Whose Business is Dying 2011 | Palliative Care | End Of Life Care

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Cultural Studies Review volume 17 number 1 March 2011 http://epress.lib.uts.edu.au/journals/index.php/csrj/index pp. 15–30  John Rosenberg 2011    Whose Business is Dying? Death, the Home and Palliative Care JOHN ROSENBERG CALVARY CENTRE FOR PALLIATIVE CARE RESEARCH   —BACKGROUND Support and care of people at the end of their lives, in some form or other, is present  in  all  societies.  What  is  referred  to  today  as  palliative  care  represents  a  particular  response  to  death  an
  Cultural Studies Reviewvolume 17 number 1 March 2011http://epress.lib.uts.edu.au/journals/index.php/csrj/indexpp. 15–30  John Rosenberg 2011   ISSN 1837-8692 Whose Business is Dying? Death, the Home and Palliative Care J OHN R OSENBERG   C ALVARY C ENTRE FOR P ALLIATIVE C ARE R ESEARCH   —B ACKGROUND   Support and care of people at the end of their lives, in some form or other, is present in all societies. What is referred to today as  palliative care represents a particularresponse to death and dying set in specific historical and cultural contexts. 1 Themodern hospice movement srcinally emerged, at least in part, as a response to theperceived neglect of dying people by the dominant biomedical model of health carein parts of the Western world during the post‐war period. 2 While it wasacknowledged that the biomedical approach enabled the development of proficiencyin the cure of disease and prolongation of life, some argued modern medicine hadlost its human face. 3 Medical progress in the twentieth century ‘transformed theexperience of dying from a part of daily life to a highly technological event’. 4 Deathleft home, as it were; its stewardship increasingly relinquished by families tocharitable institutions, to newly emerging acute hospitals or simply left to chance. Asa consequence, the home—the domestic space normally the sphere of family, care    VOLUME 17 NUMBER 1   M  AR 2011   16 and comfort—has increasingly been replaced by institutional spaces as the most fitting scenes for death to occur.The biomedical model has been criticised for removing the sick or dyingperson from their social context. 5 Diagnoses and treatments increasingly failed tocorrespond to the day‐to‐day reality of health and illness experienced by ‘ordinarypeople’. 6 Dying and death is not considered solely a health care event, but is seenrather as a societal concern affecting individuals and their personal, interpersonaland social contexts, as well as whole communities. 7 This sentiment has beeneloquently captured:The experiences of serious illness, dying, caregiving, grieving and deathcannot be understood within a medical framework alone. These events arepersonal, but also fundamentally communal. Medical care and healthservices constitute essential components of a community’s response, but not its entirety. 8  Yet, despite its srcins as ‘a small rebellion against the way dying peoplewere cared for’, palliative care continues to exhibit many of the paternalisticpractices of mainstream health care that its forebears were resisting. 9 Thesepractices, while well intentioned and often effective, find their srcins in a sense of ‘ownership’ of the business of dying. But the clinical expertise of palliative carepractitioners in the business of dying does not equate with ownership. The benign—but enduring—paternalism of palliative care service provision remains aphilosophical and structural barrier to a paradigmatic shift towards a morecomplete understanding of the business of dying. Nascent attempts to promotecommunity engagement in end of life issues are evident in the interface betweenpalliative care and public health but dying remains, for the most part, the remit of health care services. As such, the business of dying is incompletely attended. I arguehere for a need to reappraise the business of dying, and for the home to be seen as afitting death scene. —T HE CUSTODY OF CARE The modern hospice movement sought to restore a ‘holistic approach to patient care, the family as the focus of care, and importance of multidisciplinarycollaboration on a day to day basis’. 10 It reclaimed dying through localised  John Rosenberg—Whose Business is Dying?   17 community action, with the momentum for the development of services often led byindividual clinicians and idiosyncratic funding decisions. 11 This unregulated andrapid proliferation of palliative care services in the Australian setting has beendescribed thus:The growth of specialist palliative care services for patients has beenmostly unplanned and uncoordinated by Health Authorities. Development has been largely in response to local pressure, enthusiasm, and fund‐raising activity, and remained mostly within the charitable, independent sector. 12  As a result, it seemed inevitable that conventional palliative care serviceswould be integrated into the mainstream. By the end of the 1990s, evidence of theextent of palliative care’s mainstreaming was reflected in Faull’s statement that ‘palliative care is not an alternative to other care but is a complementary and vitalpart of total patient management’. 13 This was a destination perhaps not envisagedby the pioneers of the modern hospice movement, and some authors expressedconcern that such integration represented a threat to the founding principles of hospice and palliative care through its routinisation and medicalisation. 14 Conversely, Clark warned the palliative care discipline not to self‐destruct throughprotective custody of specialist knowledge, and to instead become more involved inthe resourcing of mainstream services. 15 One cost of this mainstreaming of palliativecare services, it is suggested, is the progressive abandonment of the social context of dying people, increasing instead ‘the emphasis on physical care’ while‘simultaneously de‐emphasizing psychological, social and spiritual care’. 16 Kellehearand others have proposed that the repositioning of palliative care services withinmainstream health care systems has increased a focus on illness and disease at theexpense of health and wellbeing. It has also been suggested that contemporarymodels of palliative care are profoundly paternalistic and devaluing, and thereforefundamentally flawed. 17  The mainstreaming of palliative care retained a focus upon models of serviceprovision, and although providing some important clinical benefits to ‘users’,demonstrated that many contemporary conventional models of palliative care donot adequately locate death and dying in the social context of people’s lives. 18  Ironically, this is the criticism made of mainstream health care from which the    VOLUME 17 NUMBER 1   M  AR 2011   18 modern hospice movement srcinally emerged in reaction to. As claimants to thecustody of the care of dying people, has palliative care fallen short? —T HE ‘ USERS ’ OF PALLIATIVE CARE   Paradoxically, it has been pointed out that while the modern hospice movement hasalways held local activism—and therefore, to some extent, community ownership—in high esteem, the systemisation of hospice into the health care specialty now called‘palliative care’ had again disenfranchised the very groups the palliative careprofessional community must rely on for its survival. Small stated that ‘user voiceswere squeezed out, indeed health professionals were given more authority to defineusers’ involvement and there was a tendency to conflate user involvement andpublic participation’. This assertion directly confronts the modern hospicemovement’s own view of its role in the empowerment of ‘users’. Small went on toexplore the problematic nature of ‘user’ involvement in palliative care, arguing that only consumers of palliative care can truly assess what constitutes a good death, andtherefore what good palliative care might resemble. 19  Firstly, he cautioned against the hybridisation of consumers of palliative careas some kind of homogenous group, despite their very different needs and priorities,compounding the existing generalisations made on the basis of ethnicity, familyroles and conceptualisations of suffering. With few exceptions, a good death haslargely been measured by nurses’ perceptions of patients’ and families’ acceptanceof the death and the degree of peace with which it was met. 20 One of theseexceptions is found in Kellehear’s early interviews with one hundred dying people,where the core elements of a good death were identified as an awareness of dying,preparations for death, capitulation of roles and responsibilities, and makinggoodbyes with others. 21 In their critique of his study, Hart, Sainsbury and Short noted his emphasis upon:the active and critical role that dying people played in the socialmanagement of their dying as they engaged in separations and madepreparations for the end of their lives. [A good death] is a set of culturallysanctioned and prescribed behaviours set in motion by the dying, throughwhich their death is made more meaningful for all concerned... 22  
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