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.
|
