Palliative care nurses encourage decision-making and improve the quality of life for seriously ill patients and their families.
Thanks to continuing advances in health care and technology, people are living much longer, even after developing serious illnesses. According to a 2019 report from the Center to Advance Palliative Care, 12 million adults and 400,000 children in the United States are living with a serious illness (cancer, heart or kidney disease, dementia, etc.).
“People live with serious illness longer, and we need to be able to provide the best care possible for them to manage symptoms and assist with decision-making about goals of care and treatment preferences,” says Joan Carpenter, PhD, CRNP, ACHPN, FPCN, assistant professor, who conducts research focused on palliative care.
Palliative care is intended to help people living with a serious illness live well. It helps them stay at home rather than having to go to the emergency room or the hospital. Offered by an interprofessional team of providers, it reduces physical discomfort, improves quality of life, and makes living with a serious illness easier – both for the patient and for those who care for them.
Palliative care is appropriate for patients of any age and at any stage of serious illness, Carpenter says. A person living with dementia and their care partner may receive palliative care to discuss disease trajectory and support with difficult treatment decisions. A person with congestive heart failure may receive palliative care for treatment of shortness of breath and anxiety to improve their quality of life.
ADVANCING EDUCATION
While palliative care is receiving increased awareness among health care providers and patients, most under- graduate nursing programs haven’t offered much palliative care education beyond one or two lectures, says Janet Wulf, DNP ’19, MS ’06, RN, CNL, CHPN, CNE, assistant professor and director of UMSON’s entry Clinical Nurse Leader master’s option.
The American Association of Colleges of Nursing (AACN) and End of Life Nursing Education Consortium have advocated for refocusing nursing education to teach competencies for delivering primary palliative care, which is defined as palliative care provided by clinicians who are not palliative care specialists. Primary palliative care is provided to individuals affected by a life-limiting or life-threatening condition.
“Primary palliative care is the care that every nurse should be able to provide to patients who are suffering physical, spiritual, psychological, or social distress,” Wulf says. “Palliative care is profoundly and naturally embedded in good nursing care.”
AACN, which establishes standards for nursing education, released its latest The Essentials: Core Competencies for Professional Nursing Education in spring 2021 as a blueprint for the necessary curriculum content and expected competencies of bachelor’s, master’s, and Doctor of Nursing Practice graduates to transform nursing education. The new document outlines four important domains that make up the discipline of nursing, one of which is hospice/palliative/supportive care.
UMSON introduced a revised curriculum last fall for the entry Bachelor of Science in Nursing (BSN) program to align with the new Essentials; it includes a new required primary palliative care course for all BSN students, one of the first required such courses in the country. Wulf is part of the team of faculty members who developed content for the course, alongside Hannah Murphy Buc, MSN, RN, CNE, clinical instructor and director of the entry BSN program; Melissa McClean, MSN, ANP-BC, NP-C, ACHPN, clinical instructor; and Ann G. Hoffman, DNP, RN, CNE, CPN, assistant professor.
“Every nursing student needs to have a course in palliative care, so they feel comfortable identifying unmet palliative needs in their patients,” Wulf says. “They’ll have a toolkit to address those needs to the extent they can, and if they’re not able to address them, then the nurse works with the medical team to involve specialists in palliative care.”
Murphy Buc says she is enthusiastic about the primary palliative care education that UMSON’s BSN students will receive moving forward. They will be able to assess a patient’s goals for care, talk about the patient’s decision- making capacity and who might make decisions for them, and prioritize appropriate nursing assessments and inter-ventions for a patient receiving palliative care versus a patient whose goal is curative treatment, Murphy Buc explains.
IMPROVING PATIENT CARE
Murphy Buc recalls experiencing a great deal of moral distress during her early career working in a surgical intensive care unit (ICU) that her subsequent work in palliative care helped alleviate. “One of the most upsetting pieces to me was the way in which I saw people die in an intensive care setting,” she says. Murphy Buc became interested in end-of-life discussions and eventually sought additional palliative care education.
“Palliative care helped me to see that there are so many ways that we can improve what we’re doing in every practice area if we’re thinking through the lens of whole patient and whole family care,” she adds.
UMSON is preparing nurses to deliver primary palliative care in a hospital setting, but faculty recognize that traditionally marginalized groups disproportionately suffer from serious illnesses and have limited access to high-quality, person-centered equitable care. In addition to her work as the BSN program director, Murphy Buc is a doctoral student researching hospice care among patients who are experiencing homelessness or a vulnerable housing situation.
“Hospice and palliative care operate on the assumption that a patient has a home and a support network,” Murphy Buc says. “Especially among marginalized populations, those assumptions aren’t fair. We know what the barriers are, but how do we set up a situation where communities with health disparities can access excellent palliative and hospice care?”
Several research studies with cancer patients reveal that the earlier palliative care is introduced to patients, the longer patients will live. In addition, quality of life for patients and their families improves and patient satisfaction improves, a metric that hospital systems closely track because patient satisfaction rates affect value-based reimbursement models from government insurance payers such as Medicare and Medicaid. The U.S. health care system has slowly been transitioning from the traditional fee-for-service model, which prioritized reimbursement based on a hospital or provider’s volume of patients, toward a value-based system of care (and reimbursement). Clinicians are beginning to see institutions adopt a patient-first approach that aligns with nursing’s goals of providing quality, compassionate care.
“The medical community is moving away from the traditional model of hierarchy, with an individual or physician dictating the way care is delivered,” McClean says. “Health care entities are concerned with end users – patients – being satisfied with their care, and offering a palliative care model improves patient satisfaction.”
Through her research, Carpenter has found that patients aren’t typically aware of different treatment options and how they may affect their quality of life.
“When we have conversations with people living with serious illness and talk about what kind of life they may live, I find people saying, ‘No one ever told me that,’” Carpenter explains.
With older adult patients who have serious illness, surgery often requires a stay in the ICU, and complications can occur. “We talk about the treatments and what life might look like after surgery,” Carpenter says. “It’s not just about the treatment itself, but how it will impact their quality of life and their ability to do the things they want to do in the future.”
TRANSFORMING HEALTH CARE
The U.S. health care payment model for a palliative care team remains challenging for patients and providers. Marian Grant, DNP ’10, ACNP-BC, ACHPN, FPCN, RN, FAAN, a former UMSON faculty member, is working with the Coalition to Transform Advanced Care, where she serves as a senior regulatory advisor, to explore new ways to offer and pay for palliative care benefits. For instance, recent Medicare regulations now allow Medicare Advantage plans, the type of Medicare provided by private health insurance companies, to offer home-based palliative care as a supplemental benefit to beneficiaries with chronic illness. Several states are also revising their Medicaid requirements to require palliative care benefits for those enrollees.
“State and federal government agencies recognize the benefits of palliative care services for their constituents and are now experimenting on ways to pay for it,” Grant says. “This is needed because current fee-for-service payment, where providers get paid for clinical visits and procedures, doesn’t reimburse for palliative care services like education or support to the family, or for non-billing members of the interdisciplinary team like nurses, social workers, or chaplains.”
In addition to the satisfaction that patients and their families report that they’ve received from palliative care, offering palliative care is a form of social justice, says B. Elias Snyder, MS ’14, FNP-C, ACHPN, clinical instructor and director of UMSON’s Office of Global Health. Snyder has practiced in palliative care and hospice nursing in a variety of settings internationally and domestically and is researching global end-of-life practices in his PhD program at the California Institute of Integral Studies. He explains that with palliative care, nurses and other providers aren’t choosing the health care goal; they’re putting that decision into the hands of the patient. “When providers give people honest information about treatment options and how those options might impact their lives, patients have the autonomy to make informed decisions that are aligned with their goals and values,” Snyder says.
Conversations between palliative care teams and patients require as much listening as talking, and the communication methods involved require just as much skill as other health care procedures. “Being able to have conversations about serious illness and treatment preferences is not easy,” Carpenter says. “We’re not born with those skills – many of us spend a lot of time learning them.” BSN students in the new palliative care course will participate in role playing and simulation exercises and learn about tools that help clinicians identify and respond to emotions and challenging questions.
Because nurses make up the largest portion of health care workers in the country, it’s vital that they’re prepared to provide the type of patient care that focuses on quality of life and symptom management. “Palliative care education has the potential to shift the practice of health care – if we get enough nurses taking time to know their patients’ wishes, I think they can help the health care team make better decisions with the patient’s family,” Carpenter says.
(pictured: Janet Wulf, left, observes a palliative care communication simulation involving Bachelor of Science in Nursing students in her Palliative Care course and a standardized participant, a person acting as a patient.)
GLOBAL CARE
While most U.S. hospitals have palliative care teams, there is a significant need for palliative care providers in community environments and in other countries around the globe. According to the World Health Organization (WHO), an estimated 40 million people around the world need palliative care, and 78% of them live in low- and middle- income countries. Worldwide, only 14% of people who need palliative care receive it.
Snyder has witnessed the suffering that patients in low- and middle-income countries endure due to limited access to life-sustaining treatments and palliative care. Snyder spends part of the year doing clinical work and conducting research in East African countries, including Tanzania.
He says that many providers in Tanzania are uncomfortable communicating with patients about serious illnesses. That experience inspired him to develop palliative care trainings at FAME Medical Hospital in collaboration with a team of physicians, nurses, and social workers to create modules and clinical practice guidelines that are culturally responsive and based on locally available resources, such as pain management options.
While the goals of palliative care are the same worldwide – easing suffering, advocating for patient autonomy, and supporting patients to make informed decisions – the assessments and treatment options may vary greatly among countries. In Tanzania, Snyder and his palliative care team adapted comprehensive assessments to include questions such as, “How far do you walk to get water?” “Do you have electricity?” “What’s your income – are you selling fruits and vegetables at the local market?” “What traditional practices and herbs do you use?”
The Tanzanian palliative care team must be resourceful with pain management techniques. If acetaminophen and ibuprofen are available (morphine and controlled medicines are nearly impossible to access), the team uses medications off label and creatively to manage pain and symptoms, while also including traditional medicine from community healers and herbalists.
Snyder is bringing what he’s learned from Tanzanian providers to meet the needs of individuals and communities in the Baltimore area, such as cleverly utilizing available resources to solve problems and emphasizing the importance of community in caring for people with serious illness. He plans to continue collaborating with Tanzanian colleagues to improve palliative care services in that country. “In the U.S., we’re always going to other countries, teaching new things and trying to help people,” he says. “Because no one country has all the answers, global health should have a bidirectional approach, where we’re both learning and growing with each other."
(pictured: Snyder, right, with Maasai Elders he met with to discuss end-of-life rituals; this photo is used with permission from these Maasai Elders.)
THIS ARTICLE FIRST APPEARED IN THE SPRING 2023 ISSUE OF NURSING FOR/UM MAGAZINE.