Tag Archives: palliative care

Finding Meaning in Life and in Death: A Call to Culturally Competent Action

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This is the second of three blog posts on grappling with end-of-life issues. Posts will go up for the next two Fridays. Subscribe to our Psychology Benefits Society blog to stay updated.

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:

  1. human beings consist of body, mind, and spirit
  2. life has meaning under all circumstances, even the most miserable
  3. people have a will to meaning
  4. people have freedom under all circumstances to activate the will to find meaning
  5. life has a demanding quality to which people must respond if decisions are to be meaningful
  6. 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.


Promising beginnings

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:

  1. explores factors contributing to differences and disparities in end-of-life and palliative care
  2. evaluates the effectiveness of current end-of-life interventions among diverse groups
  3. 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.

Image source: Photo by Jake Thacker on Unsplash

Filed under: Aging Tagged: end of life, existential, gender, intersectionality, meaning, minority, palliative care, sexuality

A Good Death is an Important Part of a Good Life


This is the first of three blog posts on grappling with end-of-life issues. Posts will go up for the next three Fridays. Subscribe to our Psychology Benefits Society blog to stay updated.

By Amy Albright (Clinical Geropsychology Doctoral Student, University of Alabama)

We spend a lot of time talking about quality of life, but, increasingly, people around the world are talking about quality of death. Facing the end of life is hard for everyone involved, and many worry about the pain and loss of dignity associated with dying.1 In some areas of the world, individuals may choose legalized medical aid in dying, allowing them to control the time and place of their own death. This assistance allows patients to peacefully and painlessly end their lives through prescribed medication, which is often referred to as “assisted dying” or “death with dignity.” The majority of patients who choose these options are receiving hospice care,2 and many choose to die peacefully at home.3

Within the United States, residents of California, Colorado, Montana, Oregon, Vermont, Washington, and Washington D.C. may seek assisted dying.4 Currently, all U.S. states that allow assisted dying require that the patient is at least 18 years old, has a terminal illness, and has the legal capacity to make medical decisions.5 Psychologists don’t take a stand on this issue one way or the other; instead, they work with individuals to identify their own values and make their own decisions during this difficult time.6 There is a great deal of controversy surrounding  assisted dying, as the idea of ending one’s own life may be uncomfortable within certain cultures and religions.7 This is a choice that must be made at an individual level, and many who explore this option do not choose to hasten their own death. As of 2015, approximately 64% of medications prescribed under Oregon’s Death with Dignity Act were used.3

There is a great deal of variation in assisted dying laws,5 which may be due to how these laws develop. Brittany Maynard, a resident of California, was 29 when she was diagnosed with terminal cancer.8 While she wanted to choose death with dignity, this was not an option in California at the time, and she and her husband moved to Oregon so she could choose a peaceful death on her own terms. Ms. Maynard and her family advocated for California to pass a death with dignity law, and the California End of Life Option Act took effect in June of 2016.9 Due in large part to Ms. Maynard’s efforts, the idea of choosing assisted dying at the end of life is something that many Americans are now aware of. While hastening death is not something that most people will choose, having these tough conversations helps patients and their families become more aware of the services and options available to them at the end of life, allowing them to make the best decision possible.10

Choosing to pursue assisted dying is an incredibly difficult decision for all involved, and judging quality of death is very personal.11 While losing a loved one is never easy, family members of those who seek assisted dying have noted that their relative appeared prepared for death, allowing goodbyes to be said.1 Death is an inevitable part of life, and death with assisted dying  laws allow patients and their families some measure of control over the time and manner of death. Simply having the option to influence quality of death may be enough for some patients, and not all who consider assisted dying laws will choose to hasten death. Ultimately, there are no universal standards about the decision to pursue assisted dying, and this should always remain a matter of personal choice.6



  1. Smith, K. A., Goy, E. R., Harvath, T. A., & Ganzini, L. (2011). Quality of death and dying in patients who request physician-assisted death. Journal of Palliative Medicine, 14(4), 445-450.
  2. Campbell, C. S., & Black, M. A. (2014). Dignity, death, and dilemmas: A study of Washington hospices and physician-assisted death. Journal of Pain and Symptom Management, 47(1), 137-153.
  3. Oregon Public Health Division. (2016). Oregon Death with Dignity Act: 2015 Data Summary. Retrieved from http://www.worldrtd.net/sites/default/files/newsfiles/Oregon%20report%202015.pdf.
  4.  Death with Dignity National Center. (2017). Death with Dignity Legislation. Retrieved from https://www.deathwithdignity.org/faqs/#laws.
  5. Emanuel, E. J., Onwuteaka-Philipsen, B. D., Urwin, J. W., & Cohen, J. (2016). Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. JAMA, 316(1), 79-90.
  6. American Psychological Association. (2017). Resolution on Assisted Dying and Justification. Retrieved from http://www.apa.org/about/policy/assisted-dying-resolution.aspx.
  7. Hendry, M., Pasterfield, D., Lewis, R., Carter, B., Hodgson, D., & Wilkinson, C. (2013). Why do we want the right to die? A systematic review of the international literature on the views of patients, carers, and the public on assisted dying. Palliative Medicine, 27(1), 13-26.
  8. Maynard, B. (2014, November 2). My right to death with dignity at 29. CNN. Retrieved from http://www.cnn.com/2014/10/07/opinion/maynard-assisted-suicide-cancer-dignity/index.html.
  9. Coalition for Compassionate Care in California. (2017). End of Life Option Act. Retrieved from http://coalitionccc.org/tools-resources/end-of-life-option-act/.
  10. Balaban, R. B (2000). A physician’s guide to talking about end-of-life care. Journal of General Internal Medicine, 15(3), 195-200.
  11. Meier, E. A., Gallegos, J. V., Thomas, L. P., Depp, C. A., Irwin, S. A., & Jeste, D. V. (2016). Defining a good death (successful dying): Literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry, 24(4), 261-271.



Amy Albright is a doctoral student in the Clinical Geropsychology program at the University of Alabama. Her research focuses on health literacy and the end of life, and she has a particular interest in factors that influence seeking medical assistance in dying. This includes both patient and provider attitudes towards physician-assisted death, as well as health and palliative care literacy.

Filed under: Aging Tagged: aging, assisted dying, death with dignity, end of life, hospice care, palliative care