Palliative care originated in the hospice movement, which began in the 1960’s and 70’s in the United Kingdom, and spread quickly worldwide. This movement was directed broadly against medical and societal ‘denial’ of death. It was asserted that this denial of death resulted in three main ills: a taboo on conversation about death, the medicalization of death, and the segregation of the dying from the rest of society. This movement resulted in many successes for the care of patients with terminal or life-threatening illness, including the creation of the hospice benefit in the United States; the proliferation of residential hospices and palliative care programs; and the founding of the specialty of Palliative Medicine. However, the broader aim of changing the culture of denial surrounding death was less successful. Indeed, tying palliative care to acceptance of dying created a situation where those who were not acceptant (and perhaps could most benefit from psychological help from palliative care) were not reachable. In order to reach this population, the field of hospice and palliative care had to change.
The main change in the focus of palliative care was its progression ‘upstream’ to encompass care at earlier stages of the illness trajectory, rather than focusing only on care at the end of life. This change was formalized by a new palliative care definition by the World Health Organization in 2002. Resulting changes in the field of palliative care included expansion to the outpatient setting and from cancer care to illnesses with a less certain prognosis; integration of palliation with treatments aimed at cure; and training of non-specialists to integrate primary palliative care into routine practice. These reforms in palliative care were met mostly with enthusiasm by the medical community, particularly as they were corroborated with evidence from randomized trials that earlier involvement of palliative care improves quality of life.
In contrast, the public has largely not kept up with the evolution of palliative care. Instead, the label of the specialty that deals with the dying patient has stuck fast. This is a problem that palliative care will need to deal with if it is to reach those who do not wish to accept that they are dying. Some services have reacted by renaming their service ‘supportive care’, others have embedded clinics within oncology, still others have created automatic referral services or care pathways. The success of these endeavours remains to be determined. In addition, the populist movement in favour of physician-assisted suicide has gained ground, and in some countries including Canada has resulted in full legalization. This movement represents a discourse that has disrupted the traditional dichotomy of acceptance and denial of death, and will undoubtedly influence the further evolution of palliative care.
In sum, palliative care is linked inextricably to discourses on death and dying. The hospice movement sought to change societal attitudes toward death; however it can be argued that instead, these attitudes have persisted and have shaped the evolution of palliative care.
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