patient advocacy

[Debbrn]

As some of you may remember I am a pediatric nurse along with being a TOF patient. Thursday I have to give a 10 minute talk on patient advocacy at our units yearly staff meeting. All of a sudden I am at a complete loss as to what to say. Anyone have any suggestions? Parents would be especially helpful since I work in pediatrics, but adult patients can have helpful ideas too. How would you like your (child's) nurse to be an advocate during the hospital stay?

Thank you.

Debbie

 

[Cris N]

Hopefully Nancy will be along - I'm sure she can give you a few good ideas. As far as children are concerned - do you have a Child Life specialist in your area? If so (s)he may have some really good ideas - otherwise you might get some good info from here: http://www.childlife.org/

Good to hear your unit wants more information.

As a personal note, while I think it would be great that my (child's) nurse be an advocate I'm not sure that it would necessarily work that well. Too much danger of putting the nurse in the line of fire between the hospital and the patient - great risk of conflict of interest. I don't know too many nurses who can afford to lose their jobs by taking a strong stand that might be contrary to insurance company / hospital administration / doctor. An independent resource person or well trained friend/family member would be a better choice for me. The questions are, how do we train friends & family and how would we pay an independent resource person.

 

[Lynlw]

Hopefully Nancy will be along - I'm sure she can give you a few good ideas. As far as children are concerned - do you have a Child Life specialist in your area? If so (s)he may have some really good ideas - otherwise you might get some good info from here: http://www.childlife.org/

Good to hear your unit wants more information.

As a personal note, while I think it would be great that my (child's) nurse be an advocate I'm not sure that it would necessarily work that well. Too much danger of putting the nurse in the line of fire between the hospital and the patient - great risk of conflict of interest. I don't know too many nurses who can afford to lose their jobs by taking a strong stand that might be contrary to insurance company / hospital administration / doctor. An independent resource person or well trained friend/family member would be a better choice for me. The questions are, how do we train friends & family and how would we pay an independent resource person.

I have some thoughts, IF you are asking IF we would like the nurse to be the advocate, like Chris don't think a nurse would be the best choice,for the reasons she mentions it could be hard on them to advise against what the doctor says, and as a parent I would never be sure who the nurse was looking out for, even if the nurse meant well .
Child life, I never found that helpful to me as a parent, but great for the child,to help them feel comfortable,and not afraid, find things for them to do ect. if that makes sense. Honestly, in my experience a great social worker seem to me to be the best advocates and it kind of is what alot of them do as they help the parent navigate everything they need to deal with and put together, Insurance, home health, government aid, if they are eligable, early child developement, feeding clinics.... and since they don't work below doctors on the chain so to speak,like nurses, but more seperate, they don't have to worry about alot of things nurses would, or that parents could think nurses would. (like I might think the nurse would worry about continueing to have to work under a doctor, if she sides with the patient/family) I'm not explaining this well.
The problem I see if alot of parents are very happy, not understanding exactly what their childs CHDs are, as long as they know the name of the CHD and the name of the surgery, they are fine and don't want to know more and there are parents on the other end, who want to know EVERYTHING and want to feel like one of the team members and really listened to, so I imagine it is hard to make everyone happy and try to figure out which type of parent they are.

However IF you are asking, what we found that worked well with nurses advocating for our child. The most important thing to me is nurses really listening to parents and understand we do know our child and if we say something is wrong, this isn't normal, believe us and don't make us think we are over reacting. Also I find it very helpful after a little while after the doctors leave the room in the morning, stop by after we had time to take in everything we talked about and think of a question we should have asked, and ask if we have any questions or is there anything that is going to happen that day that we would like explained a little better ect. Sometime especially right after surgery or in the unit, you get a little over whelmed and sleep deprived and when the docs come to talk to you , you are trying to take everythig in and don't think of your questions until after they leave.
The last time Justin was at CHOP they added those wipe boards that each day they came in and wrote our nurses name for that shift on it (which I really appreciated, but it was also if there was somthing we wanted to ask about, we could write it on the board so we would remember when someone was in the room.

OH the most important thing to me,and I'm sure you know this growing up with TOF, but IF you are talking about a child in the same room as the child, PLEASE don't act like they are not there, especially as they get a little older, include them in the conversation, if they are paying attention and not trying to pretend you aren't there playing there video games ect. Ask if THEY have any questions. Most nurses and doctors in children hospitals are great at that, but some arent.

 

[Debbrn]

Thank you for the responses so far. I actually became a nurse because of the nurses that I had as a child. They sold me on nursing. During my visits when I was 6 and 10 they DID talk to ME and asked ME questions. I did not feel invisible which I had always felt before. No one had ever talked to ME. In fact, during doctor's appointments after the physical exam I was sent out of the room. I do try to always include the child whenever possible.

Cris,

Thank you for realizing that we do get got in the middle. I have hit so many brick walls trying to advocate for the patients and there families. Once, I figured out why we were all of a sudden getting abnormal lab values for a specific lab and got yelled at from my boss for it. The problem was fixed though and the labs were more likely to be in the normal range after that. Before I brought it up, no one had realized that there was a problem. I have to constantly think whether being a advocate sometimes is worth the consequences. I just can't keep my mouth shut. In one job I had I tried to have the help available that was required my the accreditation board and was told that "you do not have enough productivity for another staff member."

Debbie

 

[briansmom]

quote from Lyn
However IF you are asking, what we found that worked well with nurses advocating for our child. The most important thing to me is nurses really listening to parents and understand we do know our child and if we say something is wrong, this isn't normal, believe us and don't make us think we are over reacting. Also I find it very helpful after a little while after the doctors leave the room in the morning, stop by after we had time to take in everything we talked about and think of a question we should have asked, and ask if we have any questions or is there anything that is going to happen that day that we would like explained a little better ect. Sometime especially right after surgery or in the unit, you get a little over whelmed and sleep deprived and when the docs come to talk to you , you are trying to take everythig in and don't think of your questions until after they leave.
The last time Justin was at CHOP they added those wipe boards that each day they came in and wrote our nurses name for that shift on it (which I really appreciated, but it was also if there was somthing we wanted to ask about, we could write it on the board so we would remember when someone was in the room.

I agree with Lyn whole heartedly on this. One of the best things that nurses have done for me is to support ME in MY advocacy for my child. My son has a heart transplant coordinator that is an NP (he is not on the list at this time but still is a candidate for the future). She has been so wonderful and is willing to spend a lot more time explaining things to me than doctors are able to spend. There have been various nurses who have also supported me - from answering questions, to believing me and telling me that I am not crazy. I think it would be really hard for nurses to go against doctors, but they can support the parents to achieve their goals.

I think this is tremendously important and an unappreciated area of nursing.

 

[Nancy]

I was trying to think about some of the excellent nurses Joe had, and he did have a few. The ones that stood out in my memory went above and beyond and were extremely caring and intelligent. And they were also very outspoken when they felt something was wrong.

The good ones discovered things going wrong before I did and took steps to correct whatever it was, and they told me about what they saw or did.

They were also very kind and were people oriented. They were thorough and knew how to take care of all aspects of the medical care and all aspects of the personal care.

I remember one older gal who had been a nurse for a very long time. Joe was quite thin and he was always in danger of developing bedsores because his skin was also thin and rubbed against his bones. I spoke with her about this the evening he was admitted to her floor. She immediately ordered a special mattress cushion for him and ordered some cushioned booties for the heels on his feet. She didn't ignore the problem, but had a great idea to prevent something from happening and she did something about it.

I spoke with another gal about the IV fluid and the amount of sodium solution that was in the IV vehicles. It always caused massive CHF problems for Joe, since he was hooked up to IVs continually. Instead of ignoring the problem, she looked into getting a lower dose sodium IV vehicle for him.

When Joe had gallbladder surgery, he was not doing well afterwords. And I noticed that his stomach was swelling up. I mentioned it several times to his nurses, they pooh-poohed it and told me that was the way this surgery went. I knew differently, since I had had gallbladder surgery myself. I kept complaining about it. Fortunately, there was a shift change, and his new nurse took one look at the swollen belly and knew that he has bleeding internally, and had him transferred to the ICU. As it turned out, he had a complete bleed out and almost died. He spent a long time in the hospital and it took months for him to recover. But that nurse saved his life. The others--well--You know what I am thinking.

Unfortunately, his surgeon denied there was a problem. That was because he nicked Joe's liver. So I think this nurse acted on her own w/o any input from him.

Joe had an outstanding male nurse and male nurse manager in one of the hospitals he went to. They covered every aspect of his care so extremely well. It was the only place I ever felt comfortable leaving him in. It was a cardiac intensive care unit, and maybe because of this, they were extra special. But there were no mistakes, ever. The care was constant and they looked at everything going on with his body, his lab work, his IV line hook-ups, his medications, his personal care, one or the other of them was in his room frequently and they were very hands on. It was the best unit ever. It ran like clockwork. Even the shift changes were seamless. Many times, during shift changes, there is no patient coverage for a while until the meeting is finished, and the nurses start circulating around again. Not at this hospital. I don't know how they did it, but there were no lapses in care. This unit even had one guy whose job it was to go around and speak with the patients, and joke around with them. I think his job was to observe the emotional aspects of the patients in that unit. He was very knowledgeable, but really didn't do the patient care that the nurses did. It was an unusual setup. This unit also took care of heart transplant patients.

Many times Joe had the nurse managers take care of him because he was so complicated. They were the best, They came around often, they were thorough and they knew their field cold. There were no slip-ups, and care was constant and excellent.

The good ones spent a very long time with the patient history and were interested in it and asked many questions which showed their interest.

I had conversations with many of these great guys and gals, and they told me that they spoke up with the doctors when they felt something was going wrong. And the doctors respected the excellent ones because they told me that in conversations with them.

Nurses are involved with patient care on a continual basis. Doctors are in and out, and now many hospitals have hospitalists who are even further removed from the intimate knowledge of the patient. You used to be cared for by your own physician while in the hospital, that is slowly going away. So good nursing care is very vital to the success of a hospital stay.

I think patient advocacy starts with a very caring person who actually likes the people they are caring for, and who likes the field of nursing. Because they like the field of nursing, they paid attention to their training and have incorporated that with great common sense. That seems to make the best nurses.

Yes, they can get caught in the middle at times, but to tell you the truth, most of Joe's doctors really respected the best of the best nurses, and listened to them when they felt the patient was having a problem.

Contrast the above with the worst care, and this is what that looks like. No one comes around, you wonder if there are any nurses on the floor at all, patient call bells go unanswered, nurses hang around the nursing station joking and laughing while the call buttons are ringing. When they do come around, they are careless and clueless, and spend very little time taking care of the patient. I'll never forget one gal on the housekeeping staff who told me that Joe had slipped out of the recliner chair he was in and was on the floor. She took care of him and got him back into the chair. Where his nurse was is a mystery to me.

 

[Marcia58]

My perspective is slightly different--that of the adult child of a hospitalized parent. My mom was 3.5 months in hospitals/rehab, following an MVA that left her with 18 fractures and a ruptured diaphragm with intrusion.

* Give the parent credit for knowing what they're talking about. They know their child, and some of them have been facing this so long, they know almost as much as a resident about their child's condition.

* Let them teach you the "nuances" of their child. Staff was going to chart my mom as non-responsive, when in reality she'd lost her hearing aids in the wreck. It also came quickly to light that I could lip-read my mom and help her "talk" to the staff, even while vented.

* Remember that a cranky patient might not just be fussing. It might be an indicator that something's wrong.

* Help older kids learn how to advocate for themselves when possible.

* Make the parent feel like part of a team. Let them help with basic care if it's possible and they're interested.

* Listen to their happy stories of their child, as well as their concerns.

* Treat them like a peer whenever possible. Help translate medical-ese into English. Goodies at the nurse's station?--Offer to share!--When you're staying with a sick loved one, special treats can be few and far between.

* If they're standing in their child's doorway, they're probably bored, lonely, worried. Talk to them when you go by. Make small talk. Don't let them feel invisible.

* Make sure they have the contact info for the Patient Liasion department.

* MAKE SURE THE PARENT/FAMILY MEMBER-ADVOCATE IS TOLD THE TRUTH!!!! (I was once told that "Drug X never causes those side effects," when they were exactly the side effects it was noted for!)

I guess most of what comes to my mind is giving encouragement and help to the patient and/or family member as they advocate.

Hope there's something here you can use....

Marcia

 

[Bridgette]

I think a good nurse is some one who:

Listens to patients and families concerns and takes them seriously.

Does not dismiss lay peoples knowledge and experience of illness and is prepared to accept that many people do their own research and therefore may have built up quite a bit of knowledge about their own condition - the nurse would hopefully be willing to discuss things with them on an equal footing.

If asked to by the patient, is prepared to communcate the patient's concerns to the doctors who always seem to be so rushed and busy and not have enough time to really answer questions.

Those are just a few thoughts - hope they help?

 

[Lynlw]

I'm not on much today but wanted to add, something else I thought of that I think is great at some childrens hospitals. They have a treatment room (and of course the treatment room is cheerful and stocked with lots of stickers ect) and their rule is the child never has anything done to them in their own room that hurts, IVs, dressing changes, pulling tubes ect, if there is a chance the procedurte MIGHT cause some pain or scare the child it is done in the treatment room. They think it is better for the kid if he knows that their room is a "safe place" that no one will hurt them, so they don't have to be scared when anyone enters their room, because they know only good things can happen there. I think that makes a big difference in the whole experience, when they child can relax in the room and not constantly be on guard when someone walks in.

(ok be back tomorrow I had another spinal block today, but kept thinking about your talk.)

 

[Debbrn]

Actually at the hospital that I work at the physicians usually listens at least if not more than the nursing hierarchy. Nurses do not work under the physician. Yes, they write the order, but nurses are responsible to know if the order is reasonable. You can not you the excuse "that is what the order said to do". For example, every dose of medication is individual in pediatrics. Sometimes residents forget to write for an appropriate dose for a child. I have had many a medication dose changed because the original dose was incorrect. We also have a policy and procedure manual that helps guide us in our job that originates in nursing. I have made a few physicians furious with me, but I have gotten praised by many more. I have saved lifes by getting the patient the help they need when the child's own doctor did not have a clue. Once I even went all the way up the chain of command to the medical director of a group of doctor's because a specific doctor would not take no for an answer. Yes, I was scared, but the medical director agreed with me. The medical director told the attending no.

Joint Commision that accreditates hospitals says that the most common error is "failure to act". All hospitals are now required to have "rapid response teams" that are different than code teams. They can be called by any physician or staff if the doctor is ignoring a problem, is unavailable, or if the problem is outside there field of expertise. Our response time is about 15 minutes. Two ICU nurses and a respiratory therapist responds and evaluates the patient. They then call an ICU doctor for further instructions. This team has decreased codes on our floors by over 50% in less than a year. For the most part, our doctors love it. This team is now part of our chain of command when a serious problem needs to be addressed.

Debbie

 

[Bridgette]

I didn't mean to imply that nurses work under physicians, or are somehow inferior - quite the reverse!
But, what I meant was that in my experience, a patient has a lot more one to one contact with the nurses than the doctors - the doctor might visit once or twice a day but the nurse is there all the time, and can, as you say, challenge the "written orders" of the doctor if they (nurse and patient) don't think it's appropriate etc.
Sometimes you feel too sick and drained to self advocate, that's all.

 

[Cris N]

Debbie, it sounds to me that you work in a very special environment that values the opinions and experience of the nursing staff.

So, tomorrow is Thursday - do you have your talk prepared. I bet folks here would appreciate your sharing if you feel comfortable.

 

[Lynlw]

BTW the PA we had first today did NOT listen to us, talked down to us, assured us he had a pimple that just happend to be on his incision and that Justin must of picked it, told us since he didn't have a fever he would be fine,that we could have just gone to his GP for a skin infection, that they don't have a clinic and did this as a favor because we called the surgeon and his past history. She would NOT listen to us, that this is exactly what it was like right before his last infection surgery, that his temp is always very low and rarely will it go above 100, she said well call if it does, otherwise we can't do anything.... While she was there and I was trying to take a deep breath before I said anything else, the CT fellow came in felt his sternum "click" (she missed that) and called an attending down, when the attending started dicussing surgery ect the PA who talked down to us and tried to stump us explaining big words, heirarchy how things are done ect, slunk out of the room without saying anything. I was thinking of your paper when we were waiting to see the plastic surgery attending and wish someone taught HER what you are doing.

 

[Debbrn]

I gave my little talk today. It went ok. It was the first topic after lunch so everyone was sleepy. I mentioned ya'lls thoughts. Thank you very much. 1)Listen to the parents, they know there child 2)Take time to explain things to the child and give them time to ask questions and voice there concerns. Don't treat them as if they were invisible 3)Remember to use the treatment room for procedures. I also mentioned going over the way we perform our duties. Is there an easier, less painful way for the child. What does the evidence say, or do we need to do research to find out.

Debbie

 

[Lynlw]

That sounds just right. I hope you helped make life for kids and their parents easier, because you took the time to do this. (Can we put you in a box and ship you around to various hospitals? I promise to poke air holes in and leave a carrot ot two )