Recommendations

A Call to Action: Accelerating Progress in Palliative Care Policy

Since the last State-by-State Report Card was published (2015), the palliative care field has made steady progress across multiple domains, thanks in part to supportive policies from Congress, federal agencies, and state governments, as well as generous private sector investments. However, prevalence varies based on geography and hospital characteristics such as size and tax status. Leaders in the public and private sectors can take specific actions to standardize access to timely and high-quality palliative care services and move U.S. health care to a system that reliably meets the needs of people living with a serious illness, and their families.

Policy Progress over the Past Four Years

WORKFORCE GROWTH

Since the formal recognition of palliative care as a medical subspecialty in 2008, the field has grown to include 7,618 board-certified palliative care physicians,22 and more than 18,000 palliative care–certified nurses.23 The Social Work Hospice & Palliative Care Network (SWHPN) released a palliative care certification program in 2018, and specialty training and certification opportunities now exist for chaplains, physician assistants, and pharmacists.

PAYMENT REFORM

In the last three years, Medicare has made changes to allow specific payment for advance care planning and complex chronic care management. The Center for Medicare and Medicaid Innovation (CMMI) began testing new models that expand access to palliative care specialists, including the Oncology Care Model and the Medicare Care Choices Model. The Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act, passed as part of the Bipartisan Budget Act of 2018, will allow Medicare Advantage (MA) plans to pay for social supports as well as in-home palliative care services for specific populations. Value-based insurance design may also provide a payment platform for non-hospital palliative care.

QUALITY, STANDARDS, AND RESEARCH ADVANCES

In 2015, the National Quality Forum (NQF) established a Palliative and End-of-Life Care Standing Committee (changed to the Geriatrics and Palliative Care Standing Committee in 2018) to rigorously scientifically review and endorse quality measures for older adults and those with a serious illness. In 2018, the Centers for Medicare and Medicaid Services (CMS) contracted with the American Academy of Hospice and Palliative Medicine (AAHPM) to develop new palliative care quality metrics to help fill measurement gaps identified by NQF. In 2018, the fourth edition of the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care was published, updating existing guidelines and establishing new standards and expectations for all health care professionals caring for people living with a serious illness, and their families. In the areas of research, the National Palliative Care Research Center and the National Institutes of Health (NIH) published white papers on palliative care research funding priorities, followed by a series of NIH program announcements encouraging submission of palliative care research projects. Concurrently, the Patient-Centered Outcomes Research Institute (PCORI) directed roughly $100 million to palliative care research, comparing the effectiveness of different delivery strategies across providers, settings, and modalities.

ENHANCED CLINICIAN SKILLS

Recognizing that nearly all clinicians care for patients living with a serious illness, several states passed laws for continuing education requirements in pain management, safe opioid prescribing, and palliative care. Several private health plans are beginning to require clinician training in core palliative care knowledge and skills as a component of their incentive programs for hospital quality.

INCREASED PUBLIC AWARENESS AT THE STATE LEVEL

As of publication, twenty-eight states have established Palliative Care Advisory Councils (or similar bodies) that are charged with increasing awareness of palliative care. Activities include developing websites to provide palliative care information to state residents, analyzing state-level access to palliative care, and providing state governments with recommendations for future policy action.

Remaining Gaps

Despite this progress, people living with a serious illness still do not have reliable access to palliative care. To ensure this access, policymakers must overcome persistent gaps and challenges.

WORKFORCE

Inadequate workforce and workforce pipeline to meet the needs of patients living with a serious illness, and their families

PAYMENT

Insufficient financing and financial incentives to ensure equitable and reliable access to palliative care for all people living with a serious illness

QUALITY, STANDARDS, AND RESEARCH

Lack of accountability for access to high-quality care delivery for patients with a serious illness; gaps in the evidence base to build the science guiding clinical practice

CLINICIAN SKILLS

Insufficient clinician training in communication; pain and symptom management; family assessment and support; and care over time and across settings

PUBLIC AND CLINICIAN AWARENESS

Continued lack of knowledge about the benefits of palliative care and who can benefit from it

 

Leaders in both the public sector (particularly those who oversee Medicare and Medicaid) and private sector (private health plans, purchasers, and accountable care organizations) can take specific actions to address these issues.

  • Federal Legislation

  • 1
    Workforce

    • PASS the Palliative Care and Hospice Education and Training Act (PCHETA), which—among other things—establishes:

      • grants to medical schools and teaching hospitals for career development awards
      • workforce development and fellowships for doctors, nurses, and social workers
      • career incentive awards for nurses, social workers, chaplains, and others

      On July 23, 2018, the full House of Representatives passed the Palliative Care and Hospice Education and Training Act (PCHETA) by voice vote. This was the result of years of education by stakeholders in the field, as well as leadership by members of Congress and their staffs. PCHETA (H.R. 647) was reintroduced in the 116th Congress in 2019.

      Who should act?
      Congress
    • ESTABLISH loan forgiveness programs for clinicians who work as palliative care specialists.

      Who should act?
      Congress
    • EXPAND Medicare-funded graduate medical education (GME) slots to train medical professionals, with provisions specifically for palliative care fellowships.

      Who should act?
      Congress
  • 2
    Payment

    • ELIMINATE Medicare beneficiary cost sharing for patient-centered services such as advance care planning and chronic care management, and evaluate the impact of these changes. Beneficiary copayments have been identified by clinicians and patients alike as a barrier to accessing necessary services. Previous legislation has successfully removed beneficiary cost sharing for high-value services such as evidence-based screenings and immunizations and could be replicated for services such as advance care planning.

      Who should act?
      Congress
    • REVISE Medicare Conditions of Participation for hospitals and skilled nursing facilities to incorporate the availability of specialty palliative care teams meeting quality standards. Alternatively, incentivize palliative care team availability for these facilities.

      Who should act?
      Congress
    • CREATE and expand existing Medicare alternative payment models driving improved quality of care, quality of life, and health outcomes in patients with a serious illness. Ensure that all models allow concurrent palliative care and disease treatment.

      Who should act?
      Congress
    • MODIFY the Medicare home health benefit eligibility—which currently requires that patients be “homebound” and have a “skilled need”—to include patients with certain characteristics (such as functional or cognitive impairment) to improve access to home health services.

      Who should act?
      Congress
    • REMOVE restrictions on telehealth for Medicare beneficiaries with a serious illness.

      Who should act?
      Congress
  • 3
    Quality, Standards, and Research

    • PASS PCHETA, which enhances the National Institutes of Health (NIH) research in palliative care.

      In 2018, the Labor and Health and Human Services (L/HHS) Appropriations bill urged the NIH to develop and implement a trans-Institute strategy to expand and intensify national research programs in palliative care to address quality of care and quality of life for the rapidly growing population of individuals in the United States living with a serious illness.

      Who should act?
      Congress NIH
  • 4
    Clinical Skill Building

    • CREATE a grant program to fund targeted clinical training in the care of people with a serious illness.

      Who should act?
      Congress
  • 5
    Public and Clinician Awareness

    • PASS PCHETA, which establishes a national palliative care education and awareness campaign to educate patients, caregivers, and providers about the benefits of palliative care.

      In 2018, the L/HHS Appropriations bill encouraged the Agency for Healthcare Research and Quality (AHRQ) to consult with relevant stakeholders to develop and disseminate information to patients, families, and health professionals about palliative care as an essential part of the continuum of quality care for people living with a serious illness.

      Who should act?
      Congress AHRQ
  • Federal Regulation

  • 1
    Payment

    • ELIMINATE Medicare beneficiary cost sharing for patient-centered services such as advance care planning and chronic care management and evaluate the impact of these changes.

      Who should act?
      CMS
    • CREATE and expand existing Medicare alternative payment models driving improved quality of care, quality of life, and health outcomes in patients with a serious illness. Ensure that all models allow concurrent palliative care and disease treatment.

      In April, 2019, CMMI released the Seriously Ill Population option under a new primary care alternative payment model.

      Who should act?
      CMMI
    • MODIFY the Medicare home health benefit eligibility—which currently requires that patients be “homebound” and have a “skilled need”—to include patients with certain characteristics (such as functional or cognitive impairment) to improve access to home health services.

      Who should act?
      CMS
    • INCLUDE functional and cognitive status as a distinct element in premium risk adjustments in Medicare Advantage (MA).

      Understanding a patient’s functional status is a crucial factor in identifying who is appropriate for palliative care and in developing a care plan that best meets their individual needs. In 2018, the Government Accountability Office (GAO) released a report showing the relationship between functional status and actual spending for MA members. This GAO report called for functional abilities to be factored into MA risk adjustment.

      Who should act?
      CMS
    • EXPLORE additional regulatory flexibility to expand tele-health access for people with a serious illness who are in the traditional Medicare program.

      Telehealth can significantly expand access to palliative care for people living with a serious illness. Recent policy changes to advance telehealth include the CY19 Physician Fee Schedule, which allows for two new services—brief virtual check-ins with patients, and remote evaluation of recorded video and images.

      Who should act?
      CMS
  • 2
    Quality, Standards, and Research

    • IMPLEMENT legislative direction from the 2019 Labor and Health and Human Services Appropriations bill to expand research funding in palliative care.

      Who should act?
      NIH
    • BOLSTER patient experience measures in current and future Medicare value-based purchasing programs.

      Who should act?
      CMS
    • IMPLEMENT Medicare Access and CHIP Reauthorization Act (MACRA)–funded measures for specialty palliative care within the relevant clinician payment programs and explore adoption for other Medicare payment programs.

      In 2018, CMS awarded the American Academy of Hospice and Palliative Medicine (AAHPM)—with support from the National Coalition for Hospice and Palliative Care (NCHPC) and RAND Corporation—$5.5 million to develop at least two new quality measures specific to communication skills and symptom management skills.

      Who should act?
      CMS
    • ENSURE that professionals with palliative care expertise are included on relevant Center for Scientific Review (CSR) study sections within the NIH, and that appropriate ad hoc reviewers are involved in relevant reviews when standing study section expertise is lacking.

      Who should act?
      NIH
    • ADD quality incentives for selected entities (e.g., hospitals, skilled nursing facilities, home health agencies, and dialysis centers) that reward both clinician training programs and access to palliative care teams.

      Experience from the private sector can inform public efforts to incentivize high-quality palliative care. For instance, one national payer incorporated palliative care as a measure in its hospital quality incentive program; hospitals earn credit by achieving Advanced Certification for Palliative Care, or by meeting four core standards that include access to a specialty team along with an all-staff training program.

      Who should act?
      CMS
    • ENSURE that any policies designed to address the opioid epidemic do not restrict necessary access to these medications for people with a serious illness and those receiving palliative care.

      Who should act?
      HHS DEA
  • 3
    Public and Clinician Awareness

    • UNDERTAKE, support, and share communication and behavioral research aimed at assessing public perceptions and actions concerning care for people living with a serious illness, developing and testing effective messages and tailoring them to appropriate audience segments, and measuring progress and results.

      Who should act?
      AHRQ
  • State Policy

  • 1
    Workforce

    • ESTABLISH or expand loan forgiveness programs for clinicians who work as palliative care specialists.

      Federal and state governments can support growth in the palliative care workforce by helping cover the costs of training. For instance, Maryland maintains the Maryland Loan Assistance Repayment Program (MLARP). This program provides financial support that can be applied toward higher-education loans to certain physicians, physician assistants, and medical residents who work in eligible care sites.

      Who should act?
      State Legislatures State Health Departments
  • 2
    Payment

    • PAY for services beneficial to people with a serious illness by using existing codes, such as advance care planning, interdisciplinary team consults, and respite for family caregivers.

      States can support palliative care through traditional Medicaid by adding specific billing codes to their Medicaid benefits. For instance, both Delaware and Virginia added codes that pay for advance care planning services, interdisciplinary care team consults, and respite services.

      Who should act?
      State Legislatures State Medicaid Directors
    • INCLUDE home-based palliative care as a benefit under Medicaid Managed Care (MMC) and/or Managed Long-Term Services and Supports (MLTSS).

      Who should act?
      State Legislatures
    • CREATE opportunities to support pediatric palliative care, including embedding within existing programs and structures, such as Medicaid Health Homes or Early and Periodic Screening, Diagnostic, and Treatment (EPSDT).

      Who should act?
      State Legislatures
    • REVISE state exchange requirements to allow palliative care to be included as a benefit in any on-exchange plan.

      Who should act?
      State Regulatory Bodies
    • INCLUDE functional and cognitive status as a distinct element in premium risk adjustments in Medicaid Managed Care (MMC).

      Who should act?
      State Medicaid Directors
    • INCENTIVIZE provision of palliative care services to beneficiaries with serious illness under MMC and Managed Long-Term Services and Supports (MLTSS) through improved risk adjustment and quality incentives.

      MMC plans provide a significant opportunity to expand palliative care to states’ most vulnerable residents. In 2014, California passed SB 1004, which required that all Medi-Cal plans cover palliative care for members with a serious illness.

      Who should act?
      State Legislatures State Medicaid Directors
  • 3
    Quality, Standards, and Research

    • INSERT licensure requirements that hospitals and skilled nursing facilities with fifty or more beds provide access to specialty palliative care teams, as well as staff training on palliative care, communication, and symptom management.

      Maryland, informed by findings from a legislatively mandated pilot study on hospital palliative care, updated its regulations to require that hospitals with fifty or more beds establish an active, hospital-wide palliative care program that provides consultation services to patients living with a serious illness.

      Who should act?
      State Legislatures State Regulatory Bodies
    • INSERT a definition of and minimum standards for palliative care in the state code and relevant regulations, outside of hospice regulations.

      Formalizing a clear definition and standards for palliative care can ensure quality and consistency. Colorado has a detailed definition in its health facility licensure, which provides clarity on the settings in which palliative care can be offered and establishes a foundation for palliative care activity in the state and a future framework for accountability.

      Who should act?
      State Legislatures State Regulatory Bodies
    • ESTABLISH separate licensure for home-based palliative care and modify existing licensure for hospices and home health agencies based on existing practice standards.

      To clarify that licensed hospices can provide non-hospice palliative care services to people with a serious illness, California passed SB 294. The state will monitor and evaluate the effects of hospice providers offering palliative care services and review findings by 2021.

      Who should act?
      State Legislatures State Regulatory Bodies
    • REQUIRE providers, accountable care organizations, and managed care plans to report on relevant metrics or include palliative care in performance improvement projects to relevant oversight bodies.

      Texas included palliative care as one of the projects in its Delivery System Reform Incentive Payment (DSRIP) program. By the program’s end, twenty projects were reporting on one or more outcomes related to palliative care, including pain management and treatment preferences, with most reporting improvement over their baseline.

      Who should act?
      State Legislatures State Regulatory Bodies
    • ENSURE that any policies designed to address the opioid epidemic do not restrict necessary access to these medications for people with a serious illness and those receiving palliative care.

      While a majority of states are passing new laws and regulations to reduce the harm caused by the opioid epidemic, several states have simultaneously recognized the need to balance policy proposals and preserve access to necessary medications for people living with a serious illness. Maine, Vermont, and Indiana are examples of states that have included such exemptions.

      Who should act?
      State Legislatures State Regulatory Bodies
  • 4
    Clinician Skill Building

    • CREATE a grant program to fund targeted clinical training in the care of people with a serious illness. This can include the implementation of state cancer control plans.

      Nebraska established a separate 501(c)(3) to implement its cancer control plan, which includes palliative care in the survivorship section. It has used Comprehensive Cancer Control Program funding to provide palliative care training to targeted cancer programs and clinicians and has leveraged national surveys to capture palliative care availability in the state.

      Who should act?
      State Legislatures
    • REVISE state health professional licensure and continuing education requirements to include a minimum number of hours of instruction in both communication skills and symptom management skills.

      Georgia requires that physicians working in pain management clinics demonstrate coursework in palliative care. Other states with pain management or palliative care continuing education requirements include New Jersey, Oregon, and Rhode Island.

      Who should act?
      State Regulatory Bodies
  • 5
    Public and Clinician Awareness

    • ESTABLISH, in states that have not already done so, a multidisciplinary palliative care advisory board and task force.

      Palliative Care Advisory Councils or similar bodies have been established in twenty-eight states, including Kansas, Ohio, Oklahoma, South Carolina, and Texas.

      Who should act?
      State Legislatures
    • INCLUDE access to patient-centered services such as palliative care in state patients’ bills of rights.

      A patient’s bill of rights can be a consequential tool for empowering patients to demand high-quality care. Recognizing this, Vermont inserted a section on palliative care and pain management in its Bill of Rights for Hospital Patients in 2009.

      Who should act?
      State Legislatures State Regulatory Bodies
    • INCREASE the role of state public health agencies in promoting palliative care, developing referral resources and educational materials, and possibly delivering these services directly.

      Who should act?
      State Health Departments
  • Purchasers, Health Plans, and Accountable Care Organizations (ACOs)

  • 1
    Workforce

    • IDENTIFY clinicians in the existing network who are certified in palliative care to understand network capacity, and to classify them as high-value providers. Because palliative care is a subspecialty, additional research through professional societies is needed to identify these clinicians.

      Who should act?
      Health Plans ACOs
  • 2
    Payment

    • REDUCE or eliminate cost sharing for all encounters with members of a specialty palliative care team, as well as for all advance care planning conversations.

      One pioneering health plan has been covering unlimited advance care planning conversations during any provider appointment.

      Who should act?
      Purchasers Health Plans
    • COVER interdisciplinary team care in home and office settings, with 24/7 clinical response to crises, for eligible individuals. Consider changing the hospice policy to allow concurrent disease treatment while enrolled in hospice.

      The Bipartisan Budget Act of 2018 enables Medicare Advantage (MA) plans to offer supplemental benefits to subsets of their members, based on member characteristics such as diagnosis. Centers for Medicare and Medicaid Services (CMS) guidance specifically highlighted home-based palliative care services as an example of the type of supplemental benefit that can be offered.

      Who should act?
      Purchasers Health Plans
    • BUILD and operate programs of in-home interdisciplinary team care, with 24/7 clinical response to crises.

      The impact on avoidable utilization by a New York–based ACO that provides home-based palliative care was recently published in the Journal of Palliative Medicine.

      Who should act?
      ACOs
  • 3
    Quality, Standards, and Research

    • DEVELOP and implement standing processes to screen for unmet palliative care needs by leveraging data analytics to proactively identify people living with a serious illness, functional impairment, and/or memory loss.

      Who should act?
      Health Plans ACOs
    • REQUIRE or incentivize network hospitals, home health agencies, and skilled nursing facilities to demonstrate the availability of specialty palliative care teams who meet national guidelines. Consider requiring or incentivizing advanced certification in palliative care from an available accrediting body.

      One national payer incorporated palliative care as a measure in its hospital quality incentive program; hospitals earn credit by achieving Advanced Certification for Palliative Care, or by meeting four core standards that include access to a specialty team, along with an all-staff training program.

      Who should act?
      Health Plans ACOs
    • REQUIRE plans and ACOs to demonstrate sufficient specialty palliative care capacity in their provider network facilities and services.

      Tools and templates to help purchasers evaluate the abilities of their health plans and ACOs to adequately care for people with serious illness are available in Catalyst for Payment Reform’s Purchaser Toolkit for Serious Illness Care Strategies.

      Who should act?
      Purchasers
  • 4
    Clinician Skill Building

    • ENSURE that case managers working with people with a serious illness or complex needs are trained in key areas such as communication skills and conducting comprehensive family needs assessments.

      One national payer offers specially trained complex care management to members with serious illness. Nurses and social workers support members and their family caregivers, providing needs assessment, education, shared decision making, and goals-of-care discussions, as well as psychosocial care, resulting in reductions in inpatient days and emergency department visits, as published in 2009 in the Journal of Palliative Medicine.

      Who should act?
      Purchasers Health Plans ACOs
    • PROVIDE financial incentives for selected network clinicians to acquire communication and symptom management skills. Consider targeting oncology, cardiology, neurology, nephrology, and pulmonology departments.

      Who should act?
      Health Plans ACOs
    • EDUCATE all network providers about palliative care, including instruction on when to refer to a palliative care specialty team for consultation.

      One California payer helps its network serve seriously ill patients by offering training, tools, and resources on palliative care.

      Who should act?
      Health Plans ACOs
  • 5
    Public and Clinician Awareness

    • PROMOTE information on the benefits of palliative care to all populations.

      Who should act?
      Purchasers Health Plans ACOs
    • ESTABLISH, in areas where these do not yet exist, a multi-stakeholder coalition to continuously identify and advance opportunities that improve quality of life for people living with a serious illness, and their families.

      The Massachusetts Coalition for Serious Illness Care gathers plans, providers, patient advocates, professional associations, and others to strategize on the implementation of statewide campaigns that improve advance care planning, clinician skills, and more.

      Who should act?
      Purchasers Health Plans
  • Organization Types
  • ACO
    Accountable Care Organization
  • AHRQ
    Agency for Healthcare Research and Quality
  • CMMI
    Center for Medicare & Medicaid Innovation
  • CMS
    Centers for Medicare & Medicaid Services
  • Congress
  • DEA
    U.S. Drug Enforcement Administration
  • HHS
    U.S. Department of Health and Human Services
  • NIH
    National Institutes of Health
  • State Health Departments
  • State Legislatures
  • State Medicaid Directors
  • State Regulatory Bodies

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Contact Us

Inquiries about A State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals should be directed to:

Inquiries
Rachael Heitner, MPH
Associate Director, Research and Insights
Center to Advance Palliative Care
[email protected]