Project Review by Loren Talbot, Director of Communications and Partnerships, INELDA
The convergence of shared values and strategic collaboration frequently serves as the catalyzer for impactful partnerships within C-TAC. Recently, the International End of Life Doula Association (INELDA) and The McElhattan Foundation came together to launch a pilot. The initiative—the development of an end-of-life doula project in Pittsburgh—highlights the pivotal role coalitions, like C-TAC, play in driving meaningful innovation opportunities in serious illness care.
Both organizations started working together after meeting at a C-TAC End-of-Life Doula Mixer—an event designed to cultivate dialogue and connection among Doulas and organizations interested in learning more about the work. At this event, INELDA and the McElhattan Foundation identified overlapping goals: increasing access to compassionate, personalized end-of-life support and creating systemic change in how communities experience death and dying.
Introduction and Background
Can you describe the inception of the collaboration between INELDA and McElhattan for this project?
INELDA and McElhattan were brought together through a C-TAC Doula Mixer held in May of 2023. INELDA had already identified McElhattan as a possible philanthropic partner through our own research. It was so exciting for us to learn that we were both members of the C-TAC community and that we shared several overarching goals.
Project Details
What specific needs in Pittsburgh does this doula project aim to address?
Community organizations, the city and regional governments, and individual efforts to support and reduce homelessness in Pittsburgh have understandably concentrated on housing, food services, health care, social services, and mental and substance abuse treatment. Admittedly all are major concerns to be addressed. But even when supported—terminal illness continues.
In the Recommendations for the End-of-Life Care for People Experiencing Homelessness report developed by the Health Care for the Homeless Clinicians Network in 2018, it was noted “Some people living in homelessness experience sudden deaths on the streets from exposure or violences but most death are the result of illness or chronic health conditions. The report went on to say, “There are high mortality rates among people experiencing homelessness who often die of conditions that are more easily treated in people with stable housing, such as pneumonia, influenza, HIV/AIDS, liver disease, renal failure, cold-related injuries, and cardiac arrhythmias (Hwang et al., 2001). Because individuals lack access to health care for chronic health conditions, many people living in homelessness also die because of heart disease, cancer, lung disease, and other chronic conditions.”
Organizations providing food, shelter, harm reduction, and transitional housing are under-resourced and not always formally trained to provide end-of-life care. There is no system in place outside of traditional medical settings such as emergency rooms and hospitals when individuals are too ill to manage with more customary physical support. The hospitals assess for acute conditions and once determined to no longer be “acute” they discharge to “home”.
This may result in a temporary admission to a rehab or care facility however patients can leave against medical advice. Once the patient signs the paperwork acknowledging they have chosen to leave, they can. Many will choose to rejoin their encampments, the familiarity of street companions if they have them, their beloved animals, and their belongings if they still exist. However, when on the streets individuals likely do not return or have access to an environment where they can be provided end of life care, oversight, or knowledgeable compassion in dying.
In response to address the needs of end-of-life care for people experiencing homelessness, INELDA and the McElhattan Foundation partnered to educate and offer support for care providers and other stakeholders addressing the needs of people experiencing homelessness. With the support of the foundation, INELDA has partnered with Bridge to the Mountains, a local partner serving people experiencing homelessness through street outreach, resource coordination, harm reduction, and connection to care. Our partnership engages those directly impacted with lived experience to inform best-practice approaches to end of life care.
How does the project define and implement the role of doulas in the community setting?
The project seeks to educate community care providers with INELDA Doula’s Approach developed for those directly supporting the unhoused via an open educator-led training. Pittsburgh has a deeply connected community of care providers, hospitals, street teams, county agencies, respite centers, and shelters that coordinate care together. This group meets every Monday and communicates regularly throughout the day. INELDA will be offering our training to all who are interested in integrating an end-of-life doula approach into all these spaces.
What are the core components of the training programs for the doulas involved in this initiative?
The core components of this training program are to:
Create a shared language, understanding, and opportunity for people in hospice, palliative care, and other disciplines serving people experiencing homelessness (PEH) at end-of-life to include the voices of the people being served and respond more effectively to unhoused populations with terminal illness in ways they need, will accept, and honors their autonomy.
Create a best practice training for supporting PEH who are terminally ill with needed access to care and support that will be replicable for other communities and providers of services.
Increase access to compassionate and desirable end-of-life care for PEH that compassionately, in a trauma informed approach, assists patients in clarifying their priorities for making treatment decisions and establishing goals of care that empowers their sense of control.
Impact and Outcomes
Any early success or stories to share about the project?
INELDA had the opportunity to partner with Bridge and our team lead, Julie Armagost a Resource Coordinator and Harm Reduction Specialist has completed INELDA’s doula training. She has offered insights on how to adjust our current curriculum to address the needs of those unhoused and we will continue collaborating on the future curriculum together. Julie has supported individuals at the end of life by coordinating care and offering emotional support in the past, however they shared that after our training they are now bringing new skills into the field when interacting with individuals. Additionally, our first site visits facilitated by Bridge Outreach led to dynamic and agreeable conversations with care providers, respite center staff, and street team medical teams. We have also connected with the leadership at the Street Medicine Institute and attended their annual conference where we were able to advocate for our work to the larger community and country.
How will the effectiveness of the doula services be measured or evaluated?
The project is establishing a best practice model for supporting people experiencing homelessness in the city of Pittsburgh. We will measure our project success by factors including. # participating organizations, # directly impacted participants (PEH), # staff/volunteers, professionals trained.
Training curriculum will be developed and offered to institutions serving PEH at the end of life. The program will measure increase in PEH participation with program teams including the following:
- a) Increase in participant documentation of advanced care directives
- b) Tracking documentation of patient decisions regarding EOL directives, living will and DNR
- c) Tracking documentation goals of care based on patient’s wishes
- d) Tracking discussion documentation of after-death services and care of remains.
Personal Stories
Any stories to share from on the ground folks or doulas that will be involved with the project?
We have been documenting PEH care providers stories around death on the streets to utilize in the training for our prework and throughout our training. These stories have shared lessons about the deep emotional connection street teams have to the people they are providing support for. Pittsburgh is an amazing city that has deeply committed to providing the best access to care possible. In INELDA’s short three-day visit there, we were able to bear witness to the direct care given from wound support to new tents for safe sleeping. Yet everyone we spoke with agrees that there is a gap when it comes to terminal illness and sudden death on the street. These gaps range from hospice access while rough sleeping, to lack of hospice beds in the local respite center, to lack of advanced care directives, and knowing who in the community would be best to inform if death was imminent. Pittsburgh, due to it’s deeply coordinated care system, is ripe to adopt an approach to close the loop for those dying.
Future Directions
What are the end goals for this project?
The results of the project will be to create a training for providers of services for PEH that will educate about end-of-life care needs for terminally ill unsheltered clients. Whether they open their organizations to include services to people who are terminally ill or not, the increased knowledge among their staff and volunteers will benefit the unhoused community through increased awareness, interventions, referrals, and increased visibility on the necessity for this support. We have realized along the way that it is necessary to teach this approach directly and INELDA is committed to offering our training multiple times.
Are there plans to expand the doula services to other areas beyond Pittsburgh? Or potentially replicate the model elsewhere?
Yes, we have already piqued the interest of street medicine teams and doula collaboratives. We have hopes to present our work in the near future at conferences dedicated to those service providers that are supporting the unhoused. We see this work spreading widely as the demand is clear.
