Category: Doctors

Fixing a Bad Diagnosis

Last revised” 08/06/2023

By W. Kolber

It may be hard to accept, but sometimes doctors just get the diagnosis wrong. It happens more often than you might think.

According to a 2015 Wall Street Journal article by Sumathi Reddy, a recent study of more than 6,700 second opinions found that the original diagnosis was changed 14.8% of the time, and changes in treatment were recommended in 37.3% of the time. That should make you think about any recent diagnosis that seems off or wasn’t followed by successful treatment. You know you. You live with you your entire life. It’s important that you listen to what your body tells you.

Here’s an example excerpted from an article authored by Kristine Crane, and published in US News and World Report, July 23, 2014.

     Trisha Torrey, had a golf-ball-sized growth in her abdomen misdiagnosed as a rare and fatal tumor. Her surgeon removed the growth and wanted to start chemotherapy immediately. Trisha didn’t sleep for weeks as she researched her condition. Meanwhile, Trisha’s test results, including a blood work and CT scans, showed no sign of any cancer. Trisha asked the doctor for a second opinion. However, her doctor said that her condition was so rare that no one would know more than him. This is what finally set Trisha off to start advocating for herself.

     She asked for her medical records and found missing test results. A friend helped her to find another doctor. The new doctor sent Trisha’s test results to the National Institutes of Health (NIH). Their diagnosis was that Trisha did not have cancer at all. She had an inflammation of her fat cells. While this mistake cost Trisha a great deal of her savings, it saved her the cost, pain, and emotional stress of undergoing unnecessary chemotherapy.      

When you’re unsure of your diagnosis…

  • Step 1: Investigate further.
  • Step 2: Request copies, digital or print, of your medical records when you check in for every appointment or procedure.
  • Step 3: Contact your health insurance provider to discuss your needs for a second opinion.

     You should get a second opinion in all cases when you are diagnosed with a major illness or condition. The most common areas for second opinions are cancer, neurology, cardiology, and orthopedics. Many times your insurance provider will require a second opinion before approving reimbursement for an expensive treatment.

Since doctors are viewed by most people as trusting, caring and honest, it is easy for any patient to feel like their doctor will be offended if they seek the opinion of another doctor. Do not let this feeling prevent you from getting a second opinion. Good doctors are comfortable with their patients seeking the opinion of another doctor and often encourage it. Just because a doctor is nice or has a good bedside manner doesn’t make that doctor a good clinician. If your doctor is nice it’s an extra added bonus. Don’t assume that the doctor who gives you better news is the correct one, either. Just because you like the answers the doctor gives you, does not mean that doctor is right, and don’t assume the doctor who gives you a second opinion is correct either.

Times when you should consider getting a second opinion include when:

  • You have been diagnosed with a rare or life-threatening condition.
  • More than one treatment option has been recommended.
  • Your diagnosis has not been confirmed, or it is unclear.
  • You have multiple medical conditions.
  • The recommended treatment option is risky, controversial, or costly.
  • You are interested in treatment options with which your doctor is unfamiliar.
  • You are considering a clinical trial or experimental treatment.
  • You are considering no treatment at all.
  • You are not responding well to your current treatment.
  • You have lost confidence in your medical care provider.
  • You are uncomfortable with the advice you have been given.
  • Your health plan requires a second opinion.

       Once your original diagnosis is confirmed by a second doctor who specializes in your illness, the likelihood that the diagnosis is accurate is much higher. If the diagnosis from a second doctor is different than the first, talk to your health insurance provider and primary doctor about getting about getting a third opinion. You may also feel that you want the opinion of an expert at treating your specific condition to ensure that you are well educated about your choices for treatment and care.

Forget about bedside manner or if the doctor is nice. Find a doctor with a lot of recent experience successfully treating your condition, and one who will communicate with you in a way that feels comfortable.

Talking with your doctor

If you don’t know how to talk to your primary doctor about getting second and third opinions, here are a few suggestions:

  1. “I’m sure you understand that this is a complicated and important issue for me, and I think I would like to talk to another physician about my diagnosis as well. Perhaps you have a recommendation?” This approach should help you maintain your relationship with your original doctor, and start the process for getting another opinion. If your doctor is not supportive, that is a warning sign telling you to get another opinion.
  2. “I am not sure what I need to do at this point, and I think I need another opinion.”

     It is possible that your doctor will refer you to a friend or colleague for a second opinion. In that case do the following:

  • Thank your doctor.
  • Ask why the doctor they are referring is a good choice.
  • Get the second doctor’s name and contact information.
  • Let your first doctor know that you are planning to speak with a few doctors, and that you would be happy to let him/her know the doctor you end up scheduling an appointment with.

Before your second opinion appointment

Usually it’s better to get a second opinion from a doctor with absolutely no relationship to your first doctor. Do not schedule an appointment with any doctor until you have taken the following steps:

  • Contact your insurance provider. Tell them about your diagnosis. Then find out what costs they will cover and what costs you will be responsible for.
  • Research your options for doctors who are in your network. You can get a list from your insurance provider.
  • Research each of the doctors on your list, and find out how long they have been in practice, whether they are Board Certified, if they have any marks against their license, or if they have any malpractice losses. In most cases, you can find that information from the professional association that covers the specialty for your condition, the State Medical Board in your state, or online doctor rating sites.
  • If you find things that concern you take that doctor off your list and add another.
  • Make a list of three doctors who are in your network, have a lot of experience treating your condition, and if possible are convenient to your home or place of work.
  • If you want to find subjective information about possible doctors for a second opinion, talk to other patients, connect to patient chat rooms, and ask your family, friends or colleagues if they know of anyone who had been diagnosed with similar type of medical problem as the one you are facing. Ask your contact if they would ask the person they know if they would recommend their doctor. You might also ask other healthcare workers who are not doctors, like nurses, for their opinions.

     Once you have found two or three experienced doctors that you like, make sure that they are in your insurance network. Assuming that they are in your network, call them and ask if they are accepting new patients. If they are, let them know your circumstances and ask if the doctor would have a few minutes time to talk to you about becoming a patient. If the doctor has the time schedule an appointment and prepare for the visit.   

     Some specialists will only schedule new patients if they are referrals from their colleagues. If this happens to you contact your first doctor’s office. Provide them with the contact information for your second doctor and ask them to make an appointment for you, or provide a referral. If they tell you it is not a doctor they usually deal with ask them to make the appointment anyway. If you choose a doctor for your second opinion who does not accept your insurance you may have to decide whether you can afford to pay for the appointment yourself, or whether you’ll need to identify another doctor who will work with your insurance.

Preparing for the second opinion appointment

Take the following steps to prepare for your visit to get a second opinion:

  • Contact your first doctor’s office and request that copies of your medical records be sent to both your second doctor, and to you.
  • After you have made arrangements to have your records sent to the second doctor, contact the second doctor’s office and find out what else the doctor might need in order to provide a second opinion. Examples would be your insurance information, your medical records from past doctors, and anything else. Make sure that your records are delivered, faxed, or emailed before your appointment. That gives your second opinion doctor a chance to review them before your appointment.
  • Prepare a list of questions to ask during your appointment. The questions in the list below should serve as a good starting point.

Suggested questions for a second opinion appointment:

  • Does the doctor have all of the information needed to make a diagnosis?
  • Is there any chance the medical problem could have a different diagnosis than was originally made?
  • Are there any alternative forms of treatment available?
  • What are the likely results if you wait to have any treatment?
  • What are the risks associated with the treatment(s)?
  • Are there any side effects or residual effects from each treatment option?
  • How is the treatment plan expected to improve your health or quality of life?
  • How long is the recovery period?
  • If the second opinion differs from the initial one, why? (It is important to understand the reasoning behind a medical opinion.)
  • Who can I call if I have any questions after reading your report, or considering your diagnosis?

     The second opinion appointment is likely to be a stressful time. Recognize it, and plan for it. Your second opinion doctor may begin by reviewing previous medical records, test results and doctors notes with you, and s/he will examine you at some point. Based on their review and exam, they may or may not recommend additional tests. If no additional tests are required you can expect your second doctor to give you an opinion and discuss your options with you. If the doctor recommends additional tests that you agree to have, you will likely have to make another appointment to get an opinion after they receive the results.

     This is also the time to ask the questions you prepared. It is not a bad idea to have a relative or friend come with you for support and to take notes. If that’s not possible you may want to bring a tape recorder to keep track of what the doctor says and recommends. Before leaving verify that the doctor will provide you and your current doctor with a written report and any test results, and that they will be available to you for follow up questions. 

Choosing your doctor and treatment

     Once you have a second opinion, compare it to the first opinion. If both of your doctors agree on your diagnosis and treatment recommendations you can proceed with a high level of confidence.  If your second doctor’s diagnosis agrees with your first doctor, but a different treatment plan is recommended, you need to ask your doctor(s) how long you have to decide on a treatment plan. Discuss both treatment plans with both doctors. Do some additional research on your own. Discuss both treatment options with your insurance provider. Consider a getting a third opinion specifically regarding your treatment options. Ask what would happen if you chose not to get treatment for a while.

     If the doctors disagree on the diagnosis consider getting a third opinion from another specialist. The third opinion will likely be similar to either your first or second doctor. That should help you decide about the best treatment option for you. If the doctor recommends a clinical trial as treatment or a device, ask whether he or she has a financial relationship with the company that sponsors the trial or makes the device.

Online Second Opinions

     When you get a second opinion, it is preferable to be seen by a doctor. That doctor will perform a physical examination and perhaps other tests. The doctor will also thoroughly review your medical records, ask you questions, and address your concerns. Do not rely on the Internet or a telephone conversation. Insurance may or may not pay for online consulting services. So, make sure you understand the costs up front.

Several leading U.S. healthcare providers offer online, virtual, or remote second opinions. At the time of publication of this article, the MyConsult online second opinion service by the Cleveland Clinic cost $565 for an online opinion. If a pathologist is needed the cost was $745. They have provided tens of thousands of second opinions. Contact them at (216) 444-3223. In case you were wondering, they agree with the original diagnosis about 75% of the time. That means the 25% of the cases they do not agree with the original diagnosis.

     Partners Healthcare is another source of second opinions from leading healthcare institutions. This is a collaborative effort of Massachusetts General Hospital, Brigham & Women’s Hospital, Harvard Medical School, and Dana-Farber, Partners Cancer Center. They can be contacted at (617) 724-9295.

     Johns Hopkins Medicine also offers remote second opinions for Dermatology, Gastroenterology and Hepatology, Neurology and Neurosurgery, Neuroradiology, Otolaryngology, Pathology, Surgery, and Urology. They can be contacted at 410-464-6555.

     Once you have a second opinion that confirms your diagnosis, or a third opinion if needed, you can confidently begin to learn about your options for treatment.

What Do Second Opinions Cost?

     Most medically necessary second opinions will be covered at least in part by insurance. If you are paying out-of-pocket, second opinions can cost $500 to $5,000 for complex cases. Also, beware that tests and lab work required for a second opinion may not be covered by your insurance provider if they were not included in your initial diagnosis. So, call your insurance company before you seek a second opinion to find out what expenses are covered, and what expenses are your responsibility.

     Medicare for example, covers 80% of the cost. If the second opinion does not agree with the first, Medicare will pay 80% of the cost of a third opinion. If you are in a HMO, your plan may require your primary care physician to approve your second opinion. If you are a Medicare recipient you can get more information about second opinions by calling 1-800-633-4227.

Tip: If your health plan does not specifically mention whether it covers second opinions you and your doctor may need to partner to advocate for coverage. Specially, if you want to see an expert who is not a part of your provider’s network.

     You should always let your doctor(s) know that you want a second opinion. You will need your records transferred to the new physician. You may also want the doctors to discuss your situation openly so you can learn where there is agreement and disagreement. Statistics show that one third of adults in the U.S. will not seek a second opinion, and that 10% of newly diagnosed patients do not understand their diagnosis. Getting ensures that you have all of the facts and are fully informed of your diagnosis, prognosis, and treatment options.

Patient Guidelines: Questions to Ask Your Doctor

Last Revision: 10/10/2022

medical-decisions-v2You can prepare for any doctor appointment by 1) writing down the questions you have for the doctor in advance, and 2) bringing pen and paper or a recorder to jot down/record  answers and take notes. if you bring a recorder let your doctor know that you are recording the conversation so you don’t forget anything. If the doctor objects, find a better doctor.

Here are questions you might want to ask:

  • What do think might be wrong with me? How do you know?
  • What are the common causes of this problem?
  • Can I self-treat this problem or condition?
  • Will I need any tests?
  • Which tests might I need?
  • What does each test involve?
  • How do I prepare for each test?
  • Will my insurance pay for the tests?
  • What are my treatment choices?
  • What are the benefits and risks of each treatment?
  • What are the side effects?
  • What are the likely outcomes of each treatment?
  • Which treatment is the most common for my condition?
  • What is the recovery like?
  • How will my life change with this diagnosis or treatment?
  • What is the likely outcome if I choose not to have any treatment?
  • What would be the “next steps” if treatment fails?
  • What kind of medication(s) must I take? For how long?
  • What does the drug do? Will there be any side effects?
  • What should I do if I have side effects?
  • Can I take a generic version of the drug?
  • Will the medicine interact with any I am already taking?
  • Should I avoid any kind of food or activity while taking this medicine?
  • Will I need to see a specialist?
  • Should I get a second opinion?
  • Do I need a follow-up visit?

Don’t hesitate to ask any other questions. You should also prepare questions for any hospital where you will be treated, as well as surgeons, specialists, other clinical healthcare providers, and insurance providers.

Patient Advocate Foundation

One of the very best resources of  free help and financial assistance in the U.S. Get help navigating your health insurance, accessing treatments, appealing insurance denials, and connecting to care through the Patient Advocate Foundation, or call 800-532-5274. Go to https://apatientsplace.com/help-guidance/ for hundreds of links to free help with your healthcare.

Patient Guideline: Finding the Right Doctor

By W. Kolber, MHA

The relationship that you have with your primary doctor is possibly the biggest factor in determining the quality of healthcare you get in the U.S. Without the “right” primary care doctor you are left without what may be your best advocate. You can find “Dr. Right” with effort, and it’s well worth it. Just, don’t expect it to be easy.  

The “right” doctor for you will;

  1. Listen to you.
  2. Treat you with respect.
  3. Communicate in a way that works for you.
  4. Help coordinate your healthcare needs and doctors.
  5. Be available when you need her/him.
  6. Be aware of what matters to you.
  7. Be in your health insurance network; if you are insured.

Remember, the “right” doctor for you may not be the right doctor for someone else. Finding the right doctor involves putting together information from many different sources.

Sources include;

  1. Your insurance provider.
  2. Your personal observations when you visit.
  3. Other doctors and health care professionals.
  4. Friends and family.
  5. The Internet.
  6. Other patients.

This article guides you through the process, helps you evaluate the information you get from others, and tells you the questions to ask. 

Step 1

The first decision you should make is who will be your primary care physician.

In an ideal situation this is the doctor who will help you make the right choices based on your medical situation and your preferences. If you are in an HMO, your primary physician will be required to manage your referrals to specialists. Even if you’re not in an HMO you will want your primary doctor to do the following;

  1. Know who you are.
  2. Know what you want.
  3. Coordinate your healthcare.
  4. Explain things you don’t understand.
  5. Connect you with other providers and services.
  6. Advise you about anything on your mind related to your health.
  7. Be accessible when you need help.

Now that you know what your doctor should do, consider the qualities you want. A few key qualities to consider include;

  • years of experience.
  • education background; including their residency.
  • male or female.
  • convenience of practice; location and hours.
  • after hours access to help.
  • communication methods; phone, email, text, etc.
  • designation as a medical home.

The “medical home” practice model is a team-based model. The doctors who follow the principles of the patient-centered medical home model take the lead for each patient’s medical team, while the team collectively takes responsibility for providing the patient’s health care needs. In 2007, several of the leading medical organizations, including the American Academy of Family Physicians, American Academy of Pediatrics, American College of Physicians, and American Osteopathic Association released the “Joint Principles of the Patient-Centered Medical Home.“

The principles are:

  • Each patient has an ongoing relationship with a personal doctor trained to be the primary contact. That doctor provides continuous and comprehensive care.
  • A personal doctor leads a team of individuals at the practice who collectively take responsibility for the ongoing care of each patient.
  • A personal doctor is responsible for providing all the patient’s health care needs, or taking responsibility for appropriately arranging care with other qualified professionals.
  • Care is coordinated and/or integrated across all providers including specialists, hospitals, home health agencies, nursing homes, etc.
  • Quality and safety are enhanced through care plans, evidence-based medicine, clinical decision-support tools, performance measurement, active participation of patients in decision-making, information technology, and quality improvement activities.
  • Patients have open access to care via email, flexible scheduling, convenient hours, telehealth, quick and effective communication, and other means.
  • Payments should reflect the value of the work that is done both inside and outside of the face-to-face visit.

Step 2

Identify three to five doctors in your insurance network that meet your criteria by using your health insurance Provider Directory. Find the type of doctor that meet your needs. The most common primary physicians are Family Practice, Internal Medicine, General Practice, and in some cases for women OB/GYN. If you don’t know how to access the Provider Directory call your health insurance customer service number.

Step 3

Review the qualifications of each physician. The medical credentials such as the medical school a doctor went too, and where they did their residency often indicate how well a doctor performed during their early training. A doctor’s credentials may also show you if a doctor has achieved a level of expertise and knowledge that the Medical Board that oversees their specialty feels qualifies that doctor for certification.    

Often these basic qualifications can be checked in your health insurance provider’s handbook or on their web site as a part of the listings for the doctors who are in their network. There are also many web sites that offer this information about doctors. Some of the leading websites for physician ratings and reviews can be found at www.aPatientsPlace,com. One of the best sources outside of your insurance provider is the professional medical association that licenses, certifies, and supports the doctor’s practice specialty. Another great source is the www.healthfinder.gov web site..

You can check if your doctor is Board Certified at the web site www.abms.org. There is no cost to register, and you can look up as many as five doctors each day. Board certification means that the doctor has completed an approved residency program and passed a detailed written exam in at least one of 24 specialty areas, such as family practice, internal medicine, or obstetrics and gynecology. Most doctors must renew their certification every five or ten years. Sometimes older doctors do not need to renew their certifications due to rules that cover experienced doctors. If the doctor is not board certified, find a different doctor.

Another simple way to find a doctor’s basic qualifications and a little about their practice at the same time, is to call their office and ask their staff.

If the doctor or their staff is hesitant to answer your questions, if their phones are not answered quickly, or you are put on hold for more than a few minutes, you should think about how you would feel if you were their patient and the same things were happening to you.

Tip: Start building a relationship with your doctor ASAP. Consider that a typical primary care physician may have 2,000 to 3,000 patients, and they may see as many as 30 patients on busy days. “

Step 4

Contact the practice by phone.

Here are some questions to ask the practice administrator or the receptionist during your initial phone call…

  • Is the doctor taking new patients?
  • Do you accept my insurance?
  • How long does it usually take to get an appointment?
  • How long does the doctor usually spend with each patient during an appointment?
  • Can I get a same day appointment in an emergency, or if I am in pain?
  • What are the office hours?

If the practice receptionist has the time, additional questions that you might ask include;

  • Who will see me when the doctor is not available if I have a problem, question, or concern?
  • Is the doctor part of a group practice? Where can I get more information about the other doctors?
  • Which hospitals does the doctor use?
  • What is your cancellation policy?
  • Is lab work done in the office, or at an off-site facility?
  • Do you help patients with their insurance claims?

Step 5

Check for Criminal Conduct. You can look this up on the web at www.fsmb.org. That site lists each individual state’s medical board site. There you can search under professional misconduct to see if your doctor has been listed. You might be surprised by what you find. You might also consider checking the federal government’s Open Payments database to see if their doctors receive payments from drug makers or medical device manufacturers. 

Step 6

Check the Doctor’s Reputation. There are several ways to check a doctor’s reputation. Remember though, that another patient’s experience, or a list of “top doctors” may not be based solely on facts. Information from patients, other health professionals, and subjective sources should be confirmed by at least two other sources if possible. Here are some ways to find more about your doctor’s reputation:

  • Ask the doctor’s current patients. When you are waiting to see the doctor, talk to a few other patients in the waiting room. Tell them that you are a new patient, and ask them what they like most and least about the doctor and practice.
  • You can also learn about a doctor’s reputation from other health care professionals.
  • If you prefer, you can look online at the growing number of web sites that publish information from patients and health care professionals about their experiences with specific doctors. The web site Yelp is one such example. A more complete list can be found at www.aPatientsPlace.com.
  • You can also search for “patient chat rooms” or “patient referrals” in your local area using your favorite Internet search engine. Sometimes, local magazines and web sites even publish lists of your area’s “best doctors.” Although, being listed as a top doctor in a publication or on a website does not necessarily mean that they are a good doctor.

The best doctor to work with will be open and honest about his or her limitations. A doctor’s attitude towards patients who would like a second opinion does not provide insight about the reputation of the doctor. It does show a lot about their comfort for recognizing that their patients are at the center of the health care system. Good doctors will welcome another opinion. If they are unwilling or resistant to refer their patients to other specialists this may be a sign of arrogance, or caring more about their ego than the well-being of the patient.

Some hospitals and health providers have phone or online doctor referral services. Usually you can find out if your hospital or health system has such a service simply by calling their main number or going to their web site.

Tip: Do not call 800 numbers at the local hospital as your only source during your search for a doctor. Many hospitals and health systems use these services to influence you to choose the doctors who drive the most revenue to the hospital, or to help a new practice add patients, or increase the use of a new treatment.

Step 7

Ask for Referrals. Since the early days of medicine, referrals have been one of the primary ways that people learned of doctors who might help them. Referrals from someone you trust gives you the advantage of learning from someone else’s experience. The most likely sources for referrals are health care professional, nurses, your family, a friend, a neighbor, or a co-worker. Consider though, that the experience of the person referring the doctor to you may not be similar to what you experience.

Tip: The fact that the person giving you a referral had a positive experience, or that they have been using the same doctor for  many years does not mean that they are getting good care, or that you will.

There are also web sites that are set up by other health care professionals to help people find doctors. Examples are http://www.FindADoc.com and SurgeonRatings.org. There are also social networking sites like Yelp that let users post and read comments about local doctors and practices. One of the challenges with online reviews is that you can’t always be certain that the reviews are authentic, or that they aren’t written by friends. Not to mention that patient reviews are often only written by people who either hate or love their doctors.

Step 8

Consider Ratings. Health insurance companies have been rating the performance of doctors for years, but consumers seem to prefer the opinion of their peers over a company that might have a financial interest in their ratings. Information and ratings from insurance providers and hospitals may also be influenced by the financial goals of the organization.  Some experts feel that ratings tend to influence patients to see the least expensive instead of the best doctors. However, if your insurance provider web site tells you how many procedures a doctor has done or other facts about the doctor that can be very helpful information.

Tip: Patient chat rooms and discussion groups can be an excellent source of referrals and information for everything from doctors to nursing homes to therapists. There are many patient chat rooms available at www.aPatientsPlace.com.

Step 9

Schedule an “Interview” Appointment. Meet and talk to every doctor, or at least their Practice Manager before trusting them with your treatment and/or care. Most practices have set aside a few time slots for new patients to come in and speak with the doctors. You might want to think through some of the following questions before scheduling an interview appointment.

  • Where is the practice located?
  • Will it be easy for you to get there?
  • Is it accessible by public transportation?
  • Is there ample parking?
  • Which hospital(s) does the doctor use?
  • Are you comfortable with the possibility of being treated at one of these institutions should the need arise?
  • Where are routine x-rays and laboratory studies performed? Can these be done in-office, or will you have to go to an outside laboratory?
  • How long must you wait for an appointment after you call? Can you be seen on the same day if you have an urgent need?
  • Is the office staff friendly and courteous?
  • If you call with a question about your care, does a doctor or nurse return your call promptly?
  • Who covers for the doctor when he/she is away?
  • Whom should you call if you have a problem after-hours?
  • If the doctor works in a group, are you comfortable with being seen by one of the practice partners?
  • Does the doctor frequently refer patients to other specialists, or does he/she prefer to manage the majority of your care?
  • Does the office process insurance claims, or must you pay up-front for services and file the claims yourself?
  • How long will you have to wait for an appointment? Look for practices that offer “open-access” scheduling, in which doctors typically leave part of each day’s schedule un-booked so they can offer some same-day appointments.
  • Do they keep paper or electronic medical records? Computer-based record-keeping is considered a major step toward improving the quality and efficiency of medical care. But not all doctors use electronic records.
  • Do they take questions by secure e-mail or text? E-mail “conversation” is great for problems or advice about a chronic disease, an appointment, test results, clarification of some item that came up during an office encounter, an overlooked question, a medication side effect, or any question requiring only a yes or no answer. And it’s a direct link to your doctor, without a telephone intermediary such as a nurse or assistant and can supplement your time with you.

During your initial appointment, you want to consider if the doctor …

  • Communicates openly and honestly.
  • Encourages you to ask questions.
  • Listens to your opinions and concerns.
  • Answers your questions.
  • Is not defensive.
  • Has experience treating your medical condition successfully.
  • Will spend the right amount of time with you.
  • Respects your preferences.
  • Explains things in way that you are comfortable with.

You should always work with a Board-Certified doctor. This means that they have completed residency training in a specific field following graduation from medical school, and they have passed a competency examination in that field.

Tips: 

  • Contact your insurance provider to discuss your options, and get an updated copy of your insurance plan benefits.
  • Check each doctor’s qualifications.
  • Make sure the doctor accepts your insurance. Why pay yourself if there is an excellent doctor in your insurance provider’s network?
  • Disregard advertisements.
  • When your doctor refers you to a specialist, always ask for two different recommendations.
  • Don’t wait in an office for more than an hour. Having to wait for hours may mean the doctor is under-staffed.
  • If you have no insurance or only have Medicaid, go to a clinic at a university medical center.

Here’s a link to additional information on working with doctors.

Is Doctors Lying to Patients Ever OK?

apatientsplace-logo-v3

We all know the healthcare system is difficult at best and more likely just broken. A recent Medscape poll of 286 physicians and 362 RNs and APRNs reported that at least some physicians felt it was OK to lie to patients about a medical error (17%), prognosis (14%), and to get treatment (24%).

There’s more information about lying to patients in this report from Medscape.

While it’s understandable that any clinician might lie if they felt they were helping a patient, doesn’t that reinforce a dangerous presumption that doctors know better than patients what’s in the patient’s interest?

Two questions that need to be asked in future polls are “how do patients feel about doctors and nurses lying to them,” and “how will we activate patients to contribute to their care teams if we don’t trust them with the truth?”

GETTING THE BEST CARE AFTER A SERIOUS DIAGNOSIS

LearnToLead
Last revision: 08/13/2022

Following the steps below increases the chances of achieving the best outcomes after a serious diagnosis. Each step is explained throughout the article. 

Do Not make the Journey Alone – Help and Support is Available for Free

While you need never walk the path to wellness alone, you must walk the path. If you choose not to accept responsibility for yourself, you will be at the mercy of a broken health care system.

The path to safe, quality, and affordable health care is likely to be paved with obstacles. You need to trust but verify everything, and consider your preferences above all.

Maybe, your doctor or insurance provider has already provided information in the form of a pamphlet, website, or video specific to your diagnosis. However, it’s likely to take a little time before you have processed your new diagnosis, and you are ready to make good decisions. There are a wide range of emotions that people might feel after getting a serious diagnosis. It’s important is that you realize that these feelings are natural.

You make better choices after your emotions settle down. It is not advisable to make any immediate decisions regarding your health unless your doctor tells you that you must act quickly.

If you must make a quick decision, try and get a second opinion beforehand. If your reactions to the news do not get better within a few weeks or if they get worse, ask your doctor about mental health counselors and support that is available.

Step 1 – Understand Your Emotions

Step 2 – Take Control

Step 3 – Schedule a Follow up Appointment

Step 4 – Find Support

Step 5 – Keep as Many Routines as Possible

Step 6 – Learn About Your Illness

Step 7 – Learn About Your Insurance

Step 8 – Prepare Questions for Your Doctor

Step 9 – Get Copies of Your Medical Records and Test Results

Step 10 – Consult an Experienced Specialist

Step 11. The Second Appointment

Step 12 – Confirm Your Diagnosis

Step 13 – Get a Second and Even a Third Opinion

Step 1. Understand Your Emotions.

It is common to feel shock, anger, frustration, worry, and other emotions after you are told you that you have a life-threatening or serious illness. It is even common for people of any age to experience short-term changes in their behavior after hearing such serious news. Usually, your emotions and any changes are temporary. They typically start returning normal within weeks in most cases, when there is support.

Start gaining control of your emotions as soon as you can by finding a few people who you trust to talk to. If there is no one in your life that you trust that much, consider finding comfort by seeking out and communicating with others who have experienced a similar diagnosis. Often, it is other patients who are able to fully understand what you’re going through. Sometimes the comfort of being anonymous also lets you express your feelings to others who you hardly know, because you have shared a common experience.

Support groups are also available in many online communities. A list of online patient communities is available at https://apatientsplace.wordpress.com.

Tip: Make every effort to visit and participate in a patient chat room, or online Q&A. Trust, but verify everything you learn in chat rooms with your physicians.

Tip: While great new solutions and technology for communicating effectively with your doctors and health team members are on the way, it’s the responsibility of each patient or caregiver to ensure that doctors and health providers have access to all appointment notes and clinically relevant information.

Step 2. Take Control.

Make no mistake, your choices about your health care and your life style are scientifically proven to affect how likely you are to minimize the effects of your illness, and your chances of achieving the best recovery possible.

Your choices may mean the difference between returning to health or not. You are not a victim. You are normal. Like everybody else. The majority of people in the world are going to be diagnosed with a major illness or disease during their life. When it’s your time, remember that there are a lot of others who have been in your shoes, and there are others currently walking a similar path in their lives.
You are not alone.

Why do some people seem to continue on with their lives and others seem to make their lives all about their illness? Why do some people recover and others not? Why do some people seem to resume active and productive lives and others not? Although the answers are not simple, we have learned that you can influence your outcomes through your actions.

Step 3. Schedule a Follow up Appointment

As soon as you can after your diagnosis, schedule a follow up appointment with your doctor or specialist. If you are going to see your specialist, let your primary physician know. During the follow up appointment you will want to discuss the diagnosis, ask questions, and learn your options.

Tip: When you call to schedule a follow up appointment, tell your doctor’s scheduling person that you would like a little extra time with the doctor to ensure that you understand your circumstances and choices.

While you are waiting for your second appointment do the following:
1. Take time to talk to friends, family, and other patients with your diagnosis about your feelings.
2. Learn the basics about your illness; (see step 6 below).
3. Contact your insurance provider to inform them of the diagnosis, ask if the expenses of a second opinion are covered, ask what expenses you will be expected to pay yourself, and request a case manager.
4. Prepare your list of questions for the doctor; see Step #9.

Step 4. Find Support

It’s very important that you find someone you trust to talk to about your feelings and choices. If you can find a few people, that’s even better. If you don’t have anyone in your life you trust to talk to seek out support groups online from the list below, from the local chapter of the professional organization for your illness, or from the list of patient communities at http://www.aPatientsPlace.com. Even if you don’t contact the people in these communities at first, read about what they are saying to each other.

Online Patient Communities

www.patientslikeme.com – It’s Free. Patients record data about themselves and share it in an open environment. Using tools from the site, patients can identify others with similar illnesses at similar stages. They can look to others to find what treatments work and which ones don’t.

www.MDJunction.com – Free, online patient communities with almost exclusively patient driven content.

www.acor.org – Association of Cancer Online Resources

www.dailystrength.org – Anonymous and free support groups for patients, organized by condition.

Tip: Trust, but confirm everything.

Step 5. Keep as Many Routines as Possible

A serious diagnosis can bring a great deal of uncertainty into your life. Possibly your family’s and close friends lives as well. The familiarity of continuing as many of your usual routines and activities with people that you know helps everyone including yourself feel more secure.

Step 6. Learn About Your Illness

You will maximize your time and your doctor’s if you educate yourself as best you can about your illness before you meet with your doctor and/or any specialists for follow up. You can’t count on your doctor or any other medical professional to know everything about your illness. According to Dr. Donald Lindberg, the Director of the National Library of Medicine, “if I read two new journal articles every night, at the end of a year I’d be 400 years behind.”

If you have Internet access at home, go to a reliable source of information. DO NOT DO A GOOGLE SEARCH, or use a general search engine. Reliable sources for starting your search are identified below. Do not expect to find everything about your illness by yourself. If you can learn about the nature of the illness and its usual treatment you will be well prepared to ask your doctor about the things that are on your mind, and to listen to the answers.

Start your search on a website from a credible organization that also reviews the quality of the websites and information it links too. Some of the very best are:

http://www.healthfinder.gov – Healthfinder® from the U.S. Department of Health and Human Services, offers health information that has been reviewed by professionals, as well as websites, professional medical groups, a medical dictionary, drug information, and much more.

http://www.nlm.nih.gov/medlineplus – MedlinePlus® is from the National Institutes of Health. You can search more than 800 health topics, prescription and over-the-counter drugs, news, professional directories, local resources, and a medical encyclopedia with images. Health information is available in dozens of languages.

Other trusted and highly visited health web sites are:

http://www.WebMD.com – WebMD is the most visited health portal, with more than 15 million visitors in most months.

http://www.MedicineNet.com – MedicineNet is owned and operated by WebMD. The site provides in-depth medical information for consumers produced by a network of more than 70 U.S. Board Certified Physicians.

If you want detailed information from the latest articles and medical research in medical journals, it is available online at the following sources:

http://www.ncbi.nlm.nih.gov – PubMed® is the National Library of Medicine’s database of references to more than 14 million articles published in 4,800 medical and scientific journals. Read the summaries (abstracts) first to determine if you should get a copy of or read the entire article. The article might be free, or it might require a fee charged by the publisher.

http://www.pubmedcentral.nih.gov – PubMed Central is the National Library of Medicine’s database of journal articles that are available free of charge to users.

An expanded list of health web sites is included in Addendum #10 of this Guide. Researching your illness through the resources listed above should provide you with a basic understanding of:

 The nature of your illness.
 How the illness normally affects people.
 The specialist(s) that typically treat the illness.
 What the standard treatments are.
 What the common prognosis (expected outcome) is.

As soon as you understand these basics about your illness you will be able to prepare questions for your follow up with your doctor or specialist, and you will be able to evaluate if the answers help you understand your choices.

Step 7. Learn About Your Insurance.

Tip: Call your insurance provider and get an updated, or the most recent copy of your insurance plan, or located on your provider’s website or member portal.

When you signed up for insurance, you agreed to abide by the rules of the plan. To avoid misunderstandings about your coverage you need to read the rules of your insurance plan, and contact your insurance company to discuss your situation before you go back to your doctor or a specialist. When you call your insurance company customer service phone number do the following:

 Get the name of the person you are speaking too.
 Make sure you have an up-to-date copy of your plan.
 Keep a record of the day and time you speak with the insurance company’s representative, and what they say.
 Explain your recent diagnosis.
 Ask about how to file a claim.
 Ask for a case manager to be assigned to your case so that you may speak with the same person all the time throughout the diagnosis, treatment, and care of your condition.
 Ask about what expenses will be covered under you personal plan, and what might not be covered.
 Ask what expenses you should expect to pay yourself. Don’t forget to ask if a second opinion, additional diagnostic testing, and all treatments will are covered under your personal policy.

For additional step-by-step instructions about how to work with your insurance providers go to Section 4 in this Guide; “Working with Your Insurance Provider…”

Step 8. Prepare Questions for Your Doctor.

Prepare your questions in advance, and plan to write down or record the answers to your questions so you don’t forget anything. If you don’t ask questions, you won’t have the information you will need to make good choices. If you don’t ask questions your doctor(s) may feel that they have answered all of your questions in a manner that you understand. They may also feel that you don’t want any more information.

The “Suggested Questions” below are a guideline to help you. Their answers should give you a better understanding of important pieces of the puzzle. You may have others of your own. The most important goal is to have all of the information you need to clearly consider what is in your best interest.

Suggested Questions and What You Should Learn from the Answers.

The categories covered are;
 Your illness or condition.
 The tests used to diagnose your illness or condition, traditional, new, and non-standard treatments for you illness or condition.
 Your insurance coverage and financial obligations.
 Recommended resources for additional information support.

Recommended Questions to Ask Primary Physician…

1. What is the technical name of my disease or illness? You should learn the technical name and the practical nature of your illness.

2. How does the disease or illness affect my body, and how should I expect this to change over time? You should learn what people experience in most cases, both in the near and long-term future.

3. What is my prognosis (outlook for the future) with and without treatment? You should learn what to expect in terms of your ability to function, your quality of life, your expected interactions health care providers, and what you could expect if you did not pursue any treatment at all.

4. Can you refer me to any specialists? You should learn if your doctor knows any specialists for your condition who he/she has worked with before.

5. What tests were used to diagnose my condition, and what did they show you? You should learn the technical name of the tests that your doctor used or plans to use to make a diagnosis, and what led him or her to believe you have the condition.

Will I need any additional tests? If yes;
a. What are the names of the tests?
b. What will each test show?
c. What are the risks of each test?
d. What should I expect on before, during, and after the tests?
e. Will I feel any pain?
f. Will I need to be medicated or sedated for each test?
g. Are there any alternatives to the test?
h. Are the tests routinely covered by my insurance?
i. How can I learn more about each test?

Based on the answers to the questions above, you should learn what test(s) you might need to take, the basic nature of each test, and what your doctor hopes to find out from each test.

6. What are the standard and new treatment options for my condition?
a. What are the pros and cons of each treatment option?
b. Which treatment do you recommend for me? Why?
c. Will my insurance cover the costs of the treatments?

Based on the answers to the questions above, you should learn your doctor’s perspective of how each treatment option will affect you, and how they will help treat your condition. Your primary care physician may not be able to answer these questions, and s/he may refer you to a specialist.

7. Are you aware of or do you recommend any alternative or complimentary treatments? You should learn if your doctor has any familiarity with alternative and complimentary medicine. Don’t expect much. However, if your doctor is comfortable discussing this with you, you may find some other treatment avenues to look into too.

8. How soon do I need to make a decision about treatment? You should learn how much time your doctor feels you have to consider your treatment alternatives. If your doctor wants you to immediately have a major surgical procedure or treatment that is invasive and/or irreversible, you must find out why, what will happen if you don’t have the procedure or treatment immediately, and how quickly you can get a second opinion from an experienced specialist?

9. Are there clinical trials that may be right for me? You should learn if your doctor is familiar with any clinical trials both locally and nationally that you would likely qualify for, and if he or she would recommend your participation.

10. Now that I have this diagnosis, what changes will I need to make in my daily life? You should learn if and how your illness will affect your activities and routines, any additional tests that may be needed, and how any treatments will impact your living situation, your quality of life, and your finances.

11. Do you know if insurance usually covers the treatment you are recommending? You should learn if the recommended treatment is usually covered by insurance.

12. Will you help me try to get my insurance to pay for whatever treatment I decide is right for me? You should learn if your doctor will help you to get coverage from your insurance company if you choose a new, experimental, or alternative treatment.

13. How can I get copies of my medical records? If you didn’t ask for copies when you first got to the office, you should learn what the office procedures are for getting copies of your records and test results.

Since, humans typically remember less than 10% of what they hear, you may want to consider what would be the most comfortable and effective way to ensure that you remember the answers you’re given. One option is simply to write the answers down on paper. If you feel you may be so busy writing that you are going to miss something, consider bringing a small cassette recorder with you. Just make sure you tell your doctor(s) what you’re doing so they are not surprised.

If those solutions don’t work for you, you might consider bringing somebody you trust. Whatever you do, make sure you that you are informed of and understand your options. This is a legal right. If you don’t keep asking more questions. Just be polite.

Step 9. Get Copies of Your Medical Records and Test Results.

It’s much easier to get copies of your medical records if you request them when you first visit your doctor’s office versus trying to get them after you have left. When you call your doctor’s office to schedule your appointment ask about their policies and costs for obtaining copies of your medical records and test results. Most practices will have you fill out a standard form when you get to the office for your scheduled appointment. If your appointment is not scheduled for a week or more, or you find out that your doctor’s office does not have a standard form, submit your written request for copies to your doctor as soon as you can. You should expect to be charged reasonable fees for the office’s time and the copies. If for any reason you can not afford to pay the fees discuss your situation with your doctor immediately. Most doctors will not allow you to take your records and copy them yourself.

Keep in mind that if you want true copies of any films i.e. X-rays, MRI, etc. this will cost more. Ask the office when you could reasonably expect the copies to be ready for pickup, and set a date to get them. On the date when your records will be ready take in a copy of your medical release, and a check for the full amount of the copies.

If you need to write a letter you need to specify:
 The medical providers name.
 The medical provider’s address.
 Your name.
 Your address.
 Your medical record or case number. You can get this from the office staff.
 Personal identification numbers; (i.e. Social security number & insurance ID#).
 The specific dates that you received service.

Be specific about what records you want. Do you want billing information included? Do you want the providers’ handwritten notes, their typed reports, or your test results? Under most circumstances, providers have 30 days to from the date they receive your written request to get you copies. Since you will want them quicker than that, be kind, considerate, and persistent with your doctor’s office staff.

Step 10. Consult an Experienced Specialist

When you are diagnosed or suspect that you may be diagnosed with any serious illness, injury, or condition. Just make sure that you speak with your health insurance provider so you understand what is covered by your policy, what financial obligations will be your responsibility, and what rules or processes that you need to follow to ensure the maximum financial coverage.

Step 11. The Second Appointment.

If by the end of this appointment you are not 100% comfortable with your doctor and the recommended course of action, get another opinion, or find a different doctor. If you haven’t already submitted your request for copies of your medical records you should do so when you arrive for your second appointment.

During this appointment you should expect your doctor to help you understand your diagnosis, discuss if more tests are recommended, begin discussing your treatment options, and answer your questions. You should also be able to decide if you feel your doctor will be your partner in fighting your illness or condition, or not. Make sure that by the time you leave this appointment you have a good understanding of your diagnosis and potential treatments. Ask for any instructions given to you to be written down. If you still have trouble understanding them, ask where you can go for more information.

When you leave your doctor after your second appointment you need to be prepared to investigate and ultimately make decisions about your doctors and treatments. Before you begin any treatment you should consider if you want another opinion; (this is discussed in the next step), whether the doctor(s) you have met with are the right ones for you to work with, and what treatments are right for you.

Step 12. Confirm Your Diagnosis.

The first diagnosis is not always the correct diagnosis. Remember that a diagnosis is what your doctor thinks is wrong. Although, doctors are well trained and often very experienced, there are more than 95,000 preventable deaths in the U.S. each year, and many misdiagnosed diseases.

The most common misdiagnosed diseases are breast cancer, melanoma, gynecological cancer, colorectal cancer, and hematological cancer. This ranking is based on the analysis of over 20 different malpractice studies, which analyzed a wide variety of issues ranging from the percentage of adverse outcomes occurring at particular setting to the number of suits citing a particular disease.

The point is that your first diagnosis is not always accurate. In order to confirm your diagnosis you should get copies of your medical records, and possibly a second opinion. If you get a second opinion that is different from the original diagnosis, you should call your insurance provider and request coverage for a third opinion from an expert in your illness or condition.

Step 13. Get a Second and Even a Third Opinion.

You should get a second opinion in all cases when you are diagnosed with a major illness or condition. This is important because you have to be confident that you know beyond a doubt what illness or condition you are dealing with, and what your options are if you are going to make the best treatment decisions. Many times your insurance provider will require a second opinion before approving payment for a costly treatment.

Since doctors are viewed by most people as trusting, caring and honest, it’s easy for any patient to feel like their doctor will be offended if they tell their doctor that would like the opinion of another doctor. Do not let this feeling prevent you from getting a second opinion. Doctors should be comfortable with their patients’ seeking the opinion of another doctor. In most cases, they should encourage it.

A second opinion is probably a good idea if you are;

 Diagnosed with a life-threatening illness or condition.
 Told you need a major surgery, or an invasive test.
 Do not have complete confidence in the original diagnosis.
 Feeling that you need to speak with an expert at treating your illness or condition.
 Unhappy that your regular doctor can’t diagnose your problem.
 Having trouble talking with your current doctor(s).
 Not seeing improvement in your medical condition.
 Told a second surgery is recommended.
 Having multiple medical problems

You may also feel that you want the opinion of an expert at treating your condition so you can be 100% confident that you understand all of your treatment options, and their likely impact on your life. Once your original diagnosis is confirmed by another doctor who specializes in your illness the likelihood that the diagnosis is accurate is much higher.

If possible, try to meet face-to-visit with the doctor providing the second opinion. There are great hospitals like the Mayo Clinic that will give you their expert opinion based on reviewing your tests and records, too. While this can be valuable, it is not the same as seeing the doctor in person. Make sure you write down all of your questions for the doctor providing the second opinion. You may also want to have someone you trust, maybe even your first doctor, review your questions. You will also need copies of your medical records sent to your second doctor.

If the diagnosis from the second doctor is different than the first, take the steps below to help you sort out what is going on.

Step 1. Tell your first doctor that you would like the name of a specialist so you can get another opinion. Any doctor worthy of the practice of medicine will be supportive. If your doctor is not supportive, that is a warning sign that means you most definitely need a second opinion.

Tip: Be careful that your doctor does not simply refer a friend or colleague.

You should not be looking for a doctor that your original doctor plays golf with. You are looking for an expert at treating your condition. Do not go to a doctor from the same practice unless you are 100% confident that the doctor you are being referred to is a bona-fide expert. Check with your health insurance provider to find out if they will pay for a second opinion. Find out what procedures you or your first doctor need to follow to ensure your provider pays for the second opinion.

Step 2. Ask to have your medical records sent from your initial doctor to your new doctor. Follow the steps provided earlier in this section to have those copies sent to your new doctor, and to get copies for your own records.

Step 3. Write down the questions you want answered, and make sure you get very specific answers.

One of the most important questions you need to ask is if your doctor has all of the information he or she needs to issue their second opinion. The questions you want to ask a doctor providing a second opinion are a little different than the questions you asked your first doctor. Use the list below as a guide:

What is the likelihood that my medical problem could have a different diagnosis than the one I was given?

What are the traditional and alternative forms of treatment for my condition?

Which treatments typically have the best results?

What are the likely outcomes if I wait, or if I don’t have the recommended treatment?

What are the risks associated with each of the possible treatment(s)?

Are there any side effects or residual effects from each treatment option?

How will each treatment improve my health, or the quality of my life?

How long is the recovery period?

If the second opinion differs from the initial one, you want to know why? It is important to understand the reasoning behind a medical opinion.

Step 4. Continue learning as much as you can about your illness or condition.

During your office visit you want to make sure you understand the second doctor’s opinion about your diagnosis, if additional tests might help to provide a clearer understanding of your condition, and your treatment options. If the doctor is not confident of your original diagnosis, you may want to consider a third opinion. Most important, make sure that you get a written copy of the second doctor’s findings, and that you know who to call if you have any questions after reviewing that report.

In today’s medical system, you can also get a remote second opinion from experts at leading medical institutions. Insurance often won’t pay for online second opinions, so make sure you understand the costs up front. Some of the providers include:

eCleveland Clinic’s, MyConsult service. You can find more information at http://www.my.clevelandclinic.org. This group is affiliated with the world renowned Cleveland Clinic. The group charges $565 for an online second opinion. If a pathologist is needed (with cancer, this is usually the case), there’s an additional charge of $180.

Econsults is a group affiliated with Massachusetts General Hospital. More information can be found about this group at http://www.econsults.partners.org. The consultation process is managed by Center for Connected Health and draws on the expertise of the physicians of all of the Partners hospitals including Brigham and Women’s Hospital, Massachusetts General Hospital, and Dana-Farber/Partners Cancer Care. At the time of researching this book, the basic cost was $495 for a specialist opinion. Radiology and Pathology reviews cost an additional $200 and $250 respectively.

As you take each step on your journey to well-being, remember that research shows that patients who are more involved in their health care tend to get better results and be more satisfied.