Consumer/Quality Insider: AHRQ Booklet - Next Steps After Diagnosis
Debra: This is a Healthcare 411 Special Report for the week of March 1, 2006. Healthcare 411 is produced by AHRQ, the Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services. I’m Debra James. Hearing a diagnosis of a serious disease can be a frightening thing for most people. And they often aren’t sure what they should do with that information. AHRQ has produced a booklet to help you think about what to do next. It provides questions to ask your doctor before you make a treatment decision. And it provides some resources to help you find information on your own. AHRQ Director Doctor Carolyn Clancy talked with us about the booklet called, "Next Steps After Diagnosis." Here’s Rand Gardner with Dr. Clancy.
Rand: Dr. Clancy, thank you for joining us.
Dr. Clancy: My pleasure.
Rand: Tell us about AHRQ’s new booklet, "Next Steps After Diagnosis." Why is this information important?
Dr. Clancy: Being told that you have a new diagnosis, especially if its a serious condition, is a very frightening experience to go through. So, instantly, you need both some good information and you also need to know that it is okay to feel scared and that, if you don’t have someone with you and you’re not thinking ahead, half of what the doctor or other people are telling you is going to go right out of your head. The extent to which people are scared when they hear about a new diagnosis, of course, depends on the diagnosis itself. A very common reaction is the sense of Oh, I walked in here totally normal and now because of an x-ray or blood test or some other finding, I’m being told that my life as I know it is changing quite dramatically. That is, of course, terrifying. And what it means is that even as a well-intentioned health professional is giving you all kinds of information about what happens next, what needs to be done and so forth, your mind is just in a total whirlwind.
Rand: Well what can patients do to ensure that they’re going to hear and retain important information the doctor may have for them after they have just been given a startling diagnosis by the doctor?
Dr. Clancy: To some extent I think most people need to realize that you’re going to go through that emotional firestorm, if you will, and what’s very, very helpful is if you have someone with you, someone who can pay attention, who is not being directly affected by this news themselves. So that if you forget to ask obvious questions, or if the doctor says something to you that is really startling like, you’re going to have to have open heart surgery in an hour, they can say excuse me? Why in an hour? So knowing that this is a normal part of the experience, I think, and hope, can be reassuring for people.
Rand: When patients get serious news about their health aren’t they usually alone with the doctor?
Dr. Clancy: Whether someone is by themselves or not is going to depend a lot on the particular news. Sometimes its actually going to be happening in the hospital if you were, to say, go to the hospital with the sudden onset of a new kind of symptom. Other times its pretty clear what’s happening. For example you go to have mammogram and suddenly the radiology technician needs to take many more pictures and has that funny frown which says I-cant-tell-you-anything-but-I’m-feeling-nervous-about-this. So the circumstances can vary quite a bit. Sometimes you are simply going to need to go back for a second appointment. I think a very important take-home message for most people is that it is highly unusual that you actually have to make a decision right now. You actually have time to stop and think, to take some really deep breaths, to actually look for other information, to ask questions about alternatives, and so forth. That may be the most important message that people get out of this brochure.
Rand: How can patients learn enough about the options to make an informed decision?
Dr. Clancy: A lot will depend on what the diagnosis is. There are some conditions for which there is one pretty clear path about what needs to happen next and the decisions are going to revolve around where and when to have the next set of treatments taken care of and so forth, and/or diagnostic tests for more precision. There are other conditions where there’s going to be two or more alternatives and that is where decision making gets more complicated. The good news in 2006 is that there is an increasing number of situations where you have two or more options that are roughly comparable in terms of how effective they are. And what that means is that you need to choose -- make the choice that’s right for you. Often times a health professional may or may not tell you about all the options, so its very important for you to be looking for other sources of information as well. For example, a physician who’s treated patients with a particular condition may have always referred them to a surgeon, and recently there’s a new medical treatment that wouldn’t require surgery. It isn’t that the doctor is trying to hide anything, it may just not occur to them because all his or her other patients have done very well with surgery. In the booklet itself there are a number of resources from the Web as well as phone numbers that you can call to get better information.
Rand: Dr. Clancy, what about second opinions? How important are they?
Dr. Clancy: Second opinions can be very helpful if you need reassurance that the choice you’re making is right for you, that it makes sense, that its going to be the right balance for your situation between benefits that you’d expect and potential harms or adverse effects. Having said that, it can be a little bit tricky to get a second opinion. Occasionally, physicians will refer patients to one of their colleagues, immediate colleagues, for a second opinion. That’s probably not the best idea in terms of getting an independent assessment. Often times it takes a little bit of thought before you go in for a second opinion to figure out, how do I ask this question in a way that doesn’t make it sound as if what I’m saying to the second doctor is what did you think of doctor number one. Because what you’re really there for is simply an independent assessment. Most good physicians would welcome a second opinion, especially if there’s any lack of clarity about the diagnosis and what the next treatment steps are. Occasionally some will be a bit resistant and defensive. Its important to know that. It can be very important at that point to have a friend or family member with you.
Rand: Well, what if people don’t have any family to turn to for support? What do you suggest?
Dr. Clancy: There are certainly lots of information resources and if the diagnosis happens to be cancer, the National Cancer Institute really has a terrific service where you can chat with advocates and so forth who will help walk you though what some of the next steps are and specific circumstances you should be aware of. Bringing a co-worker, a member of your church or other community group the point is not that you need to have a blood relative. The point is to bring someone who is not directly affected by the situation being discussed who can listen with another set of ears so that you can be a bit more reassured that you didn’t miss anything important.
Rand: Dr. Carolyn Clancy, thank you.
Dr. Clancy: Thank you.
Debra: Copies of "Next Steps After Diagnosis," as well as other brochures and fact sheets for patients and their families, are available on AHRQ’s Web site at www.ahrq.gov/consumer. Printed copies are available by sending an email to firstname.lastname@example.org, or by calling AHRQ’s Publications Clearinghouse at 1-800-358-9295.
Debra: Healthcare 411 is produced by AHRQ, the Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services. For Rand Gardner, I’m Debra James. Thanks for listening and join us again for another edition of Healthcare 411.