When Betty Ferrell, PhD, FAAN, FPCN, began her nursing career in 1977, the concept of burnout was relatively new. As oncology units, like the one Ferrell worked on, were just getting started, the challenging nature of providing care solely for patients with cancer soon became apparent. Ferrell started hearing more about burnout, which at the time was being attributed to the work itself—an idea she had trouble reconciling with what she was experiencing. As a new nurse, Ferrell found herself questioning whether caring for this population was truly the root cause of burnout, as many seemed to believe. She realized that for her and many of her colleagues, caring for sick, complicated patients was not the problem. On the contrary, it was the patients who kept her coming back day after day. It was the patients who kept her going. She could learn how to care for and comfort the seriously ill and dying, but dealing with an administration that made her job more difficult was another matter.

®, Ferrell, a professor and director of nursing research at the City of Hope National Medical Center, shared her insights about burnout and resiliency, and the important role of compassion, particularly during this trying time with the coronavirus disease 2019 (COVID-19) pandemic. Recalling her early years of nursing, Ferrell reflected, “What made me the craziest was that I could not give the care I wanted to give. I remember thinking that when it came to the concept of burnout, it was not just about the patient. The organization has a big role to play as well.”

The issue of burnout is now a well-known and well-researched phenomenon.

 Oncology nurses are at high risk for suffering from its effects, but they are also learning that even amid a pandemic, there is reason to hope, lessons to learn, and strength to be found.

Unlike burnout, which is defined as workload stress, compassion fatigue is secondary stress from exposure to suffering, and it is unique to caring professions.

 If not addressed, compassion fatigue can lead to burnout.

Courtney Sullivan, MSN, RN, CPNPAC, CPHON, project coordinator of global nursing, and Belinda Mandrell, PhD, RN, PNP, director of nursing research, both with St Jude Children’s Research Hospital, recently completed work on an evidence-based compassion fatigue quality-improvement program on a subspecialty pediatric oncology unit at St Jude.

® about their work and shared what nurses and organizations can do to address the issue of compassion fatigue.

Sullivan and Mandrell first identified the existence of compassion fatigue as a true problem through validated staff surveys. They also measured resiliency. What they learned was that while nurses experienced much reward from their work, they also experienced much stress. The emotional toll of caring for patients with cancer may be offset by the rewards of the work, but the risk for compassion fatigue remains high.

Having a mechanism for hearing the voice and concerns of staff and a plan for improving resiliency are crucial for preventing/reducing compassion fatigue and, ultimately, burnout. Sullivan noted that shared governance, unit-based councils, and a healthy work environment committee are important structures for nurses to share their concerns with nurse leadership, who can then act upon them and help support nurses with the self-care needs they have.

Their organization created spaces on each newly constructed unit only for nurses, including a lounge with a kitchen and a respite room. Leadership makes a point to come to the unit to let staff know they care.

They also have Resilience in Stressful Events (RISE) responders who are trained, interpro-fessional volunteers who are available 24/7 to provide staff with needed support during stressful events or for mental, emotional, and moral distress.

A new support tool called Code Lavender started at their organization in July. When a Code Lavender is called, a RISE responder comes to the unit with a self-care cart of interventions, such as journaling materials and aromatherapy. Mandrell noted that, “We mustn’t forget that compassion fatigue trickles throughout the orga-nization. [Environmental services], nutrition, registration personnel—everyone is affected by patients and their stories.”

For any intervention program to be successful, someone must own it and make it available. “Unless someone has ownership of the program/project,” said Mandrell, “it will just sit there.”

Sullivan stresses the importance of adminis-trative support. “Through healthy work environment committees and unit councils, that’s where you have your stethoscope to the voice of the unit, the heartbeat of those nurses, your finger on the pulse of what’s going on.”

When it comes to burnout, nurses are making a difference. They have learned more about what burnout is and what can be done to offset and even prevent it. By looking at work environ-ments and studying leadership strengths and weaknesses, nurse scientists like Ferrell have a better understanding of why nurses stay and why they leave.

“When you can’t provide the care your patients deserve, that’s a big part of burnout. Saying burnout is from working too many hours is a shallow interpretation. A deeper reflection is to think about what is really creating the burnout and consider the concept of moral injury and distress,” Ferrell said. “We’ve learned a lot. Great people have done important work. Ethics committees, nurse ethicists, and palliative care have become part of our practice. Reducing the moral distress that stems from violating personal values and beliefs regarding what constitutes good patient care can greatly impact the level of burnout experienced by nurses working in oncology.”

With COVID-19, the intensity of being a nurse is escalated on many levels.

 Nurses worry they will get sick and expose their families to risk. Working during the pandemic may mean longer hours, reductions in staff, and added concern for patient safety. Nurses may find themselves caring for patients, but without the proper protective equipment. Going beyond equipment shortages, nurses have also had to abandon the basic princi-ples of oncology nursing that they hold dear. COVID-19 has challenged the core beliefs of hands-on care, human touch, and close human connection. Ferrell leads the End of Life Nursing Education Consortium (ELNEC) project which has developed many resources for nurses including topics such as self care.

“We’ve spent our entire career focusing on patient- and family-centered care. We want families at the bedside. We believe that no one should die alone. [But] we are now told we can’t let anyone at the bedside, even when someone is dying,” Ferrell said. The moral injury nurses feel when they tell a family member over the phone that they cannot visit can contribute to burnout. “These big, important things affect how we do what we do,” Ferrell acknowledged.

Ferrell advises nurses and nurse leaders to step back, have a moment of compassion and grace, and tell each other that they are doing the best they can. There will come a time when they are through this. She hopes oncology organizations will then take the time to talk about what happened. Although orga-nizations may want to just move ahead, Ferrell believes that is not the answer. An important part of the healing will be talking about what it was like and employing debriefing as an opportunity to grow. “When it comes to burnout, self-care, and resiliency, the wise organization will be the one that takes the time to really deal with what happened and how that felt,” she said. She also encourages nurses and organizations to find reason to celebrate. “Part of self-care is to say, ‘What did we do really well? What went right?’”

Burn-out an “occupational phenomenon”: international classification of diseases. World Health Organization. May 28, 2019. Accessed July 5, 2020. 

https://www.who.int/mental_health/evidence/burn-out/en/

Nursing professionals pulse survey: 2020 pandemic. NurseGrid. Accessed July 5, 2020. 

https://nursegrid.com/help-nurses-now/survey-results/

Jarrad RA, Hammad S. Oncology nurses’ compassion fatigue, burn out and compassion satisfaction. 

Sullivan CE, King AR, Holdiness J, et al. Reducing compassion fatigue in inpatient pediatric oncology nurses. 

Articles

Burnout is no new phenomenon in the world of oncology nursing, but the recent COVID-19 pandemic has exacerbated these feelings. Thankfully, nurses are creating ways to help.

Mitigating Compassion Fatigue and Nurse Burnout Amid COVID-19

Chris Helfrich, RN, CDDN, is a certified developmental disabilities (DD) nurse who supports adults living in residential group homes throughout the state of Illinois. As a policy and procedure influencer and frontline educator, Helfrich works tirelessly to improve the delivery of person-centered care for individuals living with disability, including those at risk for or diagnosed with cancer.

Lauren Clark, RN, PhD, FAAN, is a professor and the Shapiro Family Endowed Chair in Developmental Disability Studies at the UCLA School of Nursing. Her work is drawing attention to the big picture of disability, which includes 54 million Americans, or 20% of the population, as well as those with developmental disabilities, intellectual disabilities, or both.

®, Helfrich and Clark discussed some of the healthcare barriers faced by persons with DD and offered practical advice for nurses on how they can help improve the care delivery for this demographic.

Helfrich has worked with individuals with DD for 20 years. “It was tough in the beginning,” she recalled. “I was the only healthcare professional in the agency. My job involved visiting 1 group home after another and tending to the medical needs of the adults living there. I had no idea what I was doing.”

Helfrich needed guidance. Her search led her to the Developmental Disabilities Nurses Association (DDNA). “Here was this wonderful network of nurses who all provided the same type of care. Resources were few and far between, so we kind of MacGyvered our way through situations and helped each other learn along the way.” Her position now is to hire, teach, and train nurses, in addition to lending assistance with complicated cases. Helfrich is quick to credit her success in the field to the attachment she has maintained with DDNA throughout the years.

When asked what’s it like for someone with DD (or their caregiver) to interact with the healthcare system, Helfrich had a personally meaningful story about a young woman at the ready. “She’s our biggest success, and her story is closest to my heart,” she began. “One day while helping this young woman shower, her caregiver noticed something different—a lump. Her caregiver didn’t know if the lump was a problem or not, but it was new, and anything new or different was supposed to be reported to the nurse. I happened to be the nurse.”

Helfrich explained that the young woman had cerebral palsy and quadriplegia, which affected her physically. Her muscles were contracted and stiff. She used a wheelchair and was unable to perform breast self-exams or notice something was wrong. She had no risk factors, no family history of breast cancer, and was not a candidate for routine screening. She was dependent, as are many individuals with DD, upon others—typically unlicensed, minimum-wage caregivers&mdash;for help with basic daily activities, such as dressing, grooming, and bathing.

The caregiver’s actions of recognizing something different and reporting the change to the nurse are commendable, but not common, according to Helfrich. Nurses may rely on caregivers being forthcoming when something is different or out of the ordinary, but she thinks that might be asking a lot. “However, when they do share things with us,” she stressed, “nurses and medical staff need to take it seriously. I could have easily brushed off the comment about the lump. I could have said it was nothing and ignored it—but thankfully, that was not the situation. We pursued it.”

With three barriers overcome —failure to recognize, report, and pursue&mdash;the next action was to schedule a mammogram. Although community hospitals may have wheelchairaccessible parking spots, ramps, and doors, most do not have equipment adaptable to patients with DD.3 The nearest place with wheelchairaccessible mammography equipment could be many miles and several hours away. In this case, overcoming the fourth barrier, failure to accommodate, required a 90-minute drive to a facility with equipment that fit.

“Nurses who work with persons with DD know we are dealing with a medical community that doesn’t know how to support them or meet their needs because of the specific challenges they may have,” Helfrich said. Research backs up this sentiment with data that shows adults with disability significantly under-utilize the healthcare system compared to adults without disability.

Individually and as a group, persons with disability encounter more barriers to care, receive less care, and are given care of poorer quality.

The woman was diagnosed with cancer, and continued to face barriers with the healthcare system.

“Consent for treatment is another example of a barrier to care, especially for people who are cognitively intact but cannot communicate very well—like this young woman,” Helfrich recounted. She explained how frustrating it was trying to advocate on her behalf; she ran into pushback from surgeons who would accept nothing less than verbal consent. “This adult woman was her own guardian. She knew exactly what she signed up for (a double mastectomy), and what to expect. The surgeons refused to accept consent without a medical POA.” They were able to overcome barrier no. 5, failure to acknowledge and accept, and proceed with the lifesaving surgery. This story continues to serve as fuel for Helfrich. “I am committed to advocating for persons with DD to be treated as any other person would be treated.”

Clark’s passion for understanding the needs and experiences of persons with developmental disabilities is evident and inspiring. Although she has been in her position at the UCLA School of Nursing for less than a year, it seems a perfect fit. She is a treasure trove of information and believes that the more nurses know about developmental disability, the better prepared they will be to meet the needs of patients with DD.

“Developmental disability, by definition, occurs before the age of 22. It includes ADHD, learning disability, intellectual disability, autism spectrum disorder, Down syndrome, seizure disorder, cerebral palsy, spina bifida, fetal alcohol syndrome, hearing and vision impairment—it’s a big group of people,” Clark said. She added, “Some of those disabilities could happen before age 22 as a result of childhood cancer treatment&mdash;like hearing loss or intellectual disability. Or in reverse, persons with pre-existing developmental disabilities can also get cancer.”

Clark said it is important for nurses to understand that there are sets and subsets of disability and differences between them. The populations are distinct but overlapping and often confusing. Unlike DD, which occurs before age 22, intellectual disability happens before age 18. It is defined as impairment in intellectual functioning and adaptive behavior, which includes social and practical skills.3

When it comes to the experiences of individuals with DD in the healthcare system, Clark shared the story of a man in his late 40s who lived in a group home in England. He had complained that it hurt to urinate, which the doctor attributed to a UTI, and he was prescribed antibiotics to take. He finished the medication but continued to complain. The staff at the group home shrugged it off, saying he just loved attention. His complaints continued. On a return visit, his doctor diagnosed him with penile cancer. The tumor was the size of a small melon. Sadly, this young man died.

“Unfortunately,” Clark said, “what happened to him is so common it has a name: diagnostic overshadowing.” Diagnostic overshadowing happens when physical signs and symptoms are falsely attributed to the disability, rather than investigated as a new, perhaps serious problem.4 Clarke admitted, “Caregivers may be well-meaning when telling the person to hush up and stop bothering the nurse, but disregarding complaints, signs, or symptoms leads to detrimental outcomes.”

Clark encourages oncology nurses to give extra care and attention to persons with disabilities and offers these tips:

• Humanize oncology care, and get to know the person with a disability, such as their favorite pet, food, and movie.

• Listen: Enter their world and find out what gives their life value.

• Mark progress through treatment using visual aids.

• Make the person comfortable: Offer food, bathroom visits, a favorite blanket, or activities for self-soothing. Address unexpected sounds or a noisy environment.

• Suggest someone familiar remain in the room with the patient.

• Communicate without interruptions; use simple words, speak slowly, and do not shout. Pause to avoid word overload.

Helfrich suggests that oncology nurses take a proactive approach with individuals with disabilities, such as:

• Obtain their medical history prior to the appointment.

• Ask about communication needs, behaviors, and mannerisms.

• Inquire about their responses to anxiety and fear.

• Find out what to expect and how to address the person. • Ask questions directly to the patient, not the caregiver.

• Ask for a passport of information. This is a growing trend.

Importantly, continue to ask to what extent nurses and other healthcare professionals can better the life of persons with developmental disability. Whereas for able-bodied individuals, quality of life might include longevity, time with family, and the ability to pass on wisdom, for persons with DD, such as the young woman who is surviving breast cancer, quality of life may be as simple and rich as being able to wake up and see friends.

Havercamp SM, Scott HM. National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. 

. 2015;8(2):165-172. doi:10.1016/j.dhjo.2014.1002.

Merten JW, Pomeranz JL, King JL, Moorhouse M, Wynn RD. Barriers to cancer screening for people with disabilities: a literature review. 

. 2015;8(1):9-16. doi:10.1016/j.dhjo.2014.06.004.

AAIDD website. Frequently asked questions on Intellectual Disability 

www.aaidd.org/intellectual-disability/definition/faqs-on-intellectual-disability

Blair J. Diagnostic overshadowing: see beyond the diagnosis. University of Hertfordshire Intellectual Disability and Health website. 

www.intellectualdisability.info/changing-values/diagnostic-overshadowing-see-beyond-the-diagnosis

There are special considerations when treating patients with developmental disabilities who have cancer.

Ellen Rice Tichich, MFA, MSN, RN, NPD-BC

Articles

Mitigating Compassion Fatigue and Nurse Burnout Amid COVID-19

Delivering Person-Centered Cancer Care to Individuals with Developmental Disabilities