Hospice Providers Wrangle with Barriers to Expanding Advance Care Planning

Hospices, other providers, payers, as well as state and federal agencies are increasingly recognizing the importance of advance care planning to ensure goal-concordant care and reduce health care costs. Barriers in existing public policy are limiting the growth of these services, along with increased strains brought on by the coronavirus pandemic, according to some stakeholders.

Studies have shown that advance care planning can reduce hospitalizations and health care costs, boost hospice and palliative care utilization, and help ensure delivery of care that aligns with the patient’s wishes. Despite its benefits, existing barriers have impeded patient and family access and affordability of advance care planning, among which are federal policies around cost-sharing and patient deductible costs in the Medicare program, according to Davis Baird, policy and advocacy manager for the Coalition to Transform Advanced Care (C-TAC).

“When advance care planning services are billed outside of the annual wellness visit, patients are responsible,” Baird told Hospice News. “These discussions are often initiated by specialists that have even higher co-pay rates. Only certain provider types are eligible to bill for the Medicare advance care planning services. Patients and clinicians understand these conversations, but often bump up against structural barriers, including the scarce numbers of trained and qualified providers eligible to provide these services and getting paid for doing so.”


Beginning in 2016, the Medicare began paying for advance care planning services provided by a physician or qualified health care professional. Reimbursement and cost issues have risen since then. Also, in June the U.S. Department of Health & Human Services Office of the Inspector General (OIG) added advance care planning audits to its work plan, amid growing concerns about potential improper billing and payments based on faulty documentation of services.

Adding to the barriers impeding advance care planning accessibility is the temporary flexibility brought on by the COVID-19 pandemic from the U.S. Centers for Medicare & Medicaid Services (CMS) waiving the requirement for hospitals and critical access hospitals to provide information about advance directive policies to patients. While intended to allow for overwhelmed providers to focus on urgent care delivery during the national health emergency, the waiver inhibits a crucial referral connection for hospice and palliative care providers to reach patients in these settings whose care goals align with their services.

“The pandemic has opened people’s eyes to how important advance care planning is,” said Baird. “Providers, patients and policymakers are all more interested now in how to make ACP as accessible and easy as possible.”


The COVID-19 pandemic has shed light on several gaps in health care, including in the hospice and palliative care spaces. Rising death tolls may be raising awareness of the need for advance care planning, while financial disparities and provider downfalls may create additional hindrances.

“One existing policy barrier is that patients, in many cases, are still responsible for a co-pay for this essential service,” said Ryan Van Wert, M.D., co-founder and CEO of Vynca, a nationwide advance care planning network. “In light of the important national discussion we are having around health care disparities at this time, co-pays can present significant barriers to patients. With the pandemic, advance care planning is truly highlighting where and who is doing advance care planning well and those who are not. It’s forcing some organizations who thought they were doing this well to recognize that they truly are not, or that it only works in the one way it was designed and not dynamic to accommodate the current barriers that exist due to COVID-19.”

Financially strained under economic impacts such as rising unemployment rates, many patients and families are unable to afford additional costs associated with advance care planning. Making these services affordable while also viable for providers, referral partners and interdisciplinary teams who deliver them has been an ongoing challenge.

“The conundrum is how we pay for additional resources to provide a service that will result in better care and also reduce health care costs,” said Carole Montgomery, executive medical director, Respecting Choices, a division of C-TAC. “Advance care planning is part of quality preventive care, and as such, the patient financial responsibility should be waived.”

The Primary Care First initiative, coming in 2021, will include a Serious Illness Population payment model. Designed to improve care coordination, the program is expected to facilitate increased advance care planning.

“There is an increasing national voice from various stakeholders in the advance care planning and serious illness communities,” Van Wert said. “In many cases, it’s being driven by leaders in the palliative and hospice communities, as well as from patients and their caregivers. This advocacy on behalf of patients with serious illness is imperative to providing the highest quality care. While some changes during this time have been positive, such as the loosening of the restrictions around telehealth, and have broken down some of the barriers that exist today around advance care planning, we need to continue to make progress and ensure these changes are permanent and that we continue the upward momentum.”

The expiration of the CMS 1135 waivers that impact advance care planning is anticipated to improve access after the federally declared national emergency period lifts, along with the industry’s movement towards value-based care for Medicare populations. Further recognition of advance care planning as a primary preventative service is needed, according to Montgomery.

“If we shift from a ‘medicalized’ paradigm of ACP to instead see it as a means for preparing individuals by supporting them to be centered and clear on what matters most to them before engaging in any clinical decision making, then maybe a different paradigm begins to emerge,” said Montgomery. “This paradigm shift will call us to elevate how policy change can be used to motivate and fund ACP within non-health care spaces. Although the tragic results from inadequate advance care planning shows up in health care settings, at its core the problem we’re trying to solve is about a shared human experience: what matters most to us when our health – our very lives – hang in the balance. Normalizing conversations about that topic needs to happen in the places and with whom we live, worship, learn, work, grow old and seek care.”

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