Finding Dr. Right for a Serious Diagnosis

By JANE E. BRODY
When you get a diagnosis of a life-threatening illness, you want to find the doctors and hospitals that can provide the best possible care. Not only do you want the right treatment, provided by a medical expert in whom you can feel confident. You should also want a doctor who treats you with respect, listens to your questions and concerns, and responds to them in an appropriate and timely manner.
This is not a new idea. Jessie Gruman, author of the new book “AfterShock: What to Do When the Doctor Gives You — or Someone You Love — a Devastating Diagnosis,” starts out her chapter on finding the right doctors and hospitals with a quote from the first-century physician Scribonius Largus:
“No man should entrust himself and his family to any doctor whom he has not carefully judged. Certainly he would never consider allowing any untested artist to paint his portrait.”
Do you ask friends and neighbors or your family physician for a recommendation? Do you check out doctors’ résumés and hospital services online? And after choosing a doctor, do you seek a second opinion?
Know Your Doctor
Dr. Gruman, a social psychologist and president of the Center for the Advancement of Health, cites four important reasons for gathering information about the doctor who will treat you:
¶You’ll want a specialist who is up to date on your disease. The speed with which medical knowledge is advancing makes it difficult even for specialists to keep up with treatment innovations, prompting many doctors to focus on only one disease, even one kind of cancer.
¶Health care in the United States is not as good as most people think. Recent studies have shown that “about half the time, doctors fail to conduct and order tests, prescribe drugs and otherwise deliver care that has been shown to be effective,” Dr. Gruman writes. The doctor you choose should be thorough and pay careful attention to details.
¶You should seek a doctor who has had lots of experience in diagnosing and treating your disease. This is especially important if you have a relatively rare condition. But even for a disease like Type 1 diabetes or multiple sclerosis, there can be several treatment approaches, only one of which is right for you.
¶Doctors are not good at policing their peers. You’ll want to check with the state medical board to find out if a particular doctor has been disciplined or repeatedly sued for malpractice.
So the job, according to Dr. Gruman, becomes one of finding doctors “who are well trained, have a solid reputation, and have been certified by a reputable institution.” Have you heard good things about the doctor from several sources, health professionals as well as friends and neighbors? Did they say the doctor listens to patients, answers questions, responds promptly to phone calls and sticks with the patient through thick and thin?
“You need to talk with the doctor and get a sense that you can trust and work with him or her,” Dr. Gruman writes. Without a trusting relationship with your doctor, treatment will be more of a struggle than it should be. Don’t hesitate to ask how many people with your disease the doctor has treated and with what results, both positive and negative.
But don’t be surprised if the doctor cannot definitively answer questions like “Am I going to beat this disease?” or “How long can I expect to go on like this?” The answer is likely to be in percentages — your chance based on others who have gone before you. As Dr. Gruman put it, “Because there are so many factors that influence your condition and your treatment, it is difficult, if not irresponsible, for a doctor to promise certain outcomes.”
In fact, you should be wary of practitioners who speak in certainties; quacks are the ones who say treatments are “100 percent effective.”
If you ask doctors how they would choose where to get treatment, most say they would turn to a specialty hospital or academic medical center. If such a hospital is far from your home, you may be able to develop a treatment plan there, then get referred to a doctor closer to home to administer it in consultation with the center.
Before choosing a hospital, you might find out if it delivers quality care by contacting the Joint Commission on Accreditation of Healthcare Organizations at (630) 792-5800 or on the Web at www.jcaho.org to be sure the hospital is accredited. You can also check a government Web site, www.hospitalcompare.hhs.gov, to see whether the hospital meets accepted performance standards for treating specific diseases by delivering care based on solid medical evidence.
And you should make sure the doctor and hospital you are considering accepts your insurance, whether it is a private health plan, Medicare or Medicaid.
Getting a Second Opinion
Patients often worry that asking for a second opinion before proceeding with treatment will insult the doctor they expect to treat them. But as Dr. Gruman writes, “Every doctor, every nurse, and almost every patient I talked with agreed that in this day and age, getting additional opinions about treatment for a life-changing medical diagnosis is critically important.”
She adds: “Those who decide not to check their diagnosis and treatment with at least one additional physician take a risk that they will not receive state-of-the-science care. By checking to make sure you will receive the current standard of care, you can reassure yourself that you are getting the right treatment for you.”
You’ll want to know how certain the doctor is about the diagnosis and whether your symptoms might result from another condition. You should also know what other treatments are available and how they compare in effectiveness and side effects with the treatment your doctor recommended. You may also want to know what could be done if the chosen treatment is not successful.
For some diseases, like the skin cancer called basal cell carcinoma, additional opinions are not necessary because there is one standard treatment. But patients may want more information about their disease and its treatment. They may have difficulty communicating with their physician or feel that they are being treated badly. They may be dissatisfied with how the treatment is progressing. Or they may have been told that nothing more can be done.
“While it is true that many diseases cannot be cured, it is never true that there is nothing to be done,” Dr. Gruman writes. “Even when the prognosis is very bad, a physician can refer the patient to a pain management specialist who can provide treatment to reduce discomfort or to a clinical nurse specialist, for example, who can help develop a plan to manage the symptoms of progressive dementia.”
To smooth the way with your doctor about seeking another opinion, you could say something like “I’d like to consult another expert or two so that I can feel completely comfortable with the treatment you suggest.” Or blame someone else: “My family insists that I get other opinions before proceeding with the treatment plan you outlined.”
If you need help locating doctors who are experts in treating the disease you have, I strongly recommend the Castle Connolly guides, “America’s Top Doctors” and “America’s Top Doctors for Cancer.” Check out the “Special Expertise Index” to identify doctors in your area.