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Health stores Cancer patients seeking complementary and alternative medicines from Oahu health food stores can fall into a "trap of hope," a Hawaii research project shows.
rapped on bad
cancer advice
Study critical of 'trap
of hope' set by well-meaning
health food stores
Cancer battles led Galloway to open health store
By Helen Altonn
Star-BulletinPeople working in the stores often provide empathy and comfort to patients that may be missing in their doctors' offices, but they also may make potentially dangerous recommendations, researchers found.
The study, published in the August issue of the Archives of Family Medicine, has generated widespread interest because of its novel look at "the supply side of the complementary and alternative medicine (CAM) phenomenon."
The study was conducted by Carolyn Cook Gotay, associate researcher at the Cancer Research Center of Hawaii. She was assisted by Daniella Dumitriu, who visited 40 Oahu health food stores in the summer of 1998, posing as the daughter of a breast cancer patient.
"Everyone knows alternative and complementary medicines are widely used," Gotay said, "but no one has really looked at it from the perspective of the health food store."
STUDY RESULTS ONLINE
Most products haven't been investigated because they're not regulated by the Food and Drug Administration, she said.
"Information is absent in literature but cancer patients sometimes are really desperate, looking for anything that will help them," she said.
Some recommendations "could be quite dangerous, and some could do a lot of help," Gotay said. "In the absence of knowledge, it's quite scary."
Dr. Jane Starn, director of the University of Hawaii School of Nursing's Health and Healing Center, said patients often feel their full needs aren't being met by the traditional health care system.
As researchers found, some health food stores provide that "human caring," she said. "If our traditional health care system addressed mind, body and spirit as an integrated whole, I think peoples' needs would be met."
Certified as a holistic nurse, Starn advocates a team of providers and therapists using an integrated approach, including energy and herbal medicine, imagery and other mental techniques, as well as physical and curative methods of traditional western medicine.
"We need a major overhaul in the system ... integrating with the heart and soul of the patient as well as the physical or mental needs," she said. "We're in a major culture shift here."
Studies are under way across the country on alternative products and practices with funding from the National Center for Complementary and Alternative Medicine, established by the National Institutes of Health, Starn said.
In the Hawaii study, Gotay "was struck that some of the (health food) retailers are very responsible and kind and tried their best to help patients."
Some were reluctant to answer questions or give advice, saying they weren't knowledgeable about cancer or were concerned about the legality of giving advice. One worker discouraged use of herbs or natural remedies for cancer, saying it requires "heavy duty medications."
Personnel in some stores provided advice or references to literature and Internet sources or suggested lifestyle changes such as diet, exercise and prayer.
Workers in four stores didn't recommend any products but 38 different products were recommended for breast cancer in the other 36 stores surveyed. Suggestions "drew on traditional healing, scientific and pseudo-scientific rationales."
Shark cartilage and oil were the most popular items. Plant-based products, particularly those taken as tea, and dietary supplements also were commonly suggested.
"Immune-boosting" was the most frequent reason cited for selecting complementary and alternative products.
The study pointed out that some products have significant toxic side effects, such as shark cartilage, which has been associated with hepatoxicity, nausea, fever, dizziness and other problems.
Other products, including some dietary supplements, may counteract benefits of conventional cancer therapies, it said.
Also, there are no quality control standards for herbal supplements, resulting in inconsistent dosages and the potential for contamination, it said.
Since doing the study, Gotay noted, complementary and alternative products have become even more widely distributed.
"The phenomenon of cancer self-care, in consultation with retailers, has emerged from underground and can be found at the mall and corner grocery," the researchers reported.
Costs also are "highly variable and far from trivial," they said.
Some therapies "have proof behind them, scientific studies," Gotay said.
Acupuncture is probably effective for different aspects of pain, and yoga and meditation may be helpful in reducing distress and anxiety, she said.
However, a well-controlled clinical trial sponsored by the National Cancer Institute in the past year showed shark cartilage made no difference to cancer patients, she said.
She said investigators at Hawaii's cancer research center have a lot of interest in looking at some complementary agents, particularly traditional medicine among ethnic groups that may have promise, such as Chinese herbs.
It was interesting that many health food stores use scientific terms and scientific-looking papers to support sales of products and therapies that weren't very scientific, Gotay said.
"Many times we think in the scientific world that patients are turned off by science and skeptical of scientific research," she said.
The study shows researchers can make a difference for patients by providing information to help them sort out health food claims, she said.
Being told that she had terminal cancer and only four months to live changed Jean Galloway's life. Now, 13 years later, she's trying to help others. Cancer battles led
Galloway to open
health storeHelen Altonn
Star-BulletinShe and her husband, Bob, own Nature's Sunshine Products Center, 50 South Beretania.
"It's not really a health food store," she said, explaining they distribute nutrition products from a 26-year-old company.
She also has shark's cartilage, products for the immune system, seaweed, and other popular complementary and alternative health items.
Galloway said she got into the business accidentally as a cancer victim.
She was treated for gastritis for two years until she was diagnosed with stomach cancer and given four months to live.
The pain was so bad after four months she had her stomach removed, she said.
"I didn't know whether I was going to live or die the night of my surgery," she said. "It was very traumatic. I don't want anyone to go through what I did."
Instead of chemotherapy, she said her husband, a naturopath doctor, took her to a cancer cancer clinic in San Diego for holistic treatment: "Vitamin C therapy, diet, psychology, being optimistic, imagery and all that."
Eight months later, she had breast cancer. Again, she was treated holistically, she said.
"Last year, everything was clear. This year, too, everything is clear," she said. "I had breast cancer and stomach cancer. I don't have a gall bladder and no appendix. I'm 73 and I just feel fine."
She started sharing her experiences in her husband's former real estate office eight years ago and "it became a business, which I hadn't intended it to be."
Her husband has his own experiences to share: eight heart attacks and diabetes. He said he had a heart attack on Christmas Eve three years ago in Las Vegas and was unconscious three days.
Galloway said she likes to sit and talk to customers.
"If I can help one person, it's more important to me than making one sale," she said. "When I was sick, I didn't know where to turn. People loaded me with all kinds of stuff ...
"Every man and his brother seems to be on a health kick now, opening a store and selling. The bad part about a lot of these health food stores is they just sell anything for money. They get things that aren't pure.
"I feel good about all the products we sell here," she said. "When a person has a critical situation, it's very important that they take something really good, that's quality, because it's life or death."
But she said, "I'm not practicing medicine. We never say 'get off doctors' medication.'
"We need doctors, but they scare the peediddly out of you," she said. "You don't know where to turn.
"Sickness and health have only a thin line. Prevention is the key. I can't emphasize that enough. People are funny, like me. If I don't get a death sentence, I just don't get excited."
Doctors and other health providers could learn something from health food stores about how to treat patients, a young researcher suggests. Patients seek empathy
that doctors often
don’t provideHelen Altonn
Star-BulletinSome of the stores "spooked me a little," said Daniella Dumitriu, who graduated this year from the University of California, Santa Barbara. "But there was something special about the people in these stores."
Dumitriu was a Hawaii Pacific University undergraduate student with psychosocial oncology research experience when she visited 40 Oahu health food stores offering products for breast cancer patients. She assisted Carolyn Cook Gotay of the Cancer Research Center of Hawaii with the 1998 study.
In her report, Dumitriu described two main kinds of health food stores: those acting as retailers and those acting as health providers.
"It is the latter group that we should be especially concerned about," said Dumitriu, who pretended to have a mother with breast cancer.
She said stores acting as health providers "seemed more dimly lit; their products were more haphazardly arranged, and there was more clutter with posters and the like.
"At times, these stores spooked me a little, and more than once I felt uncomfortable enough to want to leave the place as quickly as possible."
But if her situation had been real, she said, "I might have easily fallen into their 'trap of hope.' "
She said the strength of the people working in the stores "lies in their engagement with their customer's narrative. These people readily share their own stories and listen to others attentively. When they speak, they seem to speak from the bottom of their heart.
"We are all inclined to listen to people who empathize with us, people who seem to speak honestly," she said. "This is particularly true if we have been disappointed in the past, an almost universal experience among cancer patients seeking complementary and alternative medicine."
In one store, Dumitriu said, a salesman "brought up the death of my supposed mother. I remember leaving the store with a lump in my throat, even though before I left, he had managed to 'convince' me that his products would very likely help her."
She said the experience taught her that conventional medicine must not only be able to educate patients but "be able to instill in them the same kind of comfort and trust that CAM (complementary and alternative medicine) providers aim to provide ..."
"Perhaps it is time for health providers to look for a new vision -- one that retains the objectivity of science when it comes to things like promoting and prescribing medicine, but at the same time adopts a more subjective style when it comes to dealing with the human being behind the patient," she said.