How to Support State Palliative Care Payment Policy Discussions

Palliative care is hitting its stride. Leaders in the field have spent decades building up programs, articulating the value proposition, and educating decision-makers on how palliative care can help alleviate suffering. And now, policymakers at the state level are taking decisive action to expand access. This progress has been accelerated by organizations such as the National Academy for State Health Policy (NASHP), with support from The John A. Hartford Foundation, and other leaders such as the California Health Care Foundation (CHCF), who have developed resources to catalyze state official action.

As state officials develop new payment strategies to support palliative care, they must work closely with palliative care champions (e.g., clinicians, program leads, patients and families/caregivers, associations, etc.) to ensure that policies and programs can achieve their goals. To be effective partners, however, champions must come prepared with evidence, actionable suggestions, and a collaborative attitude. This blog provides an overview of recent state payment activity to provide examples for your future work, the kinds of information that state policymakers need from palliative care champions to achieve their goals, and some tips to support successful partnerships.

There have been some exciting state policy activities in the last few years regarding the palliative care workforce (e.g., Illinois’s legislation to establish a loan repayment program specific to hospice and palliative care), quality and standards (e.g., Minnesota and Nebraska's laws to establish palliative care definitions outside of hospice), and public awareness (e.g., New Jersey’s laws to establish a public awareness campaign and information act; Texas’s inaugural Supportive Palliative Care Awareness Day). However, what has generated the most attention is the growing number of states exploring options within their Medicaid programs to support community-based palliative care.

Building on California’s early work (including preliminary data) to require that all Medi-Cal Managed Care Plans facilitate palliative care access to targeted beneficiaries, Hawai’i underwent a statewide planning process to co-create parameters for a new palliative care benefit. This culminated in submitting a State Plan Amendment to the Centers for Medicare and Medicaid Services (CMS), which, if approved, will create a powerful precedent for other states interested in doing the same. Closely following this:

• Washington passed a law that appropriates $250,000 for the Health Care Authority to “design a standardized payment methodology for a palliative care benefit for the state Medicaid program and the employee and retiree benefits programs”;
• Oregon passed a law requiring Coordinated Care Organizations to provide interdisciplinary, in-home palliative care;
• Both Maine and Maryland passed laws that formalize a process of working towards Medicaid payment for community-based palliative care and
• New Jersey introduced legislation that would cover community-based palliative care benefits under Medicaid.

In addition, anecdotally, at least nine other states have begun to explore similar options to establish Medicaid coverage for interdisciplinary, community-based palliative care through value-based payment mechanisms. This groundswell of activity presents a unique opportunity for palliative care champions across states to share information and learn from each other. Indeed, NASHP selected six states to participate in its State Policy Institute, which focuses on developing a Medicaid palliative care benefit, and resources developed through this Institute will be freely available as they are finalized.

As this exciting state-level activity continues, policymakers must hear from constituents and subject matter experts (SMEs) to help ensure that programs meet the needs of the people they are intended to help and are grounded in the best evidence available. One of the most important reasons for this is that policymakers, particularly legislators, cannot be experts in everything. Health policy is complex, and palliative care is a particularly nuanced facet of health care that even the most intelligent policymakers may need assistance navigating.

In the case of palliative care policymaking, key constituents, and SMEs include clinicians, provider organizations, and patients and families (collectively referred to in this piece as “champions”)—particularly minoritized and/or underserved patient populations that often have less access to participation in these discussions. Champions do not need to be policy or data experts. Their role is to present information supporting palliative care, ranging from how its provision (or lack thereof) impacts the lived experience of serious illness all the way to peer-reviewed evidence on improved patient satisfaction, care quality, and outcomes. As policymakers explore opportunities to expand palliative care access at the state level, we have observed patterns in the kinds of information and support they need from palliative care champions, including:

State policymakers need guidance on which patients would be most appropriate for services, specific to the patient population in their state. While the list of ICD-10 codes developed by Dr. Amy Kelley et al. provide a comprehensive foundation for the palliative care population nationally, palliative care champions can play an important role in winnowing down which are most relevant for the development of a state-specific palliative care benefit.

State policymakers are looking to develop a standard of care for delivering comprehensive palliative care services for people with serious illness. Because these services have historically been unstandardized due to lack of coordinated payment, policymakers need guidance on what the standard of care should be, including the core staff and services necessary to achieve the best outcomes possible for patients. (Champions should also note what is currently paid for, and what is unreimbursed under Medicaid fee-for-service (FFS), so that policymakers can better understand where the gaps lie.) In addition to staffing and services expectations, champions can serve to define a typical clinical protocol that they would expect to deliver to patients, based on acuity and need.

Palliative care programs are the only entities that can accurately describe how many patients they can serve, what their current service area is, and how they could expand if given additional coverage. This can help policymakers understand the level of unmet need and how much investment may be required to fill the gap. Several states have conducted surveys to get a better sense of the local palliative care landscape, including the number of programs, current staffing, patients served, etc. Examples of selected surveys can be found in the State Palliative Care Forum.

In addition to palliative care program-specific data, champions can help policymakers better understand the context of serious illness in their state. CAPC will be publishing updated individual state reports that include information on the availability of hospital- and community-based palliative care, the number of certified clinicians, and broader indicators that justify the need for investment and highlight potential opportunities for collaboration.

For any new policy or program—but particularly payment—policymakers need assurance that the community is bought into the proposed solution. There may even be state or federal requirements about demonstrating that the process has included stakeholder input. Palliative care champions are essential to helping policymakers meet these requirements since they will be the most connected with other clinicians and programs, as well as the patients and families they serve. For instance, Hawai’i’s broad stakeholder convening efforts were the result of deep collaboration between Kōkua Mau (Hawai’is hospice and palliative care organization, Hui Pohala (a legislatively-established, multi-stakeholder workgroup to improve access to high quality palliative care throughout Hawai’i), and the Med-QUEST Division (a division of Hawai’is Department of Human Services that provides health care benefits to residents who are eligible for Medicaid). These convenings were essential to the formulation and advancement of the benefit, and this process should be replicated in other states doing similar work.

There are resources available to help state palliative care champions who are in discussions with policymakers. These include the “Building a Medicaid Benefit” bundle on CAPC’s Palliative Care State Policy page; the Essential Elements of Medi-Cal Palliative Care Services toolkit from the California Health Care Foundation; and the State Palliative Care Forum, a free and open platform in which any state-level palliative care champions are encouraged to connect, ask questions, and share resources (please email Stacie Sinclair. if you would like to be added).

Again, the involvement of palliative care champions is essential to the success of state-level palliative care policy initiatives, and champions do not need to be policy experts to make a positive impact. That said, there are some principles for effective engagement that we strongly urge champions to consider:

If you are approaching a state policymaker to initiate a potential program or policy, make sure that you have a solid understanding of what has already been done in your state to support people living with serious illness. This includes knowing the payers, players, and partners and the recent history of palliative care legislation.

Policymakers need to understand who would best benefit from upstream palliative care, particularly as it relates to the patient population in your state (including children!). Too often, providers will offer population guidance that targets patients who are closer to end of life and/or should be hospice-eligible. While there may be legitimate reasons for this (concerns about current capacity being chief among them), it threatens the opportunity to create programs/payments that could support upstream palliative care. Once state policymakers have the appropriate criteria, they can pull the data and make decisions on the program size; but do not undermine your work by omitting information.

At a whopping 190 pages, we are not advising that any state consider codifying the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care (“NCP Guidelines”). However, it is important to highlight the NCP Guidelines because they are grounded in the evidence base supporting palliative care’s positive outcomes. When champions advocate for less than what is called for in the NCP Guidelines (again, for myriad reasons, including concerns that a full benefit might be considered too expensive and scare policymakers away), it can undermine the field. Present the case that the evidence supports and the field stands behind to start—and the upfront capital needed to achieve the standards. Then, let it be up to the policymakers to figure out how it will work and what might need to be slashed for a benefit to be feasible. In other words, remember that you are advocating for the ideal of a value-based payment model, even as you currently operate within the constraints of FFS billing. Holding up the “ideal” model will help policymakers design something that achieves the best patient outcomes and provider experiences in the future.

Everyone knows this is a difficult time working in health care, as the system continues to reel from pandemic aftershocks and historic clinician workforce shortages. However, state policymakers may lose interest in trying to advance solutions if champions are only highlighting the deficits. If you know that workforce shortages may hinder implementation efforts, it is still possible to highlight:

• The number of clinicians that you have;
• Exemplar programs and partnerships in the state;
• The strengths they bring, including opportunities to leverage what you have, e.g., supportive telehealth policies, regulatory changes to ensure that clinicians across the continuum are practicing to their full scope, etc.;
• Concrete asks to get what you need, e.g., “Graduating X more palliative care physicians per year would allow our programs to see Y more patients”

Also consider the difference between “having enough fully-formed ambulatory teams to deliver palliative care inside of all our institutions” and “having enough providers to care for the population in need.” The latter is acceptable for policy conversations—particularly because payment could be a pathway towards rebuilding the workforce. If more clinicians see there is sufficient and reliable financing to support palliative care, they may be more inclined to move in that direction.

We are all living in a period of hyper-polarization, and palliative care champions—particularly clinicians and patients—may be carrying harms caused by decisions from those who occupy positions of power. However, it is important to remember that the payers and policymakers coming to the table are the ones who are trying to help! Assume that this is your opportunity to share something hopeful and actionable, and to answer questions with solutions rather than problems.

As the field of palliative care continues to gain momentum through state-level initiatives, palliative care champions must partner with policymakers to expand access. To do so effectively, champions must do their homework, come prepared with evidence and data to support their recommendations, and be prepared to convene fellow champions in their state. Please see CAPC’s State Policy page for more resources on how to get started.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.