You know when you’re at a new doctor’s office, and they hand you a stack of papers just big enough to keep you preoccupied during your wait? No, they didn’t print out the iTunes agreement. Some of those include privacy documents and a patient bill of rights. You have legally protected rights as a patient, and it’s important that you know what those are, in case they are ever infringed upon. If they are violated, you can talk to patient experience at the institution, speak with a patient advocate, discuss it with an attorney, or contact the HHS Office for Civil Rights. Let’s talk about some of the universal rights you have when receiving medical care.
All medicine (should be) created equal
You have a right to access healthcare in the United States (this doesn’t mean free care). Regardless of race, gender, religion, sexual orientation, language, or disability- you should receive the same excellence in care. Discrimination in healthcare can occur at many levels- having a provider who is prejudiced against you, being denied services based on demographics, not having wheelchair-accessible entrances or translator services available. If you ever feel that you aren’t receiving quality care, speak up! Discuss it first with your provider in a non-confrontational way, and tell them what would make you more comfortable. This will help them become better and others receive better care. If you don’t feel comfortable doing this or don’t feel better after talking to them, find a new provider- it’s important to know that you will receive good, non-judgmental care no matter what.
Snitches get stitches… or lawsuits
Patient-provider confidentiality is one of the hallmarks of a therapeutic relationship, and allows you to be open and honest about potentially embarrassing things. This dates all the way back to the Hippocratic Oath, a physician code of conduct from the fourth century BC. In the US, this was further formalized in a 1996 law called Health Insurance Portability and Accountability Act, or HIPAA. This specifies that Protected Health Information, meaning anything that could be used to identify medical information as yours (name, social security number, payment history, or even just really specific medical details), must be kept secure and only accessed by people who are helping provide medical care to you.
What does this mean? Your doctor can only discuss your medical information with you, unless you have signed a release for someone else (like your spouse or parent). They also can’t share your information in any identifiable way- so they shouldn’t post about you on Facebook, or talk about you on the elevator, or hire an airplane to write your diagnosis in the sky. You also own your medical information, so you can request your own medical records (they may need up to 30 days of heads up to pull everything together). If you decide to participate in medical research where they need your records, you’ll have to give them permission.
There are some exceptions to this right. Certain information may have to be disclosed to law enforcement if there is a subpoena or a warrant. If a provider determines that you or someone else is in immediate danger (you disclose that you plan to commit suicide or harm a specific person), they are legally required to report that. Similarly, they are required to report suspected child or elder abuse. There are also some infectious diseases, like chlamydia and gonorrhea, that are reportable, meaning physicians have to tell the CDC. All of these provisions are aimed at protecting you as well as others, and preventing privacy protection from getting in the way of providers’ care.
Knowledge is power
Informed consent is one of the more complicated, and thus most often violated, patient rights. For most of medical history, it was advised that physicians hide bad information from their patients, so as not to worry them or even make them sicker through bad vibes. In 1849, Worthington Hooker was one of the first physicians to reject the idea that doctors should lie to their patients, and over time, this became common practice.
Informed consent is necessary before starting any medicine, surgery, or clinical research; it’s not as simple as telling you what the treatment is. Your provider must explain the benefits, possible risks, and potential alternatives. They also must give you time to ask questions, and talk it over in more detail if you want. While almost all providers remember to go through the motions of informed consent, some will forget to break it down into understandable parts (believe me, it’s hard to be sure what non-medical people know and don’t know). After being consented for a research study, only 70% of subjects could explain the study’s purpose, and just 55% could name 1 risk of participation. If you’re not sure you understood, ask. It’s their job to help you know what you’re signing up for.
There’s an important requirement for informed consent- that you are competent (you are capable of making your own decisions). This means that you can explain your medical condition, as well as what it would mean if you decided for or against treatment. If you were incompetent (most commonly because patients are too sick or have dementia), providers would defer to your healthcare power of attorney or next of kin. An important exception is that physicians are able to provide emergency medical care without consent if you are unconscious, and they believe that a reasonable person would want treatment (antibiotics, emergent surgery, blood products). They won’t let you die waiting just because they couldn’t find somebody to sign the consent form.
What if you hear them out, and decide you don’t want the therapy? That’s up to you. Since the 1890s, patients have had the legal right to refuse treatment, even if physicians think you’re acting cray. This could be because you don’t agree with the therapy (ex: a Jehovah’s witness not wanting blood transfusion, or someone not wanting to participate in stem cell research), you can’t accept the risks, or just because you don’t feel like it. As long as you can express your understanding of refusing treatment (which may include death), that’s your deal.
Sorry, George Clooney probably won’t be there
The last right I want to talk about is your right to receive medical care in an ER. In 1986, the Emergency Medical Treatment and Active Labor Act (EMTALA) required hospital emergency departments that accept Medicare to provide medical services regardless of someone’s citizenship or ability to pay.
However, this doesn’t mean timely care. I’m currently working in the Emergency Department, and people routinely wait 6-7 hours before they see a provider. Why? Because in our current health insurance climate, people overuse the ER for non-emergent problems because they don’t have regular access to primary care. So if you can go to a primary care provider, you’ll not only save yourself some time, but others as well.
Doctors also have rights. There are not required to provide care that they either think is inappropriate or are ethically opposed to, like abortions or birth control (in the state of Ohio, they are required to refer you to someone else who will). They are also able to “fire” patients, or refuse to continue to give them medical care- this could be for missing too many appointments, not making timely payments, or they just feel that it is not a good match. However, they do have to continue to offer you medical services for enough time to find another doctor (somewhere between 3-12 months).
Physicians and patients have to have a mutually respectful relationship. Make sure to stand up for yourself, and do your part to ensure you are getting quality medical care!