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How Hospitals Shape End of Life

How Hospitals Shape End of Life Care
Summary of Sharon. Kaufman, PhD Presentation to
California Coalition for Compassionate Care
Steering Committee Meeting June 3, 2005
Excerpted from Minutes of Meeting

Sharon Kaufman, Ph.D. Professor of Medical Anthropology at UC San Francisco recently published a book entitled, And a Time to Die: How American Hospitals Shape the End of Life. (2005, NY: Scribner). Dr. Kaufman said in her role as a medical anthropologist she “makes the strange, familiar; and makes the familiar, strange.” She described her recent research about the culture of hospitals and how they influence the “problem of death,” which she defined as people dying with too much technology and not enough humanity.

Key points raised by Dr. Kaufman:
Discourse in U.S.
– Dying wasn’t happening in hospitals in the way people wanted to die
– Patients’ stories began to appear in journals, op-ed pieces, and culminated in Moyers special on Dying in America
– Legal issues such as physician-assisted suicide surfaced in several states; court cases were publicized.

Tension between two competing values: 1) desire to extend life and expectation that it can and should be extended, and 2) allowing death to occur without intervention.

Historical perspective
– 1975 Karen Ann Quinlan case opened a new paradigm around decision making at end of life; medical technology can expose grotesque outcomes; death becomes matter of timing (at bedside and in courts)
– Elizabeth Kubler Ross book on death and dying; 5 stages of transition; dying person has needs that need to be met by people of various disciplines
– Advent of ICU departments across the country and introduction of mechanical ventilator

Contradictions in hospitals
– Value of autonomy only applied in narrow sphere (decision making about specific treatments that are offered to patient/family). No one is an unencumbered participant in this (patient, family, HC professional). Patient Self Determination Act legislated patient autonomy but can’t separate it cleanly.
– Death is rarely spoken of or seen until shortly before it occurs. This builds on information from SUPPORT study in 1995; a decade later she found similar results in her small study of 3 hospitals.
– Heroic, aggressive care now exists alongside palliative care and shifting from the first to the latter is not easy.
Much of discussion about decision making occurs in the grey zone; a blurred point when people hover between life and death and causes great suffering for all involved.

Hospital culture
– Things have to move along and along the way people have to wait.
– Demands of hospital system requirement both the movement and the waiting; so too does the reimbursement mechanism. This determines the time of death and style of dying.
– Hospitals allow families to “set the course,” but guide them along the course that the hospital wants.
– Quality of life (QoL) is now part of the regular discourse on many healthcare issues, but at EOL, QoL is used as a choice criteria. In hospital, when control of dying is underway, QoL is invoked as if patients/families could imagine something worse and choose between them.
– Life sustaining treatment (LST) is promoted until it’s “time,” then hospitals shift to promoting death (removal of LST).

Things to understand if seek system change
– Work of hospital is dominated by life supporting pathways
– Patients and families have no tools with which to understand these hospital systems.
– Pathways create situation where timing of death is …
– Timing is open to negotiation; hinges on support of understanding what the patient wants, which is usually not known, so discussed in language of “QoL, suffering, dignity”.
– Historically unprecedented authorizing “time of death”
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Sharon Kaufman, PhD Email: kaufman@itsa.ucsf.edu
Tel: 415-476-3005. Click here to visit Dr. Kaufman’s Website

Dr. Kaufman is Professor of Medical Anthropology (in Residence) in the Institute for Health & Aging, Depart. Of Social and Behavioral Sciences, and Department of Anthropology, History and Social Medicine at the University of California, San Francisco.