Academic journal article Frontiers of Health Services Management

A Good Death: Changing the Script for End-of-Life Care

Academic journal article Frontiers of Health Services Management

A Good Death: Changing the Script for End-of-Life Care

Article excerpt

HAVING BEEN ENGAGED in the delivery of end-of-life care for more than 25 years, I am equally baffled and elated at this juncture. I am baffled by knowing just how long it has taken for medicine to recognize the value of palliative care, and I am elated that in many hospital circles there seems to be a newfound infatuation with, and respect for, the practice.

Since hospice care began, in part, as a mini-revolt against traditional treatment of the dying and the medical establishment, it's perhaps not surprising that hospitals and physician specialists were not initially interested in becoming familiar with its tenets of care. There was little incentive to minimize procedural interventions, even in the face of incurable illness. Death was, and for the most part still is, viewed as professional failure; physicians were not prepared in medical schools to consider the concept of a "good death."

THE HISTORICAL PERSPECTIVE

Hospice was developed as a patient-centered movement, primarily driven by nursing, pastoral care, and social work - a softer approach from less data-driven disciplines. Medicine was fulfilling its sanctioned role of pushing the boundaries of treatment specifically aimed at holding back the enemy - death - at all costs. Simultaneously, we began to believe the myth that death could be prevented, or at least prolonged indefinitely. We had nearly conquered death with the latest treatments and medical discoveries; TV shows inaccurately portrayed and glamorized CPR success rates.

Three decades following its humble beginning, hospice care in America has become the gold standard of end-of-life care. Founded largely by missiondriven and philosophically grounded advocates, programs began in basements of churches and in public health departments. The demographics today indicate a large and diverse group ofhospice and palliative care providers, including board certified hospice and palliative medicine physicians. The National Hospice and Palliative Care Organization estimated that in 2009 there were 3,600 hospice agencies with a total of 5,000 site locations. Nearly 58 percent of the hospice agencies were freestanding or independent hospices. Among the others, only about 20 percent operated as a part of a home health agency and another 20 percent were part of a hospital system (NHPCO 2010). Hospice programs have developed primarily as communitybased initiatives. As such, they have a clear and compelling focus - enhancing the quality of care for those approaching life's end. Many seek to extend palliative care expertise across the continuum of healthcare and are poised to partner with assisted-living, long-term care, and hospital facilities.

THE INTERFACE OF PALLIATIVE AND HOSPICE CARE

Hospice care is typically provided at home or in a homelike setting, while palliative care is more commonly provided as a specialty consult service within a hospital or other institutional setting. Although in many countries, the terms hospice and palliative are used interchangeably, the payment mechanism in the United States (primarily Medicare) is responsible for a line of demarcation, albeit somewhat arbitrary, between palliative and hospice care.

Hospice care in America is reserved for those with a defined prognosis, despite the fact that prognostication is not a science and physicians often overestimate a patient's anticipated survival (Murphy et al. 2000). In order to access hospice care through Medicare and most insurance plans, a physician is required to provide a prognosis certification of six months or less life expectancy if the disease runs its anticipated course. Without regulatory barriers to prohibit the simultaneous provision of cure-oriented or disease-modifying therapy with comfort-oriented palliative care, the latter may be easier to introduce to patients and families. Dr. Joanne Lynn, one of the researchers who conducted the SUPPORT project (1995), has referred to the phenomenon as the "dance of silence": simply following a cultural script and planning the next treatment or procedure, without engaging in meaningful conversation about what patients want. …

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