I am thrilled to announce that my book, The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End-of-Life Care – Lessons from The Netherlands,” (2009), was recently selected to receive the 2011 Margaret Mead Award from the Society for Applied Anthropology and the American Anthropological Association. The Margaret Mead Award is presented to a younger scholar for a particular accomplishment such as a book, film, monograph, or service, which interprets anthropological data and principles in ways that make them meaningful and accessible to a broadly concerned public – skills for which Margaret Mead was admired widely. Past recipients of the Margaret Mead Award have included Nancy Scheper-Hughes, Alex Stepick, Paul Farmer, Susan Scrimshaw, Philippe Bourgois, and Leo Chavez.
The Maintenance of Life is about what has developed in one present-day society to address social death and modern dying. It is based on a 15-month ethnographic study of home death in The Netherlands with general practitioners, end-of-life patients and their family members. The book develops from two important study findings: (1) that euthanasia in practice is predominantly a discussion, which only rarely culminates in a euthanasia death; and (2) that euthanasia talk in many ways serves a palliative function, staving off social death by providing participants with a venue for processing meaning, giving voice to suffering, and reaffirming social bonds and self-identity at the end of Dutch life. Ironically, those who engage in euthanasia talk often choose not to die by euthanasia and instead live longer lives as active participants engaged in Dutch social networks even at the end of life.
Thank you so much for the award and for supporting the book!
I want to thank Dr. Ashish Goel, the University College of Medical Sciences and the Indian Medical Association for inviting me to be a key note speaker and participant in the recent International Workshop for Development of a Policy Statement on Euthanasia and Related End of Life Care Issuesin New Delhi, India between August 5-7, 2011. The goal of this workshop was to assemble a group of experts from India and from around the world to develop policy recommendations on Indian end-of-life care following a recent Supreme Court case legalizing the withdrawal or withholding of support at the end-of-life (passive euthanasia) under certain conditions.
The subject of Physician Assisted Suicide (PAS) and Voluntary Euthanasia (VE) was brought into public debate in India by the recent verdict by the Supreme Court on the Aruna Shanbaug case making passive euthanasia permissible under certain conditions. In 1973, a nurse, Aruna Shanbaug, was sodomised and strangled by a hospital custodian whose advances she had spurned, leaving her brain dead and in a persistent vegetative state. Since that time Shanbaug, shunned by her family, has been kept alive for the last 37 years originally taken care of by former co-workers at the hospital where she worked. In March 2011 in response to a petition by a journalist on Shanbaug’s behalf, India’s Supreme Court ruled that Shanbaug should live, while at the same time stating that passive euthanasia – the withdrawal or withholding of support – be permissible in certain cases based on merit. The debate highlights the concern of Indian society regarding the last phase of life immediately prior to death. This case sparks a new debate in India on just what kind of end of life options physicians and families want available. It also raises important moral and ethical conflicts regarding all types of euthanasia, active and passive, and the maintenance of life in patients whose lifespan has been prolonged at the cost of their quality of life (QOL) without adding real hope of recovery.*
In August 2011, I met with physicians and policy makers from India and with international experts to discuss under what conditions withdrawal or withholding of support might be permissible following the Supreme Court case as well as a host of other end-of-life issues, including whether active euthanasia was a viable option for India. The debate was incredible to watch as participants grappled with real issues around active and passive euthanasia, equity and access to health care services across the population, palliative care options, and costs of end of life care, among other issues around compassionate care at the end of life. I got to meet numerous physicians, palliative care experts, and advocates from across the country of India, including Dr. Ashish Goel with the University College of Medical Science at the University of Delhi; Dr. D.R. Rai, Secretary General of the Indian Medical Association; and Harmala Gupta, President of CanSupport, a leader in palliative care in India. In addition, I met a number of international experts, including Dr. Philip Nitschke and Dr. Fiona Stewart, with Exit International from Australia; Dr. Robert Young, with LaTrobe University in Australia; and Prof. Tri Rahardjo with the Centre for Ageing Studies at Universitas Indonesia. And, of course, the food was delicious and the rickshaw ride through the streets of Chandni Chowk unforgettable.
It was simply exciting to watch Indian physicians and scholars debate and draft new policy on the end-of-life. I look forward to seeing what develops.
Frances Norwood, PhD
*NOTE: no single definition of euthanasia is used around the world where euthanasia is debated or has already been made legal. However, passive euthanasia is generally defined in the international community of scholars as the withdrawal or withholding of support to persons near the end of life (such as removing artificial respiration or withholding food or water) and active euthanasia is defined as actively contributing to the end of life typically by a physician and at the person’s explicit request (such as assisted suicide where someone is provided with the means to end their life or euthanasia where a physician might inject a lethal dosage to end a life).