Palliative care providers find themselves in a dilemma. Demand for the service they provide is growing, but that growth is hindered by a lack of industry-wide standards for palliative care.

Experts in the field point to a dearth of standards that define exactly what effective palliative care is in the current environment, plus a contract-by-contract patchwork of expectations between payers and payees.

The result is underfunded and under-resourced programs.

“The inherent broadness of the space does make it more difficult to define certain metrics and regulatory scaffolding,” Davis Baird, director of governmental affairs for hospice at the National Association for Home Care & Hospice (NAHC), told Palliative Care News. “That regulatory scaffolding is needed because we can have that spectrum. We’ll only get sustainable reimbursement once we move towards [that regulatory scaffolding and standardization].”

Many palliative care programs lose money because there isn’t a sustainable reimbursement model, according to Baird. To build the scaffolding leading to sustainable reimbursement, providers need to find measurable, non-anecdotal metrics outlining what makes a successful program.

The problem boils down to how palliative care shows its value, Baird said.

For example, a successful palliative care program will mitigate the number of hospitalizations, or trips to the emergency department, Baird said. But while this means enormous cost savings overall, there are still costs – and demonstrating that added cost to payers is one of the insomnia-inducing scenarios palliative providers face.

“Acute care people are cycling in and out of those settings, which of course translates to cost,” he said. “That’s the bottom line.”

Recognizing the need for industry-wide standards, NAHC and others – including the Center to Advance Palliative Care (CAPC), a national organization dedicated to increasing the availability of quality health care for people living with a serious illness – are in the middle of a full-court press.

Brynn Bowman, chief executive officer at CAPC, told Palliative Care News this push began years ago.

Industry leaders on both sides of the equation – payer and payee – sat down about three years ago and started working on the problem. The first piece was determining what measures are important to payers and payees, whittling that list down to a usable set of metrics.

“I think it would help players on both sides of that equation [to have standards],” Bowman emphasized.

Here in 2023, consensus-building is complete, Bowman said. Now begins the process of socializing palliative care providers to the proposed set of standards.

The lack of centralized measurements does not mean palliative care providers lack standards and expectations. It’s actually quite the opposite, Bowman said.

Bowman cited the National Consensus Project clinical guidelines for quality palliative care, which outline the structure, processes and domains of service delivery constituting high-quality palliative care. Now in its fourth edition, Bowman called the guidelines “the gold star” of palliative care. There is also the National Palliative Care Registry, which offers voluntary certification to interested palliative programs.

The Palliative Care Quality Collaborative does disseminate a document to palliative programs, outlining hallmarks of a successful program, Bowman said. The list covers staffing, care delivery and patient evaluation.

The industry is rallying around two new metrics that rely on patient-generated evaluations: Does the patient feel listened to and supported by the palliative team? And does the patient feel they received as much support and care around pain management as they needed?

“It’s kind of self-monitoring and self-moving as a field,” Bowman noted.

For payers, the benefit of an effective palliative care program seems clear.

“High-quality palliative care should help prevent crises and should help prevent, again, when appropriate, an ED visit or a hospital stay,” Bowman said. “ A large proportion of emergency department visits are caused by uncontrolled symptoms.”

According to Baird, the need for developing such standards is clear, but clarity doesn’t always indicate simplicity. Palliative care covers such a broad range of patient care, it can make creating precise metrics difficult.

A patient with diabetes or other long-term chronic illness might need a weekly or monthly call from a provider to touch base about symptoms and care. A person suffering from bone cancer might need more palliative intervention, he said.

A sustainable payment model based around metrics will, in Baird’s view, improve the quality and delivery of palliative care.

“I think we do need a formal test of a standalone community, or home- and community-based palliative care payment and delivery model, that the government needs to fund,” he said.

There is legislation being considered that would require the CMS Innovation Center to test this kind of model. But there is no guarantee it will pass.

That, Baird said, boils down to educating Congress on the cost-saving benefit of good palliative care.

“I think it’s a lot of education on the congressional side,” he said. “ We need more data, though, on the cost as well, because for home- and community-based palliative care in particular, we just don’t have a lot of good, large-scale research about its financial impact. And I think that really will be critical for policy action.”

Education would also help with the conversation between payers and payees, Baird said.

An ongoing NIH study has shown there is a lack of understanding about palliative care.

“A lot of people don’t understand what palliative care is, let alone how to operationalize it,” Baird said. “And there needs to be much more of a proactive, front-end dialogue between providers and payers before launching into it so that both sides of that contract are going in with a clear understanding of what’s expected of them.”