Many state health policy leaders are interested in increasing access to palliative care so that people who are seriously ill can get needed care, including support for their caregivers, while avoiding costly, unwanted, or unnecessary care. Nearly half of the states have a palliative care taskforce or advisory council through state legislation. Just this year, six states — Colorado, Maine, Maryland, Ohio, Texas, and Washington — applied and were selected by NASHP to participate in a two-year learning collaborative to improve care for people with serious illness by exploring a Medicaid benefit for community-based palliative care.
Throughout the past five years, NASHP, with generous funding from The John A. Hartford Foundation, has worked closely with state policymakers on palliative care. Based on our work with them, here are their most frequently asked questions … and the answers.
What is palliative care?
Palliative care is supportive care for people living with a serious illness that aims to provide relief from the symptoms and stress of the illness, with the goals of improving quality of life for both the patient and the family. Palliative care is based on the needs of the patient, is appropriate for any stage of illness, and can be delivered alongside curative care.
How and why do states define palliative care in statute?
By defining palliative care in regulations and statute, states can establish a baseline set of reimbursable services that provide support for symptoms and stresses. Defining palliative care separately from hospice in statute can also help clarify that palliative care is different from hospice and that any individual living with serious illness can receive these services regardless of their prognosis, treatment plan, or care setting. These definitions can allow more flexibility to provide palliative care services to individuals with serious illness without the individual having to forgo curative care. Examples of state definitions of palliative care that distinguish it from hospice include:
- California’s guidance around requirements for palliative care standards
- Texas’ definitions of palliative care and hospice
The National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care can also be considered in developing a palliative care definition. These guidelines were developed through extensive deliberation among subject matter experts and include a comprehensive definition of the domains of care that palliative care services should address. Another definition of the population that can most benefit from palliative care comes from Amy S. Kelley and Evan Bollens-Lund in 2018, which was developed through an analysis of Medicare data in addition to working with subject matter experts.
How do people with serious illness access palliative care across settings in states?
Palliative care is most often delivered in hospitals. Nationwide, 72 percent of hospitals with at least 50 beds have a palliative care team, and 94 percent of hospitals with at least 300 beds have a palliative care team (as of 2019). However, this varies considerably by state, by hospital tax status, and by urban/suburban/rural areas.
Specialty palliative care consultations and advance care planning visits by billing clinicians have been made available a la carte by health systems when available. However, to provide Medicaid beneficiaries with the option to receive this care in their own homes and communities, some states (such as South Carolina and California) have supported palliative care in community-based settings.
Palliative care can be received in different settings, such as clinics, in-home settings, and long-term care settings. Because Medicaid payment for palliative care services covers only a small fraction of the total services delivered within comprehensive palliative care delivered by a team, access to home-based palliative care is extremely limited. A Center to Advance Palliative Care analysis from 2019 summarized what is known about home- and community-based palliative care availability. The report found that two-thirds of surveyed community-based palliative care programs were provided through hospitals and hospices and almost one-third of the surveyed programs provided services in long-term care settings.
What are some innovative ways states have pursued implementing palliative care services in community-based settings?
California, Hawaii, Maine, and Oregon have enacted legislation supporting payment for provision of palliative care services to Medicaid beneficiaries. These efforts are highlighted in the blog post “Emerging State Innovations in Developing a Medicaid Community-Based Palliative Care Benefit.” Most recently, Hawaii submitted a state plan amendment supporting community-based palliative care. Maine is also exploring palliative care support in line with Maine Revised Statutes, Title 22, section 3174-GGG.
How are state Medicaid programs paying for palliative care? Is there a standard set of services states are covering?
Currently, most states pay for palliative care services delivered by palliative care professionals eligible to bill Medicaid via fee-for-service. States have multiple options to support palliative care, including providing guidance to providers on billing codes associated with palliative care services.
States have the option to use a range of codes such as:
- End-of-life counseling HCPCS (S0257)
- Advanced care planning CPT (99497, 99498)
- Home/community interdisciplinary care team consult CPT (99341–99350)
- Inpatient/outpatient interdisciplinary care team consult CPT (99366, 99368)
- Individual, family, marriage counseling, in-home CPT (99510)
- Respite, in-home HCPCS (T1005)
- Advanced illness management, monthly, home HCPCS (S0311)
- Medical home program, comprehensive care coordination and planning HCPCS (S0280, S0281)
- Pre-hospice/palliative care services (revenue codes 0690–0699)
Recently, the Centers for Medicare and Medicaid Services (CMS) revised codes referring to chaplain services. Previously, the three codes below specifically referred to services delivered by the Department of Veterans Affairs (VA). In October 2022, CMS revised these codes to remove references to the VA, allowing for flexibility in using the billing codes to document encounters:
- Assessment by chaplain services HCPCS Level II (Q9001)
- Counseling, individual, by chaplain services HCPCS Level II (Q9002)
- Counseling, group, by chaplain services HCPCS Level II (Q9003)
However, current reimbursement covers a small part of the services included within a comprehensive interdisciplinary care model of palliative care reimbursement. States can incorporate palliative care service reimbursement through Medicaid 1915(c) home- and community-based services waivers, state plan amendments, and 1115 demonstration waivers. South Carolina included palliative care services in its Financial Alignment Initiative (FAI) 1115 waiver, and with the end of this initiative is exploring transitioning its FAI into integrated dual special needs plans (D-SNPs). Colorado has a 1915(c) waiver covering palliative care for children. (All Medicaid beneficiaries under the age of 21 are entitled to receive hospice benefits concurrent with curative treatment under the federal Affordable Care Act; states have clarified this for their state residents.)
More information about state approaches to supporting access to palliative care services is available in the NASHP factsheet “How States Can Embed Palliative Care in Health Care Reform Initiatives.”
States can also create guidance and regulation to support the provision of a defined set of palliative care services. For example, California issued guidance to Medicaid managed care plans establishing requirements for coverage of palliative care services for certain beneficiaries, including:
- Advance care planning
- Assessment/consultation
- Developing plans of care
- Care coordination
- Pain/symptom management
- Recommendations about the composition of the palliative care team
Federal law requires D-SNPs to have contracts with state Medicaid agencies, and the contracts must meet specific requirements. In 2023, California issued guidance to D-SNPs on the provision of palliative care as part of its CalAIM initiative. States’ guidance on palliative care provision could also include other requirements, such as provider training and competencies, or consumer awareness and protections, to improve quality and outcomes over time.
Is community-based palliative care cost-effective?
Palliative care can be cost-neutral and offers opportunities for cost savings. A recent actuarial analysis by Optumas commissioned and published by NASHP reported that effectively administrating a Medicaid palliative care benefit for high-service utilizers could potentially produce potential per-Medicaid member-per-month cost avoidance savings between $231 and $1,165, with a potential return on investment for every $1 spent on palliative care ranging between $0.80 and $2.60. The report also found that implementing palliative care benefits for all members in a state Medicaid program was expected to be at minimum overall cost neutral, while improving quality of life. Research by Yadav et al. (2020) compared studies of hospital, outpatient, home, nursing home, and hospice palliative care for people with cancer, finding palliative care was associated with reduced health care costs by setting in the studies.
How can state policymakers learn more and get involved?
NASHP’s Palliative Care Resource Center provides resources and support for states to implement and expand high-quality palliative care. To get news and updates on state palliative care initiatives and resources, sign up for our quarterly newsletter.
Acknowledgements
The authors thank Torrie Fields, Neva Kaye, Allison Silvers, and Stacie Sinclair for input on this blog. This work was supported by The John A. Hartford Foundation.
