How to Be a Patient Advocate

Health care can be confusing, intimidating, and overwhelming—especially if you are sick or elderly

When a loved one is facing a difficult illness, you can help make sure they understand their options and get the best care.Gorodenkoff/Shutterstock

“I just wanted to tell you how important what you’re doing is,” the young cardiology resident at Oregon Health Sciences University said to me in a quiet voice. “Your husband’s lucky to have you.”

I could barely swallow the lump in my throat. My husband and I had spent the past 11 days in the cardiac ICU, surrounded by heart patients who were all 20 or 30 years older than we were. He’d just undergone heart surgery, which left him shaky and vomiting.

My husband was 48 years old, fit and athletic, so we were pretty shocked when he started having tachycardia and even more surprised when the doctors diagnosed him with an exceedingly rare heart condition. I was at his side the entire time, sleeping on a back-breaking cot in his hospital room, while our four children spent the winter holidays without us.

My husband’s sudden illness catapulted me into a world of allopathic medicine, overwhelm, and grief. The most senior doctor told me bluntly to get our affairs in order and cancel everything. He didn’t say it outright, but his message was clear: It was likely my husband would die.

So now, in a fog of sleep deprivation and anxiety, the resident’s praise surprised me. I’d insisted the medical personnel double check the dosing of every medication, asked them to slow down and repeat information I didn’t understand, and challenged them—politely—on nearly every recommendation.

I felt that I’d been a thorn in the side of the entire cardiology team, both doctors and nurses. I was sure they didn’t like me. As hard as that was, I didn’t care: I knew it was more important to help my husband than be likeable or compliant. But here was a resident with tears in her eyes telling me that advocacy for my husband was what every patient needs.

Preventable Errors

There are several reasons a patient needs an advocate, especially if they can’t advocate for themselves effectively. One of the key reasons is preventable errors.

A 1971 study in the New England Journal of Medicine indicated that medical residents, often the only doctors you will see in an emergency room, make twice as many errors reading electrocardiograms after a 24-hour shift than after a good night’s sleep.

This study concluded: “It is apparent that interns deprived of normal sleep may experience transient psychopathology and impaired efficiency of performance.”

Yet medical residents still routinely work shifts of up to 30 hours, making the “least experienced doctors” “dangerously tired,” as a 2016 Huffington Post article put it.

So perhaps no one should have been surprised when a landmark study released in 1999 by the Institute of Medicine concluded that between 44,000 and 98,000 people a year were killed by preventable hospital errors.

Nearly 20 years later, a 2016 study from Johns Hopkins found that because errors are not recorded on death certificates, the situation may actually be much worse than previously thought, with approximately 250,000 people a year being killed by hospital errors, making it the third leading cause of death in the United States.

Other recent studies claim that the situation isn’t so bad. A 2020 study from Yale that examined hospital deaths puts the number of preventable deaths at closer to 22,000 per year, with 7,150 deaths attributed to “previously healthy” individuals.

But how reassuring is that? Most people aren’t admitted to hospitals when they are healthy.

In addition to the many errors that can cost patients their lives, the pharmaceutical drugs that form the foundation of our medical system present inherent dangers, even when prescribed correctly.

Dr. Peter Gotzsche, a Danish physician and medical researcher, argued in a 2014 paper in Controversies in Medicine that, “Our prescription drugs kill us in large numbers.”

Prescription drugs, Gotzsche reported, are the third leading cause of death all on their own, with about half of those deaths coming from drugs that are “taken correctly.”

And because drugs are often prescribed to resolve issues arising from lifestyle—like eating semi-toxic foods, being socially isolated, stress, or simply sitting too much—the condition persists and the drugs themselves create additional problems. These problems are then often treated with more drugs, creating a cascading prescription scenario that is a significant contributor to the fact that on average, people age 45 and older say they take four prescription medications daily, according to research from AARP. Rates of drug use increase from there, with many Americans over 65 taking 12 or more prescriptions, and this kind of polypharmarcy is linked to increased mortality.

Whether your loved one has a life-threatening illness, is spending the day for an out-patient procedure, or suffers from a chronic condition, they need support to get the best medical care.

How to Be an Effective Patient Advocate

Advocating for yourself or a loved one may brand you a trouble maker. But the truth is that it can, quite literally, save a life.

But how do you do it effectively?

Create Common Ground

Doctors are notorious for not hearing what patients are saying. A 1984 study found that only 23 percent of patients at doctor visits were given the opportunity to get through their “opening statement of concerns.” And a 2019 study found that physicians interrupt their patients after an average of 11 seconds.

This may seem counterintuitive. How are doctors supposed to figure out what’s wrong if they don’t listen to patients? The answer is that they often don’t figure out what’s wrong with their patients, and that can have deadly consequences.

It’s imperative to find a way to get through to the medical personnel at the hospital so that they will listen to you when it counts. In order to do that, you have to connect.

You need to make sure that the doctor is seeing the patient as a person and not just a “case.” You want to do whatever you can to enlist the doctor as a healing partner, and that often requires getting personal.

Find ways to connect with the human in the doctor. Does the doctor have kids? Did the doctor go to the same college as your sister? Do you love the same kind of coffee? It may sound silly, but noticing what you have in common with the doctor may make just enough difference to your encounter to make a busy doctor pay a little more attention.

Be Prepared and Communicate Effectively

Any patient or patient advocate should have a detailed record of the patient’s medical history and have given some thought to essential points they want to communicate with their doctor. Be succinct but thorough. If the patient or patient advocate begins a long-winded and indirect explanation of current medical issues, the doctor is more likely to be impatient and dismissive. Doctors operate within an increasingly mechanistic health care system that compels them to accelerate visits and quickly prescribe drugs, tests, or surgery.

To avoid problems that arise from that, be clear on essential problems and concerns, and make sure that you are clear on what the person you are advocating for is experiencing. Give your doctor essential information concisely.

Take note of any trends or concurrent symptoms. For example, if the patient always experiences a certain pain after a certain food or activity, or noticed a shift in their symptoms, energy level, or pain after a change in medication, record this information and communicate it.

Take Notes

Stress can affect your ability to think and retain information. That’s why it’s critical to be as organized as possible and write everything down so you can review it later when you aren’t as panicked. Try to keep it all together in chronological order for easy reference, perhaps in a brightly colored notebook that is hard to lose.

Take notes on your phone, on a legal pad, or in a notebook.

Write down the date and time as well as the name of any doctor, nurse, or social worker you speak to. Note the names of any procedures recommended and drugs prescribed, along with their dosages. Check your spelling.

You can also record or even video conversations and transcribe them later.

Research Everything

Despite the scorn some doctors heap on patients who use the internet to research their symptoms, diagnoses, or prescribed drugs, research is essential. Yes, you can scare yourself if you read too much. But in a hospital situation, you need information. This is particularly true because of a problem known as “translational lag.” It can take up to 17 years for new research to be translated into actual clinical practice. This means that the drugs or procedures being prescribed are often out of sync with the best available information.

One of the best places to begin is with UpToDate, which is a web research tool for doctors. Though much of the information is behind a paywall, nearly every article will provide you useful references. Also try using a less biased search engine like DuckDuckGo instead of Google. Be as specific as you can; combining a few of the most specific terms can often lead you to the information you need.

Functional medicine sites will often offer more insight into root causes (and potential interventions) than mainstream medical sites, and that may turn out to be very valuable information.

If you have a diagnosis, make sure you read about it on several different medical sites. There may even be a nonprofit specifically for patients with that condition. If there is, don’t be afraid to call them. That’s what they’re there for.

Also be sure to research prescribed medications. Find out their effects, what the dosage range should be, and what the components are. Make sure you do a search specifically for “side effects” and another for “contraindications.” You can access abstracts of actual scientific studies on the National Institutes of Health’s PubMed.gov website.

I found out that two of the drugs my husband was prescribed interacted negatively with grapefruit, one of his favorite foods. But his doctors, nurses, and even the pharmacist forgot to mention that grapefruit was counter-indicated.

Ask Questions

If there’s anything you don’t understand or didn’t quite hear the first time, ask! It’s your right to be informed, and it’s the doctor (or nurse’s) responsibility to answer your questions.

If the doctor acts like your questions are annoying or belittles you for not understanding, it can be difficult to persist until you get the answers you need. In that case, you need to understand that that is the doctor’s problem, not yours. It’s your responsibility (and your right) to make sure that your loved is getting the care they need. But you can’t do that if you are left in the dark.

It’s particularly important to ask about the details of what’s involved in any proposed medical procedure, as well as the risks. Sometimes doctors are so intent on treating a patient, they overlook major problems that are common after some surgeries or drug treatments, including pain or reduced function.

Whenever medication is given, ask what is being given and the dosage. Always check to see if the medication and dose match up with what you were told. If they don’t, find out why. That simple question may save your loved one’s life.

You also have a right to know what the financial implications will be for any particular course of action. Insurance plans vary, and hospitals visits often incur bills from three or more entities. Health care can be very expensive, even if you have excellent insurance. You have a right to know.

Ask About Alternatives

Can something else be done that might have the same effect? What about taking a “wait and see” approach? What are the risks of doing nothing and letting the body heal itself?

You may be able to achieve the desired results with low-level interventions (like vitamin supplements, physical therapy, or acupuncture) rather than more drastic interventions (like potentially addictive prescription medications and surgery). Sometimes the best way forward is a combination of both.

A life or death situation requires quick decision-making. But try your very best to get a second or even a third opinion—especially if the diagnosis is serious. If that means getting on the phone with a friend’s cardiologist husband, or your high school friend who became a nephrologist, do it.

Get Support for Yourself

Being a patient advocate is exhausting, stressful, and insomnia-inducing. But it’s important not to let yourself get depleted. Eat as well as you can, try to sleep, take time to meditate, write in your journal, and practice other forms of self-care. Cry as much as you need to, out of earshot of the patient.

Make a list of friends and family who can help with your children, walk your dog, or sit beside you and hold your hand. Be specific about what you need. Most people want to help others in crisis, but many don’t know how.