On February 26th, clinical ethicist Dr. Sean Hillman visited the Munk School of Global Affairs for a talk sponsored by the Centre for South Asian Studies and supported by the Robert H. N. Ho Family Foundation Centre for Buddhist Studies. The topic of the talk was focused on Hillman’s recently defended doctoral ethnography. A medical anthropologist and textualist, Sean completed his doctorate in religion and the collaborative programs of bioethics and South Asian studies at U of T. Field-work for the study lasted six months, and he has spent five years living, studying, and researching in India with a specific focus on Indic religious traditions.
His work investigated end-of-life care in contemporary India through the lens of religious studies, bioethics, and law. A dynamic speaker, Hillman engaged the diverse audience in attendance, addressing the crowd of undergraduates, doctoral candidates, and professionals in a personal way by beginning with a land acknowledgement. As well he thanked his former Supervisor Prof. Frances Garrett and his wife and five-month-old daughter, who were all present for the event. He explained that this talk at the Munk school was the first-ever presentation of his 7-year long doctoral project in full, rather than just select chapters. He went on to explain that having been a professional in the bioethics field for years, his doctoral work wasn’t just meant to be about people’s experiences in dedicated end-of-life care settings, such as palliative care, but rather to examine various contexts and experiences of end-of-life care. This includes emergency and critical care situations, with particular attention to decision-making. Hillman noted that the need for this research stems in part from a history of the imposition of dominant Western methods and understanding of death and end-of-life care. Thus, in his work Hillman aimed to advocate for culturally safe end-of-life care provided to South Asian religious adherents in South Asia and beyond.
From the outset, Hillman emphasized that the informants he talked to while conducting fieldwork in India were the driving force behind the chapters that he was going to present to the room that day. Although having several questions when going into the study, in the course of his field-work and interaction with informants these questions became redefined and expanded in their scope. One such question was: how does medical decision-making work among adherents in Indian hospital settings, especially in end-of-life contexts? Rather than addressing the “how,” he noted that his informants had more to say about who did decision-making. Another question he noted when entering his study was: how does religion impact medical decision-making, especially at the end of life, if at all? In this question, he primarily addressed a gap in bioethical research relating to the ancient Indic religious traditions of Buddhism, Hinduism and Jainism. According to Hillman, this was especially true of bioethical study that ignored non-religious Indic traditions, as well as a lack of bioethical material on Jain end-of-life fasting, against which there is legal opposition in India.
While his doctoral study broadly discussed end-of-life-care practices, central themes that Hillman shared with the room included the disclosure of bad news and sharing of sensitive medical information, and ritual death by fasting, specifically the experience of Jain end-of-life ritual fasting and immobilization. For the first theme, the speaker played the trailer to the acclaimed 2019 film “The Farewell” in an attempt to convey varying approaches towards the transfer of sensitive information in diverse cultures. In the trailer, an Asian-American protagonist struggles with her Chinese family’s decision not to tell her grandma, who is dying of cancer, about her terminal condition. Hillman explained that in his own research, he encountered a Christian nun and hospice nurse in Kerala who explained that often families bring people to hospices without the client knowing they are being admitted to a hospice. There, the idea of end-of-life and more imminent passing is slowly introduced to them. There was likewise an acknowledgement among healthcare providers that belong to various South Asian groups that there are subtle cultural cues that slowly introduce the idea that a loved one is dying rather than “dropping the bomb” all at once. In terms of recommendations around the delivery of sensitive news, one note that Hillman made was to establish a patient-physician relationship in which the patient is asked well in advance what type of news they or loved ones would like to hear so that it relieves the substitute decision-makers of having to decide on delivering hard news or not, and likewise avoids undue stress to the patient and their family.
The second chapter that Hillman detailed was his work on ritual death, specifically the intersections of religion, medicine and the law, comparing Jain “sallekhana” and Buddhist “tukdam”. He went into great detail about the Jain tradition of ritual death, which has received much disapproval from critics and is even facing legal actions against it. Hillman explained that Jain fasting involves a vow to voluntarily fast before death that is typically considered binding. This vow is taken by candidates for a number of reasons surrounding end-of-life care including terminal illness, intractable pain, and even old age or calamity. Contemporary Jains, according to Hillman, say that embracing death is not the concept, but rather, the purpose of the religious tradition is to mentally prepare yourself to peacefully leave the Earth, and as such, to make death more mentally comfortable. The religious association for contemporary Jains is that in the state of immobility and fasting leading up to death, one is not harming anything and halts all karma. The Buddhist practice of end-of-life fasting has received no reception from critics or the law in India, and has lacked the general negativity as seen towards the Jain practice. As Hillman explains, such differential treatment by the law has to do with the difficulty to assert with certainty that Jain fasting is done voluntarily, without coercion, and by a person who has the capacity to give informed consent to take the religiously binding vow. The non-rescindability of the vow was of concern to him, but there are Jain sources that allow for ceasing the fast if one becomes ill specifically as a result of the fast. According to Hillman, bioethically speaking, as with medically-assisted dying a person should have the option to choose to back out at any time.
In wrapping up his talk, Hillman recommended implementing measures for culturally sensitive healthcare during end-of-life situations that still account for basic principles of bioethics, including voluntariness, capacity, and informed consent. He noted that non-physician healthcare professionals or trained members of religious communities could have a role to play in this – ultimately, the delivery of culturally holistic and safe end-of-life care is a concerted effort that can thrive with the input of religion, health care providers, and principles of ethics that empower individuals to make free choices about their end-of-life needs.
Anushka Kurian is a fourth-year student majoring in International Relations and Ethics, Society and Law. She is an Event Reporter and Contributor for Synergy: The Journal of Contemporary Asian Studies, South Asia section.
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