This post builds on the research article “Author(iz)ing Death: Medical Aid-in-Dying and the Morality of Suicide,” which was published in the February 2019 issue of the Society’s peer-reviewed journal, Cultural Anthropology.
This post is meant to be read alongside Anita Hannig’s article Author(iz)ing Death: Medical Aid-in-Dying and the Morality of Suicide published in the February 2019 issue of Cultural Anthropology. We open with a brief interview with Hannig exploring how religion, ethics, and gender dynamics intersect with issues of medical aid-in-dying in the United States. We follow this with a discussion about pedagogical approaches to teaching death and dying in an undergraduate course and conclude with a list of supplementary material for further learning and teaching.
Hannig teaches two courses on death and dying at Brandeis University, one of which is detailed in a recent Sapiens article. Our ultimate goal in this post, however, is to give anthropology instructors some ideas about how to teach death and dying as one part of a larger anthropology course. Though death and dying are key areas of study in our field, many of us avoid the topic due to its sensitive nature; teaching death and dying to undergraduate students requires teachers to become comfortable with discomfort. Hannig suggests that it is worth creating a space where students can talk about death and dying, partly because it may lead students to become less fearful of dealing with death and bereavement.
Whitney Russell and Sarah O'Sullivan: While you don’t frame your main argument in “Author(iz)ing Death” as an opposition between religion and the state, you do mention that religion complicates biopolitical processes through the redemptive potential of bodily suffering. Can you elaborate more on how religion impacts patients’ ability to access medically assisted death?
Anita Hannig: Religion actually plays a big role when it comes to patients’ ability to access a medically assisted death. One of the largest healthcare providers in Oregon is Providence, a Catholic health system that runs multiple hospitals and hospice services in the state. Providence has a strict policy against participating in Oregon’s Death with Dignity Act. Physicians who work for Providence are barred from being involved in the law, which means they can’t prescribe life-ending medication to qualified patients, or even serve as consulting physicians. In some cases I encountered, a Providence physician might even refuse to enter a patient’s request for assisted dying into their medical chart, which means the patient’s mandated fifteen-day waiting period after their first request cannot begin. Patients must find external doctors outside the Providence system to evaluate their request, a challenge in those regions where Providence runs the only hospital in town. Despite official Providence policy, however, individual nurses and social workers are often quite sympathetic to terminally ill patients’ desire to pursue an assisted death, and they will try to find ways to help them. For instance, they might contact volunteer organizations like End of Life Choices Oregon for assistance, sometimes stepping off the premises to place the call.
WR & SO: Can you tell us how (or if) gender figured into your informants' decision-making regarding medical aid-in-dying?
AH: If you look at the latest state data from Oregon on assisted dying, in over twenty years the gender distribution of patients who used the law remains more or less even (52.3 percent were men, 47.7 percent were women), with a slight overrepresentation of men. Some of my contacts have speculated that this small discrepancy might have to do with the fact that men are overall less willing to suffer some of the indignities that can come with a terminal illness: loss of bladder control, inability to go to the bathroom by yourself, being fed by others. For many male patients, having to wear a diaper becomes their absolute last straw, so they are less willing to let things take their course. My contacts who have raised this issue told me that women tend to be more accustomed to these indignities because they have been exposed to uncontrolled bodily fluids all their life through menstruation and childbirth. I am not sure if this explanation accounts for the slightly uneven data on gender, but I think it’s certainly one interpretation.
WR & SO: While right-to-die activists argue that medical aid-in-dying is a fundamental right that should be afforded to people with terminal illnesses, do people seeking a medically assisted death experience this act as a “right”? Do patients discuss the politics shaping their decisions?
AH: Yes, I would say that those who use the law see it as their “right,” and they often feel passionate about defending it as such and advocating for the adoption of assisted dying laws by other states (which, in some cases, was their motivation for participating in my project). If you look at a map of which states have legalized assisted dying, you will notice that it remains limited to those that tend to vote Democratic—Oregon, Washington, California, Vermont, Colorado, Hawaii, and the District of Columbia. Montana is the only exception, and observers usually point to the state’s libertarian ethos to explain its outlier status. In fact, aid-in-dying was really only decriminalized there in the wake of a 2009 court case brought by a terminally ill patient who sued the state for his right to die (Baxter vs. Montana). Until today, the practice has not been positively codified into law. Physicians just won’t face prosecution if they prescribe lethal medication to a fatally ill patient. Still, assisted dying is an issue that transcends party lines. When it comes to their own death, people’s political leanings aren’t a reliable indicator of what they will choose. For example, I have accompanied several patients who were Republican and who wanted to make use of this option for themselves.
WR & SO: Relatedly, can you expand on the significance of patients being required to self-administer the medication rather than receiving it by a physician or nurse (as is the case in Canada, which you mention in your article)?
AH: The issue of self-administration is really tricky: it excludes a lot of qualified patients who have lost control over their hands (such as those with ALS) or who have lost the ability to swallow. On the one hand, the fact that patients in the United States have to self-administer their own deaths has been widely cast as an important safeguard meant to ensure the voluntary nature of their final act. On the other hand, the requirement for self-administration has had many unforeseen effects. Afraid they might miss the window of being able to swallow the medication or push the plunger on their feeding tube, patients sometimes end their lives sooner than they might otherwise—or they miss their ability to do so entirely. Similarly, doctors who prescribe life-ending drugs have had to devise protocols for medications that are guaranteed to work through the gastric tract, which is far more complicated than being able to use the circulatory system, sometimes leading to protracted deaths. I am in the process of developing an article on this paradox.
WR & SO: As a teacher who teaches undergraduate students about death and dying, we were hoping you could tell us a little bit about how you approach medical aid-in-dying within a classroom.
AH: I try to teach the class in a balanced way: I assign articles from both sides of the debate, invite guest speakers who oppose and those who are in favor of assisted dying laws, and encourage spirited debates among students. At the beginning of the semester, I have students sign an agreement that they will try to remain open to all possible viewpoints as this class unfolds and be prepared to have their minds completely changed in the course of the class. In addition, I usually frame aid-in-dying as a policy issue at the intersection of medicine and law. Initially, as a class, we spend a lot of time reading and dissecting the letter of the law, situating assisted dying in the proper historical context, looking at current proposed bills elsewhere in the United States, comparing assisted dying laws to those of other countries, and identifying gaps in assisted dying laws.
WR & SO: Are there any difficult student responses that teachers may have to prepare for when discussing death, dying, or medical aid-in-dying?
AH: Definitely. I think it’s important to have students self-select a class like this. For the senior capstone seminar, students can choose between my section and at least three others on different topics unrelated to death and dying, so they would never be forced to take my class. At the beginning of the class, I spend an entire period preparing students for what lies ahead so they understand that our discussions about death and dying aren’t confined to theoretical or academic realms. During some years, some students have had to contend with painful losses while taking my class. But many said that the class and a similar one I teach on the Anthropology of Death and Dying actually helped them feel less blindsided by these losses or helped them process and discuss death in ways they might not have been able to otherwise.
WR & SO: How might you recommend teachers get students talking about death in a general introduction course, such as a first or second year introduction to medical or cultural anthropology?
AH: I think introducing the topic through a concrete case study of, say, Brittany Maynard’s death (the young Californian who moved to Oregon to use the state’s Death with Dignity Act) would work, and then giving students a quick glimpse into what these laws do and who they are for by reading some assisted dying bills. I sometimes assign some of Atul Gawande's work on death and dying, like his article "Letting Go" (2010) published in The New Yorker, which students find imminently accessible.
As instructors, we consider conversations surrounding medical aid-in-dying to be a helpful way to introduce students to issues and inquiries around death and dying within an introductory anthropology course. Using resources and pedagogical practices recommended by Hannig, we suggest assigning Atul Gawande (2010) and excerpts from Oregon's Dying with Dignity Act as course readings and present Brittany Maynard's story as a lecture in class. This should follow with a group discussion about how the law impacts what it means to choose how one dies. Approaching medical aid-in-dying in this way, students can unpack the ways such policies impact individual life experiences and reflect on their own values and assumptions.
Other accessible sources to consider include the following:
Aviv, Rachel. 2015 "Letter from Belgium: The Death Treatment." New Yorker, June 22, 56–65.
Brooke, Jarvis. 2016. "When I Die: An End-of-Life Doctor Faces His Own End." Harper’s Magazine, January.
Marantz Henig, Robin. 2013. "A Life-or-Death Situation." New York Times Magazine, July 17.
Porter, Catherine. 2017. "At His Own Wake, Celebrating Life and the Gift of Death." New York Times, May 25.
How to Die in Oregon. 2011. DVD. Directed by Peter D. Richardson.
Oregon Health Authority, which keeps all the statistics on assisted dying.
Resources from the Death with Dignity National Center in Oregon and End of Life Choices Oregon.
Gawande, Atul. 2010. "Letting Go: What Should Medicine Do When It Can't Save Your Life?" New Yorker, July 26.
Hannig, Anita. 2017. "Death and Dying 101." Sapiens, October 3.
Public Health Division, Center for Health Statistics. Oregon Death with Dignity Act: 2018. Data Summary. Oregon: U.S., 2019.