Personal Legacy Library Service

This service has developed out of a need to address the

end-of-life concerns of a patient population lacking structured opportunities to

author their own life legacies.

What is it?• A "legacy building" micropublishing service that extends to

patients in end-of-life care a venue for expressing their storieso Each patient composes a book that can be printed in flexible

quantities via on-demand technology (Shutterfly)o Those who consent to have their "legacies" shared, will have

their books added to a community collection o Held once weekly on-site for three hours between

September and June • With the support of healthcare providers, the librarian as

facilitating conversations between patients and family member(s) to invite introspection and create positive memories

• Also providing instruction (knowledge) in self-publishing and navigating the Shutterfly interface to empower patients and their families to use these tools meaningfully

• Program as optionalo Must be cognizant of cultural and spiritual diversityo Writing as not a culturally relevant tool for all people

The Community Served:Patients:• Individuals facing death as frequently more deliberate in their

intent to find purpose and meaning for their lives• Need tangible opportunities to re-affirm their sense of self-worth

and remain engaged in the community Family:• Need opportunities to meaningfully connect with their loved

ones in end of life to support the grieving process• Reluctant to discuss death and dying with loved one. Both

patient and family as needing safe and supported space to open up to one another and normalize their fears

Healthcare Providers:• Limited in their access to the resources, time and technical

expertise needed to invite introspection and facilitate meaning-making when treating advanced illness

New Librarianship:• This service is an example of "embedded

librarianship"--librarians get out of the libraries and interact with the communities they serve• Rather than focusing on artifacts, librarians will

be more focused on developing conversations with and among members• Librarians are an appropriate choice to act as a

bridge between community stories and the capturing of these stories as they are should be trained in and have a high level of digital fluency, as well as skills to be adaptable and flexible in new situations

Advancing the Mission:• Mission: To improve society through

facilitating knowledge creation in their communities (Lankes, 2011)• Facilitating: By ensuring four elements of

facilitation as identified by Lankes--access, knowledge, environment and motivation--are in place• Knowledge Creation - Seen in both the final

product (a legacy book) and the knowledge of the tools and process which participants will acquire• Communities• Improve society - Benefits to various parties

Challenges & Implications:• Policies

o Micro-level: Liasing; Initial policy implications and relationship building

o Macro-level: Long-term policy making at multiple levels to help facilitate transfer of knowledge

• Operations and Managemento Working alongside ancillary groups

(especially, other civil society institutions)o "Politics"

Challenges & Implications:• Resources

o Financial and other Material Resourceso Environment• Context-Specific Design

o Participatory/Cooperative (Cross, 1982) and Value-sensitive approach (Friedman, 1996)

• Ethics and Provisionso Privacy issues that may come to bear before

or after the project is completeo Intellectual Property

Justification:• Personal Legacy Library service assists families

in expressing their end of life concerns in a safe and supported spaceo Invites introspection and facilitates meaning-

making• Librarians skillfully train and mentor healthcare

providers, patients and families in authoring their stories from beginning to end• Libraries make these "legacies" accessible by

setting aside space to share community stories

Anticipated Outcomes:• Patients: Provides patients with structured

opportunities to shape their own life legacies, explore their fears, mend relationships with their families, and resolve unsettled businesso Patients who express their feelings fair far

better in tolerating physical suffering • Families: Collaboratively create a book of

meaningful memories that can be a source of strength and comfort after their loved ones death• Society: Increase mortality awareness and

encourage the bereaved and volunteers to open up to their end-of-life concerns and discuss death and dying