We physicians enjoy our kingdoms and we don’t take kindly to challengers. Yet the occasional physician who embraces her patient’s empowerment often discovers a gem—a patient who is engaged, adherent, and motivated to get well.
-Dr. Delia Chiaramonte, JAMA Sept. 24, 2008-
I just finished reading Judith Warner's own story, Adverse Effects in the New York Times and wanted to pass it on. It's definitely worth reading in its entirety.
Ms. Warner suffers from miserable migraines that she was finally able to keep under control with a combination of acupuncture, eliminating coffee and practicing meditation.
But then--and doesn't this always happen?...
- Her acupuncturist moved away
- Her beloved neurologist quit private practice
- Her mother got seriously ill
- She was face-to-face with a due-or-die book deadline
- The economy collapsed
- Ragweed season hit
"The doctor’s office — that is to say a nurse — returned my call at 5:15. I had decided on my own by then to taper off my dosage but was still feeling wretched and wasn’t inclined to let her off the phone easily.
Didn’t doctors usually react quickly — and with some concern — when patients reported adverse drug reactions? (According to Sidney Wolfe, the director of the health research group at the non-profit Public Citizen, adverse drug reactions kill about 100,000 people a year and land 1.5 million in the hospital.)
Well, she said, not in this case. “It wasn’t something that was particularly unpredictable.”
No, it really wasn’t.
It isn’t unpredictable that a patient will get little or no information on drug side effects from her doctor — or any kind of real responsiveness if she has a bad reaction. Studies 20 years ago showed doctors to be particularly unresponsive when it came to such concerns, and there’s been no sign of progress since then, Wolfe told me. “There’s pitifully low awareness,” he said.
It doesn’t much matter in the grand scheme of things if someone semi-loses her mind, then gets it back again. The case isn’t one for the record books; that was made clear to me by the nurse, who eventually promised — the next day, when my powers of speech had been fully restored, along with my ability to effectively harangue — that she would indeed relay my story to the doctor."
Think about all the seniors out there--those who are unable to advocate for themselves--or folks who aren't able to their own research--or people who don't call their doctors with suspicious adverse affects. What happens to them?
As Dr. Servan-Schreiber realized when his oncologist told him, "Lead your life normally. We'll do CAT scans at regular intervals and if your tumor comes back we'll detect it early," that being a passive patient doesn't work! He lived his life normally & his cancer returned. He finally came to the only conclusion a thinking person can come to: No one cares as much about your health as you do. And you have to take an active role--pay attention or suffer the consequences.
It's too bad we can't just take a pill and get healthy. It works great for infections--but not always so well for chronic diseases that are years in the making. It's too bad that our health is affected by food, exercise, stress and the environment. But isn't it heartening to know that those are all things that we can do something about ourselves, without a prescription?
Last week I received an email from a physician who is a strong advocate for Patient Empowerment--patients taking an active role in their own health care, along with their physician. It's her belief that the active knowledgeable patient is the ideal patient & the one who has the best chance of a good treatment outcome.
Dr. Delia Chiaramonte's A Piece of My Mind essay in the September 24, 2008 issue of JAMA is spot on. Pay attention & participate in your own health.
Who’s Afraid of the Empowered Patient? by Dr. Delia Chiaramonte
HERE, FEEL THIS,” MY FRIEND SAID, LIFTING HER SHIRT.
Under my fingers, in her 41-year-old breast, was a
After a hellish 6 months of crippling nausea, fatigue, and
the amputation of one of her breasts, Shelly (not her real name)
felt battered, poisoned even, by her wild ride through the medi-
cal machine. She wanted a new breast, a good one, and she
hoped her research would help her get one. She learned about
the TRAM flap, implants, and a newer procedure called the
DIEP. The TRAM flap, which uses abdominal skin and fat to
create a breast, would require the sacrifice of all or part of her
rectus abdominis muscle. The DIEP, on the other hand, would
preserve her abdominal muscles and allow for a quicker re-
covery. She had consulted her support group, her sister the
nurse, her friend the physician, and, of course, the Internet.
She knew what she wanted—the DIEP procedure—and she
had dutifully followed the steps to get it—a referral to an in-
network plastic surgeon, weeks of waiting, then baring her
misshapen chest to the studying eyes of a stranger.
“We’ll do a TRAM flap,” the surgeon said brusquely, not
leaving room for dissent. “What about a DIEP?” Shelly asked,
more meekly than she intended. “No. You should have a
TRAM flap,” the surgeon said. Case closed.
She called me, her doctor friend, crying. “Why won’t he
do a DIEP?” she asked with a quivering voice. Then she
sobbed more than she had after learning she had cancer. This
was about more than a procedure. She had given up so
much—her flesh, her hair, her dignity. Her battered psyche
was fighting to regain a crumb of control. Her hours of re-
search, discussion, and ultimate decision about her recon-
struction procedure were symbolic of a woman taking back
control of her body and her life. With a dismissive “No,”
her surgeon had pulled the rug out from under her shaky
feet and left her in a withered heap on the ground.
“I’ll bet he doesn’t even do the DIEP,” I said. “What?” she
asked incredulously. “Wouldn’t he have just said that?” I
was feeling cynical. “Maybe. Maybe he would have told you,
or maybe he just wanted you to have the procedure that he
knows how to do. Why don’t you ask him?”
That conversation didn’t go well. The surgeon didn’t feel
like being challenged by this “empowered patient” and didn’t
bother to hide his irritation. “I don’t do that procedure and
neither does anyone else in the network, so you can’t have
it,” he said with annoyance. What he didn’t say was “I don’t
do the DIEP, but I know a great doctor who does. He’s out
of network, but since there isn’t anyone in network who does
it, your HMO will still pay.” Why, in honor of physicians
everywhere, didn’t he say that?
The most cynical among us might guess that it was all
about money. After all, if he referred her to another sur-
geon he couldn’t bill for his services. I disagree. I think that
to understand this disordered interaction we need to look
deeper into the shadows, to see the threatened ego and the
battle for control. My friend was trying to steer the health
care encounter to meet her needs, but her surgeon wrestled
the steering wheel from her hands in order to meet his own
need for control.
It would be easy to judge him. We would be more ac-
commodating, more caring, right? Perhaps. It is woven into
our self-concept that we put our patients’ needs above our
own, but is that really what we do? We do give up sleep,
meals, and family time, but how readily do we give up con-
trol? For people facing serious illnesses, the profound loss
of control of their bodies, their lives, and their future is a
significant source of suffering. We have the power to give
back some of that control and ease their suffering. But we
can be stingy.
Yet patients can be stingy too—stingy with their respect
and their gratitude. For all our hard-earned knowledge and
personal sacrifice, don’t we deserve a little reverence? Of
course we do. However, whether we deserve it or not is ir-
relevant because times have changed. Patients are no longer
passive and adoring, and our relationship is no longer hi-
erarchical and paternalistic. It is when we see this change
as a demotion, rather than as an evolution, that our hack-
les get raised.
Rather than being impressed by their patients’ empower-
ment or inspired by their quest for wellness, some physi-
cians are suspicious and occasionally blatantly hostile
toward patients who demand an active role in their health
care. We physicians enjoy our kingdoms and we don’t take
kindly to challengers. Yet the occasional physician who
embraces her patient’ s empowerment often discovers a
gem—a patient who is engaged, adherent, and motivated
to get well.
A truly empowered patient is the ideal patient. Empow-
ered patients will challenge us, yes, but they will also take
their medicine and go for their tests. They will ask when
they don’t understand our instructions rather than simply
ignoring them. And, most important, they will be more likely
to get well, which will make us feel successful.
Are some of them bossy and overbearing? Absolutely.
Some patients attack our suggestions, question our wis-
dom, and doubt our compassion. In their misguided at-
tempts at empowerment they manage to alienate the very
people they are paying to make them well.
Often their attitudes clash with our egos and communi-
cation breaks down. They insist and we resist. Their frus-
tration feeds our annoyance. The irony is that we, patients
and physicians, have the same compelling goals. We both
wholeheartedly want a healthy and satisfied patient. Yet we
often find ourselves firmly planted on opposite sides of the
health care fence. We tout evidence-based medicine, but our
patient wants Reiki. We suggest a local oncologist, but our
patient wants a national expert. We wish for patients who
respect our knowledge and skills, yet we get ones who de-
mand inappropriate antibiotics and plunk piles of Internet
printouts on our desks.
Is there a solution? Can physicians and patients get back
on the same team? I think we can.
Just as in any relationship, it is not as much what you say
as how you say it. “My last doctor always gave me antibi-
otics for this” is irritating and hostile. But “I’m going on va-
cation next week. Could I have an antibiotic that I’ll only
fill if I’m not better by Monday?” isn’t as bad.
Behind the brash tough-guy patient is a frightened per-
son who has been robbed of his health and safety. What may
seem commonplace to us, like cancer, diabetes, and heart
disease, are life-altering experiences for our patients. Of-
fering humanity and quiet presence along with our knowl-
edge brings comfort. A patient grasping for a shred of con-
trol as his health spirals downward isn’t trying to annoy us.
He is simply doing the best he can.
Empathy is contagious. Perhaps as we acknowledge our
patients’ need for control they will understand our need for
respect and trust. As collaborative partners we will be stron-
ger. We will strive for medical excellence, rekindle the pa-
tient-physician relationship, and, most important, bring the
heart and soul back into medicine.
Delia Chiaramonte, MD