Job Title??

[ARmickie]

A recent illness and death in our family is one of the reasons I have chose to go into the nursing field. I know what I *want* to do, but I'm not exactly sure what area this would fall into. Here's an example:

When the immediate family was faced w/ doctors, getting updates on patient condition (especially since this was so touch and go all the time), it seemed every time we turned around, the doctors were saying, "we don't know.. we don't have all the information yet...". In those moments when talking to the doctor, I know that all the family really wants to hear is "he'll be okay", and the many questions usually don't come until AFTER the doctor has left. I know that our family would have a ton of questions about possibilities of different things, but all the nurses would say about it was, "you'll have to talk to the doctor when he returns tomorrow".. well, by tomorrow, there was a whole new set of questions, or we were getting other information and just trying to absorb that and nobody ever asked the questions. This left me to come home at night, and log on to the WWW and try my best to find information. And, lo and behold, I did find that information.. and by printing it out, and highlighting the areas in question, we were able to start asking and getting answers to questions. One of these questions was, "How on earth could this person have been misdiagnosed for so long when the s/s should have been so obvious? Of course, to that question, we'll never have the answer.. he's gone. But, by nursing, and researching the illness and finding the information for families that gives them a foundation for their questions, I feel like I can do *something* in his memory.. perhaps if I had felt this way a few years ago, he'd still be here... but I doubt it.. it was his time, and I know this..

Anyway.. can anyone give me any idea of what kind of position this is/would be? As much as I would love the hands on of working w/patients, I would so much also love the ability to be there for the families and give them the information that they so desparately need, but oftentimes are not getting b/c of the fear/shock of being in a critical care area and trying to keep faith that their loved one will be okay...

[purplemania, BSN, RN]

We have an RN whose title is Guest Relations Specialist. She worked on the floor several years before taking this position. You would need to be a nurse to fully understand the nursing perspective. Social workers and psychologists and chaplains also benefit patients and families at this time. In defense of the nurses I will add that the HIPPA regulations have people scared to tell anyone anything. Plus, the threat of litagation prevents open communication.

[Katnip, RN]

Some of the problems with a position like that:

It really is never a wise idea to tell a patient or family member that everything will be just fine. Things happen, people go bad very quickly and the next thing you know, you've broken a promise and the family is in your face saying "but you promised".

If the docs don't have all the information they need, it is neither will a nurse. Doesn't matter if you read the chart from cover to cover, you aren't going to know everything. Nurses can't second guess doctors.

Asking how someone could have missed a diagnosis will never get you an answer. There are many, many diseases and disorders that mimic each other. It takes time, patience, different perspectives from different docs, and sometimes just intuition to get at some diagnoses.

As said above: HIPPA. Healthcare workers are not free to discuss a patient's condition with every family member who asks. Legally it's only supposed to be the POA or next of kin. Period. Our hands are tied there.

If you're looking to be a nurse who has all the answers, I'm sorry but it won't happen. You can't make a diagnosis yourself, you can't give out test results unless pre-approved, you can't undermine a doctor with a family, and you can't make empty promises. You CAN try to be there to support the family and to encourage them to support each other.

[ARmickie]

We have an RN whose title is Guest Relations Specialist. She worked on the floor several years before taking this position. You would need to be a nurse to fully understand the nursing perspective. Social workers and psychologists and chaplains also benefit patients and families at this time. In defense of the nurses I will add that the HIPPA regulations have people scared to tell anyone anything. Plus, the threat of litagation prevents open communication.

I'm waiting for admissions to a nursing program now, as I know that a medical background is definitely required. I felt no animosity towards the nurses at all, none of us did. We completely understood their position. They offerred what information they could, and generally did everything else under the sun to make the family as comfortable as possible. For over a month, my DH's nephew was in CCU and he was referred to as the "sickest person in the hospital"... flesh eating bacteria was found in his intestines, cirrhosis of the liver due to radiation for leukemia in childhood...he was a very sick young man who died at the age of 23. Doctors and nurses alike attended the funeral.. we have the highest respect for them. However, just going thru the whole ordeal is what prompted me to want to do something for the other families who are in that sort of situation.

[ARmickie]

I never said that I was going to tell a family that everything will be alright.. I said "that is what a family wants to hear".. and it IS.. If you have ever had a loved one in critical care, you only want to hear that they'll be okay.. that may or may not be the outcome, but in your heart, that's what you want to hear. A lot of times, as soon as a question comes to mind, something else is said by the doctor and then you are thinking of what he just said instead of your question, and then he's gone.

I'm not talking about sharing information w/ anyone except patient or immediate family.. I'm aware of the legalities. I wouldn't want my information shared w/ everyone in the public either. It's not only illegal, it's just plain wrong.

As far as the missed diagnosis... someone definitely dropped the ball on this case. That's all there is to it. But, the family wasn't aware of the possible effects of the radiation years later on the body, and they didn't know what to look for. I'd expect a trained physician to be aware of this and to perform the necessary tests when a patient presents with classic s/s of a disease. However, I am not/was not in their shoes and I'm not trying to pass judgement. I'm incredibly angry about that, but it's not up to me, and I can't change it.

I'm not looking to have all the answers, but I think it's important for a family to be able to have the information and someone who either has the knowledge or can get the information for them and be able to explain it. Let's face it, when dr's are busy or nurses are understaffed and running all the time, familes are hesitant to ask questions or to repetitively as for an explanation.. they don't ALL want to make your job harder.

My loves are helping people and research.. I'm trying to combine the two, based on what our family faced. I'm not trying to step on any toes, and I sure as heck don't intend on breaking the law.

[llg, PhD, RN]

It sounds to me as if one aspect of your personal distress and the type of distress you perceive that other people may have is that of "spiritual distress". You seem to be looking to provide comfort and closure to families as well as information. Nurses do provide comfort to families ... but so do chaplains, social workers, and counselors of all types. You might want to re-think your choice of nursing as a career to make sure that what you really want is a nursing role. You might be happier in some sort of counselling role.

If you decide that nursing really IS for you, then you will learn how to provide comfort for families ... and you will also learn that sometimes, these situations are simply difficult and painful and no matter what you say and do, the family is going to experience pain and grief. All you can do is help them get through it ... and hope they find additional help along the way as time passes. Each professional does his/her part and sends the person on to the next experience.

Finally, not all families want to hear that "everything is going to be OK." And not all families want all the detailed information that you sought. That was your personal reaction to a tragic experience in your life. There is nothing wrong with that, but don't assume all people/families have the same reaction. Other people do not want all those details. Some people like their information without any sugar-coating or kind, but uncertain words of reassurance. Be careful about assuming that your personal reactions/preferences are the norm.

Whatever you decide for a career, I hope you find what you are looking for.

llg

[Katnip, RN]

Sorry if I came across as harsh. But really and truly, you can't tell someone it will be allright, even if it's what the family wants to hear. You can tell them that you're doing everything possible to help them.

I have had multiple families who were in critical care. My mother took years to die, and yes, it's frustrating not to have all the answers. But sometimes the answers just aren't there.

I'm not sure of what kind of title or if there even is a specific position that fits what you're looking for.

I do wish you luck getting into nursing school. It's very obvious you want to be a patient advocate.

[Havin' A Party!, ASN, RN]

Sorry if I came across as harsh...

Don't think you did at all. Nothing to apologize for IMHO.

[gypsyatheart]

I agree with the other posters, cybercat, I think you just said it like it is. ARMickie, I am sorry for your loss, and I know a lot of your reactions are coming from your grief and your families'. That is something nurses must face regularly....loss of a patient. And we (meaning doctors, nurses, healthcare staff) do not always have the answers. Believe me, it is frustrating to us as well.

It sounds as if you might do well in a role of Social Worker, Counselor, Research nursing, and there is a program we have called "Parrish Nursing"....the nurse works closely with the chaplain to help counsel and provide comfort to the patient. Also, I just thought of Hospice nursing....very challenging, but a very compassionate area of nursing (not that we all aren't, but you kwim, right?).

Good luck in your career, and again I am sorry for your loss. :)

[stressednurse]

You would be a wonderful social worker. Or a nurse for that matter, but your interest in helping families in the dilemma, social worker would be best but it is a masters degree.

[Gompers, BSN, RN]

Cybercat, there was nothing wrong with your post at all. It was perfect, IMHO.

ARmickie, I'm very sorry for your loss. The other posters gave you some great career advice. I think once you start nursing school, if that is the path you decide on, you'll understand a little better what all happened with your family member. Medicine and the human body are imperfect. No doctor or nurse has all the answers. It is rather unethical to tell families what they want to hear rather than the truth. We cannot save everybody, and when we lose a patient, it's not always our fault because of mistakes or misdiagnosis. It just happens.

I know many people in my personal life who have come to me after losing a family member, usually after a stay in a critical care unit. They want to blame the doctors for not finding what was wrong in time or for doing the wrong treatments. But believe me, most likely everything humanly and medically possible was done to save that patient. REALLY. It's easy to say that someone was misdiagnosed or undiagnosed or whatever, but medicine is such a HUGE gray area. There are no definites, no guarantees, no two patients alike. Once in a while there are cases that were grossly mismanaged, sure. But it's more rare than most non-medical people think. Just because someone doesn't make it doesn't mean that the hospital screwed up.

Dealing with the families of patients who are dying or may die is probably the hardest thing a nurse has to do in her career. There really are no words at times like that. You don't want to lie and say it'll be all right when you know that most likely it won't be. Our job is to provide the most up-to-date information and then to support the patient and family through whatever happens.

[ARmickie]

I want to sincerely thank all of you for your replies. I appreciate what you've said, and it's not falling on deaf ears. However, I just want to explain something that most of you are hitting on... the telling the family everything is going to be okay. That is not at all what I'm suggesting. I'm saying that is most often a families state of mind... nobody sitting in a waiting room wants a doc to come out and say "I'm sorry.. we did all we could".. that is just not what you want to hear. I'm not saying to TELL them anything, neither good nor bad, it was simply a statement made regarding state of mind of families in the critical care arena.

I'm not blaming anyone for the loss of the nephew, really. I do believe that a diagnosis was missed, I'll openly admit that and I will always stand behind my belief in that. However, I also believe that when it *was* found, the medical staff did everything humanly possible. I believe that it was "his time to go", and he knew that as well. His story was truly touching in so many ways, but this is not what the current thread is about. I know that medicine is a science, not a perfection and that the human body is a very complex organism.

The longer I think about this, and the more posts from all you that I read, I think that perhaps the area I'm looking for is possibly patient education, or something of that nature.

Again, I don't mean to sound defensive or anything like that. I'm just trying to explain my thought process.. Thanks again.

Mickie