When Trust in Doctors Erodes

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[sSRI-Research] When Trust in Doctors Erodes

 

 

 

 

When Trust in Doctors Erodes

 

ALLIANCE FOR HUMAN RESEARCH PROTECTION (AHRP)

Promoting Openness, Full Disclosure, and Accountability

www.ahrp.org

 

FYI

A front page article in The New York Times describes how Americans who

no longer have trust in doctors are turning to alternative solutions

for health care issues.

" Soon, intuition and the personal experience of friends and family may

seem as trustworthy as advice from a doctor in diagnosing an illness

or judging a treatment. "

 

And who is to blame them when they've had their eyes opened to the

corrupt practices that have undermined the integrity of mainstream

medicine?

 

The public is wiser for being distrustful after they've learned that:

* doctors are " on the take " (they get paid to " seed the market " which

they pretend is post-marketing research);

* drug labels conceal the most serious side effects;

* the most potent therapeutic effect of widely prescribed psychotropic

drugs is the placebo effect;

* clinical trial reports in the most prestigious medical journals have

been shown to have been ghostwirttten--and therefore not credible;

* companies and the academic based physicians they contract, have

concealed the negative findings, publishing fraudulent claims of

" safety and effeicacy " ;

*doctors' " education " about the medicines they prescribe comes from

visiting cheerleaders--who've been hired by drug companies to serve as

sales reps.

 

--See: Gimme an Rx! Cheerleaders Pep Up Drug Sales, Nov. 28, 2005 at:

http://www.ahrp.org/infomail/05/11/28.php

 

The Times reports: " In recent years, people searching for something

outside of conventional medicine have increasingly turned to

naturopaths, herbal specialists who must complete a degree that

includes some standard medical training in order to be licensed,

experts say. Fourteen states, including California and Connecticut,

now license naturopaths to practice medicine. Natural medicine groups

are pushing for similar legislation in other states, including New York. "

 

" This straying from conventional medicine is often rooted in a sense

of disappointment, even betrayal, many patients and experts say. When

patients see conventional medicine's inadequacies up close - a

misdiagnosis, an intolerable drug, failed surgery, even a dismissive

doctor - many find the experience profoundly disillusioning, or at

least eye-opening. "

 

Haggles with insurance providers, conflicting findings from medical

studies and news reports of drug makers' covering up product side

effects all feed their disaffection, to the point where many people

begin to question not only the health care system but also the science

behind it. "

 

What's more, people are finding that the personal care and human

interaction they receive from non-traditional health care providers is

far more satisfying than what they experience when encountering a

doctor who has become a mere prescriber of high priced widely drugs

whose mechanism of action and risks with long-term use are either not

known to him / her--or the risks are undisclosed.

 

 

 

Contact: Vera Hassner Sharav

212-595-8974

veracare

 

THE NEW YORK TIMES

February 3, 2006

 

Being a Patient

When Trust in Doctors Erodes, Other Treatments Fill the Void

 

By BENEDICT CAREY

A few moments before boarding a plane from Los Angeles to New York in

January, Charlene Solomon performed her usual preflight ritual: she

chewed a small tablet that contained trace amounts of several herbs,

including extracts from daisy and chamomile plants.

 

Ms. Solomon, 56, said she had no way to know whether the tablet, an

herb-based remedy for jet lag, worked as advertised. Researchers have

found no evidence that such preparations are effective, and Ms.

Solomon knows that most doctors would scoff that she was wasting her

money.

 

Yet she swears by the tablets, as well as other alternative remedies,

for reasons she acknowledges are partly psychological.

 

" I guess I do believe in the power of simply paying attention to your

health, which in a way is what I'm doing, " said Ms. Solomon, who runs

a Web consulting business in Los Angeles. " But I also believe there

are simply a lot of unknowns when it comes to staying healthy, and if

there's a possibility something will help I'm willing to try it. "

 

Besides, she added, " whatever I'm doing is working, so I'm going to

keep doing it. "

 

The most telling evidence of Americans' dissatisfaction with

traditional health care is the more than $27 billion they spend

annually on alternative and complementary medicine, according to

government estimates. In ways large and small, millions of people are

taking active steps to venture outside the mainstream, whether by

taking the herbal remedy echinacea for a cold or by placing their last

hopes for cancer cure in alternative treatment, as did Coretta Scott

King, who died this week at an alternative hospice clinic in Mexico.

[Page A3.]

 

They do not appear to care that there is little, if any, evidence that

many of the therapies work. Nor do they seem to mind that alternative

therapy practitioners have a fraction of the training mainstream

doctors do or that vitamin and herb makers are as profit-driven as

drug makers.

 

This straying from conventional medicine is often rooted in a sense of

disappointment, even betrayal, many patients and experts say. When

patients see conventional medicine's inadequacies up close - a

misdiagnosis, an intolerable drug, failed surgery, even a dismissive

doctor - many find the experience profoundly disillusioning, or at

least eye-opening.

 

Haggles with insurance providers, conflicting findings from medical

studies and news reports of drug makers' covering up product side

effects all feed their disaffection, to the point where many people

begin to question not only the health care system but also the science

behind it. Soon, intuition and the personal experience of friends and

family may seem as trustworthy as advice from a doctor in diagnosing

an illness or judging a treatment.

 

Experts say that people with serious medical problems like diabetes or

cancer are least likely to take their chances with natural medicine,

unless their illness is terminal. Consumers generally know that

quackery is widespread in alternative practices, that there is

virtually no government oversight of so-called natural remedies and

that some treatments, like enemas, can be dangerous.

 

Still, 48 percent of American adults used at least one alternative or

complementary therapy in 2004, up from 42 percent a decade ago, a

figure that includes students and retirees, soccer moms and truckers,

New Age seekers and religious conservatives. The numbers continue to

grow, experts say, for reasons that have as much to do with increasing

distrust of mainstream medicine and the psychological appeal of

nontraditional approaches as with the therapeutic properties of herbs

or other supplements.

 

" I think there is a powerful element of nostalgia at work for many

people, for home remedies - for what healing is supposed to be -

combined with an idealized vision of what is natural and whole and

good, " said Dr. Linda Barnes, a medical anthropologist at Boston

University School of Medicine.

 

Dr. Barnes added, " People look around and feel that the conventional

system does not measure up, and that something deeper about their

well-being is not being addressed at all. "

 

Healthy and Dabbling

 

Ms. Solomon's first small steps outside the mainstream came in 1991,

after she watched her mother die of complications from a hysterectomy.

 

" I saw doctors struggling to save her, " she said. " They were trying

really hard, and I have great respect for what they do, but at that

point I realized the doctors could only do so much. "

 

She decided then that she needed to take more responsibility for her

own health, by eating better, exercising more and seeking out health

aids that she thought of as natural, meaning not prescribed by a

doctor or developed by a pharmaceutical company.

 

" I usually stay away from drugs if I can, because the side effects

even of cough and cold medicines can be pretty strong, " she said.

 

The herbal preparations she uses, she said, " have no side effects, and

the difference in my view is that they help support my own body's

natural capability, to fight off disease " rather than treat symptoms.

 

If these sentiments are present in someone like Ms. Solomon, who

regularly consults her internist and describes herself as " pretty

mainstream, " they run far deeper in millions of other people who use

nontraditional therapies more often.

 

In interviews and surveys, these patients often described prescription

drugs as poisons that mostly mask symptoms without improving their

underlying cause.

 

Many extend their suspicions further. In a 2004 study, researchers at

the University of Arizona conducted interviews with a group of men and

women in Tucson who suffered from chronic arthritis, most of whom

regularly used alternative therapies. Those who used alternative

methods exclusively valued the treatments on the " rightness of fit "

above other factors, and they were inherently skeptical of the health

care system.

 

Distrust in the medical industrial complex, as some patients call it,

stems in part from suspicions that insurers warp medical decision

making, and in part from the belief that drug companies are out to

sell as many drugs as possible, regardless of patients' needs,

interviews show.

 

" I do partly blame the drug companies and the money they make " for the

breakdown in trust in the medical system, said Joyce Newman, 74, of

Lynnwood Wash., who sees a natural medicine specialist as her primary

doctor. " The time when you would listen to your doctor and do whatever

he said - that time is long gone, in my opinion. You have to learn to

use your own head. "

 

From here it is a small step to begin doubting medical science. If

Western medicine is imperfect and sometimes corrupt, then mainstream

doctors may not be the best judge of treatments after all, many

patients conclude. People's actual experience - the personal testimony

of friends and family, in particular - feels more truthful.

 

To best way to validate this, said Ms. Newman and many others who

regularly use nontraditional therapies, is simply to try a remedy " and

listen to your own body. "

 

Opting Out

Cynthia Riley effectively opted out of mainstream medicine when it

seemed that doctors were not listening to her.

During a nine-year period that ended in 2004, Ms. Riley, 47, visited

almost 20 doctors, for a variety of intermittent and strange health

complaints: blurred vision, urinary difficulties, balance problems so

severe that at times she wobbled like a drunk.

 

She felt unwell most of the time, but doctors could not figure out

what she had.

 

Each specialist ordered different tests, depending on the symptom, Ms.

Riley said, but they were usually rushed and seemed to solicit her

views only as a formality.

 

Undeterred, Ms. Riley, an event planner who lives near New London,

Conn., typed out a four-page description of her ordeal, including her

suspicion that she suffered from lead poisoning. One neurologist waved

the report away as if insulted; another barely skimmed it, she said.

 

" I remember sitting in one doctor's office and realizing, 'He thinks

I'm crazy,' " Ms. Riley said. " I was getting absolutely nowhere in

conventional medicine, and I was determined to get to the root of my

problems. "

 

Through word of mouth, Ms. Riley heard about Deirdre O'Connor, a

naturopath with a thriving practice in nearby Mystic, Conn., and made

an appointment.

 

In recent years, people searching for something outside of

conventional medicine have increasingly turned to naturopaths, herbal

specialists who must complete a degree that includes some standard

medical training in order to be licensed, experts say. Fourteen

states, including California and Connecticut, now license naturopaths

to practice medicine. Natural medicine groups are pushing for similar

legislation in other states, including New York.

 

Licensed naturopaths can prescribe drugs from an approved list in some

states, but have no prescribing rights in others.

 

Right away, Ms. Riley said, she noticed a difference in the level of

service. Before even visiting the office, she received a fat envelope

in the mail containing a four-page questionnaire, she said. In

addition to asking detailed questions about medical history - standard

information - it asked about energy level, foods she craved,

sensitivity to weather and self-image: " Please list adjectives that

describe you, " read one item.

 

" It felt right, from the beginning, " Ms. Riley said.

Her first visit lasted an hour and a half, and Ms. O'Connor, the

naturopath, agreed that metal exposure was a possible cause of her

symptoms. It emerged in their interview that Ms. Riley had worked in

the steel industry, and tests of her hair and urine showed elevated

levels of both lead and mercury, Ms. O'Connor said.

 

After taking a combination of herbs, vitamins and regular doses of a

drug called dimercaptosuccinic acid, or DMSA, to treat lead poisoning,

Ms. Riley said, she began to feel better, and the symptoms subsided.

 

Along the way, Ms. O'Connor explained the treatments to Ms. Riley,

sometimes using drawings, and called her patient regularly to check

in, especially during the first few months, Ms. Riley said.

 

Other doctors said they could not comment on Ms. Riley's case because

they had not examined her. Researchers who specialize in lead

poisoning say that it is rare in adults but that it can cause

neurological symptoms and bladder problems and is often missed by

primary care doctors.

 

Dr. Herbert Needleman, a psychiatrist who directs the lead research

group at the University of Pittsburgh, said DMSA was the

pharmaceutical treatment of choice for high blood lead levels.

 

Researchers say there is little or no evidence that vitamins or herbs

can relieve symptoms like Ms. Riley's. Still, she said, " I look and

feel better than I have in years. "

 

Life and Death

 

Diane Paradise bet her life on the uncertain benefits of natural

medicine, after being burned physically and emotionally by

conventional doctors.

 

In 1995, doctors told Ms. Paradise, now 35, that she had Hodgkin's

disease. After a six-month course of chemotherapy and radiation, she

said, she was declared cancer free, and she remained healthy for five

years.

 

But in 2001 the cancer reappeared, more advanced, and her doctors

recommended a 10-month course of drugs and radiation, plus a marrow

transplant, she said.

 

Ms. Paradise, a marketing consultant in Rochester, N.Y., balked.

" I was burned badly the first time around, third-degree burns, and now

they were talking about 10 months, " she said in an interview, " and

they were giving me no guarantees; they said it was experimental.

That's when I started looking around. I really had nothing to lose,

and I was focused on quality of life at that point, not quantity. "

 

When she told one of her doctors that she was considering an

alternative treatment in Arizona, the man exploded, she said.

 

" His exact words were, 'That's not treatment, that's a vacation -

you're wasting your time!' " she said.

And so ended the relationship. With help from friends, Ms. Paradise

raised about $40,000 to pay for the Arizona clinic's treatment, plus

living expenses while there.

 

" I had absolutely no scientific reason for choosing this route, none, "

she said. " I just think there are times in our life when we are asked

to make decisions based on our intuition, on our gut instinct, not

based on evidence put in front of us, and for me this was one of those

moments. "

 

Cancer researchers say that there is no evidence that vitamins, herbs

or other alternative therapies can cure cancer, and they caution that

some regimens may worsen the disease.

 

But Ms. Paradise said that her relationship with the natural medicine

specialist in Arizona had been collaborative and that she had felt

" more empowered, more involved " in the treatment plan, which included

large doses of vitamins, as well as changes in diet and sleep

routines. After four months on the regimen, she said, she felt much

better.

 

But the cancer was not cured. It has resurfaced recently and spread,

and this time Ms. Paradise has started an experimental treatment with

an oncologist in New York.

 

She is complementing this treatment, she said, with another course of

alternative therapy in Arizona. She moved in with friends near Phoenix

and started the alternative regime in January.

 

" It's 79 degrees and beautiful here, " she said by phone in

mid-January. " Let's hope that's a good sign. "

 

For all their suspicions and questions about conventional medicine,

those who venture outside the mainstream tend to have one thing in

abundance, experts say: hope. In a 1998 survey of more than 1,000

adults from around the country, researchers found that having an

interest in " personal growth or spirituality " predicted alternative

medicine use.

 

Nontraditional healers know this, and they often offer some spiritual

element in their practice, if they think it is appropriate. David

Wood, a naturopath who with his wife, Cheryl, runs a large,

Christian-oriented practice in Lynnwood, Wash., said he treated

patients of all faiths.

 

" We pray with patients, with their permission, " said Mr. Wood, who

also works with local medical doctors when necessary. " If patients

would not like us to pray for them, we don't, but it's there if needed. "

 

He added, " Our goal here is to help people get really well, not merely

free of symptoms. "

 

That is exactly the sentiment that many Americans say they feel is

missing from conventional medicine. Whatever the benefits and risks of

its many concoctions and methods, alternative medicine offers them at

least the promise of affectionate care, unhurried service, freedom

from prescription drug side effects and the potential for feeling not

just better but also spiritually recharged.

 

" I don't hate doctors or anything, " Ms. Newman said. " I just know they

can make mistakes, and so often they refer you on to see another

doctor, and another. "

 

Seeing a naturopath, she said, " I feel I'm known, they see me as a

whole person, they listen to what I say. "

 

 

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