You Are Your Best Advocate
As a patient in the U.S. health care system you will face many obstacles to getting safe, quality, and affordable health care. To overcome them, you must advocate for yourself and lead your health care team. You’ll get a big assist from many primary and specialty care practices transitioning into medical homes and providing patient-centered care.
You are the core of your health. You make the most of the choices that impact your health. You certainly feel or suspect that something may be wrong long before anyone else. You decide when and how to engage with the health care system.
The crucial steps when advocating for yourself are:
- Ask questions when you’re not sure.
- Get your questions answered in a way that you understand
- Make sure that your preferences are known by your health care providers and caregivers.
The four reasons you must advocate for yourself, and lead your health care teams are:
- You’ll improve the safety, quality, and affordability of your health care by taking responsibility for and control of your health care choices. Frankly, that should be more than enough reason to communicate and work with your doctors and other health care team members.
- There is no guaranteed that anyone else will advocate for you, especially when things get difficult. Your primary care physician (PCP) might try. However, it is a rare exception when a PCP or his or her staff has time to advocate for their patients for anything but the most basic issues and finances. Even if your PCP is fantastic about helping you understand your choices and advocating on your behalf, no one knows your body, health, and preferences better than you.
- Every health care professional or provider you interact with, including your doctor(s), has other interests to consider. Doctors serve many patients, their staff, their investors, the needs of their practice, and sometimes their own self-interests. Hospital case managers, discharge planners, and service representatives at your health insurance company, Medicare, and Medicaid can help you with your policy, coverage, care coordination, and choices. However, they, too, have other professional and financial interests that are not necessarily aligned with your interests.
- Advocating for yourself empowers you. Positive emotions like empowerment are good for our physical and emotional well-being, including helping to speed recovery time. Advocating for yourself also helps to lower the risk of medical mistakes, and it often reduces the cost of health care.
Tip: Decisions about your benefits are all too often influenced by your health insurers’ ability to control costs or make money.
Even if you’re fortunate enough to have family members or loved ones to make sure that your interests are heard and protected, there are limits to how much they can help. It’s critical for you to remain engaged and involved, guiding and communicating with your health care teams and providers.
Everyone can advocate for themselves. You just need to know how.
Tip: Seniors and people with language barriers tend to be the most passive in the doctor-patient relationship. If you are an older patient or have challenges understanding English, consider having another person go with you to appointments.
Advocating for Yourself Can Be Tough
Speaking up for yourself can be difficult and even scary at times. It is especially difficult when you are just starting to advocate for yourself and you are speaking with doctors and other health professionals who have a lot of education and experience.
You can make it easier to have those conversations by following these six steps:
Step 1: Listen to and Understand Your Own Body
You don’t need to worry that the doctor will know more than you. Nobody knows you better than you. See Section 3 in this Guide for more information.
Step 2: Get Copies of Your Past Records
Take the time to understand your medical records. If you’re not 100% certain what things mean, contact the treating physician’s office and ask for an explanation. Sharing this information is another good way to begin a dialogue with your doctor.
Step 3: Learn as Much as Possible about Your Family’s Health History
Telling your doctor about your family history will help him or her understand any potential genetic issues.
Step 4: Learn Everything Possible about Your Condition and Your Insurance Coverage
Learning about your condition and insurance coverage will make you a much better advocate for yourself. There is much more information in this Guide about researching your condition or illness and learning about your health insurance.
Step 5: Consider Your Needs and Preferences
Your needs and preferences include learning what your rights are and where you can get assistance, support, and trustworthy information. There is more information later in the Guide.
Tip: An ideal patient-doctor relationship optimizes the medical expertise of the doctor with the situational knowledge and preferences of the patient.
Step 6: Your Goals in Self-Advocating
Your goals in self-advocating are to fully understand your circumstances and choices, and to make your voice and preferences heard. It does not matter whether you are speaking or using sign language or assistive technology. Effective communication is not angry or demanding. It is respectful and understanding, even though the answers at times may be frustrating.
Tip: You are the person with the most at stake. So you need to have control over what happens to the best of your ability.
You Are the Boss of You
You have the right to respectful and considerate treatment from all doctors and health care providers. Expect and demand nothing less. You choose your doctor(s). You can and should replace them if needed. You can refuse any test or treatment without giving an explanation. Unless you are on Medicaid, Medicare, or public assistance, you also choose your insurance.
Speaking Up at a Hospital or a Nursing Home
If you have a concern while you’re in the hospital, you should immediately tell someone who is directly involved with your care.
Tip: If you are not 100% sure why you are being given a drug or you are told that a test has been scheduled, ask for more information before agreeing to move forward. Your first option should be your doctor, then a nurse, then a floor or unit manager.
Providers need your help in resolving problems quickly before they become bigger problems. When you tell someone about your concerns, also tell them what you want and what you expect them to do about it.
Tip: If you do not receive a timely response, consider contacting the hospital customer service, patient advocacy, or patient safety/quality department
Prepare for Your Hospital Stay
The world-renowned Johns Hopkins Medicine (JHM) suggests that you prepare a kit with important medical information before you go into any hospital or treatment facility. Your kit should include your medical information, including medications and dosages, any allergies, names and contact information of your physicians, your insurance company, and a designated person to speak for you if you are unable to speak for yourself.
JHM also suggests that you:
- Bring someone to help or advocate for you.
- Always asks question, especially regarding medications, tests, procedures, and doctors that are scheduled to see you.
- Start and keep moving as quickly as possible, consistent with your doctor’s instructions.
- Help prevent infections by asking anyone who visits to wash their hands or use hand sanitizer.
- Discuss your discharge and care coordination plans when you are getting ready for release from the hospital or facility.
Tip: A copy of your discharge summary should be given to you and your primary care physician when you are discharged. If it’s not, make sure you get a copy soon after you are discharged.
Consumer Reports has published an excellent hospital survival guide to help you get the highest quality care while you are in a treatment facility. Their guide includes checklists to remind you what to do starting with “before you are admitted,” continuing through to “when you check in,” “during your stay,” and “when you leave.” The guide can be found online at http://www.consumerreports.org/cro/2012/10/your-hospital-survival-guide/index.htm.
Your Advocacy Skills
Once you start paying attention to your body and you understand that you can control your health care choices and finances, you can start working on the critical skills you’ll need to advocate for yourself.
The “must-have” skills are quite simple. They start with asking questions and telling people what you need. Other skills that are very helpful include:
Skill 1: Understanding Your Health Insurance
Many people don’t understand the basics of their health insurance. You can take the following steps to fix this;
- Write down your questions regarding your insurance.
- Call your insurance customer service.
- Request a copy of your policy.
- Explain your circumstances.
- Ask as many questions as needed until you understand your benefits, coverage, and expected costs.
Before you hang up with your health insurance customer service representative, ask who you can call if you have more questions and how familiar that person will be with your circumstances.
If you don’t have health insurance, or you use Medicaid, Medicare, or public assistance, contact your state health department for details about your coverage, or use www.benefitscheckup.org to find free programs and services in your area that can help you get the information you need.
Skill 2: Researching and Gathering Information
A key component of self-advocacy and good decision making is learning as much as possible about your illness and circumstances. Your doctors, other patients, Internet health portals, professional medical associations, your health insurance provider, and other health professionals are all valid sources of information. Consult Sections 3 and 10 in this Guide for step-by-step instructions on learning about your condition.
Tip: No single health care professional has all the answers for you
Skill 3: Communication
The people involved with your health care must understand your needs, concerns, and questions if they are going to help you. The most important steps in communicating effectively are to ask questions, listen carefully to the responses, and make sure that you express your needs until you can confirm that you have been heard.
Skill 4: Problem Solving
There are many decisions that you may need to make throughout your diagnosis, treatment, and recovery. Examples include whether to get a second opinion, have a specific test or treatment, find a new doctor, choose a hospital, participate in a clinical trial, and much more.
Skill 5: Negotiating
At numerous times, you may find yourself having to persuade others to get what you want. It may be as simple as leaving the hospital a day early, or more complicated like obtaining a different prescription or negotiating a discount for services. When you find yourself having to argue for what you want, your negotiating skills may be put to the test.
Skill 6: Preparation
Another self-advocacy skill that is not often mentioned is preparation. When you are prepared, you save everyone time, and you can contribute more to your health care teams. To prepare, do your research, keep records, think about your preferences, suggest solutions, keep an open mind, and work in partnership with others to solve problems. Remember, you are not alone.
Tip: A great way to learn what to expect is to speak with other patients and caregivers who have already experienced what you are just beginning to go through. There are many patient-to-patient communities (online and in person) that you can access for free. Links to several leading patient communities are included throughout this Guide and online at www.aPatientsPlace.com.
Skill 7: Writing a Complaint Letter
When a problem is not resolved to your satisfaction through phone calls or face-to-face conversation, you can write a letter and send it directly to the hospital or the facility where you were treated. You can even file a formal complaint with your state regulatory agency.
Include the following in a complaint letter:
- Your name, address, and phone number.
- The date(s) of your treatment.
- The name(s) of the health care provider(s) who cared for you.
- A short overview of your complaint.
- A statement about what you would like to see happen next.
- Copies of any supporting document or attachments (keep the originals).
Tip: Consider sending copies to others who can help solve the problem. Also, keep the originals organized in a safe place that you will remember.
Find Free Help Fast
Tip: If you need help advocating for yourself or a loved one, contact the Patient Advocate Foundation by phone at 800-532-5274. Their service is free, and they have professional case managers to help you. They have helped hundreds of thousands of families since 1996. You can learn more about them online at www.patientadvocate.org/.
Free Helplines for Specific Diseases and Illnesses
Find additional and updated phone numbers and resources at www.aPatientsPlace.com.
Alzheimer’s 24/7 Helpline: 800-272-3900
American Breast Cancer Foundation: 410-730-5105
American Cancer Society: 800-227-2345
American Childhood Cancer Organization: 855-858-2226
American Institute for Cancer Research: 800-843-8114
American Kidney Fund: 866-300-2900
The Assistance Fund: 855-845-3663
BenefitsCheckUp: 571-527-3900
Blood & Marrow Transplant Network: 888-597-7674
CancerCare: 800-813-4673
Cancer Hope Network: 800-552-4366
Caring Vice Coalition (chronic illnesses): 888-267-1440
Center for Medicare Advocacy: 860-456-7790; 202-293-5760
Chai Lifeline (childhood illnesses): 877-242-4543
Colon Cancer Alliance: 877-422-2030
National Center for Complementary and Alternative Medicine: 888-644-6226
Gilda Radner Familial Ovarian Cancer Registry: 800-682-7426
Good Days (chronic diseases): 877-968-7233
International Myeloma Foundation: 800-452-2873
Kidney Disease Helpline: 800-891-5390
Leukemia & Lymphoma Society: 800-955-4572
LIVESTRONG (cancer): 855-220-7777
Lung Cancer Alliance: 800-298-2436
Medicare Rights Center: 800-333-4114
Medication Assistance Helpline: 800-503-6897
National Alliance on Mental Illness: 800-950-6264
National Bone Marrow Transplant Link: 800-546-5268
National Cancer Institute: 800-422-6237
National Domestic Violence Hotline: 800-799-7233
National Eye Institute: 301-496-5248
National Kidney Foundation: 855-653-2273
National Organization for Rare Disorders: 203-744-0100
National Patient Travel Center: 800-296-1217
National Psoriasis Foundation: 800-723-9166
National Sexual Assault Hotline: 800-656-4673
National Stroke Association: 800-787-6537
National Suicide Prevention Hotline: 800-273-8255
Pancreatic Cancer Action Network: 877-272-6226
Patient Access Network Foundation: 866-316-7263
Patient Advocate Foundation: 800-532-5274
Patient Assistance Programs (prescription drugs): 877-267-0517
St. Jude’s Hospital (childhood cancer): 866-278-5833
Substance Abuse and Mental Health Services Administration: 800-662-4357
Susan G Komen (breast cancer): 212-560-9590
U.S Department of Health and Human Services (aging): 800-677-1116
Us TOO International (prostate cancer): 800-808-7866
Veterans Crisis Line: 888-457-4838
Patient Advocacy Organizations
Caregiver Action Network: http://caregiveraction.org/
Consumers Advancing Patient Safety: http://patientsafety.org/
Empowered Patient Coalition: http://empoweredpatientcoalition.org/
Hospice Patients Alliance: http://hospicepatients.org/
Medically Induced Trauma Support Services: http://www.mitss.org/
Patient Advocate Foundation: http://www.patientadvocate.org/
Patients with Disabilities
If you have a disability, you have a right to accessible health care under federal, state, and local laws. The most important of those laws is the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973. ADA and Section 504 require medical providers to ensure that people with disabilities have access to equivalent services as other patients.
Under these laws, you are considered an individual with a disability if you have a physical or mental impairment that substantially limits a major life activity, have a record of an impairment, or have already been designated with such an impairment. Major life activities include but are not limited to: seeing, hearing, walking, working, and major bodily functions. For more information on your rights as a disabled person, use the following links and resources.
American Foundation for the Blind – Disability rights resources for people with vision loss. www.afb.org
Americans with Disabilities Act – www.ada.gov
Advocating Change Together – A grassroots disability rights organization run by and for people with disabilities. www.selfadvocacy.org
Become a Better Self-Advocate
A 2015 article written by Elizabeth Renter in U.S. News and World Report mentions the following six ways to become a better self-advocate:
1. Understand your health insurance, especially the basics of your coverage. A recent report from the Kaiser Family Foundation found the more than 40% of people don’t understand basic health insurance terms, and many more were completely lost when asked to calculate how much they would have to pay out-of-pocket for specific hospitalizations.
2. Prepare to ask questions of your doctor(s) and health care providers. Make a list of your questions before your appointment. You may have very limited time to get the answers that you want, so be prepared.
3. Maintain your medical records. It can be a major hassle to get your medical records transferred from one provider to another. Ask for copies of your records whenever you check in for an appointment. Step-by-step instructions are included in Section 16 of the Patient & Caregiver Guide.
4. Review your medical bills for errors. An estimated 80% of medical medicals contain errors, the only way that you can protect your money is to review your bills.
5. Know when to ask for a second opinion. The Agency for Healthcare Research and Quality reports that 5% of all patents are misdiagnosed.[i] Getting the input of another physician can save you from unnecessary medical costs and procedure.
6. Take advantage of free preventive care and health screenings. This is a no-cost way to stay on top of potential health issues.[ii]
Your In Control
You should not be intimidated by medical professionals. They work for you. Doctors and hospital are striving to deliver the right care at the right time in the right setting. However, they need you to help them. When you share your questions, concerns, and preferences, your care providers can be confident that you clearly understand your choices, and they can better help you coordinate any care and services.
Like anything else, the more you advocate for yourself the easier it will become. Finally, there is growing body of research that shows that passive patients are less likely to get well than people who take an active role in their care. You can help yourself to wellness by being active, communicating effectively, and engaging with your health care providers.