Nutrition and Cancer Care — Show Them the Money
By Sharon Palmer, RD
Today’s Dietitian
Vol. 7 No. 10 P. 44

Like all healthcare, reimbursement for nutrition services in oncology means proving outcomes.

Dietitians devoting their lives to cancer care seem to all be saying the same thing these days—nutrition is the missing link. “Nutrition is still not yet part of comprehensive cancer care. There are exceptions, but it is certainly not universal,” says Diana Dyer, MS, RD, author of A Dietitian’s Cancer Story (Swan Press). “It’s pretty much across the board that cancer centers can use more dietitians. I’d like to see all comprehensive cancer centers have a nutrition department with dietitians to follow all patients through treatment and collaborate with multidisciplinary clinics,” says Megan Waltz-Hill, MS, RD, dietitian at University of Wisconsin Hospital & Clinics. Since depletion of nutritional reserves and significant weight loss can lead to an increased risk of morbidity, decreased chemotherapy response, and shorter survival in patients with cancer, it’s hard to imagine that there’s a dietitian crisis in cancer care.1

Reimbursement Woes
But the ugly truth behind the inadequacy of nutrition care in oncology can be traced to the “show me the money” factor. As in any field, someone has to cough up the money to pay for nutritional services. “The No. 1 challenge for dietitians in cancer care is reimbursement for services,” says Cindi Thomson, PhD, RD, assistant professor at the University of Arizona. “Everyone looks at the bottom line,” says Tanya Lesinski, RD, CNSD, of the West Michigan Regional Cancer and Blood Center.

So where’s the logjam on the stream of reimbursement? “At this point, it literally takes an Act of Congress to get the reimbursement pathway in motion,” says Dyer. The new legislation, The Medicare Medical Nutrition Therapy Act of 2005, is currently pending in Congress (S604, HR1582) to facilitate coverage of medical nutrition therapy for cancer by Medicare once evidence shows the benefit or cost savings.

“It takes Medicare and the insurance companies, but it’s difficult to prove outcome. In diabetes, you can see an outcome and track it. With cancer, the real outcome to measure is quality of life. Did nutrition help them live longer? Maybe not,” says Sandra Luthringer, RD, LDN, of The Regional Cancer Center in Erie, Pa.

“I know dietitians who have lost jobs due to funding. Some dietitians complain of a lack of recognition, of not being part of the team,” says Bonnie Dixon, RD, LD, lead nutritionist at Georgia Cancer Specialists. “We need to realize that it’s not all about getting paid for our services, but making our services so important they don’t mind. There are a lot of vital positions in practices that don’t get directly reimbursed.”

“If we had reimbursement for our services, we could have many more dietitians in our center,” says Waltz-Hill. Adds Luthringer, “Most free-standing cancer centers don’t have support staff because reimbursement is not available for the service.”

Getting the Job Done
Many cancer centers are depending on dietitians from the hospital across the street to jog over for consults in their spare time. “One of the standards for community cancer centers is that a dietitian should be available to patients who need nutrition care. Available and on site are two different things,” says Luthringer. Lisa McDowell, MS, RD, who works at St. Joseph Mercy Hospital in Ann Arbor, Mich., comments, “We cover the comprehensive cancer side. We have a flexible staffing model. We deploy where the consults are.”

Even cancer centers with dietitians on staff may find themselves bogged down with too many patients and inadequate staffing. When Luthringer polled oncology dietitians in the Oncology Nutrition Dietetic Practice Group (ON DPG) about the roadblocks that prevented them from seeing all their patients, the No. 1 barrier was time. “My biggest challenge is having enough time to see all the patients [who] could benefit from my service,” says Luthringer, who can’t possibly see all 300 people who come into the building every day. Like many oncology dietitians, she has developed a nutrition referral system that screens for risk factors and allows for timely dietitian consults.

“One of the biggest challenges is getting to patients fast enough. We’re often brought into the picture later in admission or after the patient has become malnourished. Many patients slip through the cracks,” says McDowell. Dyer adds, “Everything is reactive. There is very little proactive unless it is patient-initiated.”

Who’s Giving Nutritional Care?
In a world that finds 18 year olds at health food stores dishing out nutritional advice to cancer patients, it’s not comforting to find a shortage of dietitians in cancer centers. In a survey presented at the American Dietetic Association Food & Nutrition Conference & Expo 2003, Luthringer reported that of 74 surveys sent to outpatient community cancer centers, 20 responded. Of those 20, only eight reported a dietitian on staff (full-time or part-time), six reported a consultant or per-diem dietitian, and six reported no nutritional services provided. Only 14% of the National Cancer Institute’s 37 comprehensive cancer centers provided nutritional counseling to posttreatment cancer patients.2 If dietitians aren’t around to provide nutrition services, who’s doing it?

Often nurses and doctors are struggling to do the best they can to provide nutrition information to their patients.

With this in mind, Luthringer coedited the book Nutritional Issues in Cancer Care (2005), published by the Oncology Nursing Society. “Not every cancer center or doctor’s office has a dietitian. This book, written by dietitians and nurses, is a guide for healthcare professionals that would address nutrition,” says Luthringer.

Nutrition-Savvy Cancer Patients
Most oncology dietitians wholeheartedly agree that with the advent of the Internet, many cancer patients are extremely well-versed on nutrition, even if some of their information is incorrect. “Dietitians need to realize that most people believe that diet plays a role in their cancer. Most will look for resources on diet. It is empowering for clients,” says Thomson. “As a group, our patients are very interested in nutrition,” says Gretchen Garlow, RD, of the Long Island Cancer Center at Stony Brook University Hospital.

Faced with a life-threatening disease, more and more cancer patients are turning to dietary supplements. Many oncology dietitians report that they routinely find patients bringing in bags of supplements to sort through with the dietitian—one of their major missions in seeking out nutritional advice. “‘Should I be using supplements?’ is always a question on their minds. You have to keep up to date with the news,” says Dixon. “I think part of the next big job is just sorting through it. There’s so much information that is confusing to them.” Thomson agrees: “There’s so much information overload, dietitians need to step up.”

“After they’ve seen the whole gauntlet of providers, they just want to know what to eat and how to eat. Dietitians can help them on a mouth-by-mouth, meal-by-meal basis. They want a safe haven,” says Dyer.

Think Out of the Box
Today oncology dietitians are finding that it takes much more than beautifully written nutritional assessments to pave the way in cancer care. In an era that finds dietitian’s salaries considered overhead, dietitians need to think up inventive ways to justify their paychecks. Some have grown tired of hearing about the comprehensive approach to cancer that doesn’t include nutrition and have taken matters into their own hands. From writing persuasive letters to administrators, to finding wealthy patrons to fund dietitian wages, oncology dietitians are pushing the envelope to provide nutrition in cancer care.

“We have subsidized salaries of dietitians through a gift,” reports Thomson, who notes that they are three years into a generous gift that will support the dietitians for 10 years at the Arizona Cancer Center. “Dietitians need to be part of the multidisciplinary team and be visible. Patients don’t have time to be advocating our services,” adds Thomson, who reports that the dietitians at Arizona Cancer Center went to administration and asked to put a nutrition section on the cancer center Web site.

Lesinski was employed at the local hospital and consulting at the West Michigan Regional Cancer and Blood Center weekly when she drafted a proposal to work directly for the cancer center. “Originally the nursing staff handled the nutrition issues. Our oncologist was being inundated with dietary supplement questions. He needed a nutrition professional,” reports Lesinski. “I put together a long list of everything I could do. The oncologist was so proactive; he was determined to make it work.”

Dixon reports, “The CEO of our company was very dynamic, always thinking out of the box. He looked at the entire person. We had backing from the get go. They started with one dietitian and now there are five dietitians.” Garlow reports that at Long Island Cancer Center there are 1.6 full-time employees dedicated to nutrition since 2003, enough to provide good coverage for its patients. Waltz-Hill found a similar experience and urges dietitians to “explain to the doctors that you don’t have time sometimes due to high patient load and remind them about how important nutrition is.”

“Dietitians need to be the ones talking to doctors, administrators, and patients, promoting and marketing services. The last thing you want to hear is that a dietitian is hired and nobody makes an appointment,” says Dyer, who stresses that marketing needs to continue after dietitians are placed in cancer care.

“Think if a doctor could see four more patients during the day because of the time the dietitian saved him,” notes Dyer, who suggests that dietitians can take all the routine nutrition questions about things such as diarrhea and supplements off the doctor’s hands. “In order to break into cancer care, prove that you make a difference, that you save money in the long run because nutritional symptoms are caught early,” advises Lesinski.

“Patients have a choice where they go. Administration could be marketing the dietitian’s value to their facility’s comprehensive cancer care,” says Dyer. “Our doctors decided to continue with dietitians. It’s great customer service. How cool to have your own dietitian to call and answer your questions,” adds Dixon.

ON DPG Support
Cancer dietitians can’t stop praising the benefits of ON DPG. “The DPG is a great network of dietitians. The listserv is phenomenal. You can ask the simplest things and within minutes people will e-mail back with the information,” says Luthringer, who is a founding member and past chair of ON DPG. “It is difficult to find training for oncology. The DPG is a great place for it. You can talk to people who’ve been doing it for years.” Lesinski agrees: “I reap tremendous benefits from ON DPG. When I first began the position, I didn’t have a lot of experience in oncology and I had to create a brand new position. I learned so much from the best and brightest dietitians in the country.”

Kathryn Hamilton, MA, RD, chair of ON DPG, reports that in addition to an active electronic mailing list, a first-rate newsletter, and an informative Web site (www.oncologynutrition.org), member benefits this year also include free access to Suzanne Dixon’s Cancer Nutrition Information service through the Web site. “We want to help educate dietitians in cancer centers. A primary goal for my tenure as chair is to create a cohesive oncology nutrition community,” adds Hamilton. The Clinical Guide to Oncology Nutrition published by ON DPG should be available in 2006. And ON DPG is also working toward certification of oncology dietitians, which many dietitians eagerly anticipate.

Tracking Outcomes
Most dietitians agree that producing data to support positive patient outcomes related to nutritional management in cancer care may help loosen the purse strings. “Nobody has pulled together the little bit of research on treatment response or quality of life outcomes,” says Dyer, who suggests that dietitians should be presenting this data to administrators. “This is what it’s going to take to get nutrition on board and appropriately staffed.”

“One of the best things we can continue to do is outcome research to show the benefit of nutrition,” says Lesinski, who has done retrospective chart studies finding positive outcomes. Garlow’s facility has been collecting data to demonstrate how nutrition plays a role with her cancer patients.

A Time for Cancer Prevention
During an age that finds 30% to 40% of cancer deaths linked to nutrition, dietitians are poised to save lives.3 Research is starting to point to the importance of lifestyle change in cancer prevention. The Women’s Intervention Nutrition Study (WINS) recently announced that breast cancer survivors who reduced the amount of fat in their diets were significantly less likely to experience a recurrence of breast cancer over the next five years.4 Cancer survivors are at increased risk for progressive disease, but also for second primaries—osteoporosis, obesity, cardiovascular disease, diabetes, and functional decline. With 64% of cancer patients surviving more than five years beyond diagnosis, there are many opportunities for dietitians to promote lifestyle changes.5

“I don’t think historically dietitians are spending enough time on prevention. In my experience, the dietitian gets paged when they’re sending the patient home, they need a feeding tube, or the patient has lost weight,” says Thomson. “There are about 12 million survivors of cancer. Most resources are for advanced disease. We need to look at survivorship.”

“Patients are so hungry for information once they’ve been put into remission. This is a growing area for us,” says McDowell, who gives the American Institute for Cancer Research (AICR) educational materials to her patients. A breast cancer survivor herself, Dixon also sees survivor issues as a big role in the dietetics profession. “We have the ability to empower them with tools that may actually help them prevent a reoccurrence,” says Lesinski.

A Rewarding Career
In spite of the hurdles, oncology nutrition offers many rewards for dietitians. “I absolutely love it; it is the most rewarding field I have experienced in my career. I get to know my patients and families and see the impact of care in the patient,” says Lesinski. “Most people think that terminal patients can be difficult to work with, but in reality, I find it the opposite. It’s humbling. The patients are so appreciative of every little tip and suggestion,” says Luthringer. “You do feel like you’re contributing to society.” Dixon adds, “If you want to do a 9-to-5 job, you can find something easier. But there are lots of people who are wonderful in this field. It is part of their nature.”

Part of the reason that oncology nutrition is so special is that dietitians end up there due to personal experiences. Dyer shares her cancer recovery journal in her book and on her Web site (www.cancerrd.com). The proceeds from her book sales are donated to the Diana Dyer Cancer Survivors’ Nutrition and Cancer Research Endowment at the AICR to fund research focusing on nutrition strategies after a cancer diagnosis—either during treatment or recovery—to optimize the odds for long-term survival and enhanced quality of life.

The Future for Dietitians in Cancer Care
Does the future look rosier for dietitians in the field of cancer care? “I feel optimistic for the role of dietitians in cancer care. I believe reimbursement will change. Dietitians have to be proactive in making changes,” says Thomson. “The WINS study has fairly compelling data. Dietitians need to be ready to roll. They need to help translate science into practice.”

“The beauty of nutrition in this particular field is that it helps quality of life, and based on select recent studies, quite possibly prognosis,” says Hamilton. “One really cool aspect of this group is that members are practicing in a variety of settings on the continuum of oncology care—prevention, treatment, and hospice.” Dixon comments, “I think you have to be very flexible and show every day what you can do by stepping out of the box and doing things not in your comfort zone.”

“The goal is to have nutrition as much a part of comprehensive cancer care as radiation and chemotherapy. In addition to dietitians providing nutrition services for patients undergoing cancer therapy, many cancer survivors will have an increased risk of chronic problems secondary to their cancer treatment,” says Dyer. “My Web site can’t provide individual, in-depth, proactive information needed by patients. In an ideal world, when all cancer treatment facilities are appropriately staffed with dietitians working with patients from the day of diagnosis forward, there would be no need for the generalized information provided on my Web site. I look forward to that time.”

— Sharon Palmer, RD, is a freelance journalist in Southern California.

Special thanks to Diana Dyer, MS, RD, for her assistance with this article.

References
1. Slaviero KA, Read JA, Clarke SJ, et al. Baseline nutritional assessment in advanced cancer patients receiving palliative chemotherapy. Nutr Cancer. 2003:46(2):148-157.

2. Tesauro GM, Rowland JH, Lustig C, et al. Survivorship resources for post-treatment cancer survivors. Cancer Pract. 2002;10(6):277-283.

3. The Diet and Cancer Link, AICR. Available at: http://www.aicr.org/diet.html

4. AICR Statement on Wins Breast Cancer Study. May 16, 2005. Available at: http://www.aicr.org/press/pubsearchdetail.lasso?index=2021

5. Demark-Wahnefried, et al. Riding the Crest of the Teachable Moment: Promoting Long-Term Health After the Diagnosis of Cancer, JCO. July 25, 2005.