End-of-Life care: the death of palliative medicine?

813 THE DEVELOPMENT OF JOURNALS in palliative medicine are to be welcomed. We are concerned, however, about the extensive use of the term end-of-life care in your pages. We have found this phrase in 24% of article titles or subsections in Journal of Palliative Medicine between January 2000 and April 2002. We have philosophical and practical objections to the (mis-)use of this descriptor. We wish to take this opportunity to summarize our concerns. “End-of-life care” is an imprecise term but implies time-defined care. It is a quantitative rather than qualitative descriptor that excludes the purpose of care and fails to recognize the complex skill sets inherent in good palliative medicine. This unhappy label also stigmatizes the emerging field of palliative medicine1 while simultaneously minimizing the high case mix index and complexity of this challenging patient population. It advertises to the general public and our professional colleagues medical care limited to the imminently dying. We are concerned that the phrase will promote among potential referring physicians a transitional “discontinuous” care model rather than a more desirable seamless “collaborative” care with early referral. When everything else has been exhausted, the patient highly symptomatic, with social support collapsing, referred to an end-of-life care specialist. Patients who could and should be comanaged2 (for example by a palliative medicine specialist and oncologist) will naturally refuse services until actively dying when confronted with the end-of-life care referral label.2 Other subspecialties such as cardiology and pulmonary medicine manage congestive heart failure and chronic obstructive lung disease without resorting to the term endof-life care during the final trajectory of the patient’s illness. It is a negative term lacking hope and describes only a part of the broad spectrum of palliative care practice. We believe it is also an emotionally charged phrase and with more widespread use will emerge as a communication problem similar to the present difficulty of introducing the word “hospice” to patients or families. In contrast palliative care (i.e., the philosophy of palliative medicine) is not time-confined but goal-oriented.4 We are here to help patients “live until they die” whenever that occurs.1 Palliative medicine is a discipline4 that allows for close collaboration within the acute care medical system. To be effective and financially viable it must also be part of the acute medical care system and judged by the same standards.5 The term palliative medicine defines a professional practice without being exclusionary. Palliative medicine may also be preventive medicine in that early intervention in poorly controlled pain prevents the expansion and amplification of pain through neuroplasticity. Early intervention interrupts poor communication, limits anxiety and reduces psychosocial suffering which is amplified to intractablity in the dying.6 The World Health Organization (WHO) definition of palliative care states that “many aspects of palliative care are also applicable earlier in the course of illness in conjunction with anticancer treatment.”3 The Policy Framework for Commissioning Cancer Services (United Kingdom, 1994) states “palliative care is required for many patients early in the course of their disease, sometimes from the time of diagnosis. It should not be associated with terminal care. The