Research Projects
Life’s End Institute’s major research projects, comprising the Community Profile are:
- Community Survey
- Clinical Experience Study
- Family Bereavement Interviews
- Community Focus Groups
- Patient and Family Caregiver Perspective
- Native American Needs Assessment
- Pain as the Fifth Vital Sign Study
- Physician Experiences and Attitudes Survey
- Faith Community Leader Survey
- Faith Community Member Survey
- Network and Systems Analysis
- Wise Counsel Survey
Focus: The Community Survey explores attitudes, expectations, and experiences with the dying process. The survey tool gathers basic demographic information as well as data related to advance care planning, knowledge of hospice services, attitudes about pain and symptom management, spiritual beliefs and customs related to death and dying, preferred medical practices, financial concerns, and social support systems.
Tool: The seventy-three item survey incorporates modified questions from the Corriveau-Kelly Death Anxiety Scale which is built upon Templer’s Death Anxiety Scale.
Method(s): Random-sample mail-out.
Notes: Originally the Institute administered this survey in Missoula County, MT; Bannock County, ID; and Albany County, WY. It has since been used in several communities nationwide and has been adapted for statewide use in North Carolina, Nebraska, Massachusetts and other states.
Clinical Experience Study [ back to top ]
Focus: Exploration of the experiences of dying and bereavement from multiple perspectives.
Tool(s): After-Death Interview with surviving family members, Medical Chart Review, and case-specific Physician Surveys.
Method(s): Interviews, survey, medical chart review
Notes: The Clinical Experience Study resulted in a thorough exploration of the dying experience by triangulating between physician and surviving family member perspectives and medical documentation evidence. The article resulting from this study, “Next of Kin Perspective on the Comprehensive Experience of End-of-Life Care in a Community Setting,” has been submitted for publication to the Journal of Pain and Symptom Management.
Family Bereavement Interviews [ back to top ]
Focus: Exploration of the lived experience of caregiving and caregivers’ perspectives on dying family members’ quality of life.
Tool: Schedule of specific, open-ended interview questions
Method: Semi-structured interviews
Notes: The Family Bereavement Study will be published as the full-length book, A Death in the Family: In Our Own Words, by Helen Lee, RN, Ira Byock, MD, and Barbara Spring, PhD, due out in 2005 from Georgetown University Press. Data from these interviews revealing prevalent confusion about advance care planning terms and procedures was used by the Advance Care Planning Task Force to create the My Choices information packet and advance directive form.
Community Focus Groups [ back to top ]
Focus: Focus Group participants shared their significant experiences of a loved one in the dying process with guided group discussion focused on identifying the ways in which community support could have improved those experiences.
Tool: Schedule of open-ended questions to structure group discussion
Method: Facilitated small group discussion of groups recruited from pre-existing affiliations including: allied health professionals, providers of complementary care, fire fighters, funeral directors, faith communities, Native American and Hmong community members, developmentally disabled individuals, and low income clients of a health clinic.
Notes: One focus group, constituted of a longstanding men’s poker group, was featured in the documentary film, Final Blessings.
Patient and Family Caregiver Perspective [ back to top ]
Focus: The experiences of patients with life-limiting illness and those of their family caregivers during patients’ last months of life.
Tool: No standardized tool
Method: Ethnographic study including nine months of site visits, audio-taped conversations and field notes.
Notes: This research resulted in the book, A Few Months to Live: Different Paths to Life’s End, by Jana Stanton, PhD, Roger Shuy, PhD and Ira Byock, MD published by Georgetown University Press, 2001.
Native American Needs Assessment [ back to top ]
Focus: Native American experiences with dying and grief
Tool: Schedule of open-ended questions to structured group discussion
Method: Focus groups in the tradition of the Native American Talking Circle
Notes: This research was led by locally well-known and respected Blackfoot elder, Emily Matt Salois, MSW. Fifty-six people representing seventeen tribes participated in the Talking Circles.
Physicians’ Survey [ back to top ]
Focus: Physicians’ experiences regarding end-of-life care
Tool: Survey
Method: Mailed to all practicing physicians in Missoula County
Notes: Data from this survey revealed that Missoula County physicians consider the greatest obstacles to care of the dying to be lack of time, followed by difficulty in coordinating care, and symptom management.
Faith Community Leader Survey [ back to top ]
Focus: Faith Community Leaders values about end-of-life care, professional preparedness for dealing with end-of-life subjects and practice, and comfort with different end-of-life care practices.
Tool: Survey
Method: Mailed to all faith community leaders in Missoula County.
Notes: This survey was developed with the advice of our Faith Community Task Force. Results from this study were published in a paper “Spiritual Care at the End of Life, by Kaye Norris, PhD; Gretchen Strohmaier, MDiv; Charles Asp, PhD; and Ira Byock, MD, Health Progress, July-August 2004.
Faith Community Member Survey [ back to top ]
Focus: Faith Community Members perceptions of end-of-life care provided through their faith communities and perceptions of the care practices that would be important to them if they were seriously ill, dying, or bereaved.
Tool: Survey
Method: Randomly selected members from membership lists of 15 Missoula County faith communities.
Notes: This survey was developed with the advice of our Faith Community Task Force. Twelve of the fifteen faith communities that participated in this research used the results to create programs or ministries for their congregants.
Network and Systems Analysis [ back to top ]
Focus: Exploration of the use of, and connections between, different Missoula County services, including: hospitals, physicians, social service organizations, funeral and bereavement organizations, long-term care facilities, insurance organizations, and other specialized services
Tools: Survey, schedule of interview questions
Methods: The Network and Systems Analysis combined several research methods for a comprehensive review of how services are used in Missoula County, including: facility visits, formal surveys, and extensive interviews.
Notes: The Network and Systems Analysis provided vital information on the availability and continuity of resources for people who are dying and their families.
Wise Counsel Survey [ back to top ]
Focus: Attorney and legal assistant advance care planning practices
Tools: Attorney survey, legal assistant survey
Methods: Mailed to all attorneys practicing in Missoula County as well as numerous legal assistants
Notes: The Wise Counsel Survey was part of a collaboration between the Institute and the State Bar of Montana, the University of Montana School of Law, and the Montana Association of Legal Assistants. Data from the Wise Counsel Survey resulted in a Continuing Legal Education seminar, developed by the Institute in conjunction with the Montana Bar Association.