Policy Advocacy: Challenges and Solutions

Within our current health “system,” there are numerous barriers– clinical, social, and cultural — that help reinforce the uncoordinated and unsupportive care currently delivered to individuals with advanced illness.  These barriers include:

  • Payment and delivery systems barriers
    • Conflicting goals and uncoordinated services frequently characterize the care experience.
    • Delivery of care and reimbursement mechanisms are confined to separate, uncoordinated, and loosely affiliated silos whether in hospitals (that provide high-tech, curative treatment), in physician offices and clinics (that address acute complaints), or long-term care facilities or home health care agencies (that provide rehabilitation and/or skilled nursing) among others.  This creates a maze through which individuals with advanced illness must navigate with little support and with many of their diverse needs, including spiritual and social, going unmet.
    • Treatment coverage is often unreasonable for the circumstances and does not promote either informed choice or good quality.
    • Coverage often excludes common-sense long-term services and supports that already exist in the community and that could assist patients with living healthier, happier lives.
    • There is no accepted quality standard whereby individuals with advanced illness are entitled to discussion of options, counseling, and expert support to promote informed choices.
  • Lack of public dialogue – Many people are unaware of care options and do not initiate communication with health care professionals regarding plans of care and prognosis.  This problem compounds itself with a low awareness of many of the common problems that individuals, families and caregivers face during advanced illness and the subsequent lack of personal care planning to prepare for those situations.  There is also unawareness of many social services and supports that already exist in the community.
  • Lack of health system standards of care for advanced illness and coordination – Health care delivery for Americans with advanced illness is fragmented, with little coordination, support, or regard for personal wishes.
    • Care options are determined more by various payment mechanisms and benefits rather than by the personal goals of individuals, families, and caregivers.
    • There is no accepted standard of care for advanced illness that provides for early identification and initiation of discussions and support that might be typical of other conditions.
    • Discussion of options is not initiated by physicians until very late in the course of an illness or not at all.
    • The current fee-for-service payment method does not encourage efficient use of services or proper care coordination and lacks concepts of shared risk and shared accountability, encouraging reimbursement for quantity over quality.
  • Workforce inefficiencies – The existing workforce is insufficient to properly care for the growing number of Americans with advanced illness for several reasons including:
    • Insufficient numbers – looming shortages of and resources to engage nurses, primary care physicians, spiritual care providers, direct care workers, and social workers among other service providers threaten to leave many individuals with advanced illness without access to basic health care services.  This will place increased burden on family caregivers, who currently provide the vast majority of long-term care.  In the absence of appropriate and accessible health care professionals, caregivers are increasingly providing complex care with inadequate training.
    • Regulatory and administrative barriers – out-of-date regulations prevent providers from optimizing efficiencies and enabling interdisciplinary teams from providing appropriately supportive care to individuals and families living with advanced illness.  Administrative burdens are also compounded as state and federal regulations often do not align, which prevents providers, especially those who operate across state lines, from leveraging workforce resources and other technologies (such as telemedicine) that can build efficiencies in workforce delivery.  For example, providers are experiencing frustrations in having to hire and contract separately for home health and hospice workers separately, especially for those who fall in the cracks between home health, hospice, and long-term care benefits, when the same worker could best serve seriously ill patients.
    • Advanced illness focused training and protocols – there is little communication among health care providers and little incentive to coordinate services with other providers.  In addition, many care professionals need to be trained (or retrained) in the provision of certain caregiving and basic supportive services that can be helpful with individuals with advanced illness to avoid adverse health outcomes (for example, medication management, care planning and transitions, etc…) and to accommodate a rapidly aging population.
  • Standards of care – There are no well-recognized standards of care within the professional community for advanced illness. The elements of an appropriate standard of care should include prompt identification of individuals with advanced illness, counseling and discussion of choices at an early time, respect for individual choices, and support, pain relief and counseling appropriate to the circumstances.  Accreditation, regulation and payment mechanisms should support such standards according to best industry practices.

What are the interventions to get over these barriers?

C-TAC’s ultimate policy objective requires agreed upon goals and standards for advanced illness care, and an incentive structure and regulatory framework that supports those goals and standards so that all Americans with advanced illness should receive comprehensive, high-quality, coordinated, person-and family-centered care across all care settings, aimed at the highest quality of life possible.  C-TAC intends to pursue the implementation of integrated and coordinated of health and long-term services and supports interventions by working with the membership of the Coalition and with other organizations who share similar values and vision for health care in America. This new standard of care would be the result of the following interventions:

  • Increase Public Awareness of the Impact of Advanced Illness.
    • Launch a national education campaign – Design and engage in a sustained national education campaign, including the establishment of a national clearinghouse of resources for personal care planning and other health care and social services resources and for educating people on the need for reform in advanced illness care.  This campaign will include grasstops and grassroots strategies as well as a strategically designed mixture of different media outreach approaches.
  • Ensure the Highest Quality in Advanced Illness Care.
    • Develop comprehensive quality measures – Require the Secretary of Health and Human Services (HHS), in coordination with key private sector entities (e.g. National Quality Forum) that have already made progress on this front, to develop comprehensive quality measures for the advanced illness population in Medicare and Medicaid.  In some instances, existing quality measures and standards, such as the palliative care standards put forth by the National Quality Forum, may be used or modified to achieve this goal.
    • Designate national leadership for advanced illness – Encourage the Secretary of HHS to work with private sector stakeholders to create a public-private partnership tasked with coordinating, monitoring, and crafting policy specific to this population.
    • Coordinate research efforts – Convene stakeholders in advanced illness care and coordinate current and future research on care delivery practices and clinical standards for advanced illness care delivery.
  • Bolster Professional Education for Advanced Illness.
    • Strengthen current workforce – Develop and promote training protocols for medical and other  education curricula for the variety of health professionals caring for individuals with advanced illness with federal, state, and private-sector stakeholders (including updates to continuing education certifications) to ensure a stable, competent, vibrant and compassionate workforce encouraging interdisciplinary collaboration with patients, their families, and their caregivers.
    • Expand workforce capacity – Work with federal, state, and private-sector stakeholders to embed incentives to attract more professionals to the health care workforce with expanded roles and responsibilities unique to advanced illness care delivery.
    • Reform regulatory and administrative oversight – Advocate for a federal and state regulatory regime that leverages the skills and availability of the broad spectrum of health care workers and encourages efficiencies within the health care workforce.
  • Ensuring Advanced Illness Care Services. C-TAC will promote evidence-based policies aimed at modifying federal payment mechanisms in order to ensure coverage for advanced illness care coordination services, including the following:
    • Establish coverage of advanced illness care coordination services under traditional Medicare reimbursement.
    • Require integration of a variety of health and long-term services and supports interventions that Medicare and Medicaid currently cover in fragmented, unconnected ways.  This outcome could be achieved either under an entirely new payment and care delivery model, such as those being tested at Centers for Medicare and Medicaid Services (CMS), or by linking together current benefits and payment structures through a series of incentive payments, standards and regulatory initiatives.
    • Promote the utilization of advanced illness care coordination services in new, capitated payment models that spread and share risk among providers and payers with strong quality metrics and requirements.
    • Embed incentives to coordinate care and promote supportive, seamless transitions across the care continuum, especially among various post-acute care settings including home health, long-term care, home and community-based services, and hospice with appropriate mechanisms in place (such as quality metrics) to ensure focus on quality outcomes.
    • Adopt incentives and regulations for providers to engage individuals so that personal wishes are informed, documented, and then followed in a simple, straight-forward manner.
    • Promote effective regulations related to public health care programs such as Medicare and Medicaid to ensure that all individuals with advanced illness receive the same high-quality, person- and family-centered, comprehensive and coordinated care when and where they need it.
    • Establish a transitional reimbursement phase for currently critical and unreimbursed services that are necessary as part of a package of comprehensive, supportive advanced illness care coordination services; for example, care managers embedded in certain care settings with skills to identify and enroll individuals with advanced illness, telephonic and other remote case management, medication reconciliation services and others to ensure individuals receive the care that they want in the care setting of their choice until clinical integration has been established and services become part of the status quo of health care delivery.
    • Develop and implement incentives and payment to providers – and other stakeholders – to adopt and rapidly integrate evidence-based, consumer-friendly telehealth and health IT to facilitate the sharing of information and allow the workforce to care for individuals more efficiently and effectively while keeping them safe and comfortable in the setting of their choice.

Read more about C-TAC’s Policy Framework.  For more information about C-TAC’s Policy Advocacy initiative and Workgroup, please contact Kevin Kappel at KMKappel@advancedcarecoalition.org.

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