Humanizing Care and Addressing Fatigue in Patients With Brain Cancer

Patients who receive a brain cancer diagnosis face psychosocial difficulties and realities that shape their lives. While, more often than not, medical providers will often focus on disease progression, neurological symptoms and treatment planning, many patients identify cancer-related fatigue (CRF), highlighting the changes in identity or communication, as some of the most distressing aspects of the disease.

For patients navigating brain cancer, fatigue is not only tiredness, but profound, persistent exhaustion that affects physical, emotional and cognitive functioning. At the same time, cognitive changes can make patients feel unseen or unheard during medical interactions. This article explores the intersection of fatigue and person-centered care and presents practical strategies that nurses and physicians can use to support the whole person at the time of the diagnosis.

Understanding Cancer-Related Fatigue in Patients With Brain Cancer

Cancer-related fatigue is one of the most common and debilitating symptoms reported by patients diagnosed with brain cancer. Unlike typical tiredness, CRF is not disproportionate to activity level, not relieved by rest, and often can be unpredictable. In a cancer diagnosis like brain cancer, fatigue can be intensified by factors such as tumor location, neurological disruption, treatment side effects, sleep disturbances, and the cognitive effort required to complete even simple tasks.

Patients will frequently describe themselves as “mentally hitting a wall,” “moving through mud” or feeling like their brains are shutting down without a warning, leaving them immobilized.¹

Beyond the physical impact, fatigue carries emotional and psychological weight. Patients may experience frustration, guilt or shame when they can no longer maintain previous roles or routines. They may fear being perceived as unmotivated or disengaged, especially when their fatigue is invisible to others. Research shows that fatigue in brain cancer patients is strongly associated with distress, reduced quality of life (QOL) and increased vulnerability to depression.²

Despite its prevalence, fatigue is often under recognized in clinical settings. Competing medical priorities, time constraints, and the invisibility of the symptom can lead to unintentional minimization. Patients may also disregard their own fatigue, believing it is something they “should” push through. When providers proactively validate fatigue as a legitimate and expected symptom, patients often express relief and a greater willingness to discuss its impact.

The Human Experience of Brain Cancer: Preserving Dignity and Identity

Brain tumors can profoundly affect communication, cognition, and emotional regulation. Patients may struggle with word finding, slowed processing, memory lapses, or personality changes These shifts can alter how patients participate in conversations, make decisions, or express their needs. As a result, providers may unintentionally speak around the patient, addressing questions to caregivers, simplifying discussions excessively, or assuming the patient cannot meaningfully engage with their providers.

For many individuals, these moments can be distressing. Patients may feel reduced to their symptoms or disconnected from their sense of self. Studies highlight that patients with brain tumors often fear losing their identity more than physical decline³. Humanizing care becomes essential in this context. It involves recognizing the patient as a whole person, not just a clinical presentation.

Humanizing care can be expressed through small but powerful actions such as addressing the patient directly, allowing extra time for the responses, using clear and respectful language, and validating emotional experiences. Even when cognition is impaired, patients benefit from being included in conversations and decisions to the greatest extent possible.

Integrating Humanizing Care into Fatigue Assessments and Support

Supporting patients with CRF does not require lengthy interventions. A simple statement such as, “Your fatigue is real, and it’s a common part of your diagnosis,” can reduce shame and open the opportunity to a deeper conversation. Open-ended questions such as, “What does your fatigue feel like?” or “How is it affecting your day?” can help providers understand the patient’s lived experience rather than relying solely on quantitative scales.

Providers can also reinforce practical strategies that can empower patients to manage fatigue more effectively. These include pacing activities, conserving energy, maintaining consistent sleep routines, engaging in gentle movement when appropriate, and educating caregivers about realistic expectations. Referrals to counseling, occupational therapy, physical therapy, etc., can provide additional layers of support.

Humanizing care can also be woven into everyday interactions. Sitting at eye level, making eye contact, and asking what matters most to a patient that day can create a sense of safety and connection. Involving the patient in decisions, even when cognition may be impaired, helps preserve dignity and autonomy. These micro-interventions communicate respect and recognition, reinforcing that the patient is more than their diagnosis.

Conclusion

Fatigue and identity disruptions are central challenges for individuals living with brain cancer, yet they often remain under-addressed in clinical practice. By validating fatigue, slowing down communication, and preserving the patient’s sense of humanity, providers can significantly improve the care experience. Integrating humanizing care into neuro-oncology practice strengthens patient-provider relationships and supports emotional and psychological well-being of those navigating one of the most complex cancer journeys.

References

1. Campbell, R., Shaw, J. M., Carlick, T., Banks, H., Faris, M. M., Jeon, M. S., Legge, D. M. Legge; Foster, C.; Leonard, R.; Chan, R. J.; Agar, M. R.; Miller, A.; & Dhillon, H. M. (2024). “Such a different type of tiredness”: People with brain tumour, their caregivers’, and healthcare professionals’ qualitative perceptions of cancer-related fatigue. Journal of Cancer Survivorship, 1-19.
2. Armstrong, T. S., Shade, M. Y., Breton, G., Gilbert, M. R., Mahajan, A., Scheurer, M. E., Vera, E., & Berger, A. M. (2017). Sleep-wake disturbance in patients with brain tumors. Neuro-Oncology, 19(3), 323–335. https://doi.org/10.1093/neuonc/now119
3. Ownsworth, T., & Nash, K. (2015). Existential well-being and meaning making in the context of primary brain tumor: Conceptualization and implications for intervention. Frontiers in Oncology, 5, Article 96. https://doi.org/10.3389/fonc.2015.00096