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

In response to Altra's comment:

I wear both the hat of a nurse, and that of a client. And as both, my comments indeed relate to nursing. I am not new to this.

He was in a medically induced coma (would you rather I use different language here?) to stop his seizures that occurred after his surgery. For reasons of brevity, I did not go into all the details, but suffice it to say this- he was in a 'medically-induced coma' for a few days. Then, they turned off the propofol. When he did not wake up at the rate that his nurses felt he 'should be waking up', he was written off. My dad does not react normally to medication. He had his specialists stumped. As I mentioned, very few of his nurses did their homework. Very few of them bothered to find out that he had been given a whopping dose of phenobarbital. In fact, one of the nurses told us he was non-responsive, his pupils were blown and we should just come and say our goodbyes. Others told us that people walk around every day on phenobarb and that nothing justified his condition. That is NOT a nurses role, no matter what. It got so bad that the neurologist actually put in the doctor's orders that no-one was to make diagnostic or prognostic comments to us at any time. It felt like we were being attacked with every shift change, I kid you not.

It is insulting to me that you twisted my words into 'interventions mean nothing to me'. That is not what I said. I said the nurses 'efficiency' meant nothing to me, because it was not accompanied by any semblance of humanity. I am also offended that you would say that in a month of this encounter with critical care, all I am asking for from my dad's nurses is advocation. You cannot simplify what I have said here to mean that. What I am saying is that through this journey it is what we needed the most. It's all fine and good to be efficient, but what tends to be forgotten in these long, intense situations is the 'art' of nursing. I cannot count how many times nurses would walk into the room and perform a task without speaking to us or to my father.

I am not a fool. I know that my dad was (and still might be) on the brink of death, and I have made my peace with that. Had anyone actually opened up the conversation in a kind and sensitive way I would have been willing to go there. It never came to that. His neurologist was optimistic the entire way through, and asked us to stay the course and that is what we did. We should be supported in that, regardless of our nurses opinions. Furthermore, opening up that conversation in ways such as 'the doctor ordered another EEG. Seems like overkill to me', and 'you know he's not going to survive this, right?' is not the right way, as you say so succinctly, to 'open up discussion on whether or not the plan of care and the prognosis driving it need to be altered'.

thanks for your well-wishes.

Esme12

I am just so very sorry to read your story. Breaks my heart. He sounds like he was a wonderful man. I am sure you miss him all the time. I am also sure he is with you everywhere you go.

Peace to you and yours.

Anna

Specializes in ICU.

A lot. I work on a rapid response team and one of our jobs is "watching" the ICU transfers....theres many times where they are clearly sent out wayyy to early. Luckily we are following them so we can help advocate if they need to go back before it turns into a true emergency. But yes there are many people who fall through the crack unfortunately

Specializes in Certified Med/Surg tele, and other stuff.
I am sorry you are going through this and my prayers for you dad's full recovery. I experienced this with my dad although my outcome was not a good one.

My Dad was 80. A work horse all his life. He had rheumatic fever when he was young and had subsequent heart damage. He had a valve repair and CABG at age 70 finally for his valves and re mapping of his coronaries. He did well......for having a bad heart. My dad finally retired at age 75 because he was forced he continued to Walk at least 3 miles a day. IN November of 2008 he started experiencing renal insufficiency fro longstanding heart/HTN issues. He began experiencing confusion. He fell in February on 2009 and was hospitalized for urinary infection.

His care was poor. If I heard that we needed to recognize that my father was 80 I was going to hurt someone. I Flew in to find my dad face first in his lunch tray with a glucose of 40.....with his footies on his bedside tray/stand and dry skin all over the top, gait belt cinched around his waist. My father was a work horse and if you asked him how he was he would tell you fine even if he was holding his severed limb. His renal function deteriorated his confusion increased....his LOC decreased. I will never forget the day the dialysis tech was talking to me at the bedside and made some comment about if they had to be on dialysis they would rather be dead and that they wouldn't wish these treatment on their worse enemy. What the????? I found him with OR monitor patches after "his best bath ever" and still covered in betadine made me mad. That his IV srsg wasn't changed for several days until I complained frustrated and disappointed me.

Dialysis worked he cleared wlaked around his room unassisted One day he was due treatment. The tech couldn't get the cap off the VAC cath she took two hemostats and torqued the cap.....fracturing the hub, making it now unusable. I was assured he'd be fine. He was 80 and it was the weekend...the cath could wait til Monday. His labs weren't that bad. Besides he is 80. My Dad was fine, he was a member of mensa. He walked 2 miles just days prior to admission.

My Dad coded that night.......we removed him from life support the next day. I miss him everyday.

This broke my heart. :crying2:

I have been an ICU nurse for about a year, and I hear where you're coming from. As a brand-spanking new ICU nurse, my estimation of patient condition was almost exclusively over-optimistic. At some point, I started swinging the other way: seeing patients that seemed "hopeless" and "tsk-tsk-ing" (silently) when families made decisions to continue care that I did not agree with. Much of what I am about to share is my internal process, and not a visible one, as I strive to treat all patients and family as I would want my family to be treated. Now, a year into this, I know more than ever that I am not in control.

I have had patients tell me "I am going to die tonight," and after reassuring them that their vitals are fine and nothing has changed (I know, a rookie mistake)...they die later that night. I have also had patients who are minimally responsive whose families choose to trach and PEG, much to my consternation...but then I walk in the room a week later, and they stick their tongue out and wink at me. Who am I to say what will happen? Who am I to declare that a patient has no more worth to offer? Who am I to put a timeline on how quickly a family must grasp the ungraspable? The answer is...nobody. I am not in the position to play God, decision-maker, or family member. I must support those who have to make hard decisions.

I am there to support the patient (and in the event that the patient cannot make decisions, the family). I often will not understand the family's point-of-view, but that is because theirs is a process of the heart, not of the head. I do my best to be honest and kind, without instilling hope or doubt that is not there. Every day I try to be better.

Best wishes for health and happiness to you and your family.

Altra, if you had read her posts, I believe she is aware of what a medically induced coma is, and she mentioned many more things that she has taken away from her encounters. And what's with the snide "Wishing your dad a recovery that meets his expectations."? Really?

OP you shouldn't have even graced Altra's post with a response and neither should I, except that it made my ears burn and I snapped a response! It's amazing what people will say online that they wouldn't DARE to say in public lest they be tossed from the nearest window.

OP that was an amazing story and I took to heart the things that you said that I may remember them when I become a nurse. There are so many eloquent things I would love to say but my brain is so tired, this is all I can manage.

Specializes in Cardiothoracic ICU.

Sometimes its hard to perform the art of nursing when you have 2 very sick patients and family members in the room that question everything you do. I hope your dad gets better care but i doubt that the nurses are not giving it their all.

Your comments come from your emotionally distraught heart, and I can appreciate that.

They do not particularly relate to nursing.

Your father's "medically-induced coma", to use a lay term, was continuous sedation ordered for brain rest or some other rationale. Nurses administered that continuous sedation.

I'm sorry that the interventions "mean nothing to you" and that all you've taken away from a month-long up close encounter with critical care was that you only want nurses to "advocate". We do advocate - including sometimes opening up discussion on whether or not the plan of care and the prognosis driving it need to be altered.

Wishing your dad a recovery that meets his expectations.

Wow, seriously? It saddens me that you cannot find the compassion to relate or sympathise and instead take it as an affront to your own practice....

i hear you there. last week, an 'intensivist' who never actually laid eyes on my dad decided he was to be sent to the medical floor and out of the ICU. He had pneumonia at the time, and we had just discovered bilateral blood clots in his legs (he can't be on anti-coagulants because of his bleeding on the brain, so they ended up inserting a 'basket'). I very calmly told her that she would have to roll my dad's bed over my cold dead body. Shortly thereafter the neurologist came and shredded her transfer order, as he did not yet feel my dad was suitable for a general medical floor. It left me wondering how many patients fall through these cracks??

Many, and nurses are almost always powerless to stop transfers from ICU to the floor even when we know better. That is another thing that contributes to burn out. I have seen many nurses both staff and managers/supervisors fight to get a pt out of med surg floor to ICU or even step down and no one cares what we think. Occasionally they do when it is pretty obvious/mega mega mega obvious or if it is a first year resident, they usually are very willing to transfer pts for the most part. Hope your dad continues to improve!!!!!!!!!

Specializes in OR scrub/circulator, hospice crisis care.

One of the most important things we nurses should keep in mind, with every patient, every day, is this:

"What if this were my family member- how would I feel right now?"

If we use our empathy and put ourselves in their place, we can always provide the appropriate therapeutic communication relative to the situation. I deal with death and dying every day- from the young to elderly, from the prepared to the completely-unsuspecting. It costs nothing to be kind, no matter how busy or burned out a nurse is. I've seen so many nurses "toughened" by critical care and it makes me sad- we are all fundamentally driven by a need to care for our patients, and the institutions in which we work suck it out of us. Don't let it happen to you!

Love to you and your dad, alaur74- don't stop fighting.

Specializes in Trauma, ER, ICU, CCU, PACU, GI, Cardiology, OR.

i'm sincerely sorry that you and a member of your family had to go through such ordeal. my heart goes out to your father and the rest of your family, as i pray in behalf of you father's complete recovery, i also would like to commend you for going that extra mile in not giving up and seeing through that he received the adequate medical attention... aloha~