Reinforcing a commitment that palliative care is a priority, U.S. Senators Tammy Baldwin (D-WI) and Shelley Moore Capito (R-WV) reintroduced the Palliative Care and Hospice Education and Training Act (PCHETA), an ONS health policy priority that benefits both patients and healthcare providers, in July 2023. The bipartisan legislation would bolster the palliative care and hospice workforce and meet the increasing need for care by investing in training, education, and research.

Patients must receive palliative care earlier in their disease trajectory, while they’re still in active treatment, U.S. Senators Jacky Rosen (D-NV), Senator John Barrasso (R-WY), Tammy Baldwin (D-WI), and Deb Fischer (R-NE) said. Working in rare bipartisan fashion, in June 2023 they reintroduced the Expanding Access to Palliative Care Act to pay for Medicare beneficiaries to receive comprehensive palliative care services concurrently with curative therapy.

Patients with advanced cancer who met with community health workers between their regular cancer care appointments were less likely to require acute care and more likely to participate in advance care planning and receive mental health, palliative, and hospice care, according to study findings published in JAMA Oncology.

Few things carry more stigma in the United States than death and hospice. Death is familiar in oncology, yet providers may not discuss it with patients until their cancer has progressed to the point that medical intervention is no longer an option. With the American Cancer Society estimating more than 600,000 American deaths from cancer in 2022, it’s time to change our practice.

The Palliative Care and Hospice Education and Training Act (PCHETA), an ONS health policy priority that supports both patients and the profession, returned to the U.S. Senate floor in May 2022. Senators Tammy Baldwin (D-WI) and Shelley Moore Capito (R-WV) reintroduced the bill to improve and sustain the workforce and the well-being of patients and their families with life-threatening illnesses.  

When hearing results from blood work or repeat imaging—regardless of whether they are “good” or “bad”—patients want and deserve to be given information truthfully and objectively. Oncology advanced practice providers are often the bearers of bad news, which can be uncomfortable and stressful. But here’s how you can hold those conversations with finesse, empathy, and respect.

Early and regular integration of palliative care (PC) improves patient and caregiver outcomes in symptom management, quality of life, psychosocial health, communication, shared decision-making, overall satisfaction—and even survival. Health systems also benefit through reduced emergency department visits, hospitalizations, and intensive care stays; increased completion of advanced directives; and improved quality of end-of-life care. Both the Centers for Medicare and Medicaid Services’ (CMS’s) Oncology Care Model and many oncology organizations, including ONS, support the approach for patients with cancer.

Legislators across the United States are recognizing what ONS has advocated for more than a decade: the need for improved access to and better understanding of palliative and hospice care. In September 2021, Senator Tammy Baldwin (D-WI) and Representative Yvette D. Clarke (D-NY) voiced their support for palliative care through a letter to the U.S. Congress.

Introducing palliative care from the moment of diagnosis is an essential component of comprehensive care, but it becomes even more critical when patients contract the COVID-19 coronavirus during treatment.  

Last year, I was involved in the care of Emma (not her real name), a 22-year-old woman with duodenal adenocarcinoma. Cancers of the small intestine are very rare, accounting for less than 1% of all cancers diagnosed in a given year. Because the average age at diagnosis is 66 years, Emma was unusual to have been diagnosed at only 20. But Emma was an exceptional patient in many ways beyond her rare diagnosis: she was remarkably resilient for one so young and came armed with an incredible support system of loved ones.

Only 4%–9% of patients with ovarian or cervical cancer use palliative care, but the numbers are much lower for Hispanic and Asian women than for non-Hispanic White women, according to researchers’ findings reported in Data in Brief.

For its advocacy approach to the 117th U.S. Congress that convened in January, ONS increased its emphasis on palliative care and patient access, developing its 2021 health policy agenda to reflect the evolving healthcare legislation landscape. 

More than one million nurses and other professionals have received training in end-of-life (EOL) care through the End-of-Life Nursing Education Consortium (ELNEC) program in the past 20 years, the American Association of Colleges of Nursing reported on November 6, 2020. The training has transformed EOL care around the world, including for patients with cancer.

Over the past three years, Sharon, age 38, has been intermittently receiving treatment for ovarian cancer. She was initially treated with carboplatin and paclitaxel and remained in remission for 20 months. She responded well to second-line therapy (carboplatin, gemcitabine, and bevacizumab), remaining on bevacizumab maintenance until she experienced a relapse eight months later.

Oncology Nursing Society member Betty Ferrell, PhD, MA, FAAN, FPCN, director of the division of nursing research and education at City of Hope in Duarte, CA, was one of 14 recipients of an American Society of Clinical Oncology (ASCO) special award in April 2020. She received the Walther Cancer Foundation Palliative and Supportive Care in Oncology Endowed Award and Lecture for her work in palliative care.

The concept of providing comfort is at the core of my identity as a nurse, and I have always been drawn to the palliative care component of what we do as oncology nurses. Because it wasn’t part of my roles, I was less confident in my knowledge and understanding of chemotherapy administration, but I often thought, “Palliative care, yeah, I’ve got this!”

And then I learned how little I knew.

At a recent conference I attended, a presenter asked the audience to choose the best treatment option for a case study review. The choices were introduced as three separate viable treatments with the fourth option being “or just refer to palliative care.”

ONS is a critical voice in the advocacy arena, helping to steward bills that are important to the future of oncology nursing practice and successful patient-centered care. On October 28, 2019, two ONS priority bills—the Palliative Care and Hospice Education and Training Act (H.R. 647) and the Title VIII Nursing Workforce Reauthorization Act of 2019 (H.R. 728)—passed the U.S. House of Representatives with unanimous bipartisan support.

After years of confusion, discussion, debate, and dedicated advocacy work, lawmakers are finally understanding what palliative care is—symptom management, not hospice—and how it’s employed in care. The benefits of early palliative interventions for many diseases, including cancer, can improve quality of life for patients as they navigate their diagnoses. To increase awareness and availability of palliative care in practice, Senators Jacky Rosen (D-NV), John Barrasso, MD (R-WY), Deb Fischer (R-NE), and Tammy Baldwin (D-WI) launched the bipartisan Senate Comprehensive Care Caucus on July 31, 2019.

With our heads held high, Michelle Santizo, RN, PHN, MSN, and I walked right into Capitol Hill, ready to tackle meetings with important members of the U.S. Congress. On that day in July 2019, we spoke with staff members working for the offices of both Kamala Harris (D-CA) and Diane Feinstein (D-CA).

The Palliative Care and Hospice Education Training Act (PCHETA) is a key ONS policy priority. After unsuccessfully navigating both chambers of the 115th Congress prior to the 2018 midterm elections, the bill had to begin its legislative journey once again in the new 116th congressional session.

An ONS priority bill, the Palliative Care and Hospice Education and Training Act (PCHETA) emphasizes how providers are educated and trained in palliative care, enabling them to provide a higher level of care to their patients. PCHETA legislation—and its reception on Capitol Hill—has evolved from being misinterpreted as training providers to hasten death to a true understanding that palliative care is patient-centered care, and it provides patients and their family members with further treatment options, symptom management resources, and quality of life. In a display of bipartisanship, Senators Tammy Baldwin (D-WI) and Shelley Moore Capito (R-WV) reintroduced PCHETA legislation to the Senate floor for consideration.

In March and April 2019, the Centers for Medicare and Medicaid Services (CMS) issued several proposed and final rules that affect patient coverage for cancer-related benefits, payment models, and the paperwork nurses often complete to ensure those benefits are billed correctly.

For more than five years, the cancer advocacy community—along with the larger healthcare environment—has presented and promoted a comprehensive piece of legislation focusing on patient-centered care, palliative care training, and hospice education. Advocates are familiar with the Palliative Care and Hospice Education and Training Act (PCHETA)—an initiative that contains many of ONS’s policy priorities and one that ONS members have lobbied for on Capitol Hill.

A smartphone app that monitors patients’ self-reported cancer pain and uses artificial intelligence (AI) to differentiate urgent and non-urgent issues and provide real-time recommendations significantly reduced pain and pain-related hospital admissions, researchers reported in an abstract presented at the November 2018 Palliative and Supportive Care in Oncology Symposium in San Diego, CA.

Palliative care is a necessary inclusion in the care of all people with a serious illness, no matter the diagnosis or setting, and it’s the responsibility all healthcare providers, including specialty providers in oncology. The National Consensus Project (NCP) expanded on these two key tenets in its new release of the fourth edition of the Clinical Practice Guidelines for Quality Palliative Care. ONS is one of 80 organizations endorsing the new guidelines.

When Senator John McCain (R-AZ) passed away in August 2018 from aggressive glioblastoma just one day after his family announced he stopped treatment, it put a poignant highlight in Washington on a need of which oncology nurses are far too aware: palliative care and hospice. Ideally, palliative care begins at the time of a cancer diagnosis and is aimed at managing symptoms throughout the cancer journey. Hospice begins when a patient’s prognosis is six months or less, yet in most cases, as McCain’s illustrates, patients begin hospice far too close to death. Many point to a lack of awareness and education—for patients and the public as well as oncology nurses and other palliative care providers.

Advance care planning (ACP) is a process for patients and their families to discuss their wishes and goals of care for treatment and end-of-life care, clarify related values and goals, and state preferences through written documents and medical orders. In situations where a patient’s decision-making capacity is limited, healthcare providers turn to family members to make decisions. When no ACP conversations have occurred between patients and their families, family members are left to make decisions regarding life-sustaining treatment without input from the patient or with little knowledge of the patient’s wishes.

The breadth of understanding that can come from a face-to-face conversation is hard to underestimate. More than 100 oncology nurses discovered the power of advocacy, education, and one-on-one conversations during ONS’s 2018 Capitol Hill Days in Washington, DC.

The National Cancer Institute (NCI) released a short video featuring ONS member Ann O’Mara, PhD, RN, MPH, program director in the NCI’s Division of Cancer Prevention. She speaks directly about research  projects focusing on supportive and palliative care for patients with cancer. O’Mara specifically highlights a recent study determining the impact of acupuncture on pain for patients with cancer.

As a hematology and oncology nurse, I’ve seen countless patients in treatment and recovery, and I’ve seen some lose their fight against cancer. In June 2018, I had the privilege to represent ONS as the sole nurse selected to advocate for palliative care with one of ONS’s coalition partners, the Patient Quality of Life Coalition (PQLC), where I was able to share my perspective and the many aspects of my role as a nurse with congressional staff. As the sole practitioner in the five congressional meetings, I provided insight about how nurses interact with patients, particularly during cancer treatment.

Patricia Grady, RN, PhD, FAAN, has defined a generation of nurse science and patient-centered research, serving as the National Institute of Nursing Research (NINR) director for more than 23 years. Under her charge, NINR has grown into one of the foremost federal agencies supporting the scope of the nursing research community, driving groundbreaking initiatives and furthering clinical practice.

’Tis the season. Well, at least in DC, it’s an exciting time. A political year. A long summer recess. A host of bills that are on the verge of passing. We are all aflutter with anticipation of the possibilities. But legislators need to remember who sent them to Washington and for what reason. Advocacy begins at home, and elected officials are heartened by what their constituents request, especially when that legislation is bipartisan and emotional and can affect people’s lives.

On July 23, 2018, the U.S. House of Representatives passed by voice vote two ONS priority bills that would provide palliative care training, awareness, and research and funding to build the nursing workforce.

Oncology nurse scientists have pioneered efforts in symptom management research, including palliative and end-of-life care studies. Healthcare providers and researchers have strong consensus that palliative interventions should begin at the time of diagnosis for patients with cancer. The Clinical Journal of Oncology Nursing and Oncology Nursing Forum have published excellent articles in nearly every issue on topics of palliative care, quality of life, and symptom management issues. 

Patients with cancer experience many feelings: they’re frightened and they’re hopeful, but mostly they’re in a new world. Symptoms associated with cancer and its treatment are taxing on patients’ physical, emotional, and spiritual well-being. In some cases, cancer-related symptoms and side effects are so debilitating that providers struggle to manage them just to get patients to a point where they can continue their treatment. Oncology nurses can lead the interprofessional care team to work together to proactively manage symptoms to ensure patients can endure treatment and come out as themselves on the other side. Proper symptom management doesn’t just promote quality of life but the best possible chance for patient survival.

As part of its mission, ONS honors and maintains nursing’s historical and essential commitment to advocacy for the public good. Working collaboratively with policymakers, cancer and nursing community advocates, and other stakeholders at the local, state, federal, and international levels, ONS seeks to integrate the nursing perspective throughout the policymaking process and urges that oncology nurses be appointed to all relevant federal panels, committees, commissions, and boards. During its September conference call, the ONS Board of Directors focused on two key areas of ONS advocacy.

As a national nursing organization with a specialty in cancer care, ONS occupies a unique space in the healthcare public policy environment. When nurses speak, decision makers listen, because nurses are the most trusted healthcare providers. This is not an insignificant fact to those who decide how to implement health policy decisions through law and the regulatory system.

By Fran Fanning, RN, BS, OCN