When the Doctor Does Not Know the Answers to a Patient's Questions

[Guest guest]

When the Doctor Does Not Know the Answers to a Patient's Questions

from Medscape Pediatrics

Markel, MD, PhD

Physicians often forget that a basic right of the patient is to ignore their

advice. I was reminded of this recently when a friend who is HIV-positive

told me, " I have heard so many conflicting opinions from you doctors that I

don't know whom to listen to anymore. One doctor tells me that taking

antiviral medications may make my HIV resistant to treatment, while another

tells me that I am committing suicide by not following the prescriptions to

the letter. The more doctors I consult, the more confused I get. What would

happen if I simply stopped taking my medicine? "

Many HIV-positive patients are electing no treatment at all until they

develop overt symptoms. My friend knows better than I do that while many

studies suggest that the medications we currently prescribe for HIV --

especially the well-publicized " triple cocktail " of antivirals and protease

inhibitors that he was currently taking -- increase longevity, none is 100%

conclusive.[1] As any follower of medical research knows, if you wait a few

months these studies are likely to be replaced by newer studies with

markedly different interpretations. For example, 2 recent studies in The New

England Journal of Medicine revealed that high-fiber diets probably do not

reduce the risk of colon cancer despite a huge public health campaign

advising exactly the opposite.[2,3] Also, many of the medications that

combat HIV can be very toxic to the body and often produce a host of side

effects and health problems, such as intense nausea and fatigue and even

liver failure, that are intolerable to many patients. Yet, many physicians

neither discuss these issues with their patients nor invite such questions

from them. Therefore, our patients do not necessarily follow our

prescriptions and frequently choose not to tell us about their

noncompliance.

Physicians -- as well as the majority of patients -- are uncomfortable with

doing nothing when faced with a life-threatening disease. This feeling is

hardly new in our era of miraculous cures. From ancient times well into the

last century, the treatments physicians prescribed for their patients often

entailed such modalities as bloodletting to the point of anemia, blistering,

and using industrial strength emetics or cathartics. As late as 1929, a

shaken Orwell was treated for pneumonia with " wet-cupping " -- a means

of withdrawing blood from an incision.[4] Such " heroic " measures were not

meant to torture or punish; indeed, these physicians, and often their

patients, were convinced, based on their understanding of human disease,

that their methods were curative even if they make the modern-day reader

shudder with horror. Perhaps a century from now -- or even sooner -- our

current treatment of HIV, cancer, and many other maladies will elicit

similar disbelief.

A more serious problem, however, underlies this dynamic. Today, patients

often feel as if they are not actively battling their illness if they do not

take all of the newest medications available or undergo the latest surgical

procedure. I would argue that we physicians ought to know better, for after

all, when someone offers a drowning person a rope, that person is not in a

position to evaluate if it truly is a life rope or a frayed thread. However,

most physicians (myself included) are uncomfortable about " doing nothing "

for a patient who is not responding well to options that may have been

effective with others. We are trained from our first day of medical school

to " do something " without always recognizing that these actions often have

their own harmful results and may cause problems we may not have foreseen.

In an era where medical advances are being made almost at warp-speed, this

is not an insignificant issue. As a result, we physicians frequently offer

experimental agents literally off the shelf to our patients in the most dire

situations in the hope that some good might come from them. The subtext of

these prescriptions, of course, is that to refuse them would somehow be

tantamount to giving up. Even the term we use for so-called treatment

failures, " nonresponders, " is loaded with moral overtones that are rarely

lost on those so labeled.

This is not to say that a hopeful outlook alone will ameliorate the ravages

of HIV, but perhaps it is time that we in the medical profession admit that

we really do not know if triple cocktails, more attentive primary medical

care, or even the changing virulence of the HIV virus itself is contributing

to the improved management of HIV/AIDS. Recent evaluations of highly active

antiretroviral therapy (HAART) suggest that the medications -- even those

with toxic side effects -- do help in the battle against AIDS, but we also

need to recognize that the natural healing power of the body and the

physician's best friend, " a tincture of time, " are often incredibly strong

agents in the conquest of any disease.[5]

In the end, the answer I gave my friend included all of these points, but

the concluding message was " I just don't know for sure. " He seemed to accept

this far better than my medical professors had once led me to believe he

would. I felt in him a renewed sense of strength that I had not detected

when, out of frustration, he posed his initial query. He decided to wait

until receiving the results of his latest battery of tests and consulting

several more doctors and even more of his HIV-activist friends before making

up his mind. It will be a difficult decision that depends on many factors. I

agreed to support him in his decision, whatever it may be, without extending

a judgment.

Markel is a Fellow at the Center for Scholars and Writers of the New

York Public Library. He is Associate Professor of Pediatrics and

Communicable Diseases, Associate Director for Literature and Medicine, and

Director of the Historical Center for the Health Sciences at the University

of Michigan.

http://www.medscape.com/viewarticle/408544

[Guest guest]

What a wonderful essay, a! I, too, prefer a doctor to say " I don't

know " when there is much uncertainty in a particular situation. Both

physicians and patients should change the status quo and create an

environment where it is easier for a doctor to admit that he or she

doesn't know. Or how about a physician who says, " I don't know, but I

will do my best to support you, make you more comfortable, and find out

what is going on. " ?

, dreaming again

[ ] When the Doctor Does Not Know the Answers to a

Patient's Questions

> When the Doctor Does Not Know the Answers to a Patient's Questions

> from Medscape Pediatrics

>

> Markel, MD, PhD

> Physicians often forget that a basic right of the patient is to ignore

their

> advice. I was reminded of this recently when a friend who is

HIV-positive

> told me, " I have heard so many conflicting opinions from you doctors

that I

> don't know whom to listen to anymore. One doctor tells me that taking

> antiviral medications may make my HIV resistant to treatment, while

another

> tells me that I am committing suicide by not following the

prescriptions to

> the letter. The more doctors I consult, the more confused I get. What

would

> happen if I simply stopped taking my medicine? "

>

> Many HIV-positive patients are electing no treatment at all until they

> develop overt symptoms. My friend knows better than I do that while

many

> studies suggest that the medications we currently prescribe for HIV --

> especially the well-publicized " triple cocktail " of antivirals and

protease

> inhibitors that he was currently taking -- increase longevity, none is

100%

> conclusive.[1] As any follower of medical research knows, if you wait

a few

> months these studies are likely to be replaced by newer studies with

> markedly different interpretations. For example, 2 recent studies in

The New

> England Journal of Medicine revealed that high-fiber diets probably do

not

> reduce the risk of colon cancer despite a huge public health campaign

> advising exactly the opposite.[2,3] Also, many of the medications that

> combat HIV can be very toxic to the body and often produce a host of

side

> effects and health problems, such as intense nausea and fatigue and

even

> liver failure, that are intolerable to many patients. Yet, many

physicians

> neither discuss these issues with their patients nor invite such

questions

> from them. Therefore, our patients do not necessarily follow our

> prescriptions and frequently choose not to tell us about their

> noncompliance.

>

> Physicians -- as well as the majority of patients -- are uncomfortable

with

> doing nothing when faced with a life-threatening disease. This feeling

is

> hardly new in our era of miraculous cures. From ancient times well

into the

> last century, the treatments physicians prescribed for their patients

often

> entailed such modalities as bloodletting to the point of anemia,

blistering,

> and using industrial strength emetics or cathartics. As late as 1929,

a

> shaken Orwell was treated for pneumonia with " wet-cupping " -- a

means

> of withdrawing blood from an incision.[4] Such " heroic " measures were

not

> meant to torture or punish; indeed, these physicians, and often their

> patients, were convinced, based on their understanding of human

disease,

> that their methods were curative even if they make the modern-day

reader

> shudder with horror. Perhaps a century from now -- or even sooner --

our

> current treatment of HIV, cancer, and many other maladies will elicit

> similar disbelief.

>

> A more serious problem, however, underlies this dynamic. Today,

patients

> often feel as if they are not actively battling their illness if they

do not

> take all of the newest medications available or undergo the latest

surgical

> procedure. I would argue that we physicians ought to know better, for

after

> all, when someone offers a drowning person a rope, that person is not

in a

> position to evaluate if it truly is a life rope or a frayed thread.

However,

> most physicians (myself included) are uncomfortable about " doing

nothing "

> for a patient who is not responding well to options that may have been

> effective with others. We are trained from our first day of medical

school

> to " do something " without always recognizing that these actions often

have

> their own harmful results and may cause problems we may not have

foreseen.

> In an era where medical advances are being made almost at warp-speed,

this

> is not an insignificant issue. As a result, we physicians frequently

offer

> experimental agents literally off the shelf to our patients in the

most dire

> situations in the hope that some good might come from them. The

subtext of

> these prescriptions, of course, is that to refuse them would somehow

be

> tantamount to giving up. Even the term we use for so-called treatment

> failures, " nonresponders, " is loaded with moral overtones that are

rarely

> lost on those so labeled.

>

> This is not to say that a hopeful outlook alone will ameliorate the

ravages

> of HIV, but perhaps it is time that we in the medical profession admit

that

> we really do not know if triple cocktails, more attentive primary

medical

> care, or even the changing virulence of the HIV virus itself is

contributing

> to the improved management of HIV/AIDS. Recent evaluations of highly

active

> antiretroviral therapy (HAART) suggest that the medications -- even

those

> with toxic side effects -- do help in the battle against AIDS, but we

also

> need to recognize that the natural healing power of the body and the

> physician's best friend, " a tincture of time, " are often incredibly

strong

> agents in the conquest of any disease.[5]

>

> In the end, the answer I gave my friend included all of these points,

but

> the concluding message was " I just don't know for sure. " He seemed to

accept

> this far better than my medical professors had once led me to believe

he

> would. I felt in him a renewed sense of strength that I had not

detected

> when, out of frustration, he posed his initial query. He decided to

wait

> until receiving the results of his latest battery of tests and

consulting

> several more doctors and even more of his HIV-activist friends before

making

> up his mind. It will be a difficult decision that depends on many

factors. I

> agreed to support him in his decision, whatever it may be, without

extending

> a judgment.

>

>

> Markel is a Fellow at the Center for Scholars and Writers of

the New

> York Public Library. He is Associate Professor of Pediatrics and

> Communicable Diseases, Associate Director for Literature and Medicine,

and

> Director of the Historical Center for the Health Sciences at the

University

> of Michigan.

>

> http://www.medscape.com/viewarticle/408544