Medical Aid-in-Dying Utilization Report

Collage of people who have utilized medical aid in dying

Letter from the CEO:

Thirty years ago this November, in 1994, Oregon passed the nation’s first law giving mentally capable, terminally ill adults the end-of-life care option of medical aid in dying. The law survived legal challenges and a repeal measure referred to the ballot by the Oregon Legislature, with 60% of Oregon voters choosing to retain the law. The law was officially implemented in 1997.

Today, more than one in five people — 22% — live in a jurisdiction where medical aid in dying is authorized. This list includes 10 states: Oregon (1994, ballot initiative), Washington (2008, ballot initiative), Montana (2009, state Supreme Court decision; no Montana data is included in this report, as the court decision did not mandate data collection), Vermont (2013, legislation, amended in 2022), California (2015, legislation, amended in 2021), Colorado (2016, ballot initiative), Hawaii (2018, legislation), New Jersey (2019, legislation), Maine (2019, legislation) and New Mexico (2021, legislation), as well as the District of Columbia (2016, legislation).

We no longer have to hypothesize about what will happen if this medical practice is authorized. We have over 25 years of data since Oregon implemented its law and years of experience from other authorized jurisdictions, including annual statistical reports from nine jurisdictions.

This report is a compilation of annual reports from all of the authorized jurisdictions that collect data. We offer all available 2022 data, making this the most comprehensive utilization report ever published!

Across all the authorized jurisdictions that report data, 9,122 individuals to date have chosen to use medical aid in dying. While few people use the option, many gain peace of mind and comfort simply knowing it exists. Further, medical aid in dying creates a shift within our end-of-life care system to one that is resoundingly person-driven, leading to improvements in hospice, palliative care, and pain and symptom management.

Terminally ill people in jurisdictions that have not yet authorized medical aid in dying need this option now. We have reassuring data, strong public support, and evidence that medical aid in dying is politically viable and desirable. If you have any questions about this report, please contact National Director of Policy Bernadette Nunley at [email protected] for more information.

Sincerely,
Kim Callinan
President and CEO
Compassion & Choices

Context and Methods

Currently, nine authorized jurisdictions have issued reports regarding the use of medical-aid-in-dying laws: Oregon,1 Washington,2 Vermont,3 California,4 Colorado,5 Hawaiʻi6, the District of Columbia7, New Jersey8 and Maine9. In all jurisdictions where medical aid in dying was authorized by legislation or ballot measure, there are statistical reporting requirements for administrative agencies, such as state health departments. However, the reported data is not standardized, and the report formats can change from year to year. In addition, New Mexico has not issued an official report as of this writing, so that data is not included here10. Listed below are the data points most useful in demonstrating how medical aid in dying is being used and where there are opportunities to improve access.

  • People who received a prescription and people who died after ingestion provide us with two key pieces of information: how many people made it through the entire process to obtain a prescription for medical aid in dying and how many of those individuals decided to take the medication.
  • Race, gender and age categories show where disparities exist. Race and ethnicity are not reported universally across jurisdictions, nor are these categories always reflective of the different ways people identify. The inconsistency and limited options for reporting make accurately tracking data among different groups challenging.
  • Insurance information illustrates the impacts of cost and healthcare coverage on access to medical aid in dying. Due to the Assisted Suicide Funding Restriction Act (ASFRA), many individuals reliant on federally funded insurance programs cannot use their insurance to cover the costs associated with medical aid in dying.
  • Underlying Illness reports the most common illnesses and diagnoses for individuals who request medical aid in dying.

This report aggregates utilization information available in 2023 (2023 reports include data from calendar year 2022), along with 2023 data from Oregon. Although differences exist in how each jurisdiction collects and reports medical aid-in-dying data, we have put all reported data from each jurisdiction in aggregate form in order to provide a picture of medical aid in dying in the United States. Key findings are analyzed below.

Medical Aid-in-Dying Jurisdiction Usage Reports

Based on reported data, the following is known:

  • Cumulatively, for the past 20+ years across all jurisdictions, 9,122 eligible people have used a medical aid-in-dying prescription.
  • Less than 1% of the people who die in each jurisdiction use the law each year.11
  • Only 63% (or just under 2/3) of people with prescriptions ingest the medication and die. Up to 37% of people who go through the process and obtain the prescription may never take it. This group consists of people who die from their underlying illness, another cause of death or an unreported cause of death. In any case, they derive peace of mind simply from knowing they have the option if their suffering becomes too great.
  • The majority of terminally ill people who use medical aid in dying (88%) received hospice and/or palliative care services at the time of their deaths, according to annual reports for which hospice and palliative care data is available.
  • There is nearly equal use of medical aid in dying among men and women. There is no data on use of medical aid in dying by nonbinary or gender non-conforming people.
  • The rate at which Asian, Black, Hawaiian/Pacific Islander, Hispanic, Indigenous American/Alaskan Native, Latino/a/x (Hispanic) and multi-race people access and use prescriptions under medical aid-in-dying laws is consistently lower than with white populations.
  • The most recent reports indicate medical aid-in-dying access is improving among people of color. In 2022, California, New Jersey and Washington, D.C., all reported more people of color accessing medical aid in dying. In 2023, Oregon reported more people of color accessing medical aid in dying.
  • Terminal cancer accounts for the vast majority of qualifying diagnoses, with neurodegenerative diseases such as ALS or Huntington’s disease following as the second-leading diagnosis.
  • While cancer remains the most common qualifying diagnosis, some jurisdictions are seeing growing numbers of patients with neurological diseases seeking medical aid in dying.
  • Over 75% of people who use medical aid in dying are able to die at home. According to various studies, that is the preference of most Americans.12
  • Differences in data collection and reporting among jurisdictions do not allow for thorough comparisons of medical aid-in-dying use across the United States.
  • Increased access to medical aid in dying is observed in jurisdictions that have expanded their laws by removing residency requirements, shortening waiting periods, and allowing APRNs and other qualified non-physician healthcare providers to participate. While we can only begin to see it in this report, moving forward it will become easier to see the positive impact these changes have had.

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1Oregon Death with Dignity Act Annual Reports (1998-2022) Available from: https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/ar-index.aspx

2Washington Death with Dignity Data (2009-2022). Available from: https://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct/DeathwithDignityData

3Vermont Report Concerning Patient Choice at the End of Life. (2018-2022) Available from: ttps://www.healthvermont.gov/systems/end-of-life-decisions/patient-choice-and-control-end-life

4California End of Life Option Act Annual Report (2016-2022) Available from: https://www.cdph.ca.gov/Programs/CHSI/Pages/End-of-Life-Option-Act-.aspx

5Colorado End of Life Options Act Annual Report (2017-2022) Available from: https://www.colorado.gov/pacific/cdphe/medical-aid-dying

6Hawai‘i Our Care, Our Choice Act Annual Report (2019-2022) Available from: https://health.hawaii.gov/opppd/ococ/

7District of Columbia Death with Dignity Act Annual Report. (2017-2022) Available from: https://dchealth.dc.gov/publication/death-dignity-annual-reports

8New Jersey Medical Aid in Dying for the Terminally Ill Act Data Summary (2019-2022) Available from: https://nj.gov/health/advancedirective/maid/

9Maine Patient Directed Care at End Of Life Annual Report. (2019-2022) Available from: https://www.maine.gov/dhhs/data-reports/reports

10Elizabeth Whitefield End-of-Life Options Act. Available from: https://www.nmhealth.org/about/erd/bvrhs/vrp/maid/

11According to the Center for Disease Control, in 2020 in jurisdictions that authorized medical aid in dying, 606,525 people died in total. In 2020, authorized jurisdictions report 1,299 people died after being provided with a prescription for medical aid in dying – less than 0.002% of total deaths in 2019. Kochanek, K. D., Murphy, S. L., Xu, J., & Arias, E. (2023). (rep.). Deaths: Final Data for 2020. U.S. Department of Health and Human Services. Retrieved December 12, 2023, from https://www.cdc.gov/nchs//data/nvsr/nvsr72/nvsr72-10.pdf

12Kaiser Family Foundation, Views and Experiences with End-of-Life Medical Care in the U.S., April 27, 2017, available from: https://www.kff.org/report-section/views-and-experiences-with-end-of-life-medical-care-in-the-us-findings

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VICTORY: Colorado Gov. Jared Polis signed the improved End-of-Life Options Act.

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