[CO-CURE] NYT: When Trust in Doctors Erodes, Other Treatments Fill the Void

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Being a Patient

When Trust in Doctors Erodes, Other Treatments Fill the Void

By BENEDICT CAREY

THE NEW YORK TIMES

February 3, 2006

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

January, Charlene 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. , 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. 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. , 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 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.

, a medical anthropologist at Boston University School of Medicine.

Dr. 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. '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. , 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

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. 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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