When Nick Escobedo DNP, RN, OCN, NE-BC, director of Inpatient Oncology at Houston Methodist Hospital, started his nursing career, he didn’t expect to land in oncology nursing. During May’s recognition of Oncology Nursing Month, Escobedo says the career has offered distinctive opportunities for personal and professional growth.
“I went into a basic acute care setting right out of nursing school because I wanted to get a good, solid foundation for myself in practice,” Escobedo, a former president of the Oncology Nursing Certification Corporation, says. But the learning process opened up new, and appealing possibilities. “I had an opportunity to learn the skill of chemotherapy,” he says, “and the more I got to learn about it and spend time working with patients, I quickly learned this specialty was for me, and I wanted to do that full time. It chose me.”
What sets it apart from the science and the practice part of nursing, he says, is that cancer affects every body system. Oncology nurses treat patients through a span that lasts from cancer diagnosis to remission or to end of life.
“I got to use my critical thinking skills, and I got to have knowledge of all the latest and greatest therapies available,” he says. Escobedo, a dedicated lifelong learner, says it’s imperative that he stays on top of understanding new technology and the range of cancer drugs and treatment options available to patients and the safest ways to administer them.
Thankfully, oncology nursing is very collaborative, he says, and so nurses work with physicians, frontline providers, therapists, chaplains, nutritionists, clinical pharmacists, and volunteers to understand how the different pieces help drive the care of a patient. Escobedo says a nurse might check in with a clinical pharmacist to find out more about a particular drug to learn about interactions, how a patient might respond to it, and how to use it safely.
Additional education is essential for oncology nurses, he says. “My journey toward certification was big,” he says. “That was one of my ways at looking at my competence as a clinician, to say I was an expert in the care of oncology patients. So my journey to pursue that certification and have knowledge to be successful was key. I’m a big advocate for certification.”
To balance the intensity of understanding the drugs and treatments used for cancer, Escobedo says the relationships oncology nurses develop with their patients is special. “You develop long-term connections with patients and their family members,” he says. “They give so much of themselves.”
Those strong connections can help nurses and patients through the celebrations of successfully completing cancer treatment or the more difficult prognosis or outcome. “This is very hard work,” says Escobedo. “The reward is that we get to do that work, but we need to balance that with resilience. This is tough work and we have to promote and champion a little of that balance. We try to look at the celebrations that happen.”
The success stories are uplifting and have a lasting impact on nurses. “We hear from patients who were treated years ago, and they come back to check in,” he says. Patients relay news of celebrating weddings and anniversaries and the arrival of children and grandchildren. Some have even paid it forward and after being treated for cancer, have embarked on fundraising campaigns to help others.
“Our patients push us to have that drive,” he says, “And we see lots of really good outcomes.” Patients can go through treatment that is long term and so being able to go through the process with them is something oncology nurses find so rewarding, says Escobedo.
Escobedo encourages nurses who are interested in exploring oncology nursing to find a way. “If you think you could be good at it, why don’t you try it?” he says. Find good mentors and be sure to seek out projects and opportunities that will get you out of your comfort zone. “Nurses don’t get lots of oncology nursing experience through training or nursing programs,” he says. “This is a full and rewarding specialty.”
In January 2009, the Maricopa Integrated Health System (MIHS) staged the grand opening of the Refugee Women’s Health Clinic in Phoenix, Arizona with Dr. Crista Johnson, MD, FACOG as the founding medical director. It is believed to be the only such clinic in the U.S. specializing in obstetrics and gynecology for refugee women from Africa, Asia and the Middle East.
“What was striking,” said Dr. Johnson, “was the language, the cultural barriers and the stress the women experienced when they would come to the hospital. The clinic will be an oasis to the community because there will be trained staff, knowledgeable regarding care services, resources, and specialized information who understand the patients better, and are able to facilitate a positive patient experience during their hospital contact and even in their homes.”
“These people,” Dr. Johnson continued, “are called navigators and they include nurses, public health workers, lay workers and others who would serve as a resource guiding, interpreting, communicating, facilitating and helping the refugees through the often times complicated and unfamiliar processes in obtaining satisfactory health care services.”
In the case of the refugee, who most know very little about seeing a doctor, or receiving clinical treatment, or home care of any sort and are also totally lacking in exposure to allied health services. But the engagement of navigators to improve certain service outcomes, and ultimately access to services, added a dimension that has made the service provider a key contributor to the improvement of patient satisfaction.
Duke Health in 2011 launched a robust and credible initiative using a class of employees as navigators who would serve as a resource to patients who because of cultural, economic, historical life experiences, or other reasons needed assistance in facilitating their engagement with the healthcare provider.
“The mission of the intervention,” said Dr. Angelo Moore, PhD, Assistant Director and Program Manager for Community Outreach, Engagement, and Equity (COEE) with Duke Cancer Institute, “was to be part of a highly visible community overall strategy to achieve care delivery that was equitable, culturally appropriate, and timely. The desired result would contribute to improved community health, higher performance outcomes and patient satisfaction.” The mechanism that would be employed is referred to as patient navigation. This is a concept and a process first introduced in 1990 by Dr. Harold Freeman a surgeon who saw the need for a resource for his cancer patients in Harlem Hospital, New York and who were predominantly African American women.
Dr. Freeman, who now oversees the operations of the Harold P. Freeman Patient Navigation Institute in New York, describes navigation as an individual intervention to help overcome barriers due to systemic reasons. “Patient navigation is what a person does,” says Dr. Freeman. However, the type of patient navigation that is employed is based on the education, skill set, scope and who is being served. In the market-place, and since the launching of the concept, several different titles have emerged such as Nurse Navigator, Resource Navigator, Community-Facing Navigator, Clinical Navigator, Non-Clinical Navigator, Lay Navigator. There is now an ongoing effort to harmonize these titles around a common set of descriptors common to the role and purpose of navigation.
Foundational to the role and purpose of navigation is the elimination of barriers or impediments.
What types of impediments are these? Examples of some of the frequently encountered barriers that may be eliminated through patient navigation: Financial barriers (including uninsured and under insured); communication barriers (such as lack of understanding, language and/or cultural competency), medical system barriers (fragmented medical system, missed appointments, lost results); psychological barriers (such as fear and distrust); other barriers (such as transportation and need for childcare).
Dr Freeman’s interest and desire to tackle the high percentage of African American women who were referred to him for diagnosis and treatment, was peaked when he saw that they were in the third and fourth stages of the disease of cancer. He took note that these women were also poor economically and lived very marginal lives, the circumstances that would impact their access to care. Dr. Freeman knew from available data that white women had a lower cancer morbidity rate. He decided to conduct an investigative approach to identify, if possible, the root causes of this phenomenon.
One of the core derivatives of his work was the description assigned to the title “patient navigator.” A patient navigator is a healthcare professional who proactively guides patients through the healthcare process. They are responsible for ensuring that the healthcare provider’s system met the needs of the patient as best as possible. To that end, patient navigators spend their time communicating with patients and their families and as an interface between the patient and the provider. They engage patients by describing the relevant options, the true nature of their illness, what to expect during the treatment process, and what their recovery process will be like. They may also need to identify what are the patient’s legal rights.
It’s important that patient navigators once able to convey the specific impediments that stand in the way of effective treatment, go in pursuit of remedies to overcome the obstacles that they may encounter while pursuing treatment. This means that employees in this role need to be highly knowledgeable of healthcare systems and what can be done to ensure the patient is provided the best possible care. Attributes of compassion, positiveness, trust-building and coaching skills are key to success as a navigator.
To do well in this role, it’s critical that the employee be able to answer patients’ questions as they arise. This means that navigators must have a strong understanding of healthcare systems and how they function. They should also be a compassionate, positive individual who is capable of inspiring confidence in the patients served.
Ultimately the impact of the work of patient navigation is embedded in the social determinants of care. This addresses the social, cultural, environmental, and economic conditions in society that impact upon health. In this regard, colleagues compile and disseminate evidence on what works to address these determinants, build capacities and advocate for accelerated action.
Imagine that you, a member of your family or a close friend was suffering from cancer and none of the hospitals in your locality had enough nurses on staff to provide safe, quality care. Now multiply that scenario by millions of Americans and you have a full-scale national emergency in the making.
Oncology nursing is a specialty that is currently facing a grave shortage of workers—a shortfall that could increase to crisis proportions over the next 10 years. According to a study published in the September/October 2001 issue of Nursing Economic$, oncology practitioners fear that the shrinking cancer nursing work force will not be sufficient to meet the demands of America’s 80 million baby boomers as they age.
The study, led by Peter Buerhaus, RN, PhD, FAAN, associate dean for research at Vanderbilt University School of Nursing in Nashville, warns that “nurse executives report great difficulty retaining experienced RNs, a lack of qualified applicants for open positions, and virtually no one believes there will be enough RNs in total, and oncology RNs specifically, in 10 years.”
Combine this alarming trend with the fact that cancer is one of the six critical target areas of the Department of Health and Human Services (HHS) initiative to eliminate racial and ethnic disparities in health outcomes by the year 2010, and the result is a field where minority nurses are not only urgently needed but can also make a life-or-death difference in their communities.
“Oncology nursing is a great field to get into, especially if you want to be involved in improving the health of minority populations,” says Mylene Perez, RN, OCN, BSN, head of the Oncology and Renal department at Dekalb Medical Center in Decatur, Ga. “People of color are at a disproportionately high risk for nearly all types of cancer.”
Perez, who is Filipino American, says she would strongly encourage minority nursing students to look into careers in cancer nursing. “If you are someone who has a strong need to help your own people, this is the right field for you,” she emphasizes. “In oncology nursing, you can really make a difference in the entire community–not just by caring for patients but also by providing screening and preventive education to the people around them.”
A Deadly Disparity
While cancer is a serious health threat for all Americans, this deadly disease is not an equal opportunity killer. Numerous studies have confirmed that racial and ethnic minorities are at a far higher risk of developing cancer than their Caucasian counterparts. Consider these chilling examples from HHS’ Office of Minority Health:
The incidence rate for lung cancer is about 50% higher for black men than white men.
Native Hawaiian men have elevated rates of lung cancer compared to Caucasian men.
Alaska Native men and women suffer disproportionately higher rates of colo-rectal and gastric cancer than do whites.
Vietnamese women in the U.S. have a cervical cancer incidence rate five times greater than that of white women. Hispanic women also suffer elevated rates of cervical cancer.
This trend of unequal outcomes is even more starkly revealed when looking at cancer mortality rates. For example:
For men and women combined, blacks have a cancer death rate about 35% higher than for whites, and black men are 50% more likely to die from the disease than white men.
The death rate for lung cancer is about 27 percent higher for blacks than whites.
The prostate cancer mortality rate for black men is more than twice that of white men.
Native Hawaiian and Alaska Native women have the highest breast cancer death rates in the U.S. And while African-American women have a lower risk of developing breast cancer than white women, they are 20% more likely to die from the disease.
What’s the reason for these shocking disparities? Eula Keen-Woods, RN, MHSM, CCRP, believes one of the key factors is that minority cancer patients are less likely to seek treatment early compared to Caucasians. “Sometimes they are in denial,” explains Keen-Woods, who is African American. “If they don’t have a family history of breast cancer, for example, they think they are probably not going to get the disease.”
Perez, who is president of the Philippine Nurses Association of Georgia, adds that underserved minority populations’ lack of access to information about cancer, combined with socioeconomic issues such as lack of insurance coverage, also create significant barriers to equal opportunity in cancer treatment.
“Because many minorities live in poverty, as I did when I was growing up, we don’t always get the screenings and preventive measures that we need,” she says. “And then when we do find out [we have cancer], we often don’t have the financial resources to go out and get treatment for it.”
Rusty Aujero, RN, BSN
Still another factor that tilts the balance of equal cancer outcomes unfairly towards Caucasians is the historical underrepresentation of minorities in clinical trials for new cancer treatments. As a result, says Bertie Ford, RN, MS, AOCN, an African-American clinical research nurse who works for the pharmaceutical/biotechnology firm Amgen, there is a serious lack of clinical data about which therapies are effective or not effective for patients from minority populations.
“We need more diversity in these trials,” asserts Ford, who is involved in STAR (Study of Tamoxifen and Raloxifene), a first-of-its-kind large-scale national clinical trial of breast cancer treatments that is actively recruiting minority women.
The low numbers of minority patients who participate in trials of experimental cancer treatments may be a reflection of a lack of diversity among the researchers who recruit participants for these studies, Ford adds. “One reason a lot of [minorities] don’t enter clinical trials is because they don’t see many recruiters who look like them.”
However, this research gap is beginning to narrow, she reports. Over the past few years, leading cancer research organizations have been developing strategies to increase the representation of minority patients in major studies like STAR, which is part of the National Interest Research Group’s National Surgical Adjuvant Breast and Bowel Project. The National Cancer Institute (NCI) has recently launched a new $60 million program, Special Populations Networks for Cancer Awareness Research and Training (SPN), designed to specifically address minority cancer disparities and encourage greater minority enrollment in clinical trials. The federal agency says its ongoing efforts have already increased minority participation to nearly 20%.
Culturally Competent Cancer Care
Many nurses of color in the oncology field agree that increasing the number of nurses who not only look like their minority patients but also share their cultural and linguistic heritage can play a big part in eliminating some of these unequal health outcomes. Rustica “Rusty” Aujero, RN, BSN, a Filipino-American nurse who works on the GYN/Oncology floor at Duke University Medical Center in Durham, N.C., feels that culturally sensitive care is key in cancer nursing.
Perla Torres, RN, BSN, AONC, CPON, (second from right) poses with a young bone marrow donor (second from left), the donor’s mother and the 13-year-old leukemia patient who received the bone marrow transplant (far right)
“Sometimes [minority] patients do not respond to the nurses or they are not cooperative, because they are afraid to do what you are telling them,” Aujero explains. “Often this is due to cultural misunderstandings, such as the patient’s lack of experience with Western-style medicine, so it is very important to know about, and be sensitive to, their background.”
Karen Taoka, RN, MN, AOCN, a case manager for cancer patients at the Queen’s Medical Center on the island of Oahu, Hawaii, holds a similar view. “The concept of caring for the whole person is basic to nursing,” she says. “As the U.S. population becomes more and more multicultural, the concept that a minority patient would benefit from having a nurse of the same ethnic background care for him or her is becoming increasingly important.”
Taoka, who is a third generation Japanese American, admits that this could be seen as a very narrow viewpoint, and she stresses that each patient should be treated as an individual. “But I think that if a nurse has some sense of, or at least some appreciation of, the patient’s cultural and ethnic identity, background and values, it can often make a world of difference,” she maintains.
Perla Torres, RN, BSN, AONC, CPON, a native of the Philippines, agrees that minority cancer patients often feel more comfortable being cared for by a minority nurse. A former pediatric oncology specialist who is now retired, Torres still volunteers at Operation Samahan, Inc., a family health and social services center that has two sites in the San Diego area and serves many Filipino patients.
Working with her own people is particularly rewarding for her, she says, because it is an opportunity to help the patients through a process that often terrifies them. “Some of them are not knowledgeable about cancer treatments,” she notes. “They come to the center knowing very little about medical issues and some of them really need help.”
For immigrant patients with limited knowledge of English, having a nurse who speaks their native language can also help break down barriers to effective cancer care. “This can make it much easier for both the patients and their families to communicate with their care providers,” says Torres, who also speaks Spanish. “These types of patients really need me.”
Rosario Nievera, RN, BSN, a Filipino-American nurse from Ballwin, Mo., who specializes in cardiology, knows first-hand how crucial it is for minority cancer patients to receive culturally competent care. She lost a brother to thyroid cancer and a sister-in-law to stomach cancer. Immigrant patients often have specific customs and traditions that can impact their receptiveness to care, Nievera points out.
“Cancer patients have many emotional needs,” she adds. “If their disease is terminal, they know they are going to die sooner or later. Psychologically, just the mere presence of someone who shares their cultural background makes them feel better. They can relate to us.”
In response to these needs, the Oncology Nursing Society (ONS), a national association that represents over 30,000 RNs and other cancer care professionals, is taking steps to help cancer nurses provide culturally sensitive care to minority patients. In 1995 the society convened a Multicultural Outcomes Team to provide its members with information and resources to help them gain cultural competence in practice, education and research. The team’s first project was the development of ONS Multicultural Outcomes: Guidelines for Cultural Competence, which was published in 1999.
To help nurses translate these guidelines into practical applications, ONS offers Multicultural Tool Kit, designed to give users “fundamental knowledge for providing culturally competent care to individuals, families and communities from various ethnic, religious, cultural or social settings.” Available through the Education section of the society’s Web site, www.ons.org the kit offers such resources as a PowerPoint slide presentation that can be used for classroom instruction, questionnaires for pre-assessing students’ cultural knowledge and a Transcultural Nursing Assessment Guide.
How many minority cancer nurses are there? According to Hank Walshak, the Oncology Nursing Society’s public relations manager, nurses of color comprise approximately 9% of >the society’s membership as of October 1, 2001 —but the actual percentage is probably higher. “That’s because our member surveys allow people to respond [to the question about their race or ethnicity] by checking the categories of ‘Other’ or ‘Do not care to respond,’” he explains.
Many of the nurses interviewed for this article say the number of minority nurses in the oncology field reflects the percentage of minorities in the total RN population—i.e., about 13%–and that the shortage of oncology nurses parallels the national nursing shortage. As a result, job opportunities for nurses of color who have specialized oncology knowledge and skills are readily available—and not just in the clinical setting.
“Many people still think that nurses only work at the bedside or teach,” says Amgen’s Ford. “But now [the health care and pharmaceutical] industry has really started to flood the market with jobs for nurses. For instance, my company is planning to hire several more nurses in the near future, and they will be looking at the top nurses in the field.”
Sandra Millon Underwood, RN, PhD, FAAN, an African-American cancer researcher and educator who recently received the National Black Nurses Association’s Nurse Researcher of the Year award, agrees that oncology nursing offers a wide variety of career opportunities on many different levels. For example, she says, there are many clinical positions currently available in hospitals—including those that specialize exclusively in cancer care–as well as in community health facilities that focus on acute care. Nurses are also urgently needed to fill positions in community education, cancer prevention and early detection programs. Nurses with master’s degrees have more options, Underwood adds, and those with PhDs and beyond can work in research, management, education and policy.
Underwood is the American Cancer Society Harley Davidson Oncology Nursing Professor at the University of Wisconsin in Milwaukee. Part of her role in this professorship, which was established to enhance the care of cancer patients, their families and those at risk of developing the disease, is to advance the ACS’ mission through professional and public education, and to promote cancer research and prevention.
Bertie Ford, RN, MS, AOCN
Preventing cancer before it strikes is the area where the need for oncology nurses is greatest, Underwood believes. “In fact, you don’t even need to be an oncology nursing specialist to do this,” she says. “My feeling is that all nurses, however they are employed, can take advantage of opportunities to present information about cancer prevention and screening to the patients and communities they serve.
“This isn’t to say we don’t need skilled nurses to provide cancer treatment in clinics and hospices, because we do,” she continues. “But I think the greater good can be accomplished by reducing the risk of cancer in the first place, through prevention and early detection.”
Bettina Willis, RN, MS, associate director of nursing for Medicine (which includes the oncology department) at the University Hospital of the Downtown Medical Center in Queens, N.Y., also sees this community outreach function as an important need that minority nurses can fill. Willis, who is African American, has worked as a cancer prevention educator in the Arthur Ashe Institute of Urban Health’s Black Pearls: Health and Beauty Outreach for Black Women program, which uses hair salons as sites for providing health education and screening to black women in inner city neighborhoods.
The Black Pearls program uses community residents, local health professionals and participating salons to teach women about health issues like breast cancer, sexual health, smoking cessation, heart disease, high blood pressure, nutrition and organ donation. The participants watch a film while they are getting their hair or nails done, then listen as the educators discuss information about disease prevention and early detection.
“We are fortunate that the institute has asked black nurses to participate in this program, because it is a very effective way we can reach our own people with this important information,” says Willis. “There are many young people who don’t really know about cancer screening and the importance of early detection. Every time I have helped them learn about it, it’s been a very gratifying experience.”
Whether they choose to focus on treatment, prevention, research or teaching, minority nurses can make important contributions in virtually every aspect of oncology nursing. “We need more nurses in areas like bone marrow transplant, chemotherapy and radiation, and genetic counseling,” Willis emphasizes. “Our country’s population is getting older, the baby boomers are getting older. We need that new wave of nurses to come into the field. There is a vast number of opportunities for them.”
“An Incredible Experience”
When Bertie Ford was a new graduate 18 years ago, she started off in oncology nursing and has never left the field. But that doesn’t mean that nurses without previous work experience in cancer nursing can’t break into this specialty.
“Really, you can come into oncology nursing with just about any background,” she says, “except maybe ER or trauma nursing, because cancer units prefer to hire nurses who are used to having a longer relationship with the patient. You need to have a good background in med/surg and have good clinical skills, because cancer patients often have a number of co-morbidities. You also have to have the ability to offer psychological support.”
Keen-Woods, who lost a sister to breast cancer, believes there are certain characteristics that are necessary for a successful career in oncology nursing. “You have to be a compassionate and caring person with the ability to assist others and help make their lives more comfortable. You have to be willing to give a part of yourself to the patient, to make them feel like they have someone they can turn to who is concerned about them and cares about their well-being.”
For Keen-Woods, the greatest reward is feeling she has made a difference in a cancer patient’s life. “What makes it really worthwhile is when you are able to care for a patient when they are at their weakest moment and then see them respond to the treatment,” she asserts. “You see that your patient did make it and they are able to go home, live a nice life and come back to show you their wedding pictures and pictures of their babies.
“Even when the outcome isn’t as positive and the patient dies, you can be there to console the patient’s family and help make their loss a little easier for them,” she adds. “That can be rewarding in its own way. You also know you did everything you could to make that patient’s life more comfortable as they prepared for the end.”
Taoka says she find oncology nursing a very challenging field, but one that also provides great personal satisfaction. “It is not static. It is a very dynamic and exciting field where things are constantly evolving,” she explains. “The other thing that’s so rewarding about oncology is the opportunity to work so closely with your patients and their families. It is just an incredible experience. You learn so much about yourself and you definitely learn not to take life for granted.”
Resources for Cancer Nurses
For more information on careers in oncology nursing, contact the following organizations:
Oncology Nursing Society (ONS) 501 Holiday Drive Pittsburgh, PA 15220 (412) 921-7373 www.ons.org
The association’s Web site, ONS Online, is a particularly valuable resource for prospective oncology nurses as well as other health care providers, cancer patients and their families and friends. Its vast menu of information includes everything from job listings and news about the latest developments in cancer treatment to funding sources for cancer research.
Association of Pediatric Oncology Nursing (APON) 4700 W. Lake Avenue Glenview, IL 60025-1485 (847) 375-4724 www.apon.org
If you are particularly interested in caring for kids with cancer, pediatric oncology nursing is a field that offers many career opportunities. APON is an association of more than 1,900 RNs and other pediatric hematology/oncology health care professionals dedicated to providing care for children and adolescents with cancer or blood disorders.
Intercultural Cancer Council (ICC) PMB-C 1720 Dryden Houston, TX 77030 (713) 798-4617 http://iccnetwork.org
The ICC’s goal is to promote policies, programs, partnerships and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the U.S. and its associated territories. The council offers such resources as a biennial symposium and cancer fact sheets for specific minority populations.
National Cancer Institute (NCI) Building 31, Room 10A31 31 Center Drive, MSC 2580 Bethesda, MD 20892-2580 (301) 435-3848 www.nci.nih.gov
One of the National Institutes of Health and the nation’s primary federal agency for cancer research, the NCI offers information on cancer treatments, risk factors, cancer screening/testing, minority health disparities, current clinical trials and research funding. The NCI’s Cancer Information Service, a free national information and education network, is an invaluable resource for both oncology nurses and cancer patients.
American Cancer Society www.cancer.org
Headquartered in Atlanta with more than 3,400 local offices, the ACS provides a wealth of information, including culturally competent print and online patient education materials and information for cancer survivors. For nurses and other cancer care professionals, ACS offers a cancer drug guide, treatment decision tools, books and publications, as well as numerous resources for cancer researchers.
Peggy Townsend, MSN, RN, CPON, will never forget treating her first cancer patient–a four-old girl who had just been diagnosed with leukemia.
“The family was very close, and of course this diagnosis devastated them,” she recalls. “I had to be the one to be strong, and they depended on me and trusted me.”
Online Info: Internet Resources for Nurses Interested in Pediatric Oncology • Nurses for a Healthier Tomorrow provides a good overview of careers in oncology nursing at www.nursesource.org/oncology.html. • The Association of Pediatric Oncology Nurses, www.apon.org, provides information on continuing education, best practices, jobs, conferences, publications and more. Formed in 1973 when four pediatric oncology nurses held an impromptu meeting, and incorporated as a not-for-profit organization in 1976, APON is the leading professional association for registered nurses caring for children and adolescents with cancer and blood disorders and their families. The group has approximately 2,000 members worldwide. • The Oncology Nursing Certification Corporation, www.oncc.org, develops, administers and evaluates programs for certification in oncology nursing, including Certified Pediatric Oncology Nurse (CPON).• The Intercultural Cancer Council provides a fact sheet about minority children/adolescents and cancer at http://iccnetwork.org/cancerfacts/.• The Oncology Nursing Society, www.ons.org, offers an online Multicultural Tool Kit that can be used in any oncology nursing setting. (Click on “Clinical Practice” then “Special Populations.”) The kit is designed to help nurses provide culturally sensitive care to ethnically, culturally and socially diverse individuals, families and communities.
Today the former patient is a healthy 17-year-old college student. The teenager and her family still keep in touch with Townsend to say thank you.
Every nurse who specializes in pediatric oncology inevitably is asked: How can you do it? How can you face every day the ordeal of seeing children suffering with cancer? But for these nurses nothing is more rewarding than making a difference in the lives of kids and their families at such a critical time.
“I work here because I see it as helping children overcome some of the worst diseases, and I help parents cope with one of the worst nightmares of their lives,” says Adeline Fredricks, BSN, RN, a pediatric oncology nurse at Children’s Memorial Hospital in Chicago.
Thanks to the tremendous medical advances that have been made in the war against cancer in recent years, today’s pediatric cancer nurses have hope on their side.
“It’s not always a sad story,” says Rita Secola, MSN, RN, CPON, president of the Association of Pediatric Oncology Nurses (APON). “Today we cure probably greater than 60% of children with cancer.” In fact, the cure rate for acute lymphoblastic leukemia, the most common form of cancer in children, now approaches 90%.
“I still get Christmas cards from children I took care of 15 years ago,” adds Secola, who is clinical manager of the inpatient center at Children’s Hospital of Los Angeles.
Melissa Silva, CPNP, a pediatric nurse practitioner at Children’s National Medical Center in Washington, D.C., has a hard time choosing one example of a patient whose recovery inspired her, because there are so many. Pictures of children crowd her desk. “There are so many of them who were at death’s door, and yet somehow, someway, through hope and prayer, they got through it,” she says. “To see them now walk into our clinic is very rewarding.”
“Not the Same Old Nursing”
Pediatric oncology nurses work in a variety of capacities. Clinical nurses provide care at the bedside, deliver blood products, administer chemotherapy and other procedures and provide patient education to kids with cancer and their families. Case manager nurses work with a physician team to coordinate and monitor care throughout the treatment process. Some case management nurses work for insurance companies.
Ada Santa Cruz, RN (left) with a young patient and mom.
Other nurses in pediatric oncology work as clinical educators, providing staff training and making sure newly hired nurses are following treatment protocols. The specialty also needs research nurses who can investigate factors affecting cancer outcomes and conduct clinical trials so that new treatments for childhood cancers can be developed. And there are opportunities to move up into administrative and managerial positions, such as clinical managers.
As a pediatric nurse practitioner, Silva coordinates the care of patients with cancer, especially those with acute lymphoblastic leukemia. She also works on a pediatric palliative care team, a multidisciplinary group that makes recommendations for pain and symptom management and consults on end-of-life issues.
Silva says she always wanted to be a nurse for as long she can remember. She got interested in working with young cancer patients after watching a St. Jude Children’s Research Hospital television special. “That sealed it for me,” she remembers. “It was seeing the courage these children had. Despite having these awful illnesses, these kids were still smiling.”
One of the greatest benefits of working in pediatric oncology is the opportunity to really get to know patients and their families, says Ada Santa Cruz, RN, who decided to pursue a career in cancer nursing after both of her grandmothers were diagnosed with the disease. As a clinical nurse II at Children’s Hospital of Los Angeles, Santa Cruz administers chemotherapy, provides care to alleviate pain, and educates and advocates for patients and families. Her work also entails performing countless small acts of kindness.
“Sometimes it means bringing a parent a box of tissues or bringing a patient a Nintendo game,” she explains.
Santa Cruz, too, finds these young cancer patients inspiring. “You see this different side of life,” she says. “These children are like lions. They have an enormous amount of strength. Despite having chemotherapy and getting stuck with needles, within in an hour they want to run and play. When we have arts and crafts, some kids will look forward to that all morning.”
Another advantage of a career in pediatric oncology is the opportunity to work on the cutting edge, says Secola. In cancer treatment, new drugs are under development all the time. Nurses working in pediatric oncology get to administer the newest treatments available and see for themselves the rewarding results when a child’s condition dramatically improves. “It’s not the same old nursing,” she emphasizes.
Culture, Kids and Cancer Care
As with many other specialty areas of nursing that have been severely affected by the RN shortage, the need for pediatric oncology nurses is acute. Plus, this specialty urgently needs more minority nurses, who play a vital role in helping hospitals meet the needs of children and families from diverse cultures. After all, the last thing the parents of a critically ill child need at this difficult time in their lives is having to deal with linguistic barriers or culturally insensitive care.
“Patients come to [our medical center] from all over the world,” says Silva, who is of Portuguese/Cape Verdean descent. “They often view death and dying differently than we Americans do. We have to respect their families’ religious beliefs and practices.”
Santa Cruz, for instance, recalls a family from Jordan who did not want the staff at her hospital to touch the body after their child had died. Nurses worked closely with the family to get permission to do what they needed to do.
Having a racially and ethnically diverse pediatric oncology nursing staff can also help children and families of color feel more comfortable in an unfamiliar, and perhaps even frightening, hospital setting. Fredricks, who came to the United States from Nigeria when she was 14, has treated some patients at Children’s Memorial who were from Nigeria. When the parents saw her and found that she was able to communicate in their native language, Ibo, “they felt at home,” she says.
Santa Cruz feels that her ability to speak Spanish creates a cultural bond with Spanish-speaking families. But just being able to speak the language isn’t enough, she cautions. Everything must be translated properly to the parents’ level of education. Misunderstandings can develop if medical terms are translated but not explained. For example, a parent might think a “positive” test result is a good thing, when just the opposite is true.
Not Always a Happy Ending
While getting to see children conquer cancer and grow up to lead healthy lives is the most rewarding part of a career in pediatric oncology nursing, there’s no denying that there are also tough times. Sadly, the reality is that not every child is able to win his or her battle with the disease.
Melissa Silva, CPNP
“The most challenging part is when children who have gone through treatment relapse and we lose them,” says Townsend, who is African American.
Silva says occasionally months will go by without any deaths, and then suddenly three or four children will die within the same month. When that happens, she adds, “we all grieve.”
When she’s feeling down, Silva makes a point to drop by the long-term survivors’ clinic, where she can see patients who have been free of cancer for five to 20 years or more. “Some are married now,” she says. “Some who were babies when we cared for them are now in college. That makes me feel better.”
She also gains strength from the camaraderie she shares with other nurse practitioners at her facility. “We have a wonderful group. If we’re having a bad day, I know I can come back here and vent to them.”
At Children’s Hospital of Los Angeles, says Secola, nurses are taught how to cope with these emotional challenges as part of their orientation. They are instructed to develop a plan for how they will take care of themselves and how they will maintain professional boundaries. The nurses get a lot of support from one another, and the staff conducts debriefing sessions after particularly tough cases. Hospital chaplains also provide support, and counseling is available through the employee assistance program if someone needs extra help.
Nurses have to set boundaries for themselves, so they don’t get overinvolved with patients and their families or take on more than they are capable of handling, Secola explains.
Santa Cruz, who has worked in her position for only two years, says setting boundaries is more challenging for new pediatric oncology nurses like herself than it is for veterans. “I’m still learning not to become so attached to patients. I need to be emotionally in tune with what I can take on.”
Fortunately, she adds, her strong religious faith helps her maintain balance in her life. Hobbies, such as running, also help. She recently completed a marathon.
As they become more experienced, nurses eventually learn to deal with the hard losses, says Townsend. “But it never becomes easy. If nurses get to the point where they don’t have to cry, those are the people I worry about.”
There’s no getting around the pain of seeing a young patient die. As Fredricks describes it: “Somewhere in your heart, you know this child is not going to make it. You go home and you cry yourself to sleep. Sometimes you come back [the next day] and the child is gone. But you have to move on. You have to be able to let go and move on so you can help other kids.”
One thing that helps pediatric oncology nurses cope when a child dies is knowing they did their best. Often they helped grant patients’ last wishes to spend their final days at home with family.
Is This Career Right for You?
Registered nurses can work in pediatric oncology right out of nursing school. The once-common belief that nurses should get general experience first before specializing no longer holds true today, Secola says. Hospitals are more than willing to offer specialized training–e.g., in chemotherapy–for new nurses.
Working with pediatric cancer patients isn’t for everybody. “You have to be strong. You have to be compassionate. You have to be caring,” says Fredricks.
Because of the rapidly evolving scientific advances that are transforming cancer care in the 21st century, pediatric oncology nurses must also be flexible. This is a career that requires a lifetime of learning. If you’re a nurse who’s looking for something challenging with constant opportunities for growth, then this specialty is right for you, says Secola. “It’s not [the kind of nursing] where you learn a set of tasks and then it’s always the same.”
Townsend agrees. As education manager for the department of patient care services at Children’s Hospital of Los Angeles, she is responsible for RN staff development. She helps with the eight-day orientations for new nurses and provides support at the bedside to make sure the nurses are performing procedures correctly. “It’s constant learning,” she says. “Things change really quickly and you have to keep up with the standards and practices.”
While the daily pace in pediatric oncology is not as fast as in an emergency room or ICU, nurses must still stay on their toes because patients’ conditions are volatile.
“It takes a lot of advocating and picking up on signs and symptoms,” Santa Cruz explains. “You’re going to be stretched and it’s going to require a lot of patience and sensitivity. You don’t just look at the machines. You look at the patient. You look at the parent.”
Above all, compassion is at the heart of this work. “You may think you’re having a bad day, but you’re not the parent in the room who has just been told their child has cancer,” says Townsend. “You have to turn off [any personal stuff that’s] going on with you.”
And that’s not always easy. But the long-term impact pediatric oncology nurses have on the lives of children and families makes the challenges all worthwhile. As Townsend puts it, “I probably would do this for free if I could.”
Female breast cancer is the most commonly diagnosed cancer among all races. Yet, mortality rates differ by race and ethnicity, and early detection numbers falter among minorities. Breast cancer is the second most common cancer death for all women, with the exception of Hispanics, where it is the #1 cause, according to Jacqueline W. Miller, M.D., F.A.C.S., of the Centers for Disease Control and Prevention (CDC). “There are so many variables when it comes to disparities,” she explains. “That is an issue, as you can’t see why there was a disparity, as there are so many other factors.”
Lillie D. Shockney, R.N., B.S., M.A.S., has seen much progress in breast cancer research in the 14 years she has been the Administrative Director of the Johns Hopkins Avon Foundation Breast Center in Baltimore, Maryland, a comprehensive, multi-disciplinary breast care program. There were assumptions for decades that minority women had higher mortality rates from breast cancer due to cultural reasons, she says. “What has been biologically determined is that the breast cancer does not behave in the same way in all races and ethnicities,” she says. “So for more minority women, even if we are seeing someone early-stage, we need to recognize that we need to be very aggressive with her treatment because the prognostic factors that her tumor has may present.” And not only could it present aggressively, the cancer may be more likely to recur as well.
Minorities, breast cancer research, and you
It provides credibility to studies if more researchers came from minority backgrounds, Shockney says. “If we’re talking to someone who is of Korean descent in one of our local communities, she is going to believe and trust someone of her own culture or ethnicity than someone who isn’t,” Shockney says. “That’s something that’s just instinctive, I think. It really isn’t meant in a malicious way.”
In fact, it is a golden opportunity for nurses from minority backgrounds to get into the research arena. “They have the opportunity to have their voices heard on behalf of not just nursing, but on behalf of patients and consumers,” Shockney says.
People of different races and ethnicities also need to be more represented as breast cancer study subjects. There are challenges getting people from all segments of society into clinical trials, says Yvonne Bryan, Ph.D., Chief of the Office of Extramural Programs at the National Institute of Nursing Research (NINR).
NINR, part of the National Institutes of Health (NIH), is the principle federal agency responsible for the support of nursing research. “Research priorities include promoting health and preventing disease, improving quality of life, eliminating health disparities, and setting directions for end-of-life research,” Bryan says. “Breast cancer is obviously a public health concern that intersects all of these priorities.”
NINR has found a promising approach—community-based participatory research, or CBPR—to increase involvement throughout society in the design and implementation of studies. “It really requires a relationship between the community and the academic researcher…to play an active role [together] in the research process from A to Z,” Bryan explains. “That means study conceptualization, design, participant recruitment, and retention, analysis, and dissemination.”
NIH is one of several organizations supporting the community-based participatory research of Karen Williams, Ph.D., an assistant professor in the College of Human Medicine at Michigan State University. Using this method of research, Williams designed a breast and cervical cancer intervention called the Kin Keeper. The program helps African American women receive potentially life-saving health care information in their own home with family support.
“Her program has shown that African American women’s strong family bonds have reinforced information sharing to increase cancer literacy and as well encourage participants to follow through with mammograms and other cancer screening and procedures,” says Bryan, a native of Jamaica who also studied nursing in her homeland. The Kin Keeper curriculum has been translated into Spanish and Arabic, bringing this preventive health care information and support systems to other populations in the United States that often experience health disparities, Bryan adds.
Bryan also points to two other studies by NINR-funded researchers involving minority subjects, including “The African American Breast Cancer Survivorship Program,” led by Kathleen Dwyer, Ph.D., R.N., of the University of Oklahoma College of Nursing. Dwyer’s team is examining the impact of breast cancer treatment completion on the physical and emotional quality of life of African American women who have survived the disease. Participants learn coping and support strategies to readjust to life after treatment.
A NINR-supported study completed in 2002, conducted by Marylin Dodd, Ph.D., R.N., F.A.A.N., and Noreen Facione, Ph.D., R.N., F.N.P., F.A.A.N., of the University of California at San Francisco, found some factors that contribute to a delay in reporting self-discovered breast cancer symptoms can be racial or ethnic. “Among both Latina and black women [it] included low-income and lack of health insurance, lower education, and poor breast cancer knowledge,” Bryan says. “The study concluded that decreasing the delay in reporting symptoms could help reduce breast cancer mortality in minority populations.”
Through the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), the CDC is providing low-income, uninsured, and underserved women access to breast and cervical cancer screenings, diagnostic services, and treatment referrals. For breast cancer screenings, women must be between the ages of 40 and 64. Between 8% and 11% of U.S. women of screening age are eligible to receive the program’s services. To be eligible for the program, women must be uninsured or underinsured and at or below 250% of the federal poverty level.
The NBCCEDP funds breast and cervical cancer programs in every state, the District of Columbia, five U.S. territories, and 12 American Indian/Alaska Native tribes or tribal organizations. Five of these programs are in Alaska and seven are on American Indian tribal programs, found in six states stretching from Washington to Alabama. “Within their own tribes they don’t typically have a lot of resources. Having health care services, including screening services, is a challenge,” according to the CDC’s Miller. Researchers also face reluctance among some Native American women when it comes to seeking traditional Western treatment.
A CDR with the U.S. Public Health Service, Miller has been a medical officer with a focus on breast cancer epidemiology, prevention, and early detection since 2004. One of her concerns is the alarming frequency with which minority women get breast cancer at a young age. Native Americans, for example, are often diagnosed with breast cancer at a younger age than other groups, Miller says. “Of course they have a higher risk factor because they have the reservations with casinos, and smoking and alcohol drinking are sometimes pretty high on reservations.”
African Americans and Ashkenazi Jews also have a higher risk of having breast cancer as younger women—in their 40s—than older women. Triple-negative breast cancer is a somewhat newly recognized form of breast cancer, often found among young 40-something African American women, according to Miller.
Women with deficient levels of estrogen, progesterone, and HER2 receptors—the characteristics of triple-negative breast cancer—may not respond to treatment as readily as others. “If you have estrogen [and] progesterone…that means you can respond to certain types of medication better,” Miller says. Research in this area is in the early stages.
The Early Detection Program also collects data to better understand the groups it serves. Researchers record when women come in for screenings, and how long it takes to get a mammogram and then reach a diagnosis. When patients have breast cancer, the CDC looks at the time elapsed between diagnosis and treatment. “We monitor it so we make sure that we have quality insurance and quality improvement,” Miller says. “We don’t want someone to come in with an abnormal mammogram and it take nine months before someone sees her. We have to make sure that they get timely, quality treatment.”
The Early Detection Program works in conjunction with national organizations, state health agencies, and other groups that help to develop, implement, and promote effective cancer prevention and control practices. These partners lead programs and outreach, putting “research findings into action in order to achieve mutually beneficial goals,” the CDC reports. Not all partners receive CDC funding.
Having nurses from minority groups could help reduce some disparities. Nurses are often the first people patients turn to with questions about their diseases, says Miller, who is African American. Nurses also help patients navigate the system. “Problems arise from lack of communication, and nurses really play a major role in making those reminder systems and in education,” she says. “I think all nurses can do that.”
Miller said she believes minority populations are fairly underrepresented in a lot of research today. “That’s one big push right now with clinical trials—to make sure we get more minority patients involved.”
Facing disparities head on
Minority nurses also play a key role in battling breast cancer in the clinical setting. Andrea Smith, R.N., B.S.N., has worked at the Evelyn H. Lauder Breast Cancer Center of the Memorial Sloan-Kettering Cancer Center in New York City for the past two years. An office practice nurse, she works one-on-one with the treating physician as part of the consultation team.
“I try my best to work one-on-one with the physician so I know what’s going on with each one of my patients, whether it is treatment or diagnostics,” Smith says. “I try to stay as well informed as I can because they call me first and then they speak with the physician if necessary.”
The New York City center provides comprehensive breast cancer prevention, diagnostics, treatment, and support services all under one roof. Memorial Sloan-Kettering Cancer Center conducts one of the largest programs of clinical research in the world. In breast cancer, that research encompasses surgery, radiation therapy, chemotherapy, imaging techniques, and genetics.
Smith is one of approximately 20 office practice nurses in the 16-story center. “I like working with women and specifically [those with] breast cancer,” she says. “I find it interesting.” And new breast cancer research and treatment options come out all the time.
Smith says she’s seen an increase in the number of breast cancer studies offered and patients registered, and women are becoming more aware of the benefits of early detection. However, patients from minority backgrounds are still lagging behind in screenings. In 2005, black women, when compared to non-Hispanic white women, were 10% less likely to have been diagnosed with breast cancer. Black women were also 34% more likely to die from the disease, according to a February 2011 report featured by the AARP.
“When I speak to patients, minority patients, they will give me their own story,” Smith says. “They might tell me that either they didn’t have the right type of insurance or did not know that they should go get screened because they didn’t have the knowledge or education regarding it.” Many of these patients grew up not seeing a physician regularly for well visits. “They say, ‘My parents never really ingrained that in me, going to a doctor, going to get check ups,'” Smith says.
Smith says many of those patients focus on the immediate future; acute situations prompt them to seek care, but preventive measures often are not taken. “It’s a lot of different things, but I think that’s the majority of reasons that you don’t see a lot of minorities going to the doctor is that they just don’t feel comfortable about it or they don’t have the right type of insurance. They can’t go if they can’t afford it, and free clinics don’t offer anything, very little.”
Many people from minority groups tend to be religious, Smith notes, and that can impact the way they think about health care. They may think, “God will take care of me. I really don’t need to worry about those things,” Smith says.
In turn, community outreach in churches may be an effective way to educate women and men about breast cancer. “People go to church,” Smith says. “That’s where they get a lot of their information. I think that would be one good place to start.” Community centers could also be a good venue to reach minority populations, she adds. “You need to get to where these minorities congregate, and I am not just talking about African Americans,” Smith said. Depending on the community, a lack of access to the Internet and cable television, which may advertise local health care resources, can also be an issue.
Minority nurses can also be effective when addressing patients from similar backgrounds. “A lot of times too, it’s about relating to people. It can be an issue such as hair loss due to chemotherapy….It’s not the same for Caucasian women as it is for African American women,” Smith says. “Very simple things like that can be where they may feel more comfortable having a nurse who they can relate to.”
The ins and outs of oncology nursing
Myrielle Whittle, B.S.N., R.N., is a clinical nurse who works in the outpatient oncology and hematology clinic at Beth Israel Deaconess Medical Center in Boston. A registered nurse for more than 30 years, Whittle made the move into oncology early in her career. Today more than half the people she sees are breast cancer patients. “They come to me after they’ve been diagnosed with a mammogram or have been through surgery,” says Whittle, a native of Haiti. “By the time they get to me, it is for what is called complementary chemotherapy with their surgery, or they may be getting radiation. It is usually two or three weeks after they’ve had their breast surgery. I explain to the patient what chemotherapy is, what their medications are. I’m the person who oversees all of that,” Whittle says. “If a patient has any symptoms or questions or concerns, it usually goes to the office practice nurse first.”
Working with breast cancer patients in an outpatient setting is a challenge, Whittle admits, but one that she embraces. “When people are in the hospital, they stay for three to five days. In outpatient you only have maybe two or three hours to use the resources you have to help them manage their pain. In ambulatory oncology, it’s more than just administering a drug….I feel like a point guard in helping them.”
Each patient has individual needs, whether it is managing a job, applying for disability stipends, or paying for chemotherapy treatments, as well as more mundane tasks, such as arranging transportation to the clinic. Whittle often helps patients manage these aspects of their lives. “There’s a lot I get involved in,” she says.
When it comes to breast cancer, the patient-nurse relationships can also be long-term. “After they get diagnosed, it can be a six-month process where I see a patient maybe once a week. You do build up a relationship with them,” Whittle explains. “From that you find out what is and what isn’t working for them for managing their pain. It’s not just sticking an IV in and giving them a drug and sending them on their way.”
Yet, for all the happiness that comes with seeing a patient through to remission, oncology nurses must also prepare for the inevitable bleak diagnoses— losing patients after bonding with them over long-term treatments. Fortunately, even when a patient’s breast cancer is not curable, they often survive for many years. “It’s [about] management,” Whittle says. “I’ve had patients who have had it for 15 years. I see them on a regular basis and in that course of time a lot of issues come up. Ambulatory care is very different and very challenging, but it’s very rewarding at the same time. I get to have a relationship with my patients and I love that feel. I become like part of their family.
“With oncology, they have new research and drugs that they didn’t have four or five years ago. People may think, ‘Oh everyone in this [area] dies.’ While that may be, we can help someone graduate from college and it’s nice to see.”
While Whittle says she sees many Asian and African American patients, she calls cancer thegreat equalizer. “Breast cancer does not differentiate, but sadly sometimes socioeconomic status affects diagnosis,” she says. “I think overall we are making progress with breast cancer. Every year people are getting diagnosed at an earlier stage. When people are diagnosed at stage 1 and stage 2 instead of stage 3 or 4, there is a much better outcome.”
Research has changed the way patients are treated over the years. “The way I treated patients four or five years ago may not be the same today,” Whittle says. “I’m not a ‘research nurse’ but I do participate in research. We have a patient on a clinical trial and I administer the drug.”
And when you approach the work with passion, you truly make a difference, regardless of where you work or whom you’re treating. “It sounds corny but it’s one of those things where everyday you feel like you’ve made a difference in somebody’s life, and as a nurse you do. Sometimes it’s just holding a patient’s hand or just listening to a patient,” Whittle says. “Nursing is a science and it’s an art; there’s a lot they don’t teach you in nursing school, but if you like it, and you are a people person, you learn. I just love being a nurse. I encourage anybody who is considering that position to go for it. I feel grateful everyday and appreciated by patients and their families.”