The Early Steps
You just got the news from your doctor that you’re sick, and it’s a life-threatening or chronic illness. What now?
As soon as you balance your emotions, you’ll have to make important decisions about your diagnosis, doctors, treatment, care, and finances. During the next few days, weeks, and months, you must learn enough about your choices to make informed decisions. It’s your right and responsibility if you want safe, quality health care.
While you need never walk the path to wellness alone, you must walk it. If you choose not to work with your health care team and 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 paved with obstacles that you need to get around, over, and through. Trust in your health care providers, verify everything, and consider your preferences above all.
Maybe, your doctor or insurance provider has already provided you 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 process your new diagnosis and are ready to make good decisions. There are a wide range of emotions that people might feel after getting a serious diagnosis. Those emotions include anger, helplessness, depression, confusion, and fear to name a few.
It’s important that you realize that these feelings are natural. Grief can also be a major factor for anyone after being diagnosed with a serious or life-threatening illness.
The Swiss American psychologist Elisabeth Kubler-Ross developed a model known as the Five Stages of Grief. They are:
- Denial: “This can’t be happening.”
- Anger: “Why me? This is not fair!”
- Bargaining: “Please let me live until my children are grown.”
- Depression: “Why bother with anything—I’m going to die anyway.”
- Acceptance: “It’s going to be alright.”[1]
Grieving is not necessarily a linear process, and you may not experience each stage in the manner outlined by Kubler-Ross. What matters is that there are steps you can take to control your feelings, balance yourself, and self-advocate for the safest and best health care possible.
Step 1. Understand Your Emotions
It is common to feel shock, anger, frustration, worry, and other emotions when you are told you that you have a life-threatening or serious illness. It’s even common to experience short-term changes in your behavior after hearing such serious news. Usually, your emotions and any behavioral changes are temporary. They typically start returning to normal within weeks when you have support.
You can help yourself balance your emotions as soon as possible by finding someone you trust to talk to. If there is no one in your life who you trust that much, consider seeking out and communicating with others who have experienced a similar diagnosis. Often, other patients 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 included later in this section, in Section 10 of this Guide, and online at www.aPatientsPlace.com.
Tip: Make every effort to visit and participate in a patient chat room or online Q&A.
Tip: Trust, but verify everything you learn in chat rooms with your physicians.
Tip: While great new physician-patient communication solutions are on the way, it’s the responsibility of each patient or their caregiver to ensure that doctors and health providers have access to all past appointment notes and other clinically relevant information.
You’ll make better choices after your emotions settle down. It is not advisable to make any immediate decisions regarding your health after a serious diagnosis unless your doctor tells you that you must act quickly. If you must make a quick decision, try to 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 2. Take Control
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 quickly 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.
Make no mistake, your choices about your health care and your lifestyle are scientifically proven to affect how likely you are to minimize the effects of your illness and maximize 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 happens to you, remember that there are a lot of people who have been in your shoes and others who are currently walking a similar path in their lives. You are not alone.
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 a 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 after your diagnosis, 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 follow-up appointment, do the following:
- Take time to talk to friends, family, and other patients about your feelings.
- Learn the basics about your illness; see Step 6 below.
- 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.
- Prepare your list of questions for the doctor; see Step 9 below.
Step 4. Find Support
As mentioned earlier, 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 whom you trust enough to discuss intimate issues, you can seek support online from the patient groups listed below, from the local chapter of the professional organization for your illness, or from the list of patient communities at www.aPatientsPlace.com. Even if you don’t contact the people in these communities right away, sign on and read what they are saying to one another.
Online Patient Communities
Click on the “Connect to Other Patients” icon near the top of the home page to go to a large index of patient-to-patient chat rooms.
This site allows patients to record data about themselves and share it in an open environment. Patients can identify others with similar illnesses at similar stages. They can also share their experiences with treatments and medications.
This site offers patient communities with almost exclusively patient-driven content.
The Association of Cancer Online Resources has over 140 communities to share information and support.
This site has support groups in a multitude of categories; it is not exclusively for illnesses.
Step 5. Keep as Many of Your Daily Routines as Possible
A serious diagnosis can bring a great deal of uncertainty into your life, and possibly into the lives of your family and close friends as well. The familiarity of continuing as many of your usual routines and activities as possible 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 about your illness before you have a follow-up appointment.
Tip: You shouldn’t expect your doctor or any other medical professional to know everything about your illness. According to Dr. Donald Lindberg, the former 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.”[2]
If you have Internet access at home, go to a reliable source of information. Reliable sources for starting your search are listed 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 trustworthy website from an organization that also reviews the quality of the websites and information it links to. Some of the very best are:
Healthfinder, from the U.S. Department of Health and Human Services, offers health information that has been reviewed by professionals, as well as websites, 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 reliable health websites are:
WebMD is a reliable health portal.
MedicineNet is owned and operated by WebMD. The site provides in-depth medical information 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, visit these websites:
https://www.ncbi.nlm.nih.gov/pubmed/ 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.
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 websites is included in Addendum 4 of this Guide and online at www.aPatientsPlace.com.
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) who 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 doctor, and you will also be able to evaluate whether the answers help you understand your choices.
Step 7. Learn about Your Insurance
Tip: Call your insurance provider and get a copy of your insurance plan.
When you purchased health insurance or applied for public aide, you agreed to abide by the rules of the plan or program. To avoid misunderstandings about your coverage, you need to do the following:
- Read your insurance plan or program guidelines.
- Contact your insurance company or program manager and discuss your situation with a service representative before you go back to your doctor or a specialist.
When you call an insurance or program customer service phone number, do the following:
- Get the name of the person you are speaking to.
- Make sure you have an up-to-date copy of your plan or program guidelines.
- Keep a record of the day and time you speak with the representatives and what was said.
- Explain your recent diagnosis.
- Ask 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.
Tip: If the person who you are speaking with refuses to give you the name of a case manager, ask to speak with a manager.
- Ask what expenses will be covered under your 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 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 for Your Follow-up Appointment
If you don’t ask questions, you won’t have the information you need to make good choices, and your doctor may feel that she or he has answered all your questions in a manner that you understand. Your doctor may also feel that you don’t want any more information.
Tip: Prepare your questions in advance, and plan to write down or record the answers so you don’t forget anything.
The suggested questions below are a guideline to help you. You may have others of your own. The answers should give you a better understanding of your situation and choices. The most important goal is to have all of the information you need to consider clearly what is in your best interest.
Suggested questions for primary care doctors and specialists should cover the following areas:
- Your illness or condition.
- The tests used to diagnose your illness or condition, and traditional, new, and nonstandard treatments for your illness or condition.
- Your insurance coverage and financial obligations.
- Recommended resources for additional information support.
Questions to Ask a Primary Care Physician
- 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, get copies of the results, and find out what led the doctor to his or her diagnosis.
- What is the technical name of my disease or illness?
You should learn the technical name and the practical nature of your illness.
- 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.
- 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, quality of life, and expected interactions with health care providers during your treatment, and what you could expect if you did not pursue any treatment at all.
- Can you refer me to any specialists?
You should learn if your doctor knows any specialists for your condition, specifically someone the doctor has worked with before.
Questions to Ask a Specialist
- Will I need any additional tests? If the answer is no, move on to the next questions. If the answer is yes, ask these follow-up questions:
- What are the names of the tests?
- What will each test show?
- What are the risks of each test?
- What should I expect on before, during, and after the tests?
- Will I feel any pain?
- Will I need to be medicated or sedated for each test?
- Are there any alternatives to the tests?
- Are the tests routinely covered by my insurance?
- How can I learn more about each test?
Based on the answers to the questions above, you should learn what additional test(s) you might need to take, the basic nature of each test, what the specialist hopes to find out from each test, and the specialist’s perspective of how each treatment option will affect you.
Other questions that you might ask include:
- What are the standard and new treatment options for my condition?
- What are the pros and cons of each treatment option?
- Which treatment do you recommend for me? Why?
- Will my insurance cover the costs of the treatments?
- Are you aware of or do you recommend any alternative or complimentary treatments?
You should learn if the specialist has any familiarity with alternative and complimentary medicine. If the specialist is comfortable discussing this with you, you may find other treatment options to look into.
- How soon do I need to make a decision about treatment?
You should learn how much time the specialist feels you have to consider your treatment alternatives. If he or she 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 another specialist?
- Are there clinical trials that may be right for me?
You should learn if the specialist is familiar with any clinical trials, both locally and nationally, that you would qualify for, and if he or she would recommend your participation.
- 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.
- Do you know if insurance usually covers the treatment you are recommending?
You should learn if the recommended treatment is usually covered by insurance.
- Will you help me try to get my insurance to pay for whatever treatment and rehabilitation I decide is right for me?
You should learn if the specialist will help you obtain coverage from your insurance company if you choose a new, experimental, or alternative treatment.
- How can I get copies of my medical records?
You should learn the procedures are for getting copies of your records and test results.
Since most people 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 a piece of paper. If you feel you may be so busy writing that you are going to miss something, consider bringing a small cassette recorder or another person with you. Just make sure you tell your doctor(s) what you’re doing beforehand so they are not surprised.
Whatever you do, make sure you that you are informed of and understand your options. This is your legal right and obligation. If you are unclear about anything, make sure that you have a way to follow up until you are clear about your choices.
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 or treatment facility versus trying to get them after you have left. When you call to schedule your appointment, ask about the policies and costs for obtaining copies of your medical records and test results. Most providers will have you fill out a standard form when you get to their 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’t 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 copies of any imaging tests, such as x-rays or MRIs, it may 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 that your records are ready, bring with you to the doctor’s office a copy of your medical release and a check for the full amount of the copies.
If you need to write a letter requesting your records, you can use the sample letter in Addendum 1 of this Guide as a draft. At the beginning of your request letter you will need to specify:
- The medical provider’s name
- The medical provider’s address
- Your name
- Your address
- Your medical record or case number (you can get this from the office staff).
- Social Security number and insurance ID number).
- The specific dates that you received service.
Be specific about what records you want. Do you want billing information included? Do you want the provider’s handwritten notes or typed reports, or your test results? Under most circumstances, providers have 30 days from the date they receive your written request to get you copies. Since you will often 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 a serious illness, injury, or condition, one of the most important things that you should do is to consult a board certified specialist with experience treating your condition. Just make sure to speak with your health insurance provider first so you understand what is covered by your policy, what financial obligations you will have, and what rules or processes that you need to follow to ensure maximum financial coverage.
Tip: Once your original diagnosis is confirmed by a second specialist, the likelihood that the diagnosis is accurate is much higher.
Step 11. The Second Follow-up Appointment
During the follow-up appointment, you should expect your doctor to help you understand your diagnosis, discuss whether more tests are recommended, discus your treatment options, answer your questions, and develop a treatment plan that you agree with. You should also be able to decide if you feel your doctor will be a good partner in fighting your illness or condition.
Make sure that by the time you leave, you have a good understanding of your diagnosis and potential treatment options. 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 the doctor, you need to be prepared to investigate and ultimately make decisions about your doctor and treatment. Before you begin any treatment you should consider whether you want another opinion (this is discussed in the next step), whether the doctor you have met with is the right one for you to work with, and what treatment is 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 millions of misdiagnosed patients and tens of thousands of preventable deaths in the United States each year.[3]
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 in order to make good 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 patients to feel that their doctor will be offended if they tell him or her that they 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.
- Not completely confident in the original diagnosis.
- Feeling that you need to speak with a doctor who is an expert at treating your illness or condition.
- Unhappy that your regular doctor can’t diagnose your problem.
- Having trouble talking with your current doctors.
- Not seeing improvement in your medical condition.
- Told a second surgery is recommended.
- Having multiple medical problems.
If possible, try to meet face-to-face with the doctor providing the second opinion. There are great hospitals such as 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 the second doctor.
If a diagnosis from a second specialist is different than the diagnosis from the first specialist, take the steps below to help you sort out what is going on.
Step 1. Find a Specialist
Tell your primary care first doctor that you would like the name of another specialist so you can get a third opinion, to clarify the differences in the initial diagnosis and second opinion. Any doctor worthy of the practice of medicine will be supportive. If your doctor is not supportive, that is a warning sign that you most definitely need a third opinion.
Tip: Be careful that your doctor does not simply refer a friend or colleague. You want your doctor to recommend someone who is an expert at treating your condition, not just someone your doctor has a personal friendship with.
You should not look for a specialist that your primary care doctor plays golf with. If you need to find an expert on your own, go to Section 6 in this Guide titled “Finding the Right Doctors and Health Providers” and follow the instructions.
Do not go to another doctor from the same practice as the initial doctor for a second opinion 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 t you have coverage for a second or third opinion. Find out what procedures you or your first doctor need to follow to ensure that your provider pays for the second and third opinion.
Step 2: Handle Your Medical Records
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 be sure to get copies for your own records.
Step 3 Get Your Questions Together
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 whether your doctor has all of the information he or she needs to issue a second opinion. The questions you want to ask the doctor providing the second opinion are different than the questions you asked your first doctor. Use the list of questions 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 treatment typically has 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 possible treatment?
- 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, or if the second doctor is not confident with your original diagnosis, you will want to know why. It’s important to understand the reasoning behind a medical opinion. You should leave that appointment knowing if additional tests might help to provide a clearer understanding of your condition, and your treatment options. This information will be critical should you seek 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.
Step 4. Learn as Much as You Can about Your illness or Condition
Review sections 6, 10, 11, and 12 in this Guide for step-by-step instructions on how to research your condition, learn about treatment options, find qualified doctors and hospitals, access clinical trials, connect with patient groups, and find local resources and support.
Remote Second Opinions
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:
MyConsult Online Medical Second Opinion (https://my.clevelandclinic.org/online-services/myconsult). This group is affiliated with the world-renowned Cleveland Clinic. At the time of writing this Guide, the group charged $565 for an online second opinion. If a pathologist was needed (with cancer this is usually the case), there was an additional charge of $180.
Partners Online Second Opinion (https://econsults.partners.org). This group is affiliated with Partners HealthCare, a Harvard Medical School––affiliated health care delivery system. The group draws on the collective expertise of the physicians at all of the Partners’ hospitals, which include Brigham and Women’s Hospital, Massachusetts General Hospital, and Dana-Farber/Partners Cancer Care. At the time of writing this Guide the basic cost for a specialist’s opinion was $495. If needed, radiology and pathology reviews were 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.
[1] Kubler-Ross, E. (1969). On Death and Dying. New York: Macmillan.
[2] DeBronhart, D. (2015). NLM director Donald Lindberg is retiring. Speak up: What’s next for the library. E-Patient Dave blog. Retrieved from http://e-patients.net/archives/2015/02/nlm-director-donald-lindberg-is-retiring-speak-up-whats-next-for-the-library.html.
[3] Firger, J. (2014). 12 million Americans misdiagnosed each year. CBS News. Accessible at http://www.cbsnews.com/news/12-million-americans-misdiagnosed-each-year-study-says.
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