Underserved Women with Breast Cancer at End of Life

Institution: University of California, San Francisco
Investigator(s): Shelley Adler, Ph.D. - Beverly Burns, MS, BA, -
Award Cycle: 2005 (Cycle 11) Grant #: 11AB-1300 Award: $56,832
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 11AB-1301 -

Initial Award Abstract (2005)
Introduction: End-of-life care, in general, is extremely inadequate in the U.S. For low income, underserved women, this problem is more acute since the risk of recurrence and death is higher and their needs are less likely to be met. We will interview 10 women with metastatic breast cancer who are clients at CMCC, and also their physicians, CAM providers, and informal caregivers. We will focus on the women's values, needs, expectations, and concerns at end of life, as well as the communication that occurs between the clients and the providers. Our ultimate goal is to develop a model of patient-centered care from the pilot information we collect and to continue our work by applying for a full CRC to design and test an intervention to improve the quality of life at end of life for underserved women with metastatic breast cancer.

Research Questions:
    1. What are the beliefs, values, concerns, expectations, and goals about end of life from the viewpoints of underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?

    2. What communication about end-of-life issues takes place among underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?

Methods: This project consists of recruiting and interviewing 10 underserved women with metastatic breast cancer from among the clients at the community-based Charlotte Maxwell Complementary Clinic. The physician (oncologist), CAM provider, and informal caregiver that the client has selected as being most integral to her care will also be interviewed. Tapes of these interviews will be transcribed and their contents studied by the research team in order to develop an understanding of the needs of underserved women with metastatic breast cancer at end of life and how best to meet these needs.

Innovative Elements: The research team consists of a woman with cancer who was low-income at the time that she was diagnosed; two women who are healthcare providers for underserved women with breast cancer; and two researchers who have focused their work on underserved populations as well as women with breast cancer. We have formed a uniquely qualified team to study and work with an underserved community population.

Community Involvement: We will form a five-member community advisory committee of CMCC clients with breast cancer; and our long-term goal is to develop a patient-centered model of culturally-appropriate end-of-life care that takes into account that the burden of breast cancer is heavier for low income women, particularly low income women of color.

CRC Award: We chose to apply for funding for this research study through the pilot CRC mechanism because of our interest in conducting the project using a participatory research approach. The research questions were introduced by CMCC. CMCC and UCSF will work collaboratively through all the phases of the pilot—from instrument design through data collection and analysis, to dissemination of findings. In addition to the fact that our research team brings together women with a variety of clinical, research, and advocacy backgrounds, we will increase our awareness of participant and community concerns by working with a five-member advisory committee comprised of clients from the broader CMCC community. This community advisory committee will be involved in discussions of recruitment strategies, instrument development, dissemination of findings, and development of an intervention derived from pilot data.


Final Report (2006)
End-of-life care, in general, is extremely inadequate in the U.S. For low income, underserved women, this problem is more acute since the risk of recurrence and death is higher and their needs are less likely to be met.

The research questions were:
    1. what are the beliefs, values, concerns, expectations, and goals about end of life from the viewpoints of underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?

    2. What communication about end-of-life issues takes place among underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?

In order to answer our research questions, we recruited and interviewed 10 underserved women with metastatic breast cancer from among the clients at the community-based Charlotte Maxwell Complementary Clinic, as well as the physician (oncologist), CAM provider, and informal caregiver that the client selected as being most integral to her care. We developed and piloted semi-structured interview guides for patients (4 sessions), informal care givers (2 sessions), and CAM practitioners and physicians (1 session each). We focused on the women's values, needs, expectations, and concerns at end of life, as well as the communication that occurs between them and their healthcare providers. Next, we made digital audio recordings of these interviews and had them transcribed. Finally, our research team studied the contents of these interview transcripts in order to develop an understanding of the needs of underserved women with metastatic breast cancer at end of life and how best to meet these needs.

We have conducted a study that conforms to the requirements of a true community-based participatory research project: community members were involved in all phases of the research process, including identifying the issues of concern; developing assessment tools; collecting, analyzing, and interpreting data; determining how data could be used to inform actions to improve community health; designing, implementing, and evaluating interventions; and disseminating findings.

Analysis of the data is still ongoing, but a number of major and recurring themes in patients’ experiences at the end of life are:

Most CMCC clients have not made decisions or have not clarified their choices related care during end of life or their wishes for what should be done after they die.

Patients also were interested in working through the Five Wishes planning tool that is provided to all CMCC clients, although our experience is that only about 5% of CMCC clients actually fill out the form and use it. (Five Wishes is a document that provides a legally binding plan for the way an individual wishes to be cared for during serious illness.)

Our pilot CRC study established the strength and mutual benefit of our community-research collaboration and pointed to two areas of community interest regarding future work. We will (a) design a narrative method, an "ethical will" intended to improve the quality of CMCC clients' end of life by reducing suffering through enhancing meaning and (b) develop a community peer-based system to support women through the process of completing the Five Wishes booklet (a document that provides a legally binding plan for the way an individual wishes to be cared for during serious illness).


Symposium Abstract (2007)
This one-year qualitative pilot study examines the ways in which underserved women with metastatic breast cancer and the diverse individuals who provide their care approach and understand end-of-life issues. The burden of cancer morbidity and mortality is disproportionately borne by low-income women, particularly women of color, but the majority of end-of-life research in the United States to date has focused primarily on white European American, middle class patients in hospitals or extended care facilities. Symptoms relating to psychological distress and existential concerns are even more prevalent than pain and other physical symptoms among those with life-limiting conditions. This pilot study represents an equal partnership between UCSF and the Charlotte Maxwell Complementary Clinic (CMCC)—a state-licensed health clinic providing free complementary and alternative medicine (CAM) treatments to low-income women with cancer.

We will (a) design a narrative method, an “ethical will,” intended to improve the quality of CMCC clients’ end of life by reducing suffering through enhancing meaning and (b) develop a community peer-based system to support women through the process of completing a Five Wishes booklet (a document that provides a legally binding plan for the way an individual wishes to be cared for during serious illness).