She was soooo pretty. Blue eyes. Curly blond hair. She looked RIGHT at me. I almost had to look away it was so direct. I can still remember like it was yesterday. I should have known she’d break my heart. It was 37 years ago this month. Jennifer.
She was my first patient – at least that I could talk to. My first month of internship was spent in the intensive care nursery taking care of mostly premature babies. My second rotation was up on the toddler’s floor. She had a cerebellar astrocytoma – a brain tumor. It was non-malignant but not in a good place. Up tight in a part of the brain hard for the surgeon to get to and where precious functions are packed together – so a surgical approach could hurt her more than the tumor. On the other hand even just a little tumor growth could do a lot of damage. This was some kind of malevolent rock and hard place.
She was bright and had oh-what-a-smile and needed me. I was the right guy at the right place and we became fast. Her mom called me when things weren’t going well. I got to know her father and her brothers and sister. I visited her at home. I had a crush. It was mutual.
I find this a little embarrassing talking about it in retrospect. What did I have to offer? I was an intern. We knew nothing. And here I was falling head over heels in love with a three year old. Weren’t we taught in school not to become too attached to our patients? It would wreck our objectivity. Maybe as a reaction to the month of working in the Intensive Care Nursery, I was willing to throw objectivity out the window. So I got attached. And of course I learned a lot. She taught me many things. Are most physicians’ most memorable patients their first ones? I’m guessing yes.
An original meaning of the word doctor was teacher. I find myself doing a lot of sharing when I’m with my patients. I see one of my roles as educator – understanding helps a patient become their own healer. Then we can share the responsibility. This seems good. Although physicians learn a lot of what we practice from books, I suspect MUCH more comes from our patients. There is a gap between the textbook and the bedside. So we understandably remember and value the patients that taught us the most and Jennifer fit that bill in spades.
What Jennifer and her mother Glenda taught me was what was important to them. Certainly competence and information were important. I learned a lot about what behaviors in other physicians they found helpful and what information they found useful. Often the information didn’t come as much from the doctors as it did from the nurses or the nurses’ aids or the person that brought the food to them. That was an important lesson in humility and team work.
The fact that I was learning so much from Jennifer’s family didn’t go unappreciated by me. The teacher is taught by the student. Or – more properly – we were both students. We were in this together.
Years later in my academic career I did some research in what mattered to parents that were being told bad news. At the time there was a fair amount of disagreement about the proper way to do this uncomfortable and important task. Our research was based on parent preferences and we learned a lot. In the same research in different settings we kept getting the same message: What parents want is for physicians to care. Doctor knowing answers was way less important.
So Jennifer cared about me and I cared about Jennifer and now, more than 30 years later, that is what I value most. The research confirmed Jennifer’s lessons. We were in it together and when she died I lost a friend and a colleague. I was big and went to Harvard and she was small and was just learning to read. Who was more important in this relationship? I really honestly don’t know. The older I get the more I think there is less and less that distinguishes the roles of doctor and patient. We are in this together, and like all good relationships it depends heavily on reciprocity. We bring different things to the collaboration and that is good. Being there for each other is what matters. She was there for me. I am amazingly grateful for that. I was there for her. I am amazingly grateful for that.