It's tough being the Fearless Leader

Did charge today ... ideal, because I wasn't as hindered by my ridiculous gimped up ankle. Also, it's a Saturday, which means no admissions for scheduled surgeries, and no patients that have to travel for special prcedures, and less physician traffic for consults and follow-ups. And, as a bonus, I had TS as team leader ... or unit slave, as the position is more colloquially called.

Wasn't a bad day. Sent one patient directly home from the unit. Transferred three patients to the floor. Admitted one non-ICU patient to start nightly BIPAP. Got three sick calls, which wasn't ideal. And had to deal with one family crisis.

I've been thinking a lot about our really sick, chronic patients. Partially due to this post on DS and this other post on a child who had an in utero CMV infection. We see a wide variety of chronically sick patients, mostly in the winter time. In the PICU, summer is trauma season, and winter is respiratory season. So, in the winter, we see a lot of chronically ill patients, who suffer from a variety of congenital or chromosomal disorders. We see kids who are very much loved and well-cared for, and those who have been institutionalized because their parents lack the desire or ability to care for them. We see families who rally around a sick child, and those that unravel with chronic illness. We see those who put the best interests of the child above any other consideration, and those who prolong a child's suffering for their own needs. It's thorny, to say the least.

Today, I had one family that was in a lot of pain. An older couple, had been through years of fertility treatments to obtain their hearts' desire. Finally, their wish came true, but with a twist. Their eagerly anticipated baby had a non-hereditary syndrome that encompassed many congenital anomalies, affecting almost every organ system, with the outlook of a life filled with hospitalizations and surgical procedures. Added to this fact that the couple, although settled in the US, is from a first world country with socialized medicine.

I should have known that something was amiss when a consulting attending physician disrupted our unit attending rounds to speak with the attending on-call about this family, and their dissatisfaction with hospital medical staff. They had been presented with alternatingly rosy and gloomy outlooks on their child's prognosis. They had heard second-hand whisperings about physicians who reported not wanting to be involved in the case. They were put off by the brusque manners of specific doctors. The situation concerned me, but got lost in the hectic pace of the day.

(Aside: I might note that the day already had a white-rabbit-I'm-late quality to it. Morning rounds (with the fellows and the residents) hadn't finished until 1130, and the attending rounds had been delayed because of several mini-parent conferences regarding several very sick patients, and one not-sick-at-all child of a very pushy VIP. We didn't start attending rounds (with the attending, fellow, and charge nurse) until 1300.)

When we finally finished attending rounds, Half & Half came up to me and pulled me aside and described the situation ... the family was really upset, and wanted to meet with Nine Yards (the critical care and anesthesiology director). I groaned. I think I might have mentioned in several places how much I hate psych-social issues in nursing. But I knew that this had to be addressed today.

So, I gathered my thoughts and resolve, platered a gentle smile on my face, and knocked on the room and entered. I was unprepared. Instead of the angry and remonstrating parents I expected to meet, I met some lovely people. The parents were warm, clearly well-educated, and extremely reasonable. And as I listened to them, I could see that they needed me to be there.

Yes, they had been receiving very contradictory stories. Generally, the PICU physicians are really good at telling it like it is. Of course, some are more gentle and tactful than others. But they tend to give their expert opinion, based on the most current findings, and offer as many options are a possible. And, just as generally, many other services offer extremely rosy outlooks ... the oncology service comes to mind as one that is generally not realistic enough to benefit parents. The best solution for this mismatch of outlooks is best solved by a genuine parent conference, where the family is able to sit down with all the services involved in the child's care, hear all the opinions of the specialists, and have a chance to get their questions answered in a cohesive and understandable way.

The parents were further confused by the parade of physicians involved in their child's care. Not only are there mutliple services involved, but the attendings roate weeks on call. Then there are also the fellows in each service, and all the residents just in the PICU. The solution for this was to have one person overseeing the patient's care on an on-going basis ... someone the parents could meet with during office hours, who was available on a consistent basis, and not just on a by-the-week basis. The ideal solution would be to have a case manager keeping track of the patient's progress, to coordinate and be a support to the family.

The parents' unhappiness was compounded by the fact that there was a serious trend of miscommunication. When the physicians talked about the child's prognosis, all the parents could hear was that their child's life was intolerable and not worth living. I can emphatically state that this was never implied. Aside from cases of documented brain death or a DNR (do not resusitate) order, we do everything we can to restore and/or improve the health of our patients. Added to this was the fact that the parents had shut down when the physicians broached the subject of a tracheostomy. Apparently they had met a child who had the same syndrome, and who had a trach, and it became their worst fear. Clearly the parents needed someone to support them and facilitate communication with the healthcare team. Sadly, our unit social worker was on vacation, but I got the covering social worker to step in and start working with the parents.

And lastly, the parents wanted to speak with Nine Yards, which I agreed to arrange.

So, what did I do (besides try to keep my nervousness under wraps)? I practiced my reflective listening skills. Heard them out. Tried to reflect/rephrase their statements. Clarified when I could. Offered the above four ideas as a starting place. They were very appreciative, and I felt that I had helped de-fuse a potentially combustible situation.

When I left, I found an empty room and paged my on-call manager. And she listened to me. She took the responsibility to get a case manager involved. She informed me that Nine Yards was still on vacation. And advised me to broach the on-duty attending about what had transpired so that he was aware of the situation. She was a calm port amid the shrieking voices in my head.

Re-entered the unit and was immediately swept back into the business of being The Fearless Leader. Couldn't seem to get the on-duty attending alone for a minute ... demands on both his and my time. However, I finally got a quiet moment with him, and updated him on my conversation with the parents. Afterwhich I had to listen to him and help de-fuse some of his enfensive mechanisms. Afterwhich he calmed down, and was able to talk with the family to arrange for a conference. Afterwhich I approached the parents to follow up. We reviewed the goals of having the parent conference, getting a case manager, and involving the social worker. I told them that Nine Yards was on vacation, but that we would let them know when he returned and arrange a meeting.

My personal opinion? I think these parents will love their child with all their might. I think the child will be very well cared for. My hope is that they always put the best interests of the child ahead of their need to be parents.

With all this, you would think that I would be chomping at the bit to get home. If I wasn't gimping, I would have hightailed it to Pasadena for salsa dancing at Paseo Colorado, then blues dancing at One Colorado Courtyard. However, it wasn't even a possibiility ... and the night shift was short-staffed until 2300. So, I gave myself the smallest patient possible, gave report to the oncoming charge nurse, and stayed four more hours for the overtime pay, and to wind down from a rollercoaster of a day.