Increasing Palliative Care Accessibility through Grassroots Community Collaborations and Teamwork

The palliative care and elder care snapshot in our upstate New York region of Saratoga County reveal some disturbing trends.

As in many counties in the Northeast, the older demographic is growing rapidly—as is the prevalence of many chronic progressive illnesses.^[1][2] We also see an uptick in social trends related to isolation and loneliness, COVID-related adjustment issues, the alarming and widespread impact of social determinants of health, caregiver exhaustion, and ongoing issues with health equity and health disparities.^[3]

Two revealing population statistics are that Saratoga County has the 28th widest income disparity of the more than 3,000 counties in the United States, and the highest number of mobile home parks in the state of New York.^[4][5] These data include many of our elders with a serious illness diagnosis in the throes of adverse social circumstances. Invariably, these older adults want to stay at home, age in place, and somehow navigate the transitions they are faced with—while maintaining a quality of life that they find acceptable.

Palliative care is accessible in our county, but it is typically reserved for late-stage patients in inpatient settings. Outpatient palliative care is available via physician referral to a palliative care physician who makes home visits, or one of the nurse practitioner palliative care services now available through local health systems.

Those of us who have looked at the earlier-mentioned environmental scan through the lens of seniors living with serious illness yearn for a wider palliative care reach. One that is outside of hospitals, available wherever the patient lives, and accessible from the point of initial diagnosis―while integrating attention to the myriad of social determinants at play.

In response, last year, the Senior Life Transition Program was born. Retired and semi-retired clinical colleagues from the area came forward to meet this burgeoning community need. In addition, the Saratoga Senior Center’s large cohort of volunteers in its Community Connections program assists with specific needs (e.g., transportation, food delivery, respite care, etc.).

Our program, while not a palliative care program per se, aspires to apply the core essentials of palliative care throughout the entire community. Particularly, we serve the most vulnerable, hard-to-reach patients and their caregivers, many of whom live entirely alone. We see the core essentials as the eight domains of palliative care listed in the NCP Guidelines, rigorous attention to quality of life and the relief of suffering, interdisciplinary teamwork, and laser-like attention to the individual human being under care. Our simple goal is to empower seriously ill seniors to navigate the transitions they face as they age in place. We believe that this grassroots and bottom-up service has much to offer now and in the future, and could be replicated in other communities.

Our model relies on generalists (with referrals to palliative care specialists as needed), a broad and flexible labor pool, and significant collaboration with health, social services, and local support networks (churches, emergency responders, volunteer fire companies, senior citizen centers, etc.). Most significantly, this requires close partnership with the array of primary care clinics that dot the land. They are largely office-based and welcome a strong, competent, adjunctive community arm.

The Senior Life Transitions Program is based in the Saratoga Senior Center, which is a very support services-oriented, independent, non-profit senior center. It has a long history of fostering independence and wellness for persons aged 50 and over, including the extensive use of trained volunteers. It is a great fit for a community-wide, volunteer-intensive initiative.^[6]

Our program does outreach through senior center hard copy and e-blast newsletters, internet and print media communications, social media, and personal contacts to primary care practices, churches, and other service agencies. In these communications, we stress that we are an added layer of support based on palliative care principles and that we do not duplicate other services (e.g., specialist palliative care). We receive referrals from walk-ins, senior center members, primary care practices, churches, the internet, and other service agencies we are allied with.

Once we receive a referral, an in-person assessment takes place with the older adult and caregiver (if there is one). This is followed by actionable recommendations made to the patient and to the primary care staff, usually by the RN care manager. Following discussion and feedback, a work plan is established and implemented, with closure occurring when the work plan is completed (1-4 months). After closure, the patient can continue to contact the senior center for follow-up services if needed.

Work plan areas fall into three categories:

1. Follow-up by the primary care office directly, including medicines, orders for CHHA/home care/DME, behavioral health intervention, MOLST, etc.
2. Collaborative referral to other agencies, such as the County Office of Aging, Catholic Charities, Housing Assistance programs, Medicaid Waiver programs, HEAP, SNAP, Adult Day Care, EMS check-in, etc.
3. Direct assistance provided by our program, including coaching/navigation, respite care, adjustment support, home safety and home repair, advance directives, FICA spiritual assessment, working through issues related to the social determinants at play, one-off services related to transportation and nutrition, accessing life alerts, coordination of all the above, etc.

Our successes to date have included, but are not limited to: very close relationships established with multiple primary care practices and voluntary agencies; recruitment of additional volunteers; greater widespread understanding and acceptance of palliative care; significant impact on the lives of our patients; and attracting the attention of local health systems and Medicare Advantage payers. One-third of our first fifty patients have been live-alone elders facing serious illness and wanting to stay at home. Success with these patients has meant diminishing the negative impacts of social isolation and social determinants, mobilizing local supports close to their homes, assigning volunteer support and more formal home care support, and reducing preventable ER visits and hospitalizations.

1. Low budget, available, mission-oriented labor pool: Skilled professionals/volunteers (many retired) who are willing to serve. Skills needed include assessment across the eight domains of palliative care; coaching/navigation ability; intervention in one or more of the eight domain categories; communication around goals of care and what matters most; coordination skills related to health care, government services, and non-profit and faith-based entities. Experience in hospice, palliative care, as a community health worker, behavioral health services, and/or aging services are all helpful.
2. Timing and relevance: Awareness of palliative care as an added layer of support relevant in home and community settings with elderly people facing social isolation and social determinants.
3. Positioning, leverage, community adjunct for office-based practices: Familiarity and engagement with primary care practices, and with community service agencies.
4. Compatible host agency and the ability to spread overhead: Familiarity and engagement with primary care practices, and with community service agencies
5. Initial funding and sustainability potential: Start-up sponsors and rolling grants pool
6. Knowledge base and proven commitment: Experienced leadership at the organizational and programmatic level; familiarity with palliative care principles, guidelines, and standards

Our current core volunteers include a physician experienced in palliative care, retired nurses and nurse practitioners, a retired behavioral health therapist, social workers, a certified patient advocate, an aging life specialist, and more. In addition to our Senior Life Transitions Program volunteers, we utilize the cadre of volunteers trained by the Saratoga Senior Center to address specific social determinants of health (transportation, food, energy, social isolation, caregiver respite, etc.).

It is our observation now this approach incorporates many aspects of prevention—including the prevention of further erosion of personhood and health status due to the social determinants of health. Many aspects of social and behavioral factors lead to worsening health. For example, isolation and loneliness generate significant anxiety, depression, or substance abuse. Anecdotally, we also see that earlier application of palliative care is resulting in fewer visits to the emergency department and a reduction in preventable hospitalizations.

When starting with our generalists, the transition to medically appropriate specialist palliative care and/or hospice is much smoother. Because our model broadens access to health services, it prevents worsening health equity issues and can assist in addressing health disparities. Finally, earlier attention to advance directives (both the technical components and the discussion processes) is preventive of much-unintended suffering. Each of these aspects of prevention merits its own blog!

Our program is a grassroots learning group committed to quality improvement. We intend to use the two new PRO-PMs for palliative care—whether patients feel heard and understood, and whether they get the help they need with their pain.^[7] We are also designing an ongoing improvement process with a new skilled volunteer, who is a retired physician who has palliative care experience, research credentials, previous related published material, and has served as a county public health director.

Yes, future insurance reimbursement may be in store. At least one local Medicare Advantage payer is planning benefit expansion or community service funding to include the Senior Life Transitions program. It is more likely (and maybe more timely and desirable) to have the flexibility to adapt our model as community needs evolve, and with emergent learnings, as we apply the principles of palliative care earlier and in broad community settings. For that, the business plan will vary with the context of each community over time. Key components of that plan will include maintaining a volunteer-intensive focus, as well as an array of rolling-funding streams to cover the modest costs of a largely volunteer-driven model, including but not limited to:

• Ongoing and new financial sponsors, whether individual, organizational, corporate
• Rolling grants
• Funded collaborative initiatives with like-minded entities, based on key identified community needs and themes (e.g. COVID impacts; rise in dementia-related challenges; lack of affordable housing; homelessness; poverty; health disparities; health literacy challenges, transportation and food deserts, energy impacts; home safety needs; etc.)
• Fees or suggested donations
• Grants/co-benefits with health systems and health insurance companies based on Memoranda of Understanding (we currently receive financial support from two local health systems)
  • These systems are interested in community support that reduces both ED visits and hospitalizations
  • Easing the burden on primary care practices is also a factor
  • No measures of success have been agreed to yet at this early stage, but they are being jointly planned
• A major community special fundraising event
• "Friends Program" for annual giving

Our vision for the future is a caring community that capably supports and empowers the full human being as they experience serious illness, applying the traditional values and competencies of palliative care in ways that respond to widespread community need. This support and empowerment combine specialist palliative care with the major social factors in play in a unifying, coordinated, generalist approach to aging in place with a serious illness. Furthermore, this caring community is able to ameliorate social determinants of health, not just for the patient, but also for the community and its future—in a broadly preventive approach to serious illness and public health.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.