For many social workers, palliative care usually means an in-patient hospital consult for a patient near the end of life. This is often driven by the fact that the medical team may be running out of treatment options with a viable chance of success. The goal in many of these cases is to have “the talk” with patients and their families about hospice services. This is a critical role for social workers on the team and when done well, patients and families walk away feeling respected and supported even in the face of a bleak prognosis.  

What if palliative care were introduced earlier in the disease trajectory, alongside treatment? Too often we think this can’t be done, that patients need to choose between hospice and treatment. Not true. In fact, key elements of palliative care are already a core part of social work in both inpatient and outpatient settings—counseling, caregiver support and advance care planning, to name a few. Palliative care can be an essential extra layer of support from diagnosis, throughout treatment or at end of life. A case study in Montgomery County, Maryland, a suburb of Washington, DC, the Montgomery County Palliative Care and End of Life Coalition is working to increase access to palliative care, specifically through community-based palliative care (CBPC). While our work is just beginning, this article summarizes key lessons learned and highlights helpful resources.

Background. Like many communities that successfully have CBPC, the effort in Montgomery County draws on those who have worked together on end-of-life care issues in the past. The Coalition began in 2006; and it is the only interagency, public-private partnership group dedicated to this policy area. A recent grant from the Healthcare Initiative Foundation supported the potential expansion of the Coalition's focus to include the provision of CBPC for those with serious and advanced illness. Expanding the scope of focus from end of life to earlier in the disease trajectory complements recent national, state and local initiatives as well as acknowledges the extent of unmet needs for patients and families managing the diagnosis of serious or advanced disease.

Lessons Learned. Based on a series of key informant interviews with local clinicians, service providers, patients, caregivers and content experts, we found the following:
 

1. A lack of clarity on the definition of palliative care, CBPC, what each entail and how they are different from hospice. Based on a review of best practices and information gleaned from key resources, the Coalition is using the following to guide its work:
    
   • Palliative Care provides relief from pain, stress and other symptoms experienced by patients with serious illness and their families. The goal is to improve the quality of life by addressing physical, psychosocial and spiritual needs associated with disease management and progression. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
   • Community Based Palliative Care provides care continuity for patients and families with serious illness from diagnosis and/or inpatient hospital stay and prior to end of life and/or enrollment in hospice. CBPC can be provided in a variety of settings—community clinics, medical offices, patient homes (including private residences as well as nursing homes and assisted living facilities) or over the phone. Care is delivered by a multidisciplinary team including doctor, nurse, social worker and chaplain, as appropriate.
      
2. Increased interest in providing home-based care. The shift to value-based care provides new incentives for delivery of efficient, patient-centered care. Efforts to reduce 30-day hospital readmissions provide a natural link to increasing services at the community level, which stabilize patients at home. In Montgomery County, patients with at least three chronic conditions or with serious and advanced illness have higher-than-average, 30-day readmission rates. The Coalition identified this population as a priority for CBPC.
    
3. Care coordination is essential, although difficult to fund. The current patient care system is fragmented. Continuity of care and care coordination between hospital and community and primary care physician is lacking for those with serious and advanced illness. Without coordination in the community, patients and families with serious and advanced illness either go without essential services or are burdened with responsibility to research and navigate access to appropriate resources. The Coalition is exploring emerging models for care coordination including the AHRQ Pathways Community HUB model. An on-line resource directory for local palliative care providers is also being developed.
    
4. At this time, there is no consistent set of criteria or standards for CBPC services. Increased national attention to the benefits of offering CBPC has generated more marketing of palliative care services. Many of these services are, or can be, provided in the home and often when patients and families are at their most vulnerable. Attention needs to be paid to training and certification. The Coalition is using information from the California Advance Illness Collaborative, the National Consensus Project: Community Based Palliative Care Summit,and the Center to Transform Advance Care: Serious Illness Strategies to develop a set of criteria.
    
5. For CBPC providers, financing the delivery of multidisciplinary team-based care is a significant challenge. While some services can be billed under Medicare for transition care management and chronic care management, reimbursement is based on a patchwork of services and is not sufficient to ensure delivery of full multidisciplinary care. Uncertainty of funding for quality programs jeopardizes growth of CBPC. The Coalition is working with providers to develop options for sustainability.
    
6. Shifting the delivery of serious and advance illness care from the acute care setting to a home-based setting requires building the capacity of communities. Coalitions of community stakeholders have a critical role to play in doing so. Most coalitions convene public, private and nonprofit partners to not only raise awareness and reduce stigma around end-of-life issues, but also to avoid duplication of services and operational silos. Coalition member expertise can inform the development of local policy, identify resources, increase access to palliative care services and strengthen outreach to targeted populations.

Resources. The information and hyperlinks below highlight the emerging body of research on best practices for the development of CBPC.

• Center to Advance Palliative Care (CAPC) – Serious Illness Strategies
• Coalition to Transform Advanced Care (C-TAC) – Serious Illness Framework
• Institute of Medicine (IOM), Dying in America, Report Brief – Improving Quality and Honoring Individual Preferences Near the End of Life, 2014
• National Academies of Science, Engineering and Medicine’s: Quality Care for People with Serious Illness: Workshop Proceedings 2017
• National Consensus Project: Community Based Palliative Care Summit
• California Healthcare Foundation: CBPC Field Guide
• Coalition for Compassionate Care of California