Communications with a medical team will often contain complex information. What would be the most important questions a patient should consider asking to let the members of the medical team know he/she needs to have concepts and specific instructions explained again?
With bone marrow failure disease, the diagnosis might be a little murky or unclear because of the degrees of various overlap syndromes that can occur with myelodysplastic syndromes (MDS), aplastic anemia, and paroxysmal nocturnal hemoglobinuria (PNH). Sometimes, it truly can be hard to tell where one disease stops and another one starts.
It is ok for a patient to say “I don’t understand. Will you please rephrase or restate the diagnosis in a different way?” I’m encouraged when my patients ask this. It shows that they are engaged and intently listening and want to understand what I have said.
Another thing I encourage, especially on the first few visits, is for a patient to bring a family member or close friend and ask that person to take notes or even make an audio recording of the conversation to capture what the physician and the clinical team are saying. Often, with everything occurring at once, there will most likely be something that the patient missed in the discussion. It’s good to have another person who can remind you of what your doctor said.
What resources are typically available when there is a language barrier between doctor and patient?
What type of questions should be addressed by the doctor and what questions should be addressed by the nurse?
With your doctor, make sure you have a clear understanding of the diagnosis. That being said, your blood disease diagnosis may be a mixture of blood diseases. For example, your MDS may have some elements of aplastic anemia and PNH. When discussing prognosis, ask how your doctor came up with the life-expectancy estimates. Also ask how your prognosis will change with the various treatments. During the treatment discussion, ask about all available options.
For each treatment option ask about the benefits and risks. Your doctor should be able to give you specific percentages based on the published literature. You should also ask your doctor how many patients he/she has treated with each treatment option and what his/her individual experience has been. Finally, your doctor should also explain how he/she would provide blood transfusions, and prevents and treats infections and iron overload.
Nurses typically focus on the important topics of pain, side effects, fatigue, diet/exercise, taking medications, and central venous line maintenance. Social workers can help with accessing resources such as housing, transportation and food assistance. Financial representatives can help explaining your health insurance benefits, limitations, and out-of-pocket payment expectations.
How do you tell your doctor that you want a second opinion?
Many patients are reticent to get a second opinion because they don’t want to offend their doctor. But in actuality, it’s usually the doctor that initiates the second opinion. In my experience, most doctors welcome a second opinion. For diagnosing and treating blood diseases, more information and perspective is helpful.
My guidance to my patients is that if you’re wondering about getting another opinion, do it quickly. With blood diseases, time is usually of the essence. Thus, the second opinion, if requested, should occur rapidly.
- acute myeloid leukemia (AML)
- aplastic anemia
- myelodysplastic syndromes (MDS)
- myeloproliferative neoplasms (MPN)
Dr. Cogle is an associate professor of medicine at the University of Florida, Gainesville. He has clinical and research expertise in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML), and allogeneic hematopoietic cell transplant. Dr. Cogle leads a research laboratory that studies the biology of MDS and AML, and his group has successfully translated his discoveries into new treatments for patients. Dr. Cogle’s goal is to fi nd cures for MDS and leukemia, educate patients and providers about the distinct heterogeneity of these diseases, educate policy makers that blood cancers are a public health concern, and advocate for patients to get the best care possible.
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