Although death rates have been falling 0.9% each year, cancer is the fourth leading cause of death in adolescents and young adults (AYAs), following accidents, suicide, and homicide. It is the leading cause of death from disease among AYAs assigned female at birth and second leading cause of death from disease for AYAs assigned male at birth. Approaching an AYA patient’s end of life can be difficult for patients, family, and the cancer care team, but oncology nurses can provide support for all involved.   

A multimodal nursing education intervention using ONS resources, didactic teaching, and small group discussions grew one institution’s advance care planning (ACP) documentation rates from 0% to 63%, according to a report published in the February 2023 issue of the Clinical Journal of Oncology Nursing. Nurse participants also reported increases in ACP discussions and a clinically significant improvement in their overall comfort level with ACP conversations.

Advance care planning (ACP) is an integral part of treatment planning that supports patients at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. ACP is individualized to each patient’s unique circumstances, with more support and specific decision-making provided as the planning progresses. It’s particularly important for patients with cancer, but communication challenges can delay ACP initiation.

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.

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.

Marianne, an oncology nurse navigator, is preparing a cancer treatment summary and survivorship care plan for Sylvia, who finished breast cancer treatment six weeks ago. Sylvia was treated with neoadjuvant therapy followed by mastectomy, reconstruction, and radiation. Her tumor was characterized as multifocal invasive ductal carcinoma, grade 2, estrogen and progesterone positive, and HER2/neu negative. Sylvia has no family history of breast cancer. Marianne notices that the oncologist recorded Sylvia’s cancer as a stage IB. Marianne wonders if the stage was determined before or after chemotherapy and surgery.

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.

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.

ONS joined the Patient Quality of Life Coalition (PQLC) in signing a final comment letter to the Centers for Medicare and Medicaid Services (CMS) administrator, Seema Verma, on the agency’s proposed 2018 updates to the Quality Payment Program, CMS-5522-P. PQLC, which represents patients, health professionals, and healthcare systems, advocates for palliative care for patients and families facing serious illness.

The American Nurses Association (ANA) launched a grand challenge this year: Healthy Nurse, Healthy Nation. The premise is that we are the largest health professionals group but also rate poorly on health indicators. If we improve our health, we can be role models for our family, friends, patients, and community. ONS is supporting the ANA challenge, and I hope you have seen the weekly ONS tips that will help in this challenge.

In late June, I had the opportunity to wear two advocacy hats: one for ONS, and one for the National Coalition for Cancer Survivorship (NCCS). It was an incredible experience to walk the halls of the U.S. Congress to help educate elected officials and their staff on legislation that affects cancer care.

Daniel is a 55-year-old male diagnosed with stage III nasopharyngeal cancer. He lives with Jon, his partner of 4 years. One day, he is taken by ambulance to the ED where it is determined he had an ischemic stroke. He has no advanced directives or living relatives. What would you do?