Bearer of Bad News
Posted by realityrounds on July 14, 2009
I took care of Baby Colin* as his primary nurse for three months. He was born almost 3 months early, and had a relatively stable Neonatal Intensive Care Unit (NICU) course. Stable for the staff anyway. We tend to not blink an eye at intubations, central lines, respiratory treatments, blood draws, heart surgeries, etc. Just a day in the life. It is not just a day in the life for a parent however. As a rule of thumb, we often tell parents of extremely premature infants, that their baby will most likely stay in the hospital until their actual due date. So for Colin, he would most likely be hospitalized for three months. Just like clock work, he was ready to be discharged at about three months post birth.
I talked to Colin’s parents almost every day I worked. They were truly lovely people. The perfect parent’s to a nurse. Did not complain. Were grateful to the staff. Not demanding. Patient and respectful. They visited Colin every day, and had weathered the roller coaster of a ride it is to have a baby in the NICU. Now, Colin was nearing discharge. He was taking all his feeds from a bottle, was off oxygen, in an open crib, and free from any apnea (spells of not breathing) and bradycardia (low heart rate). A few days before his actual discharge Colin had a routine head ultrasound to make sure his developement was on track and he had no subtle brain hemorrhages. I received the ultrasound report during my night shift. It was devastating. Colin had periventricular leukomalacia (PVL) a conditon in which brain tissue dies, and “holes” develop like swiss cheese in the remaining functioning tissue. PVL can lead to severe developmental delays, spastic quadriplegia and cerebral palsy. Colin’s ultrasound showed severe, devastating PVL.
The phone rings, and Colin’s mom is on the other end. “How was Colin’s night? Did he gain weight? What did his head ultrasound show?”
I was silent, silent on the other end. I stammered and told Colin’s mom nonsense about what a good night he had, how he gained weight, etc. I knew damn well what the ultrasound report stated, but I said nothing. I told her the results were not back yet. I lied to her. I could not be the one to tell her. Yes, I was an evasive coward.
It left a sinking feeling in my gut. I hate it when nurses are silent with their patients. I thought it is not my duty to tell the mom, it is the doctors. I justified my silence by thinking it is not covered in my liscence to discuss this diagnosis with the mom, especially over the phone. Was I wrong? What would you have told this mom?
Thanks to Grunt Doc for starting the conversation.
*Fictitious/composite story*
RR
pinky said
I don’t think you were wrong. I would not want to get information like that over the phone. Also the Doctor should be the one to give the diagnosis.
That sucks. It makes you wonder why we do this. Then you realise we do this cause it is what we do and we are good at it at this point. I do sympathise with your plight. After caring for a baby that long it is hard not to get attached to the little guy.
midwest woman said
I had this experience with a woman whose lung scan showed a large mass..this came through late on Sunday afternoon so all the docs wouldn’t have their ducks in a row till the following day. Daughter kept inquiring about CT. It felt like I know something you don’t know….actually posted about it. What can you do but keep silent…as much as we may know, we are not liscenced to diagnose. It’s not lying just delaying the inevitable till the proper person can give the information.
realityrounds said
Midwest Woman
Always feel free to link your posts. Knowing something the family does not know is always a horrible feeling.
Julie said
I have to agree with the above commentors.I think you did the right thing…as hard as it was.
Such a sad situation.
M'Lynn said
I would have done the same thing. I would have done it with that sick, sinking feeling in my stomach, but it’s what you do.
In the OR, we do it all of the time. I was trained that when things are bad, to be vague and evasive. I’m practically a politician when it comes to giving information, because things can change very quickly.
Pattie, RN said
Yup, Washingtonian grade political vagueness rules in horrid situtations like this.
Andrea said
In all honesty, I would have done the same as you, in that situation.
In the (adult) ICU, when stuff like this happens, I just tell the pt/family that the report shows some abnormalities, and the MD will be there to discuss the findings. I explain it’s not my scope of practice to interpret and discuss the findings. These situations SUCK.
realityrounds said
It REALLY sucks. I always feel like I am lying to the patient.
Akiko said
You did the right thing. I would not want to be told this diagnosis over the phone. I would want face to face, with the ability to ask questions, to be given choices.
Kathy said
My husband and I watched “You’ve Got Mail” with Meg Ryan and Tom Hanks the other day. You remember how that Hanks’ character repeatedly says, “It’s not business; it’s personal.” Finally, Ryan’s character questions, “Why do people always say that? It was personal *to me*. It seems that whatever else life is, it ought to start by being *personal*.”
You may have done what is legally and medically and ethically right or accepted… but it still somehow seems like a personal wrong. I don’t know that I would have done any different, though. But in some ways, because you were personally attached to the baby, from months of caring for him, that you may have been in a better position to tell the mother the truth. Because it is not just medical to her — it’s personal. Intensely personal.
When my father was killed in a car wreck ten years ago, there was much “passing the buck” among people to finally tell our family. He was a volunteer firefighter in our small town, so when the first responders looked in his wallet to identify him and found his fireman’s card, they contacted the fire department or the mayor; the person they responded talked to somebody else who they thought was closer; he remembered that my mom would frequently go for walks with another woman in town, so he asked her to go with him and be the one to break the news to my mom. Because bad news is personal, even if it’s a medical nature. It sucks being the bearer of bad news, and I don’t know anyone who willingly steps up to do it. But sometimes, the harder it is, the more right or necessary or beneficial it is to do it. And the better it is for someone closer to give the information.
It may not have been your place to give her the news over the phone; it may have even been a breach of trust or overstepping your bounds, since you weren’t the doctor. It would have been devastating to receive such news over the phone, too. It’s hard to know what to have done. Stammering and evading are probably what I would have done, too. But I don’t know that that would have been the right or best course of action. Because it may be that the mom needed that personal (rather than impersonal, clinical, medical, sterilized) touch to better receive the news.
To me, this points to a bigger problem than just this case, and that is the impersonal nature of “proper” medicine. Sometimes I think it’s one of the things that is so wrong with medical care in this country; as well as one of the things that leads to so many medical lawsuits. Perhaps, if we just started off by *being personal*, a lot of other problems would just resolve themselves.
realityrounds said
It was a very difficult situation. I certainly did not want to tell the mom over the phone, but I also wondered how I would have wanted to find out if it was my baby. It is such a complicated diagnosis that explaining it over the phone would not have been helpful. I agree there needs to be more humaneness brought back into medicine. It can be very lonely and impersonal. Patients who have a good relationship with their doctors rarely sue, even in cases of malpractice.
Joy said
I don’t think it is your job to give the news, ESPECIALLY over the phone! So I think you did the right thing. It’s hard to know what to say in the moment but perhaps something you could say in the future is, “The doctor has the ultrasound results and will most likely talk to you about them when you arrive!” as chipper as you can.
Poor little baby!!!
BostonNICU-RN said
I’ve been a NICU nurse for 15 years. That really is the worst, whent they have such a seemingly great course and then something as devastating as PVL. I’m sorry for you and the family.
I agree that you did the right thing, but it must have felt like a cop-out and a deception to the family. I have been in similar situations and always felt that the mother could see through what I was saying and sense that something was wrong. There have been times I’ve spoken with the parent later after the news had been given by the physician and apologized, but explained to them that I didn’t think over the phone was the right way to do things, and that I wanted them to be able to ask all their questions and get a prognosis in person. We as nurses know a lot, but I personally don’t think that I am the best one to talk about statistics and long-term prognoses. I know what I do well and what my limits are and that is for the good of my patient and his or her family.
realityrounds said
Boston NICU RN
Thanks for your comment. When I think about it, there is a lot that a NICU nurse knows about prognosis etc regarding the babies, that we do not tell the parents. I do not have a crystal ball, but I know, statistically, what the long term outcomes for a 24 weeker is. I do not tell the parents what I know, because I want them to have hope. But maybe, this is the wrong approach. I wonder what the parents would want from us?
midwest woman said
“what the parents would want from us” struck me. Different people need different things. You have stoic people, emotional people…people process information in their own unique way. That’s why I’m such an advocate of continuity of care so you get to know the people involved and who they are.It’s in these scenarios that the relationship between caregiver and family is so critical. Holisitc medicine gets a bad rap but there something to be said for treating a person and not just the disease.
Sean said
I’m guilty of the same cowardice. Unfortunately it’s not our place (the Nurse) to give those results (answers) to the family.
I honestly cannot remember why or where I learned it, but it’s been ingrained in me as a nurse, that resutls.. ANY results are to be given and communicated to the family by the physician and not the nurse.
Maybe I’m using it as a crutch?
I still would have done the same thing.
Tough decision.