Frances Norwood’s book ‘The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End- of-Life Care – Lessons from the Netherlands’ provides an in-depth look into end-of-life care in the Netherlands and how legal euthanasia has helped to shape this landscape.
The book draws on 15 months of qualitative data including direct observation and in-depth interviews with general practitioners, end-of-life patients and their family members.
Norwood argues that conversations concerning euthanasia rarely culminate in a euthanasia death. Furthermore, these discussions open up a more general discussion about end-of-life between patients, their families and healthcare professionals. They can provide a space for patients to talk about their suffering, reaffirming social bonds and self-identity, helping to prevent “social death.”
Norwood examines how the euthanasia policy in the Netherlands has shaped the experience of patients at the end-of-life and how this compares with the situation in the United States.
Reviewer – Erin VW Andrew
“HIV/AIDS has made medicine understand that if it is only focused on cure and ignores suffering it is not doing its job. It has made the call for what palliative care is all about imperative, and the role of palliative care in fighting HIV/AIDS inevitable. The amount of suffering is simply too great, and the promise of cure, for many, too distant. Palliative care provides an effective model for integrating many aspects of care that are essential in the fight against HIV/AIDS. Obviously the model will be quite different in Windhoek than Washington.”
J. O’Neill – Deputy Coordinator and Medical Director,
Office of the Global AIDS Coordinator, US Department of State
To mark World AIDS day we are highlighting a number of important reports which address the burden of AIDS and the availability of palliative care, particularly in sub-Saharan Africa.
The first report is the 2010 edition of the ‘UNAIDS Report on the global AIDS epidemic’ which provides country by country data on AIDS prevalence and country response.
The second report, from which the above quote is taken, focuses on Sub-Saharan Africa and provides an overview of existing palliative care models from the region. The report took a broad approach, including relevant cultural, epidemiological, practice and research issues. This report, ‘Palliative Care in Sub-Saharan Africa: An Appraisal’, was produced by King’s College London and the Diana Princess of Wales Memorial Fund and published in 2004.
A further report produced by King’s College London and the Diana Princess of Wales Memorial Fund concerns paediatric palliative care in Africa. The report, ‘The Status of Paediatric Palliative Care in Sub-Saharan Africa – An Appraisal’, aims ‘to identify and appraise the evidence for paediatric palliative care in sub-Saharan Africa, in order to identify best practice and effective models of care, and to inform the development of the discipline. This report was published in 2010.
If you have any suggestions for further reading, please share them with us via the comments section.
The European Association of Palliative Care (EAPC) has produced a series of reports charting the development of palliative care services in Europe.
Individual country reports can be accessed here.
In addition, a list of national and regional European palliative care associations can be found here.
The Hospice Foundation of America has its own blog which has a great section on culture. The culture posts mostly deal with disparities in hospice use by ethnic group.
Diversity and End-of-Life Care – Hospice Foundation of America
The Hospice Foundation of America broadcast the 2009 National Bereavement Teleconference “Diversity and End of Life Care” on April 29th 2009. For more information about how to access resources produced for the conference, click here.