Wisconsin is among the states that have recently taken steps to improve palliative care access and awareness.

Wisconsin legislators recently introduced a bill that would establish a statewide Palliative Care Council. If passed, the bill would require the state’s Department of Health Services (DHS) to create a group of palliative clinical professionals, patients and family members to help address care delivery issues in the field.

The council could help guide the development of public education aimed at dispelling widespread misconceptions about palliative care, according to Agrace President and CEO Lynne Sexten. Among the ultimate goals of the legislation is to improve not just awareness, but also utilization of palliative care, Sexten said.

“The purpose of the council would be to study ways to increase awareness and usage of this highly valuable type of care,” Sexten told Palliative Care News in an email. “In addition, it would help educate Wisconsinites about what palliative care does. Palliative care is often misunderstood and confused with hospice care. Palliative care is not end-of-life care.”

Sexten also serves as board chair of the Wisconsin Hospice & Palliative Care Association (WiHPCA). If passed, the bill could help improve quality outcomes and elevate awareness around palliative care services, Sexten said in a recent WiHPCA statement.

The bill proposes the council to consult on four main issues:

• Outcome evaluation of established palliative care programs in the state
• Economic and quality efficacy of palliative care provided alongside curative treatments
• Mechanisms for and adequacy of reimbursement for palliative care services
• Any other issues relating to palliative care arising at council meetings or discussions

The State Assembly approved the bill and sent it to the Senate. The legislation is now under review by the Senate Government Operations Committee, according to the Wisconsin Legislature. The bill received bipartisan support.

The bill proposes to create the Palliative Care Council made up of 22 members representing diverse perspectives. Council members would include members of the legislature, along with palliative care patients and family members, physicians, nurses, a spiritual care professional and a health insurance company representative with expertise in palliative care, according to Sexten.

Access to clinic- and home-based palliative care is “extremely limited” with widespread variation across the state, Sexten said. Agrace provides hospice and palliative care across 19 counties in southern Wisconsin. Established in 1978, the nonprofit also offers adult day and advance care planning services, memory care and grief support, among others.

The access issues are multifactorial, according to Sexten. Less than a dozen health care organizations provide community-based palliative care, including Agrace, she stated. Much of the palliative care is currently provided in larger hospital settings, Sexten said.

Additionally, workforce shortages have led to smaller pools of palliative care professionals available to provide care, Sexten indicated. On average, Wisconsin has only four palliative care providers per 100,000 residents in the state of Wisconsin, she said.

If approved, the legislation could help shape future palliative care policies in the state, according to Alisa Gerke, executive director at Unity Hospice & Palliative Care. The hospice and palliative care provider serves adult and pediatric populations across 13 counties in northeast Wisconsin. Many of Unity’s service regions are rural, with large geographic areas that are often difficult to span with enough palliative care providers, Gerke stated.

“This council will be an advocacy and educational body, hopefully a resource for developing future supportive care management,” Gerke told Palliative Care News. “It could be impactful in shaping what reimbursement and access look like and how we educate and improve rules and regulations that go around this care delivery. We think it’ll provide great value to the DHS in that consultative role to help show them the outcomes and help guide and tweak the overarching development of programs across the state.”

Having a council of palliative care professionals and patients can help provide valuable insight into the main barriers to these services, including access challenges, Gerke said.

A greater understanding of the issues could impact how palliative care programs develop in the state, including shaping reimbursement and quality measures, she indicated. Among the greatest challenges in palliative care delivery is a lack of sufficient reimbursement channels, which can affect quality outcomes if not enough support exists to provide care, Gerke said.

“One of the council and the DHS’ greatest challenges is how we’re going to be in the world of reimbursement,” Gerke said. “Right now, there’s very little reimbursement to take care of palliative patients. Most of these rates do not even cover the base costs of the organization providing the care. That’s definitely going to be a struggle to think about and establish what that reimbursement looks like in order to improve quality of life and take off that financial burden. It becomes a worry of sustainability if the economic impact is such that the programs getting started will fold because of a lack of reimbursement.”