The NTM Doctor/Patient Relationship

Would we think of becoming involved in a business transaction leaving things to chance? Why do people allow the direction of their doctor’s appointment to go forward on someone else’s agenda?

Some people allow their medical providers to orchestrate their appointments, and then subsequently feel frustrated because they find themselves in a void as far as how to proceed. It is important for patients to take charge and plan well before our appointment. Under the current medical system, many doctors find they are unable to give us the time they would like, so it is essential to make the most of the time you are given. Your physicians are not mind readers, so communication from us is important. As you read further, you will find that doctors appreciate good planning on the part of their patients.

Methodology: A request for suggestions on how to make the most of your appointment was sent out to a physician database prior to a Nontuberculous Mycobacteria (NTM) support group meeting. In addition, we received input from our members as to their expectations from their doctors. The information from all the responses was merged and collated into this document. An attempt was made to include all the important points.
 

TIPS FOR MAXIMIZING THE EFFECTIVENESS OF PATIENT APPOINTMENTS

Before Your Appointment
Write your list of questions BEFORE your appointment with your physician. It is efficient to prepare no more than 3 of the most important questions, or if your list is longer, prioritize your questions.

Bring a current medication and supplements list, including dosage size in mg., how many times daily you take it, date started, relationship to meals or at bedtime if relevant. Also include medication allergies or side effects with date(s) and details of reaction, preferably typed. If this is not possible, bring all medication bottles. Believe it or not, it is easier to read names and dosages on the medicine bottle than handwriting. The medicine bottles also provide the phone number of the pharmacy. Some group members mentioned they keep a typed list of medications on their computer, which is easily modified and printed out for their doctor(s) appointments.

Some patients organize a diary. It can include some of the most important symptoms, changes to medications such as new antibiotics that may be necessary since your last visit, significant events that happened since the last visit, pneumonia, hospitalizations, any new procedures (surgical and otherwise) and their dates. The results of your ENT/sinus history, GI/reflux history/allergy history is also important to your respiratory history.

Bring a list of new doctors and other treating physician information including first and last names, addresses with phone and fax so that a report may be sent.

Prepare relevant CT scan and other imaging studies on CD including reports and either bring with you or send to office prior to your appointment. Prepare copies of relevant reports and lab data including copies to leave with the physician. Please do not ask your doctor to make copies for you during your appointment. If you cannot make your own copy, ask the doctor’s receptionist to make you a copy prior to the consult with your doctor.

If possible, ask a family member, friend, caregiver or patient advocate to accompany you to the appointment to jot down notes or to provide extra listening. This is a complicated disease with lots of patient education. Often, it is difficult to comprehend all medical information provided at visits especially the initial and subsequent few visits.

At the Appointment
Find out how much time you will have with your doctor. This way, the patient and doctor alike can plan their time wisely. Give details of the specific symptoms and illness for which you came for this consultation.

Submit your list of questions to your physician at the beginning of the appointment. The physician is then able to guide the appointment keeping in mind the goals of the patient. The meeting should revolve around patient concerns that she/he needs answered before leaving the office.

Alert your doctor how many things are on the list of questions so the doctor can plan the time wisely. If you spend too long on item #1, you will never get to item # 10.

If you don’t understand something (medical lingo), ask for clarification. So many patients don’t want to feel stupid. Doctors sometimes forget they are speaking in “technicalities”.

Provide the phone number in writing of any relative/friend you wish the doctor to call at a later time. HIPPA laws require patient approval since all personal medical information is confidential unless permission is given by the patient to release information.

If on NTM medications, provide information on side effects and report any new meds provided by other physicians since your previous visit.

Ask the doctor if there is a need for special assistance with auxiliary services. If so, have the nurse or support staff arrange for those visits at same appointment day (respiratory, meds/IV therapy, demo for special home equipment, social services, nutrition, etc.).

Ask about future appointments - date/time.

After Your Consultation
If possible, schedule your next appointment prior to leaving the office. Ask or remind support personnel to provide equipment or arrange for delivery prior to leaving the office. The doctor should provide special instructions prior to your next appointment such as sputum cups, etc.

Between Appointments
Prepare a list of questions in between visits. If you need answers between visits write everything down before calling the office.
 

PHYSICIAN REMARKS

** Physician must always show compassion! Very important**

Physician/patient meetings need to be timely meaning no extended waiting prior to and during appointments. Patients are weak and tired. And physician time is important. The doctor needs to stay on schedule for the benefit of all patients.

Be prepared for the physician to ask about details of your current and past related illnesses in an order that may be different from that which you are prepared to recite. Each physician organizes a history in his or her mind and that organization may not be similar to your planned presentation of your story.

Understand that aspects of your overall medical history that your/other physicians have not “connected” to your medical history may be relevant to your “new” consulting physician, e.g. rheumatologic history, past occupational/environmental exposure, etc.

A good consultant/detective starts “at the beginning” and may seem to dwell on aspects of the history, which to you may seem redundant or passé. He or she may seem to be “challenging” your statement of fact when the process of being certain of every aspect is critical to breaking a case that until now has been a mystery. For example, you may not in fact have asthma simply because other physicians in the past have told you that you have asthma.

Your physician relies on every aspect of the investigation in order to get it right for you. His or her diagnostic capability is “only as good as the weakest link” in that diagnostic process and thus he/she may ask you to see other physicians or have diagnostic studies at facilities that have, in his/her experience, “gotten it right” for that doctor in the past.
 

PATIENT COMMENTS

“I think the most important things for me regarding medical appointments is a list which clarifies my goal for the meeting and remembering that I am in charge of my own medical care and to sift out what is useful and discard the rest. This is particularly helpful when one’s doctors do not agree, or when the patient is balancing multiple maladies in which treatments conflict.”

“Be sure to clarify doctor’s questions and statements when not understood.”
“Make suggestions to your doctor and ask questions.”

“I keep a medical journal and write in it every day which I keep on my phone which syncs to my computer as a backup. I reread it when trying to figure out what may have contributed to specific medical symptoms.

“Ask for any forms that need to be filled out prior to your appointment. Often when filling out the forms, you may find it can trigger questions you may wish to ask your doctor at the appointment.”

“Ask that your test results and medical records be sent to your doctors. Do not assume they will be sent automatically. Some doctors charge patients for hard copy records, but will send records electronically at no charge.”

If the doctor’s office is located in a hospital, the support staff may have been hired by the hospital and may not be of the doctors’ choosing. Some of the patients in the group have been dissatisfied and frustrated with the competency of the support staff in their doctors’ offices. The support staff has to expedite such things as medical records, communicate with other doctors, arrange therapy, etc. Try to communicate your information or requests as simply as possible. Follow up when necessary in a courteous manner.”

“The doctor should consider, respect and comply with treatment choices for the patient. The doctor should consider alternatives for the patient when available if the patient does not agree with the one suggestion presented. Treatment should be worked out between doctor and patient”.

6 WARNING SIGNS THAT YOU MAY NEED A NEW DOCTOR -
AARP Magazine, Aug.-Sept., 2013

Keep in mind that your doctor should be treating you with your best interests in mind. If you feel this is not the case, you have the ability and responsibility to see another doctor. In many cases, your present physician may lack an in-depth knowledge of NTM, so it is up to you to be proactive if you are dissatisfied with your care (not getting the attention you deserve, health not improving, etc.).

So how do you know if your doctor isn't "the one"? Your gut is often your best guide, experts say. But here are a few warning signs that you might need to give your doctor the boot, courtesy of geriatrician James Pacala, M.D., of the University of Minnesota.

Be wary of a physician who:

  • Dismisses every complaint, blaming age.
  • Insists that nothing can be done. There is always something to try.
  • Spends too little time with you, or interrupts you frequently, especially if you're a patient with complex, multiple issues.
  • Writes a prescription with minimum discussion.
  • Recommends treatments without considering your lifestyle.
  • Prescribes a variety of medications and procedures, or keeps referring you to more specialists without any improvement.

Remember, it is up to you to be your own advocate and find the best medical care. You, the patient, are an important member of your medical team.

Debbie Breslawsky
An NTM patient, Debbie Breslawsky is involved in NTM advocacy. She founded her first support group in New York in 2003, and has since founded one in Palm Springs, CA and another in Connecticut, as well as an on-line group. She serves on the National Jewish Health Board of Trustees as well as on the Board of NTM Information & Research.