Blog on Bad Doctor Visit

I'm following a really interesting exchange that's playing out on a blog and a Facebook page. The blog entry that prompted it is from Dr. Wendy Harpham; I've linked to her blog, On Healthy Survivorship, in the past. I think Dr. Harpham is fantastic -- she's a cancer survivor herself, so she has a real understanding of what goes on from both sides of a doctor-patient relationship, and her blog is a great resource for the emotional side of survivorship.

A few days ago, she posted a letter from a reader. You can read the post here, but the essence of it is that the patient, who has been dealing with cancer for 10 years, needs to choose between two treatments. She is a well-informed patient, and thinks she should go with one of the two. Her doctor thinks she should go with the other. During the visit to discuss the choice, the doctor cut her off, and the patient raised her voice. Now the patient thinks she didn't handle it well, and is wondering what to do.

Dr. Harpham responded. Again, read the original here. Dr. Harpham says
After acknowledging her pain -- "I’m sorry this happened." -- I encouraged her to:

1.Forgive herself: "Cut yourself a break. You've been under a lot of stress from your illness. The longer you question or blame yourself for the visit, the longer you are diverting energy away from efforts that might help."
2.Focus on the task at hand: "How can you move beyond it and continue to get good care?"
3.Make a decision: "Do you want to continue with this doctor?"
4.If the patient's answer is yes, consider options for repairing the rift: "You can send a note, schedule a visit (although you may need to work out something with the front office about payment), or talk with your doctor’s nurse about your regret, frustrations and concerns."

Now, what comes next in my reading is a reponse from Liz, who runs the Facebook page for Patients Against Lymphoma, the folks who put together the excellent Lymphomation.org web site. Liz is herself a lymphoma survivor. She posted a response to Dr. Harpham on the PAL Facebook page. If you can't read it there, here it is (long, but very thought-provoking):
1. Forgive herself? The patient might be somewhat embarrassed for losing her equanimity, but she didn't do anything wrong considering the stakes. In the time allowed for the appointment, the doctor was either unclear about the reasons he did not like the treatment for which the patient had a preference, or was perhaps uncomfortably less well informed than the patient about the other option --it wouldn't be the first time. In this day of Google Scholar and non-profit cancer organizations' excellent patient education efforts, there are some very well informed patients who may actually have some nugget of information a general oncologist might not be aware of. It was incumbent upon the doctor to hear the patient out (either then or later) and address both the patient's medical concerns and her legitimate need to be sure every treatment option is being thoroughly considered.



In my opinion, the professional is the one who failed in this interchange, not the patient. Instead of cutting off the patient's line of inquiry, the doctor should have calmly suggested several things: a second opinion with an expert in the particular cancer, perhaps arranging to speak with the patient later for a more in depth discussion at a more convenient time; and where is the review of the appropriate clinical trials, which should be a part of every treatment option evaluation? Being "right" is less important than openly exploring all options for a relapsed patient.


2. Vital here is a second opinion from another oncologist, a leading expert in the particular type of cancer, so that the discussion is between "authorities" and no rank pulling can obscure the real question at hand: what is the best treatment option for this patient? A best treatment option is often a matter of opinion involving conflicting schools of thought and incomplete data. Regardless, the choice should reflect not only recent evidence and theory but also the individual patient's goals for treatment.


Following the rule of "always invoke a neutral authority" when at loggerheads, a patient can easily tell a doctor that they wish a second opinion. No offense should be taken as second opinions are routine. While a patient can express respect and how much they rely on the valued opinion of their primary oncologist, they can also say they need to be diligent before making so big a decision as the next step after relapse. Diligence requires a second opinion. You would do no less when buying a new car. Often a second evaluation of the biopsy slides and tissue by a pathologist expert in the particular cancer is in order as well.


PAL urges a second opinion in all cases, but it is crucial if there is any disagreement or doubt. I am at a loss why this was not suggested by Dr. Harpham. A patient should also ask for a review of all appropriate clinical trials, which can only usually be done by a specialist in their particular cancer, and perhaps even subtype of cancer. Another reason for a second opinion. In lymphoma, there are experts in Hodgkin's, experts in indolent lymphomas, specialists in high grade lymphomas, transplant specialists and the like. It can be dizzying and one of PAL's roles is in pointing patients toward lymphoma experts. The patient can ask their oncologist who they recognize as the leading specialists and researchers in their particular type of cancer. Then call those docs and request a second opinion consult, which can often be done via FedEx, email and phone calls without requiring a patient to travel to the expert. Insurance typically covers second opinions.


3. The patient was well within her rights to not only provide feedback about the inadequate response and unilateral termination of the discussion. Next time she can request that the appointment scheduler pencil in a longer consult time so there will adequate time to address communication and working relationship guidelines and to ask the doctor what opportunities he thinks he has to be more collaborative and communicative in future consultations. Try to get the first appointment in the morning. The doctor will be fresher and less stressed. In such a consult, the patient can clearly and politely state her expectations for their professional relationship --that is not only one of patient and doctor, but also one of a professional employed by a client.


The best tact to take is to open the discussion with a thank you, appreciation for ways your oncologist has helped you or gone out of their way. Be both specific and general in your praise. Next, acknowledge the pressures and stresses your oncologist may be experiencing. Showing understanding of another's needs paves the way for them to be more empathetic toward you. Make all this as succinct and to the point as possible. Time is valuable. Next, the patient can segue into a a brief apology for raising her voice or saying something inflammatory. But she should not, and you should never, be apologetic for the feelings and the situation that led to an outburst. This is not her problem alone to fix. If this patient feels that it is mainly her responsibility to repair the "rift", then a serious reflection on why she feels this unequal burden is needed, hopefully with a psychologist or support group facilitator familiar with the effects of cancer on a patient's needs. Of course, the patient wishes to be diplomatic and considerate but not at the expense of losing dignity or sacrificing a voice in her care. If she has any doubt that her doctor isn't concerned enough about healing any rift to apologize and recalibrate his own behavior, that is a sign that she needs a more compassionate oncologist.


Of course they didn't have problems before. The patient knew less, she is currently being more assertive, there's a conflict now and the stakes are higher with relapse. The real issue is whether there are apt to be more bumps in the road ahead. Is the doctor more willing to listen to the patient's input and respond fully. If not, seek a new doctor.


To be fair to the oncologist, might it just have been a bad moment and the doctor lacked time for the discussion or was unusually tired and stressed? If so, then the patient might request that doctor simply say so in future and schedule another time for the discussion -- after s/he has reviewed the medical literature presented by the patient. If the doctor doesn't offer his/her own apology at some point, then scary as it sounds, the patient should put oncologist shopping on her to-do list before the rising stress level creates more friction and things completely break down.


Doctors should be able to persuasively present their rationale for preferring one treatment option over another and simultaneously recognize that they may be wrong. Doctors are human and have been known to make errors of judgment, particularly in the constantly evolving area of oncology. The cornerstone of modern science is doubt. An honest physician-scientist knows that there can always be new information that can change outlook on care. The wise physician always leaves at least a little room for doubting his or her opinion and being open to new information regardless of the source. Patients don't lose respect for doctors who admit they are human and can't possibly keep up with all emerging data for all cancers. Patients lose respect for arrogant doctors who would rather look right than be right.


4. A very real fear for patients is that offending a doctor can risk incurring the doctor's wrath or resentment and result in less than optimal care and attention (on a subconscious level at least). This common and almost unavoidable anxiety, a kind of medical Stockholm syndrome, sometimes causes patients to retreat from standing up for themselves, to delay or avoid taking sensible steps such as seeking second opinions, or effectively voicing their thoughts and goals for their own treatment. This fear must be worked through, preferably with a therapist or hospital social worker experienced with cancer patients, so that a patient's health care team doesn't become dysfunctional by losing the full, empowered presence of a competent patient in choosing his or her own therapy. Whose life is it anyway?


~ Liz for PAL

Dr. Harpham has responded to the original patient's situation (not to Liz) a couple more times in her blog, and it's also thought-provoking.

I'm not going to take sides on this issue, given the respect that I have for both Dr. H and for Liz. But I will say that I believe strongly in a patient's need to get as much information as she feels she needs, on her own and from her doctor, and to seek out any source (including another doctor) that will give it to her.

It's always interesting to see the perspective of a doctor when it comes to dealing with patients. We don't always get it, and I know from speaking to doctors that it's not an easy job -- especially if you're dealing, quite literally, every day with matters of life and death.

I'll leave it at that, for you to ponder.