It is normal for a person receiving a cancer diagnosis to experience a wide range of emotions. Fear, anxiety, sadness, and depression are among the most prevalent. The type of cancer, stage, and treatment modality may all affect a patient’s emotional state. It seems logical to conclude that patients with prostate cancer—generally regarded as highly treatable and the most common type of cancer among men&mdash;suffer a relatively lower rate of psychosocial distress compared with people receiving diagnoses that typically have poorer prognoses and outcomes. However, men with prostate cancer commonly feel significant anxiety and depression.

 and Us TOO International surveyed 633 patients with prostate cancer regarding their feelings of anxiety and depression. Seventy-seven percent of the respondents said they had experienced symptoms of anxiety or depression following diagnosis, 94% thought it was normal for patients with prostate cancer to feel anxiety and depression, and 97% felt there was a need to help patients recognize these symptoms and find treatment for them.

Men tend not to seek help for psychosocial issues and notably less often than women do. This is borne out by survey results that suggest men with prostate cancer would benefit from support groups; however, they seldom attend them, and other data show that women outnumber men 3:1 in cancer support groups.

There are myriad reasons for this. Power, physical strength, dominance, control, and toughness are the typical qualities that define the role of a man in society. For men, neediness and asking for help are considered signs of weakness. Men do not like to appear emotionally vulnerable; instead, they often expect that feeling emotions should fall to a spouse, partner, or relative. Stereotypically, men are expected to be logical and make decisions based on the analysis of information. When they do reach out to their doctors and nurses, it is often for support of the informational, not emotional, variety.

Because prostate cancer affects the reproductive, urinary, and gastrointestinal systems, embarrassment and shame are often attached to this diagnosis. Already feeling shamed by being seen as a patient (and therefore in a weakened state), adverse events such as incontinence and erectile dysfunction may exacerbate anxiety over what a man’s future level of functioning in these areas might be. All of these factors may lead a patient to hide his feelings even more deeply from medical staff and to refrain from divulging his feelings to his family and loved ones.

It is important for clinicians to create an environment where men feel comfortable sharing their concerns. One way to do this is to tell men with prostate cancer that it is normal to feel a certain amount of anxiety and sadness and that these feelings can be mitigated by psychosocial support such as counseling and support groups. Also, study data show that patients who receive strong emotional support may benefit from a protective effect on health outcomes.2 These patients are more likely to follow their treatment plans, whereas patients who are depressed might be inclined to feel treatment is useless or give up on it.

An important first step to helping a male patient with prostate cancer cope with emotional issues is to help him identify his feelings: Determine whether he is experiencing anxiety, depression, or both, and note that anxiety and depression are not the same and may require different interventions and treatments. A certain amount of anxiety occurs in daily life for most people. This “situational anxiety” occurs frequently for patients with cancer before having a medical test like a scan or a treatment like radiation. This is different from pervasive anxiety that interferes with daily functioning and may include symptoms such as gastrointestinal distress, chest pains, elevated heart rate and blood pressure, or suddenly breaking into a sweat.

Depression is a medical disorder characterized by feelings of sadness and a loss of interest in activities once enjoyed, and it may be characterized by hopelessness, despondency, abnormal sleep or eating habits, loss of interest in sex, feelings of worthlessness, the desire to harm oneself, or suicidal thoughts.

Men with prostate cancer may already feel diminished in the eyes of others and, subsequently, may reject the interventions that can help mitigate anxiety and depression. Support groups, individual counseling, or a prescription for anti-anxiety or antidepressant medications may be highly useful, but these solutions are sometimes seen by men as further signs of weakness. Nevertheless, all of these options should be made known to patients with prostate cancer. It can be helpful to reassure men with this diagnosis that their innate distaste for these interventions is normal and to make clear that these interventions are often helpful and may lead to better quality of life and improved medical outcomes.

Andrew Chesler, MSW, LMSW Andrew Chesler, MSW, LMSW, is Men’s Cancers Program coordinator at CancerCare.

Articles

Partner Perspectives

Men tend not to seek help for psychosocial issues and notably less often than women do.

The Importance of Identifying Anxiety and Depression in Men With Prostate Cancer

Distance caregiving is a relatively new phenomenon associated with today’s increasingly mobile society. Distance caregivers (DCGs)—those unable to attend a family member’s oncology appointments due to distance&mdash;often miss out on supportive services offered to the patient and local family and must rely on secondhand information to keep track of the patient’s plan of care. The Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio, is testing a program to address the needs of this unique demographic by incorporating videoconferencing into patient visits.

Significant travel time and cost prevent DCGs from being able to see the patient and attend oncology appointments regularly. DCGs report spending an average of $392/month on travel and out-of-pocket expenses related to caregiving and consistently missing days of work.

 On the rare occasions DCGs can visit for an appointment, their presence can be disruptive because they have not been in the loop from the beginning.

DCGs experience higher levels of anxiety and mood disturbance compared with local caregivers. On top of dealing with the expected stress of having a loved one who received a diagnosis of cancer, DCGs describe feelings of uncertainty, guilt, anxiety, and stress specifically related to their distance from the patient.

These poor psychological outcomes not only negatively affect the DCGs’ lives but also hinder their ability to provide meaningful support to the patient and local family.

Videoconference technology may be an effective way for DCGs to both be “present” for important discussions between the patient and oncologist and avoid the practical and financial burdens of missing work and traveling to attend appointments in person.

Investigators at the Frances Payne Bolton School of Nursing are testing 3 technology interventions: individualized coaching, videoconferencing for oncology appointments, and a DCG website. Coaching sessions are delivered via videoconference with an advanced practice registered nurse or licensed independent social worker. During 4 monthly meetings, DCGs are given tailored informational and emotional support to help them navigate the healthcare system and advocate for their loved one from a distance. The oncology appointment videoconferencing allows DCGs to connect during the patient’s appointments with the medical oncologist over a 4-month period. They are able to see the patient, ask the oncologist questions, and participate in discussions as if they were attending in person. Finally, the website has links to information and resources relevant to DCGs of patients with cancer, including a video tour of the cancer center where their loved one is receiving care. Patients and DCGs answer surveys about distress, anxiety, and depression at baseline, 4 months (end of intervention), and 6 months (2 months post intervention). In addition, DCGs answer questions to assess self-efficacy, caregiver burden, and emotional support. Patients, local caregivers, DCGs, and oncologists provide feedback at the end of the intervention to share their perceptions of how the videoconferencing affected the appointments.

As of this writing, 301 patient-DCG dyads have been enrolled out of an anticipated final sample size of 419. Patients have a mean age of 65 years old, and the most common diagnoses are gastrointestinal (31%), breast (21%), and hematologic (18%) malignancies. DCGs are, on average, 46 years old, white (65%), college educated (75%), an adult child of the patient (66%), and employed full time (72%). They live a median distance of 402 miles away from the patient, with the farthest living in Asia. Implementation has been successful, with research staff successfully integrating the videoconference intervention into 32 outpatient oncology clinics. The technology has been well received by patients, local family, DCGs, and clinical staff.

At baseline, DCGs reported a mean distress score of 4.34 (SD = 2.66) on the National Comprehensive Cancer Network (NCCN) distress thermometer (0-10 scale of distress felt in the past week). According to the NCCN Guidelines for Distress Management, a score of 4 or higher merits a referral to social work or counseling services.

 DCGs had a mean anxiety score of 55 and depression score of 51 on the 4-item Patient-Reported Outcomes Measurement Information System questionnaires. Scores of ≥55 are considered outside the normal range.

 Over half of DCGs reported at least some interference with both work (54.5%) and personal activities (55.3%) because of their caregiving responsibilities.

These preliminary findings, together with previous research, show that this population of caregivers has unique stressors that often go unaddressed. They are also underused as both a source of support for the patient and a source of information for the clinical staff, particularly for patients who do not have local family to attend oncology appointments with them.

Videoconferencing provides a simple and feasible way to give DCGs the opportunity to support their loved ones and play a role in clinical decision making from afar. Cancer is a disease that affects the entire family, and videoconference technology is a promising tool for uniting families with clinicians.

1. Koerin BB, Harrigan MP. P.S. I love you: long-distance caregiving. J Geront Soc Work. 2003;40(1-2):63-81. doi: 10.1300/J083v40n01_05.

2. Mazanec P. Distance caregiving a parent with cancer. Semin Oncol Nurs. 2012;28:271-278. doi: 10.1016/j.soncn.2012.09.010.

3. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: distress management. rnccn.org/professionals/physician_gls/pdf/distress. pdf. Published February 23, 2018. Accessed January 16, 2019

4. Wagner LI, Schink J, Bass M, et al. Bringing PROMIS to practice: brief and precise symptom screening in ambulatory cancer care. Cancer. 2015;121(6):927-934. doi: 10.1002/cncr.29104.

Eric Blackstone, MA, is a research assistant; Sara L. Douglas, PhD, RN, is the Arline H. and Curtis F. Garvin Professor in Nursing Excellence and assistant dean for research; and Amy R. Lipson, PhD, is a senior research associate at the Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio.

Videoconferencing Empowers Distance Caregivers to Be More Involved in Care

As a pediatric hematology/oncology nurse at Helen DeVos Children’s Hospital in Grand Rapids, Michigan, Candie Ritsema, RN, MSN, PNP-AC, CPON, shares a special bond with her young patients with cancer. At the age of 12, Ritsema received a diagnosis of non-Hodgkin lymphoma and underwent chemotherapy and a bone marrow transplant in the same hospital where she now works.

“The nurses who cared for me when I was undergoing cancer treatment had a lasting impact on me,” Ritsema says. “I remember being so impressed by how they managed my symptoms and served as my advocate.”

While many nurses become patients at some point in their careers, there are also patients such as Ritsema who are inspired to pursue a nursing career after spending significant time in the hospital.

After graduating from high school, Ritsema enrolled in nursing school and worked in both inpatient and outpatient oncology settings at DeVos. Ten years later, she returned to school to pursue her master’s degree and become a nurse practitioner. She now works in the oncology unit alongside some of the same doctors and nurses who once cared for her.

Because her colleagues are aware of Ritsema’s history, they sometimes ask if she can speak to a nervous child or their parents.

“I think that by sharing my story, I can offer patients and their families reassurance,” Ritsema says. “Every cancer journey is different, and I work to not make the conversation about me but to redirect it back to their own individual concerns and condition.”

Ritsema marvels at how cancer care has changed in the years since she was a patient and how many treatments are now done on an outpatient basis. Gone, too, are the days when cancer was considered an automatic death sentence.

At the age of 11, Michelle McGovern, RN, BSN, of Noblesville, Indiana, received her leukemia diagnosis. Although she had always been intrigued with the medical field, undergoing 2 years of aggressive chemotherapy as a child made McGovern hesitant to pursue a career in nursing. She instead majored in criminal justice and psychology and began working in the information technology field.

Although her life was good, McGovern said that she didn’t feel as though her career was making a difference in the lives of others. It wasn’t until 2011, when the 37-year-old mother of 2 received her second cancer diagnosis, that she began to seriously consider returning to school to pursue a career in nursing. “After my treatment ended, I felt a deep sorrow when I thought of how precious and short life can be,” McGovern says. “I didn’t want to have regrets about never pursuing my lifelong dream of going to nursing school.”

After enrolling in an accelerated nursing program, McGovern received her degree in 2016. She graduated with honors and began working at the Indiana University Health Simon Cancer Center in Indianapolis.

“I wanted to be the nurse every patient wants, the kind of nurse I had while going through my own cancer treatments,” McGovern says. While McGovern doesn’t always tell her cancer story to patients, she says it does come up and that being a survivor allows her to understand her patients on a different level.

“I know what it’s like to feel scared and afraid after being diagnosed with cancer because I’ve lived through it twice,” McGovern says. “I work hard to educate patients about every aspect of their care because I believe knowledge empowers patients and encourages them to become partners in their own care.”

McGovern says she explains to patients every step of their care such as why she’s administering an IV and how to care for their port. She has also written a book about her experiences, I Didn’t See This Coming: Breast Cancer at Age 37. Although she originally wrote the book for her son and daughter, she self-published it and it is available on Amazon.

“Writing about my cancer journey was a good outlet for me and helped me to come to terms with some of the anxiety and fear I was feeling after my second diagnosis,” McGovern says.

A TODDLER WITH A DIRE DIAGNOSIS BECOMES AN ONCOLOGY NURSE

Maria Kirkland, RN, BSN, was only 18 months old when her parents were told she had stage IV cancer. What her doctor initially thought was a stomach virus turned out to be a mass in her abdomen, a Wilms tumor, which is a type of kidney cancer.

Some of Kirkland’s earliest memories involve being a patient at Cincinnati Children’s Hospital Medical Center and the care she received from the oncology staff. She was in and out of the hospital receiving radiation and chemotherapy. It wasn’t until she turned 4 that doctors declared her cancer-free.

“I have vivid memories of nurses sitting with me and coloring pictures and sneaking me cheese and crackers,” Kirkland, 36, says with a laugh. “Actually, I thought they were sneaking me snacks, only to find out years later, they were permitted to give those to patients.”

In high school, Kirkland began volunteering with the American Cancer Society, a role that confirmed her desire to pursue a career in nursing. “I really felt the desire to give back and to help pediatric patients,” she says.

After graduating from nursing school, Kirkland returned to work at the same hospital where she received care. Now a mother of 2 daughters, ages 4 and 5, Kirkland works on a per diem basis in the ambulatory ear, nose, and throat department at Cincinnati Children’s Hospital Medical Center and has her own photography business. One of her recent projects was photographing 6 families, all at different stages of their infertility journey, to raise awareness of National Infertility Week, held each April. She has also photographed children as a volunteer with the Pray~Hope~Believe Foundation, a nonprofit that raises funding and awareness of childhood cancers.

Infertility is a topic that Kirkland is all too familiar with. After undergoing years of chemo and radiation, she was told that she would not be able to have children on her own. Yet Kirkland beat the odds.

“Being hospitalized with cancer when you’re a child can be a scary experience,” Kirkland says. “I remember calling on the nurses when I was scared, and I hope I can be there for other children.”

Careers

Former patients find their calling as oncology nurses.

Paying It Forward: The Road to an Oncology Nursing Career

®,we welcome our new editor in chief, Deborah A. Boyle, MSN, RN, AOCNS, FAAN, whose extensive nursing knowledge, combined with her experience as a writer and editor, will lead us into a new era of publishing excellence. Her first article, “

Oral Oncolytics Are Changing Nursing Practice

,” cuts to the heart of an issue of concern to many nurses: how their jobs are changing due to the use of oral therapies for cancer.

Our cover story highlights an innovative program that has been growing for years to fill the gap that exists in 

nursing education around end-of-life care

. The End-of-Life Nursing Education Consortium (ELNEC) was born from a desire to ensure that patients at the end of their lives receive appropriate pain relief and comfort. In addition to this goal, another has emerged over the last several years: providing palliative care for patients earlier in their cancer journey.

Pam Malloy, MN, RN, FPCN, FAAN, project director and co-investigator at ELNEC; Betty Ferrell, PhD, MA, RN, FAAN, FPCN, CHPN, who helped found ELNEC; and others share how the program educates nurses about palliative care, the benefits of early implementation, and ways to address barriers that might prevent patients from achieving their objectives with the time they have.

This month’s feature article reveals what oncology nurses say when others ask, “

” A new Careers column spotlights nurses who were inspired to choose their profession because of experiences they had as patients with cancer. In another new column, Voices, Jean Sellers, MSN, RN, administrative clinical director, UNC Lineberger Comprehensive Cancer Center, shares her personal experience as a caregiver to her father during his illness and how a compassionate nurse opened her eyes to what a “good death” could look like. Articles from our partners explore videoconferencing for distance caregivers, and how to identify anxiety and depression in men with prostate cancer.

This issue’s Continuing Education section covers news and developments from the 2018 American Society of Hematology Annual Meeting in the areas of myelodysplastic syndrome, acute myeloid leukemia, chronic lymphocytic leukemia, multiple myeloma, and acute lymphoblastic leukemia.

As always, we hope you find this issue educational and informative. Thank you for reading, and feel free to share these articles with your colleagues on social media using the hashtag #OncNurseConnect.

From the Chairman

“This month’s feature article reveals what oncology nurses say when others ask, ‘Isn’t your job depressing?’”

Palliative Care Is Not Just for End of Life

When oncology nurses tell people what they do, they often hear, “Oh, that must be so depressing!” Or, “I could never do something so depressing!”

® asked readers to share their answers, and not surprisingly, they were as inspiring as the nurses themselves. Respondents have an easy time ignoring the “depressing” comment because they genuinely find their work to be the very opposite— inspiring and deeply rewarding. Embedded in many a nurse’s response is faith that the job’s highs and lows will balance out and that both scenarios offer the chance to serve patients.

“I always thought that I would never want to be a ‘cancer’ nurse because ‘everyone’ dies. Well, no matter what area of nursing you are in, everyone does eventually die,” writes Beverly Trayer, RN, OCN, of Vidant Edgecomb Hospital, Tarboro, North Carolina, on Facebook. “I celebrate with them when they graduate from their chemotherapy regimens, and I am empathetic when they have a [recurrence]. It is a privilege to be a part of their lives during one of the most difficult times.”

Some nurses say they point out that advances in cancer care mean most of their patients aren’t terminal. Others, however, don’t bother justifying their career choice.

“For years, I offered a brief detailed response of the strides we’re making in the field. Now I just say, “It’s what I was born to do. It’s where I belong,” writes Michele Daddario, BSN, OCN, RN, on Facebook. Daddario works at Holy Name Medical Center Teaneck, New Jersey, and Chilton Medical Center, Pompton Plains, New Jersey.

Donna Clark, RN, BSN, OCN, clinic nurse at Mitchell Cancer Institute in Fairhope, Alabama, reports via Facebook that she’s come up with an answer that ends that line of questioning. “When queried if I find oncology nursing depressing, I reply back a quick ‘No.’ My path to a 32-year career as an oncology nurse started as a youngster when God deep-rooted it into my soul. Oncology nursing chose me.”

Some nurses say they have fine-tuned their responses over the years.

“At first I found it hard to know how to respond—how to explain something that I did not yet understand myself,” says Kate Wakelin, BS, RN, a nurse from Australia who has a graduate degree in psycho-oncology. “I struggled with guilt that my patients were so ill, and yet here I was, lucky enough to draw the ‘healthy’ straw. Over time, I’ve realized that guilt does not help my patients, and just disables me from being able to work effectively. I’ve learned instead to become deeply grateful for what I have, and for the constant reminders that my patients provide to live every day to the [fullest] (as corny as that sounds)!”

Nurses cite the very challenge of helping patients face cancer as the factor that makes their job especially rewarding: They know their patients are fighting for their lives, and they feel honored to be alongside them precisely when the stakes are so high.

“Yes, sometimes there are tears—sometimes happy tears and sometimes sad tears...but the reality that I could make a difference during some of the most crucial moments in a patient’s life is humbling and an absolute honor,” oncology nurse navigator Kim Coy, RN, OCN, Columbus Regional Health, Columbus, Indiana, comments on Facebook.

Some nurses say they find it helpful to consider the motive behind that awkward question. When people think about cancer, they may be recalling the painful emotions they felt dealing with a friend or family member’s cancer, suggested Wakelin. “It’s hard for them to imagine how it might be for someone to actually work in this field and how that could be different from their own personal experience.”

That is not to say the job can’t take an emotional toll. Oncology nurses are at higher risk for depression.

“Yes, it is depressing,” Marlon Garzo Saria, PhD, RN, AOCNS, FAAN, said in an email interview with Oncology Nursing News®. Saria is an oncology clinical nurse specialist and nurse scientist for the Inpatient Oncology and Caritas concierge suites at Providence Saint John’s Health Center, Santa Monica, California. “But when you see the bigger picture, you see resilience...and strength...and hope...and family...and friends...and love...and acceptance...and peace.”

Perhaps what sets oncology nurses apart from their questioners is a deep belief that shepherding a patient to a peaceful death isn’t a failure. Death doesn’t render their contribution worthless.

Krystal Johnson, RN, of Jefferson Hospital, Pittsburgh, Pennsylvania, posts on Instagram, “Even in end of life, being able to help someone who is suffering become comfortable and pass peacefully is far from depressing!”

Jenny Roberts, CNA, who is working toward a bachelor of science in nursing with a focus on oncology at Lane Community College, Eugene, Oregon, expresses similar sentiments on Instagram. “Those exiting this world deserve just as much love, support, and caring hands as those entering and remaining in it,” she said.

1. Wu S, Singh-Carlson S, Odell A, Reynolds G, Su Y. Compassion fatigue, burnout, and compassion satisfaction among oncology nurses in the United States and Canada. ONF. 2016;43(4):E161-E169. doi: 10.1188/16.ONF.E161-E169.

Feature Story

Some nurses share how they handle such remarks.

Tired of Hearing People Say an Oncology Nurse's Job Is Depressing?

Since 1971, after Cole et al reported activity of tamoxifen in patients with late-stage breast cancer, endocrine therapy (ET) has been the cornerstone of systemic treatment for hormone receptor (HR)-positive, HER2-negative breast cancer.1 Starting in the 1990s, aromatase inhibitors (AIs) were developed in the metastatic setting, showing superiority over tamoxifen in postmenopausal patients.2

As tamoxifen and AIs showed benefit in late-stage disease, these drugs also succeeded in the adjuvant setting. They are now routinely used to reduce the risk of distant recurrence.3 Recently, cyclin-dependent kinase (CDK) 4/6 inhibitors have been changing practice in advanced HR-positive breast cancer, with 3 agents (palbociclib [Ibrance], ribociclib [Kisqali], and abemaciclib [Verzenio]) now having FDA-approved indications for use with ET in the first-line setting.4-6

CDK4/6 inhibitors restrict progression through the cell cycle.7 Under normal conditions, the G1 to S phase transition is tightly regulated by the retinoblastoma (Rb) protein to halt abnormal growth. Through their interaction with cyclin proteins, CDK 4 and 6 phosphorylate and inactivate Rb, allowing G1 to S phase conversion. Inhibition of CDK4/6 by these drugs results in dephosphorylation of Rb and subsequent G1 phase arrest.8 Preclinical studies revealed that HR-positive breast cancer cellline growth was particularly sensitive to CDK4/6 inhibition. These studies also suggested synergism with ET.9 This observation led to a series of phase II and III trials utilizing these agents in the metastatic breast cancer setting.

Through the subsequent PALOMA-2, MONALEESA-2, and MONARCH 3 studies, palbociclib, ribociclib, and abemaciclib, respectively, were shown to drastically improve progression-free survival (PFS) in HR-positive, HER2-negative advanced breast cancer when added to AIs as first-line therapy.10-12 Additionally, PALOMA-3, MONALEESA-3, and MONARCH 2 all demonstrated significant improvement in PFS after progression on prior ET when these agents were added to fulvestrant (Faslodex).13-15 Abemaciclib, because of its increased potency and continuous dosing schedule, was also evaluated as monotherapy in a single-arm, phase II study.16 In addition, these drugs, while generally well tolerated, have similar toxicity profiles, which include fatigue, uncomplicated neutropenia, and diarrhea. QTc prolongation is seen only in ribociclib, and it is isolated to doses ≥600 mg daily.17 These trials are the basis for which the FDA approved these drugs for metastatic breast cancer, and their use has been widely adopted.

Although ET significantly reduces the risk of recurrent HR-positive/HER2-negative early breast cancer, the cumulative risk of distant recurrence has remained steady for decades and is worsened with increased nodal involvement.

18 Adjuvant systemic therapy has, therefore, not been optimized for these high-risk patients and it remains a clinically unmet need. In a series of open-label, phase III trials, CDK4/6 inhibitors are now being studied in the high-risk adjuvant setting.

PALLAS (NCT02513394), which opened enrollment in September 2015, is a phase III Alliance Foundation Trials, LLC/ Austrian Breast & Colorectal Study Group trial comparing adjuvant palbociclib plus ET of physician’s choice (including tamoxifen) with ET alone in stage II to III HR-positive, HER2-negative breast cancer.19 The dosing of palbociclib in PALLAS is the same as in the metastatic setting and will be administered for 2 years concurrently with ET. The primary endpoint is invasive disease-free survival (iDFS).

Patients must enroll within 12 months of diagnosis and within 6 months of beginning adjuvant ET. Also active and enrolling patients is monarchE (NCT03155997), a phase III National Surgical Adjuvant Breast and Bowel Project trial comparing adjuvant abemaciclib plus ET (including tamoxifen) with ET alone.20 MonarchE opened in July 2017 and is similar to PALLAS in terms of the primary endpoint, dosing schedule, and study drug administration period. However, monarchE excludes patients with node-negative disease and allows only up to 12 weeks of prior ET.21

NATALEE (NCT03701334) is an international, phase III trial led by Translational Research in Oncology and Novartis that will study adjuvant ET with or without ribociclib. NATALEE, like PALLAS, will include subjects with both anatomic stage II and III breast cancer and assess iDFS as its primary endpoint. However, NATALEE differs from PALLAS and monarchE in that ribociclib will be given over a period of 3 years instead of 2 and at a reduced dose of 400 mg, which may eliminate QTc prolongation.17 Additionally, up to 12 months of prior ET is allowed, and premenopausal women and men will be given a nonsteroidal AI plus goserelin (Zoladex) as ET in both arms (excluding tamoxifen). NATALEE opened for enrollment in December 2018 and along with PALLAS and monarchE will clarify the potential role of these agents in helping patients with curable breast cancer remain free of disease.

Nicholas Patrick McAndrew, MD, MSCE, is a hematologist oncologist in the Department of Medicine, Division of Hematology/ Oncology David Geffen School of Medicine at University of California at Los Angeles, California.

Clinical Trials in Progress

Although ET significantly reduces the risk of HRpositive/ HER2- negative early breast cancer, the cumulative risk of distant recurrence has remained steady for decades.

CDK4/6 Inhibitors Are Tested in Adjuvant Setting

There is an old proverb I’ve heard many times, attributed to several sources: “When the student is ready, the teacher will appear.” Although I was anything but ready to face the concepts of death and dying, in 1990, my teacher appeared. He was 59 years old and presented to the emergency department with sudden onset nausea and vomiting, along with a severe headache. I vividly remember standing outside the thin curtain separating his stretcher from where I stood, dumbfounded, as the doctor introduced the words “temporal mass” and “cerebral edema” into my life.

I wasn’t a nurse then. I was a mother to 2 young girls, and I was not prepared to take care of the man behind the curtain. He was the greatest man I had ever known, the same man whom I would forever refer to as my first patient. My father. His diagnosis was an aggressive glioblastoma, and he lived 9 months from that day. I was forced into a crash course on surgery, radiation therapy, and end-of-life care. His final 2 months were spent in my home. The man who defined a “good day” as 18 holes on a golf course was now confined to a hospital bed in my guest bedroom, wearing diapers.

My family came together with the best of intentions, but we never quite had the conversations we needed to have. Some family members refused to acknowledge he was dying, and others viewed hospice care as giving up. Some did not want to treat his pain with narcotics for fear he would become addicted. I was desperate to find anyone who could help me ensure that my father would not suffer, which finally led me to call the hospice answering service—and brought another teacher in to my life.

The hospice nurse returned my call later that evening. Nothing could have prepared me for the way it felt to feel so completely heard and understood in the midst of that terrifying time. She listened to my concerns, fears, and confusion. She became my lifeline and helped my family to have the difficult conversations exploring what a “good death” could look like and what my father would want.

These lessons started me on the path I still walk today, that of an oncology nurse who advocates for quality cancer care throughout the healthcare continuum. Caring for my father opened my eyes to what was missing and I believe is still lacking today: effective palliative care.

Palliative care addresses not only symptom management but also the emotional devastation that affects both patients and their families. Today, research shows that when palliative care is integrated earlier in the disease process, outcomes improve.1 Our ability to achieve better outcomes lies in how we engage in difficult conversations. This includes an understanding of what quality of life is and, most importantly, what it means to the patient.

Nursing continues to be ranked as the most trusted profession. It should not be a surprise, as many of us are able to share a sacred space the moment we enter into the darkness with our patients. Having difficult conversations is more effective when empathy is included. Theresa Wiseman, RGN, BSc(Hons) Psych, RCNT, RNT, PGDE, a nursing researcher and scholar at the University of Southampton in the United Kingdom, says that although providing empathy is not always easy, it is a skill that can be mastered.2 It requires that we:

3. Understand another person’s feelings

4. Communicate understanding of what was shared

Brene Brown, PhD, LMSW, a research professor at the University of Houston Graduate School of Social Work, says empathy reminds us that we are not alone. Her research focuses on authentic leadership and the healing power of listening while allowing someone to feel they are truly heard and valued. She speaks to the basic elements of what we need to master if we, as nurses and human beings, hope to provide compassionate, empathetic care. Understanding our own vulnerabilities is a critical first step.3 Our ability to foster difficult conversations can be instrumental to breaking through feelings of isolation and loneliness that our patients and families face. This can be hard work. By acknowledging the difficulty, we take the first step toward meeting them where they are.

We may not always be ready when our teachers appear. However, I have found that when I seek to learn and enhance my ability to be there for others, I’m surrounded by many experts. I’ve lost count of the number of teachers I have been grateful to meet along the way. My teachers include nursing colleagues, physicians, researchers, and especially patients who have trusted me with their deepest thoughts. I use every opportunity I can now to urge nurses to always remember the reasons they chose this career and to remember their teachers. I urge them to never stop learning.

Jean Sellers is an administrative clinical director at UNC Lineberger Comprehensive Cancer Center in Chapel Hill, North Carolina.

Voices

A hospice nurse shows me what a “good death” could look like.

Learning the Hard Way

In assuming the new role of editor in chief of 

®, I find myself thinking about the future. I challenge my fellow nurses to do the same.

Many years ago, I remember hearing a speaker tell the audience that just as you think back on what cancer care was like when you started your career and you consider all the changes that have occurred since then, you must assume that as you look forward, an equivocal amount of change will ensue. The take-home message is clear: Tomorrow’s cancer care and cancer nursing will not look like it does today. It is critical, then, that we take a proactive stance toward this evolution in care rather than a reactive one. Case in point: drug delivery of antineoplastics.

The significant trend toward the oral formulation of oncolytics has already started. Most likely, we are just realizing the tip of the iceberg. As of 2013, 30% of existing anticancer agents and another third of those in the development pipeline are orally formulated.

 With the administration of oral therapies comes the shift of drug delivery responsibility from the oncology nurse to the patient with cancer. We are in the midst of a real paradigm change within our specialty.

Patients are now expected to take their medications independently outside of the healthcare environment and selfmanage adherence and toxicity management. Less contact with the cancer care team correlates with decreased potential for face-to-face problem solving.

Overall adherence to oral oncolytics is estimated to be between 50% and 90%.

 How does this contribute to response rates and outcomes of clinical trials?

The reality is that we don’t really know how patients are managing their oral regimens. We have only cursory evidence of the reasons why patients do not take their medications as prescribed. Is it cost, poor memory, misunderstanding, literacy issues, or concerns about adverse events? Until we have assays that measure drug concentrations rather than relying on drug diaries and pill counts, there is no preferred way to measure adherence. Additionally, we must consider the phenomenon of overadherence. What about those who believe more is better? How does this contribute to toxicity burden and organ impairment? Although these “big picture” adherence issues are scrutinized and researched, we need to consider the following:

Don’t ask, “Are you having trouble taking your medications?” but rather, “What problems are you having?” Assume patients are not taking their medications 100% of the time. In one infusion center I visited, new patients were required to pick a “medication partner.” Usually this was an immediate family member or close friend whose designated role was to collaborate with the patient on their oral regimen adherence.

Nurses working with patients receiving oral oncolytics need to identify methods to keep in close contact with patients via email and video chat options. Nurse navigators are in a unique position to champion this effort. A recent review of interventions to improve oral chemotherapy safety and quality revealed that 2 of the interventions with statistically significant improvements were nurse coordinated; namely, implementing nurse phone calls within the first few days of treatment initiation and having standardized toxicity-management protocols that codified interventions for problems so nurses can provide consistent advice to patients.

In thinking about the future, we must also anticipate changes to the role of the ambulatory chemotherapy nurse. As infusion chair numbers fall, nurses may be asked, or expected, to assume the role of adherence nurse. The historic ambulatory medical oncology nurse role will most likely evolve from that of administrator to coach.

Novel trends in cancer therapeutics are happening here and now. We must embrace opportunities to consider new ways to nurse. These include fine-tuning skill sets for our roles as advocates, motivators, and problem-solvers within the mosaic of highly complex cancer care.

1. Geynisman DM, Wickersham KE. Adherence to targeted oral anticancer medications. Discov Med, 2013;5(83):231-241. discoverymedicine.com/Daniel- M-Geynisman/2013/04/25/adherence-to-targeted-oral-anticancer-medications. Accessed December 11, 2018.

2. Hershman DL. Sticking to it: Improving outcomes by increasing adherence. J Clin Oncol, 2016;34(21):2440-2443. doi: 10.1200/JCO.2016.67.7336.

3. IMS Institute for Healthcare Informatics. Global Oncology Trend Report: A Review of 2015 and Outlook to 2020. Parsippany, NJ: IMS Institute for Healthcare Informatics; 2016. morningconsult.com/wp-content/uploads/2016/06/IMSInstitute- Global-Oncology-Report-05.31.16.pdf. Published June 2016. Accessed Dec. 12, 2018.

4. Paolella GA, Boyd AD, Wirth SM, Cuellar S, Venepalli NK, Crawford SY. Adherence to oral anticancer medications: Evolving interprofessional roles and pharmacist workforce considerations. Pharmacy (Basel). 2018;6(1). doi: 10.3390/pharmacy6010023.

5. Cardoso E, Csajka C, Schneider MP, Widmer N. Effect of adherence on pharmacokinetic/ pharmacodynamic relationships of oral targeted anticancer drugs. Clin Pharmacokinet. 2018;57(1):1-6. doi: 10.1007/s40262-017-0571-z.

6. Zerillo JA, Goldenberg BA, Kotecha RR, Tewari AK, Jacobson JO, Krzyzanowska MK. Interventions to improve oral chemotherapy safety and quality: a systematic review. JAMA Oncol. 2018;4(1):105-117. doi: 10.1001/ jamaoncol.2017.0625.

Nurse's Notes

“We are in the midst of a real paradigm change within our specialty.”

The care of patients with cancer has come a long way since Betty Ferrell, PhD, MA, RN, FAAN, FPCN, CHPN, began her career in nursing. Back then, dedicated units for treating patients with cancer were a novel, even controversial, concept. Ferrell still remembers her first day on the job in 1977. The engineering department had come to install a sign that read “Oncology Unit.” The nurses were appalled, worried about the message such a sign would send and what patients would think. Cancer was still synonymous with dying, and they believed it was kinder to avoid mention of the disease than face an uncomfortable truth.

Although she didn’t know it at the time, that moment would become a defining one for Ferrell, as would a day not long afterward, when she paid a visit to the local American Cancer Society office looking for information about stomatitis, a common and miserable adverse event related to chemotherapy. It was there she came across a brochure by Jeanne Quint Benoliel. Ferrell was captivated by Benoliel’s work, which explained how failing to address the needs of the dying resulted in unnecessary suffering. This serendipitous introduction to palliative care influenced Ferrell’s work throughout her career and continues to do so through her passionate involvement with the End-of-Life Nursing Education Consortium (ELNEC).

Ferrell, along with Rose Virani, RN, MA as project director, helped found ELNEC, a program designed to educate nurses about palliative care and the needs of the dying. She is currently principal investigator at the program, a partnership between the American Association of Colleges of Nursing (AACN) and City of Hope in Duarte, California. ELNEC’s training of nurses ultimately improves palliative and end-of-life care for patients with cancer.

The first ELNEC training was held in 2001, thanks to a major funding grant from the Robert Wood Johnson Foundation. The curriculum was built using a holistic approach applicable across the age spectrum. Since then, the training has become more specialized and now includes curricula focused on the unique needs of pediatric, geriatric, critical care, oncology, and veteran populations.

In addition to national and international train-the-trainer offerings where attendees receive information and resources to train others at their facilities, ELNEC courses are also offered regionally and online, including programs for schools of nursing, doctoral programs, and facility-specific education. An oncology APRN course is currently being offered with free scholarships funded by the National Cancer Institute (NCI) for those selected; a graduate program version will be added this year. The program’s success is evident, as the ELNEC curriculum has been requested and delivered in 99 countries and translated into 9 languages since it was first developed— and demand continues to grow. Following ELNEC training, the behaviors, attitudes, and knowledge of nurses regarding palliative care improves significantly.1 Published ELNEC course outcome data are available on the AACN website.2

Pam Malloy, MN, RN, FPCN, FAAN, project director and co-investigator, who joined ELNEC in 2003, says that the organization’s training seeks to bridge a knowledge gap in nursing. “Nurses cannot practice what they do not know,” she says. The core curriculum operates according to a trainthe- trainer concept and begins with an overview of why improving palliative and end-of-life care through a holistic and interdisciplinary approach is a necessary part of quality nursing. Subsequent modules cover the assessment and management of pain, particularly at the end of life; management of symptoms, including those experienced during advanced disease; ethical and legal issues; cultural and spiritual assessment and care; effective communication with patients, family members, and the interdisciplinary team—a key focus of the program; loss and grief for patients, families, nurses, and other caregivers; and preparing for and administering care at the time of death.

Because palliative care centers on the family, the curriculum includes training on handling divisions between what family members may want for the patient and what patients want for themselves. “Conflict may exist in a variety of forms,” says Ferrell. “Perhaps the patient is tired of getting chemotherapy, but the daughter doesn’t want it to end, or a son who lives out of state tells a daughter who lives close to the patient, ‘You can’t give up on Mom.’” Ferrell says that these and similar issues underscore the importance of family meetings. The ELNEC training teaches nurses how to conduct meetings and work with interdisciplinary teams in addressing a myriad of social and psychosocial matters.

Malloy, who has been involved with the ELNEC program for over 15 years, explains that presenting palliative care options to patients and their families is a delicate matter. “Our job is not to take away anyone’s hope. Palliative care helps patients identify what matters most to them, so nurses can work to reduce barriers that get in the way of patients experiencing what brings them the most joy.”

According to Malloy, patients need to be in the driver’s seat, not the oncologist or oncology nurses. “Patients need to have honest conversations about what it is they are looking for. Some will want everything done until the final moment; others will say, ‘I don’t want that. I want to take a cruise with my family and have the best quality of life I can.’”

For oncology nurses, the importance of understanding palliative care and how patients benefit cannot be overstated. Malloy is committed to educating nurses about palliative care. “Practice won’t change until nurses are educated,” she says.

After completing the multiday core curriculum training during which participants receive over 1000 pages of resource materials, nurses take what they learn back to their facilities where they train staff through continuing education sessions, annual competency courses, and employee orientation.

Core courses are also offered online for individual learning, without the train-the-trainer focus. However, one of the biggest benefits of taking the national training is the opportunity for networking with other professionals across the country. Having a rich network provides many benefits for nurses, such as sharing their successes and soliciting assistance for problems and issues that arise.

Ten years ago, the ELNEC program received a grant from the National Cancer Institute to develop curricula for oncology nurses. Since then, many oncology nurses and the oncologists they work with have come to understand the importance of palliative care.

Current guidelines from the American Society of Clinical Oncology recommend that “inpatients and outpatients with advanced cancer should receive dedicated palliative care services early in the disease course, concurrent with active treatment.” 3 Results of a seminal study on palliative care show that in addition to experiencing less depression, worry, and nausea, patients who receive palliative care throughout their illness were also mobile for longer periods and fewer opted for aggressive chemotherapy as they became more ill. The number of patients with advanced directives increased, and their pain was better managed, which led to less fatigue and a higher quality of life.4 Perhaps most surprising, these patients tended to live almost 3 months longer than patients who received standard care.

Malloy states that one of the problems associated with cancer is the high level of moral distress that accompanies the disease and its treatment. Once nurses learn how to work with patients to develop plans of care based on available options, including the benefits and burdens of treatment, some of this moral distress can be alleviated. This is a key area in which skilled communication comes into play. “Having knowledge alone is not enough,” says Malloy. “Nurses also need to know how to communicate what they know to patients, oncologists, and other team members.”

Oncology providers often work with patients from the time of diagnosis through treatment, survivorship, recurrence, and the end of life. During ELNEC training, nurses role-play important conversations with patients, families, and oncologists.

“These are conversations nurses really need to have with the oncologist to say, ‘You know, we both love this patient. We cared for her for a long time, and I recognize this is hard for both of us, but I’m not sure Mrs. Smith is going to be around 6 months from now. What are your thoughts?’” Malloy says. Using this kind of nonthreatening approach is an effective way to open the door to palliative care involvement.

Diane Parker, MSN, RN, CHPN, CHPPN, CEO of Palladium Hospice and Palliative Care in South Carolina, began working in hospice in 2007 after 25 years in acute care. She had never heard of ELNEC, but was encouraged to attend a core train-the-trainer program. It sparked a passion and in 2010 she began a statewide comprehensive pediatric hospice and palliative care service. In 2011, she received the ELNEC Core Faculty of the Year award.

Parker says that ELNEC-trained nurses are an invaluable part of ensuring that pediatric patients receive the best care, as barriers to care, such as lack of available services and resources, still exist. A child’s needs are unique, and it is important that nurses learn how to advocate on their behalf.

For example, a child may be reluctant to express pain or fear because they see how their distress affects the family. Helping children express physical, psychosocial, emotional and spiritual needs is foundational for building trust and providing family-centered care. ELNEC helps nurses develop communication skills and understand how illness also impact siblings. Caring for a seriously ill child is always a family affair.

Just as pediatric patients have unique needs, so do United States veterans. Matthew Earnest, MS, RN, CHPN, performance measure coordinator at the Veterans Association (VA) Health System in Oklahoma City, served in the National Guard as a flight nurse. Before moving into his current position, he was hired to set up and run the VA’s 8-bed palliative care unit. He shared the importance of ELNEC training for nurses providing palliative care to veterans with

“Veterans are very stoic. Most won’t admit they are scared or in pain. Many also struggle with depression and guilt, especially at the end of life. Helping them identify and work through their feelings makes them more manageable.”

Earnest stressed that even a small task, such as waking a patient at night, impacts veterans differently. “You don’t want to stand by the bed at night and tap their shoulder. You have to be mindful of triggers.” Posttraumatic stress disorder is a major problem for many veterans. ELNEC training prepares nurses to address many of the complicating factors specific to caring for veterans.

Honoring veterans is another important component of quality palliative care. Sometimes this means altering procedure to meet the wishes of the patient. Earnest shared the story of a veteran who requested only 1 round of CPR, should his heart stop. When questioned, the patient replied, “I want to be known as the guy who went out fighting.”

ELNEC celebrates its 20th anniversary in 2019. Much has been accomplished, yet there is much to be done. The need for nurses skilled in end-oflife care will only increase. Patients are living longer with more comorbidities; as treatment options become more numerous and often more complicated, the healthcare community must be prepared to better meet their needs. Embracing the benefits of palliative care, not only at the end of life, but as part of the package of care, can help nurses ease the burdens experienced by patients with cancer. For more information about ELNEC, visit aacnnursing.org/ELNEC.

Ellen Rice Tichich, MFA, MSN, RN-BC is a clinical nurse educator and freelance health writer.

January/February 2019