Overcoming Barriers to Growth in Home-Based Palliative Care

Background

The number of patients living longer with serious illness is increasing, and care for these patients is moving inexorably out of the hospital and into community care settings. ¹ For the sickest patients, most of the time this means care delivered in the home.

The economic drivers behind this shift toward the community are well known and continue to be reinforced by new health policy. Most recently, the Chronic Care Act broadened the definition of what Medicare Advantage (MA) plans can cover, including, among other things, home-based palliative care and improved access to telehealth services.^2,3 Providers at risk for the total costs of care for seriously ill patients—through an accountable care organization (ACO) taking two-sided risk or a capitated rate negotiated directly with a health plan—must find ways to avoid preventable and costly hospital utilization while delivering on care quality metrics.

Enter home-visiting palliative care services. Until recent years these programs were operated by a small group of progressive health systems ⁴ and community agencies, but home-based palliative care programs have proliferated rapidly in the post-ACA era. Early data from a Center to Advance Palliative Care (CAPC) mapping project has identified 350 home-based palliative care programs in operation, covering 39% of U.S. counties. Home-based palliative care is now delivered by hospital or health system-based programs that have expanded services into the community, by hospices and home health agencies, by clinician groups, and increasingly by multistate vendors such as Aspire Health. ⁵ While there can be no doubt that home-based palliative care is on the rise, the sizes and scopes of these programs are highly variable, and there is need for continued monitoring over time to understand the degree to which availability of home-based palliative care meets demand.

For those working on the front lines of health care, growth in home-based palliative care should present no surprise. Far too often, seriously ill patients seen during crisis in the hospital—and who are not dying or hospice eligible—are discharged home to their communities with either limited support (in the form of a time-bound home health episode limited to those who are homebound and have skilled needs) or no support at all. This yawning hole in the medical fabric leads to unnecessary patient and caregiver suffering and avoidable rehospitalizations. Where available, home-based palliative care provides a support system for patients too ill to easily come to clinic visits and who are not eligible for or do not elect hospice services. Patients who receive such care report higher satisfaction with their care, ⁶ elect hospice services in greater numbers near the end of life, ⁷ and are more likely to die at home (the preference for most U.S. patients). ⁴

While the benefits of home-based palliative care for patients and families are clear, the business case for such care has emerged in parallel with the shift toward value-based payment. Home-based palliative care has resulted in significant cost savings due to decreased hospital utilization ⁷ ; given that more than 10.5 million Medicare fee-for-service (FFS) beneficiaries are attributed to shared savings ACOs and that health plans are moving toward capitated contracts with providers, these data alone should motivate growth in palliative care services. Home-based palliative care has also demonstrated impact on quality indicators that today's health systems can't afford to ignore, including better patient satisfaction and reduced hospital readmissions. ⁶ Finally, hospices and home health agencies may opt to provide palliative care as a separate business line both to promote eventual enrollment into their primary services and to improve access to in-home care for patients and families in need.

For all of these reasons, access to home-based palliative care should be exploding—but as many who have tried to access such services can attest, demand for home-based palliative care still far outstrips availability. With generous support from the Cambia Health Foundation, CAPC conducted a needs assessment to understand the obstacles that prevent growth in the number and capacity of home-based palliative care programs.

Methods

The need assessment process was undertaken to: (1) describe the models by which home-based palliative care is being delivered and financed, (2) understand barriers and facilitators to care delivery, and (3) identify catalysts for growth in home-based palliative care access. The need assessment was undertaken in parallel with CAPC's “Mapping Community Palliative Care” initiative (mapping.capc.org). Supported by the Gordon and Betty Moore Foundation, the Mapping project aims to identify those community-based palliative care programs currently providing services in patient homes, office practices, and long-term care settings. Taken together, the two projects attempt to provide an assessment of the prevalence of home-based palliative care in communities across the United States to catalog the types of organizations and the program models involved and to uncover barriers to—and proven solutions for—delivery of high-quality home-based palliative care.

Twenty-five home-based palliative care programs were selected to participate in the need assessment. To achieve as accurate a representation of the feasibility of home-based palliative care delivery as possible, care was taken to represent program diversity with respect to geography (region of the United States and urban vs. rural territory), organizational home (health system, hospice, home health agency, or clinician group), and funding model. So as to identify areas of opportunity for rank-and-file programs, programs with published outcomes or national recognition were excluded from the pool of interviewees. Each program completed a survey designed to elicit program descriptors such as location, patient demographics, patient volume, services provided, and funding source(s). After completing the survey, interviews were conducted with each of the home-based palliative care programs, as well as with four relevant national organizations, to gather qualitative data on core components of program design. A standard script was used for interview conversations (available upon request) (Table 1 and Fig. 1).

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FIG. 1.

Location of Survey Home-Based Palliative Care Programs.

Results

Interview participants were queried on their programs' patient eligibility criteria, methods for identifying patients, staffing design, service design, sources of program financing, ability to measure program quality and quality measures used, and program sustainability factors.

The following four major themes were identified when interviewee responses were synthesized: first, need for clarity about the applicability of national palliative care quality standards to home-based programs; second, difficulty financing high-quality interdisciplinary care under traditional FFS billing; third, professional isolation among clinicians working in home-based as opposed to institutional settings; and fourth, need for technical assistance to address discrete program challenges.

Discussion

A field that is short-staffed and growing quickly does not have the luxury of reinventing solutions with every new program. This report calls for the launch of a major national campaign to ensure professional awareness of palliative care standards (particularly after the release of the 4th edition of the NCP Guidelines), technical assistance for home-based program development, and business development resources to support provider–payer partnerships. United messaging and role clarity among national palliative care organizations would accelerate these professional awareness efforts. While the obstacles to growth in home-based palliative care are not insignificant, the time has never been more ripe for building this critical capacity in our communities. The context in which home-based palliative care teams operate their programs is changing rapidly and in directions that promote viability, sustainability, and quality.

Quality standards equip palliative care program leadership with a road map for service delivery and with an external reference to use when advocating for program resources. A second and equally important case for adherence to national quality standards is their ability to be used by payers, The Joint Commission, and other organizations for evaluating and assuring the quality of providers' services. If the palliative care field needs payers to understand the value that high-quality services can deliver, payers need to be able to identify high-quality programs that will deliver upon expected outcomes.

The National Consensus Project published a fourth edition of the Clinical Practice Guidelines for Quality Palliative Care in October of 2018. Building upon the framework laid forth in prior editions, the updated guidelines explicitly reflect community-based programs (including home-visiting palliative care services) and illustrate methods for achieving guideline compliance through case examples. Inasmuch as care quality and quality outcomes for patients, families, and provider organizations depend upon the presence of key components of palliative care, these guidelines should serve as a road map to new and veteran programs. However, this need assessment confirms that while nationally recognized quality standards are necessary to grow home-based palliative care, they are not sufficient. To ensure that program leads are aware of the new standards and can use them to design quality services, widespread dissemination efforts and technical assistance on how to apply palliative care quality standards are critically important. The National Coalition for Hospice and Palliative Care (NCHPC) is partnering with CAPC and with other organizations from the NCHPC to ensure that such technical assistance is available to home-based palliative care programs.

Securing sustainable financing for home-based palliative care was expressed as a universal concern among need assessment participants. In the words of one interviewee, “FFS covers 50% of our program's expenses—we can't make a living going house to house.” Here too, hope is on the horizon, thanks to the large and constantly growing body of evidence demonstrating the quality and positive cost implications of palliative care. The Centers for Medicare and Medicaid Services (CMS) recently reinterpreted several key elements of the MA program, providing MA plans significantly more flexibility in what they cover and for which beneficiaries. The MA program allows for ‘supplemental benefits’ that are not included in traditional Medicare Parts A and B; these supplemental benefits have now been reinterpreted to include “services to diminish symptoms of terminally ill members with a life expectancy of greater than six months (i.e., ineligible for hospice) not covered by Medicare (e.g., palliative nursing and social work services in the home not covered by Medicare Part A).” In conjunction with this new guidance on supplemental benefits, CMS has redefined the “Uniformity Requirement” for MA such that plans are now able to vary benefits and cost-sharing requirements according to the needs of subsets of enrollees (e.g., seriously ill patients).

The Chronic Care Act (passed in May, 2017) also broadens allowable nonmedical services covered under MA plans to include, among other services and supports, expanded use of telehealth and flexible benefit design for chronically ill enrollees. Taken together, these changes give MA plans the capacity to target and pay for home-based palliative care services for high-need seriously ill patients.

Perhaps most significantly, the CMS are considering a new alternative payment model (APM) specifically for home-based palliative care.^11,12 An APM focused on serious illness would represent a sea change for the field, guaranteeing a PMPM payment for delivery of home-based palliative care services to eligible patients. While the new APM will require programs to deliver services efficiently while maintaining high quality (for example, using telehealth where appropriate and by dosing service intensity to patient need), the APM promises to be a game-changing catalyst for growth in the field.

High-quality palliative care structures (e.g., 24/7 coverage, full interdisciplinary team) and services (e.g., time-intensive and repeated discussions with patients and families about their priorities for care) are fundamentally mismatched to the FFS payment environment in which most programs are delivering care. Today, a handful of innovative payers and palliative care providers are beginning to engage in partnerships that adequately fund palliative care programs to achieve desired patient outcomes.^13,14 However, this need assessment exposes a large gap in the business skills needed by program leads to negotiate such arrangements with payers, particularly those not supported by infusions of venture capital. Technical assistance and new dissemination strategies for such training are needed.

The need assessment also points to gaps in technical assistance for home-based palliative care program design and in a lack of awareness of the technical assistance that already exists. While technical assistance for inpatient programs has been produced for nearly two decades, guidance for home-based palliative care programs has emerged more recently and—as reported by interviewees—has not been widely accessed. Given the unique needs of home-based programs whose teams cover a wide territory, have different staffing needs than inpatient programs, and are subject to different billing restrictions and opportunities, there is a need for technical assistance specific to home-based care delivery. The onus for meeting this need sits squarely within the field itself, and CAPC and the other members of the NCHPC strive both to create and disseminate needed training content. In 2016 CAPC launched a substantive collection of program design tools and opportunities for home-based program leads to connect with experts; notably, program leaders are able to attend Virtual Office Hours to consult with experts about program challenges. Based on the findings from this need assessment, future CAPC technical assistance development will focus on convening a national dialog about best practices among home-based program leads and disseminating both program tools and leadership support resources.

A number of national funders have heeded the call for improved care for seriously ill patients and their caregivers and have funded development and dissemination activities among national professional organizations; continued support will be required to meet the needs of patients served by home-based programs. This support is critically important to connecting home-based palliative care program leads with the tools needed to sustain their programs, deliver services under the new APM, and ensure quality of care for patients and families living with serious illness.

Conclusion

The great majority of people living with serious illness and its associated functional impairment and symptom burden are neither hospitalized nor are they dying and hospice eligible. Home-based palliative care fills this critical gap in care. The evidence for relief of suffering, quality outcomes, and cost effectiveness is consistent and growing, reflected by rising investments by major health plans and by federal policy changes aimed at improving access to these services.

Technical assistance on adherence to quality guidelines, access to program development tools and best practices, and payment mechanisms realistically applicable to palliative care practitioners could relieve the obstacles described in this study and result in a rapid growth in access to home-based palliative care services nationwide. Now is the time for health systems, hospices, home health agencies, clinician groups, health plans, and policy makers to take note of the favorable trends in health care payment and quality standards and to invest in development of sustainable, high-quality home-based palliative care services in their communities.