The Fragility of Trust in Medicine

“Don’t you trust me?”

As soon as the words left my lips, I could not believe I had spoken them aloud. I perceived a shift in the room, felt my own body stiffen. The patient and her mom greeted me with stares. Even if I had thought it, the words should not have slipped out. The tone of the visit changed. I had let them know my frustration. In the adolescent’s eyes, which rarely met mine, was a question: “Whose side are you on? Because if you’re against my mom, I’m against you.” So much for winning over my patient.

One year earlier, at our first visit, I was drawn in by the troubling history. The school turmoil had started more than two years prior. The mother spoke rapidly. Her daughter had initially been bullied by a group of girls on the bus. She became withdrawn. The parents started driving her to school. Once, the bold middle-school tormentors even followed alongside the car, yelling chants. She stopped going to school altogether. She began to wear her bangs long, obscuring her face. She became thinner and thinner. The daughter attended therapy — sometimes. The mother arranged for her to be home-schooled. They no longer went out together as a family. The daughter refused to eat in restaurants and became very anxious leaving the house. She rarely left her room.

I wanted to help. We spent nearly an hour together at that first meeting. At subsequent appointments, I spoke directly to the silent daughter, seeking to connect. There was a deep sadness in her gaze. We explored her interests in music — she especially liked percussion. I listened to the nervous mother. She was ardent about navigating her daughter through a turbulent adolescence but was entangled in her own self-doubt. She, too, had lived through a childhood filled with upheaval. In our shared moments, I laid the groundwork for collaboration. Time, I hoped, would lead to trust.

Fast-forward to this visit. The day had been a busy one. By the third patient of the day, I was already running behind. Still, I spent time with the patient and her mom. The exam room phone rang. It was the medical assistant: “Your next two patients are waiting.” The appointment was wrapping up — or so I thought. We had spent the better part of an hour discussing progress in some areas — no change in others.

I listed the age-appropriate vaccines she was due for and was about to leave the room. That’s when her mom took a step back and said, “Oh I have to think about that.” I reiterated what I had said at previous visits about safety and tried to allay her concerns. The parent continued to decline, telling me, “Well, I want to do my own research.” I was flustered and annoyed at this point. I had already spent more than the allotted time in the room, trying my best to provide understanding and good care, and then this?

I looked at her and asked, “Don’t you trust me?” As soon as the words left my lips, I knew I had said too much. I recommended the Centers for Disease Control and Prevention website, suggested having a follow-up appointment soon, and left the room.

I had another six hours of patient appointments, but that interaction gnawed at me.

Three days later, I was notified that the parent had called and told our practice manager it was “not a good fit.” They would be finding a new pediatrician.

Perhaps I should have sensed it. I had been very gentle in the beginning — listening, commiserating about the prior treatment mishaps and uncompassionate caregivers — but then I saw the entire story unfolding before me. This teen would be turning 18 soon, and there were conditions I should address before they got even worse. I had fallen into the trap of thinking I would be the savior.

Compassion and empathy are crucial for physicians, but becoming so emotionally invested that you feel let down if the patient or parent disagrees with you is too much.

As I had gotten to know the patient and her mother better, I learned how their life had plummeted downward, and I yearned to make a difference. I became bolder in my comments. I outlined the importance of working in concert with a therapist, mental health team, and nutrition team. I encouraged the teen to relieve panic attacks by exercising and getting an app for her phone. I offered frequent follow-up appointments.

Caring for a teenager is always a challenge — as a parent, teacher, or doctor. As a med-peds physician, I am attuned to this awkward transition phase since I care for both young and older patients. But throw in a pandemic coupled with fragile self-esteem, and the coping mechanisms of the caregiver and patient are overwhelmed. The role I strived for in this case was as advocate, health advisor, and healer. I saw myself as a broker, trying to work on a doctor-adolescent-family partnership. As I tried to ally with the parent, however, we diverged.

Doctoring is a humbling profession.

I am still trying to improve this coalition. When parent and pediatrician are aligned, all goes smoothly. However, my role supporting a parent also includes highlighting ongoing health risks to a child, even if it seems impolite. I pointed out to the parent that her daughter’s refusal to leave the house due to paralyzing anxiety was worth trying a medication. I did not say this at visit number one or even number two, but by visit number three, I spoke up. I saw the desperate eyes before me. And I also remembered my older patients who struggle as adults: a 24-year-old patient who has been in and out of the emergency department continuously due to emotional dysregulation; a 47-year-old adult who has not left the house in years. Perhaps each could be coping better if a careful treatment plan had been instituted when they were children. I wanted to intervene.

Until now, I had prided myself on working with all-comers. Since I began medical practice, my patients have included families on alternate vaccine schedules. It was a change from the usual pediatric care guidelines, but I reasoned some vaccines are better than none, and later is better than never. But I have also seen more and more young adults with chronic medical problems that could have been mitigated in childhood.

At that moment I blurted out, “Don’t you trust me?” I was unable to keep a straight face and pretend it did not matter if a child with a BMI of 17 eats one meal a day. Part of my frustration was my shock at the parent’s not partnering with my ideas. I did not see them as my ideas. I saw them as the general pediatric recommendations for a child this age with these illnesses. But in the parent’s eyes, I was no longer a teammate, I was a foe.

So here I struggle. I am mad at myself for not expressing my point of view in a more persuasive and kind way. I fell short of my intention, to provide guidance while building a trusting, open relationship. While I cannot ignore the dangerous patterns I see before me, I can still work on the way I address them. How do I walk this line?

The approach I took was too blunt. As much as the apprehensive teen had improved in comfort level with me in the last year, I miscalculated the fragility of the parent. And for this I am sorry. I got it wrong.

My exasperation bled through, and I lost sight of the goal: to build one teenager’s confidence, make her feel valued, and create a desire to overcome her challenges. I left out the parent for a moment, and the fragile scaffold of trust we were constructing fell apart. Perhaps I should have pulled the mother aside to spend more time talking one-on-one about what had worked so far and what hadn’t. I was so focused on reaching the teen that I missed reacting to the fear and concern in her mother’s eyes. She knew things were not going well. She knew this child was disconnected, different from her other children, isolated from classmates. Each failed treatment attempt reflected on her. Of course she wanted to do the best she could. She had so little control over the process of an anxious mind. But vaccines — now there she could say yes or no. And if there was any chance something harmful was going to enter her child’s body, she was going to prevent it.

I wish we had had another visit, time for another conversation. I am awash in a strange mix of heartbreak and righteous despair. I am grateful this is not the end of the story. The teen found another doctor closer to home and is making slow progress.

Doctoring is a humbling profession. Some days I don’t get it right. I struggle with dueling obligations: a duty to prevent harm and a duty to recognize one’s autonomy — even if that may put one at harm. Such is the dignity of risk. There is an elegance and beauty in laying the groundwork by explaining pathophysiology, reviewing treatment options, and then stepping back to allow individual (or parental) decision-making. But there are many gray areas. I wish to speak and convey the message of prevention clearly and kindly, but with ardor. I’ll call this gentle force. But for all of this, my day-to-day is frequently about getting through my lab results, patient notes, and trying to stay on time.

I blurted out my self-doubt when I asked, “Don’t you trust me?” I was really saying, “Please trust me.” At my core, I believe we are here not to judge but to take care of one another.

Andrea Reilly, MD ’95, is HMS assistant professor of medicine at Massachusetts General Hospital.

Images: CSA-Printstock (illustration); courtesy of Andrea Reilly (Reilly)