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

What I was getting at is that I don't think it is a nurses' role to be the first to introduce an idea with respect to diagnosis or prognosis. For example, I recall one nurse saying to us 'the doc ordered an EEG to see if your dad is still even in there'. We were taken aback at this, as no-one had used language like that with respect to my dad's state up until that insensitive remark was made. It was out of the blue and my dad's doctors had not even said anything to that effect at that point.

Having said that, I agree with you that we are there to make sure our patients and their families have the information they need. I know education is a big part of our job. I forgot to mention that in that post. This is a great way to connect and provide comfort to people when they are navigating strange and scary waters.

you make some excellent points Ayvah. I would love to have a nurse like you at my father's side.

Also, nascar nurse- you are so right. I am so thankful for this thread. I am so happy and have learned so much from the different perspectives shared on here. We don't all have to agree on everything, but I am happy to see that the desire to provide great care of our patients is the commonality we all share. I have tremendous respect for all of you, for what you do every day.

grntea- your post touched my heart and brought tears to my eyes. what an incredible love you have.

papers are all in order long since, never fear. thank you for providing the reminder to others.

we are a very lucky couple, and we know it. second marriage, 24 years now.

i think one of the best lines regarding loss is, "don't mourn because it's gone. smile because you had it."

Specializes in Nurse Scientist-Research.

Alaur74, let me start by saying almost all the quotes you have given from nurses in this ICU sound extremely inappropriate. Their manner of communicating needs severe help. Many of the thoughts they are communicating need to be kept to themselves.

I'll further add that in my work in the neonatal ICU I try to continually remind myself that the families are under extreme stress (particularly the mothers with postpartum hormones and the recent likely traumatic birth).

Next let me add, that my patient primarily is the the one lying in the bed. 1st and foremost. Family is important, but they are not my first priority. Many do not understand this. I am the infant's advocate first, family second. Do I think the nurses you have discussed are advocates for your father? It doesn't sound like it from the quotes you have given (mostly). Several of your comments have alluded that the nurses are not advocating because they are not advocating for you and your mother. I know this is a fine distinction. But it's this distinction that will lead me at times to discuss long-term prognosis with a family. In very safe & couched ways (that I could back with research if push came to shove) I may discuss the expected prognosis and sometimes it's not a pretty picture, and is this what they want for their child? With an infant, it's not really appropriate to ask what they would want, it's the expected parental role to assume that decision. Sometimes, advocating for my patient means discussing things that make the family unhappy, i. e. not "advocating" for the rest of the family.

I have a difference of opinion with you about the scope of what nurses discuss with families. I will not purport to know the intricacies of the nurse practice act, you are probably more current on it than I am. I will chalk up the differences of practice as likely being due to different areas of practice and perhaps the culture of my particular unit. In my unit, it is expected that nurses will continually update and explain the diagnoses, prognoses, plan of care and all that with the families. This is given our most common diagnoses such as prematurity, RDS, common birth defects. If it's anything unusual, we definitely defer to the neo or specialist. One of the nice things about NICU is that we usually deal in a much narrower range of problems.

One more point; I think others have commented on it before; when you mentioned that it wasn't the job of a nurse to take hope away from you. No, it's not. The quotes you gave regarding that were inappropriate.

Let me end by saying that it sounds like you truly have been an advocate for your father, and I am very happy to hear he is recovering and will likely be ever thankful for your intense support during this difficult time for him.

I want to give you the last word. You pointed out the most important aspect of this whole thread which overrides any aspects of who is the patient, who is the priority or anything else. . .

Treat them with respect.

Specializes in Critical Care, ED, Cath lab, CTPAC,Trauma.
I've read this whole thread and I have learned a lot. I hope your father the best.

An issue related to this topic but not yet discussed in this thread is to follow the patient's wishes, which sometimes gets difficult when the wishes aren't in writing and you have different family members advocating for different things (traching a patient vs removing life support for example).

As a student/tech I try to keep myself open to learning opportunities and I appreciate you enlightening me with your point of view, I hope it will help me provide better care one day.

I think everybody on this forum could give antidotes about similar to this and others could argue back with other antidotes.

The one thing that bugs me a little about end of life care is that sometimes in the ICU we can't let the family visit as much as they would like. It makes me sad because I would of liked to stay with my dad more when he was passing away (63 y.o.). Eventually we he was taken off of life support made a DNR and put in a private med/surg room where we could stay with him. He lived for half a day, but was never really lucid.

But I also understand why that particular ICU had their particular visiting policies, because that's where I work.

That is the challenge of ICU. There is a fine line between family advocacy and participation versus intrusion and safety of the patient.

But even when there is a living will or advanced directives not all states recognize them. The best route is the appointment of a healthcare proxy/power of atgtorney....a trusted indivudual that can abide by your wishes in the event you can't say it for yourself....and it is legally binding.