Life With PH: The Doctor Will Not See You Now

Life With PH: The Doctor Will Not See You Now

In Life with PH

Pulmonary hypertension is the great impersonator. Before I received a proper diagnosis, many medical experts tried to tell me that I had asthma, had been poisoned, or had anxiety. Pulmonary hypertension wasn’t even on their radar. When a young person comes in the ER with shortness of breath, doctors think asthma, not pulmonary hypertension. They hear hoofbeats, and think horse, not zebra.

People with pulmonary hypertension and other rare diseases are often described as medical zebras. This is based on a theory coined in the late 1940s by Dr. Theodore Woodward, who told his medical interns that “when you hear hoofbeats, think of horses, not zebras.” Horses are more common in North America that zebras, so the aphorism intends to remind doctors not to suspect exotic illnesses when commonplace ones are more likely. Although this is clearly not always the case, Dr. Woodward’s saying is still used widely in medical circles today.

The day that I was diagnosed, I walked into a room with a medical student in it. I saw a student before the doctor (even though everyone but me was well aware of my diagnosis at this point). She asked me a bunch of questions, and examined my body in a few places. This is something I have reluctantly become accustomed to.

Having a rare disease makes me a good project for medical interns. These students are learning to question whether the hoofbeat is coming from a horse or zebra, instead of just assuming the most common diagnosis.

I feel disappointed everytime I walk into a doctor’s office and see someone my age waiting for me. Doctors are forgetting that I woke up at 5:30 a.m. and drove two hours, and then waited in the waiting room for 1 hour and 45 minutes to see them. I want consistent treatment. Not to be treated like a lab experiment whenever I go for an appointment.

While I do want the future generation of medical professionals to know about pulmonary hypertension, it would be nice if I could give my consent. I have been seen by over a dozen medical students and interns by now. Unfortunately, this takes away from the quality of treatment that I receive.

Medical students and interns will ask me the same list of routine questions that I was asked upon diagnosis, and then they do the same physical exam. These questions are general questions that are asked during the diagnosis process. As someone who is nearly three years past diagnosis, they aren’t exactly needed anymore.

As a result, I end up having a 30-minute consult with a medical student, who tries to explain to me what idiopathic pulmonary hypertension is (for the 57th time). The doctor then comes into the room, and medical student recites the findings back to the doctor. I sit there listening as the medical student recites some of the information I gave back incorrectly, and adds in a few things that I never said.

After the medical student tells the doctor that my heart sounds good, other than “that sound” my appointment is over. The doctor never examines me. The doctor does not check me for heart failure, or to see if I am retaining too much fluid. The doctor never speaks to me, only the student. The doctor never gives me the chance to speak to him or her, or to ask questions.

As someone who tries very hard to be my own advocate, it is very frustrating to go through this sort of “Groundhog Day” scenario of the day I was diagnosed over and over again. I wish that my consent was needed to be examined by a medical student or intern. It gets disheartening to never fully get to be seen by a doctor to discuss treatments, symptoms, and other issues. Or to be given the opportunity to speak. I have become a case study, part of a student’s project, which strips me of the ability to be involved in my own healthcare.

Do you think patients should have to give their consent in order for a medical student or intern to examine them?

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Pulmonary Hypertension. 

Serena Lawrence graduated from the University of Waterloo in 2012, earning an honors degree in fine arts. After she was diagnosed with pulmonary hypertension in 2013 she started the blog called The PHight or Flight Project where she began freelance writing and curating guest writer content. Serena enjoyed a good cup of tea, little adventures, and her Boston terrier named Sammy. In her “Life With PH” column, Serena explored the challenges she faced in living with the disease, and sought to connect with other PH patients to gain insights into how to support the ongoing effort to better treat and eventually cure pulmonary hypertension. She also served as the head of columns for BioNews, the publisher of this website. Serena passed away in September 2018. She continues to be deeply missed by the BioNews team.
Serena Lawrence graduated from the University of Waterloo in 2012, earning an honors degree in fine arts. After she was diagnosed with pulmonary hypertension in 2013 she started the blog called The PHight or Flight Project where she began freelance writing and curating guest writer content. Serena enjoyed a good cup of tea, little adventures, and her Boston terrier named Sammy. In her “Life With PH” column, Serena explored the challenges she faced in living with the disease, and sought to connect with other PH patients to gain insights into how to support the ongoing effort to better treat and eventually cure pulmonary hypertension. She also served as the head of columns for BioNews, the publisher of this website. Serena passed away in September 2018. She continues to be deeply missed by the BioNews team.

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  1. Erica Hutchison says:

    I completely understand your pain, and I am new to IPAH! I don’t mind if the students want to listen to me or do the routine. I understand that they need to learn as much as they can, and this is the only way they can get hands on experience. However, the Doctor should request your permission first, and then double check the student’s work. He or she should be right there in the office during the entire exam.

    • You raise a good point about the doctor being in the room as well. From my experience, I am with the student alone for most of my visit and they just recite everything back to the doctor. There is no way that a doctor could double check a students work from that approach.

      • Rosetta hoag says:

        I would’ve told the intern that my insurance ain’t paying to see them. I would’ve demanded the to see the doctor. People think that having a life threatening disease means our minds our disabled too. I also would’ve said”I’m no one’s lab rat sorry”.People need to be consider other people’s feelings.

  2. Amy Kimber says:

    Serena, have you asked if you can see the physician alone, and not have students? I work at an Academic institution, so I fully understand what you are saying. Sometimes it is difficult to say that a student, resident, or fellow would not be involved in your care- especially if you were hospitalized- but you might be able to make a request for your clinic visits. Have you told your physician or nurse this detracts from your visit? I wonder if they allow this to continue because they think you “don’t mind.” Communication between healthcare providers and patients is so important and this topic may be uncomfortable to bring up, but it is very important. You should not feel like a “student’s case study.” If one of my patients felt that way, I would want them to tell me.
    I’m just trying to think outside the box and help you 🙂

    • Well, it usually happens during first visits. (Like the hospital where I was diagnosed, and then the PH centre where I received my first diagnosis.) It took me a while to find my voice as a patient.

      I see other specialists outside of the PH realm because I have some ongoing issues that haven’t been diagnosed. Unfortunately, other specialists will use my appointment for an intern to treat me as if I am there for PH, and they go through the routine stuff the interns did when I was first diagnosed. They haven’t even allocated enough time for the doctor to see me.

      I have recently switched PH medical teams and am hoping for a more positive experience! I know that students have to learn from patients, especially those of us with rare diseases. I’ve heard from a lot of people with PH who have had only positive things about being treated at teaching hospitals! They feel like there are more eyes on them taking care of them, which is always a good thing 🙂

      From my experiences the doctors aren’t present and the students repeat back their findings so it leaves a lot of room for error since no one is there guiding them while examining me.

      I will certainly let my doctors know that I would feel more comfortable if they were present if a student needs to learn from me. Thank you for the kind words and advice!

  3. Rebecca Ray says:

    I only had that experience when I was in my PCPs office. My Dr was there the whole time as they asked questions. Thankful I have never had this at my PH specialist.

  4. Sue Kelson says:

    Serena, I’m so glad you are doing these posts, as I think you are an excellent writer, and explain thoughts and feelings about PH so well. I think you live in Canada, so the medical treatment is a bit different than the U.S. however, here’s what I would recommend. On your next visit, when the student walks in, politely explain that you appreciate their effort to learn, but you would prefer to spend your alloted time with your personal doctor, as your symptoms are well beyond the beginning stages, and you don’t need to answer basic student questions. You prefer to discuss more relevant questions, and the student is welcome to listen in….but, please as my doctor to come in now. Then tell him you need this time with HIM and your exam with HIM to cover all your needs. He might be a bit shocked, but I would guess that for all future visits your main MD will be available. Mayo Clinic, the finest teaching clinic in the world does not leave the full exam to the student. The student or fellow is in the room, but the regular doctor asks the pertinent questions and does the exam. Keep us posted. Best of luck, and look forward to your next blog ????

    • Thank is so kind, thank you very much!

      I do live in Canada so some aspects of my treatment will be very different to patients living in other countries.

      Yes, part of the issue I have is that the student is completely alone with me and they just recite everything back to the doctor. It leaves a lot of room for error, and there is no way for the doctor to know if the student missed anything. Certainly not a comforting feeling!

      I am going to continue to let my doctors know that I am not okay with this, and would prefer that they be present. Unfortunately this happens for a lot of “firsts” visits. It has happened at non PH related appointments as well. (My visit suddenly turns into a learning experience for a student and I go through as similar process that I went to during diagnosis.)

      Thank you for reading, and thank you for taking the time to offer your support!

  5. Diane Belanger says:

    This happened to me at Mayo Clinic in Scottsdale Arizona. The difference is they had their conference outside of the exam room so I could not hear what the Intern/Resident said. But as always, I request copies of each doctor’s visit including lab work and diagnostic test results, so was able to read that the student did indeed (forget?) change slightly some of my history and add a detail or two that I had not discussed while ignoring others. The senior doctor then came in and without exam just asked me a few questions and based on student’s exam, gave me opinion. Unfortunately, while trying to get diagnosed even WITH TWO right heart catheters which showed mean pulmonary pressure at 25 and the end result showing “Pulmonary Hypertension”, this diagnosis was rebuffed by three Pulmonologists (one outside Mayo) and several Cardiologists. The so-called PH Specialist whom I insisted upon seeing again a year later as my shortness of breath increased, opined that I did not have “it” as I would be in a wheelchair a year later if I did, and it was his nurse’s opinion (who came in to take my vitals after being escorted to the exam room and resting for 10 minutes after the long walk from waiting room back to exam rooms) that I did not appear short of breath. I already was on several medications for Asthma. This doctor said we may never know why I feel short of breath, then sent me to an “Integrated Medicine” doctor, who spent over an hour with me and finally told me after a series of questions and watching a short video, that I had anxiety and explained (with a diagram!) that we all need several different components to our lives, and it appears I needed to discover faith(religion) get a hobby, learn to visualize and meditate (which I already carefully explained to him that I learned how on my own and practiced it successfully) and reach out for family and friends’ support. Funnily enough, in his notes he explained how he taught me about meditation and visualization. I have a unique background as in my former life I had a career as a nurse specializing in psychiatry. I explained all this and more to him, yet his notes took credit for much of what I already knew and explained to him about relaxing techniques and biofeedback. I knew why after seeing his bill to my insurance company. He billed $700+ for his supreme guidance. While I only had a small co-pay, I called my insurance company and explained my outrage so they could get it to the proper channels. At their suggestion I also wrote a letter to Mayo Clinic’s main office to detail the whole experience. * As an important aside: Be careful what you sign when you’re a new patient. I have read the small print where Mayo states sometimes they have students and by signing I agree to allow them to take part in my care at the attending doctor’s discretion. I would no longer do that. I would underline that paragraph and write in “Must get my permission each time.” I had my 2nd right heart catheter done there, having one somewhere else the year before, and another a year later there, plus yet another down the line at a different facility. None of them were painful except that 2nd one. There were three doctors in the room doing it as well as two nurses. I was screaming at times and crying from pain and shaking from terror the rest of the time. I had Valium going in an IV and someone holding my hand. I found out later a student was doing his first one on me! I never had cause to let out so much as a whimper before or since during RHC. Sorry for the looong comment, but I had a lot to say. My strongest advice is watch what you sign and don’t ever be a guinea pig for a RHC!

    • I am so sorry to hear about your experience with your doctor, and your right heart cath! That sounds very frustrating, and painful. I hope you have found a team that has better suited your needs.

  6. Madeline Espineira says:

    I was fortunate to have my Scleroderma diagnosed without the insult of being told I am imagining my symptoms; however, diagnosing PAH remained elusive for at least a decade until it was life-threatening. Having had most of my care at an academic facility, I certainly understand your experience and frustration; fortunately, whenever I had a bad experience, I would schedule my next appointment requesting an appointment alone with my doctor. Not always, but periodically as staff turnover occurred, I found it necessary to exclude some medical staff from my appointments as well. Yes, we have a right to consent, just as we have a right to choose our doctors and to choose our treatment from what is available to us. Sometimes, we need to be direct with medical personnel to remind them of our journey, which did NOT begin the moment they opened the door, but much before!

    • Those are all very important tips you mention when being advocates for our own health care! I am currently switching medical teams, and am hoping I will finally find the treatment I have longed for. Trusting your team can certainly make a positive impact!

  7. Wow! That is rough. I’m so sorry that your visits are like that. Before I was diagnosed in December,?I had much of the same in the small place I lived. I have lupus, so it gets blamed for everything. I was already on oxygen and my doctors didn’t even really question why. Finally, when I was so out of breath and my SAT’s were dropping into the 60’s, my doctor finally ordered an echo. That quickly led to a right heart cath and the diagnosis was made – severe PAH. I moved to get better care since I was told I probably had less than 2 years to live (I have interstitial lung disease as well). Even though I am at a teaching hospital (UC Heath – Anschutz Medical Campus in Aurora, CO). Now I absolutely love my doctors. They spend so much time with me directly. Sure, there are medical students and interns, but my doctors never just blow me off. I am very grateful! I have my evaluation for a double lung transplant in early October and am hopeful. If they don’t accept me, I’ll be looking at hospice. I’m now on 7-10 liters of oxygen 24/7. I wish you the very best!!

  8. ann b wall says:

    Dear Serena, I believe as health care professionals ,we feel obliged to review the same information over and over.I agree interns should have oversize. It’s more then a matter of payment ,it’s a matter of ethics.One wonderful physican Dr Steve Paget at HSS had his patients fill out a history and asked what the patient’s goals were for the visit. I filled out the form online ,Dr Paget had reviewed volumes of data and given it consideration before I arrived.Some of what seems rout,can be the health care provider attempting to follow basic practice standards.I agree strongly the attending should be present. One question asked that can help is what brings you here? Sounds crazy ,but review your main symptoms ,overall daily functioning . Is it possible to request appointments with the same attending every visit? I’m trying to keep an app of my symptoms ,I use one for RA. I also find a fitbit helpful as it logs HR, Steps ,activity and sleep levels.What is almost never addressed are the daily difficulties and frustration of living with a chronic disease and the FEARS. I believe you will find the care you need . thanks for a important thought provoking article.

    • I really like the idea of a doctor asking you to set goals for the visit. Often I go to an appointment and it seems like the medical team and I have two completely different goals in mind. I think it is important to allow the patient sometime to ask any questions, or share any concerns. I totally agree about living with the fears certain chronic diseases can impose on one’s life. Thank you, Ann. I hope so too! Thanks for sharing a bit about your doctor appointments with me. It is excellent insight, and will help me navigate my own appointments.

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