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How do surrogate decision makers describe hospice? Does it matter?

Division of Gerontology and Geriatric Medicine, University of Washington, Seattle, and Geriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington

Helene Starks, MD, MPH

Department of Medical History and Ethics, University of Washington, Seattle, Washington

Janelle S. Taylor, PhD

Department ofAnthropology, University of Washington, Seattle, Washington

Elizabeth K. Hopley, BA

Division of Gerontology and Geriatric Medicine, University of Washington, Seattle, Washington

Kelly Fryer-Edwards, PhD

Department of Medical History and Ethics, University of Washington, Seattle, Washington

Robert A. Pearlman, MD, MPH

Division of Gerontology and Geriatric Medicine, University of Washington, Seattle, and Geriatric Research, Education and Clinical Center, VeteransAffairs Puget Sound Health Care System, Seattle, Washington

We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Qf the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers.

Key Words: surrogate decision makers • hospice care • advance care planning

American Journal of Hospice and Palliative Medicine®, Vol. 23, No. 2, 91-99 (2006)
DOI: 10.1177/104990910602300205


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