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ByLauranNeergaard TheAssociatedPress WASHINGTON Dr. Angelo Volandes remembers per- forming rib-cracking CPR on a frail elderly man dy- ing of lung cancer, a vivid example of an end-of-life di- lemma: Because his patient never said if he wanted ag- gressive care as his body shut down, the hospital had to try. He died days later. Years later, the Harvard Medical School researcher now tries to spur conversa- tions about what care pa- tients want during life's fi- nal chapter through videos that illustrate different op- tions. "This is about patient em- powerment," said Volandes, who describes his program in a new book aptly titled "The Conversation." Most Americans say they'd prefer to die at home, with treatment to free them from pain, but the presti- gious Institute of Medicine says the reality too often is unwanted care and not enough comfort. One main reason: Doctors have a hard time discussing dying and patients don't know what to ask. Now the institute is recommending changes in the health system to help patients — not doctors or circumstances — dictate their care, and it all starts with some straight talk. "These conversations should be part of a life cy- cle, not just at the end of life," said Dr. Philip Pizzo of Stanford University, who co-chaired the institute's panel that is holding meet- ings on how to implement the recommendations. "Re- gardless of whether an indi- vidual is choosing more or less, both ends of that spec- trum are important and we should honor preferences." Already some programs are under way to jump- start the discussions. Vi- talTalk trains doctors for emotional conversations such as whether it's time to stop cancer chemother- apy, and how to ask what patients value most for their remaining time. "Doctors know what they should do, they just don't know how to do it effec- tively," said VitalTalk co-de- veloper Dr. Anthony Back, a University of Washington oncologist. And health facilities can license Volandes' videos to show families what op- tions ranging from CPR to feeding tubes to hospice in- volve, before they talk with the doctor. For example, one video explains that if CPR is at- tempted, you also may be put on a ventilator — a tube down your throat that pushes air into your lungs, preventing eating or talk- ing. In a matter-of-fact man- ner, it shows health work- ers inserting that tube in a mannequin and, briefly, a real patient lying sedated and intubated. In carefully controlled studies, Volandes found patients were less likely to opt for aggressive end-of- life care after seeing the videos than if someone just described their choices. About 200 hospitals and other health facilities around the country use the videos. The biggest real- world test is going on now in Hawaii: The state's larg- est insurer has licensed the videos for use in every hos- pital, and in other health fa- cilities including primary care offices. Researchers are tracking the impact. "If one of our members makes a conscious decision that, 'I want to fight until my last dying breath,' we're supportive of that," said Hil- ton Raethel, chief health of- ficer of HMSA, the not-for- profit Hawaii Medical Ser- vice Association. "But we want that to be a choice you make as opposed to, it's something that's im- posed on you." These decisions are much more complicated than a checklist, said Dr. Diane Meier, an Institute of Medi- cine panelist and director of the Center to Advance Pal- liative Care at New York's Mount Sinai Medical Cen- ter. Conversations are critical because of the "it depends" factor. Maybe you're sure you won't want to be on a ventilator once your cancer becomes advanced. But say you catch a treatable pneu- monia in the meantime. Would a few days on a ven- tilator be worth it then? "Advance care planning is a process and people change their minds all the time," Meier said. "Those nuances are very customized, patient-spe- cific." Yet few medical schools train doctors in them. "The tendency of all health professionals, in- cluding me, is to just keep talking" when delivering bad news, said VitalTalk's Back, who calls it "explain- aholic syndrome." His program lets doc- tors practice how to stop and acknowledge patients' emotions, ask about what's most important to them, and then explore options that match those values. In addition to courses, Vital- Talk offers an app for doc- tors to use as a refresher be- fore a difficult conversation. Among the institute's recommendations are for the establishment of qual- ity standards and payment systems that encourage ad- vance care planning; Medi- care is considering reim- bursement for such plan- ning. Meanwhile, the insti- tute's Web site points fam- ilies to online resources — http://bit.ly/199Hgqe — and has created a public service announcement to educate consumers. Back in Honolulu, Lena Katekaru wasn't sure how much her 81-year-old fa- ther understood when an emergency room doctor, citing his frailty and other illnesses, recommended against aggressive care for his esophageal cancer. She remembered her mother dy- ing in an intensive care unit without the family having discussed her wishes, and didn't want a repeat of the uncertainty. A nurse showed Kateka- ru's father one of Volandes' videos, translated into his native Japanese, explain- ing treatment for pain and symptoms versus progres- sively aggressive care. Later, her father put his wishes in writing. "I don't want to choose for him," said Katekaru, who at 52 says she should consider these conversa- tions, too. "You don't want to burden your family." END OF LIFE Aspatientsfacedeath,docspushstraighttalkoncare THEASSOCIATEDPRESS Dr. Angelo Volandes films a patient at Straub Clinic and Hospital in Honolulu, for videos he develops that educate families about end-of-life care options, such as CPR. By Roxana Hegeman The Associated Press WICHITA, KAN. Kansas farmers are paying for ge- netic research to figure out exactly why some people struggle to digest wheat. The hard science is aimed at developing new variet- ies of wheat at a time when the gluten-free industry is worth nearly a billion dol- lars a year in the U.S. alone. The Kansas Wheat Commission is spending $200,000 for the first two years of the project, which is meant to identify every- thing in wheat's DNA se- quences that can trigger a reaction in people suffering from celiac disease, an auto- immune disorder in which eating even tiny amounts of gluten — comprised of nu- merous, complex proteins that gives dough its elastic- ity and some flavor to baked goods — can damage the small intestine. The only known treat- ment for celiac disease is a gluten-free diet free of any foods that contain wheat, rye, and barley. "If you know you are pro- ducing a crop that is not tol- erated well by people, then it's the right thing to do," said the project's lead re- searcher, Chris Miller, se- nior director of research for Engrain, a Kansas company that makes products to en- hance the nutrition and ap- pearance of products made by the milling and cereal in- dustry. Though celiac disease is four to five times more com- mon now than 50 years ago, only about 1 percent of the world's population is be- lieved to suffer from it, and just a fraction have been di- agnosed. But the gluten-free food business has skyrock- eted in the last five years, driven in part by non-celiac sufferers who believe they are intolerant to gluten and look for such products as a healthier alternative. Sales of gluten-free snacks, crackers, pasta, bread and other products reached $973 million in the U.S. in 2014, up from $810 million the previous year, according to a January re- port by the consumer re- search firm Packaged Facts, which analyzed the sales of hundreds of explicitly la- beled and marketed gluten- free products and brands at supermarkets, drugstores, and mass merchandisers. Understanding the causes of celiac disease and gluten intolerance is the goal of a lot of research around the world; Some fo- cuses on human diagnosis and treatment, and others have identified about 20 of the protein fragments in wheat that causes celiac re- actions. But no one has identified all of them, or bred a vari- ety of wheat that is safe for celiac sufferers to eat. "We are hoping to be one of the first to establish this comprehensive screening of reactive proteins in wheat," Miller said. The research began in July at the Wheat Innova- tion Center in Manhattan, Kansas, and remains in its early stages, with research- ers extracting proteins from seeds of various varieties of wheat. A later step will be combining the proteins with antibodies produced by the human immune sys- tem to test for reactions. He also plans to examine the wild relatives of wheat as well as modern varieties, and will tap into a Kansas wheat variety repository that dates back to the 1900s in hopes of finding a vari- ety — perhaps one that fell out of favor among commer- cial farmers — that might already be low in reactivity for celiac sufferers. Researchers hope to use that variety to develop a gluten-free wheat using tra- ditional breeding methods. An expert on celiac dis- ease who reviewed Miller's plan online worries that it may prove "too simplistic," and fail to identify all the toxic sequences that can trigger a celiac reaction. Armin Alaedini, assis- tant professor of medical sciences at Columbia Uni- versity and a researcher at the New York-based school's Celiac Disease Center, said the project may end up with a less toxic wheat product that isn't completely safe for all celiac disease patients. "After all this effort, this product that is coming out ... is unlikely to be supe- rior in terms of nutritional value or baking properties and taste to the gluten-free products that are already on the market," Alaedini said. The medical advisory board for the Celiac Dis- ease Foundation, a non- profit based in Woodland Hills, California, could not reach a consensus on the vi- ability of Miller's research. But the organization's CEO, Marilyn Geller, is en- couraged. Her son had been sick his entire life before being diagnosed with celiac dis- ease at age 15, Geller said, and his father also was later diagnosed. Since the disor- der is genetic, her grand- children will be at risk of getting it. If these research efforts can keep celiac disease in the public eye, more doc- tors will be aware of it and more federal research dol- lars may flow, she said. Many people with the disease would like to "eat actual wheat, with the properties of wheat that make the bread nice and fluffy," she said. "The idea of having a variety of wheat that they could eat that has those wonderful wheat-like prop- erties would certainly be very interesting for them." CELIAC DISEASE Kansas farmers fund genetic research to breed gluten-free wheat THE ASSOCIATED PRESS Chris Miller, senior director of research for Engrain, stops for a photograph during a tour of his research facility at the Wheat Innovation Center in Manhattan, Kan. 40 Chestnut Avenue Red Bluff 530-330-1096 BRING BALANCE TO YOUR BODY Bring balance to your LIFE Pilates and Yo ga Studio Formoreinfo www.healthybalanceredbluff.com (530) 529-1220 100 Jackson Street Red Bluff NewMonthlyRates $28 to $32 Call for details Spring Coupon Special 750DavidAvenue,RedBluff•527-9193• www.tehamaestatesretirement.com findusonFacebook *lease required - new residents only Tehama Estates The areas #1 Senior Housing Provider SeniorRetirementApartments TehamaEstatesProvides: •3DeliciousHealthyMealsEachDay • Daily Housekeeping • 24 Hour Staffing, 365 Days of the Year • Utilities Included (except phone & cable) • Transportation • Fun Activities and Events $400 off Your Monthly Rental Rate For 6 Months * Serving Red Bluff for 30 years Look to us for Expert Eye Care. 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