Birds In Spring: Communicating Across Doctor Lines
I wish my doctors talked with each other.
Not all of them, just the main ones: My two oncologists, my primary care physician, and my nephrologist. Those are the doctors that I see regularly.
Sometimes they send each other their notes from my most recent visit, although I’m not sure this happens efficiently all the time. On top of that, I suspect that these office visit notes don’t get read until I pop up in the queue for an appointment with one of those doctors. That could be weeks, even months later.
What got me going on this subject was a recent blip in my blood work related to my kidney function. In talking about this with one of my doctors, I said that I had discussed this with my nephrologist. The response I got was: “You have a nephrologist? How often do you see him?”
That comment wasn’t as bad as it might seem. Since my initial diagnosis, I have had transitions from one doctor to another either because I was forced to change because of circumstances or because I chose to make such a change. Things like that can wreak havoc on continuity.
What bothered me more, I think, was that my nephrologist’s take on what was causing the problem was considerably different than what the other doctors thought. It was left to me to communicate this.
Don’t get the wrong idea. This isn’t a criticism of any of my doctors. I think they all are excellent. But they all carry heavy caseloads, and they are extremely pressed for time because of that.
That’s the rub. Each is focused, often narrowly, on what he or she is doing for me and how those things are working out. Little time, if any, is spent on what the other doctors are up to.
So that leaves the communication across doctor lines to little ol’ me.
One difference is that I am my only patient. So, I think I’m pretty competent in filling in each doctor with the latest developments among those in this small group. I’m comfortable doing this but should it be my job to make sure all my physicians are on the same page?
What I’m talking about is something called “care coordination,” which is all the rage in health care right now as the field looks for ways to be more efficient and less costly, with fewer mistakes.
I may have mixed feelings about “coordination” because I worry that the underlying motivation is to save money, and I’m concerned that it could sometimes usurp the best judgment of my doctors. I trust myself to know more about what’s going on in my treatment, as well as with the rest of me.
Right now, however, it’s my job to tell the right hand what the left hand is doing.
There are times when I am out of sorts and I’m not particularly capable of making sure that we aren’t just treating the latest difficulty in a vacuum. This is where Linda, my wife, has to step in and take over.
In the aftermath, she and I are the ones left to relate and share information with my various doctors about any particular health problem I’ve encountered and how it was resolved.
I’m not sure this is how it should be.
Perhaps I would like there to be one person in this loosely knit health care team of mine who would be responsible for knowing exactly what is happening with me across all those doctor lines. And I hope it would be a medical professional, not a bean counter. I don’t want this person to take over my treatment and the rest of my health care. I’d like for him or her to monitor it and direct it, and bring my doctors together.
Most importantly, I want to be a partner in this coordination process. There are times when the decision on what to do next is mine, and I don’t want to lose that.
I know there are many people who follow the dictates of their doctors. That certainly is okay for them, but not for all of us who are extremely involved in the course of our treatment and all that’s related to it.
Really, I’m not certain how we resolve this. I do feel that it’s not enough that the only time my various doctors hear from each other is through notes sent through the mail.
Wishing for something more than that may be pie in the sky.
Nonetheless, the fact remains that my doctors don’t talk with one another.
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
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I agree so much! I have a pulmonalogist (main doctor) for sarcoidosis, opthmalogist (monitors for glaucoma and sarcoidosis), primary doctor, oncologist (monitors my MGUS), gastroenterologist, gyneological surgeon (who commuicates with my primary), and currently three dermatologists who don't talk anyone. I currently have a mysterious rash (if you call bleeding lesions that last over 11 months and appear on my back and legs a rash).
My pulmonalogist referred me to my oncologist because he thinks I may have a t-cell disorder. He was supposed to call my oncologist but I found out that he didn't. So, my oncologist referred me to a third dermatologist for a third opinion. So far, I have two different diagnoses and will see if he will give me a different one. My primary has another dermatologist in mind it that one can't figure it out. My pulmonalogist thinks that the other two diagnoses are incorrect. All I want is for it to go away or figured out properly.
Frustrated
Thanks for another great piece that brings a major issue to light. We experience the same situation with my sister, Deana. It is such a challenge to keep track of all the information and to be sure it is shared when needed.
There has got to be a better way!
We join the crowd...... there is no communication in the contempary medical world.....could it be ego? could it be too much trouble? could it be lack of confidence among physicians? Perhaps the new "pay in advance" [pay a rather large fee at the beginning of each year] practice of medicine is the success. Pay your money - get the care. Yes, I know my cynical attitude is apparant.
I do appreciate you, Lou, for bringing this troublesome issue to the forefront. Thanks.
Great article! As a gynecologist who acts as a primary physician for many women I serve, one of my main roles is to empower them to take charge of their own health. With an abundance of good web sites (like this one) to encourage patient education, I encourage them to be a partner with me (or their PCP) to take charge of their own health care. First step is to understand whatever their diagnosis or health challenge is as best as they can, and then to organize all objective data (labs, path, imaging, consult notes, etc.). This makes it possible to summarize and update their status with any health care provider or specialist they see. It certainly helps if they have a supportive partner, relative or good friend to help and encourage them.
Next step is to explore their therapeutic options, both allopathic (meds, surgery, radiation,etc.) and complementary or holistic (nutritional, physical, mind-body, energetic, etc.). My opinion is that this works best when using not only the intellect, but one's own intuition. No two people are exactly alike, biologically or psychologically. Whatever health challenge one is facing, there are many therapeutic options which have to be tailored to the individual, who need to truly trust and believe in whatever treatment regimen is chosen. I dislike the idea of compliance, because if a patient does not follow whatever is prescribed, they are likely not on board with their providers, and therefore not fully empowered.
As a physician, I can attest that electronic medical records can help in the accurate, timely and organized sharing of medical information. But it is time consuming, and often incomplete or inaccurate. I agree that the best way to get a consensus among physicians is interactive dialogue. That is why a tumor board is so useful in managing many cancer patients. Surgeons, medical oncologists, radiotherapists and social workers get together to discuss "cases". However, the input and final say of the patients is paramount.
OK, so now I take my doctor's hat off. In the last six months since my diagnosis of high risk MM, I have been challenged to walk my talk. My therapeutic approach has been the latest, best available chemotherapy induction. Now I am preparing for an autologous stem cell transplant, to be followed by maintenance therapy. I have seen several specialists, and feel comfortable with this approach. But I also incorporate holistic approaches: nutritional, supplements, acupuncture, bioenergy, and looking for meaning and lessons to be learned.
Ultimately we all have to surrender to the uncertainty of our outcome, and be willing to alter our chosen treatment and expectations. For me, quality of life is more important than quantity. Sharing as we do through Myeloma Beacon, and in our personal lives, is inspirational. Finding meaning and purpose in our lives is our challenge and opportunity. May the New Year, 2012, be a gift and a blessing for all of us, our society, and our entire planet.
Before my regular, scheduled app't at the 'Lymphona Clinic', run by the Cancer ctr (only every three months now), patients are required to fill in a form with such questions on it as "have you changed doctors', 'have you stopped or started any new medications', what concerns do you have today', and then a long checklist of symptoms you have had since the last app't (pain, nausea, infections, etc. etc.). The nurses working with the oncologists then review this and both the nurse and the doctor address your concerns. I find this to be very helpful lest I completely forget some issue I had meant to bring up, which has happened!
I don't have the experience of working with several specialists, but I find the Cancer ctr.'s approach to be organized. I always ask for the copies of any lab or radiology tests done, for my own files and peace of mind. Am at the point, not needing infusion chemo on the same day (as was done for my induction chemo), of being able to get my blood work, etc., done in advance of the app't, thus having the latest results available to discuss at the app't (in particular the light chain tests). When I underwent the SCT, I was in a different dep't, was 'handed off' to them and then returned to my original oncologist a few months later when it was deemed that I was no longer an SCT patient ..
If I have concerns between app'ts I can call the Cancer ctr. and a nurse will get back to me within 24 hrs or less and 'triage' my concern . So far this system has worked well...there are many many patients and this is how they keep the system running efficiently. We try to be as well informed as possible before an app't so as to get the most out of the time with our oncologist.
If we have to start coordinating with specialists outside the cancer system it may complicate matters, no doubt!.. but at least the cancer centre is well organized.
Lou - great article - and great information for anyone newly diagnosed. Take lab results to all appointments - research, research, research and above all, don't hesitate to ask questions and offer recent information on clinical trials to the docs. Our best to you and Linda for the new year!
Another wise column, Lou. There are lessons in your words for all of us who are patients with any illness at all or have sick family members. I guess what it amounts to is being well-informed yourself and sharing your medical information and talking to all the doctors you see, whether or not they're able to even act as a team.
Thanks everyone for your very thoughtful comments. I really appreciate your taking the time to share your thoughts -- particularly good ones in this case.
Managing one's way through health/medical care, is a challenge, as I'm sure you know -- especially when things get a bit complicated as they can for us myeloma patients. Here are two examples that illustrate a bit more:
- Suppose my NYC oncologist sends me to another doc for a consult? Does she notify my other doctors of this event and the consult's "findings?" I don't think that happens, unless it lands in one of my "office visit notes" that she does.
- My local oncologist is usually my first line of defense when it comes to untoward medical events, some of which have landed me in the hospital. Does he notify the others afterward about what happened? ...especially my NYC myeloma doctor? I don't think so.
Shouldn't they all be telling each other what's going on with me?
Happy New Year to you all, and I hope that 2012 is a good one for all of us.
I can really relate to this article. I have a Primary Care Physician, oncologist(MM), neurologist(essential tremors), pulmonologist(emphasema-nonsmoker), and psychiatrist(depression). It is very frustrating to coordinate care. Some of my symptoms cross over into the other Doc's area of expertise. When this happens I usually see all 3 specialists,and come away without any answers or relief for the symptom - continious headaches and nose bleeds. They gave me an MRI of the brain, and head to toe x-rays - all clear. The headaches and nose bleeds are my problem to deal with...
I was recently rejected for social security disability and had to hire a lawyer to handle the appeal case for me. That has become an additional burden to deal with. The lawyer wants my doctors to fill out some brief medical questionaire forms for the SSDI appeal case. Reactions vary from "sure no problem" to horrified stares like a live rattlesnake is in their midst!!!
It is frustrating to try and juggle all of these communications. Especially when one is not well and very fatigued. It feels like a never ending marathon!
Excellent article addressing a very important subject. I hope it starts a much wider discussion of the problem.
At present I am in the midst of trying to figure out which doctor, if any, has the overview and big picture of my overall health & myeloma care; and besides myself, who is "in charge".
The fact that no doctor is responsible for overall care places an unreasonable burden on the patient & caregiver. Not only are we managing all the medical appointments, medicines, travel logistics, bills etc., but we often have to figure out the next steps in treatment, managing side effects, tracking the developments in the disease, as well as our non-myeloma general healthcare needs. Not to mention the emotional and physical burdens of the disease.
I started doing group emails to all the docs to make sure they were at least aware of the situation if not talking to each other. Each symptom seems to lead to a different specialist, who only looks at their small piece of the puzzle.
If the primary care doctors cannot take on the overall care because of a lack of blood cancer expertise and the blood cancer doctors is too specialized for all the issues that come up. And both are overwhelmed with too many patients. Then who can take on the task?
Insightful article, Lou. Over the years, I have had a number of doctor changes because of insurance, retirement, getting tired of doing my own research, etc. and started getting copies all tests that I keep in several binders. I have a typed list of all Rx and OTC medications that I take on the first page and the second page has various diagnoses, surgeries, tests, scans, etc. that I have had along with dates when done. In the last couple of years, I am finding that if I see a new doctor that I have been referred to, the new doctor has problems getting records from my long time PCP clinic. I don't know if this is because of the electronic record keeping or something else. So...my notebooks have come in very handy. I have also found that if one of my outside doctors (as opposed to the PCP clinic that I go to) orders tests, it is easier to skip my clinic since the clinic seems to have problems with orders from outside docs. I use the hospital for tests or see another doctor that my neurologist, nephrologist, gynecologist, orthopedist, etc. refers me to. When I see my PCP once a year, I present him with all of my various test results. I thought the electronic record keeping was supposed to simplify the problem of record sharing; but so far, it has not. I, too, do not feel that I have one doctor who is in charge nor do I feel that I have a doctor that I can trust to be on top of things.
Great article Lou. It is a common frustration and just one more thing we have to ride herd over. Getting contrary advice, cross orders, incorrectly written instructions, people unwilling to read them, it's enough to make your head explode. I have had a few doctors in my life who actually validated me for keeping on top of everything. That kind of blew my mind, but I accepted it as a non arrogant compliment and full understanding that they know all too well how the balls get dropped. It's almost as if they write it down and it doesn't get carried out, it's not their butt on the line, but someone else's. Its a very low form of responsibility. Every once in a while I feel lucky when I find a "team" who works well together and raises the level of responsibility for the care of the patient. But it is not the standard and that is a disappointment.
Another winning article by Lou!
Once I saw my transplant oncologist for a very important meeting and he suggested I try Velcade/Rv/dx. When I told him it didn't work 2 years ago he put on his poker face and suggested a biopsy. I got the distinct feeling the biopsy was his way of saying "ooops, I should have spent the 3 minutes needed to go over his charts. The biopsy will give me another few weeks to get ready for his appointment"
I also made a simple graph of my two years of treatment..mspike on the Y axis, timeline on X axis. And treatment arrows pointing to the different dates. Both my oncologists asked permission to copy it! I can't believe they don't make these grade school graphs for all of their patients. Instead they are always fumbling through folders looking for dates, treatments etc.
But in the end, it is after all "just" their job. They see hundreds of other patients before and after me, so...I understand. It was easier when medicine wasn't so advanced. You only needed one doctor in 1950 because there was so much less knowledge out there.
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