An Interview with
by Bonnie Allen
Lucy Thomas can tell you that
Making Informed Medical
Decisions: Where to Look and How to Use What You Find, the book she
coauthored with Nancy Oster and Darol Joseff, M.D., really delivers on its
promises. Two days after completing the book Thomas, a medical librarian, was
diagnosed with oral cancer. In this interview, Thomas tells how she relied
on her own book to guide her through the maze of diagnosis and treatment
options her research uncovered.
The book explains how to read, understand, and evaluate a medical journal
article; make sense of statistics and risks; explore alternative and
complementary therapies; research clinical trials; and make an ally of your
It's no secret that, in this era of HMOs and seven-minute office visits, the
quality of our healthcare is increasingly in our own hands. Making
Informed Medical Decisions maps out a systematic approach for anyone
facing a healthcare crisis, chronic illness, or serious medical decision.
It's also a resource for healthcare providers and those who want to help a
friend or relative get the best treatment. The book includes an extensive
patient questionnaire that helps clarify your own healthcare goals, or
understand how best to help a relative or friend who is ill.
Complementing Thomas's research skills are the patients-rights perspective of
Oster, a medical writer and founder of the
Center of Santa Barbara; and Dr. Joseff's expertise as a practicing
internist and nephrologist.
Lucy Thomas's Story
- I'd like to begin by asking about the diagnosis that made your book so
- It was just a routine dental checkup. A couple of months back, I had
noticed a red spot under my tongue way at the back that didn't go away. I
asked my dentist and he said, "Oh, it's probably nothing, but let's do a
biopsy." It turned out to be something. I got the results of the biopsy two
days after we sent in the final revisions for the book.
- How did your having written this book affect what you did in response
to the diagnosis?
- I was greeted with a lot of alarm, but I knew that you don't have to do
everything all at once. I didn't have a real diagnosis yet--I had something
called atypical cells, which could have been benign, though as it turned out
they were cancerous. But the surgeon was ready to throw me in the hospital
and do a major biopsy. Doing that might have jeopardized further treatment,
because up the road it would have been harder for the surgeon who eventually
did the surgery to get clear margins. So I said, "First I want a
consultation," because neither the dentist nor the oral surgeon really deals
with what it turned out I had. Meanwhile, I did research. After I had the
consultation with the oral surgeon, I went to an ear, nose, and throat surgeon
to talk about treatment.
I was really grateful for the chapter on Patients' Rights, written by Nancy
Oster. I used every bit of it for myself.
- Do you think the book nailed the subject?
- Yes! The theoretical part was very helpful. So were the patients' stories.
We interviewed people for the book who told us how valuable it was to their
healing and treatment to talk to somebody who'd been through the same thing.
As it became clear I would need major surgery, I asked the doctor for names
of people who had the same surgery I would have.
One woman was especially helpful. I've never seen her face to face, but I
talked to her on the phone and she kept saying, "Don't let yourself get down.
Every day is a little bit better." If I'm having a bad day, I think "Well,
tomorrow's going to be a little bit better and the next day better still,"
and she's been right about that. I was also prepared for what was going to
happen to me. When the doctors replaced my jawbone with a bone from my leg, I
couldn't take a regular shower for a long time. The doctor didn't have any
idea how long. This same woman was real clear about it, and she gave me some
tips on how to keep myself clean. Little stuff like that makes a big
- Most of us tend to think that if you're diagnosed with a condition, you'll
automatically be given the best therapy to overcome that condition. But the
book--and your example--make it clear that there are many options. Can you
give an example where treatment options require patients themselves to make
difficult decisions about the course of their therapy?
- There are so many. In my own situation, I could have had major surgery,
which involves replacing a piece of my jaw with bone from my leg to make sure
they got all of the cancer in that area, or they could have just taken tissue
out and done a lot of radiation in my mouth. Well, I looked into the side
effects of radiation and found it can be devastating. It can kill your saliva
glands and your taste buds.
My doctors told me I might still have to have radiation if they couldn't get
all the cancer, but they were pretty sure they could get it all with major
surgery. In the end they did.
Evaluating Medical Information
- What do you tell non-medical people who want to read journal articles or
- We tell them to be skeptical. Journals have the newest treatments and
theories about an illness, but they are untested, and claims about a drug's
effectiveness may be exaggerated. We want people to look closely at the
numbers. If it's a clinical trial, how many people were involved? Ten,
one-hundred, a thousand? Sometimes the article makes a fairly sensational
claim, even though there are only five or ten people in the study. We tell
them to compare what the article claims to, say, what's in the textbooks. Look
at the numbers of people and how they were chosen and whether there were any
financial interests supporting the study. Did a drug company pay for the
research that supports this drug?
- There are a lot of medical terms in these papers. Is there a medical
dictionary to help people understand?
- We have medical dictionaries in the library, but there's also one on the
Web in the free database called
Medline Plus. Anybody who has Internet access can get
to a medical dictionary.
- Your book is unusual in that it tackles statistics. For most of us,
statistics can be very hard to grasp intuitively. How does the book help
people evaluate statistics?
- This is Nancy's specialty, but there are some very good explanations of
some of the concepts that aren't always made clear in, say, a journal article.
Sometimes papers don't explain what kind of risk they're talking about.
For example, one in 100,000 people would normally get some condition and if
you give a certain drug to all 100,000 only one in 50,000 would get it. They
could say, "This drug decreases your risks of getting the disease by 50
percent," and people think, "Great, let's all take this drug." Well, one in
50,000 is still pretty low risk. Why would you take a drug every day to go
from one in 100,000 to one in 50,000? The statistics chapter helps you
understand how those numbers are derived.
I remember a hormone study that showed one drug to be detrimental. My staff
and I had that study torn up in about five minutes because the number of
people who had a bad reaction was small, and they all lived in the same town
in Sweden. They could have all been related, you know? And when you looked at
the numbers of people in the study and the number of side effects, it was
minuscule. We laughed about it, because for all we know, it could have been
the water they drank! We decided it wasn't really a good study, although it
got a lot of press because it was about hormones.
- So much information is now available because of the Internet. Perhaps
there's too much for people to digest. How does the book help people sort
through all that information and make sense of it?
- We tried to readers the most reliable Web sites--such as the
National Library of
National Institutes of
Health, and the
Institute. And we gave them some guidelines for what to look for in a
Web site. Because the Internet is so new, people think if they found it on the
Web, it must be true. We give them warning signs to look for: If it cures
more than one or two diseases, if they ask you for money, or if ingredients
are secret. Other red flags include testimonials, because that typically
doesn't happen; a "doctor" who's not an M.D.; or an offer to let you help
sell their product. The basic rule is, if it seems too good to be true, it
- In what other ways does your book help people look for information?
- We advise people to look at all aspects of the treatment and ask
questions. Find ways to get your questions answered in the very short time
you have with any doctor.
- I've certainly experienced that! You're in the office with your doctor
and she's looking at her watch.
- Or say you have a diagnosis that managed care prefers to treat in a
particular way, and it's not the best way. One woman was in a real
managed-care nightmare. She had a thoracic outlet syndrome--a pinched
nerve--because of a car accident. They told her they were going to take out
a rib! It's the most extreme treatment for what she had, but it's fast and
cheap. The recommended treatment is six months of physical therapy to release
the pressure on the nerve, and that usually works; if it doesn't work, then
they might look at surgery. But the HMO was trying to save money by taking out
a rib. This woman was nearly hysterical because they wouldn't consider
anything else. When she found out what the recommended treatment was, she
fought to get it.
- Did she succeed?
- She did. But she needed to be armed with information, because the only
other thing her HMO offered was to send her to a psychiatrist because she
seemed so upset!
- Patient empowerment represents a clear shift in the doctor-patient
relationship. How well are most doctors coping with patients who come armed
with all these study results and technical questions about different options?
- Some of them don't want to deal with it. But I think if you meet them
halfway, most of them do really well, providing you don't bring them a
telephone book's worth of stuff and say, "Would you go over this and tell me
what you think?" If you read everything you find and sift out the five or six
really big questions, then, if the doctor says, "Oh, don't worry about
that," you can say, "What about this study that says I should worry?" They
really appreciate it if patients focus in on specifics.
Non-Medical Support is Important Too
- This book covers some aspects of illness that are not strictly medical,
such as social and spiritual support. Has this kind of support been shown to
make a difference medically?
- Definitely. Probably
the best study to support it is by David Spiegel,
M.D., at Stanford University, on a support group for women who had metastatic
breast cancer. In other words, they had a terminal illness. But compared to
another group that didn't have a support group, these women lived 18 months
- That's impressive.
- Support can help in so many ways. Concerning my condition, people warned
me that I should look out for depression that might set in because the
healing is so slow. My doctor even gave me some pills to take if I start to
get depressed. But she said, "Don't take these unless you really get down."
And I haven't, but then I have a good support network. People look in on me. I
seem to get a get-well card every day, or a get-well phone call from a nurse
who tells me she misses me and then fills me in on all the gossip at work.
More and more research comes up with the same answer, that your spiritual and
emotional health impact your physical health. In the healing community there's
a difference between healing and being cured. Sometimes you can't be cured,
but you can be emotionally and spiritually healed. Some people can be cured
but not healed; their scars go away but they still have an illness mentality.
- Is there anything that you'd like to add in closing?
- The medical system can be very frustrating, especially right now with all
the changes in healthcare. Knowing how to get information can ease the way so
much and help you to be your own advocate. We felt we had the knowledge to
help people learn to find this information on their own, and we thought it was
really important to share this knowledge. We wanted to give people a head
start, so that if you get a diagnosis or even if you're just worried about
something, you don't need to feel alone and, so to speak, unarmed. This book
was a labor of love for all three of us.
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