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Changing Roles and Changing Expectations in the Patient/Physician Relationship

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Last week I wrote about a new molecular marker in lung cancer called ROS1, which is just beginning to be studied in lung cancer and associated with promising responsiveness to XALKORI (crizotinib). What I didn’t mention in my post was that I learned about it from a discussion thread, started by a patient. While it’s not unusual for me to have a knowledgeable patient with prostate cancer (another cancer I see and treat frequently) bring a report from a meeting or a new article that sends me back to the computer to learn more about it, I don’t often get caught flat-footed about lung cancer, since I spend a lot of time reading, teaching, writing, and thinking about it. And yet, I’m sure this isn’t the last time I’m going to be a half-step behind an astute patient, even in a subject that is a major focus of my work.

What I also didn’t mention is that I felt a little humbled and defensive about that. This is despite the fact that my TEDx talk from earlier this year was centered on the theme that there has been such an explosion of new information (a very good thing) and such democratization of information via the internet (also a very good thing if consumers of the information – patients, caregivers, and docs alike – can distinguish between credible and dubious sources) that it’s clearly time to move from an old model of doctor as the wise filter of all medical information to a new model of physician and patient sharing information mutually. This new bidirectional model of information recognizes the value of patients providing information to their own physician, obtained from their own research and online communities like GRACE. I state in my talk that no doctor can know everything worth knowing about a topic and that this new, more open and bidirectional model provides the benefit of collective knowledge rather than the bottleneck of what individual doctor might happen to know.

So while it was a little humbling, I need to heed my own words and recognize that it’s not a shortcoming to learn new things from patients and caregivers rather than only from other experts – very good information can flow from many sources. My expectations need to change. But by the same token, it’s important for patients and caregivers to know that their doctor may not be as well versed about the newest molecular markers and investigational agents as they are. I focus on just a narrow subpopulation of cancer patients and can’t know all there is to know about that field; the general oncologists and other physicians treating a broad range of patients have an impossible task of trying to keep up with all that they need to know about a huge variety of increasingly complex topics.

The concept of the all-knowing physician was always a myth, even if it was far more believable in the era of Marcus Welby, when there was much less actual medical information in the world, compared to now (the show House, MD is laughably implausible and has a team of writers scouring the medical literature for obscure problems to cover that no one doctor would ever know about). Today, it’s time to recognize that the doctor may well know less about a specific issue than their patient focusing on it far more, but along with that, for patients and caregivers to no longer have the expectation that their doctor will invariably know more if they are really competent. If medical care is going to truly work as a collaborative effort, as I would argue it needs to, both patients and physicians need to get used to the growing importance of what the patient and caregiver will bring to the discussion.

I did hear from one doc who said that 90% of his patients are illiterate and that he would be thrilled to have patients more engaged in their care. I know that I and many other oncologists I work with are very gratified to know that their patients understand the anticipated benefit and risks of the management options, so that they can act as truly informed patients.

I welcome your thoughts here, particularly around the question of whether the doctors you’re working with feel threatened by patients taking a more active role in knowing about their options and asking about specific tests and treatments, or whether they welcome and encourage a mutual discussion. The model is changing, whether we’re comfortable with that or not.


9 Responses to Changing Roles and Changing Expectations in the Patient/Physician Relationship

  • certain spring says:

    Thank you for this post, Dr West. I have been trying for some time to change my relationship with my oncologist, whom I like, and who is about my age, into something less paternalistic and more reciprocal. I’m not having much luck, however much I try to be constructive and reasonable. And it’s not confined to the hospital where I am being treated – I have now met three oncologists, at three separate hospitals, and their attitudes have been similar despite varying personalities and profiles. I do hear of good experiences with wonderful oncologists elsewhere, but they are not mine. I am longing to find someone who would be prepared to work with me, so if there are any UK-based oncologists out there with an interest in Tarceva resistance and metastatic brain disease, they are very welcome to apply … I am not proposing obscure trials or hemp extracts, all I want is some input into questions like the frequency of my CT scans and what we might do when the Tarceva stops working. I don’t actually expect my oncologist to keep up with the latest research, but I’d like to be able to present something for his/her consideration without getting what one GRACE member memorably called “The Look”.

  • kej says:

    Hear, hear

    It has taken an extemely unfair bite of my strength to make it clear that I expect my husband and myself NOT to be treated as “speaking dogs”, as another GRACER poetically expressed the onc’s perception of a patient’s role.

    I am not sure the oncs we are dealing with at the moment, feel directly threatened, any longer. In the course of these past 22 months, trials and scientific research in general, have only been mentioned on my initiative, however.

    As I have a hard time imagining that considering a trial really has not been relevant a single time during this, I wonder what it feels like, when I mention it as caregiver. I have given up reading their faces, when it comes to this. But I have seen that it has become easier for me to make them listen to and act upon my observations and suggestions.

  • certain spring says:

    Re-reading my comment, I wanted to make clear that these are all experienced and conscientious doctors who are helping a lot of people with cancer, including me. My frustration is that the collaborative model doesn’t seem to have entered their orbit yet. I suspect it has a lot to do with the culture of medical school and the way they were trained.

  • DianaJ says:

    Dr. West: Many of us here wanted you to be all knowing, our encyclopedia of lung cancer. The recent patient who pointed out the Ros1 trials certainly got a jump on this new mutation. As you said in your TEDX talk….things are changing too quickly for doctors to keep up with all new developments.

    I appreciate your candid posting about this.

    My medical oncologist is neither pleased nor displeased that I ask about current research and trials. As his clinic patient, he treats me with standard care at this point, though he dangles trials as still open possibilities. There is some “collaboration”, mostly in the form of his allowing me to refuse zometa or other supplemental treatment he has recommended. I feel most of my taking on an active roll is to show him I am receptive to scientific terminology and want him to treat me with more individualized care.

  • Dr West says:

    I think a big part of the challenge is that the world has changed faster than any medical curriculum or culture. In fact, the US medical training system harken’s back to the Flexner Report from 1915, when the 4 year plan was developed that still remains. Yet this predated such a vast amount of what we know today in medicine, it’s truly unfathomable.

    If we still follow the same training that we had more than 50 years before the structure of DNA was discovered, it’s fair to say that medical training doesn’t keep up with the times or the amount of medical knowledge to be conveyed. It is only the most contemporary medical training that includes any consideration of social media and how the medical world might interact with it, or how online patient communities can influence patient care in a constructive way. Doctors are now being forced to deal with social changes that are as rapidly evolving as they are monumental, and some have an easier time than others.

    kej and others, I think it’s good for people to recognize that there is generally going to be more information out in the world than the doctor can feasibly chase down if they see anything but an extremely narrow patient population. This means that yes, it will fall to the patient and their “team” of caregivers, friends, and family to search the far reaches of specific information, but that the doctor(s) need to willingly (and perhaps eventually eagerly) accept the assistance of motivated patients.

    I think it’s worth remembering that medicine has been a unidirectional model for centuries, and that these changes are remarkably fast. It will take some time for everyone to adjust.

    -Dr. West

  • Terryl says:

    Indeed, time to adjust. As a nurse I can recall several patients who were much more knowledgeable about their own condition than I was. It is indeed a humbling experience. I try to remember this when I realize I am half a step ahead of my Oncologist who is not a lung cancer specialist and has to keep up with the latest on many cancers…not just mine.

  • Craig says:

    Two thoughts about this article:

    1. The smartest doctor is no longer the smartest doctor (a “House”), but rather the doctor who knows enough to refer a patient for a consultation with the doctor who is knows the most about the specific problem the patient has, e.g., lastest research that is showing very promising results which might be applicable to the patient. If my onc didn’t know the right superdoc to send me to when I asked about more extensive cancer mutation testing, I’d be suffering today. Maybe he was just lucky, but it sure did work out for me.

    2. As a lung cancer patient I scour the Internet and news feeds for anything that might relevant to my particular flavor of cancer or anything that seem similar. This results in such a massive firehose of information that I doubt a professional physician could afford the time to read as much (even though they could read it faster and actually understand what they’re reading better). I parse the titles of hundreds of cancer news items and abstracts per week, most of which aren’t relevant or important, skim most of those, and find several each week which might become useful someday.

    It might be rare to find patients who are so ‘into’ their disease that they make researching it their passion. It can be a mixed blessing for the physician. The physician has to dampen premature enthusiasm and spend more time talking about hypotheticals that probably won’t apply or won’t pan out in the end. You may even need to develop a good network of experts worldwide to consult with or refer patients to. But it can sometimes help you become aware of things you might have not fully noticed.

    For example, how many oncologists do you think noticed the recent research into topical vitamin K3 cream to neutralize the rash of EGFR TKI’s without absorbing so much that it interferes with the drug internally? It may be premature to jump on adopting that ‘experimental’ research, but the science is very good and results seem promising enough that it might make sense to try it on patients who have the EGFR TKI rash so badly that they’d otherwise have to stop taking their EGFR TKI. (A TKI that is partly overriden by the small TKI-overriding/EGFR-stimulating action of a little absorbed vitamin K3 seems better than no TKI at all.) The concept is also supported by research in Italy on topical vitamin K1 cream in Italy although apparently that’s much less effective (which is consistent with what the K3 research demonstrated in their lab). FYI, patients can obtain non-prescription vitamin K3 cream in unknown concentrations via amazon; they might be better off joining the topical K3 cream patient trials that are starting, though.

    It’s a more challenging yet more interesting world when information isn’t a private monopoly. At its best, it’s like having a student research assistant doing the doctor’s legwork in finding possibly-relevant research that the physician might consider for the benefit of a particular patient. Of course, at its worst the doctor can be pummeled with obscure false-hope alternative medicine concepts and research that is far too premature to be of much use, … but they might already be used to that.

  • stwilkins says:

    Great post. It’s can be very hard for anyone, physician included, to admit that they don’t “know it all.” So it not surprising that such admissions by physicians are probably more the exception than the rule. It also takes an exceptional patient (or caregiver) who is will to share research findings with their physician at the risk of being rejected, embarrassed or simply ignored.

    It is important to remember that long before patients ever see an oncologist or any other specialist, they have probably seen one of more primary care physicians. As such, we patients have been socialized over the years to accept our “sick role” – a role in which the doctor’s job is to ask the questions (he/she is the expert) and our job is to answer their questions. We are not surprised when interrupted by our physician. We carry the sick role with us as we move from primary care physician to specialist…and even to most “empowered” among us are increasingly reluctant to speak up as the severity of one’s diagnosis increases. It’s tough to find a more severe diagnosis than lung cancer for example. Our reluctance to “speak up” is

    compounded by long waits in the waiting/exam room…during which we systematically scratch one more question off out list because we do not want to take up too much of the oncologist’s time..until we are reluctant to say anything.

    If physicians want more engaged and involved patients, it helps if they invite or otherwise give permission to patients to participate and teach them when and how (during the medical interview) to speak up.

    On a related subject, patient initiated research is blossoming in many areas of health care. The most recent example involves the SCAD ladies whose initiative lead May Clinic to launch research on the rare and deadly heart condition called spontaneous coronary artery dissection. http://myheartsisters.org/2011/09/06/scad-mayo-research/

    Steve Wilkins

    http://www.healthecommunications.wordpress.com

  • Dr West says:

    Thank you all for your insightful comments, which were remarkably thought-provoking for me. I hadn’t even given thought to the resistance that patients might and probably often do feel in sharing their own research and ideas: we hear of far too many doctors rolling their eyes or actively discouraging patients from taking an active role in their own care decisions.

    Whatever challenges we are all experiencing with these growing pains, we can be sure that things will continue to change, almost certainly making it easier for patients to research their own conditions more effectively, even sometimes helping direct it (such as the SCAD example and some early work from PatientsLikeMe.com, though not much in cancer yet), while social mores will also changes to enable patients to participate in an active and even proactive way without being thought of/labeled as a “difficult patient”.

    -Dr. West

  • hopey5000 says:

    I happened to bring my father to a medical appointment and I heard some accurate words that one rarely hears from a doctor.

    “I don’t know” the doctor said. The question had to do with the period of response for a particular drug. The doctor went on to provide a range. It happened that the doctor is prominent and well-known, and indeed had some students with him at this teaching hospital.

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