Do you know off the top of your head the dosage of all the medications you take? Whether your paternal grandfather had liver disease? What year you got that immunization as a baby? If someone found you unconscious would they be able to find out whether you have a medical condition? The following sections will identify the provisions you’ll need when you enter the world of modern medicine—from a dossier of your medical records, to a family tree, to medical identifiers listed in your phone.
Invest in a notebook dedicated just to being a patient. You can use it to take notes during appointments, write down questions you’d like to ask your provider as you think of them, and draw out a family tree complete with medical history. It also comes in handy in hospital settings, when you need to keep track of the chaos (see here on how to use it there). Whether you take pen to paper or prefer the smartphone equivalent, create a centralized place for jotting down and storing important information. Including or linking to a calendar is a great idea as well!
I also recommend that patients and their friends keep a directory of names and contact information for all their providers, their pharmacy location and phone number, their advocate contact information, and clinics they go to for any specialty care. In this sense, your healthbook can function as a Rolodex as well.
No single person presides over your medical information. Providers access it when necessary and maintain its security, but no one ensures that it’s used to its fullest potential. But from now on, you are going to do this.
The backbone of this provisions list is a copy of your medical records—something many patients don’t possess, and don’t know they can request. This dossier should grow with you over time, and it’s enormously helpful to have it accessible.
Presiding over this information ensures that your care is coordinated and based off a central source of complete, up-to-date information. It allows your full medical history to follow you to every specialist appointment. It prevents duplicate testing. It often holds clues to diagnoses that can only be discovered in context—context providers often don’t have the time to go digging for on their own.
Having a compilation of your medical records and familiarizing yourself with its contents increases your chances of accurate diagnosis and helps prevent medical error. When you’re privy to the same information as your providers, you can better advocate for yourself. There are times the simple act of carrying the information with you into an appointment and being sure parts of it are read, knowing that you and your provider have your eyes on the same information and can process it together, can change the outcome. Ultimately, the record is your best assurance that both you and your team are getting a whole and accurate story.
Acquiring this will also make your life easier. You won’t need to call the clinic, explain why you need the information you do, and get shuffled through an automated system for every quick bit of information. When was that last vaccine? Did I end up getting that screening done, and what year was it? When did those symptoms start? Did the hospital actually spend four hours on the surgery I’m about to pay my insurance for?
More protected and less accessible than their paper ancestors, modern medical records can be a challenge to obtain. Individual patient records used to live in weathered manila file folders. Requesting a fax or a copy was a fairly uncomplicated exchange: ask, xerox, done. With the shift to electronic medical records, though, your history, test results, and hospitalization information live in the cloud. While they may have changed in form, the system that presides over their use has not. The Health Insurance Portability and Accountability Act (HIPAA) created a padlocked system, built to cloister and safeguard sensitive and personal details and keep them out of the wrong hands. This is, of course, very important. There is a reason HIPAA rules the medical world. But because of it, no one encourages shuffling around medical files. Your records are available to you only if you ask. But they’re your records—obtaining them is a federal right that trumps state variations or office policies regarding the request process. It still might be a royal pain to collect them, though, so treat yourself to something nice once you’ve succeeded.
Below, you’ll find a guide to obtaining and compiling your records that should help you trounce any stumbling blocks or professional mules that hassle you along the way.
Collecting your medical records
If you go to a large hospital or clinic, call the operator and ask to be connected with the health information management (HIM) department. If you work with a smaller office, call and explain that you’d like to access your records and ask to be directed to the right person.
Once connected, ask to sign a patient access request form or similarly titled document. On the form, you’ll indicate which portion of your records you’re requesting. Check all the boxes if you’re starting from scratch. This may raise a few brows, as the documents can be a hundred-plus pages, but that’s okay. You can typically sign this form online and return it via email.
THINGS TO KEEP IN MIND:
You will have to prove you are indeed yourself, either via photo identification upon pickup or with your social security number.
HIPAA does not allow the release of very specific portions of medical information—such as psychotherapy notes.
Decide what format you’d like to receive the file in. You can typically choose between CD, flash drive, and secure email. Talk with the HIM or record coordinator about your options when you call.
There may be a fee associated with the labor for obtaining the records. If you request the information electronically, the cost is legally bound to be $6.50 or less, so do not overpay. Federal regulations are actually working to make these records more accessible to patients and to reduce their cost, so as time goes on, you will be more likely to find that there’s no fee.
Medical organizations can take up to thirty days to fulfill the request and deliver your records, but usually it won’t take this long. I’d estimate ten days or so.
You’ll need to repeat these steps for each clinic or hospital you’ve been seen at. It’s an arduous process, but it could be rather sweet to call your old pediatrician’s office to say hello and tell them about all you’ve accomplished since kindergarten!
Did your uncle eat fried chicken and drink sweet tea and still live to be ninety-seven?
What was the type of breast cancer your mother’s sister had? Was it pre- or postmenopausal? Was she tested to see if it was hereditary?
Family trees may sound like the stuff of grade-school show-and-tell, but you should create one and file it with other important health documents. It’s a useful tool to determine what types of screenings you should have done, at what age, and with what frequency. It also tunes your provider in to your personal risk profile so you can tailor prevention plans (where possible) for inheritable and preventable conditions, like diabetes or heart disease. With a solid, complete family health history to refer to, rather than facts tossed out at random during appointments, your provider can better help you determine a plan.
If anyone in your family has had one of these, be sure to tell your provider up front, in the early days of your routine care:
Breast, ovarian, or uterine cancer
Colon, pancreatic, or prostate cancer
Thyroid disorder
Heart disease
Type 2 diabetes
Stroke
Melanoma
Osteoporosis
HOW TO CREATE A FAMILY HISTORY TREE
You can create your own chart (ideally in your healthbook) and share it with your provider, or you can enter the information into the surgeon general’s My Family Health Portrait tool (http://familyhistory.hhs.gov).
Begin by writing down the names of all your blood relatives, beginning with parents, siblings, and children, then moving on to grandparents, aunts, uncles, nieces, nephews, and half siblings. Ask family members about any chronic diseases and conditions they have had (such as heart disease, diabetes, stroke, high blood pressure, cancer, asthma, dementia, and multiple sclerosis) and at what age they were diagnosed. Find out the age and cause of death for any relatives no longer around.
Also consider your family’s heritage and ancestry. Were they Vikings? Ashkenazi Jews? Refugees whose origins are unknown? If you don’t know, that’s important to note too.
At each turn, seek nuance and detail. If you’re able, find out specifics about the manifestation of any disease and its progress. Did it respond to treatment? Did the family member attempt lifestyle changes (in the case of diabetes or heart disease)? Did cancer recur or go into remission? Find out the exact diagnosis, if possible—for example, oat-cell carcinoma, as opposed to the more general lung cancer; ductal carcinoma, as opposed to breast cancer. Was dementia vascular? Lewy body? Not all types are Alzheimer’s. Providers don’t expect the majority of patients to go to this length to collect detail, but the information will result in more precise care.
I am not a proponent of screens standing between people. Talking to a healthcare provider these days can resemble checking in for a flight! But I’ve met my waterloo with this one—technology isn’t going anywhere. (I also think of those days I went to work with my mom as a little girl, playing in a library of medical charts flagged with colored tabs and alphabetized by last name, and it seems prehistoric.) Even I can admire the benefits of the massive overhaul of paper medical records.
Two of these benefits that can help you as a patient are Care Everywhere and MyChart.*
Care Everywhere is a feature of electronic medical records that swiftly and securely exchanges medical information between healthcare professionals. Your chart once had to be requested, thumbed through, signed off on, and faxed, but providers can now access it simply by clicking “outside record” and querying for the information they need, getting it in a matter of seconds.
This is lovely, because it means that rather than being tied to a place, medical information is tied to a patient moving through the world. You don’t have to stress as much about exact dates and places, or results you can’t recall; you can simply ask your provider to look them up. Having this information at their fingertips helps both providers and patients. And if your security alarm is going off, just remember that only the healthcare professionals directly working with you during the visit have access to the information. Care Everywhere does not replace the need to have your own copy of your medical records (see “Create a Medical Dossier”), as the full record grants shared access to broad strokes of information like patterns, family history, and chronology, but Care Everywhere can get quick answers on the exact date of a procedure or result of a test in real time.
You’re more likely to have heard of MyChart, as you’ve probably been encouraged to sign up for this online portal. It has an online dashboard allowing you to communicate with your provider, request appointments, refill prescriptions, and access portions of your medical records. Though I’m a bit more skeptical about this one—it can feel like yet another way to economize on healthcare delivery and minimize the need for human interaction—there are definite benefits, and I recommend signing up. Outside of the main tools and features available, here are some less obvious ways to use the portal to your advantage:
Loop in your advocate (see the section “Choosing an Advocate”). MyChart offers a way to give another person access to the details they need to best support you. Using the proxy access form (which can be downloaded from MyChart or requested from clinic staff), you can designate another adult or adults you’d like to have access to your account. This will allow them to bypass bureaucratic formalities when they are trying to get information about your condition. People to consider granting access to include:
Spouses or partners
Children (especially as you age)
Parents
Friends
Your health advocate
Ask your provider questions. If you have a specific, nonemergency question or request—one that does not require a conversation but simply a yes-or-no answer—you can use MyChart to message your provider. Expect to hear back in one to three days.
Prepare for appointments. If you have an appointment coming up, you can use MyChart to message your provider and brief them on why you’re coming in. Don’t be long-winded, but relay the general points to prep for the conversation and ensure that you will talk about everything you wanted. It’s a useful way to maximize your face-to-face time. You can also use the feature if you have an appointment coming up to discuss a specific test result: check-in ahead and make sure it’s been received before you trek to the office!
Your Smartphone as a Medical Device
The advent of smartphones has affected most facets of the healthcare system—for patients as well as clinicians. Voice memos replaced Dictaphones, the Internet now houses extensive libraries of medical literature, pharmacies send text alerts about prescription refills, and apps allow patients to do everything from accessing their records to cataloging their medications to finding the best specialists in their vicinity.
Your phone itself contains a number of simple features—ones you’re already familiar with—that you can use both in and out of appointments to make you a safer, more informed patient. These include health app, photos, voice recordings, and notes.
To make your important health information accessible in the event of an emergency, set up your Medical ID in the Health app on your iPhone or with the built-in Android feature. Stop now (yes, literally, now!), pull out your phone, and take a few moments to set it up. In a mad rush to put you back together in an emergency, responders and medical teams have to quickly determine your identity, medical history, allergies, medications, and emergency contact. The Medical ID—which can be accessed without unlocking your phone—can save them valuable time.
There are countless types, brands, and styles of medical devices. You should have full information on hand about the ones you use so you can answer any questions about them that come up at an appointment, with a pharmacist, or in a hospital setting. I recommend taking photos of your medical equipment that you can easily access at appointments. That way, you can verify that you and the nurse, provider, or physical therapist are talking about the same thing. Instead of trying to describe an obscure piece of equipment that your previous specialist had you using, you’ve got the real thing in front of your and the provider’s eyes. On many occasions I’ve had patients arrive on the hospital unit, with their partners scrambling around trying to find the patient’s inhaler, brace, or CPAP nozzle. It’s easy to replace these in hospitals, but it helps if we know exactly what make and model we’re dealing with instead of a description of a thingamabob.
The antidote to confusion can be as simple as a few shots on your phone, stored in an accessible folder. Snap images of any equipment you use, and be sure the brand is visible. Here are a few examples of devices you should get pictures of:
Insulin pumps
Inhalers
Nebulizers
CPAP equipment
Braces (the kind for your limbs, not your teeth!)
Glucometers
Blood pressure monitors
Mobility devices (walkers, wheelchairs)
Infusion pumps
This small act of preparation easily eliminates a significant source of miscommunication between patients and providers.
As for the voice memo feature, it never hurts to record an appointment or a discussion in order to go over what was said if you can’t remember or want to do more research. It’s a courteous (mandatory, really) practice to ask someone if it’s all right to record them before you commence. Just explain your purpose is for your own understanding and health literacy. Providers know it’s often a lot to take in, so the request should be welcome.
Genetic Testing: Is It Worth It?
Home genetic testing falls somewhere above tarot cards and below pregnancy tests in terms of its usefulness and validity, and it is a source of confusion for many patients. To have access to information that can illuminate risk or potentially nip a fatal disease in the bud has obvious appeal. Many of us, myself included, are asking if it’s worth it.
Of course, some tests are indeed warranted and provide meaningful information. These include, but are not limited to, the tests for Huntington’s (when it runs in the family), the BRCA1 and BRCA2 genes (which are closely linked to hereditary breast cancers), and possibly neurotransmitter synthesis like the cyp450 test (which affects antidepressant therapy—see here). These are primarily done under the supervision of a medical provider. The rest of this section discusses other forms of genetic home testing.
Bioinformatics is a burgeoning field, a seventh wonder in the world of medicine—but also one with a nefarious past steeped in eugenics. Today it’s the new darling of the start-up industry, with companies touting lifestyle DNA analyses that sound like headlines from the Onion: find out your cellular age, your preferences in wine, your future child’s athletic abilities.
If you feel like home genetic testing promises more than it could possibly deliver, you’re correct. If you get your hands on an at-home genetic testing kit, you’ll see that the companies who make them are also self-conscious of this fact, their fine print rife with disclaimers. Nevertheless, companies like 23andMe and Helix (dubbed the Apple of bioinformatics) are carving out a multibillion-dollar industry. A branch of their products offers patients a hands-on way to assess their risk for certain diseases and adjust their habits accordingly. All they have to do is spit in a vial or draw a drop of blood from their index finger and mail it out to a lab.
But the results of these tests are predominantly inconclusive. Much of the time, in exchange for their saliva patients receive results that read “VUS”: “variant of unknown/uncertain significance.” Our DNA is rife with variation because our cells divide close to two trillion times a day, and every division is an opportunity for mutation. And even if your results show a mutation linked to breast cancer, or Alzheimer’s, or ALS (Lou Gehrig’s disease), it’s only a matter of probability whether the mutation will indeed end up expressing itself as disease. It’s like a tornado warning—the necessary conditions may be present, but no one can say for sure whether the tornado will hit your home, your neighbor’s, or nobody’s at all.
Another problem with home genetic tests is that there aren’t many viable outlets in clinical care to handle the powerful information (of questionable validity) the tests reveal. As more and more tests slip into our line of sight, we become more convinced that we need them, not realizing that the results may confuse, falsely reassure, or instill in us unfounded panic. This panic then lands back on the medical system, as genetic-testing companies slyly assume a “not it” position when it comes to interpreting results beyond the molecular level. Troubling results come with an asterisk that directs you to go see your general practitioner to discuss further—and the company makes it someone else’s problem.
When genetic tests yield a conclusive result about disease risk, they advise having the test repeated at your clinic or hospital with your primary care provider. But if you show up at an appointment with your results in hand, your provider may respond with skepticism or befuddlement. It can be difficult for clinicians to interpret findings in a meaningful way or come up with an actionable plan. It’s also unlikely that insurance will cover a series of tests set in motion by a self-ordered testing kit, and tests are much more expensive inside the medical system, where protocol differs. Ultimately, there’s not yet recourse or functional avenues for home genetic testing in the medical system. And without a way to act on or contextualize this information, I doubt it’s worthwhile.
If you do go ahead with testing, what do you do with genetic information once you have it? Aside from trying to make sense of your genome and any risks you may have uncovered, you’ll need another source of help that outsourced testing universally lacks—counseling. Making sense of test results and navigating the decisions that follow can be agonizing if a grave disease is on the table. Clinics and hospitals have departments devoted to coaching patients and providers through this process, from deciding whether to have testing in the first place, to assessing results, to deciding what precautions are necessary.
And here is where I reiterate the importance of your PCP. Why not begin this process with a provider you trust at the helm, and an advisory board of genetic specialists? Rather than opening a Pandora’s box of information, any possible strand of which could perplex you rather than inform or protect you, tailor a plan based on your individual risk profile with the help of a medical professional you know well.
I say skip the mail-order tests and use the money on a year of massages.
If you head for the Internet to substantiate your dread or grant peace of mind whenever you have a strange rash or something in the toilet looks unrecognizable, you’re like most modern patients.
About 1 percent of all Google searches are related to medical symptoms. Google’s platform for generating results for these queries isn’t perfect, but they’ve started to refine it, working with Harvard Medical School and the Mayo Clinic to improve search results. For now, though, the Internet is best used when you need simple medical information urgently. Things like, What temperature indicates that a newborn needs to go to the ER? Or, What are the signs and symptoms of a stroke?
To use the Internet to your advantage for more complex medical questions, pay attention to the quality of sources you’re clicking on. I recommend circumventing the whole Google affair here, because with it you’re likely to be ambushed with ads and waylaid by information of dubious quality.
Instead, start with the US National Library of Medicine (http://nlm.nih.gov). The home page has several helpful branches for patients, but for your purposes MedlinePlus is the first one to click on. MedlinePlus takes research from the National Library of Medicine and distills it into information accessible on a broad range of educational levels. PubMed, a database of medical information updated in real time around the world, is the next step up. Nearly all research published in peer-reviewed health journals can be found via this database, and the bulk is accessible to the public free of charge. These articles can be daunting, so go for the abstract (a condensed paragraph that summarizes the article) or skip straight to the conclusion to find what you need.
If you do stick with Google because it’s what you know and prefer, make sure the sites you end up on have a date. If the site is not from the current year, the information is likely outdated. Also check whether the author is identifiable and whether the site is sponsored by ads—particularly for medications or drug companies.
Last, monitor your state of mind when you search your symptoms. Don’t do it when you’re panicked or desperate, or have low blood sugar. Your frame of mind will shape the information you find and how you proceed with it. What’s your endgame? Try to decide beforehand whether you want to entrust the matter to yourself and the World Wide Web, or whether you plan to see a provider anyway. If you move forward with your search, watch out for confirmation bias. If you sit down to your computer thinking, “I have skin cancer,” do not type in “DO I HAVE SKIN CANCER?” because you’re priming the Internet to tell you, yes, you do indeed! Instead, enter in specifics about the mole or rash, use PubMed, or go to the Skin Cancer Foundation site and read about manifestations of and risk factors for skin cancer from a more objective, holistic vantage point.
Stay on Nodding Terms with Reality
We live in a frenetic world where it’s easy to slip into a trance of exceptionalism and think, It won’t happen to me.
The reverse side, of course, is understanding that the world is unpredictable and life is absurd, that our bodies function independently from our wishes and often assert their alliance to randomness alone. This mind-set is more realistic, but it, too, can reinforce a belief that there’s no use in planning for health unknowns—considering them as inevitable as they are unpredictable. It invites us to take a back seat and entrust the decisions to others if and when there’s a serious medical occasion.
But it takes only a tiny bit of planning to ensure that if an overwhelming medical situation transpires, you don’t just move along a conveyor belt at the whim of strangers’ decision-making. The following sections will show you how to face tasks that will trigger dread before they impart peace. But in planning for the unexpected, you can enjoy the calm that comes with knowing that should a medical emergency happen, you and those around you are prepared with a blueprint.
When it comes to trauma, not all hospitals and emergency rooms are created equal. Trauma centers are designated by local municipalities and verified by the American College of Surgeons based on indicators like resources, policies, readiness, and patient-care outcomes.
A Level I trauma center is a comprehensive care facility capable of treating every aspect of traumatic injury in an emergency. These have the best equipment, treatment modalities, and expertise, and in a crisis they’re the ERs you want to end up in. On the other end of the spectrum are Level V trauma centers, which are capable of providing initial evaluation, making diagnoses, and prepping patients to be transferred to higher levels of care. They are not where you want to show up after a major accident.
This ranking system allows emergency responders to divert patients according to severity and type of trauma, but it’s also useful to keep track yourself. Hospitals, especially private ones, market their certifications, but you can also go to the American Trauma Society website (http://www.amtrauma.org) and search for trauma centers by proximity to your home or work. Similarly, the Joint Commission designates stroke centers and comprehensive cardiac centers based on their ability to swiftly and expertly manage urgent manifestations of these conditions. These centers are where to go first in the event of a stroke or heart attack.
To cover your bases, locate the places you would go in your town or city for different emergencies, and keep a list of them accessible somewhere in the kitchen.
In nursing school we had one afternoon-long lecture on advance directives, a topic that sounded so dry most skipped class that day. My friend Lilly and I sat in the back row for what turned out to be a stirring talk on the scenarios we choose not to think about, and the realities that befall both patients and medical professionals when people neglect to plan for them. By the end of the class, we’d agreed to be each other’s medical decision makers, or surrogates, in the event of a medical crisis. I think I made her swear, among other things, to get my dog, and I promised her I’d never let them send the hospice harpist into her room. Lilly is loyal, sharp, and reliably capable in a crisis. She has big brown eyes and can look anything in the face without flinching—I knew there was no one I’d rather advocate for me if I couldn’t do it myself.
When we fail to plan for misfortune, namely medical misfortune, we place gravely personal decisions in the hands of a stranger or, worse, a partner, sibling, or friend already in considerable distress.
There are three separate documents you need to know about to ensure these decisions aren’t reactive but are rather a reflection of your preferences and wishes: the living will, the healthcare power of attorney, and the POLST.
The living will is a legal document that lays out what interventions you would want if you were unable to make your own medical decisions, and where you would draw the proverbial line. It asks, for example, whether you would want the following:
Artificial breathing via machine
Artificial nutrition via feeding tube
Treatment that might hasten decline but keep you comfortable
The document can be drawn up with the guidance of a lawyer (the cost is typically $1,000–$2,000), but you can find free templates online and in most local clinics and hospitals. (These must be notarized to be legally binding. Notaries typically charge $5–$10.) If you already have a relationship with a lawyer or you have complex health issues, work with a professional to draft this will. If you don’t fall into these categories, it’s perfectly sufficient to go the more economical route. The types of living wills that hold up in court vary from state to state, so if you split the year between New York and Florida, draft two.
Keep in mind as you make your decisions that refusing aggressive treatment, such as artificial life support, does not translate to refusing care to keep you comfortable, such as pain medication.
In this document, you’ll appoint someone who will make complex medical decisions for you in an unanticipated emergency—for instance, to move forward with a high-risk procedure or persist with life-sustaining treatment for a given period of time. This individual should be someone you trust, and someone with moral courage. (For some, it’s easier to designate a non–family member.) While this document stands on its own and cannot be looped into a living will, it’s best to create and adapt them in tandem.
The POLST (the name varies from state to state, but generally means “physician orders for life-sustaining treatment”) is a free medical document that should be signed with a provider. This is for adults who face a terminal diagnosis, or who are elderly and frail. In its most basic form, it is the standard of care when, for instance, a heart stops, for clinicians to do everything possible to save a life. This sounds good on paper, but the reality can be harsh: Picture, for instance, a frail elderly woman with terminal cancer who goes into cardiac arrest and receives CPR by the responders. Unlike in the movies, real CPR can mean broken ribs, a cracked sternum, collapsed lungs, and an electric shock to the heart. She might suffer significantly from these complications, even if they do keep her heart beating. The POLST form allows her to decide on the level of intervention she wants and the risks she’ll accept.
The most important things to remember about the above forms are:
They work together and do not replace each other.
They are not set in stone and can be altered at any time.
You should share them with family and close friends.
You should have copies of each on file with your primary care doctor.
Rebecca Solnit writes, “Afraid of the darkness of the unknown, the spaces in which we see only dimly, we often choose the darkness of closed eyes.” It’s instinctive to close our eyes and avert our attention when it comes to imagining the worst. In spite of this, channel your guts. Gather your friends, get out the good whiskey, and make a party of it. Go around the Thanksgiving table and ask family members if they’ve done it. Be a model for your neighbors and coworkers. You might find that rather than being an unhappy task, it opens doors to enriching conversations with the people who make up your life.