This spring, Kansas launched a five-year plan to make palliative care more accessible to its nearly 3 million residents.
The seeds of the plan were planted in 2018 when the legislature established the state’s Palliative Care and Quality of Life Interdisciplinary Advisory Council. The group was charged with advising the state Department of Health on establishing an effective, sustainable palliative care program, figuring out how to evaluate the effectiveness of that program and how to ensure residents – even those in the most remote parts of the state – had access to good palliative care.
Dr. Karin Porter-Williamson, division director for palliative medicine in the Department of Internal Medicine at the University of Kansas Medical Center, was a leading voice in establishing the advisory council.
“As palliative care comes to be recognized on the national scene, I think that has got people in Kansas starting to say, ‘What does palliative care look like here?’ And then realizing we have a lot of work to do,” she told Palliative Care News.
Kansas joins dozens of states that have formed an advisory council.
Stacie Sinclair, the associate director for policy and care transformation at the Center to Advance Palliative Care (CAPC), has worked with states ranging from New Jersey to Maine and Alabama on advancing palliative care. According to Sinclair, Kansas set up a top-tier advisory council.
“When I think about Kansas, I really do think of them as leading from a place of strength. That they have a lot of wonderful partnerships,” she told Palliative Care News. “I think there’s a level of integration there that we don’t always see.”
A plan with four pillars
The Kansas plan focuses on several key areas:
— Expanding broadband access and preserving policy changes for the delivery of telehealth services
— Incentive programs to recruit, train and retain palliative care clinicians; education on primary palliative care for all disciplines; and support for unpaid caregivers crucial to addressing the state’s palliative care workforce shortage
— Improving the state’s understanding of palliative care and how it differs from hospice
— Bringing advance care and serious illness planning to all Kansans so they can make informed choices about care, and express their wishes and preferences as a treatment plan is developed
Access was a high hurdle. Kansas is a big place – about twice the size of Ohio, for example, but home to about 3 million people compared to Ohio’s roughly 11 million residents.
Parts of Kansas are even designated frontier zones – sparsely populated areas geographically isolated from urban or population centers, according to the National Rural Health Association.
Telehealth is ‘not optional’
A survey of the state underscored the geographic challenges. Palliative care programs exist in urban areas, but most of Kansas is rural. The further into the countryside one travels, the greater the access challenges become.
Porter-Williamson cited a patient whom she sees regularly for palliative care. The patient lives six hours from her base in Kansas City and requires oxygen therapy. It would be impractical for that person to be seen face to face, she said.
Telehealth has been a lifesaver, she said.
“The term ‘convenient’ has been used for telemedicine and we’re really of the mind to say, ‘Well, it may be convenient, but that’s not the important part.’ It’s mandatory for access. It’s not optional,” she said.
The technology is bolstered by teams of people who train users on everything from logging into the platform to making sure the camera and microphone are working.
Telehealth also allows families, even those separated by miles of geography, to participate, helping to develop palliative care plans, Porter Williamson said.
Access is only one of the hurdles. A need exists for certified professionals who can help educate frontline, primary care physicians, nurses and social workers about palliative care, according to Porter-Williamson.
“And those are the basic sets of skills in symptom management, communication, how you help a patient and family navigate the health care system when they’re needing to access it more and they’re getting more seriously ill,” she said.
Kansas’ struggles to find certified palliative care professionals reflect a national problem.
For Sinclair, Kansas’ plan stands out because the state advisory council wrote goals and metrics into the plan. For example, Sinclair’s group at CAPC gave Kansas a C on a palliative care report card. Written into the plan: Improve that C to an A.
“Some of the performance measurements that the Council put down were to try and influence changing the report card grade to try and move that grade from a C to an A and to try and grow the number of certified palliative medicine physicians from a baseline of 21 to a target of 30,” Sinclair said.
Continuing advocacy
The metrics include advocating for legislation to ensure access to online platforms, tracking the number of certificate programs and monitoring traffic to the website to gauge public awareness of palliative care, according to Porter-Williamson.
Kansas’ effort now becomes part of the larger national conversation on palliative care.
Sinclair points to ongoing efforts by the National Academy for State Health Policy to inform policymakers about opportunities to support palliative care initiatives, as well as efforts by the Solomon Center for Health Law and Policy at Yale, which is helping track the various policies being developed around palliative care.
Those reports are collated in one place, giving states just starting what Kansas began in 2018 some best practices while forming their own advisory councils.
“So, we’re trying to get this holistic point of view about what policy options have been or what policies have been introduced for palliative care,” Sinclair said. “And obviously, the State Advisory Council legislation, where a lot of these reports are coming from, is one of the things that we track.”