Underserved Women with Breast Cancer at End of Life

Institution: University of California, San Francisco
Investigator(s): Shelley  Adler , Ph.D. - Denise  Wells ,  - Beverly  Burns , MS, BA, - Kendra  Stone ,  -
Award Cycle: 2007 (Cycle 13) Grant #: 13BB-1000 Award: $437,845
Award Type: CRC Full Research Award
Research Priorities
Disparities>Disparities: eliminating the unequal burden of breast cancer

This is a collaboration with: 13BB-1001 -

Initial Award Abstract (2007)
In the U.S., women with low incomes who are also ethnic minorities are diagnosed with breast cancer at relatively later stages and have lower rates of survival, but most end-of-life research has focused on white European American, middle class patients in hospitals or extended care facilities. What little is known about the end-of-life experience does not necessarily apply to underserved women dying from breast cancer. Based on our pilot CRC study of women with metastatic breast cancer, we developed a narrative intervention—the construction of an ethical will—to decrease suffering and distress among underserved women at the end of life.

This three-year qualitative and quantitative study will evaluate a narrative intervention—the construction of an ethical will. The goal of our intervention is to reinforce dying women’s sense of the meaning of their lives and ease concerns regarding death. An ethical will is an enduring document that expresses an individual’s values, beliefs, life lessons, hopes, love, and forgiveness in the form of a written legacy for loved ones.

We will enroll 120 women, ages 18 and over, who are currently receiving services from CMCC and who have metastatic breast cancer and a prognosis of less than one year to live. Participants will meet four times with a trained interviewer—each audio-recorded session will last approximately 45 minutes. Before the ethical will construction intervention, the interviewer will ask open-ended questions about the participant’s current quality of life and will also administer a series of quality-of-life measures. The four semi-structured interview guides emphasize the broad content areas from which we will, in partnership with each client, build an ethical will. The fourth interview is devoted to a review of the legacy document we will have prepared from transcripts of the three previous interviews—the interviewer will read the text and then work with the participant to edit it to reflect her wishes. After the intervention, the quantitative measures will be re-administered and the interviewer will ask a series of questions about the participant’s current quality of life, as well as the experience of constructing an ethical will and participating in the study. All methods have been pilot tested during our pilot CRC study.

Through qualitative content analysis of the interview data and interviewer field notes, we will develop “legacy documents” as well as a conceptual model of the experience and needs of end of life among underserved women with breast cancer.

Ethical wills are typically constructed by middle- and upper-class (and usually white European American) people to create a permanent legacy of their experiences and wishes. We believe that the experiences, life lessons, and hopes of multiethnic, underserved women with breast cancer are equally of value—and that the process of finding meaning by creating a permanent legacy has the potential to decrease suffering at the end of life. Symptoms relating to psychological distress and existential concerns may even be more prevalent than pain and other physical symptoms among women with metastatic breast cancer. Our pilot CRC participants agreed that issues such as meaning and purpose need to be acknowledged within the realm of quality end-of-life care, but we found few specific methods of addressing existential suffering at the end of life that had been developed and tested—noticeably absent are interventions that are appropriate for underserved women with breast cancer.

We challenge practices that separate the researcher from the “researched” and we promote the forging of a partnership between researchers and the community of interest. We have contributed equally to the creation and design of the proposed project in terms of the concept paper, this CRC proposal, and our long-term goals involving dissemination and implementation. Research team members from CMCC and UCSF will continue to share equally in the decision making process at our weekly team meetings and we will continue to work closely with the Community Advisory Board that we formed during the pilot CRC. As was the case with our pilot CRC, data will be owned jointly by CMCC and UCSF and all decisions regarding availability of data for analysis and dissemination of results through presentations and publications will be made by the full research team. Dr. Adler will continue to train all team members in the research methods used--CMCC research team members thus learn qualitative and mixed-method research techniques that will allow them to identify and investigate future questions of interest to the community.


Progress Report 1 (2008)
In the U.S., women with low incomes who are also ethnic minorities are diagnosed with breast cancer at relatively later stages and have lower rates of survival, but most end-of-life research has focused on white European American, middle class patients in hospitals or extended care facilities. What little is known about the end-of-life experience does not necessarily apply to underserved women dying from breast cancer. Based on our pilot CRC study of women with metastatic breast cancer, we developed a narrative intervention to decrease suffering and distress among underserved women at the end of life.

This three-year qualitative and quantitative study will evaluate a narrative intervention—the construction of an ethical will. An ethical will is an enduring document that expresses an individual’s values, beliefs, life lessons, hopes, love, and forgiveness in the form of a written legacy. The goal of our intervention is to reinforce dying women’s sense of the meaning of their lives and ease concerns regarding death.

We have begun enrolling a total of 120 women, ages 18 and over, who are currently receiving services from CMCC and who have metastatic breast cancer and a prognosis of less than one year to live. Participants meet four times with a trained interviewer—each audio-recorded session lasts approximately 45 minutes. Before the ethical will construction intervention, the interviewer asks open-ended questions about the participant’s current quality of life and also administers a series of quality-of-life measures. The first three semi-structured interview guides emphasize the broad content areas from which we, in partnership with each client, build an ethical will. The fourth interview is devoted to a review of the legacy document we prepare from transcripts of the three previous interviews—the interviewer reads the text and then works with the participant to edit it to reflect her wishes. After the intervention, the quantitative measures are re-administered and the interviewer asks a series of questions about the participant’s current quality of life, as well as the experience of constructing an ethical will and participating in the study. All methods were pilot tested during our pilot CRC study. Through qualitative content analysis of the interview data and interviewer field notes, we will develop “legacy documents” as well as a conceptual model of the experience and needs of end of life among underserved women with breast cancer.

Our full research team has been hired and trained, all instruments have been finalized, we have a randomized list of eligible patients, and our database system is operational. Our Manual of Procedures is current and all study protocols are in place. We have weekly core team meetings and monthly full team meetings (alternating sites between UCSF and CMCC). We have enhanced our community-research partnership and strongly feel that it is a model for conducting truly collaborative community-based participatory research. In addition to working together closely to achieve the study aims, the community members are contributing invaluable expertise in working with underserved women with breast cancer, in working collaboratively, and in establishing community trust and rapport; the research members are providing expertise in study protocols, training community members in qualitative research methods, and sharing strategies for data management and database design that are being incorporated into clinic procedures.