Electronic end-of-life care registry: the Utah ePOLST initiative

As a patient's end-of-life approaches, it is typical for the disease to be the focus of treatment instead of the dying patient. There is limited congruence between the care preferred by patients and the treatment actually delivered to patients during their end-of-life. The Physician Orders for Life-Sustaining Treatment Paradigm has been endorsed or is in development in all but three states and the District of Columbia in an effort to ensure that patients are provided with adequate opportunities to specify their end-of-life care preferences. However, most states are using paper forms to document these preferences which may be inaccessible when needed. We have developed an electronic end-of-life care registry that allows authorized users to store and retrieve information pertaining to patients' end-of-life care preferences. In this paper, we describe (a) the requirements identified for the registry from the users' perspective and (b) the design and development of the electronic registry.