Medical Aid-in-Dying Utilization Report

Letter from the CEO:

Nearly 30 years ago, in November 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 to peacefully end unbearable suffering. The law survived legal challenges as well as 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, either through statute or court decision. This list includes ten states: Oregon (1994, ballot initiative), Washington (2008, ballot initiative), Montana (2009, state Supreme Court decision), 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), 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 now have 25 years of data since Oregon implemented its law in 1997 and years of experience from other authorized jurisdictions, including annual statistical reports from nine jurisdictions. (No Montana data is included in this report since Montana’s Supreme Court ruled that no state statute prohibits medical aid in dying, and the court decision did not mandate data collection.) In fact, when California lawmakers reviewed data from the first five years following the End of Life Option Act’s implementation, they concluded that the law protects vulnerable populations as intended, but it had too many unnecessary regulatory roadblocks. As a result, California reauthorized and improved its law in 2021. It reduced the 15-day waiting period between the two oral requests for medication to 48 hours so that more eligible dying people would not needlessly suffer, unable to access the law. Based on data from all authorized jurisdictions, New Mexico passed a medical aid-in-dying law in 2021 requiring only one written request for medical aid in dying (no oral requests) and allowing a prescribing clinician to waive the 48-hour waiting period between receiving the written request and filling the medication prescription if the terminally ill person is likely to die during the waiting period. It also followed the standard way medicine is practiced in its jurisdictions and included advanced practice registered nurses (APRNs) and physician assistants as prescribing providers. Finally, Vermont lawmakers updated their law in 2022 to improve access, including eliminating an additional 48-hour waiting period at the end of the request process.

This report is a compilation of annual reports from all of the jurisdictions where medical aid in dying is authorized that collect data. The data clearly demonstrate that concerns of abuse, coercion or misuse are unfounded, and the medical practice provides relief from suffering. Across all the authorized jurisdictions that report data, 6,378 individuals to date have chosen to use medical aid in dying to peacefully end intolerable suffering.

We know that while few people use medical aid in dying, many gain peace of mind and comfort simply knowing the option exists. Further, medical aid in dying creates a shift within our end-of-life care system from a paternalistic model to one that is resoundingly person-driven, which contributes to improvements in hospice, palliative care, and pain and symptom management.

Terminally ill people in jurisdictions that have not 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. The time has come for compassionate lawmakers in their respective states to listen to the wishes of constituents and authorize medical aid in dying this year.

Sincerely,

Kim Callinan

President and CEO

Compassion & Choices

Context and Methods

• 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.

Medical Aid-in-Dying Jurisdiction Usage Reports

Based on reported data, the following is known:

• Cumulatively, for the past 20+ years across all jurisdictions, 6,378 people have used a medical aid in dying prescription to end their suffering.
• Just over a third of people (37%) who go through the process and obtain the prescription never take it. However, they derive peace of mind simply from knowing they have the option if their suffering becomes too great. Less than 1% of the people who die in each jurisdiction use the law each year.¹⁰
• The majority of terminally ill people who use medical aid in dying — more than 87% — received hospice services at the time of their deaths, according to annual reports for which hospice 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 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.
• 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.
• Just over 90% 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.¹¹
• Differences in data collection and reporting among jurisdictions do not allow for thorough comparisons of medical aid-in-dying use across the United States.