“You are entering the medical record of a deceased patient. Are you sure you want to proceed?”
Seeing this dialog box, which pops up on the hospital’s electronic health record program, is never a surprise. On the list of patients whose charts I’m supposed to review for my summer research project, the deceased ones are highlighted in grey, setting them apart from the otherwise black-and-white list of names and medical record numbers.
When I first looked at the list, I was surprised at how few greyed-out names there were. After all, my project was to study the long-term effects of being born with only half a heart, and the complex series of surgeries, usually completed before the age of five, designed to reroute the circulation in an attempt to create a brand new kind of human who only needs one ventricle to survive. A generation ago, the whole list would have been grey — the names of babies who died within days of being born, turning progressively bluer until eventually their labored, frantic breathing stopped altogether. Maybe the parents took comfort knowing that there was nothing they could have done, that their child never had any real chance at life, that his or her fate was decided when he was just an embryo.
But instead, of the 200 names on my list, about five of them are highlighted in grey — five patients whose records show me that ominous message. It gives me pause because, for the most part, the work can get pretty monotonous. From my overly-air-conditioned office cubicle in the hospital, which feels miles away from any actual patient care, I type in a name, click on the chart, pick out the relevant information and scrawl on a sheet. Height and weight. Zip code. A list of medications. When it’s done I add the sheet to an ever-growing pile, cross the name out on my list, and move on to the next one.
But whenever the box pops up, when I need to take that extra step to say that yes, I am sure I want to enter this record, the task becomes less automatic. The record itself looks different: the header is grey, the patient’s dates of birth and death listed like a digital tombstone. And my work, too, has a few additional steps, because although I need the same information about this person’s life as the others, I also need the date and cause of death.
The box struck me the first time I saw it, mostly because of its phrasing — I wasn’t just looking at the record, but “entering” it, and seemingly doing so at my own risk. “Beware all ye who enter this EPIC chart.” But after the first one, this sentiment rang all the more appropriate. To enter the record and read through the letters leading up to the patient’s death, is not just an academic exercise; it is to read an account of one family’s darkest day. A family I’ve never met, but whose pain resonates even as it is filtered through layers of medical protocol. The dates of death jump out me: one patient died on his twenty-second birthday, another on Christmas Eve. One died just two days after I reviewed his records for the first time, and when I went back in to add the new information about his death, the message popped up. It seemed cruel to ask, when his family, his friends and his physicians were freshly grieving, if I wanted to be there. Of course I didn’t.
The sequence of notes included in these records, which come from the patient’s various appointments, are difficult to read. Letters from a year before, report plans to go to college and major in psychology. Then a letter requests a medical leave of absence. Then, there are various accounts of deteriorating health: failed medications discontinued and replaced with others, in hopes of a miracle cure; descriptions of liver failure and all of its grisly complications; a letter denying a request for a heart transplant, saying the procedure would be too risky, which once the patient has died feels deeply ironic; the results of daily blood draws, their values deviating further and further from normal, charting the patient’s decline.
This data is valuable for my project, but reading through the stack of charts is difficult because unfortunately, even the ones whose names aren’t highlighted in grey, who don’t have that terrible box pop up when I click on their charts, are not perfectly healthy. The treatment causes problems in just about all of them, and catastrophic ones in some. These unlucky kids lose proteins through their intestines, and cough up frightening, tree-like casts in the shape of the deepest branches of their airways. Some get revisions to their heart surgeries in an attempt to fix these issues, and a few need new hearts altogether.
As part of my project, I was able to meet some of these patients during weekly clinic, coloring in their records with faces and personalities. On the same day, I saw a kid suffering from refractory complications for which the doctors were rapidly running out of treatment options, and another who looked entirely normal until I noticed the deep scar running down his sternum, a remnant from the three times in as many years that his chest was sawed open and stapled shut. I wonder how their families feel, knowing the vastly different futures their kids could have had. I know the parents of the healthy ones are grateful; I wonder if the parents of the unhealthy ones are angry.
We hope that the answers to who does well and who does not, who gets married and has children and who winds up with a greyed-out name on the list, is in their medical records, lurking among blood sodium levels and abdominal ultrasound results. It’s one of those frustrating, as-yet-unanswerable questions that medicine presents, like why some smokers live to be 90 but some 30-year-olds die of cancer, why virtually everyone has some kind of minor birth defect but only some wind up with just half of their most vital organ. On days when the research begins to feel dull, when I look through the window at the summer sun and wish I were outside doing anything else, I think of the kids I met in clinic last week, and the ones I’ll never get the chance to meet. And so, I keep scrolling through the charts, copying down their information, in hopes that the next generation of single-ventricle kids might be better off than this one.