Not all doctors get "informed consent" from patients—here’s why it matters
Editor's note: When it works at its best, the U.S. healthcare system is a partnership—patients and doctors working together to achieve the best outcomes possible. But before this can happen, you need to know that you have the power to create the type of health care experience you’d like to have. Research shows that when you feel empowered in your medical care, you get better faster and stay well longer. Amino is dedicated to helping you feel empowered. That’s why we present this series of articles that focuses on your rights as a patient—both inside the hospital and out. First up, we explored the Patient’s Bill of Rights (yes, that’s a thing!). Next, we’re focusing on everything you need to know about "informed consent."
According to the American Medical Association (AMA), a patient can only make an informed choice about whether or not to receive a treatment if they have enough information about the treatment, its benefits, and side effects.
It’s called informed consent, and it’s your doctor’s job to provide you with this information.
Informed consent is meant to honor your right to decide what’s done with your body. Rules and the law pertaining to this topic have changed over the years, but one thing hasn’t: failure to obtain informed consent is a crime—medical malpractice, specifically—and the doctor can be charged with negligence and battery.
Your doctor or health care provider must give you enough information about your treatment so you can make an informed decision. But just how much information is “enough?” The AMA lists six basic features that make up informed consent:
- The diagnosis, if known
- The nature/purpose of the treatment or procedure
- The risks and benefits of said treatment or procedure
- Alternatives to the treatment or procedure
- The risk and benefits of alternatives
- The risks and benefits of not having the treatment or procedure
Informed consent isn’t required for all procedures or in all situations. For instance, in all but a few cases, minors can’t provide informed consent—their parents or guardians assume this responsibility. It’s also not required in cases of life-threatening emergency, where you may not be conscious to give consent; nor in cases where you have impaired decision-making ability, as in dementia. In this instance, doctors must find an alternate decision maker, like a family member.
Standard practices vary when it comes to doctors getting informed consent, and that hurts patients
There is no “right” way to obtain informed consent. In fact, while all 50 states have laws that mandate some form of it, the specifics vary from state to state and region to region. In addition, each medical institution typically develops its own list of surgeries, procedures, or situations where informed consent is needed.
Jennifer Schmid is a naturopath and registered nurse in Santa Clara, CA. She says that lack of consistency, combined with other issues affecting the health care industry, create barriers to obtaining true, informed consent in many situations.
"The reality is that we have a system-wide failure as far as patient empowerment and informed consent go. Insurance companies dictate the choices they’ll pay for. Doctors are limited in their time. Patients don’t know what to ask. [When they do ask a question] it’s sometimes hard to get a straight answer. People really aren’t given answers that make them feel empowered."
And that’s unfortunate, Schmid says, because research shows that patients who feel more empowered about their health care have better outcomes and higher survival rates. The way only to achieve this in an overburdened system, she adds, is for patients to be their own best advocates. Schmid urges patients to take the initiative—to do the research and ask the hard questions to make sure you’re informed before you undergo any procedure.
"A lot of people don't realize they have the right to ask their physician or prescriber for information about the procedures and medications the provider is recommending," she says. "I really want people to know that they have the right to ask. If the doctor is too busy, ask the resident. Don’t be afraid to be empowered."
You’re allowed to refuse treatment
A key component of feeling empowered about your health care is having the freedom to refuse treatment after learning about the risks and benefits involved. You have this right, even if your doctor believes it’s a bad decision. This is called informed refusal.
But there’s a catch: If your doctor believes for some reason that your decision-making capacity is compromised (in cases of extreme emotional stress or intoxication, for example), you may not be allowed to refuse treatment. In this case, the law would side with the doctor, holding that the average reasonable person would consent to treatment in order to prevent permanent disability or death.
There’s really only one way to make sure your wishes are honored—and to maintain control of your treatment decisions in these situations: Fill out an advance directive and living will while you’re healthy. These allow you to decide—while you’re competent and before an emergency occurs—what treatments you do or do not want, should an emergency, illness, or injury happen that renders you incompetent.
In our next article, we’ll examine patient advocacy—what it is, why it’s important, and how to do it.
A version of this post was published on Forbes.