America’s Readiness to Meet the Needs of People with Serious Illness

2024 SERIOUS ILLNESS SCORECARD: 

A STATE-BY-STATE LOOK AT PALLIATIVE CARE CAPACITY

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Summary

At least 13 million Americans are living with a serious illness, many of whom suffer from attendant pain, symptoms, stresses, complex decisions, avoidable crises, and caregiver distress. Palliative care is an evidence-based solution that improves quality of life for these patients and their caregivers, and yet significant disparities exist.

Palliative care is specialized health care for people living with a serious illness. It is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family or caregiver. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness.

America’s Serious Illness Scorecard reviews each state’s capacity to deliver high-quality care to people facing serious illness. The Scorecard evaluates five domains:

  • Availability of specialty-trained palliative care professionals
  • Payment for specialty palliative care services
  • Structures to advance palliative care awareness and access
  • Basic palliative care professional education for all clinicians
  • Structures to meet functional and caregiver support needs

The Scorecard uses publicly available information across these domains to develop a composite rating, from 0 to 5 stars. In the 2024 Serious Illness Scorecard, no state has yet achieved five stars, with two states earning 4.5 stars, six states earning 4.0 stars, and 13 states earning 2.0 or fewer stars. These scores reveal that, while every state has some palliative care capacity, all states have room for improvement.

Champions interested in advancing palliative care in their state can learn more on CAPC’s blog.

Key Findings

High quality care for people living with serious illness depends on sufficient access to palliative care specialists as well as all clinicians having basic skills in serious illness communication, pain and symptom management, caregiver support—and an awareness of inequities.

  • While palliative care has become the standard of care in large hospitals, gaps in access remain in for-profit and rural hospitals.

    83.6% of U.S. hospitals with 50+ beds report having specialty palliative care services, and this prevalence climbs to 96.2% for hospitals with 300+ beds. However, the proportion of for-profit hospitals and rural hospitals with palliative care lags behind significantly, at 49.0% and 34.5% respectively.

  • The number of specialty-trained palliative care clinicians lags behind that of most other specialists.

    There are 19,920 clinicians (across all disciplines) in the U.S. who hold specialty certification in hospice and palliative care. For prescribers (physicians, advanced practice nurses, and physician associates), this translates to 2.86 prescribers per 100,000 population nationwide, far below most other medical specialties. This is not nearly enough to meet estimated demand. Policymakers and provider organizations are innovating to meet demand.

  • New payment policies and strategies are advancing palliative care capacity and access.

    Already, 13 states have legislation requiring payment for palliative care services. This includes specific Medicaid benefits for interdisciplinary community-based palliative care, mandates to Medicaid managed care organizations, and requirements for commercial insurers. In some other states, the largest commercial insurers offer palliative care programs, making a measurable difference in outcomes.

  • Increasing numbers of clinicians are gaining basic skills in key drivers of palliative care outcomes: communication and symptom management.

    22 states include continuing education on pain management, palliative care, geriatrics, dementia/Alzheimer’s, and/or end-of-life care in their physician and/or nurse licensure requirements. In other states, medical and nursing boards may have incorporated palliative care content into their opioid training standards. Further, through CAPC’s clinical education, more than 136,000 doctors, nurses, social workers, case managers, and others have completed courses in communication skills, pain management and safe opioid prescribing, non-pain symptom management, best practice dementia care, and other essential palliative care skills.

  • Stark health inequities related to race and income exist for people living with serious illness.

    Not only are Black Americans at the highest risk of mortality for illnesses such as cancer and heart disease, they are also less likely to receive appropriate pain and symptom management. People dually eligible for both Medicare and Medicaid face more than double the rate of mortality than Medicare-only beneficiaries, while at least 10% are living with a serious illness.

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State Ratings

Hover over a state to view its rating.

Click on a state to view its report card.

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  • Massachusetts
    4.5
    4.5
    90.7
    0
  • Oregon
    4.5
    4.5
    88.9
    1
  • California
    4.0
    4.0
    77.3
    2
  • Connecticut
    4.0
    4.0
    95.8
    3
  • Illinois
    4.0
    4.0
    81.6
    4
  • Maryland
    4.0
    4.0
    95.0
    5
  • New Jersey
    4.0
    4.0
    91.8
    6
  • Ohio
    4.0
    4.0
    84.8
    7
  • Alaska
    3.5
    3.5
    42.9
    8
  • Colorado
    3.5
    3.5
    80.6
    9
  • Delaware
    3.5
    3.5
    100.0
    10
  • Kentucky
    3.5
    3.5
    57.1
    11
  • Maine
    3.5
    3.5
    76.9
    12
  • Minnesota
    3.5
    3.5
    76.3
    13
  • New Mexico
    3.5
    3.5
    38.5
    14
  • New York
    3.5
    3.5
    80.8
    15
  • Pennsylvania
    3.5
    3.5
    76.6
    16
  • Vermont
    3.5
    3.5
    100.0
    17
  • Virginia
    3.5
    3.5
    86.5
    18
  • Florida
    3.0
    3.0
    64.5
    19
  • Hawaii
    3.0
    3.0
    66.7
    20
  • Michigan
    3.0
    3.0
    75.4
    21
  • Montana
    3.0
    3.0
    57.1
    22
  • Nebraska
    3.0
    3.0
    77.8
    23
  • New Hampshire
    3.0
    3.0
    100.0
    24
  • Rhode Island
    3.0
    3.0
    100.0
    25
  • Washington
    3.0
    3.0
    84.0
    26
  • Alabama
    2.5
    2.5
    39.3
    27
  • Arizona
    2.5
    2.5
    79.4
    28
  • Indiana
    2.5
    2.5
    76.7
    29
  • Iowa
    2.5
    2.5
    70.4
    30
  • Kansas
    2.5
    2.5
    56.7
    31
  • Nevada
    2.5
    2.5
    84.2
    32
  • North Carolina
    2.5
    2.5
    67.6
    33
  • North Dakota
    2.5
    2.5
    85.7
    34
  • Texas
    2.5
    2.5
    52.2
    35
  • West Virginia
    2.5
    2.5
    56.5
    36
  • Wisconsin
    2.5
    2.5
    92.7
    37
  • District of Columbia
    2.0
    2.0
    85.7
    38
  • Georgia
    2.0
    2.0
    65.0
    39
  • Louisiana
    2.0
    2.0
    61.4
    40
  • Mississippi
    2.0
    2.0
    33.3
    41
  • South Carolina
    2.0
    2.0
    61.4
    42
  • South Dakota
    2.0
    2.0
    88.9
    43
  • Tennessee
    2.0
    2.0
    61.7
    44
  • Utah
    2.0
    2.0
    92.9
    45
  • Idaho
    1.5
    1.5
    66.7
    46
  • Missouri
    1.5
    1.5
    71.2
    47
  • Oklahoma
    1.5
    1.5
    37.5
    48
  • Arkansas
    1.0
    1.0
    41.2
    49
  • Wyoming
    1.0
    1.0
    37.5
    50

Recommendations

Action at the federal and state levels is needed to expand palliative care access to all people living with  serious illness, and their families and caregivers

At the federal level, the Palliative Care and Hospice Education and Training Act (PCHETA, S. 2243 in the 118th Congress) remains an essential vehicle to grow the specialty palliative care workforce and increase the capacity of all non-palliative care clinicians in communication and pain and symptom management; expand palliative care research; and increase palliative care awareness among the general public. Visit the Patient Quality of Life Coalition’s (PQLC) Advocacy page for more information.

At the state level, CAPC encourages state policymakers and champions to explore opportunities for action in the following domains:

WORKFORCE

Expand the specialty palliative care workforce pipeline to meet the needs of patients living with a serious illness. Recommendations include (but are not limited to):

  • Establish or expand loan forgiveness programs for certified clinicians who work as palliative care specialists in your state.
  • Provide grants and other supports to enable palliative care teams to provide remote consultations to rural hospitals and federally qualified health centers, addressing key disparities in access to palliative care.

Payment

Improve financing and financial incentives to ensure equitable and reliable access to palliative care. Recommendations include (but are not limited to):

  • Incorporate essential components of palliative care into relevant Medicaid programs (such as Health Homes, Managed Long-term Care Plans, or Home and Community Based Services). This can include revising enrollee assessments to include functional impairment, symptom distress, and caregiver burden, or inserting communication training requirements for care managers and other clinicians.
  • Create a process to involve multiple interested parties, in conjunction with the state department of health, to inform the development of Medicaid reimbursement and quality control measures for interdisciplinary, community-based palliative care.

Quality / Standards

Expand accountability for access to high-quality care delivery. Recommendations include (but are not limited to):

  • Use state policies and regulations to define palliative care services and standards.
  • Add a palliative care module to the state Behavioral Risk Factor Surveillance System (BRFSS) questionnaire to better understand palliative care delivery from the consumer perspective.

Clinical Skill-Building

Expand all clinician training in communication; pain and symptom management; caregiver assessment and support; and care over time and settings. Recommendations include (but are not limited to):

  • Revise state health professional licensure and continuing education requirements to include a minimum number of hours of instruction in both pain/symptom management skills and serious illness communication skills, with particular attention to best practices in equitable care. There are now five states requiring implicit bias training for their physicians, and others may follow.

Public and Clinician Awareness

Improve knowledge about palliative care and its benefits. Recommendations include (but are not limited to):

  • Create a state-level awareness campaign to educate the public and providers on what palliative care is and who can benefit.

 

Palliative care leaders in a given state may have more targeted recommendations to improve access and quality, and should be consulted before embarking on any new initiative. Visit CAPC’s State Policy Toolkit and the National Academy for State Health Policy (NASHP) Palliative Care Resource Center for more information.

Figures & Tables

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Contact Us

Inquiries about the 2024 Serious Illness Scorecard should be directed to [email protected]

Suggested Citation: America’s Readiness to Meet the Needs of People with Serious Illness: 2024 Serious Illness Scorecard. Center to Advance Palliative Care. August 2024.