It can feel like a punch in the stomach, or it may take your breath away. If your doctor tells you that you've been diagnosed with a serious illness or condition, that news can be devastating. Plans and priorities change instantly when you're facing a major cancer, serious heart disease or other life-threatening condition. Patients can be overwhelmed with anxiety, fear and sadness. However, after practicing medicine for more than three decades, I've learned there are recommended steps patients can take to best navigate their suddenly challenging situation.
For starters, marshal your energies and resources and don't feel pressured into making hasty decisions, especially about significant, invasive procedures or surgery unless your life is in imminent danger. You likely will have time to digest your diagnosis, become informed and seek other expert medical opinions.
I recommend that you start taking a family member or close friend to your medical appointments — not just for moral support but also so you have an advocate who can ask questions, take notes and help clarify and process the barrage of information you will receive. Some people find it useful to tape-record their meeting with a doctor to discuss diagnosis, options and prognosis.
Researchers at Johns Hopkins found that the 38 percent of Medicare beneficiaries who brought companions with them on routine medical appointments — typically a spouse or adult child — were more satisfied with the care they received. In a study at the University of Colorado Health Sciences Center, physicians concurred, noting that companions improved communication between doctors and patients.
Get the facts
As your situation evolves, you need to become an informed patient, someone who assists with your care by sharing key information about yourself, while also understanding the medical expectations that may benefit you and your care. Your research may take you online. A University of Maryland study found that 70 percent of cancer patients who tapped into health websites felt the information helped them prepare for doctor appointments; 58 percent said it helped them choose a treatment.
Several hospital websites, such as that of my own institution, provide overviews of a large number of illnesses. You also may wish to look at The Mayo Clinic and Johns Hopkins sites. Information also is provided online by the Centers for Disease Control and Prevention, National Institutes of Health and the American Academy of Family Physicians.
Almost every disease and condition, from colitis to leukemia, has its own website that offers more in-depth information, including timely information on research and treatments. Most of these sites provide information on support groups that can be valuable.
But there's plenty of erroneous information online, too. You'll want to avoid not only this misinformation but also con artists, pseudo scientists and outright frauds in cyberspace. Understand that your own moods and sensitivities may run high and low in your difficult situation. But your common sense, for your own protection at this crucial time, can't be vanquished: If a therapy or medical promise sounds too good to be true, it demands verification and skepticism. MedlinePlus, a service of the National Library of Medicine and the National Institutes of Health, offers a 16-minute video tutorial on how to evaluate online health information.
OK to seek other medical views
Once you are informed, compile a list of questions and consider seeking a second opinion. Surprisingly, most people don't do either. According to a 2010 Gallup Poll, 70 percent of Americans do not feel the need to check for a second opinion or do additional research when given a diagnosis.
This is a mistake. For starters, your diagnosis may be inaccurate. Statistics vary as to how often this occurs. Your case may fall into a gray area in medicine as to its care; some conditions are tricky to diagnose.
Take the case of ALS, also known as Lou Gehrig's disease or amyotrophic lateral sclerosis: between 10 percent and 15 percent of patients diagnosed with this debilitating and usually fatal illness turn out to actually have another disease or condition; up to 40 percent of those afflicted with ALS initially are misdiagnosed, says the ALS Association.
In another study, more than half of patients with chronic obstructive pulmonary disease, a progressive respiratory condition, were originally diagnosed with asthma.
Even if your original diagnosis is accurate, a second physician may suggest a different course of care or additional treatment options. And having your diagnosis confirmed enables you to make decisions with greater confidence.
Don't worry that getting a second opinion will offend your physician. Some insurance companies require it before covering treatment. In California, insurance providers by law must pay for a second consultation. HMOs also must approve coverage for a second opinion in "expedient" fashion, in general, within 72 hours of your request.
When seeking a second opinion, look for a clinician with a different background than yours and who preferably isn't affiliated with the same hospital or practice. You can get referrals from a trusted physician, friend or your health care provider, or by contacting your local medical association. Look closely to see the medical caregivers' academic and professional credentials, board certification status, specialty training and affiliations and information you can find on their clinical outcomes. You want to seek out the best and the brightest expert with the most experience in treating your particular ailment.
Before your appointment, ask your physician to send over all tests and imaging studies or make a copy of the records for yourself so you don't have to pay to have them repeated. Your doctors are legally obligated to provide you with these records, although they may charge a fee to make copies. Don't subject yourself to needless over-testing or excessive examinations. Don't forget to bring your trusted companion with you, and be sure to ask about the risks and benefits of all treatment options, including delaying a therapy.
Several institutions, including Johns Hopkins, Partners Healthcare and the Cleveland Clinic, offer online consultations to distant patients, especially those seeking highly specialized care. Patients in these situations may send key diagnostic records by fax, mail or the Internet for review and advisement.
If the second doctor disagrees with your original diagnosis, you may consider a third opinion. Be realistic, however: If, on balance, clinicians are offering the same view of your condition and care, it may not be prudent to delay therapeutic measures while you seek yet other opinions.
Deciding who to tell
Even as you wrestle with and then decide on your medical course, you'll face sensitive issues over who you will share information with about your illness and care. Experts agree that parents must be honest with their children, offering accurate but age-appropriate information. Kids are intuitive. If you don't tell them what's going on with you, they may imagine something far worse, blame themselves or fret that they will get sick, too. Kids take their cues from you, so try to be calm and reassuring. Keeping their lives as routine as possible will also help them feel secure.
When it comes to your employer, only you can decide what's best. But know your rights. The Americans with Disabilities Act guarantees that you can't be terminated for illness if you can do your job with reasonable accommodation. Under the Family and Medical Leave Act, you are entitled to 12 weeks of unpaid leave due to a health condition, without disclosing your specific diagnosis. You are guaranteed an equivalent, though not necessarily the exact position, upon your return. To qualify, you must have worked for a company with 50 or more employees for at least a year, clocking at least 1,250 hours of work.
It's crucial too, that others know your wishes. It's best to tackle this task when you're healthy and feeling well. It's all the more crucial if you're confronting serious illness. As I've written in this blog before, everyone needs to prepare an advance health care directive that describes the limits they want placed on treatments at the end of life. There are other health care planning documents you should consider, discuss with your family and medical caregivers and put in place.
I've already warned you about bogus material and hucksters online. I also caution you against getting sucked in by unproven, alternative treatments that sound too good to be true. They are. Massage therapy, acupuncture, or aromatherapy may be used along with traditional medical treatment to help alleviate symptoms. But don't forgo medically recommended treatment to chase a figment of false hope. My colleagues and I can only look on in sorrow when seriously ill patients reject widely accepted, standard care and expend their precious time and family resources when deceived into undergoing quack nostrums. Your courage and resolve will be a boon to your care; belief can be sustaining. Skepticism and reality also can't leave your bedside.
Coping with a serious diagnosis is a major challenge. But know that you aren't alone.
If you need inspiration and feel as if your own struggles mean more if they contribute to the collective good, I've written recently about how informed patients can advance medical science by participating in clinical trials, which also may offer them experimental therapies that eventually may become a new standard of care. My colleague Keith Black, MD, a neurosurgeon who treats people who travel from around the globe to see him for care of some of the most aggressive brain tumors, points out that his patients teach him some profound lessons about life as he describes in this video clip.
Finally, I must also underscore for you that countless Americans triumph over significant health issues every year. With continued medical advances, the prognosis for so many has never been better. Take cancer, for example. Thirty years ago, my colleague Robert Figlin, MD, director of division of hematology and oncology, recalls that he routinely warned patients that their outcomes weren't optimal. By contrast, "when a person comes to see me today," he says, "my conversation contains hope and the goal of curing, controlling and allowing people to live full and productive lives."
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