Making sure that patients receive information in a way that facilitates their understanding and leads to them making better decisions, is, if you will, a mission I am on. Compared with saving the planet or preventing Armageddon, mine is a relatively modest mission, but a worthy one nonetheless.
Some go on a mission clad in shining armor, either real or metaphorical, like that of Daniel Craig's James Bond, forever immune to injury. And even sapphire-eyed Craig, CNN.Com reported, endured eight stitches, a severed fingertip and several bruised ribs while performing his own stunts in "Quantum of Solace." Though the dashing Craig always looked unscathed, save but the odd bruise, which vanished by the next scene. Perhaps this is why I left the theatre long before the film ended. Sorry Daniel. Sapphire-eyed or not, there was only so much I could suspend my disbelief.
Unlike Craig's Bond, or any other Bond, for that matter, I come to this mission with no armor whatsoever, not even the presumption of one. If anything, I come to it with my pronounced vulnerability and my rage at the fact that others are even more vulnerable than me.
Some go on a mission with evangelical zeal. Some people seek revenge. Others have known all along this is their calling. With others still, the mission sneaks up on them. Like a back row dancer, patiently dancing where no one can see her, getting moved to the second row, then the first, then one night being asked to take on the leading role, ending up in the spotlight.
The mission of making medical information comprehensible snuck up on me, and this is how it all began.
I was getting my PhD in psychology, studying ways for improving expert and lay judgment. Ilan Yaniv, who was one of my professors, asked if I might be interested in teaching a decision making course to Masters' students of genetic counseling at the Hadassah School of Medicine, affiliated with Hebrew University. I accepted emphatically. Then realized I had no idea what knowledge my future students would benefit from the most.
The best, the only place to start, was to go see what genetic counselors do. This meant overcoming my first obstacle, one that everybody coming to the medical center has to encounter - to find parking. Like defeating the dragon watching over the treasure cave, one could not come to the hospital without meeting this challenge. Dropping the patient off at the entrance and hoping to reunite after you located a spot and navigated back to the building. Inevitably arriving late to the labyrinthine corridors, and feeling tense even before they opened to door to the consultation room.
Such was the case with the couple coming to meet the genetic counselor the day I sat in on consultations. The father was an albino, and they were both hearing impaired, so they brought an interpreter. They also brought their two year old, for want of a babysitter. The counselor introduced me and asked if it was ok for me to attend the session. They had just braved the sketchy parking lot and the serpentine hallways. They were out of breath. Sure, they said. Whatever.
The wife was pregnant and they wanted to know what to expect when the newborn was delivered - what were the chances that he or she would also lack pigmentation and/or be deaf. They did not mind either way. They just wanted to know. And they were curious whose ‘fault' it would be, mom or dad. Seemed that it mattered to the mother in law, who constantly blaming the husband for the child's lack of hearing.
The genetic counselor was just the kind of health expert you want to meet - highly professional, well-prepared, and caring. She already had their family histories - they had come to see her before having the first child.
She spread out the charts, paternal and maternal heritage, and methodically explained how genetics worked, started with the chromosomes and the genes. None of this was redundant for me. I had not been a science major, and did not take a biology class since, I believe, the 9th or 10th grade. It has been a while. Remembering which was the bigger unit, chromosome or gene, was not trivial. I had to dig in my memory and figure out there were 23 pairs of chromosomes, and, well, lots of genes. Meanwhile, the counselor was explaining this to the interpreter, who, in her turn, would explain it to the couple. The interpreter, black roots showing in her dark blond hair, seemed no less bewildered than I was. And information kept coming in, which she had to convey to the couple using sign language. I could not help but wonder what they would say if we asked them to translate back what they've been told. The child was antsy, going back and forth from the brown haired mother to the white haired dad in the small room, filled with filing cabinets discreetly displaying case numbers, not names. The couple was there. The mother rummaging in her bag for a snack to give the little one. The father bouncing the child on his knees. They were there, but they were not really listening, and it wasn't because they had hearing aids. It was because they got lost fairly early. You could see it in their faces. Chromosomes, genes, dominant, recessive - lots of words, lots of terms, but not a lot of meaning.
They wanted the bottom line, and they soon got it. The counselor, who had all the patience in the world, examined the family histories and reached the conclusion that deafness was passed by the mother's side of the family. The father's condition was recessive, which meant passing it on to the newborn would require for both parents to be carriers of the specific gene variant. The mother, however, did not seem to have this variant in her family. Her deafness resulted from a different variation, one more easily transmitted to an offspring. If the baby could not hear, dad was off the hook. All this mother-in-law animosity had been in vain. This point certainly got across. But would they be able to repeat the explanation? Did they truly comprehend what was going on in their DNA? It was hard to tell.
Couple, antsy child, and interpreter spent less than an hour with us in the small room, but when they left I was drained. It was knowledge they sought, and they received it from one of the best genetic counselors. Yet what did they make of it? What of all that's been said to them, via interpreter, was understood and lingered? It had nothing to do with being hearing impaired or albino. It had everything to do with being a patient. For all my fancy graduate training, I did not expect to have fared any better than they did. And the added layer of concern for the baby certainly could not make things easier.
Knowledge doesn't just pour out of the medical system and into the patients' minds, I realized. It has to be understood, processed, dealt with emotionally. It was the counselor's job to explain and the patient's job to get it. In the world of James Bond, this could be harder than nailing the villain. And, unlike Craig's omnipotent James Bond, patients needed every bit of help they could get.
Leaving the medical center that day I still thought I was just going to teach decision making to genetic counselors. I did not realize that making medical information comprehensible was going to take over my research, my interest, indeed become my vocation. I did not realize it, but there, right there, was where my mission began.
Due to technical problems, this was not posted on March 2nd, Daniel Craig's birthday. Sorry Daniel, I haven't forgotten.
