Trust is built in very small moments. ~Brene Brown
I was recently in a room where people were bashing their doctors and the way the doctors were speaking to them. I asked if they said anything, if they re-directed the conversation, if they stuck up for themselves.
The answer was no. These people didn’t speak out about their care, about the fact that they didn’t feel like a partner. They no longer trusted their doctor because their doctor didn’t make them feel like their input mattered. Instead, they felt like a commodity in a health insurance ping pong game.
I have learned that you need to actively build trust with doctors.
When you are a parent and your child is sick, it is a question of trust. Whom do you trust? How much do you trust them? Do they trust you? It is a delicate dance as doctors, nurses and parents try to get a feel for each other, to know how much to say, how much the other will understand, how much they want to know. We walked into a hospital room in crisis. Up until that point, we were the only ones in charge of our daughter’s well being. We made sure she ate her vegetables. We made sure she brushed her teeth and that we held her hand in the parking lot. We worried about silly things like milestones and if she said “excuse me” after she burped. We fastidiously clocked her time outs as a minute for every year of age that she was. And we worried. Mostly, we worried about whether or not we were good parents, if our little girl was going to grow up and tell her friends about us or rather use us as fodder for her standup comedy routine.
We were thrown into a hospital, a HUGE hospital. To give you some perspective, our town had roughly 5,000 people in it. We lived in a county with no stoplight. Massachusetts General Hospital had 20,000 employees, at least a dozen buildings, and that doesn’t count all of the patients and families of patients. I love maps, I am a bit of a geography person. I love to see the logic behind their layout, what streets are named, etc. A map of the hospital grounds didn’t help me. The buildings were there, but there were passageways that didn’t make sense, some buildings were six floors, some twelve, some twenty. Elevators didn’t always go where you thought they went. It was a tangled jungle of hodge podge buildings erected throughout the centuries. There was no logic: this hospital was its own world, with its own rules, times, hierarchy, acronyms, and expectations.
And urgency. As a teacher, the only time I ran was if there was a fight between two kids in the hallway, but you would see doctors whose pagers had gone off and they would run to get where they needed to go. They needed to make decisions on the fly, immediately, to save lives. Doctors are smart, sometimes brilliant people, and they are used to being the smartest person in the room. They have to decide how technical they can explain things because they are dealing with an ever-shifting clientele of different intelligences. They could be speaking to someone with an 80 IQ or a 150 IQ and they have to tailor their speech accordingly.
First, I must say that if a doctor is a pediatrician, then there is a good chance that he or she likes children. That is almost mandatory, because it is hard, incredibly hard to see sick children day after day and to deal with their parents. And by deal, I mean explain to them what is wrong with their child, if it can be fixed, and how it can be fixed. I have had doctors come to me as recently as last month, seasoned veteran attending physicians who have said, “I dreaded coming into your room every day that first month, because I never had any good news for you.” If you have children, if you love children, it nearly impossible to see them in pain. It takes a special person, in a doctor, to treat the child, not the illness, and further, to treat the family, not just the child. It is even harder if you think that that child might die.
We had very limited experiences with doctors and hospitals. I had only ever been in a hospital once and that was to give birth to Wendy. Michael had never been in a hospital for himself. His mother died instantly in a car crash when he was a child and his father had been healthy. Once, I went at three years old to see my grandfather as he was dying of cancer. I remember my father swinging me and my brother Tony around off of his shoulders and through his legs and watching my grandfather laugh, tongue green from some medicine. I also had a boyfriend in high school who had his appendix out. I visited him once.
But to say that I was woefully unprepared for the event in our lives was an understatement. Michael and I had also only had freshman biology in college. We learned about mitosis and meiosis and photosynthesis. We learned the difference between the organelles. And here were the doctors, dozens of them, coming in and out of our room, with a scared sick child, and a scared us. Add to that the confusion of the room, a newly renovated wing, where Wendy was the first patient in the room and the doctors and nurses were looking in every drawer and cabinet to see where things were. We looked out our window and could see the golden dome of the Bullfinch building, the original part of the hospital where the first operation using ether was performed. The staff called it the “etherdome.”
I knew we were in trouble. It was all so confusing, disorienting, and painful.
One of the smartest things Michael did was right in the beginning. He took out a legal pad, and as doctors entered and introduced themselves, he would ask them who they were, what they did, what department they were in, etc, and then he made a chart on the legal pad by specialty. The Nephrologists had one section, cardiologists another section, infectious disease another section, etc. This way, we would know if we had seen them before, or if shifts had changed and who was talking to whom. Sometimes we had to ask what the specialty did, because we had never heard of it before. Some of the doctors were hard to recognize because they had to all wear special gowns and foot protection, masks and gloves, as Wendy was still contagious. Many of the doctors were shocked at the list, they had never seen something like that before. At least the list gave us some semblance of order, and as the days turned to weeks, weeks to months, we relied less on the list and more on our memories, but it was that initial putting order to chaos that helped our peace of mind and gave us something to focus on.
Wendy spent a lot of time in the PICU that first summer, and we spent it right alongside her. We would listen in on the twice daily rounds, taking notes about acronyms and what was being said. At the time, parents didn’t join in on the rounds, way back in the stone age, and Michael and I just started going to the door of Wendy’s room and leaning out, until eventually we were invited to join. Then after about a week, the doctors gave us time for questions during rounds. If they didn’t have time for the questions, they promised to come back. And they did.
We were building trust.
This helped when we were told it was time for our family meeting, the meeting where we were told that Wendy wasn’t going to be the same girl she was a few months before, at least physically. We were to meet in the meeting room, a room I was later told is called the “Room of Doom”, to be told that Wendy had permanent damage to her kidneys and pancreas. This was before the abdominal surgeries, the systemic infection, and the heart failure. This was just the kidneys and the pancreas.
Believe me, it was enough bad news to take in at once. I didn’t need more.
But when bad news came in the coming months, and it did, we knew that we trusted the doctors who delivered it. Because in the summer months, they told us what they knew and they listened to our concerns. They answered our questions. They got back to us if they couldn’t answer them right away.
We were an exceptional case only because we spent so much time in the hospital. Some people say that trust is a formula of consistency over time, and we were in the hospital for hundreds of days. So we got to know the doctors and nurses really well. What happens when you only get to speak to your doctor for fifteen minutes at a time, a few times a year? How do you build that trust?
Sometimes trust is implicit. We trust that our doctors are smart and thoughtful. We trust that the degrees on the wall give them the knowledge they need to make good decisions. They, in turn, hopefully, trust our instincts as parents. If they don’t or don’t appear to, we need to remind them.
“I’m her mom. I know there’s something wrong. I don’t know what, but she…..”
Keeping a list of the things that are different helps. Keeping a diary helps. Stories help.
Because trust can’t just be implicit. It needs to be explicit.
What if we said to our kids’ doctors, “I trust you and your knowledge. I need you to trust my intuition.”
Would they? In my experience, most pediatricians would. Sometimes they just need to be knocked into the mindset that not everything is observable.
But here’s the important part: YOU NEED TO SHOW UP AND YOU NEED TO SPEAK UP.
You are the adult representative for your child, or as I like to say, “You are the adult in the room.” And though none of us ever really knew what we signed up for as parents, the fact is that we signed up. Here we are.
The doctor is the professional. You two are a team. Not only do you need to know that, the doctor needs to know that too. Building trust is hard and it takes time. It takes communication. But it is possible, with small steps and consistency, over time.