Whenever Debbie Legault’s phone rings, she knows exactly what to do. Close eyes. Breathe in. Breathe out. Reset. “Hello? This is Debbie.” 

Debbie is a caregiver. It is a role she hadn’t anticipated, especially after being repeatedly told that the lump in her daughter’s breast was nothing to worry about. If there was a possibility it might have been malignant, she would have taken time off from work, caught the next flight to Canada, and waited by her daughter’s side for the test results. Just in case. 

But thankfully, there was no cause for concern. Her daughter was young, only 27. There was no family history of cancer. The doctor, nurses, lab staff, and imaging technicians had assured her that it wouldn’t be anything serious. On the day the results came back, Debbie went about her usual routine and waited for her daughter’s call confirming that the lump was benign. Then the phone rang—and suddenly, she was a caregiver. 

According to a report issued by the National Alliance for Caregiving and AARP, the number of individuals in the US aged 18 years and older who provide unpaid care to relatives or friends 18 years or older

rose from 39.8 million in 2015 to 47.9 million in 2020, which means that at least 19.2% of American adults are caregivers. An estimated 6% care for a loved one with cancer.

To learn more about the needs of caregivers and the ways in which oncology nurses can support them, Oncology Nursing News® interviewed Debbie, Michelle Mollica, PhD, MPH, RN, OCN; and Sharon Cavone, BSN, RN, OCN.

When asked about her daughter’s medical team, Debbie is quick to point out that although reassurance is very important, “honesty would have been better. Had anyone said there was a possibility the lump could be breast cancer, and to be prepared, I would never have let her go into that appointment alone. Everyone assured us it would be benign. Of course, a piece of that was our own denial.” 

After the diagnosis, however, “the machine that kicked in was quite magnificent [and] everything happened quickly.” To do what her daughter needed done, Debbie left behind her husband, her home, job, and life in the US and flew to Canada. The diagnosis sent her world reeling. 

Caregivers face substantial stress, with 62% reporting a high burden and 43% saying they must carry out complex tasks for which they are unprepared.

Giving care, whether voluntarily (46%) or not (53%), affects the physical, social, and emotional health and well-being of caregivers, their employment, and financial stability. Those who feel they don’t have a choice in the matter experience the highest levels of stress.

Debbie recalls feeling a great deal of anger, an emotion she intentionally kept to herself. “The cancer care team did not help me with my anger because I did not take it with me…to the clinic. I was…angry about what was happening to my child…angry at the universe. Underneath the anger, I never felt so helpless in all my life. It was crippling, suffocating.…I felt angry, but in conversation I would be calm and caring. The voices were screaming so loud in my head, I thought everyone could hear them.” 

Loneliness was something else Debbie, like other caregivers, experienced. “I felt separate from everyone. I took my role as a caregiver very seriously. I didn’t let anyone in, not even my husband of 38 years.” One nurse, however, made all the difference. Rather than seeing her daughter as a patient with cancer, she saw her as a peer and talked to her about things people their age typically discuss. “She would be changing the IV and talking with her about boyfriend problems, like she was talking to…someone in the office,” Debbie said, but she made it clear that the nurse in question was the exception, not the rule. 

Michelle Mollica, deputy director of the Office of Cancer Survivorship at the National Cancer Institute (NCI), has researched caregiver stress and burden and authored numerous articles on the subject.

She noted that although the health of the patient affects that of the caregiver, the reverse is also true and that supporting caregivers begins by acknowledging their needs. “Caregivers are focused on their loved one’s health and not always comfortable advocating for themselves.” She encourages oncology nurses to pay attention to caregivers and ask how they’re feeling. 

“Caregivers of cancer patients are increasingly being asked to do more,” Mollica said, “including delivering treatments at home, making sure medications are taken, monitoring symptoms, and knowing when to call the doctor.” Nurses play a key role in making sure caregivers have the education and training needed to perform such work. Identifying and accommodating their learning preferences is very important, as is offering them the help of social workers, case managers, patient navigators, the NCI, and online support groups to help caregivers receive the services that they need. 

Debbie agrees that social workers and others, including volunteers, can be very helpful, but she would like to see them become part of the standard of practice and be readily available on the unit, rather than only upon request. “The nurses were busy doing complex work, and sitting down with a caregiver requires time. Addressing all their emotions and questions…requires more than a few…minutes. An IV may start beeping, and they must jump up and handle it.” Which is why it was easier for her to ignore her needs than to wait for a nurse to have time to talk. 

Cavone, who has spent more than 35 years working with oncology patients, is well-acquainted with the hectic pace of nursing and offered a few tips for them. Be they experts, novices, or simply unsure about their relationship with a caregiver, they should “go in and be warm,” she said. “Put your hand on the patient or caregiver, or ask permission to do so. Introduce yourself in a warm way, and when you are uncomfortable or don’t have the answers, ask questions, such as ‘What worked for you in the past? What is the way you like this done?’—whether it’s a port being accessed or being awakened for vital signs. Engage both the patient and the caregiver and ask about their concerns upfront.” Taking a few minutes to do this sets a tone of trust and openness. 

Another of Cavone’s anti-angst tips is to use inclusive language: “Talk to the patient and caregiver as a unit; speak in terms that convey a team effort.…Rather than…‘For nausea, offer ginger candy,’ say, ‘We can help someone with nausea feel better by giving them ginger candy.’ Using ‘we’ language will help the caregiver feel part of a team whose goal is… achieving the best possible outcome.” She also suggests allowing caregivers to express their feelings and—regardless of what they might think—respond by saying, “Let’s look at that, but first I want to make sure you hear what I have to say.” Then nurses should relay the information, specify where it comes from, and emphasize that it is evidencebased and that standards of practice are developed in accordance with clinical research. 

Building a relationship with a caregiver will also counteract fear or antagonism that is not based on fact. By validating caregivers’ feelings without being thrown by them, nurses have an opportunity to teach. If a caregiver insists their loved one receives a certain supplement, for instance, the nurse can simply ask if they have told the doctor or pharmacy and mention that certain professionals, like nutritionists, may be better able to understand their concerns. Nurses tend to believe that people expect them to have all the answers, but they can—and should— network with others. 

“People have strong views about what constitutes usual care, even with cancer,” Cavone said. Therefore, nurses should “learn not to react, but [instead]…listen and dissect what the caregiver is saying. Make sure the person asking the question or voicing the concern is heard, yet impart the evidence-based information you need to impart. This will help build relationships and open avenues of understanding.”

Cavone also urges nurses to determine whether a caregiver is just venting or looking for a solution, and to respond accordingly. If unsure, they should ask. Maybe caregivers need answers, or maybe they’re overwhelmed or unprepared to manage ostomy bags, feeding tubes, and chemotherapy pumps. Maybe they need a break or a day away. Nurses should hear them out and offer respite care, counseling, or information about coordinating care or navigating the health care system. They should invite the caregiver or relative to be part of the discussion, address their concerns, and tell them where to get help, how to find out more, and when to contact the clinic or emergency help line. 

Debbie’s experience was eye-opening and life-changing. She knows that it’s never over, that you can never “un-have” cancer. Everything her daughter does is informed by the fact that she had cancer. Debbie is passionate about helping others, so she writes and speaks about her experience. “Once you have cancer,” she said, “it seems you become cancer. Every backache, every headache raises the question, ‘Is this nothing, or is this not?’ It’s insidious. One cell could be hiding.” And whenever the phone rings, she knows exactly what to do. Close eyes. Breathe in. Breathe out. Reset.

1. National Alliance for Caregiving and AARP. Caregiving in the U.S. 2020. May 2020. Accessed September 13, 2022. https://bit.ly/3U9vl3o 

2. Irwin MM, Dudley W, Northouse L, Berry DL, Mallory GA. Oncology nurses’ knowledge, confidence, and practice in addressing caregiver strain and burden. Oncol Nurs Forum. 2018;45(2):187-196. doi:10.1188/18.ONF.187-196 

3. Mollica MA, Kent EE. Caregiver education and training: learning preferences of informal caregivers of adult care recipients. Clin J Oncol Nurs. 2021;25(4):483-487. doi:10.1188/21.CJON.483-487 

4. Mollica MA, Wilder Smith A, Kent EE. Caregiving tasks and unmet supportive care needs of family caregivers: a U.S. population-based study. Patient Educ Couns. 2020;103(3):626-634. doi:10.1016/j.pec.2019.10.015 

5. Mollica MA, Litzelman K, Rowland JH, Kent EE. The role of medical/nursing skills training in caregiver confidence and burden: a CanCORS study. Cancer. 2017;123(22):4481-4487. doi:10.1002/cncr.30875

Articles

Approximately 19.2% of American adults are caregivers for individuals 18 years or older. An estimated 6% care for a loved one with cancer.

Caring for the Caregiver: Practical Tips for Oncology Nurses

Chimeric antigen receptor (CAR) T-cell therapy has revolutionized treatment for patients with hematologic malignancies. Many researchers eagerly anticipate the advent of allogeneic CAR T cells, which would help alleviate the long engineering process associated with autologous therapy. 

Before CAR T-cell therapy entered the oncology treatment arena, there were patients with hematologic malignancies (ie, diffuse large B-cell lymphoma, acute lymphoblastic leukemia, and mantle cell lymphomas) for whom traditional chemotherapy and immunotherapy were unsuccessful. These patients were often told not much more could be done. However, CAR T-cell therapy has dramatically shifted that narrative to one of possibility and promise.

Growth in CAR T-cell research is inspiring. In 2017, the FDA approved 2 autologous CAR T-cell therapies. Since then, 3 autologous therapies have been approved and clinical trials for allogeneic CAR T-cell therapies are back on track, offering more hope to patients. 

To learn more about these therapies and their impact on patient outcomes, Oncology Nursing News® interviewed Brittney Baer, BSN, RN, patient nurse care coordinator for patients undergoing immune effector cell therapies, at Vanderbilt University Medical Center in Nashville, Tennessee; and Kelly Garvin, BSN, RN, OCN, a lymphoma specialist and primary nurse for Bijal Shah, MD, in the Department of Malignant Hematology, Moffitt Cancer Center in Tampa, Florida. Baer and Garvin are enthusiastic about the trajectory of CAR T-cell therapy and excited about future possibilities. “CAR T-cell therapy has given relapsed/ refractory patients another chance,” Baer said. “Before this treatment was available, they might find themselves running out of options. CAR T-cell therapy allows us to harness their immune system and use it to their advantage.” 

Baer said patients are thrilled with the treatment. “It’s a 1-and-done dose unlike chemotherapy and radiation, which require multiple treatment sessions. In addition, the adverse effects are much easier on patients and more transitory than those accompanying traditional therapy. Patients are grateful, even when treatment is not successful, because it provided them with 1 more option.” 

“CAR T-cell therapy is a targeted treatment,” Garvin noted. “Unlike traditional treatment—which kills anything dividing, including hair, nail, [gastrointestinal], and bone marrow cells—this therapy is designed to enhance the efficiency of the immune system to kill only the targeted malignancy.” 

The CAR T-cell process begins with collection of the patient’s T cells, known as leukapheresis; they are then sent to a manufacturing facility where they go through transduction.

 Transduction allows the expression of receptors on the T cell, which in turn target antigens on malignant cells. The cells are then rigorously checked for quality and purity. The engineering process for autologous CAR T cells can take from 1 to 3 weeks before they are ready to be shipped back to the treatment facility for infusion. “The biggest challenge with autologous therapy is time,” Baer said. “Our patients are quite sick and may not have the time needed to prepare the treatment cells.” 

Allogeneic CAR T cells undergo an engineering process like that of autologous therapy. However, because donor cells are used rather than the patient’s cells, allogeneic treatments can be prepared ahead of time and quickly made available. Of primary concern to nurses administering donor cell therapy is monitoring patients for graft-vs-host disease, which is not an issue with autologous therapy. 

Although these “off-the-shelf” donor CAR T cells are ready for quick shipment, which is an advantage, patients receiving allogeneic therapy may have significant travel times if they live outside major metropolitan areas where clinical trials are offered. Baer is anxiously awaiting FDA approval for allogeneic CAR T-cell therapy as clinical trials move into phase 2. “Approval would provide greater accessibility and benefit many more patients,” she stated. “Travel concerns and limited access also add to health disparity, which is always concerning.” 

Price is another discrepancy between autologous and allogeneic CAR T cells. “Autologous treatment is very expensive, whereas the pharmaceutical company covers the cost of allogeneic cells used in clinical trials,” Baer noted. 

Treatment efficacy for both autologous and allogeneic therapy has been described as “dramatic,” with “high rates of complete remission.” Baer and Garvin concur, each having witnessed similar results in their respective clinical settings. Both are hopeful CAR T-cell therapies will expand to include solid tumors and other cancers. 

Baer and Garvin would like to see these therapies move into a frontline treatment option. “It would be great if we could also predict which patients will get cytokine release syndrome and other toxicities and intervene quicker,” Garvin added. 

CAR T-cell therapy has opened an exciting new door in how we treat cancer, the experts concluded. It continues to signify a big step forward in the fight against this disease.  

1. Muthineni S, Zink K, Kambhampati S. A primer on chimera associated receptor T-cells. 

2. Baer B. CAR T-cell therapy: updates in nursing management. 

2021;25(3):255-258. doi:10.1188/21.CJON.255-258

Approval of off-the-shelf CAR T-Cell therapy options would provide greater accessibility and benefit to patients, say experts.

The Future of CAR T-Cell Therapy: Will Off-the-Shelf Options Soon Enter the Playing Field? 

Improving cancer screening in rural areas poses certain challenges not always seen in more populated settings. However, oncology nurses are adept at way-finding, particularly when the need is great. Early detection and treatment of cancer saves lives, yet for residents living in outlying and rural areas, risk factors for developing cancer tend to be greater than in urban areas, whereas screening rates are lower.

Factors contributing to these disparities include differences in accessibility to care, lifestyle, culture, and financial stability.

The COVID-19 pandemic, which resulted in delays of care across the geographical spectrum, hit rural areas hard, as financial strain forced out some providers or led to closures of numerous clinics and hospitals.

While the impact of the pandemic on cancer detection and treatment is not yet fully known, the need to improve screening in rural areas remains unquestionably urgent.

So what can be done to address this issue? To answer this question, 

® spoke with several oncology nurses who took on the challenge to improve rural cancer screening. Their efforts are inspiring and underscore the value of collaboration, innovation, and determination.

Carol Estwing Ferrans, PhD, RN, FAAN, is professor merita at the University of Illinois Chicago College of Nursing. She has coauthored numerous publications addressing rural cancer care, including an article with lead author Leslie Carnahan, MPH, PhD, on rural cancer disparities.

 She shared with us her experience and success improving cancer screening and early detection in the Chicago area and described disparities inherent in rural communities.

With grant money awarded from the National Institutes of Health (NIH), Ferrans and her colleagues set out to reduce late-stage breast cancer diagnoses, particularly among African American women in Chicago. “Fear is a huge barrier to screening,” Ferrans said. “When people are afraid of what screening may reveal, they are reluctant to participate. We addressed this barrier by producing a 14-minute video, ‘Beating Breast Cancer,’ featuring 5 beautiful African American women—all breast cancer survivors—telling their stories.”

The video, in addition to allaying fear, was created to clear up misconceptions pertaining to breast cancer and resonate with the intended target audience. As women responded to the cancer screening promotion, they were shown the video or provided the link to watch at home. The intervention worked. Thousands of women throughout Chicago responded, not only by completing cancer screening but also by following up as when recommended. The 5-year campaign and other such efforts were so successful, Chicago saw a 14% reduction in breast cancer death rates for African American women, more than any other major city in the US.

Motivated by the impressive results of the work done in Chicago, Ferrans has now shifted her attention to rural Illinois, where she will be working to reduce disparities alongside colleague Yamilé Molina, PhD, MS, MPH, who is spearheading the effort and seeking additional NIH grant money. Regarding barriers to care in rural communities, Ferrans explained that the work they’ve done has shown 4 primary drivers of cancer disparities. Lack of insurance stands as a major factor. “We think about farmers with large farms, and [although] they may have wealth tied up in their farms, people in rural areas often struggle with collective poverty and no insurance,” Ferrans said. Migrant workers are another concern, as they often have language barriers and are also without insurance. Culturally, there is a rural reluctance to go on public aid or use government resources, making these issues tricky to address. For people with insurance, their deductibles are often too high or screening isn’t covered. Some make too much money for Medicaid but not enough for insurance and slip between the cracks.

Lack of cancer resources in the community, such as mammography centers and oncology specialists, poses another challenge. Clinic closures and consolidations further reduce screening and treatment access. “It’s difficult when few specialists are available. Wait times are long, [and] it might take 2 months to see a specialist or have an initial visit,“ Ferrans said. “Delays in detection can advance cancer, setting up for later-stage diagnosis.”

Residents in rural communities may also face long travel times and associated fuel costs. Some have little or no time off from work or unreliable transportation.

The fourth disparity driver is fear, and although it’s not unique to residents in rural areas, it may be experienced differently. Rural residents may delay medical evaluation after finding symptoms, especially as COVID-19 continues to make its way through these communities. For many, the fear of cancer in addition to a COVID-19 diagnosis can be immobilizing.

These barriers may seem insurmountable, but Ferrans was quick to point out the hope and good news. “Nurses are making a difference. Nurses are doing what nurses do. They build relationships in the community, and they build trust. They fill the gaps. They understand the strength and value of family,” she said.

The same approaches used in urban areas can be used in rural settings when tailored and targeted for the community. These include personal engagement and communicating via phone, Zoom, and telehealth technologies. Residents in rural communities are used to communicating via these methods because of the distance factor, even more so since the pandemic. Ferrans suggests creating videos specifically for the rural audience and their concerns.

Nurses can guide people to resources, allay their fears, confront misconceptions, direct them to safety net resources, get them fast-tracked to medical care, and connect them to free or low-cost screening programs and diagnostic follow-ups. “Nurses are doing this work, we just need more,” Ferrans said. “They have a unique role and the tools in their pocket. We have reason for hope.”

Carnahan’s work also focuses on rural disparities from a holistic approach, including working on Centers for Disease Control and Prevention (CDC)-funded programs for breast and cervical cancer screening and early detection and cancer prevention program evaluations for the Illinois Department of Public Health, and the development and implementation of a community engagement strategy for the forthcoming 2022-2027 Illinois Comprehensive Cancer Control Plan. She works in Chicago but maintains connections in the rural space and is working on a number of statewide evaluation projects. Through her work, Carnahan found that local programs often do not go far enough to address the financial disparities of underinsurance, but national programs are in place to help meet these gaps in coverage. The National Breast and Cervical Cancer Early Detection Program is one example.

“Nurses are positioned to facilitate the linkage between patients, programs, and resources,” Carnahan said.

In rural communities, some of the outreach and support services available provide transportation to screening services, which can address one of the barriers to care. When patients worry about who will pay for a biopsy if needed, nurses can discuss the different available resources and ensure patients’ financial concerns are addressed. Carnahan urges use of telehealth for risk assessment, for which primary care nurse involvement can be helpful. Partnering with public health nurses and helping develop and sustain a strong nursing workforce will be vital as the fallout from COVID-19, including delayed screenings, becomes more evident.

Marsha Woodall, DNP, MBA, RN, is a professor and Nurse Administrator Division chair at Madisonville Community College in Kentucky. She is the lead author of an article on improving education and screening in a rural population.

 Her insight on improving cancer screening in rural settings demonstrates how impactful interventions can be when using a carefully targeted and
tailored approach.

Woodall had participated in rural community outreach before, handing out pamphlets and informational brochures, signing up residents for screening, and chatting with community members during monthly events. Her booth featured a bagged cancerous lung that residents could see and touch, along with a walk-through depiction of a real colon with cancerous nodules. Although the approach was attention grabbing and engaging, follow-through was poor in response to screening tests handed out.


For her doctoral project, Woodall chose to employ a different and much more effective approach. She scheduled a meeting with the Madisonville mayor and asked for permission to visit every city department over 3 weeks to provide education about colorectal cancer. Focused on this target population, Woodall, along with a nurse navigator from Baptist Health Deaconess Madisonville, educated 193 city employees at the sewer plant, trash, water, and electric departments. Sessions were scheduled to align with department meetings during day, evening, and night shifts, making it convenient for employees to attend. They provided basic education and written materials about colon cancer. Pre- and posttests were completed to assess change in knowledge.

“They seemed to really be engaged,” Woodall said. “A few shared stories of a relative or friend that had been diagnosed with colon cancer and spoke out about the importance of screening.”

Half the attendees took home fecal immunochemical tests provided by the oncology nurse navigator, which detect occult blood in the stool. Twenty-nine submitted their tests, a return rate double that of the earlier community booth event. Eight tests were positive and were referred for follow-up.

Woodall encourages nurses to make it easy for rural residents to learn about cancer and participate in cancer screening. “Make it as hassle free and convenient as possible,” she said. She also stresses the importance of collaboration.

“It takes a team effort, but increasing cancer screening in rural communities is absolutely doable by utilizing a targeted approach and exercising persistence.” 

Preventing and treating cancer in rural America. CDC. April 24, 2018. Accessed November 10, 2021. https://www.cdc.gov/ruralhealth/docs/Policy-Brief-Cancer-H.pdf

Cancino RS, Su Z, Mesa R, Tomlinson GE, Wang J. The impact of COVID-19 on cancer screening: challenges and opportunities. 

Carnahan LR, Abdelrahim R, Ferrans CE, Rizzo GR, Molina Y, Handler A. Rural cancer disparities: understanding implications for breast and cervical cancer diagnoses. 

. 2021;25(5):10-16. doi:10.1188/21.CJON.S1.10-16

Woodall M, DeLetter M. Colorectal cancer: a collaborative approach to improve education and screening in a rural population. 

. 2018;22(1):69-75. doi:10.1188/18.CJON.68-75

Longer travel times and fewer available resources can make rural cancer care particularly challenging, but oncology nurses may play a crucial role in promoting screenings in these areas.  

Collaboration, Determination Improves Cancer Screenings in Rural Areas

In a June 12 ruling, a US district judge in Texas rejected a lawsuit filed by 117 Houston Methodist Hospital employees after they were placed on unpaid leave for refusing the hospital-mandated COVID-19 vaccination.

The judge, in support of the hospital, cited a 1905 US Supreme Court case that ruled a Massachusetts mandate requiring residents be vaccinated against smallpox was justified to protect public health.

The Texas case, recent FDA approval of the Pfizer vaccine, and emergence of the Delta variant helped pave the way for health care organizations throughout the country to require proof of COVID-19 vaccination as a condition of employment.

Many states are now requiring COVID-19 vaccination for state employees and facilities, and hospitals, colleges, and industries around the country are rapidly following suit.

 Employees are expected to be fully vaccinated or obtain an exemption by an established deadline to avoid job termination. Although some organizations, in lieu of vaccination, offer regular testing or other interventions for reluctant employees, others do not.

In May, Montana Governor Greg Gianforte signed House Bill 702 into law; with certain exceptions and exemptions, it protects an individual’s vaccination status, prohibits employers from requiring disclosure of status, and bars vaccination mandates and passports.

 Arizona Governor Doug Ducey recently signed Executive Order 2021-18, which prohibits vaccine mandates and requires employers to pay out earned sick time for employees affected by COVID-19

With no national consensus in place, state and local governments, businesses, corporations, and health care organizations are left to adopt or adapt CDC recommendations, develop their own policies based on unique factors, or take a wait-and-see approach. Yet, as the pandemic continues its scourge across the globe and the push for vaccination (and booster shots) intensifies, implications of requiring (or not requiring) health care professionals to get vaccinated against COVID-19 warrant attention.

recently spoke with Arthur Caplan PhD, the Drs William F. and Virginia Connolly Mitty Professor of Bioethics in the Department of Population Health and founding director of the Division of Medical Ethics at NYU Grossman School of Medicine in New York, New York. When asked about his perspective on the vaccine mandates, Caplan said, “Although information and persuasion worked for many and incentives worked for a few, we still have a huge number of Americans unvaccinated.” He added, “We can’t afford to do that in a plague.”

Caplan believes mandates are needed to bring about the kind of coverage to not only get the health system out of the woods in terms of being overburdened with patients, but also to try to control the emergence of new variants in the US.

Yet health care workers who followed the rules, wore masks, and received their vaccinations are now told they must mask up, could still get infected, and could even transmit the virus to others.

Caplan says he understands the frustration resulting from mixed messaging. “The experts did not understand what the vaccine would do, which has led to doubt,” he said. “They still don’t know where the virus came from.” He wants health care workers to remember that the vaccine doesn’t kill the virus but that it works pretty well to keep people alive.

Although he doesn’t deny the existence of reasons to be resistant about getting the COVID-19 vaccine—such as its effect on fertility or lack of long-term information or data—Caplan says he believes the vaccines are safe.

The Year 1 COVID-19 Impact Assessment survey conducted by the American Nurses Foundation concluded that only 48% of respondents had received both doses of a COVID-19 vaccine. Of the 30% of nurse respondents who reported that they had not received the vaccine, 34% reported that they intended to receive the vaccine in the near future, 28% reported that they did not intend to receive the vaccine, and 25% were still undecided.

For nurses who were undecided or not in favor of receiving the vaccine, 66% cited a fear of short- or long-term adverse effects as their primary reason. Other common responses were a fear that vaccine development occurred too quickly and that not enough information was made available regarding safety, adverse effects, and administration.

Noting that vaccination opposition in general has been around a long time, Caplan wants health care workers to keep in mind that “while we are throwing out vaccines because so many won’t take them, people around the world are waiting. People who would love to have them.”

Ellen Rice Tichich, MFA, MSN, RN, NPD-BC is a freelance health writer and certified nursing professional development practitioner.

Vestal C. Hospitals start requiring workers to get COVID shots. Pew. Accessed August 30, 2021. 

https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021/06/21/hospitals-start-requiring-workers-to-get-covid-shots

 “Although information and persuasion worked for many and incentives worked for a few, we still have a huge number of Americans unvaccinated" - Arthur Caplan, PhD, Drs William F. and Virginia Connolly Mitty Professor of Bioethics, NYU Grossman School of Medicine. 

Should COVID-19 Vaccinations Be Required for Health Care Professionals?

The National Cancer Institute estimated that in 2020, 89,500 adolescent and young adult (AYA) patients (aged 15 to 39 years) would be diagnosed with cancer.

Receiving a cancer diagnosis at any age is troubling, but for the AYA population, the impact of cancer differs from that of pediatric and elderly patients. Oncology nurses can help meet the needs of their AYA patients by learning about their concerns and answering questions that may otherwise go unasked.

Donna Bell, MSN, RN, FNP-C, is a nurse practitioner at The University of Texas MD Anderson Cancer Center’s AYA program. The program, which was launched in 2019, provides a wide range of services designed specifically for adolescent and young adult patients with cancer. 

® spoke with Bell about the important role oncology nurses have when caring for the AYA patient.

“Cancer pulls AYA patients out of their peer groups and subsequently is very isolating,” Bell stated. “Expressing authentic compassion for what they are going through and asking meaningful questions makes it easier for them to talk about issues that matter. Nurses are well suited for these types of interactions.”

Bell offered some suggestions about the questions they might ask: “How are things going at work? What did you do this weekend? Who is your community? Are you having any sexual troubles?” AYAs often worry how cancer and cancer treatment will affect their independence, education, career, and fertility.

Questions related to these areas steer the conversation, guide interventions, and align appropriate referrals. Bell recommends that nurses be familiar with common concerns among AYA patients. “Employ a holistic approach. Look at the whole patient and not just the cancer treatment,” she said.

Patients may be concerned about the effects of cancer or cancer treatment on their ability to have children. Some may not have given the subject any consideration. Conversations about fertility and fertility preservation should be offered to all patients in this age group. These conversations are important and should address risk related to treatment and availability of options such as banking sperm or freezing oocytes.

Nurses can also be instrumental in helping AYA patients construct hope through goal setting, pathways thinking (routes for goal achievement), and overcoming barriers. A resiliency plan for meeting challenges can reduce anxiety and frustration. Hope-based interventions, virtual programming, and virtual support/activity groups have shown promise in improving quality of life, mental and physical health, coping skills, and pain tolerance.

Another area to address with AYA patients is educational/vocational planning. Referral to a vocational counselor can help patients plan their career trajectory around length of treatment, identify areas of flexibility, and perhaps recommend a change in course. “The disruptive nature of cancer can be an opportunity for growth,” Bell said. “Some young people are spurred to reevaluate their choices and in doing so, discover an interest they had not previously considered, such as a career in nursing or medicine.” The MD Anderson AYA Program website offers information and resources on these and other topics for patients and professionals.

By taking the time to understand the unique needs of the adolescent and young adult population, nurses can provide assurance to patients that their life matters, their needs matter, and they are not alone.

1. Cancer stat facts: Cancer among adolescents and young adults (AYAs) (Ages 15-39). National Cancer Institute. Accessed December 13, 2020. 

https://seer.cancer.gov/statfacts/html/aya.html

2. Nicoll I, Lockwood G, Chan RJ, Grundy P, Fitch MI. et al. What do adolescents and young adults perceive is the main challenge during the transition to survivorship? 

2020;30(4):309-313. Accessed December 13, 2020.

3. MD Anderson Cancer Center. Adolescent and Young Adult Program website. 

Adolescent and Young Adult Program | MD Anderson Cancer Center

Nurses can create an open dialogue for AYA patients to discuss cancer-related issues. 

Adolescent and Young Adult Patients Face Unique Needs, Challenges

A nationwide nursing shortage is not only reducing the amount of time oncology nurses have to spend with their patients, but also increasing the risk for burnout and compassion fatigue.

 With the need for cancer care projected to outpace the supply of practitioners by 2025, nurses should use their time efficiently and take measures to avoid burnout.

Nurses at Kaiser Permanente in San Francisco, California took on this problem when they tackled staff inefficiencies in the infusion center by reconfiguring assignments and shift start times. They assigned each nurse to 3 chairs, located together, thereby creating teams in adjacent areas to simplify medication checks and break coverage. In addition, they staggered shift start times by 30 minutes, providing nurses with needed prep time.

Survey results collected after the pilot run (45 shifts) and presented at the 44th Annual Oncology Nursing Society (ONS) Congress showed that nursing satisfaction with patient location, ability to see patients, handoffs to colleagues, and prep time skyrocketed.

 Overall patient satisfaction also improved. The results were impressive enough that plans were made to implement the new workflow throughout the rest of the clinic.

Reducing patient wait times was a project goal set by nurses at the Adult Infusion and Medical Clinic at UF Health, in Gainesville, Florida.

 They recognized that communication problems were delaying treatment start times due to unsigned, incomplete, or unclear orders. Electronic health record dashboard reports and secure messaging were used along with interdisciplinary education, intervention meetings, and communication cards, to reduce patient treatment delays by an average of 6.5 minutes. This quality improvement measure also increased communication within the team. By making a few meaningful changes, the nurses realized a significant difference in workflow and improved satisfaction for patients and staff alike. With less time available for patients, and growing demand for cancer care services, nurses may find themselves suffering from emotional exhaustion, compassion fatigue, or burnout. Victoria Reiser, BSN, RN, ONC, and Judy Zedreck, DNP, MPM, NEA-BC, work at the University of Pittsburgh where they developed personalized self-care toolkits for combating compassion fatigue among nurses at 2 oncology units in the teaching hospital.

The toolkits were rarely used, so they sought to uncover barriers to self-care through focus group discussions based on 4 main themes: leadership, work schedule, acuity and staffing, and personal barriers. They presented the results of their project at the ONS Congress in 2019.5 “Nurses are always putting their patients first,” Reiser shared in a recent interview with 

. “They know what compassion fatigue is, and they know what they are doing that puts them at risk, but they really want to be there. They want to take care of their patients.” Reiser says she believes that nurses need self-care to not take them away from the bedside. Rather, that care needs to be built into daily practice, beginning with orientation. “We need to teach nurses to nurture their young nurses and show them what those nurturing habits are.”

Zedrech, who is program coordinator for the university’s Doctor of Nursing Practice Health Systems Executive Leadership Program, agrees and urges administrators and leaders not to assume they know what nurses need. “Whether it’s another nurse, an aide, equipment, or other things, nurses want validation from leadership that the work they do is important, but they have to communicate on the same plane.” She sees burnout not so much as a by-product of the work or the intensity of the job, but of nurses not having the tools they need to do the work they love.

Still, there are ways to help nurses avoid fatigue and burnout. First, return to the basics. Make sure nurses are taking their breaks, especially for meals. Encourage coworkers to talk to each other about their stress and with leadership about solutions. Help staff integrate self-care habits into their work day instead of making it another task to complete. Schedule breaks and make time off the unit part of daily practice. Recruit informal leaders as role models of self-care. The solution does not have to be groundbreaking.

When it comes to fatigue, nurses don’t want to complain. They want to be there for their patients who are suffering and struggling. Reiser shared that “compassion satisfaction is stronger than compassion fatigue. Nurses love this job, and they stay because they derive a lot of satisfaction from caring for these patients.” Zedreck concurred, adding that “people stay when times are rough—when they trust leadership is doing the best they can do.”

1. Toh SG, Ang E, Devi MK. Systematic review on the relationship between the nursing shortage and job satisfaction, stress and burnout levels among nurses in oncology/haematology settings. 

. 2012;10(2):126-141. doi: 10.1111/j.1744-1609.2012.00271.x.

2. Chandak AN, Loberiza FR Jr, Deras M, Armitage JO, Vose JM, Stimpson JP. Estimating the state-level supply of cancer care providers: preparing to meet workforce needs in the wake of health care reform. 

. 2015;11(1):32-37. doi: 10.1200/JOP.2014.001565.

3. Beringer K, Jansen C, Tejada M, Wong A. Improved nursing infusion workflows, including chair assignment grouping, increase nurse and patient satisfaction. Presented at: ONS 44th Annual Conference; April 11-14, 2019; Anaheim, CA.

4. Pesata B, Farrar R, Harris L. Improving speed, efficiency, and communication of medical oncology patients receiving infusion treatments. Presented at ONS 44th Annual Conference; April 11-14, 2019; Anaheim, California.

5. Reiser V, Zedreck J. Barriers to self-care and combatting compassion fatigue among oncology nurses. Poster presented at: 2019 Creating Healthy Work Environments Conference; February 2019; New Orleans, LA. bit.ly/2PoedbB.

Improving Compassion Satisfaction Amid a Nursing Shortage

In 2013, Yousuf Zafar, MD, and a colleague introduced the term "financial toxicity" in a 2-part article addressing the burdensome cost of cancer care. They discovered that for patients, even those with insurance, not only did chemotherapy have a physically toxic effect, but a financial one as well. An aging demographic, rising drug costs, higher insurance premiums, and skyrocketing deductibles were seen as largely to blame for dramatically increased out-of-pocket costs of care.

For many patients, the researchers found, the effects of financial toxicity were life changing— from canceling vacations to coming up with money for food and clothing. At the time, the medical community had no way to describe the impact this burden placed on patients. Zafar diagnosed the problem and gave it the name "financial toxicity" as a way to both identify and address it for what it truly was.

In an interview with Oncology Nursing News, Zafar discussed ways the OCM aims to reduce the cost of care and the opportunity that nurses have to impact patient outcomes while adapting to changes in practice resulting from the model. "Improving the patient experience, as the OCM intends to do," Zafar said, "can happen only when the cost of care is included as an integral part of cancer care moving forward."

For this to happen, he said, "the entire care team—particularly oncologists and nurses&mdash; plays a role...Among the providers patients prefer to talk to about their cost of care, the nurse ranks high, if not highest, on the list. If nurses are not asking patients about their ability to pay for treatment, then it is possible nobody else is either." Only after financial toxicity is recognized, can patients be linked with appropriate resources, such as financial assistance programs, drug coupons, and other options that exist. This is important, because even when patients receive value-based care, they still face high out-of-pocket costs. By linking value and quality with reimbursement, the OCM provides incentives to practices that focus on evidence-based care by reconsidering the use of high-cost, experimental drugs with uncertain or limited efficacy.

Although it is too early to tell how the OCM initiatives will impact the patient experience in the long-term, Zafar acknowledged that the goals of the model make sense, at least in theory: Attacking the problem of financial toxicity is a step in the right direction, and it begins by talking about it with as much concern and as routinely as the effects of cancer-killing drugs.

 Zafar SY, Abernethy AP. Financial toxicity, Part I: a new name for a growing problem. Oncology. 2013;27(2):80-81.

The Oncology Care Model (OCM) aims to reduce the cost of care and nurses can have an impact on patient outcomes while adapting to changes in practice resulting from the model.

Sticker Shock: How the OCM Hopes to Tackle Financial Toxicity

Last summer, nearly 200 oncology practices and 16 health insurance providers embarked on a collaborative new mission to transform the business of cancer care in the United States. Selected by the Centers for Medicare & Medicaid Services (CMS) to participate in a new Oncology Care Model (OCM), they will implement innovative methods of service delivery, care coordination, and financial accountability.

Simply stated, the model's goals are to improve quality and reduce cost. Achieving these goals, however, will require a commitment to, and compliance with, a complex process. The 5-year model is slated to run through June 2021, but its focus on providing accountable, patient-centered care is already a reality for nurses and other healthcare professionals practicing in oncology.

The OCM was released in February 2015 by the CMS Innovation Center to improve the access, appropriateness, and coordination of care for Medicare patients receiving chemotherapy through the alignment of financial incentives with practice. The 190 physician groups selected for inclusion were announced on June 29, 2016.

Dawn Hershman, MD, a medical oncologist and leader of the Breast Cancer Program at the Herbert Irving Comprehensive Cancer Center, Columbia University, explained some of the program essentials, including its 6 practice requirements in an interview with 

. For each 6-month episode of care, participating practices, which must be Medicare-enrolled and provide chemotherapy, will receive fee-for-services payments in addition to enhanced oncology services payments of $160 monthly.1 Episodes of care are triggered by initiation of chemotherapy and may be repeated as necessary throughout the program term. Performance-based payments will also be awarded according to quality improvement criteria and are intended to guide efficient, effective, and patient-centered collaborative practice.

24/7 patient access to qualified clinician

Comprehensive care planning incorporating the 13 components of the Institute of Medicine Care Management Plan

Treatment therapies compliant with nationally recognized guidelines

Use of certified electronic health record technology

Data-driven continuous quality improvement

OCM payment models are complicated and not the focus of this article, but it is important to note that financial incentives are not profit-enhancing; they are designed to reward practices that reduce the cost of care while maintaining and/or improving the quality of care delivered.

Participants in the model must demonstrate improvements and are required to report their efforts and results on a quarterly basis throughout the 5 years of the pilot performance reports to the practices outlining achievement measures according to benchmarking standards.

Hershman, although optimistic about the OCM, understands the challenges associated with providing high-value care: “Better quality does not always equate to lower cost.”

Practices may need to add members to the care team, such as patient/financial navigators, and IT and financial experts, thereby increasing existing costs, which may not be completely offset

by monthly service payments. Nonetheless, practices that, “significantly reduce per beneficiary total cost of care will see the largest rewards under the OCM.”

Although the OCM’s requirements are nonnegotiable, practices are encouraged to optimize the opportunity to receive performance-based incentives through innovation. The biggest

challenge may be meeting the requirements of the model without overspending.

Both oncology practice and payer interest in improving the efficiency and value of cancer care through this initiative surpassed expectations, according to the US Department of

Health and Human Services, which reported it received more than twice the expected number of practice applications. More than 3200 oncologists are now included in the project, covering

Program participants, including commercial payers, are listed on the OCM website.

 Practice participants range from solo oncologists to multiprovider systems located in rural, suburban, and urban settings throughout the United States. Annmarie Flannery, RN, the nurse manager of the OCM program at Montefiore Medical Center in New York City, said that the OCM “shines a spotlight on the notion of change and the importance of evolving the practice of care delivery.” Although practice at Montefiore was aligned with many OCM requirements prior to acceptance into the program, Flannery acknowledges that further improvements, such as adding OCM-specific social workers and enhanced IT data mining, will add to the center’s existing level of high-quality care.

Part of the performance-based payment methodology relates to quality, which in the OCM, focuses on 12 measures divided into 4 domains: (1) Communication and Care Coordination; (2)

Person- and Caregiver-Centered Experience and Outcomes; (3) Clinical Quality of Care, and (4) Patient Safety.

It is within these domains that oncology nurses do their best and most important work and where innovation finds opportunity.

Diane Baldwin, RN, of Mitchell Cancer Institute, and Anne Marie Rainey, RN, MSN, CHC, of Clearview Cancer Institute, whose centers are both located in Alabama, each have seen how

these measures promote high-value care. The communication/care coordination domain, for example, addresses unnecessary hospital and emergency department (ED) admissions. Baldwin

explained how preemptive interventions by oncology nurse clinical care coordinators make a difference and improve the patient experience.

“Prior to the OCM, we had lay navigators—specially trained individuals from various backgrounds, such as social work, education, or counseling&mdash;who helped patients with social support, advanced care directives, transportation, etc. Since then, we have added clinical care coordinators as part of a collaborative effort, and they manage the clinical aspect of care&mdash;managing symptoms, triaging patients at home, and arranging same day appointments for hydration or other needs.”

Rainey, who is an OCM project lead, concurs on the important role of care coordinators, but adds that meeting the requirements of the model can be challenging, due in part to added documentation. One positive outcome, said Rainey, pertains to screening for depression, which is 1 of the measures within the person/caregiver—centered experience and outcomes domain.

Prior to the OCM, depression screening happened, “most of the time,” but implementation of the model enhanced awareness. Now they make a concerted effort to routinely screen all

chemotherapy patients, even those who are not eligible for Medicare.

“We make sure we are addressing whatever nuances of their healthcare are important to them,” Rainey explained. Some clinical staff responded to the additional screening mandates by questioning the change. Explaining that not only is depression screening required, but also why—to provide better care&mdash;encouraged staff buy-in and helped them to fully engage with the work being done.

The remaining domains (clinical quality of care and patient safety) focus on appropriate chemotherapy regimens for various types and stages of prostate, colon, and breast cancer and

accurate documentation in the medical record of the patients’ current medications.

Baldwin and Rainey agree that although it is still too early in the model to determine how the cost-reduction aspect of the model will work in the long term, they do know that by reducing

unnecessary hospital and ED admissions with early and proactive intervention, they are able to rein in those costs and provide more effective care management for their patients.

Rainey also praises supportive efforts offered by OCM project leaders geared to help facilities as they progress through the model. Participating in focus groups and reviewing released case

studies have been very beneficial for providers in knowing what other practices have found works or does not work well. In this sense, collaboration is more than an OCM requirement; it

As the OCM pilot continues to evolve and practices find and share their successes, nonparticipating cancer centers, and the care community in general, can benefit from following

their journey, becoming familiar with the model’s key components, and scrutinizing their own delivery of services. Much remains to be learned and gained through creativity, collaboration, and commitment to excellence.  As Flannery stressed, “The Oncology Care Model gives us direction with our care and helps us focus on practicing our calling.” 

Center for Medicare & Medicaid Services. Oncology Care Model. Fact Sheet. go.cms.gov/29cD7az. Accessed April 26, 2017.

The Advisory Board Company. CMMI’s Oncology Care Model. Published June 20, 2016. bit.ly/2pmB8XH. Accessed April 26, 2017.

The ASCO Post. HHS Announces Physician Groups Selected For An Initiative Promoting Better Cancer Care. 2016. bit.ly/2p4KUgm. Accessed April 3, 2017.

Center for Medicare & Medicaid Services. Oncology Care Model. innovation.cms.gov/initiatives/Oncology-Care. Accessed April 26, 2017.

Center for Medicare & Medicaid Services. OCM Performance-Based Payment Methodology. innovation. cms.gov/Files/x/ocm-methodology.pdf. Published December

Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. bit.ly/2qfEPeT. Accessed April 26, 2017.

Nearly 200 practices across the United States are piloting an ambitious new mmodel that focuses squarely on delivering high-quality, lower-cost, patient-centered care.

Ellen Tichich, MFA, MSN, RN-BC