheel' because I am advocating for my dad's well-being. I am not trying to make friends, or apply for a job. I don't have that concern about making my life hell in my workplace. I demand that my family (and every other family) is treated with respect and if I have to be one of 'those' family members, I am happy to do it. In my professional life, I have learned in the last few years of working on the floors that the best thing I can do is lead by example, and not get caught up in any negativity on the floor.

In the end, this is all good stuff. Incredible learning for me, and lots of grist for the mill.

:nurse:

Specializes in school nursing, ortho, trauma.
Flare,

Nurses are human beings as well, it is never satisfying to code a 93yr old-even if they are healthy. It is reasonable to discuss these things with families and often times I don't think that people really understand what "do everything" means. Truth be told most nurses outside of the ICU rarely understand the nature of what is done to these patients. Lines and tubes in every possible place....poking, proding, shocking, chest compressions. It is not a matter of not wanting to be busy........it really is a matter of compassion and there is an element of frustration, why are we so fixated on keeping people alive?

Oh, i get that, mcleanl. I agree that nurses can be the vehicle to educate families and patients about what "do everything" means. But what i notice that happens is that ometimes the personal feelings of the nurse can take over. I don't think it's intentional or malicious, but the idea of "this should be a DNR patient" or "why are we bothering with this procedure" takes over and the concenrs, while may be for the best of the patient get relayed ad ambivalence by patient and family. I strongly suspect this could have been what the OP was sometimes experiencing.

Yes, it's heartbreaking and frustrating to be in a situation like this. From both the nurse and the family's sides. I've been there for both. And I know that most nurses that make comments like those made to the OP either speak out of frustration or concern.

Te bottom lime is that agree with the family's decision or not, all we can really do is gently guide and hope the right decision is made. But we can never rob a person of tehir sense of hope. Sometimes it is all they have left.

It does take a big toll on health care staff. I believe it is one of the primary reasons for nurse burnout and the endless rotation of staff in some areas, esp trauma ers or icus. Have had many patients say they wish their family memebers had let them die or "why are you doing this, let me die!!!!!" How can nurses be more supportive of family's decisions? What is felt is not always what is. I never give my opinion to or near the family on care, comfort care, treatment prognosis EVER, even when asked.sounds terrible but I do not want to be seen as the unsupportive nurse or nurse that told us quality vs quantity or the realities of some treatments...... Would never say, "another EEG, overkill!" If they want to talk about choices, prognosis, treatment plans I page the doctor and sometimes he/she does not want to handle it either. It can go either way. I would want to be told the complete reality of prognosis from the drs. I have seen a few turnarounds that the both nursing and drs did not excpect but usually that does not happen. I sence that there was a strong disconnect between what the nursing staff was telling the OP based on what the medical staff was telling the op? is that the case?

this is good food for thought, anotherone. I think you can be supportive of a family's decision just by 'being'. Keep judgement and opinion out of the equation entirely. Treat them with respect. For example, in our case, it would have been great for the nurse to just say 'The doctor has ordered another EEG for this morning, and I am sure he will discuss this with you after'. Ask about the family member. You can build that relationship just by saying simple things such as 'this must be so difficult for you.' 'Is there anything you need?' or how about just 'how long have you been married?' 'how did you meet?'. Anything, ANYTHING to just be in solidarity with those that are suffering at bedside. It's not rocket-science. It's just plain humanity. If what is felt by the family is not congruent with the reality of what is happening, then suggest a meeting with the doctor. I agree with you- it is up to the doc to discuss dx and prognosis, this is not our role. Our role involves carrying out our tasks, assessing, monitoring, acting and reporting, and providing comfort to our patients and their families. It does not involve throwing our opinions and beliefs into the mix. We have no right to do this. Even if a family member asked me what I thought, I would offer something along the lines of 'It's not something I feel I can comment on. But it sounds to me like you are having some concerns about (treatment/diagnosis/prognosis etc.) so let me arrange a doctor's visit. Would that be ok?'. Support and advocacy. It's pretty easy, especially if it comes from the heart.

In an earlier post I mentioned that we had one nurse who told us that my dad was non-responsive and we should come say our goodbyes, as his pupils were blown and they had turned off his propofol hours earlier- therefore he would be awake by now if he was going to wake up. She neglected to see that he had been given 2 grams of phenobarb before she came on that morning. First of all, it wasn't her job to make that diagnosis. Secondly, how do you provide good care if you don't even know what drugs your patient is on? We rushed to the hospital to say our goodbyes and ran into the neurologist shortly after leaving his room. He asked what was going on, and I told him. He was very angry. He said ‘of course he is non-responsive. He has enough phenobarb on board to put this floor to sleep’. When I complained to the nurse supervisor, she said ‘don’t be too hard on the nurse. She just returned from maternity leave’, followed by ‘well, isn’t it so nice that the neurologist is all optimistic and telling you all of these great things. But you’re a nurse, you get where this is probably really going, right? I mean, I don’t want you to have false hope’. The thing is, we were feeling optimistic based on the specialists’ prognosis. So let us have that. It isn’t the job of the nurse to take that away from us. There is nothing anyone can post here that will make me believe any different. Support people where they are and let the docs do the rest. That's it. If you want to go beyond that in your practice, then you need to engage in a little introspection and examine your motives.

ok, I've said my piece. I really appreciate all the different perspectives, insight and kindness. It is invaluable learning for me.