By Keisha Carden, MA (Doctoral Clinical Geropsychology Student, University of Alabama)
“Technically, I am still alive, but I’ve been dead for a long time. What was the meaning of it all?”
Elaina, seemed to be elsewhere as she shared this, her face void of affect. She was my 68-year-old in-home hospice patient suffering from a myriad of chronic health conditions with little time left to live. While I had used meaning-centered interventions with other clients, none had lived a life quite like this—a life peppered with physical, sexual, and emotional abuse, substantial self-harm, onerous failed attempts at healthy relationships and adaptive coping strategies, and an intimate familiarity with discrimination and prejudice. How could I help her make meaning of the senseless trauma, violence, and hate to which she had been subjected for so long? As a well-intentioned psychology scientist-practitioner, I looked to the evidence.
Like Elaina, many of our dying patients express the need for meaning—in life and in death. In palliative care, our primary goal is to facilitate comfort and maximize quality of life. We often employ interventions that emphasize the importance of meaning-making.
Unfortunately, these interventions seem to be overly individualistic and westernized, overlooking important aspects of intersectionality and cultural variations (e.g., Carden, Murry, Matthews, & Allen, in press). For example, Allen and colleagues (2016) reviewed the existing community-based interventions aimed at reducing the burden of palliative caregiving. Ten of the 17 interventions they identified were investigated among primarily (78% – 100%) non-Hispanic White participants and five studies did not report race. It is therefore conceivable that many palliative interventions fail to effectively assess and address the needs of many cultural groups.
So how do we move forward?
Back to the Basics
Meaning-based interventions are rooted in the teaching and writings of Viktor Frankl, founder of logotherapy and holocaust survivor. At their core, they assume:
human beings consist of body, mind, and spirit
life has meaning under all circumstances, even the most miserable
people have a will to meaning
people have freedom under all circumstances to activate the will to find meaning
life has a demanding quality to which people must respond if decisions are to be meaningful
the individual is unique
The individual is unique…
Have we lost sight of the individual in our efforts to be prescriptive and standardized in treatment development and delivery? It may be time to go back the basics and infuse our practice with more person-centeredness.
The scientific community seems to agree and is beginning to investigate innovative and creative solutions. These endeavors include utilizing culturally competent hospice educational materials (Enguidanos, Kogan, Lorenz, & Taylor, 2011), videos aimed at improving disparities in knowledge (Volandes, Ariza, Abbo, & Paasche-Orlow, 2008), employment of patient navigators (Fischer, Sauaia, & Kutner, 2007), and other peer support programs (Hanson et al., 2013).
What can you do?
It is time for researchers and providers to tackle this issue together. Research is needed that:
explores factors contributing to differences and disparities in end-of-life and palliative care
evaluates the effectiveness of current end-of-life interventions among diverse groups
considers appropriate and ethical modifications to said interventions to enhance quality end-of-life care for all.
In the meantime, providers must go back to the basics and rely on ethical standards to facilitate quality care to diverse patients and their families.
Allen, R. S., Noh, H., Beck, L.N., Smith L. J. (2016). Caring for individuals near the end of life. In L.D. Burgio, J.E. Gaugler, & M.M. Hilgeman (Eds.), The spectrum of family caregiving for adults and elders with chronic illness (pp. 142-172). New York, NY: Oxford University Press.
Enguidanos, S., Kogan, A. C., Lorenz, K., & Taylor, G. (2011). Use of role model stories to overcome barriers to hospice among African Americans. Journal of Palliative Medicine, 14(2), 161-168. doi:10.1089/jpm.2010.0380.
Fischer, S. M., Sauaia, A., & Kutner, J. S. (2007). Patient navigation: A culturally competent strategy to address disparities in palliative care. Journal of Palliative Medicine, 10(5), 1023-1028. doi:10.1089/jpm.2007.0070.
Hanson, L. C., Armstrong, T. D., Green, M. A., Hayes, M., Peacock, S., Elliot-Bynum, S., Goldmon, M. V., Corbie-Smith, G., & Earp, J. A. (2013). Circles of care: Development and initial evaluation of a peer support model for African Americans with advanced cancer. Health Education & Behavior, 40(5), 536-543. doi:10.1177/1090198112461252.
Volandes, A. E., Ariza, M., Abbo, E. D., & Paasche-Orlow, M. (2008). Overcoming educational barriers for advance care planning in Latinos with video images. Journal of Palliative Medicine, 11(5), 700-706.
Keisha Carden is a fourth year graduate student in Clinical Geropsychology at The University of Alabama working under the mentorship of Dr. Rebecca S. Allen. Her primary clinical and research interests include: family caregiving for older adults (with and without cognitive impairment/Alzheimer’s disease and dementia); resilience; existential/death anxiety; childhood trauma; intergenerational relationships; and outcomes and treatment mechanisms of non-pharmacological interventions that incorporate aspects of positive psychology and meaning-making.