Come join me for the Society for Applied Anthropology Awards Ceremony and reception in Baltimore, MD. I will be there celebrating receipt of the 2011 Margaret Mead Award and signing copies of my book, The Maintenance of Life (2009). Come help me celebrate!
What: The Society for Applied Anthropology 72nd Annual Meeting, Awards Ceremony
Where: Sheraton City Center Hotel, Hospitality Suite #2727, Baltimore, MD
Allen Young, who runs his own blog for students of gerontology, just posted a great article that links to forums where you can talk to others on almost anything you need to know about long term care and “healthy aging,” or on how to create better options for living as we age. Are you looking for long term care options for yourself or your parents? Do you have questions about Medicaid or Medicare? Do you know want to know more about how other countries solve their long term care problems? Check out Allen Young’s 40 Informative Forums on Long-Term Elderly Care.
I am thrilled to announce that my dear friend Dr. Frances Norwood’s 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 Prestigious 2011 Margaret Mead Award from the Society for Applied Anthropology and the American Anthropological Association. Dr. Frances Norwood will be my guest on Monday to discuss her book and answer questions regarding the common practice of Euthanasia in the Netherlands and based on her research is this a good end of life experience compared to the way we die and/or suffer near the end of our existence in the United States? And how does conventional religious view this practice ? Please email your questions to me at firstname.lastname@example.org for Dr. Norwood prior to Mondays broadcast and we will try to get your questions answered.
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).
I recall seeing one of my mentors, medical sociologist and long-term advocate for nursing home reform, Charlene Harrington speak in Washington, DC. She said she had been advocating for nursing home reform for more than 20 years and that in those 20 years she had seen little positive change. The Affordable Care Act (ACA 2010) may well be the turning point that Dr. Harrington was looking for. From what I have learned of the ACA, this piece of legislation offers a first step towards real transformation of how we care for and support our parents and loved ones as they age. What the ACA does is facilitate the use of state and federal funding streams for home and community-based services and basic health care for all, both of which should have an important impact on how we age.
Here is what the Affordable Care Act has to offer: First, there is a much greater emphasis and facilitation for states to support home care and community-based living for people as they age. The Community Living Assistance Services and Supports (CLASS) Program establishes a new public long-term care insurance program geared towards funding home- and community-based supports. Once someone has paid into the program for a minimum of five years, they will be eligible to receive an average of $50-75 per day to help them pay for home or community based care. Section 2401, the Community First Choice Option, allows states more freedom to provide attendant care and increases the Federal coverage for these services. Section 2402 offers a number of ways to reduce barriers and facilitate access to a wide array of home- and community-based services through the existing Medicaid HCBS waiver programs. Section 2403 extends until 2016 what has been a successful demonstration project started under President Bush, Money Follows The Person. These grants allows states to develop projects that allow people to choose where they want to live, giving people with care needs the option to live at home or in the community as opposed to in a nursing home. Section 10202, the Balancing Incentives Program, also helps states have better flexibility to spend their money on non-institutional services.
Second, there appears to be some steps for reforming institutional care. Section 2701 includes the development of adult health quality measures and Section 2703, Health Homes for Individuals with Chronic Conditions, appears to be a measure to reformulate how institutional care is delivered for persons with a focus on “person-centered” care.
Successful long term care is so much more than the latest medical breakthroughs and treatments. It is about providing families with the supports they need to care for their loved ones and when family are not able to do that it is about stepping in to serve that function in the most humane and life-affirming way possible. Universal access to health and social supports is critical for transforming long term care in the U.S.. American families are carrying too much of the burden and while gaps are sometimes filled locally by community- and faith-based organizations and in part by national programs of Medicare and Medicaid, this is not enough.
Fixing this system does not necessarily mean spending more money on increasingly costly medical technologies, pharmaceuticals, or the latest medical advancements. It means spending wisely on home care, nursing and personal care, respite for families, and coordination of care, such as case management. It means doing further research on innovative and cost-effective solutions at the end of life, shifting the focus of federal dollars from nursing home to home- and community-based care where relationships can continue to keep people connected to life. It means looking into new ways to deliver nursing home and hospital care for those who do need that level of care. It means tapping into local resources (community- and faith-based initiatives) that have come to find cost effective and humane, care-based programs for persons who are elderly, disabled or dying. I believe the Affordable Care Act (2010) is that step in the right direction that we have all been waiting for.
Les Pays-Bas ont la plus longue pratique légale de l’euthanasie. Mais comment se déroule cette pratique dans la réalité quotidienne ? Que signifie-t-elle pour les Néerlandais qui choisissent de terminer leur vie de cette façon ? Comment cheminent-ils vers cette fin ? Comment les médecins qui pratiquent l’euthanasie dans ce pays assument-ils leur rôle et les responsabilités que leur confie la loi ? C’est ce qu’a voulu savoir l’anthropologue médicale américaine Frances Norwood qui, pendant quinze mois, a suivi, observé et interrogé des patients en phase terminale, leurs proches et leurs médecins à Amsterdam et dans de petites localités environnantes.
Elle nous livre ici les résultats souvent inattendus de sa recherche. L’étude de Frances Norwood est fascinante à maints égards : elle explique les assises culturelles et historiques de la pratique néerlandaise de l’euthanasie, elle compare la situation diamétralement opposée des patients en fin de vie aux Pays-Bas et aux États-Unis, rappelle les grands traits des deux systèmes de santé dans lesquels s’insèrent les pratiques de l’euthanasie aux Pays-Bas et du suicide assisté en Oregon. Elle introduit aussi le concept de « mort sociale » : avant même son décès physique, le mourant perd ce qui fait de lui un individu autonome, participant actif dans son milieu, avec lequel il n’interagit plus.
Plus encore, elle nous livre les témoignages touchants de personnes en fin de vie et de leurs proches par de larges extraits des entrevues qu’elle a menées (en néerlandais) auprès d’elles. Elle y joint même le témoignage de sa propre mère, qu’elle a accompagnée dans son agonie de cancéreuse. Frances Norwood relate sa propre expérience d’accompagnement avec une candeur et une humanité que l’on retrouve rarement dans les ouvrages scientifiques.