Terminally Ill Patients Don’t Use Aid-In-Dying Laws To Relieve Pain

by Michel Dupagne, in response to an article written by Liz Sabo:
http://khn.org/news/terminally-ill-patients-dont-use-aid-in-dying-laws-to-relieve-pain/

Dear Ms. Szabo:

In your piece, you concluded that “Yet the latest research shows that terminally ill patients who seek out aid-in-dying aren’t primarily concerned about pain.” To make this claim, you presumably (I was not able to find the cite in the article) relied on the 2016 JAMA study by Dr. Emanuel and his colleagues (JAMA. 2016;316(1):79-90. doi:10.1001/jama.2016.8499). I am reproducing the primary table of Dr. Emanuel et al’s study below and will also cc him with my comments. As a PAS and euthanasia advocate, I strongly disagree with your characterization that ” Pain [Is] Not A Big Priority Among The Dying.” At best, it is an oversimplification; at worst, it is an erroneous conclusion and a disservice to readers. Because your article was republished in “The Miami Herald,” my local newspaper, I must take issue with it, hopefully, in a constructive fashion.
chart
First, pain and suffering are multidimensional constructs that involve more than a rating. At least one recent qualitative study (J Gen Intern Med. 2005 May; 20(5): 485) links pain to other constructs, such as autonomy and frustration. Mental anguish and suffering are often underreported in many end-of-life situations and studies, with the exception of Belgian studies because euthanasia is permissible for “constant and unbearable mental suffering” in Belgium (http://www.ethical-perspectives.be/viewpic.php?TABLE=EP&ID=59).
chart

Second, the end-of-life concerns in the table above are reported by attending physicians and do NOT emanate directly from patients. This distinction is critically important for several reasons. First, memory or interpretation error can be a factor on the part of the physician making that assessment. It is not uncommon that physicians and nurses underestimate pain levels. Second, for the follow-up form completed by physicians in Oregon, seven concerns are offered (see below). There is no “other” category. The authors of this form assume that the categories are exhaustive, but is it the case? Third, I would argue that there is a social desirability interest on the part of the attending physicians in Oregon to underreport “the inadequate pain control at end of life.” It would be naive to discount the possible public uproar that could occur should the estimated percentage for the pain category be high. It would adversely affect pain management approaches in the United States, which have been under criticism for decades. So overall, as a social scientist, I do not think these end-of-life concerns data are valid, especially when they conflict with other studies reported in the same table (see below the original table of the Belgian (Flemish) study, JAMA Internal Medicine, October 2015).

chart

chart

Finally, the downplaying of plain and suffering among terminally ill and seriously sick people is not supported in the literature. In fact, pain is a major concern for “seriously sick patients” (e.g., JAMA, November 15, 2000—Vol 284, No. 19, 2476) and for “pursuing a hastened death” (e.g., J Gen Intern Med. 2005 May; 20(5): 485). See tables below.

In sum, I am disappointed by your article because I feel that your conclusion does not match reality. I hope that you will revisit this issue. I also hope that Dr. Emanuel and his colleagues will replicate their 2000 JAMA study (JAMA. 2000;284(19):2460-2468. doi:10.1001/jama.284.19.2460) and add some items to measure more validly end-of-life concerns, which are of paramount importance for many patients.

Thank you!

Best regards,

Michel Dupagne, Ph.D., M.B.A.
Professor
School of Communication
University of Miami

chart

chart