Stretching back more than a decade, a rising number of states have passed laws designed to raise awareness of hospice and palliative care, but to date, few if any have achieved measurable results.
The reasons for this run the gamut. During the past two years, for instance, state governments and health care organizations have been almost unavoidably focused on the COVID-pandemic.
But even before the outbreak, few of these legislative mandates had any funding attached to support the work. Moreover, underfunded and understaffed health agencies often lack the resources to implement recommendations from the expert panels that some of these laws established.
Despite apparent flaws in execution, the stakeholders behind these laws — and those charged with implementing them — come to the table with the good intentions of improving patient outcomes and reducing costs, according to Wendy Fox-Grage, senior policy fellow for the National Academy for State Health Policy (NASHP).
“States are looking for solutions that people want. It’s the kind of care that they want, that listens to their preferences and cuts out the care they don’t want — the unnecessary hospitalizations,” Fox-Grage told Hospice News. “Palliative care does that. There’s such a great need to get the word out and provide the education that’s necessary for this kind of care.”
Five flavors of palliative care laws
While each state tends to adopt its own approach, symmetries do exist.
Palliative care awareness laws generally come in five “flavors” that range in complexity, according to Stacie Sinclair, associate director for policy and care transformation at the Center to Advance Palliative Care (CAPC).
Some states offer hospice- and palliative care-themed license plates or designate an official Hospice and Palliative Care Awareness Month. Others, such as New Jersey, Wisconsin, Oregon, and Florida, require certain providers to inform patients of those health care options in particular circumstances.
Another contingent of laws directs state agencies to develop their own awareness campaigns. New York state recently approved a law to this effect, and about a dozen others have taken similar action, according to NASHP.
However, these campaigns often conflate hospice with palliative care and/or advance care planning, according to Fox-Grage.
One common approach is to establish an advisory council to study related issues and make recommendations to state agencies on further action. Currently, 25 states have passed legislation creating such advisory groups, NASHP reported.
States take swings and miss
Oregon passed a law in 2015 to create its Palliative Care and Quality of Life Interdisciplinary Council. Among the applicants to join the council was Barbara Hansen, CEO of the Oregon Hospice & Palliative Care Association, who became a member in 2018.
The Oregon advisory group began producing a website to inform health care providers about palliative care, with a particular focus on long term care organizations. They also developed a booklet with related educational materials.
But the group hit a number of roadblocks. For starters, they had no funding. Work also began to slow when COVID struck in 2020, and the council’s plans for quarterly meetings fell to twice a year.
“We just haven’t had a lot of work product. That’s what has been so frustrating to me,” Hansen told Hospice News. “At this point, we were spinning our wheels quite a bit trying to develop this resource that perhaps really wasn’t wanted by long term care facilities, or at least they didn’t perceive that they needed it.”
Councils in other states also hit barriers.
The Commonwealth of Massachusetts assembled its Expert Panel on End-of-Life Care in 2009, which made policy recommendations in a March 2011 report. In 2012, the legislature also approved a requirement that health care providers inform patients with a terminal prognosis of six months or less about hospice and palliative care.
Subsequent legislation created the Massachusetts Department of Public Health Interdisciplinary Advisory Council on Palliative Care and Quality of Life, which held its first meeting in December of 2015.
A group of clinicians and other experts comprised the advisory council. They quickly set to work developing policy recommendations for the Massachusetts Department of Public Health (DPH), but members found that the actions they called for were often lost in the bureaucratic shuffle, according to the council’s chairman, Dr. Lachlan Forrow.
“We had some concrete issues for which we were then making recommendations to DPH, including some related to advanced care planning and others,” Forrow said. “My sense is that it was frustrating. Bureaucracy is byzantine. DPH is grossly understaffed, and they were dealing regularly with emergency after emergency. Then, in early 2020 COVID hit right when we were supposed to renew appointments of members of the advisory council, and that got lost.”
Forrow is a general internist and director of ethics and palliative care programs at Boston’s Beth Israel Deaconess Medical Center and an associate professor of medicine at Harvard Medical School.
Despite voicing frustration, Forrow pointed no fingers at DPH, acknowledging the difficulty of the agency’s work and its limited resources. Nevertheless, the council has not met in about three years, he said.
But the story in Massachusetts didn’t end there.
Almost concurrently with the state’s advisory council, a contingent of health care stakeholders formed their own group to advance access to hospice and palliative care. Called the Massachusetts Coalition for Serious Illness Care, this is a completely independent, private network of organizations and individuals working to improve hospice and palliative care access and awareness.
“Even though we have not had an official meeting of the DPH Advisory Council in three years, we are still accomplishing the spirit and the functions for which the advisory council was designed, without the actual structured meetings in the statute,” Forrow said.
Initiatives like advisory councils and awareness campaigns may have better success if they are backed by dollars in their states’ budgets and have a framework for measuring results.
Most of these laws do not come with funding. Typically, the councils are staffed by volunteers who do what they can with little to no resources to draw on.
CAPC’s Sinclair is the vice chair of Nebraska’s Palliative Care Task Force, formed by a state law passed in 2017. Members of the task force have devoted their volunteer hours to fulfilling their mandate to recommend best practices, leaving little time to stop and measure their impact.
The Nebraska task force was able to obtain some funds through a partnership with the American Cancer Society Cancer Action Network to complete, collect and disseminate their recommendations. But without dedicated financial backing, no part of the process was easy, Sinclair told Hospice News.
“If there isn’t even funding to do the work, then that ends up falling on the backs of committed, passionate, and talented volunteers. Often they’re putting a ton of work into it,” Sinclair said. “People are doing a great job. But without the funding to support it, it’s an uphill battle.”
Awareness without access
Nationwide, the uphill battle for palliative care in particular has a second front. Even if patients are informed and aware, many can’t get it.
While the availability of palliative care is improving, fewer than 5% of patients with serious illnesses who stand to benefit from palliative care actually receive it, according to a May 2019 report by the NASHP.
One of the most significant contributing factors is the lack of a robust payment model.
Currently, Medicare reimburses for palliative care physician and licensed independent practitioner services through fee-for-service programs that often do not sufficiently support the full range of interdisciplinary care.
In recent years, the U.S. Centers for Medicare & Medicaid Services (CMS) has allowed for some value-based reimbursement through Medicare Advantage supplemental benefits, as well as some palliative care elements included within the hospice component value-based insurance design model demonstration.
A range of stakeholders has called on Congress or the Center for Medicare & Medicaid Innovation to develop a payment model demonstration for a dedicated community-based palliative care benefit. Though some are optimistic, as of right now no such benefit exists.
If you build it, they will come
At the state level, a disconnect often exists between what policymakers say they want to achieve and what their states cover through their Medicaid programs.
“Medicaid payment for palliative care feels like the next frontier. In Nebraska, we aren’t there yet. We don’t have the workforce there. We don’t have the payment there. So we are not going to start crying from the rooftops that everybody needs to access palliative care,” Sinclair said. “We want to make sure that there is at least a feasible path so that we’re not leaving patients without services.”
Nebraska’s Palliative Care Task Force recommended in its report that the state begin exploring Medicaid reimbursement for palliative care, as have advisory councils in other parts of the country.
Thus far, California has been the exemplar in this regard.
The state’s 2018 Senate Bill 1004 (SB 1004), requires Medi-Cal managed care plans to cover palliative care for patients suffering from cancer, end-stage liver disease, chronic obstructive pulmonary disease, or congestive heart failure.
The benefit covers seven specific palliative services, including advance care planning, care coordination, pain and symptom management, palliative care assessments and consultations, access to an interdisciplinary care team, as well as mental health and medical social services.
California was the first in the nation to enact such a requirement, but a trickle of other states are moving in that direction. Hawaii recently began laying with groundwork with the CMS for building their own Medicaid benefit, Sinclair indicated.
Oregon is in the process of implementing a 2021 law requiring Medicaid reimbursement for palliative care, according to Hansen. It requires the state’s Coordinated Care Organizations (CCOs) to offer those services in the home setting. CCOs are akin, but not identical to, Accountable Care Organizations.
The Oregon Health Authority has convened a rules committee to build the regulatory framework for the program, including staff training requirements and other considerations, Hansen said.
“An advisory committee by itself isn’t going to achieve much in advancing palliative care unless there’s also a bill that requires the state to provide and cover palliative care,” Hansen told Hospice News. “You know the old adage, ‘If you build it, they will come.’ Well, if you pay for it, providers will come. Many programs who would be interested in providing it will want to have a sustainable model.”
Companies featured in this article:
American Cancer Society Cancer Action Network, Beth Israel Deaconess Medical Center, Center to Advance Palliative Care, Harvard Medical School, Massachusetts Coalition for Serious Illness Care, National Academy for State Health Policy, Oregon Hospice & Palliative Care Association