The linked documents in this post are examples of the health care forms and legal documents that are used to help people keep control of their health care choices. Since states have different laws please make sure to check with your State Health Department and/or an attorney familiar with the laws in your state to ensure you understand what is required in your state.
Living Will: Also known as an “advance directive,” a living will outlines the patient’s preferences for medical treatment in case they are unable to communicate their wishes. It often addresses end-of-life decisions, such as the use of life-sustaining treatments. You can find, download, and print free advance directive forms for your state. You may need to have your form witnessed or notarized, so be sure to read the directions closely. Here are some ways you might find free advance directive forms in your state in English and Spanish.
Medical Durable Power of Attorney (MDPA): This document designates a person (an “agent” or “proxy”) to make medical decisions on behalf of the patient if they become unable to make those decisions themselves. The agent’s authority is specified in the document by the patient. It may be as limited or broad as the patient prefers.
Advance Healthcare Directives: This document combines a living will and a healthcare power of attorney. It lets patients outline their medical preferences and designate a healthcare agent. So what happens if the agent who was appointed in the POA tries to go against the wishes of the principal written within the living will? Most states will proclaim that the preferences of the patient override the authority of the attorney-in-fact.
Do Not Resuscitate (DNR) Order: A DNR order instructs medical professionals not to perform cardiopulmonary resuscitation (CPR) in case of cardiac arrest. This decision is often made in consultation with the patient, their family, and their healthcare provider. A DNR must be obtained from and signed by a doctor – this is not a form you can download on the Internet and sign on your own. Because it is a doctor’s order, only a physician can revoke a DNR.
HIPAA Authorization: The Health Insurance Portability and Accountability Act (HIPAA) requires healthcare providers to protect the privacy of a patient’s medical information. A HIPAA authorization form allows the patient to grant specific individuals or entities access to their medical records and information.
Medical Release Form: Similar to a HIPAA authorization, a medical release form allows the patient to grant permission to healthcare providers to share their medical information with specific individuals or organizations, such as family members or other medical facilities.
Financial Power of Attorney:While not exclusive to healthcare, a financial power of attorney designates someone to manage the patient’s financial affairs if they become incapacitated. This can be relevant for handling medical bills and insurance claims.
Organ Donation Consent Form: Patients can express their intention to donate organs or tissues upon their death or when they are still alive by signing an organ donation consent form. This decision can be crucial for saving lives through organ transplantation.
Patient Registration Form: This form collects basic information about the patient, including contact details, personal information, medical history, insurance information, financial information, consent and authorization, emergency contacts, signatures and dates. It is typically filled out when a patient establishes care with a new healthcare provider. The specific content and format of patient registration forms varies by healthcare facility and may also be influenced by legal and regulatory requirements.
Release of Liability: In certain cases, patients might need to sign a release of liability form before participating in activities that carry inherent risks, such as clinical trials or experimental treatments.
Letter to Appeal a Denial of Coverage: Example of a letter that can be used to appeal a denial of health insurance coverage for a diagnostic test or a medical procedure.
Sources
NIH, National Institute on Aging, NIA
American Association of Retired People, AARP
American Academy of Family Physicians
Colorado Gerontological Society
The Center for Healthcare Rights
USA.Gov
U.S. Department of Health and Human Services, National Institutes of Health
So many times you hear a story about a family member or friend who is trying to arrange for the care, payment of services, or other needs for a loved one and the provider or business will not speak with them. This happens way more often than you might think, and it can happen fast.
Consider what could happen if your loved one, who currently lives an active life in their home, fell and required hospitalization, rehabilitation, and eventually long-term care. What if they become fragile, are heavily medicated, battling other illnesses, or they are on a downhill slide? How will you know that their preferences will be heard and acted on? Will they be at the mercy of a very broken, over-whelming and fragmented health care system, or will there be someone to step in and help make sure that their preferences are executed?
POA Is the CURE
A Power of Attorney (POA) is a legal document most commonly giving one person (the “agent”) power to act for another person (the “principal”) when the principal is not able to speak or make decisions for themselves. A POA that is not modified by the “principal” or overridden by a court lasts until the death of the principal. A POA can also be limited by the principal and grant the agent specific authority to execute a task like selling a car or property.
The agent is always expected to act in the principal’s best interest. Agents can have broad or limited legal authority to make decisions for and execute contracts for the principal about property, finances, medical care, and other issues. An agent cannot change the principal’s will, make decisions for the principal after death, or change the POA to another person or agent. Finally, although not common two or more people can have POA. The POA needs to be “Durable” to remain in effect after the principal becomes incapacitated or dies. If the POA does not specifically say it is durable the POA ends when the principal becomes incapacitated. It’s possible although not common to give two or more agents your POA.
Critical Tip: Third parties, especially banks and financial institutions, have frequently challenged the authority of an Agent using a POA. In these types of case the courts are used to order the third party to honor the POA.
OVERRIDING POA
When a POA is not acting in the principal’s interest, it may become necessary to override their authority. This is done by filing a petition in court challenging the agent. If the court finds the agent is not acting in the principal’s best interest, it can revoke the POA and appoint a Guardian.
Elder Law attorneys are very helpful when trying to understand how to execute and use a POA based on your circumstances. They often provide an initial consultation for no charge. Although free POA forms are available online there are many issues to consider. We recommend using a qualified, local attorney 100% of the time. The National Academy of Elder Law Attorneys will help you find the right attorney. Spare yourself and your family the pain and anguish of trying to help a loved one when they need it most. Learn about POA and DPOA. Find a local attorney to help you execute the right tool for your needs. This will help you keep control of your loved-one’s safety, care, and quality of life, and support your own well-being as well.
The Nov. 23 issue of Annals of Internal Medicine published an observational study that concluded that hyperglycemia (blood sugar level) independently predicted progression from noncritical to critical condition and death, regardless of prior Diabetes history, among more than 11,000 patients with confirmed COVID-19, from 109 hospitals in Spain. This study informs how people admitted to a hospital even with mild hyperglycemia should be treated. Since it examines outcome by admission blood sugar level it eliminates the effect of any inpatient treatment.
If you’ve just been told that you have a serious illness or life-threatening condition you do not need to take the journey back to health alone. In fact, this will happen to most people if they live long enough, and it happens millions of times in America every week.
Use the following steps to insure the highest quality care and best outcomes for yourself…, or click the Step-by-Step Patient Guidelines for more information;
1- Understand and balance your emotions.
2- Take control.
3- Learn about your condition.
4- Learn about your health insurance.
5- Schedule and prepare for follow up appointment.
6- Find Support.
7- Ask questions of your doctor, specialists, other patients, and your insurance company.
8- Confirm your diagnosis.
9- Keep as many routines as possible.
10- Get and file copies of all your medical records; including doctor’s notes.
11. Consult an experienced specialist.
12. Schedule a second follow-up with your primary care to discuss treatment and care options.
If you would like to get regular updates on COVID-19 from the CDC click here, and complete the form in the left column in the middle of the page.
If you would like to learn about the Clinical Management and Treatment click here.
The Interim Guidance for Healthcare Facilities from the CDC to prepare for community transmission can be found by clicking here. Senior housing communities would be well advised to follow these Guidelines as well.
The following symptoms often appear 2 – 14 days after exposure to Coronavirus (COVID-19); fever, cough, shortness of breath.
To get tested call your doctor. At this point, due to the shortness of tests, most states still require a doctor’s order to get tested.
Steps for Prevention
Stay home except for medical care, and avoid public areas and transportation.
As much as possible, separate yourself from other people and animals in your home. If you have contact with others or pets in your home wash your hands before and after contact and wear a face mask if possible.
Click here for additional information on preventing the spread of Coronavirus Disease in Homes and Residential Communities.
If you would like to learn how Coronavirus spreads click here.
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;
Listen to you.
Treat you with respect.
Communicate in a way that works for you.
Help coordinate your healthcare needs and doctors.
Be available when you need her/him.
Be aware of what matters to you.
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;
Your insurance provider.
Your personal observations when you visit.
Other doctors and health care professionals.
Friends and family.
The Internet.
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;
Know who you are.
Know what you want.
Coordinate your healthcare.
Explain things you don’t understand.
Connect you with other providers and services.
Advise you about anything on your mind related to your health.
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;
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.
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 GOOGLESEARCH, 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.
