Access to palliative care for people with serious illness, i.e., those with serious medical conditions, functional impairment, and high health care utilization, has expanded greatly over the last decade due to a rapidly increasing aging population with complex and costly care needs; a growing evidence base demonstrating that palliative care improves patient and caregiver quality of life and reduces overall cost; and an accelerated transition to payment models that reward value over volume.

As the new administration strategizes how to repeal and replace the Affordable Care Act (ACA)—and how to shift risk and responsibility for health care payment to states, health care organizations, commercial payers, providers, and patients and families themselves—we expect state policy to play a more dominant role in determining who gets care, how it is paid for, and how to set and achieve a standard of quality and safety. Of great concern is the impact of a potentially destabilized insurance market that could lead to loss of coverage for people with the greatest need for health care services, such as those with serious illness. Outcomes for this group are especially important as a majority of the seriously ill fall into the top 5 percent of the population that accounts for 50 percent of total health care expenditures.

Given the states’ role in funding safety-net programs, as well as the fact that historical precedent and early signs indicate a push towards both more privatization of Medicare and Medicaid and greater state control in health care delivery and payment, states should consider levers to expand local access to palliative care.

The Value of Palliative Care

Palliative care is specialized, multi-disciplinary care focused on relieving the pain, symptoms, and stress of serious illness. It can be provided regardless of diagnosis or prognosis, and has been shown to be particularly effective if it is delivered early in the disease trajectory. Over the last decade, a multitude of studies have shown the benefits of palliative care, including improved quality of life, reduced patient and caregiver burden, and an overall reduction in total health care costs. Thanks to the work of key organizations, there has been a significant increase in the availability of palliative care, particularly in large hospitals. However, gaps in access remain, the consequence being that many people with serious illness are not able to receive this kind of person-centered care when it is most needed.

States in particular should care about palliative care because, as the primary insurer of long-term care through Medicaid, they often bear the responsibility for at least a portion of costs for their aging citizens. They also cover a significant percentage of care for seriously ill children through Medicaid and the Children’s Health Insurance Program (CHIP). Furthermore, serious illness can take an emotional and financial toll on family members and caregivers, which can create an additional burden on state resources. Palliative care can bend the health care cost curve for states by reducing unwanted and unnecessary care and helping avoid emergency department visits due to preventable crises; it accomplishes this by asking people what matters most to them and modifying their care accordingly, supporting family and other caregivers, ensuring expert pain and symptom management, and providing 24/7 access. As the need for greater access to palliative care is better understood, more states are creating policies intended to support its quality and expansion.

State Levers to Expand Palliative Care Access

States retain tremendous authority over health care through regulation of clinicians, facilities, and insurance; through public health campaigns and surveillance; and as a major purchaser of health care. It should be noted that laws affecting palliative care come in many forms, and policies that are not directly targeted at palliative care can nevertheless have strong effect (e.g., patient bills of rights laws).

Many states have successfully passed advance care planning laws, which range from living wills and surrogate decisionmaking to do-not-resuscitate (DNR) orders and Physician Orders for Life-Sustaining Treatment (POLST). Completion of advance care planning forms can help elicit the conversations necessary to provide high-quality palliative care; however, these policies are beyond the scope of this blog post. For the purposes of this review, we look solely at examples of policies and initiatives that target increased access to palliative care.

Regulation over Facilities

Policies related to the regulation of health care facilities have come from both the legislative branch and the administrative branch. Thus far, these policies have typically involved requiring that information on palliative care be made available to patients with serious illness. For instance, in 2010 and 2011, New York enacted a pair of information acts (Public Health Law sections 2997-c and 2997-d) that required physicians to offer information about palliative care to those newly diagnosed with a terminal illness and required facilities to adopt policies and procedures to provide patients with information about palliative care and to facilitate access to it. The New York Department of Health published resources on its website regarding the laws, and sent a “Dear Administrator letter” to facilities.

More recently, Massachusetts passed S 2400, which requires licensed hospitals, skilled nursing facilities, health centers, and assisted living facilities to identify patients and residents who could benefit from palliative care and distribute information regarding its availability. The state promulgated regulations to implement the law and developed a pamphlet translated into nine languages to help facilities meet the obligation to inform patients about palliative care. Oregon also recently passed SB 608, which includes a similar requirement for hospitals, long-term care facilities, and residential care facilities to inform patients about palliative care. The state is in the process of building out its website to provide more resources.

Regulation can also take the form of consumer protection. As the benefits of palliative care become better known, more consumers are interested in finding facilities that have palliative care programs. Colorado has taken a first step in ensuring the quality of these programs by adopting a 2014 regulation that specifies standards for facilities that provide palliative care. The standards require these programs to develop policies and procedures addressing how services such as assessment and management of pain and symptoms, goals of care and advance care planning, psychosocial and spiritual support, and other aspects of care will be provided and documented.

Regulation over Clinicians

Many states have used their authority over professional licensure to increase access to palliative care, or the elements thereof, by making sure more providers have the knowledge and skills to deliver it. Several states, for example, have mandated continuing education credits in pain management — a critical aspect of palliative care for people with serious illness. One such state was California, which passed AB 487, mandating that all physicians and surgeons (with the exception of those practicing in pathology or radiology specialty areas) complete 12 hours of continuing education courses in pain management and the “treatment of terminally ill and dying patients.” A later study of the effectiveness of this law found that many physicians reported changing their practice as a result of these courses.

Recently, states have started to recognize the role that palliative care can play in addressing issues in substance use disorder and diversion. In 2016, New York passed A 355, which required that health care professionals who prescribe controlled substances complete three hours of course work or training in pain management, palliative care, and addiction. This law is set to take effect July 1, 2017. It is possible that as more states grapple with the consequences of opioid misuse, legislatures may look to education in safe and effective opioid prescribing as a policy option for reducing misuse without restricting access to pain management for those who need it.

Surveillance on Access to Care

States play a critical role in conducting surveillance of public health issues. One of the most notable trends is the creation of interdisciplinary Palliative Care Advisory Councils, task forces, or similar bodies that assess state palliative care capacity, identify existing resources, and make recommendations on how to ensure consumer protection. Currently, 16 states ranging from New Hampshire (SB 259) to Indiana (SB 272) have laws establishing these Advisory Councils, and an additional seven states introduced comparable bills during their most recent legislative sessions.

For many states, the American Cancer Society Cancer Action Network (ACS CAN) has been a critical partner in this work by providing the draft language, convening stakeholders, and helping craft a bipartisan legislative strategy. Once established, several Advisory Councils have helped populate state websites with palliative care resources (e.g., Rhode Island, Vermont) and published reports with findings and recommendations for the legislature (e.g., Connecticut). And legislation is not the only means to establishing these groups — in late 2015, Florida’s then-Surgeon General used his authority to create a Palliative Care Ad Hoc Committee (PCAHC) to serve as an advisory body to the Florida Department of Health, and evaluate current palliative care initiatives in the state. The PCAHC found that a majority of Florida’s counties had less than 50 percent sufficiency (defined as palliative care capacity divided by estimated need) in both inpatient and outpatient settings in 2015. Recommendations in the committee’s final report included strengthening minimum standards for palliative care, increasing training opportunities for clinicians, and providing education on palliative care to the public and health care sector.

State policymakers can also take steps to assess the availability of palliative care in their states through legislative or executive order. In 2013, Maryland passed HB 581 which was originally drafted to require that hospitals with 50 or more beds implement a palliative care program while the Department of Health and Mental Hygiene developed regulations that would set standards for these programs. However, legislators decided to start by studying established palliative care programs in the state to learn more about the target population, scope of services, and intended outcomes. As a result, the Maryland Health Care Commission conducted a pilot study of 11 programs in geographically diverse hospitals, and developed a final report that included 37 best practices for palliative care programs in the state. California took a different approach to tracking the availability of inpatient palliative care programs through its “Let’s Get Healthy California” initiative. Established by the Governor in 2012, the original task force included palliative care as a key component of one of its strategic priorities, “Health Across the Lifespan.” Although the goals have been modified in recent years, the state continues to track the percentage of hospitals offering inpatient palliative care, which has increased from 37.3 percent in 2012 to 51.9 percent in 2016.

Payment Policy

Some of the most effective policies regarding palliative care come through the state’s role as a purchaser of health care through the Medicaid program. One of the most common state policies is that of implementing a pediatric palliative care program or pilot. As part of Massachusetts health care reform in 2006, the state established a Pediatric Palliative Care Network that provides a range of palliative care services to children with life-limiting illnesses and their families regardless of their prognosis. An early review of the program demonstrated steady uptake among children with life-limiting conditions, and positive (although not statistically significant) satisfaction rates. This program continues to be funded as a line item in the state budget.

States also have the option of applying for waivers from the Centers for Medicare and Medicaid Services (CMS) that would allow them to provide hospice and palliative care services concurrent with treatment to children enrolled in Medicaid. In 2006, California submitted a 1915(c) waiver as part of AB 1745 (also known as the Nick Snow Children’s Hospice and Palliative Care Act), creating the Partners for Children program. An evaluation of the three-year pilot found that concurrent palliative care provided to children with life-limiting or life-threatening conditions resulted in an average reduction of $2,154 in Medicaid spending per enrollee per month (including administrative costs), significant decreases in the number of inpatient days, and an increase in caregiver satisfaction. More recently, Vermont expanded its 1115(a) waiver, to establish a Pediatric Palliative Care Program that offers services such as care coordination, family/caregiver training, and expressive therapies to medically eligible children and adolescents up to the age of 21. This waiver was recently extended through 2021.

States are also beginning to develop palliative care benefits for Medicaid-eligible adults with serious illness. The highest profile example is again California, which passed SB 1004 requiring the Department of Health Care Services (DHCS) to “establish standards and provide technical assistance for Medi-Cal managed care plans [MCPs] to ensure delivery of palliative care services.” Over the last two years, DHCS has collaborated with numerous stakeholders across the state to create the benefit, including specifying eligibility criteria, required services, and performance measures. As of publication, the state was finalizing an All-Plan Letter to send to its MCPs.

Meanwhile, South Carolina, as part of its dual-eligible capitated model demonstration with CMS (“Healthy Connections Prime”), has been testing a palliative care benefit for its dual-eligible population. Services will focus on pain management and comfort care, and plans will be required to report on the total number of eligible beneficiaries, as well as those receiving palliative care services. Finally, as part of its Delivery System Reform Incentive Payment (DSRIP) program, New York has included two projects on palliative care integration into patient-centered medical homes and skilled nursing facilities. Eleven Performing Provider Systems (PPSs) across the state are now in the process of implementing these projects, with the goal being to make palliative care available to seriously ill beneficiaries earlier in the disease trajectory.

Conclusion

The policies discussed in this Blog post are intended to serve as a framework for policymakers and other stakeholders interested in doing more to support palliative care in their states. Here are a few considerations for those interested in exploring potential options:

  1. None of the policies and initiatives described above would have been possible without efforts from key stakeholders such as the state hospice and palliative care associations, and local funders, researchers, and advocates. Champions such as Colorado’s Center for Improving Value in Health Care (CIVHC), the Coalition for Compassionate Care of California (CCCC), the California Health Care Foundation (CHCF), and the Hospice and Palliative Care Association of New York State (HPCANYS)—as well as the aforementioned ACS CAN—been indispensible in furthering the state palliative care agenda.
  2. While each of the policies described can be beneficial in increasing awareness of palliative care and creating a foundation for future action, they will be most effective if enacted as part of a multipronged approach. For instance, public education around palliative care will increase access only if there are clinicians with the knowledge and skills to provide those services and the mechanisms exist to pay for them.
  3. Few of the policies described have included an enforcement mechanism or funding for implementation and evaluation. This has created a need for some states to be creative around planning activities and securing additional resources. Champions should factor this in when considering how to craft and support implementation of any future legislation.

States relatively new to palliative care should consult the Center to Advance Palliative Care’s (CAPC) most recent State-by-State Report Card, as well as the National Palliative Care Registry™, to learn about where they stand in regards to palliative care access, and find additional recommendations on how to get started.