Money, Family, End of Life Treatment, and Being a Burden

BioEdge.org, a bioethics news source, released an article about physician assisted suicide (PAS) about a week ago. Oregon is one of the few states that have legalized PAS. However, according to the 2016 Report on Oregon’s Death with Dignity Act, about 50% of patients who ended their lives via PAS, said that they did because they were afraid of “being a burden” to their families and friends. It is likely that if you live in the United States, you aren’t living in a state where PAS is legalized. However, the concept of being a burden is not unique to PAS and euthanasia. Personally, I constantly worry about being a burden. I hate asking for help. Outside of my personal insecurities, there are plenty of studies and testimonials about the chronically ill, terminally ill, and even those in need of basic emotional support, worrying about being a burden.

Naturally, this made me think of the cultural crossover of being a burden during illness as a Black individual. I would also stipulate that there is a heightened risk of being a burden in Black communities due to family dynamics. African-Americans and Caribbean Blacks are more inclined to have fictive kin (familial-like relationships created among individuals that are not related to each other via blood, marriage, or adoption) than Whites. They are also more inclined to be involved in a “congregation network” (referring to religious spaces) and receive emotional support from the network compared to Whites. Therefore, this dynamic could imply that there are more individuals physically involved (via hospital or home visits and physical care-taking) in a Black person’s physical healing process and emotional support during illness. This could create a sense of feeling like a burden on an entire community versus one’s immediate family. It could also create a sense of spiritual abandonment or a sense of feeling like a burden on one’s deity.

Financially, there are challenges as well. A 2016 study done by a team at the University of Michigan found that costs for the last six months of life for Blacks are $7,100 more expensive to the Medicare system compared to the last six months of life for Whites – after adjusting for socioeconomic, geographic, and health differences. Research has also indicated that some people of color in general are afraid of using hospice care because of the potential costs. However, this is not to imply that all Blacks are impoverished (an obvious statement, but one worth making). There is still a clear racial, wealth gap that exists due to historical precedent that creates issues in paying for healthcare. In the CNN article, Why the Racial Wealth Gap Won’t Go Away, Tanzina Vega states that “while 44% of all Americans have less than three months worth of income saved, 67% of Blacks and 71% of Hispanics lack adequate savings, compared to 34.7% of Whites.”

So where does this leave Black people in the emotional and literal cost-benefit analysis of PAS, terminal illness, and chronic illness? Is there hope? I cannot promise that things will become cheaper, but I do believe that dialogue about these topics can make a difference because “closed mouths don’t get fed.” I also believe that preparation for emergencies by asking family members about end of life wishes and completing advance directives also creates an efficiency that could potentially counteract the initial financial blow (the University of Michigan study stipulated this as well). Although it can be challenging to have many people emotionally and physically supporting an individual throughout their illness and even on their death bed (specifically referring to Black family dynamics as elaborated upon above), this could be a very positive effect as well. Having a arsenal of support, prayers, and kind thoughts can make a tremendous difference in treatment effectiveness and recovery. One does not have to view themselves as a burden, but as priceless to a point of sacrifice. And that is a narrative that can be promoted.

Thanks for reading,

The Neighborhood Bioethicist

 

HELPFUL LINKS

BioEdge Article – https://www.bioedge.org/bioethics/is-fear-of-being-a-burden-a-good-reason-for-assisted-suicide/12425

 

HOW TO FOLLOW THIS BLOG

  • Click the Follow button in the bottom-right corner of your screen.
  • Type in your email.
  • Congratulations – now you will get an email every time there is a new post!

HOW TO SHARE TO SOCIAL MEDIA

  • Scroll to the bottom of this post.
  • Click the corresponding social media button (Facebook, Twitter, etc.).
  • Congratulations – now your friends can see whats happening on The Neighborhood Bioethicist!

 

SOURCES

Allen, Katherine R. “Fictive Kin.” In The Encyclopedia of Adulthood and Aging. John Wiley & Sons, Inc., 2015. doi:10.1002/9781118521373.wbeaa292.
“End of Life and Socioeconomic Status.” Http://Www.apa.org. Accessed September 18, 2017. http://www.apa.org/pi/ses/resources/publications/end-life.aspx.
Gardner, Daniel S., and Betty J. Kramer. “End-of-Life Concerns and Care Preferences: Congruence among Terminally Ill Elders and Their Family Caregivers.” OMEGA – Journal of Death and Dying 60, no. 3 (May 1, 2010): 273–97. doi:10.2190/OM.60.3.e.
Loggers, Elizabeth Trice, and Holly G. Prigerson. “The End-of-Life Experience of Patients with Rare Cancers and Their Caregivers.” Rare Tumors 6, no. 1 (March 24, 2014). http://www.pagepress.org/journals/index.php/rt/article/view/5281.
Rawal, Grisha. “Caregiver Burden and Chronic Illness among Aging Adults: An Analysis of the Factors Moderating Levels of Caregiver Burden/Stress in Caregivers.” M.A., University of Central Oklahoma, 2014. https://search-proquest-com.ezproxy.bu.edu/docview/1553840538/abstract/F9FE6B574CAD46B1PQ/1.
Taylor, Robert Joseph, Linda M. Chatters, Amanda Toler Woodward, and Edna Brown. “Racial and Ethnic Differences in Extended Family, Friendship, Fictive Kin and Congregational Informal Support Networks.” Family Relations 62, no. 4 (October 1, 2013): 609–24. doi:10.1111/fare.12030.
“The End of Life Care Costs Are Higher for People of Color.” Accessed September 18, 2017. http://labblog.uofmhealth.org/industry-dx/why-does-dying-cost-more-for-people-of-color.
Vega, Tanzina. “Why the Racial Wealth Gap Won’t Go Away.” CNNMoney, January 25, 2016. http://money.cnn.com/2016/01/25/news/economy/racial-wealth-gap/index.html.
“Why Does Dying Cost More for People of Color? New Study Takes a Deeper Look: Deep Dive Looks for Causes of Disparities in Medicare Costs for End-of-Life Care.” ScienceDaily. Accessed September 18, 2017. https://www.sciencedaily.com/releases/2016/09/160901124837.htm.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s