Advanced Planning for Online Accounts and Data

Arms (1)

1. type

   OTHER

   label

   Post-Mortem Plan

   description

   Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience.

   interventionNames

   1. Other: Post-Mortem Plan

Primary outcomes (1)

1. measure

   Determine best practices for supporting participants

   timeFrame

   5 years

   description

   The investigator will use interviews to develop a broad understanding of the terminal patient, the network, and the relevant accounts and data. During interviews with the terminally ill participant, the study team will seek to develop an understanding of the participant as a person, the network and its key members, and establish a shared set of expectations. The investigator anticipates members of the patient's social network will be involved during this interview. Through personal interviews, the study team will identify end-of-life needs and wishes. The study team will engage in value elicitation activities to identify both what the values are that should inform the work with the participant, as well as the source of values and the agency people have in relationship to them. In many cases, participants will have already engaged in versions of these conversations focused on other domains in their life (e.g., finances, funerary wishes, etc.).