Pitt Innovation Challenge 2021
- Black patients with cancer experience shorter survival and disproportionate burdens of isolation, pain, financial toxicity, and symptom distress during advanced cancer care and low-value, high-cost, aggressive medical interventions at the end-of-life.
- Palliative and hospice care are not readily available to Black patients and families, leaving them without necessary support and practical assistance.
- We propose a non-medical doula model to extend and reimagine supportive care and end-of-life care in the Black community.
- DouLAS-AC will allow us to pilot a program of support, practical assistance, legacy building and comfort for bereaved families.
Metastatic breast cancer is a disease with multiple treatment options particularly difficult for Black women living in Pittsburgh, a highly racially segregated city. Pittsburgh has been rated the second worst city in the nation for quality of life among Black women.
Racial disparities in food, housing, transportation, and medication assistance are often exacerbated by advanced cancer and overwhelm even the most supportive current assistance capabilities of the medical model. Black patients and families are more likely to choose aggressive treatment at the end-of-life and less likely to discuss end-of-life plans and utilize palliative care and hospice services leaving the patient and family without important resources and support.
Despite implementation of a weekly program at Magee Women’s Hospital that successfully addressed the needs of White women with metastatic breast cancer, Black women continued to report high symptom burden, reduced conversations regarding goals of care, and receive aggressive treatment close to death.
In the past, descriptive research has outlined the problem and interventions have typically aimed to increase utilization of palliative care and hospice services in the black community rather than to reimagine care that is specifically-designed to meet the needs of this population.
Best known in the context of labor and delivery, the term “doula” is of Greek origin meaning “woman caregiver.”
For practical purposes, a doula is a trained non-medical professional outside of the hospital staff and social circle, offering an individual physical, emotional, and informational support through a significant health-related experience.
DouLAS-AC adapts the training curriculum for advanced cancer to meet Black women in their communities during the arduous journey of metastatic breast cancer care.
The community-based, trained companion (doula) provides the patient with: 1) emotional support during advanced cancer; 2) explore life meaning and create legacy; 3) support for practical illness needs; and 4) support and connection for the bereaving family and friends.
The role of a doula in end-of-life care is a developing field, not yet systematically tested for effectiveness and acceptability in the Black community. It is uniquely different from hospital-based support in its breadth and community presence, and different from hospice-based care in that it meets women much earlier than at the end of active cancer treatment.
Path to Impact Plan
The plan for sustained funding and reimbursement is being developed through collaborations with philanthropic resources, implementation scientists, and third-party reimbursement experts.
PInCh funding will allow us to develop evidence for third party reimbursement, specifically, Medicaid’s Community-Based Care Management Program dollars that funds community-based programs supportive of health, such as birth doulas.
Meetings held with UPMC Health Plan and the Magee Doula (Birth) program to discuss sustainability informed our choice of measured outcomes and future funding.
PInCh funding will also allow us to develop a “toolkit” including program curriculum, patient and family protocols, and materials outlining steps for additional end-of-life support programs with other communities.
Pilot data from this project will be used to scale this program to other communities and to those with other types of cancer.
- Margaret Rosenzweig, PhD (Pitt Distinguished Professor of Nursing) is a nurse practitioner and well-funded expert in racial disparities in the delivery of cancer care, developing cancer care curricula and communication skills to care providers.
- Internal support team: Robert (Bob) Arnold, MD (UPMC) is Director the Chief Medical Officer for the Palliative and Supportive Institute. Tanisha Bowman, MSW, (UPMC) is a Supportive and Palliative Care Social Worker and end-of-life doula. Adam Brufsky, MD (UPMC) is the Co-Director for the Comprehensive Breast Cancer Center with expertise in metastatic breast cancer. Valire Copeland, PhD (Pitt School of Social Work) is a Professor focused on racial disparities, social determinants of health, and community outreach.
- External support team: Jamie Eaddy, D. Min (International End of Life Doula Association) will be the liaison with the DouLAS-AC program. Daren Ellerbee, MS is the Director of the Community Engagement Center in Homewood. Cheryl Harris is the African American Cancer Support Group Facilitator at the Cancer Caring Center.
Frequently Asked Questions
- What do we know about caregivers, their health, and their grief within the Black community? Broadly speaking, Black people experience grief in a unique manner which incorporates historical racism. Black individuals experience death of family, friends, and neighbors earlier in life than White families, and more frequently than other race and ethnic groups the United States yet are less likely to seek mental health care.
- What will the Doula Program look like? The Doula program will incorporate emotional support, practical assistance, legacy building activities and support for families. A community woman will be hired to be the Doula. A navigator for behind-the-scenes assistance will also be hired. The curriculum and protocols for patient engagement will be developed through collaborative work.
- How is the DouLAS-AC curriculum different from other end-of-life doula curriculums? The DouLAS-AC curriculum will incorporate information specific to the needs of individuals with advanced cancer (e.g., prescription assistance, symptom distress, uncertainty regarding diagnosis). Importantly, the DouLAS-AC curriculum seeks to tailor the curriculum to the unique concerns and needs of the Black community.