Why CAM?

Today’s front page of the NY Times holds a fascinating article on why patients turn to CAM therapies.  While not specifically addressing children’s health, I suspect many families turn to alternatives for their kids for the same reasons.  So much is about trust and communication.  I encourage you to read on, and send me your comments.

The New York Times

 

   

 

      

       

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February 3, 2006

Being a Patient

When Trust in Doctors Erodes, Other Treatments Fill the Void

 

 
 

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.

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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