By Hayley Feuchs, LMSW 

A cancer diagnosis often brings feelings of fear, anxiety, and a sense of losing control. For adolescents and young adults (AYAs), these emotions are intensified by the many uncertainties in their lives. Between work, school, employment, friendships, romantic relationships, and all the complex changes that arise during early adulthood, a cancer diagnosis can further compound an already confusing and often daunting time (Sansom-Daley & Wakefield, 2013). These multifaceted stressors can lead to heightened levels of emotional distress and difficult decisions. It is essential to provide the AYA population with as much control as possible during their cancer journey, emphasizing that their needs and desires are paramount throughout their continuum of care (Sansom-Daly et al., 2020).

The Role of Advanced Care Planning
Advanced care planning can be a powerful tool in lending AYAs the control they crave during their diagnosis and treatment experience. These plans outline a patient’s preferences for medical care and guide healthcare decisions when individuals cannot communicate their wishes themselves (Brighton & Bristow, 2016). They can include living wills, powers of attorney, and specific desires about treatments or interventions (Mayo Foundation for Medical Education and Research, 2022). 

Providing Education
Many patients and families require psychoeducation about advanced care plans. Patients may mistakenly believe creating such plans means they are at the end of life. As we know, this is not the case. Advanced care plans should be created early on and revised throughout an AYA’s life (Sansom-Daly et al., 2020). Social workers play a pivotal role in providing this education to patients and their families, ensuring that they understand the purpose and benefits of advanced care plans (Wang et al., 2017). 

In my work with AYAs through individual counseling and support groups, a common theme that arises is lack of information. Advanced care planning is often considered a taboo topic due to the intense emotions it evokes. When AYA patients are not provided with information on advanced care plans, they may struggle to initiate discussions about it themselves. Many patients have expressed that their care team has not broached the subject of advanced care planning, likely because of the challenges involved in initiating such emotional conversations. Research also indicates that only 26% of Americans have completed advanced care plans, with even fewer AYA patients having done so (Kavalieratos et al., 2015). In working with this population, social workers can empower AYAs to advocate for their wants, wishes, and desires by insisting the medical team initiate advanced care planning conversations throughout the continuum of care. 

Continuing Discussions
Social workers can assist patients in articulating their needs and desires regarding treatment, quality of life, and end-of-life interventions (Wang et al., 2017). They may guide patients through the process, helping them consider potential scenarios and determine what is important to them. These discussions are not one-time events, but rather ongoing conversations that evolve as the patient’s condition and preferences change. Although these conversations can be daunting to initiate, they often provide a sense of relief to patients (Sansom-Daly et al., 2020). Social workers advocate for patients, making this process less overwhelming by offering support, validation, and empathy. 

Providing Coping Tools
A cancer diagnosis brings a myriad of emotions to patients and their families. Oncology social workers, with their expertise, can offer practical tools to help manage anxiety, fear, anger, and sadness, especially during the advanced care planning process. Providing coping strategies and emotional support is not just essential, but it is a testament to the value social workers bring in helping patients navigate these difficult conversations and experiences (Sansom-Daley & Wakefield, 2013). Social workers can consider providing coping tools that emphasize grounding and relaxation to manage the powerful emotions that can emerge during these decisions. Deep breathing, meditation, muscle relaxation, noticing the five senses, journaling, and distraction are strategies that can help AYAs manage emotions throughout this process. 

Meaning-Making Conversations
Social workers can initiate meaning-making conversations during the advanced care planning process. When reflecting on their life, AYAs may question their values, future goals, the legacy they wish to leave. Social workers can help patients process the emotions that arise during these conversations, supporting them in creating and developing their narrative, which is essential in making sense of their diagnosis (Kearney & Ford, 2017).  

Communication and Advocacy 
A primary role of oncology social workers is to advocate for patients. Through advanced care planning, social workers ensure patients’ voices are not just heard, but respected and acted upon by communicating their desires to the medical team. Advocating for patients ensures that their preferences are implemented and respected, empowering both the patients and the social workers (Wang et al., 2017). 

Offering Resources
AYA patients’ families often need resources for their own personal, medical, and financial questions. Social workers can connect families with counseling, financial assistance, and other support services within their community. A holistic approach ensures that the entire support system surrounding the patient is addressed.  

Social Work Perspective
In CancerCare‘s young adults with cancer support group, a 32-year-old client recently shared her experience of creating an advanced care plan after following a stage four cancer diagnosis. Although emotional, she expressed a sense of relief when discussing her decisions. The client detailed the medical interventions she preferred and those she wished to avoid should she become unable to communicate her wishes. Her family initially reacted with hesitation, believing that it was “too early” to have such discussions and feeling that it did not align with her current treatment stage. Her parents and spouse were more focused on the various treatments proposed by her medical team that she had not yet tried.  

This client provided her family with the necessary education, emphasizing that she is not giving up on treatment or hope despite the multiple chemotherapy treatments and relapses that she endured. She continued to highlight the importance of communicating her desires while she was still able to do so. This conversation was pivotal in the support group and raised questions for other members who had not yet discussed care plans with their families or healthcare providers. 

By engaging in advanced care planning, AYAs can regain control during their diagnosis and treatment, when much feels out of control. Oncology social workers can assist in this process by empowering patients to make informed decisions, communicate their desires, and ensure that their needs are respected throughout their treatment trajectory. Utilizing a strengths-based approach, oncology social workers assure that patients are seen and heard by their support system and healthcare team. Ultimately, advanced care planning offers a way for AYAs to navigate the uncertainties of their cancer diagnosis, knowing that their voices will be heard, and their wishes will be honored. 

References
Barakat, A., Barnes, S. A., Casanova, M. A., Stone, M. J., Shuey, K. M., & Miller, A. M. (2013). Advance care planning knowledge and documentation in a hospitalized cancer population. Proceedings (Baylor University. Medical Center), 26(4), 368–372. https://doi.org/10.1080/08998280.2013.11929008 

Brighton, L. J., & Bristowe, K. (2016). Communication in palliative care: talking about the end of life, before the end of life. Postgraduate medical journal, 92(1090), 466–470. https://doi.org/10.1136/postgradmedj-2015-133368 

Kavalieratos, D., Ernecoff, N.C., Keim-Malpass, J. Degenholtz, H. (2015). Knowledge, attitudes, and preferences of healthy young adults regarding advance care planning: a focus group study of university students in Pittsburgh, USA. BMC Public Health 15, 197. https://doi.org/10.1186/s12889-015-1575-y