You just got the news from your doctor that you’re sick, and it’s a life threatening or chronic illness. As soon as you balance your emotions, you will 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.
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
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. Those emotions include anger, helplessness, depression, confusion, and fear to name a few. It’s important is that you realize that these feelings are natural.
Grief can be a major factor for anyone after being diagnosed with a serious or life-threatening illness. 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.
The Swiss-American psychologist Elisabeth Kubler-Ross developed a model known as the Five Stages of Grief. They are;
1. Denial: “This can’t be happening.”
2. Anger: “Why me? This is not fair!”
3. Bargaining: “Please let me live until my children are grown.”
4. Depression: “Why bother with anything – I’m going to die anyway.”
5. Acceptance: “It’s going to be alright.”
The process is not always linear. You may not experience each stage in the manner outlined by Kubler-Ross. What matters are the steps that 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 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.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 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.