Tuesday, February 10, 2009

Voicing Concerns – A little differently than I imagined

I set the wheels in motion last week to discuss some of our problems we have experienced with the head of pediatric medicine. However, what I did get was something rather different, unexpected, and somewhat interesting. It was actually more of a family meeting style set up rather than the one on one type meeting I was expecting. In attendance was the pediatric head, of course, The social worker that organized it all, the discharge coordinator that wrote the crappy letter, the nurse manager for the PICU, his pulmonologist, his surgeon, and a nurse practitioner from surgery. It was not exactly what I was expecting and I felt a little withdrawn from the idea, at first. I really did not think this was the venue for me to go into and start listing off our issues, especially in regards to the doctor that tried to discharge us. However, two things really struck me, number one this meeting was also going to be about what we can do to improve for the next time we are admitted. Having everyone here was a great place to discuss this effort. Secondly, I decided if this was the set up they chose I was not going to be swayed or intimidated about addressing our issues. I did feel a little awkward and at times thought I really do not need the pulmonologist here to listen to me complain about the discharge coordinator’s letter and efforts to dampen our chances for increasing nursing, but never the less I had my opportunity, I was going to seize it. I feel it was semi productive in the sense that they were able to hear some details about some of the issues and figure out where to address them properly. We also discussed the need for some understanding and a team effort by everyone involved in Elias care and try to support some common ground rather than the varied opinions. It also turned into Elias becoming a poster child of sorts for the hospital and growing the chronic care needs. They asked if I would be interested in potentially expressing my concerns to the administration, or the suits of the hospital. They are the one’s that ultimately control the resources the doctors have at their disposal. They also acknowledged our desire to improve the care Elias is getting and said that it was important to hear what we have to say. I added that one component to the team effort is that they start listening and responding to what we are telling them about Elias, like his specialist do. Unfortunately, the meeting was not as productive in regards to my outrage about the foiled discharge plan a few weeks back. The discharge coordinator told us that the doctor was the one who kept the case pending, not my REM case manager. We argued about many points and it was evident that we were going to have to agree to disagree. The one point we did agree on was that the doctor involved in those decision, will need to earn our trust again. Overall, I feel like we made a little progress. If nothing else, our grievances were aired and they know that we are not going to sit back and accept what comes our way. I won’t call it a victory, but it was not a defeat either. It did get them brainstorming on how to manage Chronic cases better and discussions with many individuals not even a part of this will be coming into play. So hopefully, for the next Elias that comes through, their parents will not have to exhaust themselves with tireless advocating and fighting.


  1. Way to go! Can I hire you to come advocate for my child too? I am feeling a bit defeatewd lately I must admit and am inspired by how you two keep facing tough conversations so well.

    Hope you see some results- both long and short term.


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