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      Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’

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          Abstract

          Around the world there is growing interest in the manner in which care is delivered to people at the end of life. However, there is little unanimity on what constitutes a ‘good death’ and the appropriate societal responses to the issue of delivering culturally relevant and sustainable forms of end of life care in different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the emerging narratives of global palliative care and offer an assessment of their implications. We relate this to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the development of palliative care provision, and to the emergence of a widely recognised global ‘quality of death index’. We consider an alternative approach to framing this debate, drawn from a subaltern and post-colonial studies perspective and suggest that adopting a truly global perspective will require acceptance of the plurality of past and present local problems and issues relating to end of life care, as well as the plural possibilities of how they might be overcome. In that context, we would not aim to universalise or privilege one particular global future for end of life care. Instead of homogenising end of life interventions, we seek to be open to multiple futures for the care of the dying.

          Highlights

          • Post-colonial perspective re-frames debate on the future of global palliative care.

          • Provides innovative critique of global rankings of ‘quality of death’.

          • Advocates multiple futures for end of life care in different settings.

          • Applies much needed theoretical approach to debates on global end of life care.

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          Most cited references45

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          Good enough death: autonomy and choice in Australian palliative care.

          This paper draws upon Australian fieldwork to trace the changing notions of a good death held by hospice and palliative care practitioners. Palliative care practitioners search for an ideology to inform their practice within the context of a complex society for which there is no one good death. Social demographics, the multicultural nature of society and institutional constraints frame the experience of dying in complex ways, while contemporary social responses to dying reflect the uncertainties held by many Australians. Despite the fragmentation evident within contemporary Australian society, the hospice movement in Australia and in other Western contexts has sought to reintroduce a ritual for dying. The good death ideology of the original hospice movement proposed a manner of dying in which open communication and acceptance of death were actively encouraged. The hospice model of a good death, however, has become increasingly inappropriate in the current climate of patient autonomy and consumer choice. The practice of palliative care, a holistic form of care for dying people, which follows the individualistic ethic of choice, has emerged from and replaced the original hospice movement. Consequently, the good death of the original hospice movement has been abandoned in favour of a philosophy of a 'good enough' death. However, what may appear a compromise informed by ethical practice masks a return to routine medical practices and a hierarchy of care which prioritises the physical management of symptoms. It appears that while palliative care practitioners may often fail in their facilitation of a good death for their patients, they can be proactive in alleviating their patients' pain and physical discomfort.
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            Poverty and violence, frustration and inventiveness: hospital ward life in Bangladesh.

            An ethnographic exploration was done in an orthopaedic ward of a government teaching hospital in Bangladesh to understand the nature of hospital culture in the context of Bangladeshi society at large. Life and work in the ward result in a culture that is simultaneously created by its inhabitants and the conditions in which they are situated. The study shows that biomedicine is a product of particular social conditions and that the hospital reflects features of its society. Behind the injuries and broken limbs in the ward are stories of violence, crime, and intolerance occurring in a society where masses of people fight over limited resources. In the ward people interact in an extremely hierarchical manner. The patients, who are mainly from poor economic backgrounds, remain at the bottom of the hierarchy. Doctors and other staff members are often professionally frustrated. Strikes related to hospital staff's various professional demands hamper the regular flow of work in the ward. Family members are engaged in nursing and provide various kinds of support to their hospitalized relatives. Patients give small bribes to ward boys and cleaners to obtain their day-to-day necessities. Patients joke with each other and mock senior doctors. Thus, they neutralize their powerlessness and drive away the monotony of their stay. Doctors develop 'indigenous' solutions to orthopaedic problems. Instead of using high-tech devices, they employ instruments made of bamboo, bricks, and razor blades. This study shows how medical practice takes shape in an understaffed, under-resourced and poorly financed hospital operating in a low-income country.
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              Palliative care reimagined: a needed shift.

              Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.
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                Author and article information

                Contributors
                Journal
                Soc Sci Med
                Soc Sci Med
                Social Science & Medicine (1982)
                Pergamon
                0277-9536
                1873-5347
                1 January 2017
                January 2017
                : 172
                : 72-79
                Affiliations
                [1]School of Interdisciplinary Studies, The University of Glasgow, Crichton University Campus, Dumfries, DG1 4ZL, Scotland, UK
                Author notes
                Article
                S0277-9536(16)30621-9
                10.1016/j.socscimed.2016.11.012
                5224187
                27894008
                59d43151-7620-46e0-81be-b6c20191ad49
                © 2016 The Authors

                This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

                History
                : 23 March 2016
                : 4 November 2016
                : 7 November 2016
                Categories
                Review Article

                Health & Social care
                end of life,global palliative care,global health,quality of death,death and dying,waiting room of history,post-colonial theory

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