A couple of weeks ago, when I had a serious bout of insomnia, I stayed up until past two o’clock in the morning watching All The President’s Men. It’s one of my all-time favorite movies.I noted the absence of tape recorders as the fictionalized Woodward and Bernstein went about their investigations. This was, of course, 1972, and microcassette recorders weren’t available for $19.99 at your local Staples. It gave me a chance to think about how much easier life is given our ability to record experiences as they happen. We have, as a society, gone far beyond just tape recorders. They’re actually considered quaint. What, with everyone putting everything on the Internet as a podcast or YouTube video, or people recording things with their cell phones, the little cassette recorder that I bought back at the beginning of medical school is practically an antique.
I thought about this long-lost tape recorder when I came across an abstract of an article that appeared recently in the British Medical Journal regarding audiotaping of neonatal consultations. The article, entitled “Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised controlled trial” (BMJ 2007; 334;28-31) tested whether providing mothers of children in NICUs with audiotapes of their conversations with their doctrs helped the parents to recall information and whether or not these tapes helped with their psychological wellbeing. It is clear that parents of children in NICUs, and in fact many parents with children who are critically ill, often do not remember all of the information that they’re bombarded with.
In my experiences, this is also quite true on the pediatric oncology service – at least in the days or weeks immediately following a new diagnosis. One of the things that I tell parents at the time of diagnosis is that they will likely not remember much of what I say after the words “I think your child has (insert cancer diagnosis here)”. We compensate for this on our service by repeating things over and over, as well as by relying upon many other teachers, including nurse educators, primary nurses on the wards, and primary nurses in clinic. By the time a child has reached the end of their first few weeks of chemotherapy, their parents have had a pretty good education in the the nuts and bolts of caring for a child with cancer. By the end of the first few months parents are pretty savvy, and by the end of a year many know as much about their child’s disease as any of the hospital residents.
That being said, the initial few days are usually a blur, and of course that’s when the “big talk” takes place. By “big talk” I mean the initial informed consent discussion to initiate therapy. We call this the “Day One” talk where I work. It usually is a formal sit-down talk between the family (and whoever the family wants present), the patient’s primary nurse on the ward, the pediatric oncology fellow covering the inpatient ward, and the pediatric oncology attending. Learning how to conduct a Day One talk is one of the most important things learned during the first year of fellowship, and it comes from watching and listening to attendings give good (and sometimes watching and listening to not such good talks). One also learns a great deal from seeing how different families react. Some are so antsy to start treatment that they don’t seem to really want to sit through a 90 minute discussion of the different side effects of the different medications, the various risks and benefits, and the minutae of treatment. They want to sign on the dotted line and get the first dose of chemotherapy in. I don’t think that these families are nonchalant about the details of their child’s care – rather, I think that the amount of information floods an already busy switchboard.
Some families, on the other hand, want every detail and then some. Some bring aunts or uncles or other relatives who have backgrounds in medicine. Some are meticulous note-takers.
A couple of years ago, when I was a relatively new 1st year fellow, a family brought a tape recorder into the room and set it down right in front of me. I can’t remember whether or not they asked me if I would mind being taped (I think they did), but I remember being weirded out by it and telling them that I’d prefer not to have my every word recorded. In the few minutes that I had to react to this, I felt a combination of fear and uncertainty. I wasn’t sure that I was going to do a 100% perfect job (being relatively new at the whole oncologist thing) and I didn’t want that to haunt me at some point later. To be honest, I was afraid that something catastrophic would happen to the patient – something that I wouldn’t have covered in my consent discussion – and that the next time I saw that tape recorder it would be in the hand of a stern-looking malpractice lawyer.
Today, a couple of years older, wiser, and more confident in my understanding of my chosen profession, I believe that I would want that family to record the discussion. In fact, looking back, I wish that all of these types of conversations were recorded. I’m almost surprised that they aren’t, especially when one considers the amount of thought that we give to the Day One talk.
Turning back to the BMJ study of mothers in the NICU, the initial conversation (similar to our Day One talk) as well as subsequent conversations deemed important by the attending neonatologists, were taped and the mothers received a copy of the tape. The results of the study showed that 91% of mothers listened to the tape after one week and 95% listed at least once over the first four months. The mothers who received tapes of these conversations were, as you could imagine, more likely to recall the different diagnostic tests, treatments, and outcomes that were explained to them. There were 6 (of 98) mothers in the control group – those who didn’t receive a tape – who were unable to recall any information from their discussion with the neonatologist.
After reading this paper, I immediately wondered whether or not this has been tried in oncology. It turns out that there’s a fairly substantial literature for the use of taped informed consent discussions in adult oncology. It also turns out that many institution’s websites that discuss clinical research trials recommend patients taping the informed consent discussion, including UCSF, MD Anderson, and the website for the National Cancer Institute.
It also turns out that taping “Day One” talks has been looked at, at least once, in pediatric oncology. There was a paper published in the Journal of Pediatric Hematology/Oncology entitled, “Audiotaping Communication of the Diagnosis of Childhood Leukemia: Parents’ Evaluation” (J Ped Hem/Onc 2003; 25:5) that, while not a randomized study, was notable for the fact that the authors collected their data from January 1997-December 1998. The study was based in Italy, and my review of the medical literature (a cursory review of “related articles” in PubMed) didn’t find any US based studies.
I’m curious as to how this would go over here in the US. I would bet (although I don’t have any data) that many parents of children with cancer would have appreciate having a tape to review at later date. I would also bet (again, without any supporting data – just a hunch) that there would be very few instances of these tapes being used to prosecute a physician in the event that the patient suffered a bad outcome. Given the remarkable problems in health literacy (problems that involve both health care systems as well as patients) one would think that a tool as simple as a tape recorder would be more widely used for complex discussions such as informed consent for chemotherapy. I’m curious what Paul Levy over at Running a Hospital would say about this small idea. I’m also curious to hear what any parents of pediatric oncology patients (or oncology patients themselves) would have to say.
I think that now, being a little more experienced, and a lot more comfortable with the words that I use, I see the benefits to this technique to far exceed the risks. Moreover, I believe that offering parents the opportunity to tape one’s important discussions with them telegraphs a message of confidence and trust, and would go a long way to establish rapport at a very important moment in a family’s life.