Methodology and Sources

Serious Illness Scorecard

Figure 1 and Table 1. Rating Algorithm

The 2024 Serious Illness Scorecard considers multiple factors that can support best practice care for people living with serious illness, including access to specialty palliative care. In total, 10 variables are included in the rating algorithm, each weighted equally. The scores for all 10 variables were added together, for a maximum score of ten. These scores were then divided by two to change the scale to a maximum of 5. Each state’s resulting score was then rounded up to the nearest half point. See Table 1, State Rating Detailed Information to see how each state’s rating was calculated. Only 50 states and DC were included due to lack of data for the U.S. territories.

The ten variables used in the rating calculation are as follows:

Variable #1: Proportion of State’s Hospitals (>50 Beds) with Self-Reported Palliative Care Program or Unit

  • DESCRIPTION: The percentage of hospitals in each state, with 50 or more beds, that have self-reported a palliative care program.
  • SOURCE: 2022 AHA Annual Survey Database™
  • METHOD: Hospitals were counted as having palliative care if they answered yes to having either a palliative care program or a palliative care unit in the AHA survey (self-report). Hospitals were included if they responded to the AHA survey, had 50 or more beds, and were categorized as follows: non-governmental, general medical and surgical, children’s general medical and surgical, cancer, children’s cancer, heart, and obstetrics and gynecology hospitals. States’ prevalence of hospitals with palliative care were broken down into quartiles: those in the top quartile were given 1.0 point; those in the third quartile were given 0.75 points; those in the second quartile were given 0.5 points; those in the bottom quartile were given 0.25 points.

Variable #2: Count of State’s Certified Hospice and Palliative Care Professionals per 100,000 Population

  • DESCRIPTION: Total number of medical doctors, advanced practice nurses, registered nurses, licensed practical/vocational nurses, nursing assistants, and social workers that hold advanced certification in hospice and palliative care; divided by the state population in units of 100,000. Physician assistants, pharmacists, and chaplains do have advanced certification options; however, the data are not available at the state level, so were not included in this calculation.
  • SOURCE: Certification counts for medical doctors were taken from the American Board of Medical Specialties Board Certification Report 2022-2023. All levels of nursing and social work were taken from the Hospice and Palliative Credentialing Center’s Certification Verification Tool, accessed via the internet February 7, 2024. The state population was taken from the U.S. Census, 2022 Vintage data, accessed via the internet February 2, 2024.
  • METHOD: The certification counts listed above for each state were summed and then divided by that state’s population. That number was then multiplied by 100,000 to express it as a rate, which is easier to compare across states. The rates were listed from highest to lowest. Those in the top quartile were given 1.0 point; those in the third quartile were given 0.75 points; those in the second quartile were given 0.5 points; those in the bottom quartile were given 0.25 points.

Variable #3: Existence of State Legislation or Regulation Expanding Payment for Specialty Palliative Care (Adult or Pediatric)

  • DESCRIPTION: Legislation, appropriations, waiver/waiver application, directive, or other policy document that creates an additional or explicit payment opportunity for adult and/or pediatric specialty palliative care services; or establishes a workgroup or similar process to define what a new payment mechanism would look like.
  • SOURCE: LegiScan search for palliative care payment-related legislation, verified by state legislature websites; Centers for Medicare and Medicaid Services State Waivers List; State Department of Health websites; all accessed February 13-29, 2024.
  • METHOD: States with identified payment activity (Yes) received 1.0 point and others (No) received zero points.

Variable #4: Existence of Unique Services for Enrollees with Serious Illness at the State’s Largest Health Insurance Provider

  • DESCRIPTION: From a list of each state’s largest private payer, the presence of a palliative care, serious illness, end of life, or similar program to provide additional support for members living with serious illness.
  • SOURCE: Report compiled by Becker’s, accessed on March 15, 2024. From that list, search of each payer’s website for supportive programs.
  • METHOD: States with identified program for members with serious illness offered by their largest payer (Yes) received 1.0 point and others (No) received zero points.

Variable #5: Existence of Active State Palliative Care Advisory Council

  • DESCRIPTION: Presence of an active, legislatively-established Palliative Care Advisory Council (or similarly titled entity), operating in partnership with a state governmental agency, to provide education, make recommendations, and/or increase public awareness of palliative care. Councils that were not legislatively established or have sunsetted were excluded.
  • SOURCE: Internet search of each state’s official council website, verified by legislation search, conducted between February 13-29, 2024.
  • METHOD: States with an active council (Yes) received 1.0 point and others (No) received zero points.

Variable #6: Existence of State Palliative Care Coalition (Adult or Pediatric)

  • DESCRIPTION: Presence of an active, adult and/or pediatric, multi-party coalition, that includes palliative care, hospice, and/or serious illness in the title; or includes palliative care as an explicit part of its portfolio. Key activities among these coalitions include advocacy, public awareness, and/or professional education. Excludes state-level professional associations.
  • SOURCE: Internet search for coalitions that met specific criteria, conducted between February 13-29, 2024.
  • METHOD: States with an identified coalition (Yes) received 1.0 point and others (No) received zero points.

Variable #7: Existence of Relevant Medical and/or Nursing Continuing Education Requirements

Variable #8: Count of Clinicians Who Completed at Least One CAPC Course per 10,000 Clinicians in the State

  • DESCRIPTION: The number of people from each state who have taken at least one CAPC online continuing education course in basic palliative care skills, divided by the number of practicing clinicians (medical doctors, doctors of osteopathic medicine, advanced practice nurses, registered nurses, licensed practical/vocational nurses, nursing assistants, social workers, and physician associates) in that state, expressed as a rate per 10,000 state clinicians.
  • SOURCE: Internal CAPC data was used for the number of people who have completed at least one CAPC course, accessed February 15, 2024. Medical doctor counts were taken from Becker’s report on the number of licensed physicians per state. Doctor of Osteopathic Medicine counts were taken from the Osteopathic Medical Professional Report 2023. Counts for all levels of nursing except nursing assistants, social workers, and physician associates were taken from the U.S. Bureau of Labor Statistics Occupational Employment and Wage statistics data tables, May 2023.
  • METHOD: The number of people who have taken CAPC courses (since the inception of CAPC courses in 2015) was divided by the sum of the clinicians mentioned above. This number was then multiplied by 10,000. The rates were listed from highest to lowest. Those in the top quartile were given 1.0 point; those in the third quartile were given 0.75 points; those in the second quartile were given 0.5 points; those in the bottom quartile were given 0.25 points.

Variable #9: Existence of Medicaid Waiver for Extra Services for Seriously Ill Children

  • DESCRIPTION: An approved Medicaid waiver that covers additional benefits beyond home-based services for children aged 0-16 (or to 21) in the following categories: medically fragile or technology dependent; physical or other health disability; HIV/AIDS; or brain or spinal cord injury. Excluded states in which waivers are limited to home-based services only (TEFRA and Katie Beckett waivers).
  • SOURCE: Kids Waivers, accessed March 28, 2024. This website is managed by Susan Agrawal, PhD, a parent advocate, currently serving as Director of the Illinois Family-to-Family Information Center of Illinois.
  • METHOD: States with a waiver meeting these criteria (Yes) received 1.0 point and others (No) received zero points.

Variable #10: AARP Long-Term Services and Supports (LTSS) Scorecard Ranking

Figure 2. Hospital Palliative Care Prevalence by Bed Size and Tax Status

  • DESCRIPTION: The percentage of hospitals in each state, with 50 or more beds, that have a self-reported palliative care program.
  • SOURCE: 2022 AHA Annual Survey Database™
  • METHOD: Hospitals were counted as having palliative care if they answered yes to having either a palliative care program or a palliative care unit in the AHA survey (self-report). Hospitals were included if they had 50 or more beds and were categorized as follows: non-governmental, general medical and surgical, children’s general medical and surgical, cancer, children’s cancer, heart, and obstetrics and gynecology hospitals. Tax-status is a variable in the database.

Figure 3. Hospital Palliative Care Prevalence (50+ Beds) by U.S. Census Division

  • DESCRIPTION: The percentage of hospitals in each state, with 50 or more beds, that have self-reported a palliative care program.
  • SOURCE: 2022 AHA Annual Survey Database™
  • METHOD: Hospitals were counted as having palliative care if they answered yes to having either a palliative care program or a palliative care unit in the AHA survey (self-report). Hospitals were included if they had 50 or more beds and were categorized as follows: non-governmental, general medical and surgical, children’s general medical and surgical, cancer, children’s cancer, heart, and obstetrics and gynecology hospitals. U.S. census divisions were used to label the geographic regions. Each hospital’s tax status was taken from the 2022 AHA Annual Survey Database™ without further validation.

Figure 4. Selected Physician (MD) Specialties per 100,000 U.S. Population

  • DESCRIPTION: The ratio of board-certified MDs in each specialty for each 100,000 individuals in the United States
  • SOURCE: AAMC Physician Specialty Data Report, Table 1.1, accessed March 5, 2024
  • METHOD: The total number of Hospice and Palliative Care board-certified MDs used in Variable #2 above (sourced from the ABMS) were divided by the U.S. population and again divided by 100,000. The AAMC physicians per person were divided by 100,000.

Figure 5. States with Serious Illness-Relevant Continuing Education Requirements

All other information presented in the national Serious Illness Scorecard is a summation from information collected and reported in the individual state reports. See below for sources.

 

 

State Reports

The State Reports compile data that describe the current palliative care landscape in each state, as well as selected items that highlight the health care environmental context for people living with serious illness. Authors used the following sources while developing the report. The reference numbers correspond to each section of the report.

a CAPC gathered information on state structures between February 13-29, 2024, based on publicly reported data found on the internet, as well as from professional associations.

b Internal CAPC analysis based on data from the American Hospital Association Annual Survey Database 2022. Based on hospital self-report of palliative care program or unit; no validation was done on the responses.

c CAPC analysis from AHA Annual Survey Database 2022 (as above).

d CAPC analysis from AHA Annual Survey Database 2022 (as above).

e Palliative Care Ensures Value.

f Physician count from the American Board of Medical Specialties (ABMS) Board Certification Report 2022-23; Advanced Certified Hospice and Palliative Nurse and Certified Hospice and Palliative Nurse counts from the Hospice and Palliative Credentialing Center (HPCC) Certification Verification Tool, accessed February 7, 2024.

g CAPC analysis from the ABMS and HPCC certified professionals by state, together with state population numbers from the U.S. Census, Vintage 2022 data, accessed February 2, 2024.

h Physician count from the ABMS Board Certification Report 2022-23 (as above), specific to the count of American Board of Pediatrics sub-specialists in Hospice and Palliative Medicine.

i Data on fellowship programs from the American Association of Medical Colleges, accessed February 12, 2024.

j CAPC gathered information on state-level payment activity between February 13-29, 2024, based on state legislation, the Centers for Medicare and Medicaid Services Waiver List, and State Department of Health websites.

k Internal CAPC data on its organizational members and users, accessed February 7, 2024.

l Data from KFF State Health Facts, Health Insurance Coverage of the Total Population 2022, accessed February 13, 2024.

m Medicare Advantage penetration: CMS Statistics and Reports, Monthly Medicare Advantage Enrollment by State, January 2024; accessed February 13, 2024.

n Medicaid Managed Care “With/Without” based on KFF Total Medicaid MCOs, using 2023 CMS Enrollment Reports, based on 2021 data, accessed February 13, 2024.

o Data from KFF State Health Facts, Total Cancer Deaths by Race/Ethnicity 2021, accessed February 13, 2024.

p State ranking based on the Advanced Care Transformation Report 2023, a product of the Coalition to Transform Advanced Care (C-TAC), shared with CAPC staff January 10, 2024.

q State ranking based on the 2023 AARP report, Innovation and Opportunity: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers.

Disclaimers

The Serious Illness Scorecard (“Scorecard”) builds on the legacy of CAPC’s previous State-by-State Report Cards to provide comparative information on palliative care availability and supports by state. The Scorecard structure and methodology have been entirely revamped; therefore, scores should not be compared to previous Report Card grades, and no trend lines should be created.

As with previous Report Cards, palliative care elements in the Scorecard did not examine timeliness, reach, or quality of palliative care programs or clinicians.

National and state report elements were developed based on extensive information gathering conducted by CAPC staff, using publicly available data and CAPC membership information. CAPC staff did not independently validate these sources. While staff endeavored to be thorough, there may also be inadvertent omissions. For points of clarification or to provide the authors with additional information, please contact [email protected].

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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.