Amy Colver, LCSW
Melody Griffith, MSW, LMSW, OSW-C
AOSW Communications Director
Jeanice Hansen, LCSW, OSW-C
To submit a story or information for inclusion in a future issue of AOSW Newsletter, contact Amy Colver or Melody Griffith on the list above.
Brain Tumor SIG: Recognizing the Value of Early Neuro-Palliative Care Interventions: An Opportunity for Patient Education, Team Collaboration and Advocacy
Since November was National Hospice and Palliative Care Month, I want to shine some light on the value of integrating early neuro-palliative care interventions, which has received renewed interest from research findings in recent years.
Although underutilized in the past, the practice of neuro-palliative care is on the rise, especially in European countries, corresponding with an escalating number of trained facilitators (Vierhout, Daniels, Mazzotta, Vlahos, Mason & Bernstein, 2017). We know that palliative care, in general, is especially effective when introduced early to patients and their caregivers. Due to the depth-of-care needs, this is even truer for those individuals who have been diagnosed with a primary brain tumor.
I am an oncology social worker with the Brain Tumor Network, a national nonprofit organization dedicated to providing navigational services, free of cost, to patients and caregivers across the United States. I field many requests for patient education specific to helping families understand and overcome misperceptions regarding palliative care. A common theme that has arisen within these conversations is lack of early education regarding the value of neuro-palliative care, as well as how such services can be received in conjunction with active treatment. Recognizing that the integration of these services early on may feel like a careful dance between hope and the realities of a brain tumor diagnosis, there is an opportunity for team collaboration to make that careful dance more of a steady walk together. Paying attention to what our teams, patients and caregivers are not saying can be just as important as what we are saying.
Recent Research Findings
Patients with brain tumors differ from other populations of patients with cancer due to the complexity of the supportive care needs, the trajectory of the disease, the very short life expectancy with high-grade diagnoses, the presence of specific symptoms related to neurological deterioration and therefore the need for an appropriate palliative approach (Pace et al., 2014). “In fact, unlike systemic effects of other tumors and treatment, brain tumors have a direct effect on brain functioning affecting cognition, mood, and personality, with profound changes in mood and cognition and impairments in several dimensions of functioning and quality of life” ( Chambers, Grassi, Hyde, Holland & Dunn, 2015, p. 1). The National Comprehensive Cancer Guidelines (2019) for Central Nervous System Cancers inform us that palliative and pain management care should be integrated into management of neuro-oncology patients early into the course of their treatment. However, a survey of neuro-oncology care providers found that 29-46 % of providers did not feel comfortable dealing with palliative care and end-of-life discussions with the brain tumor patient population (Walbert & Pace, 2016). In reality, many of our patients and families simply are not having these active conversations with their care teams, early conversations that could and do significantly impact quality of life.
A 2009 Study by Schubart, Kinzie and Farace (2008) found that the rate of caregivers’ burdening and distress is higher in the case of primary brain tumors than in the general cancer population. Moreover, lack of communication and feeling unprepared worsen caregivers’ burden. Giammalva et al. (2018) state, “Since high grade gliomas represent also a family concern, due to the profound emotional and relational issues that the progression of the disease poses, palliative care may relieve the distress of the caregivers and increase the satisfaction of patients relatives" (pg. 1). However, as Sengupta, Rosen, Patel & Zarrabi (2018) demonstrate, “while the European countries have established palliative care guidelines based on clinical evidence and expert consensus, the United States continues to lag behind” (p. 535).
The 2017 study by Vierhout et al. explored the views of patients with brain cancer about palliative care. Not surprisingly, having a preconceived idea that palliative care is directly linked to active dying generated a fear in patients, causing some to be frightened and closed off to the idea of palliative care, especially for those who were newly diagnosed. Alternatively, the research also demonstrated a preference for patients to be educated early in their illness about palliative care, even if they are fearful of it. Once educated about the true definition of palliative care, patients expressed less fear, but still acknowledge that the stigma could be difficult to ameliorate.
In summary, OSWs working with patients and families impacted by a brain tumor have a profound opportunity to advocate for early palliative care discussions and provide the education needed to overcome common misperceptions. Continued advocacy and research such as the work from Sengupta et al. (2018) at the Winship Cancer Institute, which creates a call to action for the creation of palliative care guidelines for the brain tumor population, can be vehicles for change in the United States.
Considerations for OSWs
- How can we lead and help facilitate early discussions that educate our patients, caregivers and team members on the value of neuro-palliative care?
- In actuality, how can these early conversations help facilitate open communication, quality of life, a better understanding of perceived goals of care and ultimately hope?
- What barriers have you encountered?
The Brain Tumor SIG offers a wonderful way for OSWs with primary placements in a neuro-oncology setting to connect and learn from colleagues. If you would like to learn more about special interest topics in relation to the the care of individuals with brain tumors, I encourage you to join this SIG. You can learn more about it by visiting the Brain Tumor SIG on the AOSW website.
Chambers, S.K., Grassi, L., Hyde, M.K., Holland, J., & Dunn, J. (2015). Integrating psychosocial care into neuro-oncology: Challenges and strategies. Frontier in Oncology, 5(41), 1-6. doi: 10.3389/fonc.2015.00041
Giammalva, R.G., Iacopino, D.G., Azzarello, G., Gaggioti, C., Graziano, F., Guli, C., Pino, M., & Maugeri, R. (2018). End-of-life care in high-grade glioma patients. The palliative and supportive perspective. Brain Science, 8, 125. doi: 10.3390/brainsci8070125
National Comprehensive Cancer Network Guidelines. (2019). NCCN Clinical Practice Guidelines for Central Nervous System Tumors. Retrieved from https://www.nccn.org/professionals/physician_gls/default.aspx.
Pace, A., Villani, V., Pasquale, A. D., Benincasa, D., Guariglia, L., Ieraci, S., Focarelli, S., Carapella, C., & Pompili, A. (2014). Home care for brain tumor patients. Neuro-Oncology Practice, 1, 8-12. doi: 10.1093/nop/npt003
Schubart, J. R., Kinzie, M. B., & Farace, E. (2008). Caring for the brain tumor patient: Family caregiver burden and unmet needs. Neuro-Oncology, 10(1), 61-72. doi: 10.1215/15228517-2007-040
Sengupta, S., Rosen, H., Patel, R., & Zarrabi, A. (2018). The benefit of palliative care on brain cancer patients’ quality of life. EC Neurology 10.7, 532-535. Retrieved from https://www.ecronicon.com/ecne /pdf/ECNE-10-00361.pdf.
Vierhout, M., Daniels, M., Mazzotta, P., Vlahos, J., Mason, W.P., & Bernstein, M. (2017). The views of patients with brain cancer about palliative care: A qualitative study. Current Oncology, 24(6), 374-382. doi: https://doi.org/10.3747/co.24.3712
Walbert, T., & Pace, A. (2016). End-of-life care in patients with primary malignant brain tumors: Early is better. Neuro-Oncology, 18(1), 7-8. doi: 10.1093/neuonc/nov241