Although I’ve been practicing oncology for several years, there’s no question that my work in the online space with so many patients and family members has been a different kind of experience, one that has shaped my perspective of how I interact with patients in my own clinic now.  More and more often I’m seeing the distinction between the perspective of the oncologist or medical team and the patient/family.  I’ve been spreading the gospel of the evidence from clinical trials, which is the word from on high to oncologists, but I should also share some examples of where I’ve recognized where I and likely other oncologists haven’t been able to “hear” what patients are saying.  This educational website should be in two directions, and here’s some of what I’ve learned.

   The first issue is that doctors generally focus on being evidence-based, which is sometimes ideal, but it’s sometimes limiting.  A huge amount of what I write about at OncTalk is new information, new data, and the changing world of what our data-driven standards should be.  My sense is that many patients and family members are very interested in this — the facts from clinical trials can help us select the best options among many we might consider.  But that’s only when you’re choosing among competing options.  As the choices become more limited and the benefits of our “proven” treatments in cancer become less impressive, many people don’t want or need the proof, just a semblance of hope for benefit.  I see patients and family members on websites (here and many others) who are seeking any promising trial or other treatment off protocol, and it’s pretty irrelevant to them if that therapy hasn’t been studied in large clinical trials and irrefutably proven to improve survival.  The burden of proof isn’t on the novel treatment when your doctor has said there’s no further therapy likely to be helpful.  People have been wildly interested in DCA, or new EGFR inhibitors, or RFA, or anything that might push us beyond where we are now, and I and other oncologists are largely off-base by saying that they’re not of enough interest until they’ve proven their value.  To some patients, any new option with a meaningful glimmer of hope may be worthy of a flight to another part of the country or world. 

   I should recognize the reality from the world of complementary medicine and supplements, which is growing all the time.  Most often the manufacturers don’t provide a lot of evidence, but just a few intriguing cases of people who have beaten the odds.  I and my data-driven colleagues who say, “the plural of anecdotes is not data” are thinking in a different framework than the huge proportion of the population who don’t care: people are voting with their feet, and they’re saying that they don’t need hard evidence. 

   There are many times when I am the evidence-based judge of what’s optimal treatment, and there are times when I and other members of our medical team push the envelope, hoping to give a patient “the benefit of the doubt”.  The lung cancer conference that I and my colleagues hold in April highlights tough cases, many of which include situations where we went beyond the standard of care, based on some combination of a good rationale, a hope and faith that the patient could do better, and a recognition that the existing options were just lousy.  In some of these cases, a few outside faculty experts from some great cancer centers were critical, saying, “what evidence do you have that you should use this approach?”, and it was often an extrapolation from what we knew to what we hoped/thought might work.  In truth, I think we all (doctors and patients and families) would benefit from taking a step back and realizing that while we all want to use the evidence to do the best we can for patients, it’s not wrong to identify enough with the patient to want to believe the textbook is wrong and take a leap.  So I shouldn’t be haughty in saying that people shouldn’t get surgery after a good response for stage IIIB NSCLC, or that certain drugs don’t have a clear role as 3rd of 4th line therapy for advanced lung cancer (NSCLC or SCLC).  Many of these things haven’t been tested enough to say that they shouldn’t be done.  And the outside experts at our conference who dismiss treating beyond the standard of care didn’t really have the experience of sitting with a patient and their family and saying, “Sorry, the standard of care is no more treatment.  Good luck with that.”  I know that most of these experts recommend all sorts of treatments that stretch beyond the evidence.  That’s OK; there’s a difference between saying what someone should do as an abstract concept and making recommendations when you’re actually with the patient and know them personally. 

   I’ve also learned that most people want the most aggressive treatment that is feasible, not an equivalent but less intensive strategy (”when in doubt, cut it out”).  Several weeks ago, I discussed the management of stage IIIA NSCLC that could potentially be treated with surgery (usually preceded by chemo or chemo/radiation) or with chemo/radiation and no surgery.  Outcomes are quite similar either way, but members here responded two to one that they’d prefer surgery.  Every week patients and family members ask about having surgery for advanced NSCLC, and there’s a great deal of interest in approaches like radiofrequency ablation to treat metastatic cancer.  I can respond that there’s no good reason to intervene against a few areas of metastatic disease when new areas will appear, but I know I’m a wet blanket to many people who just want to treat cancer everywhere they can see it. 

   Finally, I’ve come to recognize that many patients don’t want a presentation of a whole range of options to be dumped into their lap, for them to decide among.  Over the past several decades, medicine (American medicine, at least) has moved from a paternalistic model in which the doctor said what to do and the patient does it, to a model in which doctor and patient as a team decide the best approach.  Great, but you probably won’t be surprised to know that I can present a bunch of options, with their risks and benefits, then ask the patient what they’d like to do, and have them say, “you tell me — you’re the doctor!” (often with not so subtle tone that I asked a pretty dumb question).   Many patients don’t want the responsibility of deciding among several choices but instead prefer to have a doctor who knows how to proceed and leads them with a firm hand (this is often a group of people less likely to search through the internet studying treatment options).  Different strokes for different folks: the tough part is that some patients want to have their hands on the wheel and be a participant in the thought process, and others just want to be told what they need to do and pray for the best.  Neither approach is a bad one, as long as doctor and patient can get in synch.

   Anyway, I wanted to highlight here some of how I’ve been affected by spending more time answering questions and hearing the concerns of so many cancer patients and family members over the past year.  I think doctors and patients are sometimes speaking a different dialect, or at least come to the office with a very different mindset.  I was thinking of writing a book, Oncologists are from Mars: Patients are from Venus, but I think I might have a legal battle on my hands. 

   As always, I’d welcome your thoughts.