Protecting Your Interests
Health care in the United States is a big and complicated business. It is funded by and delivered through a combination of powerful public and private organizations. All of them have interests that conflict with the best interests of patients.
Today, the business of medicine makes it difficult for even the best doctors to find the time and the resources to help their patients solve their health care problems. These same doctors, as well as nurses and hospital executives, struggle themselves to get safe, quality health care when they become patients.
This Patient and Caregiver Guide was developed to help you control your health care choices and finances any time that you engage with our complicated and broken health care system.
The Guide walks you step by step through solutions to almost any health care access, quality, or financial situation. Throughout these pages, you’ll find contacts, phone numbers, education, tips, guidance, information, and connections to experts and resources that can help you get the safest, highest-quality, and most cost-efficient health care possible.
Regardless of your age, income, or circumstances your health and well-being are likely among the most important aspects of your life. Yet, when it comes to our health, we often place our trust blindly in physicians who have limited time to guide us, in hospitals that we know little about, and in a health care system that kills and injures millions of people every year due to safety, quality, and cost issues.
Tip: Counting on doctors and other health care professionals to ensure that you get the safest, highest-quality, and most affordable health care increases your risk of becoming a victim.
You can dramatically influence your own health outcomes and well-being through your choices about your diet, activity, self-care, insurance, doctors, treatments, finances, and engagement with your health care teams. The bottom line is that you must take an active role in your own health care to ensure the best outcomes. The best way to accomplish this is through three simple rules that every person can follow:
- Ask questions until you fully understand your circumstances and choices.
- Make sure that your preferences are heard.
- Follow through until your concerns are addressed.
Unfortunately, our broken, fragmented, and complicated health care system makes it difficult for patients and their caregivers to collaborate with their health care providers. So, how do you overcome these obstacles?
- Become and stay fully engaged with your health, doctors, and health care teams.
- Learn everything you can about your condition and circumstances when you are diagnosed with an illness.
- Know your health insurance.
- Get qualified and expert help whenever needed.
To help you meet any health care challenge, every section of the Guide provides:
- Step-by-step instructions
- Experts and resources
- Phone numbers
- Contact information
To ensure that you can easily access updated and comprehensive information, he Dr.Me Guide, provides a companion Mobile Help Index, available 24/7, at www.aPatientsPlace.com.
Control Your Health
The top health risk factors haven’t changed much over the years. They include smoking, being overweight, having a bad diet, not getting enough exercise, maintaining high levels of ongoing stress, high blood pressure, and high cholesterol. Your choices have an immediate impact on these risk factors. Your income, race, gender, and circumstances are not major factors.
The keys to reducing your health risks are to identify which ones pertain to you, understand them, and start taking little positive steps that are easy for you to add to your life every day. Some examples include:
- Substituting one glass of water for one glass of soda each day.
- Taking a walk around your block once a day when you would normally sit and watch TV.
- Replacing one high-fat, high-sugar meal with a salad.
- Getting a free blood pressure test and/or health screening each year.
- Screening and choosing a doctor to serve as your primary care physician.
Tip: Trying to make major changes quickly is not usually effective or long-lasting.
The best ways to take control of your health care are to:
- Stay as healthy as possible by taking good care of yourself.
- Use as many free and low-cost screenings as possible.
- Keep your health care costs down.
- Work with your doctors and health care teams.
- Strengthen the areas of your body that are weak.
Pay attention to your body’s natural signals that something may be wrong. You can’t control your genetics, but you can control what you do about your individual risk factors.
The Earlier the Better
Another way to take control of your health care is to recognize potential problems early, learn what to do when you spot a problem, and discuss with your doctor what’s treatable by yourself and what needs medical attention.
Once you know how to spot common health problems early and what to do when you find them, you can stop minor and routine issues from becoming complicated and costly health problems.
Tip: More than 80% of all health problems are cared for in the home.
Since each person’s actions and choices have a major impact on their health and well-being, patients must be at the center of their own health care teams to get safe, quality health care.
Fortunately, there are many tools to help us today, and many others are in development. Online symptom checkers, free helplines, wearable devices, virtual doctor appointments, home-health monitoring, insurance provider portals, online patient communities, free medical bill review services, and others are a few of the resources available to help patients manage their health care and engage with their doctors and health care team members.
Today, more than 20% of physicians are using mobile technology with their patients, and a 2015 survey of 500 doctors by the Texas firm Research Now concluded that almost half of the physicians surveyed planned to adopt mobile apps to communicate with their patients. Related research found that 96% of consumers using mobile health care apps believed that their devices are helping them improve the quality of their lives. Calorie counters, blood pressure monitoring, and activity tracking are among the most popular apps, and new apps are being developed almost daily.
One example of how mobile health care applications are helping patients with chronic illnesses is a project by Banner Health called Intensive Ambulatory Care. This project uses multiple mobile devices for home health monitoring to help 600 patients with multiple chronic conditions. Results from the initial 135-patient pilot program showed a 27% reduction in the costs of care. This was primarily due to a decrease in hospital admissions, shorter lengths of stay, and lower outpatient costs.
The program demonstrated the commonly held thought that mobile devices can have many beneficial results when they are used in a structured system. Conversely, the same mobile devices can increase risks due to a lack of care coordination and misleading information when they used in a nonstructured environment.
Tip: Review and contribute to an updated and categorized list of leading health care apps by using your smartphone or laptop to access www.aPatientsPlace.com.
Even though the best medicine is staying healthy, this Guide does not discuss all that goes into keeping physically, emotionally, and spiritually healthy. Maintaining your health and wellness deserves its own focus. Instead, this Guide focuses on ensuring that you can take control and optimize your health care whenever you suspect that something may be wrong with your health.
Tip: Only you can optimize your health and well-being.
Let’s look at some of the basic steps required to take control of your health care, work with your physicians and health insurance provider, and manage your health care–related finances.
Step 1: Control Your Choices
Unless you experience a medical emergency and you are not conscious, you can control your health care choices. You are the master of your body and life. While you can’t choose when you get a serious injury or illness, in all non-emergency situations, you do get to choose what to do about them.
To make good choices, you’ll likely need help from family, friends, health professionals, and other experts. The question is, how do you learn enough to make the right choices when your doctors have fifteen minutes on average for an appointment, your medical records from other doctors and providers may not be accessible by your health team when needed, and it’s virtually impossible to tell exactly how much tests and treatments your physician recommends will cost?
Tip: Connecting to people who have already gone through a similar diagnosis is extremely helpful. Leading online patient communities are discussed in Section 3, and a complete and updated list can be found at www.aPatientsPlace.com.
Step 2: Ask Who, What, Where, When, Why, and How Much, All the Time
If you accept everything you are told by your health providers without asking questions, you are increasing your risk of being the victim of mistakes, getting lower quality health care, and spending more money than you need. If you don’t ask questions, who do you think will? If you don’t tell your doctors and health providers what you want, how will they know?
Researchers at the world-renowned Johns Hopkins Medicine estimate that more than 250,000 Americans die, and many more are injured, every year from medical errors. The more common preventable errors are:
- Patients being misdiagnosed because doctors are hurrying and are reluctant to ask a second physician’s opinion.
- Health care providers mixing up the names of drugs to be administered to patients.
- Hospital-acquired infections. This occurs in 5 to 10% of all patients admitted to acute care and long-term care facilities in the United States.
- Surgical errors—both reported and unreported. In many cases, the errors occur after surgery due to failure to diagnose common complications.
Data from the U.S. government estimates that as many as 80% of hospital bills contain mistakes. If you don’t ask about your out-of-pocket costs, negotiate fees when you can, and review all your bills for errors, you are increasing the risk that you will pay more than you need.
The prior examples only scratch the tip of the problem. The important thing to remember is that your actions can ensure that you are not victimized by the problems that have become a part of the health care system.
Step 3: Controlling Health Care Quality and Safety
The most important steps you can take to ensure that you get the safest and highest quality health care possible are to become a smart health care consumer and to be involved in decision making all the time.
Quality health care means different things to different people. Some people think that getting quality health care is seeing the doctor right away whenever they want. Other people feel that quality health care is being treated courteously by the doctor’s staff and having a doctor spend a lot of time with them. Still others think quality health care means that their insurance provider does not put them on hold for ten minutes every time they call to get answers to basic questions.
According to the National Committee for Quality Assurance (NCQA) quality health care is:
- Doing the right thing (getting the health care services you need),
- at the right time (when you need them),
- in the right way (using the appropriate test or procedure),
- to achieve the best possible results.
Whatever your definition of “quality” is, what matters most is:
- Ensuring that you get the safest and highest quality health care possible.
- Getting a quick and accurate diagnosis.
- Finding the most effective treatment and/or management for your condition or illness.
- Making sure that your treatment and care is coordinated between everyone on your health care team(s).
- Recovering and returning to the highest quality of life possible given your situation.
- Managing your health care finances so you do not pay more than you need to.
You might think that every doctor, nurse, pharmacist, and hospital provides high-quality care. Unfortunately, this is not the case. As noted earlier, doctors, hospitals, pharmacists, therapists, drug providers, equipment manufacturers, and suppliers all serve other interests than the patient’s. Some of these health care providers struggle financially. They all have trade groups and industry organizations lobbying for their interests.
The quality of health care services delivered to each patient varies depending on where you live, what providers you see, when you see your providers, how much experience your providers have in diagnosing and treating your condition, and other factors. Quality also varies from state to state and from one doctor’s office to another.
Tips for controlling costs:
- You pay less when you use in-network providers.
- Take advantage of free tests and preventive screenings held in your area.
- Use urgent care centers instead of emergency rooms unless you have a true emergency.
- Ask your doctor or pharmacist about generic versus brand-name drugs.
- Organize and keep track of your medical records.
- Follow through on your doctor’s prescribed treatments
Step 4: Plan for the Worst—Advance Directives
Advance directives are written instructions that allow you to state what you’d prefer if you are too ill to make your wishes known. Your family and doctors will follow your advance directives if you are unable to make your own health care decisions. Anyone age 18 or older may prepare advance directives.
Tip: Each state has its own laws regarding advance directives.
There are three main kinds of advance directives: living wills, health care proxies, and Do Not Resuscitate (DNR) orders.
A living will is a written, legal document that spells out the types of medical treatments and life-sustaining measures you do and don’t want. These often include mechanical breathing (respiration and ventilation), tube feeding, or resuscitation. In some states, living wills may be called health care declarations or health care directives.
A health care proxy is more detailed than a living will. It allows you to appoint the person or persons you trust to make health decisions for you if you cannot. It also allows for more detailed advance care planning such as your wishes about resuscitation, feeding tubes, antibiotics, hospital transfers, respirators, and more. Because the health care proxy involves more decisions, you may want to talk to your doctor about various options for care. For instance, many people would be willing to try a feeding tube or a ventilator for a while, but then want it to be stopped if their condition did not improve.
Also, talk to family members and the person(s) you have appointed as your proxy to be sure they understand your wishes. A health care proxy is also known as a medical or health care power of attorney, sometimes referred to as a MPOA or a HCPOA.
A Do Not Resuscitate (DNR) order is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. Advance directives do not have to include a DNR order, and you don’t have to have an advance directive to have a DNR order. Your doctor can put a DNR order in your medical chart.
Advance care directives are legally valid everywhere in the United States, but laws concerning them vary from state to state. Forms approved for the state you live in are available from many different health care organizations and institutions.
Unexpected end-of-life situations can happen at any age. All adults should have advance directives. Injury, illness, and death aren’t easy subjects to talk about. With careful planning, you can ensure that you receive the type of medical care you want, and that you have taken the burden off your family and loved ones for trying to guess what you would have wanted.
Discussing Advance Directives
Follow these steps to get the conversation going about your wishes in the event you are unable to speak for yourself.
Step 1: Start the Conversation
Let your loved ones know that you want to implement advance directives. There are many great online resources that provide suggestions on how to start the dialogue with your family.
Step 2: Explain Your Feelings
It’s generally best to approach the subject in a matter-of-fact and reassuring manner. However, make sure you get your feelings across about medical care and what you’d want done in specific instances. Keep in mind that a living will cannot cover every possible situation. Therefore, you may also want a medical power of attorney (MPOA) to designate someone to be your health care agent.
An MPOA will be guided by your living will, but he or she will have the authority to interpret your wishes in situations that aren’t described in your living will. An MPOA may also be a good idea if your family is opposed to some of your wishes or they are divided about them.
Step 3: Choose a Health Care Agent
Choosing a person to act as your health care agent may be the most important part of your planning. You need to trust that this person will have your best interests at heart, understand your wishes, and will act accordingly. She or he should also be mature, level-headed, and comfortable with candid conversations. Don’t pick someone out of feelings of guilt or obligation.
Your health care agent does not need to be a family member. You may want your health care decision agent to be different from the person you choose to handle your financial matters. It is easier, but not necessary, if the person you choose lives in the same city or state as you do.
Step 4: Identify the Treatments You Want
Think about what’s important to you. For example, is it important to remain independent and self-sufficient, or what would make your life not worth living? Would you want treatment to extend your life in any situation? Would you want treatment only if a cure is possible? Would you want palliative care to ease pain and discomfort if you were terminally ill? Although you can’t predict what medical situations will arise, be sure to discuss the following treatments:
Resuscitation. Restarts the heart when it has stopped beating (also known as cardiac death). Determine when you would want to be resuscitated by cardiopulmonary resuscitation (CPR) or by a device that delivers an electric shock to stimulate the heart.
Mechanical ventilation. Takes over your breathing if you’re unable to breathe on your own. Consider if, when, and for how long you would want to be placed on a mechanical ventilator.
Nutritional and hydration assistance. Supplies the body with nutrients and fluids intravenously, or via a tube in the stomach. Decide if, when, and for how long you would want to be fed in this manner.
Dialysis. Removes waste from your blood and manages fluid levels if your kidneys no longer function. Determine if, when, and for how long you would want to receive this treatment.
You can also specify in your advance directives any wishes about donating your organs, eyes, and tissue for transplantation or your body for scientific study.
Tip: If you wish to donate your body for scientific study, contact the medical school closest to your home for details.
Your advance directives should be in writing. Fill out the forms for your state. Although it isn’t required, you may want to consult an attorney about this process. State-specific forms are available from a variety of websites. The National Hospice and Palliative Care Organization has the forms for most states available on its website (www.nhpco.org).
Once you’ve filled out the forms, give copies to your doctor, the person you’ve chosen as your health care agent, and your family members. Your instinct might be to put your advance directives somewhere safe, like a safe-deposit box, but that will only make it difficult for your loved ones to find the forms when they need them.
Review your advance directives from time to time. As your health changes or your perspective on life changes, you might reconsider some of your advance directives. Also, consider if you want to revise any of the instructions. You can change your mind about your advance directives at any time.
To revise your advance directives, you follow the same steps you used to create them.
- Get new advance directive forms to fill out.
- Discuss your changes with your friends, family, and doctor.
- Distribute copies of the new advance directives and ask everyone to destroy the earlier version.
Tip: If there isn’t time to redo the paperwork, you can always cancel your advance directive by telling your doctor and your family.
Remember, a living will or MPOA only goes into effect if you are unable to make medical decisions for yourself, as determined by your doctors.
Controlling your choices, asking questions, and advanced planning will help ensure that you get safe and quality health care. No doubt, some day you will find yourself needing the help of a doctor or other health provider. This Guide is for that day. However, it is just a guide; there are other resources you can use in conjunction with it.
Find a trusted friend or loved one to help you. If you do not have anyone in your life who you feel can help you, ask your doctor for resources in your community that are available. If your doctor does not help, call the patient services department at your local hospital. If that does not work, go to the library and search the Internet for help in your local area. Every community has help. You do not need to be alone.
This rest of this Guide will take you through each step to safe, quality, and affordable health care. Leading your health teams starts by making health a priority and listening to your body. When you suspect something might be wrong, use this Guide and Dr. Me’s mobile help index at www.aPatientsPlace.com to get all of the help you need.
However, if you choose to simply let things happen, do as you’re told by your health care and insurance providers, not question anything, or advocate for yourself, then you are choosing to accept the possibility of riskier, lower quality, and more expensive health care. The choice is yours.