During the last month of life, non-White patients are more likely to receive aggressive care with little to no focus on palliative or end-of-life (EOL) care for their ovarian cancer, researchers reported in Cancer.

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.

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.

“I don’t want to die.”  “What is my prognosis?”  “Is this a death sentence?” 

As oncology nurses, heart-wrenching questions like these are part of our day-to-day work. So how do we address patient concerns in a compassionate yet professional way? How do we respond to a patient with stage IV cancer who exclaims they only have two more cycles of treatment until they’re cured? How do we explain to patients with cancer that their journey is not short term?  

“It’s going be okay.”

That common phrase is full of meaning, yet so vague. Often, it’s a patient’s response when they’re first diagnosed or are told that all of the treatments have failed and they only have a few months to live. Other times, a family member will voice the remark when holding a patient’s hand as they provide comforting hope or temporary relief from distress. Sometimes an oncology nurse shares the phrase in an attempt to calm the agony their patients face each day.

Senator John McCain’s (R-AZ) family announced on August 24, 2018, that McCain has elected to stop treatment for his glioblastoma, a rare and aggressive form of brain cancer. Although his health had surpassed his original prognosis for many months, “the progress of disease and the inexorable advance of age render their verdict. With his usual strength of will, he has now chosen to discontinue medical treatment,” his family explained.

With more states legalizing medical aid in dying options for patients, the process is often vague and misunderstood. One patient, Aaron McQ, shared his story as he prepared to self-administer his life-ending medication. His story explains the nurse's key role in education and shared decision making to address the concerns of the patient.

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. 

When physician-assisted death mandates were passed in states like Oregon, Washington, and California, guidelines were established for practitioners as part of election mandates. However, in states like Montana and Vermont, the legalization of assisted death went through the legislature without process and practice guidelines. Therefore, practitioners have little or no framework to implement the process of medical aid in dying.

Despite groundbreaking treatments, novel medications, fast-tracked drug approvals, and cutting-edge science, a terminal diagnosis is still a reality for many patients with cancer. Having end-of-life discussions with patients and their family members is a difficult part of oncology nursing, but it’s necessary to provide the highest quality of care and education possible. With more news reports emerging about states introducing—and passing—medical aid in dying legislation, oncology nurses will face questions about the process from patients and caregivers.

Having an outlet to consider, discuss, and reflect on oncology ethical issues that affect our daily practice is important in caring for each other in our profession. On our solid tumor oncology unit, monthly nursing ethics lunch and learns allow our nurses the opportunity to identify and discuss their concerns with recent patient cases involving ethical issues. Our hospital’s ethics committee chair facilitates the hour-long discussions held on the unit, along with a senior oncology nurse with significant training and background in clinical ethics.

After a flurry of proposed legislation to repeal and replace Obamacare—the unofficial name for the Affordable Care Act (ACA)— the GOP has shifted its focus to other policy issues. In fact, many Republican senators and congressional representatives have removed any mention of the healthcare law from their websites. With the 2018 midterm elections approaching, GOP lawmakers are seemingly breaking with the Trump administration’s stance on the healthcare law, recognizing that their constituents may be in favor of the ACA’s many protections.  

Beyond the emotional complexities of end-of-life care, a multitude of cultural nuances and differences can affect the care that oncology nurses need to provide to their patients and family members. As the face of the healthcare team, oncology nurses are often called on to navigate this delicate area within the cancer continuum.

Phil is a 63-year-old man who is admitted to the inpatient oncology unit for severe pain resulting from metastatic small cell lung cancer. His wife and two daughters are at his bedside. Earlier in the day, the medical oncologist discussed additional treatment options or hospice care. Phil decided on comfort care with the hope of getting his pain managed and going home on hospice.

According to the results of a study published in the Journal of Clinical Oncology, African American and Hispanic patients with ovarian cancer who lived in Texas were more likely to receive invasive or toxic treatment and be admitted to intensive care in their final month of life than their Caucasian counterparts.