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.  

Advance Care Planning 

Appropriately defining the difference between palliative and end-of-life care can improve AYAs’ engagement with services such as advance care planning—a specific step that increases AYAs’ likelihood of receiving early palliative care. However, many palliative and hospice care services are geared toward pediatric or adult populations and may not meet AYAs’ unique needs, impeding effective care planning.  

Palliative Care Teams 

Because of that gap, more than 44% of AYAs with cancer receive high-intensity care at the end of life, and many are referred to palliative care with moderate to severe symptoms. However, consulting palliative care teams for support or referrals to manage end-of-life care decreases intensive treatment and intensive care admissions at AYAs’ end of life.  

Palliative care teams are staffed with specialized providers to manage symptoms, facilitate difficult conversations, identify care preferences and goals, and address social, spiritual, and cultural needs. Introducing palliative care early in treatment, rather than during a crisis or when curative treatment is no longer an option, gives AYA patients time to openly discuss their preferences and allows their care team to align their end-of-life experience.

AYAs’ Unique Needs 

Adolescence is the time when individuals start to create coping skills, build independence, develop logical and abstract thinking, and plan future goals. A terminal illness like cancer may interfere with AYAs’ typical developmental changes as they become more dependent on parents and caregivers and face challenges with fulfilling educational and life goals, increasing their distress.  

AYAs and their parents may not always agree on care choices or even know their end-of-life preferences, adding to distress and feelings of isolation. Most AYAs with cancer prefer to die at home but do not want to burden their family, cause financial hardship, or have inadequate control of pain or other symptoms.  

Oncology Nurses’ Role: End-of-Life Discussions 

Beginning end-of-life discussions—ideally before a medical emergency—to allow AYAs to process their preferences, choices, and logistics can help alleviate distress for patients and families. By tailoring the conversation to each individual, encouraging openness and honesty, and providing support and guidance, nurses can help AYAs understand what is happening, reduce anxiety, encourage shared decision-making, and give them a sense of control, self, and independence while balancing their needs and choices with those of their family.  

Structured care planning tools, such as ONS’s advance care planning worksheet, can guide discussions and help AYAs consider and document their choices. The tools can also document treatment information and toxicities when transitioning to end-of-life care.   

See the sidebar for additional resources that oncology nurses can use to support their AYA patients and families at the end of life.