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Hellos and Goodbyes for the Month of April
As another month draws to a close, it’s time to thank Drs. Pinder and Ramchandran for their great help throughout March. And don’t worry: we’ll all but beg them to return in the next few months. I know they’ve found this time gratifying and enjoyable, so I’m optimistic I won’t have to do much convincing.
And with April starting, we can also welcome back some beloved favorites as well. Dr. Ramchandran’s colleague at Stanford, Dr. Stephanie Harman, will be returning to provide her expertise on supportive care and symptom management. And our longtime friend Dr. Weiss has returned from his time working on other activities, including his recent adventures caring for people in Honduras.
A Short List of (Belated) Guidelines for the GRACE Discussion Forum
I think that for all of the educational content we work to provide on this side of the GRACE website, the Q&A forum for many people is the most valued part of the GRACE experience. It has its own community and tone, which I think are generally very welcoming. Though we do the best job we can offering helpful answers as well as a friendly experience, there are sometimes limitations in what we can provide. It’s long past time for me to formally offer what I’d consider to be the guidelines that aren’t necessarily intuitive. We should know that we should refrain from attacking each other, but here is the short list of how to be the best forum citizen you can be, all based on a goal of trying to provide as much information to as many people as possible, within the confines of limited time. And by encoding this short list, we’ll hope that people never take it personally if we run up against these guidelines.
A Little Local History: Why GRACE?
It’s been more than 5 years since I thought about the concept that has evolved into GRACE, such a long time that the “Why?” is probably lost for all but the few who have been following along from nearly the beginning. So for those of you who are curious about why I and other medical professionals would work toward doing this, here’s the story.
The Communication Gap in the Oncology Clinic: What Docs Think They Say, and What Patients Think They Hear
It’s the premise of many jokes and nearly every old episode of Three’s Company: there are (at least) two sides to a conversation, but it often seems that a mutually shared conversation is perceived very differently by the participants. It’s certainly the case in the cancer clinic that there can be miscommunication between an oncologist and the patient and/or caregivers, in which the doctor believes they’re conveying certain information and the person on the other side of the conversation either doesn’t hear that at all or hears something very different. An interesting study was just published in the Journal of the Clinical Oncology from a group of investigators in the UK who studied conversations between cancer patients and their physicians.
The study by Jenkins and colleagues reviewed the results of comparing the recorded conversations and accuracy of recollection of what was and wasn’t covered in a discussion about potential enrollment on a phase I study. The study included 17 physicians, 14 of whom having had some actual training in communication, speaking to 52 patients who had their discussions recorded. After the clinic visit, both the physician and the patient offered their recollection, in a structured interview, of whether various aspects of the consent process were included during the visit.
(click on image to enlarge)
Dr. David Agus on a New Strategy Against Cancer
In my prior post I noted my increasing pre-occupation with TED Talks, which cover a wide range of topics, but there is also a TEDMED conference each fall that is dedicated to emerging, cool topics in health care. Overall, there haven’t been a lot of presentations on cancer, but there was an interesting one at last year’s TEDMED meeting by Dr. David Agus, a medical oncologist who is primarily a researcher in cancer genetics and proteomics at the University of Southern California. His presentation on a new strategy in the war on cancer is very thought-provoking, even though I think he overstates a few things about the miracles of cancer genetics, as someone who started a for-profit company selling the concept, and he is glaringly incorrect when he states that we really can’t treat cancer once it’s metastatic. Still, his is an interesting and thought-provoking talk. I agree that we are moving toward a fundamental shift in our thinking in oncology that may ultimately move us from cancer primarily being categorized by the organ/cell of origin to one that is dominated by the genetic defects of the cancer cells.
The Downside of Freedom of Choice (and More Hope)
I recently watched a great lecture by Dr. Barry Schwatz about the paradox of choice: specifically, that while we would intuitively believe that more choice, more options leads to more freedom and happiness, this very freedom leads to our dissatisfaction. I’ll mention parenthetically that this is one of the hundreds of free “TED Talks” available free online, TED being a remarkable interdisciplinary conference that stands for Technology, Entertainment, and Design. I’d recommend exploring some of the many great, artfully delivered presentations there.
But this specific talk by Barry Schwartz had the premise that we are actually made less happy by more choice. First, because having many, many choices can lead to paralysis: it’s fair to be able to choose among 3 choices, but when you suddenly have a dozen options, it’s less liberating than anxiety-producing. Second, choosing one means not choosing everything else, which almost invariably leads to a person left speculating and perhaps haunted by the thought of the path not taken, wondering about what further options may remain out there undiscovered. Third, more choice is typically associated with greater expectations for good results, so we can now ratchet our hopes to the point where you can all but guarantee being disappointed. And finally, more choice means that people now have the ability to blame themselves for their disappointment rather than a system that they couldn’t control.
“What Would You Do If It Were Your Wife?”: The Gulf between the Data and Real Life
In the podcast I just posted that involved a discussion with Dr. George Blumenschein, medical oncologist at MD Anderson, Dr. Wally Curran, radiation oncologist at Emory University, and myself, we spoke a bit about the challenge of the art vs. the science of medicine. GRACE member David Fourer added a comment highlighting the importance of this acknowledgment, and I think this merits further discussion.
There is a fundamental difference between discussing a person’s situation in the abstract and actually working closely with the patient in the exam room, part of a patient/doctor relationship. The issues that I and the other faculty discuss focus largely on the evidence and the prevailing standards of care, but that only gets you so far. What strikes me is how much every oncologist I know, myself included, deviates from the data-driven standards — but that’s not a bad thing. It’s just that it’s not fair for one physician to comment impartially about the evidence while another is managing the actual patient and situation. That’s apples and oranges. We (oor patients) sometimes try to bridge the gulf by ending a case presentation with, “What would you do if it were your wife/sister/mother?”, recognizing that the evidence only takes us so far.
It’s all a matter of perspective
A couple of months ago, I wrote a highly critical post about a trial by German company Boeringer-Ingelheim, in which I noted that a clinical trial in which patients with an EGFR mutation would be randomized to standard chemo or their irreversible oral EGFR inhibitor Tovok (BIBW-2992) seemed to be so problematic as to border on unethical. This was because we’ve seen converging evidence that patients with an EGFR activating mutation are very likely to experience far more benefit from an oral EGFR inhibitor like Tarceva (erlotinib), Iressa (gefitinib), or presumably Tovok than conventional chemotherapy, as shown in several trials at this point.
Because this question seemed to be answered already, I questioned whether it would be feasible or appropriate to randomize half of the patients with an identified EGFR mutation to be assigned to what we can almost certainly say will be the inferior treatment as first line therapy. I still feel that frustration, but today I spoke with a representative of the company who reminded me of how things look from their side. At the present time, the standard of care in the US for initial therapy, and therefore the comparator for any treatment that a company would like to have considered as a new treatment in that setting, is standard chemotherapy, or chemo with Avastin (bevacizumab). Because the trial needs to be done globally, and because Avastin isn’t considered a cost-effective value in much of the world, chemo alone becomes the least common denominator (cisplatin/Alimta (pemetrexed) in the case of this trial, a perfectly fine choice). What we as investigators would really like to know is whether Tovok is significantly better than the EGFR inhbitors we have available already, so the most relevant trial from an oncologist (and patient) perspective would be a randomization of patients with an identified EGFR mutation to Tarceva/Iressa (whichever is available where the patient is being enrolled) vs. Tovok. But that trial can’t be done with the hope of Tovok being approved because the FDA requires a new drug to be tested against the decreed gold standard in that setting, and right now the FDA is a few steps behind what is really the best treatment. This also underscores that we’re now in the uncomfortable position of having the best treatment for someone with a known EGFR mutation be something that isn’t technically FDA approved in that situation — and there’s no question that some insurance companies will therefore not cover what the vast majority of experts would consider the best treatment for that person.
How Has GRACE Helped You?
GRACE has two main ways to raise money to continue our programs: support from our members and educational grants. We will continue to seek contributions from our users, but as we write grants to seek support for our educational programs, we would benefit from any indication that the information GRACE provides can have an impact on people’s lives. That may be learning about a clinical trial, or a treatment to discuss with your doctors, or some discussion of how to manage troubling side effects, reassurance that the treatment you are on makes sense, or whatever. So we’re going to seek your input in two ways.
E-Patients Revisited: Writing a Story on a Growing Movement
Last year I wrote a summary about e-patients, a population that people here should be aware of because they’re part of it, whether they know it or not. E-patients are the new breed of patients, and the caregivers who are part of their “team”, who avail themselves of information and support online to become empowered, educated, and enabled to become direct participants in their own care. Oncologists, like physicians throughout all aspects of medicine, are gradually changing their practice patterns as medicine’s old paternalistic model (doctor knows best, “whatever you say, doc“) gives way to the doctor/patient relationship being more of a partnership in which the physician’s role is to present options with their associated anticipated risks & benefits rather than simply telling a patient what to do.
I’ve been asked to write a summary for a physician magazine about the e-patient movement and to describe the ways, good and bad, that the online world is changing how patients interact with their oncologists. I’ve also just recently been asked to speak at the FDA in a couple of months about a similar topic. And though I have my own ideas of the sketch of what I’m planning to write, I wanted to give folks here an opportunity to note things I may be missing, and in general how you feel about “oncology 2.0″, in which the world of online information is changing the practice of oncology.
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