A Guide to Being Mortal sounds more like a Broadway play than a research project but alas it is
not, and it has local ties. Ariadne Labs and the Conversation Project have developed the “What
Matters to Me Workbook” for seriously ill patients and their caregivers. The Conversation
Project is an initiative of the Institute for Healthcare Improvement, a not-for-profit organization
that is a leader in health and health care improvement worldwide.
Living Well in Wabash County CoA, Inc. in Wabash Indiana stepped up to be a community
partner with the researchers from Ariadne Labs, a joint center of innovation at the Brigham &
Women’s Hospital and the Harvard T. H. Chan School of Public Health studying the
effectiveness of the Workbook.
The Workbook’s purpose is to help patients and caregivers prepare to talk about their goals,
values, and preferences for care, especially with their health care team. The aim of this project is
to ensure that the “What Matters to Me Workbook” is as useful, easy-to-use, acceptable, and
harm-free as it can be to people regardless of age, gender, education, race, etc. The Cambria
Health Care Foundation is sponsoring the work.
As a community contact for the project, Living Well in Wabash County agreed to use their
community connections to seek adults, eighteen and older, who are living with a serious or
terminal illness and who have a caregiver (family member, friend, health care proxy) who is
interested in participating with them. Since the goal of the Workbook is to foster a useful
conversation about values, goals, and preferences, the research team needs patients and
caregivers to participate together.
The patient and their caregiver will be asked to complete the “What Matters to Me Workbook,”
complete a survey, and participate in an interview about their experience using the Workbook.
The interview will be recorded, transcribed, and analyzed for themes pertinent to the study.
They will be interviewed alone or with their partner by 1 to 2 research staff.
The Workbook can be completed in less than an hour, but participants may wish to spend more
time thinking about their answers. The interview will take no longer than one hour of their time.
The survey can be completed online in fifteen minutes or less but will take longer if it is done
over the phone.
The researchers hope that this work will contribute to knowledge regarding serious illness
conversations. This is an opportunity for participants and their caregivers to develop familiarity
and comfort with advance care planning questions and to be better prepared for future health
decisions.
Participation in the study is completely voluntary. Participants are free to withdraw at any time
without consequences.
The primary risk to the subjects will be some level of emotional discomfort in discussing topics
related to their goals, values, and preferences for care if they were to get sicker. There is also a
risk of breach of confidentiality or privacy. The study team takes confidentiality and privacy
very seriously and use several layers of security to minimize those risks. An example of this is
their use of code numbers instead of real names and using HIPAA compliant communication and
storage.
Living Well in Wabash County CoA is asking people to spread the word to let people they know,
such as friends, family, and co-workers, about the study. Anyone interested or would like more
information can contact info@livingwellinwabashcounty.org or call (260) 563-4475 to speak to
the Living Well in Wabash County CoA CEO, Beverly Ferry.