Evolving Definitions of Palliative Care: Upstream Migration or Confusion?

Abstract

Palliative care has evolved over the decades from its roots in the hospice movement to a much wider approach in which early intervention further "upstream" in the illness is encouraged to improve quality of life for patients and their families. This new definition has a strong evidence base in cancer trials and is supported by major national and international organizations. However, it has proven difficult to convince patients, the public, and even healthcare providers, of this upstream migration of palliative care, with many continuing to associate palliative care exclusively with end-of-life care. A multitude of definitions now exists, with varying emphasis on early intervention versus end-of-life care. In addition, a new nomenclature has emerged to conceal the end-of-life component of palliative care despite its continued importance, adding further to the confusion. Uncertainty within the specialty about the definition of palliative care will not reassure referring physicians and policymakers about its meaning nor convince them of its importance. Accuracy and clarity in the form of an established definition of palliative care are required to reduce misconceptions, facilitate clinical and academic development, and promote effective communication. This definition should acknowledge both expertise in end-of-life care and its relevance for improving outcomes early in the course of advanced cancer, and should be disseminated widely and practiced consistently.

Keywords: Cancer; Definition; Palliative care; Quality of life; Supportive care; Terminology.