CODI: Cornucopia of Disability Information

How to Dance with Your Doctor: Dialogue Between Physicians and Consumers

How to Dance with Your Doctor: Dialogue Between Physicians and Consumers 


Laura Mosqueda, M.D.
Co-Chief, Clinical Gerontology Service 
Training Director, RRTC on Aging
Rancho Los Amigos Medical Center
Assistant Professor of Family Medicine
USC School of Medicine


Patti Strong
Polio Survivor; Chairperson,
Rancho Los Amigos Medical Center Post-Polio Support Group


Robert Potter
Stroke Survivor
Stroke Support Group
Presbyterian Intercommunity Hospital
Whittier, CA

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Speaker 1 -- Mosqueda: Welcome to this workshop. My name is Laura Mosqueda.
I'm a family physician and did a fellowship in geriatric medicine.  The three
of us are delighted to see such a turnout. Just to tell you the game plan --
if you could each introduce yourself briefly and tell us what your goals are
for this workshop, so we can try to accommodate you. And then Patti, Bob, and
I are each going to talk for a few minutes about some of the issues from our
perspective. We have prepared a chart on how to be a good doctor and how to
be a good patient (see Table 1).* Then we would like to allow a lot of time
for discussion. So without further ado, I wonder if we can just go around
quickly and hear each one of you.

Introductions are made.

Well, it's nice to meet all of you; I thank you for coming.  We're going to
try to avoid getting into too many small anecdotes and will try to keep it a
little more focused on issues. So, of course, after I say that I have to tell
you one anecdote. I never learned anything about polio in medical school
other than nobody really has it any more because we have vaccines. Then when
I was a family practice resident, a woman from Vietnam came into the clinic
and said, "I have post-polio syndrome." She told me all these symptoms she
was having, and the pain and fatigue, and how she was going to take care of
it by working harder and swimming more. I told her I didn't know anything
about post-polio syndrome, but I'd find out. I ended up sending her over to
Rancho, where I saw some of the literature that was coming out from Dr.
Perry's work.  So, you're right, just to validate what all of you are saying,
we [physicians] aren't taught about it, and there are some of us who are now
out to change that. I'm very active in medical education and we're working on
some of those things.

Speaker 2 -- Strong: This is a progress report; I don't claim to be an
expert. As leader of the Rancho Los Amigos support group, I get calls daily,
mostly from L.A., but truly from all over the country. One of the things that
we exist for as a post-polio support group at Rancho Los Amigos is referral.
This means that I spend a lot of time on the phone talking about how to dance
with your doctor. Over the years I have formulated these suggestions into a
list of practical tips (see Table 2). What I would like to do now is to
highlight how some of these tips can work for you.

First, be a person, not a patient. It is a matter of self-identity. As you go
to a doctor, you need to be clear in your own head who you are. You are more
than just your disease. You have a history, you have a family, you have
dignity. At times we freeze up, maybe because of the prior histories we have
with the medical profession. We carry with us emotional baggage. To us, the
doctor is next to God because when we were two and got polio, we really did
have our lives in their hands. So you are more than just a patient. First you
are a consumer; you pay for your care, or your insurance does.  But we are
more than just our disability, more than just our illness.  So we need to
insist on how we want to be treated.  That attitude will affect everything
else.

Second, be a peer, not a party pooper. Sometimes it's hard to find support
groups. They don't have a lot of money, they don't get grants from
foundations, and so they don't run ads in newspapers. But once you find out
that there is such a thing as a support group, use it; that's what we're here
for.

I want to introduce to you a packet of information that my particular polio
support group puts out; it's available for $2. We keep getting the same
questions: "I think I have post-polio syndrome. What is it? Will I ever get
over it? Is there a magic pill? Who do I go to? Where can I get more
information?" This packet might provide a model if you don't have such an
information packet for your area or your group.  It lists neurologists,
orthopedists, physical therapists, occupational therapists, and psychologists
with interest in post-polio, some of whom are survivors themselves.  And
then, of course, you have to educate your doctor, unless you're really lucky.
I was experiencing vague symptoms that I didn't understand in 1983 and 1984,
when I got Epstein-Barre, the chronic form of mono. I happened to catch a
news blurb on TV from Warm Springs, Georgia, the first thing I'd ever heard
about post-polio. I thought, post-polio, I'm only "thirty-something." Are my
symptoms related to that? I called Warm Springs and I got referred
immediately to Dr. Jacquelin Perry and the Rancho Los Amigos polio clinic. I
stumbled into it easily and well.

But some of you don't have that option, you're too far away; you've got to
educate your own doctor. So this packet is a place to start. It has a letter
from Dr. Perry to physicians.  You go in as a survivor and you say,
"Post-polio syndrome is the following." And unless you have somebody
wonderfully humble, like Dr. Mosqueda over here who does research, they'll
look at you and say, "How do you know? I'm the doctor." But if you take
something from a doctor to a doctor, they're more likely to read it. So use
literature to educate the doctor.

I see several physicians and one thing that I do say to people is, "Polio is
a neuromuscular disease." The nerves were wiped out so the muscles were wiped
out. Doesn't it make sense to go to a neurologist as well as to an
orthopedist, at least if you're not getting the answers, or seeing the
progress that you want to see? We all have our own magnifying lens through
which we look. We're finite. Doctors can't be expected to know everything or
have every perspective or try every treatment.  So I often say, "Use both
sides of the street." Don't just educate your doctor but educate yourself.
You've always gone to a neurologist, maybe you need to go to an orthopedist.
You've always gone to an orthopedist, maybe you need to go to a neurologist.
Maybe you need to go to a physiatrist or a chiropractor. But educate
everybody you come in contact with and educate yourself.

More Practical Tips

Third, be a private eye; you have to know your own case before you can give
your doctor the clues. The doctor is not a good fairy waving a magic wand
that is going to make everything just wonderful for me; he or she is a
detective who has to look for clues. I'm a mystery to this doctor. I got a
call from a friend, a polio survivor with odd symptoms. I asked her a couple
of questions.  I said, "The tingling and numbness and burning that you feel
in your limbs, does it make a difference what body posture you're in, what
the time of day is, how fatigued you are? Have you noticed any relationship
with diet or your life style?  Have you started using a new laundry
detergent? Could it be a food allergy or a change of medication?" Keep a
journal so you can tell the doctor. If you go to a doctor for the first time,
present him with something written that can be quickly reviewed. Yes, I had
polio at age such and such; I had surgery aged so and so, the medications I
am on now are, the strengths of the medications are, I take them how many
times a day.

Part of being your own case manager is being a good paper pusher (Tip 4).
Read medical papers. Go to medical libraries.  How many of you are getting
Health Care for Polio from Rancho Los Amigos? Do you know you can use their
medical library? You can drop into a hospital library and use it. You can go
to your public library if it's good enough and ask the reference librarian to
get an article. Once you get one article, it can lead you to more research.

So, if you don't belong to a support group, at least get on the mailing list
for their newsletter. That will always suggest a number of other things to
read. Once you start getting other newsletters, then you begin to know about
some of the major medical journals that are concerned with polio.  You know
to look at Annals of Neurology and Orthopedics. Quite often those medical
papers can present clues and you can suggest to your doctor a new therapeutic
approach. So be a paper pusher but also present your own papers to the
doctor.  Go in with your ammo. Go in with your symptoms.

Dialogue

Male participant: Just a comment about this one thing. I did go to one doctor
that I was seeing for the first time. I wrote my own little history that
could be read in less than two minutes, I mailed it to him before my visit,
and then I called and spoke to his nurse about it. We had the most
interesting office visit I've ever had with a doctor. He said he didn't know
anything about post-polio, had been too busy to read about it; but when he
had a patient coming in and he now had the whole background, it took on a
whole different character.  It's something that I might suggest, a technique
of taking charge.

Strong: Excellent! You did your own background work for this doctor. Also,
it's your right to have your records. Every time you leave the office, say to
the desk person, "I'd like a copy of today's visit, please," and that goes in
your loose-leaf binder. Make it a practice and keep it an ongoing thing, and
you can have your x-rays and all sorts of things.

Speaker 2 (continued):

Fifth, be a partner, not a patient; it's a matter of attitude.  Dr. Maynard
and I were talking during the break time and he said, "You know we learn from
each other, survivors learn from doctors and doctors learn from survivors."
If you don't expect the doctor to fix you, but to enable you to live a more
productive life, that's half the battle. Being a partner means you have to
give them the right information, you have to let them be a person, you can't
expect them to be omnipotent.

Tip 7: Bring a tape recorder or a pal who can help to document important
information. When I knew I was in crisis and it was going to be really
important for me to understand what the doctor said, I said to the doctor,
"Do you mind if I tape our time together today? I really want to be able to
understand when I get home, and I'm not sure I'll remember half of what I
heard." The doctor said, "Sure, no problem."  You can also bring a pal who
can just listen and afterwards you can ask your pal, "What did the doctor
mean?"

Tip 8: Be polite, but double-book if you need extra time with the doctor;
otherwise they're going to be rushing you out the door and you've only got
half your list answered. Now your insurance may not pay for two appointments
in one day. That could be a problem. But what's your health care worth to
you?  It depends on how much of a fix you're in as to whether you want to do
that, but a lot of people say, Oh, the doctor was in and out in two seconds;
well, usually 15 minutes.  The doctor's time is money and you can't expect
him to spend 45 minutes with you if he has a 15-minute turnover period.

Dialogue

A woman participant: What do you do when the doctor (a specialist) doesn't
speak English, and the only other referrals on your HMO list are doctors who
don't speak English well?

Mosqueda: I think you need to start screaming at the HMO administrator. As a
primary care physician, I'm limited as to what is going on there. I tell
people, If you're not satisfied, then write a letter to the administrator and
medical director. In an HMO system you're stuck with the physicians they
provide. If you're not happy, complain, and ask your primary physician to do
likewise.

A man: I have a friend who has a similar situation; a medical administrator
by training. I told him to write a letter to the head of the HMO, with a copy
to the California State Consumer Affairs Department, demanding that an
interpreter be present at the examination; a copy also went to the state
medical board. They got such fast action that you can't believe it.

Speaker 2 (continued):

Tip 9 suggests you strike a balance. Be plebeian but proud; don't give up.
Ask: Isn't there anything else we can try?  Aren't there any more assistive
devices? any medications? any new treatment? any theory? Isn't there
anything? And sometimes all it takes is the sheer determination that you're
not going to put up with this.

Sometimes there is no answer. On the other hand, not wanting to give up
sometimes can work against you in the sense that you keep going back to the
same well and it's always been a poisoned well. You think, "The doctor didn't
really seem to help me last time, but I guess it was my fault." Maybe it's
time to try somebody else who's been to a new conference and heard about a
new theory or treatment. If you can financially switch, ask your support
group. Call and say, "Who's good?"  And we know.

Finally, I tend to believe in a whole person approach to wellness, so I pray
for myself and my own well-being and that of others around me. I also pray
for the doctor. And then I try to pass it on. For example, I went to a
gynecologist and met a woman who had polio. Her husband who was also in the
practice would therefore know something about post-polio syndrome; so I
changed to my doctor's partner. Then I told other women in my support group,
"I know a gynecologist who knows something about post-polio." So pass the
information on.


Speaker 3 -- Potter: To elaborate on what Patti said, I went through therapy
and got to a point where my doctor said, "I think that's all we can do," and
I felt that I hadn't gotten where I wanted to be. So I asked for a
re-evaluation, which is your legal right to do, and I progressed further
through that re-evaluation.

I'm not only a stroke survivor, I'm a cancer survivor. The reason I had the
stroke was because of the chemotherapy I was on. And I have survived the
cancer; it's in complete remission. So I have seen a lot of different
doctors. When I went into the hospital, I was still taking chemotherapy, so
they had to give it to me in the hospital. I ended up with more problems. You
must keep after your doctor to make sure he or she knows what other steps
you're taking in addition to their recommendations. Check everything that he
or she is saying. If you're in a stroke support group or polio support group,
check with somebody in that group about it. Maybe there's something that they
know about it that you don't.  Doctors are there for your care, but a lot of
times they don't know the correct steps.
 
Just to give you an idea: When I went in for a problem that I had, the doctor
said, "Well, take these pills and let me know how they work because I've got
the same symptoms." It was the wrong thing.  I had cancer, I didn't have a
stomach problem.

Dialogue

A man: How long did you take the pills?

Potter: Six months, and I changed doctors.

Mosqueda: I have to say, I often wonder how many marine deaths I'm
responsible for, because I'm always telling people to flush inappropriate
pills. There's a lot of medication in Santa Monica Bay.

A woman: I didn't tell anybody that I had had polio, and I don't think even
my husband knew for a long time. And I asked my doctor if the weakness in my
legs could be from the polio 40 years ago, but he had never realized I had
polio and said it couldn't be. I look well and healthy and everybody thinks
this woman is faking. I don't get any sympathy.

Speaker 1 (continued):

Let me just mention, from a physician's perspective, what a doctor is and
what sort of training we have. All of us have at least a bachelor's degree
and many have a master's degree. And then you go to medical school for four
years. The first two years are spent in the classroom learning valuable
things that you'll never use again in your life, like every kind of virus
that exists, because your particular professor happens to be doing research
on that topic. Then the last two years of medical school are spent in
clinical rotations where you're in the hospital, and almost all of it is
acute (hospital-based).  Very little outpatient work gets taught. And where
do most of the doctors do all their work once they are in practice? In their
offices. So that's medical school.

After medical school you have your M.D. degree, but you're not a licensed
physician. After a year of internship, which can be in a variety of different
areas, but it is fairly general, you can then get your medical license.
People who have just done internship and nothing more are GPs, general
practitioners.  It's not a specialty. Then, for instance, I chose to do a
residency in family practice, which is a total of three additional years. So
my specialty is family practice. Some of you have internists; they've done a
residency in internal medicine. And if you want to sub-specialize, you can do
a fellowship. I did my family practice residency and then I did a two-year
fellowship in geriatric medicine. A cardiologist has completed an internship
and residency in internal medicine and then a two-year cardiology fellowship.
So just to give you a brief idea about what medical education is, it doesn't
really have its focus on what we're going to be doing most of our lives, and
that's really a shame.

A Doctor's Day
 
What does a doctor do besides seeing patients? I'm in a unique situation: I
do some clinical work and some research and some teaching. I also have a
small, private family practice. From that perspective, I do work with HMOs
and have a pretty good idea of what a typical office practice is like. We are
doing a lot of paper work. Don't forget that after you leave the office, we
have to write up a note on the visit. What did you tell us? What were our
physical findings? What is our assessment of the situation? What did we plan
to do?

There's laboratory work; whenever I go into my family practice, there is a
stack of laboratory results that need to be reviewed. Usually, if there have
been any x-rays or scans done, I like to go to the hospital and review them
myself with the radiologist rather than just seeing the report. And HMOs take
a lot of time and paper work.

There is also a significant amount of time returning phone calls, talking
with other physicians. I view my role as a primary care physician as being a
coordinator for care. If I have a patient who is seeing a cardiologist and an
orthopedist, I want them to talk to the specialists. If somebody is going to
put them on a medication, most of my patients know to call me and talk to me
about it first, and then I like to be in contact with the specialist.  When
you come in for a 20-minute appointment, that's actually for me about 10
minutes more because of everything else that goes along with it. But I'm also
spending an hour and a half or so after all my patients leave doing all my
paper work at the end of the day.

Concluding Dialogue

A woman: How offended would you be if you had a patient who asked you to read
back what you wrote down?

Mosqueda: I wouldn't be offended by that at all. Sometimes I will take notes
while the patient is talking to me; sometimes I'll wait until afterwards. The
patient can comment on it, too. Some doctors don't mind if you're pushy and
some do. A lot of finding the right doctor is just finding the right fit
between your personality and the doctor's personality. What works for Patti
might not work for you; what works for you might not work for Bob. I tend to
come from a model of shared decision making and so I might not be as
comfortable with those of you who want to be the orchestra leader. If I'm
giving somebody antibiotics for a sore throat, it's a decision that gets made
together. That's what works for me. I also tell people when I don't know.

Potter: I have a doctor who tape records right in front of me what he is
going to be typing into my records so I hear what he is saying. And I asked
him to send that to all my other doctors. This is the one who was treating my
cancer.
  
A woman: I was going to four doctors; I had 14 bottles of pills. I took them
to one doctor and said, "I've had it! I don't want any of them."

Strong [laughing]: So, the doctor said, "Here's a pill for your anxiety"?

May I say something that I forgot to say? That is, use your pharmacist. I
find that my pharmacist is one of my best sources of information about my
health because every time I get a new doctor who gives me a new pill, I first
check with Raffi. I want the little paper that comes in the little box of
pills, I want to read the contraindications. There is actually a law now that
pharmacists are supposed to talk to you about that.

In response to comments about going to a clinic where the patient doesn't see
the same doctor twice, or where the doctor seems to ignore you:

Mosqueda: If anybody is going to a doctor who feels you are a lost cause, get
rid of that doctor. This is supposed to be an advocacy kind of thing, a
relationship. You don't want to be in a relationship with somebody who thinks
you are a lost cause.

A question about lists of questions to ask your doctor.

Strong: When you make out your list, you start with a Post-It on the side of
your refrigerator about three weeks before your appointment date. Whenever
you think about that symptom, you write it down on the Post-It and then
transfer it to some legible form and duplicate it. Start with the most
important thing first, and you don't let the doctor out of there until you
have your list answered.

Mosqueda: I would qualify that. I encourage all my patients to bring in lists
of questions. But if somebody comes in with a list of 12 questions, I'm going
to say, choose the two most important ones. I don't have two hours to spend
with one person.

Strong: And that's where it comes to being polite; double-book if you know
you have 12; you'll need two appointments.

Another question.

Mosqueda: The question has to do with a big organization and their screw-ups.
Go to the top. Doctors make mistakes. It's a lot of pressure to be a doctor.
I am not perceived as being somebody who is allowed to make mistakes, and I
do make mistakes. The tricky question is, was this mistake made out of
malicious intent, or was it an "honest mistake"? Was this tool not used
because they didn't think of it, because it really was something that didn't
seem indicated, or was it not used because of ignorance? That's a different
issue.

If I've made a mistake, I want my patient to tell me that. The feedback is
very important for us to know, and need not be hostile. You have to remember
I'm sensitive because I work for the County and there was just a shooting at
the ER.  I think what Patti said is very important also, this idea about
getting a second opinion.

Strong: One of the things I think is important is if a certain treatment is
prescribed -- especially if it's surgery -- you need to listen to your gut.
You need to listen to that inner voice and then be able to say to the doctor,
"If I don't do this treatment, surgery, what will happen? Am I going to die?
Is it going to get worse immediately? Is it just a matter of whether I can
put up with the pain? Then I don't have to have the surgery?" My bottom line
is always function.  So I have chosen not to have carpal tunnel surgery,
because I can put up with the pain. It's pretty bad, I sleep in a wrist brace
at night, I ice my wrist, I try not to use my wrist. I only have one wrist, I
have to use something. But I have chosen not to have the surgery because I
don't want anything to injure the only hand I've got. So that's my choice,
yet I've been told several times, "We can do carpal tunnel. It's real easy.
We do it all the time. I've done 2,000 of them."

Mosqueda: What we're talking about really is informed consent. With informed
consent, you don't just tell what you can do; you always need to include: "We
can also not do anything." That's what Patti is talking about and that often
gets missed. What will happen if we don't do anything at all?  Because we
tend to get fairly procedure-oriented.

A woman described her problems with insurance.

Mosqueda: You're right, it's frustrating. I have some patients for whom I
want to get something through their HMO and I write letters and they write
letters and we still can't get it. But I don't give up. We have made notes in
the chart; every three months we're going to hit it again. We're just going
to do it as a team, to try and get it. Eventually, sometimes you get them to
break down.  Strong: I have a friend who had much that same experience trying
to get a power chair rather than a power scooter. It took nine months, but
she finally won. But you aren't always going to win. You need to ask, Is
there any alternative? If you can't get them to pay for physical therapy,
would they pay for chiropractic? Would they maybe do acupuncture treatments?
Or can you learn to do stretching or whatever it was on your own?

A man: Is there any structure in this whole post-polio environment to start
working with the medical societies to get on their speaking agenda to start
informing them? Is anything being done along those lines?

Mosqueda: No. I'm trying to encourage Dr. Perry to write a review article for
primary care journals to talk about post-polio syndrome. I agree that
education is the key for physicians and it's not happening. And education for
the insurance companies, as Bob just said.

Strong: Physiatrists have an annual meeting and the last two or three years
there has been one whole special day devoted to nothing but post-polio
issues. So look for the Annual Convention of American Physiatrists; they do a
good job.

A woman: I've been through this very same thing with a lot of after-stroke
people, maybe 50. What happens is the medical insurance will schedule them
for three months' therapy. At the end of three months they are just starting
to walk again and really need therapy; and they cut them off.

Potter: That's what I was going through when I said I had re-evaluation. Once
we did a re-evaluation, it triggered the process all over again and my
insurance started picking it up.

The same woman: You ask for re-evaluation with a different doctor and the
same physical therapists. So what happens is, you go a step up, and you get a
re-evaluation. That doctor says that you need more therapy, she sends you
back to the same therapist and you continue with the therapy. I have a lot of
stroke people right now who were still using a walker and now they're walking
with just a cane. They would never walk if we hadn't been able to fight this
maze of doctors who treat people like numbers.

Mosqueda: See, that goes back to what Patti was saying about being
persistent.

Another woman commented.

Mosqueda: You can get the names of a doctor's patients? I'm very surprised.
That sounds like a breach of privacy to me, and frankly, if I was a patient,
I would resent it, because I don't think that should be public knowledge
unless the patients choose for it to be. To me that is a breach of
confidentiality. I think you have a right to go and interview a doctor, but I
don't think I have a right to give out names of my patients to anybody
without their permission.

Potter: Get to know your doctor. Get to know more than one doctor. Don't be
hands-off with your doctor. Be honest and get a working relationship with
him.





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