People who face serious illness can often benefit when care is provided to them in their home environment. To date, such community-based services like palliative care to ease pain and suffering have been largely the province of those with money to pay privately. Some states are looking to leverage public programs to make these services more broadly and equitably available in the community.For example, Hawaii is leading in the creation of a home-based benefit for palliative care services. The state has developed a model framework that quantifies the cost and expected results; and is now turning to implementation. The program development was funded primarily through philanthropy. It will be delivered through both private plans and Medicaid. The initiative seeks to use evidence from state, federal and private models to support the case for reimbursement by Medicaid, and to offer the framework to other states for adaptation.
At the C-TAC Summit in November 2021, we convened experts working on this issue.
The greatest challenge experts identified is how to achieve the benefits of standardization when states are so different: their population, geography, culture, socio-economic conditions, and differing state laws and policies. States will adamantly say that one size does not fit all.
The question becomes: Does every state have to start from scratch so their Medicaid program can help seriously ill persons of low income obtain the community-based palliative care services than higher-income persons receive? Instead, can we learn from Hawaii’s experience and shorten the timeframe to build success in other states?
The experts hit on several themes that offered important lessons for states. One is the importance of a framework. Starting with the focus on the beneficiary and the goals of patient and family satisfaction, build the program to succeed. That means trying to standardize certain elements that won’t change much from state to state—a core definition of a palliative care services benefit, who receives it, and who provides it. For that, drawing upon what Hawaii has taken so long to develop gives other states a head start. Further, the Hawaii experience shows the work necessary to achieve provider buy-in and the lesson that buy-in is critical to success, even if it takes a long time. Engaging all stakeholders through their organizations and communication according to the maxim: “If you want to go fast, go alone; if you want to go far, go together.”
While the framework can provide standard elements, it also can be flexible to accommodate factors unique to the different states. As Medicaid is a Federal/State collaboration, flexibility is necessary to gain approval. Agree on the goals and let the government decide the pathway to success: “Hold tight to your customer; loose to your contract.”
Beyond satisfying the requirements of government officials, help is needed for critical partners. Community-based organizations, especially faith-based organizations, have great expertise with the population, but often little experience in meeting government requirements. They lack infrastructure for this and will need aggregators to provide back-office work. These elements all arose in Hawaii’s journey and can provide guidance for others.
At least 15 states have taken initial steps to embark on a process that can benefit from Hawaii’s experience. On April 27, from 1-3 pm, the C-TAC and the Petrie-Flom Center at Harvard Law School will convene states and other stakeholders in a virtual forum to assess the progress and opportunities for this state innovation, as part of our collaborative Project on Advanced Care and Health Policy. Subsequent sessions will track a peer learning and action collaborative that seeks to support state efforts to extend the benefits of palliative care services to all seriously ill residents.
Written by: Cheryl Matheis, C-TAC Strategic Advisor
