Medical aid in dying is authorized in 14 jurisdictions, and for decades Compassion & Choices has worked to ensure that authorization translates into real, informed access to patient-directed healthcare at the end of life. Through education, advocacy, and direct patient support, we help people understand their end-of-life healthcare options and navigate complex systems with clarity and confidence. We analyze new research to integrate findings into our advocacy and education efforts and to ensure that our work evolves to meet the needs of patients and their loved ones.
Two recently published studies examine gaps that can limit meaningful access to end-of-life healthcare in states where medical aid in dying is authorized. One looks at how the public understands — or misunderstands — whether medical aid in dying is authorized. The other examines how hospices communicate their participation policies to patients and families. Together, they reveal how information gaps, ambiguity, and silence can limit real access, even where authorization exists.
The first study explores how people get medical aid in dying wrong and why those errors matter.
Rather than treating all incorrect answers the same, the researchers distinguish between two very different experiences:
This distinction turns out to be critical. The study finds that these two groups are shaped by different factors.
Uncertainty is more closely associated with structural barriers, such as lower levels of education and financial insecurity. These are gaps often linked to limited access to health information and healthcare systems. That finding reinforces the importance of clear, accessible education and community outreach–work that Compassion & Choices prioritizes across the nation.
Misinformation, however, appears to be driven primarily by ideological factors, including beliefs about whether medical aid in dying is moral, whether it should be authorized, and how frequently someone practices religion. In these cases, incorrect beliefs are not simply about lack of information, they reflect motivated reasoning shaped by values and identity.
One particularly striking finding is how misinformation compounds itself. Respondents who believed medical aid in dying was not authorized anywhere in the U.S. were much more likely to also believe it was not authorized in their own state, even when they lived in a state where it is. This suggests that once misinformation takes hold, it can generalize across related policy questions.
For Compassion & Choices, this research underscores why education must be ongoing, community-oriented, and grounded in trust, from maintaining clear access guides, to training volunteers, and working with healthcare providers to ensure patients receive accurate, comprehensive information. Authorization alone does not ensure understanding; sustained engagement does.
The second study, published in the Journal of Palliative Medicine, shifts the focus from public knowledge to institutional practice, specifically, how hospices communicate their participation in medical aid in dying.
This question is especially important because 87% of people who access medical aid in dying are enrolled in hospice care. Yet the study finds that only 5.4% of hospices in states where medical aid in dying is authorized have a publicly available participation policy.
This gap is especially notable in states like California and New Mexico, where statutes require certain healthcare organizations to publicly report their medical aid in dying participation policies. The study found that most hospices in both states did not have publicly available online policies, with no policies identified among the New Mexico hospices reviewed and only 3.6% among those in California.
And availability is only part of the problem. When policies were published, they were often vague or incomplete. Nearly half did not clearly state whether hospice physicians were permitted to prescribe medical aid-in-dying medication, and many failed to explain what kinds of support patients could expect.
For patients and families facing serious illness, this lack of clarity can create delays, confusion, and distress — especially when they only learn about a hospice’s stance after enrollment, when time and options may already be limited.
Although these studies examine different parts of the medical aid in dying landscape, they point to the same underlying issue: authorization does not automatically translate into informed access.
On one side, people may not know—or may incorrectly believe—that medical aid in dying is authorized for them. On the other, even when people seek information, institutions may not clearly explain whether or how they participate.
In both cases, the result is the same: individuals are left without the information they need to make fully informed, values-aligned end-of-life decisions.
For Compassion & Choices, this research affirms what decades of patient advocacy have shown: passing laws is a step. Ensuring meaningful access requires education, transparency, and direct support for individuals and families navigating serious illness.
At Compassion & Choices, this gap between authorization and access is central to our work. Ensuring true access means more than passing laws, it requires transparency, tailored education, and systems that support people at the moments when clarity matters most.
For clear, state-specific information about how to access medical aid in dying in a state where it is authorized, visit that state’s page on our website. Each page outlines eligibility, the process, and available support so you can understand your options and make informed, values-aligned decisions.
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Compassion & Choices Gift Processing Center
PO Box 485
Etna, NH 03750
Compassion & Choices is a 501 C3 organization. Federal tax number: 84-1328829
