Detail from the cover of You: The Smart Patient.
from Chapter 8
JUST WHAT GIVES YOU THE RIGHT?
You Have Rights, You Know. Here's How to Use Them
Detectives who've had a run-in with their neighborhood hospital may have noticed one way that suspected criminals are treated better than patients: you can't get thrown in the pokey without learning your rights. Yet you can spend days or weeks in a hospital without anyone talking to you clearly about your basic guaranteed entitlements and privileges. Sure, these things are mentioned in various places in the armload of forms you're given when you're admitted, but are you in the right state of mind to read them when you've just been admitted to the hospital? Most of us just skim these papers, at best. That's not good; if there's ever a time when you really need all the protection that you're entitled to, it's when you're embroiled in the thick of the medical system.
Many of us don't ask about our patient rights when we're undergoing medical care because we probably assume that ensuring our rights is someone else's job. Also, many of us enjoy so many rights in the U.S.A., we often don't appreciate them until something unusual happens (like spending an afternoon trying to ring the American consulate from a Mexican jail — long story).
Seriously, if you tried to tally all of the legally enforceable rights you possess at this very moment, it would probably take you three days. Aside from being inalienably entitled to speak your mind, purchase weaponry, and be tried by your peers on matters concerning sums greater than $20, you enjoy a long list of government-sanctioned rights with nearly every little thing you do. This include buying shoes on your credit card, hopping a cab in Vegas, and — one that's close to our hearts — calling your doctor with a question about your laboratory test results or your upcoming surgery.
Yes, there's a Patient's Bill of Rights. It was created by the American Hospital Association in 1973 and revised in 1992 (see "In Civics and in Health" on the opposite page). The Joint Commission has a long laundry list of your patient rights that it requires its accredited hospitals to honor. Other health care associations have chimed in with their own lists in the years since, as have many individual hospitals. The gist is pretty straightforward: you are guaranteed speedy care, full disclosure of costs, confidentiality, and a bevy of other civilized basic rights, many of which you also enjoy when buying a new muffler for your car. If you wouldn't be intimidated to ask about your warranty on the muffler, you shouldn't be embarrassed to ask about the warranty on your knee replacement or your new heart valve.
Taking the tips we've given you in the previous chapters will ensure that you wring the greatest benefits from your patient rights. Many are simply guaranteeing your prerogative to do (or not do) the things we've recommended. However, there are a few extremely important rights that don't fall into this category, and it's up to you to take advantage of them. We'll give these rights special attention in this chapter.
In Civics and in Health
The Advisory Commission on Consumer Protection and Quality in the Health Care Industry (we're assuming this is one of the shorter names suggested when President Clinton appointed the group in 1997) created a "Consumer Bill of Rights and Responsibilities." The Joint Commission also en- sures that health care organizations respect your rights when providing care, treatment, or services to you or your family. Here are just a few of the basic entitlements you enjoy as a patient in our fair land:
As a patient, you have the right to considerate, respectful care. You aren't obligated to be considerate and respectful to those who are caring for you, but it would be nice.
You have the right to obtain current, understandable, relevant information about your diagnosis, treatment, and prognosis from health care providers. Rather than waiting for it to be handed to you, though, we'd suggest exercising your right to seek it out on your own, if you want to add objective and complete to the adjectives above.
If you speak another language, have a disability, or don't understand something, you have the right to have it explained to you so you do understand it. This doesn't mean that doctors have to give you the answer that'll make you happy, however.
You have the right to immediate emergency screening and stabilization when you're in severe pain or have been injured. Of course, immediate could mean sixteen hours if the ER is really backed up that night.
Except in emergencies where you must be treated right away, you have the right to discuss your treatment options, the benefits and risks involved, the length of recuperation, and medical alternatives before making a decision about your care. You even have the right to discuss this with so many doctors, consultants, and alternative-medicine practitioners that you might never get around to making any decisions.
You have the right to know the identity of the people involved in caring for you as well as their experience, such as if they're new residents or students. You can attempt to flirt with them as well, but it may not get you better treatment.
You have the right to know the estimated costs of all treatments. You also have the right to be given ice water and a cold compress after fainting upon learning the estimated costs.
You have the right to make decisions about the care you'll receive and to refuse certain treatments to the extent permitted by law. In the best situation, you won't have angry relatives trying to have you declared insane.
You have the right to expect that your medical information will be kept confidential, except in cases where reporting it is required by law. For an example of the latter, if you have the Ebola virus, we have to report it. But you won't have too long to be upset anyway.
You have the right to have an advance directive such as a living will, durable power of attorney for health care, or health care proxy. This is one of the main reasons we wrote this chapter, in fact. (Don't get confused by all the terms; an advance health care directive is a document used in some states that combines a living will and health care power of attorney.)
You have the right to review your medical records and have the information in them explained to you. You may also express consternation if your medicals are presented to you in seven large supermarket paper bags, and you're given a pitchfork to sort through them.
In a hospital setting, you have the right to receive medical care within a reasonable time. Reasonable is a much longer span of time than immediate, and immediate is subject to the interpretation explained in a previous right.
You have the right to agree or refuse to participate in research studies and to have them fully explained to you before you jump in. This doesn't guarantee that a treatment will be named after you, however.
Is This on the Record?
Some of the most significant (and controversial) rights you enjoy as a patient concern the information included in your medical records. Even if you're not a celebrity, your overall health record — if assembled in one place — would likely be fatter than the congressional taxcode book. It's stuffed full of reports, microfilms, and other media with a similar topic: you. Each time you visit a physician or enter the hospital, more information goes into that file. Eventually all the info will be stored on computer CDs, but eventually could take a long time.
You're probably just envisioning laboratory test results, physician notes, maybe copies of bills, and the like. But your medical record contains much more than that — much more — and this is why it can be tapped by your insurance company or another organization in case of a lawsuit or other legal issue. You might think of it as a credit report for your body. (Let's hope it's one that would clear you to qualify for at least a fifteen-year mortgage.) What's in that file? Among many other things, you'll find:
Consent forms. You've signed dozens of these in your life; perhaps hundreds, if you want to count elementary-school field trips. Naturally, you'll have to sign one before undergoing any surgery or medical procedure. These often have little value, since most folks would not bother coming to the hospital for a procedure that they don't want if they were conscious when they came, that is), but the devil is in the details. So pay attention to those details and read the consent form carefully to make sure that your name is spelled correctly, the described procedure and site of your surgery are correct, and the like.
Consultations. These are usually a fancy name for second opinions, which we discussed in chapter 7. Any reports made by doctors other than your primary physician (such as a specialist) get thrown into the consultation category.
Discharge summary. If you've been hospitalized, your records will include everything noted about your stay, including your diagnosis, test results, and procedures and their results, as well as your condition when you left the hospital. Doctors sometimes use poetic license to cram a two-week hospital stay into one paragraph, so a Smart Patient will read the discharge summaries (or ask someone to translate all the gobbledygook) before it's tossed into his health file for posterity. If that condensing caused some important events from your hospital stay to be missed, you have a right to correct that.
Medical history and physical information. This is all the basic stuff that you neatly consolidated for Your Health Journal in chapter 1, such as any illnesses and surgeries you've had, any current medical conditions and medications you're taking, your family history, and so forth. This part of your file will also include your doctor's notes from appointments, which might make for entertaining reading. Doctors aren't supposed to gossip in these sacred notes, but things tend to fly out of our pens during examinations. You can take a trip down memory lane and revisit any or all of your illnesses and maladies by going through these notes, if that kind of thing turns you on.
Immunization history and record. These records will show which shots you received and when, which will save you time and trouble if you step on a rusty nail and need to quickly find out if your tetanus protection is up-to-date. When you book that dream vacation to Mozambique, you'll be able to see how many needlesticks you need to increase the odds that you'll return as happy as when you left.
Pathology reports. If you had tissue removed and analyzed during surgery, the analysis of the tissue (was it cancer or not?) will be here, written up in all of its undecipherable subcutaneous glory. Hopefully all these analyses will correspond to specimens that you wanted removed.
Physician's orders. These are the specific directions your doctors gave you after specific appointments and procedures. Don't worry, the file won't say whether you followed the orders — unless that was all too obvious to your doctor during a subsequent visit.
X-rays and imaging reports. While X-rays, mammograms, and ultrasound films and visual records are usually kept in the radiology department or on a computer, your medical record will usually include the written findings describing those images. More recently, however, digital images are being stored on computer disks and in your doctor's or hospital's computer system, so accessing them (with your permission) is easy for second-opinion docs and others.
Now, in the ideal situation, all of this information will be in your medical record, neatly tabulated and logged, legible, and current. The odds of that being the case, of course, rival the odds that you'll have your own CBS sitcom next year. Health workers called health information management professionals are responsible for keeping your records complete and accurate, but that's an extremely difficult task, given how mobile most people are. Your medical record is likely scattered among several different physicians and a few different hospitals, if you're like most patients. However, like your credit report, the medical record maintained for you by your last few health care providers or insurance companies you've dealt with probably contains a large chunk of comprehensive info, even if it's not a perfect and complete dossier. The increasing use of computerized records is one reason for this.
What does this have to do with your patient rights?
Most of us are concerned about having someone peek into our private lives for unscrupulous purposes, whether it's an employer, a life-insurance firm, or our future in-laws. Obviously, whoever has access to your health record — with or without your permission — can learn more about you than you probably remember about yourself.
From YOU: THE SMART PATIENT by Michael F. Roizen, M.D., and Mehmet C. Oz, M.D. Copyright (c) 2006 by Michael F. Roizen, M.D., and Oz Works LLC, f/s/o Mehmet C. Oz, M.D., and Joint Commission Resources. Reprinted by permission of Free Press, a Division of Simon & Schuster, Inc., NY.