Media Watch

2017; Volume 18, No 2, February

Media Watch: an annotated list of recent articles about palliative care in the news media and the literature

Evolving ethical and legal implications for feeding at the end of life

Annals of Palliative Medicine | Online – Accessed 19 January 2017 – This paper will examine the unique issues raised at the interface between law and ethics as it relates specifically to the controversial issue of alimentation (providing food and nourishment) at the end of life. This analysis will be based, in part, on a historical case involving Margot Bentley (MB), an 82-year-old Canadian residing in a long-term care facility in British Columbia. MB is living with and dying from the end stages of Alzheimer’s disease and in 2013 Margot, her family and the care facility she resides in were at the centre of a legal battle over the circumstances necessary to constitute an imposed duty on caregivers to provide the basic necessity of life (food). This case exposed a number of concerns: the questionable utility and limits of living wills, surrogacy decision making, the actual meaning of implied consent, and what exactly constitutes medical treatment versus basic care. What is unique about this case is that it does show gaps in both ethical and judicial analysis which has resulted in a legal decision to provide a level of care the family believes would be untenable and lacking in dignity for MB.

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N.B. Link to full text.

Poverty reduction in India through palliative care: A pilot project

Indian Journal of Palliative Care, 2017; 23 (1): 41-45. In India, where 1% of the population suffers from chronic or terminal illness, patients stop working, families prioritise care over income, and households increase expenditure on treatments and cures. As households fall into greater poverty, they sell assets, take out unsustainable debt, and the situation spirals out of their control. The poorest households are particularly affected, as their illiteracy and lack of influence make it most difficult for them to gain access to government benefits. Palliative care (PC) in India has an inherent potential to reduce household poverty, including through reducing households’ expenditure on medical care, assisting patients and their family members to receive government benefits, and enabling some family members and patients to work again. Emanuel Health Association’s PC services are achieving these poverty reduction impacts even before the Association has developed them for poverty reduction. With the development and refinement of these services, more patients and family members could enrol in PC, and earlier. More households would spend less money on inappropriate treatments and hospital visits and medicines, would make these savings earlier, would enrol for all government benefits, would earn more again, would save more money over the course of the illness, and would organise inheritance to benefit women and girls. Severe illness devastates poor households’ income and expenditure, driving them into hopeless poverty. Holistic PC has vast potential to limit all these effects.

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Achieving prudent dementia care (Palliare): An international policy and practice imperative

International Journal of Integrated Care, 2016;16 (4).This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care (Palliare), that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially, between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice.

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End of life in prison: Talking across disciplines and across countries

Journal of Correctional Health Care, 2017; 23 (1): 11-19. What a good end of life means is a particularly relevant question in the context of confinement and prison. Most of the questions and issues raised by end of life (EOL) for those living in liberty also apply to the correctional setting. However, the institutional particularities and logics of the prison create unique barriers and make it difficult in practice to reconcile concerns in regard to EOL – like care and comfort – with the mandate of corrections – confinement and punishment. At present, the literature on EOL in prison is dominated by U.S. contributions. The authors . . . invited researchers from various disciplines in various countries to analyze the topic from their disciplinary perspectives and within the respective institutional frames of their national contexts.

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N.B. This issue of the Journal of Correctional Health Care includes several articles on end-of-life in the prison system. Journal contents page.

End-of-life care in Ireland

Costs of formal and informal care in the last year of life for patients in receipt of specialist palliative care

Palliative Medicine | Online – 17 January 2017 – Economic evaluation of palliative care (PC) has been slow to develop and the evidence base remains small. This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist PC in three different areas in Ireland. Formal care costs are calculated for community, specialist PC, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost. Informal care is valued at the replacement cost of care. Mean total formal and informal costs in the last year of life do not vary significantly across the three areas. The components of formal costs, however, do vary across areas, particularly for hospital and specialist PC in the last 3 months of life. Costs in the last year of life for patients in receipt of specialist PC are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist PC inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in PC.

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Media Watch is intended as an advocacy, education and research tool. The weekly report, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. Each month, this section of the IAHPC Newsletter will publish an abstract or summary of an article or report of special interest noted in recent issues of Media Watch (see below).

Read the current and back issues of the weekly report.

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