The American Cancer Society estimates that 5%-10% of cancers are connected with mutations in the DNA that are inherited through generations.

 For millions of patients in the United States, genetic testing allows for a deeper understanding of one’s risks, prompting more comprehensive screening and services in an effort to prevent the onset of a disease or detect cancer at an earlier stage. Despite heightened awareness of the BRCA gene, breast cancer is far from the only cancer associated with inherited risks. Melanoma, pancreatic, prostate, colon, ovarian, stomach, and brain cancers may be associated with family cancer syndromes caused by inherited genetic mutations.

Most insurance companies that pay for genetic testing do so at the request of a primary care physician or genetic counselor who has agreed that there are enough immediate family relatives with cancer diagnoses to warrant a genetic test on the patient. Patients often have to recite a painful list of family members who have had cancer diagnoses, and this in itself is unsettling, given that they may have lost family members from the disease and may still be grieving. The emotional context of a family medical history is compounded by the implication that patients themselves may be diagnosed with cancer in the future.

For people with genetic mutations that lead to an increased risk of cancer, occupying the same clinical spaces designed for people with cancer diagnoses may be challenging. The protocol for many genetic mutations involves annual or biannual scans or follow up on concerns.

 As a result, patients can form lasting relationships with oncology nurses without ever having a diagnosis of cancer. The discovery of a genetic mutation allows people to take power over an uncertain future, but places them in the same medical setting they are hoping to avoid. For those living in more rural areas, access to genetic counseling may be limited. Patients will look to oncology nurses for assurance that their screenings or preventive measures will be effective, and may feel discomfort at being treated as though they are already a person with cancer.

Because most patients with genetic mutations will have family members who have been diagnosed with cancer, it can be a fine line between patient and caregiver. When working with clients who compare their diagnoses and experience with cancer to those of similarly diagnosed family members, it is important to remember the individuality of patient experience. Working with caregivers can present unique topics, as their concerns are both for the patient and for their own futures. It is important as oncology nurses to remember that patients identified with family cancer syndromes usually have a lengthy personal narrative that includes multiple losses of family members. This creates the need for a delicate balance in which oncology nurses have to be aware of their patients’ need for support while not assuming that the patient will become ill themselves. 

People with genetic mutations are often confronted with an abundance of screening protocols that can be overwhelming. Oncology nurses have the rare chance to form long-term relationships with patients and help contextualize the data behind what “increased risk” means. Various cancer syndromes can have different timelines; one may involve an  increase in cancer diagnoses for those under the age of 30 while another might involve a lifetime of gradually increasing risk. Oncology nurses can help put these things into context. For example, oncology nurses can help patients understand that a high risk of cancer by the age of 70 only remains true if nothing is done to lessen risks associated with cancer

 and that increased screening, changes in diet, reduction in alcohol and avoidance of tobacco can prevent or reduce chances of cancer.

Oncology nurses are at the front lines of meeting a patient where they are emotionally. If a patient comes to an oncology center for screenings, oncology nurses can treat them with care and empathy while being mindful that the patient might not need the same degree of support as someone with a cancer diagnosis. In the same vein, a patient with a family cancer syndrome may experience increased anxiety due to previous scans and tests and require more information and reassurance.

It is essential to remember that people with family cancer syndromes may never receive a cancer diagnosis. This may be due to preventive surgeries to remove organs and body tissue or prophylactic medication.

 For those patients who are unable to take preventive surgeries and rely on increased screening measures, there may eventually be a cancer diagnosis. The emotional comparison to other family members challenges the notion that everyone’s experience with cancer is unique, and oncology nurses can help contextualize and support a patient who transitions from screenings to cancer care. Oncology nurses are often in a prime position to validate the patient experience and provide essential support in long-term relationships with patients and caregivers.

The American Cancer Society. Family Cancer Syndromes. 

https://amp.cancer.org/cancer/cancer-causes/genetics/family-cancer-syndromes.html

 January 4, 2018. Accessed December 10, 2019

Schmeler KN, Lynch HT, Chen L, et. al. Prophylactic Surgery to Reduce the Risk of Gynecologic Cancers in the Lynch Syndrome. 

. Jan. 9, 2006. DOI: 10.1056/NEJMoa052627

 Garber JE, Offit K. Hereditary Cancer Predisposition Syndromes. 

Articles

People with genetic mutations are often confronted with an abundance of screening protocols that can be overwhelming.

Genetic Testing and Inherited Increased Risk of Cancer

Diversity, inclusion, and equity are values central to advancing the mission of the American Association of Colleges of Nursing (AACN); an organization recognized as the collective voice of academic nursing.

We hear these terms all of the time; however, what do they really mean? To eliminate any bias per se, let us review the literature to expound on the value of these concepts as it pertains to professional organizations, especially where people hold leadership positions.

While this topic can be viewed as controversial by some; it is important to address to ensure that everyone’s opinion is recognized. Inclusion provides support to obtaining a better understanding of one’s personal and social values; this can reduce bias, discrimination, and prejudice.

However, inclusivity does not mean conforming to the social norm of the majority, it means that someone might be a little different, but you accept that and meet them where they are.

Diversity embraces a wide range of variation; factors such as, age, gender identity, race, ethnicity, culture, religion, sexual orientation, disability, language, or socioeconomic status are just a few aspects of the term diversity.

We have all heard the term, “having skin in the game,” well this is equity, the ability to recognize the differences in the resources or knowledge needed to allow individuals to lend their full participation.

In order for the nursing profession to continue to evolve, change is needed; we can all make a start by embedding these concepts into our minds and giving deliberate attention to everything that we do. Leadership sustainability includes every component of diversity, it is imperative that leaders who are serving today be appropriately prepared, and that they mirror the behaviors that they want their followers to demonstrate.

These are all interpersonal concepts that require cultural competence and respect being paramount during assimilation to continue to advance the nursing profession. 

New perspectives, new faces of leadership, new leadership styles, all can create new opportunities with more voices being heard.

Having all stakeholders involved can reduce assumptions, challenge opinions, widen perspectives, and encourage socialization across all groups. This can result in innovation and overall improvement in the foundation of the nursing profession, which will allow nurses to treat a wider range of patients more effectively.

AACN position statement on diversity, inclusion, & equity in academic nursing (2017). Journal of Professional Nursing, 33;173—174.

Woody, R. (2017). Expanding diversity: Noncategorical inclusion and equity. 

New perspectives, new faces of leadership, new leadership styles, all can create new opportunities with more voices being heard.
 

Diversity and Inclusion Should be Valued in Leadership Roles

October is recognized as Breast Cancer Awareness month, and it is difficult not to notice the theme at every turn, from worldwide landmarks with pink lights—Buckingham Palace, the White House, and Tokyo Tower, to name a few&mdash;to professional athletes altering their uniforms with pink socks, sweatbands, and caps. During this month, you can also find seminars, conferences, and screenings centered around breast cancer. Advertisements on television and social media, too, are loaded with the color pink and the symbolic pink ribbon.

Despite all these efforts to bring awareness to breast cancer, as an African American woman, it is heartbreaking to read the statistics about my ethnic group and the treatment disparity that still exists in 2019. 

 reports that among African American women with breast cancer younger than 50 years old, they have a mortality rate double that of white women with breast cancer.

Not only are more aggressive forms of breast cancer diagnosed in African American women than white women

—such as triple-negative breast cancer (TNBC), which has limited treatments available and can’t be treated with hormonal therapies&mdash;but the disease is being diagnosed at more advanced stages. Contributing factors to these inequalities include social and economic disparities, cultural differences, biological differences, and lack of access to high-quality healthcare. The socioeconomic disparities stem from fewer opportunities and lack of access to resources, such as employment, income, education, housing, healthy foods, and standard of living compared to white Americans. The higher cancer burden may also reflect different rates of behavioral risk factors for cancer such as smoking.

Are we looking close enough at the biological differences? Why are black women more opt to develop TNBC that is most likely not due to a 

 Does socioeconomic status determine the type of breast cancer diagnosed in these women? Could there be a gene mutation expressed in black women that has not yet been identified? In order to dive further into the germline DNA, clinical trials need to include more African American women.

With what we already know, how can we begin to close this disparity gap? I believe knowledge is power and without knowledge, life is lost. Education is key to closing this gap. The American Cancer Society has done a lot of work to bring awareness to underserved communities through prevention and early detection programs and services, by providing transportation to treatment and lodging during treatment, and by assisting with navigation through the healthcare system.

 Community leaders, cancer advocates, health care workers, organizations, associations, and anyone who has an interest in the community must join forces to help bring their own awareness to the unique challenges that African American women with breast cancer face.

The technology is available, and new breakthroughs and treatments are continuing to be revealed, but African American women are not receiving many benefits from these advancements. Much work is still needed to improve the mortality rate and close the disparity gap of African American women with breast cancer.

DeSantis CE, Ma J, GHaudet MM, et al. Breast cancer statistics, 2019 [published online October 2, 2019]. 

Forster V. Breast cancer death rate continues to drop, but black women have far higher mortality rates. 

forbes.com/sites/victoriaforster/2019/10/02/breast-cancer-death-rate-continues-to-drop-but-black-women-have-far-worse-chance-of-survival/#681548922054

Cancer Facts & Figures for African Americans 2019-2021

. Atlanta, GA: American Cancer Society; 2019. 

cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf

The biology of cancer health disparities. National Cancer Institute website. 

cancer.gov/research/progress/discovery/biology-cancer-health-disparities

Despite advanced technology and new treatment breakthroughs in cancer care, treatment disparity remains among African American women with breast cancer.
 

African American Women Aren't Receiving the Benefits of Breast Cancer Awareness

In 2002, I returned to work at my prior hospital of employment and found many examples of forward-thinking in place.  One seemed like an oxymoron. A palliative care nurse practitioner was now employed within the Medical Intensive Care Unit (ICU). I wasn’t sure what to make of this addition at the time, but years later, I’ve realized the very appropriate allocation of this advanced practice nurse within this setting.

The overall death rate in the ICU is high: 20%-35% of patients admitted to intensive care die.

 In addition, admissions to the ICU in the last month of life have increased to nearly 30%.

 Within cancer care, contemporary data confirms the importance of addressing the needs of patients with cancer within the critical care setting. Consider the following:

In the past decade, up to a third of patients admitted to ICU have a cancer diagnosis.

Overall, 1 in 10 patients experience a life-threatening condition that requires the supportive technologies and monitoring rendered within the ICU setting.

The use of aggressive cancer therapies heightens the prevalence of emergent scenarios; this is especially the case in the treatment of hematologic malignancies and with the use of hematopoietic stem cell transplantation.

Associated with the increased prevalence of oncology patients within critical care settings are other corollaries. 

Within the context of patients being unable to speak on their own behalf, surrogate or proxy decision-making has a plethora of problems and controversies.

 The prevalence of considerable symptom distress is another issue. In addition to cancer treatment-related sequelae, palliative care-related symptoms (i.e., thirst, anxiety, sleep disturbance, dyspnea) also require management.

 Lastly, poor communication amongst numerous physician specialists and with family members is pervasive.

There are several interventions to be considered to address these issues. They require implementation within the critical care and oncology unit settings. Consider the following:

Establish a routine schedule for rounding with the palliative care team in both the oncology unit and intensive care settings. This includes developing a proactive approach to identifying patients who could benefit from palliative care interventions with the delineation of triggers for palliative care consults.

In the ICU setting, have a plan for routine family meetings based on the projected or estimated length of stay.

Create comfort care protocols for the management of common distress sequelae.

Consider the development of family education approaches to enhance their awareness of common sequelae they are likely to encounter in critical care.

Mandate communication training opportunities that address common scenarios likely to be encountered within critical care.

I had the opportunity to work with a research initiative within the 5 University of California hospitals to train critical care nurses in communication skills.

 The program’s goal was to provide needed instruction in the clinical setting about how to speak with the families of ill patients and the training consisted mostly of role-playing communication strategies with families, physicians, and family meetings.

Oncology nurses are one of many nurse specialties that care for patients with cancer.  Emergency Department, PACU, surgical, rehabilitation, home care, dialysis, medical, and critical care nurses care for our patients at various phases of their cancer experience. The inevitability of oncology patients being cared for, and possibly dying, in the critical care setting is a real one in today’s acute care environment. Because of the prominence of cancer today, all nurses need to ensure they have the expertise and confidence to care for oncology patients at varied points along the cancer continuum.

Angus DC & Truog RD (2016).  Toward better ICU use at the end of life. 

Teno JM, Gozalo PL, Bynum JP et.al. (2013). Change in end of life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. 

Boyle DA, Barbour S, Anderson W et.al. (2017). Palliative care communication in the ICU: Implications for an oncology-critical care nursing partnership. 

Mercadente S, Gregoretti C, Cortegiani A (2018). Palliative care in intensive care units: Why, where, what, who, when, how. 

Puntillo KA, Arai S, Cohen NH et.al. (2010). Symptoms experienced by intensive care unit patients at high risk of dying. 

Oh YS (2017). Communication with health professionals and psychological distress in family caregivers to cancer patients: A model based on stress-coping theory. 

Milic MM, Puntillo K, Turner K et.al. (2015). Communicating with patients’ families and physicians about prognosis and goals of care. 

Fumis RR, Martins P, Schettino G (2015). The impact of poor prognostic patients admitted to the intensive care unit on family members emotional disorders. 

Wright AA, Keating NL, Ayanian JZ et.al. (2016). Family perspectives on aggressive cancer care near the end of life. 

Anderson WG, Puntillo K, Boyle D, Barbour S, Turner K, Cimino J, Moore E, … Pantilat S.  ICU bedside nurses’ involvement in palliative care communication: A multicenter survey. 

Boyle D & Anderson WG. Enhancing communication skills of critical care nurses: Focus on prognosis and goals of care decision-making. 

The stigma around palliative care is that it is only associated with end of life, and in some minds, giving up. But that isn't the case, as palliative care is a vital part of any critical care.  

Incorporating Palliative Practices Into Critical Care

My observations over the years have led me to believe that there is a nursing hierarchy among the nursing specialties, and critical care nursing is considered by many the pre-eminent nursing specialty.  Case in point, within all general areas of nursing, the Medical ICU, Trauma ICU, Peds ICU, Neonatal ICU, are perceived to require the highest skill set of nurses. General nursing experience is often mandated before consideration of position placement within these units, hence, critical care positions itself as being a ‘cut above’ generalist medical, surgical, and pediatric nursing.

The ICU’s elevated status is directly associated with technology’s overwhelming presence in these areas. The use and manipulation of machinery are perceived to be associated with the highest level of nursing skills, and closely related to technology’s presence is heightened acuity correlated with the need for ideal ratios of nurse to patient staffing.

In the hospital setting, I practiced as an oncology clinical nurse specialist in collaboration with a critical care nurse educator on multiple projects.  This colleague, a highly skilled and long-tenured critical care nurse, decided to return to school to pursue becoming a family nurse practitioner.  One of her lengthy clinical practicums was on a general in-patient medical-surgical unit for 3 weeks.  My colleague used multiple vacation days to complete this clinical requirement and nearly a month had passed since I had seen her.  Upon one of her first days back to her educator role she asked if we could have lunch, and the reflections she shared were quite telling.  

My colleague was astounded as to the complex nature of the patients she encountered in this unit. The majority of patients were elderly, diagnosed with multiple co-morbidities, and prescribed a myriad of medications. Many of these patients could not get out of bed on their own and needed assistance with the basic elements of daily performance. Their clinical symptoms reflected a wide array of potential etiologies, many of which were not detectable from a definitive laboratory marker or radiologic finding.  She went on to share her reflection of the comparison between critical care nursing and it’s medical-surgical corollary.

In critical care, she described, abnormalities are technologically calculated on a number of platforms. Hemodynamic, urinary, hepatic, and neurologic parameters are spelled out in objective measures. The data portending demise and emergent scenarios are printed out in front of us. In medical-surgical nursing, there are no such measures to aide decision-making. Medical-surgical nurses must rely heavily on their critical thinking skills, collating and comparing numerous data sets, and past knowledge to determine and anticipate clinical scenarios.  Medical-surgical nursing she summarized, is so much harder than critical care nursing. This is exacerbated by these nurses having at least twice if not more patients they must care for in a shift than ICU nurses have.

Secondly, my personal and professional impressions also credence to my colleague’s reflections. The overwhelming influence of technology in critical care has diminished the importance of humanistic care. With the heavy reliance on machinery, comes an over-emphasis on numbers. This minimizes the importance of addressing the interpersonal distress observed in the hovering family members and the anxious patient in respiratory distress.  My clinical experiences within critical care have left me with the impression that emotional support takes a back seat to lines, tubes, drains, and pumps. 

I believe that in contemporary health care, oncology nursing has evolved into a ‘pseudo’ critical care specialty. The technology is not as pervasive as in critical care, but it is dominant in everyday practice. I worry that this could falsely place competency in managing machinery as being more important than mastering how to talk to patients and families in crisis. I have always embraced the expectation that we must be equally proficient in our interpersonal skills as we are in our technical ones. Striving for this dual excellence positions us uniquely as a nursing specialty.  

When you plan or consider attending, the next oncology nursing continuing education program, look closely at the nature of what is being presented. Is comparable emphasis given to recognizing patient suicide risk and minimizing caregiving burden to knowing early symptoms of oncologic emergencies, managing central line complications, and using personal protective devices?  Ongoing deliberation of what we are teaching will ensure that the dual domains of oncology nursing excellence are alive and well in practice.

Among the various specialties of nursing, a sort of hierarchy has formed that may be putting competency with machines over nurse and patient interactions.

Is There a Nursing Specialty Hierarchy?

I vividly remember calling the wife of a patient after the death of her husband, as I wanted to see how she was doing. I purposely waited to call a month after the patient’s death as I knew from my research with families whose loved one died in the hospital setting, that this is a particularly rough time. The cards and calls no longer come. The visitors have left, and the primary caregiver is left in an empty house to face the reality that their loved one is gone forever. I also knew caregivers find these calls particularly supportive because they feel the nurses who cared for their loved one truly know what they went through, especially when the cancer trajectory was a difficult one. This wife told me that she returned to work earlier than expected after taking a leave of absence during her husband’s treatment. She said she felt isolated and lonely in her house so she thought her return to work and the company of her co-workers would be helpful to her, but she found the opposite to be her reality.

“It was awful,” she said. “I felt like a leper. People I had worked with for years avoided me like the plague. No one even mentioned the fact that Jim had died; it was like my personal tragedy never happened. I felt even more alone than when I was at home and I was angry at my co-workers who treated me this way. I wasn’t asked to go to lunch or socialize with them like we used to do. They avoided me, I think, to eliminate the possibility that I would bring up Jim’s death and they didn’t want to talk about it. Jim’s death and my grief were topics no one wanted to talk about. I was around people I had known for years, had a relationship with yet I experienced such alienation, it was painful. I eventually quit my job and decided to try something new, go somewhere where people weren’t aware of my situation and my sadness.”

Never could I have imagined at this time, that I would personally experience this same phenomenon, not once but twice.

Following my own husband’s death from metastatic bladder cancer and my daughter’s untimely death following a tragic car accident, I returned to my work in the hospital setting. I was met with similar insensitivity from some co-workers. However, in my case, the avoidance and isolation did not come from laypeople with little exposure to and much discomfort with death. In my instance, it was my colleagues, nurses, and doctors, many of whom witness tragedy on a daily basis, who were the ones finding my presence uncomfortable. These are the people who were supposed to be knowledgeable about offering comfort to families who were suffering from the loss of loved ones. 

After returning to work following my husband’s death, I was on the elevator and it stopped on the floor housing the OR. When the door opened, there stood my husband’s urologist waiting to get on. I actually saw the discomfort on his face when he saw me. He made a brief attempt at a greeting, but he then abruptly turned saying, “Oh there’s something I forgot to dictate about my last case” and turned away from the elevator. Very similar to the patient’s wife whom I called, when I returned to work after my daughter’s death, the avoidance and isolation from the group of nurses I worked closely with was abhorrent. Not one of them ever mentioned the fact that she died, never mentioned her name or asked about my sorrow. The first time I returned to work after an extended bereavement leave, the only people who mentioned what had happened was the director of volunteer services and an administrative intern. 

I am sure there are many other comparable stories like mine.  I feel strongly that every work setting should have a support program for employees who return to work after the death of a close relative. Focus groups with employees who have personal experience with this issue would generate many ideas about what would help.

For example, it would have been very comforting for someone from work to have met me in the lobby of the hospital to welcome me back and accompany me back to my unit or if there was a card waiting for me signed by my co-workers telling me they missed me and thought a lot about me around the loss of my child. They could have had an EAP counselor come to me on one of the first days back (rather than expect me to go to them) to offer support and to determine if I might want more counseling in the future. A session with my co-workers might also have been beneficial for the counselor to discuss how to talk to someone with intense grief and how to interact with them upon my return. 

Knowing what to say and emphasizing the importance of positive communication skills might have made them less anxious about knowing how to interact with me. It could have let them know I didn’t want to hear their stories of their losses, but rather that I would have found a listening ear more beneficial. I didn’t want to keep my sadness hidden and this would have allowed me to give it a voice. Also, for me personally, it would be great to just be hugged, no words necessary.

The grieving process doesn't stop when you think you're ready to go back to work, and it can be made worse when your coworkers are unsure how to console you. Which is why workplace assistance is essential for grieving employees.   

Why Workplace Assistance is Needed For Grieving Employees

This year’s depiction of “the best” hospitals generated by the 

garnered significant attention after its release. Institutions that made the coveted list were quick to buy up media advertisement space to widely market their rankings. However, on social media, I saw numerous physician commentaries stating that the criteria used for the rankings were flawed.  This made me curious about what variables were used to identify “the best” of this year’s hospital rankings when nursing is taken into consideration.

The hospitals were categorized within the 

 of outcomes and patient experience, and process and outcomes. Some examples included discharge to home, availability of technology, presence of intensivists, patient volume, patient experience, presence of select patient specialty offerings (i.e., fertility clinic, hospice, pain management, palliative care, translators, wound management) and the expert opinion by physicians. There were only 2 criteria that addressed the quality of nursing: staffing and Magnet status. 

After looking in detail at the criteria, this ranking methodology is indeed flawed. Why? Because it does not reflect the robust nature of nursing excellence that is required to be “the best” hospital in any category, and most certainly within the nurse-intensive nature of cancer care. The isolated use of nursing positions (i.e., staffing) does not reflect the quality of nursing care required to render optimum patient care. You may think, well Magnet status is taken into consideration, but that is a sign of practice excellence. Only 1 point is given to hospitals holding this prominent recognition, while all other criteria are judged on a wide spectrum with their own factors taken into consideration. Furthermore, even the top hospital is only given an “above average” for its nursing staffing while scoring “very high” or “excellent” in every other category.

Irrespective of the number of intensivists and the latest technologies, without nurses, no hospital can function. All cancer therapies and supportive care interventions require the expertise of oncology nurses to assess, treat, monitor, support, teach, and counsel patients and their caregivers in ways that physicians or other members of a patient’s care team cannot. It is timely that nurses speak up about their absence within the criteria used to measure “the best” when rankings like this are not taking crucial aspects of a patient’s care into perspective.  

A recent ranking of "the best" hospitals in the country did not take a key aspect of cancer care into proper consideration, the oncology nurse.

Taking Oncology Nurses' Roles Into Consideration When Determining Hospital Rankings

Katy was sixty-one, she’d worked as a manager on a hospital oncology unit for fifteen years, having been a staff nurse in the same oncology unit for ten years before that. She’d endured management shakeups, mergers, converting to electronic health records, and the changes from the Affordable Care Act. She weathered the daily ups and downs of staffing ratios, data and patient satisfaction scores, and turnover of what had once been a staff of forty nurses at any one time on her unit.

She looked forward to retirement at 65, but she wasn’t financially prepared for it yet. She knew that at 65 she’d still have to work at least part-time for a few years beyond that just to stay financially solvent.

After a short vacation, Katy came back to work one Monday morning and was greeted by her boss, “Can you meet me at my office at three?”

At three o’clock she walked into her boss’s office, as she had done a thousand times. This time, a different effect, almost a blank gaze met her instead of the usual greeting as her boss began talking.

“I’m not sure you’re doing everything you can to get those scores up. It seems that you’ve been different lately, and senior management is wondering if you even know how to do your job.”

Katy felt the taste of adrenaline in her mouth and her entire face began to tingle. She wondered for a second if she was having a dream, but the conversation was happening. Feeling the blood rise into her face, she wasn’t sure that she actually heard all of the words coming out of her boss’s mouth.

Her boss’s voice brought her back. “I’d like you to sign here that we had this conversation, and I want you to meet with HR on Wednesday to discuss your performance improvement plan.”

Scanning the paper with her eyes, Katy tried to hold back a deep sigh as she signed. Standing up, she felt wobbly on her feet. Somehow, she made it back to her office without having to talk to anyone, turned off the lights, locked the door, and crumbled into a crying heap in the corner chair.

After a few days of processing what was happening, Katy was shopping for groceries when she ran into a former colleague who had retired from the same hospital. “How are you holding up?” her colleague asked. As they started talking, Katy could not hold back the tears. Trying to pull herself together, the colleague said, “I am so sorry this is happening to you. That’s what they did to me. I don’t remember my self-esteem ever being so low after that experience. I ended up taking early retirement and I got out of there before they fired me.”

Katy’s eyes and ears were wide open. Her friend continued, “They’ll pull this performance improvement thing and then they’ll ride you on every little thing until you get so flustered and overwhelmed that you screw something up or just quit.” She explained they are doing this in all the hospitals now, trying to cut costs. If they can have one less manager and make one person do three people’s jobs, they’ll do it.

“They don’t care how long you’ve worked. They won’t make it easy for you.  My advice would be to talk to your financial planner and get out of there, the sooner the better, so the stress won’t eat you alive.”

A growing number of nurses are older and vulnerable to the upheaval that a pre-retirement job loss can bring. It used to be that if you saved and took advantage of any matching retirement plans your employer offered, managed your spending and saved well, you could expect to retire comfortably. You could expect to work until you chose to retire, whether that was at 65 or some other age. Many people still assume they will work their job until retirement age and retire with their financial plan intact.

We can no longer count on that. Along with the rising age of full retirement in the U.S., there is a growing gap between the time workers stop earning their highest level of income and the time they retire with full Social Security benefits and the safety net of Medicare.

Age discrimination is real, and it can be hard to recover if your new job does not compensate you as well as the old one. Women are at risk of even more age discrimination than men¹, and with women making up the majority of oncology nursing this is a major issue for all nurses.

Having a backup plan and a good financial planner is essential. What would you do if you lost your job tomorrow? How would you re-finance your entire life? Do you know a competent professional who could help you get back on your feet? 

There’s also the emotional component. How would you handle a blow to your identity as an oncology nurse?

If you love oncology nursing, are there other places where you could continue doing this? Nonprofit organizations in the community? Hospice? Home care? Starting some type of service for people with cancer and their caregivers? Or would you seek something else?

NewsHour PBS. Women over 50? Help not wanted. PBS. 

https://www.pbs.org/newshour/show/women-over-50-help-not-wanted

. Published January 15, 2016. Accessed September 13, 2019.

Retirement planning often never goes according to plan, but many oncology nurses are facing a retirement dilemma forced upon them by decisions from the higher levels of their respective health systems.  

Are You Ready for Retirement Before You're Ready?

One of the topics in oncology nursing that I am passionate about is the unparalleled stress we encounter in our work. It is multifocal, often unrelenting, and overwhelmingly unappreciated by others. It emanates from difficulties in teamwork; staffing; competing demands on our time between technology and the human side of caring; under-recognition of our skills by physicians and the organizational hierarchy; and our constant exposure to the grief of others. Unlike other colleagues, nurses can’t leave the scene when the stress becomes so overwhelming you want to implode. We are immersed in a work setting often characterized by negativity. Some may even call this environment toxic.

I have recently noted an increased press about health professionals’ burnout. Physicians are generally highlighted as being prone to this phenomenon. Rarely are nurses acknowledged for their risk. Being a frequent speaker on the emotional sequelae of nursing, one of the issues I often stress is the distinction between burnout and compassion fatigue. I often find myself critiquing the correctness of these concepts’ definitions and association, however, I recently had a realization: Does it matter what we call it? Ultimately, the most important thing is that we acknowledge this adversity and get help to minimize and manage it.   

Nurses’ emotional distress has numerous roots. They include moral anguish, grief, frustration, impatience, guilt, witnessing constant trauma, and feelings of powerlessness. These can culminate in physical, social, and work-related sequelae such as fatigue, insomnia, loneliness, purposeful isolation, work performance compromise, and turnover. It is time that the reality of our stressful practice is not just recognized by oncology nurses, by the larger healthcare world as well.

Decades ago, an insightful chief nursing officer at my place of employment, decided to develop a program to expose non-nurses to the realities of our work. It was called “Walk in a Nurse’s Shoes.” Representatives from the mayor’s office, large insurers in our area, philanthropists, chief executive officers of major employers, university presidents, religious leaders, police and fire officials, and others, were invited to spend a day at our hospital to learn what nurses do. Each visitor spent 4 hours with 2 different nurses. I spent my day accompanied by the mayor’s assistant and a managed care insurance official. At the end of the day, there was a large group de-briefing.

When sharing their experiences, a number of these community leaders were moved to tears. Many voiced a sense of awe about what nurses were responsible for, and what they were able to accomplish. The majority relayed personal dismay at their lack of understanding about nursing work. They also shared that their time spent in this program completely changed their perceptions of nurses.

This is 1 example of showing, rather than telling, what the emotional labor of nursing practice looks like. It is exemplars like this that can drive the needed awareness of decision-makers about the realities of nurses’ work. We need people resources and financial backing to provide counselors, mentors, and teachers who can provide us with the needed skills to work in this stress-laden context. 

I have decided not to get fixated on the name given to the stress that is part of our daily practice.  Rather, I am going to lobby for interventions that will enlighten the power-brokers’ understanding of the resources we need to cope with this often-unrelenting stress. I encourage you to identify who a prominent decision-maker is in your setting who needs to witness firsthand the emotional sequelae you face when you nurse. Take their phone away and invite them to immerse themselves in your world to understand your situation better.

To fight the issues of burnout within oncology nursing, nurses must allow others to step into their world and understand the issues they face. 

What's In a Name?

A cancer diagnosis usually means a whirlwind of changes and challenges that were unexpected. This can include long-term or short-term treatment for adverse events (AEs). Some AEs include hair loss, fatigue, weight changes, surgery scars, loss of body parts, rashes, or the need for an ostomy.

 These physical changes can affect the way patients feel about their appearance and body image.

The realization for patients that their look is going to be altered for a short period of time or for the remainder of their lives can cause a decrease in self-esteem. One of the things we hear, specifically among women, is how unprepared they are to lose their hair due to their treatment regimen. For AEs like hair loss, there are options such as wigs and other head coverings to mediate the change. But there are also other changes caused by cancer that are not as easy to hide, such as an ostomy or scars from surgery.

Self-esteem is defined as “the confidence in one’s worth or abilities”

 and is one of the many aspects of a patient’s life that is affected by cancer treatment. Self-esteem can be high or low and in patients with cancer, and it is important to maintain self-esteem that is closer to the high end rather than the low. Patients with lower self-esteem have been linked to having more depressive symptoms and decreased social support.

 When patients look in the mirror, they want to be happy and proud of what is staring back at them, and that is not always what happens. As a result, they need support during the times that they don’t feel like themselves, especially when their bodies start changing right before their eyes.

Nurses are in an important position to have conversations with patients about self-esteem and body image. It would be ideal to discuss body image and self-esteem with every patient during every encounter.

 Here are tips to make this more feasible when nurses see patients:

Encourage the patient to give themselves time to adjust to the change. 

Certain changes, such as scars, are unavoidable. Over time, for many patients, they adapt to the new reality and a new normal. Encouraging the patient to take time to adjust allows the patient to integrate what happened. Being encouraged to be kind to themselves in the process allows them to mourn the change so they can better integrate it into who they are now.

Talking with others living with cancer about how the changes are affecting them, patients can find support hearing others have had similar experiences. Sharing feelings with other patients can provide an opportunity for hope and understanding. Talking with a professional on a one on one basis can provide patients a safe space to be open about their feelings and learn new ways to cope. This can help them better understand their own feelings.

When appropriate, alternatives to some physical changes can be provided, like in the case of hair loss. In the case of losing one or both breasts, there are various prosthesis options. Inform patients about reconstructive surgeries and other cosmetic solutions.

When possible encourage patients to remain active since physical activity allows patients to feel more energetic and once again engaged.

Climate also plays a part in how patients feel about body image/self-esteem. In warmer months, there is a possibility that nurses will encounter more patients with anxiety about their appearance because of increased outdoor activities when more skin is exposed. At the same time, the heat poses another layer of concern. For patients with skin cancers or who are on certain medications, they have to be mindful of sun exposure. In colder months, it is a lot easier to cover up changes to the body with a layering of clothes like turtlenecks, hats, and additional accessories to hide some side effects the treatment has had on their bodies.

 When nurses speak to patients and their loved ones, remember to provide as much support as possible. Let the patients know that they are not alone and that there are people ready and willing to help. Nurses can also let patients know that organizations like Cancer

 provide many free services like counseling and support groups. Patients can call 1-800-813-HOPE (4673) to speak with one of Cancer

Self-Image and Cancer. (2019, January 08). Retrieved April 23, 2019, from 

https://www.cancer.net/coping-with-cancer/managing-emotions/self-image-and-cancer

Self-esteem. 2019. In Merriam-Webster.com Retrieved April 23, 2019, from 

https://www.merriam-webster.com/dictionary/self-esteem

Schapmire T, Faul A. Cancer and Older Adults (65 Plus). 

Handbook of Oncology Social Work Psychosocial Care for People with Cancer

 (p. 530).  2015. New York: Oxford Universtiy Press.

Messner, C., Kornhauser, C., & Canosa, R. The Biopsychosocial Implications of the Site of the Cancer. 

Handbook of Oncology Social Work Physchosocial Care for People with Cancer

 (p. 77). 2015. New York: Oxford University Press.

Treatment adverse events (AEs) can affect patients’ self-esteem, but oncology nurses can help.

Contributors