when doctors disagree

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There should always be ONE right answer to any problem in medicine. You should be able to seek advice from a qualified physician about your symptoms and get an answer. If you present the next doctor you see with the same symptoms he or she should offer you the same advice as the first.

What? That hasn't been your experience?

I suspect it hasn't been the experience of most of you. That is why trust is so important. You need a physician you can trust to "do the right thing" when the ONE right answer isn't necessarily clear. You need a physician willing to say "I don't know" if that is the case, and help you find the right answer for you and your child, for you and your family. None of us can know everything. But we can strive to be certain that we know what we don't know, so we don't get caught up in making assumptions, and jumping to conclusions. Or, worse yet, telling you that the symptoms you report in  yourself or your child are not real, because they don't meet our expectations.

I have been impressed (not favorably) that many physicians, faced with a child or adult with a perplexing illness, or set of symptoms, will tell the parents, after a sequence of negative or unrevealing tests: "there is nothing wrong", or "there is nothing I can do for you." While the latter may be true, is that where the physician's responsibility ends? I am much more favorably inclined toward my colleagues who say: " I don't know the answer, so I am going to consult with colleagues around the country", or "I am going to refer you to someone who is a super specialist in this area", or who will help you to get an appointment with someone you may have found on the internet, or through parent support groups.

But what if there still is not ONE absolutely clear and convincing answer?

What if things are still muddy enough that there is room for debate? Lets say a child is diagnosed with a rare disorder, that may have many different manifestations. What if the symptoms the child is having are not to be found in any textbook or journal article describing that specific disorder?

That is where judgment comes in.

Physicians should be looking at everything they know, everything they can discover about the disorder, and looking at the specific needs of the child, and then work in concert with the family to determine the best path. Will that be the ONE RIGHT PATH?

NOT NECESSARILY

But the path needs to make sense in the current time, with knowledge that is available. That path may change with time, as more is learned, or the symptoms evolve and change.

So, what if I have two (or more) sets of experts who disagree with each other on how to proceed? For me, the answer is relatively simple: I defer to the choice an informed family has made as to the preferred path. Remember, the family knows their child better than any of us ever can. They know the subtleties of that child's behavior, and how it changes with perturbations of the illness. They may be able to detect signs of illness before there are any OBJECTIVE findings.

We should listen. We must listen.

Do I always know what is right?

NO

But I always strive to know what I don't know, and to listen to all sides of such an issue. My role might be to sit with the parent and ask them questions about what they understand about different options, to help clarify their opinion. What if I disagree with a plan in place? I have to do what I feel is in the best interest of the child; but defining BEST INTEREST is often problematic. It needs to take into consideration more than strict medical issues. It needs to include family values (not physician values), quality of life, social considerations, and more. This is one example of the ART of medicine.

If you are a patient or a parent, I would love to hear about any experiences you have had where things were not clear, and how you were treated. If you are a health care provider, I would love to hear your thoughts on this matter. If you are a medical educator, or learner, let me know how you think this aspect of medicine is best taught.  If you have read this post, and you have an opinion, PLEASE share it.

We can only learn by sharing our thoughts, and by listening to how physician behavior affects our patients, their families and their colleagues. Please help our community learn by leaving a comment.

Recent Comments

I think this is the one of the hardest things to face as a parent. Before my youngest was born, we were relatively healthy and hadn't dealt much with hospitals and doctors, etc. So I went into the situation with my baby thinking that doctors knew everything and there were usually clear right and wrong answers. That wasn't the case, and I've since learned that medicine is not an exact science, which isn't the doctors' faults. But it can be troubling when your child has symptoms with normal test results or when experts disagree or when your child doesn't necessarily show the symptoms you see at home when you're at an office... especially when a physician only evaluates the child briefly, and the parents/therapists/aides/etc are with the child all of the time. As a parent, you are told to fight for your child and to advocate for him/her, but sometimes you are afraid to because of physicians' reactions. I think that physician behavior can affect the patient and parents tremendously because they are the trusted "official" in the situation... leaving them with a lot of power... and they are dealing with people who are tired, worried, overwhelmed, stressed, sad, and sick...which makes for a fragile environment. Sorry to write a book...your post really hit home for us!

Hi Lauren, I appreciate the "book." No need to apologize. Some things cannot be said in just a few sentences. I cannot imagine how I would be as the mother of a chronically ill child. Especially if things weren't clear cut or straight forward. I am certain I would drive the physicians nuts. As always, I appreciate your perspective here.

This was my supreme frustration last winter when my child was sick intermittently. The symptoms seemed to be too obvious - which led down a path of rule this out, rule this out, rule this out, before going with the obvious answer, which I'll admit was the more serious one, but when the peds docs, and one set of spsecialists believed the obvious answer was the right one, and the specialist who would need to handle the obvious answer was resistant, we as parents felt like we had no choices. We felt like we were pegged the "difficult parents" because we advocated vehemently for what we "knew" to be the answer. That having been said we do respect the opinions of the doctors we've seen, but it was after multiple hospitalizations, that we felt the roadblocks really needed to be removed - and risks needed to be taken to end our child's suffering. The cautious route was really difficult to withstand over two months of increasingly intense recurrent issues.

Malia
I very much appreciate your perspective. How can we "fix" this problem? Do you have any sense of what you would do differently if you were starting down that path all over again, knowing what you know now?

I like to believe that going forward we have "history" on our side. Having also consulted with an awesome specialist at UVA who took the time to explain that he agreed with the opinions of the difficult specialist, I understand better why - but that's kind of thing. The specialty in question for us exuded an attitude of this is our answer and we don't have to justify ourselves to you. If they had just sat down with us and explained why they felt they way they did, and respected us as parents enough to talk to us with some education and less condescencion we might have been better able to stomach the multiple hospitalizations and labs leading up to what we felt was the ultimate solution - and in fact turned out to work for our child. Again, we hope that the "next" time we have this happen, should it ever, we will be able to better explain her history and have a doctor who will listen and say, "You're right, let's not put her through all that again."

I am so sorry you had that experience but  I know that it is not uncommon. IT is why it is so important to train doctors to listen, truly listen to the patient or the parent. You DO know best, even if you do not know medicine as well as the physician.

One of the most important lessons my pediatric residents have identified that they have learned in the first six months of their post-medical school training is that "children are not textbooks" and that no matter what they have learned in medical school, there are always nuances as each child is different.

We have started a new conference for our students, residents AND faculty, called "Case of the Week" in which we have the residents identify patients they have seen with presentations that may have initially been undiagnosable, or may have lead down the wrong path. They present these cases in a step-wise fashion, as we try to help the audience "learn how to think" and we emphasize the need for cross specialty communication, and we can emphasie the importance of communication with the family.

Your child's story might make a good "case of the week" If it would be ok for me to present this case, let me know, and maybe you could even come in during the conference if you were willing to explain the importance of doctor-parent communication, and why it is not always preferable to "do things by the book"

I think it is a very fine line. I think that both parents and the Dr.'s need to respect and listen to eachother. Both sides need to be open minded and both sides have to be willing to try difficult things. My son has mito, it was a difficult road to get a diagnosis. I never felt Doctors were exactly on the right path, but I had to accept, it doesn't matter WHAT we call it, we need to treat the symptoms. So, that became my motto. I was shocked when we finally received genetic confirmation and I did have to seek out another specialist. Our hospital, prior to the genetic dx. did not agree with labeling it mito. That was deffinately frustrating but I had to just accept it. There was no way to change their mind, and I had to respect that as we really DIDN'T know for sure, so in a way, they were right. I had to move forward with the objective testing and pray that we could figure things out. Sometimes the underlying diagnosis doesn't matter as much as the symptoms being treated and being able to get care for those. My child's symptoms were mostly GI related. It took a lot of faith but we did the manometry, which showed what I expected and helped us move forward, thankfully. We had to have a local team that we could use, in addition to our "mito specialist". Our local team and her do not see things eye to eye, however I feel they both have my son's best interest in mind. I try to stay open minded to the optimism the local team has. We trudge through things we might not have if we had gone wtih the specialty team. I do not think that either are particularly wrong, but we had to do what works for us. Our team would not want to see my son staying on TPN when there was the CHANCE of getting off, so that's what we are doing. The other team would have been comfortable giving up. Mito is so variable that I think it is very important for all sides to be open minded and care to be consistent. We have an awesome local team that has helped us keep that continual care. I have a GI nurse that I can page 24/7. She is in charge of telling us when to come in, handling fevers, ordering cxs, etc. I have his GI Dr.'s cell phone that if there are any questions I can have them call. They go above and beyond for their patients. That is ABSOLUTELY the one thing that has made our lives sane again. This is the same team that it takes me to be open minded to work with but it really works. Also both our genetics and our GI work together EVERY WEEK in order to make his TPN and fluid plan. So, its not all looked at from a GI standpoint and not all a genetics standpoint. Its a little of both.

Prior to this local team, we were constantly running into issues and it was really not workable. So, after my novel, I'd have to say the only way to really make it work is have a very responsive and consistent team to have the lead and only use that team. Granted, if we are ordered to the ER we have whoever there doing the assessment but they are encouraged per our team. We have been admitted under different dr.'s but our nurse always rounds with them and our genetics nutritionist is ALWAYS in charge of our tpn inpatient. So, while there are some points when control is lost from our team, they are always INVOLVED at least.

Wow, Lisa, welcome to the community, and thanks for your comment. It's not a novel, because you have lived this. How would you show other docs how to accomplish what your "team" has done for you and your family?

HOnestly this is becoming my passion. I can't even begin to describe the difference this team has made in our lives and its all about HOW this team works. It is ALL about continuity of care AND keeping the kids at home at all expence short of putting their lives in danger. Being able to truse the parent observation is huge and again, the parent trusting that the clinician is listening and interpreting things correctly and then trusting their advice. Having a nursing company or very dedicated nurse who will draw the cxs either at clinic or at your home or meet you at the ER, is huge. And then, being able to get a dose of abx. in the ER and delivered to your home during the waiting period is another thing that they do that really keeps our care consistent. it takes a very dedicated nurse and Dr. working closely together but its doable and its amazing. I know this team is trying to get other dept.s within our hospital to model this and I can't say how invaluable it has been. We have been living this a long time and have finally just come into the arms of this team after a particularly rough time inpatient and with lack of communication among Dr.'s and institutions.

Dr. Ackerman, I want to thank you for taking the time to be so honest as well as reaching out for answers! I believe there are many physicians out there such as yourself whom really care for patients and do not see them as just another number.
Although our experience was not with a child (which would be much worse), it was still extremely tramatic. I could not agree more with Lauren's synopsis above. When you have to watch a loved one suffer in chronic pain for 18+ years, it takes a big toll on the patient as well as the family. If they are on pain meds, they then fall completely under the physician's "power".
Due to her complicated illness our loved one had multiple experiences with a variety of physicians from a variety of clinics/hospitals in multiple states. Some positive and some "learning experiences”.
Reaching a dx was very difficult and time consuming as her symptoms did not seem to match the "text book" cases. But once it was finally "labeled", she was sent to some wonderful specialists all around who agreed her case was puzzling but genuinely seemed to care. However, the last few years she became far too weak to travel that far and we often perceived that some of the physicians dealing with her case became numb/tired and quit listening after the chronic pain went on for too long. The "impression" we perceived from some providers in the last few years, was: "Maybe the disease is not the main culprit as much as she was unmotivated? Mainly depressed? Drug seeker?"
Our loved one begged for help numerous times from a variety of physicians/specialists. We have never seen anyone suffer so long and hard and yet fight so hard for her dream to just "function". I hope to never see this again, which I guess is why I am writing this. The following examples are only a very small “window” of her life at the very end.
As her medical POA, I personally began monitoring her pain meds (non-narcotic) and called one of her physicians when I realized her pain was not even close to being under control. The physician seemed very frustrated and said maybe she should just try not taking anything for pain. I asked her to switch physicians. She did and at first we thought that physician seemed to "get it". However, later after laying in bed screaming/crying in pain for a couple of months, she finally swallowed the last of her pride and, on a healthcare professional's suggestion, agreed to ask for home health's assistance to try to regain some functional ability. She very painfully took a shower and it took everything she had to get to the appt and beg for help. Unfortunately, the physician and nurse literally laughed at her request, saying "there are 80+ yr olds who cannot get home health. You think you can??" (She was considerably younger.) I very respectfully tried calling the physician as I thought it was just that the physician did not fully understand how bad it really was and how severe her limitations had really become. The doctor refused to speak to me.
After several years of literally begging for help from all the right sources, she finally gave up and sunk into self-medication. Was she wrong? Absolutely!
We vehemently disagreed with her for giving up, but we really had nothing else to offer and the professionals she needed to rely on had seemingly failed her. She finally became pain free only after she lost the fight.
Yes,I am certain drug seekers unfairly make it very difficult to judge true pain and put the physician's license at risk. But sometimes I think our lack of empathy and lack of understanding can actually push them to self-medicating. And are we sure we can truly judge the degree of another's pain/weakness in just a few minutes spent in the office? I know it is too late to help my loved one but I am worried about the many out there just like her.
What can improve?
ALL (not just physicians!) need to take time to listen with genuine empathy and respect to both the patient and the loved ones they have allowed to help them. They are usually experts in that individual patient's sickness too. How you treat the patient, ultimately affects the patients emotional and physical health, and even their families lives too. Remember, one quick judgment/laugh can have devastating effects on some chronic patients and their families.
We need to find a way to get quicker access as well as true physician office follow up for our chronically ill patients to pain clinics when the family physicians are overwhelmed. Otherwise, can we innocently say we are preventing self-abuse while promoting quality of life?
(Sorry for yet another book)

Trina
Oh my I am so sorry your loved one faced the problems you have related. I fear it is just too common. One of the problems, of course is that the medical establishment sees so many folks who exaggerate their pain, or seek medication they don't really need, that it becomes very hard to separate those who are truly in pain from those who are seeking pain meds. This has made some physicians skeptical and many have indeed lost empathy. Sometimes I think my problem is I have too much empathy. And that is hard too. As a physician I have to make a judgement about what is the right thing to do for a patient. In my case, that might not always be what the parent desires. So, sometimes to do my job I have to go against family wishes. But if I always did EXACTLY what someone else wanted, I would not be meeting my true obligations to the patient. Problem is, we don't always know where that line is between what might seem like the right thing to us, and what seems like the right thing to you.

What we need, though is for health care providers to keep looking for answers, to NOT leave a patient to suffer alone, to NOT give up. As you mentioned, we need to listen with empathy and respect. That is so true.

Thanks for your comments, and welcome to the community.

I find it interesting, but not too surprising, that you have gotten so many comments from people with mitochondrial diseases. I, too have mitochondrial disease, as do two of my three children. My eldest daughter is the only one of us who is very severely affected at this point. She has profound, regressive autism, believed to be secondary to her mitochondrial disease, and pulmonary involvement. When we see her mito kick in is with heat intolerance or with minor, typical childhood illnesses. Before we understood her pulmonary involvement, every time my daughter contracted viruses that caused her to vomit, she declined rapidly and radically, becoming acidotic after vomiting only twice and requiring IV rehydration and inpatient hospital stays of 2-3 days (of IV's and, interestingly, breathing treatments) to bring her back to baseline. Bizarrely, what we found over time was that although she does not technically have asthma, putting her on a 9-months-out-of-the-year maintenance asthma protocol of nebulized albuterol and pulmicort twice per day is what allowed us to keep her out of the hospital when she contracts these vomiting bugs. Because apparently (at least, this is the theory), her pulmonary muscles are weak, due to poor mitochondrial function, and she is forced to use a lot of energy to breathe, to compensate for this. She doesn't require oxygen or ventilation help, but she has to work pretty hard all the time, and she has allergies that add some extra stress. So when she gets hit with the even bigger wallop of a virus, it's too much for her body, and vomiting puts her over the edge. None of this is conventional medical protocol, but it is what works for my daughter. Fortunately, none of it is very invasive, either, so we don't get a lot of pushback from anyone. We are lucky. That's not the experience of many, many other families for whom I advocate who also have unconventional plans which work for their kids but which cause some physicians to balk.

My father once told me that it's important to remember, when advocating in medicine that doctors are "just practicing" medicine. No one knows everything. And you are right about how parents know their children better than everyone else. There's a fine line though because doctors generally do have the answers if they talk to one another and work together, and they do have to watch out for abuse, etc. However, I certainly see in cases of unusual and widely-presenting diseases like mitochondrial disease that there tend to be a lot of knee-jerk reactions by doctors who are not educated about mitochondrial disease, and there tend to be a lot of decisions made by doctors of one specialty without regard to general mitochondrial function or without regard to the cascading metabolic issues that one of their decisions can cause. For example, anesthesiologists will often wash their hands of a mito patient immediately after a procedure or send a child home when s/he is up and eating/drinking within a few hours of a sedated event. When that child comes back into the ED 72 hours later, spiking a fever that doesn't respond to medication because the mito in the child's liver are slow to metabolize the anesthetic agents, anesthesia often never even gets called back into the picture. The child's chart often never even reflects the anesthesia reaction, and the next time a surgical event happens, there's a war between the parents and the anesthesiologists. We see this scenario over, and over, and over. A mitochondrial specialist would totally back these stories up, but to get this information, an anesthesiologist would either have to talk to the mitochondrial disease specialist or listen to the parents (or, hope that the chart had been updated appropriately). It's a frustrating issue and one that causes a lot of unnecessary friction and healthcare problems and delays.

This is an important topic. I am glad you brought it up. Careful collaboration is a really important facet to providing the best possible healthcare to patients - especially those with unusual conditions. Thank you!

Dear Christy,
Thank you so much for your heart-felt comment. I am so sorry you have had unpleasant experiences. Doctors in general want to do what is right. We don't always know what that is, yet few understand the art of medicine as your father did. We are expected to be perfect, to know it all. That is no longer possible, and in fact, never was. So much is out there that we don't know. Its the "unknown unknown" that gets us, or to put it another way: "what we don't know that we don't know." That is why I am an educator, and why I feel so blessed that our pediatric program director is a doctor to many special needs children. These are the children that teach us how much we don't know.

I am so thankful that you took the time to drop by, and to write your comment.

Hello,

I stumbled upon this blog entry as I was searching for answers to my son's health concerns. It's so hard when the doctors and I disagree and what's worse is that they just don't adequately explain their findings. Then I am left with google and of course that gets me the "Dr Google" parent. I am so sick and tired of doctors telling me it's just a virus. Why does it last so long? Why does he get it so much and why is it a little worse/different every time? And for goodness sake, why don't they sit down and explain labs to us? After more than a year of being told it's just a virus, getting more antibiotics, doing more blood work that never gets explained anyways, more ED visits and more "we don't know what to tell you but we don't see cause for concern", it is taking a toll. I feel like, even if every episode is just a virus, something is wrong. And when doctors constantly tell me I am over concerned, and some doctors are very rude and disrespectful about it, I have to ask myself if I am doing the right thing. Do I feel like something bigger is going on? If I take a step back try to look without emotion would I still be concerned? My confidence is shaken and I wish there was an easy answer to know what to do or what to say to the doctors. Some days I do want to just sit and cry and give up but watching my son get worse and worse, especially this episode, is so difficult. Why don't doctors listen more to the parent?

Danielle, thanks for your comment. I wish could assist you in some way. You seem overwhelmed by what is happening in your son. Please be persistent. Keep asking questions. Perhaps you need to find a primary care provider for him who can sit and explain things to you, and work with you even if he or she doesn't have any reason to think there is something more wrong than a virus. Do you see the same doctor each time he is ill? That would be important, so that the same health care provider (could be a nurse practitioner or a physician assistant) can see how the illness affects him. Please let me know how things are going for you.

Dear Dr. Ackerman,
I was not the mother of a chronically ill child but... a child who had suffered from headaches.Medicine is bittersweet for me because it nearly took my child's life and it also saved her life. I now currently have a child who has many health dilemma's as a result of what occurred and I guess she is now considered a chronically ill child at times. She is a true miracle!!! Doctors are fascinated by her story and also heartbroken over what happened. It all could have been prevented if only... Her Neurologist(2nd Opinion) and Pediatrician had truly listened to her. They heard what she was saying but, they just did not truly listen and understand. We have encountered many truly empathic, compassionate, loving Surgeons,Doctors, Nurses, Respiratory Therapists, Physical Therapists, Occupational Therapists, Speech Therapists and list goes on... One choice can change many lives forever. I truly believe that my daughter was left on this Earth to make a difference in Medicine. She wants to be part of the medical world one day and help others. Your quest for knowledge and to make a change is truly admirable. Thank you for helping me to continue to be my child's most important advocate.

Raquel, Thanks so much for sharing your story with us. Yes, listening. Truly listening to a patient or to the parent of a patient is the best thing we can do. We cannot put patients into a box they don't belong in, when that box doesn't fit. We cannot force the patient to have the disease or illness we think they have. We have to be openminded and flexible, while using the knowledge we do have in a way that will help make a diagnosis, and help get the patient back toward wellness.

One thing most doctors don't want to consider is that something wrong could be related to something the doctor did. But if there is a new medication, a new dose of a medication, or a new combination of medications, one must at least CONSIDER the possibility that our medicine has made things worse.

Please keep coming back and offering your comments. By reading them, others will be helped to see your perspective, and that will be helpful to us all.

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About Dr. Ackerman

Alice Ackerman, MD, MBA, FAAP, FCCM is the Chair of the Department of Pediatrics at Carilion Clinic and Professor and Founding Chair of Pediatrics at the Virginia Tech Carilion School of Medicine. Dr. Ackerman is recognized nationally as an expert in pediatric critical care.

She has been at Carilion Clinic since June of 2007. Her primary goals are to enhance the health care of children in the Roanoke Valley and Southwest Virginia, and is actively working to do this both as physician in chief of the children's hospital, as well as through involvement with many state-wide initiatives.

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