A patient with chronic obstructive pulmonary disease who was a frequent emergency room (ER) visitor now has a plan to manage his symptoms and now avoids the ER. A family caring for a parent with Alzheimer’s was considering nursing home placement, but after learning how to address challenging behavioral symptoms now feels equipped to continue to care for their loved one at home. A young woman treated for breast cancer had been hospitalized multiple times for pain, but is now managing her symptoms and is back at work.
These and similar stories illustrate why state policymakers are increasingly interested in palliative care and its potential to improve the quality of life of individuals with serious and chronic illnesses, while also reducing unnecessary hospital utilization and cost of care.
Palliative care services are delivered alongside curative treatment and can include pain and symptom management, care coordination, and team-based, multi-disciplinary support. These services help patients and families cope with the symptoms and stressors of disease, better anticipate and avoid crises, and reduce unnecessary and/or unwanted care. While this model is grounded in evidence that demonstrates improved quality of life, better outcomes, and reduced cost for patients, fewer than 5 percent of individuals who could benefit from palliative care receive it.
Despite the alignment of palliative care with health policy goals, states face a number of challenges as they work to integrate palliative care across the health care continuum, including:
- Stigma that prevents providers, patients, and families from requesting/referring to palliative care;
- Workforce and provider capacity issues;
- Implementing and then sustaining these services through state health care systems; and
- Understanding the overall return on investment associated with palliative care.
In its research into state palliative care activities, the National Academy for State Health Policy (NASHP) has identified an overall lack of policy infrastructure to support state palliative care initiatives. Across the country, few models exist to help states implement and expand uptake of palliative care services.
To address these challenges, NASHP convened a cross-agency group of state policy leaders to provide guidance in developing a framework for how states, as agents of change, can foster access to quality palliative care services. While policy development is always driven by the varied goals and priorities of individual states, the following recommendations offer a roadmap to help policy makers identify state-specific opportunities, areas of alignment, and ideas to aid in future planning.
Recommendations to Promote Access to Quality, Palliative Care
Recommendation 1: Educate policymakers, providers, and the public about the role and value of palliative care across the health care continuum.
Lack of familiarity, discomfort with the topic, and stigma can inhibit providers from offering palliative care, and can prevent families and patients from asking for services that can support their individual goals and quality of life. States can use public health and other health system infrastructures to promote understanding and acceptance of palliative care services. In recent years, many states have created cross-disciplinary task forces and passed legislation to educate providers and the public. Minnesota, for example, has established a palliative care website that offers information and resources to the public about what palliative care is and why is it important.
Other states have instituted policies that require providers to identify and reach out to individuals who may benefit from palliative care. Vermont requires providers to demonstrate competency in identifying and engaging patients who could benefit from palliative care. Educating providers, who often have long-standing relationships with patients and their families and are able to coordinate with other community resources, places them in an ideal position to assist patients at a time when they are especially vulnerable.
Recommendation 2: Use state policies and regulations to help define palliative care services and standards, and distinguish it from hospice services.
While hospice care is offered near the very end of life, palliative care, importantly, can be delivered alongside curative treatment. Statutory or regulatory definitions that limit palliative care to the end of life can prevent access to these services. States can define palliative care in their regulation and licensing requirements to address this. Colorado’s licensing standards for hospitals and providers define palliative care as “focused on providing patients with relief from the symptoms, pain, and stress of serious illness, whatever the diagnosis… Palliative care is appropriate at any age and at any stage in a serious illness and can be provided together with curative treatment.”
States have a range of policy options to define and describe palliative care, including state Medicaid plans, waivers, managed care contracts, and provider reimbursement manuals. In crafting regulations, state policymakers may consider how palliative care services fit into their states’ care continuum and relate to other strategies and initiatives (e.g., enhanced primary care models, long-term services and supports, etc.) States may also need to tailor definitions of palliative care depending on policy goals – some definitions may be fairly detailed (e.g., for a specialty palliative care benefit with an enhanced payment), while other policies are better served by broad guidance (e.g., for public messaging).
State leaders also cautioned that regulating must take into account the evolving field of palliative care, and the need to support growth and workforce. Working with stakeholders to develop capacity may be a necessary first step. As states define their goals related to palliative care, they can then consider how/if current licensure or other regulations support or impede this work.
Recommendation 3: Promote evidence-based standards and practices across a variety of settings and across the lifespan.
Palliative care is an evolving field with diverse services and models for children and adults delivered in home and community settings, hospitals, and nursing facilities. The recently revised Clinical Practice Guidelines for Quality Palliative Care offers a consensus-driven, nationally recognized resource for state policymakers interested in understanding the key features ofhigh-quality palliative care services.
States can foster this high-quality care through policy activities such as disseminating guidance for providers, adopting practice standards in licensing or payment regulation, and embedding palliative care in value-based purchasing models or managed care contracts. New York’s Palliative Care Education and Training Council provides resources and guidance to providers on evidence-based palliative care practices and therapies, and has developed recommendations for provider education and training. Maryland’s hospital licensing regulations outline staffing and other standards that hospitals in that state must adhere to. Regulations require programs to be marketed to patients and families, meet specific staffing and training requirements, develop an inter-disciplinary care plan for each patient, and complete Medical Orders for Life-Sustaining Treatment forms in accordance with state law.
Recommendation 4: Identify quality measures and reporting strategies to improve access to and quality of palliative care.
Effective measurement is an important tool to promote quality and incentivize the delivery of palliative care services. However, comprehensive measurement for palliative care services, at either a practice or systems level, is an emerging area. The National Committee for Quality Assurance has 36 measures relating to serious illness care, measuring domains such as management of physical symptoms, pain assessment and management, and advance care planning. However, these measures may not be validated for all settings or payers, and the organization notes that “most community-based serious illness care delivered outside hospice or home health benefits is not subject to performance measurement designed to address the quality of care.”
Despite these challenges, at least five states currently include palliative care-related metrics or quality improvement requirements in their Medicaid programs. These measures are generally part of targeted initiatives that reach a subset of the total Medicaid populations – Colorado, Illinois, New York, and Rhode Island include at least one palliative care-related quality metric in their financial alignment demonstration or Medicaid long-term services and supports contracts. Both New York and Texas incorporated palliative care into quality improvement strategies in their Delivery System Reform Incentive Payment (DSRIP) waivers. Under Texas’ DSRIP Measure Bundle Protocol, hospitals, physician practices, community mental health centers, and local health departments can elect to report on eight palliative care metrics to earn incentives. The goal of the program is to better coordinate care and transition patients from acute hospital care into home care, hospice, or a skilled nursing facility.
Recommendation 5: Develop strategies to build capacity.
Palliative care access can be limited due to a lack of trained providers, especially in rural areas and in smaller hospitals. To increase availability of services, states may consider a range of options:
- Rhode Island and other states require physicians to complete at least four hours of continuing medical education every two years on priority topics that include end-of-life and palliative care.
- California recommends its managed care plans contract with Medicaid providers with palliative care training, and partners with California State University’s Institute for Palliative Care to offer palliative training to Medicaid providers and practice staff.
Building on systems that can support palliative care may be another way to foster access. New York’s DSRIP program had an uptake of palliative care services within patient-centered medical homes, a model supported by many states that features team-based, multi-disciplinary care. Health home state plan options for individuals with serious or chronic illness may provide future opportunities. Telehealth in rural or under-served areas can offer another tool to broaden the reach of palliative care services – models and payment strategies for states to support these modalities are still emerging.
Recommendation 6: Develop sustainable reimbursement.
Medicaid programs – bound by state balanced budget requirements – have different approaches to how they pay for palliative care. Sustainable reimbursement can incentivize greater access, and can also provide the state with additional levers to track, understand, and improve the delivery of palliative care services. States can consider using existing fee schedules or codes, creating specialized payment models (e.g., capitation, bundled payment, case rates), or using health plan contracting to promote reimbursement for palliative care services.
In Arizona, a recent Arizona Health Care Cost Containment System (state Medicaid) policy change made palliative care available to most of its Medicaid population, including those enrolled in fee-for-service managed care and managed long-term services and supports plans. California recently established palliative care standards for its Medicaid (Medi-Cal) managed care health plans that provide access for all age groups and include disease-specific criteria to target the benefit (e.g., congestive heart failure, chronic obstructive pulmonary disease, advanced cancer, or liver disease). NASHP’s report, Advancing Palliative Care for Adults with Serious Illness: A National Review of State Palliative Care Policies and Programs illustrates the various ways that states can support palliative care services.
States may also target their limited resources by including palliative care services in more specialized Medicaid policy vehicles, such as Programs of All-Inclusive Care for the Elderly (Florida, Iowa), financial alignment demonstrations for individuals dually eligible for Medicare and Medicaid (Michigan, New York, and South Carolina), and Medicaid managed long term services and supports.
Recommendation 7: Identify opportunities to incorporate palliative care into state health care reform efforts.
State health reform efforts increasingly focus on providing comprehensive and well-coordinated care to high-need populations – such as those with chronic or serious conditions – as a way to improve quality and drive down costs. Palliative care is a natural complement to this work. As payment and delivery system innovations evolve, states can look for emerging opportunities to incorporate and expand palliative care initiatives that:
- Value person-centered planning;
- Improve care coordination; and
- Seek to help older adults and others with significant health care needs remain in their homes and communities.
Palliative care and its whole-patient approach is an evidence-based strategy that improves the care of people with serious illness, often while realizing savings and avoiding unnecessary care. For both states and patients with chronic or serious illness, palliative care adds value. These recommendations offer an initial framework for states to advance the uptake and quality of palliative care services in their delivery systems. In the coming months, NASHP and state policy leaders will showcase successful state strategies to put these recommendations into practice.