University of Oklahoma assistant professor and medical anthropologist Elyse Ona Singer, Ph.D., has received a grant from the National Science Foundation to better understand the cultural and bioethical dimensions of death and dying. The project grew out of a curiosity that is at once academic and personal.
"Someone very close to me has had chronic health issues for several years now, and the end of life, death, dying and the caregiving responsibilities that entails have been on my mind in a personal way for a long time," Singer said.
Singer and postdoctoral researcher Alicia Ordóñez Vázquez are conducting an ethnographic study across two major public hospitals' palliative care wards in Mexico City. The two-year project is jointly funded by a $238,583 grant from the Established Program to Stimulate Competitive Research, or EPSCoR, and Cultural Anthropology programs of the National Science Foundation.
Palliative care describes a holistic approach that aims to improve the quality of life for patients facing serious illness, with a focus on managing symptoms such as pain and the psychological and emotional stressors of being unwell.
While palliative care remains limited across Mexico, in 2008, Mexico City passed the Ley de Voluntad Anticipada, or Advance Directive Law. Today, Mexico City residents have the right to passive euthanasia - the right to refuse or withdraw life-sustaining treatment. They can also register their end-of-life wishes by filing advance directives at a hospital or public notary, and comprehensive palliative care services have been made available to the terminally ill for the first time through public health institutions.
Singer and Ordóñez Vázquez are working with the two palliative care wards to ask questions in real-time of doctors, health care professionals and patients who agree to participate.
At the first hospital site, which serves cancer patients, Singer plans to collect 40 case studies of terminally ill patients together with their primary family caretaker. The case studies include follow-up interviews with the family caretaker and palliative care physician to understand the processes of bereavement and the degree to which they feel that the dignity of the deceased was preserved.
"The objective of the study is to understand how everyday people - the terminally ill, their caretakers and the palliative care professionals - understand and strive to accomplish a dignified death," Singer said. "Also, to better understand the legal, bureaucratic, bioethical, economic and other obstacles that get in the way of that. My job as an anthropologist is to put aside my own conceptions of what a dignified death might look like and understand what it means locally to the people I'm getting to know."
Singer says the cultural significance of death and the illegality of assisted dying in Mexico provide a unique ethnographic context in which to explore this topic.
"We see stereotypes about how people in Mexico think about death … celebrate holidays like the Day of the Dead," she said. "I want to understand in more detail and nuance what ordinary people make of death and dying in a context where there's so much cultural elaboration around death. Currently, all forms of assisted dying or any active euthanasia are illegal or not yet legal. The legal context for assuring dignified death, where dying individuals have autonomy and choice about when death happens, where death happens, whether they have access to pain medications and who else is present, is arguably trickier in the Mexican context because of the fewer legal options that are available to people."
Singer hopes the findings from this study can provide insights for the clinicians, patients and caregivers that may enhance palliative care practices.
"Whether improving communication between clinicians, patients and caregivers or helping to bring attention to things that patients and their families are telling us about how the care might be improved, ideally, these findings could translate into smoother protocols or an enhancement of care in some way," Singer said.
Singer also plans to publish a range of articles and, ultimately, a book on the study's findings.
Singer is an assistant professor in the Department of Anthropology, Dodge Family College of Arts and Sciences at the University of Oklahoma. Her research focuses on controversial topics. Her first book, Lawful Sins: Abortion Rights and Reproductive Governance in Mexico
