Family centered care for the chronically critical

[NotReady4PrimeTime, RN]

I'm doing some research into the issue of best practice for caring for the chronically critical child in PICU. You know, those kids that are in PICU for weeks or months, often due to chronic respiratory insufficiency or some other high-acuity problem such as an open abdomen following liver transplantation. Our unit does not do this very well. It typically degenerates into a power struggle between the family and the nursing staff, with a lot of resentment on both sides. Some nurses are very liberal in what they will allow the family to do, in terms of unit policies such as permitting a room full of visitors (we limit to two at a time due to space constraints), staying in the unit when the unit is closed for procedures, sleeping at the bedside (in rooms that are not designed, equipped or having adequate space for that), bringing and consuming food in the unit (not permitted for anyone, staff included) and using the staff room for warming up their contraband food, making personal calls on unit telephones, choosing the nursing staff who will care for their child, dictating when, how and by whom nursing care is carried out then intimidating anyone who doesn't know the drill, and loosening the professional boundaries by inviting families into their own homes. Others try to maintain some semblance of professionalism and run afoul of the parents because they've been given the keys to the city, as it were. Try explaining all that to parents who have always followed unit policies. Most often what ends up happening is that no one wants to be assigned to the child because they have to then also have the family; continuity of care suffers greatly. Our management has decided to set up regularly scheduled meetings with the families to try to alleviate some of these problems, but they do not include the bedside nurse and they do not document any of the discussion or decisions made at these meetings. They also are perceived to be "taking the parents' side", so no one truly knows what is going on or if their concerns are even being heard. One particular family has alienated nearly every nurse in the unit, but puts on their game faces when around medical staff or management so that the nurses look like crybabies. They also have the belief that their child is the only patient in the whole hospital and expect special consideration. "There's an ultrasound booked for today. Why hasn't it happened yet?" at 9 am... "When will the radiologist come to talk to us about the ultrasound? It was done hours ago," at 1 pm... "The radiologist still hasn't come to see us and it's almost supper time,"... even though it's been explained to them more than once that the radiology staff NEVER come to the unit for things like that, they speak to the intensivist, who speaks to the family... if there's something of concern...

Before anyone flames me, I have walked the walk as the parent of a chronically critical child of my own. I know better than many that parents are the ultimate experts in their own child and that parents deserve to be included in decision-making and in providing care. I don't have a problem with any of that, as long as the relationship remains professional and that parents understand I will use my own clinical judgment when disagreements arise.

How does your unit handle these families? Do you have policies or protocols that enhance the relationship without creating bigger problems? Do you have support from your management and medical staff when issues arise? Do you feel that your unit does a good job with long-stay patients and families, and why? All responses gratefully appreciated.

[PICUheart]

Wow- the situations you described sound all too familiar janfrn!!!!

[AlabamaBelle]

We are supposed to be practicing family centered care. For the most part, we are doing pretty well with this. We will be moving into a new "children's hospital" in the next few months and family centered-ness was the key component in designing the rooms - "patient area", "family area", and "nurses work area". Care to guess which is the smallest space?

One of the things I do with regard to visitation with my families is to explain to them what "family centered care" is. We are open 24/7, invite parents (and only parents or legal guardians) to listen to rounds - the attendings are good about inviting questions/concerns at this time. I also am very careful to emphasize that there are "those times" when we may not be able to let them in/out and to let them know if they are out and it's their child, they will know what's happening. Families have also witnessed codes in the unit. The number visiting, I tell the families, is patient guided. If everyone is calm and the child is enjoying/tolerating the visit, okay. However, if I feel the child isn't tolerating, no matter how many, I reserve the option of de-escalating the visit. Most parents tend to be agreeable to this.

I think you might have visited our unit in the last few months - we've had some very interesting families. Most of the families have responded well to just having conversations with us about how things work in a hospital as opposed to the real world - like nothing rarely gets done on time, delays, etc. We've had families trying to split the staff and the fun drama with that - the whole unit was aware, down to the attendings, and no one played along/fed in to the shenanigans.

All that being said, I am fortunate to have a nurse manager who is a born diplomat. She's accessible to us and to the families. Can't say enough about what an awesome job she does, as well as our assistant nurse managers.

I think I've forgotten something. When I remember, I'll try to remember to post.

Cindy

[AlabamaBelle]

Oh, I know - about the eating thing. Parents are welcome to eat in the child's room. Of course, alternative suggestions are made if the child is awake/aware and NPO. We have our break room in the unit and have a designated area near the desk for drinks/light snacks. If we didn't have an in unit breakroom, we'd starve. On really busy days, our NM will generally buy our lunch - pizza. The couple of times, cheesecake got added.

We also do have a nourishment area for the families - lately that has been a real lifesaver for us and the families - if the families are happier, we generally are, too. One time though, we had to move the goodies to our breakroom because one family raided the cupboards so freely and with little/no restraint.

Cindy

[NotReady4PrimeTime, RN]

Wow- the situations you described sound all too familiar janfrn!!!!

So I guess you're saying your unit is about as successful as ours...

CindyMac, thank you for your response. Many of things you mention are things we do as well. But we don't have individual rooms, we don't have "family space" and we don't have a NM who buys us pizza when it's too busy to get away for a meal. One of our attendings, who isn't blind to what's been going on, took on our NM at one of our weekly meetings with our chaplain (set up to help staff work through stressful situations and feelings) over the family I mentioned. (I forgot to mention that this family has been our guests before on two other very lengthy occasions... with similar issues.) He suggested that perhaps if our manager wanted us to believe she supported us, she'd put on scrubs and take the child for a 12 hour shift. She, of course, had a hundred reasons why she couldn't do it.

What I'd really like is to draw up a set of guidelines for families in this situation so that everyone is working from the same recipe.

[kessadawn, BSN, RN]

i feel your frustration. our picu has has some serious issues with some extremely demanding families, and your right, they truly believe that their child is the only pt in the unit. we have been lucky enough to move into a newly renovated unit filled with private rooms, so space isn't usually the issue. we had crowd control issues at first because the unit wasn't locked and people came in and out as they pleased. (safety issue anyone?) people without passes became indignant when asked to show one or to leave. thanks to a potentially violent parent, the unit is now locked 24/7. we have had to be absolutely diligent during the admission process when discussing visitation policy with families, and part of our required admissions charting includes that discussion. it doesn't matter if that kid is staying for 6 months, or if this is they're 17th admit this year, we go over it again. and again. being consistant has really been the only thing that made a difference, and it's a long process of getting all the staff to comply with the changes (because we all know how flexible we icu nurses are and how much we relish change! ) it is getting better, and of course you'll always have that one family. i do feel for these families as i was a frequent flier picu parent at one time also, but you have to draw a line or the poo will hit the fan. the best advice i can give you is to get all staff members on the same wavelength, nursing, secretaries and management. if you have even just a few making their own allowances with these families, it will never work. good luck!

[NotReady4PrimeTime, RN]

I know that's what ultimately will be the route we have to take, but it will definitely be an uphill climb!

[CritterLover, BSN, RN]

i know that's what ultimately will be the route we have to take, but it will definitely be an uphill climb!

jan,

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[color=#483d8b]i'm not a picu nurse, (nor will i ever be :) ), but this really does sound familiar.

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[color=#483d8b] i have encountered much the same scenerios in an adult trauma icu. only there, the "children" were usually over the age of 18. well, at least over the age of 16.

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[color=#483d8b]doesn't change much in the parent's expectations, nor in the playing staff against each other.

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[color=#483d8b]our long-term patients teneded to come in the form of c-spine injuries resulting in quads, and severe chest trauma/pulmonary contusions; both resulting in long-term stays for vent issues. (that particular hospital didn't have a unit for vent weans).

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[color=#483d8b]i think you need a new manager.....

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[color=#483d8b]ours was much like yours: she took the family's side over just about everything. it was very frustrating.

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[color=#483d8b]anyway, what saved our butts was an attending physician (medical director) that had our backs, and would take issue with the nurse manager, who didn't. many of the inane rules she tried to implement were vetoed by the medical director.

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[color=#483d8b]since you have an attending physician that has stood up for you in the past, is it possible to get him/her on your side on a regular basis? would he be willing to be included in these "family meetings" that the staff nurses arn't a part of? or would he be willing to insist that the staff nurses have a role?

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[color=#483d8b]i'm just so thankful that we only had a couple of patients like that at a time (20+ bed unit). i can't imagine what it would have been like if half the unit had come with overbearing parents......

[NotReady4PrimeTime, RN]

jan,

[color=#483d8b]i think you need a new manager.....

you've got that right! but it won't happen because she was just presented with a regional award for leadership after being nominated by our hospital's administration. (they certainly never consulted with any of the rank and file!) our nursing director hand-picked her for the job in the first place and firmly believes she can do no wrong (since she has been molded in her own image). as for our unit medical director, he thinks we're all a bunch of overpaid, underworked whiners and that families are always right. he's also the one who pushes for us to do everything short of standing on our heads and spitting nickels for kids who should be allowed death with dignity. no help there. you might be on to something though in reference to our attending who values nurses... he could be brought on board. he's been heard to say (to our beloved manager) that he has trouble interacting with this particular family for the required ten minutes a day, and doesn't know why more nurses haven't just run screaming from the unit after 12 hours with them...

[dawngloves, BSN, RN]

Oh boy! We have parents like that. And if you don't let them do what they want they complain to the NM that they don't like you and you can't care for thier baby anymore. It really gets out of hand, especially if you don't have a NM that will back you up. Sometimes I long for the olden days where no one could visit and you called the parents to come get their kid when they were able to come home.

[AlabamaBelle]

But it won't happen because she was just presented with a regional award for leadership after being nominated by our hospital's administration. (They certainly never consulted with any of the rank and file!)

Janfrn: Had to laugh when I ready that one! One of our intensivists always landed on the Top MD in Pediatric Intensive Care list for our area. Absolutely no one knew who nominated him (or at least wouldn't admit it). The happy dances that were done the day his contract was not renewed were too numerous!!!

We have some written documents/policies that we use. However, at this time I am on leave of absence to care for my mother-in-law who is dying from pancreatic cancer. I am out of state and without access to the documents, but will get them to you when I can.

Our rooms are private, however, some of them are very small. A bed, a ventilator and IV pole and one chair takes up most of the room. Our new hospital will have bigger rooms, but we'll also be going up in number of beds.

It's good to know that all the craziness is not centered in our own locations and that there are others having the same experiences who can understand and empathize.

Cindy

PS - would you believe that there was one day that the staff refused pizza??

[NotReady4PrimeTime, RN]

PS - would you believe that there was one day that the staff refused pizza??

TOTALLY!! If it's being used as a sop to decrease disgruntlement over ridiculous workloads and unsafe staffing, I can totally believe it. Today was a perfect example of both those, but pizza was never even suggested. Who would have had time to eat it anyway? I had a left-over hot dog when I got home.

I spent several hours in the room with our favorite family today helping with the massive dressing change. I kept the dad distracted so that he wasn't focused on what drugs I was giving or how often (much less than usually used... cuz I was also talking to the child and distracting him too) and it actually went rather well.

I would love to see your documentation, but there's no rush. Take all the time you can with your M-I-L... it's precious and irreplaceable. I'm sorry you're living with this, take care of yourself too!