The Good Hematologist
What is a good hematologist? What professional behaviors during a consultation and thereafter affect the outcome of our MPNs? Are there some characteristics of the good hematologist that are particularly helpful — or hurtful? Five seasoned MPN patients provide some useful guidelines torn from the pages of their own experience..
What makes a good hematologist? That’s a great question but I think it needs a qualifier. ‘If you have a rare or uncommon disease?’ And depending on where one is in the disease process.
I am a newbie on this MPN train. I was diagnosed less than four years ago but have been treated by five hematologists at this point. Two I either fired or ran away from, one moved out of state, so now I am left with what I hope will be a good team until one of them retires!
The hematologist must be a good diagnostician. The doctor must be willing to consider out of the box diseases when faced with a set of clinical signs and symptoms that don’t fit the typical blood diseases.
When the doctor is prepared to reveal this life changing news to the patient he MUST be confident with his dx. No uncertainty in his voice. Uncertainty conveys the impression the doctor doesn’t know how to treat the disease. My very first hematologist hesitated when telling my my ET dx over the phone. Because I had done some research on MPNs that little hesitation was enough to cause me to worry he couldn’t treat the disease properly. So I ran away from him and didn’t go back.
Doctors must have some good counseling skills when giving a patient life altering news. They need to understand the fear and uncertainty they have just created in the patient. This is life changing news! When the disease is as unpredictable as an MPN doctors must expect patients to develop a certain level of anxiety.
I wanted to be a ‘good patient’ so I developed a list of questions between visits with my hematologist, planning to ask when I saw him again 3 months later. Imagine my huge surprise when I learned this medical group scheduled my second visit with the nurse practitioner and not the doctor! Tell the patient when scheduling the appointment who they will see. Do not surprise the patient at the appointment!
Don’t tell a newly diagnosed patient with ET to get thee to a bone marrow transplant center ASAP. That is a dead give away the doctor doesn’t have a clue about MPNs!
As the patient becomes more comfortable living with a chronic illness, accept the patient as the lead player in the health care team. Treat knowledgeable patients as equal members who want to be well informed about MPNs and expect their hematologist to learn from the experts as well.
MPN’s are very unique. Many hematologists despite their stellar credentials and extensive experience lack the basic knowledge to effective management patients with Polycythemia Vera, Myelofibrosis, and Essential Thrombocythemia. In itself, this does not mean that he/she is not qualified to be a good hematologist for MPN patients
Rather than stating what really makes a good hematologist and defining their capabilities I suggest a modification: What makes a good hematologist for you? Our healthcare providers should be able to provide the level of care required by an MPN patient. The ability to interpret a CBC or a blood smear is only a small part of the picture. Some of us have the benefit of living in areas where hematologists that specialize in myeloproliferative neoplasms practice. Most of us don’t.
Treatment of an MPN is complex and fluid. The physician must not only be proficient with regards to MPNs, but he/she must have other traits that are required to treat us. I believe that any physician can be your “MPN Specialist.” It can be a hematologist, a family doctor, an MPN specialist or a physician of another specialty.
I have met MPN specialists that in my opinion simply do not care despite their extensive knowledge and I have met others that care so much that they go as far as to give the patients their home phone number and they call to see how one is feeling.
Your hematologist should be able to follow the “Cool Rules” listed below. If so, he or she would probably make a good hematologist
Rule #1 – Learn as much as they can about you and your MPN so that they can properly treat it. If they are unwilling to learn, they are not for you.
Also, you should educate yourself as doctors are human and make mistakes. Many mistakes can be avoided if you know and understand your disease.
Rule #2 – Accessibility – Your hematologist should be accessible. MPNs come with a host of psychological and physical symptoms. Your hematologist needs to know, understand, and BELIEVE that just because you don’t look sick, that what you are feeling is real. Make sure they are willing to take your calls, answer your questions, talk extensively, respond to e-mails, and do research for you. AVOID the boiler room doctor who just sees 35 patients in one day and won’t even remember your name
Rule #3 – Do not feel discouraged if you do not find someone that fits the bill the first time you see them. It may take 3, 4, or 5 interviews to find the right hematologist for you.
Rule #4 – If you are not seeing someone who is an MPN specialist, make sure that they are comfortable consulting with one. A doctor who thinks that he/she is too good or “smart enough” whereas they do not need to consult with a specialist may not be the right doctor for you. Many ailments can be treated from a textbook, I do not believe that MPNs are one of them.
Rule #5 – Educate your doctor. Remember, unless you are seeing an MPN specialist, they are highly unlikely to have a lot of MPN patients which will mean that despite how educated or intuitive they are, they may simply not get things. As a patient you should try to know as much as you can so that you can ask questions that will prompt your doctor to do the research.
Rule #6 – See one doctor, get to know him/her. Do not go to a practice where you are rotated and see a different physician every time you visit.
Rule #7 – Make sure your hematologist is open minded. Not only to treatments, but regarding your concerns, worries, trials, and even SCT if necessary. I would not get someone who is set in their ways and will only treat based on what they learned in Medical School in 1973.
My humble opinion
I think this discussion could take a two-pronged approach. If you live in a city that has an MPN expert (NYC, Dallas, Phoenix, Chicago, etc.) and he/she is your normal hematologist, then your expectations will be considerably higher.
The search for a good hematologist at the local level (in a small or mid size city) can be a challenging, sometimes frustrating journey. As a patient, we need to arm ourselves with the proper resources to make an informed decision on selecting a competent hematologist. (MPNforum, PV Reporter, Patient Power and numerous MPN Facebook support groups, and email lists share a wealth of information)
A good hematologist begins with a doctor who talks to you on your level. One who will review the latest research and look beyond “old school textbook teachings” in a rapidly advancing world of new MPN discoveries. For example, I tend to be rather symptomatic when my HCT crosses 42, as opposed to 45 which was considered “the gold standard.” The presentation of a recent research report recommending a target HCT of 42 was enough for my doctor to consent to phlebotomy at this level. Working together in a collaborative environment where the patient can openly share research with his or her hematologist without the fear of rejection or intimidation is essential.
A good hematologist will openly discuss the risk / reward factors when he is prescribing medication or recommending a new treatment plan, that many times is a decision ultimately made by the patient (i.e – phlebotomy, HU, Pegasys). If it is determined that cyto reduction therapy is needed, he should explain what factors led to the decision and be prepared to define treatment goals in a clear and concise fashion.
The hematologist should not be focused on entering symptomatic data into the computer (patient record) without talking to the patient directly, in an open and honest way. He should be willing to readily provide copies of test results and to proactively review results from the previous visit.
At the end of the day, if your needs as a patient are not being met, you should feel comfortable “firing your doctor” and seeking a more suitable partner for your MPN healthcare.
Give me the facts, straight and plain. I’m a biologist and I want to hear the science behind the disease. I don’t really want empathy or hand holding – I mean it’s nice, but that’s kind of what my husband’s for, right? I had to find a hematologist quickly when I was diagnosed, and I had no idea who to choose on the list of local hematologists – they were just names. At random, I chose Dr. David Joyce from the list. It was exactly the right choice for me. First appointment – clear and direct, good eye contact, told me a lot of things about MPDs (this was the old days before we all switched to MPNs) that didn’t fully compute (but my husband was along getting all the details), said that all my blood work pointed to ET but that I needed a BMB to complete the diagnosis. Then we would look at treatment options and discuss – probably start with some iron infusions, then we would talk about a drug called hydroxyurea.
By the time the BMB rolled around a few weeks later, my platelets had soared to 2,230 and my migraine auras were getting worse. He waited until the BMB was over (phew), and he told me I needed to start hydroxyurea NOW. And went through all the possible side effects, and reiterated all the information about MPDs and that I probably had ET. And that it could convert into Acute Myeloid Leukemia and – he broke off in mid-sentence, looked really concerned, put his hand on mine, and said “have I used the “L” word with you before?” and I started laughing. I had the clear sense that he had been told in some ‘bedside manner’ class that when you use the ‘C’ word (Cancer) or ‘L’ word (Leukemia) you have to stop and let the patient process the information and be ready for an emotional response and so on. In point of fact, he had already told me this in our prior visit, so I wasn’t surprised – I just thought it was really cute that his training was kicking in and that he wanted to be empathetic.
As I’ve gotten to know him through the years, I’ve found out that he was previously a lab research scientist for Lilly, fell in love and married an oncologist, and now they are in a practice together. How perfect! Here are the things I think make him a good hematologist:
As a general hem/onc, he really can’t keep up with the latest research on every branch of cancer out there, but he gladly takes any articles I bring him and is open to discussion about them.
He encouraged me to get a second opinion, and wanted to hear all the details about my appointment with Dr. Reuben Mesa, and we discussed at length how my treatment might change based on what I learned.
He is excellent at sending information to my family physician and gynecologist. Both have noted (with amazement) how regularly he sends detailed information about me to them. This is key – my other doctors really have to understand what ET is and what they should be thinking about as they treat me for other maladies, and he makes sure they have all the information they need.
He lets me call the shots on my HU dosage. I keep my platelet numbers where I’m most comfortable (~500) by adjusting the dosage as needed, and just check in with him if I’m concerned about my numbers (and when I see him twice a year for a checkup). I like having control over my medication.
What makes a good hematologist makes for an interesting question and discussion. I would think we would all agree we are looking for a hematologist who will provide us with the best opportunity to live the longest period of time with our diseases. Most of us are going to spend a great deal of time with these folks. I have been going to Stanford now for twenty-five years and my relationship with Dr. Schrier has evolved. I have friends I do not know twenty-five years. Nor have I been able to remain in a relationship with anyone that long. Nor is this a simple question to answer.
From the first Witch Doctor to today’s physicians we continue finding ourselves placing our doctors on pedestals. Treating them as if they have all mighty powers to heal us as if we should bow to their commands. This makes having a good relationship with another human next to impossible because we have placed them above us. Its something to think about because how you view yourself as the patient and what your role is will reflect on the type of hematologist you may wind up with.
The hematologist that I feel is best for me may be different than the type of hematologist you want advising you. The risk of course when we are the patient and blindly follow or trust a Doctors advice in the MPN World can lead to a premature death.
One of the early challenges for the newly diagnosed MPN Patients is most start off day one having never heard of the disease previously. This starts the patient off at a severe disadvantage, forcing them to rely heavily on the experience of the hematologist they are meeting with little to add. This plays right in to the psychological aspect of the Doctor taking the dominant role in the relationship, which is not healthy.
When I was first diagnosed it was by a local hematologist and my local physicians both with their own one-man practice. I would have stayed with the hematologist even though I could not stand the way he treated me. My uncle called someone he knew in the Hutch Center in Seattle and they referred me to Dr. Schrier at the Stanford Hematology Clinic. At the time Dr. Schrier was the Chief of Hematology at Stanford so I assumed I was in good hands and never even thought of getting a second opinion. They must BE capable of having real and meaningful conversations with me and be willing to listen to me in return. A good hematologist thinks about how they should phrase their comments based on the personality of the patient and work with wide variety of personality traits.
Good hematologists must be able to draw out the type of information he needs when dealing with his patients. Doctors Richard Silver and Ruben Mesa are for me excellent examples of Hematologists that understand the importance of having strong relationship with their patients. From a generation perspective you could not find two hematologists on more opposite ends. Yet they both exemplify the highest standard in patient care. I have never felt rushed by either of these Doctors.
Dr. Silver more than any other hematologist redefined for me the role of the patient in the process. He explained that as patient it is as much my responsibility to be on top of my disease as it is the doctors. I should never be afraid to challenge him or anyone else about treatments. He added that the more educated and involved I am with the entire process the more involved the hematologists will be.
Dr. Mesa has spent a lot of time with me making quality of life an important aspect of treating MPN patients. His compassion and support for me as well as his compassionate understanding that ultimately all major decisions are mine and mine alone is immensely helpful to me.
A good hematologist also demonstrates patient awareness. As we all know from our recent discussions depression is a big issue with our MPN’s. A good hematologist will look for the warning signs and ask the right questions that lead to a fruitful discussion on the subject.
Defining what a good hematologist is will vary from patient to patient. I do think it’s important to remember that a good hematologist also requires a good patient. A patient who’s willing to push the hematologist along to make sure the right questions are being asked.
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