This report summarizes findings from a multidimensional effort. It reflects the perspectives of experts in end-of-life care, advance directives and advance care planning, individuals with disabilities and other nationwide stakeholders. Advance care planning and the use of advance directives provide mechanisms for ensuring individual autonomy at the end of life. Three key findings of the study are: (a) effective advance care planning is an ongoing process best accomplished through continuing communication among individuals, clinicians and family members; (b) interventions for advance care planning can be carried out successfully; replication and implementation via health information technology hold promise for improving care toward the end of life; and (c) advance care planning must shift from a focus on formal written advance directive forms to a developmental discussion process. Specific attention could be given to models such as the Physician Orders for Life Sustaining Treatment program paradigm. [302 PDF pages]
Advance Directives and Advance Care Planning: Report to Congress
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Appendix B (pdf, 1.24 MB)
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Advance Care Planning
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Report to Congress