For a number of years now, I have had the honor of speaking to the brand new residents at our hospital. These are often young doctors who likely graduated from Medical School, top of their class, in May. I speak to them sometime in the third week of June, giving them enough time to pack all their worldly goods and travel to their placement between graduation and new residency. They begin seeing patients sometime around July 1st.
A large proportion of these doctors do not have children of their own. So they are experts on the anatomy and physiology of a child, but not necessarily experts on how to talk to them, or how to talk to their parents.
I get to speak to them on their first full day. It says a lot about the administration of Massachusetts General Hospital for Children, that on the first day of the new residency, these new doctors speak to parents. It sets the tone that the hospital is committed to family centered care. It means that they are serious about good communication between doctors, patients and parents.
Every year, a few of the parents from the Family Advisory Council go together to this rather informal discussion. We all introduce ourselves by way of our child’s illness. We are what is known as “frequent fliers” in the hospital world, or kids who are often in the hospital.
On this day, the first day of residency, we talk about bedside rounding. As its name implies, bedside rounding occurs around the child’s hospital bed. Everyone comes in and has the discussion together: doctors, the child’s nurse, a pharmacist and the family. The lead resident gives an introduction about the child and and her illness, and then discusses what they have done and what they need to do before discharge can happen. They will often discuss specific lab and test results. Then they make a plan for the day, ask if there are any questions, and then move on to the next kid.
But it is a very different experience when doctors are talking among themselves and when they are talking to families. Families haven’t gone to medical school, they don’t know the lingo. They don’t know that afebrile means that the child doesn’t have a temperature. They don’t know that emesis is vomiting. They don’t know what the thousands of maddening acronyms mean. So the residents, who have spent all of this time learning all of these official terms, need to rethink the way that they report when the family is there.
The new doctors also have to deal with the fact that the parents, normally the ones who are in charge of every action and detail of their child’s life, are feeling helpless and scared. That the child in the bed is also feeling that way, along with being in pain or discomfort. The terms of the situation make matters worse. No one is at their party best, so to speak. Parents deal with this in different ways. Some parents don’t want to know anything technical, they just want the doctors to fix it as soon as possible so they can leave. Some parents want to know everything, down to every acronym and decimal point, so they can figure out what is going on. Sometimes parents are hostile or sharp with the doctors as a defense mechanism. Sometimes they burst into tears. You never know what you’re going to get.
The temptation is to race through the bedside rounding, to cut corners, or to not answer all of the questions that the families have. After all, these doctors are in charge of multiple children, multiple illnesses, hundreds of balls in the air on any given day.
We, the parents, are there to say that bedside rounding is important, even when it’s uncomfortable, sometimes especially when it’s uncomfortable. We are a team, all of us, and we all need to be on the same page.
A team relies on trust.
Which brings me to my favorite question, that is asked every year:
“What if I don’t know the answer?”
These new doctors are used to knowing all the answers. They are used to being the smartest person in any given room. They have encyclopedic memories. They have been tested and they have been victorious. But what happens if, for some reason, they are caught off guard and don’t know what the answer is to a question that a parent or a patient asks?
They are afraid that they will look like a fraud.
But who in the world knows all the answers anyway? That’s not why they are there. They are there to find the answers. They might not know them all. And if a team is built upon the mutual trust of the participants, it is up to the doctor to say, “I don’t know the answer to that, but I will find out and get back to you.” And the key is to follow through and do that. They will win the respect of the family if they make that combination of confession and commitment to the truth.
It’s important to say one more thing, and we as parents say this every year too. When we are all together in the hospital room, we are modelling behavior for our children. We are showing our chronically ill children, who will one day grow up and have to speak to doctors all on their own, how to be empowered to do so. We are showing them that trust in medicine is important, that integrity is important, that bonds form when everyone is present in the discussion.
It is important to parents of chronically ill children to address the issue, try to fix it, with honesty and integrity, and to model this behavior for our children. If you think about it, that’s the way life should go, but especially within the confines of a vulnerable situation like a hospital room. Everyone needs to feel heard, everyone needs to feel respected, and great things can happen.
Brave Fragile Warriors: Caring for Kids with Chronic Illness 