The Equity Issue With Advance Care Planning Cost Sharing | Health Affairs Forefront

The Equity Issue With Advance Care Planning Cost Sharing | Health Affairs Forefront

There has been recent talk questioning the merits of advance care planning (ACP). However, ACP was developed to be a helpful process to prepare people for future medical decision making, particularly, for those living with serious illness. The patient cost sharing for this process has turned out to be a barrier that disproportionately affects Black and Latinx communities and should be removed.


The Centers for Medicare and Medicaid Services (CMS) created the Current Procedural Terminology (CPT) billing codes for advance care planning in 2016 to incentivize clinicians to have these important conversations. The codes provide reimbursement in any clinical setting and a 20 percent cost sharing (copayment/deductible) applies, as it does for other Part B medical services. The only situation where there is no cost sharing is when ACP is done as part of a Medicare annual wellness visit (AWV), as it’s then considered a preventive service.

However, it is now clear that ACP occurs outside of the AWV, such as with oncologists or cardiologists, during routine primary care follow up visits, or in the hospital during an acute illness. In those situations, the 20 percent cost sharing is charged, which can be $50 or more depending on the specialist or setting. CMS claims data from 2017, the last year for which such data has been analyzed, showed a total of $104.5 million in ACP cost sharing, which represents a sizable cost for patients. 

Cost-Sharing Evidence

A 2020 report by the Office of the Assistant Secretary for Planning and Evaluation on ACP identified cost sharing as a key barrier to ACP access. An important 2021 study in Health Affairs of ACP billing code usage showed that communities of color engage proportionately less often in ACP as part of an AWV, and proportionately more often in other settings; therefore, they are charged cost sharing more often. Previous evidence showed ACP is already less likely to occur overall among these groups, so adding a financial cost further impedes access to an important service.

The most recent ACP study in Health Affairs confirmed that concerns about potential patient financial burden from cost sharing prevent some providers from billing these codes. This is a health equity issue, with ACP cost sharing disproportionately affecting populations who often also lack access to preventive care and adequate financial resources.

Attempts To Remove Cost Sharing

The Coalition to Transform Advanced Care (C-TAC), a national nonpartisan, not-for-profit coalition working to improve the care of those living with serious illness, became aware of the cost-sharing issue from its members and partners. While some private payers currently waive the cost sharing for ACP, via an existing modifier, this varies by payer and is not an option in Medicare. In 2020, C-TAC attempted to have ACP declared a preventive service, which would not require cost sharing, by applying to the US Preventive Services Task Force (USPSTF), the body responsible for designating such services. Unfortunately, in their communication with C-TAC, USPSTF declined to address this issue (private communications from CMS officials) because Medicare already supports counseling for ACP as a preventive service, and the USPSTF did not want to duplicate the work and recommendations of another agency. C-TAC then appealed to CMS to remove the cost sharing, but both CMS and the Congressional Research Service confirmed that CMS lacks statutory authority to do so.

C-TAC is now pursuing federal legislation to remove the cost sharing whenever ACP occurs. The rationale is that ACP is a preventive service in any context and should, therefore, never carry any cost sharing. Interestingly, bicameral federal bills introduced from 2013 to 2017 sought to promote ACP participation by reimbursing patients up to $75 for an ACP discussion. Rather than providing a financial incentive, which would be very difficult to administrate, a more feasible way to promote ACP is to remove the cost-sharing barrier entirely. It is critical to work with Congress on new legislation that removes cost sharing to make ACP implementation equitable for all Americans.

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