One day while Wendy was in the hospital in late 2007, an endocrine fellow came in to ask us if we had any pictures of her that we would be willing to share. The fellow was presenting Wendy’s medical case at Grand Rounds and she wanted to add a few pictures to the slide show.
At the time, we didn’t know what Grand Rounds was. Grand Rounds is an opportunity for doctors to present challenging or unusual medical conditions to their colleagues, along with what the course of treatment was, and allows a venue for the presenter to be challenged by his or her peers. It is a way to educate doctors both whom are going to the presentation and for the presenters themselves. It was a novel approach to have pictures of Wendy in the slide show, because for the most part Wendy is just supposed to be a “case” to be discussed, not attached to a face.
I remember thinking that like other parents, someday I wanted Wendy to be famous, but I never thought it would be like that.
A few months later, I was approached to speak at Grand Rounds myself. The Family Advisory Council at MGHfC spoke at one Grand Rounds a year surrounding the topic of family centered care, the idea that it is not just a child that the hospital is treating, but the family of the child as well. This Grand Rounds was designed to ask parents and patients if they had anything they felt was important to share with doctors of their children. Michael helped me prepare as to what I was going to say, and I have to say I was nervous, but it was a really positive experience. The doctors asked good questions and it was all together well received. The Family Advisory Council has sponsored Grand Rounds around conversations and communications between providers and parents, as well as asking doctors to speak as to how they have changed their medical practice as the result of having a sick child. These are unique opportunities for doctors and parents to arrive at the same goal: understanding each other in the quest to give the best possible care to children. It has been an incredibly successful endeavor.
Now, a new approach: having the pediatric patients speak directly to the doctors at Grand Rounds. This was the first time that an entire panel of speakers was all pediatric patients, at least at Massachusetts General Hospital, but I suspect that this is new territory for a lot of children’s hospitals across the country.
Wendy spoke yesterday with three other patients about their experiences. All four patients were teenagers, (well, Wendy was twelve and the youngest), and they were all what we would call “frequent flyers” in the medical world: they were patients who had been there a lot. One teen had cancer of the jaw, one teen broke a vertebrae while playing football, and two teens had undergone kidney transplants.
The themes were rather universal and centered around anxiety and communication. The teens asked to be listened to fully, have procedures explained to them, be addressed by their names and really be a full partner at the table. Isn’t that what we all want in medical care? What’s funny is that doctors know this, and I would be willing to wager that they think they are doing a good job at communication, especially those who work in pediatrics. Yet the gap in communication remains.
Here’s why I think yesterday was most beneficial. One: people connect to stories, and these kids had stories to tell. They are survivors in the medical world. They have grit. And they are vulnerable enough, willing enough, courageous enough to tell their stories, to tell what could be improved upon, to their doctors. Doctors don’t often get the opportunity outside of inpatient setting or the clinic to hear how they can improve. Two: a lot of these teens really made an impact on their doctors just by returning. They had been so sick and had such a positive outlook nonetheless, and they were succeeding in the world, not just as patients, but as people. They were inspiring. I don’t think that doctors often get to see their success stories years later, when patients leave they don’t come back, much like students and their teachers. Both medicine and education have a long term return that you don’t often get to see: the success of the child due to the efforts of the doctor/teacher. After grand rounds, so many doctors came up to me to tell me how wonderful Wendy looked and how grateful they were to see her.
Pediatrics is a tough field, but one of the things that a doctor said yesterday is that it also garners hope, which is a powerful motivator. Those teens yesterday might not know how incredible they are, they just know that they have an extra burden of medical issues. It’s the adults in the room who are affected by their tenacity in the face of adversity. Not just their tenacity, but their optimism and sense of self. They are not patients, they are people. They are success stories. They have a voice.
This is the new face of medicine, partnerships in success through communication. Yesterday was just one of the steps in the process.
A very welcome step.