When it comes to our health, it's easy to feel too intimidated or overwhelmed to question treatments, challenge practitioners, or hold the system itself accountable. But medical professionals insist that the lack of active participation by the patient in their care can be costly — not just financially, but in their actual well-being. U.S. News reported just last year that up to 98,000 hospital patients die annually as a result of medical errors, 7,000 of which are due to medication mistakes. Below, experts share tips for proactively working to prevent this, and ensuring the best possible care.
1. Be thoughtful and discriminant when choosing the doctor or hospital for you.
This might be the most overwhelming decision to make as a patient, but it's a crucial one — you're putting your health in this person's hands. Consider multiple factors: Do you have a recommendation from someone you trust? Is the doctor experienced in treating your disease? How is the hospital's reputation? And, when it comes down to it, how does the physician make you feel?
"Your doctor should be someone you feel comfortable sharing anything with," says Dr. Daniel Neides, family practice physician at Cleveland Clinic's Wellness Institute.
2. Learn how to communicate effectively with your chosen physician.
Your relationship with your physician is a two-way street, and the importance of regular, positive communication between doctor and patient can't be overstated. Be forthright and honest — if you feel hesitant to share potentially embarrassing information, this could be a sign that you need a different doctor that you're more comfortable with — and do some prep work before you meet.
Stacey Huber, American Cancer Society patient manager at Mercy Hospital in Baltimore, recommends drafting a list of questions and concerns you want to address, and then taking precautions against forgetting the responses.
"It is helpful to have someone else go with you as a second set of ears," she says. "Take notes as the doctor is talking to you and if you have a hard time remembering things, take a recorder and ask the doctor if he minds if you record the conversation."
3. Find out how to reach your physician after hours.
Negotiate the guidelines of communication before you need to use them: How can the physician be reached after hours? Does she accept emails, or calls to her cell phone? "You'll find that physicians have their own preferred mode of communication," says Neides, "so it's always important to ask them directly."
4. Research your diagnoses — but know how to weed out the sources that aren't credible.
It's a good idea to keep yourself informed through independent research, especially after being given a diagnosis, but it goes without saying that you can't trust just anything the internet gives you. Steer clear of personal blogs, where people can publish literally anything, or advertisements posing as informational sites.
Says Dr. Dana Simpler, internist at Mercy Hospital in Baltimore, "If the source is giving medical information AND selling something — whether it is a supplement, prescription medicine, or procedure — be aware that this is advertising and not unbiased medical information. If the source is from a nonprofit medical society, university, or government agency, the information is more trustworthy, although it may also be very mainstream."
Still not sure if the site you're reading is legitimate? Look for accurately linked sources within the article itself — according to Neides, that's a good sign that it can be trusted.
5. Get a second opinion.
Getting a second opinion isn't just allowed; it's encouraged — by physicians and, often, even insurance companies.
"If you are questioning the diagnosis, treatment plan, or just don't feel that you and the physician are on the same page, that's probably a good opportunity to seek another opinion," says Neides. "If you have a very serious diagnosis that's considered life-threatening, it's a good idea to seek another opinion to ensure everyone is aligned with one treatment plan."
And while you can certainly ask your current physician for recommendations, a good way to ensure objectivity is to find a second doctor through outside avenues. Neides recommends using trusted friends or family members as references for providers outside of the medical center you're currently going to.
6. Don't sign an informed consent form unless you are truly and thoroughly informed.
As a patient, your voluntary and informed consent is required for any test, treatment, or procedure. For simpler procedures — like a physical exam with your primary care physician (PCP) — "implied consent is assumed," but more invasive procedures will require written consent. Don't sign a form without fully understanding what that procedure is, along with its risks, benefits, and possible alternatives. Ask questions, and get specific.
"You might ask not only the general rates for complications across the U.S., but the rate of complications for this hospital and even this doctor," says Dr. Tia Powell, director of the Montefiore Einstein Center for Bioethics. "Is this a procedure that this doctor does often? How often? It is a new procedure or one that is well-established? Are there alternatives that might be considered but are not offered at this hospital or by this doctor? If they don't offer that alternative, why?"
If you have lingering concerns, Neides recommends checking in with your PCP before signing. "They're your advocate and will point you in the right direction."
7. Keep track of all of your medications.
Don't assume that every doctor you're seeing — even those who are prescribing medications to you — is aware of what you're already on, so a good way to avoid potentially dangerous drug interactions is to check in with each treating physician about what's in your system. This is especially important while you're in the hospital and possibly being treated by a rotation of physicians and nurses, but that attention should continue when you leave too.
"Make sure you know what you're supposed to take, when you're supposed to take it, and how often," says Neides. "That should be cross-checked every time you have a doctor's appointment, regardless of the doctor you're visiting."
8. Request copies of your medical records — and examine them closely.
Under the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule, you have the right to inspect, review, and get a copy of your medical records — and you should use that right. Records will sometimes offer a more thorough account than your physician tells you directly (but be sure to talk to him or her for a full understanding), and, every so often, will reveal a mistake.
"It's very important for the patient to review their medical record and call attention to any inaccuracies," says Neides. "The more a patient is involved with their own record, the more likely any type of medical error will be avoided. Patients are good cross-checkers for themselves."
Some facilities will charge for access if they're still printing paper copies, but many have transitioned to electronic records. Request them from your doctor's office or the hospital's medical records office and keep an updated file for yourself.
9. Make sure your family medical history is up-to-date and accurate.
The Mayo Clinic recommends collecting at least three generations' worth of information — including things like medical conditions, mental health conditions, and lifestyle habits, as well as cause of death (and age at the time of the death) for those who are deceased — and translating it into a visual depiction or diagram. (More information and useful resources here.)
But if that task is too overwhelming, focus at least on your immediate family. "First degree relatives' history are the most important to the provider," says Neides. "This is considered your biggest personal genetic risk (parents, children). It's not absolutely critical that you go all the way back to your great-great uncle."
10. Consider alternative or complementary medicine.
Don't be afraid to incorporate alternative medicine into a more holistic treatment plan, which Neides says is most successful for either those whose needs are not already being met by allopathic (or mainstream) medical treatments, or those who are already open to alternative treatments like herbal therapy, acupuncture, or reiki. (The National Institutes of Health [NIH] is a reliable source for information on these methods.)
Just be sure to keep your treating physician(s) in the loop. "Make sure you tell your doctor about any supplements or other alternative agents you are taking," says Powell, "as some of these prevent the action of medications like oral contraceptives and other medications."
11. Pay attention to your medical bills, and learn how to actually make sense of them.
Make sure you keep track of what exactly you (or your insurer) are being billed for, and cross-check billing paperwork for any discrepancies. If you are insured, there will be three forms that you should decipher and compare: first, the list of services provided, which you can request whenever leaving a hospital or office visit; second, the statement from the doctor's office or hospital, which should show the same list of services along with charges; and third, your insurance company's Explanation of Benefits (EOB), which will list the services and how much they paid.
Each of these forms will show a five-digit CPT code alongside the services provided, and it's a good idea to match them up to ensure they are identical. Since these codes are controlled by the AMA, patients don't have free access to a comprehensive database, but if you are interested in looking up a specific code you can find more information here.
12. Don't wait for a problem before seeing your PCP.
Of course, there's something to be said for preventative care. Neides recommends annual visits, even if you don't have chronic conditions: "It's important your physician knows who you are so that the best care possible can be given in the future."
13. Assign a health care proxy.
All states allow you to appoint an advocate — depending on which state you live in — a health care proxy, agent, or surrogate to communicate and make medical decisions for you in the event that you can no longer speak for yourself. Though it might not seem immediately necessary (and, many times, it won't be!) it's a good idea, especially for patients undergoing hospital care.
"It doesn't matter what age you are, it's important to have someone other than yourself be able to serve as your health advocate," says Neides. "If you aren't able to be your own personal health advocate, you want someone trustworthy to make your decisions, and someone you're confident in to make your wishes known.
To legally appoint a proxy, you'll have to fill out a medical power of attorney form (also known as a "living will" or "medical directive") and be sure to provide it to your physician(s). According to Powell, most states will allow next of kin to make medical decisions even without this form, but she still suggests signing — and then talking to your proxy about what that means.
"What is most important is that you tell the person who will make decisions about your values and preferences," she says. "Proxies act more decisively and with greater comfort when they know they are doing what you would want."
14. If you still feel uncomfortable or unsure of the treatment you're receiving, reach out to a patient advocate.
Though you can certainly hire a private patient advocate, your hospital's patients relations department has representatives on staff to help you navigate this often overwhelming experience. Use them!