Prospectus

nl en

Anthropological Perspectives on Dying and End-of-Life Care

Course 2018-2019

Admission Requirements

This course is an (extracurricular) Honours Class: an honours elective in the Honours College programme. There are limited spots available for non-honours students. Admission will be based on motivation.

Description

How do social and cultural perspectives on a “good death” vary around the world? In what different ways do caregivers and patients prepare for dying? How do we assess bio-ethical and religious debates on issues of brain death, organ donation, palliative care and euthanasia? How are new biomedical possibilities around end-of-life care and dying discussed, applied or rejected in different cultural contexts?

In this course we will apply perspectives from cultural anthropology and social medicine to study these and other questions surrounding end-of-life care and dying. We will examine how modern technologies, such as life-sustaining systems and organ donation, affect notions of a good death and the moral personhood of the dying, and how they do so in relation to culture and religion. We will look at a range of values and social relations that shape debates on dying globally and locally, including issues of illness disclosure, patient autonomy, and hospice and family care.

The course invites students to develop their own thoughts on highly socially relevant themes and to critically assess taken for granted notions of death and dying. It encourages students to engage in cutting-edge ethical debates. It offers students the opportunity to develop qualitative social scientific methodological skills through an interview exercise.

This is a reading-heavy course. Students will be required to read the assigned texts and write response notes prior to each session. The majority of sessions will have a seminar structure in which the readings will be collectively discussed in relation to the questions and comments raised in the response notes. Active participation in the discussions is encouraged. Tentatively, the course will include a film screening, guest lecture and excursion. During the final session students will discuss their interview reports. The final assessment is a paper on a course-related topic that engages a selection of course readings.

Course Objectives

The course will help you to:

  • Understand core medical anthropological discussions on dying and end-of-life care
  • Increase interview skills and qualitatively analyse an interview in relation to existing academic literature
  • Challenge taken for granted positions on end-of-life care by assessing their socio-cultural dimensions
  • Develop critical thinking and writing skills that allow you to engage in social scientific discussions
  • Advance discussion skills by active participation in debates during the sessions.

Timetable

Lectures/seminars/excursion: Friday 15.00 – 17.00hrs,

February 1, 8, 15, 22.
March 1, 8, 22, 29

Location

Faculty of Social Sciences (Pieter de La Court Building) Leiden

Programme

Concept programme topics:

Instructor dr. Annemarie Samuels

  • Week 1 (February 1): Introduction – Culture, biomedicine and the end of life.
  • Week 2 (February 8): Modern dying: what is a good death?
  • Week 3 (February 15): Brain death
  • Week 4 (February 22): Palliative care and religious perspectives on the end of life
  • Week 5 (March 1): Hospice care
  • Week 6 (March 8): Excursion to Hospice Issoria (Burgravenlaan 11, Leiden)
  • Week 7 (March 15): No class
  • Week 8 (March 22): Physician-assisted dying, politics of living and dying
  • Week 9 (March 29): Anticipating dying
    Final Paper due April 12

Course Load

This course is worth 5 EC, which means the total course load equals 140 hours.

  • Lectures: 1 introductory lecture 2 hours, 1 guest lecture 2 hours
  • Seminars: 6 seminars of 2 hours
  • Excursion: 1 excursion of 2 hours
  • Literature reading & practical work: 9 hours p/week (8 weeks needing preparation) = 64 hours
  • Assignments & final essay: interview exercise + report (16 hours) & final paper (34 hours)

Assessment Method

  • 20% Participation assessed continually through active participation in seminar and structured activities
  • 25% (5% each) a minimum of 5 response notes of 200-400 words (questions, comments, impressions related to the session’s readings). Response notes should be submitted through blackboard at least 12 hours before the start of the session. Submitting more than 5 response notes is allowed (lowest score(s) will be dropped).
  • 25% Interview report (1500 – 2000 words), submission deadline 25 March 2019.
  • 30% Final paper (3000 words), submission deadline 5 April 2019.

Please note: Attendance is mandatory for all sessions.

Blackboard and uSis

Blackboard will be used in this course. Students can register for the Blackboard site two weeks prior to the start of the course.

Please note: students are not required to register through uSis for the Honours Classes. Your registration will be done centrally.

Reading List

Tentative reading list, subject to change! Please check the updated list in January 2019

Broom, Alex, Emma Kirby, Katherine Kenny, John MacArtney, and Phillip Good 2016. “Moral Ambivalence and Informal Care for the Dying.” The Sociological Review 64: 987-1004.

Flaherty, Devin 2018 “Between Living Well and Dying Well: Existential Ambivalences and Keeping Promises Alive.” Death Studies 42(5): 314-321.

Green, James W. 2012 Beyond the Good Death: The Anthropology of Modern Dying. University of Pennsylvania Press. (Selections TBA)

Kaufman, Sharon 2005. … And a Time to Die: How American Hospitals Shape the End of Life. Chicago: University of Chicago Press.(Selections TBA)

Krakauer, Eric L. 2007 “ ‘To Be Freed from the Infirmity of (the ) Age’: Subjectivity, Life-Sustaining Treatment, and Palliative Medicine.” In: Subjectivity: Ethnographic Investigations, edited by Joao Biehl, Byron Good and Arthur Kleinman, pp. 381-396.

Livingston, Julie 2012 Chapter 6 “After ARVs, During Cancer, Before Death” in Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham: Duke University Press.

Lemos Dekker, Natashe 2018. “Moral Frames for Lives Worth Living: Managing the End of Life with Dementia.” Death Studies 42(5): 322-328

Lock, Margaret. 2002. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press. (selections TBA)

Long, Susan Orpett 2004 Cultural Scripts for a Good Death in Japan and the United States: Similarities and Differences. Social Science and Medicine 58(5): 913-928.

Sharp, Lesley A. (book/article TBA)

Stonington, Scott 2012 “On Ethical Locations: the Good Death in Thailand, where Ethics sits in Places.” Social Science and Medicine 75: 836-44.

Additional articles TBA

Registration

Enrolling in this course is possible from Tuesday November 6th until Thursday November 15th 23.59 hrs through the Honours Academy, via this link.
It is not necessary to register in uSis. It is not necessary to register in uSis.

Contact

Dr. Annemarie Samuels