Why do we keep coming to doctors? We just wait and wait, and nothing changes.
I overheard one of my patients say this just as I left the exam room.
This patient is like many patients I see who have a collection of symptoms, large and small, that affect and debilitate even the most resilient people. These symptoms include excruciating headaches, brain fog, persistent fatigue, chronic pain, and weakness, and there are many others. The symptoms persist despite normal test results. Patients with unexplained symptoms often go to many different clinics and see many different specialists who try and elucidate their diagnoses. But they are often left only with a list of diagnoses that have been eliminated. And if a diagnosis is provided, it is possible that curative treatment isn’t available. Sometimes even symptom relief is limited.
Visits such as these are frustrating for everyone. Patients are desperate to find even the slightest relief. Doctors are desperate to provide something to help. When every option provides minimal relief to none at all, what should physicians do?
Tell the patient you don’t know. That we don’t know. That science doesn’t yet know.
Doctors are increasingly talking about uncertainty, which is recognized as a constant in our line of work. To be clear, there are a lot of things that we are certain about. Advances in science and research have allowed for a greater understanding of more diseases than ever before. Further, we have more treatments than ever before. This shouldn’t be underestimated. People are living longer and healthier lives. Doctors are well trained to investigate, diagnose and treat many and even most conditions.
But uncertainty in medicine is omnipresent. In medical education, uncertainty is encouraged as a bridge to curiosity. In research, uncertainty prompts scientific questions and study. In clinical practice, uncertainty drives the process of diagnosis and investigation. Uncertainty might be uncomfortable, but in many ways it can be helpful. It is humbling, and it is motivating. Recognize what you don’t know, ask the right questions and work toward an answer.
Uncertainty, however, can also make the clinical encounter feel fragile. For patients who are suffering, a diagnosis of “I don’t know” is not particularly comforting or reassuring. I often hope that ruling out life-limiting diseases will alleviate some anxiety for my patients, but in reality it does not negate the debilitating effects of their symptoms. I feel obligated to present my uncertainty, but I don’t want my patients to lose faith. When I explain that there is no known diagnosis or treatment and that I am uncertain how to help, I don’t want patients to feel abandoned or even worse, that I don’t care.
Uncertainty also slots itself into a more existential role. If I am not able to provide the type of “medicine” the modern-day physician provides, what role do I play as a physician? If every disease has been ruled out and there is no further testing, no further investigations, no clear treatments I can provide, am I even the right person to be treating my patients?
I don’t think these questions have easy answers, which is why many patients with unexplained symptoms see so many physicians, and often other allied health professionals, including physiotherapists, psychologists, and naturopaths. Each time, they hope this new person will have an answer to their illness. For many of these patients, going to the doctor is an extraordinary affair. Their debilitating symptoms mean that the transportation, and often the hours-long wait at the doctor’s office, can be exhausting. To leave no different than when they came must feel so disappointing and fruitless. And this brings me back to my patient, the one I overheard asking why she continues to see doctors if they haven’t much else to add. She waited for me, and I felt that I had nothing more to offer.
At some point, after all the specialists have been seen and all tests completed, physicians have to acknowledge that there are limits to our knowledge and understanding of disease. That even the best, most experienced among us might not have an answer. To explain to our patients that there are things we just do not know is a fact in the same way a diagnosis of hypertension can be a fact. We owe patients this humility and honesty. And then, I think, there is a role, once all the investigations are done, to act as an anchor, a home base for patients.
Maybe one day we will have answers and diagnoses and treatments to illnesses we don’t understand now. Regardless, I hope and expect that many of my patients will grow old and experience life. With time, hopefully, most of them will age into a disease that we do understand. And when that happens, I want patients to feel comfortable enough to approach me, and to find me just as present to treat that new disease as the one they’ve lived with all their life.
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3 month A1c is being upcoded every month: example Average Glucose 163 = 7.3 A1c is correct
Average Glucose 162 = 8.8 wrong! = medical UPCODING
The American Diabetes Association & The Joslin Diabetes Center will not answer this medical upcoding
going under HCC= COKER GROUP LLC,2400 Lakeview Pkwy. Ste. 400, Alpharetta, Georgia 30009
My reading is 7% – 8% (CMS – HCC) CMS is Medical & Medicaid the HCC is the coding company. On their website they pride themselves of being in and out of court for UPCODING. I guess they think they can go as high as 8.9 before they go to another bracket. HELP…this is not fair!
This is a brilliant and thoughtful article and I’m so grateful to have read it. After six years of illness, I was diagnosed with an autoimmune disorder in Hamilton, the treatment for which has helped my symptoms greatly. In 2020, I was sent to the diagnosing physician’s replacement, who would not accept the original diagnosis in spite of the test results. He wants all medications including pain medications to be stopped prior to re-testing.
This would make good practical sense for an initial diagnosis but I don’t understand the reasons behind this demand. It would also have to be done in hospital and I am unable to find a physician to oversee this during COVID and my GP doesn’t have hospital privileges. This essentially puts me back at square one after 14 years. It has been incredibly frustrating and I am lost and questioning everything. My family physician has arranged for me to see a GI in the late fall of 2021 but I’m really afraid to see yet another new physician. Until I saw your article, I was beginning to lose all hope. Thank you for taking the time! I sincerely appreciate your insight and wish you and yours all the best!
Yet another post I’m going share with my buddies on facebook. Thanks!
It is okay for doctors not to know, however it is not okay for doctors to not keep up to date and self educate when they have a patient that has illness that the doctor is not currently educated about.
It is also not okay for doctors who cannot determine why a patient is ill to jump to psychological reasons. Too many doctors write their patients story for them. They label patients anxious, depressed etc. Shameful way to practice a medical science that should be based on science not on guess medicine. It is also not acceptable for doctors to only allow 10 minute appointments for patients with chronic disease and then berate them for looking for answers on the internet. Doctors don’t have the market cornered on being the only people to be able to comprehend medical research data. That is just arrogant and harmful to patients. All patients should be responsible for their own health and should become educated on their health concerns. There is hreat deal of pier reviewed research on any health condition on the internet, alot of which most doctors have not kept up with.
Many doctors in Canada have limited their knowledge base to only what they were taught in medical school or what the pharmaceutical salesman has to offer. There needs to be a revamping of the medical schools and a new attitude based on building relationships with patients and perhaps making less money. Most doctors are their own bosses and can certainly slow down and do a better job with patients and do a better job with keeping up to date on the incredible research out there, even if it is outside their limited teachings.
In this very brief talk famed cancer researcher Dr. Neil Spector and author of “Gone in a Heartbeat” shows how Infectious disease doctors have left their medical colleagues out to hang and dry. This came about in 1994 when the insurance industry red-flagged Lyme as being too expensive to treat. There have been no advancements in diagnostics or treatments since then.
-“How to Hack Lyme 101”, Lyme Innovation, Flash talk, Dr. Neil Spector, YouTube 16-
05-31: https://www.youtube.com/watch?v=z1AmztGOvnk length 16
Article related to ‘Medically Unexplained Symptoms’ and likely discrimination.
The Science Isn’t Settled on Chronic Lyme, Deusenbery M, Rehmeyer J, Medical Examiner, Slate 18-06-27: https://slate.com/technology/2018/06/the-science-isnt-settled-on-chronic-lyme.html
It is uplifting to see that you are human enough to realize that science is far from knowing and being able to cure or alleviate suffering. And where many doctors start directing their frustrations at the patient, or worse use the old “la belle indifference” (hysteria) which has now been coined into the word “psychiatric”, or “psychological overlay”. And it’s very convenient as a tool, simply to pencil that onto a chart to further frustrate and alienate a patient. The chart is mostly read and agreed with by other doctors, often because within a system, doctors are afraid to openly disagree with each other. Columbia University has a program for it’s med students called the “narrative medicine program”….only thing is, hopefully it takes root within the student’s future practice. There is a huge disconnect between doctors and patients, and it is laced with power and ego. I think most patients do not need hand holding. It is simple, if I say I have a headache, believe me.
Thank you for your honesty and reflective practice. I have no doubt that your openness, caring and compassion towards your patients is therapeutic in and of itself.
I offer a couple of examples of team-based models in NS that treat patients such as you describe.
http://www.nshealth.ca/content/integrated-chronic-care-service-iccs
https://www.nshealth.ca/service-details/Centre%20for%20Emotions%20and%20Health
Also highly recommend a book by Dr. Bessel van der Kolk: The Body Keeps the Score- Brain, Mind and Body in the Treatment of Trauma
I believe one problem for physicians in Canada is that they can be restricted with ordering certain tests that have been deemed by clinical practice guideline developers that the provinces provides funds to (conflict of interest with the insurer providing funds for their guidelines?) to not have enough robust evidence for the test to be covered by the province. Inclusion criteria as to what studies are included in the development of a guideline can be quite arbitrary of course. I don’t think many patients understand the restrictions that physicians are under.
Lyme and tick-borne diseases are vastly underreported in Canada [multiply official figures by 12]. Lyme is the 2nd great imitator. The early symptoms are much more diverse than the much over-emphasized bull’s eye rash, fever etc. Many cases go undiagnosed or under-treated. This is a multi-system, multi-staged, life altering, life threatening disease that can mimic many others. All specialists have seen it but usually can’t put the clues together and the patient winds up with an inferior diagnosis of MUS, chronic fatigue, fibromyalgia or the disease is mistaken as MS. ALS, Parkinson’s etc. left untreated it goes on to produce are most expensive disease, Alzheimer’s. The North American tick maps line up very well with our complex neurologic disorders.
I am an 82 year old widow. My husband died Feb. 2015. He was the type of individual who always wanted to seek out an answer for plaguing health problems.
I, on the other hand, never did the same because I felt, probably no answers. I just put up with whatever was bothering me and treated it myself…..
I think the answer is to NOT expect that EVERY sign and symptom can be treated and stay home. !!!!!!
Thanks for directing our attention to this issue, Alison. It calls to mind for me the case of one patient who over the course of 23 years received 7 different diagnoses from various physicians as his illness progressed from one stage to the next. None of the diagnoses seems to have been an exact fit for the presenting symptoms at any given stage. In some cases it appears that certain symptoms that didn’t fit the proposed diagnosis were simply set aside as not significant. It makes me wonder whether some physicians in these situations, not knowing exactly what the particular illness might be and perhaps wishing to avoid having to say “I don’t know” to a worried patient, choose to offer a diagnosis that seems “close enough”.
Physicians need to listen carefully and respectfully and work with the patient as an expert in their own symptoms/condition to find solutions (however imperfect and perhaps just “good enough”). Develop a trusting relationship. The patient often carries knowledge and wisdom that health care professionals don’t tap into enough. Ask the patient or family member if they have ideas or hunches about what might be wrong and work through those. It’s a team effort.
Good read Alison. I am currently experiencing this frustration. It started in February of this year, with lower left quadrant pain and has snowballed into a myriad of ambiguous symptoms. Being quite young (39) also does not seem to help the situation, as I find you become “written off” a lot of times solely based on being younger, and that you are just another member of the general public with a “stomach bug” As your story states, I have visited GI, rheumatoid specialists and explored other avenues including osteopath and naturopathic options with little to no relief. The amount of time, resources and continuous immaculate blood counts is frustrating to say the least. As a patient you do expect some sort of answer or path to go down based on a diagnosis, to remedy the situation, however this isn’t always cut and dry. I understand it is obviously important to rule out anything sinister or life threatening and have done so with blood work and imaging tests, however I feel I have exhausted all of my avenues and at this point with no definitive path. I conduct my own troubleshooting and experiments with diet, supplements and exercises as well as conducting my own online research, however find it is flooded with a lot of conflicting information. In the end, hopefully with trial and error and time, I can overcome this.
Hi Rob – there is increasing evidence that certain toxins in familiar foods are the underlying causes of many chronic conditions. I hope this is useful for you …See here for references: https://foodintol.com/references-from-medical-journals
I like the idea of the anchor. What about saying ‘I don’t know the answer, but I will walk beside you through this, and support you to the best of my ability?’
Few doctors have the humility to want to do so. They believe that is involving themselves ’emotionally’ with the patient and after all, medical people have to distance themselves from patients as taught in school, lest you ‘burn out’. No one ever told them that the work of keeping a distance is exhausting and results in unrectified frustration which will fall onto the already vulnerable patient. We are seriously going backwards in healthcare and there are many reasons. I’m afraid the humanness is going away. The problem is, most doctors are very young and their emotional brains not yet developed when they enter med school and from there on it’s a slippery slope. I do feel sorry for doctors who lack insight into a patient’s narrative. Life is difficult for them also, but still no excuse to drag the sick down along with that.
Excellent read Alison. My own personal experience is with a diagnosis of “conversion disorder” which was applied very shortly after a few tests didn’t show anything “organic”, to use a popular term some medical professionals use or misuse. I won’t get into the specifics of a diagnosis of “conversion disorder” in my particular case, suffice it to say that I do know that some neurologists will use this diagnosis and tag a patient quite quickly when they simply don’t know what the neurological / neuropsychiatric symptoms represent and I find this disturbing, see link to peer-reviewed article below for implications for such a diagnosis. As you say, tell the person you don’t know what the problem is, to me this is a more genuine response from the physician and tell them they would like to follow you for a period of time to see how you are doing and any change in symptoms etc. To shuffle the patient off to psychiatry with a diagnosis of “conversion disorder” very quickly is, IMHO, not the correct action in many cases I believe.
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Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms
“Conversion Disorder (CD) is a diagnosis offered to explain signs and symptoms that do not correspond to recognized medical conditions. Pediatric patients with variable, vague, and multisystem complaints are at increased risk for being diagnosed with CD. Little is known about the impact of such a diagnosis. In making such diagnoses, it is likely that pediatric providers hope to encourage patients to access mental health care, but no basis exists to show that these diagnoses result in such access in any useful way. This article presents the case of a child with Ehlers-Danlos Syndrome, who had been previously (incorrectly) diagnosed with CD and referred for mental health care. It offers commentary based on interviews with other pediatric patients with similar experiences – conducted in collaboration with the Ehlers-Danlos National Foundation. These cases indicate that CD diagnoses can seriously undermine patients’ trust in doctors, and can create such defensiveness that it may interfere with (especially) patients’ abilities to engage with mental health services. Such interference is an important problem, if the diagnosis is accurate. But, in the (more likely) event that it is not accurate, this defensiveness can interfere with both important mental health care and further ongoing necessary medical care.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000178/
Why would anyone accept a sham diagnosis such as “conversion disorder”? Even the physician who writes it on a chart is smart enough to realize it is bogus. Why he or she still jumps to the old standby ‘mental health’ issues is a sign of incompetence and cop out. This has become the egotistical diagnosis to protect an ego and get rid of a patient. It makes me angry that any qualified doctor uses this, since he is in NO position to be a shrink nor is a shrink in any position to be a physician. Many patients get put into this trap, everyone knows about it’s powers, most are bright enough to realize it’s a non diagnosis, simply made up by the DSM and we all know how accurate that bible is. Start trusting your own body, write rebuttals to your charts. Conversion disorder is the biggest lie to creep onto the physicians charts.