A few years ago, I had the opportunity to meet Alan Alda, the actor of MASH fame. I met him and Arlene, his wife, while having lunch at the home of one of their daughters. The lunch meeting served to provide a discussion about dyslexia and some of the research that I had done in this regard. Later on, in the evening, we would all travel together to a theater where Alan would ask me and others questions as part of a fundraiser benefiting a special needs school. Unassuming and always wearing a big smile, Alan told me that one of his main preoccupations was communication, that is, making sure that lay people understood the verbiage of science.
Figure: Fundraiser for dyslexia with Alan Alda (sitting in the middle). I am seated at the extreme left.
I learned a lot from my experience with Alan and it got me started thinking about how much of my conversations with parents of autistic children was truly listened to or understood. Under a casual setting, talking to another person is straightforward and thoughts are easily conveyed; there is no pressure and people feel relaxed. By comparison, the doctor’s office, where you first talk about a diagnosis, provides the setting for a momentous and life-changing occasion. Am I going to be the bearer of bad news? How will this encounter color a relationship that may last for many years into the future? Emotions run deep on both sides of the divide; physician and parents.
I once read a book by Jane Johnson where she offered vignettes of patients describing their emotions when they first received a diagnosis of autism. The series was biased as it dealt primarily with high functioning adults who were searching for an answer as to why they always felt as being different. I think Temple Grandin best described the alienating feeling when she thought of herself as being an anthropologist on Mars. In Jane’s book, invariably upon receiving a diagnosis, patients felt like a weight had been lifted off their shoulders. At least now, they had both an explanation and an opportunity to make things better. A diagnosis for them meant accommodations at work and a larger expanse of social support. A few of the cases in Jane’s book, however, were devastated by the diagnosis of autism. I think the manner by which a physician communicates a diagnosis, and other health related information, makes a world of difference for the patients.
Possibly the main problem in guiding a physician’s conversation with patients is that there are no scripts that serve as a template. Every instance is different. Personally, I try to communicate optimism, avoid using negative words, and offer reassurance. At the end of the appointment, parents should know that they have an ally on their side. Sometimes, just being there, as a physician and a friend, is reassuring. Unfortunately, in many instances, I cross the line in becoming more of a friend of the family than a physician. If they are anxious about something, I also become anxious. A Psychiatrist would call this countertransference and it denotes my emotional entanglement with the patient and his/her family. Indeed, when I need to communicate bad news, I feel like a Grim Reaper. I understand that bad news makes them feel anxious, scared, and uncertain. When I communicate good news, on the other hand, I think of myself as a social worker of the soul. This social worker does not wear spandex and a cape but has the superpower for helping improve the collective well-being of families.
In order to make a positive difference in the lives of patients, my conversations never end with a period. I rather think of them as ending in a colon or semicolon, that is, something to be continued. Invariably I will ask families to put their questions in writing and, later on, to bring them to my attention. Many of their questions have given rise to some of my blogs at corticalchauvinism.com. In our discussions, I usually try to involve as many members of the family as possible. In times of silence, it serves to paraphrase what you have been told to see if you truly understand the nature of the conversation. I am also attentive to the possible development of coping mechanisms, especially those that are negative and ultimately unhealthy. In the end, the most important thing for the physician to do is to validate the thoughts and feelings of patients and to reduce the feeling of isolation that they may have.
“Medicine is an art whose magic and creative ability have long been recognized as residing in the interpersonal aspects of patient-physician relationship.” Hall et al., 1981
Casanova MF. Spirituality in Children
Hall JA, Roter DL, Rand CS. Communication of affect between patient and physician. J Health Soc Behav. 22((1)):18–30, 1981.