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
BRIDGING THE KNOWLEDGE GAP
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.
IMPROVING QUALITY OF LIFE
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.
PEDIATRIC PALLIATIVE CARE
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.
UNIQUE NEEDS OF VETERANS
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 Oncology Nursing News®.
“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.”
THE ROAD AHEAD
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.
Talk about this article with nurses and others in the oncology community in the General Discussions
Oncology Nursing News discussion group.