Minnesota Rural Palliative Care Initiative: Building Palliative Care Capacity in Rural Minnesota

Introduction

Formal palliative care programs are uncommon in rural communities even though rural populations are often disproportionately elderly and chronically ill. Most models for palliative care service delivery are focused on hospital based providers in larger communities and do not fit the capacity or structure of rural health care organizations. Discussion of these issues led to a partnership between Fairview Health Services' palliative care program and Stratis Health, an independent nonprofit organization focused on health care quality, to develop the Minnesota Rural Palliative Care Initiative (MRPCI). This article describes the conceptual framework, structure, and outcomes of a novel approach to palliative care program development in 10 rural Minnesota communities.

Background

National reports identify a gap in palliative care program availability in rural communities. Although the number of hospital palliative care programs continues to grow, only 22% of small hospitals (defined as having fewer than 50 beds) provide palliative care services, which illustrates the need for expansion of palliative care programs in rural communities.^1,2 Additionally, there is a lack of organizational models for rural palliative care programs, and few rural-relevant resources to guide program development. The majority of the rural-relevant literature available comes from other countries and includes little information about operational structures.^3–7 Research is also lacking on models that incorporate partnership and capacity building that should be considered in rural settings. ⁸

Supporting the urgency to address palliative care capacity is the disproportionate and growing population of older adults, many of whom have serious illnesses and reside in rural communities. In Minnesota, although only 30% of all state residents live in rural communities, 41% of those residents are over the age of 65. ⁹

The primary goal of the MRPCI was to assist communities to establish or strengthen palliative care in rural Minnesota. The MRPCI demonstrated a new approach to developing community based palliative care in rural settings, blending quality improvement methodology and endorsed practices for palliative care. The conceptual framework was developed based on three components: community capacity development theory, a learning collaborative model, and the National Quality Forum (NQF) Consensus Report: National Framework and Preferred Practices for Palliative and Hospice Care Quality. ¹⁰

Community capacity development theory is the combined influence of a community's commitment, resources, and skills brought together to address problems and opportunities. ¹¹ The second component of the MRPCI, a learning collaborative model, includes education and technical assistance. A learning collaborative typically includes three to four in-person sessions over 12 to 18 months facilitated by an external organization, with technical assistance provided between sessions by faculty mentors. ¹² The NQF Consensus Report was the third component, and provided a set of NQF endorsed preferred practices applicable in multiple settings of care. Use of these preferred practices focused the teams on improving processes that could be implemented in multiple sites of care within their communities.

Methods

The core project team for MRPCI brought expertise in quality improvement, rural health, outpatient nursing, and palliative care program development. The team included two program managers from Stratis Health and a palliative care expert from Fairview's Palliative Care program. The team developed a needs assessment, learning session curricula, and mentoring call format. In addition, project team members served as faculty and mentors. An advisory committee of palliative care and rural health experts offered initial and ongoing feedback. The initiative received grant funding to develop and implement the program.

Recruitment and information about participation was publicized in newsletters and e-mails for hospitals, hospice organizations, home care agencies, clinics, and nursing homes. The definition of “rural” included communities served by a hospital licensed for fewer than 150 beds. The project team developed selection criteria and reviewed 35 submitted applications to select 10 community teams. Selection criteria included factors such as interdisciplinary representation on the team from multiple settings of care, medical staff engagement, well-defined goals, and expectations that aligned with the intent of the project. After acceptance into the MRPCI, each community team completed a needs assessment and telephone interview with the project team. Following the structure of learning collaboratives, three learning sessions and a concluding outcomes congress took place. Each session included presentations on palliative care and program development complemented by small group discussion. Consistent with the theory of community capacity development, each team first identified a goal most important to improving care for people with serious illness, and developed an individualized action plan tailored to its community's needs and resources. Faculty mentors encouraged teams to focus on the NQF preferred practices and to define measures in their action plans. The project team held individual mentoring calls every three months, for a total of six calls per team, to reinforce learning session content and problem-solve barriers. Curriculum for each of the learning sessions was based on needs identified during mentoring calls.

To support MRPCI, Stratis Health created a microsite, www.stratishealth.org/palcare, dedicated to rural palliative care, with resources for program development, links to national guidelines, example action plans, sample clinical order sets, and clinical assessment tools. These resources allowed participants to easily access rural relevent tools in implementing their tests of change. The site also included a password protected area where teams shared draft documents and tools to help spread learning across the participating communities.

The initial needs assessment completed with the 10 communities reflected a strong interest in education in palliative care clinical skills. Although this was not the principal focus of the MRPCI, education on pain management and communication was offered to participant teams via web-based educational sessions.

The 10 communities completed a final evaluation survey to assess the benefit of the various components of the MPCRI and satisfaction with participation.

Results

The participating teams represented geographically diverse Minnesota communities. The population of health care service areas varied from 9000 to 200,000 with a median of 49,000. All communities had an existing hospice program. Four of the hospital participants were federally designated critical access hospitals. Community team participants included nurses, physicians, social workers, and chaplains, and represented hospitals, home care, hospice programs, long-term care, clinics, assisted living, a college department of nursing, parish nurses, clergy, and public health agencies. The 10 teams represented a total of 64 organizations.

By the end of the 18 months of the collaborative, all community teams had identified a target population and had developed and refined an action plan including at least two strategies based on NQF preferred practices to address community needs for palliative care. The most common interventions were implementing consistent order sets for end-of-life care across care settings, developing advance care planning initiatives, providing clinician education, and building community awareness about palliative care.

Only one community had an existing clinical palliative care program at the start of the MRPCI. During the collaborative, five additional communities built a core team to provide palliative care services. These teams developed eligibility criteria, admission processes, and structure for service delivery. Across these communites, services varied in terms of methods of service delivery, interdisciplinary team composition, patient focus, and credentials of the coordinating staff (see Table 1).

On the final evaluation survey, participating teams rated all components of MRPCI as helpful and recommended participation to others. Participants indicated they had increased knowledge regarding pain management (73%, 46/63) and increased knowledge regarding effective care goals discussions (81%, 51/63), pre- and post-education. To help understand if the MRPCI had an impact at a community level, Stratis Health compared answers from the needs assessment of the community teams against the final evaluation survey. Results indicated a sense among community teams that capacity, including knowledge and experience with palliative care, had improved during the project.

Discussion

While improving end-of-life care has been the focus of several quality improvement projects and large learning collaboratives, few have included rural participants.^13–15 MRPCI confirmed the feasibility of building palliative care capacity in rural communities using a framework of community capacity development theory, a learning collaborative, and the NQF preferred practices for palliative care. The unique nature of rural communities impacted both successes and challenges. The successes included teams demonstrating a strong commitment to care for residents in their communities, an ability to leverage existing personal working relationships among clinicians in different settings, and comfort with their ability to try new approaches and achieve goals. Communities also invited involvement of social service agencies, faith communities, and programs serving seriously ill patients to augment their clinical team capacity. Challenges specific to these rural communities included inability to recruit and support a palliative care specialist, unsuitability of traditional professional fee payment models, and the multiple responsibilities of staff.

The rural teams faced barriers similar to programs in other settings: lack of widespread understanding of palliative care, how it differs from hospice, the need to make the case with multiple stakeholders, and financial constraints. The community team approach also brought challenges. Team members, representing different settings and disciplines, did not always have prior experience working together or a clear understanding of the parameters of relationships among the participating organizations.

Palliative care programs and services align well with other efforts to redesign care delivery. This program required participating teams to have representatives from organizations across settings of care in their communities. Similarly, health reform efforts at the state and national levels are calling for increased coordination across settings of care. The initiative's approach may be useful in supporting additional cross setting initiatives that are gaining national prominence such as coordination of care, reducing hospital readmissions, patient centered medical homes, and shared decision making.

Based on the experience of the MRPCI, we propose five recommendations to support rural palliative care development. First, external resources and support are necessary to support community development of palliative care services. Second, ongoing networking is critical to sustainability and continued progress. Third, defining community-based metrics is essential to quantify the impact on cost, quality, readmissions, and patient and family satisfaction. Fourth, reimbursement for palliative care services as a covered benefit would make a significant difference to the sustainability of programs in rural communities. Fifth, development of palliative care programs and services must align with other efforts to redesign care delivery to maximize efficiency for rural providers.