Navigating the Frontier: Experts Discuss Challenges and Innovations in Rural Palliative Care
The landscape of palliative care in rural America presents a unique set of challenges and opportunities, demanding innovative approaches to ensure equitable access to high-quality end-of-life care. A recent discussion featuring leading experts in the field, hosted by the GeriPal Podcast, shed light on the critical issues facing these underserved communities and the creative solutions being implemented. The conversation highlighted the resilience, resourcefulness, and deeply personal nature of palliative care delivery in areas often characterized by vast distances, limited infrastructure, and distinct cultural contexts.
The episode brought together a distinguished panel: Dr. Jeanie Youngwerth, a palliative care physician at the University of Colorado; Adie Goldberg, a palliative care social worker and clinical coordinator for the Washington State Rural Palliative Care Initiative; Dr. Karl Bezak, a palliative care physician at the University of Pittsburgh and UPMC; and Gregg Vandekieft, a palliative care physician and medical director of the Washington State Rural Palliative Care Initiative. Their collective expertise offered a comprehensive view of the complexities and triumphs of rural palliative care.
Motivations Driving Rural Palliative Care Advocates
The journey into rural palliative care often stems from personal experiences and a deep-seated commitment to addressing healthcare disparities. Adie Goldberg shared how witnessing the derailment of discharge plans for patients traveling from distant rural areas to a tertiary hospital in Oregon ignited her passion. Her PhD dissertation focused on the seamless delivery of palliative care in rural Washington and Oregon, driven by a personal connection to rural communities.
Dr. Jeanie Youngwerth described her entry into rural palliative care as an "opportunity" that arose when rural Colorado colleagues sought collaboration. Her enthusiasm for innovation and a desire to help colleagues and patients access palliative care in mountainous regions fueled her involvement.
Dr. Karl Bezak’s path was facilitated by meeting Dr. Bob Arnold, who was spearheading a project using artificial intelligence to identify patients in rural western Pennsylvania. This initial exposure to tele-palliative care in rural settings solidified his commitment to advancing equity and access in his specialty.
Gregg Vandekieft, who grew up in rural Iowa and practiced in rural Washington, noted that the work "found him" when he was approached by the Washington Department of Health to lead a rural palliative care initiative. His decade-long involvement underscores a sustained dedication to this specialized field.
The Unique Nature of Rural Palliative Care
A central theme of the discussion was the distinctiveness of rural palliative care compared to its urban counterpart. Adie Goldberg likened rural healthcare providers to "MacGyvers," adept at cobbling together necessary resources in their communities. She emphasized that the lack of readily available services in urban settings necessitates a more adaptable and integrated approach, where professionals often step outside traditional roles.
Gregg Vandekieft echoed this sentiment, highlighting the variability of "champions" in rural palliative care programs. These champions, whether nurses, family physicians, pharmacists, or community health workers, are crucial due to their intimate knowledge of the community and its resources. This resourcefulness and resilience are defining characteristics of rural palliative care.
Dr. Karl Bezak further elaborated that rural palliative care is the "epitome of personalized medicine," emphasizing the deep personal connections and local knowledge that underpin its effectiveness. While telehealth plays a significant role, the success of these programs hinges on robust connections with local champions.
Addressing the Rural Health Equity Conundrum
The conversation delved into the critical issue of equity, with Dr. Bezak asserting that rural palliative care is fundamentally an equity issue. Adie Goldberg passionately argued that healthcare access should not be dictated by zip code, pointing out that rural communities are often underserved in various ways, including access to palliative care, timely referrals, and even basic resources. Factors such as disproportionate numbers of Medicare and Medicaid patients, aging populations, and educational disparities exacerbate these inequities. The cost and logistical challenges of accessing specialists, even for a one-hour drive, present significant barriers.
Gregg Vandekieft underscored this point by referencing "despair in rural communities," which extends beyond palliative care to encompass broader access to resources and contributes to higher mortality and morbidity rates compared to urban settings. He noted the alarming statistics of higher suicide rates, mortality, and disability rates, coupled with lower socioeconomic status, affecting approximately one in five Americans who live in rural areas.
Bridging the Gap: Urban Expertise and Rural Realities
A significant challenge discussed was the potential disconnect between urban-developed palliative care models and the realities of rural communities. Alex Smith, a host of the podcast, posed a philosophical question about imposing urban standards on rural settings, referencing the work of Dr. Paul Farmer, who advocated for universal access to the highest standard of care. While the ideal is to provide the best possible care everywhere, the practical implementation in rural areas requires a nuanced approach.
Adie Goldberg stressed the importance of "humility" when engaging with rural communities, emphasizing that local residents possess a "PhD in their community." The goal is not to lower standards but to adapt the delivery of care, potentially involving different healthcare professionals or community members as vital team members.
Gregg Vandekieft described a structured approach for new communities joining the Washington State Rural Palliative Care Initiative: an asset and gap analysis. This process identifies existing community strengths and then leverages virtual support, including online case consultations and open office hours, to provide specialty palliative care expertise. This hybrid model ensures that even without on-site specialists, rural communities can access the knowledge and support needed.
Dr. Karl Bezak advocated for a "bedside up" approach, prioritizing community involvement and local knowledge in developing palliative care programs. He stressed that communities need a significant voice at the table for these initiatives to succeed. Dr. Youngwerth added that successful programs require local integration, becoming part of the community’s existing framework rather than imposing an external model. This integration fosters buy-in, sustainability, and respects the rural preference for care provided by their own.
Overcoming the Challenges: Infrastructure and Access
The discussion highlighted persistent challenges, particularly concerning infrastructure and access. Dr. Youngwerth identified reaching patients in their homes as a primary hurdle, citing the impracticality of long travel distances and the significant "digital divide" that impedes telehealth adoption due to limited internet and cell service access.
Gregg Vandekieft illustrated this with an example of a community using satellite phones for telehealth consultations in areas with poor connectivity. He also emphasized the considerable "windshield time" required for home visits, noting a "hospice desert" where a lack of local staffing prevented access to hospice services for an extended period, despite a certificate of need.
Dr. Bezak pointed to transitions of care as a significant challenge. While tele-palliative care services can extend across multiple hospitals, ensuring follow-up care after hospital discharge remains difficult. The digital divide and lack of robust infrastructure hinder patients’ ability to access outpatient appointments, even via telehealth, leading to potential loss of follow-up care.
Adie Goldberg touched upon the dual nature of rural social fabric. While strong community ties can be an asset, many individuals, particularly veterans, experience profound social isolation and loneliness. This can make engaging them with healthcare services, especially when they are accustomed to self-reliance, a complex ethical consideration. She also raised the crucial question of how urban palliative care providers can create discharge plans that are truly accessible and effective for rural patients, given the limitations of resources and availability in their home communities.
Dr. Bezak acknowledged that there isn’t a single answer to this challenge, emphasizing the need for a "team-based collaborative care" approach. He stressed that the responsibility for successful discharge planning cannot fall solely on the shoulders of inpatient providers.
Innovations and Promising Initiatives
Despite the challenges, innovative solutions are emerging. Adie Goldberg highlighted the impactful involvement of Emergency Medical Services (EMS) in some Washington communities. EMTs, who are trusted figures, conduct post-discharge check-ups, participate in palliative care huddles, and even deliver meals. This model has proven effective in reducing unnecessary emergency department visits and hospital readmissions, with hospitals sometimes subsidizing these services due to the demonstrated cost savings. A poignant anecdote involved an EMT purchasing a $25 grabber for a patient struggling to reach her remote control, thereby resolving her repeated calls for assistance.
Gregg Vandekieft praised a program in Southeast Washington where nurse practitioners with palliative care backgrounds are integrated into chronic disease management models. This approach enhances financial sustainability through improved billing and codes, broadens reach into primary care, and has led to significant reductions in ED visits and hospitalizations.
Dr. Youngwerth championed the University of Colorado’s Master of Science in Palliative Care program and the related community Hospice and Palliative Medicine Fellowship. These programs offer primarily online training for community specialists and an alternative pathway for physicians to become board-certified in hospice and palliative medicine without relocating, thereby fostering the development of palliative care expertise in rural areas.
Dr. Bezak described the "Tele Goals of Care Pause" program, a pilot initiative that utilized AI to identify critically ill patients in rural emergency rooms, providing tele-palliative care before transfer. This program aimed to ensure goal-concordant care, empowering patients to make informed decisions about their treatment preferences, and resulted in a significant reduction in unnecessary transfers and a high assurance of goal alignment. While the program’s continuation is uncertain due to resource allocation, its success demonstrated the potential of technology in bridging geographical divides.
Policy Recommendations for the Future
The discussion concluded with a "magic wand" lightning round, focusing on policy changes that could advance rural palliative care. Dr. Bezak advocated for permanent telehealth reimbursement parity to provide stability and encourage the development of innovative care models. Adie Goldberg called for palliative care representation in all discussions regarding rural health transformation funding to ensure these resources are allocated effectively. Dr. Youngwerth emphasized the need for reimbursement for community-based and home-based palliative care across various disciplines. Gregg Vandekieft proposed a complete revamp of the Medicare hospice benefit, removing barriers such as the six-month prognosis requirement and ensuring comprehensive interdisciplinary team coverage to provide seamless, high-quality care from diagnosis through death.
The overwhelming consensus from the GeriPal Podcast discussion is that rural palliative care is not merely a different model of care but a distinct philosophy rooted in community, resilience, and a deep understanding of local needs. While significant challenges persist, the innovative spirit and dedication of those working on the front lines offer a beacon of hope for improving end-of-life care for all Americans, regardless of their geographic location. The ongoing efforts to integrate technology, foster community partnerships, and advocate for supportive policies are crucial steps toward achieving this vital goal.
