Primary palliative care education vital for APRNs to help meet ‘tremendous need’
More than 1.7 million people in the United States will be diagnosed with cancer and approximately 607,000 are expected to die of the disease this year, according to data from the American Cancer Society.
In addition, there are 15.5 million cancer survivors in the U.S., representing 4.8% of the population.
Throughout the country, oncology advanced practice registered nurses (APRNs) assess and manage these patients’ physical, psychological, social and spiritual symptoms. By partnering with the interdisciplinary team, oncology APRNs help to lighten the burden cancer brings to patients and their families. Our goal is always to prevent suffering and promote better quality of life, and this is accomplished most efficiently by providing primary palliative care.
The NCI defines palliative care as “an approach to care that addresses the person, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social and spiritual problems.”
The Oncology Nursing Society (ONS) recognizes the critical role oncology nurses play in providing palliative care. For example, in a 2017 position statement, ONS confirmed that all patients with cancer benefit from palliative care, recommending this care begin at the time of a cancer diagnosis and continue through bereavement.
In tandem, ASCO recommends all patients with advanced cancer be referred to an interdisciplinary palliative care team, which provides inpatient and outpatient care early in the course of the disease and treatment.
Urgent need for primary palliative care
Because these national organizations are committed to providing excellent palliative care, it is vital that all oncology APRNs be educated in primary palliative care.
This APRN education is particularly important as the U.S. population ages, cancer rates and the number of cancer survivors rise, and the number of hematology/oncology specialists decreases.
Although cancer death rates have declined, the number of cancer survivors has increased, and the American Cancer Society projects it will continue to grow from the current 15.5 million to 20.3 million by 2026.
Meanwhile, there were approximately 12,000 hematology/oncology physicians in the U.S. in 2016, but those retiring will soon outnumber those who will enter the field, according to data from Leon-Ferre and Stover, published last year in Journal of Oncology Practice.
Recognizing a gap would occur, oncology practices in the U.S. began to more aggressively employ APPs. In 2017, ASCO reported 81% of U.S. oncology practices employed APPs, including nurse practitioners and physician assistants, compared with only 73% in 2015.
Oncology APRNs, working with their interdisciplinary colleagues, will fill the gap in assessing and managing patients with cancer through diagnosis, survivorship, relapse and death. This work is complex, and coordinated, evidence-based care is essential.
Today, two-thirds of hospitals across the nation have specialty palliative care teams, and approximately 27% of their patients have cancer. Although specialty palliative care teams cannot assess and manage every seriously ill patient, it is critical that all nurses be educated in primary palliative care to help meet this tremendous need.
Education is key
In 2017, NCI provided a grant to City of Hope, under the direction of Betty Ferrell, PhD, RN, MA, CHPN, FPCN, FAAN, to educate 500 pediatric- and adult-focused oncology APRNs throughout the nation.
The goal of this project — The End-of-Life Nursing Education Consortium (ELNEC)-Oncology APRN: Advancing Primary Palliative Care — is to offer five 3-day educational programs to prepare APRNs to provide primary palliative care in all settings. To date, three national courses have been held (in Pasadena, California, Washington, D.C., and Atlanta) and 297 oncology APRNs from 44 states and the District of Columbia have attended.
The curriculum’s foundation is built upon the fourth edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, which outlines and provides clear direction on how to improve access to quality palliative care for all patients with a serious illness, regardless of setting, diagnosis, prognosis or age. Nine modules are presented in the 3-day course, taught by leading national oncology APRNs:
- Domain 1: Structure and processes of care;
- Domain 2.1: Physical aspects of care (pain management);
- Domain 2.2: Physical aspects of care (nonpain symptom management);
- Domain 3: Psychological and psychiatric aspects of care;
- Domain 4: Social aspects of care;
- Domain 5: Spiritual, religious and existential aspects of care;
- Domain 6: Cultural aspects of care;
- Domain 7: Care of the patient at the end of life; and
- Domain 8: Ethical and legal aspects of care.
As with any project, success is reflected in 6- and 12-month postcourse participant data. Coordinators of grant-funded programs and funders want to see examples of dissemination and implementation of course content by the attendees.
Examples of what some of the participants have accomplished since attending the ELNEC-Oncology APRN course include:
- Partnering with and educating two local home care agencies to assist in providing palliative care services in the home;
- Organizing and leading community forums to educate the public about palliative care;
- Using ELNEC to develop a new palliative care course in a school of nursing;
- Developing a unit-based primary palliative care champion program, so nurses on each unit have the education and resources to promote palliative care to their seriously ill patients;
- Establishing ethics rounds in the radiation oncology department;
- Conducting primary palliative care presentations at local, state and national meetings (eg, ONS, Association of Pediatric Hematology/Oncology Nurses, Sigma Theta Tau International, American Academy of Hospice and Palliative Medicine/Hospice and Palliative Nurses Association Annual Assembly);
- Providing monthly 1-hour palliative care teaching sessions for residents and medical students rotating on the hematology/oncology service;
- Developing and sustaining an outpatient palliative care program, resulting in better pain and symptom control, more goals-of-care discussions and advance directives being signed. This has improved earlier access to palliative care vs. having these discussions during a time of crisis;
- Adding primary palliative care content to the oncology nursing residency program;
- Providing more timely recognition of patients who are at high risk and have a high need for psychological assistance (substance abuse, suicidal ideation, etc) and implementing counseling at the bedside; and
- Using music and art therapy to assist in creating a beautiful and peaceful space for staff reflection.
Each of the oncology APRNs who attended the course also participates in a 1-hour monthly webinar for up to 1 year after the course. The webinars provide opportunities for APRNs to hear from national leaders about specific palliative care issues, and give the APRNs time to share their work and lessons learned. This additional support has been critical to the continued mentoring of these nurses.
To date, over 90% of those who attended the ELNEC-Oncology APRN course attend each of the monthly webinars, which is significant given they are extremely busy with clinical and teaching responsibilities.
Opportunity to improve lives
As a new decade approaches, oncology APRNs will have numerous opportunities to improve the lives of their patients through primary palliative care.
As care becomes more complex, as patients present with multiple comorbidities, as survivors live longer with symptoms from their cancer and/or treatments, and as the number of hematology/oncology physicians decreases, APRNs will continue to be committed to increasing their knowledge in an effort to provide compassionate, evidence-based primary palliative care to the most seriously ill in our nation and to their families.
American Cancer Society. Cancer facts and figures, 2019. Available at: www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2019.html. Accessed Aug. 21, 2019.
Bruinooge SS, et al. J Adv Pract Oncol. 2018;9:585-598.
Center to Advance Palliative Care. Summary data. National Palliative Care Registry. Available at: registry.capc.org/metrics-resources/summary-data/. Accessed Aug. 21, 2019.
Ferrell BR, et al. J Clin Oncol. 2018;doi:10.1200/JCO.2016.70.1474.
Leon-Ferre RA and Stover DG. J Oncol Pract. 2018;doi:10.1200/JOP.17.00088.
NCI. Palliative care in cancer. Available at: www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet. Accessed Aug. 21, 2019.
NCI. Cancer statistics. Available at: www.cancer.gov/about-cancer/understanding/statistics. Accessed Aug. 21, 2019.
National Consensus Project. Clinical practice guidelines for quality palliative care, 4th edition. Available at: www.nationalcoalitionhpc.org/ncp-guidelines-2018/. Accessed Aug. 21, 2019.
ONS. Palliative care for people with cancer: position statement. Available at: www.ons.org/make-difference/ons-center-advocacy-and-health-policy/position-statements/palliative-care-people. Accessed Aug. 21, 2019.
Pirschel C. ONS Voice. “Caring for patients through all levels of survivorship.” Available at: voice.ons.org/news-and-views/caring-for-patients-through-all-levels-of-survivorship. Accessed Aug. 21, 2019.
For more information about the ELNEC-Oncology APRN project, visit www.aacnnursing.org/ELNEC. Two more national courses will be offered in 2020 and 2021. The ELNEC project is a partnership between the American Association of Colleges of Nursing and City of Hope.
For more information:
Pam Malloy, MN, RN, FPCN, FAAN, is director and co-investigator of the ELNEC project and special adviser on global initiatives at American Association of Colleges of Nursing. She can be reached at 655 K St. NW, Suite 750, Washington, DC 20001; email: firstname.lastname@example.org.
Disclosure: Malloy reports no relevant financial disclosures.