AMA Journal of Ethics
Dying is a uniquely individual yet deeply shared and universal experience; it profoundly impacts perceptions of culture, personhood, and identity. For many Americans, it is also an experience widely discrepant from the one they want and envision for themselves and their loved ones. Over the past decade, there has been growing awareness of the incongruence between the way Americans say they want to die and how they actually do. But while most would agree that this reality is not the ideal that clinicians or patients strive for, what is less agreed upon is what the roles of clinicians and patients should be in defining what actually constitutes dying and good care of dying people. What do patients and clinicians need to know about dying and care at the end of life? What barriers exist to accessing and employing this knowledge in the face of difficult decisions?
To best answer these questions, it is useful to examine the social structures and supports already in place for end-of-life care and to understand how they are being utilized. To begin with, hospital palliative care programs are expanding rapidly in order to meet the physical and emotional needs of patients with serious or terminal illness. Robust evidence now exists demonstrating that early palliative care improves the dying experience for both patients and families while generally reducing health care costs and potentially prolonging survival. Despite these facts, there is significant variation in physician practice in the care of patients at the end of life and a general consensus that palliative and hospice care are underutilized by physicians.
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